On January 22, 2018, the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act was signed into law by President Donald Trump after having passed the U.S. House on December 18, 2017 and the U.S. Senate on January 8, 2018 with overwhelming support. Autism Speaks is thankful to the bill’s original co-sponsors: Senators Susan Collins (R-ME), Tammy Baldwin (D-WI), Lisa Murkowski (R-AK) and Michael Bennet (D-CO) as well as Representatives Gregg Harper (R-MS-3), Kathy Castor (D-FL-14), Michelle Lujan Grisham (D-NM-1) and Elise Stefanik (R-NY-21) for their bipartisan leadership. The legislation is the first step to creating a national strategy to support family caregivers.
The Impact of the RAISE Family Caregivers Act
The RAISE Family Caregivers Act supports the millions of family caregivers in the United States, the individuals who rely on them, as well as the economy and workplaces who benefit from their contributions.
The law directs the Department of Health and Human Services (HHS) to develop, maintain, and periodically update a national family caregiving strategy. As a result of the RAISE Family Caregivers Act, HHS will convene a Family Caregiving Advisory Council to develop the national family caregiving strategy. The advisory council will include at least one family caregiver, an older adult with long-term support needs, a person with a disability, a health care provider, a long-term service and support provider, an employer, a veteran, state and local officials, and the heads of other relevant federal agencies. Autism Speaks looks forward to working with HHS and the Advisory Council as they develop the national strategy and welcome further conversations on how to meet family caregivers' needs.
Importance of Family Caregivers
Family caregivers are one of the most important sources of support for people with autism. Family caregivers provide an average of 18 hours a week caring for their loved one, with almost one-third of family caregivers providing an average of 62 hours of care a week. They help with an array of activities including eating, bathing, dressing, managing finances, performing medical/nursing tasks, managing multiple and complex medications, coordinating care among multiple providers and settings, and paying for services to help their loved ones such as home modifications, transportation, or a home care aide. The assistance family caregivers provide saves taxpayer dollars, helps delay or prevent loved ones from needing more costly care, and prevents unnecessary hospital readmissions.
In 2013, about 40 million caregivers provided unpaid care valued at $470 billion to loved ones who need help with daily activities. That sum was more than the total Medicaid spending in the same year. According to Caregiving in the US 2015, about 3.7 million family caregivers provided care to a child under age 18 because of a medical, behavioral, or other condition or disability, and 6.5 million family caregivers assisted both adults and children. Estimates show 3.5 million individuals with intellectual or developmental disabilities (I/DD) live with family caregivers, of whom over 850,000 are age 60+.
With such a demand from family caregivers, these caretakers face a cost to their own well-being. In juggling personal health, work, and caregiving responsibilities, many caregivers make workplace accommodations, including leaving their jobs. Family caregivers (age 50 and older) who leave the workforce to care for a family member lose, on average, nearly $304,000 in wages and benefits over their lifetime. These estimates range from $283,716 for men to $324,044 for women. In addition, family caregivers may pay out-of-pocket for services whose costs add up over time.
The need to support family caregivers is greater than ever as predictions show that the increasingly older population has led to the ratio of caregivers to people needing care to shrink over the next few decades. While there were seven caregivers for each person needing care in 2010, by 2030 there will only be four and by 2050, just three.