I do not have autism but I have two children that do. I have not been able to visit the Daily Kos recently because of some major battles I have been having with my new Democratic Governor, Ted Strickland of Ohio, and his administration. In 2006, I worked hard on his campaign. I wrote letters, typed registrants names on spreadsheets, cut fliers, stuffed envelopes, walked door to door with my two children. My motives were many fold. I wanted to defeat Kenneth Blackwell. I was so ready to finally have a democratic governor. I mistakenly thought he would finally help us parents that are raising children with autism. Instead, we get this.
The Ohio Department of Jobs and Family Services (ODJFS) and the Ohio Department of Mental Retardation and other disabilities (ODMRDD) proposed new rule changes that would eliminate medicaid funding for services related to autism. The rules were brought up to the JCARR committee on Feb. 19th and they passed. Here is a picture of me preparing testimony for the hearing.
Well, the parents lost that day. For those that are not aware, the most successful treatment for children with autism is Early Intensive Behavioural Intervention (EIBI) aka ABA. The problem with this treatment is that it is extremely expensive. It involves behaviour technicians to work with children 1:1 for 35 to 40 hours per week. The costs do go down eventually when the child progesses. It also needs to be overseen by a psychologist and every child needs case management to write the programs, review the programs, etc. The cost for a decent program can be anywhere from $60k to $90k for the first year. In Ohio, we have what is called an autism scholarship (ASP) in which we can waive services from our local school district and use that money ($20k) to apply towards this treatment. However, it still leaves the parent with a bill of $40k to $70k per year.
Many states have a standard formula. The children are cared for by the department of education until they are 21 using IDEA and FAPE. When they reach 21, their local county MRDD takes over in helping the parents find an institution for their child or provides waivers in which the parents waive the right to an institution and receive money to care for their children at home.
Every state has special education classes but very few offer the EIBI services that are necessary to help children get a start on life. Instead, they offer the traditional speech, occupational and physical therapy.
This is so frustrating because many children with autism are slipping by every day. I feel so bad for parents that find out that their two year old has autism and they know that the only treatment that has been scientifically proven to be successful is out of reach because of the large costs. Many states, like my own, are trying to pass autism parity bills which will force insurance companies to pay for these treatments. However, how can we force private insurance companies to pay when our own medicaid will not?
Please try to help me come up with solutions so that every child that needs treatment, will get it.