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The Globe tells half the story about Fernald
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.
Funding for DDS clients falling through the cracks
There are few burdens greater than having to care for a loved one with a severe intellectual disability, particularly when the state declines to provide any help.
At a public hearing earlier this week, members of the Legislature’s Children, Families, and Persons with Disabilities Committee heard stories from a number of people whose loved ones have fallen through the cracks in the system.
The Committee is considering a number of bills intended to help people who find themselves just outside of the Department of Developmental Services’ strict eligibility standards, or for whom, there just hasn’t been any funding for community-based residential, day, work, and other programs due to years of budget cuts. There’s some hope that a recent uptick in state revenues will translate into some additional funding of these programs.
Linda Boucher testified that her son attended special education programs from the time he was 3 until he reached the age of 22. At that age, special education services end, and people needing services must apply to DDS, which uses a “rigid” standard to determine eligibility. If a person’s IQ measures above 70, eligibility is denied even if the person has significant problems in adaptive functioning, including very low conceptual, practical, and social skills.
Boucher’s son scored 75 on an IQ test and was denied DDS services. He had been in a day program, she said, but has been home ever since. Boucher has a full time sales job that often requires her to be away from home for as much as 10 hours at a time, and sometimes requires her to be away from home overnight. It’s as if her son is under house arrest, she said.
“Where do I go? I need help,” Boucher said, her voice cracking with emotion. Ironically, Boucher worked in the Department of Mental Health during the Dukakis administration and helped develop many of the community-based programs for persons with intellectual disabilities that are now being cut. She said no one from DMH or DDS will now return her phone calls.
One bill before the Committee (H. 3527 ) would require the DDS to use a less restrictive standard in determining whether a person has an intellectual disability and is therefore eligible for DDS services. The bill would bring the state in line with the American Association on Intellectual and Developmental Disabilities, in establishing eligibility for DDS services for IQ scores of “approximately” 70 or below. This would prevent the rigid cutoff now used by DDS in excluding people from services.
One woman testified that she is concerned she will be forced to quit her job to care for her son, who is now 21 and needs one-on-one supervision. He is not intellectually disabled, his mother said, but nevertheless lacks most social skills. He currently attends a special education facility and is able to hold down a job. But because he is not able to control his behavior, he must be supervised at all times.
Another bill before the Children and Families Committee (H. 983) would provide an additional $23.4 million in funding for DDS community-based programs for persons with special needs who are either turning 22 or have graduated from high school.
However, this bill would also direct that funds from the sale of developmental center properties be earmarked for community-based programs for persons turning 22. We would support that language if the proponents of the bill would, in turn, support the continued operation of the developmental centers for those who choose to live in them. Unfortunately, there’s not much chance of that happening.
It’s not only persons with disabilities who slip through the cracks in the DDS system. There are also the direct-care workers who tend to be underpaid and under-trained, particularly in privately run group homes that operate under contracts with DDS. One bill (S. 45) would establish a state task force to study the average compensation, level of training and turnover of these workers.
Lisa Gurgone, Executive Director, of the Mass. Council for Home Care Aide Services, noted that direct-care workers tend to struggle to make ends meet, and termed those workers “a piece of the puzzle left out of health care reform in Massachusetts.” She and other speakers maintained that with the numbers of elderly and disabled people projected to grow rapidly in coming years, the state needs to develop a new workforce strategy to meet the demand. The task force is a first step in that direction, they said.
One other bill, which COFAR supports, would provide easy public access to a wide range of information about direct-care worker turnover and compensation as well as compensation of top executives of DDS contractors. The bill (H. 975) would require all of that information to be published on the DDS website. (The Arc of Massachusetts, which is heavily funded by DDS contractors, predictably opposes this bill.)
Finally, COFAR strongly supports H. 2683, a bill filed by Rep. Angelo Scaccia, which would establish an independent office of quality assurance that would monitor the care of intellectually disabled persons throughout the DDS residential care system. COFAR has raised a number of questions in recent weeks about the current DDS licensure and certification system for community-based group homes. (The Arc, of course, opposes this bill as well.)
Trying to make sense of DDS’s budget numbers
It’s hard to figure out what to make of the administration’s spending decisions when it comes to providing services to people with intellectual disabilities in Massachusetts.
On the one hand, since Fiscal Year 2009, the administration and Legislature have cut most community-based line items, including adult family supports (26.9% cut), community transportation (17.6%), community day and work (3.8%), Turning 22 (35%).
Not suprisingly, the developmental centers line item in the budget has been cut since FY 09 by $45.4 million, or 24.2%. (In fact, based on a set of numbers provided by the Department of Developmental Services, the budgets of the Templeton, Monson, and Glavin developmental centers alone were cut by almost 70 percent between FY 09 and FY 11.)
Yet, at the same time, the community residential line item (which funds contract-based care in privately operated group homes) has been raised since FY 09 by $182.2 million, or 32%. In addition, the state-operated group home line item has been boosted by $27.4 million, or 19.9 percent, in that time.
These two community residential and state-operated group home line items have been boosted by a total of $209.6 million, while the cuts have totaled $87.4 million during the same period (not counting the planned phase-out of funding under the Boulet lawsuit). The bottom line is the grand total of all DDS line items is $34.6 million higher in the current fiscal year than it was in FY 09.
What exactly has been going on here? We’ve asked DDS for information on where residents of the developmental centers targeted for closure have been transferred. We don’t believe very many residents have opted to live in privately operated group homes. So it remains a mystery to us just why the administration has needed to boost the community-residential line item by more than $180 million.
It’s true there are potentially thousands of people waiting for community-based residential care. But if indeed more than $180 million in new state dollars have been put toward accomodating people waiting for residential services, why has the administration been cutting funds for transportation, day programs, family support, Turning 22 and other programs for those same people?
It would seem that had the administration pared back the increase in the community residential line item to a modest $100 million increase since FY 2009, they could have prevented the cuts in the other community line items at at least held them harmless. It’s strange because the administration’s funding decisions have left it open to the charge from the Association of Developmental Disabilities Providers that the administration has failed to back its “professed interest in Community First,” an initiative intended to boost community-based services choices and spending.
In the meantime, DDS has denied a request by COFAR for records detailing community-based costs of a particular community-based residential program. We’ve been seeking to compare costs and services under this particular contract with the budgets of the Templeton, Monson, and Glavin Centers from FY 2009 to the present. (We don’t believe that the cuts in the developmental center budgets will save money in the long run because these same services must be funded in community-based accounts if they aren’t funded under the developmental center budgets.)
We asked for both a breakdown of the Templeton, Monson, and Glavin budgets and records detailing the costs of medical, nursing, clinical, and therapeutic services provided to residents of the group home program. In a letter dated October 23, DDS’s general counsel stated that the documents we requested concerning the group home program are part of DDS clients’ records and are therefore exempt from disclosure.
COFAR has appealed the denial to the state Division of Public Records, arguing that we are not seeking information that identifies any specific individuals. What we want to find out is which agency or agencies both fund and provide the medical, nursing, clinical, and therapeutic services under this contract, and how much these services cost state taxpayers in total.
We believe DDS can provide the information we are seeking without violating the privacy rights of the individuals in this program. Should DDS refuse to provide this information, the public will have no way of knowing basic details about the provision and cost of these kinds of public services.
COFAR blog 