Public Hearing Testimony March 18, 2015
STS Guardians Say "No" to Closing Southbury Training School
STS guardians testified at the Public Health Committee Hearing concerning S.B. 1088 – An Act Concerning Services for Individuals with Intellectual Disability – that would advance a plan to close STS and all state-run I/DD facilities.
The following is all testimony presented by supporters of STS at the hearing on March 18 and/or submitted to the Public Health Committee prior to the hearing:
Rita Altman
I am a native of Connecticut whose brother, David Eisgrau, was a resident of Southbury Training School for most of his life. He passed away at age 51 from hepatitis having been an STS resident from the time he was five years old.
David had Down Syndrome, and was profoundly retarded. Caring for him at home became simply impossible. Throughout his life, my parents and I were regular visitors to STS, were close to the staff, and were intimately familiar with his treatment. The only real problem over all of those years occurred when he was relocated to a group home.
The drop off in care was striking, and brought a cry for return to STS from the public as well as the press who were investigating the horrendous conditions. Eventually the state heeded that cry.
I understand and support the movement toward least restrictive, community-based care whenever possible. However, closing STS would be a classic example of “throwing out the baby with the bath water.” There must be an appropriate home for people with profound disabilities where they can be safe. STS provides that environment.
On numerous occasions, my family and I searched for a group home for David. We never found one where we could be confident that he would be adequately cared for and, above all safe.
I implore you to reconsider any movement to close STS. While I know the word “institution” connotes bad things, there are many wonderful institutions in this world as well, and Southbury is certainly one of them.
Judith H. Atwood
I am the co-guardian for my brother, Robert Hirschberg, a resident at Southbury Training School in Cottage 17. I strongly urge you to vote NO on this bill.
As a public school teacher in Connecticut, I am well aware of the prevailing philosophies about the least restrictive environment for individuals with intellectual disabilities. For individuals with less severe retardation, community placement may be the least restrictive and most appropriate. For my brother, whose disability is severe, Southbury Training School is clearly the most appropriate environment compared with community placement.
My brother has been a resident at Southbury Training School for nearly 40 years. The staff at the facility has created programming that maximizes his potential even though he is profoundly retarded with no speech. He has been surrounded by knowledgeable and caring professionals who have allowed him to live a happy and secure life. His medical needs have been met promptly and professionally when needed. My family and I have visited often and have attended many of his PPT meetings.
I visited a community placement home several weeks ago, accompanied by two of the professionals from Southbury Training School. I have several concerns about community placement for my brother.
First, I feel that there is not as much oversight at a community placement as there is at Southbury Training School. Private providers inspect each other, while the state facility is inspected rigorously and continuously.
Second, I do not believe that a community placement can provide my brother with the full program of services he has had at Southbury Training School. The reach and scope of the facility cannot be replicated in a private setting. He has a day program, a work program, a social program, and more.
Last, I have grave concerns about the funding that will be available for community placement. Patrick Johnson Jr.’s recent op-ed in the CT Mirror (March 13, 2015) highlights funding cuts that have been ongoing for many years and how this creates shortfalls for nonprofits that will impact services for people in their care.
In closing, I believe strongly that the collective power of Southbury Training School has produced the best quality of life possible for my profoundly mentally retarded brother, and I hope that you don’t disrupt the only home he’s known as an adult.
Thank you for keeping the best interests of individuals like my brother in mind during your deliberations. Please let me know if I can provide any further information.
Tracy Atwood
I urge you to vote “NO” on S.B. 1088 – An Act Concerning Services for Individuals with Intellectual Disability.
Closing the Southbury Training School (STS), a 1500 person facility, and moving the remaining occupants to already overtaxed group homes, while more than 2000 are on the waiting list, seems counter intuitive. Is this a prudent use of public funds? Has a cost study been done comparing STS vs. community placement for the care of profoundly retarded, elderly persons, many with multiple health issues? How many of those on the waiting list could be accommodated at STS if it was reopened? What are the cost implications of utilizing the full capacity of STS vs. building new community homes?
As a Connecticut taxpayer and the brother of a long-term resident of the STS I encourage the legislature to retain this excellent facility and program.
David Atwood, 61, has been at STS since 1960. He has Down Syndrome and the mental level of a one and a half year old. David is very active and consumes 4000 calories per day. He is thriving at STS where he lives in a ‘cottage like’ subgroup of 4 -6 men of similar mental level.
My sisters and I considered moving David to a group home. We visited four private group homes and four different day programs in Litchfield County. We found one with both an opening and a very dedicated director. Within a month the director left which was a reminder of the staff turnover issue with private sector facilities. We continued with the process to place David in this group home. The STS staff took him there several times, but his high noise and energy level must have been too disruptive. The private agency said they would not accept David.
On behalf of my brother David, I urge you to keep in mind all those whose needs are now being met so well at STS, and for whom a group home setting simply may not work. We have not found, and I doubt we ever will, any arrangement that comes close to the quality of life that David has had at Farm 1 and his current home in Cottage #18.
Staff turnover rates in group homes is higher, on-site availability of skilled nursing staff is less, and outside space that is so important for David is less. It is more efficient to provide specialized care and services to a large group of severely handicapped persons at STS than to the same individuals dispersed in small units throughout the state: one campus with 300 persons rather than 80 four person facilities.
