Healthcare Reform for Autism

Having not written in this space since April, I sat down at my keyboard today prepared to write about my doubts that meaningful healthcare reform legislation for people with autism could be passed in the current political climate. Indeed, judging from the media coverage, I was beginning to doubt any meaningful reform for healthcare could be passed at all. But apparently, I (along with the media covering these events) missed the very first question posed to President Obama in his Montana healthcare town-hall meeting. It was from the mother of an 11-year-old child with autism who worried that new legislation might impact his eligibility for Medicaid, and therefore, his access to quality medical care. President Obama told her:

If you currently qualify for Medicaid — your son currently qualifies for Medicaid, he would continue to qualify for Medicaid. So it would not have an impact on his benefit levels and his ability to get the care that he needs.

It was a relief for the mother and I’m sure for most families with autism, but it doesn’t begin to cover the complexities of medical care needed or the current gaps in coverage that exist. I’ve written before about my personal struggles, even with “excellent” health insurance, to properly fund my son’s interventions. I’ll briefly reiterate as I believe our experience is highly typical of most families with autism who have insurance but are denied coverage for basic therapies for a variety of reasons.

• September, 2001 – Robert is diagnosed with autism. Insurance will not cover developmental psychologist or developmental pediatrician (respective office visit costs are $220 and $495 out of pocket). Insurance covers the neurologist who, ironically, looks at my son for 5 minutes and repeats his name over and over to no response. Autism diagnosis is confirmed.

• September – November, 2001 – At the suggestion of a speech pathologist, we enroll Robert in speech-language therapy and occupational therapy 3x per week with the full expectation that our insurance will cover at least a portion of this expense. (Speech is $120/hour and OT is $120/hour = approximately $2880/month out of pocket.) We pay up-front as the need for early intervention is critical. Insurance denies our claims.

• I appeal repeatedly, over the phone and in writing, to the insurance company. At the time I was employed by one of the largest corporations in the world whose benefits were said to be “stellar”. Georgia is one of only 6 states at the time with laws regarding autism insurance coverage:

If a policy includes benefits for neurological disorders, it is prohibited from denying benefits for autism. Such benefits are subject to the same terms and conditions as those for neurological disorders (Ga. Code Ann. § 33-24-59. 10)

• The insurance company continues to deny coverage, citing a clause that speech-language therapy and OT are “educational in nature” and therefore not covered by the policy. When informed of the Georgia law, they continue to deny. I contact Georgia’s Insurance Commissioner.

• October, 2001 – During a joint speech-OT session, at age 4, Robert says his first sentence: “I want more round and round please.”

• November, 2001 – Having spent nearly $9,000 out of pocket in 3 months, we’ve exhausted our financial resources (we were lucky, but we were in our late 20s and hadn’t amassed a great amount of savings) and have to pull Robert from therapy. The insurance company will not reimburse any of the expenses.

• December, 2001 – The Insurance Commissioner informs me there is nothing their office can do because the large corporation I work for is self-insured and therefore is not required to follow state law regarding coverage for autism.

• January, 2002 – We learn of Georgia’s ‘Katie Beckett Deeming Waiver’ for children with autism. It allows children to receive Medicaid based on their diagnosis as opposed to their families’ income level. Robert qualifies and we get him back into speech and OT twice per week thanks to the waiver.

This is where I’d like to stop for a moment and refer back to the question placed to President Obama regarding Medicaid. For many families with autism it has been an absolute life-saver, including ours. My son might never have learned his current communicative abilities without it. We already know life will be challenging enough for him, but at least he will always be able to express his wants and needs in a way that others can understand. But here’s the problem with relying on Medicaid. Medicaid is both federally and state-funded. With the recent economic collapse, we’ve seen states slashing their budgets by as much as 30%, cutting teachers, firefighters, police and other essential services. When this happens, there just is not enough money for Medicaid to cover kids with autism. So they start raising the eligibility bar. Here in the state of Florida, if a child is able to use the toilet independently, he/she will not qualify for Medicaid. What this does, in effect, is take kids who may eventually be able to function independently (those who are less impacted by their autism) and remove them from beneficial therapeutic activities. It hurts kids who benefit the most from therapy. I’ve spoken to several friends in Georgia whose children no longer receive the deeming waiver due to the state’s budget crisis.

This brings me to a larger point, and it’s why I believe so heartily that our current healthcare system is broken. Why are insurance companies, who are paid premiums, allowed to shift the burden of coverage away from themselves and onto taxpayers? It’s bad enough we parents of autism have to fight battles in the schools or be perceived as wanting or getting “something for nothing”. But to expect states to cover these costs is unrealistic and unsustainable. Not only that, but it is incredibly short-sighted. How many autistic children will be institutionalized by the state as adults because they lack basic skills that they could have acquired given proper care and coverage? How many millions would it cost to care for an adult with autism? And is it the humane way we as a society treat the most vulnerable among us?

I recently had a political discussion with a friend who is a libertarian. He asked me, in all sincerity, if my son (and my family) wouldn’t be better off if the government simply “stayed out of it” and gave us the money we pay in taxes so that we could do what we wanted with it for our son. My reply to him was this – Autism is bigger than me and it is bigger than my family. We need a community. My son needs to be exposed to typical peers in order to learn language and appropriate behavior. I can’t provide that by myself. He needs an education (which I am currently providing) to help him learn to function productively and independently. Even on my best day I’m not as good as the aides, teachers and classmates who were all a part of his learning and development in public school in Vancouver, BC. He didn’t ask to be born with autism. His autism wasn’t the result of bad “life choices” or lazy parents or anything else. It happened. We are taking responsibility as much as we can. But we cannot do it alone.

This might not be so frustrating if I hadn’t seen it done well. Most who read this know we lived in Vancouver, BC for three years. Vancouver schools practice full inclusion, some better than others. Robert had a series of aides, one was a little difficult but two were outstanding. Every teacher he had took an interest in him and his development. The students in his class were kind and involved. They all benefitted along with Robert from inclusion. The BC government gave our family (as well as all families with autism who qualified) a budget of $7,000 per year (it is $20,000 per year for children under 6) to spend on necessary interventions and/or equipment. We rarely spent the full budget because Robert received excellent therapy in the public school. But we were able to use the funds for an excellent twice-weekly social/community skills program. He made such incredible progress. So much so that I will not enroll him in any Florida public or private school because it would be a giant leap backwards. He also saw a pediatric psychiatrist once per month with the visits fully covered by Canada’s universal health insurance.

People may wonder why we didn’t just stay in Canada. All our family is in the Southeast US and we missed them terribly. My husband got an excellent job with the same company here in Florida. We were able to buy our own home again. And we’re Americans, dammit. I hope that one day I will be able to speak longingly about the excellent healthcare and education my son received in Florida. But there’s a long way to go.

Peace.