In 1997, the Family Caregivers Enumeration Act was introduced in the House (HR 2081) and the Senate (S 1206). This bill would require the year 2000 Census to gather information on family caregivers — people who provide noncompensated care to a family member or loved one who is chronically or terminally ill, or has a disability. The legislation would provide needed information on the extent of family caregiving in America. This Census count will shed light on the dollars our country saves due to the services provided by family caregivers, the imminent policy issue we must address as our country's elderly population grows at the same time that the number of available caregivers decreases.

The following letter was signed by members of the MDA National Task Force Steering Committee, individually addressed and mailed on February 25, 1998, to members of the Senate Government Affairs Committee, and the House Government Reform and Oversight Subcommittee on the Census.

RE: FAMILY CAREGIVERS ENUMERATION ACT
(H.R. 2081 and S. 1206)

Dear Representative/Senator:

As individuals with neuromuscular diseases, we know that family caregivers are true unsung heroes. Every day, countless acts of care and love are given by family caregivers to the thousands of us with one or another of the 40 diseases covered by the Muscular Dystrophy Association. This tremendous contribution to our well-being and to the nation's overall health care system is often unrecognized because the service is unpaid and kept within the family. Counting family caregivers in the 2000 Census will give us a more complete understanding of our nation's health care system and of the dynamics of modern American families. It will also be an important step toward forming policies to support family caregivers and to give them the recognition they deserve.

MDA was founded by concerned family members and, through its research, clinic, education and support group programs, assists family caregivers in many ways. The MDA National Task Force on Public Awareness comprises individuals with neuromuscular diseases and advises the Association on issues of importance to its clients. As individuals, and as representatives of MDA, we know firsthand the life-sustaining importance of family caregivers and we urge you to count them in the 2000 Census.

Sincerely,

The Members of the Steering Committee of the
MDA National Task Force on Public Awareness

/s William. Altaffer, Esq.
/s Jan Blaustone
/s Shelley C. Obrand
/s Chris Rosa