Around a dozen disabled people, with some leaving and others joining, have been living in the lobby of the New York State Nurses Association after the union and activists clashed over a proposed amendment to the Nurse Practice Act.
Members of ADAPT, which stands for American Disabled for Attendant Programs Today, met with the state Nurses Association representatives on Wednesday, March 19, to discuss fully implementing the Community First Choice. The provision would create a new category of workers called “advanced home health aides” to provide assistance with tasks only nurses are allowed to perform, such as giving medication and assistance with ventilator or feeding tubes. ADAPT members argue this would allow many disabled people to move out of nursing homes and into their own homes.
Community First Choice (CFC) is a federal program aiming to increase the ability of the disabled to avoid an institutional setting, such as a nursing home, and live at home in their community.
The group has occupied the building since Wednesday night after the union would not agree to the amendment, according to Bruce Darling, an ADAPT organizer from Rochester. As of Monday, March 24, morning, when The Spotlight went to press, the encampment was continuing.
If the union supported the amendment, Darling said it would also be approved in the state Legislature. Without the support, he believes it’s unlikely to pass.
“These people are the ones who are blocking it,” Darling said.
Darling on Friday, March 21, said protesters hadn’t seen anyone from the nurses union over the last couple of days in the building.
NYSNA Political Director Leon Bell said the group supports implementing the CFC program and has advocated for disabled people to receive care in their homes.
“All people, including CFC beneficiaries, are entitled to access high quality healthcare and to any and all supportive services necessary to allow them to exercise this choice,” Bell said in a statement.
NYSNA though “opposes any efforts to further dilute the provisions of the Nurse Practice Act by allowing non-nurses and unlicensed personnel to engage in the practice of nursing,” according to Bell.
He said the association believes the intent behind CFC could be accomplished without the changes ADAPT is proposing to the Nurse Practice Act.
“The integrity of the practice and quality of nursing can be maintained and the CFC can be implemented with minor changes to existing state regulations to allow nurses to delegate ‘health related tasks’ in the home care setting,” Bell said in a statement.
Jensen Caraballo, who has muscular dystrophy, was hospitalized the morning of Saturday, March 22, after he became he ill, according to Darling. He had been at the encampment since it started. He was still in the hospital as of Monday morning.
“He said, ‘I need to go to the hospital now,’ so we took him,” Darling said. “He is doing better and we are not sure what the plan is. … He will probably go back to Rochester.”
Caraballo, on Friday, said he used to live in a nursing home, and he does not want to return. He said not having the choice to live at home is a civil rights issue.
“Every day I do this advocacy work because I am afraid one day I might end up in a nursing home,” Caraballo said. “We put ourselves in this position, and some of us will get sores on our bottoms, but we do it because that’s how important it is.”
Darling said the Nurses Association sent them some language it believed would address the situation, but then another lawyer believed it would create a conflict with state law.
“We are between two sets of policy wonks,” he said. “One set says it works, and the other says it doesn’t.”
Bell said the Nurses Association does not object to creating advanced home health aide titles, with higher levels of education and training, to provide support services.
The National Organization of Nurses with Disabilities (NOND) sent ADAPT a letter in support of its effort to fully implement the Community First Choice.
“Currently, people with disabilities in New York who are not in programs where they hire and manage their own attendants must use nurses for health-related tasks,” NOND said in its letter. “Although people in New York may be unfamiliar with this approach, other states have successfully implemented nurse delegation. Studies have demonstrated this is a cost- effective and appropriate way to provide assistance.”