Think the Americans with Disabilities Act is Working? Think Again.

It’s no secret that services for people with disabilities have long suffered from a shortage of support staff. Since the pandemic, that support has become a crisis. Nationally, policy makers and disability providers have sought creative solutions to a growing problem. One of the most promising solutions is paying family members to provide the care historically provided by professionals.

Family Caregivers are receiving a lot of national attention as an effective means of providing care to people with disabilities. A recent study in the Journal of Pediatrics compared the outcomes of care between CAN-trained family members and non-familial CNAs. The results showed equal quality of care, but the family members had more stability and longevity. They were also usually paid less than non-familial CNAs, a savings to state programs, but clearly to the detriment of family members.

The study was based on findings from a program through Colorado Medicaid. Colorado has long been a leader in the use of family caregivers. The program in the study has been around for over twenty years and is designed as an alternative to hospitalization for children with disabilities and complex medical needs. In 2010, Colorado expanded family caregiver options and extended it into many of its Medicaid long-term services and support programs for both children and adults. This expansion also allowed families to provide a wider range of services beyond those traditionally performed by skilled and licensed professionals.

In an age of widespread staffing shortages, family caregivers can be the alternative to long waiting lists and lack of essential support. But this isn’t a solution for everyone.

Family caregiving works well if family members are available, willing, and able to provide the needed care. This isn’t the case for everyone with a disability, especially for disabled adults. As we age, family members may be less available to provide care. This might be due to their own health care needs or the need to work in a career that can better sustain them. Disability service providers are notoriously underpaid for their work, including when the provider is a relative.

And not every disabled adult wishes to receive support from a family member. It can mean a loss of autonomy and choice and a barrier to independent living.

Yet at least we have the option in Colorado. In many states across the United States, relatives still are not allowed to be paid for the care they provide. In the past month, announcements from the White House and the federal Department of Health and Human Services have targeted barriers to accessing family caregiving. As a result, we expect to see a trend of increased family caregiving across the country. In the meantime, we should all consider family caregiving as an option. One in five Americans has a disability, and there is a high chance that you or a loved one could someday need support. Planning ahead for what that support would look like puts you in a better place when the time comes.