Assisted Living For Developmentally Disabled Adults - People with intellectual and developmental disabilities live longer. What housing solutions are there for this already vulnerable population?
It was the morning of August 16, 2017. Anna Smith (name changed to protect privacy) was at a meeting at the Interim Facility (ICF) where her brother Matthew Smith (name changed to protect privacy), then 55, had been living for about a month. ICFs must provide comprehensive health care for people with intellectual or developmental disabilities or IDD. Matthew had a condition called Dandy-Walker syndrome, a rare birth defect in the brain.
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That day, the staff at ICF told Anna that Matthew was healthy and eating well. Five days later he was sent to the emergency room due to severe dehydration and constipation. He was there for 38 days.
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Before that, Matthew spent more than two-thirds of his life in another ICF—one of the largest ICF homes in Connecticut known for its abusive conditions. However, Matthew was never abused or mistreated, according to his sister.
In fact, Anna believes it was one of the only facilities that could properly care for her brother.
"His medical health and all his abilities declined over the years. He was hand-fed and couldn't even hold a spoon because he was so contracted. His health concerns were my biggest fear - that he wouldn't be able to be treated [at another facility]," says Anna .
However, with the larger ICF facility losing financial support, she knew the next best option would be to move to a smaller ICF.
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Jamie Lemon is also nervous about leaving her son in the hands of others. Lemon is the mother of two autistic teenagers - 16-year-old Wyatt and 17-year-old Caleb. After spending a year on the waiting list, Caleb was placed in a group home in Gilbert, Ariz., due to his physical aggression.
"He tends to be aggressive towards women. I'm five feet tall and he's almost six feet now," says Lemon. In January 2019, when her husband was sick in the hospital, Caleb got worse.
"Caleb started attacking me for hours - biting me from head to toe. I still have no feeling in my back. It was really bad," says his mother.
"We just see so much evidence of what inclusive and inclusive living can be that we're always going to encourage people to explore it."
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"It would be my biggest fear to get rid because I won't be able to be an advocate for my son when I'm gone. His stepfather almost died twice from non-alcoholic liver failure. His brother is higher functioning, but I don't know," says Lemon.
Additionally, her extended family lives out of state and does not have the resources to help Caleb. In the end, Lemon knows that the state of Arizona will have to take care of Caleb after she dies.
While Lemon and Smith have found housing that works for their loved ones, both worry about the potential for abuse or neglect without their constant supervision.
Histories of abuse at larger institutions, such as Willowbrook Public School in Staten Island, New York,—which in the mid-1900s was known for its neglect, uncontrolled hepatitis outbreaks and an understaffed, overcrowded facility—led many to support a smaller community. -Established houses.
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John Myers, executive director of The Arc of Arizona, a disability advocacy group, believes in moving people with IDD out of institutions and into community settings.
"Since the founding of the organization in the early 1950s, there has been a strong emphasis on getting people out of institutions — which can help people integrate more into their communities, be more included in the life of their communities," says Myers. "We just see so much evidence of what inclusive and inclusive living can be that we're always going to encourage people to explore it."
However, it also recognizes that nursing facilities such as ICFs and other community-based solutions are not completely removed from abusive practices and institutional form, which means they retain some of the characteristics of institutions.
"The real reason the people at the hacienda were prosecuted was that what happened was so horrific and received so much media attention that there really was no choice."
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Perhaps one of the most egregious examples of abuse occurred in 2019 when an incapacitated woman nursed at Arizona's ICF, Hacienda Healthcare — later gave birth to a baby.
"Unsurprisingly, what happened at the Hacienda started a lot more work and generated a lot more public attention than we (IDD community) ever got," Myers explains. "However, many skilled nursing facilities and nursing homes have characteristics of a community environment. They are designed by nature to provide a consistent and controlled environment."
Sarah O'Neill learned first hand the abuse that can happen behind closed doors in some group homes. On September 2, 2021, her 16-year-old autistic and epileptic son, Austin, was found with severe burns and bruises on his body. O'Neill and the doctors at Phoenix Children's Hospital suspect it was caused by caregivers dragging him from his room to the shower.
According to O'Neill, the problem with many group homes is that even if abuse occurs, and the staff is held accountable or even charged with a crime, the home itself is unlikely to be closed.
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"What we haven't done yet in Arizona is properly fund the systems that need to care for people with IDD on a daily basis."
One of the reasons for this, according to Myers, is because of deinstitutionalization - the process of moving individuals from large institutions to community-based alternatives.
Since then, there is a huge need for housing in the IDD population. As such, state governments are reluctant to close these facilities. In order to take any action, Myers believes that there must be great communication following the event.
"The real reason the people at the Hacienda were prosecuted was that what happened there was so horrific and received so much media attention that there really was no alternative to the state of Arizona," Myers says. "The incident was so much beyond what anyone could bear."
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Regardless of what happened, Hacienda's ICF remains open. Even at that time there were some families who pleaded with the state to continue operating the Sinda because they had so few options.
Finally, finding the appropriate housing solution is not easy, especially if the person is aging, has a significant disability and needs additional medical care.
President Joe Biden pledged $150 billion in the Build Back Better agenda — passed by the House of Representatives on Nov. 19 — to help alleviate this health care crisis; The plan includes investing in community-based alternatives, increasing wages for 2.4 million home care workers and eliminating the waiting list of 820,000 people for national care.
The money could not have come at a better time. Group homes are struggling to keep up with demand, and with many caregivers earning only minimum wage, there is a turnover rate of about 51%.
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"What we haven't done yet in Arizona is adequately fund the systems that are supposed to care for people with IDD on a daily basis. The provider staff is being turned over at such a high rate," Myers says. "It's almost this revolving door. It seems like we're taking two steps forward and one step back, or sometimes we're taking one step forward and two steps back."
Despite the fact that over time community-based alternatives can save states more money than large institutions, group homes are not adequately supported financially.
"There are about 45,000 people in the developmental disability system in Arizona alone. And it's growing every year and is expected to rise steadily," explains Kelly O'Toole, president and CEO of The Opportunity Tree, which primarily supports seniors with IDD in their residential program. "But here's the problem: the system Ours, with all the people we support, is sub-financed at $150 million."
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This economic problem is exacerbated because people with disabilities live longer and need more resources as they age. "People with Down syndrome live longer. So what do we see? We see dementia. And there's not a lot of support for that," says O'Toole.
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Fortunately, advocates are creating alternative options for people with IDD. After struggling with her son's group home, O'Neill decided to create her own, a process she estimated would take more than eight months.
To deal with the high turnover of nannies, she intends to pay above the minimum wage and create a community center with one to two bedroom apartments around it. In doing so, she hopes to build a sense of community that is missing in most group homes.
“I do it as a non-profit and bring in other professionals to use everyone's expertise. I can hire a quality team, and I can control the team that has [Bella] - ensuring the quality in my hands and not the state's," explains O'Neill. "My career will be on top. But at first it will be
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