Examining Older Adult Access to Self-Direction through 1915(c) Waivers

Background and Purpose: Self-Direction (SD) is a service delivery model rooted in choice, empowerment, and control over long-term services that has been found to positively impact quality of life and health outcomes for older adults and people with disabilities. States can choose to offer SD through a variety of mechanisms, the most common being Medicaid 1915(c) waivers. States determine key SD program characteristics including level of state investment, services allowed under SD, and employer and budget authority, which may affect access and use. While state use of SD and participation in the model have grown over time, it is unclear to what extent this expansion has included older adults. This study addresses this gap by examining how SD design in 1915(c) waivers that serve older adults varies across states.

Methods: This was a mixed-method study, using descriptive statistics and Framework Analysis to analyze Fiscal Year 2023 1915(c) waivers that serve older adults. A total of 257 waivers were initially collected from 41 states. Descriptive statistics and frequency counts were used to summarize the information on state goals set for participation in SD and projected funding for services that allow SD. Framework Analysis was used to analyze Appendix E of the 1915(c) waivers, as this section describes SD provision.

Results: Of the 60 waivers that serve older adults, 35 allowed SD (58%). States are required to list their goals for participation in SD and, among waivers that allowed SD, this varied from 0.33% to 100% of waiver participants, with 26 of these waivers (75%) setting goals for less than 25%. Qualitative results showed states have different processes for determining eligibility for SD. Specifically, there are differences in the determination of capacity to self-direct, with some waivers relying on physicians to determine capacity and eligibility and others relying on case managers.

Conclusions and Implications: Findings indicate varied, yet overall low goals for SD participation in 1915(c) waivers serving older adults, potentially limiting availability and accessibility. Differences in approaches to capacity determination raise concern regarding equitable access to SD. Marginalized older adults experience more barriers accessing healthcare services, which in turn may lead to increased difficulty accessing SD for states that require physician clearance. Conversely, relying on case managers to determine capacity runs the risk of allowing front-line worker implicit bias based on ageist and ableist assumptions to influence decisions of eligibility for SD. States should think critically about their processes for determining capacity and eligibility of SD among older adults and work to mitigate unintended barriers to access that may be occurring due to ageism and ableism. Overall, older adults’ access to and experience with SD may be significantly influenced by their state of residence.