Civic Engagement

I HAVE RECEIVED FERNALD UPDATES.. MY OPINION IS THOSE NOW CARED FOR THERE ARE CARED FOR BETTER THAN IN DECADES PAST. THE ADVOCATES THAT GIVE EITHER DIRECT CARE OR RELATIVES FRIENDS ECT, SHOULD BE MORE LISTENED TO.................... AS A PARENT OF A SEVERELY[PROFOUNDLY] HANDSOME 24 YEAR OLD SON DANNY. OF WHOM I HAVE CUSTODY AND AM PROUD TO BE HIS DAD AND PRIMARY CARE GIVER I SUPPORT KEEPING FERNALD OPENED! DANNY CANNOT SPEAK WALK TALK SWIM OR SEE. YET WE CAN SEE IF WE LOOK AT OTHERS THAT THOUGH [AS DANNY] CANNOT FEED THROUGH THE MOUTH DUE TO CHOKING AND ASPIRATION ISSUES OR MIGHT DAILY MISCONNECT ELECTRICAL STIMULI WHICH FIRESTORMS THE BRAIN TO SUFFER SELF AS SEIZURES OR MANY OTHER HINDRANCES TO WHAT MOST DO ACCEPT AS SIMPLE PLEASURES....,,,,,,,, MAY MORE BE DONE TO HELP THESE IN OUR WORLD THAT ARE INNOCENT AND MOST NEEDFUL I COULD ONLY END BY WONDERING IF THE GOVENOR AND HIS LT. GOVERNOR AND ALL THE HIGHLY PLACED OFFICIALS OF VARIOUS HUMAN SERVICES HAVE OR WILL VISIT ...

Let us all be clear on what is going on. ARC is a scam with is strong handed push to close Fernald. There should be an investigation into ARC and those connected with it in regard to financial benefits they receive in having Fernald shut down. The "Postage Stamp" solution makes great sense. Fernald should remain open in a smaller form for the profoundly retarded. Community based solutions make sense for those that are NOT profoundly retarded. Fernald is a model cost effective and humane solution.

There have been a lot of misconceptions about what the Fernald families want. The Fernald families are not seeking to preserve the status quo.

The families’ “postage-stamp” proposal for Fernald and the campus will allow the development of the majority of the acreage there. At the same time, they are seeking to preserve a smaller, more cost-efficient facility for persons with mental retardation at the present site. Their only requirement is that the faciity continue to provide services, consistent with federal Title XIX requirements of the Social Security Act.

This is a plan for a win-win situation not only for the families and residents, but for the community and for the Commonwealth’s taxpayers as well.

I am in favor of Judge Tauro's rulings. Because of the ruling Judge Tauro has put into place, my family member was able to return to a state facility where she is now being taken care of in a professional manner with highly trained respectable staff. She was not receiving the level of care that she is now receiving while living in the community. There are some mentally retarded individuals who cannot live in the community and my family member was one of them. She needs 24 hour nursing and to know when she needs to visit a hospital she will be taken care of properly and in a humane way. There is a need for both the State Institutions and community living for any mentally retarded individual. And these individuals should continue to have the right to be able to be where they will receive the best care possible.

My sister was at Fernald over 50 years until she died recently. Her communication was limited to subtle forms of facial expression. Her nurse had been with her for over 20 years and knew how to read her. She was unable to do anything to care for herself--dress, eat, wash, etc. She was in a wheelchair. Those so profoundly mentally and physically disabled would not survive in a community home. The people, including present and past governors, who think Fernald should be closed and the remainder put in those homes have read too many romantic stories and not seen what the reality is. The people left at Fernald are fragile and need the support that their familiar environment provides. For once, do the right thing.

Judge Tauro is extremely well-informed on the issues at Fernald -- and his order got it right. It simply insists that transfers to group homes be done ONLY ON A VOLUNTARY BASIS, REQUIRING THE AGREEMENT OF THE PARENTS OR GUARDIANS.

Instead of this reasonable approach for the future well-being of these extremely disabled clients, DMR (and ARC, the association of DMR's vendors, who have their own obvious incentives for supporting DMR's position) are simply "asserting" that group home care would be "equal to or better than" the care provided at Fernald.

Judge Tauro's order in effect simply says, "Prove it."

Not just to Judge Tauro, who has once again, and rightfully, asserted his continuing authority on behalf of these clients, but also to those who are by far the most knowledgable of DMR's true capabilities, and who (unlike ARC and DMR) have no other interests to serve than the well-being of the clients themselves, i.e., their parents and guardians.

Governor Patrick, if he ...

Mr. Governor, I am encouraged by you national record on civil rights issues. It is my sincere hope that you will handle this matter while keeping in mind the MOST important institution...family. Please work with families to come to the best end result for these residents.