Moving the STS residents, average age 67, to community group homes will not improve the quality of care. A campus setting such as STS is a more cost effective way to deliver the services required for profoundly and severely retarded persons according to the 2003 CCS study and the 2009 CCS update.
Community group homes may be right for some people, but we know from experience they may not work for David. As a Connecticut taxpayer I encourage the Health Committee to vote no on S.B. 1088 and to introduce legislation to open the excellent facilities of STS for the admission of new residents.
Ann Dougherty
I wrote a little poem many years ago. Perhaps, now is a good time to reveal it.
Do not forget this place
For you have known it well
You have watched it challenge the wind
Dispel the fog
Catch the swirling snow in the silence of the night.
You have run its grassy hills
And embraced its autumnal colors
Been sensitive to its expressions
And listened to its feelings
You have forged it and fashioned it
And with unshakable strength
You have encouraged it
To advanced confidently.
Charlie was admitted to Southbury Training School in 1942. His sister Gracie was admitted at the same time. He lived there for 56 years and she for 69. It was their home – their caring, loving, compassionate, and benevolent home. It was a beautiful, safe campus that attended to their every need. Both were born profoundly disabled. I became the guardian when their parents died.
My Brother Michael was admitted to STS in 1948 and lived there for 66 years. Michael was born with marked asphyxiation being self-abusive, extremely destructive and severely disabled.
In the early years there were no group homes. There was no choice. Most of the time family pain was overwhelming. My parents and others devoted their lives to enriching STS. I remember as a youngster, traveling to Hartford to the hearings, the discussions, and the debates to petition for improved care. My father served on the very first Governor’s Council, my mother was appointed to the first human rights committee.
There were no day programs in the early years. We appealed, implored, and solicited the State to improve conditions. Finally, STS became ICF – a lifetime of work and a state of the art facility.
There should be choice. The Training School serves a noble purpose. For the most part, those who remain are non-ambulatory, physically distorted, medically fragile, and elderly. The majority cannot go to work. Some cannot participate in daily activities. Many cannot speak or lie in bed being rolled every hour or two. Numerous residents are in wheel chairs. Respiratory therapy, physical therapy, feeding tubes and frequent medical visits to the clinic dominate daily activity. Still, STS is their loving home.
David came to Southbury in 1953. James was admitted in 1957. Our parents had a common cause and became lifelong friends. When David and James’ parents died, I became their guardian. I visit every week – sometimes several times a week. In the early days my parents and their friends would have discussions about their disabled children, the effects on family members, future care, etc. One particular memory remains in my 72-year old mind to this day. They wished that Gracie, Charlie, Michael, David and Jamie would die before they did – so no one else would have to bear the “burden.” Those comments disturbed me for years. Now I understand what they meant.
Please keep STS open for those who require very specialized, continual medical attention. Include skilled-nursing facilities, enhance the medical and dental programs (more than 500 from the community come to STS for dental care), and provide respite cottages. Perhaps legislators could vote to repurpose or reopen STS for those who would benefit from its services.
I completely understand what “Families Can’t Wait” are going through. I signed their petition. We went through the same – so very many years ago – defending, protecting and safeguarding the disabled.
Thank you for your time and kind consideration in this very important discussion.
Hugo Dwyer
We are here today to discuss SB 1088, a bill proposing closing state operated facilities including the Southbury Training School (STS) and five regional centers over the next five years. This bill would determine the state’s policy on treating the I/DD population for decades into the future.
And that policy is headed in the wrong direction.
Under SB 1088, CT would close all state operated ICF/DD facilities. The State would be abdicating its responsibility for maintaining a vital stake in the social safety net for the I/DD population. It would in effect, entirely privatize the housing and health services for CT’s most vulnerable citizens, giving up CT’s considerable assets forever instead of maintaining them as part of a more comprehensive system. It will be difficult, almost impossible, to turn back once this has been done and a future generation realizes the magnitude of this error.
First of all, there are no funds available to adequately move people from STS or regional centers while addressing the needs of the waiting list.
Currently, it takes one to two years to move an individual from STS to a group home, at a current rate of approximately 40 people per year. By the time this bill were to be enacted, it would more than double that rate, likely putting many of the people moved at risk or putting them into facilities that don’t completely address all of their needs for the sake of meeting an unrealistic and ill-considered deadline.
It would require the building of hundreds of new facilities or refurbishing existing ones. It would require recruiting staff and training to meet the requirements of some of the most profoundly disabled patients in the system. And not all of these homes would be subject to the same standards and levels of inspection and reporting required of existing ICF/IID’s like STS.
Furthermore, each move would require countless hours of planning and supervising for the parents, siblings and guardians of the residents to make sure that everything is in order in the new homes. Many of these parents and guardians are elderly, and many live at a considerable distance from their wards and loved ones. To say this would be costly to the state, and disruptive and upsetting to the families of those involved is a gross understatement.
SB 1088 would divert funds away from the urgent and time-sensitive needs of families on the waiting list, and away from better utilizing CT’s existing assets, and divert them toward changing the residence of people whose needs are already being met and whose families and guardians wish for them to age in place.
