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“The smell at 6:30 a.m. would knock you over. There were 40 people to a room. The beds were these plastic things. Every day we'd herd people into what was called ‘the pit.’ It was a dusty old playground with two broken swings. We'd lock the gate and sit up on a cement parapet watching them.”
Michael Moloney, CEO of Horace Mann Educational Associates, was describing a ward in the Walter E. Fernald Developmental Center in Waltham (originally the Experimental School for Teaching and Training Idiotic Children), where he worked in the 1970s.
His words awakened my worst nightmares. I was imagining what it would be like for my 27-year-old autistic son — who currently lives in a Boston group home — 50 years ago, before Medicaid began subsidizing community homes. Intellectually disabled and challenged on so many fronts, doctors would have likely urged me to send him away, where he might be subjected to all kinds of abuse.
In his powerful book “The State Boys Rebellion,” Michael D’Antonio wrote about the atrocities that took place at the Fernald, where one guard “would have the boys line up, pull down their pants, and stand still while he went down the line yanking each one’s testicles. The pain was almost equaled by the shame.”
Instead, my son lives in Boston with amiable housemates. And he is supported by caring staff who — due to already bone-thin state budgets — barely make a living wage. Nevertheless, they work hard to make a happy life for him, with a weekly bowling league, music therapy, dinners out and all sorts of community activities. My son’s story is a typical example of the success of Medicaid-funded residential services and programs.
But he and thousands like him in Massachusetts alone stand to lose it all with the repeal of the Affordable Care Act. Without its support, even forward-thinking states like Massachusetts might not have the funds to replace its community-based programs, and it is unclear what type of program the state would implement to house its most vulnerable citizens.
We might think that the desperate conditions of the institutions like the Fernald, Dever and Willowbrook are part of a hellish but distant past. But if House Speaker Paul Ryan's American Health Care Act is passed as originally proposed, we may see adults with developmental or intellectual disabilities reduced to drastically insufficient care again, with state agencies no longer able to maintain the staff or the homes themselves.
Gary Blumenthal, CEO and president of the Association of Developmental Disabilities Providers, wrote to me that, "the GOP health care plan would decimate the safety net for people with disabilities who would be forced along with elders, poor families and children to fight for crumbs left after essential programs would be cut to the bone."
Gov. Charlie Baker estimated the Republican bill would cost the state at least $1 billion in reduced federal aid in 2020, another $1.3 billion in 2021 and $1.5 billion by 2022.
And, according to Moloney, 50 percent of organization’s residential services come from Medicaid. “I'd never thought we'd ever go back to institutions,” he said, “but when I see these executive orders, I realize how quickly things can change."
Still, a move back to large institutions like Dever or Fernald would actually cost the state far more than our current system of supported community living. The National Council on Disability found that in 2009 in Massachusetts, the average cost per individual per year in a state-run institution was $246,375 whereas the current policy of residence and community-based supports was $56,241.
But the cuts would mean that the state would have to rethink how it serves people like my son, very likely opting for many fewer supports, less staff and thereby severely limiting what he could do safely out in the world. The higher ratio of individuals to staff would inevitably mean lower quality oversight. More people would be at risk — and that is a scary statement.
As it stands now, a 2013 national survey by the Disability and Abuse Project found that “More than 70 percent of people with disabilities who took the survey reported they had been victims of abuse.” Of those respondents, 82.7 percent reported verbal-emotional abuse, 50.6 percent physical abuse, 41.6 percent sexual abuse, 37.3 percent neglect and 31.5 percent financial abuse.
And this is with our current system. Imagine where a funding cut of this magnitude would leave us.
My son’s story is a typical example of the success of Medicaid-funded residential services and programs.
A humane, civilized society should not need these data points to understand why people with disabilities must be supported in the community. All we need to do is ask anyone who was in an institution or who worked there what living in the community means.
Larry Tummino, deputy commissioner at the Massachusetts Department of Developmental Services, wrote in a short memoir called "We Bear Witness" about his time working as a "house parent" in a newly-formed group home in Taunton years ago. The 12 developmentally disabled men had come to live there from Dever.
On that first day, a number of us were watching the Bruins game in the den. Right in the middle of the game guys would leave the room, go upstairs to their rooms for five or so minutes and return. I knew they weren’t going to the bathroom because there was one in the hall near where we sat. My curiosity got the best of me. I went upstairs and watched. Each guy would come up, take his key out of his pocket, unlock the door to his room and go in for a while, then emerge a little bit later.
I finally got it. The fact that they had their own keys to their own place where it was quiet and private was incredibly new. Before this, the keys to anything hung on those giant key rings that only the attendants had. Now they had the keys. I realized the keys were for more than their rooms. The keys were to having their own lives, their own destinies.
We must not allow our collective memory of past atrocities become obscured by politics of the worst sort. We already have the key to a great America: Medicaid and health care for all. Lives not only saved, but lived productively. People brought out of the shadows to turn their faces to the light. Let’s not lose them again in the darkness of ignorance and greed.