The Center for Medicare Advocacy is pleased to periodically provide guest posts on issues related to our work, including the need to address the long-term care crisis in our country. This article, from Ronald Phillips of Waldoboro, Maine, discusses family caregiving and makes a case for a bill that would provide tax credits for family caregivers. The challenges of long-term care are many and multifaceted. While not a comprehensive solution, this post discusses one approach that could help people who have a taxable income.
CMA Founder Judith Stein served on the Federal Long-Term Care Commission in 2013. Here is a link to the Alternative Report issued by several of the members of this commission, outlining the scope of the long-term care crisis and potential solutions: https://www.medicareadvocacy.org/wp-content/uploads/2013/10/LTCCAlternativeReport.pdf.
Family Caregivers – An Untapped Resource
By Ronald L. Phillips
Over a recent five-year period, I was a family caregiver in Maine 24/7 for my spouse of 62 years. She had been diagnosed with cancer and other cognitive and ambulatory afflictions. Things turned for the worse as our lives morphed from daily walks and joys, to falls, ER visits, wheelchairs, and finally, pain management and end-of-life.
I’m writing to share my personal caregiving experience and views on family caregiving. Fortunately, I had retired and was able to devote myself full-time to my spouse’s care. It was on-the-job-training, frankly, guided by common sense and love, but also technical support, with methods of care gleaned from doctors, nurses, caregivers, and palliative and hospice dispatched from MaineHealth, along with web searches, and consuming a plethora of self-help articles and books about family caregiving.
Along the way I experienced the full range of responsibilities for ADL – Activities of Daily Living – the medically-defined host of tasks broken down into “Personal Care” including hygiene, feeding, dressing, mobility – and to what is referred to as “Instrumentalities” or IADL – that include more complex activities from managing finances, medication, and overall household tasks, to driving, shopping, communications with family and the outside world, and various activities.[1] We counted our blessings, and are grateful to the many doctors, nurses and home care workers who helped and compassionately advised us on our journey.
In retrospect, and subsequently signing up as a volunteer with AARP Maine, a highly professional office of the formidable AARP National, founded in 1958, I quickly learned I had been one of many family caregivers in the United States engaged in similar duties, at one level or another, caring for a loved one. The refrain today is to “age in place,” holding off as long as possible from institutionalization in an assisted living, Alzheimer’s, or nursing facility. Organizations like AARP, with its state-based offices, are advocating for ways to support and bolster the role of family members in caring for a loved one at home.[2]
The entire nation is aging as “baby boomers” are entering their later years in droves. A comprehensive study by AARP and the National Alliance for Caregiving paint a picture of the state of Caregiving in the U.S. 2025. They estimate that some 63 million adults provide care for children or other adults, including 59 million of these who cared for an adult with a “complex medical condition or disability.” Maine itself has the oldest elderly population in the nation, with 23 percent of the state’s 1.4 million residents who are 65 or older, and it’s growing.[3] AARP Maine reports that 324,000 people or 28 percent of the state’s population is involved in the care of a loved one [4]
Three ways come to mind augment a family member’s role in caregiving. First is to agree that family caregivers are, indeed, an untapped asset, and an efficient investment for a loved one to remain in the home as long as possible. Caregiving is a complex, often patchwork of tireless to nuanced oversight of a loved one’s care, whether an elder, a child, or an individual with developmental challenges or other conditions. In March of this year, in an updated analysis, Valuing the Invaluable: 2026 Update, AARP’s Public Policy Institute noted that family caregivers…
…provide the majority of long-term services and supports in the United States, assisting adults with disabilities and complex health needs with daily tasks of living, complex medical and nursing tasks, and coordination of medical and social services—nearly all without pay…(and that) that the 59 million caregivers of adults provided 49.5 billion hours of care in 2024 at an average value of $20.41 per hour. This sums to a total economic value of $1.01 trillion for all adult caregiving in 2024.[5]
Truly both the “unpaid” literal and figurative “labor of love” is at work when a family member steps in to care for a loved one.
A second point is that in the caregiving landscape, direct care workers – a paid segment of the caregiving infrastructure – are typically underpaid and overworked. With “burnout” and high turnover, and despite their compassion and dedication, it’s no wonder there’s a shortage. According to a 2024 study on the potential benefit of investing in direct care workers by the bi-partisan, nonprofit research group, the Maine Center for Policy Priorities, Closing the Gap: Maine’s Direct Care Shortage and Solutions to Fix It, Maine is facing an estimated ten percent or a 2,300 shortage in direct care workers.[6]
To offset the direct care worker shortage, wages (and reimbursement rates) need to be brought in line with the hard work involved among providers. There was a recent legislative effort in Maine to increase wages to 140 percent of the state’s minimum wage of $15.10/hour from its current 125 or $18.75/hour, less than what a McDonald’s wage might start at. This would have brought the starting wage up to $21.14/hour. Given budget constraints and competing needs, the increase failed but was replaced by a modest three percent COLA (Cost of Living) raise.
