Story Ideas-Costs

This posting was submitted from a father who wants coverage on costs. This item was emailed to this on this blog--AR

Hi, I'm Bill, I saw your post on the Autism Speaks board (I am known as livsparents there). If you are going to do a series on autism, you simply MUST do at least one segment on costs of autism. It can be tackled from several different angles:

• The cost to school systems and the local battles that ensue for parents to get the services that their children need vs budgetary constraints
• The cost of therapies for children for Applied Behavioral Analysis, Speech, Occupational, sometimes physical therapies
• The insurance battles to get these therapies covered.
• The run around that parents get between schools and/or insurance companies to have therapies covered. Therapies are often classified as educational and are denied by insurance on that basis (therapies should be done by the schools, they say). Non-restorative is the term often used by insurance saying that these children never had speech and that therefore speech is not covered because you are not trying to 'recover' speech already lost. ABA therapies are deemed 'experimental' by insurance even though it is probably one of the main strategies employed to help autistic children. Occupational therapies are not recognized as therapies for autism because of the aforementioned non restorative and because they can take many months to years to see benefits (occupational should be used to restore from 'injuries', insurance says)
• The financial devastation families go through getting their children the therapies they need and don't get within the school system or covered by insurance. I love to know the bankruptcy figures for families with autistic children
• The 'cost' of mainstreaming adult autistics; what is being done vs what COULD be done. Many of these adults may be 'underemployed' because of their 'social' disability; they may be competent and able, but may make potential employers uncomfortable.

You can see the potential for story lines here; the day to day financial and time management struggles that most families with autistics go through are an underreported and much needed story to be told.

If you'd like to peruse my blog, I am at http://livsjourney.blogspot.com/ .
We have 5 children with our two youngest, 5 and 3, on the spectrum. My 5 year old, Olivia (Liv) is more severely affected, she is non-verbal and has various 'stims' (repetitive behaviors); the younger, Grace, is verbal and from outward appearances may be mistaken for a neurotypical child; but she will script and echo (scripts her favorite shows like Dora the Explorer and will echo things like saying "goodbye Gracie" rather than "goodbye daddy")


Thank for your attention to the autism issue,

William Kuhles