Aging out

Aging out

Brandon Stone, right, has been left in a vulnerable position simply because he turned 21 years old, says his mom Sherry, at left, and his visiting nurse Jessica Brady, standing. (Breeze photo by Ethan Shorey)
Local family says vulnerable son fell through state’s cracks

NORTH PROVIDENCE – Sherry Stone works 65 hours per week in construction. Her husband, Dennis, works long hours as a North Providence police officer and with a weekend restaurant job. She leaves for work around 5:30 a.m., he by 7:30.

For Dennis, his departure time can vary depending on what’s happening on the local crime scene. Sherry’s shift is supposed to end at a certain time, but if a hole in a gas line isn’t closed, she can’t leave.

The North Providence couple depend heavily on their visiting nurse, Jessica Brady, to stay with their 21-year-old son Brandon, the oldest of five children, who is severely medically complex and requires constant supervision and skilled nursing, physical therapy and occupational therapy.

“He can’t be left alone,” said Sherry.

Brandon has been able to grow up at home among his loved ones and pets, attend North Providence schools, and thrive due to his home care services, say his parents. He’ll turn 22 in January, and his family is still fighting to maintain his level of care.

“This should have been a smooth transition,” says Sherry.

That fight, they say, is because the state’s Department of Behavioral Healthcare, Developmental Disabilities and Hospitals program has not held up its end of the bargain: To make sure families understand their options when children such as Brandon turn 21, and to ensure that Rhode Islanders with complex medical conditions receive the care and services that they need and deserve to continue to live safely and independently at home.

Sherry said if the home care ever stopped, she would immediately have to quit her job. The state seems to think that just because someone such as Brandon reaches a certain age, they’re suddenly capable of functioning on their own, she said. Brandon and others are in danger of being left behind by a system that no longer seems to recognize that reality.

“You can’t let them fall through the cracks,” she said. “To me it’s a really big deal.”

The Stones emphasize that it’s often more affordable, and it’s almost always more beneficial, to keep someone such as Brandon at home, but they say there has been very poor communication on what their options are and they’ve been forced to go through all sorts of hoops just to make sure he still gets what he needs in that setting.

The process of continuing home care is supposed to start when someone is 17, but Sherry said she learned in February that nursing services would be ending on April 1. Brandon’s future care still isn’t resolved, she said.

“It shouldn’t be a constant battle,” she said. “There shouldn’t be any gaps in their services.”

David Levesque, director of public affairs at the Executive Office of Health & Human Services, said Monday that EOHHS can’t discuss specific cases due to state and federal health care laws protecting confidentiality.

“The state is committed to ensuring that the transition to adult Medicaid programs is done in a thoughtful and effective manner that best meets the needs of individuals and their families and is in accordance with state and federal law,” he said in a statement. “EOHHS has extended its current authorization for supports and services until Feb. 1, 2020, for individuals who have raised concerns related to transitioning. Meanwhile, a cross-functional team is studying ways to improve the state’s policies and procedures in this area.”

All Brandon ever did was grow up, according to his parents. Medical coverage changed on Brandon’s 21st birthday, resulting in significant changes to who pays for services, the types of services available, and amount of service he’s eligible for. Without proper planning and communication, these changes can result in uncertainty related to continuing care and access to home care services.

The Stones say they want the state to fulfill its obligations to families with better communication, and to come up with a long-term solution to solve the issue of vulnerable people aging out of the system.

“It’s very important that they stay home,” said Sherry, noting the insurmountable challenge it would be for Brandon to take a bus to a day care facility.

This issue needs a champion at the state level, said Sherry. She said state officials admitted to her that Brandon fell through the cracks.

Representatives for Bayada Home Health Care have taken up the case despite not having Brandon as a client, she said, going above and beyond in advocating at the Statehouse.

Sherry said she’s not even using a quarter of what she could be using for nursing hours, and she and her husband aren’t using the service “to do silly things.” She said she’s willing to go all the way in advocating for this issue.