People with disabilities don’t want to live in separate places built just 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.
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. Other people get to make choices about how they live their lives. Institutions are bad for everyone.
No one should live in an institution, but some people are forced to live in institutions. There are a lot of reasons for this, but one reason is the institutional bias in the Medicaid program. In this section we will talk about what the institutional bias is and the laws that could either get rid of it, help get rid of it, or help people get into the community instead.
What the Institutional Bias Is
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 people with disabilities use Medicaid. State Medicaid programs work with providers. Providers are people or places that give 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.
Long term services and supports (LTSS) are called home and community-based services (HCBS services) when you get them in your community. Most people with disabilities want good HCBS services so we can live in our communities. But lots of people don’t get HCBS services. Other people have to wait for HCBS services for a really long time. This is because of the institutional bias.
A law called the Social Security Act created the Medicaid program. This law says that:
- People who need LTSS can get LTSS in institutions no matter what. It is written in the Social Security Act that they have a right to LTSS in institutions.
- People who want to get LTSS in the community can get those services paid for by their state’s Medicaid program. But, these services are optional. That means that Medicaid can pay for HCBS services, but it does not have to.
Most states spend some money on HCBS, but not enough to get everyone services in the community. Instead, the states make waiting lists.
On waiting lists, people have to wait until their turn comes to get HCBS services. Some people have to wait a long time before they can get HCBS services. Sometimes it can be many years before someone gets services.
This means that because services in institutions are a right and services in the community are just an option, it is easier to get LTSS in institutions than in the community. This is what the institutional bias is. It makes it much harder for us to get the help we need to live in the community.
Laws, Programs, and Policies That Change or Weaken the Institutional Bias
The institutional bias is unfair and hurts people with disabilities. Lots of lawmakers, agencies, and advocacy organizations have created laws, programs, and policies to help solve the problem.
Disability Integration Act
The Disability Integration Act (DIA) is a civil rights law that would give people who need LTSS to live in their communities new rights. It says:
- No health insurance provider (someone that pays for healthcare, like the Medicaid program) that pays for LTSS can deny someone who needs LTSS from getting LTSS in the community.
- State and U.S. government agencies (“public entities”) have to create enough affordable housing to house people with disabilities
- State and U.S. government agencies have to make sure enough service providers and people get paid enough to get services in the community for everyone who needs them
- Health insurance providers have to stop, among other things:
- using rules about who can get LTSS that deny any group of people who need it access to it in the community
- limiting services in the community by limiting how much of a service can be paid for
- using waiting lists
- refusing to pay for some services but not others
The DIA does not amend Medicaid law, and it doesn’t create more services. If the DIA was passed and enforced, though, Medicaid services would have to change in order to not discriminate. The rights in the DIA would improve our lives a lot. The Autistic Self Advocacy Network therefore supports the DIA. You can learn more about the DIA and how you can help pass it at: http://www.disabilityintegrationact.org/.
Money Follows the Person
The Money Follows the Person (MFP) program is an important Medicaid program. The MFP program gives states money to fund services in the community and move people from nursing homes and other institutions into the community. It helps states change their Medicaid rules so it is easier for people to get HCBS services. The program is called “Money Follows the Person” because it helps people with disabilities get services wherever they want to be. The funding for services “follows the person,” rather than the place where they get services.
The MFP program is really successful. Over 75,000 people have used the MFP program to move from institutions into the community. 43 States and DC use the MFP program. The law which created MFP expired in 2016 even though the program was successful. Some states can continue to get money for the MFP program until 2020. After 2020, states will not be able to pay for MFP anymore. This will be very bad for a lot of people who want to move into the community.
Congress has come up with bills that would start MFP up again, like the EMPOWER Care Act. The Autistic Self Advocacy Network supports these bills. Call your Members of Congress and tell them you support the EMPOWER Care Act and the MFP program.
Medicaid Balancing Incentive Program (BIP)
The Balancing Incentive Program (BIP) was a Medicaid program created by a healthcare bill called the Affordable Care Act (ACA). BIP was made to make it easier for people to get LTSS outside institutions. It focused on rebalancing how the state was spending LTSS money. A lot of states were spending more money on LTSS in institutions than in the community. BIP helped states change how they spent their LTSS money so it was more balanced. In 2013, for the first time ever, states overall spent more money on LTSS in the community than they did on institutions.
BIP helped to do this by giving money to state Medicaid programs. The state programs use the money to make it easier to apply for and get LTSS in the community. The states had to use the money in three ways:
- they had to create a No Wrong Door (NWD) system, which makes it easier for people with disabilities in a state to access the services they are eligible for from any agency;
- they had to create their case management so that someone’s providers do not do their case management;
- the creation of a single, easy test to figure out if someone needs services or not.
States had to spend a certain amount of money on LTSS in the community, like HCBS services, and another amount of money on programs that help more people get LTSS in the community. Eighteen states were a part of BIP. ASAN supported BIP, and we support new programs like it. We think rebalancing state LTSS spending is a good way to fight the institutional bias.
HCBS Infrastructure Act
The HCBS Infrastructure Act is a bill that has just been introduced. It would give states money for seven years. The states would have to use the money to make big changes that would make their HCBS services better. States would have 5 options for ways to make their services better, and each state would have to pick at least 3 to try. Some of the things a state could try and fix are:
- their caregiving workforce
- services that help people find and keep a job
- housing supports
- transportation for people with disabilities
- making it easier to get services
The HCBS Infrastructure Act would help states make changes to their services so that they can follow the HCBS Settings Rule. States would have to keep data on the quality of their services. They would need to show that the money helped them provide better services in the community to more people. They would need to show how they used the money to rebalance their services away from institutions.
ASAN supports this bill. To help pass the HCBS Infrastructure Act, check out our action alert HERE.
Olmstead v. L.C. Enforcement
Enforcement means that someone – like a government agency or the police – makes sure that people follow a law that has been passed. Olmstead v. L.C. is a court case that decided the way that state and local governments should follow the ADA. This is what Olmstead was about:
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 government-funded services have the right to live in the community if they can do so.
The Department of Justice (DOJ) makes sure that providers and private companies follow Olmstead. This means that the DOJ sues states who do not follow Olmstead and says they have to follow it. The DOJ has an Olmstead website which can be found at: https://www.ada.gov/olmstead/. Some DOJ lawsuits lead to the state having to do things to follow Olmstead. Georgia had to transition people with I/DD and people with mental health disabilities who wanted to be in the community into the community within five years.
Some states have an Olmstead Plan. This is a plan which explains how the state will make sure that it follows the ADA’s integration mandate. Olmstead Plans are all very different from one another. Most of them explain what the state has done and will do to integrate people with disabilities. For example, Massachusetts’ 2018 Olmstead Plan says that the state:
- works on getting employment in the community for people with disabilities
- spends money and resources on affordable housing
- tries to improve transportation in the state
ASAN supports the Olmstead integration mandate. To help protect our rights under Olmstead, you can:
- Write to DOJ and tell them about things that are happening to you or someone else in your state that violate the ADA.
- Work together with your P&A to file an Olmstead complaint, if you think you are not getting your Olmstead rights!
- Hold your state service providers and agencies accountable and work with local advocacy organizations to fight for better quality LTSS in your community.