New Analysis: Number of People Who Self-Direct Supports and Services

As shared by the Human Services Report Institute (HSRI):

What can states learn from NCI results about the numbers of people who self-direct their services?

In the 2016-2017 National Core Indicators™ Adult Consumer Survey (ACS), 11% of the respondents reported that they had chosen a self-directed supports option.  Among states participating in the 2016-17 ACS, the proportion of respondents using the self-directed option ranged from 0% to over 50%. 

Why does it matter?  Self-direction is the embodiment of person-centered planning and practice. By self-directing their supports, people with intellectual and developmental disabilities (I/DD) have the opportunity to exercise more control over the services and supports they need.  Often, self-direction includes the option to hire staff, to schedule and provide feedback to staff, and to manage a budget for services, including the distribution of how many units of service are used, and/or the amount paid for a specific unit of service.  States have had the option to offer self-direction to individuals receiving Home and Community Based Services (HCBS) since the 1990s.  When compared to people who don’t self-direct their supports, individuals who self-direct are more likely to make choices in their lives, have friends, enjoy privacy, have a job, and participate in their communities.  Evaluations of the landmark Cash and Counseling program showed that participants were more satisfied with their services and used their funds in a more cost-effective manner (Brown, et al, 2007). 

Questions to ask:  What percentage of service recipients in your state opt for self-direction and how has this changed in recent years? What formal Medicaid authority does your state use to offer self-direction within home and community-based services?  If your state does use a specific Medicaid authority, does it include support brokerage for those interested in self-directing?  How does your state communicate these options to families and people with I/DD interested in self-direction?  Are communication methods accessible and easily understood?  What role do case managers have in educating people about self-direction, and what training do they have to carry out this role?  Are individual support budgets available to self-direction participants?    How do you assure that parents and young adults are introduced to self-direction as part of transition planning?

If you want to know more:

• Crisp, S., Doty, P., Flanagan, S., & Smith, Gary (2010).  Developing and implementing self-direction programs and policies: A handbook.  Boston, MA:  National Resource Center for Self-Directed Supports.  https://nasddds.org/resource-library/service-innovation/developing-and-implementing-serf-direction-programs-and-policies-a-primer
• National Resource Center on Person Directed Supports (2016). National inventory of Self-direction programs:  Final report. Boston, MA.  http://www.appliedselfdirection.com/resources/national-inventory-self-direction-programs-final-report
• Centers for Medicare and Medicaid Services (2018).  www.medicaid.gov/medicaid/ltss/self-directed/index.html
• Brown, R., Lepidus Carlson, B., Dale, S., Foster, L., Phillips, B. & Schore, J. (2007).  Cash and counseling: improving the lives of Medicaid beneficiaries who need personal care or home- and community-based services.  Princeton, NJ, Mathematica Policy Research. www.mathematica-mpr.com/our-publications-and-findings/publications/cash-and-counseling-improving-the-lives-of-medicaid-beneficiaries-who-need-personal-care-or-home-and-communitybased-services