NYS Family Caregiver Council May 29, 2008 10:30 AM - 3:30 PM Crowne Plaza Hotel - Albany, New York
Welcome
Director Michael Burgess and Chairperson Cynthia Fountain welcomed attendees.
Updates on New York State Office for the Aging (NYSOFA)
Director Michael Burgess gave updates on activities at NYSOFA including a description of NY@Home that represents a comprehensive consumer program to assist persons to continue living independently through the provision of non-medical home and community based services, support for caregivers, non-medical home and community-based services, economic security (including tax relief and heating and weatherization programs), individualized information for long-term care decision making (including HIICAP, LTCIEOP and NYConnects), and promotion of livable communities and community empowerment.
Regional Caregiver Centers for Excellence (RCCE)
Marcus Harazin provided an update on the RCCE, touching on the growth of the caregiving network and the need to sustain that network. The Council had identified the need for more support services for caregivers to include a statewide network of local Caregiver Resource Centers that provide and coordinate a range of services including respite care, counseling and support groups; training; transportation; care coordination and advocacy; and training for caregivers in their 2007 recommendations. Council members were pleased that the RCCE would have a respite component, but they emphasized the need to be innovative in providing respite that would benefit both the caregiver and the care receiver.
Town Hall Meetings
Karen Iovino summarized the themes from the meetings held to date. Council members who attended shared their experiences and noted that:
- participants were grateful for the programs and services available to caregivers in New York State
- participants asked for more consumer education about available services
- participants said that they were honored to have a dialogue with the Council and NYSOFA
- participants appreciated the opportunity to meet with other caregivers
- participants indicated ongoing support is vital for caregivers of older people and for grandparents raising grandchildren.
Caring for Your Parents Initiative
Council member Lois Wilson described the Caring for Your Parents Initiative, a local partnership with WMHT, NYSOFA, AAAs and community and faith-based caregiving programs. A product of this initiative "It's an Age Thing" was produced by the Albany Guardian Society and was an excellent mechanism to educate consumers about being a caregiver and about services available to them. There was a month-long series of 75+ events in a 14 county area surrounding the Capital region including an event sponsored by the Albany Guardian Society entitled "Ethnic and Cultural Considerations of Caregiving" and an event held at the Hudson Valley Community College "A Day for Caregivers."
Coordinating Council for Services Related to Alzheimer's Disease and Other Dementias
Tammy Nazarko, from the New York State Department of Health (DoH), provided a summary of the forums to date. DoH is working on a report of the input collected at these forums. The testimony often mirrored what was heard at our Town Hall meetings.
Open Discussion
Council members shared information on various topics. The topics included:
- The Lifespan Respite Act and the importance of advocating for funding to support this law
- The spiritual impact of caregiving on the caregivers
- The advantages of including faith communities in the planning process and training them to help caregivers and promote caregiving within the congregation
- A description of a respite program that provides care so caregivers can attend Sunday services
- Training first responders through the Interagency Geriatric Mental Health Council
- The financial strain caregiving, especially for someone with Alzheimer's Disease, puts on a family
- The need for programs for children of those with early onset Alzheimer's Disease
New York State Office of Alcoholism and Substance Abuse Services (OASIS) Presentation
Robert Higgins, from the Office of Alcoholism and Substance Abuse Services (OASIS) shared information on the services they provide to assist caregivers of those with alcohol and substance abuse issues. He noted that the OASIS website provides training information and can link readers to services in their communities. He also noted the important role that caregivers play in getting help for those they care for. He stressed education on prevention services. OASIS provides prevention, intervention and recovery services. He provided some statistics including the fact that 17% of over people 55+ suffer alcohol/drug abuse problems (included prescription drug addiction). He described the need for local collaboration in communities. OASIS has coordinators across the state who can work with caregiver coordinators.
Caregiver Research
Council member Mary Mittelman shared her research on how improving caregiver well-being delayed nursing home placement of Alzheimer's patients. This caregiver specific research shows the positive outcomes of interventions and assistance to caregivers in terms of reducing caregiver depression and assisting them to deal with problem behaviors associated with Alzheimer's disease. Mary noted the needs of the care receiver change over time and so do the demands on the caregiver. Because of the wealth of information available through this research and the limited time available for the presentation, Council members were advised to contact Karen Iovino if they wished to receive a DVD providing an extended version of Doctor Mittelman's presentation or more information on her research.
Growing Number of Kinship Caregiver Roles
Gerard Wallace, Director of the NYS Kinship Navigator, discussed the growing number of people in kinship caregiving roles. He noted that 400,000+ children live with relatives in NYS. Some AAAs provide support to grandparents and the NYS Office of Children and Family Services funds 13 regional kinship centers and an excellent on-line resource - the Kinship Navigator: http://www.nysnavigator.org/. Kinship Care In NY: A Five-Year Framework for Action, 2008 Report, NYS Kincare Coalition, April 2008 details the recommendations of the November 2007 Kincare Summit held in Albany and attended by 153 participants. The report includes 19 recommendations focusing on supporting the strengths of kinship families.
Update on the NYS Caregivers Services Survey
Gail Koser provided an update on the NYS Caregivers Services Survey. The survey will be administered over the summer months and Finger Lakes Geriatric Center (FLGEC) will provide a report of their findings in September. Gail thanked the council members who volunteered to be part of the work group that assisted NYSOFA and FLGEC in developing the survey.
Family Caregiver Council Report Outline
Karen Iovino reviewed the draft outline for the report and said that she would be working on the first draft of the report to be shared with Council members before the September 25 meeting. She asked Council members to contact her if they had comments on the outline or development of the report. She also asked Council members if they would like to contribute a personal caregiving story to be included in the report.
Conclusion
Karen Iovino reminded attendees that the next meeting is September 25, 2008.