Broken Promises for Parents of Autistic Children in CA
Posted On Behalf of Jennifer, San Mateo County (CA)
As a parent of a child with autism, the most important thing I can do is make sure that my daughter continues to receive critical early-intervention therapy. Medical research clearly shows that early and consistent therapy can make a dramatic difference in the kind of future autistic children can lead. My family, and our whole community, have a stake in this treatment.
For that reason, I am both shocked and concerned by California’s lack of regard for children with autism. As the state rapidly move families covered by the Healthy Families Program over to Medi-Cal it is still unclear whether children will have the necessary medical services they need.
My daughter is 5 years old and has been receiving autism support services under Healthy Families since she was 27 months. With this support, she receives hours of Applied Behavioral Analysis (ABA) therapy; the leading treatment for children within the Autism Disorder Spectrum (ASD).
When she was first diagnosed, my daughter had regressed to zero eye contact and was living in a world of her own. Watching her progress through therapy has been a Godsend. Soon, my daughter was making eye contact again and even communicating with us. Here progress has affected our entire family, decreasing our stress level and increasing our quality of life. This treatment has been more than a therapy for my daughter, it has and continues to literally change her life for the better.
Unfortunately, all of these gains and the future benefit for her may be at risk.
Starting in January of this year - despite an outcry of concern by autism advocates, children’s health advocates and legislators – California officials began to move to move all children covered by Healthy Families over to the Medi-Cal program. They did so with the assurance that our, “children would not lose any benefits or services they had under Healthy Families.”
After initially hearing about the transfer, I immediately reached out to my insurance provider to find out the details of the transition and how it would affect our coverage. I was excited to hear that I, and in turn my daughter, would “not lose any therapy through this transition.” However, when I reached out to Medi-Cal directly, they told me the opposite. To my surprise and ultimate confusion, I was told that Medi-Cal "WOULD NOT" cover ABA.
Families that have already been transferred are reporting that the type and quantity of support has been severely cut under Medi-Cal. Recently over 200 children transitioning from Healthy Families to Medi-Cal -- like my daughter -- were informed that they will no longer be able to access critical behavioral health services once transferred to a Medi-Cal health plan without an answer to why or any alternative to this abrupt discontinuation of services. Although the transfer has not yet happened for my child, I have a growing concern that we won’t continue to get the treatment she deserves. Today, my daughter continues to reach all her goals, gain skills and now attends a regular preschool with an aide. My hope is to have her attend school independently but without the therapy I don't think her chances will be as great.
I am calling on Governor Jerry Brown and his administration to seek a solution immediately or suspend the future phases of the Healthy Families transition to prevent any further children from losing vital services. Lawmakers, advocates and parents were all told that this transfer would not result in a change in services for our children. It’s time for them to make good on that promise.
A Special Thanks from the MomsRising Team to Jennifer for sharing her story!