Parent Advocacy

The Office for Children with Special Health Care Needs (OCSHCN) staff includes a family consultant who helps families find resources, facilitate communication with other staff members, and support parents seeking services for their children.

The family consultant is a parent of special needs children. They provide OCSHCN with a parent perspective and enhance OCSHCN efforts to connect other agencies that serve children and families.  Family consultants, and KY-SPIN representatives, are on site at some clinics to be an immediate resource for families.

Family to Family Health Information Centers

Since 2009, OCSHCN has received a Family-to-Family Health Information Center (F2F HIC) grant which allows OCSHCN to have an F2F HIC center that has support parents (mentors) who are also parents of special needs children. Support parents are a key support to families of individuals with special needs. Through the F2F program, parents/caregivers are offered the opportunity to connect one-to-one with a parent/caregiver of an individual with the same or similar special health care need -- someone who has been there.

What is a Support Parent?

A support parent is a veteran parent or primary caregiver of an individual with special health care needs willing to help other families in situations they have faced. A support parent is a person who wants to reduce the feelings of isolation for other families of individuals with special health care needs and allow others to benefit from their experiences. A support parent provides a safe listening environment and a wealth of information to other families.

Parent Involvement

Parents of OCSHCN patients are involved in:

  • OCSHCN's needs assessment planning for all Kentucky children with special health care needs
  • Parent Advisory Council meetings
  • agency strategic planning
  • evaluation of OCSHCN's ability to encourage family participation

In addition to the needs assessment, OCSHCN has established a goal to identify and develop family leaders for ongoing participation and partnership. Mentoring for families who wish to become active leaders will be provided through the Family-to-Family Health Information Center.

Best Practices

Best practices that guide the Office for Children with Special Health Care Needs in serving the families of children with special health care needs are:

  • Families of children and youth with special health care needs partner in decision-making and are satisfied with the services they receive.
  • Community-based service systems are organized so families can use them easily.

Parent Advisory Council

Parent Advisory Council (PAC) members are parents of children with special needs. Your child does not have to be a OCSHCN patient to be eligible to apply to be a PAC member.

You can reach the following Parent Advocacy and Involvement staff by calling:

  • (502) 429-4430, or toll-free, (800) 232-1160 (Lee Gordon, ext. 2002), or
  • (270) 687-7083, or toll-free, (877) 687-7038 (Sondra Gilbert, ext. 3)