Autism Funding Should Be Urgent Concern for Legislators

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.”

Comments

[Jesse W. Childers]

Dear Senator Feldman;
My wife has been having problems since she was small, unfortunately she was never diagnosed by any medical personnel. I recently attempted to have her diagnosed as an adult for Autism and have found that nobody wants to test without charging lots of money or they just refuse. I have insurance but it seems that they refuse because it may take some time and effort without them being compensated properly. Do you know any doctors that do diagnose using insurance.

Sincerely,
Jesse W. Childers
505/844-3391 (w)
505/898-1175 (h)
505/688-3391 (c)
my email is: jwchild@sandia.gov

[Patti West]

For New Mexico autism parents interested in participating in research to discover the current resources and needs of children with autism in New Mexico, please follow this link.
http://www.zoomerang.com/survey.zgi?p=WEB2269EH7E4Y9
Thanks!

[Patti West]

Hello, I am the mother of a 4 year old autistic boy. I appreciate everything you have done to help families like ours. So many times, I think our cries fall on deaf ears, so thanks for listening.

If any of your readers are interested, there is some important research going on in NM for parents of children with autism. We are studying the resources currently available in New Mexico to try and find out the best direction for the state to go in the future. The results will be available to state legislators as well as respresentatives from value options. In addition, the results will be presented at an academic research symposium at WNMU in May.

Thanks Again!-Patti West

[Natalie]

Thank you for supporting this cause and carrying SB164. We are one of those families that sent a photo of our six year old. His initial diagnosis was done in Illinois (with a three to six year waiting list) and is now managed here in NM. Between autism and aspbergers, there are millions of children and their families affected by dealing with lack of funds, insurance, medications, behavioral aspects, dealing with the schools, and, in general, just trying to get enough sleep at night to have the energy to wake up every day and deal with our children. It is a daunting task and a taxing way to live. It is all we that we know and we love him... so, every day we work within what little system there is for us and within his world... though narrow that may be.
Thank you... from the bottom of our hearts.

[Chris King]

Thank you Senator for supporting this cause. One clarification is that the waiting time for the DD Waiver is MORE THAN 6 years. We have been waiting 6 years and are still not receiving help.

The unfortunate thing is that studies have been performed to show that monies invested in services are rewarded with government savings in the future.

We will be bringing our kids to the capitol on Monday so that all of the legislature can see first hand what an impact this has.