Lately, the Arc has mounted a campaign to urge Gov. Patrick to appeal U.S. District Court Judge Joseph Tauro's ruling last month that Fernald should remain open. Joining the campaign this week has been state Representative Tom Sannicandro, D-Ashland, who is seeking signatures from his colleagues in the Legislature to a letter in which he contends that Fernald is too large and too expensive to continue to operate.
But what about the compromise plan for a smaller, more cost-effective facility? The Arc has been silent on it. Rep. Sannicandro makes no mention of it in his letter.
The Fernald compromise plan has been detailed on this site and in The Boston Herald and other papers in the past week.
Is it possible that it just might work? Is there something fundamentally wrong with it? The Arc and Rep. Sannicandro aren't saying, apparently.
JT of the Arc has written a post on this site in which he has laid out the usual statistics about how Fernald is too large and too expensive to continue to operate. It's a lengthy post, but JT makes no mention in it of the compromise proposal. You'd think he might have found some room to say something about it.
The argument being made by the Arc and Rep. Sannicandro is that because Fernald is so large and expensive, Judge Tauro's decision must be appealed and Fernald must be closed. Period. Everyone living there must be evicted. They must be moved out of the only home many of them have ever known, and, in many cases, away from the only caregivers they have ever known, and dispersed throughout the state. The families who want the Center to remain open are misguided about what's really good for them, and are seeking an unwarranted privilege at the expense of everyone else in the community.
Yet, when the families propose a plan for a smaller, cost-effective facility that would be fully integrated into the community, there is no response.
JT, Rep. Sannicandro, Governor Patrick, let me ask you:
Why can't a solution acceptable to all sides be found? Why can't we discuss this? Why the silence?
One of the reasons Fernald is “expensive to run” is that it’s poorly managed. For example, check out the Boston Herald’s website showing salary information for state employees – search under the Department of Mental Retardation and sort by actual earnings. Several nurses at Fernald are earning far more than the DMR commissioner, because they are working tons of overtime. Now, I’m not saying they don’t deserve the money they work for – but, with better management, there wouldn’t be a need for so much overtime. This doesn’t even mention the patient safety issues that arise when a caregiver works too many hours.
<
p>
Of course, running a facililty like this is inherently expensive, given the age of the infrastructure and the acuity of the patients. But it could be less expensive with better management.
http://www.bostonher…
<
p>
You can run various reports from here.
and management, overtime, and salaries are issues that should be addressed. In addition, there may be a number of people on the Fernald payroll who don't even work there (See the May COFAR Voice article on page 5, “Analysis shows Fernald cost claims may be inflated”). Fernald's salary cost per resident appears to be significantly higher than at another state facility, leading to questions as to who and what is being included in the Fernald budget.
…Pardon my ignorance, but I don’t follow MA state politics all that closely, even though we live there most of the year. I don’t follow US federal politics all that closely, either, except to laugh at them.
<
p>
The issue is as follows. What little I know of Patrick and MA state politics, I have gleaned from BMG. From what I can tell from BMG, Patrick hasn’t done very much to influence MA state government policy.
<
p>
Is that correct? Or am I missing something? What has he done to influence policy? Please be specific.
Oh, and there was the environmental directive that new buildings will be greener.
When are we going to look forward to a future where all individuals are supported in their communities. Why are the individuals living at the 6 institutions across the state so special? Once again lets remind people reading this, no one is admitted to these institutions any more. My son 's challenges are no less significant that the individuals living at Fernald and families today don't want segregation for their family member now or in the future. Parents are raising children, working hard for community acceptance and inclusion with extremely short resources. The average family support stipend across the state is between $500 and $1000. Turning 22 funds are horrific.
I read the Globe series a few months back and was saddened to read about the twins bus ride to nowhere. My son is out at the movies this afternoon with a couple of college students (yes, it takes two people sometimes) Despite his high support need he has places to go and people to see. Bowling, horseback riding and the sporting events to name a few.
The institutions must be consolidated and closed for the greater good. How about equity for all of the individuals living with significant disabilities? How about investing in our communities and sharing those great supports? People adjust all the time to changes, even people with significant disabilites. And just imagine what wonderful lives they could have.
Please check out: http://www.cofar.org/
There are a lot of assumptions and labels being used that really are not accurate.
Just for continuity — link to a prior thread:
<
p>
http://www.bluemassg…
<
p>
I personally am very much in favor of community residence vs institutional for people with mental retardation but given the advocacy of the families I think a compromise solution appeals more to me.
