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.
Long-term services and supports (LTSS) funded by Medicaid – a government program – help people with disabilities do everyday chores and tasks. Medicaid is one of the only programs that helps pay for LTSS.
There are different kinds of LTSS providers. Some people get LTSS in institutions. Institutions are places where lots of people live. In these places, people with disabilities are isolated from people without disabilities. Institutions are bad for us.
Other people get LTSS in their community. Home and community-based services (HCBS services) are LTSS when they are given to us in the community. ASAN wants people to have good-quality HCBS services so we can all live in the community.
There used to be a problem with HCBS services. 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
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!
Medicaid created the HCBS Settings Rule to stop this from happening. In this section we will talk about what the HCBS Settings Rule does and how to fight for it.
What the HCBS Settings Rule Is and What it Does
The HCBS Settings Rule is a regulation. Regulations are rules government agencies make. Regulations tell people how the government wants them to follow laws. The HCBS Settings Rule tells providers how to follow a law known as the Social Security Act. The Social Security Act created Medicaid. Medicaid funds HCBS services.
The HCBS Settings Rule says what services are HCBS. It also says what services are not HCBS. It does this in two different ways. It gives people rights, and it gives providers rules. For more information on the HCBS Settings Rule and what it does, read ASAN’s toolkit This Rule Rules: The HCBS Settings Rule and You.
Your Rights Under the HCBS Settings Rule
The HCBS Settings Rule gives people getting HCBS services rights.
If you get HCBS services, you have:
- The right to community living. That means you have the right to live in the community, go into the community, get services in the community, and choose how to spend your time. Providers – in this case agencies who give you LTSS – can’t decide when you go out into the community or stop you.
- The right to choose where to live. The Rule says that you need to have choices about where to live. You can’t only be given one choice. You can’t get forced to have a roommate or live in a group home. You can’t be forced to choose only places to live that are just for people with disabilities.
- The right to choose where you get services. The Rule says you can’t be forced to get services in one specific place. You choose where you get your services. You also have the right to choose who gives you services.
- The right to choose what kind of services you get. You have a lot of choices about your services.You can make these choices by using a person-centered plan. This is a paper that says what kind of services you get. The HCBS Settings Rule says you have a right to get a person-centered plan. The person-centered plan has to be made at a meeting with you in it, where you are in charge. You have a right to a case manager that will help you make the plan. The case manager cannot be the same person or agency who gives you services.
- The right to respect and privacy. Your service provider shouldn’t be able to barge into your affairs whenever they want. They must respect you.
- The right to be free of restraint and seclusion. Restraint is when someone stops someone else from moving. Seclusion is when someone locks someone else in an empty room. They are both very dangerous for people with disabilities! The HCBS Settings Rule says we have the right to be free from restraint and seclusion.
Rules Providers Have to Follow Under the HCBS Settings Rule
Sometimes, an HCBS services provider owns the place where you get HCBS services. For example, if you live in a group home, your HCBS services provider owns the group home. This is called a provider-owned setting.
CMS looked at provider-owned settings when they made the HCBS Settings Rule. CMS found out that provider-owned settings usually tried to control us a lot. Some parts of the HCBS Settings Rule only apply to provider-owned settings. If a provider-owned setting does not follow these rules, they cannot get paid for giving people HCBS services anymore. These rules are:
- The HCBS Settings Rule says that in provider-owned settings, you are like a tenant. You get all the same rights as any other tenant. Your HCBS provider is like your landlord. They can’t do unfair things to you.
- You have to be able to lock the door to your room. You have to be able to decorate where you live any way you want.
- The house has to be wheelchair accessible.
- You have to have food at any time.
- You have to have access to visitors of any kind at any time.
Threats to the HCBS Settings Rule
The HCBS Settings Rule is a very important rule. It protects our right to live in the community and the quality of our services. Some groups of people want to eliminate parts of the HCBS Settings Rule or change parts of the HCBS Settings Rule. All of these changes would be bad for people with disabilities.
- Some people want to make it so that the HCBS Settings Rule is not as strict about which places are considered “home and community-based.” They say that by preventing money meant for HCBS services from being used on institutions and places like institutions, the HCBS Settings Rule restricts choice. This is not true. The HCBS Settings Rule is all about choice. If someone chooses to live in an institution, they can still do that–the institution just needs to use Medicaid money that isn’t for HCBS.
- Some people want the government to give them more time to change their policies so that they can get HCBS money. They say there has not been enough time. This is not true. It has already been six years since the HCBS Settings Rule was made. The government also delayed some parts of the HCBS Settings Rule to 2022. People with disabilities deserve to have our rights protected in the community now.
- Some providers want to not follow important parts of the HCBS Settings Rule and still get HCBS money. This would be bad. If providers could decide to not follow the HCBS Settings Rule all the time, the HCBS Settings Rule would not mean anything anymore. It would just be an idea and not a rule.
How to Advocate for the HCBS Settings Rule
You can help protect the strength of the HCBS Settings Rule and your right to live in the community by:
- talking to your state’s developmental disability (DD) agency. State DD agencies help run the Medicaid services for people with I/DD in a state. Tell them why the HCBS Settings Rule is important to you. Ask them how they will make sure your state follows the HCBS Settings Rule.
- working with an advocacy organization for people with disabilities that focuses on the Rule a lot, like the Autistic Self Advocacy Network, The Arc of the United States, or the National Disability Rights Network (NDRN).
- looking into your state’s HCBS transition plan. Every state has an HCBS transition plan. The plan has to explain how the state will change its HCBS services policies, providers, and government agencies so that they follow the HCBS Settings Rule. You can let your state know what you think about the plan. Your state could put your thoughts into their plan!
- working with your Protection and Advocacy (P&A) agency if you think your state is not giving you the rights you have under the HCBS Settings Rule already. P&As help people with disabilities fight for our rights. They make sure states follow disability laws. There is a P&A in every state. You can find your P&A by going to https://www.ndrn.org/about/ndrn-member-agencies/.