The Final Home and Community-Based Services waiver (HCBS) was issued in January 2014. States currently have until March 2022 to be fully compliant with this rule. VOR and Together for Choice are two organizations that have been rallying for the scaling back of or altogether eliminating the HCBS Settings Rule in the name of “choice.”
The HCBS Settings Rule is an opportunity to support states as they modernize their disability service systems. The rule can assist states to expand their capacity for more individualized and integrated services and settings, which have been proven to improve health, employment, and quality of life outcomes for people with disabilities, and to transition away from large, costly state facility-based services, and settings that research has shown can harm the health and wellbeing of people with disabilities.
Significant aspects of the HCBS Settings Rule include:
- Ensuring that HCBS settings provide people with disabilities access to the broader community and facilitate relationships with people without disabilities — in other words, not people who provide paid supports.
- Ensuring that HCBS settings provide people with disabilities control over daily life decisions like what to eat, when to go to sleep, and who can visit; and includes opportunities for competitive integrated employment and choices about what services they receive and who provides them.
- Assisting states with becoming compliant with the Americans with Disabilities Act and the Supreme Court’s decision in Olmstead v. L.C. to provide services in the most integrated setting.
Additional information about HCBS can be found here, here, and here.
VOR and Together for Choice claim that HCBS reduces individual and family choice, and lists the following “problems” as evidence that HCBS needs to be watered down or overturned:
- People with disabilities have diverse needs, interests, and challenges. Some do well living in small homes that meet CMS requirements. Others do not. Many people have tried settings that meet CMS requirements, but have found them to be isolating and harmful.
- People with disabilities and their families are best positioned to decide which setting best meets their needs. The federal government should not be in a position to veto these personal, individualized decisions.
- Before the HCBS Settings Rule, people with disabilities and/or their families could choose a range of settings in the community — such as the person’s home, an apartment, a group home, an apartment complex designed for people with disabilities, a farmstead community, or a campus setting. Under HCBS, many people will no longer be eligible for Medicaid waiver funding unless they move out of the home they have chosen. For example, people living in any setting designed to serve people with disabilities will no longer be eligible for services, unless the federal government determines that the setting meets the federal “heightened scrutiny” standard.
Together for Choice has hired a legal team and they have paid lobbyists to aid their mission. TASH strongly encourages you to contact the House Committee on Energy and Commerce, as well as your House Representatives and Senators with examples of people with disabilities — especially people with the most significant disabilities — thriving in their communities to help them better understand the benefits of HCBS, and that the rule works.