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Supporting and Strengthening
Caregivers in New York State 2009
"You Care for Them, We Care For You"
New York State

Family Caregiver Council Report

November 2009

Dear Director Burgess:

On behalf of the New York State Family Caregiver Council, we are submitting for your review and consideration the Report of the Council, Supporting and Strengthening Caregivers in New York State. The Council is comprised of a diverse representation of caregivers, including spouses/partners, adult children, parents of children with special health needs, family friends, faith group members, and grandparents and other relatives caring for children. These caregiver representatives make up a majority of the Council.

The New York State Office for the Aging and other ex officio members of the Council including the New York State Department of Health, Office of Children and Family Services, Office of Mental Health, Office of Mental Retardation and Developmental Disabilities, State Education Department, Office of Temporary and Disability Assistance, Department of Labor, Commission on Quality of Care and Advocacy for Persons with Disabilities, Office of Alcoholism and Substance Abuse Services, and the Developmental Disabilities Planning Council regularly participated in Council meetings. Various state agencies provided technical assistance in the preparation of this Report.

The Council met for the first time in the fall of 2007 and developed preliminary recommendations aimed at improving services to caregivers of all ages in New York State as the basis for action during 2008. In 2008, the Council focused its efforts on better understanding caregiver issues through a series of Town Hall Meetings throughout the state, and on evaluating programs and policies that affect caregivers and those they are caring for. This Report outlines those efforts and other actions taken during 2008-2009, provides information about informal caregiving and the issues and challenges this population faces, and provides recommendations for consideration. Our aim with this Report is to help deepen and broaden the understanding of informal caregiving and its impacts on families, communities, and New York State as a whole so that we may support caregivers in their vital role.

Thank you for your consideration of the information and recommendations included in this Report. We look forward to continuing our work in the coming year.


Cynthia Fountain, Chair
14 Willella Place
Newburgh, NY 12550

Brigitte Castellano, Vice Chair
Stony Brook Univ. School of Social Welfare
Level 2, Room 093
Stony Brook, NY 11794

Family Caregiver Council Members
The New York State Family Caregiver Council is comprised of caregivers of all ages who provide informal care to individuals across the lifespan who need such care, community advocates, academic experts in caregiving issues, and ex officio state government agency representatives.

The New York State Office for the Aging is the lead agency that coordinates the work of the Council. Staff support was provided in the preparation of this Report. The Council includes ex officio members from the following state agencies:

For additional information about the Family Caregiver Council or for questions about this Report, contact:
Karen Iovino
Aging Services Program Analyst
Phone: (518)474-0099
1 (800) 342-9871

Table of Contents

Executive Summary
Highlights of Family Caregiver Council Recommendations
Introduction and Background New York State Family Caregiver Council Learning from Caregivers: Defining, Evaluating, and Identifying Program and Service Needs Sharing the Voices of Caregivers Next Steps
Works Cited
Appendix A: Family Caregiver Council Recommendations
Appendix B: Town Hall Meetings: Summary

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