Disability Rights Connecticut and several other advocacy groups aren’t going to sit by as families send their loved ones to the hospital alone.
The group filed a complaint with the U.S. Office of Civil Rights Monday urging the federal federal agency to “immediately investigate and take swift action,” to resolve allegations of disability discrimination.
Last week the Department of Developmental Services and the Connecticut Hospital Association reached an agreement to allow some caregivers to accompany their loved one with an intellectual and developmental disability to the hospital. But it was limited to only those who receive services from the Department of Developmental Services.
The guidance “unlawfully limits protections to only those individuals with I/DD who are served by DSS,” Disability Rights Connecticut said in their complaint. “The letter excludes people with disabilities in Connecticut not served by DDS, as well as those who do not have I/DD but have equally critical needs for, and the legal right to, a support person to accompany them to the hospital.”
It doesn’t include people like Maria Dadario, a 27 year old woman, who is hard of hearing and has limited vision.
Dadario was seeking medical care for a mental health symptom and the New Haven hospital Emergency Department refused to provide her with a sign language interpreter. Instead, they forced her to use Video Relay Interpreting, which did not work because the technology kept freezing and Dadario was upset and signing too fast.
A psychiatrist tried using VRI, but it was not working well and Dadario felt there were many miscommunications. She left after three hours.
Five weeks ago, guidance from DDS made it possible for the 5,000 disabled adults in group homes and other congregate settings to have a care person accompany them to the hospital.
But Penny Barsch knows that it’s not always possible for group homes to staff someone at the hospital.
Barsch’s son, Shane Sessa, lives in a group home and had to be taken to the hospital a few weeks ago. His care person was unable to stay with him the whole time and she was prohibited from going to the hospital as that patient care person.
Barsch said Shane has cerebral palsy and is in a wheelchair. He has no behavioral issues, but they restrained his hands for five or six days during his visit and he got hysterical when they were taking him into surgery.
“The nurses helped him FaceTime me, but oftentimes we were disconnected,” Barsch said.
She said she would have stayed with him the entire time and would not have been disruptive.
“To leave him there afraid was one of the hardest things I’ve had to do,” Barsch said.
Sessa is also mentioned in the Disability Rights Connecticut complaint.
The third is a 73-year-old woman going by the initials G.S.
The woman had an aneurysm 11 years ago and is mostly non-verbal.
“Over the years, family members have developed sophisticated individualize means of communicating with G.S. including modeling words simplifying and chunking information, making direct eye contact and recognizing when G.S. is experiencing fever, fatigue, pain and discomfort through various non-verbal cues,” the complaint states.
G.S.’s daughter was allowed to visit, but only was allowed to leave the room to eat once. She was told by hospital staff she had to stay in the room with her mother and could not eat or drink because it would put her mother at risk.
DRCT requested three times that a family member be permitted access and were refused the accommodation. The woman was intubated and moved to the ICU.
“The hospital refused to grant the accommodation stating that the ICU is a different level of care and due to COVID-19, visits by family to say goodbye cannot be allowed,” the complaint states.
With the exception of three Connecticut hospitals operated by Nuvance Health, which also operates hospitals in New York, not a single Connecticut hospital makes an exception to its visitation prohibition for support persons for individuals with disabilities, according to DRCT.
DRCT was joined in the federal filing by the Center for Public Representation and CommunicationFIRST, both based in Washington, D.C., and The Arc of Connecticut, The Arc of the United States, and Independence Northwest:Center for Independent Living of Northwest CT.
“Persons with disabilities must have equal access to medical resources and services,” director Roger Severino, director of the Office for Civil Rights at HHS, said. “OCR will continue to enforce the law as appropriate to ensure that no person is left behind because of unlawful stereotypes or discrimination.”