We endorse the decoupling of Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) from Medicare/Medicaid. This decoupling will enable many people with disabilities to be employed without losing healthcare and long-term support services.
To receive Medicare/Medicaid, most people with disabilities must be recipients of SSI and or SSDI. Recipients must prove their inability to be gainfully employed.
Millions of dollars are spent annually by government and not-for-profit agencies working diligently to improve the employment rate of people with disabilities. Many incentive programs exist to persuade employers to hire this cohort, remove them from Social Security's rolls, and lift them out of poverty. Many incentive programs entice SSI/SSDI recipients to find employment. Despite these efforts, the employment rate of people with disabilities continues to be pitifully low, with a 2021 employment rate of just 19.1%. Most households with disabled members live in poverty. We believe that a significant reason for this is the ongoing need for Medicare and Medicaid.
SSI/SSDI is our country's safety net. It is an income replacement system that enables people to live when they cannot participate in substantial gainful work. Undeniably, some people with disabilities need SSI/SSDI. Regardless of our ability to work, we all need good, affordable, and accessible healthcare throughout our lives. We also may need good, affordable, and accessible long-term services and LTSS). Healthcare and LTSS are not part of a safety net. They are part of our civil rights. We must acknowledge that LTSS are also part of civil rights.
LTSS includes personal assistant services, ongoing therapies, maintenance medication, and durable medical equipment. Currently, Medicaid is the primary and often the only healthcare plan that funds LTSS for people who expect to incur those expenses for more than a few years. Medicaid is only available to people living at or near poverty levels. While long-term care insurance plans cover LTSS, people with disabilities/pre-existing conditions cannot purchase most long-term care insurance plans. These plans also have ridiculously low lifetime caps.
For many people with disabilities, LTSS can be very costly. Durable medical equipment, such as powered wheelchairs, often costs tens of thousands of dollars. For people who need a substantial amount of personal assistant services, these costs can easily be more than $100,000 annually. People with long-term disabilities often need expensive medicine, ongoing therapies, and surgical procedures. It is unrealistic to expect that most households can afford these disability-related expenses.
There are programs, such as the California Regional Centers, that pay all healthcare-related and long-term support services expenses for all people with developmental disabilities if any other agency does not cover the costs. They do this regardless of income or assets. These programs may serve as models for how Medicare/Medicaid works after decoupling them from SSI and SSDI.
For many people with disabilities, decoupling SSI and SSDI from Medicare/Medicaid will remove the disincentive to work, pull themselves and their families out of poverty, and benefit our economy.
In summary, we endorse the decoupling of SSI and SSDI from Medicare/Medicaid. A detailed study should be immediately undertaken, including a financial impact / cost-benefit analysis and a migration roadmap.