Funding shortfall 28 days in the ER

EXETER - Ann Sanok is calling on the state to increase its funding for people with developmental disabilities after her adult son spent nearly a month in a secure Exeter Hospital emergency room waiting to be transferred to a residential facility.

"His situation presents a dual challenge for the state which has weak funding and services for the developmentally disabled," Sanok said about her 22-year-old son Alex. "And having to be warehoused in a hospital is a doubly sad state of affairs, I believe, for a person who is autistic and intellectually disabled."

Sanok explained that her son intellectually is "like a 7-year-old," but he's also "6-feet tall and getting bigger."

"When he got older, he definitely got harder for us to manage, he got very aggressive," she said.

He received day-time services through the state Bureau of Development Services and lived at home.

But her son began getting "very aggressive" during April and May, Sanok said, in no small part because "he was driven around all day-long" from one service to another.

"He became angrier and angrier at me and my husband and then he stopped wanting to leave the house, but we kept being told there's no residential options," she said.

Throughout April and May, Alex "broke a ton of windows and cut himself," Sanok said, and she and her husband became convinced he needed to go full-time to a residential facility.

But Sanok was told there was no additional help available, "unless there's a crisis."

Her son's behavior got progressively worse until they felt they had no other choice but to call the police.

"The day in question he had been getting worse. He was just angry and smashed a couple more windows. He was just so agitated," she said. "It was almost like he was out of his mind. He'd just glare at me. Normally we could calm him done, but we couldn't that day."

"I basically just walked to the phone and called 911," she said.

The police arrived at their Exeter home and took Alex to the hospital, where he was taken to a secure room in the emergency department, she said.

"He was still very agitated and they restrained him," she said. "They put these Velcro things around him and locked them." Alex spent the next 28 days in the locked room while his parents worked with social workers at the hospital and representatives from One Sky Community Services in Portsmouth, which helps get people with developmental disabilities the help they need.

They tried to get Alex into Hampstead Hospital, a private psychiatric hospital, but he was put on a waiting list, Sanok said.

In the meantime, she and her husband visited Alex in his "windowless room" in the hospital "three to five to seven times a day."

"Just to check on him, to monitor him and make sure he's okay," Sanok said.

Sanok and her husband worried that they would not be able to find a residential treatment facility for their son and wondered what would happen to him if they couldn't.

"We thought the hospital can't house him forever," she said.

Finally after 28 days in the emergency room, Alex was transferred to the Judge Rotenberg Educational Center in Canton, Mass.

"It was just night and day," she said about the care he's receiving at the facility.

"Massachusetts has so many more services. You can't believe all the stuff they have, they have computers, movies, he seems to be adjusting really well," Sanok said.

She's encouraged by how well Alex is doing now but remains angry that he had to endure 28 days in an emergency room waiting for the care he needs.

"I don't think this really should have happened. It's always the funding issue," she said. "The lack of funding for developmental disability services is just almost criminal."

U.S. Sen. Maggie Hassan, D-N.H., who began her career in public service advocating for people like her son who suffers from severe disabilities, said this week that "my heart goes out to this family and their son, as well as to the medical staff at the Exeter Hospital emergency room who cared for him there."

"Every individual who experiences disabilities and their family members face unique challenges, and we must keep working to build and train networks of professional caregivers who can help all Granite Staters who experience disabilities live safely and participate in their communities," Hassan said.

Chris Muns, the chief executive officer of One Sky Community Services Inc., said experiences like the one Alex Sanok went through "happens more than any of us would like to see."

He recalled one person with developmental disabilities who waited in an emergency room for services for almost two months.

"It's the lack of funding, the increased intensity of the care that the individuals we support need, particularly as they get older," Muns said.

There is a desperate need for increased funding from the state to provide the services to people with developmental disabilities that the "state is obligated by law" to do, Muns said.

But it's particularly difficult when it comes to finding services for people who display high intensity behaviors, he said.

"We've got some individuals who require at all times to have three people around them, not because they're at that level of escalation all the time, but if they ever get to a point where they do escalate, you literally need three people to deal with it," he said.

The biggest issue Muns sees right now is the lack of funding that has created a waiting list for care for the developmentally disabled.

Local school districts are required by law to provide services to someone with disabilities until the day they turn 21, then it goes back to the state, Muns said.

He estimates under the current state budget there will be 300 people statewide who may not get services they need.

In a letter he sent to state lawmakers recently, Muns said "the budget is about $18 million short."

One Sky will "do our best to provide" people on the waiting list "with some services," Muns said, but often it's not enough.

He pointed to Alex Sanok, and said, "because of competing needs and budgetary constraints, we were not able to provide him and his family all of the supports and services they needed."

"We're dependent on the legislature for our funding" he added.