Special Ed Insider

Right to Birth

2011-01-29T14:12:00.000-08:00

The new effort to repeal the health care reforms that were so hard won has got me steamed-- and active again. Thanks to President Obama, Democrats and a few brave republicans, my daughter lives. My insurance company would love nothing better to drop her, or even better, as they do now, continue collecting premiums for her but denying any claim related to her "pre-existing" disability. I know, they only say "pre-existing" because "too expensive" is so blunt it is offensive.

The Republican Party (as opposed to republicans I know and love) is so dysfunctional on this issue. Figure me this:
My daughter had a right to birth but not a right to life saving health care.

To follow their logic, my patriotic duty would be to stop using MediCaid, her state sponsored health care-- which is, as Ryan intimated, going to ruin America, bankrupt us and make us like Greece or England. (And, I would just say, Greece is a nice place. Really, Ryan's comment was just rude. Frankly, for all their present problems, they are a lot older than us and deserve more respect from an upstart young nation than that. After all, they INVENTED the democracy we so love.)

Yet, repeal of health care reform would allow the evil Aetna to drop her, or to enforce the 4000 lifetime limit on pre-existing conditions-- which she blows through by about February of each plan year.

So, Representatives Ryan and Noem, Senator Thune, should we just take her off her meds and let nature take its course? Does she, or does she not have a right to life saving health care? And if not, why are we fighting for the right to birth?

Rett Syndrome gets a boost from MSNBC!

2010-02-16T09:11:00.000-08:00

The International Rett Syndrome Foundation (IRSF) is the recipient of an extremely gracious, generous and incredible donation…advertisement design and space for an entire day onwww.msnbc.com!

The MSNBC website generates 3 million visitors per day, and likely even more on Feb 24^th with coverage of the Vancouver Winter Olympics . It is estimated that 15% of those visitors will click on the IRSF advertisement, which will bring them to our website: www.rettsyndrome.org. This means there will be an additional 450,000 people learning about and donating to the cause we all hold so near and dear to our hearts—Rett syndrome!

On this day, IRSF’s website will be unveiling and promoting the newly established Research to Reality campaign which is out of the starting gate with an incredible $1 million Pioneer Fund Matching Grant award.

IRSF hopes this will be the largest online giving day in Rett syndrome history! And to think—it will all be doubled through the matching grant!

How can you help?

Mark your calendar to visit www.msnbc.com on February 24^th

Donate whatever amount you feel comfortable with to IRSF on this day

If you have not done so already, join Facebook and become an IRSF Fan before February 24^th…this can be found atwww.facebook.com/rettsyndrome

Visit the Research to Reality webpage found underwww.rettsyndrome.org > Get Involved to learn about this exciting and promising campaign

Contact your local NBC affiliates to share this news, as well as your personal connection to Rett syndrome, especially if they have covered your event or story in the past (make sure to reference past coverage date(s), headline, and lead reporter)

Encourage your friends, family members, co-workers, contacts and other Rett families to do all of the above as well—it is simple…

Forward this email or write your own email including the wording above
Add the following statement and attached logo to your email signature, blog, website and/or Facebook status page regularly between now and February 24^th: “Visit www.msnbc.com on February 24^th to show your support for Rett syndrome!”
Make the Research to Reality logo your Facebook image for the day of February 24^th and post a reminder to visitwww.msnbc.com to your Status
Pledge to learn something about Rett syndrome on February 24^thand spread the news in support of World Rare Disease Day on February 28^th

This is a very exciting opportunity for every one of us affiliated with the International Rett Syndrome Foundation—whether you are a parent, grandparent, relative or friend caring for someone diagnosed with Rett syndrome…or a researcher working feverishly to find the answers to solve the mystery of Rett syndrome…or simply just a caring individual who wants to help make a difference in the lives of so many…

Your help is their hope…they are waiting patiently…but now is the time to make a difference. We need YOU!

Please let me know if you have any questions—I am happy to answer them or help you make this day a success.

South Dakota's new IRSF Rep

2009-12-07T07:26:00.000-08:00

I am excited to be the new regional representative to South Dakota for the International Rett Syndrome Foundation (IRSF). If you or anyone you know has a daughter with a global developmental disorder that is undiagnosed, or who has a clinical or medical diagnosis of Rett Syndrome, please get in touch and pass on my contact info via this blog!

For more information on Rett Syndrome and IRSF, click here.

Kaiser Continues Denial Processes

2009-11-04T08:27:00.000-08:00

If there is one thing I have learned in being a mom of a child with disabilities, it is that the more persistent I am the more likely I am to get results. One public employee (of an unnamed agency) said, "you don't have to be a bitch!" and I replied, "you have trained me to be very assertive, when I am nice you take advantage of my good nature."

So with schools, Regional Center, MediCal as it is with Kaiser. Every one wants our monthly premium and tax dollar, no one wants to serve my child.

Kaiser responded to our complaint by noting that we discontinued our coverage as of October 1, 2009 and thus were no longer eligible. I am sure that they are trying to discourage me in hopes I go away.

THink again, you dirty rats!!

Thanks for the great comment and helpful suggestions!

Next steps:

Forward this to Disability Rights Advocates in hopes of joining a class action case
Contact my benefits manager at work as suggested and have a phone conference with Kaiser (big employer!)
Of course respond in writing that the patient was covered at the time of the denial
Request an Independent Review in the meantime.

I'll keep posting on this.

GRRRRrrrrrr. I hate having to always be the biggest dog in the dog fight.

Single payer might have its drawbacks, but I keep thinking, seriously, could it be any worse for my kid and the millions of uninsured and "uninsurable" citizens of our great nation?

Ok, enough ranting. For now.

Kaiser DME denial discriminates against disabilities

2009-10-24T10:01:00.000-07:00

Kaiser recently denied a speech generating device for our daughter. After some research, I wrote this letter and thought to post it here in case it is useful for others:

Member Case Resolution Center
4480 Hacienda Dr., Building B, 4th Floor
Pleasanton, CA 94588
Fax: 925-924-5165

October 22, 2009

Dear Ms. _____,

Regarding the denial of a medically necessary speech-generating device for my nine-year old daughter, , we dispute the decision of Dr. H for three reasons:
1. In reaching a recommendation contrary to the finding of the Kaiser licensed speech and language pathologist (who did meet with our daughter for an evaluation) Dr. H never met our child in person (other than in passing in the hallway). And, based on the generic rationale for denial, we have no evidence that Dr. H completed a thorough review of the AAC assessment from Dr. B (enclosed);
2. The standard Kaiser formulary criteria for speech generating devices discriminate against patients based on age and disability; and
3. Based on the extensive report of AAC assessment, our child does meet the formulary criteria, in spite of their discriminatory nature.

Additionally, we are aware of the case brought by Disability Rights Advocates Metzler et al. v. Kaiser Foundation Health Plan, Inc. et al. Case No. 829265-2, alleging that Kaiser fails to provide people with mobility disabilities full and equal access to Kaiser Permanente—California Division’s health services and facilities, in violation of California Civil Code §§ 51, et seq., 54, et seq., and 3345, California Government Code §§ 11135, et seq., and the regulations promulgated thereunder, and Section 17200 of the California Business and Professions Code.

Parts 24 and 25 of the settlement agreement for which reads:
"24. Plaintiffs have raised issues concerning Kaiser's policies and procedures for the procurement and maintenance and repair of durable medical equipment for members with disabilities. The parties have determined that they need additional time to address these issues. Accordingly, the parties agree to use their best efforts and to proceed in good faith to address these issues and arrive at a future agreement resolving them. In the event that such an agreement is not reached, the release provided in Paragraphs 41 -42 shall not apply to plaintiff's claims relating to durable medical equipment.

25. With the assistance of the parties, the Access Policy Consultant(s) and/or the Access Policy Work Group will review Kaiser’s policies and procedures (or the absence thereof) for addressing the communication needs of people with vision, speech, hearing, and cognitive disabilities and, where appropriate, will recommend reasonable modifications that Kaiser will adopt and implement. With respect to the model facilities, this review, recommendation, and implementation process shall be completed within one year from the effective date of this Agreement. The review, recommendation, and implementation process for all Kaiser facilities in California shall be completed within three years from the effective date of this Agreement."

With respect to the formulary, you stated in the denial letter dated October 13, 2009 that a speech generating device (numbering ours for ease of reference):
PART I: Will be covered if:
A. Have completed at least 2 years of speech therapy with out improve communication/speech and
B. Have a care-giver [sic] who has the ability to provide for maintenance and training the use of the device and
C. Mental and cognitive abilities to generate speech and
D. Comprehension and expression of language equivalent to at least that of a five year old
PART II: And meets one of the following criteria
1. Loss of previously developmentally normal speech through illness, trauma or degenerative disease with retained cognitive abilities
2. Failure to achieve speech communication using adequate alternative means.
PART III: Not covered for:
a) Use in developing language
b) Education goals
c) Child has spoken language adequate for expression of needs

With respect to Part I:
1. Criterion A. As stated in the enclosed report, provided to Dr. Hayward, “Emma continues to demonstrate severe oral motor and verbal apraxia and would not benefit from traditional speech therapy. The only remedy for her impairment is a speech generating device” (p. 4: Buzolich, 7/23/09).
2. Criterion B. Emma has two care-givers in the home who are able to care for, maintain and program the device. Her parents have attended trainings online, rented a device for home trial and were able to mount, adjust attack angle and positioning and dwell times, program pages and train others to use the device.
3. Criterion C and D “mental and cognitive abilities to generate speech and comprehension and expression equivalent to at least that of a five year old” discriminate against patients on the basis of developmental or intellectual disability and age. Many patients with developmental disabilities have a medical need for speech generating devices though they many never develop the complex syntax and vocabulary of a five year old. To discriminate against this class of disability is to invite a legal test. In addition, these clauses allow previously neurotypical adults with trauma or illness to lose ten to twenty years of cognitive capacity and still qualify, while young children have to meet and/or surpass their typically developing peers in order to qualify. We do not believe these clauses of the formulary could stand a legal test. We are sure you will wish to reconsider these as they invite a class to seek legal remedy.
4. In spite of this, we urge you to consider that in Emma’s case, Dr. Buzolich’s report clearly indicates that Emma has receptive conversational language comparable to children of her age (8 years). She is currently working comfortably in a modified second grade curriculum and meeting many first and kindergarten grade level standards, including expressed comprehension of such complex concepts as sequencing events, using fractions, and counting by fives and tens. She has eagerly embraced every system of communication offered to her for as long as she could use it, including speech (before she became symptomatic), sign language and PECs and currently a robust eye-gaze communication system that includes her 84 e-tran boards (Buzolich, p2-4). Her receptive vocabulary far exceeds her expressive vocabulary, thus she meets Kaiser’s criteria despite their discriminatory nature.

With respect to PART II:
1. Emma had approximately 100 words at age 18 months, well within the benchmark range. She has retained much of her cognitive function and continued to develop cognitively and linguistically since then.
2. Emma has, as previously noted, not benefited from speech therapy.

With respect to PART III:
Again we note that these three clauses together and each discriminate against patients based on their age and disability.
a) Criterion a: not to be used for language development. This criterion discriminates against minors in violation of civil rights law; all children and young adults develop language. This means that only older adults may qualify under this criterion, clearly discriminating against children. While Emma is still developing language (as her typically developing peers are) she has language to meet #4, Part I.
b) Criterion b: not covered for educational goals. Kaiser does not proscribe the use of any other medical devices provided by Kaiser such as wheel chairs, standers, walkers, glasses, hearing aides, or orthotics even when these are obviously used at school and in meeting educational goals such as ambulating in Physical Education or reading, listening and speaking (developing language) in Language Arts. Since adults are not affected by this exclusive criterion, it unfairly discriminates against children with disabilities that severely impair communication. In spite of this objection, Emma does NOT need this device for educational needs as stated by Dr. Hayward in her original denial. In the comprehensive AAC report, Dr. Buzolich clarifies that Emma has a My Tobii P-10, purchased by her school district, in her classroom and uses this to access her daily curriculum (Buzolich, p. 1). Emma needs this speech device for use primarily in the home. We note that in your denial of DME (transportation option for Emma’s chair) Kaiser stated that DME is for use primarily in the home.
c) Criterion c: Child has spoken language adequate for expression of needs. This criterion discriminates against minors and an entire class of disability: children with severe communication disorders. Adults with ALS or MS who have spoken language to ask for their needs are not proscribed from speech generating devices by this criterion. Since “adequate expression of needs” is undefined the criterion is overly broad. Young children have many needs that require complex communication. Emma needs to communicate simple needs, such as hunger, thirst and fatigue and restroom—all available to her on a 4x4 eye gaze board. However, even with a skilled partner, it is difficult for her to independently communicate more subtle needs, including: physical needs such as location and severity of pain, seizure aura; or emotional needs such as loneliness, anxiety about her health, fears about the future, or the content of nightmares that wake her in tears. Anything more complex than these common childhood needs, such as identifying a favorite classmate for play dates, recounting events of the day, discussing an upcoming event, telling her siblings to get off her chair or out of her room is beyond her ability to independently access. These are all age appropriate, very fundamentally and essential psycho-social communication needs. To deny her access to this language is medically negligent.

We hope that Kaiser will review Emma’s case and approve this request for speech-generating device as recommended by the Kaiser SLP, as Emma meets the current criterion. We also hope that this will prompt a review of these unfair and discriminatory criteria as it is in Kaiser’s best interest to uphold civil rights of its patients.

California is not the heartland

2009-09-14T07:36:00.000-07:00

We have had such amazing experiences since moving out of California. The term "heartland" for the midwest always struck me as a cliche (being from liberal, progressive California). But I am beginning to get it.

California is an incredibly wealthy state. South Dakota is less so. Californians flaunt their wealth. South Dakotans use it. I have yet to see an Escalade here. But the schools all have libraries. And librarians. Most families live in homes that are under 2000 square feet in our new home town. But the schools have computer labs. And computer teachers.

Attending an IEP team meeting in California, the team made a recommendation for an assistive technology device, and our program specialist squirmed. She claimed she could not recommend the device because she did not have the authority to authorize to make the purchase. (Even with attorneys present she could not bring herself to comply with the law without reservation).

At an IEP team meeting here, the special education director asked questions like, "Do we need to purchase a device for her?" and "What training do we as a team need to get ready for her?Should we hire a consultant to train us or will the state department of education be able to provide training through their assistive technology group?" (FYI, California's state DOE does not have an AT group).

In California, the smallest of obstacles for providers becomes a mountain too tall to scale, too big to go around. Even though there is a staggering amount of money flowing through the economy there (Gary Eberhardt said they spend 68 million dollars on 4000 special education students per year) they can't seem to make that money work. There are fewer than half that number of people in this entire town. Yet here they manage to fund their schools, keep libraries, computers, art, music, AND bus their special education students to town each week for adaptive aquatics. No one in the school district is afraid to comply with IDEA or ADA because compliance is too expensive.

Of course, my in laws drive a late model domestic mini-van (which, horrors, has a dent in the fender), cut their own lawn (1/4 of an acre) and take most of their meals at home, rather than ordering or going out.

I wonder where all the money comes from?

Socialism, Fascism and Health Care

2009-08-24T07:17:00.000-07:00

I have a child who is uninsurable. As with so many millions of Americans, she has a "pre-existing condition." Simply translated: "known to actually use medical services and therefore predictably too expensive." Recently I learned my job is in jeopardy, and like millions of parents with children with disabilities, did the only thing I could. I panicked.

Socialism is flung about as a dirty word by those opposed to changes in the flow of money through the healthcare industry. According to the Encyclopedia Britannica, socialism is based on the ideals of democratic, “non-coercive communities working non-competitively for the spiritual and physical well-being of all.” That does not sound so bad. Almost like church.

On the other hand, Fascism includes a “…militaristic nationalism, contempt for political and cultural liberalism, a belief in natural social hierarch and the rule of elites and a desire to create… a community in which individual interests would be subordinated to the good of the nation.” That sounds familiar in a not-so-nice way.

Competition has its place. In a well functioning market we see contained costs, customer driven prices, availability, and productivity. But competition implies losers. Who wants to lose in the health care race? Who wants to even chose who should lose?

The thing is, insurance is not the same thing as medical care. Medical Insurance is a profit driven, competitive business that makes money by charging more for medical services than they actually cost. Insurance companies would have us believe that we Americans have the best medical services in the world. That is a half truth. Some Americans have excellent medical care. But millions of Americans have none at all. Most Americans who have medical insurance are healthy, able-bodied and inexpensive to insure.

Here are case studies from my family (where everyone is actually insured):

My permanently disabled eight-year-old daughter waited three years for a commode (that is a grown up potty seat). For three years she was unable to use the toilet and had to soil herself. Five years to get a speech generating device (still not approved) and six months for a wheelchair. Physical therapy? Denied for the third year in a row. Her illness is progressive, but she is likely to survive for decades. As hard as it is to say as a mother, she probably will not get better. Her disease is being studied by private foundations and a small grant through the orphan diseases project recently begun at NIH. Insurance companies and government agencies all have layers of bureaucracy to screen her expenses and deny what they can.

By way of contrast, my father developed small cell lung cancer at age 65 (he was a smoker). He received top of the line cancer care. The research for this disease was initiated by Nixon, who started the "war on cancer" that continues today through private and public funding. That prolonged his life several months at a cost of $75,000 per chemo treatment (dozens) and several ICU stays. Following his treatment, he received emergency surgery for an aortic aneurism, a surgery that has fifty percent chance of leaving healthy patients gravely disabled. If they survive. The average survival rate is 6 months and the average cost is 2.5 million dollars. Typically, he faired poorly and spent the remaining several months in ICU. Thankfully, he had excellent care and never wanted for anything. While on the floor he had 24 hour nursing care, a respiratory and physical therapist, cardiologist, pulmonologist and intensivist a commode a wheelchair and a walker. The most likely outcome from the beginning (as hard as it is to say as a daughter) was that he would not survive more than five years from his first diagnosis.

Why was it so easy to get top of the line care for my father, but not my daughter? Even when they had the same insurance companies, it was always harder to get care for her. Layers of bureaucracy lay between her and the simplest of procedures while he had a liaison in hospital who provided case management. In essence, they both needed similar care: physical therapy, feeding, changing and medication management.

The answer is simple, but cynical. He was profitable. She is not. Insurance companies are not there to provide care, they are there to make money. In a free market system, his care made money, her care continues to lose money. He needed that level of care for a couple years after needing little for a long time. She will need a lot of care for a long time.

In the real America, Main Street America, you get medical care if, on balance, you don't cost too much. That is fascism. It used to be a dirty word.

I think, on balance, I may prefer a single payer system. Call it socialism if you want. I will call it providing for the physical and emotional and spiritual well-being of the nation. I will call it family values. You might too, if someone you love actually needs medical care, not just insurance.

IEP Questions to Ask

2009-08-17T06:19:00.000-07:00

Here is the first of many comparisons between California and South Dakota. Had a meeting with my daughter's future IEP team last week. We were a bit concerned about the move for her sake-- moving to a small town, would they have the knowledge and resources to serve her? I have to say, it was the best IEP meeting I've ever attended. All I can think is it comes down to attitude and belief. Here, they seem to honor and value the laws protecting children with disabilities and it seems even the children themselves. Here are some new questions the team asked that I have never heard before:

Tell us how her disability impacts her education.
What supports and related services does she need that we might not see on her IEP?
What assistive technology does she need?
What equipment will we need to get to be ready for her?
Does she have any durable medical equipment at school that we will need to provide?
What modifications will we need to make to the classroom to make it accessible and appropriate for her?
Does she own her device or will we need to purchase one?
What training will we need on her equipment, and what is the best resource?
What training does the staff need prior to her arrival?

All I can say is WOW. Thank you!! Thank you to our new community for the open armed welcome! I learned so much from this first short meeting. Thank you.

Hippotherapy

2009-08-07T18:24:00.000-07:00

One of the great things about our move is that my daughter will be able to ride-- we will probably get her a horse. We are finding out about Hippotherapy. Her aunt was a volunteer for a local group who provided this. We know that my daughter loves animals of all shapes and sizes, and especially horses. I am thinking of enrolling in some beginning courses so that I can volunteer as well. I'll post more on this as I learn!

A good day to move

2009-08-03T19:53:00.000-07:00

Today was a good day. Unlike her two younger sisters, Emma has been a bit conflicted about our move. Really making sure I understand where my autistic, aphasiac non-verbal child is coming from with the low tech limited communications systems we have now is tough. But today, she smiled and giggled when I asked how she felt about moving to the farm. So I think at least part of the time, she is positive. Next I am going to make some eye gaze boards with pictures of things there she likes (horses, rides on the ATV, Uncle Paul) and things she might not like and worry about (snow, new school, ???) and see what she wants to talk about. At least it is a start.

Why South Dakota???

2009-07-30T08:32:00.001-07:00

So many people have been asking, I thought I would write about our decision to go. For me, this is about acceptance.

Caring for a child with needs as complex and intense as my daughter is a daily challenge. So many people write about the joys and gifts of having a child who is different or ill that I rarely do... it feels like an over wrought and cliched genre to me. But before I start on the demands and complexities, I want to say, "I get it." I get the pleasure and the wonder of her absolute unconditional love for her family. I revel and celebrate in her accomplishments and ours in supporting her.

I don't know if I will ever really welcome Rett Syndrome or embrace it as a life lesson as some people have. Perhaps that level of acceptance is way down the road for me. I think I may be in a place where I can forgive myself for not going there. I'm OK hating what Rett Syndrome did to her, and regreting its impact on my family. I'm also more than OK in my role as her mom; I am a fierce mama bear. That is all I am and ever can be as her mother.

But this life comes with a price. In the same way that no one really gets what it is like to be a new parent and care for a new born until they do it themselves, no one really gets what it's like physically, emotionally and spiritually to raise a child with complex needs who is always on the brink of disaster. Raising children is rewarding, hard work.

Going to South Dakota to live on the farm is my point of surrender. It is reclaiming a life we always wanted and had almost given up on. For years we have stayed in the Bay Area, near the best hospitals and therapists, hoping for treatment and cure. Now I know. Nothing we can do here can stop the progression of her illness. And there is a lot there we can do to have a better quality of life, for her and for the rest of us.