By way of disclosure, I'm an advocate for disability rights and have sought the closure of Fernald and like facilities for some time, spurred on by the actual stories of people with disabilities formerly segregated in institutions and their family members.
Things at Fernald are undoubtedly better than in a terrible past, when there was widespread physical and sexual abuse, plus novelties such as radiation experiments on residents. Parents and advocates were right some decades back to seek court intervention. But I ask, might we consider, within the current debate, when such facilities for people with disabilities, then labeled mentally defective or insane or some such denigrating term, appeared? It was a time when Jim Crow prevailed and elected women officials were a dream– and perhaps it was even before suffrage, and maybe before slavery was outlawed. My point is this: the model of mass institutional care is a sad anachronism.
Community care and services have served thousands upon thousands of people formerly in institutions nationwide. It can occur at Fernald, and by so doing, free resources for others in the community. Dave of the Fernald League, in earlier comments, said closing Fernald would provide more money for the providers, the implication always that this is why people support this. Well, most of the advocates for closure aren't providers, and it's really hard to see how any agency is going to get rich by serving a slice of the less than 200 people remaining at Fernald. The big cost of Fernald is infrastructure, not services, as I understand it. Invoking the weary statement that the reason people want to close Fernald is because it is good for providers reminds me of political leaders who invoke patriotism when there's little else to justify a failed foreign policy endeavor.
B now from Boston
Check out the URL I supplied above, Bill. Your simplistic string of insults is not helpful.
did Bill H. and Skn above read my post? It's about how the Fernald families have proposed a compromise plan for a smaller, scaled-back facility on a portion of the campus. This can be done just as, if not more, cost-effectively, I think, than closing Fernald and re-establishing the housing and services in multiple locations throughout the state.
Neither Bill H. or Skn responded to this proposal, which was exactly the point of my post. Why the silence about this proposal, Bill and Skn? What's your opinion of it? Why wouldn't it work? Why can't we work together for an acceptable solution, instead of tossing out loaded phrases about state-provided care, such as “segrated” and “Jim Crow?”
By the way, the big cost at Fernald is the services, not the infrastructure. The majority of Fernald's budget goes toward salaries. The question is whose salaries? Do they all work there? Has the budget been inflated? These are all questions that can and should be addressed in redesigning Fernald to operate more cost-effectively.
As for my statement elsewhere that closing Fernald would provide more money for the providers–it's a fact that this is what would happen when Fernald and the other facilities are closed. The people in these facilities–and the number is closer to 1,000 than 200–need a much higher level of care than does the average client in the DMR system. It's much more expensive–another reason why it doesn't make sense to say it's less expensive per client to provide care in the community than in a state facility. The clients in each setting have far different needs.
To refer to a segregated institution as “home” is a stretch. True individuals at Fernald may have known no other residence in decades, but that is because on other options were offered to families.The per person cost of Fernald is over 204,000 per person based on budget and population listed in the article.I challenge the reporter to visit Fernald and determine if he/she believes the individuals at Fernald are enjoying a 204,000 dollar per year quality of life.More importantly, neither the 198 Fernald residents or the 41,000 plus persons with developmental disabilities, in institutions nationwide had a due process hearing before being deprived liberty.When I read the US Constitution I think I read something that an individual could not be denied of liberty without due process. Note: Adult persons with mental illness cannot be institutionalized without a court review. Why human and civil rights as outlined in our Constitution do not apply to people with developmental disabilities I will never understand.I look forward to the day that all persons have the opportunity to enjoy”liberty and justice for all.The group homes may not be the best solution, especially if they are going to house six residents and the individuals will have no say in where the group home is located, with whom they will live or how the home is operated.The better solution is to utilize individual budgets and a self determination model to provide critical supports and services. In brief a capitalist system where an individual is able to decide which services and supports he and she requires and has a say in how to allocate scarce resources.”There really is no place like home” A segregated facility may be someone's residence. It can never be a home.Family,home and community are natural and empowering environments. Institutions result in dependency and loss of freedom.I also ask the reporter to visit Fernald and speak to the residents. I am fairly certain if one asks the residents where they want to live, many would not choose Fernald.In the late 70's I was a houseparent for adults with developmental disabilities, who had transitioned to group homes.Nine out of Nine of the residents were so brutalized by the institutions they were afraid to even visit the facility.In 1998, my daughter Maria sustained a severe brain injury at age 12. Maria is at risk of institutionalization or other form of out of home placement.Maria will tell you the institutions are “hell holes” Maria will also tell you she wants to live in her home, with her family or friends of her choosing.Maria wants to attend our local church and Maria wants an opportunity to be included and build relationships with all people.A segregated facility or group home will not allow for such opportunities.The answer is Individual Budgets and Self Determination based on objective assessments of critical support needs and individual hopes and aspirations.Kind Regards,Frank Tettohttp://www.mycommunitycareteam.comhttp://www.tetto.org
In the past, the Fernald families were loathe to consider compromise, as many had brought their children there as toddlers, and those children were now middle aged and had lived there all their lives. The shock of moving them would be enormous.
