Employment-Related Health Insurance and Service Delivery Needs of Persons With Disabilities

Focus Group Participants

We conducted six focus groups at five different geographic locations in Massachusetts with each group consisting of between 4 and 13 persons. The project was reviewed by the University of Massachusetts Medical School Institutional Review Board (IRB) and was determined to be exempt from IRB oversight. Focus group participants were purposively sampled and recruited through state agencies (e.g., VR), community-based organizations (e.g., community mental health centers, supported employment programs, and independent living centers), and disease-specific organizations (e.g., Multiple Sclerosis Society) that employ, serve, or represent persons with disabilities. The agencies and organizations were selected that represented a range of disability types and operated in the same geographic location as the respective focus group. We recruited through disease-specific organizations and agencies that employ persons with disabilities to ensure that some focus group participants had relatively high earned income and employer-sponsored health insurance whereas participants recruited through their participation with state agencies or community-based organizations were more likely to have lower levels of income and public health insurance. We expected to find that the employment support needs of higher income persons with employer-sponsored insurance could differ from lower income persons with public insurance. To recruit participants, the agencies and organizations distributed information about the groups to potential participants and the individuals voluntarily contacted the researchers. Potential participants were screened for eligibility by phone or email and were included when they met the following criteria: (a) self-reported a physical or mobility disability, a mental or emotional problem, a sensory impairment, or a long-term illness; (b) ages 21 to 64 years; (c) English-speaking; (d) community-dwelling; (e) employed or actively looking for work; (f) covered by private health insurance or Medicare (may also be covered by Medicaid as a secondary insurance); (g) able to consent to participate in the study; and (h) makes his or her own important decisions, for example, health care, employment, and expenditure decisions, without a guardian. In total, 54 individuals participated in the groups.

Focus Group Sessions

At the start of each session, focus group participants were informed in writing of the purpose of the study, that their participation was voluntary, that information provided would be confidential, and that the sessions would be audio-recorded. Participants were asked to complete a brief questionnaire to gather data on their demographic and disability characteristics. A focus group guide was used to structure the discussions during the focus group sessions, which sought to determine participants’ employment-related health insurance, health care, and service delivery needs. We asked participants questions to gain an overall understanding of participants’ coverage, health status, and types and levels of service utilization, for example, “What insurance plans do you have?” “Has anyone explained the coverage of your plan?” “In the past year, what health care services did you receive that were the most important to you?” and “How much did you use health care services last year?” Participants were also asked to describe services that were critical to their ability to work, including why the services were important and the consequences of not receiving the services.

We also asked participants about services they needed but were not receiving, for example, unmet health care needs that would help participants to maintain employment, services that are important to participants’ employment that are not covered by their insurance, and whether participants have been unable to work or were limited in their work because of an unmet need for medical services. Participants were also asked about out-of-pocket costs for health care services including the amounts and types of costs and the effects of the costs on their well-being and employment. Finally, we asked participants how their health care providers and the health care service delivery system affected employment, for example, whether their employment was taken into account in the delivery of their services or whether their care was being coordinated by a health care or disability service provider. We used non-assumptive probes and follow-up questions to encourage participants to elaborate and provide examples from their own experiences. Each session lasted approximately 2 hr; sessions were audio-recorded, and participants received a US$50 stipend.

Analysis

Focus groups’ audio recordings were transcribed verbatim, and transcripts were checked by the researchers for accuracy. The transcripts were coded using ATLAS.ti (Version 7). As focus group transcripts became available, we undertook a line-by-line open coding of the transcripts to identify emerging themes. Coded themes from the first transcript were grouped into provisional conceptual categories. As subsequent transcripts were coded, themes were examined to determine whether they were consistent with existing categories or represented new categories. Because we began data analysis immediately after initial focus group, we were able to continuously confirm and refine emerging themes with participants in later groups. We used this iterative, constant-comparative approach (Corbin & Strauss, 2008) to code all transcripts, creating a final set of conceptual categories and selecting quotes representative of common themes and concepts across focus group participants.