So this is about accepting that I have no control over Rett Syndrome and that I want her to have the best life she can each day. Maybe there will be a cure. But we can hope for that, and work for it too, from there. While we feed the chickens and ride the horses.

Home Again and Packing!

2009-07-29T19:04:00.000-07:00

I had to take a bit of a hiatus from blogging-- things have been in a whirlwind!! Back again and getting ready to move. First things first, I promised a retrospective on our travel adventure.

Just to create a picture: family of five with three kids ages 8,7 and 5, one service dog, a wheelchair and (thank you, hold your applause) only ONE checked bag and one ACTUAL carryon size bag each! We show up at the ticket counter. Sane people see us and run to get in the security line ahead of us. Business travelers groan. To get a sense of what we are up against, my daughter with a disability is, in addition to having cerebral palsy, autistic, very sensory defensive and tends to have seizures under stress. So we had all that going for us.

At the ticket counter, the agent changed our seats for the first leg of the flight: the bulkhead is the only place to sit with a dog. People may try to convince you otherwise, and leave this to the gate agent, but the easiest place to do this is the ticket counter at check in. He could have changed all of our seats but did not. More on that later.

TSA was fantastic. Having been sent to secondary and practically strip searched when traveling on business, I was expecting the worst. But they were so kind and patient with my daughter. They opened up a second line for the family and put us all through together. We had ensure, baby bottles, gel valium and syringes. No problem. And the dog was great. Seriously, I think TSA agents should have service dogs. For the agents. We had service tags on the dog and a letter from our doctor but did not need any of it. Once they were sure we did not have a scud missile hidden in her chair, we were home free.

We checked the wheelchair at the gate. Good safety tip, make sure any detachable pieces (like, for example, the seat cushion) are connected to the chair. (Can you guess?)

In Denver, we ran into a few snags. Flights were delayed in and out. So we were late in, and had a flight delayed by four hours. The gate changed of course and so we had to get help finding transport to the new gate. (check the whellchair through? Note to self, never check it through, have it at all flight changes.) So there we are, and my daughter gets food poisoning (why do these things happen to her and not the rest of us??) from juice that I brought her to take her meds. At this point I went to the gate agent and explained: my child with epilepsy is ill, and sleep deprived and may begin having seizures, I need a quiet place to lay her down for a rest until the flight comes. It helped that I was calm, but obviously on the edge. They brought us a cot, blankets, and took the dog out for a walk. WOW! That is the kind of help we needed. Frontier Airlines is my new favorite!

The rest of the trip went without a hitch, except for the seat cushion, which showed up quickly. And for the second leg we had a second row seat, which we made work, but is no good with a dog. I was too stressed to argue. Next time, I will argue.

In fact, we had such a great time that we decided to relocate to South Dakota. So if my writing is a little sporadic for the next month, you know why!!

I'm looking forward to doing a comparison between California and South Dakota as far as living with a child with a disability goes. Everyone says we should not move out of California because of the Lanterman Act, but so far, I'm not convinced. California, land of my birth, is not my favorite place lately. All that glitters in the Golden State is not gold. Besides, life on a farm is great for kids. And, we are going to get a horse. Hippotherapy at last!

More later. Thanks for following!

Gina

Traveling: Wheelchairs, service dog, meds and all

2009-06-25T10:15:00.001-07:00

We are leaving today on a 10-day, four airplane, cross country trip-- two parents, three kids, a service dog and many items which will arouse the curiosity of the TSA, including a child with sensory defensiveness. Wish us luck! For those of you traveling with someone with a disability, here are some things we learned in our prep:

TSA: the usual bans on wierd electronics, gels, liquids and stuff can be waived so that a person can bring meds, devices etc. with them. You can read the TSA info here.

Service dogs: Many people have written about travel with service dogs recording various challenges, you can read another point of view here. TSA and airlines will allow service animals in the cockpit of the plane. TSA requires service animals to be visually identified. Although the federal laws regulating service animals currently prohibit discrimination such as requiring a license, many counties and states do have separate tags for service dogs. Ours has a county tag and we are carrying an affidavit from our doctor, just in case. We informed the airline when making our reservation and they were very helpful at least over the phone. We'll see how things are at the airport!

Wheel chairs: We are gate checking ours and getting a lift into the plane seating. Gate checking makes me nervous, they better not lose it!! Also, we have to change planes, so they are meeting us with a cart and assisting with transfers.

Meds: we have all kinds of meds, liquids, solids and gels. Also, over our luggage allowance. The airline is not charging extra for her extra bags and TSA assures us that although it will take longer to screen us, that simply declaring our stuff at the screening point will keep us out of trouble. Everything should be allowed through.

Rental cars: We will rent a van-- this time we don't need a ramp, but we did find this disability van rental service.

Easter Seals has a great website on accessible travel in many locations, including public transit, hotels, rental cars, airport etc. Check it out!

Of course, that is all planning and if I know anything about travel it is that nothing goes as planned. I'll report back afterwards with a retrospective! Wish us luck!

Regional Centers Denying services

2009-06-08T08:42:00.001-07:00

Seems like everything I say, write and think about lately starts with "in the current economic climate..." but the truth is little has changed for my kid at school or in the regional center. For five years, Regional Center has denied Augmentative Communication services and devices for my child at home. This year, they may provide them. It seems like they should have all along, under the Lanterman Act. That is also what Protection and Advocacy described in a Q&A for families.

A friend and local advocate shared this thought with me:

"Now more than ever the process involves getting the denial in writing and then appealing it. Every family is being asked to take a cut in services and only those that appeal are even getting consideration. It's wrong, very wrong, but that is how the RC is operating currently. Complaints to the Client's Rights Advocate at Disability Rights California (formerly PAI), should be copied to the case manager, the supervisor of the unit, and, in Concord, Ella Liggins, the Associate Director of Consumer Services. In the main office in Oakland, Pam Thomas is the Director of Consumer Services, and the Executive Director of RCEB is Jim Burton. I recognize that it is a few extra copies to send but until the RC gets the message that parents are not going to stand for unreasonable cuts, it may be necessary. Another critical part of this process is to be certain that all services are written in the IPP. While this sounds like a given, many parents have discussed services with the case manager and they have never been transferred to the IPP. It sounds simple but it is not always done."

A Modest Solution

2009-06-07T15:28:00.000-07:00

Our board members will be forced into the untenable, miserable position of having to make additional cuts to the MDUSD budget. I do not envy their position, nor the pressure they will feel from panicked parents who see our infrastructure crumble in front of our eyes. As a parent of three children, one with disabilities, I feel this pull and tug daily. Yet the child I represent at board meetings, state budget meetings and in the community is my child with a disability. If you have a child with a disability, you know why. The threat that all children face now is not new to us. Our kids cost more. That is reason enough for resentment.

Here are some objections and refuting talking points I am keeping in mind as I work with the board, neighbors, friends and legislators to advocate for our students and help others 'walk a mile in our kids walkers.'

The first and most important point is this. We are a community. Either we serve students with disabilities or we hang a sign at the district border that says "We don't serve your kind here." If we do decide to do the right thing, the civilized and ethical thing, then we should do it with as much pride as we do, say, football, band, robotics, and Honors courses. Right now we are uncommitted. We have parents irate that students might have to pay a fee to play extracurricular sports. At the same time, some of our students have to sit on the sidelines at recess because they cannot get to the play structures. We have a district that has spent tens of thousands of dollars in court, losing the argument that playgrounds don't have to be accessible to all students.Where are the indignant parents speaking for the disabled? Arguing that special education costs too much, not crying that those kids can't play. What does the board say? Nothing in defense of our kids, no apology for the playground structures, no shame at the fiscal waste.

Misconception: We need to cut spending. The governor and Republican minority claim we can cut spending and get out of the budget crisis. This is a revenue problem, not a spending problem. A majority of voters locally and throughout the state support tax increases. School districts have cut to the bone. The state needs to raise more money for the services we, proudly and rightly provide our citizens. We used to be an educational leader, now our per student spending matches our test scores: lowest in the country. If we want a first class educational system, we need to spend at least as much as New York. That would require doubling our per pupil spending and place us roughly in the top third of states. Until then, we get what we pay for.
Misconception: Special education is too expensive! Parents of regular education students have noticed that special education takes up 23% of the total budget. At about 11% of the total population, that means our kids with special needs are roughly twice as expensive as regular ed kids. Actually, 2:1 expenses is a really good ratio. While we have some students who require minimal services, I know that many children are more severe. Mine for instance has an aide, a nurse, and occupational therapist, speech therapist, assitive technology specialist, physical therapist, computer and a class of eight. Her education is more than 10 times what her sister costs the district. We have managed to keep our program costs reasonably low and our services for special education students are something we should be as proud of as our sports and Advanced Placement services.
Partial truth: There is a lot of fraud, waste and abuse in special education! The district should be forthcoming about waste and abuse. It has spent significant sums of money in court fighting students' rights. The money now allocated to resurface playgrounds is an example. Had those been properly installed, or had the district remedied the improper installation at the request of the Spieler class rather than going to court to appeal, that money wasted would now be available to hire teachers. The district should be as compliant with law as possible; it is the right, and least expensive thing to do.

Systematic abuse, not excessive service for disabled students, is the norm. Remember the nineties and early 2000's? Gosh, life was good! Unemployment was low, housing prices were rising fast, the governor still had seven Hummers. That was the economic context under which the consent decree in our district came into being. When money was flowing and business was booming, the district was forced to admit systematically violating the rights of students with disabilities. They agreed under a consent decree monitored by the federal court to set aside 20 million dollars over ten years-- a scant 2 million a year-- to remedy their ways. During the consent decree they managed to waste additional money fighting students with disabilities, wasting staggering sums of money and then having to do what the law required anyway. Now that times are bad, they say they cannot afford to special education. What's new? The Nazi's used this same propaganda to incite support of forced sterilization and euthanasia of the disabled. No one ever wants to spend money on children with disabilities. That is why we have IDEA and ADA. Otherwise, we might eat our young when we got hungry enough.

Lest we forget

2009-06-04T21:11:00.000-07:00

Recently in my home school district members of the board have been rallying to "study special education" to make sure it is "cost effective." Members of the community, alarmed by the violent cuts proposed to the education budget by our so called governor have been calling for cuts to special education.

How predictable that under stress communities would go after the weak and disabled as scapegoats. This same community that twice has refused to tax itself to pay for the education our own children. Are our citizens taking their torches and pitchforks out to the homes of the baby boomers who have benefitted from prop 13 all these years? Many of them paying less in property taxes all year than many of our young families pay in mortgage each month? Are they going after the governor, who proposed the cuts, or our Republican legislators who have taken a blood oath to not raise any new revenue, no matter what? Do they think that, maybe, under the circumstances that athletes could pay for extra curricular activities so that children with disabilities could have nurses, aides to change their diapers or speech therapy?

No, they go after children with disabilities. "Get the gimps! They cost to damn much!"

Americans after WWII love to vilify the Nazis. What has always scared me about Nazi Germany is not how alien it is, but how human they were, how recognizable. In that great Christian democracy (yes, Hitler appealed to Christians, especially Protestants, AND he was elected. Look it up) in that great democracy, when times got hard and Germans were standing in bread lines, it was the disabled they went after first. The tens of thousands of people with disabilities who were murdered were just the rehearsal for the Jewish Holocaust. They are not even remembered. And, it began here, in the States, in California. What scares me about Nazi Germany is how human they were, and how human we all still are.

The following is from the National Holocaust Museum site:

Popular films such as Das Erbe ("Inheritance") helped build public support for government policies by stigmatizing the mentally ill and the handicapped and highlighting the costs of care. School mathematics books posed such questions as: "The construction of a lunatic asylum costs 6 million marks. How many houses at 15,000 marks each could have been built for that amount?" (emphasis added).

Nazi Germany was not the first or only country to sterilize people considered "abnormal." Before Hitler, the United States led the world in forced sterilizations. Between 1907 and 1939, more than 30,000 people in twenty-nine states were sterilized, many of them unknowingly or against their will, while they were incarcerated in prisons or institutions for the mentally ill. Nearly half the operations were carried out in California.

A last thought from EUGENE V. DEBS

"Now my friends, I am opposed to the system of society in which we live today, not because I lack the natural equipment to do for myself but because I am not satisfied to make myself comfortable knowing that there are thousands of my fellow men who suffer for the barest necessities of life. We were taught under the old ethic that man's business on this earth was to look out for himself. That was the ethic of the jungle; the ethic of the wild beast. Take care of yourself, no matter what may become of your fellow man. Thousands of years ago the question was asked; ''Am I my brother's keeper?'' That question has never yet been answered in a way that is satisfactory to civilized society.

Yes, I am my brother's keeper. I am under a moral obligation to him that is inspired, not by any maudlin sentimentality but by the higher duty I owe myself. What would you think me if I were capable of seating myself at a table and gorging myself with food and saw about me the children of my fellow beings starving to death."

"The generosity of the voters"

2009-06-02T13:28:00.000-07:00

Yesterday I went to Sacramento to speak to the legislative budget committee on what the committee chair sarcastically called "the governor's revised revision of the May revise" of the budget.

The room was packed, standing room only, and the line went out the hall. During the public comment period, which lasted well over an hour, I joined citizen after citizen in appeals to our legislators. Each of us begging them not to cut education in our state further, describing the crippling blows our local schools and services have taken. No one spoke in favor of smaller government, less taxes or more cuts to education or health and human services. Yet the majority sat powerless to act, because of the tyranny of a few ideologues who have sworn a blood oath with their party to raise no new revenue, no matter what.

In California, it takes a two thirds vote to levy any new tax. In spite of a 59% vote in favor of new taxes in our district, we cannot raise money to stem the hemorage created by the violent slashing of the state budget. People are literally jobless, homeless and hungry, yet they sit smug and satisfied to do more harm.

One Republican member asked about the fraud, waste and abuse in In Home Supportive Services for the disabled that were, in his words "taking advantage of the generosity of the taxpayers." To him, I say this:

These services are so hard to get, I can't imagine fraud waste and abuse in the system. If there is, you risk killing the patient trying to excise the last of the cancer. Seriously, how much more can you spend trying to prevent unnecessary expenditures?
Second, charity and generosity are neither if they are given with resentment and used to shame the recipient. Generosity and charity exalt the giver and the receiver. That which you do unto the least of these...
Third, and most importantly, programs for the disabled are not built by generosity, they are built by wisdom. You are likely to need these one day.

As one great legislator once said, you will never be black, you will never be a woman, but you may easily become disabled on your way home.

Many people have told me that my daughter was born so that I could learn-- if there is a force out there that guides the life experiences we have in order that we may learn compassion, humility, and generosity first hand, may that force bring those lessons to the Republican party of California. And may no one else need suffer while they are learning.

Refusing Medical Treatment

2009-05-27T14:01:00.000-07:00

There was a great show on Talk of the Nation today on the right to refuse medical treatment based on the family that fled under a court order to provide chemo for their child with cancer.

I have had both friends and family refuse medical treatments for various reasons, and others who have used every available option. Going through this with loved ones so many times, I have come to understand how nuanced and intensely personal these decisions are, and to respect the place that people come to for their own reasons.

Parenting a child with complex needs makes these decisions so much more complicated to me than these other decisions. There all the disability rights issues, the moral and ethical issues, the quality of life issues there are also questions of her informed consent. The most important thing to me for any one facing these decisions is what matters to them. Yet how much can I rely on that with my child? Not so much, I think. Does that necessarily mean we do everything we can always, or would I do what I think I would want, or what?

Right now, I do everything, always. It feels right; she loves life, we love her, that is enough.

But there are the complex legal issues of refusing treatment for a child-- as a parent, we mostly can't refuse treatment. I could be in a bad situation if I refuse to go to the ER for another seizure and things go wrong. Or if I decide to try to take her off just one of her four seizure meds to bring her back to the world of the alert, without her doctor's consent? What is the role of the medical establishment and what is my role in parenting my child? I am not sure how I feel about that right now. But I appreciated the conversation today on NPR.

Access, It's an attitude!

2009-05-24T06:53:00.000-07:00

We took the family out to see Night at the Museum 2 at our favorite local theatre. Why is it our favorite? Accessibility of course. It has wheelchair seating in the first row and unlike a competing franchise, lots of chairs for companions or families. We can all sit together! And they have nice ramps at all the regular entrances. In fact, no stairs. A great separate restroom so we don't even have to jockey past all the regular stalls to get to the "big one" at the end. Even the snack area has low counters and is wide and easy to navigate.

More importantly, the staff there are always a pleasure. They are helpful without being obtrusive or indulgent. They always greet all three of my children without singling any of them out. Most refreshing to me, this theatre employs a number of people with disabilities, so my children feel at home-- this place reflects our lived experience. And my daughter who has a disability interacts with folks who are doing work that demands a great deal of interaction with the public. I believe this is part of the reason the whole staff there is so much more skilled than the public at large at interacting with our family. They have peers and colleagues with disabilities and varying abilities; interacting with us is a normal part of their lives.

Access is so much more than a ramp, it is an attitude of normalcy, an experience of being welcomed and fitting in. I am so glad to have places like this, and as my children experience more inclusion at school, I look forward to a future where most places are like this. Thank you again to the many generations before us who worked on ADA and IDEA.

Test Scores on Transcripts

2009-05-13T09:11:00.000-07:00

Principals in my home district are lobbying the school board to adopt a new policy to place California Standardized Test Scores on students transcripts. The board discussed this last night. I was disappointed that they did not seem to find much wrong with the argument. I am opposed to placing scores on transcripts for many reasons, as a parent but more importantly as an educator and researcher of many years. Here are my main points:

1. Adding a penalty and reward to a test that was NOT graded changes the testing conditions. The purpose of standardized tests is to standardize testing conditions. This is changing the very reliability of the instrument. And the validity of the data.

2. The strongest argument presented by staff so far is "Other districts are!" I can just hear my mother in the back ground, "Just because other districts are using cheap gimmicks to raise scores (rather than improving teaching and learning) does not mean we should." I know of schools where the principal purchased IPODs to raffle during test week (must be present to win). They saw a jump in test scores. Should we set aside funds for a bribe?

3. There are many examples of raising test scores by focusing on curriculum and instruction that are more professional and in the better interest of students' long term academic success than this proposal. If the goal is to improve curriculum and instruction, why are we not discussing that?

4. This strategy engages the most proficient (i.e.: college bound) students only and may exacerbate the achievement gap-- a persistent problem. The fastest and best way to pull up scores in schools (statistically speaking) is to focus on the increasing the lowest scores. Small gains in far below and below basic scores can pull aggregate scores up disproportionately. Yet many of these students are so far behind in the competition for college that transcripts have little value to them. Pulling students in for counseling to set academic goals; immersing them in content area courses that support content area literacy (rather than pulling them out for RTI that causes them to fall behind in standards based course work); assigning faculty mentors who discuss progress in coursework and test scores during tutorial; notifying parents of test scores and offering supports for lower scoring students such as after school test prep courses; heightening community awareness of the importance of test scores for property values and funding; these are strategies that will do a great deal to engage students and families in support of this effort. Of course, this requires effort and thought, which is what the transcript strategy tries to avoid. Engaging students who are disaffected, disengaged and disenfranchised from the schooling process is hard work. It requires courage and educational leadership, qualities we should demand from principals.

4. The CST produces little information of value about learning; it is a blunt instrument that gives better information about population trends than individual achievement. Or teaching. While we can get individual scores, we do not do item analysis. (see http://www.cde.ca.gov/ta/tg/sr/css05rtq.asp for released test items).

Item analysis is the only way to yield this kind of information:

90% of teacher A's students answered the item on meiosis correctly- teacher A must be teaching this well. Let's emulate that.

85% of teacher A's students missed all of the questions on Punnett Squares-- teacher A must not cover this. This is a heavily tested topic. Let's review how we teach this and design more effective instruction.

The best way for schools to determine how to improve their coverage in order to optimize test scores is to have department level meetings, with the support of the site educational leader, to review the testing blueprint (http://www.cde.ca.gov/ta/tg/sr/blueprints.asp) compare it to what is being taught and develop rich, engaging units of study around heavily tested topics and themes. You do not need better test scores to do this. In fact, you don't need test scores at all. You just need professional learning communities and administrators who are not afraid to tell their staff that test scores in fact are related to teaching and learning and that teachers CAN raise scores. Back to educational leadership.

It comes down to curriculum and instruction. Candy might help. But I think learning is better for long term health.

Taking the low road here would signal to me and to many people who are too smart to be fooled by this silly argument that our board does not have faith in our staff's ability to improve instruction and learning by focusing on instruction and learning. What I hear when I listen to these two principals is desperation. I hear an adult blaming students for their own failure to engage, inspire and teach. I feel embarrassed that our district would even consider sending this insulting message to students "Well, we've done OUR best with you, clearly your scores are low because you are not trying hard enough." It is time we all stood up and acted like adults who take responsibility for our work and our children.

Sometimes the right thing is not the easy thing. I think it is time for the board to send a message to staff that teaching and learning matter most. Focus on this, test scores will follow. Let students in on the secret-- under NCLB these scores matter for your school-- they will come through. Just like they do for other inter-school competitions in sports, music and robotics. Have faith in the teaching staff, and in students. Demand educational leadership from administrators.

Gina

ESY: A related service

2009-05-13T07:20:00.000-07:00

Citing budget problems, many districts are cutting back on extended school year. Some districts have cancelled it altogether, others are reducing services. One district we heard of is simply not running ESY and offering compensatory services in the fall. This is not legal, as far as I can tell from reading the law.

It is not legal for districts to make unilateral changes in related services listed on the child's IEP outside of the IEP process. Is your district reducing Extended School Year? If so, it is very important to understand your rights as you prepare to advocate for your child. Better yet, get a group of affected families together and make your case as a class.

We presented information to the board and requested they use stimulus funds to restore ESY. We hope this will have an impact on the summer programs.

Wright's law has important resources on advocating for ESY.

Superstition and Universal Design

2009-05-10T08:37:00.000-07:00

I've been thinking a lot about universal design as we work with contractors and local agencies, charities, friends and family to figure out how to remodel our five year old home to make the first floor bathroom accessible for our daughter.

I know, a five year old home, right? How could it not be accessible already?

Superstition. I think it is about superstition.

