In 2014, the Centers for Medicare and Medicaid Services at the Department of Health and Human Services issued the Home and Community Based Services Settings Rule. The intention of the HCBS is to require that every state ensures that services for seniors and people with disabilities living in the community, outside of institutions, meet minimum standards for integration, access to community life, choice, autonomy and other consumer protections. Originally states were given until March 17, 2019, to comply with these regulations but an extension was granted in May 2017 allowing until March 2022.
In the final rule, CMS defines home- and community-based settings by the nature and quality of individuals’ experiences and establish more outcome-oriented results. Significant aspects of the HCSB Settings Rule outlined in the “Home & Community Based Settings Fact Sheet” include ensuring that people with disabilities have access to the broader community and facilitate relationships with people without disabilities other than providers and staff, ensuring that people with disabilities have control over their daily life decisions ranging from simple daily choices to having opportunities to competitive integrated employment, choices about the services they receive and who provides them and assisting states with coming into compliance with the obligation under the Americans with Disabilities Act.
The type of environments outlined in the Settings Rule can provide more individualized and integrated services and settings which have been proven to improve health, employment and quality of life for people with disabilities. Research shows that people living in their own or family home or in very small integrated settings, with appropriate supports, were healthier, had increased opportunities to make choices related to their daily living and ranked consistently better in achieving positive quality of life outcomes. These results also show that improved health reduces state costs and allows for greater access to the community and opportunities for employment. It is hard to imagine a community or society that would not support these outcomes.
With all of the definitions included in the Settings Rule, the one term that is not thoroughly defined is “community.” One unrelated definition of community is “a group of people living in the same place or having a particular characteristic in common.” Another calls community “a feeling of fellowship with others, as a result of sharing common attitudes, interests and goals.”
We are the “community” to which the Settings Rule refers. This integration and inclusion referred to will be in our businesses, schools, churches, neighborhoods and families. It will thrive in our attitudes, our ability to see past the disability and see only ability and it will prosper in the way we teach our children to embrace differences rather than avoid or chastise them. We as the community will actually be better when we realize that there are many hidden disabilities that are not obvious through physical features but not less challenging.
The Settings Rule will dictate how people who provide services to individuals with disabilities provide their supports and conduct their business but the Settings Rule cannot dictate, regulate or control how we as a “community” will respond.
The HCBS Settings Rule is a major move toward integration and inclusion for people with disabilities. We as a “community” shouldn’t wait until 2020 to establish our role. We can start now by learning about not only the challenges that people with all disabilities experience but also about the value that they bring.
I saw a quote by Verna Myers that said, “Diversity is being asked to the party. Inclusion is being asked to dance.” I hope that we can start to find ways to not just accept that people with disabilities are part of our community, but also take the time to learn how to invite them to “dance.”