Children and Families

Family to Family Centers provide information and other supports both to family members and to professionals who serve children and youth with special health care needs. This topic paper highlights innovative strategies developed by individual Family to Family Centers to develop partnerships to expand their reach, to enhance outreach to parents, to serve a culturally diverse clientele, to help youth prepare for transition, and to ensure organizational sustainability.

The CMS Systems Change conference, Transforming Systems: Keys to Success was held April 10-12 in Baltimore. Presentations from the 2006 sessions are available in both PDF and text formats. Topics range from ideas on system transformation, stakeholder involvement, coalition building, strategic planning, sustaining systems change, and the Deficit Reduction Act. Full titles are listed in the keywords section.

Parent to Parent and Family Voices are proud to announce the new Family to Family Health Information and Education Center called the Virginia Integrated Network of Family Organization or The VA-INFO Center. The center provides youth and parents of children with special needs, service providers and others one place to call to get information and referrals, parent to parent peer support, annual family support conference, and other training opportunities.

This paper describes the activities of the 19 Grantees funded in fiscal year 03 and 04 from CMS and six Grantees funded in fiscal year 02 by the Maternal and Child Health Bureau (MCHB). F2F Health Information Centers assist families of children with special health care needs. This paper provides information states and stakeholders will find useful when planning or implementing similar initiatives. Read about the grant activities, implementation challenges, and accomplishments.

This Care Coordination Notebook helps families manage the care and growth of their child as they are involved with the many professionals who offer assistance and expertise. This notebook is designed to offer families basic information and a framework to help you gather information and coordinate care for children with special health care needs. The guide includes basic informational overviews, sample letters, and Take Action Forms.

The Compendium contains basic information about each of the Real Choice Systems Change Grantees. The Compendium will help you learn more about how these grants will be used to allow more people of all ages with a disability or long term illness to live and participate in their communities. Real Choice Systems Change Grantees will also find the Compendium useful to identify other Grantees with similar goals and activities. The fifth edition of the Compendium replaces all previous editions.

Committed to creating opportunities for youth with disabilities to achieve successful futures, NCSET coordinates resources, offers technical assistance, and disseminates information. Their website offers events, publications, data, essential tools and resources to increase the capacity of organizations involved with the transition of youth with disabilities.

Family Voices of North Dakota has developed two handbooks. The intent of the booklets is to help families with resource questions and offer a way to record the information they gather. New Beginnings is a guide of referrals and contacts. Care Notebook is an organizing tool for keeping track of important information about a child’s health care. Although this material is specific to North Dakota, other Family to Family grantees may find the guides useful when replicating resources.

The WV Real Choice program is providing incentive funding to parent/family based organizations. The funds will be awarded to organizations such as Parent Educator Resource Centers, WV Parent Training and Information, Family Resource Networks and other family-based organizations to implement best practices in middle and secondary education regarding youth transition that use a person-centered approach. This RFP is an great example for other states structuring similar requests.

New York’s Family to Family Real Choice Grantee, Parent to Parent has compiled a group of publications to assist families with children with special health care needs in understanding the complex system naviagate. Titles include: Understanding Health Insurance, Prescription Tips From Parents, Financial Aid, Researching Health Care Information on the Internet, Selecting a Doctor, Section 504 Fact Sheet, Understanding Medicaid and Tips For Handling Medical Appointments.