(Cross-posted from the COFAR blog)
A front-page article that ran Thanksgiving Day in The Boston Globe depicts with great sensitivity the lives of four men who were moved out of what was then the Fernald School 40 years ago and have lived ever since in the community.
The problem is that the piece, by Globe columnist Yvonne Abraham, implies that the Fernald Developmental Center of today remains the same over-crowded, poorly run institution that it certainly was for these men when they lived there from the 1950s through the 1970s. At the very least, the story neglects to mention the dramatic improvements that were made in the conditions at Fernald and elsewhere after the federal court assumed oversight in the 1970s of care delivered in Massachusetts to persons with intellectual disabilities.
And the story mistakenly implies that only community-based care is appropriate for the residents of Fernald and other state developmental centers today.
From the all-caps headline (“CELEBRATING THE GIFT OF BEING FREE”) onward, the article paints Fernald unrelentingly as a dark and isolated prison. While that was true up through the 1970s, the untold story is that Fernald and the five other remaining developmental centers in Massachusetts today are state-of-the-art facilities that are highly integrated with their surrounding communities and serve a population that needs their high level of services.
Abraham, however, doesn’t seem to want to discuss that part of the story. At first, it wasn’t entirely clear to me why she portrayed Fernald in such a uniformly negative light throughout the story. Not only is there no mention in the story of the improvements at Fernald since the 1970s, but there’s not even any mention of the fact that Fernald and three other developmental centers in Massachusetts have been targeted for closure by the Patrick administration. Or that guardians of 14 remaining Fernald residents oppose the closure and have kept the facility open for almost a year and a half beyond its scheduled closing date after having filed administrative appeals of the transfers of their wards from the center.
Why not mention all of those things that have been going on at Fernald currently and in recent years and place the story of the facility in a modern day context? It would have been a more interesting story, I think, had Abraham noted the contrast between the four men who are thankful today that they were able to leave Fernald, and the 14 guardians who today believe Fernald is the best place available for their loved ones.
It was only as I was nearing the end of Abraham’s piece that I came across a paragaph that made clear to me what appears to be her agenda. She stated:
The world has caught up with (the four men who left Fernald and a former worker who arranged for their move in 1971 to a group home outside of Fernald.) The goal now is to keep people with disabilities in the community, to help them realize their potential and enrich their surroundings.
Yes, it was now clear that this article was yet another in a long line of journalistic paeans to “community-based” care for people with intellectual disabilities. State-operated institutional care — bad. Community-based care — good. That’s the over-simplified storyline onto which too many journalists seem to feel the need to grasp, while ignoring the subtleties of recent history and even federal law.
Community-based care is the goal for many, but not for everybody. The U.S. Supreme Court, in Olmstead v. L.C., recognized that for some people with the most severe and profound levels of intellectual disability, institutions such as Fernald may well provide the most appropriate care.
Moreover, the community system today does not live up to the utopian ideal that Abraham’s piece sets for it. I’m sure that three of the former Fernald residents in Abraham’s story do live now in a “sweet bungalow” in Hyde Park, and that they do have a “good life,” in which they go to day programs where there is tai chi, singalongs and crafts. I have no doubt that Abraham was struck in spending time with these men by “how much of their potential was squandered” at Fernald 40 or more years ago and by “the joy of the lives they’ve salvaged” in the community.
But while there are many success stories in the community system, that largely privatized system is beset today with widely acknowledged problems of high turnover and poor training of direct-care staff, and abuse and neglect. At the same time, state contracts worth hundreds of millions of dollars held by vendors to run community-based group homes are poorly overseen by the state, resulting in the potential for widespread waste, fraud, and abuse in their business practices. The media in this state have not been covering those issues, but the media in New York State have been. (See this and this.)
We think it is a tragedy that the Patrick administration apparently views care for the intellectually disabled in this same simplistic light of institution-bad and community-good, and is shutting the four developmental centers in budget-cutting moves. We are waiting for the day when the media take a more nuanced view of this issue, and at least recognize that there is another side to the story.