ARC does not have the best interests of the residents of Fernald at heart. They are opposed to Judge Tauro's decision, because they will stand to profit from sending residents of Fernald to group homes. The residents of Fernald cannot stand up for their own rights. We must continue to keep a part of Fernal open so that the current residents can live out their lives in peace.

Protect those who cannot protect themselves! Isn't that what this state and country represent? Many if not all of the residents of Fernald have lived there for their entire lives. What type of message are we sending to the future generations if we kick these people out for no good reason - to simply line the pockets of some presumably already rich development firm - I support the resisdents of Fernald - They should have the right to stay until their dying days, if they so choose!

I endorse Judge Tauro's decision! Governor Patrick should work on a compromise solution with Fernald families and families of residents in other faciities. Governor Patrick - please remember that ARC and severak other groups lobbying in favor of closure have a financial stake in the outcome. They have been quite successful in convincing people whose disabled children are not being served in the community that my brother and other ICF/MR residents are the reason why. They have lots of resources at their disposal and have used these vast resources to lobby your human services administration. If you handle this decision correctly it can be a win-win for your adminsitration and for the residents of Fernald.

Please vote on the side of common sense and right for those who cannot vote for themselves and depend on others to care for them. It is also a vote for their families and others who want the best for their loved one. State facilities are a necessity.

The State has not done its homework by carefully examining the evidence, over the years, of the effect of community placement for many of these individuals. What is there in place to justify their move now?Their move then? My sister was a RICCI class client moved into the community on the basis of many of the arguments ARC families are presenting - many of whom have with no ties to Fernald whatsoever. The fact is that the private agencies administer the care systems-many appear not to be accountable in t erms of quality controls... they seem to hide behind their rhetoric in re: the concept of competence, which places the responsibility for care right onto the retarded individual ....As great as community living sounds, the reality is otherwise; individuals like my sister who do not and cannot read, write or make complex decisions have exceptional conditions which require highly orchestrated care including dedicated medical monitoring and other kinds of monitoring, for their very ...

My aunt Ida, who turns 90 this September, has lived at Fernald for the past 48 years. Transferring her (and other of the Commonwealth’s most vulnerable citizens) out of her home – where she has had continuity in her surroundings, activities, friends, and caretakers – would have a devastating effect on her well-being. It would be unimaginably cruel.

A number of people have suggested options to deal with the economic complexities here. I would hope that Governor Patrick and his advisors would, in particular, review the following two articles: “Good Care Knows No Ideology,” which was a Globe editorial on 6/25/07, and “Thinking ‘Outside the Box’ on Fernald,” a News Tribune editorial that appeared 8/22/07. It’s time to work together here.

My sister's home has been Fernald for almost 45 years and this is the place for her. She does not belong in a community setting and she will loose many of the benefits she has at Fernald. This should be our choice and not the choice of ARC who boasts to serve all of the retarded when in fact they are just serving some.

We must end this foolishness back and forth and Judge Turo's decision should stand.

I understand that the Fernald grounds are too large for the amount of people left and we would be happy with just a small part of the grounds for our loved ones to enjoy the pool, chapel and day programs that are available to them now.

Thank you

Susan Nadile

PLEASE KEEP THE FERNALD SCHOOL OPEN!

My sister has been at the Fernald for over 35 yrs. My family & I I I think this is the best place for her! We've checked out "community housing" & do not like them. we feel she gets better care & more things are done with the residents @ Fernald. The pool (which she loves) is a big plus! We also KNOW that she is safer @ the Fernald!!! Pat K.

The DMR is putting out bogus information. The amount of $$ they are saying it takes to run the Fernald is untrue. More importantly..these people have the right to stay in their homes. DO NOT APPEAL THE FERNALD DECISION....IT WAS A WELL THOUGHT OUT, FAIR DECISION.

I have son who will soon turn 20 with severe special needs including a high level of medical complexity. Right now his only long term placement option is more than an hour away from our home in Dorchester. Many other families in the Metro Boston area face the same challenges. Fernald is located close to Boston, is a lovely piece of land, and with a team effort, modernization, and some thinking outside the box could become a community for our most fragile citizens, a respite facility for families, and provide a broader range of services and options than is currently available. The cost and realities of home care really don't add up to taxpayer savings, and often times people with complex medical needs end up staying in hospitals at a huge expense to the tax payer.

Facilities such as Fernald, Wrentham, etc. need to be continued for the custodial residents because of the quality of care received as opposed to that offered by contract residences. Those residents that cannot speak for themselves need trained professionals familiar with their needs to direct their care, not suffiently available in contract homes.

