Despite their community-activist exteriors, Steve and Angela Brown are still struggling to navigate their way through the struggles that go along with raising children with autism. Starting with the 172-page Pennsylvania autism services guide, the one that Steve couldn't help but drag all around the house, finding any of the necessary services for their children is daunting.
The guide is supposed to help parents of autistic children apply for a range of services offered by the state government and was actually designed to make the process of applying for them easier and simpler. But despite its original intentions, the packet in its final form stretches to what could more fittingly be called a book and is filled with an alphabet soup of organizations and page after page of complicated instructions.
"You need someone to educate you on this," Steve said. "A typical parent can't just read this and understand it.
When the Browns wanted to apply for a state program, they needed to elicit the help of a caseworker just to walk them through the process, even with the guide,
Applying for federally funded programs can be just as difficult. The long list of acronyms and obscure terms that describe the personal aides available for autistic children through private insurance and Medicaid is likely to leave any parent bewildered.
Autistic children in Pennsylvania are eligible for a specialized therapist known as a TSS or Theraputic Staff Support. These are educational aides who work one-on-one with a child, both at home and at school. They are in charge of regulating a child's behavior and implementing steps on an individualized treatment plan. That treatment plan is created by a Behavioral Specialist Consultant or BSC, who has a higher level of education than a TSS.