Participant Characteristics

Table 1 provides descriptive statistics on the characteristics of focus group participants. Among participants, there was a wide range of ages, education levels, earned income, weekly work hours, disability types, and insurance types. The average age of participants was 46 years, ranging from 29 to 63 years. The education level of participants was high with more than half having completed a 4-year college or postgraduate degree. Most participants were non-Hispanic and White. The distribution of income was bimodal with approximately 80% of participants reporting earned income of either less than US$10,000 or more than US$40,000 annually. Participants reported a variety of public and private insurance types. Approximately 29% of participants had insurance through their employer, and 46% had dual Medicare and Medicaid coverage.

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Table 1.

Individual Characteristics as a Percentage of Participants.

Characteristic	n	%
Education
High school or less	8	15.7
Some college or vocational education	15	29.4
Completed 4-year college degree	9	17.7
Postgraduate degree	19	37.3
Hispanic	4	7.8
Race
Black or African American	5	9.8
White	43	84.3
Other race	3	5.9
Employed	33	64.7
Work hours
10 or fewer hr/week	10	25.6
11−20 hr/week	11	28.2
21−30 hr/week	2	5.1
31 or more hr/week	16	41.0
Earned income
<US$10.000	18	47.4
US$10,001–US$20,000	4	10.5
US$20,001–US$30,000	1	2.6
US$30,001–US$40,000	2	5.3
US$40,001–US$60,000	8	18.4
>US$60,000	5	13.2
Disability
Limited because of physical, mental, or emotional problems	40	80.0
Use special equipment (cane, wheelchair, a special bed, or a special telephone)	26	52.0
Trouble learning, remembering, or concentrating	29	59.2
Limitations in activities of daily living	10	19.6
Limitations in instrumental activities of daily living	24	48.0
Insurance
Participant employer-sponsored only	15	28.9
Participant employer-sponsored and Medicaid	2	3.9
Medicare and Medicaid	24	46.2
Medicare without Medicaid	7	13.5
Other Medicaid	1	2.0
Other	3	5.8

Eighty percent of participants reported being limited because of physical, mental, or emotional problems. Twenty percent reported limitations in activities of daily living, and 48% reported limitations in instrumental activities of daily living. Nearly two thirds of participants (65%) met the SSA disability standard as indicated by Medicare or disability-based Medicaid enrollment. Participants were not directly asked about their current health status or specific disorders/diagnoses. However, many participant responses provided health status information, and it was evident that there was substantial variation in health status, with a substantial percentage of participants having chronic conditions.

Current Health Care Services and Employment

When asked to describe their overall health care experiences in a single word, the majority provided a negative response (56%; e.g., awful, inadequate, fragmented, complicated); 27% provided a positive response (comprehensive, positive, good); and 17% of responses were neutral (okay, mixed). Participants reported the full range of types of health care services used in the prior year, including inpatient, outpatient, primary care, behavioral health and other specialized care, prescription drugs, DME, and PAS. Many participants reported relatively high levels of utilization as these two examples illustrate:

I do pretty good. I have a nurse that comes twice a day, I have primary care, I have both a psychotherapist and psychiatrist. I have a cardiologist and GI specialist, and I’ve been to the ER a number of times and I have been admitted recently.

I had back surgery so I had durable equipment; I had a hospital bed. I had a back brace. I have PAS that helps me with lower ADL management on a daily basis. Also my medicine. I have MS so I have a walker that I use at times. I have a cane and a mobile wheelchair that I use at times.

In addition to services provided through health insurance, participants received assistance with health care, disability services, or health care costs through a variety of means. Tax-favored payment methods (health savings account or flexible spending arrangements) were used to reduce out-of-pocket costs for health care services. The state VR agency provided vehicle and home modifications to support employment for some participants. Reduced-cost transportation services were frequently reported. Participants also reported receiving assistance from disability-serving agencies and disease-specific groups such as the Department of Mental Health, Easter Seals, and Multiple Sclerosis Society. A few participants were also assisted by health care providers, primarily, mental health providers that provided reduced- or no-cost services to persons who otherwise could not afford the services.