Now, the families have bowed to economic reality and advocate for a postage stamp canvas. This is a good and healthy step! Judge Tauro did not consider this, though, and I believe his ruling is to preserve the ENTIRE campus.
Bill – many parents are now elderly, and cannot take care of their children. They also have very real misgivings about the quality and calibre of newly established group homes, especially for the more profoundly disabled.
Not to belabor it, but the documentary 'Back Wards, Front Wards' really captures this dilemna.
The advocacy community needs to acknowledge that these are individuals with individual circumstances, not case studies or political bargaining chips – some Fernald residents don't even HAVE family to look out for them any more, but are sole survivors of their families. The Fernald community needs to acknowledge that gazillion of scarce human services dollars are being used inefficiently to care for the few when many go in need.
You really aren't on different sides, here.
Peter, you're the first commenter, I believe, to acknowlege the postage-stamp proposal. Thank you.
I do think that Judge Tauro's ruling does allow for the preservation of the Fernald Center on a portion of the campus. The postage-stamp approach was endorsed by U.S. Attorney Michael Sullivan, and Tauro accepted Sullivan's recommendations. I'd just note that while Fernald could certainly be operated more cost-effectively, no one has yet used an apples-to-apples comparison to demonstrate that care is more expensive per client at Fernald, even today, than it would be in the community. No true cost-benefit analysis has been done on this.
Thank you, David, for your willingness to take this issue on. I thought the silence was rathering disturbing, too.
The residents at Fernald are profoundly impaired people, many of whom are medically fragile, dually diagnosed and multiply handicapped people. They need the centralized service delivery found in a campus setting because their needs are so overwhelmingly intense. On the campus of Fernald, these people have access to all kinds of therapies that they would have to make appointments for in a “community” setting. They get respiratory therapy, physical therapy, occupational therapy, dentist, Tech support for their assistive devices and let's not forget the pool and grounds. If we can agree that centralized service delivery on a campus is appropriate for college students (residence, education, medical, sports) and the elderly (assisted living centers, over 55 residential halls etc) then why not for people with mental retardation? Why not when a California study showed that deinstiitutionalized people who cannot walk, talk or toilet themselves die at a 72% higher rate? And a follow up study showed that the rate was even higher? There's also a cost comparison study that refutes the myth that community services are “cheaper” than campus style living.
http://www.vor.net/resources.htm Check this site out, please. And look at the abuse and neglect report too. Do you really think the community is a curative panacea? Try not to throw up when you think about what has happened to these poor people.
I will tell you why some people say “no” to campus living for disabled people. Follow the money. The vendor advocates like the various ARCS are multimillion dollar service providers for the state. It's a matter of public record, and many of them are also members of MARC. Please understand that each member of Fernald is entitled to “the same as or better” level of care for the rest of their lives as the results of a federal lawsuit and their money follows them wherever they go. The vendors are dancing in the streets over the news that our caring and concerned Governor is going to appeal the ruling.
It is disturbing that people who purport to advocate for people with disabilities insist that it must be closed for the “common good.” Who's common good? Certainly NOT for the profoundly impaired residents of Fernald. Closing Fernald isn't good for anyone but the vendors and people who think there's some justice in watering down services or taking them away from some of the most fragile people in the Commonwealth. Common good? Not by a long shot.
I did have a loved one at Fernald for many years. My baby sister wasn't supposed to live to be 12 – but she lives to be nearly 39. She was profoundly impaired; on a good day, she weighed 65 pounds. She was oxygen dependent, and couldn't walk or talk. She had spastic quadripalegia and a trach and g-tube. She was not going to get an assisted living apartment or a job at the Stop and Shop. She is fairly representative of the people who still live at Fernald, particularly the Green building.
For those who think that Fernald is not a community – let me tell you, it's clear that you've never experienced the place. Mass is celebrated in the chapel every Sunday. There are events and fairs – even workshops. We have all the holidays and there's even a great Thanksgiving Dinner in the rec center. Fernald is a community of families who choose centralized service delivery for a reason – because their loved ones need it.
Save at least a postage stamp for the people who need it and ignore the myths being propagated by those who can profit from Fernald's closure.