Since the 1970’s there was a movement to create smaller group homes for people who should not be living in larger institutions, an idea that has proven to be beneficial to many, but not all members of the I/DD community. At some point in the 1980’s, CT lawmakers took this a step further and cease admissions to state run facilities and to move all of CT’s I/DD citizens to group homes. Now, after 30 years of pursuing this direction, we can see that it has failed. The fact is, per capita costs at facilities like STS have gone up due to the loss of economies of scale, while private operators of group homes generated enough facilities to meet the needs of CT’s I/DD population. The result is that CT still has a waiting list of over 2,000 people, the DDS has under-utilized its assets like STS, and the state’s government has devised no particular way out of this hole except to dig deeper. And that’s exactly what SB 1088 does: it digs us deeper into that same hole.
It’s time to stop digging.
CT needs a comprehensive system of care that includes both state-run and privately operated facilities, tailored to the needs of individuals. These needs change over the course of people’s lives, especially as age and physical illnesses compound their existing disorders. Small homes simply cannot adapt to some of these changes, and that’s why larger facilities are such an important component in a comprehensive, lifelong system of care.
Ideally, people should be able to move to whatever environment best suits their needs. But this is costly. That’s why there must be a complete and inclusive plan for how to use all of the available facilities to their fullest efficiency and effectiveness. While group homes and individual living arrangements are great for those who meet these criteria, there must be good ICF facilities with a wide range of medical, behavioral, and psychiatric services available for those who need them, when they need them. CT has these facilities, but they are not using them to their fullest extent. What’s worse, misguided advocates are writing legislation like this bill in an effort to close them. This must be stopped.
I respectfully ask that you vote NO on SB 1088, and encourage the new Commissioner of the Department of Developmental Services to develop a comprehensive plan for helping all of the intellectually and developmentally disabled people in Connecticut in a manner that best uses all of the resources available and includes long-term planning for developing new ones.
Hugo Dwyer
Thank you for allowing me the opportunity to testify before your committee yesterday in Hartford, regarding Raised Bill 1088. I spoke late in the day, and the remaining members seemed tired (deservedly) and anxious to move things along so they could hear testimony on the next bill. For your convenience and for the benefit of those Committee members unable to attend, here is a summary of my concerns.
1. The committee and its individual members should consider the deeper ramifications of SB 1088 very seriously. Their decision here will determine the state's policy for decades to come. Endorsing the bill will effectively abdicate the state's position of responsibility for providing housing and services for the neediest segment of the social safety net and handing that responsibility to the private sector, where profits become part of the decision making process. Once they give up that position, and their considerable assets like STS and its buildings and grounds, there will be no getting them back, ever. Decades from now, if and when the private providers fail to perform adequately, there will be no way to fix the problem. *
2. In 1986, it was determined that admissions to STS would be closed, that the population there would be allowed to age in place or move to group homes, and that private providers would handle the needs of the I/DD (then mentally retarded) community. The result of this has been that services at STS have become more costly, having lost the economies of scale, while the number of people waiting for services in CT now stands at 2,000 because the private providers have not been able to provide the required services. This plan has not worked as projected.
3. There is no money for this bill. If the State of CT cannot find the money to find a home and a bed for the next person on the waiting list, how can they find money to move 500 people out of STS and the 5 regional centers? And what happens to the people on the waiting list while the state is diverting funds to move people out of STS and group homes for the next 5 years?
4. Alan Bergman, Speaking on behalf of the ARC of CT, claimed that not all of the people moving from STS will need to move into group homes. This is patently incorrect. Most of the people at STS have high levels of needs. Most of them are elderly and are their parents and siblings and guardians are also elderly. They will need homes equipped quite specifically for their needs. These will not be the like most of the existing homes. They will probably cost more to build. Since there are about 500 people that need these homes, and the new recommendation is that homes should have about three people in them, maximum four, there will need to be about 125 -167 homes built to accommodate this move. I ran out of time, but I wanted to also add that I have been told that the average time to transition people from STS to the community has been approx. 18 months, and that about 40 people per year have been moved over recent years. In order to meet this 2020 plan, the state would have to more than double that number of people and cut the transition time in half. That would put many of these people at great risk.
In Georgia, more than 440 individuals with profound disabilities were moved from their facility homes between 2011 and 2013 and two facilities were closed, before very high mortality rates, hospitalizations, injuries, assaults, and elopements resulted in a federally required moratorium on such transitions. According to the state's own reporting, 223 people died. Community developmental disability providers reported 2,456 critical incidents or 72% of all incidents during this report period, including but not limited to mortality. Other "incidents" were hospitalizations, injuries, assaults, and elopements.
