Annual Thanksgiving traditions in American households present an opportunity for giving thanks for the love and support of our family members. As a nation, we should also pause to consider how we give thanks to those at our family tables who are part of the nearly 44 million caregivers for parents, spouses, siblings, children and others with disabilities in their families. Without this critical unpaid workforce, older adults and people with disabilities would not have the same freedom and liberty as everyone else – the right to live, learn, work, worship and thrive in their own homes and communities.
Recent studies show our country’s reliance on family caregivers to safeguard these rights may be reaching a breaking point. In 2013, informal caregivers who helped individuals with disabilities overcome everyday obstacles (including feeding, bathing, dressing, administering medications, transportation, and other daily activities) provided $470 billion worth of care. Seventy-five percent of adults with intellectual and developmental disabilities live with their aging parents or other family members. Half of these caregivers are older than 50, and ten percent are 75 or older. These aging caregivers need our support to address their concerns about the future, including what would happen to their loved one when they die or are no longer able to provide care.
In addition to unpaid family members, more than 1.4 million home health care professionals provide essential caregiver tasks. Currently, the professional home health care workforce is unprepared to meet the emerging gaps created by an aging family caregiver network. According to the Bureau of Labor Statistics, the demand for home health and personal care aides will far outpace the current rate of growth. Jobs home health aides and personal care aides is projected to grow 41 percent from 2016 to 2026, much faster than the average for all occupations. However, low wages and difficult work make this occupation less desirable to a modern workforce.
It is fitting that President Trump recognized the vital role family caregivers provide in proclaiming November 2018 as National Family Caregivers Month. In this spirit of gratitude, Congress and the Administration should recommit to building the resources and support the caregiver workforce desperately needs.
The good news is that the Administration for Community Living administers federally funded State Developmental Disabilities Councils and other grantee organizations to support family caregivers of individuals with developmental disabilities across the lifespan. Congress plays a significant role in the funding of ACL and these critical programs. In addition, Congress authorizes and funds the Lifespan Respite Care Act, the National Family Caregiver Support Program, and Family Support funded under the Developmental Disabilities Act. Most recently, Congress authorized and funded the RAISE Family Caregivers Act, which establishes a commission to look at how we can do better in addressing the needs of caregivers. The RAISE commission has an opportunity to address how to meet the needs of people who depend on caregivers as this informal workforce ages.
I am grateful to the President, Congress, ACL and many partners in the aging and disability community that recognize the need to support our nation’s caregivers this month. Let us take that momentum into the next Congress and work in a bipartisan way to support programs that will give family caregivers the support they need and build our professional caregiver networks to meet the needs of people with disabilities and their families.
