Imagine spending most of your childhood on a waiting list for life-changing services. The services you need are there, in your community, but you’re told to wait in line with more than 13,000 other Virginians. Your parents are told to wait, knowing your care, and your life, will improve once it’s your turn. But you are not considered a “priority,” and so you wait … for 16 years.
Nick Schmitt is almost 24 years old. He is friendly and kind. He likes to play sports and be social.
“Nick is a happy person … just happy to be part of it all,” said Debra Schmitt, Nick’s mom.
Nick was born with hypoplasia of the corpus callosum, meaning he is missing some fibers that connect the sides of his brain. He has autism, epilepsy, and other diagnoses. He needs someone there to care for him 24/7. During Nick’s childhood, Debra and his father Michael struggled to find the care he needed.
“We had so much trouble trying to find the right person to watch Nick,” said Debra. “It was an uphill battle.”
At that time, Nick did qualify for a smaller-scale Medicaid waiver from the state, the Commonwealth Coordinated Care (CCC) Plus waiver. It helped and his parents were so grateful for any amount of support, but they knew he needed more—more help, more care, more support. They needed the Community Living waiver, which would provide access to the residential services Nick needed.
This year marked a major milestone for Nick. After so many years of waiting, he received the Community Living waiver. His parents found DePaul through a friend and became sponsored residential providers, or as we like to call them compassionate caregivers, for him.
“ It was like hitting the lottery—totally life-changing,” said Debra.
These days, Debra and Michael can give Nick the life, and care, he deserves. It’s not easy, and it’s not without bumps in the road. It takes work to be a compassionate caregiver for your child. But as Debra says, the work is worth it.
“It is worth every hour that I type notes and fill out forms,” said Debra.
When she thinks back on those years of waiting, Debra remembers the frustration at the process, the frustration at the limits placed on her son, the circumstances outside her control. Her advice to anyone feeling that same frustration: do as much as research as you can, stay vocal about your child’s needs, and find the people in your community who want to help and be there as you navigate the wait.
If the Schmitt family’s story has inspired you to take action in your community, we invite you to join DePaul’s advocacy efforts as a volunteer. Together, we can be partners in policymaking and work to extend hope and belonging to all Virginians. If you are interested in learning more about how to get involved, please contact Emily Moore, legislative advocacy committee chair, at firstname.lastname@example.org.