5. CT needs a comprehensive system of care that includes both state-run and privately operated facilities, tailored to the needs of individuals. These needs change over the course of people’s lives, especially as age and physical illnesses compound their existing disorders. Small homes simply cannot adapt to some of these changes, and that’s why larger facilities are such an important component in a comprehensive, lifelong system of care. The state must provide the safety net that covers the gaps that will occur in any system run by private, for-profit providers and “non-profit” providers. Such a system is costly. That’s why there must be a complete and inclusive plan for how to use all of the available facilities to their fullest efficiency and effectiveness. While group homes and individual living arrangements are great for those who meet these criteria, there must also be good ICF facilities with a wide range of medical, behavioral, and psychiatric services available for those who need them, when they need them. This is the most critical part of our social safety net. This is the reason we have government and this is what makes us a society and a community. Connecticut has these facilities, but the state is not using them to their fullest extent. A campus like STS could act as a Community Resource Center, providing medical, dental, psychiatric, and behavioral services to the private group homes as well as to the residents of the state facilities, cutting costs. It could provide a Skilled Nursing Facility for elderly I/DD patients, and it could house people in transition, as well as provide temporary respite services for families who have their I/DD son or daughter living at home and need to know that their loved one is cared for if they take a vacation, have their own medical emergencies, or if something happens that requires that they leave the state for a few days. Southbury Training School should be better utilized as part of the comprehensive solution to the problems of the DDS, not sacrificed on the altar of privatization.
I respectfully ask that you vote NO on SB 1088, and encourage the new Commissioner of the Department of Developmental Services to develop a comprehensive plan for helping all of the intellectually and developmentally disabled people in Connecticut in a manner that best uses all of the resources available and includes long-term planning for developing new ones.
Thank you for your consideration,
* When my sister and I went to look for a group home for my brother Tom as a part of our due diligence to investigate alternatives to STS under Messier, we were told that there were no plans to build any homes that were PICA-safe environments, that there were already one or two in the state, but that none of the private providers were interested in building another at that time. PICA is a behavior involving picking up small items and swallowing them. This can cause choking or perforation of internal organs, usually resulting in death or hospitalization depending on where the object is lodged. PICA homes are expensive and require higher staffing and extra training of staff members. Tom and several other residents of STS (I believe there are 8-10 of them) would need PICA safe environments. What happens to people with PICA behaviors when private providers don’t want to build PICA homes?
Martha M. Dwyer
President, Home and School Association of the Southbury Training School, Inc.
Member, Board of Directors of the Southbury Training School Foundation, Inc.,
Guardian of 130 individuals, 60 of whom have been moved, by the Foundation, into group homes.
I urge you to vote “NO” on S.B. 1088...
SERVICES IN THE COMMUNITY
Money - “For almost a quarter of a century the state has depended on private nonprofit organizations to provide services to people with disabilities in Connecticut. This includes services to people with intellectual and developmental disabilities, mental illness and addictions. For over two decades, the average increase to the contracts with these providers has been less than one percent per year . . . Although few nonprofits have gone out of business, a large number are on the brink and many have and will further reduce the number of people they serve.” 1
Quality - “More than 150 media reports in more than 30 states since 1997 reveal systemic concerns in small settings for people with I/DD, including deaths, abuse, neglect, and financial malfeasance. In November 2011, The New York Times that more than 1,200 people with I/DD in the past decade have died in group homes due to “unnatural or unknown causes. . . . U.S. Senator Chris Murphy (D- CT) has called for a U.S. Department of Health and Human Services Office of Inspector General investigation to ‘focus on the prevalence of preventable deaths at privately run group homes across this nation and the widespread privatization of our delivery system.’2 In Georgia, more than 440 individuals with profound disabilities were moved from their facility homes between 2011 and 2013 and two facilities were closed, before very high mortality rates, hospitalizations, injuries, assaults, and elopements resulted in a federally-required moratorium on such transitions. Proponents of deinstitutionalization now recognize that past closures have not resulted in adequately funded community systems, and to adequately fund such systems, i.e., provide people the care they need, will cost at least as much or more than facility-based care:
“It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.” 3
[I]t is reasonable to expect that the cost gap will shrink [or reverse] as people in the community receive more services. This may be especially true because a significant part of the cost gap reflects differences in the wages paid to workers in institutional and community settings.” 4
THE LAW
In 1999, in the Olmsted v. L.C. landmark decision, the Supreme Court expressly cautioned against forced deinstitutionalization, the “termination of institutional settings for persons unable to handle or benefit from community settings.” 5 finding instead that the Americans with Disabilities Act (ADA) only requires community placement when an individual’s treatment professionals determine community placement is appropriate, such placement is not opposed by the individuals, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with disabilities.
Masterful messaging by well-funded organizations and federally funded lawyers wishing, for various reasons, good and bad, to close “institutions” quickly (and incorrectly) characterized Olmstead as a deinstitutionalization mandate.
THE RESULT
We hope that you and all parents, family members and guardians of individuals with I/DD will create a fair and cost-effective means to address the situation in Connecticut .
With a careful analysis of the costs to care for people in the community, assuming fair wages (and the ability of providers to pay fair wages), versus at STS (including an analysis the costs, especially per capita, expanding STS’s services and its population), with proper recognition of the degree and cost of necessary services and the cost to create locations where appropriate care can be provided, plus all of us working together for common goals we can make Connecticut what it once was – one of the states where the best services were provided to the I/DD population.
Hopefully we will not lose an invaluable resource but will instead make uses of it that will benefit many members of one of our most needy populations.
(Footnotes)
1 OP-Ed published in the CT mirror 3/13/13 written by Patrick J. Johnson, Jr., interim executive director of the CT Association of Nonprofits Inc.
