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Siblings in the Time of the Coronavirus

Millions of American families struggle to support our most vulnerable members.

My sister Margaret lives four and a half hours away from me by car. Even when the world was normal, it could be tough to see her as my visits disrupted her carefully calibrated routine. I had to plan around her activities, which were few but precious. I couldn’t stay too long and I always knew when it was time to go; Margaret’s signature farewell is to holler a cheerful goodbye while slamming the door in your face. To be completely honest, there were times when 300 miles seemed like a long way to go for a two-hour visit, bombastic goodbye notwithstanding.

These days, I can’t see Margaret at all. Her group home is not allowing any visitors in or allowing residents out to see even their nuclear families because the health risks are too great. Margaret is, thankfully, pretty healthy, but one of her roommates has considerable underlying medical conditions. The idea of any of them ending up in the hospital right now is just unthinkable.

Millions of American families like mine face the same circumstances and worse, as I heard from members of the Sibling Leadership Network, a nonprofit group that offers peer support, policy, and advocacy for siblings of people with disabilities. These siblings are always thinking about their brothers and sisters, and the coronavirus pandemic has raised the stakes in so many ways.

Many siblings, like Margaret, are unable to receive visitors or leave their residences. Some are on complete lockdown in nursing homes and even confined to their rooms.

Other brothers and sisters brought their medically fragile siblings home to live with them before the country locked down. The situation is manageable for some and unsustainable for others. Nobody knows when it might be safe for these siblings to return to their homes.

Some typically developed siblings have contracted coronavirus themselves and their brothers and sisters don’t understand why they can’t see them.

Other SLN members have brothers and sisters sick with coronavirus and are helpless to visit, bring them home, or even advocate for their housemates, many of whom aren’t being tested.

SLN member and Illinois resident Nora Fox Handler is worried about her brother Marty, who has high functioning autism and anxiety. Marty lives independently in Section Eight housing, and his case manager had been helping him with his shopping but is no longer allowed to do so. Nora said all she can do is remind him over the phone to wash his hands and hope he is navigating as safely as he can. Marty, she notes, is luckier than some in her state.

“We have way too many state-operated institutions that house people with disabilities. They are all on lockdown just like nursing homes and have many cases and people are dying without the support of their families,” she said.

Nora lost three other siblings in the last three years, two of whom were on the autism spectrum.

“As much as I miss my sibs that I have lost, I am glad they are not living through this,” she said.

Emma Shouse, Public Information Specialist for the Tennessee Council on Developmental Disabilities, also struggles to help her brother from a distance. Evan, who has autism, lives about half an hour away from her. He has difficulty communicating and is nonverbal, which is of particular concern during the current health crisis. Emma worries that he won’t be able to communicate if he is feeling sick and staff at his apartment might not notice.

“In a lot of ways, my frustration with his services and quality of life began before all this,” she said. “We have struggled to get his provider agency to offer him meaningful choices.”

With Evan’s activities even more limited now, his outbursts of frustration and anxiety have escalated. Recently he banged his head through a sheetrock wall in his apartment in the midst of one of these behavior episodes, which can occur when Evan feels overwhelmed or upset. Emma and her family worry about the heightened risks of potential for injury and hospitalization for Evan at this time.

“That has led me to decide I am going to start to go see him and help him not feel so isolated,” Emma said.

She noted that coronavirus has brought civil rights issues to the fore for people with disabilities. When the pandemic began, disability organizations around the country became concerned about the possibility of medical rationing and unequal care.

There’s also the question of the need for accompaniment if a person with a disability has to be hospitalized. At this moment, most hospitals do not allow family members to attend or visit patients, and yet it is inconceivable for any of us to think about our siblings being without an advocate at the hospital.

SLN has joined dozens of other organizations, including TASH, The Arc of the United States, The American Association of People with Disabilities, and the Autistic Self Advocacy Network in speaking for equal access to medical care for Americans with disabilities during the coronavirus pandemic.

In the midst of all of this, siblings are resilient and find bright moments. Recently, Emma was surprised by a first-ever FaceTime call from Evan, who doesn’t like to call or text.

“Until now, there had really been no functional option for communicating with Evan unless you are in the room with him,” she said.

He figured out how to call his sister from his iPad, and she read to him from James and The Giant Peach—his choice.

“That was really lovely,” she said.

Emma said her more immediate concern is inspiring the agency caring for her brother to offer him more meaningful activities.

“My next biggest hurdle is getting down on paper what a good week can look like for Evan as long as lockdown and social distancing go on,” she said.

I’m thinking along the same lines and looking to the near future. For Margaret, certain milestones in the year have passed or been canceled. Her birthday, Easter, and Washington State Special Olympics are high points that she won’t get to enjoy this year. She doesn’t understand why; she’s frustrated and our attempts to explain don’t satisfy her.

For all of us, our freedom of movement has disappeared overnight. It feels impossible that I could once just hop in the car and show up at my sister’s house. I’d do it now in a heartbeat. I’d welcome that long-distance drive and the door slam in exchange for whatever slice of an afternoon Margaret could spare.

I’m trying to be optimistic that we can regroup and see each other this summer. I’m hoping Margaret and I can go for a bike ride and out in the boat. Her favorite holiday, the Fourth of July, hovers far enough in the future that I remain hopeful we can gather. Maybe Independence Day 2020 will allow us to celebrate our freedom from these strange new circumstances that have kept us apart and, at the same time, reminded us how tightly we are bound together.

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