Disability advocates and civil-rights groups are lobbying Governor Doug Ducey to order hospitals to allow visitors when they’re necessary for patient support.
In a letter sent to the governor's office on Friday, five Arizona groups including the Arizona Association of Providers for People with Disabilities, the Arizona Public Health Association, and Arc of Arizona, ask Ducey to issue a new executive order that allows "support people" and outlining procedures to ensure safe access.
The groups hope to change restrictions on visitors at hospitals or care homes that were implemented as the pandemic began, with most visits disallowed to avoid infection. While the anti-virus rules help the spread of COVID-19, stories have emerged of disabled people left without the care they need from family members.
"Arizona’s most vulnerable residents need – and deserve – the same access to high quality medical treatment available to the general population," the letter reads. "The only way to assure this is to provide appropriate protections, including the presence of essential support persons within healthcare settings, as required by law."
Arc of Arizona Executive Director Jon Meyers told New Times that he had heard complaints both from people who were stymied in trying to visit family members in need of support, as well as from people in the healthcare field who said they were bending over backwards to accommodate access.
"So, there is a disconnect between the two sides on this," he said. However, he said, allowing support people to access patients is a legal and moral imperative, adding that such visits can be done safely.
Meyers said that while the right to a support person is secured under the Americans with Disabilities and Affordable Care acts, an executive order enforced by the state Department of Health Services would offer a more immediate message to hospitals and quicker recourse for families than a federal complaint.
Without such an order, Meyer predicted not just increased deaths, but more adverse long-term care outcomes for people with disabilities.
"We think it's morally the right thing to do," as well as a legal right, he said.
The issue is personal for Danny Adelman, who signed the letter as executive director of the Arizona Center for Law in the Public Interest. He has a family member with cognitive impairments who was recently admitted to a hospital after complications from what was meant to be an outpatient procedure.
"She just woke up in the hospital and just had to fend for herself," he said.
Adelman pointed to other states' executive orders as proving safe access was possible. The Center for Public Representation has listed 14 states that have issued guidance on hospital visitation for people with disabilities.
"This something that can be done right now, because this is going on right now," Adelman said.
The letter asks for a response from the governor by June 25.
Families Hope for Change
Last week, Phoenix New Times reported on the case of Lloyd Shull, a 52-year-old Apache Junction man hospitalized after a stroke whose family was unable to send someone to support him in the hospital. In desperation, Shull's extended family and their friends held small demonstrations outside of Banner Desert Medical Center, waving signs like "Visitation discrimination is a crime."
Shull has since been moved to a rehabilitation facility, and Banner Health, Arizona's largest hospital chain, has said their policy has been updated to allow a support person. But the issue is far from over.
Shull's family still has not been able to see him since he moved to the rehab facility on June 16.
Douglas Brackett, an Ahwatukee 78-year-old, is also hospitalized at Banner Desert Medical Center.
Cardiac arrest that led to brain damage around four-and-half years ago means Brackett, who used to own a telephone system sales business, can't move or talk. Instead, he communicates using his tongue or eyes, said Carrie Chappell, his daughter.
Chappell and Brackett's wife, Barbara, play an important role in helping him communicate and stay calm, they said. They're able to to interpret his facial expressions and what words he's mouthing, tell when he's in pain and work with him to determine what the issue is. Sometimes when he's distressed at home he'll mouth his wife's name to a home-care nurse and she'll arrive to calm him down.
Brackett's family said that the hospital has tried to take him for a CT scan multiple times but had been prevented from doing so by his oxygen levels dropping, something they attribute to his anxiety.
Normally when he's hospitalized they spend eight-hour days next his bed helping take care of him. This time they've only seen him three times during his three-week stay, and only under the end-of-life visitation policy to assess whether to terminate his life support.
"I feel half the time like I'm having a heart attack because I'm so concerned," Barbara Brackett said.
Chappell said when they came in to see her father recently, his eyes were nearly matted shut with gunk, and he was unshaven. They had to ask for blankets and socks, as his feet were ice cold. When they said they didn't want to end his life support after assessing his condition, they were told they had 20 minutes before they had to leave.
"They will let you come in and watch him die, but you can't come in to be a support system," Barbara Brackett said.
She said they're willing to wear all the PPE necessary, like they already have for the end-of-life visits, and complete any prerequisites for safety. But the bottom line, she said, is that her husband has the right to a support person — a right that is being violated.
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Banner spokesperson Nancy Neff said in an email that the company's policy does allow a support person to accompany a person with a disability. While a technical issue had delayed the update to their website appearing, as of Friday it had been updated. She said she could not comment on specific cases, but staff had visitation guidelines they were following on a case-by-case basis.
However, Chappell said that trying to assert her father's right to visitation last week had only gotten them defensive responses from medical professionals.
Read the letter to Governor Ducey below: