Office for the Aging

 

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.

Sincerely,

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.

  • Renee Benson, Albany
  • Geri Brooks, White Plains
  • Pamela Canham, Albion
  • Linda Campbell, Syracuse
  • Brigitte Castellano,Vice Chair, Wading River
  • Robert Coye, Syracuse
  • Robin Fenley, Staten Island
  • Morton Flexer, Westfield
  • Cynthia Fountain, Chair, Newburgh
  • Rose Golden, Delmar
  • Linda James, Rochester
  • Igal Jellinek, Manhattan
  • Carol Levine, Manhattan
  • Janet Long, Watertown
  • Tracy Luo, Manhattan
  • Mary Mittelman, Manhattan
  • Louis Nasca, Hornell
  • Maggie Ornstein, Queens
  • MaryAnn Pula, Cheektowaga
  • Grace Rascoe, Plattsburgh
  • Delilah Reyes, Rensselaer
  • Sharon Shapiro, Brooklyn
  • Catherine Thurston, Brooklyn
  • Ronald Toseland, Selkirk
  • Lois Wilson, Glenmont
  • Betti Weimersheimer, Mamaroneck

    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:



  • Department of Health
  • Office of Mental Health
  • Developmental Disabilities Planning Council
  • Office of Children and Family Services
  • Office of Mental Retardation and Developmental Disabilities
  • Office of Temporary and Disability Assistance
  • Department of Labor
  • Office of Alcoholism and Substance Abuse Services
  • Commission on Quality of Care and Advocacy for Persons with Disabilities
  • State Education Department - Vocational and Educational Services for Individuals with Disabilities

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






Table of Contents

Executive Summary
Highlights of Family Caregiver Council Recommendations
Introduction and Background
  • Who Are Informal Caregivers?
  • National Profile of Informal Caregivers
  • National Facts and Figures of Caregivers of All Ages
  • New York State Profile of Informal Caregivers
  • New York State Facts and Figures: Aging Services Network
  • Economic Value of Informal Caregiving
  • Employment Status
  • Workplace Impacts
New York State Family Caregiver Council
  • Background and Purpose
  • First-Year Accomplishments of the Family Caregiver Council
Learning from Caregivers: Defining, Evaluating, and Identifying Program and Service Needs
  • Town Hall Meetings
  • Overview and Summary
  • Family Caregiving Information Gathering and Data Review
  • Caregiver Services Survey
  • NYSOFA Caregiver Support Programs Participants Survey
  • New York State Department of Health Coordinating Council
  • for Services Related to Alzheimer's Disease - Forums
  • Kinship Care in New York: A Five Year Framework for
  • Action
Sharing the Voices of Caregivers
  • Rewards and Challenges - Personal Stories from Family Caregiver
  • Council Members
  • Individual Experiences Heard at Town Hall Meetings
  • Experiences Heard at Alzheimer's Council Forums
Next Steps
Appendix A: Family Caregiver Council Recommendations
Appendix B: Town Hall Meetings: Summary