President & CEO
United Spinal Association
President Biden’s pandemic recovery plan correctly positions caregiving as an essential building block of our economic future. His plan has the potential to transform the future for people with disabilities and the essential workers who assist them in their homes and communities. As a leader of an organization of 58,000 other Americans with spinal cord injuries or disorders (SCI/D), I am convinced a better care system is a medical and economic necessity for America’s future.
I am a paraplegic. Last year, after working in the private sector for 25 years, I became CEO of United Spinal Association. Our membership includes both paraplegics and quadriplegics, the vast majority of whom use wheelchairs. Quadriplegics, with higher-level spinal cord injuries than mine, have limited upper-body mobility, strength and manual dexterity. Many quadriplegics require a personal care attendant to assist them in activities of daily living such as bathing, dressing, and eating. With that support, they can live as independently as possible in the community, enjoy friends and family, and also work and pay taxes.
This population is part of a much larger group of people in this country who live with disabilities. The Centers for Disease Control and Prevention reports that 61 million American adults, or 1 in 4, have disabilities. However, programs such as Medicare and Social Security Disability Insurance (SSDI) do not provide for us to receive care in our homes and communities.
Medicaid does, but only for adults with low incomes. Many states have waiting lists for Medicaid home care, and it’s common to be on a waiting list for years. The Affordable Care Act (ACA) eliminated a major obstacle to work for people with disabilities, when it outlawed preexisting condition exclusions and waiting periods for health insurance. People with disabilities afraid of losing Medicaid coverage by going to work had their disabilities and related illnesses covered immediately by ACA—an Emancipation Proclamation for us. However, for those needing a personal care attendant, the poverty requirement is still a barrier.
This inadequate benefits system can break up families. Relatives often become uncompensated caregivers to their loved ones. Furthermore, nursing home admission may be the only alternative, even for people with disabilities who would prefer to stay in their homes and communities. Yet, such care both costs the government more and prevents people with disabilities from earning a decent income. President Biden’s plan to invest $400 billion in caregiving over 10 years would dramatically increase the reach of Medicaid home and community-based services to all who need them.
Equally important, the Biden plan develops a homecare workforce to meet the needs of the disability community now and in the future. Home care aides, long underpaid, overworked, and lacking training, have become scarcer during the pandemic. For decades before COVID-19, this country has allowed homecare to be employment of last resort.
Prioritizing funding homecare could have a twofold impact on the fabric of the American workforce. Homecare workers — typically women, women of color, and immigrants — are necessary to the independence of seniors and people with disabilities. Biden’s plan recognizes these workers as the cornerstone of our economy — without their work, others would have to reduce or eliminate their own work hours to provide care. Biden’s plan increases these workers’ pay, provides child care and paid family and medical leave, and offers educational benefits to improve professional skills. Moreover, for many workers with disabilities, personal care is a precondition for employment. Biden’s plan would be an important first step for increasing the worker pool and the number of hours of homecare services available to people with disabilities and seniors.
Looking to the future, it is desperately necessary to address the needs of working people who need personal care. In order to tap the potential of people with severe disabilities, it is time for Congress to uncouple assistance that facilitates work and community living from subsistence-level poverty. It’s the fair thing to do.
A brilliant quadriplegic could make life better for us all by, for example, curing disease, writing the great American novel, or inventing labor-saving devices—if caregiving is assured. Why not presume people with disabilities can also work with the right support? The money saved in federal benefits that would otherwise go to nursing homes could pay for personal care services that enable people with disabilities to live the American Dream.
In 1990, with both the left and the right agreeing that everyone who can work should, Congress passed the Americans with Disabilities Act (ADA), outlawing discrimination on the basis of disability and requiring accommodation. In 2010, the ACA provided healthcare to workers with preexisting conditions. The recent passage of the Build Back Better legislation will be the next major milestone in fighting discrimination against people with disabilities and facilitating community living.
