The movement towards self-direction in essential programs for independent living is an important advancement for the civil rights of people with disabilities. Not only should disabled people have the right to live in their communities, they should also have the ability to determine how they receive care and support. Self-direction is a shift in care provision that is starting to become better integrated with a variety of health programs. Programs like HCBS under Medicaid have been leading the way in bringing self-determination into the space of care. As we look towards major spending cuts to Medicaid, this policy blog covers how they will affect the movement for dignity and autonomy for people with disabilities.
Self-direction in care has been evolving since it first emerged with Medicaid in the Cash and Counseling demonstration project in the 1990s . This national experiment in public policy pushed for long-term care recipients to have choice over how they lived their lives day to day. Instead of receiving agency-directed services, participants received a set cash budget and counseling that they could use to purchase supports for independent living. It paved the way for further self-direction initiatives in home care. Through Medicaid as the primary payer, recipients of personal support services like HCBS pioneered self-direction of services. Incrementally, this option has become available in mental health and recovery service planning as well. Programs that offer self-direction as an option include the Section 1915 HCBS Waiver, State Plan Benefit, Self-Directed Personal Assistance State Plan Option, Community First Choice State Plan Option, and the Section 1115 Demonstration. Under this format, participants, or sometimes a representative, will hold decision-making authority to manage their provision of care.
As part of the self-direction process, all individuals directing their own care must participate in a planning process with a person’s broader care team. This team can include supporting family members, case managers, and physicians. The team works with the person self-directing their services to identify the specific resources and related budget needed for a person to live in the community independently. As part of this process, a person can also take leadership over the hiring, firing, and training of their support staff. It is important that the person self-directing care is aware of their responsibilities to CMS to properly administer their own services. Typically, a self-directed care plan should be revised annually through Medicaid. The options to participate in self-directed care depends on your state.
Importantly, for people who need support when opting to participate in self-direction, they can engage a representative who assists them in supported decision-making (SDM). Unlike legal guardianship where a person loses their ability to participate in the decision-making process, SDM is a model where the individual with a disability retains their autonomy and agency to make decisions affecting their care. Increasingly, SDM is becoming recognized as a preferred alternative to guardianship around the country. They are given the counseling, mentorship, and even communication assistance needed to fully engage with that process. A representative can help someone explore and understand their options, and support with communicating their preferences for care. SDM can be essential for people with cognitive disabilities in particular to participate in self-direction programs. Some may still choose to forego the self-direction option when they understand the responsibilities of the program. SDM legislation varies depending on the state.
As of 2023, self-direction in care has been rolled out to varying degrees across the United States. There are over 1.5 million people self-directing their long-term care according to MACPAC. Self-direction is primarily implemented for people with physical disabilities or I/DD, older adults, and people with HIV/AIDS. Over half of states offer self-direction for people with TBI, and children with physical disabilities, TBI, or I/DD. Only 14 percent of states offer self-direction programs for adults or children with mental health challenges (SMI/ SEM).
Self-direction can allow for participants to control various aspects of their care process. With what’s called Employer Authority, a participant has the responsibility to hire, train, and fire the workers providing direct care. Participants can also have Budget Authority to manage the purchasing and selection of services. These options allow the participant to determine the rate of pay for their providers, meaning that they can pay higher rates to those with more experience, or who are willing to take more difficult shifts. These powers come with various responsibilities that the participant must regularly fulfill to properly document that services are appropriate and within their budget. In conversation with designated “information and assistance” entity, the participant determines what they can spend their budget on. Then, they are responsible for regularly tracking and reporting how their budget is being spent, ensuring that time cards for staff care providers are current and accurate. Ongoing support and monitoring is provided by the state to make sure that the participant is able to hire the care team they need, and that they are using their budget adequately. Some self-directed HCBS programs allow for both employer and budget authority by participants, but not all.
Especially for people with intellectual and developmental disabilities, studies have shown that self-direction is linked to greater satisfaction and better health outcomes. For those with strong natural support networks, self-direction may be easier to implement. Some people might need additional supports to engage fully in the program, including those with health challenges like dementia, or those with language or technology barriers. People experiencing homelessness, or living in rural areas are also more likely to need additional supports to participate successfully. When done well, self-direction can be used to guide decisions in home care, supported employment, technology and assistance modifications. It can also help a person accessing respite care or peer support services. In some states, participants have the option to hire family caregivers as a member of their support team.
