October 1, 2004
Barbara S. Cooper, Bob Williams, Henry Claypool, Michael Perry, Adrianne Dulio
Waiting for Medicare: Experiences of Uninsured People with Disabilities, Bob Williams, Adrianne Dulio, M.A., Henry Claypool, Michael J. Perry, and Barbara S. Cooper, The Commonwealth Fund, October 2004
Medicare plays a vital role in providing decent, appropriate, and affordable health care coverage to more than 40 million beneficiaries. The vast majority of Americans with Medicare are age 65 and older, who typically enroll and become eligible for coverage within three or four months of turning age 65. However, the same is not true for the nearly six million people under age 65 who qualify for Medicare because of a severe and permanent disability. Federal law requires these individuals to wait two years after they receive Social Security Disability Insurance (SSDI) before their Medicare coverage takes effect.
There are growing indications that many individuals in the waiting period face enormous difficulties obtaining needed health care, and that as many as one-third may be uninsured. The Commonwealth Fund and the Christopher Reeve Paralysis Foundation commissioned this study to gain insight into the experiences of people with disabilities under age 65 in the Medicare two-year waiting period. This study included two focus groups in Atlanta, Georgia, in February 2004, followed by nine in-depth telephone interviews in March and April 2004 with participants nationwide. Participants had an array of disabilities, including spinal cord injury, multiple sclerosis, cardiovascular disease, diabetes, several cancer, bipolar mood disorder, severe depression, HIV/ AIDS and obsessive compulsive disorder (OCD). Many had both physical and mental conditions. While several Atlanta, Georgia focus group participants are enrolled in Medicaid, most participants in this study are without any health insurance during the two-year waiting period.
Insights from the focus group and interview participants provide a powerful commentary on the lives of people with disabilities attempting to make it through the Medicare two-year waiting period. Participants speak candidly about how lack of coverage during the waiting period often acts as an insurmountable barrier to the care and services they require. They speak of foregoing care; stopping medications and therapy; feeling depressed and anxious about the future; and feeling less independent and in control over their own lives. For most, just trying to survive and get their most basic human and health care needs met is a never-ending job. Specific insights from the focus groups include:
- Participants say the Medicare two-year waiting period impedes their ability to live full lives. Most believe that without health coverage and Medicare, they cannot return to work, regain mobility, participate in their communities, and stop depending on family members and friends for their basic needs. Rather, they live constrained lives, fearful of their next health crisis.
- Many participants suffer irrevocable physical and mental deterioration during the waiting period. Foregoing doctor's visits, treatments, medications, and rehabilitation therapy has resulted in irrevocable damage to their physical and mental health. Others talk about the stress and worry of being uninsured with a disability, and how that has affected their overall well being.
- While many want to return to work, they are unable to do so. One striking insight of this study is the degree to which participants see Medicare's two-year waiting period as a barrier to work. Only two out of 21 study participants work; the others expect to return to work in the future, but do not see how, given their current state. Many feel they need better access to health services before considering working again.
- Many participants lost their Medicaid coverage when they received SSDI benefits. Participants found themselves in a Catch-22. When they received a small increase in cash benefits, they lost health benefits through Medicaid. Some with incomes below the poverty line never even met their state's Medicaid eligibility criteria.
- Lack of knowledge about Medicare, the two-year waiting period, and other health coverage options is a problem for most participants in this study. Many fear that if they return to work, they will lose both SSDI and their Medicare coverage once it starts. Most are confused about Medicare and the types of services it will cover once they enroll. While some participants are aware of federal work incentives they could use to return to work and retain both their SSDI and Medicare coverage, much of what they heard was incomplete or inaccurate, and few report having used these incentives. Even the most persistent participants in this study say they have no information resources for health coverage and are unable to get their questions answered.
- Since many cannot qualify for Medicare or Medicaid, private insurance is their only option, yet they believe it is out of reach. Most participants see private health insurance as unaffordable. At some point, many had private insurance—usually when they had a job—and recall not worrying about how to pay for their employer-based insurance. Some used COBRA to maintain their private insurance for the short period after they left their jobs, but found it too expensive to continue for the full period allowed under the statute. Some also worry that they could no longer qualify for private insurance because their pre-existing conditions would either make them ineligible or such coverage would be extremely costly.
- Finally, all participants want the Medicare two-year waiting period eliminated. Most perceive the two-year rule as an unnecessary barrier between them and the health care system. They have strong emotions about the waiting period—they feel it is "punitive" and "does more damage than good." They feel their lives are put on hold while they wait for health coverage and believe this is fundamentally unfair. They see their health deteriorating and returning to work becoming increasingly impossible.
To learn more about these and other insights from this study, please refer to the full report of findings.