When I asked a local politician about building codes and why they were not written with this in mind, for example, why any door on any new building in our county or state would be less than wheel chair width, he said first "cost". After I finished gaffawing and pointing out how this is simply erroneous and disinformation (when you build something from scratch, that is the cheapest time to make it accessible, the cost excuse only comes into play during the remodel ordeal) he said something very insightful, and I think very true.

"Not everyone needs things to be accessible! Why build everything that way for the one person who may every use it?"

"Because," I should have said, "You may be that person. I hope it never happens, but YOU may become disabled on your way home after our conversation on universal design." Random events. It is not about luck or karma or some kind of cosmic intelligence doling out rewards to the deserving. About 10% of the population is disabled, after these wars it will be higher, and that 10% is impossible to predict.

In our school district, more than 10% of our students have a disability, but the board and most of the community still act as if it were a 10 in 10,000 occurrence.

The only thing I can think of is superstition.

No one wants to act as if they could be next. No one wants to plan for life with disability when it is not part of their immediate experience. No two able bodies people want to get married and buy a house that is fully accessible, even though the odds are that it would be a good idea-- most of us in old age will need some modifications to our home, if not before. No mother wants to conceive and imagine any thing other than "healthy, ten fingers, ten toes." No district wants to imagine serving even MORE disabled students (as one member of our administration says often, "they keep coming here for the services." So, we act as if ignoring the need will some how prevent the need.

Yet houses built today will have several owners; they should last a century at least. Schools are built and will serve whoever lives within their boundaries for many decades. Sidewalks, streets, subway stations, new malls... the same. We build as if everyone were like us.

It is way more expensive and inconvenient to remodel.

And in my experience so far, limited though it may be, building as if disability does not exist does not ward off disability.

The least effective way we have to deal with our fear of disability is to ignore it. To build our infrastructure as if it were exceedingly rare and unlikely. It is like throwing salt over our shoulders, saying a prayer for a spontaneous healing of Rett Syndrome. Sure, prayer can't hurt, but you might as well get off your knees and say those prayers with a wrecking bar in your hand 'cause ain't no body out there building all houses accessibly, even though a lot of babies needs it.

And while you're down there, maybe say a prayer that people will come to their senses and build as if disability might someday effect them or someone they love. It won't bring bad luck down on any of us, and it might give the next family a better shake the next time random events play out and they need an accessible bathroom on the first floor.

Universal Design-- it is an attitude, more than anything. Every architect should have to spend a week in a wheel chair before getting a degree.

Marriage and special needs children

2009-05-07T20:48:00.000-07:00

There have not been many strong studies on the impact of caring for a child with disabilities on marriage, according to an article in the Wall Street Journal, which reviewed a such few studies. I have known quite a few families who care for children with disabilities who stay together, and of many single parents caring alone for a child with special needs, and know also that many, many of the children in foster care have disabilities.

Does the stress and grief bring us closer than we would be if all of our child were typical?

There are times when I know we would have been happier with a different experience. I could have lived my whole life without hearing the diagnosis over the phone. And there are times when I knew I was with the right person. After getting the diagnosis over the phone, where else in the universe could I have been but in his arms?

But I do know this. Life would have been easier, but I have known many people with much easier lives who are unhappy.

On the other hand, would I, would we, be happier without Rett Syndrome? Hell yes. I would trade every happy moment, my very life, for a cure. Take me, only take this from her. From us.

Really, 'would we be happier?' is not a productive question. There is no imagined other happier life, only this one. All we can do is play the hand we hold and we hold hers.

And I do know another thing: I could not have done this with my first husband. That marriage could never have been improved with the stress of raising a special needs child.

And this: If my marriage now has not been improved by the stress and grief of raising a special needs child, what has drawn us closer is our ability to hold each other in grief, to turn toward each other with compassion when one of us is ready to lash out or collapse, and to work together in adversity. And sometimes sheer stubbornness.

As my husband says now while I write this: I suspect it is all in how people respond.

It is about the marriage, not the children, not the stress, not the mortgage.

Do you have some tips for keeping a marriage strong while caring for a special needs child? Here is our starter list:

keep a sense of humor: raising a child is life in the theatre of the absurd. laugh. cry when you need to and laugh a lot.
keep a united front: the outside world can be rugged. be each other's champions
keep asking for help: don't be to proud to use all the public and private resources you can, raising a special needs child is a marathon, and an expensive one. You may be doing this for a long time, and without help, the task can easily outstrip your financial, emotional, spiritual and physical resources.
take breaks. with each other, with your other kids, alone, with friends. build a community and let them refill your cup. refill theirs as well. make friends before you need them.
build a marriage team. Know which of your friends are also friends to your marriage. talk with them when it gets to be to much so that you have a safe place to vent, talk and problem solve.
know when to slam a door and when to let things go. apologize. forgive.
know when to get help or even to walk away: our pediatrician told us when we were spending hours walking a "colicky," inconsolably sick child that colicky babies are often abused. The same goes for children with very challenging behaviors. Protect yourself, protect your child. Get help, get away, get out before anyone gets out of control

Got ideas? love to hear them...

Inspiration

2009-05-01T17:16:00.000-07:00

Jana's post on inspiration gave me lots to think about today. (Thanks, Jana!) Coincidentally, it came on the same day that I have been reflecting on an aphorism I saw in a bathroom (inspiration comes in unlikely places...) that said "Follow the path of your destiny with purpose and an open heart."

I've been so overwhelmed lately with the processes involved in caring for my girl (though not actually caring for her, or her). The whole applying for MediCal, IHSS, Regional Center, IEP etc. business just really gets me down.

But reminding myself that this is my path, my destiny or my fate and to approach it all with purpose helps me to channel the fierceness I sometimes feel. I always know my purpose with her- to let her know she is loved and safe and beautiful. But is there a larger purpose? I guess the one I fall back on for inspiration is this (a good one for a staunch agnostic):

I expect to pass through this life but once.
If, therefore there can be any kindness I can show or any good thing I can do
for any fellow being let me do it now...
Let me not defer it, or neglect it,
For I shall not pass this way again.

Stephen Grellet (Etienne de Grellet du Mabillier)

And it reminds me of all the inspiring people who flagged the trail, then graded the track, laid the gravel and left room for us to pave the road. Thanks to all those families and parents who found a purpose in this fate and worked toward IDEA, ADA and the other small policies and works that make our lives better.

Moving on with a renewed sense of purpose, and a more open heart, at least today.

Extended School Year

2009-04-30T21:16:00.000-07:00

Lots of districts are cutting ESY this year. In response to this question:
"But what if a student has more time than that specified in their IEP?"
An administrator replied:
"Families will be called for an IEP meeting and the IEP will be revised. And if parents disagree, we'll see what happens then..."

What recourse do parents have? File a complaint? Go to hearing? Give in?

Who has the lawyer on retainer and who is busy raising a child with special needs?

It just is unfair bullying. In my personal opinion, that is nothing short of reprehensible.

In case you need to know, here is what the CA Ed Code actually says on ESY. (The section G1 on qualifying for Average Daily Attendance is important, we think.)

5 CCR 3043 - Extended School Year Services

3043. Extended School Year.
Extended school year services shall be provided for each individual with exceptional needs who has unique needs and requires special education and related services in excess of the regular academic year. Such individuals shall have handicaps which are likely to continue indefinitely or for a prolonged period, and interruption of the pupil's educational programming may cause regression, when coupled with limited recoupment capacity, rendering it impossible or unlikely that the pupil will attain the level of self-sufficiency and independence that would otherwise be expected in view of his or her handicapping condition. The lack of clear evidence of such factors may not be used to deny an individual an extended school year program if the individualized education program team determines the need for such a program and includes extended school year in the individualized education program pursuant to subsection(f).

(a) Extended year special education and related services shall be provided by a school district, special education local plan area, or county office offering programs during the regular academic year.

(b) Individuals with exceptional needs who may require an extended school year are those who:
(1) Are placed in special classes or centers; or
(2) Are individuals with exceptional needs whose individualized education programs specify an extended year program as determined by the individualized education program team.

(c) The term "extended year" as used in this section means the period of time between the close of one academic year and the beginning of the succeeding academic year. The term "academic year" as used in this section means that portion of the school year during which the regular day school is maintained, which period must include not less than the number of days required to entitle the district, special education services region, or county office to apportionments of state funds.

(d) An extended year program shall be provided for a minimum of 20 instructional days, including holidays. For reimbursement purposes:
(1) A maximum of 55 instructional days excluding holidays, shall be allowed for individuals in special classes or centers for the severely handicapped; and
(2) A maximum of 30 instructional days excluding holidays, shall be allowed for all other eligible pupils needing extended year.

(e) A local governing board may increase the number of instructional days during the extended year period, but shall not claim revenue for average daily attendance generated beyond the maximum instructional days allowed in subsection (d)(1) and (2).

(f) An extended year program, when needed, as determined by the individualized education program team, shall be included in the pupil's individualized education program.

(g) In order to qualify for average daily attendance revenue for extended year pupils, all of the following conditions must be met:
(1) Extended year special education shall be the same length of time as the school day for pupils of the same age level attending summer school in the district in which the extended year program is provided, but not less than the minimum school day for that age unless otherwise specified in the individualized education program to meet a pupil's unique needs.
(2) The special education and related services offered during the extended year period are comparable in standards, scope and quality to the special education program offered during the regular academic year.

(h) If during the regular academic year an individual's individualized education program specifies integration in the regular classroom, a public education agency is not required to meet that component of the individualized education program if no regular summer school programs are being offered by that agency.

(i) This section shall not apply to schools which are operating a continuous school program pursuant to Chapter 5 (commencing with Section 37600) of Part 22, Division 3, Title 2, of the Education Code.

[Authority cited: Section 56100(a) and (j), Education Code] [Reference: Sections 37600, 41976.5 and 56345, Education Code; and 34 CFR 300.346]

Holland?! As if it were a vacation...

2009-04-26T16:21:00.000-07:00

Oftentimes when I meet people and we get around to The Subject-- you know, I have a special needs kid... blah blah blah-- people try to think of things to say that are supportive, helpful, even politically correct. And as we get to know each other some of them will begin to send me things, like the essay Welcome to Holland by Emily Perl Kingsley.

Now, I everyone is entitled to their opinion, and every family's experience of raising a child with special needs will be different, but I have to say, a friend and I spent a good evening just busting a gut laughing about how far off the mark this essay is from our own experience. Like, we've seen pictures of Holland, and it does not seem so bad! Why you cappin' on the Dutch? What did they do to you? If you haven't read it, Emily describes the experience of raising a special needs child as being like diverted from one vacation destination to another.

Maybe in her world. In mine, raising a child with special needs is no vacation. I mean, I've been on vacation, and I don't remember doing the Hiemlich, timing seizures, running to the ED by ambulance after administering emergency doses of valium rectally, having to fight legal battles to just let my child join her friends at typical kid stuff. I mean, on vacation you do stuff like relax, enjoy watching your kids build sand castles at the beach. Right?

In my world, I feel a bit more like Sisyphus. We never left the airport. Just what do you do when vacation is cancelled and your whole family is stuck for a lifetime at JFK International? Well, sure, you make the best of it: buy books, go to the restaurant, play games, nap. Talk about what you'll do if you ever do get to go on vacation. You might even start negotiating-- so what would it take to actually get to do stuff that other people do? You might even take turns going on vacation, or begin to build a new vacation destination that could accommodate your family. Or you might just pack up and go home, realizing vacations are not for you.

But most definitely raising a child with my kid's special needs is no vacation. Not even in Holland.

We should all be careful to remember that disability is very individual. Some experience a disability that impacts them in ways that are complicated, challenging and unexpected but ultimately not devastating-- say a child with mild Down's that grows up to hold a job and have a circle of friends and vote. Others may have a different experience-- maybe the version of Down's Syndrome that comes with the cervical spine instability and life in a wheelchair with a ventilator and a feeding tube. These are not the same experience.

For me watching my child die by the inch is more than a change of destination. I have a hard time hearing the PolyAnna's in the disability community use a voice that sounds as if they are speaking for me-- as if I like them should be so unaccountably well adjusted, happy and accepting of my child's disability. As if I should be grateful for the beautiful lessons I have learned, the incredible people I have met and (supposedly) never would have learned or met without her-- which I am. It's just that I know that no version of the Glad Game will change conditions on the ground.

I am still daily wrecked by my child's experience. She's eight. I don't think I will ever get over that. She was robbed. She got a raw deal. No parent should ever have to be on the line with a 911 operator while their child is seizing for the 19th minute, waiting for the siren, and answering "is she breathing? is she blue around the lips?" over and over. I would NEVER demand anyone else go through this, not another child, not another parent.

No, it is not Holland. And stop saying that about the Dutch. It just is not nice.

New CAC pilot blog! cool.

2009-04-24T09:53:00.000-07:00

See the new Mount Diablo Unified School District's Community Advisory Committee pilot blog!

Cost Effectiveness

2009-04-21T10:11:00.000-07:00

Our school board has a bee in its bonnet about the cost of special education. Apparently, it costs a lot of money to educate kids, and even more to educate kids with extraordinary needs.

WHO KNEW?

So there solution is to complete an audit. Oh, and in a nice Orwellian move, they are now calling this a "review." And they switched from talking about cost effectiveness to efficiency and quality after a number of parents began publicly making noises that this was discriminatory.

Well, it IS!

You don't hear anyone out there complaining about the high school student who:

Takes all AP courses (extra costs: small ratio, highly qualified teacher, special curricular materials)

joins a couple of clubs (extra costs: staff, facilities)

stars in the school play (extra cost, production, facilities, supervision, copyright for the scripts)

plays a couple sports, one of which is water polo (extra costs, travel to competition, maintenance of sports facilities including the new 3 million dollar pool rehab, coaching and trainers)

is president of the student council... etc.

Oh, but, right. Uhm. Gosh this is awkward. Well, see that kid? Well, she will... you know. Amount to something. You know, be PRODUCTIVE.

So we feel ok about that money. THOSE kids deserve it.

Here is my take away: My kid will never amount to anything. Every extra thing she needs is takes something from a deserving student; someone who is productive. If this were a factory, we would judge our productivity on quality units produced per year. My defective kid would count against our productivity. If this were a factory, she would go back into the slag pile and be melted down and re-made.

But this is not a factory. Some kids cost more. And that is ok. Even if they don't play water polo.

Or maybe it is not. Maybe we should go back to the days where we just warehoused as many disabled people as we could for the least amount of money. Institutions is such a nice word for a ghetto.

Eugenics, anyone?

overwhelmed by entitlements

2009-04-20T08:24:00.001-07:00

I just have not been able to write lately. I have sat down so many times to update my blog and everything wants to come out at once-- suddenly the pipelines are blocked. I think my synapses are fried. I had an interview with IHSS (In Home Support Services, part of MediCal, I think? Such a big agency I just have not taken the time yet to learn the system). Any way, they sent over this very lovely young social worker whose job it is to determine whether our family needs additional resources to care for our daughter at home. She began with a question that just froze me:

What is extraordinary about caring for a child like Emma who has Rett Syndrome?

At first, I could not think of anything, but as she began asking more specific questions, it began to seem like everything. And so much is invisible. I am not complaining here but as I have gone through my days since then, I have noticed how much of my conscious time is committed to monitoring my girl. ANd monitoring those who monitor me, monitoring her. My new thought is this. There are several ways one could find out that do not involve full time case management. Given her genetic test and diagnosis, you could look it up. Or, the best way to get a sense of what Emma needs help with is this experiment: tape your mouth shut, then tape your thumbs together. Now go through your day. For as long as you can. When you want to bang your head and scream, you can stop the experiment. Then remember: she can't. Nor can we.

Here is what I have figured out: for school, we have to answer yes to as much as we can, otherwise they will consider her mentally retarded and treat her as untrainable. For MediCal and Regional Center, we have to answer no to everything otherwise they will consider her highly functioning and reduce as much support as they can. And everything we say is true.

Here is my current worry list, maybe just to download it will clear my mental agenda:

Emma needs: a new chair, new leg braces, a lift for the van. That means a huge logistical nightmare with Kaiser, MediCAL and Regional Center. If you read my post about the potty chair, you might understand why this drives me literally to tears.
We are traveling by plane this summer to the farm to see family, and I have to arrange wheel chair, changing planes, and getting liquid food supplements through TSA before we go. That is end of June, so I am late getting started.
Emma's trazadone is not working so well, and we need to switch meds. This requires a neurology appointment and careful coordination so we are not switching mid trip (above) should I start now or wait. She is waking up every day at 4AM- I wish we could start now...
She needs new clothes. This is a major ordeal. I need to plan a weekend day when I can have a babysitter for her sisters so her dad and I can go with her to the mall-- it takes two now.
I need a lift for the van. 80 lbs is past my limit.'
We need to go to the mobility dealer and see what our options are. Crap- our van has like 120,000 miles on it. Do we need a new van too? How are we going to do all this.
we have an appointment for the new chair fitting on May fifth. I have to put in for a day off. Husband too. Oh my gosh, will we have a new chair for the trip? AUGH- we have to rent a full size van -- oh, it won't have a lift. I wonder if she will fit her carseat still.
we need a new ramp in the back yard, it is too steep and she just fell down it.
she needs a ramp and deck around her make a wish tub.. we can't lift her in anymore.

So it is the little things, feeding, changing, reading, playing, hanging out, watching for seizures, etc. But also the big things.

And frankly, who has time to answer ten pages of questions about what she can and can't do? From three different case managers at three different agencies. AND-- her doctors and teachers also have to respond to the same inquisition.

We are so afraid of fraud that we are spending more on fraud prevention than on people with disabilities, I fear.

Pools-- not just for athletes

2009-04-10T07:19:00.000-07:00

Recently, our school district began the process of rehabilitating swimming pools that had fallen out of use. I asked the school board member who made the report what provisions were being made for accessibility. She did not know at the time.

The board, she reported, wanted to fix the pools for kids who play "water polo" and other water sports.

But... I thought, kids with disabilities use pools for adaptive aquatics. It's not like we have to build a pool for them but since we have pools that are getting a major overhaul, could we not be thinking of letting special ed kids use them?

Thinking about compliance is not the same as thinking inclusively. Here is a compare and contrast:

Inclusive: "wow, wouldn't it be great to have an aquatics program that included a full spectrum of water sports from athletics like water polo and competitive swimming to Physical Education like water aerobics, recreational swimming and adaptive aquatics?"
Compliant: "Well, we are getting the pools fixed for the water polo team, I guess we better make sure we comply with ADA even though we will hardly ever have a kid with a disability use it. Damn, that is a lot of extra expense."

The logical consequence of inaccessibility is a kind of ghettoization of people with disabilities. As a family we have learned that, if facilities exist at all, our daughter has "special places" that she can go (special often means "especially appealing" but here means "limited, isolated and hard to find") - usually a park in a system, or a school in a district or an entrance around the side or a restroom far away from the main bathroom.

Because we do not value kids with disabilities (as much, say, as we value athletes) we don't think of a one time expense to make something accessible, instead, we unthinkingly spend huge sums every year to work around inaccessibility or fix things that should have been done better in the first place.

The Americans with Disabilities Act (ADA) has moved this country toward but not to universal design. Universal Design is the result of inclusive thinking, not compliance. Our board member, whom I really do respect and value for her service, assured me that the new pool construction will comply with ADA. This is minimally reassuring. Because the district has not thinking about including students with disabilities but about minimum requirements.

Here is an example of the impact of this kind of thinking. Our district (under a consent decree, mind you) put in new, more accessible play structures (YAY!). Then put these on wood chips instead of mats. When families with children with disabilities pointed out that children with mobility disabilities could now not reach the new accessible structures (OOPS), the district responded that it was too expensive to fix. Parties then went back to court, the district lost and now has to rip out the structures and put in mats. Granted it would have been easier (and cheaper) to do it right the first time, but... they were thinking minimum compliance, not inclusion.

Why? Why spend all this money for a few kids with special needs?

Uhm, how big IS that water polo team anyway?

When districts break the law...

2009-04-08T08:08:00.001-07:00

I got a message from a friend that when thier district received a request for an outside AAC assessment, they denied it. Seems they think their assessment was (in the words of my friend) good enough for the kid. How frustrating, sad and infuriating.

WHAT NOW?

Whether or not you have a good relationship with your district, the sad truth is that districts do not always comply with IDEA, do violate the rights of children with special needs, and will wiggle with in the confines of the law to try to legally (but unethically) deny services that are difficult and expensive to provide. When this happens, and the problem cannot be resolved with simple, courteous communication with the district, there are processes and procedures in place that you should follow to protect your child.

ALL COMMUNICATION BETWEEN YOU AND THE DISTRICT IS POTENTIALLY LEGAL EVIDENCE for hearing.

The first thing to do is to make sure you understand your child's rights and the district's responsibilities. These can be found in the flyer your district gives you at every IEP and also online in the Parent's Rights documents (various translations are also online).

Quite likely you will read these and have more questions than you began with. That is good. Make a list. Then make a call: The Office of Procedural Safeguards (OPS) is there to help resolve problems in special education. Your tax dollars at work, and they work hard! OPS is a state agency that is little known but should get a customer service award. As a neutral party, they work with parents and districts; they really know their stuff and can often help resolve problems before they escalate. And when problems do escalate, they can help resolve them before parties go to due process. Which is good. When districts and parents go to court, everyone loses. Even if you win.

When you call OPS, explain that you are an unrepresented parent (that means you do not have an attorney for your child-- I'm assuming an attorney, if you have one, is answering your questions). Ask your questions, and they will help you to understand your child's rights and the district's responsibilities. If your district is violating the law (or in legal speak, "out of compliance") OPS will explain how to file a complaint, which will initiate technical assistance and monitoring of the district until the problem is resolved.

Here is what the law says about assessment rights under IDEA. (this is quoted from the Notice of Procedural Safeguards):

Nondiscriminatory Assessment How is my child assessed for special education services?

You have the right to have your child assessed in all areas of suspected disability. Materials and procedures used for assessment and placement must not be racially, culturally, or sexually discriminatory.
Assessment materials must be provided and the test administered in your child’s native language or mode of communication and in the form most likely to yield accurate information on what the child knows and can do academically, developmentally, and functionally, unless it is clearly not feasible to so provide or administer.
No single procedure can be the sole criterion for determining eligibility and developing FAPE for your child. (20 USC 1414[b][1]–[3], 1412[a][6][B]; 34 CFR 300.304; EC 56001[j] and 56320)

Independent Educational Assessments May my child be tested independently at the district’s expense?

