HARTFORD, CT – The state of Connecticut says it reached an agreement with the Connecticut Hospital Association to allow some caregivers to accompany their loved one with an intellectual and developmental disability to the hospital.

But advocates who have been working for four weeks on the issue said it still allows hospitals to use their discretion and it doesn’t cover everyone with a disability.

“Currently some of our hospitals do have a compassionate visitor policy — and for that we are grateful — but the policies are discretionary, subject to change, and anything but uniform,” Shannon Jacovino, director of advocacy and public policy for The ARC Connecticut, said.

Jacovino said they have been advocating for Connecticut to adopt guidelines similar to New York and New Jersey.

Disability Rights Connecticut called it “an inadequate half-step in the right direction.”

“The Department of Developmental Services (not the Commissioner of Public Health) issued a letter asking Connecticut hospitals to allow people with intellectual disabilities to bring one support person with them to the hospital if they need help with matters related to their disability,” the group said in a statement.

It went on, the “‘guidance’ guarantees no real protection because neither DDS nor CHA has authority over hospitals in Connecticut. The DPH is the agency with licensing and enforcement authority. But, again, DPH and its Commissioner, Renee Coleman-Mitchell, remain silent.”

Tom Fiorentino, a parent and president of The ARC Connecticut, said more than a thousand families reached out to the governor’s office to express their fears that a loved one would be forced to face the greatest crisis in their lives alone.

“I think these folks want to do the right thing,” Fiorentino said referring to the Gov. Ned Lamont’s administration. “They just need to go a little bit further to get to the right thing.”

According to a letter from DDS Commissioner Jordan Scheff to families, the CHA “will strongly recommend and work with hospitals to allow one support person to accompany an individual served by DDS to a hospital admission or emergency department visit, when the physical presence to assist the individual through the hospital or ED visit is necessary.”

The patient caregiver would have to fill out a form and agree to wear a mask for the duration of the visit. The state will be expected to provide masks for this specific purpose.

Scheff’s letter continued, “For individuals that may not need a physical presence with them at a visit, the hospitals have made virtual communication options available for the family and loved ones of all hospital patients. This option should be utilized when the physical presence of a support person is not necessary for the care of an individual. We ask that families think through when a support person is truly a necessity and how virtual communication options may be a suitable alternative.”

To qualify to have a patient support person, an individual has to be receiving services from DDS. This leaves out a large portion of the disabled community.

There are 50,000 individuals in Connecticut with intellectual and developmental disabilities, but only 17,000 would be covered by this guidance.

Four 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.

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