In recent months, we have seen people with disabilities being dragged out of legislators’ offices in the fight to keep their Medicaid benefits. This fight is not a new one in the disability community, but these activists are not just fighting for their rights to healthcare. For people with chronic illness and disability, access to Medicaid is essential for participation in all other aspects of life including romantic relationships and marriage.
Imagine you are disabled. You use a $30,000 custom power wheelchair to get around. You cannot perform activities of daily living such as dressing, bathing, eating or using the bathroom by yourself. Providing this daily care costs $40,000-80,000 per year or more depending on the level of care that is required. Medicaid is the only insurance that pays for the costs of long-term caregiving, whether provided in the home or a care facility.
Many people with disabilities also receive disability benefits such as Supplemental Security Income (SSI). This is a cash benefit given to people with disabilities who meet very specific physical and financial criteria. If approved, an SSI recipient gets $735 per month, regardless of where they live in the country. In most places this check won’t pay for basic necessities like shelter, food, or medical costs. You therefore must rely on other social safety net programs like food stamps, Medicaid, and housing programs to support your basic needs.
SSI might be the only income a person with a disability receives, despite it having “supplemental” in its name. And that is not necessarily because a person cannot work. Rather, it may be because employers are reluctant to hire someone with a disability. The Bureau of Labor Statistics estimates the employment rate for people with disabilities was 17.9% in 2016. Despite that low number, many more people with disabilities want to work and can.
Financial situations can be so dire, couples pursue divorce just to qualify, allowing the abled-bodied spouse to keep some of their assets.
In the rare case that a person with a disability is fully employed, they need to be careful that they don’t make too much money or all their social safety net benefits will go away. The caregiving and medical costs alone can easily total over $100,000 per year. Paying out of pocket without some government assistance is simply impossible for most people. Without reform, living at or below the poverty line is the norm.
Furthermore, these safety net benefits also impose a marriage penalty. When a person with a disability wants to get married, these benefits will often be taken away, and the non-disabled spouse is then expected to take total financial responsibility. If a person with a disability marries another person with a disability, benefits are still lost or reduced and neither person adequately can provide for the other. SSI, for example, allows a married couple to have just $3,000 in assets before benefits are discontinued. Assets don’t count your first home or first car, but do include 401ks, all investments, savings and checking accounts, and life insurance policies greater than $1,500. In some cases, even couples living together can have their SSI benefits reduced without being legally married. Medicaid sometimes allows for more assets than SSI but the limits for Medicaid are still at the poverty level in most states, forcing couples to deplete all of their hard-earned money just to have their basic needs provided for. Not a great way to start a blissful life together.
The marriage penalty also affects non-disabled couples too. If you or a spouse become disabled while married, a couple must spend-down their assets in order to have the government provide basic needs indefinitely. Financial situations can be so dire, couples pursue divorce just to qualify, allowing the abled-bodied spouse to keep some of their assets. Divorce is a reality that no one should have to face because they got injured or sick.
The very nature of America’s safety net programs force people with disabilities into perpetual poverty. We are often forced to choose basic needs over romantic relationships and marriage. This is our reality. For better or worse…