CARE-NET: CAREGIVER ADVOCACY

State-wide Coalition Advocates for Caregivers

Americus, GA – The Rosalynn Carter Institute for Caregiving (RCI) has established a state-wide advocacy group with its partner CARE-NETs to promote the health of Georgia's caregivers; family and professional. Too often, caregivers are viewed as expendable resources and are overlooked and ill-prepared leading to damaged health, high levels of stress and burn-out. Our view, in contrast, is that family, professional and para-professional caregivers are the most valuable asset in any care system; a resource that can be cultivated, preserved, developed and valued by the community. Our approach emphasizes strategic investment of community resources in building caregiver skills and supports and protecting caregiver health.

One of the first initiatives of the Georgia CARE-NET Coalition is to provide statewide training of caregivers in a variety of evidence-based caregiver programs. Research has demonstrated that by promoting caregiver skill in problem solving, stress management, management of problem behaviors, and working with the health care system, caregivers can be made both more effective and more resilient. A range of Psycho-Social and Skill Training programs have been shown to protect the health of caregivers. Training is being offered to individuals and agencies across Georgia providing long-term, home and community-based care for the elderly and individuals with chronic illnesses and disability. Our aim is to create a state-wide network of master trainers and organizations dedicated to ongoing provision of the most effective caregiver support programs available. In addition, the RCI is creating an online resource center for agencies and caregivers to use to obtain information about effective caregiving interventions and assistance in determining which programs will best meet needs in a particular community. Three trainings have already been completed on Care Transitions, Powerful Tools for Caregivers, and Saavy Caregiver. More are scheduled.

A second dimension of the work of the Coalition is to work to secure full funding to establish a Family Caregiver Education and Training Network. This network will provide access to training in evidence-based strategies for family caregivers through the Georgia CARE-NETs which are voluntary associations dedicated to caregiver health and well-being.

Third, the Coalition will be looking at the serious problem of lack of health insurance and inadequate health insurance for para-professional and family caregivers. Without insurance, many caregivers do not receive adequate health and preventive health care even though they work under difficult and stressful conditions and are often exposed to transmittable pathogens in their work. The Coalition will work to assure that Georgia's caregivers have access to affordable health care and health insurance.

This work is being initiated with a grant from the Healthcare Georgia Foundation. Created in 1999 as an independent, private foundation, the Healthcare Georgia Foundation’s mission is to advance the health of all Georgians and to expand access to affordable, quality healthcare for underserved individuals and communities.

Grant support from the Foundation will allow the Rosalynn Carter Institute to:

• Provide training on evidence-based caregiver interventions to 300 home and community-based service providers across Georgia.

• Provide Georgia’s 12 CARE-NETs with incentive grants and technical assistance in the development and delivery of caregiving training. CARE-NETS are unique coalitions of caregiver support organizations operating in every region of the state.

• Develop an online resource center that will maintain a current database of effective caregiver interventions.

• Convene an annual meeting of all Home and Community-Based Services grantees on the campus of Georgia Southwestern State University.

To find out more about the training or this grant, contact Amy Tribble, Director of State Initiatives at the Rosalynn Carter Institute or Richard Birkel, Executive Director of RCI.

The Caregiver's Advocate: The Georgia CARE-NET Coalition

Georgia's CARE-NETs are Leaders in Supporting Family and Professional Caregivers in their communities. They are made up of volunteer leaders from a wide range of agencies and organizations, as well as family caregivers and care recipients.

CARE-NETs serve many functions. In particular, they:

1. Link professional and family caregivers in a supportive community concerned with caregiving.

2. Identify and study community caregiving strengths and needs.

3. Implement effective services and educational programs for caregivers.

4. Organize community-based forums for public feedback on caregiving issues.

5. Develop a resource capacity for information on caregiving.

6. Provide a source of support for caregivers.

7. Foster strong relationships among community leaders concerned about Caregivers

8. Provide a forum for agencies and stakeholders to work collaboratively, coordinating human and fiscal resources.

9. Educate the community about caregiving.

10. Identify policy issues and advocate on behalf of Caregivers.

11. Work to assure Quality Care in their communities.

Beginning in the 1990s, RCI developed the CARE-NET (Caregivers Network) program as a unique coalition of caregiver support organizations across a broad array of illnesses and disabilities. The coalitions involved leaders and advocates from community and state agencies, private corporations and churches together with family caregivers in the same planning process.

The creation of 12 community CARE-NET coalitions, one in each Area Agency on Aging district in Georgia, has been supported by grants from the Pew Charitable Trusts, the Robert Wood Johnson Foundation, and the Administration on Aging. These active and ongoing coalitions are highly suited to address the major needs of all caregivers. CARE-NET coalitions provide ongoing assessment of community resources, identify and remedy gaps in services, share information and resources among agencies, develop strategies for complementary professional and family caregiver activities, offer caregiver education and, most importantly, advocate for Caregivers. Today, this caregiver network represents a unique resource in the state of Georgia and one of the most promising opportunities for developing comprehensive caregiver supports anywhere in the country.

Purpose and Rationale:

In America today more than 50 million family caregivers provide the largest proportion of care for dependent elderly individuals as well as adults and children with disabilities and chronic illnesses. The health and well-being of these family caregivers is rapidly becoming a major public health concern. Research has found that family caregivers report frequent mental distress, have more illness including high rates of clinical depression, and more health problems in general than the non-caregiving population.

These problems will accelerate in the near future as the number of caregiving families increases along with the anticipated rise in our elderly population as the "baby boomers" age.

Although we know how to mitigate these negative effects, few communities have been able to develop and maintain an adequate "infrastructure" of quality caregiver supports. Research has found that the provision of services such as respite care, support groups, education and help with developing personal coping strategies can reduce caregiver stress, improve caregiver health, and extend the time that dependent individuals can remain in the community without caregiver "burnout".

One of the main problems in building community capacity is the lack of organizational leadership for collaborative planning and solutions. Remarkably, there is no single agency responsible for assisting family caregivers or for the design and development of needed supports. Many caregivers are at a loss to know where to turn for help. This highly fragmented system generates confusion and fails to provide the genuine, comprehensive aid overburdened caregivers need.

Underlying Principles:

The Rosalynn Carter Institute for Caregiving (RCI) approach to building caregiver support is based on three primary observations gained from 20 years of experience. First, we find that caregivers across all types of disabilities and illness share experiences and needs that make them motivated to collaborate in identifying and implementing programs that are mutually beneficial. Second, we have learned that having professional and family caregivers working closely together creates a powerful synergy, promotes mutual understanding, and enables creative approaches that best blend their respective contributions. Finally, we find that bringing private providers, non-profits and public agencies together provides the best mix of leadership, perspective and skills for coalition and advocacy success.