Feature Issue on Self Direction

Applied Self-Direction is a national organization with a single mission: to advance self-direction. The organization serves as a hub to connect diverse stakeholders, track and disseminate innovative practices, and build community in a space that is all too often decentralized.

We define self-direction as a model of long-term service delivery in which individuals who need support choose how, when, and from whom their services and supports are delivered. Philosophically, our work is based on the premise that people with disabilities know their needs best, and our service delivery systems must be reformed to recognize participants as leaders and key decision-makers.

Following the pandemic, Marissa Bell began self-directing for all her services.

Applied Self-Direction’s day-to-day work involves supporting governmental agencies, providers, advocacy groups, and other stakeholders to enhance self-direction. Our for-profit organization offers consulting services, membership in a national network of providers and stakeholders, and the only national conference dedicated to self-direction. Our staff represent a variety of viewpoints and backgrounds, including former federal and state government administrators, participants who self-direct, former providers in self-direction programs, and family members of people with disabilities, among others.

One of Applied Self-Direction’s primary projects is the National Inventory of Self-Direction Programs, a research project conducted every three years in conjunction with AARP. The goal of the project is to document key information about every known self-direction program, including the populations served through the program; the number of people using the program, and its funding source(s). This work gives Applied Self-Direction a unique vantage point to assess the national landscape of self-direction and track how it changes over time.

Robert Zotynia, who self-directs his services, participates on Applied Self-Direction’s participants’ council.

Today, all 50 states and the District of Columbia offer at least one self-direction program. The majority of self-direction programs serve people with intellectual and/or developmental disabilities (IDD), older adults, and/or people with physical disabilities. Programs also serve people living with brain injury, people with behavioral health needs, and people who are technology-dependent, however. The majority of states offer options to self-direct for both adults and for children. In programs serving children, the child’s parent or guardian generally serves as the child’s representative.

Self-direction has grown significantly over the past decade, as our data from the inventory project show. Participation in self-direction programs increased by more than 40% between 2016 and 2023, with more than 1.5 million Americans now choosing this option, according to our 2023 Inventory report. Participation in self-direction grew especially quickly during the COVID-19 pandemic, with a record number of participants opting to hire family members and friends as support workers. Preliminary 2024 data suggest the trend is accelerating, with the number of people self-directing now exceeding 2 million.

Research shows that self-direction is associated with positive outcomes for participants. According to the landmark Cash & Counseling national demonstration conducted across multiple states in the 1990s and early 2000s, participants who self-direct reported significantly greater satisfaction with their lives, citing the increased choice and flexibility inherent in the model. Participants’ primary caregivers also reported feeling more satisfied with their lives. Perhaps most important for the future of self-direction was the finding that that rates of fraud and abuse were no higher in self-direction than in traditional agency services.

Despite the model’s robust evidence base, challenges remain around scaling self-direction at the national level. Medicaid remains the primary funder of self-direction programs, and the Medicaid program is administered by each state. Because each state runs their own Medicaid program, this means self-direction programs look different in every state, with widely varying rules, terminology, requirements, and providers. This highly decentralized approach has created challenges for advocates that seek to create a national network for self-direction.

One of our primary goals is to help build a national community of self-direction stakeholders. We play host to a council of self-directing participants and family members across the country to advise on key policy issues. We also offer myriad networking options, including an in-person conference, a virtual conference, private workgroups for state administrators of self-direction programs, and live training events to encourage stakeholders from diverse backgrounds to meet and form communities.

More energy and resources are still needed to scale self-direction to its full promise. Self-direction clearly works well for those who are able to access the model. A 2023 Applied Self-Direction national report that surveyed nearly 700 self-directing participants and workers found that 71% of surveyed participants reported being satisfied with self-direction. They cited that the model offered flexibility and greater freedom to structure their lives how they wanted. In addition, self-direction expands workforce capacity by offering pathways to paid caregiving for family members, friends, and others who do not necessarily consider caregiving a vocation, but can provide high-quality support.

John Underwood, participants’ council member, combines self-direction with traditional programs.

At the same time, participants surveyed cited administrative burden, inability to hire workers, and low worker pay as major challenges within self-directed services. As one participant put it, “I love getting to choose staff and take care of scheduling. However, it's really hard when you can't find people no matter how hard you look.” Three-quarters of participants reported that hiring workers was extremely difficult. More than half of worker respondents were family members, and 75% of the worker respondents reported feeling satisfied with self-direction but also expressed major concerns over low pay, lack of benefits, and lack of advancement opportunities. Some participants reported that they did not wish to hire a family member but had no other options. While such arrangements are all too often necessary, they do not offer participants the authentic choice and control for which self-direction was designed. In addition, ongoing paperwork, electronic visit verification, and other administrative requirements can be incredibly burdensome for participants and families who participate in the model. Today, self-direction requires participants and often families to invest major time and resources to enroll in the program, educate themselves about the often-complex rules and requirements, recruit and manage their own staff and budget, and deal with the staff turnover that remains an ongoing challenge. As a result, self-direction all too often remains popular among participants and families of higher socioeconomic status and is less accessible among underserved and historically marginalized communities.

A throughline across Applied Self-Direction’s work is to make the model more accessible to more people. Our end goal is simple: that anyone who needs ongoing support has the option to self-direct, whether they choose to do so or not. Examples of this work may be as broad as supporting a state as it gains federal approval to offer self-directed services to a new population for the first time. In other cases, it may mean facilitating in-person meetings between state administrators and advocates to develop recommendations to change program policies that are not working well for stakeholders. While such work rarely moves quickly, one fact remains clear: despite its challenges, self-direction is rapidly gaining momentum as both a service delivery system and a national movement.