Worth living: 4 ideas to make life better for people with disabilities and their caregivers

Would you rather be dead than disabled? If you answer yes, you’re not alone. More than 84% of U.S. doctors felt that quality of life was lower for those with a disability. The general public feels similarly, assuming disability equates to misery. But if you are disabled, your answer is likely quite different.

Scholars use the term “disability paradox” to describe the majority of those with disabilities who feel they have a good quality of life, if not better than their able-bodied counterparts.

When discussing the diversity, equity, and inclusion (DEI) movement, we rarely discuss those with disabilities. But more than one in four adults has a disability; more than 650 million people, or 10% of the population worldwide. That makes disabled people the largest minority group globally.

My daughter Katie exemplified the disability paradox. She had autism and ADHD and later developed bipolar disorder as a teen. She screamed for four hours recently, and when she was done, I asked her directly, “Do you feel your life is worth living?” She said yes, she was having a wonderful time.

My daughter — a vibrant young woman who was excellent at grooming horses and could correctly identify all the birds of North America by sight or sound — was not a burden. The idea that her death at age 21 this summer provided relief grossly belies the love and purpose we found in caring for her.

Katie’s goal was to develop a career, but she never had the chance. Even if she had, the employment gap shows that those with disabilities are employed at a 21% rate compared with those without disabilities (65%). When working full time, those with a disability earn 87 cents for every dollar compared with those without disabilities. Yet, the likelihood of earning a full-time salary is lower for those with disabilities. Among those who work part time, this equals 66 cents on the dollar for workers with disabilities compared with those without disabilities.

Janitors and building cleaners are the most prevalent occupations for individuals with disabilities, compromising 11% of this occupation’s workforce. Other significant professions for employees with disabilities include truck drivers, salespeople, drivers, cashiers, salespeople in retail, and laborers. The financial burden of having a disability is great.

With or without disabilities, our legal system favors workers who earn more. When attorney Kenneth Feinberg was tasked with distributing compensation to the families of 9/11 victims, the congressionally funded effort allotted more money to the former Enron mogul than the firefighters. Later, Feinberg’s view on compensation shifted. When distributing private funds to the families of Virginia Tech shooting victims, he gave each person an equal amount.

The U.S. Department of Agriculture estimates that it costs $233,610 to raise a child until age 17. The cost of raising a child with an intellectual or developmental disability is much higher, ranging from $1.4 million to $2.4 million. Many mothers of children with disabilities find themselves out of the workforce or underemployed due to the demands of caring for their children.

Compounding the economic woe, only 44% of mothers and 52% of fathers with special-needs children report good health vs. 63% to 67% of parents without special-needs children. There are also higher rates of household food insufficiency for special-needs children (42%) than children without (31%). Hence, parents who are caregivers for children with disabilities, who need more money and better health to accommodate the increased demands of caring for their children, are less likely to have either.

Learning to advocate for Katie wasn’t easy for me. When she was getting ready for preschool in our hometown, I took the doctor’s recommendations for special services to the school district but was told no. I knew I needed to develop more effective advocacy skills. I started by reading How to Argue and Win Every Time by Gerry Spence, a trial attorney who claimed to have never lost a case. Then I practiced a lot.

Our relentless advocacy to secure appropriate services began with special school from preschool through eighth grade, and then therapeutic residential school from ages 14 to 21. We obtained guardianship to continue advocating for her as a young woman. Additional advocacy was required to obtain Social Security, Medicaid, and residential services through the New Jersey Division of Developmental Disabilities.

Our daughter required several specialists to manage her chronic conditions. This meant the presence of a parent or guardian and travel, plus the out-of-pocket costs of private insurance copays or deductibles. Few physicians see patients with Medicaid because the reimbursement rate is lower than it is with private insurance. Difficulties covering medical expenses are higher in households with special-needs children (16%) vs. non-special needs (7%).

Wouldn’t training everyone from doctors to employees in DEI improve outcomes for people with disabilities? A 2024 systematic review challenged the assumption that DEI training was effective for health-care workers. Gaps in translating the training into practice and a number of methodological issues in evaluating the training’s efficacy were to blame. This is notable because the U.S. Census Bureau reports that over 22 million workers (14% of the workforce) are employed in health care, which one would think would make health care the perfect training ground. But it’s not.

So what can we do?

Special-needs parents are under tremendous stress. Once, a woman saw my child’s tantrum in the doctor’s waiting room and followed me to the parking lot. She banged on my car windows, saying that if I wouldn’t beat my daughter for disrespecting me, she would do it. It was a frightening experience that prompted me to call the police.

Social Security Disability Insurance (SSDI) helps fund individuals with severe physical or mental disabilities that hinder their ability to perform a job. But there’s a $1,620 cap on how much they can earn from work each month. If you can earn more than that, the SSA considers you able to work and ineligible for benefits. Helping people with disabilities to increase their income and build savings will go a long way toward building self-sufficiency.

The rules, regulations, and exceptions for working and retaining benefits are complex. Social Security has a 21-page booklet titled “Working While Disabled: How We Can Help,” which confused me further. I asked another parent, whose son works and accepts SSDI, for clarification, but she wasn’t sure and said an attorney should “spell it out” for me. While the Plain Writing Act of 2010 requires federal agencies to communicate with the public in a clear, understandable manner, this fails to address that the rules themselves are too complicated to understand. Legislating a new and improved, streamlined policy would help.

Per the Fair Labor Standards Act of 1938, Section 14(c) waiver program, people with disabilities often earn less than minimum wages, as little as $3.34 an hour. The most common settings are “sheltered workshops,” which provide menial labor, such as breaking down cardboard boxes or placing silverware in napkins. In 86 years, the program has failed to provide a stepping stone to greater employment. Providing customized employment, job training, and employment support would eliminate the need for Section 14(c). People with disabilities are just as concerned about their compensation as anyone else. Eliminating this legislation would increase the earning power of people with disabilities.

People often fail to grasp the depth of the bond and joy our daughter brought to our lives. Sometimes there are well-intentioned but misguided comments that are based on that “myth of relief” I mentioned earlier, or on the “better dead than disabled” misconception.

We love and value our disabled children, even our grown-up children, as much as you do yours. The caregiving we do is part of that love and does not demand your pity. What it demands is your help in making the lives of our children with disabilities as rich and full and worthy as they can be.

Lynne Moronski is an associate fellow of the Leonard Davis Institute of Health Economics at the University of Pennsylvania and a postdoctoral fellow at the Center for Health Outcomes and Policy Research at Penn’s School of Nursing.