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Autism Advocacy Coalition of Virginia Working for autism families! |
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Autism Connections
Volume 1 Issue 1 November 2008
Autism Advocacy Coalition of Virginia Working for autism families! Autism Connections Volume 1 Issue 1 November 2008
Virginia moving on autism legislation
As we approach the end of 2008, several important bits of legislation are hanging out there and waiting to be resolved in the next year. 
A mostly unnoticed section of the bailout bill (or rescue package to any bankers out there) established parity in insurance coverage for “mental”and medical conditions. It may take some time in court rooms or elsewhere before this gets implemented but it is a trip worth beginning. This would fix the problem in all 50 states in one sweep.
Legislation has been introduced in Virginia to require insurance coverage for autism spectrum disorders. House Bill 1588 has been introduced by Delegate Robert Marshall (R-13th District) and Delegate David Poisson (D-32nd District) of the House of Delegates. The bill requires Virginia healthcare policies to cover applied behavior analysis (ABA) and other medically necessary, evidence-based treatments prescribed by an insured's treating physician or psychologist with annual coverage for up to $36,000 a year. This bill will face opposition from the powerful and well-financed insurance lobby which argues that ABA is an educational program not “real” therapy or treatment. This one will also face a difficult battle.
But the last measure is the most important – several agencies and study commissions in the Commonwealth are studying how to create a “home” for autism among the various state agencies. For the past two years, autism groups have fought efforts to locate services for our citizens with autism in the controversial Department of Mental Health, Mental Retardation and Substance Abuse Services (DMHMRSAS). This year Virginia has narrowed the question to “Where in DMHMRSAS do you want to place services for citizens with Autism?” It’s the wrong question and this year will probably see another battle between parents and the bureaucrats (and even some autism groups who do the DMHMRSAS bidding in Richmond).
We will aim to get as much help as quickly as possible for our families. Please make that phone call or send that e-mail if we ask you. We know your time is better spent elsewhere but this legislation could have a dramatic effect on our future. AAC-VA Workshop Survival Strategies for Everyday Living 10/5/08
Quality of family life key to autism treatment outcomes
Upcoming AAC-VA Events First Legislative Summit to discuss legislations affecting Virginia autism families Part 2 of series entitled Survival Strategies for Everyday Living that focuses on social interaction aspects of autism Join the AAC-VA Community at
While families depend on expert guidance from professionals to improve outcomes for their family members, they also expect to play a key role in treatment planning and outcomes. According to an article published in 2007, in the journal Pediatrics, treatment models for autism are shifting from one that is expert-driven to one that is family centered, where family concerns and quality of life are key pillars required for successful outcomes. With such a shift comes (1) the need to develop a clear treatment framework that defines how families can be involved and (2) the need for support structures that families can count on so they are better prepared.
Quality of life is defined by an index that measures “well-being” both in the physical and emotional aspects. Little has been done to study quality of life of autism families. The above article in Pediatrics also found that parents of children with autism have the highest stress levels compared to parents of other developmental disabilities (55% were highly stressed vs. 44% for other development disabilities). According to the article, the additional stress faced by parents of children with autism, is, due to challenges in (1) the children’ inability to communicate (2) the children’ difficult behaviors (3) social isolation (4) children’ difficulties in self-care and (5) lack of community understanding. Parents face increased psychological distress, including depression and anxiety and stress related to decreased family cohesion and increased somatic complaints and burnout. Others studies also list the following factors that lead to stress (1) the long process to obtaining diagnosis (2) lack of respite care (3) financial burden of treatments and inability of one parent to work.
Improving quality of life of autism families will need (1) strong programs that educate families on research-based treatment methodologies (2) programs that educate professionals (both private and public) on research-based treatment methodologies and how to include families in treatment plans (3) emotional and psychological support structures for families (4) incentives for trained respite providers (5) associate degree programs in community colleges for young people who want to work with individuals with autism (6) community framework that meets the individuals needs seamlessly from home, school and other community programs (9) community awareness programs (10) financial support for medical and respite care for families. These are some of the areas that AAC-VA is working in.
Family Connections…
In this section we share stories from families with autism. To share your story, email newsletter@aac-va.org
“Our journey to discover Jordan’s autism was a long slow trip. Because he did not present as “typical” autistic child we spent a lot of time going from doctor to doctor trying to figure out why he had such bad temper tantrums and would become withdrawn when anyone he did know would speak to him. When we finally found out it was somewhat of a relief. However, the discovery only increased our concerns and questions about the future. The most difficult question I had to ask his doctors, one of which I was not sure I wanted to hear the answer, was whether he would ever be able to live independently. Despite my incredible fear of the answer they were very hopeful and said that he would always have autism, but with medication and support he would probably be able to live on his own. Jordan’s autism has been a challenge and has forced me to reexamine everything I do and how I approach other people. However, despite the difficulties in raising a child with autism, he is wonderful child with a quirky sense of humor. He surprises me every day by the way he views the world and teaches me how to see and do things differently. Although I wish life were easier and less confusing for him and perhaps easier for me, I would not trade him for anything or my experiences with him.”
"What is PDD-NOS? It's an autism spectrum disorder. I tried to focus on the pediatrician's advice on what to do next. I could barely hear him over the voice in my head screaming, "Rainman!" That - and the very scary episode of Law and Order about shock treatment and facilitated communication- were the only things I knew about autism. Since my son was three, I thought I had dodged the bullet of developmental disorders. I hadn't. Brain disorders are so scary, since our brains make us who we are. If my son's brain was changing, who would he be? He had been very precocious, both verbally and socially. He was toilet trained at 19 months and was starting to read at 2 1/2. He was friendly and talkative to children and adults. Since he was a year old, he could identify the make of every car, parked or in motion. Neighbors loved to show him their new cars, and he always knew what they were. Then Clifford became shy and started to regress on toileting. His best friend had just moved to Colorado and was regressing a bit, too. So this was just a phase, right, like he had gone into and out of at 18 months? It wasn't.”