Services for Autistic Adults

When autistic people 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 autistic adults and their families can and do find support.

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 school districts must provide children with free and appropriate education, state and federal governments may or may not determine that an autistic child is eligible for specific services or funding. What's more, while school districts must find a way to serve autistic children 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 an autistic person. In school, a child may have had access to classes, therapies, and programs designed with the child's specific needs in mind. As an adult, they are more likely to be lumped in with other people with developmental disorders. This can be challenging, as autistic adults 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 Intellectual and Developmental Disabilities (AIDD), which focuses on respite care, residential support, transportation, transition planning, and employment
• Division of Vocational Rehabilitation (DVR or VR), 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 autistic adults; while the services offered 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. 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 AIDD, funding may become available through Social Security programs for individuals with disabilities or people who are low-income.

Group and institutional living varies wildly in terms of quality and appropriateness for autistic adults; it is very important to not only check out the setting initially but also to maintain careful oversight.

Day Programs

Depending on the needs 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 very severe disabilities or they may 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.

Work Programs and Career Support

If the autistic adult cannot work in a competitive job, there is a good chance that funding will support an organization that specifically employs people with disabilities.

If the autistic adult can compete for and handle a competitive job, they may need help preparing for and getting a job. Once in a work setting, DVR funding may pay for job coaching to help the autistic adult learn the ropes and manage any challenges that come up. In the long run, DVR expects its clients to handle work on their own eventually.

Recreational and Community Programs

In some cases, funding will pay for autistic adults 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 disabilities). Families may also be able to access scholarships or other funds.

Therapies

If the autistic adult qualifies for Medicaid, they will also qualify for insurance-covered therapies including behavioral, cognitive, speech, occupational, and physical therapy. Families 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 AIDD and DVR vary radically depending based on the state in which someone lives in and, in some cases, 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 autistic adults while others are less than generous. 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 home and community-based services.

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 autistic adults with developmental or intellectual disabilities but may do a poor job at providing job support.

Even within a given state, options and supports may vary. If in a major city, chances are good that an autistic adult 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

AIDD 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:

• Intensity of needs. An individual with intellectual and developmental disabilities is likely to rise to the top of the list for services and residential settings. By the same token, an individual who is able to function better in a neurotypical society 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 call for more money or services provided to an autistic member of said family. In particular, the threat of homelessness or a medical catastrophe can make a person eligible for specific or more services.
• Personal income. Social security benefits depend, to a large degree, on the income of the individual with disabilities. In other words, if an autistic adult has a full-time job with an income above a certain level, they will not qualify for social security benefits (or Medicaid) despite an autism diagnosis. This is one reason why many young autistic adults who can function moderately well in neurotypical society deliberately work part-time to qualify for the services and health insurance they need.

Resources

You can start the process of setting a child up for adult services when they are just 14 years old. Here are some steps to follow:

• Be sure the district is following the law by working with you to create a transition plan for the child, starting at age 14. If at all possible, the 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 or disability education staff at the 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 Autistic Self Advocacy Network's Roadmap to Transition: A Handbook for Autistic Youth Transitioning to Adulthood. 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, families 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.