If you disagree with the results of the assessment conducted by the school district, you have the right to ask for and obtain an independent educational assessment for your child from a person qualified to conduct the assessment at public expense.
The parent is entitled to only one independent educational evaluation at public expense each time the public agency conducts an evaluation with which the parent disagrees.
The school district must respond to your request for an independent educational assessment and provide you information about where to obtain an independent educational assessment.
If the school district believes that the district’s assessment is appropriate and disagrees that an independent assessment is necessary, the school district must request a due process hearing to prove that its assessment was appropriate. If the district prevails, you still have the
right to an independent assessment but not at public expense. The IEP team must consider independent assessments.
District assessment procedures allow in-class observation of students. If the school district observes your child in his or her classroom during an assessment, or if the school district would have been allowed to observe your child, an individual conducting an independent educational assessment must also be allowed to observe your child in the classroom.
If the school district proposes a new school setting for your child and an independent educational assessment is being conducted, the independent assessor must be allowed to first observe the proposed new setting. (20 USC 1415[b][1] and [d][2][A]; 34 CFR 300.502; EC 56329[b] and [c])

Now, about the problem of refused assessment. When a district refuses assessment request, they must give Prior Written Notice within fifteen days. This is from the Notice of Procedural Safeguards from OPS:

Prior Written Notice When is a notice needed?

This notice must be given when the school district proposes or refuses to initiate a change in the identification, assessment, or educational placement of your child with special needs or the provision of a free appropriate public education. (20 USC 1415[b][3] and (4), 1415[c][1], 1414[b][1]; 34 CFR 300.503; EC 56329 and 56506[a])
The school district must inform you about proposed evaluations of your child in a written notice or an assessment plan within fifteen (15) days of your written request for evaluation. The notice must be understandable and in your native language or other mode of communication, unless it is clearly not feasible to do so. (34 CFR 300.304; EC 56321)

What will the notice tell me?
The Prior Written Notice must include the following:

1. A description of the actions proposed or refused by the school district
2. An explanation of why the action was proposed or refused
3. A description of each assessment procedure, record, or report the agency used as a basis for the action proposed or refused
4. A statement that parents of a child with a disability have protection under the procedural safeguards
5. Sources for parents to contact to obtain assistance in understanding the provisions of this part
6. A description of other options that the IEP team considered and the reasons those options were rejected; and
7. A description of any other factors relevant to the action proposed or refused. (20 USC 1415[b][3] and [4], 1415[c][1], 1414[b][1]; 34 CFR 300.503)

PECS is old school

2009-04-02T15:53:00.000-07:00

I was talking with a colleague who is getting her special ed credential, and she was explaining that in her program they were teaching her about PECS. She was so excited about this as a way to communicate. She was excited, and I was...

furious.

PECS is so last year! I mean, sure it is a good early intervention, a great way to assess communicative intent and ability, but why are preparation programs and schools STILL focusing on low tech and no tech communication?

Because these interventions are nearly free. Sure, inadequate, inappropriate. But free.

You think PECS is enough? OK. Act of imagination. Go through a whole day without talking. The only thing you can use to get your ideas across is little cards with pictures.

After your experiment, go read about dynamic speech generating devices from PRC, My Tobii and Dynavox.

Kids who are using PECS are AAC users. IDEA protects a child's right to assistive technology, including AAC. And not just cheap, no tech Assistive Technology. Appropriate assistive technology.

PECS is a great temporary early assessment and intervention. But it is really old school.

Funding Disabilities

2009-03-31T16:10:00.000-07:00

I am in New York on business. Miss my kids.

And wow, am I tired of writing about Assistive Technology. If I had a magic wand, I would make all that magically better and move on. But, respite is essential, and I am taking respite from the topic.

I came across a lovely article in a local Brooklyn rag about funding challenges for a local organization serving people with developmental disabilities-- The Guild for Exceptional Children. This after a conversation with a very good friend about AT and the need to develop more developmentally appropriate software that interfaces with the My Tobii eyegaze system... to which he suggested with the sweetest intent: there must be foundations out there that would take that on.

It seems particularly ironic with this article in the paper today. And parents of children with disabilities know it just ain't so. There is not much money in services for disabilities. Not much of a market for specialized products like the My Tobii or the ECO. More attorneys work for districts blocking children's IEPs than work for children to secure their rights. It is always, all about money. Why should your kid go without so that my kid, who clearly will not amount to anything, should get a really fancy computer that helps her add and read Clifford? THAT is friggin' socialism. BAD.... bad socialism. YAY survival of the fittest. (Sorry, listening to Sean Hannity today in the cab at about 80 decibels bent me out of shape).

The thing is, it is easy, so easy for the right to say that every one has a right to life, but not so easy to say that everyone has a right to quality of life. Quality ain't cheap. Quality for everyone is socialism.

Here is my final, line in the sand, quid pro quo: I will concede to restrictions on abortion. Really, I will the instant, the very instant, that medical care, food, shelter and water and care by highly-qualified providers are the legally protected rights of EVERY child who has taken their first breath in our great nation, including every child with a disability.

Is that so much to ask? Just a little socialism, Sean. For the kids.

Comprehensive Diagnostic Centers

2009-03-30T17:54:00.000-07:00

Finding someone qualified to do an AAC assessment for our non-verbal, severely apraxic child was a huge hurdle, and the thing that slowed her services down most. In the three years of attempting to get an AAC assessment, no one on my child's IEP team or in the Alternative Dispute Resolution group told us that the California Department of Education has special diagnostic centers.

The centers provide technical assistance, support, case planning and ASSESSMENTS. Referrals must come from the district, SELPA or LEA-- but you can ask request that the district make the referral. (In writing, formal request for assessment, etc.) There are three centers: Fremont, Fresno and LA, so for most people this referral will involve some travel. But might be worth it. I know a child who received a very good AAC assessment from the Fremont center. From the Diagnostic Center website:

Services include:

Comprehensive, state-of-the-art assessment and educational planning services to assist local school districts (LEAs) in addressing the needs of their most complex special education students
Technical assistance and consultation in program and instructional design and delivery
Professional development opportunities for teachers, administrators, special education staff, families and service agency personnel

Eligible students are those students who:

are enrolled in special education,
are not progressing despite LEA efforts,
present a complex learning or behavioral profile, and
for whom the LEA requires additional diagnostic information to assist in defining appropriate educational goals and teaching strategies.

Although it would feel so good to go on a rant about WHY no one in my district volunteered this information or suggested this referral, I am not going to and instead just pass along the lesson learned. Hope it is useful.

AAC assessments

2009-03-28T17:47:00.000-07:00

What should an AAC assessment include? How do I know if my child has had an appropriate assessment. This site at YAACK has a great description of what should be included in an AAC assessment and some links to other sites for protocols and tools for assessments. Go check it out, then share your ideas and experiences. I know some of the hard mistakes with my child's assessment were:

positioning and support- they were often running trials with chairs and other equipment that did not support her, so she was wiggling and stimming and not able to access the speech device.
access- it took a long time to narrow her access method to eye gaze. for a long time, they wanted to stick with scanning and head pointing, both labor intensive and frustrating for my kid.
low balling-- the district wanted to stay always with whatever the lowest cost solution was. often these were so unmotivating or so in accessible that they made my kid look less capable. once we got her on the right equipment with the right supports, she took off.

I want to make this short so you click the link above. YAACK is great, and there is no point me recapitulating their great work here.

Well, go on ...

AAC IEP issues and goals

2009-03-22T15:03:00.000-07:00

Life here has been so busy, I have not gotten back to my blog in awhile. A couple of great comments about the last post helped me to decide to post my daughter's goals. While every child has specific goals that are relevant to the IEP, there are some common things to keep in mind.

All equipment should be listed on the face sheet of the IEP under Assistive Technology. Here's my kid's list

Big Mac switch
Step By Step switch with levels
talking photo books
My Tobii
Head wand (for painting)
Desk Top PC
soft ware: classroom suite, etc.

AAC services are a related service and should be listed with other services like speech and OT.
AAC users often have a team of providers. Here is my kid's team:

1:1 aide 5/days a week, 405 minutes a day (with listed competencies: willingness and ability to learn AAC devices and PC systems, skilled communication partner)
Occupational therapy 70 minutes per week (30 individual to assist with access and positioning, work at computer.)
physical therapy consult (to assist with seating, mobility, trunk stability, positioning and mobility)
AAC services 40 mins per week individual, 800 minutes per week group and consult.

Another issue for IEPs is that the goals have to match up to academic goals AND justify the device:

Augmentative and Assistive Communication (AAC) Goals for Student 2008
Due to severe apraxia associated with the diagnosis of Rett Syndrome, Student is non-verbal and is not expected to recover speech functions. Student understands conversational speech appropriate to her age according to her AAC assessment (Buzolich, 2008). Student has limited hand use and cannot use sign language or exchange pictures using her hands although she is able to select icons using her eye gaze. Student is a multi-modal communicator, using vocalizations, gestures, proxemics and aided communication with both no and low- tech devices. She began using an eye gaze accessible high tech device in September of 2008. (See IEP face sheet for equipment list). She needs more aided communication opportunities.

Student’s 2008 goals focus on building two areas of her vocabulary, core (high frequency, low content) vocabulary and thematic (fringe) vocabulary (nouns, new concepts and vocabulary introduced in instructional units). . The vocabulary selected for Student’s core vocabulary is based on clinical research that identified high frequency words used by all people across all contexts. The first one hundred core vocabulary words for school aged youngsters are:

I The To And A It Is
Was That In Of My You Yes
For Have Like Me Do On People
But Know With They What Am Be
Don’t At He We Think One Because
So When No Just About Had Words
Are I’m Not Well How Them It’s
Or Time Would Going Will Use This
There Work Say From Go Got Can
More Need Some Want Years All Help
She Then As Get If Most Now
School Which Who Out Their Actually Could
Device First Word Been Better Different Really
Things Two Did however

1.http://www.aacinstitute.org/Resources/ParentsCorner/SharingAndIdeaAlbum/Vocabulary/Core_Vocabulary_Presentation.pdf

Conversational language

Present performance related to annual goal: When given opportunities, Student uses social scripts recorded on her Step-by-Step and selects picture icons using eye gaze to participate in conversations with skilled partners, completing up to six two way communications in sequence. She selects single word icons in response to questions about who, what, when and where.

Goals and objectives
Annual
By June 2008, Student will use a core vocabulary of 100 words using her eye-gaze accessible aided communication systems including her high tech device to establish joint attention with her partner by requesting information (asking questions, requesting help) and relaying information about her feelings, the environment, or sharing a personal experience.

Criteria and documentation
80% accuracy
Work samples, Records of AAC specialist’s, teacher’s and aide’s observations

Academic Language
Present performance related to annual goal Student’s academic vocabulary is limited compare to her conversational vocabulary and her receptive language. Student needs exposure to rich and engaging academic content appropriate to her age and eye-gaze accessible speech generating device that will allow her to access all of her vocabulary independently and further develop linguistic competence.

Goals and objectives
By June 2008, Student will use a curricular based vocabulary of 100 words using her eye-gaze accessible aided communication systems including her high tech device to participate in math, Science and English Langauge Arts adapted (regular) curricular with a skilled communication partner. 80%
As measured by
Work samples, Records of AAC specialist’s, teacher’s and aide’s observations

The table below lists some academic vocabulary commonly found in textbooks. Select vocabulary from the list below and add to the list if necessary. Highlight words that Student has mastered.

Academic Vocabulary
© Jim Burke Visit www.englishcompanion.com for more information. Teachers may copy for classroom use.

A thorough survey of various textbooks, assignments, content area standards, and examinations yields the following list of words. You cannot expect to succeed on assignments if you do not understand the directions. The words fall into several categories, which are not identified on this sheet: nouns (e.g., What
you read or create); verbs (e.g., What the assignment asks you to do); adjectives (e.g., specific details about what you must do); and adverbs, which provide very important information about how to do the assignment. See the table below for a list of Jim Burke’s academic vocabulary.

1. abbreviate 2. abstract 3. according 4. acronym 5. address
6. affect 7. alter 8. always 9. analogy 10. analysis
11. analyze 12. annotate 13. anticipate 14. application 15. apply
16. approach 17. appropriate 18. approximate 19. argue 20. argument
21. arrange 22. articulate 23. aspects 24. assemble 25. assert
26. assess 27. associate 28. assume 29. assumption 30. audience
31. authentic 32. background 33. body 34. brainstorm 35. brief
36. calculate 37. caption 38. category 39. cause 40. character
41. characteristic 42. characterize 43. chart 44. chronology 45. citation
46. cite 47. claim 48. clarify 49. class 50. clue
51. code 52. coherent 53. common 54. compare 55. compile
56. complement 57. complete 58. compose 59. composition 60. concise
61. conceive 62. conclude 63. conclusion 64. concrete 65. conditions
66. conduct 67. confirm 68. consequence 69. consider 70. consist
71. consistent 72. consistently 73. constant 74. constitutes 75. consult
76. contend 77. context 78. continuum 79. contradict 80. control
81. convert 82. convey 83. copy 84. correlate 85. correspond
86. credible 87. credit 88. criteria 89. critique 90. crucial
91. cumulative 92. debate 93. deduce 94. defend 95. define
96. demand 97. demonstrate 98. depict 99. derive 100. describe
101. detail 102. detect 103. determine 104. develop 105. devise
106. diction 107. differentiate 108. dimension 109. diminish 110. direct
111. discipline 112. discover 113. discriminate 114. discuss 115. distinguish
116. domain 117. draft 118. draw 119. edit 120. effect

Requesting an AAC assessment

2009-03-16T07:33:00.000-07:00

This is the stance that earned me the title militant mom: Communications with schools are court admissible evidence and IEPs are legal contracts.

I learned from experience that a potential audience for every communication with our school district is the Office of Procedural Safeguards at the California Department of Education. So while I do try to keep the letters civil and polite (why not?) I also make sure they let the district know I know my child's rights, and they have all the i's dotted and t's crossed. Not that I want to go to court or file complaints, everyone loses when we do. But when the district knows that we know we can, and will, they are more likely to serve and we are far less likely to go.

The squeaky wheel gets grease, and my district trained me to squeak.

Below is a template I wrote, based on our letter requesting assessment for a couple of local families who find their child in the position ours was two years ago-- in a district that made conflicting claims: this child was not an AAC candidate, and the district is happy to keep experimenting with PECS and sign.

An AAC user fits this profile: receptive language higher than expressive langauge + intent to communicate. News flash: non-verbal children who use PECS are AAC users. These children have a right to assistive technology under IDEA.

That is just about all kids with autism. They should be assessed by a qualified provider.

Districts are not so excited about this. Why? PECs and sign are practically free (especially compared to dynamic speech devices) and about the only thing most speech therapists know and are trained in (getting a device and a full AAC system requires an AAC specialist, another expensive service).

We need to build knowledge of and demand for these services. They make all the difference. Our daughter went from her preschool goals and curriculum to second grade curriculum in a few months, once she had a device and support to use it. Here is the template:

____________________________________

[Your address here]

District Contact (principal, program specialist, etc)
District address

RE: REQUEST FOR ASSESSMENT
Child’s full name
Date of birth
School of attendance and grade level

DATE

Dear [insert district contact name here]

Under the Disabilities in Education Act of 2004, my child has a right to devices and services which allow her to access the educational curriculum in the Least Restrictive Environment (20 U.S.C. §1401(a)(25,26); 34 C.F.R. §300.308) (34 C.F.R. §300.308). This includes Augmentative and Alternative Communication (AAC) devices and services.

Our daughter has a diagnosis of Rett Syndrome, which causes severe apraxia. She therefore has effectively no use of her hands and is non-verbal. The prognosis is that she will not recover speech or hand functions with therapies.

Because our daughter uses {insert examples of her communication here, such as , proxemics/going to the thing she wants, sign, picture ions, gestures/pointing, reaching; utterances) to communicate we know that she has higher receptive than expressive language. She is by definition an AAC (American Speech Langauge-Hearing Association).

Because of her prognosis and the difference between her receptive and expressive abilities, her current systems limit access to her range of language and vocabulary. Further, her current systems require her to access communication with her hands, which is inappropriate to her diagnosis. Her current AAC systems are therefore inappropriate for her educational needs and inaccessible due to her diagnosis.

We request a medically based AAC assessment from a qualified outside provider.

We understand that you will send us an assessment plan that describes who will provide the assessment and how it will be completed. We also are aware that you have sixty days to complete the assessment and look forward to hearing from you soon.

Sincerely,

The parents of (insert your child’s full name here)

Militant Moms

2009-03-15T07:53:00.000-07:00

I was recently at a gathering of families of children with Rett Syndrome. My daughters' pediatrician introduced me as "our most militant mom, who managed to get an AAC program for her daughter." I laughed and then inwardly bristled. I've spent the weekend reflecting on that comment, offered I think, as a compliment.

I finally decided I felt saddened by this perception of militancy. First, I don't want to be unnecessarily aggressive, I am a teacher educator myself and value teachers and public schools. It is a noble enterprise that I value above measure. Public education is one of our most important civic institutions, along with the courts and the legislature. At least in my mind.

Not to mention that I am a boderline pacifist. At least a strongly committed diplomat.

Militant?

Militant? All I have done is used the legal tools that are my right to use as a citizen. I've used them not to extend my right to dump toxic chemicals into my local river, or protect myself from lawsuits related to dangerous products I made for children, but to ensure that my child's school complies with the law and appropriate education. If anyone wronged another in this case, if any one was doing harm, committing violence, it was not me or my child. So why am I considered militant? This image of me as the agressor was painful, especially coming from a friend and fellow advocate for children.

When schools deny or attempt to obscure children's rights that are protected under the law,this drives parents to use the law to assert those rights. To label this fair use of the law, which often requires enormous resources that families do not have, as militant, connoting that parents are the ones with a vast army, a huge budget, organization and dangerous tools is further obscuring the issues and once again, making children with disabilities and their families the antagonist in this drama.

Parents should not further internalize the negative connotations that go with the term militant. We are the protagonists, the heros of the story. The David against the giant.

Certainly not militant. Simply assertive, brave, courageous, committed to our children, loyal...

Obama repeating NCLB mistakes?

2009-03-11T08:05:00.001-07:00

One of the risks education faces is the same old, same old. Obama is so busy, what with a two front war, a great recession, and cleaning up the justice department that he does not have time to spec himself up on education. So, he appoints advisors whom he trusts and hears their point of view.

Unfortunately, he is listening to Arne Duncan, a born again charter school believer. Some charter schools have done some real good, but we would do well to remember a few things: most do not conform to IDEA and the ADA with the same vigor that regular public schools do. No matter what they claim, they often tell parents that the regular public schools can do better job. (A polite and almost legal way of saying we don't take your kind here.)

But the real problem about listening to Arne is that he is just wrong about some things, and bending the truth about others to persuade us to his way of thinking. Ideas like merit pay for teachers, privatizing schools and tougher standards are straight out of the last administration. It is time for a new approach-- how about putting all that money into teacher professional learning instead of bribery, I mean merit pay? How about reducing the number of student contacts from 200 a day for high school teachers to maybe 65?

Personally, I'd be glad if we just started a conversation around the question: What is quality education for all? Instead of: How do we raise test scores? How refreshing would that be?

A friend forwarded this critique of Obama's education speech from Gerry Bracy. I hope it starts a conversation about truth in advertising, Mr. Duncan. And makes Obama think again about what he knows about education and what he needs to learn.

Obama "talks about American kids being behind and his reference is obviously test scores. But then he talks about creativity in charters. But the NAEP (National Assessment of Educational Progress) studies indicate charters are behind public schools in test scores. You can't evaluate one set of schools by test scores and then another set of schools with another criterion. Public schools are just as creative (Eric Robelen, "NAEP gap continuing for charters," Education Week 21 May 2008). Duncan turned a lot of schools into charter schools in Chicago, but I don't think he ever came back to see if they were working any better.

By the way, being behind doesn't seem to matter--test scores don't related to global competitiveness. The U. S. is #1 as ranked by both the Institute for Management Development and the World Economic Forum.

"In 8th grade math we've fallen to 9th place." That's out of 45 nations. In TIMSS of 1996 (tests administered in 1995) 8th graders were in 23rd place out of 41. We've come a long way, baby. How come no one ever mentions that American kids do better in science than in math and no one EVER talks about how well they do in reading which is very well indeed? Various citations, too many to list and the one with the above stat is not online anyway, "Mathematics Achievement in the Middle School Years." It's only mentioned at the US HQ for TIMSS and PIRLS studies, http://isc.bc.edu. The reading studies, PIRLS (Progress in International Reading Literacy Study), CAN be found there.

"Just a third of our 13- and 14- year olds can read as well as they should." This is garbage in light of the international comparisons mentioned above. It is also garbage because the reference is obviously NAEP, and as I've shown over and over the NAEP proficiency standards are outrageously unrealistic. In fact, by the criterion Obama is using, no nation has more than a third of its students reading "as well as they should." Sweden, the top scoring nation also has about one third at NAEP's "proficient" level (Richard Rothstein et alia, "Proficiency for all: An Oxymoron"). "A Test Everyone Will Fail" shows this in an international context. I wrote that for the Post a couple of years ago. Just put title into Google. "Oh, those NAEP achievement levels." I wrote that for a publication of the National Association of Secondary School Principals for whom I write a monthly column. You can find it a bunch of places on line like www.nabe.org/press.Clips/clip110805.htm.

