Accessing Developmental Disabilities Services for Adults

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What are the community supports and services available to adults who have autism and other developmental disabilities?

Many young adults with developmental disabilities want what most young adults want: economic stability, to belong to a community, pursue their interest, get their own place and do meaningful work. Levels of supports, benefits and services can vary from state to state. Families and individuals need to know how to access what is needed.

  • Each state has developmental disabilities services provided to support adults to live in their home communities. These services often fall under a local community mental health agency for management. The services are specific to the needs of individuals and should include individualized service planning, case management, help with job hunting, social and recreational opportunities and finding a place to live. These services are paid in large part by Medicaid and therefore the person may have to be Medicaid eligible as well as meet the local definition of developmental disability to receive services. Best practice is based on principles of person centered planning and self determination where the person is in charge of identifying their dreams and how he or she wants to get there.
  • It is important that everyone have an economic base to cover basic needs. If the individual is unable to earn enough money to pay for the basics then disability benefits such as supplemental security income, social security disability, Medicaid and Medicare are needed. Because social security disability benefits are often low, individuals need to subsidize their income with other financial programs such as food stamps and housing assistance. See other sections of the website for information on these programs and how to apply.
  • We all need people in our lives to support us emotionally, socially, and practically. Most of us look to family, friends, and different community organizations that we affiliate depending on our talents and interests. For persons with autism and other developmental disabilities, they may need help from others to assist them in making these connections. Informal supports are crucial to well being and being connected to community.

How do I find the local developmental disabilities services in my area?

Most states have a developmental disabilities department or these services come under the broader heading of mental health or human services. To find your state and local agencies that provide these services go to the website of the National Association of State Directors of Developmental Disabilities Services.

Advocacy tips on obtaining developmental disability services:

  1. Find out what your state provides in terms of home and community based services. If your state is still reliant on institutional care of persons with developmental disabilities, organize and act to change things. There are many Medicaid waivers that support home and community based services instead of the institutional model but your state has to apply for them.
  2. Understand the policies and procedures that impact eligibility in your state and locale.
  3. Write a summary letter with back up information such as school records, psychological evaluations, and statements from people who know the person explaining why you think your son or daughter is eligible for services.
  4. Get to know your appeal rights and use them. Medicaid funded services have specific appeal rights if you are denied services or your level of service is changed. Your local agency must inform you of their appeal processes. Find a community advocate or ally to help you through the process. The Arcs and Protection and Advocacy can assist you with understanding the appeal processes and your rights to services.

Where do I go for more information?

For your local developmental disabilities services agency:

For a listing of the local Arc chapters in your state:

For your local Protection and Advocacy Agency:

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