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Learning from Caregivers:
Defining, Evaluating, and Identifying Program and Service Needs

Town Hall Meetings 2008 and 2009: Overview and Summary

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

For the Town Hall Meetings, a panel consisting of Council members, NYSOFA executive staff, and local AAA 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 following issues:

The testimony from speakers at each meeting was compelling and served as a valuable resource to the Council as it began to draft recommendations for 2008 and 2009. 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. A full report from the Town Hall Meetings is included in Appendix B. Samples of experiences shared by caregivers at Town Hall Meetings are also included later in this Report.

Family Caregiving: Information Gathering and Data Review

The Council has been both guided and benefited from work that was undertaken to collect information about caregivers and caregiving issues in New York State. As part of this effort, two major caregiver studies were designed and implemented: (1) the "New York State Caregiver Services Survey: NY Connects Local Long Term Care Councils' Assessment of Caregiver Support Services" was a direct outgrowth of Council activity and was designed to survey key informants about caregiver services in order to quantify both gaps in services and policy barriers for programs providing support across the age span; and (2) the New York State Office for the Aging and Area Agencies on Aging's "Caregiver Support Programs Participants Survey" was designed specifically to study the impacts of caregiver programs offered through NYSOFA and the AAAs and ways to improve those programs in order to better serve New York's caregivers of older adults. The reports from these surveys were valuable to the Council in providing information about caregivers who are providing care and support to older adult care recipients.

The Council also reviewed information gathered from the Community Forums conducted by the New York State Coordinating Council for Services Related to Alzheimer's Disease and Other Dementias (Alzheimer's Coordinating Council), and the Kinship Care in New York report from the New York State Kincare Coalition.

Each of these activities is highlighted below.

New York State Caregiver Services Survey

The "New York State Caregiver Services Survey: NY Connects Local Long Term Care Councils' Assessment of Community Caregiver Support Services" was developed and implemented in the summer of 2008 by the Finger Lakes Geriatric Education Center (FLGEC) at the University of Rochester, in conjunction with NYSOFA, to assess New York State caregiver services and identify ways to be more responsive to the needs of caregivers across New York State. The objective of the survey was to collect information from 'key informants' about their knowledge regarding available services to caregivers locally in order to identify gaps in local community services for caregivers and to capture perspectives that are representative of each community's stakeholders (providers and consumers).

The survey provided a useful perspective on caregiver services as reported through a "key informant" model of evaluation and research. The survey sample included a diverse group of key informant survey respondents through a representative sample of local Long Term Care Council members from across the state. Further, Council members identified caregivers in the community to participate in the survey. These local Councils have been established as an important component of the NY Connects: Choices for Long Term Care programs in the 55 participating counties. Among the local Long Term Care Council membership are caregivers, service providers, recipients of services in the respondent group and county government officials. Survey respondents were asked to identify the top areas that the State should address as relating to caregiver services. A total count and ranking of summary recommendations are provided in the table below.

Rank Recommendation Category
1 Transportation/more transportation
2 Respite services/more respite
3 Better training/education for staff
4 Support/help for caregivers
5 Recruitment of staff/aides
6 Home care/in home services
7 Funding/adequate funding
8 Affordable/less expensive services
9 Social Adult Day Services/Adult Day Health Care
10 Better pay/higher salaries for staff
11 Funding for respite/more respite
12 Increased awareness/public awareness

The full report, New York State Caregiver Services Survey: NY Connects Local Long Term Care Councils' Assessment of Community Caregiver Support Services.

NYSOFA Caregiver Support Programs Participants Survey

The New York State Office for the Aging and Area Agencies on Aging's "Caregiver Support Programs Participants Survey" was a statewide caregiver survey to study the impacts of caregiver support programs and ways to improve the programs in order to better serve caregivers of older adults (aged 60 and older) in New York. The Caregiver Support Programs Participants Survey was funded by the federal Administration on Aging (AoA), as part of the Performance Outcomes Measures Project (POMP) under AoA Grant# 90AM3103, to test a statewide survey methodology and to assess the outcomes of caregiver support programs administered through the aging services network in New York State.

A preliminary survey was conducted of the 59 AAAs. Subsequently, 30 AAAs were randomly selected in order to draw an appropriate sample representing the caregivers served by aging network caregiver support services. A total of 1,209 caregivers were randomly selected from participants of caregiver support programs for survey participation. The random selection criteria for caregivers for this survey were that the caregiver must be:

The Caregiver Support Programs Participants Survey was developed by NYSOFA and administered by the FLGEC, with the survey data collection completed in July 2008.

Some of the key findings from this survey include:

The full Sustaining Informal Caregivers: New York State Caregiver Support Programs Participants Survey: Report of Findings on the Aging Services Network.

New York State Coordinating Council for Services Related to Alzheimer's Disease Community Forums

The New York State Coordinating Council for Services Related to Alzheimer's Disease (Alzheimer's Coordinating Council), chaired by the New York State Department of Health, was established to facilitate interagency planning and policy, review specific agency initiatives for their impact related to the care of persons with dementia and their families, and provide a continuing forum for concerns and discussion related to the formulation of state policy related to dementias and services for persons with dementia. The Alzheimer's Coordinating Council focused attention on caregiver-related efforts for persons with dementia, which is consistent with, and dovetails with, the work of the Family Caregiver Council.

Eight Community Forums were conducted in the spring of 2008 to hear testimony and to help inform the development of the New York State Comprehensive Plan on Alzheimer's Disease and Other Dementia in the Community, scheduled for release in 2009. Caregivers, individuals with Alzheimer's disease and other dementias, family members, health and social services providers, law enforcement officers, and other community members had the opportunity to share stories and experiences about caring for and providing services to this population.

Kinship Care in New York: A Five-Year Framework for Action

In 2008, the New York State Kincare Coalition, a statewide network of organizations and agencies that are dedicated to empowering kinship caregivers, released its recommendations for a five-year plan of action to better support the grandparents and other relative caregivers who are raising more than 400,000 children in New York State. Efforts of this group also dovetail with the work of the Family Caregiver Council, and the two groups are working to collaborate and exchange information relevant to each group.

The Kincare Coalition report, titled Kinship Care in New York: A Five Year Framework, puts forth a number of recommendations aimed at crafting laws and policies to adequately address the unique needs of grandparent caregivers, who are the backbone of a growing informal caregiving population existing outside of the foster care system. By stepping in to care for their grandchildren when parents are unable to parent, these caregivers provide stability for children and keep them out of the formal foster care system.

The full Kinship Care in New York Report.(External Link)