The Koreans might be in school a full month longer, but in PISA (Program of International Student Assessment), America has a higher proportion of top scorers than Korea. More to the point, given the size of America, America has more top scorers than any other nation. No one even comes close. We have about 67,000, Japan about 3,4000. Top scoring Finland's proportion gives them about 2,000 actual warm bodies. (Lindsay Lowell (Georgetown) and Hal Salzman (Urban Institute and Rutgers). "Making the Grade." Nature, May 1, 2008

There were some good things in the talk, but our president has bought too much of the same old crap about the state of our education, crap that has been spewed since 1957 (Sputnik), 1967 (urban riots--schools took the hit), 1977 (the SAT decline), 1983 (A Nation At Risk--followed by the longest economic expansion in history), 1998 (International test scores again), 2002 (No Child Left Behind) and 2008 (Edin08). In his inaugural address he said two thirds of the fastest growing jobs require extra education. What he didn't say was that those jobs account for very few jobs. For every computer engineer we need, Wal Mart needs 15 or so salespeople. Today he said "By 2016, four out of every 10 new jobs will require at least some advanced education or training." That's not what the BLS says. And what does "advanced education or training mean, anyway? It's a weasel phrase. By the way, we have about 3 newly minted, home-grown scientists and engineers for every new job in those fields and 65% of them leave those fields within 2 years of graduating (Lowell & Salzman, "Into the eye of the storm: assessing the evidence on science and engineering, quality, and workforce demand." www.urban.org/UploadedPDF/411562_salzman_Science.pdf).

I present a complete history of the continual and unfair criticism of schools in Education Hell--the Betrayal of American Schools which should be published next month.

Alas, the fear mongers--Bob Wise, Roy Romer, Bill Gates (who has said some REALLY dumb things), Craig Barrett, Lou Gerstner, etc., get the media attention. Guess it's cause they got the money. They certainly don't have the chops.

There's more, but I've probably overloaded you already. I'd be happy to chat about it. It's only 11:30 a.m. here.

Gerald W. Bracey
gbracey@q.com

No Child Left Behind might be left behind!

2009-03-09T08:50:00.000-07:00

If you have not read Mark's blog today, you should!

Arne Duncan is talking about No Child Left Behind, and though he is not quite saying what I would want to hear (No Child Left Behind is a failed policy, an albatross around our necks, needs to be scrapped, etc.) he is saying that in a Washington savvy kind of way, perhaps.

No Child Left Behind needs to be re-branded. Maybe even revised, rewritten. That sounds like new policy potentially. That would be good. Potentially. WE need to get involved.

What role does the federal government play in education anyway? How does it impact state and local education agencies? Besides mandating education for all children, including children of color, Native American children, and children with disabilities, federal regulations define how money is spent in education.

No Child Left Behind also regulated curriculum through departments like Reading First, that controlled what curricula could be purchased and used in schools. Reading First has bordered on scandal, with accusations that officers took kickbacks and prevented fair competition among publishers.

Reading First is an illustration of what is wrong with No Child Left Behind and educational policy in our current era. It is publisher focused, that is, a business enterprise, driven by business people who see the world as a market place in which problems are solved by buying and selling things. Not that there is anything wrong with that.

But it just may raise the wrong set of questions.

Maybe it is time to stop talking about NCLB altogether and decide what conversation we want to have going forward. Let's talk about a new vision for education, and leave the old brand behind completely. We don't need a new brand for an old corporation, we need a whole new model of business, I mean, school.

Robert's Park a Model of universal design

2009-03-08T13:26:00.001-07:00

Every week I try to post info about a local outing that is friendly to families like ours that have typical and disabled kids.

Robert's Regional Park in Oakland, California is worth a field trip, even if you are out of the immediate area. Rosemary Cameron of EBRP told me about the new play structure at Robert's while we were discussing accessibility issues during a frustrating visit to Black Diamond mines (not accessible, once you get out of your car in the handicapped space in the parking lot.)

But I went over to Robert's this morning on a reconnaissance visit on her recommendation and as I stood at the top with my daughter's service dog, I got choked up. Seriously, I was embarrassed to have tears in my eyes. But there it was.

If you, like we, have been to so many places and had to sit with your disabled child on the sidelines and watch others run off to play, you might too.

The structure is built on the hill and there is a long graded approach to the area. The whole thing has deep rubber mats below and full ramp access to the top. Accessible slides and a modified climbing wall. All the signs have Braille and inscribed alphabet signs and can be read by touch. There is even a cradle swing for big kids. If you want to spend the day, there are picnic grounds. The pool is accessible as well, according to Rosemary, though it was closed while I was there.

All I can say is thank you EBRP! This park is a model for the nation. If you want to play, you should go. If you want to see how all parks should be built, you should go. If you are a superintendent or a board member, please go. Landscape architect? Go. Park Board member?

Well, you get my point.

That's where we are getting ready to go, right now.

Low Incidence Funding

2009-03-06T09:30:00.001-08:00

Taking care of students with low incidence disabilities is, well, expensive. And school districts labor under the weight of the expense. (IDEA funding is really important!) Recently our board president mentioned that the special education budget is a quarter of the whole annual budget. This figure surprised me, since our special education population is 13% (roughly) of our total population. So? How is that good?

So that means for our district SpED kids are only twice as expensive as kids in regular education.

I actually know my kid is far more than twice as expensive. And I want to support our school to support her, and my two typically developing kids too. As they close schools and libraries and fire hard working employees and cut athletics and electives, I feel the anger as much as anyone, and some guilt that my child with a disability does not get enough funding to support my district's services to her. Services which are and ought to be protected by law. No one would school her without the law, as history already has shown.

Low incidence disabilities are defined by California law to be "hearing impairments, vision impairments, severe orthopedic impairments, or any combination thereof". In our district, that is a lot of kids. We have a whole program for kids with hearing impairments, visual impairments and several special day classes that serve kids with severe orthopedic handicaps.

Low incidence kids receive low incidence funds to help with specialized equipment and services such as specialized books, materials, and equipment and services such as interpreters, note takers, readers, transcribers, and others.

That's great right?

Wait until you see the funding formulae:

Local agencies (districts and SELPAs) that serve 25 or fewer students who have low incidence disabilities will receive base funding of $2,000, plus $29.85 per student. Such SELPAs are designated as “sparse” and are eligible to apply for additional funding to serve students with low incidence disabilities. SELPAs serving 26 or more students who have low incidence disabilities will receive base funding of $5,000, plus $29.85 per pupil.

I'll guess that we are not a sparse SELPA, so notice that there is no provision for additional funding for us. Still, isn't $5000/26 + 29.85 kind of, well, enough?

If we had 26 kids, that would be $222.16 per kid. With more kids, it is less per kid since the $5000 is divided among the total. So, how much does a kid with low incidence disability need?

I'll take my kid for an example. Did I mention that with her new computer she is doing grade level work? That they discovered she can read? She can add and subtract? Here are some of her needs as annual expenses that are above and beyond what her sisters need:

$30,000 a full time assistant to help with toileting, feeding and choking precautions, seizure management and computer work
$900 (amortized over three years) for a positioning chair for feeding and computer work
?? bussing to her school, not our neighborhood school, which has no program for her
$15,000 (amortized over five years and shared among three students) an eye gaze accessible computer for math, reading, spelling, science, social studies
?? and associated software
$50,000 nurse (shared among several kids) to administer seizure medications (required by laws lobbied for by the California School Nurses Association, not medically necessary)
special day class (reduced class size, increased teacher cost)
$150 Head pointer for painting, drawing and art

So the good news? The head pointer was covered.

The bad news? Kids are being left behind. Schools in California are shamefully underfunded and the governor's budget this year is a travesty, a cruelty, an abomination. But things would be so much better if IDEA were fully funded and if everyone had a realistic idea of what special education really costs.

It is not that special education is horribly inefficient and wasteful, it is really that there are quite a few kids with extraordinary needs that are very expensive.

So, as I have said many times before, it is a choice. Do we or do we not support special education? Because support means fund. As in provide for the support of, as in provide material support for. Not cheer from the sidelines, not be a fair weather fan. Not claim to love "those beautiful kids" and support their rights to a free and appropriate education and then complain about how expensive FAPE is and look to cut the budget. not say one thing and do another.

Not to act all shocked and appalled that special education costs twice what regular ed does when you KNOW how much it costs. Exactly.

Did I mention my daughter can read? How much would it be worth to you to discover that about your eight year old child, who had not been able to talk since she was 19 months? What would you pay to get a Valentine's card that she wrote specially for you, herself, on her computer? What would you pay to hear your eight year old for the the first time EVER you heard I LIKE MOM? What would you pay?

Support the child, fund special education. They are worth it. If you don't think so, come meet my child, then tell me so.

Accessibility in Yosemite

2009-03-02T07:57:00.001-08:00

Two weeks ago I went to Yosemite with my mother, who has Parkinson's. It was her Christmas wish to visit Yosemite in the winter-- a place she had spent many happy hours in her youth but never seen in snow.

Here is my rundown on accessibility in our flagship national park, revised based on experience. Ironically, when I asked about accessibility I was told by a staff member who had clearly been trained to respond to this, "As a national park, we are a federal government agency and comply with all aspects of the Americans with Disabilities Act."

With over 4 million visitors a year, many of these foreign nationals who come from countries with no legal status or protections for persons with disabilities, Yosemite is an opportunity to show the world a particular American strength: Universal Design.

For all the urbanization, YNP falls sadly short of the vision of ADA. Just like home, urban does not equal accessible.

F: YOSEMITE LODGE AT THE FALLS
F: PARKING/ENTRANCE WALKS: The handicapped parking is located across the bus loading drive-through from the entrance to the lobby, and the curb cuts take one across a wandering path with no cross walks. At one point we started through one curb cut to cross the street and had to look for the other, which was located diagonally across but not marked. The handicapped entrance is what my brother in law Jim used to resentfully call a "servants entrance" about a 50 yard detour away from the front steps up a ramp that is out of sight of the public. The Awahnee entrance is much better.

F: WALKWAYS: It had been snowing when we arrived, and while the stairs and walks for the general public were shoveled, the ramps and curb cuts were not. When checking in with my mother (in her chair) I explained that we needed a room we could access (I was thinking ahead of the snow). The nice young man at the counter assured me this was and sent us across the road, through a parking lot and down snow covered walks to a room several hundred yards and a few snow banks away. We came back and requested a different room. When I suggested we should preview the room to see if we could actually get there, he was less than helpful. The rooms are all located in separate outside buildings with few covered walks, so shoveling is essential. I crossed several areas by running my mom's chair at full speed through the snow and shoveled our own walks into our room.

D ROOMS: One can reserve an accessible room, which we did not because the only accessible rooms have only one queen bed and a roll away and like people with a disability, we were traveling with children. The regular rooms are completely inaccessible, the doors to the bathrooms are to narrow even for a walker. The showers are inside standard tubs and there are no grab bars anywhere.

C CAFETERIA: The chairs are too close in the dining room. No one offered assistance, in spite of the fact that we clearly needed help. Many things are too high to reach.

BIKE TRAILS AND ACCESSIBLE TRAILS:
B+: The new trail to the Yosemite falls bridge is very nice, as is the valley floor trail from the lodge into the meadow. The only issue we had is, once again, the curbcuts from our rooms were missing, so that we had to take a long detour to then roll through the parking lot before we could find an accessible entrance to the trail. Everyone else? Cross the street in a cross walk. BOOO.

AWANHEE:
B+: We went here for dinner one evening. Surprisingly, this historical landmark was the most accessible in the park. We did not see the rooms, however. In spite of the fact that the only accessible bathroom was up the elevator (unpleasant but not uncommon.) There was an accessibility map in the lobby, unlike in the lodge, showing where all the accessible trails and restrooms are. The staff were respectful and helpful, a difficult balance to strike, in my experience. Even in the national parks, It is good to be wealthy, especially if you have a disability.

BADGER PASS:
F: Now, if you have not a disability yourself, you might say a ski area does not need to be accessible (which this is absolutely not- stairs everywhere, no ADA bathroom, and of course, snow and no covered walks). We did not even find ADA parking. But if they offer adaptive ski lessons (call two weeks ahead)- don't you think they would make the lodge and ski school accessible? Good thing my mom opted not to come up and instead hung out at the lodge napping and drinking hot chocolate. Too bad she did not get to see her grandchildren ski. It would have been nice if she could have hung at the ski lodge and watched from the window.

CURRY VILLAGE:
F: We could not even get into Curry, due to the snow. Or the ice rink (again, she wanted to watch her grandkids skate for the first time). I'll have to go back in summer to evaluate this part without snow.

SHUTTLE BUSSES:
C: Thank goodness they have kneeling busses. And wheelchair spaces. The driver was very nice- always a plus. Unfortunately, she did not know how to use the wheelchair tie downs, and when I showed her how she explained that she had asked when they were trained on these new accessible models and the trainer told her she did not know how herself, and did not think it was important! How lame is that? The park service invests in new ADA compliant busses and then does not properly train the drivers in their use.

So, for all the urbanization of this natural wonder, there is little to recommend it in terms of accessibility. That is a shame. So much of the development in the park is to make it seem more familiar, less strange and wild-- really to make it seem more accessible to the masses of able bodied people. It is tragic, in my opinion, that this development has made it more like home and less of a natural wonder, a place to connect with the serene, the tranquil, with wild. I have always resented the intrusion of fast food, ATMs, markets full of fake indian goods made in other countries, many low quality restaurants that highlight the worst genres of American food. I would resent it less if the city were actually were accessible, because at least accessible development would be for the purpose of making Yosemite the experience that Muir and Roosevelt meant it to be, a "tonic for the soul", instead of simply familiar in all the worst ways.

Universal Design

2009-02-27T07:10:00.001-08:00

Universal Design is a design, concept or set of tools that allow the broadest participation of people with different needs. Curb cuts are often used as an example of universal design. They were intended for wheelchair users, but they also support people who use canes or walkers or people who do not use assistive technology but who may have trouble navigating a step. They also benefit parents with strollers, runners, people making deliveries with carts. Most importantly, they do not hinder anyone.

Universal Design for Learning applies this to learning environments like classrooms. Some examples of Universal Design in Classrooms include arranging classrooms with enough space that wheelchair users can maneuver. Others are more subtle, like using dry erase boards with colored background (instead of whiteboards) to support visual discrimination or providing stretch breaks frequently to support learners with ADD or sensory integration. Many supports, are invisible but allow students of diverse abilities to participate in a single lesson, such asa teacher who provides multiple texts with different levels of difficulty on the same topic.

Laptops in schools have the potential to provide universal design supports. With these tools, learners could automatically change font size, use dictionaries, translation and transliteration tools, and research topics to build background knowledge and vocabulary. Students who already use spelling prediction, voice activation or alternative access methods such as single switch scanning would fit into the classroom almost seamlessly. Students could carry copies of all their core subject texts in a single device, since most publishers now offer e-textbooks.

Clearly laptops have a great deal to offer. But the important thing to remember about universal design is the instructional component. Buying laptops for every student has had mixed success across sites. The biggest risk would be forgetting that teachers need ongoing training and support in not only using the tools well, staying current with technology, but more importantly in developing new methods of instruction.

Buying laptops for every student without a strategic plan to support instruction would be like investing in gymnastics equipment when none of the staff has ever taught gymnastics.

Yet in spite of this caution, I remain very optimistic about the possibilities for laptops in school. The potential it has for modernizing our 19th century educational model and opening up access to a wider variety of students is enormous.

Red Tape and competing interests

2009-02-26T14:43:00.000-08:00

So much talk about budgets lately is concerned with making things more efficient. Gosh, I hope someone besides me is thinking about the states departments of developmental disabilities. In an effort to be more localized and efficient in distributing resources to persons with developmental disabilities states have created nightmare scenarios for parents and caregivers.

We are parents, not policy experts, educational consultants, attorneys, occupational and physical therapists, case managers all rolled into one convenient package.

Which is what I have had to become to care for my child's agencies. I resent caring for her agencies-- it takes my time from caring for her.

Here is a small example of how we find equipment for her needs. Recently we have tried to get a potty chair-- mind you she is now 70 pound eight year old, so this is not a trip to Target or Babies R Us. We have entered into the alternate universe of Durable Medical Equipment, a universe where none of the normal procurement rules apply.

First, I contact her case manager (CM) at Regional Center (one of forty private non-profit contracted by the California Department of Developmental Disabilities to case manage "clients" like my girl. Mostly, they distribute money and try to obscure what services they do actually provide as far as I can tell.) My kid is a regional center client because of her diagnosis.
The CM tells us there is a one year waiting list to see the regional center therapist who can evaluate my child's need. I suggest that is unreasonable.
The CM suggests we see her private doctor.
We write a letter to her Kaiser doc request a prescription for a potty seat.
The doctor sends us to the physical therapist (PT) at California Children's Services (CCS is run through MediCal) to get a recommendation for equipment.
A month later, we see the PT.
We fax the recommendation to the doctor, who returns a prescription to the PT.
The PT submits the prescription to Kaiser for the necessary denial letter. (We are already way over the DME limit for the year with a new wheelchair and leg braces. And, Kaiser does not do potty chairs.)
Six weeks later, we receive the denial letter from Kaiser.
And fax it to the PT, who sends it to a private contracted vendor.
The vendor submits the bill to Regional Center.
At this point, Regional Center should pay for it, as the funder of last resort (their legal obligation).
But since I already applied for MediCal at the request of the case manager, Regional Center denies the purchase and says we have to go to MediCal first.
Fortunately the case manager at Regional Center deals with the CM from MediCal.
Six months after applying we get an approval for the MediCal case and a temporary MediCal number, which I submit to the vendor.
It has now been nine months since we first began trying to get a potty chair.
The vendor submits to MediCal, and receives a denial from MediCal saying there is no medical indication for a potty chair.
I think I should call my doctor and discuss a prescription for anti-rage medication.
I contact the case manager at Regional Center and tell him MediCal denied the purchase.
He sends an email back explaining that I must now submit both a letter from Kaiser AND MediCal before Regional Center will pay for it.
So now I have to write to MediCal and try to get the denial letter that I never received so that I can forward it to Regional Center.

This is the second time we have tried to get a potty chair. I first began this process two years ago.

So, what have I learned? That the state pays a full time case manager at Regional Center and another at MediCal two people whose job it is basically to save money by denying services to my child. That Kaiser pays a claims adjuster aalso to deny services to my child. Three people involved in denying services-- work that does nothing but suck money out of the system that could be going to direct services to kids like mine. And the account manager at the vendor is paid to navigate the same denial of service loop-- another waste.

And it only gets worse when the school system gets involved as a third party denier. It took three years and an attorney to get a speech generating device because everyone wins by denying-- except the child, but who cares about them?

The only necessary people in this loop are the doctor and the physical therapist. They should be able to write a prescription, sign and affidavit and submit directly to the state. Sure, some fraud might get through, but could that really outspend the huge system that has grown up around preventing fraud? How many potty chairs could slip through before we outspent the salaries of two case managers?

There has got to be a better way. All I know is this: raising a child with a disability is hard enough without the systems that are supposed to be supports making life harder than it is already.

I hope that this is read by Diane Feinstein, Barbara Boxer, George Miller, Tom Torlakson, and Mark DeSaulnier. In fact, I am going to forward it right now.

Right after I call about those meds. And resubmit the two denial letters. And start working on a new wheel chair. And a lift for the van. And...

The trouble with Jerry

2009-02-19T09:20:00.000-08:00

I was reading the letter from the Academy Awards Committee to Disability Rights Advocates this morning and reflecting on the trouble with Jerry.

The trouble with Jerry, I think, is that he straddles generations of change and holds the uncomfortable position of doing better than our parents and not as well as their children.

Not unlike Frederick Douglass and Susan B. Anthony. For years they were friends and colleagues, a former male slave and a white woman, both disenfranchised, both unable to vote or own property. They worked together on full citizenship through constitutional amendment.

Until the day that Douglass, seeing the end of the Civil War and the passage of the 14th Amendment as an opportunity that would never again come, backed the Fifteenth Amendment. For which he is a hero. But he supported the final amendment against the advice and will of his long time political partner and friend, Anthony, who worked on this amendment with him but withdrew her support. Because, in its final wording, the fifteenth guaranteed the right to black men. And not a single woman. Douglass had lobbied with Anthony for that amendment to include women, but gave up. He knew that it would not pass if women were included in this expansion of the right to vote. He turned his back on women in order to make one milestone in the fight. These lifelong friends never spoke again.

I have often wondered about this historical moment, from the point of view of the people involved. Was Douglass right? Was it necessary? Would lack of compromise then have set the whole cause back? What if the fifteenth amendment had included language protecting women and not passed? Was Susan right to stick by her belief that rights cannot be gained incrementally? Or was her role more important-- was her vigorous campaigning and militant opposition part of what pushed the struggle forward?

I never wondered if Douglass was a hero-- he was.

Jerry is out of step with this newer generation of parent, caregiver and adult with disabilities who grew up with ADA. Most of use have lived with a different reality than his generation: no matter what anyone thinks about people with disabilities, they all have legally protected rights.

Jerry spoke to, and often for, a generation of adults who came out of world war two horrified by the genocide but still harboring sympathy with eugenics. He spoke to a generation of adults who never built accessible ramps so that people with disabilities could access public institutions, but instead built public institutions to prevent people with disabilities from living in the community. He spoke to a generation that heard things like "there is no hope" and "give the child up." To a generation who had little sympathy for people with disabilities, developing sympathy, empathy and compassion was a powerful first step that allowed them to consider throwing open the doors of state hospitals and keeping children with disabilities home. And to look for cures.

Cure is such a common word now, cure for AIDS, cure for autism, cure for lymphoma, run for the cure. When Jerry began his work it was not so. If you went around with your pledge sheet and asked for triathalon sponsors, people would have been puzzled- why? Jerry made us see how shameful that was.

Jerry claimed kids-- Jerry's Kids-- with a disability that the medical community disclaimed and described as terminal, invalid and disabled. In response he imagined Jerry's Kids? That is courage.

Douglass was a hero, even with the whole 15th Amendment-not-including-women thing. Mark Twain was an incredible voice against racism, even though he used the N word. Jefferson expanded civil rights exponentially, even though he was a slave holder. I am a good enough mom most of the time, even though I have my moments of fatigue, my secret wish for her to be cured, to be other, to be like us-- not disabled.

Jerry Lewis did not invent the disabling language of his time, or the view of ability and disability in the post war era. Jerry urged the able-bodied world to feel remorse and shame toward themselves and sympathy toward people with disabilities. It only feels weird now because we are so far from that time when people responded to disability with revulsion, aversion and avoidance. Because of the sea change in our concept of ability, today we (and I mean those of us who are typical, majority or non-disabled) can feel the many things that come with friendship with people of all abilities. Rather than pitty for the stranger, we feel love and hope for the relative and friend.

In his own best way, and his way accomplished a great deal.

