November is National Family Caregivers Month, a time to recognize and honor the millions of family caregivers across the U.S. who provide loved ones with assistance in the activities of daily living such as bathing, dressing, or cooking; or medical tasks like managing medication and monitoring symptoms. It is physically and emotionally demanding work that can also exact a financial toll since it is largely uncompensated.
As the federal Administration for Community Living notes, “Many caregivers work and also provide care, experiencing conflicts between competing responsibilities. Research indicates caregiving also takes a significant emotional, physical, and financial toll. With nearly half of all caregivers over age 50, many are vulnerable to a decline in their own health.”
We are proud of the work we do serving adults living with intellectual and developmental disabilities in our community residences, staffed apartments and shared living homes. But the fact is that family members are the primary source of support for most people living with disabilities. According to a 2020 report from AARP and the National Alliance for Caregiving, more than one in five Americans—53 million people—are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. That’s up from 43.5 million caregivers in 2015. Women make up the majority of family caregivers—61 percent compared to 39 percent for men.
The swelling ranks of family caregivers are also caring for people who are living with more complex needs than those from just 2015. According to the report, there was an increase in the percentage of people who reported providing care for adults with long-term physical conditions (63 percent, up from 59 percent in 2015), emotional or mental health issues (27 percent, up from 21 percent), and memory impairment (32 percent, up from 26 percent), including Alzheimer’s or dementia (26 percent, up from 22 percent in 2015).
More concerning is the observation by the report’s authors that caregivers appear to be doing this work “without adequate and affordable services and supports in place.” For example, they note that despite the increasing complexity of care recipients’ conditions, overnight hospitalizations decreased from 53 percent in 2015 to 48 percent in 2020 and less than a third of caregivers report that their recipient has any paid assistance.
It’s for reasons like these that HopeWell works as closely and collaboratively as we can with the family and loved ones of our residents who are living with developmental disabilities. They are important participants in the continuum of care we provide because they know our residents best. In some instances, their caretaking and support of our work extends beyond the needs of their own family members, such as when the brother and legal guardian of one of our residents—along with his wife—donated money to pay for ice-cream when residents of our Mt. Vernon Community Home took a trip to Maine this past summer.
Because we recognize the importance of family caregivers in the lives of our residents and the effectiveness of our programming, HopeWell supports policies aimed at supporting family caregivers. We’re pleased, for example, that both Massachusetts and Connecticut have both passed paid family medical leave laws that allow workers to receive paid time off to provide care for a loved one who is ill, an important safety for caregivers who occasionally need time off due to emergencies, medical appointments, and gaps in paid care. (We do wish that Connecticut’s law, which offers 12 weeks of paid leave, was as generous as Massachusetts’ 26-week provision.) But a federal paid medical leave bill would ensure that workers across the country would enjoy such support during times of crisis—particularly those from families coordinating care across states.
In a recent op-ed, Jesse Mermell, the former president of the Alliance for Business Leadership, encapsulated the problem a federal paid leave law would solve with an example from her own life:
My father has stage four prostate cancer. It has metastasized to every vertebrae in his spine. He is in pain every single day, ranging from excruciating to manageable. I live and work in Massachusetts. My parents are in Florida. My brother is in South Carolina. My aunt and cousin are in Baltimore. Like so many American families, we are scattered across the country. Massachusetts having PFML is wonderful, but that doesn’t make it easier for my brother to help care for Dad and support Mom.
A national paid leave program would allow a son in West Virginia to take time to care for his sick mother in Arizona, or a father in Montana to be there for an ailing daughter in Pennsylvania, all without fearing financial ruin. National PFML would let families focus on healing, no matter where they or their loved ones live.
We also want employers to be more fair and flexible when it comes to scheduling employees’ work hours. Caregiving is often unpredictable and a flexible work schedule can mean the difference between a caregiver/breadwinner keeping a paying job or becoming unemployed.
Similarly, we would also like to see more jurisdictions enact anti-discrimination laws that protect workers from being penalized or harassed at work because of caregiving duties, as New York City did in 2016. The law makes it illegal to discriminate against workers because they have caretaking responsibility for children under age 18, including foster or adopted children; family members who are sick or have a disability, and any other person who lives with them and depends on them for medical or daily care.
As the pandemic has forced a reckoning about Americans’ relationship to work and work-life balance and the population of those needing assistance from formal and informal caregivers continues to grow, the time is ripe for measures that will ensure support for family caregivers, who give so much but get so little relief.