Ron SmithPublished on Saying "Thank You" to Caregivers!
“The system for helping people who can no longer care for themselves is broken and costly.” (Jo Ann Jenkins, CEO AARP, May 3,2022, AARP Bulletin, p 32) This report is also available online at: The Long-Term Care Crisis and How We Can Fix It (aarp.org) This is a very important fact because “Nearly 70 percent of American who reach age 65 will someday require help from others to get through their day. On average women will need help for 3.7 years, and men for 2.2 years. ” Unfortunately, the system by which we provide these needed services is deeply flawed.
The fact is that only a small number of Americans have the resources necessary to obtain whatever long-term health care needs might occur. Medicaid has programs for those who qualify on the other end of the economic spectrum that can provide a bed, food, nursing care and enough support to live with a modicum of dignity and comfort.
The problem lies with “the gigantic middle” as termed by Nancy LeaMond, AARP’s chief advocacy officer. They include the large majority of Americans who can’t qualify for Medicaid or cash-flow their own caregiving either at home or in an institution. Their care is likely to come from an unpaid family caregiver. The numbers are staggering – some 53 million Americans of all ages devote a portion of their day to this support. More than 1 in 5 Americans are caregivers and 61% of them are also working.24% of these caregivers are caring for more than one person.61% are women and at least 45% of them have suffered at least one financial impact. With 10,000 boomers continuing to turn 65 each day until 2030, the need for unpaid family caregivers can only increase.
The toll on these caregivers is often very great because of the flaws in the support systems that they turn to for assistance. The support needed from employers, government or the healthcare industry often falls very short of what is needed or is so complicated to obtain that it is virtually non-existent This is further complicated by the basic nature of what often happens when a medical crisis occurs since there is usually no roadmap for guidance and limited time for planning. Family members get thrown into a bit of chaos trying to change schedules, make adjustments to a home, preserve their career or arrange finances. Most family caregivers have very little training or experience to deal with the new set of tasks that they now face.
The Federal government provides lots of support. The Older Americans Act of 1965, was initially passed and signed into law by President Lyndon B. Johnson in 1965 establishing the U.S Administration on Aging (AoA). Since then, the Federal government has sought to help older people maintain maximum independence in their homes and communities with a continuum of care for the vulnerable. Most of these services are delivered through State and Area Agencies on Aging to address services at the community level. Locally, the Pinal-Gila Council for Senior Citizens (Arizona Area Agency on Aging, Region 5) does a great job of providing services and programs to county residents and would be a great place for initial inquiries on services available. Although there are many services potentially available, they are not going to reimburse a caregiver for the salary lost or out of pocket expenses incurred. The average family caregiver often works an average of 24 hours per week providing homecare. A June 2021, an AARP study found that 78 percent of family caregivers incur personal expenditures of more than $7,200 per year. Often there is no one to provide respite for these caregivers and their personal health can decline significantly. Rarely do they receive any training on how to provide proper homecare support. Yet, they are carrying the medical support system on their backs.
In 2018, Congress passed the bipartisan Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act and it was signed into law by President Trump. The RAISE Family Caregivers Act directs the Secretary of Health and Human Services to develop a national family caregiving strategy. The strategy should identify actions that communities, providers, government, and others are taking and may take to recognize and support family caregivers.
On September 22, 2021, the 30-member RAISE Advisory Council released a report based on two years of assessing the current patchwork of federal efforts to support family caregivers. They released recommendations for meeting five core goals:
- Expand outreach and education for family caregivers and public awareness of the needs and challenges they face.
- Engage caregivers as partners in providing health care and long-term services and supports for their loved ones.
- Improve access to services and supports such as respite care, counseling and transportation assistance.
- Ensure financial and workplace security for family caregivers.
- Generate research, data and evidence-based practices to develop policies and programs that meaningfully help caregivers.
Possible popular topics that may eventually come under consideration for improving the support for caregivers might include: 1) The Family and Medical Leave Act (FMLA); 2) Tax credits for caregiving; 3) Expanded home care and community services; 4) Building a long-term care workforce; 5) More home care options through Medicare; 6) Expanded teleconferencing capabilities; 7) Expanded home monitoring and treatment technologies, such as, remote patient monitoring (RPM); and, 8) Expanded transportation options. Many of these ideas are already being promoted at the national and state levels by AARP.
Of course, most of these suggested improvements are at the mercy of Congress to fund, but there are pockets of change emerging around the country with state and private sector entities reacting to the fallout from their experiences with COVID-19. In addition, some of the monies provided to states under the American Rescue Plan Act (ARPA) might find its way into improved caregiver support.
Try to read the above-mentioned AARP Special Report. It is definitely an eye opener and raises some serious concerns that need to be considered. If you have been reading my articles you know that I promote a safe and comfortable living environment that can support aging-in-place. But even with that, it is likely that you will need the help of a caregiver at some point. The logistical and financial considerations should be considered by you and your family in advance before an unexpected health crisis turns your world upside down. You may want to monitor the progress that the RAISE Act makes in providing help for family caregivers. In the meantime, we need to deeply thank the millions of unpaid family caregivers who endeavor to provide the daily, loving support needed by our family members.
Ron Smith is a living-in-place advocate, a member of the Age-Friendly Maricopa Advisory Committee, a Certified Aging-in-Place Specialist (CAPS) and a Certified Living in Place Professional (CLIPP™)