2 People as Pendulums: Deinstitutionalization and People with Intellectual and Developmental Disabilities, published in Nonprofit Quarterly, 7/16/14, written by Tamie Hopp VOR Director of Government Relations & Advocacy. Citing “Abused and Used: In State Care, 1,200 Deaths and Few Answers,” New York Times (November 6, 2011) and Murphy, Christopher S., U.S. Senate. Letter to U.S. Department of Health and Human Services Office of Inspector General investigation (March 4, 2013).
3 Samuel R. Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardoza L. Rev. 1, 21 (2012)
4 Id. at 43; compare, Kevin Walsh, et al, Cost Comparisons of Community and Institutional Residential Settings: Historical Review of Selected Research, Mental Retardation, Vol. 41, No. 2: 103-122 (April 2003)(“Findings do not support the unqualified position that community settings are less expensive than are institutions and suggest that staffing issues play a major role in any cost differences that are identified).
5 People as Pendulums, citing Olmstead.
Robert J Gorman Jr.
My sister Ann was born in 1945 and has resided in Southbury Training School since age 4. Ann was born with a “birthing injury” which was caused during her delivery by a forceful use of forceps, which pushed in the back of her skull. This caused a severe brain injury, cerebral palsy and “profound” impairment. She was placed in Southbury when her physician informed my father that taking care of her at home was going to kill my mother. As devastating as it was for my parents to remove Ann from her home they found some relief/comfort in knowing that Southbury was such a highly regarded residential placement. Ann cannot speak; she cannot read or write; she cannot feed herself; she cannot clothe herself; she cannot go to the bathroom on her own. She can only walk/shuffle with significant assistance, which includes a walker to which she is tethered and which requires constant assistance by a helpful person. Ann requires 24-hour care and 24-hour attention. She could not be a more fragile, vulnerable person.
Southbury Training School has been Ann’s home. Its staff is kind, attentive and loving to my sister. One or two of the staff there knit clothing for her on their own time and always ensure that if her rocker requires painting or repair it is done; if she could use a new “country music” CD they get her one; if she seems agitated they know why; if she is happy they know why; if one or two of them to whom she has grown very close walks away from her to get something for her she gets anxious and a little agitated due to this, albeit minor, “separation anxiety”. If Ann has a scratch on her or a bruise on her ankle I receive a call from either the nurse stationed in her cottage, the supervisor of the cottage or even the physician on staff. If she needs to go for testing or any kind of medical care I receive a call from the on-site staff physician. When Ann had cancer surgery several years ago I was consulted by the staff physician who then made sure I was consulted by the surgeon of the hospital. Even though my other sister and I were at the hospital during surgery, Ann was accompanied to the hospital, not just by the transportation staff, but also by a loving staff member who stayed the entire time even though it was her day off.
Most of the staff in Ann’s cottage has been involved in patient/resident care for many years. They are fairly well paid with good benefits, as they are state employees. They clearly are conscientious about the care they give. Care of patients like Ann is demanding and challenging. It is not something anyone can provide. Most of the residents in Ann’s cottage are as vulnerable and fragile as she. If I stop by the cottage without calling in advance, the care and attentiveness I find is the same as if I am there with an appointment – no one has to “dress-up” or change their behavior for a visit. Ann is brought out to an off-site day program most days of the week. There she is surrounded by other individuals, only some of whom are from Southbury. They take her in her wheelchair on frequent outings. Even though Ann is incapable of understanding much around her everyone acknowledges that the change of scenery is good for her. When she returns to Southbury from the “day program” she is cared for by people who know to check to see if she had a good day and is still thriving after the day out. (One staff member actually does not like to see Ann go out for the day as she misses her as one would miss a daughter.)
The thought of privatizing Ann’s 24-hour care is terrifying. Having her care be subject to “market forces” seems unconscionable. I understand that every group home has to be assessed on its own merits, however they are often in a state of flux. They do not have the kind of staffing or the stability in staffing that Southbury does. There is much turnover in staff in many of the homes. Obviously there is a reason for that. One reason is that they do not provide the wages and benefits that the State does. I am personally familiar with experiences of some of the group homes’ employees. I have learned of employees working as a part-time job running a cottage for a shift with one other part-time worker with very little training and when significant difficulties arise they learn that the off-duty head of the cottage has turned off his phone and the supervisor who is supposed to be on-call does not answer the phone. I have learned of physical intimidation as a means of exercising control over vulnerable residents. I have learned of insufficient training and supervision. I have learned of inadequate staffing for very vulnerable residents. Many of the group homes are completely out of the public eye.
I have never learned of any mistreatment of my sister or her fellow residents in her cottages at Southbury. They are under constant scrutiny at STS. If a staff member misses a shift another staff worker works an extra shift; they do not utilize “temp workers”. If my sister were to be mistreated or abused or made to sit in a wet diaper for eight hours she could not help herself, nor could she tell us. When she is at STS she never has to tell us of those things, as they do not happen.
