Contact Information
Ruth Walden
(518) 474-0570
rxw03@health.state.ny.us
Family Voices of New York (FV of NY) provides information and resources to families of children and youth with special health care needs (CYSHCN) and the professionals who work with them through individual information and referrals, parent matching, conferences and sharing of materials including care notebooks and resource guides. Continuing to work with families to promote leadership and advocacy has increased state membership and helped to introduce Family Voices to more families. FV of NY partners with Title V on the NY Title V Needs Assessment and Block Grant. Family Voices of New York has also provided education and training for pediatric residents, nurses and dentists.
“ Involving families makes all the sense in the world and now we have it.”
- a pediatrician
Family Voices is pleased to be a part of the Child Development Learning Collaborative for early childhood developmental screening, a very successful opportunity for working with families and pediatricians. The Child Development Learning Collaborative focuses on developmental screening and surveillance of young children. Each team consists of a pediatrician, a care coordinator and a family member who work on quality improvement activities surrounding surveillance and screening and quality improvement. Data collected supports the need for leadership development and information for families.
BUILDING PARTNERSHIPS: Youth and Providers
A working relationship involving
Family Voices, the New York State
Department of Health and youth and
young adults within the state has
highlighted true partnerships. The
resulting Youth Advisory Committee
will focus on several of the National
Performance Measures, benefiting
greatly from the input of youth.
ADVOCACY IN ACTION:
Last year, FV of NY participated in
specific initiatives on topics
including:
- Emergency care and services
- Medical Home
- Mental Health
- Transition to Adult Health Care
- Youth Leadership
- Quality Assurance
WORKING TOGETHER FOR CYSHCN:
Family Voices of NY partners with others on activities related to the 2010
Performance Measures:
- Family Participation:
- Helping families to learn skills for effective participation through NY CSHCN Program's Champions for Progress Training Opportunity
- Participating on the AMCHP Family Leadership Caucus
- Advising AMCHP Family/Youth Scholarship Program
- Medical Homes / Community-Based Services:
- Presentation at the Regional Emergency Medical Services for Children Meeting about Family Centered Care from pre-hospital providers and in the Emergency Department; participation on the EMSC Advisory Council.
- Expanding the understanding and implementation of Medical
Homes and community-based services in partnership with the NY
State Department of Health, American Academy of Pediatrics State
Chapter, and the Academy of Family Physicians-NY State Chapter.
Useful Links
- Resource Directory for Children with Special Health Care Needs
- Early Intervention Program
- New York State Developmental Disabilities Planning Council
- New York State Office of Advocate for Persons with Disabilities
- Rose F. Kennedy Center
- Strong Center for Developmental Disabilities
- Westchester Institute for Human Development
- New York Autism Network
- Learning Disabilities Association of Western New York
- The Learning Disabilities Association of NYC
- Learning Disabilities Association of Central New York
- Western New York Disabilities Forum
- Parent to Parent NYS -
