Chapter 3. Qualitative Research: Interviews with Key Informants from the Disability Community

Selection of States and Participants

We interviewed participants from ten states; the ACA implementation characteristics for each participating state are summarized in Table 2. Half of the states (N=5) opted to expand Medicaid to cover low-income adults up to 138 percent of the FPL. Two of the states pursued a nontraditional Medicaid expansion plan using Section 1115 waivers (for example, Medicaid funds used as premium assistance for newly eligible adults to purchase QHPs), and three of the states had not expanded Medicaid. We classified states’ success with Marketplace enrollment using table 1 in Blumberg et al., which defines “high,” “medium,” and “low” success rates, respectively, on the basis of enrollment of more than 25 percent, from 15 percent to 25 percent, and under 15 percent of the state’s target population (defined as pre-reform non-group insurance enrollees and uninsured individuals who are ineligible for public insurance or affordable employer-based coverage).⁷⁶

* Enrollment success is based on Blumberg et al., table 1.⁷⁷ The original table shows each state’s current enrollment (as of April 2014) in the Marketplace as a percentage of the target population (defined as pre-reform non-group insurance enrollees and uninsured individuals who are ineligible for public insurance or affordable employer-based coverage). We have classified states into three broad categories of enrollment success using this percentage: low (below 15 percent), medium (15 percent to 25 percent), and high (above 25 percent).

** Community First Choice (CFC): States participating in the Section 1915(k) Community First Choice State Plan Option.⁷⁸ Dual Demonstrations (DD): State participating in the State Demonstrations to Integrate Care for Dual Eligible Individuals.⁷⁹

*** Participants provided different information on implementation status.

****The state’s original proposal for Medicaid expansion involved a Section 1115 waiver. However, the state’s new governor now plans to implement a standard Medicaid expansion.

Most states had medium or high Marketplace enrollment success (N=5 and N=4, respectively); one state had low enrollment success. For LTSS options specific to services for people with disabilities, the CFC option was being implemented by four of the states shown in the table, and the State Demonstrations to Integrate Care for Dual Eligible Individuals, or “Duals Demonstration,” option was being implemented in four of the states shown in the table. The states also represented four Marketplace types: federally facilitated (N=5), state-based (N=3), state partnership (N=1), and federally supported, state-based Marketplaces (N=1).

Within each identified state, we purposely selected participants to provide broad perspectives on experiences with the ACA among people with disabilities. We targeted state-based community leaders (not employees of state agencies) who worked or volunteered for disability organizations and were familiar with ACA implementation in their state. In selecting our participant sample, we aimed to identify participants who have disabilities themselves and displayed diversity across functional categories of disability and demographic characteristics. We created an initial list of potential participants and organizational affiliations, then obtained feedback and additions from study partners and the National Council on Disability. In states where we did not have an individual identified who met the participant selection criteria, we identified and contacted individuals and organizations with knowledge of key disability stakeholders in the state to ask for recommendations for potential interviewees. Potential participants were then contacted by the project team by e-mail and phone and invited to participate. In total, we contacted more than 60 individuals in the outreach process. Among state-based disability rights leaders who declined to participate and were themselves people with disabilities, limited knowledge of the ACA was a commonly cited reason.

Overall, we were able to identify 16 suitable interview participants for the ten state-based interviews. Four interviews had one interviewee each and the other six had two interviewees each. Table 3 displays characteristics of the 16 interview participants. Half (N=8) of them had personal disability experience, either directly (N=5) or through an immediate family member (N=2) or other individual (N=1) for whom the participant was caring. Participants’ personal disability experience included physical (N=5), vision (N=1), hearing (N=1), developmental (N=1), and other (N=1) disabilities; two participants indicated two disability categories, and one participant with personal disability experience did not disclose a disability category. In most of the interviews—in eight out of ten states—at least half of the interviewees had a personal disability experience.