Direct care workers are a vital part of the infrastructure of care giving, and what’s referred to as a “living wage“ – which varies by state and regions within states – needs to be prioritized. The Massachusetts Institute of Technology’s (MIT) popular Living Wage Institute has developed a calculation to reflect a state’s and region’s pay to meet the necessities for a basic standard of living – housing, food, health, education. Even these costs are outpacing the average earner. Working 2080 hours/year the wage at 140 percent would have risen to $21.14/hour, still shy but closer to MIT’s living wage calculation of $24.74 for an adult in Maine to attain a basic standard of living.[7] By my calculation, a salary of $44,000/year plus health and other benefits is the least our society should come up with in support of the compassion and dedication of these workers.
Agencies like the so-called Triple AAAs, Area Agencies on Aging – contend with workforce challenges every day. USAging, in Washington, DC, is a coalition of these state-based agencies.[8] Understaffed and constrained by limited budgets, these agencies nevertheless play a critical role “on the ground” caring for low-moderate income elderly and ability to age in place. Making the starting wage closer to the living wage would help stabilize the direct care worker role and potential for a career.
A third way to strengthen the family member role is to provide direct financial support and relief to the caregiver themselves for out-of-pocket – a spouse, a family member, a relative. This could take the form of a tax credit applied to a family caregiver’s federal taxes. How would a tax credit work? More than a dozen states have initiated or are considering some form of a non-refundable tax credit. The value of the credit varies, with the highest at a modest $3,000, though one state proposed a $15,000 credit.[9] In 2020 Maine introduced a non-refundable tax credit but converted it to a 5-year refundable pilot program during the COVID period for very low-income filers who did not have a federal tax liability.[10]
A federal model for a broad tax credit was first introduced in 2016 and was most recently reintroduced in March 2025 by Representative Mike Carey, a Republican from Ohio, and Senator Shelley Moore Capito, a Republican from West Virginia. The bill has several bi-partisan sponsors, and according to AARP, over 100 organizations have signed a letter in support of the legislation. To help offset a portion of caregiving expenses, the bipartisan Credit for Caring Act of 2025 (H.R. 2036, and S. 925)[11] would provide a non-refundable federal tax credit of up to $5,000 for eligible working family caregivers for 30 percent of qualified expenses that align with the basic categories of caregiving. Such qualified expenses could include assistive technologies and remote health monitoring, adaptive equipment, ramps and possibly wheelchairs, incontinence supplies, transportation, and medication management, as well as credit for outlays for a home care aide or counseling for the eligible caregiver.
The non-refundable credit would kick in once the eligible caregiver spent $2,000 on eligible items. The filer would have to have at least $7,500 of earned income to be eligible for the credit. The caregiver could potentially spend up to an additional $16,667 for qualified expenses to access the maximum credit of $5,000. The tax credit would start to phase out for those filing a joint return at $150,000 modified adjusted gross income and $75,000 in any other case. At a median national cost of $80,000/year for a full-time, non-medical caregiver in the home, or $74,000 in an assisted living facility, or $114,972 for a semi-private room in a nursing facility, this modest financial relief is a fraction of the cost given that the family caregiver is, for all intents and purposes, unpaid.[12] And the family member being cared for is at home.
There are multiple paths that can reinforce the family caregivers’ role in caring for a loved one. Coming to terms with investing in direct care workers and providing financial relief to family caregivers are certainly two of these paths. Much remains to be considered where financial support can be extended, including higher credit amounts and household income levels, and more allowable expenses. The Triple AAAs, who employ many of the direct care workers, could develop and provide a more formal “boot camp” curriculum to train the family member as a caregiver. There’re many manuals such as Barb J. Garrod’s Advanced Caregiving Training Manual that could be utilized for this purpose alongside the professional caregiving network in an aging population.
Aging in place as long as possible avoids more expensive premature institutionalization, while maximizing the quality of life in the home. Tax credits for family caregivers are a slice of the solution. Direct care workers, palliative and hospice providers do and can even more so boost family caregivers’ skills in the multiple and complex levels of carrying out ADL and IADL including end-of-life care.
With family caregivers inducted into the system through financial help and technical support, the nation’s elderly populations, as well as children and adults in need of care, can look forward to a robust, compassionate, and loving period of their life. It may be counterintuitive to quantify love in this way. But paying living wages to health care workers and using the tax code to provide financial support to family caregivers should be a no-brainer.
Ronald L. Phillips
Waldoboro, Maine
[1] https://www.carescout.com/resources/what-s-the-difference-between-adls-and-iadls
[2] https://www.aarp.org/advocacy/state-caregiving-policy-wins/
[3] https://www.maine.gov/dafs/economist/news/oct-09-24/ageism-awareness-day-2024-shifting-demographics-contributions-older-adults
[4] https://www.aarp.org/states/maine/cgus/#:~:text=New%20Data%20Show%2028%25%20of,MEMBERS%20ONLY
[5] https://www.aarp.org/pri/topics/ltss/family-caregiving/valuing-the-invaluable-2026-update/
[6] https://www.mecep.org/jobs-and-income/closing-the-gap-maines-direct-care-shortage-and-solutions-to-fix-it/s-and-
[7] https://livingwage.mit.edu/states/23
[8] https://www.usaging.org
[9] https://aspe.hhs.gov/sites/default/files/documents/74c430f818d48c7eb3b0907e11afda77/CaregiverTaxCreditsIssueBrief.pdf
[10] https://legislature.maine.gov/doc/11500
[11] https://www.congress.gov/119/bills/hr2036/BILLS-119hr2036ih.pdf
[12] https://www.carescout.com/cost-of-care