Since the turn of the millennium, more than 90 percent of Americans have had access to 911 services, but Michael Carey, an advocate for people with developmental disabilities, says that more than 1 million New Yorkers living in OPWDD facilities are left out.

On Tuesday, the parents of a 34-year-old man who died at a Franklin County facility for the developmentally disabled met with legislators in Albany to call for the passage of a “911 bill” in the state Senate.

The 911 bill would make employees of the Office for People With Developmental Disabilities, like Sunmount in Tupper Lake, mandatory reporters, required by law to call 911 and the county district attorney when they see or hear of medical emergencies or allegations of abuse of residents.

Employees who do not report emergencies or abuse would be guilty of a class E felony and civilly liable for the damages caused by the failure to report.

Disability Rights New York, which sits on the OPWDD mortality review process identified telephone triage as the number one cause of untimely deaths for residents. When a resident is having a medical emergency, employees are required to call a nurse triage hotline out of Syracuse instead of 911.

This system, Carey says, led to the death of Christopher Blair, a resident in the Valley Ridge Center for Intensive Care in Chenango County.

An untimely death

“He was a very loving and kind individual,” Blair’s stepfather Stephen Merkley said through tears at the press conference. “He was tall and very strong, and he looked very overpowering, but he was just as gentle as a lamb. He taught us all so much. You know, he taught us tolerance because he was picked on. He’s just missed so much.”

On April 8, Christopher called his mother Judith to tell her that he was having trouble breathing and going to the bathroom. Judith called Valley Ridge and told two employees that he needed medical attention.

Christopher did not get a 911 call or go to a hospital. The next morning, he was found dead in his bed.

Carey said the proposed bill would have required the employees Judith called to make a call to 911 emergency services, just as if he were in a hospital or other state run facility. He says it is a civil rights bill, providing equal access to medical and police services to all New York citizens.

“Anybody with a heart should know that they deserve, just like anybody else, a 911 call,” Judith said at the press conference. “What is it going to take for them to do that? This could have happened to anyone. You want to have trust in these places [OPWDD facilities].”

On Tuesday, the Merkley’s and Cary met with state Sen. Betty Little, R-Queensbury, and state Assemblyman Dan Stec, R-Queensbury, to ask for their support in moving the bill out of committee and onto the Senate and Assembly floor.

Carey’s bill, which has a majority support in the Senate, 45 of 63 senators, and almost 100 of the 150 state Assemblypeople is now being discussed in the Senate finance committee, chaired by state Sen. Catharine Young, R-Olean.

It had similar support in last year’s legislative session but never came to a vote, getting stuck in the finance committee.

“There is no fiscal cost. We believe this was an attempt to stall the bill and run out the clock; they did it last year,” Carey said.

Carey said that Little, who they saw leaving the finance committee, and Stec were “shocked and appalled” to hear the Merklys’ story and said they would help if they could.

Impeded Investigation

Carey said that Christopher was the victim of a crime: criminally negligent homicide and endangering the welfare of an incompetent person, both felonies. But he said the employees who did not take action to save Christopher’s life have not been charged.

“There should have been criminal charges long ago,” Carey said.

There has been one state police arrest, unrelated to the two staff who ignored Judith and Christopher’s requests: a staff member who falsified a record saying they had done a bed check on Christopher that night when they had not.

“We have asked for the DA in Chenango County, Joeseph McBride, to ensure an independent criminal investigation,” Carey said. “As of right now they are playing shenanigans, they are not communicating. The Justice Center is investigating and we believe the Justice Center is going to make this disappear.”

Carey says the family will have an uphill battle in investigating Christopher’s death, because it is a conflict of interest for a state agency to investigate itself. The family has not been allowed to give supporting depositions.

“It’s a one-sided investigation if they don’t go to the family and get facts and information from the family,” Carey said.

The 911 calls, he said, are recorded at 911 call centers and could be used as evidence in future cases.