As a subset of all health care services, participants were asked to describe the services that are important to work. Responses varied widely. Participants frequently structured their answers by describing services that work is contingent on—that is, the person would not be able to work without the service. The answers include services typically covered by most health insurance, those covered only by Medicaid, and services generally not covered by health insurance. These two examples illustrate covered services:

One area that I’ve needed in order to stay functioning in my job has been very intensive cognitive therapy. Those services are limited by insurance companies to a certain number of visits per year . . . there was a point where my therapies had to be discontinued because of insurance, and basically I was going to ride out the end of the year until a new plan year. But in that time there is so much that has been lost.

Yeah I see [provider] over here . . . My nurse practitioner is there so without the antidepressants she gives me I would not be able to work. There is no way that I could get through the day without them.

PAS and more extensive coverage for DME are examples of services covered by Medicaid but not typically covered by other insurance types:

I do need it [Medicaid] to cover the PCAs [PAS] primarily, but also to cover durable medical equipment. You see I use a chair, I use a walker, and that’s not something that the primary insurance would typically cover.

Services critical to employment that were outside the range of most health insurance plans entities included assistive technology, job coaches, and training.

Unmet Need for Services

Participants were asked about services they needed for employment that were not being met by their health insurance. Responses were generally in two categories. The first included services covered by insurance; however, because participants encountered limits on the quantity or type of service available, there was an unmet need. The second category included services that are not typically covered by insurance. In both categories, the unmet need was often related to the person’s disability. For example, in the first category, participants reported limits on the number of physical therapy sessions; limits on the type or cost of DME, a drug formulary that did not include needed medications; limits on the length of stay in a psychiatric hospital; and limits on the number of chiropractor visits. One participant explained,

A gap that I have encountered in the years following my most recent cornea transplant, and I have had 8 cornea transplants in the last ten years, we were going to try a new anti-rejection drug to try to prevent rejection. We found out pretty quickly that Medicare did not cover this drug. It’s a relatively new drug and of course the cost is prohibitive, it’s about $2000 a month, so that is a gap I have encountered and so I just go without it.

In the second category, participants reported dental services (prevention, treatment, and restoration), chiropractic care, PAS, vision services, holistic or alternative medicine (acupuncture, acupressure, supplements, and vitamins), hearing aids, clothes alterations for work clothes, and transportation. For example,

If I am ever in pain, acupuncture is the only thing that will take away the pain. It’s amazing, it’s like a miracle. My acupuncturist said I should see him every week to work with my muscles . . . But again I can’t really afford to do that.

In contrast to the substantial unmet need expressed by some participants, other participants reported low levels of unmet need. Low levels of unmet need were most often reported by participants with Medicaid (MassHealth) as secondary coverage:

I have Medicare and Mass Health . . . I went to the doctor’s today and to the endocrinologist two weeks ago, everything is covered. I have to get a bone scan and that is covered. I am there all the time so I feel lucky. I have no problems with my medications they cover everything.

Cost of Services

Participants reported a wide variety of costs for premiums, co-pays and deductibles, and for non-covered services. Many participants found the costs burdensome and reported cost-related problems obtaining care and foregoing other needs to pay for health care. To meet medical expenses, some participants reported limiting their food purchases, delaying payment on student loans, sharing their housing costs with others, and delaying payment on bills.

Professionals with a good salary also face difficulty; It’s a constant juggling deciding what to pay for, what food you eat, what bills to pay. I don’t live lavishly but it is definitely hard to live up there. My rent is quite high, but where else am I going to live.

I am hoping to get modifications to my wheelchair to make it more usable. If that is not covered by insurance then I need to see if I can’t figure out a way to come up with the money and it is not going to be a small amount. So I am not quite sure how that is going to affect my ability to do other things, like medications.

While many participants reported high out-of-pocket costs, some participants reported low out-of-pocket costs. Those with low out-of-pocket costs were generally either persons with low levels of health care utilization or low-income persons with Medicaid secondary coverage:

In the discussion I haven’t been able to say much because I don’t have that many problems coordinating my health care. Mass Health and Medicare pay for everything for me practically. And I have no trouble with co-pays.

