Group homes have had problems from the beginning. When the federal government mandated moving people out of institutions and into the community, they didn’t plan very well. Most states were not prepared. State departments scrambled to put something together to meet federal requirements and house people as quickly and efficiently as possible. For some states this was a crisis. Maybe that never changed. It still seems like the priority is getting people placed quickly and efficiently. What happens after that? Well, what happens after that is someone else’s problem?
Funding is always an issue. The Division of Developmental Disabilities is chronically underfunded. Limited funding prevents group homes from being monitored as closely as they should. Limited resources limit wages, limit the number of qualified employees, limit adequate training and limit oversight. This causes high risk work environments, high turnover and a constant state of crisis for employers, employees and residents.
The state is ultimately responsible for ensuring the safety and well-being of the people who live there, the safety of the employees and the resources available to employers. The state contracts with managed care organizations (MCOs - health insurance companies). The MCOs contract with provider agencies. Agencies sometimes contract with staffing agencies. If there are problems, they have to be reported. If they are reported, who is responsible for addressing the problem?
There are at least five organizations funded by taxpayers to take care of individuals with disabilities in group homes and keep them safe. The state legislature, AHCCCS, DDD, MCOs and group home operators. Yet, there were 23 reported deaths in seven months in a sample of group homes that housed individuals with complex health needs. The minimum standard of care is not dying and none of these organizations were able to make sure that at least 23 people in their care didn’t die.
There were over 2,000 complaints in seven months. Most of the complaints were alleging abuse and neglect. After that, the complaints were about safety. This is how people in state care who are unable to care for themselves are treated? More than 20 deaths and no questions, no outrage, no call for reform? If 23 kids died in eight months in public schools, there would probably be riots in the streets. If 23 kids died in eight months in DCS custody, it would be all over the news. But more than 20 people die in group homes and people just shrug their shoulders and go on with their day?
I wanted to mention how there was no outrage or concern or even an acknowledgment of the 23 people who died while they were in the state’s care in less than a year. What about the year before or the year before that? I can’t remember the last time I heard about or if I ever heard about people dying in group homes with one exception.
Recently, a child was named and his death in state care was acknowledged by some state legislators. Eighteen months after, he died. The tragic death of Jakob Blodgett was only acknowledged after it was discovered that the group home operator donated to the governor’s inaugural fund. Prior to that, he was another nameless faceless number on a report that most people will never know about.
If staff are underpaid and overworked, employers have limited resources, the Division of Developmental Disabilities is underfunded, the legislature has to meet budgetary requirements, AHCCCS must comply with federal mandates and if each organization has a reason why they are not accountable, who is looking out for people who can not look out for themselves?
It would be easy enough to blame inadequate funding, incompetent leadership or dysfunctional government for the unsafe living conditions, abuse and neglect and the deaths of at least 23 people in state care. I think the answer is not that simple. Assigning blame serves no purpose at this point. Maybe the problem is the way that people with disabilities are seen — as subhuman, not really people, not important, of no value. That is if anyone sees them at all.
There seems to be an “out of sight, out of mind” mentality. If people are not visible, then they don’t exist. If people don’t exist, then there are no problems. As a society, we take great care to make sure that our own comfort levels are prioritized over the safety and well being of others. People with disabilities - general medical, mental health, cognitive, developmental or intellectual (all things that may occur naturally with age, by the way) are kept far away, so they are not seen and people don’t have to be bothered by discomfort. Maybe. I am thinking about how often I see people with disabilities at any public event or public place, with friends or family. My city has a higher percentage of people with disabilities than most other cities in Arizona. It is above the state average. I would have never guessed this based on who or what I see. There are still sidewalks without curb ramps, streets without dome pads and more manual doors than automatic.
My point is that collectively, we can and should do better. There is a reason for everyone to care and plenty of reasons to choose from, including: being or knowing a person or people with disabilities, knowing that millions of tax dollars may be funding failing programs, knowing elected officials and appointed leaders may be falling short of their obligations, knowing that we all may be one accident or illness away from being unable to care for ourselves and knowing that for the most part, people don’t care.
It would take less than 5 minutes to let your state legislators know why they should care about this. You may have to do this more than once but even if you have to do it 10 times, it’s less than an hour of your time to contribute to the safety and well-being of thousands of people who need care.
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