Thanks Jerry. And, by the way, please don't heap sympathy on my kid. She may even see a cure. Until then, she is just right the way she is. It is the only way she can be.

Spare the fetus, spurn the child

2009-02-12T15:00:00.000-08:00

A round of the common cold left all of us cranky and couch bound this past week, and my daughter with Rett Syndrome in the hospital with dehydration and low blood sugar. From the same cold. A harsh reminder of her medically fragile position among us. Now she is better, and I am back to posting, reading, thinking and learning. Grateful to pull through another crisis and see her happily on her way to school this morning where she will be greeted by buddies and work on her most amazing computer.

Of Arne Duncan in Ed Week this week: "He’s not been a great supporter of special ed. I don’t think he dislikes special-needs kids; it just wasn’t on his radar screen during the time he was here,” said Rodney D. Estvan, the education outreach coordinator for Access Living."

I read this Ed Week after spending another normal day at the hospital. I wondered, why is this not on the radar? No one would say don't treat her. No one would advocate I not spend the money on the ambulance, the emergency room visit, the IV fluid. Not many people would say, just let her die.

But no one wants to pay for school either. And I wondered, is it really just that special education is not on the radar? I am sure that if Arne Duncan or my local board members were there with me, they would have been compassionate. I am sure that seeing her wake up, and give that brilliant smile would have touched them as it did everyone else.

Why is the emergency so compelling, and the day to day is so boring? It is no less important to toilet train her (at six years old) and to teach her to use her PECS icons to ask for things rather than scream, and to assess her need for a computer than it is to give her IV fluids when she is sick.

And it made me wonder, this experience, juxtaposed with the Ed Week article, do education policy makers just not have enough contact with special needs kids? Is it really as simple as not getting it? I really prefer this theory over the malice and ill will scenario.

I would like Arne Duncan and every policy maker in the country to sit down and reconcile a double bind our politics has created.

On the one hand, we as a nation loathe abortion, so much so that a substantial group of people would like to see fetuses with identified genetic mutations legally a protected class of citizen. Spare the fetus.

On the other hand, many of the conservatives who hold this anti-abortion position are the same people who are crying out to remove IDEA funding from the stimulus package, and who strip Medicare for the disabled. Special education and children with disabilities are seen as an encroachment, an entitlement, a burden. If special education is seen at all, if it is on the radar, it is because "it" is too expensive. Policy makers seem to forget that "it" is made up of children. Choose life, but spurn the child.

These positions together? Spare the fetus, spurn the child.

It is time that our kids get on the radar, not just when they are at death's door, but on the normal days too. What we do in between emergency room visits matters too. And, surprisingly, it matters more. It makes a difference not just that they live, but how they live.

How about: Spare the fetus, support the child. I think that will be my new motto.

Look out Mister Duncan, we intend to enter your air space.

Upside Down

2009-02-07T09:11:00.000-08:00

Education is currently upside down. The value of the goals we hold for students is less that the value of what they can learn, and no matter what we pay into the goals, we cannot get there from here.

Since the reductionist view of education took hold under No Child Left Behind, education has focused almost exclusively on deficits- on what students cannot prove they can do. This has led to a number of unintended consequences. These impact special education and other students who share the below and far below basic categories disproportionately but they impact all of schooling as teachers and administrators are encouraged and even bullied by policies and fiscal constraints that force them to keep their eyes on students' failings and ignore students' strengths.

For example, a student with autism has a curriculum that is focused primarily on language and social skills-- things we as non-autists, notice that they "cannot do."

For reasons we do not fully understand, people with autism develop expressive langauge, both verbal and non-verbal, very differently from those of us without autism. Thus, language and social skills are considered the "core deficits" of autism. It used to be thought, in the fifties through the seventies that this was a form of childhood schizophrenia, induced by the trauma of being rejected by the mother during pregnancy. This has long been abandoned as a theory but has been replaced by other behavioral theories focused on developing behaviors that will help the child pass as normal. More recent neurological studies have shown that the brain of autistic children is unique from ours and that their recognition and processing systems for non-verbal and verbal language may be just quite different. So getting them to pass as one of us helps? Well, it helps mostly us. It helps us feel more comfortable with them.

This is a radically unpopular point of view for a mother of an autistic child to take, I have learned in conversations with friends and professionals. But I have been reading many, many self-reports from autistic people, and hearing from my own daughter now that she is able to use her speech device. My own brother had a sensory integration disorder and his suicide confirmed what I am about to say: even when autists pass as normal, they are always painfully aware that they are different.

A friend of mine has a child with autism who is non-verbal. He is grinding his way through a very limited behavioral curriculum and almost grade level work in math. But, he is a genius with computers. When computers break in the classroom, they turn to this eight year old to reboot the system and get them working.

What if he stated working on computers and mechanical things along with his applied behavioral therapy? Sure, toilet skills are critical, who could argue with that. Especially if you have had the privilege of changing a diaper for a nine year old in a public restroom, you know that is an important skill. But isn't building confidence, joy, a sense of mastery over something, curiosity, interest, and potential future job skills as important?

I have another unpopular theory about this. His teachers don't know how to keep up with him. The system is so dysfunctional that it needs him to be disabled. Because if he were actually better at computers than his teachers, they would have to change the way they teach-- and learn more about computers. What if this funny, brilliant boy spent his day fixing computers, programming computers, doing research on the net? What else could he do? What would we discover about his self regulation, his ability to interact and his behavior if he were allowed to study things of interest, which he was good at instead of being shoehorned into a mold which he will never truly live comfortably in? Could we, for example, tolerate or even encourage stimming instead of trying to extinguish it? Stimming, the hand flapping and noise making which many autists report help them organize and calm themselves, may be essential to the autist feeling comfortable enough to work, think and interact.

Imagine a school-- a whole world-- in which a child with a disability could be more successful and masterful than his or her teacher in certain areas, and where ability, not the disability, were the area of focus. What would that look like for your child?

Could we ever let go of our own fears and prejudices enough to create a world in which these young people are allowed full membership and participation? Could we let them be truly differently abled?

Imagine an IEP goal that read: "The student will be able to use an appropriate stimming method (hand flapping, bouncing, rocking) of choice to focus and calm herself during work sessions."

2009-02-04T11:46:00.000-08:00

Here is a template for writing in support of the IDEA funding in the stimulus packet, up for a vote this week in the senate. You can copy and paste this text, customize it and email it to your senator, the links are in the side bar on this page. Include personal stories, information about how special education supports your child and family, and PICTURES if you have them.

California and a few other states may attempt to reduce general fund allocations to special education in the amount it receives in new IDEA funding. I included language about this in paragraph two below.

Our California senators are both democrats, and expected to support the bill, but they can use your arguments, information and pictures as they discuss this with colleagues on the other side of the aisle and try to rally the needed votes. In my personal letter, I will include images of my child using her (very expensive) speech device and a list of people employed in her program as well as information about cuts under consideration in our district. Here is a generic template.

Please feel free to share your revisons in posted comments.
__________________________________________

Honorable Senators Feinstein and Boxer,

I am writing in support of the funding for IDEA in the stimulus packet. In spite of objections from the republican party that special education funding will not stimulate the economy, I know from personal experience that it will. Special Education provides jobs for teachers, classroom assistants, custodians, bus drivers, nurses, therapists and many others. In fact, if we are trying to create jobs, restoring funding here will provide more jobs here than in regular education because of the number of services and small classes needed by special education students. In addition, fully funding IDEA now, for the first time since the initial authorization, will allow states and local agencies to use unrestricted funds to rehire teachers and staff laid off in the current economic crises.

I encourage you to continue to support this bill and to extend my appeal, on behalf of my child, to your colleagues and friends in the republican party. Like the republican party members, I want to be sure that this package does have a stimulus effect. Please include language that prohibits states from reducing existing contributions to special education if they receive new IDEA funding.

Jobs are stimulus, and our communities are experiencing huge layoffs in education as school districts struggle to balance budgets slashed by mid-year budget cuts. Keeping teachers, classroom assistants, nurses, bus drivers and therapists employed will slow the foreclosures in our community and keep people out of the unemployment lines.

Please, for our community, for our country and for my child, implore the republicans to join you in funding IDEA now. It is not just right to finally keep this long unkept promise, it is the right time.

Thank you for your service to our country.

Apprenticeships, not electives

2009-01-30T09:24:00.000-08:00

Recently posted on the blog operated by members of my local board of education was a comment about electives. Why Home Ec? It was a reasonable question and if we really took it up, we could have a positive impact on regular education, special education and the community.

An example of an elective that makes sense could be designed after a new program discussed in Solar Today: Training the green collar workforce. This program is being replicated in a few places around the country, included west Contra Costa County. We should jump on this wave now and paddle hard, or we will miss it.

Electives-- introductory courses that offer breadth and opportunities to explore a new field or discipline-- should be offered early in elementary and middle school. They should include REAL things like courses in electricity, plumbing, carpentry, child development, public health, water treatment and other non-traditional but essential topics that can lead to meaningful work with living wages.

By high school, "electives" should be phased out and replaced with courses of study. A student completing a course of study in electrical studies, for example, would have work experience and be ready to enter any number of union apprenticeships, which require passing grades in algebra and understanding of physics. A student completing a course of study in science would graduate with the experience and prerequisites needed to enter majors in pre-med or pre-engineering. Either way, students would have a solid foundation that prepared them both for meaningful work and a changing workforce.

We should have the courage to reinvent the remedial "work" mandated under the guise of NCLB-- math work that is in complete contradiction to every finding in the TIMMS study and reading work that contradicts research about adolescent literacy. Instead, math course work should be strongly linked to the science curriculum and math studied for what it is, a language that describes real world phenomenon. Reading should expand what readers know and want to learn about relevant and engaging topics.

This quality of education is currently denied to students who score in the "lower" half of the tested students. These students reasonably may decide they have better things to do than pretend to learn from this below basic education. Why would any student continue to manipulate numbers on a worksheet in order to prove their worth to a system that has written them off as "low performing"? Why do we pretend that they have to read things like "Doggie and Hoggie like Froggie" before they can move onto more complex things (like IPOD directions). Given the opportunity to see concepts brought to life while doing complex things like wiring solar systems on existing roofs can catapult these "slower" kids into income brackets that their teachers will envy and position them to do work they are worthy of.

It is time we cast off the classist and classical education of the 19th and 20th centuries and start treating all education as if it mattered. Maybe then all students will experience learning, and no one would leave school behind.

Creating High Risk Pregnancies

2009-01-29T07:53:00.000-08:00

The New York Times opinion page ran an article about the octuplets born in California. Doctors weighed in on the consequences and advisability of these kinds of premeditated high risk pregnancies. Considering that one of the reasons congressmember Issa gave for the entire Republican party voting against the stimulus package is the funding for IDEA, I found this timely, and ironic.

Decisions like this one between this family and their physician team will lead to consequences for all of us as we struggle to balance our moral convictions, civic obligations to people with disabilities, and national ambivalence toward taxes and social spending.

Starvation Rations

2009-01-28T08:13:00.001-08:00

In The Good German, Joseph Cannon describes how the Nazi's experimented with rations in the camps. Their goal was to spend the least amount of money on food rations as possible, providing just enough to keep the condemned prisoners alive and working. The questions they asked were things like: if we spend enough for a hundred more calories a day per person, is that more cost effective than increasing the rate of executions and arrests?

The current budget crisis is not the board's fault. The state of California, now in 47% place in terms of per pupil spending, bested by places like Arkansas, Tennessee, and Oaklahoma that have much lower costs of living, has placed its children on starvation rations. The question seems to be: What is the minimum amount we can spend and still keep most test scores high enough that people can still blame socio-economic status and parent's level of education and not the state for our crappy education system?

The problem we have in California is not a spending problem but a revenue problem. All the things that we know work-- qualified teachers, reasonable class sizes, preschool, engaging electives, art, music, sports-- all cost money. More money than we are spending. My yearly property taxes do not cover the per pupil allotment for my children, and as I have written before, this also covers many other vital services.

Here is what is needed: grownups. Responsible grownups who work hard and do their civic duty to pay taxes. Even maybe set aside the expense on the new Wii system or the leather interior on the new car so that we can fund our schools.

FIRST: the great state of California needs to triple it's per student allocation right away to bring our spending in line with New York-- a state with a high cost of living and a flagship educational system.

SECOND: The federal government needs to fully fund IDEA ongoing and increase block grants for states for educational expenses. ALL underperforming schools under NCLB need to be given more freedom to innovate and more funds to work with.

THIRD: Private fundraising by schools and districts (like foundations and PTAs) grossly contribute to the inequity between areas with high concentrations of poverty and ours, with relatively low concentrations of poverty. This is true within our own district, but more so across districts. Here again we need grownups, citizens of a proud democracy who believe that equitable schooling is the birth right of every child in America. Without this commitment from all parents and communities to every child in every community, the first two remedies will be what they have been historically: starvation rations that are supplemented by local communities that can purchase extra rations and starvation for those that can't.

And we blame the kids, the teachers and the schools for the unequal test scores.

FUND IDEA IN THE STIMULUS PACKAGE!

2009-01-27T08:52:00.001-08:00

I received this from a friend via email and am posting as is. Get moving people! Go go go!

Call to Action—Support IDEA Special Education Funding in Federal Stimulus Package

Congress is currently considering legislation that would provide a massive influx of funding for special education programs. In addition to proposed increases to Title I, School Construction, Educational Technology, and other noneducation programs, the American Recovery and Reinvestment Act would provide an unprecedented $13.6 billion nationally for IDEA. Of that amount, California would receive more than 10%—or $1.36 billion!

Both the House and Senate are slated to vote on the proposal in the coming days. Your voice needs to be heard! In addition to alerting superintendents and board members in your SELPA, we urge you to do two things:

Call your local legislator and ask him/her to call his/her Congressional Representative and urge support for this funding.
Call and write your local Congressional member and ask him/her to vote for this funding.

This is a ROUGH estimates on what the school districts in your SELPA would receive if the funding is approved.

Share this information with parents in your community and coordinate telephone trees to contact members of Congress to urge support of increased funding for special education.

Time for a chat, Mr. Obama!

2009-01-23T09:15:00.000-08:00

WOW! We finally have someone in the White House who is doing more than paying lip service to IDEA and special education; President Obama's White House is actively seeking communication from us. This is a very exciting change from the last several administrations. So go to Policy Pitch and find out 10 ways to reach Mr. Obama-- go on, you know what to do. Disperse people, there is nothing to see here! Go about your business.

Thanks Mark for this great post today! (You can read Mark's blog by clicking this link.)

The law is the law

2009-01-21T10:42:00.000-08:00

The beauty of the rule of law is that it is here to remind us what to do when we really would like to forget. Like when you are driving down the highway and some lunatic cuts you off and nearly causes a wreck and you might want to retaliate, but you think about your insurance rates, and the moving violations.

Well, the current budget crisis is a wreck. And fortunately we have a few laws in place to remind us how to behave. When things are good, it is not so hard. I never feel road rage when there is no traffic, only when I am hemmed in. That is self interest at work. Laws are more important when the right thing is not the convenient thing. Even in good times, districts needed a law to remind them that special education students had a right to play on the playgrounds, and a right to be in school with appropriate supports. Now in bad times, they need a big reminder.

The law is the law. IDEA is a very strong law, written as a remedy during a time when students with disabilities were legally excluded from schools. It is a good law that reminds us to do the right thing, and it needs to be reinforced. The difficulty of the law is that sometimes things must go badly awry before a remedy can occur... one cannot press assault charges until the assault has already occurred.

Hopefully no students will be hurt as boards of educations are doing the impossible task of balancing budgets in the current crisis.

After all, the law is the law, whether you use it for hindsight or for foresight.

Presidents Helping Children

2009-01-20T07:24:00.000-08:00

I'm off to watch the inauguration of Barack Obama as so many people are this morning. Presidents have had a role in the civil rights movement since it began with the writing of the constitution-- our first proslavery document. Historically, presidents affect children's lives in many areas: health, nutrition, schooling, housing, childcare and safety.

Children did not fare well over the last eight years; more are in poverty, more are without health insurance, NAEP scores have gone down and the list of laments goes on. There is much to be done, and this administration is poised to make a positive difference for our nation's youth. We have so many needs and hopes right now, but one of mine is still to fund IDEA this year. No stimulus package is complete without it.

Happy Birthday Dr. King

2009-01-19T08:41:00.000-08:00

The history of the United States of America could be told as the history of a nation that struggled toward the vision enshrined in its Declaration of Independence and Bill of Rights. Slowly and inexorably, this nation has extended these rights to life, liberty to all it's citizens whether cream colored, brown or black, whether male or female, under 21 or 18 or over, whether ambulatory, seeing, disabled or not... eventually we even envision these right extended to all the world's people in our great movement to spread democracy.

But this inclusive vision was not always so. And is under constant threat both overt and subtle. In the beginning, we are often told, only white males over 21 who owned property could vote. In some colonies, they also had to belong to the state church (told less frequently).

When the states and the new federal government could not resolve certain differences (like who should be allowed to vote) the argument was settled by reserving these rights to the states. Thus, states were allowed to set the criteria for voting rights, and by extension all others, like property rights, rights to attend school.

Thus was born the civil rights movement, for what could be more in conflict than the freedoms envisioned in the Declaration and the Bill of Rights and a state prohibition to attend school because a student is female, or has a darker complexion than his peers, or cannot walk?

Most people do not realize that the history of disability rights goes back as far as the history of civil rights for women and African Americans. In fact, the years that Dr. King and Malcolm X were working for the full rights of African Americans, people with disabilities were doing some of the same work. And these years were preceded by centuries of work to slowly extend the freedoms we all cherish to people of every color, every creed, every ability, every gender (well, at least two genders and more in places)... to every one.

Yet this is where the rubber meets the road, where the admonition sometimes attributed to Jefferson, "the price of liberty is eternal vigilance," becomes real. For intentions are not enough.

IDEA needs to be fully funded to be real. Without funding it is de jure, and not de facto law. It cannot be real. We must hold our newest president, and ourselves, to his promise to fund IDEA and bring more of our citizens into full protection under the law, and full citizenship. For more on the history of disability rights, see:

www.sfsu.edu/~hrdpu/chron.htm

if the army had to hold a bakesale

2009-01-15T21:38:00.000-08:00

I was thinking of a protest slogan from the Vietnam War era, "Wouldn't it be great if our schools had all the money they needed and the military had to hold a bakesale to buy a bomber?" when I attended the school board meeting this week.

Special Education parents had rallied to discuss the many items on the list of budget reductions that included firing nurses, occupational therapists, speech therapists, classroom aides, and others.

The JROTC program was also on the reductions list-- to reduce the army officer teachers to two, and combine the 100 students into two classes. (That may sound like a lot of students per teacher, but most high school teachers-- math, English, science, history etc-- see over 120 students daily.) The JROTC staff had really helped the students to organize and prepare for the meeting, bringing in community members, family and students to speak very passionately in favor of the program. They had speakers address the board for nearly an hour.

Somehow in all of this, the special education parents who came to speak were shuffled to the end of the meeting and their time was cut from three minutes each to one minute each. It seemed like an accidental oversight or mistake, but it really felt that we, that our children, mattered less. It did not help that Mr. Eberhardt, the board president, told every special ed speaker to "wrap it up."

One of the JROTC staff said, "We are not here to recruit your children... this is a leadership program. We could have used the McDonald's model. But we used the Army model." Yes, but if the program did use the McDonald's model, the Army wouldn't pay for it. Why? Uh, well, it is a recruitment program.

Why is this a special education topic?

The Army funds the JROTC at 50%. The federal government does not fund IDEA (the Individuals with Disabilities in Special Education Act) to even the mandated 40% level that Congress wrote into the law.

For this posting I am putting aside all of my rants about the Army reducing its own IQ standard to increase recruiting for the current wars, the ACLUs public position that U.S. military recruiting practices among minors violates international laws, and my convictions that Kurt Hahn and James Williams were right, there is a moral equivalent to war; all my reasons for thinking the military does not belong in schools at all.

For this post, my question is: given the sheer size of the military budget, and the drastic state of educational funding, should the army kick in the other fifty percent for JROTC? Why is our district paying for a military recruitment program at all? If the program is that valuable to to the army, then let them fund it.

Or at least they could help the special education department hold a bake sale. They do a lot of community service, and what a great photo op for the army's new humanitarian image to have those handsome, uniformed cadets helping my daughter in her wheelchair as she tries to sell cupcakes outside the district office!

I've noticed the army still has not had to hold their own bakesale.

Is there a moral equivalent to war? It just might be funding IDEA, maybe even 50%.

California's deep cuts to SpED

2009-01-14T08:40:00.000-08:00

The governor that recalled a governor because the budget in California was not balanced cannot balance the budget. Things have become incredibly chaotic under the Governator than they ever were under Pete Wilson.

Just last week, school districts, which compose their budgets for the 08-09 school year in June (six months ago), were told that they had to make additional cuts for this year. That means they have to figure out how to unspend money already spent. This after making deep cuts for the current year last spring. (Confused? That is because the whole process does not make sense-- does your paycheck get revised after it is in the bank?)

Who is in charge up there? Why are Californians not storming the capitol?

What this means in the real world, not the land of magical thinking that Schwatzenager seems to occupy, is that classes are being combined mid-year, assistants, nurses, speech therapists are being fired mid-year and schools that somehow managed to hang onto music and athletics are losing them mid-year. One child said to the board: It seems like we just got music back, and now you are taking it away again!

Last night, our board had to figure out how to make an additional 16 million dollars worth of cuts. Line by line, they went through the budget. News flash! Education is not a huge wasteful enterprise, not some pork barrel project. It is actually a pretty lean, efficient system. Well, lean. It would be more efficient with more money, actually. So, line by line, the community looked for the corporate jet and the martini lunches, the tax sheltered golf games, the trips to conferences at exotic resorts. They just are not there. The corporate holiday party for teachers at my child's school was a box of fudge and a thank you card brought by parents and a pot luck lunch brought by teachers.

So what they cut is jobs.

And how is laying off all of these people-- groundskeepers, custodians, carpenters, music teachers, coaches, occupational therapists, speech therapists, nurses, teachers' aides-- how exactly does that help our state economy? Now we have more people needing unemployment, in danger of losing their homes... how does that help?

