Given that nearly three-quarters of unpaid informal caregivers to seniors are women, the Senate Special Committee on Aging and the Senate Health, Education, Labor, and Pensions Subcommittee on Aging held a joint hearing on February 6 to discuss women and long-term care.
“Women make up a disproportionate share of caregivers in this country, with very little public support,” stated Sen. John Breaux (D-LA), Chair of the Special Committee on Aging. “We lack a cohesive long-term care system in this country and we will pay a dear price for this when the baby boomers retire,” he said.
Chair of the Health, Education, Labor, and Pensions Subcommittee on Aging, Barbara Mikulski (D-MD), agreed, saying that “many pieces are missing.” Noting that women live longer than men, she said, “Caregivers and their families face mental, emotional, physical, and financial stresses and strains.”
A bipartisan group of women Senators testified before the committee to detail their personal experiences. Sen. Blanche Lambert Lincoln (D-AK) discussed the difficulties associated with the “Sandwich Club,” or individuals who are responsible for caring for children and aging parents simultaneously. “I can tell you from personal experience that these responsibilities can seem awesome at times,” she said, noting that there are several legislative initiatives that could provide essential help to family caregivers, she highlighted a bill (S. 775) that she sponsored that would increase the number of geriatricians through training incentives and Medicare reimbursement for geriatric care.
Noting that her mother had raised seven children, while caring for her husband who had multiple sclerosis, Sen. Patty Murray (D-WA) said, “Caregivers like my mom can’t speak out for one simple reason: they don’t want the person they are caring for to ever feel like a burden.” She called for doubling the funding for the National Family Caregiver Support Program and added that a respite care benefit should be provided under Medicare.
“Just as women have more at stake when it comes to long-term care, they also stand to gain the most from public policies that help families meet their long-term care needs,” stated Sen. Susan Collins (R-ME). She detailed her support for a bill (S. 627) that would provide a tax credit for long-term care expenses of up to $3,000 and would provide a tax deduction to help individuals purchase private long-term care insurance. Sen. Collins also called for a restoration of home health care reimbursements under Medicare. Under the Balanced Budget Act of 1997 (P.L. 105-33), cuts in home health care reimbursements were phased-in over five years.
Sen. Debbie Stabenow (D-MI) agreed, noting that the scheduled 15 percent cut on October 1, 2002, will “devastate services available to families nationwide.” She added that cuts in state budgets have compounded the problem, citing the closure of 18 nursing homes in Michigan since 1998. Sen. Stabenow also emphasized the importance of providing a prescription drug benefit for seniors. “We need to create the sense of urgency that is needed.”
Sen. Hillary Rodham Clinton (D-NY) stated that “just because family caregiving is unpaid does not mean it is costless,” adding, “The costs include not just time, and lost economic opportunities, but also personal strain and fatigue, and poor health.” Sen. Clinton expressed her support for the National Family Caregivers Support Program, stating that she was working on legislation that would expand the concept of the program to other populations, such as parents who care for chronically ill children and families of disabled individuals.
Sen. Jean Carnahan (D-MO) talked about her experience caring for her father. “Whether that person is your husband, mother, or father, chances are they do not want to be a burden. Chances are they do not want their kids caring for them when it should be the other way around,” she said.
The committee also heard from two advocates. Laurie Young of the Older Women’s League painted a picture of an informal caregiver, “The typical informal caregiver is a married woman in her mid-forties to mid-fifties. She is employed full-time and also spends an average of 18 hours per week caregiving. In addition to juggling her career with caring for a parent, partner, or spouse, she may be the primary caregiver for her children and, increasingly, for her grandchildren as well.”
In addition to the emotional and physical costs of caregiving, Ms. Young detailed the financial burden. “It is estimated that caregivers lose an average of $550,000 in total wage wealth, and their Social Security benefits decrease an average of $2,100 annually, as a result of caregiving,” she said.
Ms. Young detailed nine policy recommendations aimed at providing relief to caregivers:
Gail Hunt of the National Alliance for Caregiving also noted the financial burden associated with caregiving, “The value of unpaid family care is estimated by the United Hospital Fund at nearly $200 billion per year-more than the cost of nursing home and home health care combined.” She added, “Make no mistake: family caregivers are the unpaid extension of our country’s health care system. Without them, the long-term care system would collapse.”
Ms. Hunt also called for increased funding for the National Family Caregiver Support Program, saying that the program needed more visibility. She recommended that the White House hold a Conference on Caregiving and begin a national public awareness campaign. Additionally, she noted the importance of providing tax relief to caregivers. “Caregivers need financial support….they need information….they need services.”