RI Advocates & RIDD Council Seek Governor’s E.O. to ensure patient rights of disabled

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Editor’s Note: There are two articles here – the first from Advocates for adults with developmental disabilities – the second from the RI Developmental Disabilities Council

By Gina Macris, Developmental Disability News – contributing writer

The need of some people with disabilities to have a trusted person at their side to help them communicate with strangers has run up against the visitors’ ban imposed by hospitals to curb the spread of the coronavirus.

These patients have been traumatized and their medical care jeopardized in a violation of their civil rights, say Rhode Island disability rights advocates.

During the first coronavirus surge in the spring, at the urging of Disability Rights Rhode Island and other advocates, the Rhode Island Department of Health adopted a policy that exempts family members and others who act as caregivers from hospitals’ ban on visitors when patients need assistance to receive the appropriate care and to communicate with hospital staff.

But DRRI now says that the policy is not widely understood, and patients who have disabilities like dementia and autism run a high risk of being traumatized in the hospital, exhibiting new problems that make it more difficult for medical personnel to treat them.

DRRI, the Sherlock Center on Disabilities at Rhode Island College, and the Rhode Island Developmental Disabilities Council are seeking an executive order from Governor Gina Raimondo to get quick enforcement of the policy, especially during hospital admission, when it is urgently needed.

In a letter dated December 2, the executive directors of the three organizations cited 7 specific instances during the last two months in which care was compromised and patients were disoriented and severely upset.

The examples, drawn from “dozens” of complaints, including two concerning patients with severe communications problems who were administered anti-psychotic medication when they became uncooperative.

One was an elderly nursing home resident with dementia and depression who is also deaf and legally blind. She was admitted for a broken hip. Another was a young man with autism who is non-verbal. In addition to being drugged, he was restrained physically. Now he is showing signs of dementia, hospital officials have told his mother, who they continue to bar from the hospital.

The health department policy says that “when a support person is essential to the care of a patient with a disability, including patients who have altered mental status, communication barriers, or behavioral concerns (such as patients with intellectual and/or developmental disabilities, dementia, and/or behavioral health needs), accommodations for the patient should be made so that the patient can be accompanied by the support person.”

The policy goes on to describe the role of the support person in facilitating communication, equal access to treatment and informed consent “in accordance with the civil rights of patients with disabilities.” And it gives wide latitude to the definition of support person, including family members, guardians, and paid and non-paid caregivers and advocates.

The letter to Raimondo emphasizes that “this is not an issue of ‘hospital visitation’ policy, as it has sometimes erroneously been termed, although the language is unfortunately (albeit understandably) contained within ‘visitation’ policy provisions.”

“We understand the reasons for curtailing typical visitation in hospitals during the pandemic, and we fully support such restrictions when they are not essential to an individual’s access to care.”

The letter was signed by the executive directors of the three organizations, Morna Murray of DRRI; Amy Grattan of the Sherlock Center; and Kevin Nerney of the Developmental[ Disabilities Council.

The authors said the Department of Health was to follow up on the policy with a plan for ensuring hospital compliance, but no plan has materialized in the last seven months.

Meanwhile, the three agencies have continued to receive complaints from “dozens of individuals and families.” They have helped the patients and families follow up with the hospitals and officials of the health department, the executive directors said. Some have put off needed medical care for family members with disabilities because of the ban on hospital visitation, they said.

“The bottom line is that violations continue to occur and there does not appear to be any single authority that can be cited quickly and conclusively so that the intended policy can be implemented on the spot, when it is needed most urgently,” the letter said.

Having exhausted other channels over the last seven months, Murray, Grattan and Nerney said, they are seeking a virtual meeting with Raimondo to discuss the need for an executive order “to resolve this alarming situation as quickly and conclusively as possible.”

Editor’s Note: Simultaneously, RINewsToday received this release from the RI Developmental Disabilities Council:

Today, Disability Rights Rhode Island (DRRI), the independent, federally mandated Protection and Advocacy (P&A) System for the state of Rhode Island, asked Governor Gina Raimondo to issue an Executive Order directing enforcement of the Rhode Island Department of Health policy permitting people with disabilities to have the accompaniment of essential support persons while in the hospital. The request comes after months of unsuccessful negotiations with state personnel to enforce the policy, and amidst numerous complaints from individuals and families who have been denied appropriate access to care. DRRI is joined in this request by the Paul V. Sherlock Center on Disabilities at Rhode Island College, Rhode Island’s University Center for Excellence on Developmental Disabilities (UCEDD), and the Rhode Island Developmental Disabilities Council.

“Many individuals with disabilities require essential support persons to assist in facilitating access, including communication with healthcare providers and providing informed consent for medical decisions,” said Morna Murray, Executive Director of DRRI. “We are deeply concerned people are being denied the essential support they need, effectively denying them access to critical health care. This can literally be the difference between life and death.”

“Our families need this policy to be enforced immediately and consistently,” said Amy Grattan, Executive Director of the Paul V. Sherlock Center on Disabilities. “We have received dozens of calls from families who report their loved ones have been traumatized because the policy has not been enforced, and as a result are now afraid to seek necessary care for fear of further distress and harm.”

“It is imperative that all people have the ability to access medical treatment that is appropriate, proper, and with the person’s informed consent,” said Kevin Nerney, Executive Director for the Rhode Island Developmental Disabilities Council. “Denying an individual the ability to

understand or communicate their needs is clear discrimination and a denial of civil rights.”

The three federal partners have asked for a meeting with Governor Raimondo to resolve this issue as quickly as possible. In addition to ensuring that people with disabilities have access to health care, they seek to address the chilling effect the non-enforcement of the Department of Health policy is having upon families who are reluctant to subject their family members to additional trauma while hospitalized