South Dakota's new IRSF Rep

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

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

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

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

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

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

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

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???

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!

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

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

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

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. 

1. 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. 
   
2. 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. 
   
3. 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

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"

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

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!

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

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

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

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

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

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

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...

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.

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

Cost Effectiveness

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

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

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...

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

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.