Today Palin is discussing her support for funding for Special Needs kids and what an important cause that is, focusing in particular on autism. She criticized Barack Obama's tax plan, alleging it could--in rare cases--tax families who squirreled away tens of thousands of dollars in a trust fund for their special needs kids. This likely does not include Joe the Plumbers who have Special Needs kids and do not earn enough to save.
A study in the American Academy of Pediatrics journal says that "more than 90% of children with special health care needs survive into adulthood," which means they will need lifelong services. For the ones who are clearly disabled and qualify for government programs, great. For those whose disabilities are less dramatic, McCain's healthcare plan condemns them to a life without services.
I rarely share this story, because it is personal and sounds unbelievable, but as they say, truth can be stranger than fiction.
My whole life has been steeped in "Special Needs."
In utero, my mother had a twin sister. The sister died during delivery, and as the story goes, my mother experienced oxygen deprivation during birth, causing brain damage. My mom speaks like a 78 RPM vinyl record played at 33 RPM (for those old-timers like me)--very slowly, and she has epilepsy. Her family always insisted her only issue was a speech disorder, though a later evaluation determined she had the intellect of a 9-year-old. Still, she is bright for this level of disability; she writes in cursive (even simple poetry), reads books, and lives in her own apartment "with assistance" from Social Services.
My father just turned 58; he was born 3 months prematurely, and measured 11"; such babies rarely survived back then. At first they thought he was dead, but a doctor used a coffee straw to suck mucus from his throat and revived him. At the time, it was standard to place premature babies in oxygenated incubators; months of this fried his optic nerves, leaving him nearly blind, with just 10% vision in one eye.
I cannot explain how my father hooked up with my mother or why, except to say they married when she was 19 and he was 16, and I was born 13 months later. They divorced when I was 3, a major custody battle ensued, my mother was committed for a fitness evaluation, and my father won.
Two of my sons have Asperger's/ADHD, the third has ADHD and seems on the spectrum, and it appears likely I have these conditions (in 6th grade, my stepmother insisted I undergo an evaluation because she felt I "must be retarded somehow;" the test results said only that I was "very bright"). I haven't seen my mother since age 12, and I now wonder whether she had some form of autism-- but I will likely never know.
Like McCain says about Sarah Palin, I know a lot about autism--particularly Asperger's.
Japan and Europe--especially the UK--know alot about Asperger's, too, because they accepted it as a legitimate diagnosis more than a decade before US experts. So I am going to share some statistics from UK studies to illustrate why the McCain Health Care Plan fails adults with Asperger's (AS) and high functioning autism (HFA).
There are over half a milion people in the UK with an autism spectrum disorder - that's around 1 in 100. [The US has about the same ratio of autism spectrum disorders (ASDs). --Ed.]
Here are some statistics from UK studies:
62% of parents of children with AS/HFA say their son/daughter cannot live without support; less than 10% can manage basic tasks (shopping,
preparing meals, laundry, paying bills, managing
money) unassisted.
40% of adults with HFA or Asperger syndrome live with their parents; only 3% live fully independently (no financial support).
Despite their higher intellectual abilities, only 12% are employed full-time; 6% are employed part-time. Those who are employed tend to be "underpaid" or "underemployed."
67% have experienced anxiety and 55% depression because of a lack of support.
Because people with AS/HFA are intelligent, they rarely qualify for disability, including healthcare services. Some individuals with AS/ADHD benefit from pharmaceutical treatment, but without medical insurance, they will not get those treatments, inhibiting their ability to live independently.
Yet the health plan Sarah Palin and John McCain support makes no consideration for pre-existing conditions and does not require mental health parity. Furthermore, John McCain wants to trim money from Medicare, which covers healthcare for people with Special Needs.
McCain says he will work with state governors to create "guaranteed access plans." These are really "high risk pools," where people with pre-existing conditions are guaranteed coverage--but they still pay for it. They pay far more than one pays for a conventional health care plan. Additionally, he may "work with state governors," but he is essentially leaving it up to the state to decide what they will do. In times of economic crises, it is unlikely many states will fully fund such programs. This has been a persistent problem with existing healthcare programs; for example, Hawaii just announced it was going to end its program that provided free health care for children.
People with AS/HFA rarely qualify for disability, and they are frequently underemployed/unemployed. They will not be able to afford a high-risk plan nor will they have access to Medicaid plans.
Further, adult children with Special Needs are usually cared for by their parents. This means that making sure the parent stays healthy is essential. Caring for an adult child (or any child) with special needs increases stress. Stress is directly related to a number of heart disorders, cardiovascular events, and strokes. They also have higher rates of mental illness, particularly depression. What about the diabetic parent of a Special Needs child who has insufficient healthcare to pay for treatment? These patients are at high risk of complications such as blindness, amputations, and yes, death. Blindness and amputations make it particularly hard to care for an adult with special needs. Diabetes is soaring in the US, and expected to become a major crisis by 2030.
If you do not keep the parents of Special Needs children healthy by providing healthcare to them, there is no one available to take care of the Special Needs adult.
Sarah Palin can talk all she wants about how her heart aches for Special Needs children, but the ticket she is on and the plans she advocates put the health and security of these children at tremendous risk as adults. In some cases, when a parent becomes ill or dies, it will result in homelessness, institutionalization, or improper care.
By emphasizing preventive care and making it available to everyone, as Barack Obama's health plans hope to do, you help parents of Special Needs children live longer, more productive lives. This puts them in a position to better care for their adult children--as most prefer to do. We love our children; we do not want them struggling without our support as adults. Keeping parents in a position to care for their adult Special Needs children reduces the burden on taxpayers to fund this care and, in the long run, helps pay for any increased costs for universal health care.
Further, by expanding healthcare services to encompass people with AS/HFA, you help these intelligent, capable people live more productive, independent lives and maintain gainful employment (often in science/technology, areas where America lacks qualified workers). This expands the taxpayer base, reduces poverty, and reduces their need to rely on welfare services. This is yet another burden lifted from taxpayers' shoulders.
There is so much room to improve our healthcare system through preventive care, early diagnosis, and early treatment. Like repairing weakness in a bridge before it collapses, this will result in lower costs for individuals and society. It will reduce the burden on taxpayer-funded healthcare plans and private insurers, and make more money available to improve services and explore new technologies.
I hope someday Sarah Palin learns that caring about Special Needs children involves more than trotting out your Special Needs child for photo ops and touting your decision to keep the child despite knowing his condition as an opportunity to score political points.
For example, I cannot imagine having the luxury she has to campaign. No doubt, at her income, she will not have to worry about how to provide care for her son. She can buy care. Meanwhile, I reserve my lunch hour every day to drive to the school, pick my son up, and bring him home (where my 17-year-old watches him) and then drive back to work to finish my day.
I cannot emphasize enough that babies with Special Needs grow into adults with Special Needs. At that point, they are too big to haul onstage and are not as suitable for cutesy photo ops, yet their families need as much or more help than ever. The McCain/Palin health plans make no provision for their needs. Further, they oppose things like income inequality for women and family leave acts, things that would help families with special needs children (we have high rates of divorce and often end up as single parents). They want to take funds from public schools--the only option for education for many of us--to give them to wealthy people to reduce what they pay for private school tuition--tuition they likely would elect to pay regardless. Yes, poor people would get vouchers, too--but a $10k voucher--like their health insurance tax credit--doesn't cover the full cost, which most cannot afford to supplement.
I am tired of McCain/Palin using Trig Palin in a blatant attempt to manipulate families with Special Needs children into voting for them. Trig Palin deserves better, and so do Special Needs families.