No matter what the diagnosis, when you receive unexpected medical information or your child misses a developmental milestone, the road ahead can seem terrifying and lonely. Family Connection of South Carolina is a statewide nonprofit organization that connects families of children with special health care needs, disabilities or chronic illnesses with resources, support and education, arming parents with the tools that they need to feel educated and supported.
One of the cornerstones of Family Connection’s services is peer-to-peer support, which matches parents whose children have received a recent diagnosis with a mentor family that has received a similar diagnosis.
“Parents can often feel stress, isolation and overwhelmed when they receive a diagnosis,” explained Jacki Garbinsky, Family Connection’s marketing and events manager.
The program works to ease parents’ fears by providing them a connection with someone who understands what they are going through and, sometimes even more importantly, someone they feel comfortable opening up to. Having recently celebrated its 30-year anniversary, Family Connection is fortunate that many of the parents involved in the mentorship side of the program have experienced peer-to-peer support from the other side of the table as well, allowing them to have a broader understanding of their mentees’ experience.
Another essential service provided by Family Connection is assistance navigating the health care system. Figuring out which treatments are covered by private insurance, which are provided by Medicaid and filling out numerous applications – some more than 50 pages long – are all skills that these parents are going to have to master, on top of coping with their child’s diagnosis and the special attention the child may require. Family Connection offers the help of staff members who are experts in navigating the health care system, taking the burden of learning the ins and outs off of parents.
The majority of families taking advantage of Family Connection’s services are referred to the organization between the birth of their child and age 5. However, the organization works with those up to age 26 and prides itself in assisting families throughout many of their children’s most important milestones – like starting school.
“Working with your school on a special education plan that will meet your child’s needs can be challenging,” shared Garbinsky. “Our staff members help families know what to expect and can join them at meetings as an advocate.”
Over the course of the past year, the experience has changed, but Family Connection has worked hard to pivot its services in order to continue to help families in need, including virtual peer-to-peer support, trainings and meetings with staff. Last year, the organization was forced to cancel one of its most popular events, the LOOK! Photography Exhibit, but this popular event will be enthusiastically welcomed back in 2021. The exhibit features photos of 40 to 50 families with disabled or chronically ill children, with a goal to promote inclusion and help people see the abilities of the children. Families across the state participate, and their photos are unveiled to them for the first time at the opening night party, which will be held in Columbia this summer. Currently, prints from previous years are displayed in the Columbia airport, and this year Family Connection hopes to take the gallery on the road, spreading its message throughout the state for all South Carolinians to enjoy.
For more information, visit familyconnectionsc.org.