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.
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