We strongly urge Abraham and other journalists to visit the Fernald, Glavin, Monson, and Templeton Centers, all of which are steadily being emptied of their staff and residents, before it’s too late. They will see for themselves the wonderful level of care that takes place in those centers, and will note that there are no young, high-functioning residents like Albert, Curtis, Richard, and Joe, left in them today.
Ms. Abraham is a great journalist so it is disappointing that she wrote such a one sided article. Why not acknowledge that the Fernald she wrote about closed four decades – 40 years – ago. And it is still the home to fourteen people who are loved by fourteen different familes, numerous staff people and neighbors. They are exercising their rights to stay in their homes; to stay in THEIR community. Doesn’t that mean anything to anyone? Governor Patrick is evicting people disabled by mental retardedation from their homes? How sad. How infensible. How outrageous.
When one defends Fernald, you are defending both its history and its current status. Fernald is no longer the snakepit it once was because of heroic efforts of parents and advocates who went to court to stop the abuse and neglect. The conditions of the present Fernald may not resemble it’s past, but these men’s stories helps prove the point that sending disabled loved ones away to an institution is a practice that was abysmal and no longer has a place in our society.
No one is defending Fernald’s history prior to the 1970s. Many of the family members who make up COFAR today were in the forefront of the litigation that brought about the improvements in care at Fernald and other facilities. Today, the developmental centers, as the post states, are state-of-the art facilities that are strongly supported by their current residents and guardians.
If you forget history and don’t learn from it, you are bound to repeat it, which is what is happening here.
I wish someone would explain what the difference is in the current practice of forcing everyone, regardless of their abilities, to live in the community from the standard DDS’ practices of 40 or 50 years ago of forcing everyone, regardless of their abilities, into institutions. Same crap, different date!
The practices of 40 or 50 years ago had these 4 gentlemen living at Fernald in one brand of hell. Thankfully, they were fortunate, back then, to have someone who cared enough to recognize their ability and did something about it.
As demonstrated in the article, these 4 wonderful gentlemen have the ability to tell their story in their own words. I guarantee you that no current Fernald resident has the ability to tell any story. I too challenge Ms. Abraham to go to Fernald and ask a resident to tell their story. I guarantee her column will be blank.
In contract, take 4 gentlemen who live in cottages (not institutional buildings of the past) and have happy lives at today’s Fernald and force them into a community residence with no abilities to cope with that environment. To them, isn’t that just a more current brand of hell? Does it make it ok because its in a house in some town?
So much for years of Federal lawsuits, advocacy, laws and regulations to ensure these folks are treated with dignity as individuals with specific needs and abilities.
As usual the article doesn’t hesitate to remind us of the more than grim past. Yet it forgets to remind us that those abysmal conditions existed at the hand of the DDS when they had free rein over the lives of these individuals before a federal court demanded improvement. Since the DDS has been taken to court time and again for violation of various laws and regulations (currently not just 40 years ago) it hard to believe that anyone could just go along with the latest and greatest philosophy without question. Talk about forgetting history.
The laws and regulations that resulted from the heroic efforts of parents, advocates, judges and legislators that were designed to protect the rights of these 4 gentlemen and others to venture out into the community were also designed to protect the rights of those to stay.
The “Fernald Experiment” continues as these individuals challenge the laws and regulations that were enacted to protect their rights. We were fortunate that we HAD legislators that were wise enough to enact those protections. To bad I can’t say that about the current group at the state house. It will be interesting to see if political influence, the courts and society in general have learned anything from the past.
Excellent points, Dave. While I’m not sure that Abraham has an agenda, i.e., “institution-bad, community-good,” I’m guessing that this was a feel good story intended to illustrate giving thanks on Thanksgiving. Like the four men interviewed for this story, my sister-in-law, a former resident of Belchertown State School, now lives in a community home and enjoys a life that is worlds removed from the institution of the 1960s. My wife and I give thanks for that. But you’re absolutely right … 1960s Belchertown and Fernald cannot be equated with 21st-century Fernald. The 14 guardians of current Fernald residents obviously wouldn’t be fighting to keep that facility open if their loved ones were not being well served there.