I understand the motivation for “placing” persons with disabilities in a community setting. It is wonderful that some such individuals can be accompanied on a walk downtown or around a mall or a park and interacts with the community, which can become their milieu. Unfortunately that is only a positive option for some. For people such as my sister this is not an option. Her milieu, her family is those in her immediate setting, which is Southbury Training School where she has lived for 65 years. It seems most unfortunate that at this time some people who advocate for persons with disabilities are advocating for the closure of STS. It is so unfortunate that some feel they have to pit the very vulnerable against the extremely vulnerable.
I hope that those who vote on STS’ future will spend meaningful time there to see the care that is provided to the residents. I hope they go and see the bonds that have been so obviously forged between the residents and many of the staff. I wish STS could be opened for more individuals who seem to be very much in need of a residential placement.
I would ask that you not pass a bill calling for the closure of STS. I ask that you not pass S.B. No.1088. I would ask that you respect the residents at STS as people and not as a burden and respect their need to stay in their home with the people who treat them so well. They have been afflicted with a station in life that we would not wish on anyone. I would ask that you at least allow them the comfort and care that comes with staying in their home.
Ruth Hirschberg
My husband and I moved to Connecticut from New York in the late 1970’s so that our son could enter Southbury Training School.
Robert was born in 1960 with profound mental retardation. He is nonverbal and has some very severe behavioral problems at times. We were able to care for him at home until he was nine years old. Then he attended a residential school in upstate New York until he became too old to remain there at age 16.
We searched for alternative private options, and he was turned down at school after school because of the severity of his retardation. Then we began our search for public institutions in New York, New Jersey, and Connecticut. We found that Connecticut’s Southbury Training School was by far the best option. We did a broad three-state search for the best home for our son, and his ability to live at Southbury Training School brought our whole family to Connecticut. My daughter became a public school teacher in Connecticut, and several of my grandchildren have been raised in Connecticut. We moved to Connecticut even though my job was in New York and my husband’s job was in New Jersey. For our family, it was the best decision we ever made.
The care our son has received over these many years at Southbury Training School has been extraordinary. The quality of the staff as well as the care and professionalism of everyone involved in his day-to-day life has allowed him to live the fullest life possible for him.
Our family has visited Robert often, and we have had the opportunity to interact with many of his caregivers. We consistently found that each one of them knew Robert well, could tell us what he had been doing, and showed affection toward him. In addition, we attended many of the quarterly PPT meetings and were able to hear about the complete program that was in place for him. From his day program to his work program to his social programs, Southbury Training School has provided him with a full life.
One of the discussions that have been ongoing for at least 20 years has been the imminent closure of Southbury Training School. We have been counseled about community placement, but we had many concerns as to whether that care could be as complete and comprehensive as the excellent program in place at Southbury Training School. This is the only home Robert has known for nearly 40 years, and we believe the upheaval in his life with a move to community placement will not be in his best interests. In addition, this would be very traumatic for me as his guardian. I am now a widow, aged 89, living in a senior living facility. I strongly urge you not to pass this bill, as it will have negative consequences on many of the residents at Southbury Training School, including my son Robert.
Diana Mennone
My name is Diana Mennone and I am here to speak in opposition to the Raised Bill 1088 to develop a plan for the closure of intermediate care facilities for individuals with intellectual disabilities. My chosen career was as a Special Education teacher at Southbury Training School (STS) for 33+ years, retiring in 2009 and I have continued my involvement with the school and with the Department of Developmental Services. I was appointed by Governor Malloy to the STS Task Force and the STS Board of Trustees, representing the Trustees on the Council on Developmental Services. I also serve as Secretary for the Home and School Association of STS, a non-profit organization dedicated to enriching the lives of the people who live there. My heart belongs to STS and many of the people who live and work there. I am speaking on my behalf but I think I also speak for those elderly parents and the founders of STS who thought their loved ones would live out their lives in the only home they’ve known for decades.
On a more personal note, my brother, Gary has resided at STS since 1977 and I am his co-plenary guardian along with my sister and my elderly mother. Gary has a rare neurological disorder, which has resulted in a multitude of physical, sensory and cognitive challenges. Because he cannot independently move his body, he has a specific re-positioning schedule that limits his time for community trips. As he and many others at STS age, they require and receive more specialized services including highly enriched medical care and even hospice. The well trained, dedicated staff at STS work as a multi-disciplinary team to meet unique and complex levels of need. Some of the long-term direct care and supervisory staff grew up in families where previous generations provided loving care to the individuals at STS. We are all family. Gary and others enjoy life in an individualized home, not a “warehouse.” It sits on a beautiful campus with opportunities for day programs, recreation, music therapy, and integrated community experience. Think of it as an assisted living facility for senior citizens.
The Messier Settlement Agreement (Richard Messier, et al. v. Southbury Training School, et al.) does not require the closure of STS. The Court also assured us as legal guardians that we are the primary decision makers with regard to community placement. Some legal guardians have chosen to move their loved ones to community living arrangements – 40 people are currently pending placement. Yet I and others feel that the behavioral and medical needs of our sons, daughters, aunts, uncles, brothers, sisters, etc. are so extreme that the community homes we’ve visited don’t meet the high level of long-term staffing and on-site medical care.
