Rosalynn Carter and Hillary Clinton Headline Family Caregiving Conference


National Health Council and National Quality Caregiving Coalition Hold

Conference to Share Progress on Caregiver Action Plan

WASHINGTON, June 26 /PRNewswire/ -- The National Health Council and National Quality Caregiving Coalition today hosted a national Family Caregiving Conference with distinguished speakers including Former First Lady Rosalynn Carter and Senator Hillary Clinton. This conference reviewed progress made since 1998 when the National Health Council, recognizing the need to support caregivers, created a three-to-five year action plan to improve caregiver services and support nationwide. The two-day conference reported on the results of this plan, the successes, challenges, and issues that remain to be addressed.

The three main topics discussed were increasing support from the health care system, increasing support for services that caregivers need and increasing support for balancing work and family commitments.

"In 1998 the National Health Council recognized a need to help resolve caregivers' issues and build a national agenda to address them," said Myrl Weinberg, president, National Health Council. "Now, four years later, I am excited to celebrate the progress we have made on this important issue and to collaborate on the issues that remain."

Advocating for caregiver issues since 1990, the National Quality Caregiving Coalition of the Rosalynn Carter Institute (RCI) was founded by former First Lady Rosalynn Carter to strengthen caregiver services across the nation. Dr. Ronda C. Talley, RCI executive director, said, "The last decade has seen a tremendous growth in interest regarding the needs of caregivers. Family, professional, and community caregivers are finally beginning to be recognized for the tremendous contributions they make to society by caring for those they love who are in need. It is important that the RCI's National Quality Caregiving Coalition and the National Health Council have joined forces to lead the nation in addressing caregiving issues at this critical juncture."

Increasing Support from the Health Care System

Shorter hospital stays and more successful acute care procedures mean more and more patients still in need of medical assistance are sent home. Increasingly, caregivers are being asked to provide this assistance. Consequently, support from the health care system is becoming more important. The first Federal legislation specifically designed to address these needs, the National Family Caregiver Support Program, supports information, referral, assistance, counseling, training and respite care. The program's funds go to state offices on aging who then distribute the funds to local agencies on aging and community service providers. Crucial services like home-delivered meals are now provided through this program. Another example, the 1999 Olmstead Decision by the Supreme Court, held that people with disabilities are entitled to receive community-based services when appropriate, and that states cannot favor institutional care in their policies. This decision helps provide patients and families with more options, as it does not limit them to institutional care. In addition, the Lifespan Respite Care Act of 2002, introduced by Senators Hillary Rodham Clinton (D-NY), Olympia Snowe (R-ME), Barbara Mikulski (D-MD), and John Breaux (R-LA), is designed to provide more relief to family caregivers through increased access to respite care services. Under the bipartisan legislation, grants would be available to help increase availability of respite care services and the training of respite care workers and volunteers.

Also, some organizations like the United Hospital Fund have created models that other health care organizations can adapt. United Hospital Fund's Family Health Care project tested innovative ways to improve hospital-caregiver interactions.

In addition, the Alzheimer's Association and the National Chronic Care Consortium cooperated on the development of a four-part model to improve treatment and care in integrated managed care settings. This project has helped involve family caregivers in identifying dementia, initial assessment and ongoing medical and non-medical care management.

Increasing Support for Services that Caregivers Need

Many caregivers need help finding flexible, affordable caregiver services and coaching in caregiving tasks. Again, many organizations have worked to help provide ongoing training and resources to assist this group. There has been great progress in state policies and programs. One illustration is the National Health Policy Forum's research on Oregon's model for providing long- term care to the elderly and people with disabilities. The state developed case manager services, and caregivers or care recipients can now hire individuals to provide family in-home care, paid for by the state. In addition, California integrated their services through statewide caregiver resource centers. And, New Jersey created a single point of entry for caregivers into their state's system and novel caregiving training programs.

Others have conducted research on caregivers' needs to better serve this group. The Hospice of Michigan developed and tested professional/caregiver interaction models designed to increase caregiver confidence and reduce anxiety. And, many organizations implemented systems to disseminate information and tools to aid caregivers. The National Alliance for Caregiving, for example, created an Internet-based clearinghouse of caregiving materials and resources. The National Family Caregivers Association developed a Caregiver Survival Kit specifically tailored for those who care for Alzheimer's patients. In 2001, the Robert Wood Johnson Foundation committed $100 million, through the Faith in Action program, to help community organizations develop volunteer-based caregiving services.

Increasing Support for Balancing Work and Family Commitments

According to the National Family Caregivers Association, more than half of caregivers are in their prime wage earning years; therefore, they must balance caregiving with their careers. Since 1998, many organizations and companies have implemented programs or conducted research on this topic. Metropolitan Life conducted a study that found employees who are caregivers of people with long-term care insurance are twice as likely to continue working as those caring for non-insured relatives.

In addition, there is action to expand the Family and Medical Leave Act of 1993 to include workers in businesses with 25 or more employees. With funding from the Grotta Foundation, the New Jersey Department of Health and Senior Services is working with five partner organizations on a comprehensive approach to improve workplace support for caregivers of the elderly. In addition, Fannie Mae implemented a program to offer the services of eldercare specialists to help employees deal with caregiving concerns like finding home care.

Conference Sponsors

Ortho Biotech, Pfizer, Sigma-tau Pharmaceuticals, National Hospice and Palliative Care Organization, AT&T, Novartis, Easter Seals National Multiple Sclerosis Society, American Cancer Society, AARP and Kimberly-Clark were all sponsors of this Conference.

About the National Quality Caregiving Coalition

Sponsored by the Rosalynn Carter Institute for Human Development, the National Quality Caregiving Coalition includes national associations, groups, and individuals with interests in and active agendas that promote caregiving across all ages and disabilities throughout the life span. The Coalition's more than 30 member organizations include the Family Caregivers Alliance, the National Association of Caregivers, Children of Aging Parents, the Well Spouse Foundation and other national caregiver groups; the American Hospital Association, the American Association on Mental Retardation, and the U.S. Centers for Disease Control and Prevention.

About the National Health Council

The National Health Council is a private, nonprofit umbrella organization of more than 100 national health-related organizations working to bring quality health care to all people for more than 80 years. Its core membership includes 48 of the nation's leading voluntary health agencies representing more than 115 million people with chronic diseases and/or disabilities. Other Council members include professional and membership associations, nonprofit organizations with an interest in health, and major pharmaceutical and biotechnology companies. The Council serves as a place for diverse health- related groups to build consensus with a focus on patients and their needs.