U.S. Senators Shelley Moore Capito (R-W.Va.) and Ed Markey (D-Mass.) have introduced legislation at the federal level that would require the Centers for Medicare and Medicaid Services (CMS), Social Security Administration (SSA), and Children’s Health Insurance Program (CHIP) to review their eligibility, processes, procedures, forms, and communications to reduce the administrative burden on family caregivers in Colorado and across the nation. Their bill is titled the Alleviating Barriers for Caregivers (ABC) Act.
The brief introductory text of the bill says its intent is to assist individuals in establishing eligibility for, enrolling in, and maintaining and utilizing coverage and benefits under the above-mentioned governmental support programs. The legislation would then annually require CMS, SSA and CHIP to report to Congress about any issues they are facing and any next steps they are taking to support family caregivers.
Among the Key Line-Item Goals Stated in the Bill are the Following:
- Simplify and streamline policies and procedures for determining eligibility for, enrolling in, maintaining coverage in, and utilizing the full benefits available under the covered programs
- Reduce the frequency of family caregivers having to provide the same information to relevant agencies more than once or complete multiple documents for each agency
- Eliminate documents requesting the same or similar information for multiple agencies or that the agencies already have
- Make it easier for family caregivers to work with the agencies, including state agencies responsible for administering state Medicaid and CHIP plans
- Improve communications between family caregivers and employees of agencies by decreasing call wait times and ensuring that agency employees provide timely answers to the questions of family caregivers
- Improve timely access to in-person appointments or meetings between agency employees and family caregivers
- Ensure that agency employees understand how their programs can help family caregivers
- Ensure that employees of agencies who are responsible for resolving disputes, appeals, and grievances within programs receive education, training, and guidance on specific issues faced by family caregivers who participate in the programs
- Improve the websites of the programs by making it easier for family caregivers to find information regarding benefit availability, eligibility, and how to maintain coverage and by designing such websites to align with the requirements of the Americans with Disabilities Act
- Provide translation or interpretation services for family caregivers for whom English is not their primary language and provide information in accessible formats, including formats compatible with American Sign Language.
The draft bill also stipulates that in conducting the required reviews of the programs, officials shall seek input from family caregivers who have interacted with the programs and state, regional, national, and tribal organizations representing or working with family caregivers or individuals receiving care from family caregivers.
Finally, the bill also requires that officials who have reviewed programs with the goal of simplifying and streamlining policies and procedures must report to Congress the results of their respective reviews. These reports are to include issues that officials identified in the reviews and the actions they are taking to address them, plus a projection of when such actions will be completed. These reports are to be made available to the public.
Caregivers Seen as Serving on the Frontlines
“As a caregiver for my parents during their struggle with Alzheimer’s disease, I know personally the level of responsibility put on family caregivers and the burdens, which can be created by federal process and procedure,” Senator Capito said. “Caregivers across our country put family first and balance multiple priorities at once, which is why we must do all we can to alleviate roadblocks that could delay and even prohibit them from receiving the support they need.”
“When my mother suffered from Alzheimer’s, my father was her caregiver in our home,” Senator Markey said. “Caregivers serve on the frontlines of our nation’s health care system by giving our families and friends the care and support they need to remain in their homes and communities with their loved ones. However, our aging and disabled community members can’t get the care they need if their caregivers — the backbone of their treatment — are struggling to navigate complex, burdensome, and stressful processes each and every day while also still managing day-to-day family and professional responsibilities.”
The Alleviating Barriers for Caregivers Act is cosponsored by Senators Kyrsten Sinema (I-Ariz.), Susan Collins (R-Maine), Bob Casey (D-Pa.), and Thom Tillis (R-N.C.).
The Caregiver Picture — in Colorado and Nationally
Family caregivers are the primary source of support for seniors and people with disabilities of all ages. In the U.S., there are more than 48 million family caregivers. AARP, an AgeWise Colorado Provider, said its research shows that in 2021, 600,000 family caregivers in Colorado provided 560 million hours of unpaid caregiving valued at an estimated $11.2 billion. Also, its survey of 700 Colorado residents age 45 and up found that fully two-thirds were providing unpaid care to an adult relative or friend or had done so in the past. The need for family caregivers is only expected to grow, AARP said, because census data shows the number of Coloradans age 65 and older increased by nearly 60% between 2010 and 2020 while the population as a whole grew by about 15%.
More than half of family caregivers act as an advocate for their loved one with care providers, community services, or government agencies. One in four of these family caregivers say they want help with forms, paperwork and eligibility for services — the issues the ABC Act seeks to address.
A 2023 AARP survey of 1,000 U.S. adults who were currently providing unpaid care for an adult loved one or had provided care in the last three years underscored the fact that the stress of family caregiving has only gotten more complex. The survey found that that the nation’s adult family caregivers have to take steps daily to attend to their own physical, emotional and mental well-being.
Strategies Caregivers Use to Manage Stress
Caregivers look to different strategies to handle their stress. For one wife in AARP’s survey who cares for her 82-year-old husband with Parkinson’s disease, this means pre-sunrise moments of personal self-care such as exercising, showering, applying makeup and putting on an upbeat outfit that helps her feel like something more than the family caregiver. She also relishes the quiet time she has for this regimen, however limited it may be. She is adamant that such self-care is not selfish, but rather necessary.
Other self-care strategies respondents in the survey reported using were listening to music, talking to friends or family members, meditation and breathing exercises, taking prescription meds, attending therapy or support groups, and accessing respite care. The survey also found that overstressed caregivers are mostly women, whose caregiving responsibilities include everything from cooking to driving to assisting their loved ones with activities of daily living — from dressing to showering to toileting. Half of caregivers said caregiving increased their level of emotional stress, and more than one-third said it impacted their physical feelings of stress. Female caregivers experience more stress and anxiety than their male counterparts; and younger caregivers (under 35) have more emotional challenges than older caregivers, with higher levels of anxiety. Four in ten caregivers report they rarely or never feel relaxed.
Caregivers with Multiple Stressors
AARP went on to note that some 61 percent of family caregivers also hold down jobs. Another 30 percent have children or grandchildren in their home. “Not only are family caregivers unpaid,” AARP observed, “but the typical caregiver spends more than $8,000 out of pocket annually on caregiving. And perhaps most stressful of all, 6 in 10 are regularly being asked to perform medical procedures — such as monitoring blood pressure or giving injections — that they might not be trained to do.”
“You don’t think you have time for your own medical needs and mental health support when you’re spending so much time taking care of others,” says Charlotte Yeh, chief medical officer for AARP. That is wrong, she says. Family caregivers must learn to care for themselves first and foremost. Senators Capito and Markey say their ABC Act could help caregivers care for themselves by easing administrative burdens and clearing away red tape that get in their way.
On the plus side, Yeh said family caregiving has an unusual benefit: she says 80 percent of caregivers report feeling a sense of purpose. “The act of caregiving not only gives most folks a sense of well-being,” she says, but if they also take care of themselves, this can reduce the caregiver’s risk of hospitalizations and lower mortality risks.
For additional information on issues affecting caregivers as well as programs and services that can help, check out a series of articles on our AgeWise Colorado website. On our homepage simply click on the magnifying glass symbol, type ‘caregivers’ in the search field that pops up and hit Enter.