Grassley said an estimated 22 million Americans provide critical support and safekeeping to their loved ones who need long-term care, "yet they themselves are starved of resources that could help ease the tremendous burden they bear on a daily basis, year after year." He cited preliminary findings from a recent nationwide survey that say on average, family members deliver long-term care for six to 11 years.
Perspective on the challenges of long-term caregiving was offered during a morning hearing of the Senate Special Committee on Aging. Grassley invited top federal and state government officials, an Iowa director of services for the elderly, a family caregiver, and a journalist facing long- term care needs because of Alzheimer's disease to testify on their expertise and experiences.
Donna Shalala, Secretary of Health and Human Services, presented one component of a long- term care initiative unveiled last month by President Bill Clinton. The proposed National FamilyCaregiver Support Program would direct federal resources to family caregivers through the existing nationwide network of state and local area agencies on aging. It would be a $125 million program that could help 250,000 families who care for an older relative.
During today's hearing, Grassley announced that he and Sen. John Breaux of Louisiana would introduce legislation to establish this new program. Grassley is chairman of the Aging Committee and Breaux is the ranking member.
"The vast majority of family caregivers are women who also have full-time jobs and children to raise. They are committed to helping older relatives stay at home and out of expensive and far less desirable institutions. They pay a toll with their financial resources, at work, physically, and emotionally. The program we want to set-up acknowledges this personal sacrifice and the resulting public benefit. It is a modest proposal to give family caregivers some well-deserved help," Grassley said.
Specifically, the program would set up a support system in each state to help family caregivers, especially those with the greatest social or economic need. Each state would provide:
States would received federal dollars according to population. To set up they system, states would contract with area agencies on aging who would, in turn, contract with provider agencies for services. Donna Harvey, Executive Director of the Hawkeye Valley Area Agency on Aging in Waterloo, Iowa, testified today that the area agencies on aging are positioned to be the natural coordinator for the proposed program. "Throughout the years, [we] have had to be very creative in their strategies to meet the needs of older persons particularly those residing in small communities and rural areas where services are very limited," she said.
In addition to creating these systems in each state, the Family Caregiver Support Programwould award grants to encourage new ideas for family caregivers and development of emergency back-up systems for family members.
Grassley said this bill is part of a continued effort to address the challenges of family caregiving.
Last year, he introduced a bi-partisan bill to help protect families from the financial drain of long-term care by making it more affordable to buy long-term care insurance. Long-term care insurance can cover a variety of services important to family caregiving, such as respite care, adult day care, home health care, and homemaking services. Grassley reintroduced the legislation this year.
Grassley also chaired a hearing last September which included testimony about the importance of family caregivers from former First Lady Rosalynn Carter. Other witnesses discussed the impact of caring for an older family member. Caregivers report spending an average of $171 to $357 a month of their own money for food, medication and other expenses. In addition, caregivers often take time away from work or leave their jobs altogether to continue care.