Project Description:
The Paths For Parents Program was created as part of the West Virginia Title V Block Grant from the Office of Maternal, Child, and Family Health. It is a collaborative effort between Children with Special Health Care Needs (CSHCN) and the West Virginia University Center for Excellence in Disabilities. This statewide program includes regionally-based Parent Network Specialists and a Dietitian that works in partnership with CSHCNs coordinated care teams that include nurses and social workers. These comprehensive care teams work with locally enrolled CSHCN families to provide nutritional, medical, educational, vocational, and transitional service coordination. Our Dietitian conducts nutrition and feeding assessments, provides consultative services, and gives technical assistance to children and adolescents with chronic illnesses, from birth to age 21. Four Parent Network Specialists, who are themselves parents of CSHCN, provide unique peer to peer support and advocacy coaching for parents who are navigating the systems of care while building disability awareness in communities. Parent Network Specialists (PNS) assist individual families in becoming better advocates for their children by serving as advocacy coaches when difficult situations arise in school, in the medical system, or within the community. They can provide organizational tools that empower parents to best represent their childs needs. The PNS provide peer to peer support through parenting groups and encourage connections with other CSHCN parents. Our approach is to build capacity within a supportive network of parents/caregivers and specialists which link families of children with special health care needs to a broad spectrum of resources within their regions of the state. PNS conduct Family Focus meetings that are used as a way to better understand the service gaps and barriers families are experiencing. The Paths For Parents Program also includes two Disability Resource Libraries, located in the northern and southern regions of the state and has a full time media specialist that supports the efforts of this program and provides resources on loan to persons with disabilities, their families, and the service providers who work with them. All three components of the Paths For Parents Program (Dietitian, Parent Network Specialists, and the Media Specialist) provide direct services, information & referral services, and follow-up services to individuals with disabilities and their families.
Keyword(s):
CYSHCN Children with Special Health Care Needs Nutrition Care Coordination
Core Function(s):
Training Trainees, Performing Research or Evaluation, Developing & Disseminating Information, Continuing Education/Community Training
Area of Emphasis
Quality Assurance, Education & Early Intervention, Child Care-Related Activities, Health-Related Activities, Transportation-Related Activities, Recreation-Related Activities, Quality of Life, Other - Assistive Technology
Target Audience:
Community Trainees / Short term trainees, Professionals and Para-Professionals, Family Members/Caregivers, Children/Adolescents with Disabilities/SHCN, General Public
Unserved or Under-served Populations:
Racial or Ethnic Minorities, Disadvantaged Circumstances, Limited English, Geographic Areas, Rural/Remote, Specific Groups
Primary Target Audience Geographic Descriptor:
State
COVID-19 Related Data:
N/A
