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In a pandemic, bring the paperwork

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Kevin Schroeder and Betty Alexander

Kevin Schroeder and his mom, Betty Alexander, enjoy riding their bikes around Dayton. Schroeder has autism, and Alexander has been legally in charge of making medical decisions for her son. A recent trip to an emergency room became a traumatic experience when Alexander didn’t have the paperwork needed to prove that.

As information about COVID-19 evolves, so has Providence St. Mary Medical Center’s responses to the pandemic, officials there said.

Before Walla Walla County’s progression into Phase 2 of Washington state’s economic reopening plan was announced Wednesday morning, St. Mary had already made changes to its virus-specific regulations regarding patient visitors.

On Friday, hospital spokeswoman Kathleen Obenland said that among the new exceptions made is that patients with cognitive disorders or developmental delays who require assistance in safety, communication or personal care can have one visitor stay with them at the hospital.

That can be a family member, personal assistant or someone with legal power to make health care choices for the patient, according to St. Mary.

Welcome change

The news came as a relief for Kevin and Heather Linn, who early last week experienced the challenges of the hospital’s initial coronavirus policy put in place to mitigate exposure and transmission risk of the virus.

St. Mary’s first such policy said only people with legal health care power could accompany a patient needing assistance with decision making in the emergency room, Obenland said.

The Linns, who live in Dayton, both have a level of cognitive disability, Kevin Linn said, adding he’s been the one to help his wife when she goes to medical and emergency care visits.

Because Heather Linn has hearing loss from a childhood illness, her husband’s presence at appointments has allowed him to listen to and explain doctors’ instructions to her.

“She told me no one has ever explained it to her as good as I do,” Kevin Linn said.

But on the trip to St. Mary’s emergency department for her knee pain, Kevin Linn said he wasn’t allowed to accompany her for support.

“Not unless I had power of attorney,” he recalled.

“I’m her husband. People who are married don’t have that.”

Obenland said St. Mary deployed staff from its chaplain department to work in the emergency room as liaisons between patients and their family members who were not allowed to join them.

“Their role is to advocate on behalf of the family. They also can assist with paperwork to designate a power of attorney if needed,” Obenland said in an email.

Betty Alexander said she saw none of that kind of help when she showed up at St. Mary’s emergency room in April with her son, Kevin Schroeder.

Schroeder, 46, was diagnosed with autism at age 3. Caring for her son is an around-the-clock job, Alexander said.

While Schroeder has lived in a group home in Walla Walla for years, his family decided to move him home to Dayton during the pandemic.

Last month, Schroeder’s knee developed a painful boil, Alexander said, and she tried to problem solve with virtual doctor visits.

But when his leg showed signs of serious infection despite antibiotic treatment, the two came to St. Mary — which Alexander had hoped to stay out of during the pandemic, she said.

“Initially they let me go to the exam room with Kevin. About 10 minutes later, they told me I needed to leave,” Alexander recalled.

“I told them, ‘He cannot be alone. This is a mistake. I am his legal guardian.’”

But Alexander had not thought about bringing along proof of guardianship, she said.

“I’ve since told people to always have that.”

That’s the same message Cyndy Knight is now spreading.

Be prepared

Knight is executive director of Walla Walla Valley Disability Network, an organization founded to assist families of children with disabilities access services.

While parents here have usually experienced no barriers to accompanying their disabled children of all ages during hospital care, COVID-19 has changed that for adults with intellectual disabilities, Knight said.

Most such adults have a family member or another liaison come with them for medical care. The question now becomes what do parents and others need to be aware of when doing so, she said.

Here, and in many communities, families are used to being taken at their word that they have a right and a need to stay with their non-typical-needs family member.

Yet most parents haven’t taken the extra steps to get that set in legal stone, Knight said.

“One of the best things our families can have is a documented diagnosis on file. The same for power-of-attorney and guardianship papers,” she said, noting Walla Walla Valley Disability Network is encouraging people to gather information about medical decision-making before a crisis.

A helpful place to start is with CaringInfo, a free, online and state-specific program of the National Hospice and Palliative Care Organization that provides resources to help people create advance directives for end-of-life care and services, Knight said.

People can also implement “supported decision making,” an alternative to full guardianship that lets a person with a disability use a team of people to help them navigate health care and make other decisions.

Parents of adults with cognitive impairment, however, are running at full speed under everyday circumstances and often don’t have time to consider pursuing any of those ideas, Knight said.

“We are all wondering what happens if our kids go to the hospital. Whatever protocol they have for children needs to be extended to our adults. They might be 42 years old, but they are still a child.”

On Tuesday, Knight spoke with St. Mary’s chief medical officer, Dr. Christopher Hall, to discuss how a hospital visit might look for the families Knight’s nonprofit represents.

Hall and others echoed what Knight has been telling parents — arrive at the hospital with all the legal paperwork in hand.

Knight said she also learned the bigger concern for St. Mary is the cognitively disabled adult who shows up for emergency care without support and no one then steps forward in that role.

Lessons learned

This week’s meeting is a start of a collaborative relationship between St. Mary and the disability organization that will better serve a population often silenced by society, Knight said.

“I’m excited about this expanded relationship.”

Betty Alexander said going forward, she will always be prepared to support her son with proper documents in hand.

That April incident was traumatic for both of them, she said.

Alexander, a 1968 Dayton High School graduate, spent her career as a computer specialist for the U.S. Department of Veterans Affairs.

The work has given her a deep comfort level with medical providers, she said, but on this night it was for naught.

“I was crying. I was upset. I tried to talk to the doctor, and he didn’t have time for me. He said, ‘We have policies, and we have protocol.’ No one came, and they wouldn’t listen to me.”

Because Schroeder can communicate in a way that hides the full extent of his disability, the staff thought he would be fine without her, Alexander surmised.

“They thought it was all me, being a mom. But he can’t be left alone, and he was left in an exam room with all that equipment in there.

“It was horrible.”

Staff did come and tell Alexander to go be with Schroeder even before her guardianship papers could be delivered, telling her she needed to go back to her son’s room immediately.

“I said, ‘I told you,’” Alexander said.

Schroeder was able to come home after four nights at St. Mary, during which time both mother and son were treated with kindness, she added.

Alexander hopes others can learn her lesson and be ready for a medical emergency during this pandemic and afterward.

“I don’t want this to happen to somebody else. When it comes to health, you really have to be an advocate.”

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Sheila Hagar can be reached at sheilahagar@wwub.com or 509-526-8322.

Sheila Hagar has written for the Walla Walla Union-Bulletin since 1998. Sheila covers health, social services and city government in Milton-Freewater, Athena and Weston in the Walla Walla Valley.