My sister has been a resident at Fernald for over 60 years, and I support the effort to keep Fernald open for her and future residents. My sister is nonverbal, and her level of retardation is considered profound, making her dependent on medications and dependent on constant staff supervision because of long-standing self-abusive behavior. In the years I have been her guardian, Fernald has done an exceptional job keeping Nancy safe and well looked after. At Fernald a full multidisciplinary team of direct service staff and clinical consultants work together to meet individual needs. My sister has staff she recognizes and feels comfortable with. She interacts with a resident psychologist and other staff who can monitor her behavior daily and make adjustments as needed. Maintaining her Self-Injurious-Behavior-free program depends on her familiar mental health care team and the psychologist who does a formal review quarterly. As her guardian I am much concerned about the efforts to close ...

Keep Fernald open. As a school committee member for a vocational school and a high school math teacher I am all too familiar with the situation in which those who cannot understand the concept that different students have different needs complain about the need for alternate approaches to education.

Different children need different approaches to education. Different types of disabilities require different types of services. It’s that simple.

We need the institutions like Fernald for the people that need this specalized care that cannot be received in group homes. Thank you. Betty Forbes

The Fernald and others like it should not only remain open for the current residents but should be refurbished and a welcome home for others who so desperately need this type of care. It is our duty to care for the people who can not care for themselves and it is the duty of our government to listen to and help the families who know there love ones needs better than anyone.

Fernald needs to remain open and it is the compassion that Judge Tauro has for the developmentally delayed that makes this decision so important. Judge Tauro recognizes the rights of the family/guardians which has been grossly dismissed by the DMR and the agencies that run the community homes. The group homes has a very flawed history...and many do not have the capacity to care for the more medically complex clients that Fernald cares for. In many instances, it is only appropriate for the client to be in a hospital setting...and the group homes are unable to support this kind of client. We need to have appropriate settings that offer the highest level of care to our loved ones...and the community setting will never be able to do this. Let's plan ahead for our family members and keep Fernald open.

My sister lived at Fernald for most of her 56 years. She couldn't talk. She couldn't walk. She was legally blind. She could not do even the most basic self care. Other than to wheel her chair in absolutely familiar in-building settings (which precluded any sort of unexpected obstacle), she could do nothing on her own. She communicated via facial expressions and indecipherable (except to those who been with her over 20 years) noises.

Fernald provided a continuum of care and opportunity to Deb that couldn’t be provided in a ‘community setting.’ I wonder, if such ‘segregated’ facilities are so detrimental to one’s potential, why we see ever more such facilities for those over 55? Why are there no angry shouts to do away with such closed communities?

GOVENOR KEEP FERNALD OPEN! I cannot imagine a more cruel or inhumane act than the fored relocation of the resident of Fernald. You visited Fernald and the residents. I cannot believe that anyone could visit the facility and the resident and disagree with Judge Tauro's decision.

A plan for the long-term care of the severely disabled is certainly essential. Closing Fernald should not be part of that plan. The Fernald provides essential services not only for the resident but for numerous others who use the Fernald's unique facilities on an out patient basis such as Tufts Dental, Shriver center and other therapeutic services. These are necessary support services for ALL the mentally retarded. Where will the disabled individuals access these services when Fernald closes. They don't exist elsewhere. The "do gooders" of ARC and other so called advocacy groups, who do in fact have something to gain financially by the closing of Fernald, always seems to leave ...

My aunt has lived at Fernald for 57 years. It is not just a bunch of buildings, it is her home. It is her community. It is her life. She does not speak but her expressions are what she has to face the world. The staff at Fernald know her expressions, they know what she can and cannot eat, they know what she likes to do. They know her. She knows her bedroom, she knows her roomates, she knows her staff. She knows her community.

It is cruel to take people from their homes, especailly aging and vulnerable people that already have challenges to face. A community home may be a good place for someone to live, For my Aunt, it is not. I am her voice and I want her to stay where she is loved and well cared for. You always want what is best for your loved ones. I want her to live out her years where she can be comfortable and peaceful. Fernals is a place where things are familiar and that is what truly makes her happy.

Please let her and her fellow neighbors remain content ...

As a group of advocates, family members and guardians of the people that call Fernald their home, we are asking that you support and respect the community in which they live. Please do not take away what they have come to depend on, their home means as much to them as our homes mean to us. It is time to sit down and negotiate the positive future of Fernald.

The Fernald League For The Retarded

Our most dependent citizens deserve to remain at Fernald where they receive the care, programs and support they need to be as independent as possible. Many have known no other home and it would be cruel and inhumane to move them into the community againt their will or the will of their guardians. We need the right of choice and we must find a way to support those who choose community placement and also those who wish to remain in their home which is Fernald. Elinor Robin Deininger

This is a longstanding civil rights issue. These people deserve to stay in their homes and should not be evicted. The state should work with families to find a solution.