Jennifer Silverman of Queens is a co-editor of the anthology "My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities."
For those of us parenting kids on the autism spectrum, getting appropriate services can be like peeling an onion: There always seems to be another layer to get through, and when we get to the end we most often have tears in our eyes.
We have to fight and negotiate for our children to get supportive educational, therapeutic and health-related services - nothing is approved without substantial documentation and insistence.
For each service we need, there are psychological evaluations to be updated before we can start the paperwork that we fill out for the place on those waiting lists, where we languish with the hope that we'll get what our children need to reach their potential.
Anything that cuts through this process is a welcome change, so when I read that New York State was proposing insurance legislation to help people with autism spectrum disorders not be excluded from coverage, I was cautiously optimistic.
The caution comes from parenting my now 12-year-old son, Luc, who has autism and considerable developmental delays and behavioral challenges, and the maze of services we've navigated over the past decade. Ten years ago, when we started the emotional roller coaster of having him diagnosed, I had reasonably good private health insurance. I wasn't interested in going through the state's Early Intervention program, so I contacted our insurance hotline with Luc's referrals for speech, occupational and physical therapy.
The insurance company representative on the other end of the phone line ended my naiveté quickly by informing me that unless he made significant progress within six weeks, all of these therapies would be terminated. Since it was clearly impossible that a 2-year-old with delays of nine to 12 months in those areas would make instant progress, that was the first and last time I tried to rely on our family insurance.
Our subsequent experience with our Early Intervention therapists was outstanding - but that was really the luck of the draw; they were assigned to us, not chosen by us. Since then, my son's significant developmental disability has gotten us approved for the extremely helpful Home and Community-Based Medicaid Waiver, to supplement coverage of his health needs and keep him living at home. But it puts us at the whim of regularly threatened budget cuts. There are yearly stressful recertification snafus, and we are limited to providers who accept Medicaid.
Could it really be possible for our family to access more services and have more provider choices? This is where my optimism crept in.
As a layperson and parent, I read the language of the bill, which was passed by both the State Senate and the Assembly last month, with interest, trying to see what effect - if any - it would have on my son's life. When I got to the language that therapies would be deemed eligible for coverage by a committee including members of the State Health Department, Office of Mental Health, Office of Mental Retardation and Developmental Disabilities along with the insurance commissioner - and only if they were "evidenced based, clinically proven and peer reviewed" - I was stumped. Why so ambiguous?
I hadn't expected that the alternative therapies like hippotherapy or craniosacral therapy, which some parents find helpful, would be covered - but what about the more traditional approaches like physical, occupational, speech and behavioral therapies?
The national advocacy organization Autism Speaks, a staunch supporter of this legislation, asserts that alongside "sleep abnormalities, seizures and gastrointestinal problems, the bill would cover speech therapy, occupational therapy, behavioral health treatments (including Applied Behavior Analysis)," among other treatments. It also has support from the New York State chapter of the American Academy of Pediatrics.
Meanwhile, a consortium of New York autism organizations working together under the name New York State Advocacy Central for Autism has publicly raised concerns that the bill is actually a step backward - a compromise crafted with help from powerful insurance lobbyists that doesn't guarantee that any type of coverage will meet the standards of "evidence-based and peer-reviewed." Some of the groups within the consortium are calling for Gov. David A. Paterson to veto the bill.
With so many uncertainties in my son's future and care ahead of us, I find myself leaning more toward the skeptical view. I'd be much more comfortable with a set list of approved and excluded therapies.
Luc's care affects our family's health from a financial perspective, and it can affect our ability to be his caregivers. As many studies have shown, the out-of-pocket costs of raising a child with disabilities can be significantly higher than those of "typical" children, and, simultaneously, having children with disabilities can preclude parents' participation in the workforce. My family has found a middle ground, where my husband works part time and is our children's primary caregiver (often on little sleep), but our household budget can't take many surprises.
Luc, as a nonverbal preteen with a pre-K academic level of achievement, needs constant supervision and help with all daily living activities. It costs an estimated $2 million to $3 million to raise a person like him over his lifetime. At my current family income, I would have to work for the next 416 years to cover that expense.
We'll know for certain what is and isn't covered within a year if Paterson signs the bill into law. For the 17,000 students ages 4 to 21 who are classified by New York schools as having autism - and for their families - I hold out the hope that the bill gets us what we need.
A year from now I look forward to comparing this law to an orange: easy to get to the core, and immediately, pleasantly satisfying.