Your greatest fear, if you are the parent of an adult child with a disability, is that you will not outlive your offspring and leave them to a world where they are not protected, cared for and loved. As The Star's series on autism showed, many families struggle as their autistic young people work to make that transition.

Despite some good intentions, the state of California and insurance companies are frightening the parents of adult children with autism. In 2011, the Legislature passed SB 946, making our state one of the few that require health insurers to cover treatment for adults with autism.

Autism remains a truly confounding condition and there is much to be learned about its causes and treatment. Through applied behavior, however, we have seen great improvements in living skills, communications skills and self-care skills.

Parents were rightfully joyful when SB 946 passed. Their adult children would be covered by health insurance and they could get the treatment that could lead to independence or semi-independence. It hasn't worked out exactly that way, yet.

In August, Vista Center for Behavior Analysis held a panel discussion, featuring experts in autism and insurance, for parents of adult children with Autism Spectrum Disorder (ASD). Our goal was to help parents and others understand what services are available for adults with autism and how to access these services.

Parents who formerly received treatment services for their children from California Regional Centers were now to seek treatment from the private health care sector and either be reimbursed or covered by their health insurer. Parents told us they have been given little information about what services are available and covered through private health care.

Connie Lapin, one of our panelists and a parent of an adult child with autism who has been a leading advocate for those with autism, asked, "What is going to happen to all of these kids?" She described past practices in which people with autism were overmedicated and lived in homes in which they did receive effective treatment and were subject to neglect.

Rick Rollens, an internationally known autism speaker and the parent of an adult with autism, warned of the coming and overwhelming need for adult services. Adolescents and adults with ASD are being neglected. A law with all the best intentions has created chaos. These things need to happen:

The California Department of Developmental Services must step in at the regional center level and provide information and guidance to parents; the Department of Managed Health Care must hold insurers accountable and demand that they produce within 30 days a plan to cover adults with autism; and there must be forums held across the state to inform parents.

Vista is deeply involved in this issue and will continue to seek answers, prod government officials and insurers and advocate for our patients and all adults with autism.

Go here to read the rest:
Massel: More guidance, community forums needed on autism