Families affected by autism are flooding the capitol with pictures of their children and sad descriptions of sacrifices made because the state does not adequately fund autism services for children or early diagnoses of the disorder, which includes a spectrum of tragic syndromes. Much of the action comes in support of a bill that I am carrying (SB 164) that would appropriate $7.7 million for services for these kids and a bill carried by Sen.Cynthia Nava (SB 197) that would mandate insurance coverage of therapies.
The mass outpouring coincides with a new study that shows that about one out of every 150 children has some form of autism. Results of the study, published in the Morbidity and Mortality Weekly Report (how’s that for fun reading?), says that the increased prevalence is an “Urgent Public Health Concern.”
Those of us who have heard these parents either during the session or before the interim Health and Human Services Committee have found out that if you’re a parent of a child with autism in New Mexico you’re almost totally out of luck, especially during the critical early years of your child’s life when early diagnosis and treatment can make a HUGE difference. There’s a three year wait for a diagnosis at the only place in the state that does it -- the UNM Center for Development and Disabilities at UNM. And, there’s a six year wait for services under the DD waiver once a diagnosis is made. Even if you do get services through the Medicaid waiver program, adaptive skills therapies are not included.
Sound impossible? It is for the two thirds or more of families who receive no services. Many send their kids out of state for residential treatment, move elsewhere, or give up their businesses, any thought of a normal life, or even middle class status for their families. In other words, the families assume the whole burden -- heroically in many cases.
Now’s the time to contact your Senators and Representatives about funding these services through Medicaid as well as more dollars for parent assistance and more funds for the UNM Center. The Governor recognized the need and has requested $1.75 million for parent training and the UNM Center. We should really do more -- but the legislature will only act if they hear from folks like you. Ask members of the Senate Finance Committee and House Appropriations ( listed on legislative web site-- http://legis.state.nm.) to make sure more funding is included in House Bill 2 or if they could “chip in” for funds in House Bill 2 Junior. Both bills are being put together now so quick action is important.
Why should people who are not affected by autism care? It’s simple. It’s my philosophy about all these health care issues: “There, but for the grace of God, go I.”