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.

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. 

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)

Funding Disabilities

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. 

Requesting an AAC assessment

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)

The trouble with Jerry

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.

Happy Birthday Dr. King

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

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

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

IDEA- fund special ed!

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?

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

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

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. 

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. 

Pre-Natal Testing

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. 

Assistive Technology- fight for promise

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.