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Appendix B

Town Hall Meetings: Overview and Summary

Planned by NYSOFA and sponsored by the Family Caregiver Council, eight Town Hall Meetings were held in 2008 and 2009. The purpose of the Town Hall Meetings is to hear directly from caregivers across the lifespan.

A panel consisting of Family Caregiver Council members, NYSOFA executive staff, and local Area Agencies on Aging Directors received comments and heard stories from caregivers about their experiences and ways in which they could be supported. The meetings were held at the following locations:

The meetings were structured to encourage people to participate and testify about:

The testimony from speakers at each meeting was compelling and a valuable resource to the Family Caregiver Council as they began to draft recommendations for 2008-09. Input from caregivers at the Town Hall Meetings framed the many challenges and rewards of providing care to a loved one and also included information to help develop future policies about services that help and support caregivers, systemic long-term care issues, and suggestions to strengthen and support caregivers in New York State. Samples of stories shared by caregivers at Town Hall Meetings were included earlier in this Report.

Themes and Issues Raised by Speakers

Why Caregivers Need Help

Caregivers identified the many rewards of providing care to loved ones or family members, and also identified some of the challenges they face, including a sense of isolation, stress, and frustration related to competing demands; not knowing where to turn for help, guilt about not being able to do enough to support the care recipient, and the emotional toll of dealing with end- of-life issues. Specific challenges raised by caregivers included:

Services That Help and Support Caregivers

During the Town Hall Meetings, caregivers clearly articulated those supports and services that help them to continue in their caregiving role. When available, these services help caregivers to reduce stress and isolation, to understand that they are not alone in their experiences, to realize that they are assuming a valuable role, and that they, too, deserve support. These services should be tailored for particular populations including but not limited to grandparents caring for grandchildren, caregivers of Alzheimer's patients, and caregivers of individuals with early stages to more severe stages of dementia. The services that were mentioned numerous times by caregivers include the following:

Direct Caregiver Support

Respite

Facility-Based Respite

Home and Community Based Services

Legal Services

Transportation

Financial Support

Systemic Long Term Care Issues

Caregivers also identified systemic long-term care issues that need to be resolved in order to make their caregiver role easier. These issues, not necessarily related to direct support to caregivers, include availability of a professional workforce, transitions among programs and services, and availability of housing options. Additional issues that were raised include:

Suggestions to Strengthen and Support Caregivers in New York State

Based on many collective years of caregiving, Town Hall presenters (both providers and caregivers) were able to articulate a variety of suggestions to strengthen and support caregivers. The suggestions focused on increasing caregivers’ knowledge of services and their own role as a caregiver, ways to better support caregivers financially, strategies to increase the workforce to better support caregivers, the connection between caregiver issues and other major initiatives, and program enhancements to existing services.

Public Education

Financial Support

Civic Engagement

Collaboration

Program Enhancements