The Next Big Step: Helping Children With Special Healthcare Needs Transition to Adulthood

Most parents start planning for a child to leave the nest around his or her junior year of high school. Their family becomes busy with activities like scouting colleges, applying for financial aid and securing temporary housing. But eventually, the adult child strikes out on his or her own, and the parents’ role becomes minimal.

This life stage plays out much differently for families of children with special needs. These parents must start planning their child’s transition to adulthood many years in advance, while addressing unique support needs that other families wouldn’t have to consider. And this process is an ongoing one that lasts long after the child graduates or reaches a certain age.

“There’s so much you have to consider for kids with special needs that you don’t have to for other kids,” said Kerri Eaker, family support outreach coordinator for the Family Support Network™ of Western North Carolina at Mission Children’s Hospital. “You have to think about whether they have the mental or physical capacity to live independently. You have to wonder if their lack of certain life skills will make them vulnerable to being victimized. You have to figure out what kind of support they will need if and when you’re not around. These are all things that require a lot of research and planning.”

A Network of Shared Experiences

Support is essential for both children and parents to navigate the transition to adulthood. The Family Support Network of WNC offers comprehensive guidance for families, as well as camaraderie and one-on-one support.

Becky Demmer, a Hendersonville resident, found the service invaluable in planning the transition to adulthood for her two sons, Chris (age 31) and David (age 25). Their family started the process when each boy was in his early teens.

“We started working with the Family Support Network really early on,” said Demmer. “Chris had just started Asheville High School and David was in Asheville Middle School. One of the biggest helps was the parent-to-parent match. It really allowed the families to learn from one another’s experiences.”

Demmer was also proud to be part of a group at the Family Support Network that helped create a transition-to-adulthood resource guide. “It’s a directory that has input from teachers and service providers throughout the community,” she explained. “It goes through every scenario a parent will need to know about—from medication to employment to funding—and offers resources that can support those specific needs.”

Chris is now taking college classes and living in his own apartment through the Key Program, and David is living partially on his own. Both young men have part-time jobs. Demmer points out that the transition to adulthood is an ongoing process.

The Perkin family of Asheville is currently early in the process. Their son Bill (age 18) still has three more years left at AC Reynolds High School. “Graduation isn’t imminent for him, but I’ve started looking at what that transition will be like,” said Louisa Perkin. “I know what Bill’s life looks like now, but I want to have a better handle on what it’s going to look like once he graduates. There’s been a big learning curve, and I’m realizing how important it is to have support and resources.”

Perkin volunteers at the Family Support Network, so that she can assist other families going through a similar process, while also continuing to learn about the support available.

Resources for Families

The Family Support Network has numerous resources available to families who have a child in transition to adulthood. These include:

  • The Transitioning into Adulthood Guide
  • Parent-to-parent support
  • Youth activities, including self-advocacy and social skills classes
  • Informational literature, packets and forms
  • Family group night each month
  • Transition-to-adulthood fair in October

Perkin said the transition-to-adulthood fair was particularly helpful to her. It features informational booths and presentations from support providers throughout the community. Some of the primary topics covered at the fair include guardianship, estate planning, vocational services, housing, Medicaid coverage and supplemental Social Security income. This year, the Family Support Network will have a job fair.

Eaker said another helpful aspect of the Family Support Network of WNC is that it’s staffed by people who have gone through this process. “I’m the parent of a special needs child; all of us here have lived experiences,” she said.

“I was very close to several of the people there,” said Demmer. “They had already gone through a lot of this, so I could always call them and get advice and answers. It’s a very good feeling to know you’re not alone. Otherwise, you feel lost.”

Perkin said she appreciates the supportive environment in which Eaker has often helped her “mom-to-mom.” She also likes that, despite the shared experiences, she can find resources best suited for Bill’s unique situation. “There’s no cookie-cutter solution for each family,” she said. “They open you up to the variety of resources available so that you can identify what best meets your child’s needs and your family’s needs. That’s what’s most important to me—to have the tools that will help our son have a meaningful life ahead of him in adulthood.”

The Family Support Network of WNC at Mission Children’s Hospital offers an extensive lending library of resources related to raising a child with a wide variety of developmental, physical and medical concerns. Our team provides a formal Parent-To-Parent Match Program for parents and caregivers as well as monthly Family Group Nights and educational workshops. The network also provides experienced staff support with information, resources and navigation of community services. The Family Support Network is located at Mission Children’s Hospital Reuter Outpatient Center. We accept referrals from the child’s primary care physician, community agencies, schools or self-referrals. To learn more about our services, call (828) 213-0033 or visit missionchildrens.org.

Kerri Eaker is a family support outreach coordinator for the Family Support Network of Western North Carolina at Mission Children’s Hospital. (828) 213-0033

By Jennifer Sellers

About Shelby Harrell

Shelby Harrell is the news editor of the Biltmore Beacon, editor of The Guide arts and entertainment publication and is a staff writer for Mountaineer Publishing. Originally from Asheville, she has worked in journalism for more than six years and currently lives in Clyde, NC.