The mantra of the right that we have a spending problem is just getting to threadbare. The whole party wants to patch the holes in their seats. They don't seem to realize they are wearing the emperor's clothes and there is nothing to patch.

As a California home owner (there are still some left) our family pays less in property taxes than the state pays per year to educate two typically developing children. We have three kids, one with special needs. Those taxes need to also cover water systems, fire services, hiway patrol, 911. In short, we make a profit on our taxes and our state government.

We do NOT have a spending problem. We have a revenue problem. MORE NEW TAXES!

Congratulations to the right-- you have finally managed to cripple the finest public education system ever built. The only system ever attempt to educate all it's citizens regardless of race, class, religious affiliation, gender or disability; to attempt to educate all citizens equally; to invest in social mobility and cultivate talent from every sector of society is now on it's knees, thanks to your strangle hold on funds and your anti-education agenda. Your loathing for this great equalizer has finally born fruit. The schools that can actually educate function only because they are supported by wealthy PTAs and private foundations, while the schools attended by poor and working class families are falling apart. Parents of typically developing children are calling for cuts to special education. One parent described what is happening to our district as "death by a thousand cuts."

I suppose next spring you'll be complaining about test scores and blaming children, parents and teachers for those too. I blame you. I know how hard those teachers work, and how much time we spend on homework and at board meetings. Now you, the legislature, need to do your part. We need more teachers, smaller classes, more supplies and enough money to heat the buildings. Oh-- that stuff is not free.

Shame, shame, shame on us for letting the legislature get away with this. Let's take the week off, hop on those district funded jets, go up to the capitol and demand a rescue package for our school system. And afterwards, we can go out for cocktails and plan our next golf vacation...

For more on this issue, see the article in the SF Chronicle:

http://sfgate.com/cgi?file=/c/a/2009/01/14/MNS4159KA4.DTL

Sarah Palin, Where are you?

2009-01-12T21:44:00.000-08:00

Hi Sarah,

I hope things are going well with Trig's Early Intervention. How is Trig? Is he sitting up? How is the feeding going? How is occupational therapy? Physical therapy? What are you learning about special needs children?

Have you looked into special education in Wasilla yet, or will you keep Trig in anchorage? Our small town could not provide for our daughter, so we moved. It is a hard decision, but we do what we need to do for them, right?

I am wondering, as one working mom to another, how you and your partner juggle the schedule. We found a great parent participation early intervention program, but it was 20 hours a week-- more with home therapies. I ended up taking a year of family leave. Thank the voters for family medical leave, huh?

So, where have you been? After all that talk about funding IDEA and early intervention, I figured you would be out there with us this year.

Maybe in a couple years. I don't think I had a moment to rest until my daughter was in second grade. Maybe we'll hear from you again about special ed once you catch your breath. I just keep hoping there is a larger purpose to you having this baby, besides of course the baby, which might be purpose enough. But we sure could use your voice, if you get a chance.

IDEA needs you. Trig needs IDEA. Hang in there.

IDEA- fund special ed!

2009-01-10T14:04:00.000-08:00

The Right says we have a spending problem. I agree.

The problem is that the federal government is NOT spending it's legal share of funds on the IDEA (Individuals with Disabilities in Education Act).

IDEA is the law that requires schools to provide a free and appropriate education to students with disabilities. Appropriate, in lay terms, means a kid not only gets to go to school, but they get to go and learn.

Why do we have this law? In 1970, according to the IDEA website, only one in five children with disabilities were in school. Many states had laws barring children with disabilities from attending public schools, including children who were deaf, blind, emotionally disturbed and mentally retarded. It was simply expensive and states did not want to do it.

They still don't. California has been shirking it's duty for years by funding the Cost of Living Adjustment for regular education teachers but not special education teachers. California does this because the federal government does not fully fund IDEA, and California does not want to make up the funding difference.

That is why local districts pay so much for special education. IDEA requires every state to provide a free education to every child, even children with disabilities.

The feds knew in passing IDEA that they would be adding enormous expenses to schooling. At the time, it was as radical a step as Brown V. Board of Education, desegregating schools, and a lot more expensive. It meant that kids in diapers, kids in wheel chairs, kids with feeding tubes, kids on ventilators, kids with diabetes, kids who needed computers, kids with all kinds of expensive, hard to figure out needs would be in school and have a legal right to the help and support they needed. And the hope was that they would do better, live better, even learn, that some would become more independent, cost less later and even make society better. Some would just do better, and that would be better too.

Taking care of children with special needs is not only morally right, and preferable to most people than euthanasia and abortion, it is pragmatic. Children like mine, who cannot speak, may learn to use a computer. Sure, assistive technology is expensive. My kid's computer (a My Tobii) cost $15,000! But, she will never play sports, never sing in the choir, never play an instrument, never take driver's education, never hold a pencil or a paint brush, never go to the prom. (Maybe the prom, maybe!) But the computer!? On her computer my second grader is doing math, and reading, and writing for the first time! We don't know yet how much she can do, but no one knew she could read, or add, or even think. She might be able to earn a living or some of her living, someday. That means the money we invest in special education now means that our typical kids might not have to pay so much for so long to keep kids like my daughter once we are dead. And even if she doesn't to leave a whole human being who can read and think trapped in her body for forty years?

Well, you decide. What would you do? What will you do? We have to decide what kind of society we want to build. Will we fund IDEA or not? If we won't fund it, we should just be honest and go back to the way it was.

The alternative to IDEA is history: institutions, boarding schools, orphanages and doctors who used to tell parents to give up this child, forget you had her. Personally, I am proud of this vision. I can't go so far as to say my daughter's disability is a gift from a higher power to her or me, but I agree with right, she is sacred. And the left, she should have rights. Maybe one day, we will be worthy of the vision of IDEA.

We have a spending problem. Let's fix it. Fund IDEA now. Special Education families could use the help of all families on this. Pass it on: we all have everything to gain. Pass it on: without your help to fix the funding problem, IDEA is really no IDEA at all.

What will happen then?

2009-01-09T18:05:00.000-08:00

I work every day for my girl.

I joined the Community Advisory Committee on Special Education in our district.

Twice I have been to the state capitol.

I meet with my legislator.

I attend board meetings.

I retained an attorney when our district refused to assess her need for a speech device.

I applied for Medicare three times before she got it.

Last month, a board of education member told me personally that the board was not going to cut special education. This month, huge cuts to special education are on the agenda. Our superintendent said the decision was basically already made.

Either Gary Eberhart is a liar, or he is sadly uninformed as the board president. I actually think he is both intelligent and informed. Perhaps there is some other explanation. I hope so.

What scares me most is that these people who I work with every day, who have so little interest in my child and so much interest in their budget, will be the ones who "care" for her when I am gone.

I hate to say that the worst thing I learned about her diagnosis is that she will most likely out live me.

If most of the energy of most agencies now goes into finding reasons not to care for her, why should I think that will change after I die?

The true measure of a person is what they will do when they believe no one is looking. Based on what they do when people are obviously looking, I am scared for my girl.

Fighting over scraps

2009-01-08T12:45:00.000-08:00

Our local school board, as many will be, is considering deep cuts to special education. Parents of regular educations students are chaffing at the rights protected by law that disabled children have. They do not realize that these rights are protected because forty years ago, a child like mine would not be allowed in school at all.

This is a copy of the open letter I wrote to our board.

Special education is expensive, as you and caregivers of children with special needs know. However, it is lean, not wasteful. It is expensive locally because special education has already taken a forty percent cut from the federal government. It is not special education that encroaches on the general fund, it is the federal government that encroaches on education as a whole. Please do not continue to refer to our children or their programs as "encroachments". This blames them for a problem that they did not create and over which they have no control. It is inflammatory and insulting language that disguises the true problem.

I would ask you to be careful as you lead this community. When resources are scarce, and leadership is willing to play on people's weaknesses and fears, people will protect their own at the expense of others. Very few people rescued disabled people during the holocaust. Even in our own New Orleans, gravely ill and disabled people in hospital were euthanized before they were rescued. Every one is pro-life and pro-child in public, but the terrible truth is that most people wish my child were not here. The easier and more polite way to say this is to demand that she get less money, fewer services and be less of an "encroachment" on more able bodied, promising children. I know that it is easier to say this than to admit that few care if she lives or dies.

If I had any wish, it would be that she were whole and healthy. I wish for a cure for Rett Syndrome. But there is none now, and we play the hand we are dealt. So instead, I wish for speech generating devices, a nurse who is on campus when she does have a seizure, a teacher who can inspire her to learn, and do her best, even in her daily pain. I wish for friends on campus who know her name, and invite her to play. For the simple joy of being a child in a community that embraces her and does not blame her for the burden that her disability is.

Thank you for making some of our smaller wishes for her come true. As small as they are, they may be the only ones she ever gets. That our community sacrifices for her and others like her is to our honor; society is judged by how it cares for its weakest and most vulnerable members.

I hope that you care-- and that you choose wisely. We are not yet on a rooftop in New Orleans. The levies have not yet broken. I do not have to choose between my children, or between yours and mine.

Warmest Regards,

Gina Hale, mother to Emma, age 8

Autism and epilepsy

2009-01-07T08:38:00.000-08:00

According to National Institutes for health, nearly one third of people with autism have epilepsy. This is the case with my daughter, and some of her friends as well.

Epilepsy is a poorly understood phenomenon among the general public, and for many people, witnessing seizures is frightening. We have had enormous difficulty finding day care for our child because most sitters and agencies are fearful-- not unprepared-- to handle a child with epilepsy.

The current policy in California's education code, which requires a licensed nurse to administer Diastat during a seizure and prohibits non-licensed persons (including first responders) from giving it, increases the stigma around epilepsy and creates legal barriers to community activities (like field trips) and settings (like recreation programs) for children with epilepsy.

Diastat is valium suspended in a gel and administered rectally (uh, blush, blush, in the bottom). Nurses apparently do not object to Ativan delivered sublingually (given under the tongue)-- same drug, different route. Ativan given under the tongue during a seizure increases the chances of choking, aspiration and secondary pneumonia. It simply is not safe. Our doctor reacted by saying "are they trying to KILL her?" when we explained the situation to him. Diastat is the most effective, safest emergency medication. It just has to be delivered through the rectum and that is, well, embarrassing, perhaps. The nursing position statement is quite clear that student privacy is an important issue to nurses.

Personally I don't care how many people see my kid's bottom if it means she won't choke to death. Maybe I am just insensitive.

Parents have confided in me that they do not tell providers that their child has epilepsy until the last possible moment (walking out the door) because they would never be able to hire anyone. Parents also have chosen to use less safe emergency medication (Ativan) in place of Diastat, in order to get around the nursing requirement in the Ed Code.

This policy is also looked to by Regional Centers and daycare centers. It means that children with epilepsy are often barred from participation in community settings unless they are attended by a nurse-- an unnecessary financial burden and barrier.

Please join us in contacting you local school boards and legislators to have this policy changed.

2009-01-05T07:14:00.000-08:00

Is your child non-verbal or does he or she have delayed speech? Does he or she use sign language, PECS, gestures, proximity or word approximations? Anyone with a language delay or disability is a potential Augmentative and Assistive Communication (AAC) user.

http://jset.unlv.edu/15.1parette/first.html

Students have a right to Assistive Technology under the Individuals with Disabilities in Education Act. This includes Augmentative and Assistive Communication (AAC). Federal law also mandates family involvement in the decision making process. The article above very clearly describes these rights and how families might be involved.

How do you know if someone is a potential AAC user? Anyone with a disability that impacts their expressive language is an AAC user. Some people are afraid that using AAC will discourage children from developing oral language. AAC actually helps children develop and use langauge, and often success with AAC increases children's interest in and ability to communicate. The link below provides excellent resources about AAC for young children.

http://aac.unl.edu/yaack/b1/html

For most students with a language delay or disability, AAC can provide access to curriculum. Without these supports, some children simply cannot receive the free and appropriate education they are entitled to.

DIASTAT saves lives, nurses rebel

2009-01-03T09:58:00.000-08:00

My daughter has epilepsy. She rarely has seizures, but this fall she had a couple months of serious episodes following routine oral surgery. This was our first encounter with the power of the school nurses union. To paraphrase the suffragist song from Mary Poppins, "though we adore nurses individually, we agree that as a group they're rather stupid."

My daughter was prescribed Diastat by her neurologist to give in the case of "prolonged" seizures. Diastat is designed to be given by first responders and lay persons. "It can be administered by day care personnel, babysitters and caregivers," says the note from her physician.

Apparently, the California School Nurses Association (CSNA) disagrees. Their public position is that Diastat should only be administered by licensed personnel. Initially, the union was satisfied to have this position be advisory. However the CSNA managed recently to have it written into the Education Code that only nurses may administer this emergency medication in public schools. It is now illegal for classroom staff to give this life saving medication-- even if the nurse is for some reason, unavailable. Not even in an emergency.

Which is exactly what happened this fall. My daughter had a seizure at school. Her classroom staff called after five minutes in a panic-- the nurse was not there. They were not allowed to give the Diastat and my daughter was turning blue.

Before five minutes, 80% of seizures will stop on their own, but a seizure lasting five minutes has an 80% chance of going status. Status Epilepticus can lead to hypoxia, heart arhythmia, brain damage and even death. Diastat is designed to prevent seizures that last five minutes from progressing to status. It is like pouring water on a fire. It can prevent a major medical emergency from developing.

My daughter was experiencing a major medical emergency and the nurse was at lunch.

I pulled up as the fire truck arrived. My daughter was unresponsive, breathing and blue. It had been a total of 18 minutes from the first call. She could have had the medication at five minutes, if the school had followed the prescription from the doctor. By law, they cannot. The CSNA feels it has the authority to over ride orders from a physician. Not only is this over reaching their medical authority as nurses, it is bad policy.

This policy, in it's logical end, means that:

In a school with a single student with epilepsy who is prescribed this medication, Districts must:

hire a nurse for the entire school day, every day at huge cost not included in the state education budget
provide relief nurse for lunch and break,
hire a nurse for field trips,
and stand by and do nothing when emergency medication is available and the nurse is not, potentially putting students at grave risk.

This policy is scandalously self-protective.

Several nurses that I have spoken with individually oppose the policy, saying it places students at unnecessary risk. They claim the policy came about because of CNSAs fears of liability for nurses who train staff to administer the medication.

That is a test case waiting to happen. Let's see-- you, the nurses union, were afraid you would be sued if someone made a mistake giving life saving medication to my child. So instead, my child dies or is injured when medication is withheld.

I hope no one has to test this law. Instead, I hope families of students with epilepsy will join us in contacting their local legislators in an attempt to change the education code.

New Year, Old Grief

2008-12-31T09:08:00.000-08:00

This will be more of a personal posting than most of the previous. I guess it is the new year that puts me in a reflective mood.

One of the things about living with deep love for someone with a progressive illness is that the grief ebbs and flows-- like the tide. This year for me grief was a spring tide at full moon. It breached my seawall and flooded my reserves.

The low point was a trip to the emergency room by ambulance-- the 10 in a month-- for seizures that would not stop. I watched the nurse team thread the IV, and laid my head on her bed, holding her hand and singing to her. She stopped seizing and slipped into the deep sleep of her post-ictal state before they got her meds on board. When the doctor came in, she said, "I don't know why you keep bringing her in, there is nothing we can do. " That was the high water mark.

But the ebb always has followed. Four months later, she has been seizure free for three months. (There really are some things they can do for her.) But not well, yet. Maybe never.

I recognize the state I have been in for six and a half of her eight years. It is the same state I was in for the two years my father was dying of cancer. The heightened alert state that comes with dealing with a health crisis. The almost crushing desire to make every moment count. Of knowing the last moment is near. Except that now I must learn to sustain this for a lifetime, twenty, thirty, forty more years. If I live that long.

Sometimes, like now, the urgency ebbs. As she goes through a spell of being relatively well. Then I have time for other emotions. I want to run after the tide, chase it to the low tide mark and throw sticks at it, rage at it for ruining my sand castle dreams, the imagined life of parenthood.

I took her two sisters to the mountains to play in the snow this weekend, and we had so much fun! We played until we were exhausted and cold, then drank hot chocolate from our thermos as it began to snow. It was a slice of heaven. And all day, I missed my other girl. All day I was racked with guilt. She was home with my partner, watching movies and hanging out... her favorite. We know she hates the snow. Her poor circulation puts her at risk of frost bite. Of course she cannot come. Of course she is happier at home with dad. Of course I am lucky to have a partner who will be that dad to her. But I missed her. I missed what might have been. I missed seeing her joy in our shared experience.

I want her to be well, to be whole. I want joy for her-- for her world to be bigger. She who has had so little, and deserves so much. I long for a cure. I long for a cure.

And in the meantime, I long for acceptance. And strength. And a better seawall. That aphorism that god only gives us what we can handle is a bunch of hooey. We handle what we are given if we can. I hope to handle what I am given with a bit of grace and a lot of love. The love is easy. The grace? Not so much.

Total Quality Management in Special Education?

2008-12-30T12:18:00.000-08:00

http://sweb.uky.edu/~jszabaO/QIAT.html

This is a link to the Quality Indicators for Assistive Technology home page. This consortium, out of the University of Kentucky, has created these indicators as a tool for evaluating program effectiveness.

I am not a big fan of the movement to view education as a business (for many reasons not relevant to this post) but one area that I think education systems could learn from is Total Quality Managment.

After a three year saga with our district to get an Augmentative and Assisitive Communication assessment and speech generating device for my daughter, our district has agreed to complete a program quality review in this area. We are using the QIAT indicators. I am interested to see how the process goes, and eager to post some of the lessons learned along the way.

My initial impression? This is a completely new process for the district. They really have very little, if any experience with collecting data about performance and using that information to improve their programs.

That might explain a few things.

I am excited that they have embarked on this project and are including parents and many community stake holders. Quality management is a challenge for businesses with plenty of experience-- for the district to take it on voluntarily is remarkable. I hope that this initial model becomes a process for improving quality that the district can use-- eventually-- in other program areas.

California's Toxic Soup

2008-12-29T09:48:00.001-08:00

http://www-bcf.usc.edu/idjlaw/PDF/14-2/14-2%20Daub.pdf

For those who like to read such things, this link is to a environmental law brief on California's attempt to regulate toxins.

I have come to accept that my kids are swimming in toxic soup. I thought about moving to Alaska and living in a yurt, like some friends of mine, but I learned that among indigenous people there, the levels of some neuro-toxins in breast milk is almost as high as my own. There is no where to go. I will have to cast down my bucket right where I am. And hope the water is potable.

After over two weeks at home with three kids under 10, the house was a mess this week. I woke up yesterday determined to tackle it. Seeing me mop the kids begged to be allowed to spray, wipe, wash and otherwise play in the water and suds. Being eager for any productive distraction, I took off my gloves and began sorting through our various cleaning products, looking for something mild and non-toxic.

After sorting through every thing we had, I finally settled on dish soap-- without anti-bacterial agents. I'm not sure if it is safe, but it is probably safer than the GreenWorks stuff I used myself.

Even before my first daughter became symptomatic with a neuro-developmental disorder, I usually bought the greenest product I can find. But the recent discussion about chemical replacements in plastic toys has heightened my sense of alarm. Scientists don't know what is in stuff on the market. In fact, they cannot find out, because by law, manufacturers are allowed to keep this information as trade secrets. And no one has tested most of these things for health effects, and won't until after people begin to become ill or disabled.

Last year, a researcher from the MIND institute at UC Davis was giving a lecture on the current research about the search for environmental causes of autism. He spoke of the complexity figuring out what is actually out there in the water, the air, our kid's pajamas, food, pillows, toys, soap... and then trying to figure out effects at different stages of development, and interactions between chemicals. Someone asked the inevitable questions about mercury. He said that he was actually more concerned about BFRs (flame retardents) in pajamas, clothing and furniture.

Pajamas? What could be safer than the matching cuddly, soft, footie jamas I just got them for Christmas???

California is attempting to regulate toxins in a new way, similar to the approach that the European Union has taken. In the absence of any reasonable effort by the federal EPA, this state is attempting legislation that would require manufacturers to prove their product is safe before it goes to market. Currently, manufacturers push chemicals to market with little or no testing, and if a chemical is proven to be dangerous (often through lengthy litigation) it is after somebody, or many bodies, have been harmed, some times irreparably. The testing happens after products to to market, and we are the test subjects.

This legislation might actually prevent the uninformed experimentation on human and animal subjects that is being pursued nationwide under the current policy. How novel.

Maybe someday I will know whether I can drink the water in my bucket, or give it to my children.

Family seeks a great nation

2008-12-24T09:31:00.000-08:00

http://specialneeds08.blogspot.com/

I wanted to encourage folks to check out Mark's blog. It is really cool. He has spent some time working on policy issues (check out his profile and myspace page!) I read his article about military families having difficulty getting health care for children with autism and felt connected to military families in a new way-- we have a shared struggle when it comes to our kids.

A few things are clear to me as I struggle to find resources and services for my daughter. We are all in this together, in a terribly isolated way. We have a shared struggle but not yet enough organization.

First, every agency and health corporation has a stake in denying services to her. They know if they deny, they protect their budget, and "someone" will cover her needs-- or more likely the family will give up. For example, in trying to get a speech generating device for our daughter, we orginally went to the school. They denied, so we went to Regional Center (in our state, they are funder of "last resort".) Regional Center told us to appeal the the school, school tells us to appeal to Regional Center. For three years we got stuck in this loop.

Second, for profit health insurance companies make money by denying services. A percentage of our premiums go to shareholder payouts-- money that could be spent on health care in a non-profit or single payer system. It is wasteful and inefficient if the purpose of health care is actually to provide care. A single payer system may not be perfect, but at least we would not have the conscience crisis of knowing that kids were denied health care so that share holders could get their cut.

I know I am stumbling into a partisan issue here. But I want to raise this issue. Strict constitutionalists are against interpreting the general welfare clause to mean, well, welfare. Consider this though. The maternal mortality rate in the 18th century was about 25% -- read that as one in four women died giving birth. And the infant morality rate was even higher. My grandmother a century later had thirteen babies. Eight survived to adulthood and of those, six died of influenza during the Spanish American War. Adults typically died in their forties, often with "their boots on" from illness, accident, warfare and, yes, age. Senility was rare. Most of the diseases we think of as age related (Alzheimer's, Parkinson's, cancer) were unknown. Who lived long enough?

