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Parent Advocacy

The Commission staff includes family consultants who help families find resources, facilitate communication with other staff members and support parents seeking services for their children.

Family consultants are parents of special needs children, providing the Commission with a parent perspective and enhancing Commission efforts to connect other agencies that serve children and families.

Resources available to parents include a computer at each Commission clinic site for use in research and advocacy. KY-SPIN and ARC of Kentucky representatives also are on site at some clinics.

Family to Family Health Information Centers

The CCSHCN has received a Family-to-Family Health Information Center (F2F HIC) grant to create centers at commission offices staffed by support parents (mentors) who are parents of special needs children. Support parents are a key support to families of individuals with special needs. Through our program, we offer parents/caregivers 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 of primary caregiver of an individual with special health care needs willing to help other families in situations similar to those 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.

Support Parent Family Information

More information about F2F HIC Parent Mentors

Parent Involvement

Parents of commission patients are becoming involved in:

  • commission's needs assessment planning for all Kentucky children with special health care needs;
  • agency policy and procedure committee; and,
  • evaluation of the commission's ability to encourage family participation.

Goals to expand parent participation include:

  • regular presence of a parent consultant at each commission office;
  • expanded resource libraries; and,
  • creation of a Parent Advisory Board.

In addition to the needs assessment, the commission 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 partnership with organizations such as KY-SPIN and the Parent Resource Centers.

Best Practices

Best practices that guide the Commission 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 who are served or have been served  by the commission. Your child does not have to be a commission patient to talk with a PAC member.

Contact PAC members by email

You can reach the following Parent Advocacy and Involvement staff by phone at (502) 429-4430, or toll-free, (800) 232-1160:

Debbie Gilbert, ext. 279
Lee Gordon, ext. 228

You can reach the following Parent Advisory Council members by contacting Sondra Gilbert at (270) 687-7038, or toll-free, (877) 687-7038, ext. 2123. Sondra will forward your information to the PAC member you wish to contact.

PAC Member

Area of Interest

District

Beth Anderson

Down Syndrome

Somerset

Jennifer Crawford

 

Paducah

Sandra Davis

Sickle Cell Anemia

Louisville

Dana Dicken

 

Louisville

Sherry Mays

Cerebral Palsy, Cleft Lip/Cleft Palate, Hearing Loss

Morehead

Valerie Morton

Dandy Walker Syndrome

Elizabethtown

Linda O'Leary

Hearing Loss

Owensboro

Anne Weaver

CP, Seizure Disorder, G-tube, Chronic Lung, Educational Issues

Louisville

Karen White

Developmental Disability,
Seizure Disorder

Louisville

Debbie Wright

 

Louisville

 

See Also...
  The ARC of Kentucky

Bridges to the Future Transition Program
The Bridges program encourages transition from pediatric to adult care by encouraging early discussion between parents and youth.

KY-SPIN
Kentucky Special Parent Involvement Network

National Dissemination Center for Children with Disabilities
The center is a central source of information on disabilities in infants, toddlers, children and youth, IDEA (the law authorizing special education), No Child Left Behind (as it relates to children with disabilities) and research-based information on effective educational practices.

PACER Center

Parent Resource Centers
 

Last Updated 11/21/2012
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