Services for Adults with Autism

Find Services Over Age 22

Woman helping younger woman with autism to fill out job application

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While children with autism are under the age of 22, they receive a range of free programs and services through government entitlements and the Individuals with Disabilities Education Act (IDEA). Once they turn 22, however, those entitlements disappear. This, according to some sources, is a "services cliff" over which families fall; the reality, however, is that most families can and do find significant support for their adult children. The keys to success, however, are research, planning, flexibility, patience, and tenacity.

How Adult Services Differ from Children's Services

The biggest difference between adult and children's services is that most services provided to children under IDEA are entitlement-based, while the services provided to adults are eligibility-based. In other words, while your school district must provide your child with free and appropriate education, your state and federal governments may or may not determine that your child is eligible for specific services or funding. What's more, while your school district must find a way to serve your child even if funding diminishes, government agencies may reduce services if budgets shrink.

A second major difference relates to the appropriateness of programs and services for a person with autism spectrum disorder. In school, your child may have had access to autism-specific classes, therapies, and programs designed with your child's specific needs in mind. As an adult, he or she is more likely to be lumped in with other people with developmental disorders of all sorts. This can be challenging, as adults with autism often have very different abilities, challenges, and needs from adults with, for example, Down Syndrome.

A third major difference in service provision relates to the organization(s) providing those services. Most autistic children receive the vast majority of services through their school districts. Adults, by contrast, receive services and/or funding through three agencies whose names vary from state to state. On the federal level, the agencies are:

  • Administration on Developmental Disabilities (ADD), which focuses on respite care, residential support, transportation, transition planning, and employment
  • Division of Vocational Rehabilitation (DVR), which focuses on job counseling, preparation, training, and support
  • Supplemental Security Income (SSI), which may provide financial assistance and Medicaid health coverage

Common Options for Adult Services

There are a range of services available for adults with autism; while those offered to your child will depend on a number of factors, there is a "menu" of possibilities. There is no guarantee, of course, that the quality of any given service or resource will be high; as always, it takes vigilance and assertiveness to ensure that your child gets what he needs. Some of the most common services available include:

  • Residential. For some adults on the autism spectrum, residential funding may pay for the costs of an institutional or group home, or for programs such as adult foster care. When such funding is not made available through ADD, funding may become available through Social Security's programs for individuals with disabilities or low income. Group and institutional living varies wildly in terms of quality and appropriateness for adults with autism; it is very important to not only check out the setting initially but also to maintain careful oversight.
  • Day Programs. Depending on the needs and challenges of an individual on the spectrum, state agencies may pay the costs of full or part-time day programs. Such programs are usually local, may offer transportation, and often include social, volunteer, and therapeutic activities. Day programs are tricky because they may be intended for "people with disabilities," and have few supports in place that are specific to autism—so it is important to check out the programs offered to be sure they are appropriate for your child.
  • Work Programs and Career Support. If your adult child cannot work in a competitive job, there is a good chance that funding will support some form of sheltered workshop which specifically employs people with disabilities. If your adult child can compete for and handle a competitive job, he or she made need help preparing for and getting a job. Once your child is in a work setting, DVR funding may pay for job coaching to help your child learn the ropes and manage any challenges that come up. In the long run, DVR expects its clients to handle work on their own.
  • Recreational and Community Programs. In some cases, funding will pay for your adult child to participate in programs such as Special Olympics or Challenger Sports, join a local Y, or otherwise participate in nearby programs (especially those specifically designed for people with special needs). You may also be able to access scholarships or other funds.
  • Therapies. If your child qualifies for Medicaid, he or she will also qualify for insurance-covered therapies including behavioral, cognitive, speech, occupational, and physical therapy. You will have some control over the provider, but that control is limited by the reality that a great many practitioners are now "private pay only."

Adult Services Vary from Person to Person

Children's autism services are customized, meaning that they provide a "free and appropriate education" based on the individual's particular strengths and challenges. Adult services are also customized—but in addition the type and level of support available from ADD and DVR vary radically depending based on the state in which you live and, in some cases, your physical location within the state.

How Location Impacts Level and Type of Support

Each state has a different way of administering adult services, and that goes along with different budgets, programs, and options. As a result, some states provide generously for adults with autism while others are less than generous. According to Autism Speaks, for example, Texas, Virginia, Tennessee, Ohio, and Florida are less likely than states like Arizona and New Jersey to offer top-level services for adults. All 50 states, however, do include autism as a condition that must be covered by insurers.

States also have their own perspectives on the autism spectrum. In some states, for example, the autism diagnosis is enough to make a person eligible for at least some supports. In other states, a higher IQ is enough to make an individual ineligible for most adult programs.

Some states are very good at administering specific kinds of programs and services, but do a poor job with others. For example, some offer stellar "dayhab" programs for more severely impacted adults but may do a poor job at providing job supports for individuals who are able to work in the general community.

Even within a given state, your options and supports may vary. If you live in a major city, chances are good that your adult child will have some options for day programs, residential settings, therapies, and jobs. In the countryside, such options may be few and far between.

How Needs and Diagnosis Impact Level and Type of Support

ADD and DVR services are provided based on a variety of factors that are not relevant for children under the age of 22. A few of these factors include:

  • Severity of symptoms. An individual with very severe symptoms (especially aggressive behaviors) is likely to rise to the top of the list for services and residential settings. By the same token, an individual with a high IQ and less severe symptoms may receive relatively few services and no funding at all for residential placement.
  • Family situation. In some cases, a family's economic and/or personal situation can loosen up a bit more money or services for an individual with autism. In particular, the threat of homelessness or a medical catastrophe can lead to more services.
  • Personal income. Social security benefits depend, to a large degree, on the income of the individual with disabilities. In other words, if a child with autism has a full-time job with an income above a certain level, he or she will not qualify for social security benefits (or Medicaid) despite an autism diagnosis. This is one reason why many young adults with moderately severe challenges deliberately work only part-time for relatively low salaries.

Resources

You can start the process of setting your child up for adult services when he or she is just 14 years old. Here are some steps to follow:

  • Be sure your district is following the law by working with you to create a transition plan for your child, starting at age 14. If at all possible, your child should be directly involved in this process.
  • Find out as much as you can about the agencies and programs available in your area. Make contact with them early to ask about the process of setting up adult services. You may even find that they offer programs for children under 22 to prepare them for adult life. One good way to start this process is to talk with the special education staff at your child's school district.
  • Conduct research by attending conferences or events sponsored by the Autism Society, the ARC, Easter Seals, or other disability advocacy groups. They know a great deal and can be terrific resources.
  • Tap into online resources such as the Autism Speaks Navigating Adult Services Toolkit. This is a national resource, so your personal situation will vary, but they offer some very helpful tips.
  • Ask friends who have been through the process. It is often the case that, even after extensive research, you'll miss out on some "hidden" funding, resources, or opportunities. The only way to collect that information is to root it out through personal conversations with friends, therapists, teachers, agency representatives, and others who know the system inside and out.
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