Service Delivery

Participants were asked about their experiences with health care service delivery; whether anyone was coordinating their care and whether they have had conversations with their doctors about employment. Most participants were managing their own care and did not have anyone coordinating their care, as one participant summarized, “Yes, I am my own case manager; that’s a full-time job in and of itself.” However, there were exceptions. Among participants with some level of care coordination, the care coordination was being done by a social worker, psychiatrist, mental health provider, or in some instances, a family member.

Many participants reported that the efforts to coordinate their health care, disability-related services and activities and, and employment were often overwhelming. It appeared that the complexities of coordinating care were most burdensome for people working full-time or near full-time because of the constraints on available time.

First of all making sure that something actually is covered; what about dental? What about eye glasses? Finding out if they are covered, and if they are it’s often not with the people I used to see so then I have to hunt around; there are waiting lists. There is only one of me and there are only twenty four hours in the day.

I definitely agree that there is a piece that gets very wearing. The experience of it being so unstable, you work and work and work and finally get it to come together, and the next thing you know it is falling apart, which definitely is kind of emotionally wearing. Hearing all this reminds me of how hard we work on trying to do the medical aspects of things. How do we find time to work on top of this? Because a lot of times it is like a full-time job.

Participants elaborated on two important challenges involved in their care coordination efforts—securing needed services and coordinating work schedules and health care appointments.

I have had MS for over a dozen years now and I have learned over that time what the alternatives are and how to work around when insurance says it won’t [pay for the service]. I don’t mean that in a manipulative way, just building as strong a case as possible to the insurance company and making sure that my doctors are all aware of things that they will be able to use to build the case.

You know what was a good thing when I was working? I worked second shift 3 to 11:30 so I was able to schedule my psych appointment, my medical appointments, my therapy appointments and whatever else I had during the day.

Consistent with the burdens experienced by working participants, some non-working participants reported the burden affects their work status.

I have so many doctors and I get treatments; between all my appointments and everything else. I would like to go back to work but I just don’t know how I [could] manage all that. I make all my own appointments.

I go to my eye doctor once a month and I sometimes have to get three days of steroids. Who is going to employ someone who has to get steroids three days a month? And after, I am all messed up for another week. Realistically how am I ever going to get a job? There is no way someone is going to hire me when I’m available.

Most participants have not had conversations with their primary care physicians about employment. Among the conversations that did occur, some encouraged work and others discouraged work (“you shouldn’t be working,” “told me I would never work again”). It was more common for participants to report having conversations with a psychiatrist or therapist that encouraged employment. Participants also reported that their care regimen (e.g., narcotic pain medication) interfered with their work performance; however, “there’s nothing they [health care provider] can do.”

Limitations

The focus group data generated in this study provide qualitative information on the employment-related health insurance and service delivery needs of persons with disabilities; however, the data cannot be used to quantify the need. In addition, although focus groups included persons with a range of ages, disability types, education levels, insurance types, and employment levels (see Table 1), participants’ experiences cannot be generalized to represent the experiences of all persons with disabilities in Massachusetts. The experiences of persons in Massachusetts may be different from the experiences of persons in states that are not comparable with Massachusetts, for example, states with larger rural populations or states with fewer services for persons with disabilities. Additional quantitative research is needed to obtain estimates for the number of persons with employment-related health care needs, the quantity of services needed across service types, and the costs of services. Quantitative approaches could include large-scale surveys of persons with disabilities to explore questions related to employment and health care services, as well as analysis of claims from programs such as MBIs to estimate service utilization and cost.

In addition to research to quantify the needs, there is also need for policy analysis to further assess the design options for a wrap-around plan, including eligibility, coverage, participant cost sharing, and program administration and funding (e.g., federal, state, or both). Possible models include the MBI program, a Medicaid expansion, and/or the ACA-based federal subsidy for private insurance purchased through insurance exchanges.