For some people, time spent on the waiting list to get aid for developmental disabilities can seem like a lifetime.
For others, it practically is a lifetime.
Daniel Ferguson spent eight of his short 11 years of life on the waiting list. Just two months after he left the list and was granted access to state-paid services, he died.
When Daniel was born, it was clear he had developmental issues, said his father Rob Ferguson, of Oklahoma City.
“From the first moment, we knew he was going to have a hard time,” Ferguson said.
Main story: As Years Pass, Developmentally Disabled Wait for Help
Daniel had a chromosome disorder, cerebral palsy and profound epilepsy, and he was severely delayed in development, Ferguson said.
Daniel never spoke, but loved to try singing along with opera. He loved classical music, watching football and golf on television, meeting new people and going on car rides.
Around age 6, however, after Rob and Kathleen Ferguson had signed up for the waiting list, Daniel began to regress. He no longer made progress on sorting skills, and he began to lose interest in achieving goals.
“At that point, we really began to think we could use some help here,” Ferguson said. “That’s when we really started to hope they could get to us with some kind of services that would enable us to feel like we could keep him at home and less like we might have to send him away.”
The thought of sending his son to an institution was frightening for the Fergusons.
“We very much wanted him at home,” Rob Ferguson said. “When we started with him, it was a no-brainer. Then in the last five or six years we started to think how his mom and I are getting older, and wondering how much more energy we would have for this.”
In February, Daniel’s name finally came up on the list. A care worker began coming by to work with Daniel in the daytime, giving Kathleen a much-needed break.
With the waiver, plans were made for architectural changes, including adding a new wheelchair ramp and a track system to help transport Daniel around the house.
Those projects wouldn’t get done.
About two months after emerging from the list, Daniel went into cardiac arrest and died on April 4.
Ferguson said he doesn’t know if getting the waiver earlier would have extended Daniel’s life, but it would have made his and his parents’ lives easier.