Participants in a supported decision-making pilot program in Massachusetts. Supported decision-making ensures that people with IDD are making their own decisions in life, which is aligned with the self-determination goals of the Settings Rule.

Over the last several decades, more people with disabilities are living in the community rather than in institutions. This has led to an expansion of states’ Home and Community Based Services (HCBS) programs. A new rule was issued by the federal government in 2014 called the HCBS Settings Rule. It, for the first time, defines "community" for all Medicaid-funded HCBS programs. The Rule ensures that people receive services in HCBS settings that help them be integrated in the community. It promotes best practices developed by states, providers, and Direct Support Professionals (DSPs) over years of working with and learning from people receiving services. The Rule will enhance the quality and availability of HCBS. It also will ensure that all people receiving HCBS have full access to the benefits of community living. This includes opportunities to live, work, and receive services in integrated, community settings.

The DSP role has become much more focused on individualized services as people live in the community.

Source: Larson, S.A., Eschenbacher, H.J., Anderson, L.L., Taylor, B., Pettingell, S., Hewitt, A., Sowers, M., & Bourne, M.L. (2017). In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and trends through 2015. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration

The HCBS Settings Rule ensures that HCBS settings provide people with disabilities supports that promote:

• Access to the broader community,
• Meaningful control over daily life decisions, such as deciding what to eat and setting their own schedule,
• Personal relationships, including relationships with people without disabilities who are not paid to be in their lives and the ability to have visitors at any time,
• Choices about what services they receive and who provides them,
• Opportunities for competitive integrated employment, and
• Individualized supports.

The HCBS Settings Rule will help states meet their requirements under the Americans with Disabilities Act (ADA) and the Supreme Court’s decision in Olmstead v. L.C. These laws require that services are provided in the most integrated setting appropriate to the person’s needs. This means settings where people with disabilities have opportunities to interact with people without disabilities to the fullest extent possible.

It will take states and providers of disability services time to adjust their programs to come into compliance with these new standards. The Rule gives states until March 2022 to develop and fully implement a "State Transition Plan" (STP). It requires that the public has an opportunity to give input into these STPs. Public input is a critical opportunity for DSPs, people with disabilities and their families, providers, and advocates. Through comments, people can impact how their state will implement this new Rule in their service system. States are beginning to submit their STPs for review. A number of states have received approval for their plans.

According to the HCBS Rule, the public must have an opportunity to give input in these State Transition Plans. Public input is a critical opportunity for stakeholders – including DSPs, people with disabilities and their families, providers, and advocates.

The Role of DSPs

The HCBS Settings Rule is an important step towards ensuring that people with disabilities can participate fully in their communities, achieve greater independence, and engage in social, recreational and employment opportunities that are meaningful to them. However, the integration and inclusion envisioned by the Rule cannot be fully realized without the hard work, dedication, and leadership of DSPs.

As a DSP, you have an important role to play in your states’ implementation of the Rule.

• You have direct experience with the successes and challenges of supporting people in individualized, integrated community services. You can evaluate existing practices and service settings. You can recommend needed program changes. You can guide states’ systemic efforts to improve HCBS service models. You should share stories about ways you have found that help people experience community. When you see something that doesn’t work, share your insight into how it might be improved. Don’t underestimate the knowledge that you bring to the table.
• You can help the people you support to put individual support plans in place. You can lead efforts to implement more individualized, person-centered services. You can help people receiving supports to direct their own plans. You can do this by helping the people you support share what is important to them. Then you can support the person to achieve their desired goals. Without DSPs, many dreams won’t be realized.
• Your familiarity with the local community enables you to connect people to both formal and natural supports. You help increase people’s access to community programs and activities. You can also create opportunities for more individualized community involvement. You can serve as a bridge to meaningful community engagement.
• You have personal knowledge of the people you support. You have day-to-day involvement in their lives. This provides opportunity for promoting greater autonomy, choice, and control over everything from activities of daily living, to choosing services or providers, to the development of independent living skills. You can make sure that people receiving services know that the HCBS Settings Rule gives them rights to further these goals. This includes their right to choose their own schedule, have visitors when they want, and choose with whom (if anyone) they want to live.

Resources exist to help support people to develop skills in speaking up.

The Settings Rule provides a unique opportunity for DSPs who care about, and are invested, in the delivery of truly integrated and individualized services. The ongoing development and implementation of STPs provides a clear way to influence the direction of states’ disability service systems. For DSPs, it is a chance to use your knowledge and expertise to advance best practices. You can help identify and overcome systemic barriers. You can impact statewide system reforms. You can bring about the next generation of more integrated, inclusive community services.

The HCBS Settings Rule’s goals of choice, independence, and inclusion fit with the mission of many home and community-based provider agencies. Along with DSPs’ role in reaching these goals, it is critical that agencies’ leadership support these goals. They can do this through trainings, supervision, and the professional culture they create. Meaningful integration is made possible through the day-to-day work of DSPs. DSPs make a huge difference when they empower individuals with disabilities to be part of their communities, make their own choices, and lead more independent lives.

Self advocate and Georgia Council on Developmental Disabilities member, Evan Nodvin, presenting on his life in the community at a national disability conference.

In conclusion, the HCBS Settings Rule is an unprecedented opportunity. It gives us the chance to move disability service systems towards best practices of providing more integrated and individualized supports. These help people with disabilities live meaningful lives included in their communities. The role of DSPs in implementing this Rule, both at an individual and systems level, is critical.