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Best Kept Secret

Premiere Date: September 23, 2013

'Best Kept Secret' in Context

Services and Programs for Adults with Autism



In the 1980s and 1990s, the number of children diagnosed with autism increased rapidly, and approximately half a million of those children are expected to reach adulthood over the next decade. This drastic growth, in conjunction with nationwide budget cuts, means that the need for support programs far exceeds available resources. Support services for adults with autism vary by state and may include health and rehabilitation services, residential programs, employment training, day programs, recreational activities and home care.

The majority of long-term government services fall under the following programs: Social Security Disability Insurance, Supplemental Security Income, Medicaid and Medicare. However, to qualify for these programs, most adults must be able to prove that their condition is such that they are unable to work, and the payments are often not enough to cover day programs, job coaches or other support programs that could otherwise help prepare individuals for employment and/or independence. In New Jersey, for example, state funds provide an average of $22,000 per high school graduate, but residential and support programs can cost anywhere between $35,000 and $90,000 per year. Eligibility for services varies from state to state, and families/individuals must reapply and go to the end of the waiting list if they cross state lines. Laws such as the Americans with Disabilities Act (ADA) and IDEA are put in place to ensure equal access to support programs, but cannot guarantee that individuals will be provided with adequate services. Adults can qualify for Medicaid community waivers, which provide additional services designed to keep them out of institutions and in the community, but these waivers can have a waitlist of more than 8,000 names, and some individuals face a wait time as long as 10 years.

While those with significant intellectual disabilities often have a strong chance of receiving state and federal support and individuals with high functioning autism are more likely to live independently and continue on to college and careers, those who fall in the middle of the autism spectrum may face additional challenges. They may have difficulty continuing on to postsecondary education or obtaining jobs without support (such as that provided by job coaches), but also have a harder time proving that their needs are great enough to qualify for major supportive care.

Many families and caregivers must work full-time in order to afford services, but finding transportation and programs with work-friendly hours can be challenging. According to the AFAA, transportation is a significant limiting factor for individuals with autism working toward employment and integration into the community, and one of the greatest financial burdens for families after housing. Additionally, many day programs operate from 10:00 a.m. to 1:00 p.m., a timeframe that is unlikely to coordinate with the schedules of working parents.

For public and private programs, financial constraints, capacity limitations and low staff numbers present major obstacles to meeting demand. Since autism has a wide range of characteristics and each individual has a unique set of needs and abilities, care and support services often need to be individualized to be effective. For example, higher functioning adults with autism like Erik, featured in Best Kept Secret, may still need job coaches throughout their employment, but often the staff or funding needed to provide this support is lacking.

Some parents, family members and teachers, discouraged by the lack of available and comprehensive support programs, start their own programs or pool their resources to create family coalitions, though this method is expensive. Such coalitions may take years to develop, especially when participating parents are working full- or even part-time. Since the filming of Best Kept Secret, Janet Mino has applied for a grant to open the Valentine Center, a center for young adults with autism that would provide transportation, therapy and activities during hours compatible with the schedules of working parents.

In July 2013, New Jersey senator Robert Menendez announced the AGE-IN Act, legislation to address the needs of young adults with autism who are "aging out" of public education and other support services. The new legislation would fund research into options for improving transition programs, including continued education, housing, healthcare, transportation and community integration.

Sources:
» Advancing Futures for Adults with Autism. "2009 Think Tank Report."
» Allday, Erin. "Experts Brace for Wave of Autistic Adults." San Francisco Chronicle, October 4, 2012.
» Autism Society. "The Autism Society’s 2013 Advocacy Agenda."
» Autism Speaks. "Adults with Autism: What Services and Programs are Available at Twenty-Two?"
» Burke, Cassie Walker. "When Autistic Children Are Children No More." Chicago Magazine, March 2013.
» Davis, Linda H. "Still Overlooking Autistic Adults." The Washington Post, April 4, 2009.
» Goehner, Amy Lennard. "A Generation of Autism, Coming of Age." The New York Times, April 14, 2011.
» James, Susan Donaldson. "Children With Autism ‘Fall Off the Cliff’ After Graduation." ABC News, April 30, 2013.
» McCarron, Bev. "Searching for Services for Adult Autistic Children." New Jersey Spotlight, October 29, 2010.
» "Life Journey Through Autism: A Guide for Transition to Adulthood." 2006.
» PBS Need to Know. "Adult Autism."
» PBS Need to Know. "A Generation with Autism, Graduating into the Unknown."
» Quartuccio, Alana."Senator Menendez Takes Action for Adults with Autism." Paramus Patch, July 16, 2013.
» "Unfinished Business: Making Employment of People with Disabilities a National Priority." United States Senate. Committee on Health, Education, Labor and Pensions. July 2012.
» Walsh-Sarnecki, Peggy. "Lack of State Services for Aging Autistic Makes Adulthood like 'Falling Off a Cliff.'" Detroit Free Press, April 25, 2012.



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