National 'Caregiving 101' Program Rolls into Action

From the WebMD Archives

May 17, 2001 (Washington) -- With so many families struggling to care for their own elderly and disabled relatives, it's about time they got some help.

In 2000, Congress created the National Family Caregiver Support Program, which is giving $125 million this year to states to develop aid programs for families. A Senate hearing today took an early look at the initiative.

'Informal' caregiving provided by a relative is often the only financial option for a family, but its 24/7 nature can be physically and mentally exhausting. According to Deborah Briceland-Betts, executive director of the Older Women's League, the typical informal caregiver is a married woman in her mid-40s to mid-50s. Already a full-time employee, the typical caregiver spends about 18 hours per week taking care of others.

Beyond those challenges, caregivers have to figure out -- often from scratch -- what they need to provide and how they can do it.

"Our community has 'Dial a Nurse' for medical questions," said Sandra Tatom, a Boise, Idaho, caregiver to her mother who spoke at the hearing. "But we could use a 'Dial a Caregiver' for caregiver questions. We just don't know what we're looking at down the line."

According to the Administration on Aging, families give 95% of the long-term care for frail older Americans, and almost 75% of the caregivers are women. If the work of the estimated 7 million informal caregivers in this country were replaced by paid home care workers, it would cost between $45 and $94 billion a year, the aging agency reported.

The new program is intended to allow states flexibility to design their own caregiver support initiatives, but it outlines five key areas for assistance:

  • Giving families information about health conditions, as well as available community resources and services
  • Providing assistance in getting families the help they need
  • Offering counseling, support groups, and training to help families face the challenges of caregiving
  • Providing respite care, so families can be temporarily relieved from their caregiving responsibilities
  • Granting limited supplemental services, such as home modifications, nutritional supplements, and incontinence supplies

"Providing grants to states to provide information and services to family caregivers is of utmost importance," said Helen Hunter, widow of famed baseball pitcher Jim "Catfish" Hunter and another speaker at the hearing. "It will mean a great deal to those families where being the primary caregiver is not the only job -- but one that must be done no matter what."

Hunter was her husband's informal caregiver; he suffered from Lou Gehrig's disease.

It's a voluntary program for states, which have to pony up 25% of program costs, with the feds picking up the rest. The federal Administration on Aging says that amount of money will provide services to about 250,000 caregivers.

But the program hasn't yet got off the ground. Louisiana, for example, doesn't expect to kick off its initiative until October.

That's got officials frustrated about bureaucracy. Kristin Duke, a Louisiana aging agency official and director of the National Association of Area Agencies on Aging, said her state's proposed guidelines "are more restrictive than we had hoped and allow for little direction from caregivers about preferred services."

Meanwhile, some caregiver advocates say the federal caregiver initiative doesn't do enough.

According to Briceland-Betts, "The program is woefully underfunded." Its budget translates to about $5 in services for every caregiver in the nation, she says.

But Steve Garvey, former baseball star with the L.A. Dodgers, tells WebMD, "It may be $5 per caregiver, but it would be millions of dollars in awareness."

Those eligible for the program include families taking care of the elderly, and older individuals caring for grandchildren or children with disabilities.

On that point, Briceland-Betts worried that some caregivers would be ineligible for the program, such as a spouse caring for a partner who is under the age of 60.

According to Sen. Larry Craig (R-Idaho), chairman of the Special Committee on Aging, "We're anxious to see if we've read the public right" or whether adjustments are needed.

For 2002, the Bush administration has proposed an increase of less than 2% for the program.