Feature Issue on Self Direction

Clear-language summary

The number of people with intellectual and/or developmental disabilities (IDD) who self-direct their support services has grown over time. A 2022-23 survey from The National Core Indicators asked 24,748 people from 33 states about the state services they receive. Of those, 17% were self-directing their services. There was a wide variety among states, ranging from about 1% to 67%. Among people self-directing, 58% were white, 17% were Hispanic/Latino, and 16% were Black. The average age was 40. People who have guardians or who live at home with family members had higher rates of self-direction. The article suggests creating training for case managers about the best ways to introduce and support self-direction. The article also suggests creating plain-language resources that explain how self-direction works and ways to make sure people with IDD have enough support to be successful.

Self-direction has grown as an option for people with intellectual and/or developmental disabilities (IDD) in state service systems. Following advocacy efforts and successful demonstration projects in the 1980s and 1990s, the Affordable Care Act required the development of a more concrete emphasis on self-direction across the Department of Health and Human Services. The 2024 Centers for Medicare and Medicaid Services Access Rule emphasizes the importance of giving people with IDD the opportunity to self-direct.

It should be noted that unlike Australia, Germany, New Zealand, and some other countries, self-direction in the United States was not implemented in a standardized fashion. Consequently, both the utilization and content of self-direction programs varies by state and even by locality.

The data for this article were collected during the 2022-2023 NCI In-Person Survey (IPS) cycle. During that cycle, 33 states were represented and 24,728 adults receiving state services were interviewed. The average age was 40 years; 58% were white, 16% Black, and 17% were Hispanic/Latino. In the sample, 17% of individuals were self-directing, but the range of people self-directing varied significantly by state, from fewer than 1% to 67%.

Characteristics of People Self-Directing

Of those self-directing, 62% had budget authority and used a fiscal intermediary, 27% used the agency with choice option where the individual selects the staff, and a provider agency does payroll and other support function. Only 11% managed the staff and payroll without a fiscal intermediary.

Data on self-direction show significantly higher rates of self-direction among the following groups:

• People who are 35 years old or younger
• People who are white
• People who have guardians
• People who live with family or in their own home
• People who live in rural communities
• People with developmental but not intellectual disabilities
• People with Autism Spectrum Disorder and Down syndrome

Regarding who makes decisions about what supports are provided, 15% of self-directing participants said that they mostly make decisions, 40% said that they have input into the decisions, another 40% said that family or friend make decisions, and 5% said that the case manager makes the decisions. Overall, 84% of respondents said that they have the amount of control over their supports that they want.

A higher percentage of people who self-direct have paid community jobs, compared with those who do not self-direct. Those who self-direct are more likely to choose their roommates and their staff.

Trends Over Time

The virtue of self-direction as a more flexible and agile support option became apparent during the COVID-19 pandemic, when many traditional day and other programs were forced to close. Consequently, self-direction expanded across the country. To support expanded self-direction, states created a temporary emergency option via HCBS waiver Appendix K to allow legally responsible individuals, such a spouses and parents of minor children, to serve as paid caregivers. Although people with IDD who are self-directing represent a small slice of the total number of people receiving HCBS services, the number of people with IDD who were self-directing did go up during the pandemic.

Why Aren’t More People Self-Directing?

Several studies have documented some of the reasons why only less than one in five people with IDD receiving HCBS waiver services and supports are self-directing. My colleagues and I discussed these in a 2021 article in the Journal of Integrated Care, and in a book, Self-Direction: A Revolution in Human Services. They are also outlined in a 2018 article in the Journal of Disability Policy Studies (DOI: 10.1177/10442073187900061).

Buy-In from Case Managers

It has become clear that well-trained and engaged case managers are key to the success of self-direction. Though federal guidance states that all waiver recipients should be offered the opportunity to self-direct, unless case managers have bought in to self-direction, they may downplay the advantages of self-direction or fail to mention the option at all. Other case managers may have misconceptions about self-direction and may steer participants away from the option because of fear that the participants may be exploited.

Complexity

Case managers and people self-directing alike note that self-direction in most states is complicated. From developing the budget, to understanding the service and support menu to communicating with the fiscal intermediary, there are more steps and paperwork involved than in being enrolled in a residential or day program. When respondents to the 2022-2023 IPS who were self-directing were asked whether they needed help with parts of self-direction, 30% said they could use more information about what services and supports they can purchase, and 15% said they could use help in interpreting the information they get from the fiscal intermediary. While family members and participants may encounter a complex and confusing process when they enroll in self-direction, many eventually learn how to negotiate the program. In subsequent surveys, it would be important to know how long they have been self-directing.

At an international symposium in 2018 on advances in self-direction, self-advocates described their experiences as follows:

• “Getting all the paperwork set up” is difficult.
• “Sometimes agencies try and talk you out of self-directing.”
• “I was at first at very confused. I did not really understand. I had someone help me with that for a while. Now I am pretty much doing it.”
• “The process to hire people [was hard]. I needed help at first but mostly I do it myself now.”

Staffing Issues

Labor shortages have affected conventional HCBS services and people who are self-directing. Changes made during the pandemic that allowed expanded payment of family members in many states have expanded the pool of staff available to people self-directing, but some participants still struggle. They also express some difficulty managing staff. Among respondents to the NCI IPS in 2022-2023 who were self-directing, 23% said they wanted help finding staff, 10% said they could use assistance in training staff, and 9% said could use help getting staff paid and setting up staff schedules. Again, future surveys should note how long respondents have been self-directing.

Equity Issues

The NCI IPS data from 2020-2023 indicate people from historically marginalized racial and ethnic groups are less likely to self-direct their services and supports than white respondents.

These disparities suggest that there may be cultural issues at work or biases among case managers regarding who can successfully self-direct.

Moving Forward to Expand Access to Self-Direction

The data point to several recommendations for expanding self-direction:

• Develop training for service coordinators/case managers regarding how to introduce and support self-direction
• Develop plain-language resources about the mechanics of self-direction as well as the services and support they can direct
• Ensure that people who are self-directing have the support they need to manage their budgets and their supports (e.g., support brokers, independent facilitators, etc.)
• Monitor whether access to self-direction is equitable for all people with disabilities and older adults using long-term services and supports.
• Conduct outreach to older adults and people with disabilities to educate them regarding the benefits of self-direction
• Explore deploying peer mentors to assist individuals contemplating self-direction

To enhance the implementation of self-direction, it will be important to explore those parts of existing state practices that should be improved. To assist with that project, the National Center for the Advancement of Person-Centered Practices and Systems developed a resource, A Guide for Developing Strategic Objectives for Self-Direction , which offers a road map laying out the key drivers of a robust self-direction option within public programs. It includes a series of decision points beginning with the selection of overarching goal(s) to pursue, aspects of the goal to tackle, and action steps to pursue. The key drivers are:

• Disseminate information regarding self-direction, its benefits and how it works.
• Develop self-direction policies and procedures that are equitable, transparent, flexible, and easily understood and implemented.
• Enhance infrastructure to support self-direction.
• Recruit and train Direct Support Professionals, support brokers, and peer mentors to support self-direction.

A Key to Empowerment

As a field, we need to think about whether self-direction is a boutique program option available to a limited number of participants or a comprehensive change in the way that we think about the delivery of HCBS services. Self-direction can be the key to empowering people with IDD and can lead to real person-centered support. But this will happen only if states invest the resources and develop the infrastructure necessary to realize the potential of self-direction to reform the traditional long-term care system.