Having an Adult Conversation About Autism

April is Autism Awareness Month, and you may have already heard countless reports about the shocking fact that 1 in 110 – a full one percent – of American children have autism.

Because the majority of individuals with autism spectrum disorders (ASDs) are still under the age of 20, a great deal of attention has been focused on education.

But the problems facing individuals with autism does not end when they age out of school. In many ways they become even more demanding, difficult and costly.

In 2009, a Washington Post op-ed put forth a thought-provoking question: What coming social expenditure will cost more than a third of this year's
budget for the Department of Health and Human Services and be larger than the entire budget of the Energy Department?

Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually."

Click here to read more about that article. 

If elected officials think their states are in a fiscal crisis now, just wait until the tidal wave of 1 in 110 individuals with autism reach adulthood.

Some experts have calculated the cost of care over the lifetime for one person with autism can easily exceed $3 million. Conservative estimates for just one group home placement can exceed $200,000 annually. State operated institutional placements can cost as much as $1 million per year.

Anticipating their child’s need for almost constant support, parents are under growing pressure and are making the heart-wrenching decision to place their children in a residential facility once they reached adulthood.

Under existing state provided programs however, there are already long waiting lists for disabled adults in need of residential housing, day programs and full-time care.

Unfortunately, with funding cuts already decimating housing options for the disabled and dwindling opportunities available, beleaguered parents will also be forced to make the economically crippling decision to leave their jobs – which also means losing their health insurance – in order to stay home to care for their adult child with autism.

Clearly due to the economic realities there is a desperate need to create new models if states are going to meet the needs of this rapidly growing population.

One such model is already working in a few states and provides parent/family the option of a directed supportive home care program under Medicaid’s Home and Community Based Services Waiver (HCBS).

This is a practical, cost-saving program that allocates modest funding to families who can then hire caregivers for their adult child or provide the support themselves. Rather than the state paying for the much costlier program administered by a third party for-profit service provider – up to $200,000 annually for one group home placement – a parent directed program costing approximately $24,000 a year would give families the ability to keep their children in a home of their own.

There is no question that there will still be a need for long-term care facilities for those disabled adults whose parents are too old, or incapable for whatever reason, to care for their adult children.

Given the limited amount of funding available, it seems logical, in fact fiscally prudent, to consider how we allocate Medicaid dollars and make a supportive home care model, an option in every state for adults with autism.

As a compassionate nation, we spend trillions of dollars fighting for the security, dignity and human rights for citizens in other countries. Let us not abandon this country’s most vulnerable adults with autism who, without a “safety net,”are facing a very perilous, isolated and bleak future.

Deirdre Imus is the Founder and President of The Deirdre Imus Environmental Health CenterTM at Hackensack University Medical Center and Co-Founder and Co-Director of the Imus Cattle Ranch for Kids with Cancer. Deirdre is the author of four books, including three national bestsellers. She is a frequent speaker on green living and children’s health issues, and is a contributor to FoxNewsHealth.com. For more information go to www.dienviro.com