I applaud the I/DD Caucus legislators who have so passionately gotten involved in understanding and helping the folks of DDS. I look forward to working with Commissioner Murray in seeking other creative ways to decrease the Waiting List and increase services. It just doesn’t make sense to me to displace the remaining aging individuals in ICF certified facilities to replicate costly housing in numerous community living options – all in an unreasonable amount of time. This will add further expenses to an extremely strapped DDS budget and will cause safety concerns and heartache for the individuals and families involved. Much analysis needs to be done first to evaluate and resolve all the unknown complex issues.
Please VOTE NO to S.B. 1088. Be respectful of All people receiving services from dds
Connie O’Connell
I am writing in support of a “NO” vote to the closing of Southbury Training School (reference S.B. 1088 – An Act Concerning Services for Individuals with Intellectual Disability) for two main reasons: 1) Southbury Training School is an important part of a comprehensive program to support our state’s most vulnerable citizens – the intellectually/developmentally challenged and 2) STS CAN be an economically feasible solution if the State of CT will allow STS to accept new residents/clients.
First, as an example of why and how Southbury Training School is so important, let me relate the story of my sister, Christine. Christine became a resident of Southbury Training School at the age of 5 and, for the last 61 years, STS has been both her home and her community. Her level of Intellectual Disability is classified as profound and she requires assistance with ALL of her daily needs. She is paralyzed in her right arm, has a pacemaker, a tracheotomy and a respirator, a g-tube for feeding, suffers seizures and cannot speak. While her health issues re significant, she continues to enjoy a certain quality of life surrounded by professional staff that she knows and trusts. For Christine and others in her similar situation, the level of care that STS offers is ideal and its closure would mean forcing her from the place that has been her home and her community for almost her entire lifetime.
As her guardian, I visit Christine often, meet with the staff and have been impressed by not only the high level of professionalism of the staff but also by their caring attention that they give to my sister. I have visited group homes and I have many concerns about their ability to provide the care that my sister requires. Most importantly, I do not see the same level of “checks and balances” and oversight of staff at the group homes that I see at Southbury Training School. As m sister cannot verbally communicate, I would be very concerned that she could be abused and/or neglected in a group home where there is more limited and less professionally trained staff and where there is less oversight.
The second reason that I support the continuation of STS, as an operating facility is that, as a businessperson, I have heard the argument to close STS based on cost considerations. However, one needs to take a broader look at the numbers to tell the entire story. The current cost of care per STS resident is high and will continue to grow due as the number of current STS residents declines due to death or transfers. Why is this? Apparently, there is a 1986 legislation that prevents STS from accepting new clients. This is absurd, especially when there is a waiting list of over 2,000 individuals in CT that could benefit from STS’s services. A reversal of this legislation would enable STS to accept new residents/clients thereby reducing substantially the cost per client. Moreover, as STS is currently well suited to provide services to an aging population with profound needs and, as the overall general population ages and may need some of the services that TS provides, there may be a good match between STS and many of these aging groups. Therefore, to achieve the maximum economies of scale, the STS model could and should be expanded to accommodate not only the transfer of new residents into STS but also a variety of much needed non-resident client services for this and other needy populations.
Put simply, from an economic “supply and demand” perspective:
Supply:
The State owns the land – over 1,400 acres!
The State owns the buildings
The State has professional staff at STS
Demand:
The approximately 2,000 people on the waiting list is in need of services
The current residents of STS call it their home
In my opinion, the resolution to this issue hinges on the reversal of the 1986 legislation that prevents STS from accepting new clients. Open up STS to new residents and non-residential client services and the economics will make sense. In the meantime, please continue funding for this important and much-needed facility.
Rosemary Petruzzi
I am the guardian for my Aunt, Mary Lucia Petruzzzi, age 69, who currently resides at Southbury Training School (STS). I am the third generation guardian for my aunt to date.
Presently, there are no private facilities in CT equipped to serve the aged and aging population of profoundly and severely disabled I/DD residents as well, or better than STS. Many STS individuals have extremely complicated medical, behavioral and psychiatric issues.
I see this proposed bill as a “David and Goliath” situation where the advocates for the 2020 Campaign, all of which have a great deal of their own political, personal and financial skin in the game, are adamantly “calling” for STS to be closed within 5 years. With the caveat that “we” in the greatest sense of the word, need to respond, quickly to their interpretation of Olmstead and view of what is proper care for our family members. This is insane, and belies a very transparent objective for personal gain. The tables have often been turned on the ones who have needed the compassion of others the most by those who have no true sensibilities.
I simply call for common sense and a sensible long-term vision, which cannot be had by one proposed bill, or one particularly vocal constituent, or advocacy group, or even one administration. One that does not pillage a past generation’s success just to reap the spoils, yet forgetting the lessons, to be relearned all over again. I am calling for true governance that realizes the highest moral convictions and obligations for the state and it’s most vulnerable citizens, and in turn, models and mirrors back that expectation for it’s citizenry.
The Messier Case educated us, the guardians of the wards of STS about community care outside of STS. We for years now, have been apprised of all possible communities, care centers and configurations available to us if we chose to leave. The one thing not present was a clause inferred in the Olmstead Act, and our ICF ranking; that we could look forward to a placement “as good or better than STS for our wards.” That was yet to be found for a variety of reasons, which seemed to mount and promulgate as the years rolled by. Presently, the major concern is the private community placements cannot sustain themselves as viable businesses in this political-economic climate and the clients and their families are suffering greatly. (Patrick Johnson, CT Mirror, Op-ed 3/313/2015).
