Suzanne Mintz, president and founder of the National Family Caregivers Association, and Robert Friedland, Ph.D., founding director of the Center on an Aging Society at Georgetown University, took on two of DC's favorite topics: data and politics. Mintz introduced her talk by reading the testimony of two family caregivers; each chronicled the challenges and barriers faced each day by millions of people and their loved ones. "But it's not practical for us to see a million caregiver march on Washington," Mintz said. "We do need to get people to see the bedrooms and the bathrooms of these families."
Caregivers and patients alike suffer physical and emotional tolls. And caregivers who must leave the workforce often face the loss of pension growth, Social Security earnings, and health insurance. According to Mintz, these issues must be the focus of advocates for better health care.
Friedland described the scope of the problem, which he has studied extensively. An estimated 12.2 million people needed a family caregiver in 1995, but that number varies significantly depending on the degree to which the person is dependent on others. Of these, almost half are under the age of 65. Beyond that age, 71% of people need or will need care at home. Friedland said that people who need such help will increase more rapidly than the number of people who can provide it.
"The system looks like one, if you're far away. But on the ground, it is extremely fragmented," Friedland said.
Efforts are underway to make that system more coherent. Mintz applauded the last Congress for funding the National Family Caregiver Support program. This program will award $113 million in grants to states to run programs that provide critical support to help families maintain their caregiver roles. It is the largest new support program under the Older Americans Act since 1972, when Congress established nutritional programs to serve the elderly.
ABCD President Joanne Lynn asked the group to recommend strategies or changes that might improve the lot of family caregivers. Among the ideas were:
The need for change, and for advocates, is great. As Friedland quipped, "It is difficult for the Hill to understand that people who need help need it for a reason." ABCD and its allies give voice to those reasons.
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