For Developmental Treatment, Let’s End ‘Don’t Ask, Don’t Tell’

It’s 2:30 at my house, and Jonah’s third therapist has arrived. Jonah, my blond 3-year-old son, sits tearfully in her lap with a book. Her no-nonsense approach has chopped his tantrum off at the roots.

For autistic children like Jonah, this home visit is part of “behavioral intervention” therapy. At this hour, dozens of therapists are whizzing up to houses like mine, teaching autistic children how to look into someone’s eyes, speak, play and learn. There are three boys like Jonah within three blocks of us.

Autism is a neurological disorder that causes social isolation, strange behaviors and odd or absent speech. Home programs like Jonah’s are based on a landmark 1987 UCLA study in which one-on-one home therapy helped 47% of treated children achieve normal IQs and enter regular classrooms. The remaining children also made progress.

In the no-cause, no-cure world of autism, it is the only method clinically proven to significantly improve a child’s outcome. Orange County families whose children are diagnosed with autism, Asperger’s syndrome or pervasive developmental disorder turn for help to the Regional Center of Orange County, a county agency funded by state and federal money.

The agency is responsible for helping young children with autism, including paying for home programs if needed. When the child is 3 or older, public school districts assume educational costs (including home programs), while the agency continues to provide other services.

It is the state and federal mandate of the Regional Center and school districts to help autistic children. Why, then, do these “savior agencies” almost never tell parents about home programs, according to most Orange County parents who have autistic children? Money, of course.

Parents are in the position of having to lobby one or both of these providers to authorize and pay for home programs. These programs fall under the unwritten “Don’t ask, don’t tell” policy of the agency and school districts. If parents don’t ask about programs, they aren’t told they exist. Even most parents who beg for a program, says special education attorney Shelli Lewis of Corona, are routinely denied funding if they don’t fight for it.

Home programs are expensive. Programs like Jonah’s are run by private agencies such as the Center for Autism and Related Disorders, or CARD. These are paid for by districts or the Regional Center, and consist of 30 to 40 hours per week of treatment. The cost ranges from $40,000 to $100,000 annually. Yet home programs, which should start by age 3, can gradually taper off after three to five years and help avoid a potential lifetime care cost of $2 million to $3 million per child. Plus, state and federal dollars are available to help offset costs.

But parents and educators say the Regional Center drags its feet with meetings and evaluations until the child turns 3 and their home program responsibility ends. The center says it knows it hasn’t supported programs as well as it might and is looking for ways to improve, but argues it has made progress.

Once the child turns 3, school districts typically offer kids 15 hours a week in a special education class and two hours of speech therapy, even for kids who can’t speak, scream for hours or panic at the sound of a vacuum cleaner.

Many confused families can’t afford a lawyer and simply give up. To its credit, the Regional Center says it intends to increase home program support. And some school districts offer in-house versions of home therapy. But a previous UCLA study found that school-based skills don’t cross over well to the outside world, while home-based learning does. And low therapist wages compromise district program quality.

Once a home program is approved, work begins. Someone must stay home to run the program, and that means devastated parents must sometimes mortgage homes, quit jobs or move. However, to most, it is worth the cost.

To help families, the Regional Center and school districts should:

First: Tell the truth. Sorting truth from routine lies (“We don’t pay for that”) becomes part of a parent’s life. Second: Inform all parents of home programs and other recognized therapies. Third: Work with, not against, parents and service providers. Fourth: Authorize funding for treatments, including home programs, within 30 days of declaring a child eligible for services. Fifth: Fund a job list where parents and therapists can make contact.

Six amazing months into our CARD program, Jonah is getting better. The boy who never asked a question looks at me nightly and begs, “Mommy, will you sleep with me?” He gives “shots,” using his stubby finger for a needle, and says, “I’m berry berry happy!”

I only wish RCOC and school districts would give every child the same fighting chance.