Dylan Trinkle is 3 years old, and he has yet to say his first word or walk on his own.

Instead, his parents celebrate other milestones. Sitting up. Pulling up to stand. Taking a few steps.

At 15 months old, Dylan was diagnosed with Angelman syndrome, a genetic disorder characterized by developmental delay and neurological problems that occurs in one in 15,000 births.

"Through early intervention, he got a real solid foundation," his mother, Jennifer Trinkle, said.

Dylan's pediatrician first noticed something wrong with the child's eye when he was 6 months old and referred him to specialists. Blood work led to an electroencephalogram — an EEG — which studies electrical activity in the brain. The test found that Dylan has Angelman syndrome.

Haven't heard of it?

"We hadn't, either," Dylan's mother said. "We were stunned. You're learning how to be a parent, and you're given a diagnosis like that."

And so began the Newport News family's journey into Virginia's intellectual and developmental disabilities system.

It's a system that has recently come under fire by the U.S. Department of Justice for housing people in state institutions needlessly, a violation of their civil rights. The reason many are housed in state institutions is that there isn't enough funding for services in the community to meet the need. This is the first in a series of five stories exploring the services available in the community for people with intellectual and developmental disabilities and identifying the system's shortcomings.

Starting early

Early intervention is important because it may keep people from needing more services — such as state institutions — later on, which can save taxpayers' money, said Julie Palmer, children's services director for The Arc of the Virginia Peninsula.

The Arc's Early Prevention and Intervention for Children program, known as EPIC, is responsible for coordinating early intervention services for Newport News and Hampton children up to age 3 whose families do not qualify for Medicaid. Case management of Medicaid-eligible families is handled by the Hampton-Newport News Community Services Board.

The brain is very impressionable during the first three years of life, Palmer said.

"If we push them as far as they can go with their skill development now, they will need fewer services later on," she said.

The program coordinates therapies tailored to each child and helps connect parents to resources, such as where to find adaptive carseats and developmental playgroups, she said.

One of the biggest problems with the early intervention system is paying for in-home assistance that may be needed to keep the child living at home. About 55 percent of the families EPIC works with are military families, who often make too much money to qualify for Medicaid. Although the child may have significant disabilities, the families may not have access to needed resources, she said.

Another problem is that children aren't being referred to early intervention promptly. Sometimes, pediatricians tell parents who are worried that their 18-month-old isn't speaking to wait until the child turns 2. That delays intervention and often results in the child needing more intensive and costly services later, Palmer said.

"If you think your child has a developmental concern, please call. We can do a free developmental screening. We can do that anytime, as often as they need us to," Palmer said.

Therapy for Dylan