WASHINGTON – Improvements in autism treatment and support programs have failed to help many of the families struggling with the disorder due to high costs and little information,witnesses said at a Senate subcommittee hearing Wednesday.
So Sen. Thad Cochran,R-Miss.,vowed to put some legislative muscle behind making the gains accessible for all.
“Mr. Chairman,I am going to introduce a bill to modernize our laws on Medicaid reimbursement,” Cochran said. “We'll introduce something today.”
The Senate subcommittee discussed the latest research,treatments and interventions related to autism,a group of neurodevelopmental disorders characterized by communication difficulties and restricted and repetitive behavioral patterns. About 1 in 150 children in the United States is diagnosed with an autism spectrum disorder,representing more than a 10-fold increase from the early 1990s,said Dr. Thomas R. Insel,director of the National Institute of Mental Health.
Nearly half of autistic children achieve a higher education placement by undergoing applied behavior analysis,an intensive behavioral therapy,and the surgeon general has recommended it as a treatment program since 2001,said Nicole Akins Boyd,vice chair of the Mississippi Autism Task Force. Yet most insurance plans don't cover behavior analysis,said Josh Cobbs,chair of the Iowa Autism Council.
And coverage isn't much better under Medicaid,the government's state and federal health program for low-income people. Mississippi essentially eliminated speech therapy services in July,and most states cover only six weeks of speech and occupational therapy services every year,Boyd said. Moreover,low reimbursement rates discourage doctors from seeing autistic children.
As a result,parents who can afford a comprehensive treatment plan pay about $85,000 annually,said David Miller,co-founder of the Community College Consortium on Autism and Intellectual Disabilities. This cost makes comprehensive care unobtainable for most families and exacerbates an already stressful situation,leading to divorce in about 80 percent of families with autistic children.
Even as established treatments remain largely unaffordable,new interventions have sprung up,offering greater support to subgroups of the autistic population. Cobbs has treated his autistic son,Noah,9,through a telehealth model,which has linked the family by an interactive video system to professional support for teaching language and life skills.
“With high-speed Internet,it's like you're in the doctors' office,” he said.
Cobbs said the live training provided by the Celeste Foundation has improved his son's quality of life and lowered his family's stress since the consultation can occur at any time and at home.
“If Noah's having a great day and he's at home,we can replicate that,” he said.
Telehealth therapy provides similar patient satisfaction to established treatments at one-quarter the cost,said Andrew Chuofrine,product manager at Caring Technologies,a home technology firm for behavioral disorders. However,Cobbs said insurance rarely pays for telehealth treatments. In addition,there are no safeguards to regulate the quality of telehealth care.
A growing number of autistic students will be graduating from high school in the coming years,and many will seek to continue their education through community colleges because of their open admissions policies,Miller said. Without additional support,most autistic students will be unable to pass their classes.
A postsecondary life skills and vocational program for 48 intellectually disabled students,including those with autism,has been operating since 1995 at Taft College near Bakersfield,Calif. More than 9 in 10 graduates live independently,are employed and receive no outside financial assistance,Miller said.
Taft's program costs approximately $30,000 per student; however,most community colleges are limited by law to a maximum tuition of about $3,000 per year. The Taft program is funded through a regional center for developmental disabilities,but the lack of federal support has led to areas such as Northern Virginia offering almost no college education opportunities for autistic teens,Miller said.
To remedy this,Sen. Edward M. Kennedy,D-Mass.,has recommended allocating $35 million in the 2010 budget for college funding for students with intellectual disabilities such as autism. The money would support 1,050 students at 40 community and four-year colleges.
The bill promised by Cochran last week hasn't yet been introduced,and therefore nothing will happen until at least Sept. 8,when the Senate returns from its break. Spokesman Chris Gallegos said Cochran's staff is talking to the staff of Sen. Tom Harkin,D-Iowa,to come up with a bill that will increase the affordability of behavioral and telehealth services for autistic families.
Cochran's bill would join at least four other bills proposed in Congress this year that seek to improve research,treatment and support for autism disorders. None of the other bills has made it out of committee.