NEW YORK

500 Balltown Road 
Schenectady, NY 12304
Phone:  (518) 381-4350Fax:  Toll-Free:  (800) 305-8817
    
Primary Contact(s):
Michele Juda (518) 381-4350 - Executive Director
Yvette James (800) 305-8817 - Director of Programs
Lin Perry (800) 305-8817 - Project Director
Grant Abstract Summary:
Parent to Parent of NYS Parent to Parent of NYS Inc. will maintain a Family-to-Family Health Care Information and Education Center to assist families to: (a) secure health coverage, (b) ensure that medically-necessary services for their child(ren) with special health care needs are received (c) develop effective partnerships with health care and other service providers, (d) keep their children at home and in their communities by ensuring access to needed community based support services in their homes, (e) receive the emotional, parent-to-parent support needed to assist them in parenting a child with special health care needs, (f) provide information and training to enable families to better understand health care delivery models.
Highlighted Activity:
Resources to Promote Successful Transition

Description of Activity: Developed two tip sheets to help guide youth as they transition to adult health care:

Taking Ownership of Health Care: a 5-page handout that discusses:
  • What is meant by taking ownership of health care
  • Why it is important
  • Steps Involved
  • Preparing for transition from high school
  • Additional resources
Health Care and the IEP – a 2-page handout that discusses:
  • Documenting present levels of educational performance (PLEP)
  • Addressing needs identified in the PLEP/IEP
  • Transition timeline and IEP
  • Collaboration in IEP development
Problem Addressed: For students with disabilities and special health care needs, transition planning often occurs within the context of the school system. Successful transition planning requires that the impact of health-related needs be considered when planning for continued education, employment, and life in the community. The foundation for a successful transition plan is best laid early, allowing for a gradual development of the awareness, knowledge and skills necessary to support post-secondary success and dignity. Families, students, and educators benefit from information and practical tips to support young people in taking ownership of their health care needs and for incorporating necessary health-related planning into IEPs.

How Activity Was Developed: This activity developed out of our participation in public forums to increase awareness of the Healthy Transitions initiative in NYS. Nancy Hinkley of the Employment and Disability Institute at Cornell University provided expertise in the role of special education in transition planning.

Impact/Outcome: We learned that while schools are a focal point of transition planning, all participants in the process could use practical information about incorporating health-related goals as part of the transition plan. Additionally, we learned that families and educators could use support in considering the value of supporting young people in taking an active role in their health care early on and practical tips for doing so.
Shared Resources:
Resources are shared by the F2FHICs to help families, other family leaders and partners. While you are welcome to adapt any of the materials for your organization, we ask that you include an acknowledgement of the author/source in your adaptations and that you let the original author know of your use of the materials. Copyrighted materials may not be reproduced or adapted without the express permission of the author.
Taking responsibility and being able to advocate for one's own health care will be different for each person. However, for everyone, self-direction and autonomy are desired outcomes. For parents who have cared for a child and advocated for their child's health care, it is a shift to be guiding a teen or young adult as they move through adolescence towards more independence. Crucial to this is respecting and supporting an individual's responsibility for their own health care and their participation in decision-making. With funding from New York State's Family to Family Health Care Information and Education Center, the information included in this publication was developed to assist families and youth with special health care needs and disabilities. This 14-page handout discusses: Taking Ownership of Health Care; Addressing Chronic Health Care Needs in the IEP; Health Care and the IEP: Tips; Fostering Respectful Relationships in Education.
Taking responsibility and being able to advocate for one's own health care will be different for each person. However, for everyone, self-direction and autonomy are desired outcomes. For parents who have cared for a child and advocated for their child's health care, it is a shift to be guiding a teen or young adult as they move through adolescence towards more independence. Crucial to this is respecting and supporting an individual's responsibility for their own health care and their participation in decision-making. With funding from New York State's Family to Family Health Care Information and Education Center, the information included in this publication was developed to assist families and youth with special health care needs and disabilities. This 22-page handout discusses: Considering College: Tips & Facts; Fostering Respectful Relationships in Employment; The World of Work; What is Supported Employment.
This presentation was made by Michele Juda (NY) and Joni Bruce (OK) at the 2012 F2F HICs Grantee Meeting and provided an overview of:
  • Disability and Its Effects on the Family
  • The Parent-to-Parent approach
  • The infrastructure that supports Parent-to-Parent In New York State and Oklahoma and across the country
A 5-page handout that discusses: What is meant by taking ownership of health care; Why it is important; Steps Involved; Preparing for transition from high school; and Additional resources
A 2-page handout that discusses: Documenting present levels of educational performance (PLEP); Addressing needs identified in the PLEP/IEP; Transition timeline and IEP; and Collaboration in IEP development
NY Resource Highlight: