Caregivers Need More Than a Day of Recognition | Patient Perspectives

This blog was authored by Mindy Cameron. Mindy is a member of Medidata’s Patient Insights Board. Her mother required home healthcare services and support for nearly 20 years following a catastrophic brain injury at age 64. Her father provided most of her mother’s care until he reached his mid-70s and began suffering from debilitating lung disease. Mindy and her husband Alex now share primary caregiving responsibilities for their 20-year-old son who lives with Duchenne muscular dystrophy.

Setting aside a day to recognize caregivers is a fine and welcome gesture. But is it enough to designate the third Friday of every February as National Caregivers Day and call it “awareness”? Caregivers in the United States have long needed financial, emotional, and physical support, but it took until 2016 to formally acknowledge their work with a National Day of Recognition.

“Beyond recognition, what caregivers truly need is more public understanding of the issues that have created a huge—and largely unrecognized—national crisis.”

– Mindy Cameron, Patient Advocate, Medidata Patient Insights Board Member

There was a glimmer of hope when President Biden included a massive budget increase aimed at alleviating challenges that states have in funding, implementing, and staffing their programs for home and community-based services and supports. Political arguments, including different ideas about what constitutes national infrastructure, prompted these provisions to be cut. Once again, caregivers were left behind—their issues dismissed as not important enough or too expensive to fix. It is disappointing that such an important concern that directly affects so many of us is repeatedly ignored.

Wages, benefits, and working conditions for professional home healthcare workers are some of the issues in need of a fix. These vary somewhat, but the national average hourly wage for home healthcare workers is under $13 per hour. At approximately $27,040 per year, it is clear why there is a national shortage of these vital workers. 

For many of the millions of Americans providing full-time home care for their own elderly parents or disabled children, there are no salaries, no benefits, and no time off. This lack of compensation is often coupled with the loss of income and benefits from a job or career abandoned due to caregiving responsibilities. Family members providing round-the-clock, long-term care for loved ones often endure social isolation and depression with little or no breaks. This already difficult situation was made worse by the COVID pandemic, as caregivers tried to keep their loved ones with compromised health safe by calling off any outside respite care that they may have had in place.

Medicare pays for some home healthcare for the elderly and a limited number of disabled adults. But numerous restrictions on hours and services, coupled with the shortage of professional home healthcare providers, prompts millions of Americans to take on unpaid caregiving roles to prevent their loved ones from being forced into nursing homes. Physically or developmentally disabled children and adults have state-provided funding for home healthcare needs through Medicaid and the use of Home and Community Based Services (HCBS). These services waive the requirement that state-funded care be provided through live-in facilities like group homes or nursing facilities. 

While this system sounds good in theory and may work in some states, the federal government does not require states to provide federally-funded home healthcare service benefits for all those who qualify. Most states then control program spending by placing caps on available HCBS slots, limiting the types of services they provide—and sometimes narrowly specifying the populations they serve.

According to the 2018 fiscal report by the Medicaid and CHIP Payment and Access Commission (MACPAC), which provides advice to Congress on Medicaid issues, 41 of 51 states (including Washington, DC) reported having an HCBS waiver waiting list for at least one population, with total waiting list enrollment of 819,886 and an average wait time of 39 months. 

These problems illustrate the national caregiving crisis. While politicians fight over how to correct the course, caregivers continue to suffer without support and understanding. On National Caregivers Day, it would be wonderful if everyone reached out to a caregiver they know to offer support. As thoughtful as prayers and admiration are, consider going a step further. Take over a meal, offer some respite time, or schedule a meeting with a state or federal government official to discuss the issues. Count yourself among those working for change, for you may find yourself in a caregiving role one day in the future.