We are so far removed from the experience that we simply cannot imagine it.

We today are heartbroken (understandably) if one of our children dies. Parents sue obstetricians frequently if a child is born with CP or another disability that might be attributed to a birth injury. My father died at 60-- before he retired-- and we were shocked. He was so young. He should have had many good years left...

And it is hard to imagine that Jefferson, who lost his wife to childbirth, could imagine our world, where perinatology and neonatology have advanced to the point that premature babies of 28, 27 even 26 weeks sometimes survive. That they survive at all, and thrive, even with complications and disabilities like visual and hearing impairments, respiratory ailments, intellectual disabilities, is an artifact of medical science and social change. Or that someone with a spinal cord injury could live... for twenty, thirty or even forty years.

The founders could not imagine this. And it is hard to know how they would have approached the social issues that these advance raise. At a time when the solution to an economic downturn was to follow the calvary west and claim newly depopulated lands, shoot a quadriped and put up the meat and wild vegetables for winter, when people like my daughter would have died young due to bedsores, seizures, starvation... it is hard to know what they would have seen as solutions to our current dilemmas.

How would they have resolved the sanctity of life versus the spirit of independence and individualism that we attribute to them? We have a few clues. One clue is that when social issues were too hard to resolve, they left them to the states and future generations to solve. Like slavery. And women's voting rights. And the states and private charities took some of these issues on. And created great institutions like orphanages and insane "assylums." I guess they really did not want to deal with it either.

I think we will have to think for ourselves. Be the grown ups in our own time. I am fully in favor of drawing on the wisdom of our ancestors-- but also recognize their short comings. How can we use the checks and balances, the evolved powers of the administrative and legislative branches of government to solve the deeply challenging problem of caring for the vast numbers of children and adults with disabilities? How can we do better than they did?

One thing I am sure of-- one of our great adaptations as a species is our ability to cooperate, form social networks, divide labor and work together to build societies. Animals solve some of these problems by eating their young and banishing adults. Humans build hospitals and fund Medicare.

Now we need to think carefully and talk together-- as if we really wanted to hear each other-- about what kind of society we can make.

Because my family can't move any further west in search of game and a place to live. We are already in rough seas, nearly over our heads. And we need a social network worthy of our daughter.

Free books online

2008-12-24T08:51:00.000-08:00

Fantastic resource with books published and downloadable online. Books on mental retardation, autism, educational policy, accessing SSI. Many new or current resources. Check it out.

http://www.disabilitybooksonline.com/

2008-12-23T09:48:00.000-08:00

I've been looking for resources for students in secondary educaiton, in transition, on their way to college and in college. I found this resource this morning and the database of free accessible technology is a real resource. Definitely worth checking out.

http://adaptech.dawsoncollege.qc.ca/index.php

2008-12-22T09:17:00.000-08:00

I found this site this morning as I was trolling the net. I highly recommend it. Great resources and a wide perspective of news and events related to special education. Resources as well, and even the ads are relevant.

http://www.specialednews.com/

Pre-Natal Testing

2008-12-21T11:07:00.001-08:00

I just finished reading "New Era, New Worry" (Carmichael, Mary. Newsweek, December 15, 2008). The article explains the positions of the Allards, who have a son with Down's syndrome. They support more Down's Syndrome babies being born.

Prenatal testing has become a disability rights issue, because as Newsweek put it, non-invasive genetic testing could "result in more diagnoses, more abortions, a dwindling Down population and a drop in support for families who carry to term.

The Allards have had a good experience raising a child with a disability, and they want more people to know that it is possible to raise a happy, healthy child with a disability and maintain a strong marriage and family. The concern is that people with Down's syndrome will have a shrinking community and less support.

That would be like having a child with a rare disability.

Our daughter has a rare genetic mutation that affects about one in 10,000 live female births. It is nearly universally fatal in males. Still, we do enjoy a wider community and network than friends of ours who know of exactly 17 children in the world with their son's disability.

When we learned that our daughter had a disability, after watching her develop normally for 18 months, her baby sister was three months old, not yet weaned, and I was just allowed off bed rest after complications from a C-Section.

All hell (no, really not heck, it was living through Hell) broke loose. Our first child went from a happy contented baby to a screaming, sickly child with degestive problems, self-abusive behaviors, and screaming, screaming, screaming, sometimes 10 hours a day.

"Babies just don't cry ten hours a day, I know it must feel like it sometimes, but that just is not possible," said my family doctor, whom I still love to this day. She simply could not conceive of what we were living through. No one did for two years, until I found out about her syndrome online.

Ten hours not possible? I was the one who walked her around the block from mid-night to 5:34 AM (sunrise) in the sling so that my partner and our newborn could get some rest. He took a sick day and did the same thing, pacing the living room floor with her in the colic hold, putting her down to scream while he fed the baby, pacing pacing pacing so I could sleep.

We decided not to have any more children.

Then we learned that she had a genetic mutation that can be screened prenatally. After long midnight talks and much soul searching, we decided to try again, with the understanding that we would terminate a pregnancy if the developing fetus had any genetic diseases that we could screen for.

We are pretty lucky, we have a strong family, we still love each other, we both have good jobs and health insurance, three great kids, and a wide community of friends that we have made as parents of a special needs child. But it is not the life I choose. We make it work, and we embrace our child, and we fight for her. But I would never wish this life on anyone, least of all another child like her.

Every family, every mother, every child, every disability, is different. Even disabilities that are the same are different individually. I know a child with Down's with a (rare) complication-- a spinal malformation that left him a quadrapalegic on a ventilator. And I know children with my child's disability who, unlike her, never walked, never ate, have feeding tubes and intractable seizures.

We have been relatively lucky, at least as far as bad luck goes. But that is the thing about genetics. You NEVER know. It might be the good kind of down's syndrome, or it might be pretty severe. Yes, we still know a lot about supporting people with Down's and by and large have changed the natural history of the syndrome dramatically for the better.

But being a parent of a special needs child is no picnic. In fact there are fewer picnics, merry-go-rounds, and play dates for many of us. And a lot more medical appointments.

This has to be an individual decision. I support everyone who has a child with a disability, whether they chose that or not. I know how hard it is.

And I support women who choose to terminate a pregnancy when they learn of a genetic mutation that is disabling. Only they can know they factors that impact their decision. And they can only make the decision with complete information-- unbiased, complete information. That includes the full prognosis for better and worse.

For me it was painful, but simple. I would not subject another child to this, not even to create a community of support for mine.

But Down's is not like her syndrome. And I hope that the Sarah Palin's of the world will rise up and join the rest of us who have been struggling to fund and expand IDEA for years. For her son, and for my daughter, and the rest of the huge community of families that love a child with a disability.

IEP Goals. Audience, purposes and form

2008-12-19T08:42:00.000-08:00

Much of what I have learned about writing IEPs is in response to problems created by not know how to go about this task. Writing IEP goals is a writing task, and it can be guided by the same kinds of questions writers ask:

who is the audience?
what is the purpose?
what is the best form?

Who is the audience? That question seemed so obvious to me before we had to get ready to go to hearing. The IEP document, obviously, is written for the current IEP team, people who know your child. But it is also written for future IEP teams, who have not met your child yet. Potentially, it is also written for administrators who step in to help if problems arise, state monitors, courts, advocates, doctors and therapists. I used to accept goals that were written just for our team, assuming that everyone shared the knowledge of my child that would make the goals clear. Now I know that they need to be written for people who will never meet my child. That means they need to be clear and complete in a way that someone who has never met your child or understands her diagnosis can understand.

What is the purpose? The IEP is first and foremost a legal contract between the school and your child. It is binding, and it protects your child's rights to all the services, including the duration and manner delivered, in the IEP. The district is only required to implement services that are documented in the IEP. This means that it needs to be very thorough and error free. Small errors in the duration, frequency or types of services can lead to big problems.

In addition to serving as a legal contract, the IEP serves as an historical record for new teams. It should ideally give a picture of the child's educational history and progress and give the team useful information about next steps to take with the child.

What form should the IEP take? Typically districts will have their own forms for IEPs so this is taken care of for you. However, often the forms do not allow enough room for the purpose. We often attach additional pages for different sections. IEPs often have different organizations from district to district. All IEPs should contain current levels of functioning and goals. The current level of functioning and goals should drive the entire IEP. They should describe not only what the child can do now, but also what issues there are to address in the current IEP and beyond-- and why the team is working on the goals in the IEP.

A sample of our most current communication goals-- the best ones we have to date-- is below. Notice that the goal includes the assistive technology, provides a rationale for the equipment used, includes not just who (teacher, aide etc) but refers to the skill needed, and gives measurable outcomes (how many words, how many turns, and in what context).

_________

Augmentative and Assistive Communication Goals 2008

Overview: Due to severe apraxia associated with her diagnosis, ___ is non-verbal and not expected to regain speech functions. She has limited use of her hands and cannot use sign language, complete picture exchanges or reliably direct select with hand operated switches. ___ uses eye gaze to select icons. According to her most recent AAC report, ___ understands conversational speech according to her age. ____ is a multi-modal communicator, using proxemics, utterances, gestures and aided communication with no and low tech devices and will begin using an eye-gaze supported high tech device 9/08. (See IEP face sheet for equipment list). Her receptive langauge is much higher than her expressive language. She is able to participate in up to six turns of conversation with skilled partners about familiar topics. She has few aided communication opportunities particularly outside of school.

Academic language

Current level of functioning

___ academic vocabulary is limited compared to her conversational vocabulary and her receptive language. ___ needs exposure to rich and engaging academic academic content appropriate to her age and an eye gaze accessible speech generating device will allow her to access all of her vocabulary independently.

Long term goal:

To further develop academic linguistic competence, ___ will develop a core of 100 words using eye gaze accessible aided communication systems, including her high tech device, to express her understanding of core math, science, art and language arts concepts with skilled communication partners.

benchmarks:

___ will use a core vocabulary of 50 words with a skilled communication partner to generate one word responses to prompts about grade level academic concepts, closing at least one circle of communication.

___ will use a core vocabulary of 75 words with a skilled communication partner to generate one to three word responses to prompts about grade level academic concepts closing one to three circles of communication.

Conversational lanaguage.

Assistive Technology- fight for promise

2008-12-18T07:08:00.000-08:00

I thought it might be useful for folks to post the story of our fight for our child's right to speak. A three year legal battle with our school district that almost cost us our home, but finally resolved with her having a device, a qualified support provider and an appropriate placement.

First a little history and some definitions.

Assistive Technology is any tool or device that will help a person with a disability perform a task that is impacted by the disability. Assistive Technology (AT) can be very simple (braille, pencil grips, slant boards) to very complex (standers, motorized wheel chairs, voice activated computers or switches). A sub-specialty in AT is Augmentative and Assistive Communication (AAC). This branch of AT can include:

"no tech" supports (like sign language, visual schedules and cards with Icons and words, some times called PECS- Picture Exchange Communication Systems)
"mid-tech" or "light tech" (single switch battery operated switches that can operate simple machines or communicate with pre-recorded messages) and
"high tech" (dynamic speech generating devices that allow the user to select a wide range of vocabulary and create their own messages).

Since our daughter is aphasiac, we thought AAC was a natural option to explore. Would she be able to communicate with a device? She used everything else we gave her-- sign langauge, PECS, yes and no cards. It was clear she wanted to communicate.

Unfortunately our school district fought us every step of the way. It is helpful to know what arguments do not work, legally. First they claimed she was too cognitively impaired to use AAC.

AAC is appropriate for people with mental retardation (the legal term, not mine) including those with Down's Syndrome, Fragile X and other diagnoses.

Then they claimed that she was not able to use a device because she was unable to access the switches with her hands. In trials, she was not able to demonstrate accuracy.

AAC devices now exist that allow users to use head pointers and eye gaze. Our daughter uses a My Tobii, which works solely on eye gaze. She also was able to use a Vantage by PRC which works by head pointing. (The Tobii is easier).

Since having her device she has gone from answering simple yes and no questions as her main form of communication to writing poems, short journal entries, current events summaries and doing up to 20 math problems at a time. She is doing grade level work for the first time. She can use a screen with up to forty icons at a time and navigate between pages.

To get this done, we had to file a compliance complaint with our state office of education. They found in our favor: our district refused to provide an assessment (the legal time limit under IDEA is 60 days, they waited 2.5 years by the time we filed) refused to hold an IEP about placement, refused to provide equipment listed in the IEP. These are all protected rights under IDEA. Finally they refused to comply with the corrective actions ordered by the state-- a staggering reaction-- and we got an attorney.

It took a second mortgage on our house and a lot of beans and rice and oatmeal, but we prevailed. She has a device, a classroom, a qualified AAC specialist and so do five other students in our district.

Our child was served, but I know of several families in our district who are fighting the same battle.

Today I am posting new resources related to AAC and AT. These make the difference for many students between warehousing and education. It is worth the fight. It is their right.

2008-12-17T16:07:00.000-08:00

I was going to post just once a day but this was far to exciting to pass by. The title is "Drug Trials in Autism."

http://www.technologyreview.com/biomedicine/21748/

Could it be possible that we really are on the brink of a reversal? To hope...

school boards' face the impossible

2008-12-17T13:18:00.000-08:00

I attended our local school board meeting last night to hear the latest in heartbreaking discussions of what to cut from the budget. This has been a resounding theme in our district, and many others for several years. Of course, we live in California, a state which, with the 7th largest economy in the world has the worst budgeting process in the world as far as I can tell. Still with our schools in 47th out of 50th in funding, we are still trying hard to reach 51 (allowing Puerto Rico to pass us).

And our courageous Republican minority is still holding the budget hostage (we have a super majority rule here, so that two thirds of the state legislature has to pass the budget) insisting that they will not, not, not raise taxes. It might, they insist, hurt the economy.

And it is not just the Republican minority in the state legislature. Parcel taxes in our district have failed the last three times we attempted to campaign. People were buying new SUVs and Wii's and wide screen digital TVs and voting down parcel taxes. I guess all that spending was good for the economies of the companies manufacturing these goods-- like Sony, Toyota and GMC. At least American car companies benefitted from all our spending right? And it provided good jobs, with full minimum wage jobs and no benefits or security for retail workers at good retail outlets.

But I am confused.

Our govenor lowered taxes, as promised in his campaign to recall the previous govenor, and the economy does not really seem to have gotten better in the last couple years...

Hmmm. So i want to try and think this through. Cut the budget further and what are the results? More people lose their jobs and can't make their mortgages. More homes go into foreclosure. More banks struggle. There are no jobs right now, so more people need general assistance, medicaid and food stamps, (which are also being cut, in order I guess to stimulate the economy) Shelters and food banks are already overwhelmed so I guess those newly homeless people will just have to live under the bridges, which actually are kind of crowded right now...

so how does all this budget cutting help, exactly? Any one?

We have already had, for years, kids going around the neighborhood, standing in lines at the grocery store and at the transit stations begging for donations or selling candy and gum to support music, art, sports, and yes, inconceivably even science programs for school. Every time I see them, I am ashamed. I am ashamed of my community, my state and my country. We should be taking care of this, not them. Why are our children forced to walk the streets begging for money for their schools? That seems fiscally irresponsible. Or some kind of irresponsible.

I am proud to pay my taxes. I would pay more. The amount of money we pay in property taxes would not even cover tuition for one of my children in private school, much less three. And that tax money is supposed to cover a lot of other things, like 911 services, road building, medical and dental insurance for children...

In the Monty Python lampoon the The Life of Brian, they lampooned the anti-government stance. "What have the Romans ever done for us?" asks one of the revolutionaries of Judea. The others chime in, "Well, aqueducts." The first guy pauses, and says, "Well, besides aqueducts!?" After some arguing back and forth the list comes to include most of civilization: aqueducts, schools, sewers, health care, roads, trade... and so on. And after the long list, the first guy finally says, "Yeah, but besides all that?"

So besides dams and aqueducts, navigable harbors and water ways, vector control, health care for children, the elderly and disabled, k-12 schools community colleges and universities, roads, bridges, street lights, public utilities management, pollution regulation, public safety, fire fighters, ambulances, trauma centers, parks and recreation services, water treatment and sewage, farmers markets, street sweeping... what the heck are we getting for our tax dollars? Yeah, but besides that...

I am proud to pay my taxes and do my bit. I wish to never see another homeless family, another homeless veteran, another mentally ill person soiled and sitting in a doorway, another child with bad teeth or another student begging for money for her school. It would be worth not getting my kids an X-Box for that. Maybe they would even get some exercise and read without one. I wonder what others would give up. And get. If we did.

Fund the schools. Some day this generation of kids will grow up. And I don't think they will forget what we did when it was our turn to be responsible for them.

Reform what?

2008-12-16T18:24:00.000-08:00

With President Elect Obama nominating Mr. Duncan to become the new secretary of education, everyone seems to be talking about reform. I would like to know more about what reforms he thinks are needed, because in education there are reform movements that seek to reform the previous reform movement. Ask any teacher. They will tell you that the trend in education is reform-- always reform. And the pendulum never slows, it simply gathers energy and swings wildly from one side of the pendulum to the other. Duncan has never been a teacher, so as a reformer it may be hard for him to get a sense of how hard this swing is for teachers to manage.

Working as a teacher and teacher educator for many years, I have learned that it takes time for teachers to learn-- not surprising. They are after all, human like the rest of us and need time to practice complex things in varying conditions. I have seen reforms come in under one principal, with enormous amounts of effort and money following, only to be swept away after a year or two by a new administrator, new board, new idea. And the reform that had just begun to flourish is buried under some contrary idea.

What I would say to Mr. Duncan and Mr. Obama is this: be smarter than the previous guys who did this. Don't throw out the baby with the bath water. Look not only at what has not worked, but what is working. Scale up what is working. Keep listening to all sides, get the big perspective. Use the really great work that the Institute for Educational Sciences (IES) has done to research what works.

The biggest problem with No Child Left Behind is that it has turned our schools into dreary places where "reformers" come in and make sure every teacher is "covering material" at the same time, lockstep, documenting those who are not on the pacing guide-- even when they slow down to make sure their students are learning. Many teachers have left schools because, as one told me, I was being asked to do things to my students that I felt were wrong. One teacher explained that the "reform" consultant who came to their school suggested that they stop teaching writing until reading scores came up. WHAT?

That is not reformed education, it is deformed.

Talent matters in education, Duncan said. I could not agree more. He should start by looking inside our own country at some of the best and brightest that are here, doing good work that has nearly been shut down under My Child Left Behind.

genetic basis of autistic behavior?

2008-12-15T12:37:00.000-08:00

I have often wondered about much of the psychological interpretations and therapies suggested for my daughter's autistic type behaviors. Though they are more politely couched, they are not far removed from the refrigerator mother theories-- that autism was a psychiatric disorder caused by the mother's rejection of the baby during pregnancy. Reading an article today about the behavioral impacts of mutations on the MecP2 gene made me more curious than ever. (Science Daily Sept. 26, 2008. Mapping the Nueron-behavior Link in Rett Syndrome.)

Vouchers to Where?

2008-12-12T07:06:00.000-08:00

Education Weekly reported that a voucher program for special education students failed to pass the state legislature this week. Few states have voucher programs for special education students. With good reason.

Part B of the Individuals with Disabilities in Education Act (ADA) already requires schools to provide free and appropriate public education for students (often called FAPE in legal speak). If districts do not have such programs, they are required to create them, or pay for education in an appropriate setting. There is no need for a voucher program. In fact, the voucher program may do more harm than good for special education students, in much the same way that it may for general education students.

Most settings outside of public schools are Non-Public Schools or agencies, and receive federal funds and are therefore subject to the regulation under IDEA and the Americans with Disabilities Act (ADA). Private schools often do not receive federal funds and therefore are not subject to these regulations-- in short, students may lose some of their constitutional protections in these settings.

Similarly, the voucher could release the school district from its responsibilities to follow the student in alternative placements (currently a responsibility for students in Non-Public School placements under IDEA) and provide related services such as speech therapy. This is currently the case under California law, if parents choose to remove a student from public schools without the school's agreement to place them voluntarily in a private school setting, the school district is released from its responsibility to provide services to the student. If the voucher does not cover all the students needs, will the district ensure those are met?

And which students are going to be able to use these vouchers? Very, very few private schools are able to serve students with special needs. Most do not have teachers certified in special education or aides for students. Since they do not receive federal funding, they do not even have to comply with the Americans with Disabilities Act. Those that do are almost always Non-Public Schools that serve special education students and do not require vouchers. So, as with regular education students, the voucher system will allow the highest performing students to attend private academies at public expense, drain much needed funds from a system already nearly abandoned by the wealthy and leave behind the neediest students with less funding and fewer resources.

Vouchers are another appeal to communities-- to us-- to turn our backs on the greatest public good ever imagined-- free education available to each and every citizen-- and create separate and unequal education systems that reinforce our deepening class divide. Vouchers are a cynical tool to further undermine public education by transferring public funds to private businesses.

Public schools are ours. They were built by our parents and grandparents and they belong to us, our children and our grandchildren as an inheritance and a legacy. Once, our schools were the best in the world. They can be again if we want them to. We own the properties. The employees work for us. Go to your local Board meetings. Join your PTA. Take back the schools and invest in your children, your community and your future. Vouchers will lead our country no where.

My Child Left Behind

2008-12-11T11:10:00.000-08:00

Every year, my aphasiac child sits on Santa's lap, and when the man asks what she wants, I always say her wish first, then mine: a Cinderella doll (or an Elmo doll or a Blues Clues book or...) and a cure for Rett Syndrome. It is a cheap shot I know, but I still childishly hope that the Big Guy has a direct line to a power greater than me and NIH. But until the cure comes, and just in case it doesn't, what I really wish for is more people to greet us in the supermarket, more invitations to join the PTA, more community organizations with ramps, more day cares that serve children like mine, more cool teenage girl clothes that fit over diapers and leg braces and more sleep . And for Special Education to finally be put on the "nice" list. And for Congress to finally, finally fund special education the full amount as originally conceived in IDEA, finally leaving only sixty percent an unfunded mandate and really leave no child behind-- even those that cannot keep up. With an education, someday my child may be running this blog, instead of me.