People with disabilities don’t want to live in separate places built for us. We want to live with everyone else!
Community living means living in the same places as people without disabilities. A community can be a neighborhood, town, or city. It can be any place where disabled and non-disabled people live together.
Community living also means getting to make our own choices about our lives. If we are living in the community, we can choose where we work, who we hang out with, and how we live. Community living is very important for people with disabilities because it means we have dignity, autonomy, and the opportunity to make choices – just like everyone else.
Some disabled people don’t live in their communities. They live in institutions instead.
Institutions are places where a lot of disabled people live. People in institutions usually did not decide to live there. They were put there by someone else.
Institutions are not run by the people living there. Institutions are run by the people who work there.
People living in institutions usually can’t leave when they want to. They usually can’t spend their free time how they want to. Other people get to make choices about how they live their lives. Institutions are bad for everyone. Nobody wants or needs to live in an institution!
The Autistic Self Advocacy Network is an advocacy organization that fights for the rights of autistic people. We think community living is a human right for everyone. It does not matter what disability you have or what support needs you have.
We created this page and its key issue pages to tell you what you need to know to understand what community living is and the laws, regulations, and policies that help us get it. Each key issue page covers an important subject related to community living that disability rights advocates need your help with.
The Americans with Disabilities Act (ADA) is a disability rights law that was passed in 1990. The ADA does lots of things. Part of the ADA – Title II – says that state and local governments can’t discriminate against people with disabilities. The Supreme Court has said that if a state or local government agency forces someone into an institution when they could live in the community, it is discrimination. One of the ways a state or local government agency could force someone into an institution is by only paying for them to get services in an institution.
The Social Security Act is a law that created government programs that help pay for healthcare. These programs mostly help people who do not have much money. These programs keep many people with disabilities alive. Many of us need healthcare and do not have much money.
One of the programs the Social Security Act created is Medicaid. Medicaid is a program in the United States that helps people pay for healthcare. Every state in the United States has a Medicaid program. Lots of disabled people use Medicaid. Medicaid programs work with providers. Providers are people or places that give people health care. Some types of providers are doctors or hospitals.
Medicaid pays for services called long-term services and supports (LTSS). LTSS are services that help disabled people live our everyday lives, like help getting out of bed or bathing, a job coach, or direct support workers. Medicaid is one of the only programs, private or public, that pays for LTSS.
This is important because Medicaid has an institutional bias. The institutional bias happens because part of the Social Security Act says that Medicaid has to pay for services in institutions, but doesn’t have to pay for services in the community. This makes it harder to get LTSS in the community. For more information on the institutional bias and how you can stop it, read the page “The Institutional Bias: What It Is, Why It Is Bad, and the Laws, Programs, and Policies Which Would Change It.”
Regulations are rules government agencies make. The following are a few important regulations that relate to community living:
The Home and Community-Based Services Settings rule (HCBS Settings Rule) is a very important regulation. It controls HCBS services that are funded by Medicaid. Long term services and supports (LTSS) are called HCBS when you get them in your community. Most people with disabilities want good HCBS so we can live in our communities.
The HCBS Settings Rule was made because institutions kept getting money meant for HCBS services by saying they weren’t really an institution. They would say they were giving people HCBS instead. They would give reasons like:
- They let people with disabilities choose what to eat for breakfast
- They let people with disabilities live in a house instead of a hospital building
- They let people with disabilities go out to the movies sometimes
But these places still took away our freedom. They still kept us away from our community. They were still institutions. But they still got money meant for HCBS. This wasn’t fair!
The HCBS Settings Rule says what services are HCBS. It also says what services are not HCBS. It says people getting HCBS services the right to:
- Choose where to live
- Choose where you get services
- Decide what kind of services you get
For more information on what the HCBS Settings Rule does, read “The Home and Community Based Settings Rule (HCBS Settings Rule): What It Is, What It Protects, And How to Advocate for It.”
Olmstead v. L.C. (1999)
In 1999, two women living in an institution went to the Supreme Court. The Supreme Court has the final say on how laws work. The women were named Lois Curtis and Elaine Wilson. Both women got money from their government that helped pay for their LTSS.
The women said that they could not live in the community because their government only paid for their LTSS in institutions. They said that they had the right to live in the community and not in an institution. The Supreme Court said that the women were right. This was called the Olmstead Decision.
The Olmstead Decision says that if a government only pays for someone to get services in institutions and they can live in the community, it violates Title II of the ADA. This means that people getting state or local government-funded services have the right to live in the community if they can do so. This is called the ADA’s integration mandate.
The United States Department of Justice (DOJ) has helped make the Olmstead Decision matter by giving people information and helping in lawsuits against providers that violate the ADA. You can find more resources on Olmstead on the DOJ’s Olmstead website.
For more information on Olmstead, you can also read our Olmstead enforcement section in “The Institutional Bias: What It Is, Why It Is Bad, and the Laws, Programs, and Policies Which Would Change It.”
ASAN Toolkits and Resources on Community Living
- Community Living Summit (May 3rd and 4th, 2018) Resources
- Accessing Home and Community-Based Services: A Guide for Self Advocates
- Keeping The Promise: Self Advocates Defining the Meaning of Community Living
- ASAN Toolkit on Improving Home and Community-Based Services (HCBS)
- Getting and Advocating for Community-Based Housing
ASAN Position Statements and Work on Community Living
- ASAN to Nevada: Betty’s Village is Not Community
- Segregated Farmsteads in Arizona Aren’t “Community-Based”
- Coalition Statement On Updated HCBS Guidance
- Q&A: HCBS “Heightened Scrutiny” Regulation
- ASAN Testimony to Delaware Legislature