He suffered a brain injury because of his heart condition, Taylor said. He takes medicines that cost about $2,000 a month and gets continuing medical procedures that cost anywhere from $15,000 to $32,000. His health expenses have run about $2 million, she said.
The family gets some medical coverage through a federal program for middle-income families, but the financial strain has been tremendous, Taylor said. Once Henry emerges from the waiting list, she hopes he’ll get medical assistance, vocational and job search training, independence-skills training and other services.
“Best case scenario, he will be 17, 18 years old before he gets services,” Taylor said.
Taylor said she wants her son to live in the community and be a productive member of society, which she said more services would help him achieve.
“These services are incredibly important for us,” she said. “I just want my kid to have a great life like I want for my other kids.”
Since the 1980s, Oklahoma and the rest of the nation have been shifting their approach to caring for the developmentally disabled from an institutional one to home and community-based care.
Between 1985 and 2010, the number of people with developmental disabilities in large, state-run facilities declined by 82 percent in Oklahoma and 72 percent nationally, according to the University of Minnesota study. Residents were moved into family settings or community homes, which have a handful of disabled people, and services were provided there.
States have embraced the model because many of the disabled and their families prefer in-home care, and the state views it as a lower-cost alternative, although the latter is debated.
As part of this trend, Oklahoma will close the Southern Oklahoma Resource Center in Pauls Valley in 2014 and the Northern Oklahoma Resource Center in Enid in 2015. Some family members have protested.