According to a report from the office of state Inspector General Ellen N. Biben, Valley Ridge, a 60-bed facility, had 148 substantiated cases of abuse or neglect between 2007 and 2011, with investigators believing more were never reported.

The Merklys said they did not know Valley Ridge’s reputation when Christopher was moved there from a closed facility. The Center for Intensive Care is a special branch of OPWDD, which often deals with people with developmental disabilities who have been charged with crimes but were deemed not fit to stand trial. Valley Ridge is one of two CITs in the state, the other being Sunmount.

This makes for a more violent atmosphere from residents and more aggressive response from employees.

Christopher, who had autism, was not one of the accused residents and did not have a history of violence.

“The state closed down those other developmental centers and they had to find a bed for him. Instead of putting him in a relatively safer place, they put him in a known, extremely dangerous place,” Carey said. “McBride knows that facility is rampant with abuse, I’ve sent him the documents.

“Most of these crimes are being kept from local police, the [district attorneys] and the coroners by the Justice Center, and McBride has been notified of this over and over again.”

Carey said he had to report Christopher’s death to McBride and the county coroner before they knew about it.

“I knew that they were going to cover it up, so I tried to get in communication as quick as I could,” Carey said.

The Merklys still have no official death report from the coroner.

Opposition to the bill

Sunmount already has had its own medical triage team on site for 10 years, a system not every OPWDD facility has at its fingertips.

“There’s very, very strict protocol for medical emergencies like that,” retired Sunmount employee Dave McMahon said.

Every facility, he said, has a medical person of the day, one of whom is there 24/7.

McMahon wonders where the line of “medical emergency” is drawn, and worries that liberal use of the bill will result in mismanagement of resources.

“The general staff there are not medical personnel … for a direct care staff to have to determine whether its a medical emergency or not just isn’t right,” McMahon said. “If somebody’s got a bloody nose, is that a medical emergency where you’ve got to tie up your rescue squads and 911 operators?”

He said most medical emergencies while he worked at Sunmount were seizure-related, and are handled by keeping the client on their side to avoid choking, and bringing in a doctor to take their vitals while the seizure passes.

McMahon also said the felony charge is too harsh, and an overstepping of the state’s boundaries.

Carey says a violation needs a harsh penalty to ensure people do not just brush it off.

Some former workers of Sunmount are skeptical if the bill will even work though.

“My gut says, ‘I don’t know that the reporting is going to be any better,'” Bob Sweet, a retired Sunmount manager, said. “My experience is that people will stick together and collaborate stories. So much collaboration that you rarely, if ever, got true stories or honest reporting.”

Though he did not work for OPWDD, Sweet said he saw retaliation and the cost of whistle-blowing at Sunmount.

“If a new employee shows up on the floor and they raise a flag, call out an issue, identify a problem, then they’re blacklisted and sometimes set up so that they are then falsely accused of something. You know, you get rid of the problem.”

While OPWDD can not comment on pending legislation, the office’s Director of Communication, Jennifer O’Sullivan wrote in an email, “OPWDD staff and providers are instructed to call 911 in cases where an emergency response is needed, and to contact law enforcement in cases of suspected criminal activity.”

She also included a guest commentary published in the Albany-based Daily Gazette, written by members of the Eastern NY Developmental Disability Advocates, Patrick Curran and Brad Pivar.

“First, the bill is grossly over broad in requiring all reportable incidents, as defined in law, to be reported to 911 and law enforcement officials,” Curran and Pivar wrote in the article. “We as parents know that the vast majority of these incidents are relatively minor, routine, accidental or simply false. To make every one of them the subject of an emergency response call and a criminal investigation would be a gross overreaction.

“Second, this bill discourages people from working in the field of caring for the disabled.”

They pointed out that people are already leaving the field because of challenging work, low wages and the constant concern of suspension, investigation or dismissal – not wanting to add possible felony charges on the list of concerns.

The state Senate and Assembly’s legislative sessions end on June 20.