Alex Scott cannot speak.
If he could, he might be able to answer a crucial question that has pitted the people who speak for him against one another and left him stranded in a Northern Virginia hospital for three weeks.
At issue: Does the 45-year-old with cerebral palsy need a feeding tube?
Scott’s relatives say the group home where he has lived for two decades told them it would not take him back without a feeding tube. His family says the medical procedure is unnecessary and would benefit group-home employees more than Scott.
The struggle over the feeding tube, advocacy groups say, illustrates what can happen to people with disabilities when caregivers disagree about what is best for them.
The family has filed a complaint with the U.S. Justice Department and contacted the Office of Human Rights within Virginia’s Department of Behavioral Health and Developmental Services.
In the meantime, Scott remains at Inova Loudoun Hospital, with his sister, Samantha Tunador, cataloguing each day on social media with the hashtag #takeAlexhome.
“Day 11,” Tunador wrote April 10 on Facebook. “I promise you Alex, we are doing everything we can to get you out of the hospital and back to your home.”
“End of Day 12, and no confirmation that Alex is going home. This just sucks.”
“Day 20,” she says in a video that has been viewed 1,800 times. “We really are not much further.”
As of Friday, Scott had spent 23 days in the hospital. He arrived at the end of March with a slight fever and possible bronchitis and was supposed to be discharged a few days later, his family said.
Margaret Graham, director of Loudoun County’s Department of Mental Health, Substance Abuse and Developmental Services, which oversees the group home, said her agency has been in contact with Scott’s family but, because of privacy concerns, she could not discuss the matter publicly.
“We can tell you that as in any situation, [the agency’s] group home providers are committed to promoting health and wellbeing through the provision of individualized supports,” Graham wrote in a statement. When a person is hospitalized, the staff works together to come up with a discharge plan, and, in that planning, “must ensure that an individual’s required support and medical assessment can be safely met in a group home setting. ”
Tunador said the family fears that if Scott is unable to return to the group home, the hospital will find a nursing home for him that will offer less social stimulation and may be farther from his relatives in Loudoun.
“People keep saying to me, ‘Why do you want him to go back to this group home, where the problem is?’ ” Tunador said. “That’s his home. That’s what he knows. It’s where his friend are. It’s where he’s happy. And the unknown is scarier.”
While Scott cannot speak, Tunador said he has been clear about what he wants: to leave the hospital. A video of Scott shows him in bed, shaking his head and screaming. Tunador posted it on Facebook and wrote alongside it that he wanted the nurses to remove his IVs so he could go home: “He has lived in a Loudoun County group home for 20+ years. He has not changed and his level of care is the same. They have changed and it is not fair!”
Tunador said she was worried that by sharing her brother’s story, and videos of him, she would face criticism for exposing him. But the response, she said, has been overwhelmingly positive, with thousands of people rallying behind Scott and sharing their own stories of aging parents and loved ones with disabilities.
“Underneath all of this is the same principle of how do we make decisions for and on behalf of people,” said Tina Campanella, the executive director of the District-based nonprofit Quality Trust for Individuals With Disabilities.
In Scott’s case, she said, a feeding tube can help if he is at risk of aspiration — drawing food into his airway or lungs — but, at the same time, he would no longer be able to taste food.
“If eating is clearly a pleasurable experience for him,” Campanella said, that should be taken into account in the decision-making process. “Conversely, if he didn’t care, and he was in distress during the eating process, that might be a piece of evidence that a feeding tube could add quality to his life.”
Tunador said her brother eats in a way that might be jarring to someone observing him the first time. He holds his head back and makes a gurgling sound. It can take him 30 minutes to finish a meal. But he has eaten that way his entire life, she said, and he loves food, especially anything soft and chocolate flavored.
His teacher from high school, Susan Walker, recently visited him after learning about his situation through Facebook. He looked the same, she said. He weighs less than 100 pounds, but he was always thin.
“Other than the gray hair he’s starting to get, it’s the same old Alex,” Walker said. “I think it’s heartbreaking that they won’t take him back.”
Scott’s father, Robert Scott, said his son was one of the early residents of the group home and that in his two decades there he has formed “wonderful relationships.” But in the past few years, the family says they have begun to notice changes in his care, including questionable hospitalizations and “made-up problems like malnutrition and worsening of swallowing.” When the family started collecting medical records, they also found reports they hadn’t seen, including one that read, “Family in denial.”
“Our family position is that we have always welcomed any surgical procedure that solves a serious problem like eating or bloating or fecal waste management,” Robert Scott wrote in a letter outlining his son’s situation, which he sent to county officials. “But the experts have ultimately advised against surgery. It is our opinion that Alex has changed little in his lifetime. So much is difficult today just as it was when he was a child. But he is a happy and mostly healthy guy.”
Curt Decker, executive director of the National Disability Rights Network, said Scott’s civil rights are at stake.
“What might seem like, ‘We’ll just give him a feeding tube, what’s the big deal?,’ ” opens the way to more interventions, Decker said. “What’s next that they will come up with?”
All too often, caregivers are willing to prioritize the ease of a person’s care over that person’s quality of life, Decker said. He pointed to the “Ashley Treatment,” a term named for a girl born in 1997 in Seattle who, at her parents’ bidding, received hormones to limit her growth, underwent a hysterectomy and had her breast buds removed.
Robert Scott shared parts of his son’s medical records with The Washington Post. In a report from last April, a doctor wrote that Alex Scott was accompanied by his caregivers, mother and sister for an evaluation for the possible feeding tube placement.
“His caregivers are most concerned about the episodes of abdominal distention and possible decrease in by mouth intake,” the report reads. “His mother and sister believe that the abdominal distention is no different than his baseline, report he is not losing weight and believes his by mouth intake is at baseline.”
The doctor found that he was “well-developed, well nourished, in no acute distress.”
She wrote, “I cannot strongly recommend a feeding tube at this time, and though everyone clearly has Mr. Scott’s best interests in mind there is disagreement between his mother and caregivers.”
On Day 23, Tunador posted an emotional video saying that the family had been hopeful in recent days, but that ended when her brother’s doctors met with county employees Friday. They maintained their stance. He still wasn’t going home.
“I just cannot believe that they would do this to him,” she said, crying as her brother watched from his wheelchair behind her. The county is asking her family to choose a high-risk surgery over Scott — and they can’t, she said. “We’re not going to. We’re going to stand up for him.”
“I can’t even believe this is his home right now,” she said, looking back at her brother. “Sorry, buddy.”