Policy Research Brief, Vol. 30, No. 6

Research Issue

Self-direction allows people with intellectual and developmental disabilities (IDD) to control most aspects of their home- and community-based services. Other names that states use for self-direction include participant-directed services and consumer-directed services. If the person with IDD is not able or does not want to direct their own services, they can have a family member direct their services for them. This is also referred to as self-direction. Many people also self-direct some services while receiving other services from provider agencies.

Self-direction is different in every state. In some states, people have control over parts or all of their service budgets. They may be able to offer a higher wage to personal support workers or purchase equipment for services like augmentative and alternative communication (AAC) devices. It is important to understand the views of state IDD agency staff on self-direction services offered in their states.

Study Background

This study was conducted by the Research and Training Center on Community Living at the Institute on Community Integration, University of Minnesota. In spring through fall of 2022, project staff interviewed state IDD agency staff from 14 states to understand how self-direction for people with IDD is different in each state; how well they think self-direction works; and the effects of the COVID-19 pandemic on self-direction.

Policy Recommendations

Our policy recommendations to expand and improve self-direction are:

• Help people with administering self-direction plans. Even though states provide some help with plan administration, people need more support because self-direction is complicated.

• Provide better education on self-direction. Self-direction must be explained more clearly to people seeking services and their families. Many families do not even know self-direction is an option. This will help people understand if self-direction is appropriate for them.

• Increase person-centeredness in self-direction. For people who have someone else (like a family member) directing their services, we must make sure the person receiving services makes as many decisions as they want. An example of such a policy would be offering training to families on person-centeredness, dignity of risk, and civil rights.

• Create more opportunities for self-direction by stabilizing the direct support workforce. Many people who use self-direction services are not able to find a support worker due to the urgent workforce crisis. If there were more direct support professionals in the US, more people could self-direct.

Key Findings

Availability of self-direction has grown rapidly in recent years.

In 2015, 39 states offered self-directed services (SDS) to people with IDD

In 2022, 47 states offered self-direction to people with IDD

Map of the United States. States that offered self-direction in 2022 are shaded gold. States that did not offer self-direction in 202215 are shaded maroon. All states are gold except Arkansas, District of Columbia, Indiana, and Mississippi.

Main findings from interviews with state IDD agency staff

• Self-direction’s greatest strength is flexibility. It allows people to set their own schedules and choose their own staff.

• Hiring friends and family increases access to services, especially in areas that may not have other service options such as rural areas.

• People who self-direct have to manage many complicated details of the self-direction plan. This can be a barrier to self-direction.

• Self-direction can be difficult for state IDD agencies to describe to people seeking services and their family members because they are very different from traditional services.