The cost of treatments and therapies for autism and how to pay for them. The question of what is the best/right/appropriate “treatment” for autistic children and is an educational/behavioral method like Applied Behavior Analysis (ABA) really a treatment that should be covered by insurance companies, or is is something that school districts (under IDEA, the Individuals with Disabilities Education Act) should be providing? Who pays, or who can pay, or who should pay, for what—-and what about speech therapy, occupational therapy, and physical therapy? And while ABA is widely used as a methodology for teaching autistic children, especially younger children in early intervention, what about for older autistic children? Given the troubled history of ABA and behavior therapy, it’s contested whether or not it’s a “therapy” that should be used.

Today’s News-Tribune (Tacoma) asks Who should pay for treating children with autism? and describes an effort in the state of Washington to mandate insurance coverage for autism and related disorders, with these specific points noted:

• Require coverage for ABA-based treatments, along with coverage for medication, occupational, speech and other types of therapy – as long as they are prescribed by a licensed physician or a licensed psychologist.

• Prohibit insurers from dropping coverage of individuals with autism based solely on their diagnosis. Forough and other parents say this has happened.

• Remove limits on the number of visits an individual can make to an autism treatment provider.

• Cap benefit payouts for treatment of autism at $50,000 a year – a figure that would be adjusted for inflation annually.

While we haven’t always agreed with ABA consultants about the best way to proceed in teaching Charlie, ABA’s been the mainstay of my son’s education since shortly after he was diagnosed. We’ve tried other teaching methodologies and—while I’ve my own questions about what I’ll refer to as the philosophical underpinnings of behaviorism—ABA’s helped Charlie to learn. We were able to provide for home ABA when Charlie was young (our families were quite generous). After that, since he was about 5 years old, Charlie’s received most of his ABA through his public school classrooms here in New Jersey, where the emphasis is not at all about “recovering” or “treating” autism but, of course, on educating students to do as best as they can.

Some families have noted that insurance companies and school districts have worked together to provide treatments for autistic children. ABA provided by the public schools (and integrated into classroom settings) has helped my son’s learning. That’s been our experience and I’m not sure what is the best situation and there’s plenty of room for debate and dissent about what is the best and the right teaching methodology and classroom situation for autistic students (and some discussion about ABA as a teaching methodology for autistic children ensued on this post about Framing Autism).

The Military Family Autism Equality Act (HR3690) will provide retired military families with autistic children the same health care benefits as active duty services members, today’s Mount Vernon Gazette reports. Some 8,784 retiree families stand to benefit, according to Department of Defense statistics. The legislation was introduced by Virginia Congressman James P. Moran (D-8) and Florida Congressman Jeff Miller (R). Currently, active duty service members who have an autistic child receive benefits through TRICARE, which provides $2,500 a month (a max of $30,000 per year) for Applied Behavioral Analysis; these dependents end when an active duty military person retires.

Congressman Miller’s description of autism suggests that a lot more understanding about autism needs to occur:

“This bipartisan bill to extend needed medical coverage for children of military retirees with autism is long overdue and I’m pleased Congressman Moran and I were able to address this issue together. Autism is an insidious disease inflicted upon our children and we should live up to our obligation to serve the children of those who have served this nation.”

Opinions differ about autism being a disease or disorder or disability; a difference but “insidious,” as something that spreads harm in a stealthy manner, like a rumor? An unfortunate misrepresentation of autism.

Laurie Duddy’s 8 year old twins, Tommy and Alex, both have severe autism. She—and a number of other parents of autistic children—are now studying for a master’s degree in Applied Behavior Analysis at Caldwell College in northern New Jersey. Today’s New York Times profiles the program and some of the parents who are studying in it:

In most states, a generic special education degree is sufficient to treat children with autism and to use the particular techniques of A.B.A., the only therapy for the disorder with proven results in peer-reviewed research. But many colleges and universities now offer specialized degrees in A.B.A. Graduate programs are offered at Northeastern University in Boston, Florida State University in Tallahassee, the University of North Carolina at Wilmington, the University of Maryland in Baltimore County and California State University in Los Angeles, to name a few. Administrators at several of the programs say they, too, have parents of autistic children among their students.

Caldwell’s graduate program is the only one of its kind in New Jersey, a state known for pioneering autism education and advocacy……..The state is thus a magnet for families from out of state looking for the best services for their children. Because of this migration, New Jersey has the highest incidence of autism in the United States: 1 in 94 children versus 1 in 150 nationwide, according to federal studies.

(Whether such a “migration” is the reason for New Jersey having the highest autism rate in the country is not clear; some other reasons include greater understanding and awareness and well-established early intervention programs.)

Most of the parents studying in Caldwell’s graduate program plan to continue to work as behavior therapists for autistic children and, especially, for older children and adults:

Martine Torriero, who has a 15-year-old son, hopes to run recreational and cultural programs for autistic teenagers. Delia O’Mahony, whose son is now 22, is interested in adult services, since children like hers “fall off a cliff” when they are past school age. Diana Kelly, who used all her skills as a lawyer to get her two sons properly diagnosed and treated — each has a different variation of autism spectrum disorder — does private consulting for families and schools as she works toward her master’s degree. She hopes Caldwell will add a doctoral program, too.

Until Charlie was five years old, I seriously considered becoming a professional autism teacher/therapist myself. I have learned a fair amount about ABA and different ways of teaching autistic students over the years and have found these more than helpful in teaching Charlie to take care of himself (tooth-brushing, for instance), to go out into the community (more on our visit to the Met later today), to help out around the house, and to play piano and cello. Parents learning how to be teachers of autistic students do bring something extra to the classroom:

By her own account, Ms. Kelly has tried just about everything, from A.B.A., which many families find harsh and robotic, to kinder and gentler programs with little data to support effectiveness, to special diets and detoxification. Each consumes time and money, Ms. Kelly said, telling her fellow students, as she does the parents she works with, that trying a little bit of everything is tempting but not necessarily wise.

“It’s not what looks good, it’s what works,” Ms. Kelly said. “And every hour spent doing X is time lost for Y.”

While I’ve found ABA to be very helpful for Charlie, I’ve also had a lot of questions and frustration about it over the years, and about the various ABA consultants and therapists that we’ve had (I’ve recounted Charlie’s ABA education and some of the criticisms of ABA here). As Charlie has entered puberty and now that he’s taller and stronger than me, some behavioral techniques have proved very useful when he has gotten anxious to the point of becoming aggressive. I can no longer use any kind of physical methods to help Charlie through a difficult moment.

Parents who’ve been there and done that can help to make autism education better, more effective, and always humane. And, I’ve also learned a tremendous lot by listening closely to the experiences of autistic adults such as some of the speakers at the April 10th Artistic Spectrum reading, including Cliff Schumacher (you can read his presentation here) and Amy Gravino (who is a student in the Caldwell program).