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New York State Family Caregiver Council

Background and Purpose

Recognizing the value of family and other informal caregivers to the independence of persons of all ages with disabilities, the Governor and the Legislature established the New York State Family Caregiver Council in the 2007-08 state budget. NYSOFA was designated as the lead agency to coordinate the work of the Council. The Council includes caregivers across the age and care spectrum, community advocates, academic experts in caregiving issues and New York State government agencies. The Council�s mission is to provide guidance, advice, and recommendations that will enable the state to develop policies and programs that support caregiving by reducing barriers and enhancing support for individuals who provide care for friends, family or community members of all ages and all levels of ability.

First-Year Accomplishments of the Family Caregiver Council

In its first year, the Council recommended strategies for action, which formed the basis for activities to support informal caregivers that took place during 2008 and 2009. These activities are summarized below:

  • Strengthen Community Support Services for Caregivers: The Council identified the need for more support services for caregivers, including a statewide network of local Caregiver Resource Centers that provide and coordinate a range of services including respite care; counseling and support groups; transportation; care coordination and advocacy; and training for caregivers.
    Action Steps: The Executive Budget for State Fiscal Year 2009-10 included a reappropriation of the SFY 2008-09 funds for Regional Caregiver Centers for Excellence (RCCE). The RCCEs are intended to strengthen the capacity of the Area Agencies on Aging (AAAs) and community and faith-based caregiver support programs across the state so they may better serve New York�s caregivers.
  • Increase Information and Outreach: The Council identified the need to increase access to streamlined information and assistance about community supports and services through NY Connects: Choices for Long Term Care.
    Action Steps: Funding was included in the 2008-09 budget to continue NY Connects as a vehicle to provide objective information about the array of options available in communities to support consumers, caregivers and professionals. The Council also identified the need to reach out to caregivers, particularly those who do not self-identify as caregivers. Subsequently, the Council has been working with NYSOFA staff to develop a media campaign that will reach out to all caregivers to help them to recognize their valuable role as a caregiver and provide information on how to obtain support should they need it.
  • Enhance Housing Options and Supports: The Council identified housing for loved ones as a major concern of caregivers.
    Action Steps: The New York State Conference, Empowering Communities for Successful Aging, held in November 2008, provided a forum to discuss housing, neighborhood supports and services, and provided communities with tools to become elder friendly and more livable for persons of all ages. In addition, NYSOFA and many of the ex officio members of the Council are active participants in the Most Integrated Setting Coordinating Council (MISCC), which is responsible for developing a comprehensive statewide plan to assist people of all ages with physical and mental disabilities in accessing care and services in the most integrated settings appropriate to their individual needs. Housing is a primary focus of the MISCC�s work.
  • Improve the Rights of Caregivers: The Council identified the need for caregivers to understand their rights when assisting their loved one with legal or medical issues.
    Action Steps: A Caregiver Tool Kit and Wallet Card were designed to assist caregivers to better know their rights and where to call for assistance. This information has been widely distributed at meetings, events and to the local AAAs.
  • Continue to Develop a State and Local Infrastructure: The Council identified the need for better communication about caregiving issues and strategies, and affirmed the value and need to continue its work.
    Action Steps: Quarterly meetings of the Council were held with the continued participation of ex officio state agency representatives. Linkages were formed with the Alzheimer�s Coordinating Care Council, and with the New York State KinCare Coalition. The development work for a statewide caregiver and respite coalition was undertaken.

These action steps are consistent with Governor Paterson�s agenda to support New York State families and with NYSOFA�s continuing efforts to advance community-centered, family-centered, caregiver-centered, and customer-centered approaches to meeting the needs of older adults and caregivers for persons of all ages. The Council�s activities during its first year:

  • recognized the importance of caregivers and community-based care and support services;
  • incorporated cultural, linguistic, age-related, sexual orientation, and disability competencies, as well as the MISCC�s General Principles and Guidelines;
  • addressed caregivers caring for people across the lifespan; and
  • recognized the interconnected relationships, program needs, and issues for the caregiver and care receiver.


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