Family-to-Family Health Care Information and Education Centers

NORTH CAROLINA

Grant Information


Name of Grantee

The Exceptional Children's Assistance Center

Title of Grant

Family-to-Family Health Information Center Planning and Training Grant

Type of Grant

Family-to-Family Health Care Information and Education Centers

Amount of Grant

$150,000

Year Original Funding Received

2004

Contact Information


Connie K. Hawkins, Executive Director
704-892-1321
chawkins@ecacmail.org

Grace Sisco, MPH, Project Coordinator
907 Barra Row, Suite 102-103
Davidson, NC 28036
704-892-1321 ext. 11
gsisco@ecacmail.org

Subcontractor(s)

None.

Target Population(s)


Children with special health care needs (CSHCN) and their families.

Goals


  • Increase the amount of information, education, and training available to assist families of CSHCN to meet these needs.
  • Enhance the capacity of existing organizations and agencies to serve CSHCN and their families.

Activities


  • Determine the information and education opportunities currently available to families of children with special health care needs and identify information and education gaps.
  • Identify and catalogue agencies and organizations providing education, information, or referrals to families of children with special health care needs, as well as the type of information and services they provide.
  • Identify parent information and education needs, review available resources, and develop or revise existing information and education materials to address these needs.
  • Review and catalogue available materials and education curricula and develop and distribute materials in Spanish.
  • Provide the families of children with special health care needs information, education, and training on health care, home and community long-term services and supports, eligibility for public programs and benefits, and referrals to programs for which they may be eligible.
  • Develop train-the-trainer education programs.
  • Provide accurate, accessible, and usable information and educational materials to organizations and agencies serving families of children with special health care needs.

Abstract


North Carolina has many organizations and agencies providing information and education in an uncoordinated manner. For the first several months of this grant, project staff will conduct surveys with families of children with special health care needs, agencies, and other organizations to determine the level and type of information and education needed. The second step in project implementation will be to analyze the information and educational resources available, prioritize information needs of families, and identify needs and gaps in information.

The process of prioritizing information and educational needs and gaps will be accomplished using a variety of methods including surveys and focus groups with organizations and parents in different parts of the State representing urban/rural and diverse families.

After the information and education priorities and gaps are identified, grant staff and their grant partners will develop a basic information packet, and an information and referral guide will be produced that will include newly created materials from partner organizations and publications from existing national resources. Topics will be based on the needs assessment but could include subjects such as working with providers to create and maintain a "medical home" environment for delivery of health care services; using available health insurance resources to cover health care needs of children with chronic illness, disabling conditions, or other special health care needs; and accessing Medicaid wavers and the Children's Health Insurance Program (CHIP). Materials will be produced in multiple formats and translated into Spanish to reach as many people as possible and address the language and literacy barriers that exist within the State.

In addition, grant staff will conduct train-the-trainer sessions for members of the Special Needs Federation and Family Advisory Council and additional training sessions for statewide organizations targeting families from underserved areas or populations. At least one workshop will be conducted in Spanish for organizations and agencies serving native Spanish-speaking families.

The grant project will not replace existing information networks, but will provide information, training, and technical assistance to enhance the capacity of existing information networks and improve the quality of information and referral being provided.