Kentucky families with special-needs children will soon have extra help in navigating the complicated medical system.
Parent mentors will be trained to help other families sort through the many challenges of getting complete and correct services for their special-needs children, said Becky Cecil, executive director of the Kentucky Commission for Children With Special Health Care Needs.
Twelve Family-to-Family Health Information Centers will be established across the state through a $100,000 grant from the U.S. Department of Health and Human Services' Health Resources and Services Administration.
The centers operate out of the commission's 12 existing offices, which serve about 9,000 special-needs children a year. Cecil said there are 182,000 special-needs children in Kentucky.
The first five centers — in Hazard, Lexington, Louisville, Owensboro and Paducah — should be in operation by December, Cecil said. Centers will be established after that in Ashland, Barbourville, Bowling Green, Elizabethtown, Morehead, Prestonsburg and Somerset. The state hopes to extend the grant for two additional years, she said.
Cecil said the commission already has physicians, nurses and social workers. But, she said, "oftentimes, the combination, however helpful we wish to be, is overwhelming."
She said the parent mentors are "been there, done that" kind of mentors, who know firsthand how tough it can be to deal with a special-needs child and find the strength to "wake up tomorrow and do it all over again."
Examples of assistance include how to find out whether a drug company has a program that might provide their child's medicines for free and how to find the right counseling services.
The co-directors of the program — Debbie Gilbert of Louisville and Sondra Gilbert of Owensboro, who are not related — are mothers of children with special needs.
"The services in our state are very complex and difficult to navigate," Debbie Gilbert said. "These mentors will help anyone who has any kind of question.
"I've always found the best information and the best resources from other parents," she said.
Parents interested in being mentors will be provided training and a small stipend to offset some expenses, such as travel.