Delaware Family Voices (DEFV) is dedicated to helping families of children with chronic medical conditions. As an ongoing part of DEFV’s effort to support these families, through a grant awarded to the Department of Public Health, and in partnership with Family SHADE, DEFV has created the Parent Partners Program.
What is the Parent Partners Program?
The Parent Partners Program is designed to identify and access non-medical resources to further assist families with chronically ill children. Resources from emotional support to insurance assistance to recreational opportunities, and more, can make major improvements in the challenging lives of these families.
DEFV supports families of children with special health care needs to become informed, experienced, self-sufficient advocates for their children and themselves.
DEFV also stresses a family-centered approach to help families better cope with their children’s health condition. The Parent Partners Program is an extension of this approach. The program’s primary goals include:
- Assist DEFV in assessing the unmet, non-medical needs of Delaware families of children with chronic health conditions.
- Identify and access resources for these families.
- Make valuable resources available to as many families as possible.
Through this program, DEFV and trained Parent Partners will work together to identify resources for these families as well as work within the local communities to develop specific organizations and systems to better serve the families.
Who are Parent Partners?
Parent Partners are parents of a child or youth with special health care needs (CYSHCN), and in particular, parents of children with any type of diabetes, a chronic respiratory condition or a chronic cardiac condition. The child may have additional co-existing conditions, but the initial focus will be with these three chronic conditions. They will serve as representative of the much larger, diverse group of CYSHCN.
What are the roles of a Parent Partner?
Parent Partners will:
- Complete the Support Parents training in the Parent to Parent** training program offered by DEFV.
- Complete a survey on the unmet non-medical needs of children with special health care needs.
- Assist DEFV in the distribution of the survey to physicians and to other parents of CYSHCN.
- Participate in at least one focus group discussion.
- Assist DEFV in the collection of information from families on the unmet needs of CYSHCN and the availability of resources for these families.
- Assist DEFV in developing recommendations to address these unmet needs in preparation for presenting to local service providers, policy makers and others.
Parent Partners may receive a stipend as well as travel expenses for their participation in the Parent Partner program.
Who can be a Parent Partner?
Do you live in Delaware and have a child with one of the following chronic medical conditions?
- Diabetes, any type
- Chronic respiratory conditions
- Chronic cardiac conditions
If so, would you consider becoming a Parent Partner, and help DEFV support other Delaware families with children with chronic medical conditions?
If you, or someone you know, might be interested in becoming a Parent Partner, please contact Kerry Doyle-Shannon, the Parent to Parent Coordinator for Delaware Family Voices, at p2p@defv.org, or #302-221-5361.
**Additional details for the Parent to Parent Program: Parent to Parent is a national program that provides emotional and informational support to families of children who have special needs, most notably by matching parents seeking support with an experienced, trained “Support Parent.” DEFV is the Delaware branch of the national Parent to Parent program.
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Images from the Parent-To-Parent website.