Parents' fight for disabled son's care could impact others

Jonathan McCrann walks with a limp and has little use of his left hand. His communication skills are also limited. The 28-year-old is mentally retarded, has cerebral palsy and autism and is legally blind, according to his parents.

“Days after he was born, doctors came to our room and said, ‘We think you should put him in an institution,’” said Kelly McCrann, his mother.

“I just said, ‘We’re not putting this kid in an institution,’” added his father, Mike McCrann.

Growing up, Jonathan McCrann needed assistance with everything, and the state helped pay for his care. His parents said they witnessed an incredible transformation in their son at age 13 when Edna McNeil became his caregiver.

“He just crawled out of the dark,” Mike McCrann said. “He was functioning.”

Their son was able to brush his teeth, get dressed, open car doors and buckle his seat belt, according to his parents.

To help prepare their son for the day they are no longer around, the McCranns made the tough decision to place him in a nearby group home when he was 21. McNeil continued to work with him five days a week.

Then, in 2006, the state changed its policy and determined that only someone who worked with the group home could provide Jonathan McCrann’s services, meaning McNeil was out.

“(It) made no sense whatsoever. It was mean-spirited,” Mike McCrann said.

The McCranns took the state to court, a challenge their attorney, Jim Conner, described as “a case of David vs. Goliath.” Conner said the state’s decision was a clear violation of patients’ rights.

“(The state) conceded he needed the services. They conceded it wasn’t a financial issue. This is not a budget issue,” Conner said.

The courts determined the rule change was arbitrary, capricious and erroneous, and the state Department of Health and Human Services lost both of its appeals.

“I haven’t seen a case of bureaucratic arrogance that rivals this one,” Conner said, adding that he believes the judge’s ruling could affect thousands of people statewide.

Vicki Smith, executive director of Disability Rights North Carolina, said she blames the state Department of Health and Human Services for taking knee-jerk actions for years without considering the big picture and long-term consequences.

“I think (this case) has huge significance,” she said. “We’re certainly looking at this decision as a tool in our toolbox to challenge decisions that are made.

State Department of Health and Human Services’ officials would not speak on camera, but released a statement saying, "We are reviewing the ruling, but since there is still a potential for litigation, we can not offer further details on the case at this time.”

“I don’t know that it’s sinister or what it is, but it’s obvious from our experience that they don’t care about the people they’re serving,” said Mike McCrann.

The McCranns paid McNeil to care for their son while the case was tied up in the courts, but a judge will soon determine how much they should be reimbursed. McNeil has been working with Jonathan McCrann for 15 years.

The McCranns said they feel like their son is safe now.

Their case could impact how the state deals with the upcoming budget shortfall. Legal experts say the court’s ruling will force the Department of Health and Human Services to take much more time to make changes to certain programs and services.