Measuring the Quality of Human-Centered Care
National Core Indicators (NCI) have been used to begin studying trends in self-directed HCBS. Two NCI surveys are in use to collect data from people receiving services from state developmental disabilities (DD) and state aging and disability (AD) service systems. These surveys ask about the experiences of the person self-directing and whether they’re satisfied with the choices and process of self-directing. The Personal Outcome Measures Factors and Indicators from the Council on Quality and Leadership (CQL) offer another survey for gauging the satisfaction of people participating in self-direction. Through 21 key indicators, it asks about how well a person is engaging with their community and relationships, moving toward goals, and benefiting from their ability to make independent decisions.
Researchers have called for even deeper data collection capacity to study the nuances of these programs. These indicators are unable to correlate whether a person self-directing is using employer or budget authority, or which specific services they’re self-directing. Right now, there is no clear way to track the uptake of spending or enrollment in Medicaid self-direction programs. States are also responsible for monitoring the quality of care from family caregivers in particular. CMS has called for states to better monitor workforce trainings and certification of providers, as well as a broader registry of eligible care workers. Quality measures are now being piloted to determine program quality for specific self-direction initiatives in mental health. The Mental Health Self-Direction Scale (MSHD) is emerging as a measure of outcomes for mental health care consumers directing their care. Studies have shown that mental health consumers who self-direct their care have more housing independence, and better employment outcomes than those without.
Alongside the work of improving self-direction in supports, is a parallel effort to ensure adequate funding for staffing the care workforce. Resourcing a high-quality mental health and care workforce is essential to ensuring that self-direction and management is possible. A model of interdependent living would ensure adequate wages for the millions of people who support people with disabilities nationwide.
The movement toward self-direction in care depends on the availability of a range of treatment options and supports to ensure meaningful choice for recipients. For people seeking mental health services, autonomy is a critical factor for supporting well-being, and options like peer support are an important alternative for care. With funding for critical programs like Medicaid at risk as the primary payer for HCBS, the availability of essential resources that make self-direction possible is also under threat. Federal Medicaid cuts will pressure states to make difficult choices in how they manage their programs starting in 2026. Based on past precedent, we can expect states to cut Medicaid eligibility, benefits, and provider payments to balance their budget, and often HCBS is cut first.
Our last post in this series focused on the importance of addressing health-related social needs with good health policy. Follow our Policy Updates and the Disability & Public Health Newsletter to stay on top of our current advocacy on these issues.
Additional Resources
Information for People Self-Directing Services:
- Self-Directed Home and Community-Based Services: Understanding Your Role.
- Applied Self-Direction
- Health & Wellness: Tools for Self-Management – The Council on Quality & Leadership
Information for Advocates:
- MACPAC – Self-Direction for Home- and Community-Based Services. Report to Congress on Medicaid and CHIP.
- Mental Health Self Direction
- National Resource Center for Supported Decision-Making
Articles
Croft, B., İsvan, N., Parish, S. L., & Mahoney, K. J. (2018). Housing and Employment Outcomes for Mental Health Self-Direction Participants. Psychiatric Services, 69(7), 819–825. https://doi.org/10.1176/appi.ps.201700057
Friedman, C. (2017), The personal outcome measures. Disability and Health Journal, 11(3), 351-358. https://doi.org/10.1016/j.dhjo.2017.12.003
Friedman, C. (2025), Self-Direction in Medicaid Home- and Community-Based Services. Journal of Policy and Practice in Intellectual Disabilities, 22: e12531. https://doi.org/10.1111/jppi.12531
“History Repeats? Faced With Medicaid Cuts, States Reduced Support for Older Adults and Disabled People”, Health Affairs Forefront, April 16, 2025. https://www.healthaffairs.org/content/forefront/history-repeats-faced-medicaid-cuts-states-reduced-support-older-adults-and-disabled
Kemper P. (2007). Commentary: Social experimentation at its best: the Cash and Counseling demonstration and its implications. Health services research, 42(1 Pt 2), 577–586. https://doi.org/10.1111/j.1475-6773.2006.00696.x