Being disabled is a full-time job

For over 10 years, in different settings and with varying titles, I did case management for people who were classified as “disabled.” The Social Security Administration defines disability as: “a severe impairment(s) that makes you unable to do your past relevant work… or any other substantial gainful work that exists in the national economy.” According to Minnesota Compass, about 650,000 people in Minnesota (11.5% of the population) have at least one disability. Of those, almost 50% aged 18-64 are employed. This column is about those who are unable to work due to disability.
There was a wide range of functioning among the people I worked with, and some needed more help than others. I began to notice that many were experts on their own health care. They taught me about their medical and mental health conditions. They navigated complex administrative systems such as Social Security, Medicare and Medical Assistance (MA or Medicaid). Even with professional supports, they faced tasks that took several hours a day – equivalent to a full-time job. These tasks had to be done regardless of chronic pain, depression, or any other debilitating symptom that was present.
I’m inclined to focus on people’s humanity, but for this column, I am breaking it down to dollars and cents. People who are unable to work due to disability may not perform traditional labor at a traditional workplace, but they add value for taxpayers. Living independently with supports is significantly less costly than living in a group home or long-term care facility. Managing complex, chronic health conditions with outpatient care is less costly than emergency room visits and inpatient hospitalizations. From my perspective, the majority of people we call disabled work full-time to live independently and manage their health care, and they are good at it. I believe this valuable occupation deserves adequate compensation.
We have programs that provide monthly cash payments to people who can’t work. I’m most familiar with Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). (These programs are separate from Social Security retirement funds.) There’s also worker’s compensation, which is intended to cover workplace injuries. Some jobs offer short- or long-term disability coverage as a benefit.
All too often, barriers to these programs and benefits are insurmountable. The outcome is that people who experience an injury or illness that keeps them from working are excluded from services and pushed into poverty.
First, these benefits are not universally available:
• Over 60% of applications for SSDI and SSI are denied.
• Fewer than half of employed people receive short-term disability as a job benefit; only 35% receive long-term disability. The rates of coverage increase along with income. People with the lowest income are least likely to be protected against lost wages if they become disabled.
• In Minnesota, all employers are required to purchase workers' compensation insurance or become self-insured. However, the Council for Disability Awareness reports that less than one percent of American workers missed work because of an occupational illness or injury.
Second, the benefits take a long time to apply for and receive. Those who are approved for SSDI face a five-month waiting period before they start getting checks. A denial can be appealed, but usually takes over a year to be processed. Most of us live paycheck to paycheck. If the paychecks stop coming, then what? The Council For Disability Awareness reported that 44% of consumer bankruptcy filings specifically cited medically-related work loss as contributing to bankruptcy.
Third, payments are insufficient. The rate of poverty among people with disabilities is twice that of the overall population. At $1,483/month, the average SSDI payment barely exceeds the poverty level. The National Disability Institute estimates that the additional cost to households with a disabled adult amounts is $17,690 a year. They note that income level is used to determine whether someone qualifies for public benefits. However, income does not take into account the direct and indirect costs experienced by people who live with a disability.
Not only does disability cause poverty, the National Disability Institute argues that poverty causes disability, citing prevalence of illnesses like asthma and environmental factors like lead poisoning among low-income communities.
A little over 10 years from now, the Social Security Act will be celebrating its 100th birthday. Workers have funded this program from the start. It’s our money. For many years, Social Security and disability rights had bipartisan support. Social Security continues to be very popular with the majority of Americans. However, there has been discussion of privatization, or replacing Social Security with the option of managing our own retirement savings.
Privatization doesn’t help lower income workers who need their whole paycheck to pay their bills, and it totally excludes anyone who becomes disabled and can’t work. Privatization could arguably work for people who make enough money to set aside funds into a 401(k) or similar account, but I wouldn’t recommend asking an older American if they’re willing to give up their Social Security. Did I mention it’s our money?
The reality is that any of us could become disabled, at any time. The Council For Disability Awareness reported that the number one cause of short-term disability is a common condition: pregnancy. The Disability Rights Movement fought for workplace accommodations and equal access to employment, but working is just not the best option for everyone.
The work done by people with disabilities to maintain their health and independence has value. There is persistent and, in my opinion, misguided concern that aid will be given to those who don’t deserve it. This creates a barrier to funding programs and services that support disabled people, their families, and professional supports. Health and human services policy should simplify and expand access to assistance, not push people into poverty. I hope our leaders will look beyond the cost of public aid in dollars, and recognize it as compensation for the valuable contribution made by people we call disabled.