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!” (Click to Continue)
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‘Heartbreaking’: Medical standoff leaves man with cerebral palsy stranded at hospital for weeks