Add to that medically, behaviorally, and mentally involved I/DD individuals and a health care system in crisis, how do you think this will all add up? At what cost to the state, the families, the I/DD individuals, the communities, and it goes on and on.
My hope is that we can build on our flagship, Southbury Training School, and the success of it’s legacy, the administration, dedicated staff, and the longevity of its residents who, through the evolution of care for I/DD individuals were there to co-create a place of learning, compassion, peace and safety for themselves and their families.
A community grew up around this beautiful campus, to support and love the residents and all the innocence, joy and compassion they hold for us, and the world. These individuals occupy a very special place in this world, a place that is so easily forgotten or exploited by us “normal” people. It is critical we maintain a place, a safe place, where there is true caring, consistent, and accountable, for the innocents, who by no fault of their own, were placed in our midst to remind us of who “we” are.
I am strongly asking you to consider keeping STS a viable, and restored community for the I/DD citizens of CT, to enjoy for a long, long time. We need to truly take care of our most vulnerable citizens. It is unequivocally our moral obligation. Please consider a sensible, comprehensive plan that honors all I/DD individuals, their families and the great legacy we have in our resources both in our people and our capital. It is a matter of wisdom, not money.
I pray, as we move forward together, our decisions reflect our desire to set a precedent of compassionate, transparent, and accountable care not only for our most vulnerable citizens, but as a template moving forward for all our children and families in CT. Wouldn’t that be nice … Please vote “NO” for S.B. 1088.
Helen R. Phillips
I will say "No" again and again to closing Southbury Training School. Why does this seemingly endless debate have to be about only one option and no other?
Why not utilize community group homes AND institutions like STS to more completely serve the wide range of the disabled, as well as others in the community who might benefit from related services?
Those of us who want to see STS stay open and take new admissions already know the facilities, many staff and administrators. We deeply value and respect the level of care and depth of caring shown to our loved ones. We know there are residents whose very survival depends on the 24-hour care and dedication of STS staff. Just think how care of this caliber could help some of the 2,000 people being offered little or nothing.
My brother, Duncan, has been at STS since 1964. In recent years my brother, Al Raymond, and I have spoken to most of the staff that have been at STS longest. We have learned how some of his challenges were met and succeeded in bringing Duncan to a more confident and sociable self.
In order to be considered "well informed," we as guardians and family members were asked to keep an open mind about community options when going to visit. How many of those intent on closing down STS and other institutions like it have scheduled appointments and gone to visit – with an open mind – to see how well it is working, its dedicated staff and administration, and even more important, to see how the role of STS can increase and serve ever-growing numbers in the future.
Al Raymond
Rep. Mitch Bolinsky (R-106) has characterized Southbury Training School (STS) as a "less dignified, warehouse-like" setting that offers "fewer opportunities for personal fulfillment and personalized, engaged care." My sister Helen Phillips and I have visited many times since becoming guardians of our brother Duncan, and we emphatically disagree.
Duncan's intellectual disability became apparent at an early age, and he was placed in a privately owned school that had been recommended by our family doctor and other professionals. He lived there for 21 years, but then it closed and forced our mother to look for another school. At the time STS was still open to new admissions, and he entered in March 1964 – 51 years ago – and has lived there ever since.
We know from personal observation that, thanks to STS, he is healthy, happy, and well cared for. He is now 76, deaf, and unable to speak intelligibly to Helen or me, though STS's staff (unlike those at some group homes) has years of training and experience, and no problem communicating with him. We have to wonder how long it would take the staff anywhere else to interact successfully with him, especially as his health needs will inevitably increase in his old age?
STS's staff keeps us informed of developments in his health and everyday life, and through them he has gotten part-time work with Easter Seals; he enjoys it and the sense of accomplishment in a job well done. In addition, he has ample opportunities for recreation and joins other STS residents in trips to the beach and sports events; and despite his disability, he enjoys going to Mass every Sunday. Finally, STS's staff has long encouraged his talent for drawing, and his pictures are exhibited in the art shows held there every October.
Far from disparaging STS as a "warehouse" (thereby falsely implying indifference and neglect), we think it should be hailed as a minimum standard of care for every disabled person. And instead of encouraging the equally false – and contradictory – impression that the funds spent on STS are somehow "spoiling" the remaining residents (compared to the hardships of those on the waiting list), why not reopen it to new admissions and update its facilities, which include a dental clinic and a planned medical clinic, to reduce or even eliminate the number on the waiting list?
Southbury Training School is a priceless and irreplaceable resource whose reckless abandonment would be a tragedy and a disaster for future generations of those unfortunate enough to be disabled through no fault of their own.
Cindy Stramandinoli
I have been involved with both the private and public sector in DDS. I am a parent and advocate. I strongly urge a NO VOTE to closing all ICF facilities in CT.
I agree services need to be provided and choice is important. Our Regional centers especially LFC offer to a small percentage of the DDS population (severe and profoundly disabled) a homelike atmosphere where their needs can be met all in a timely fashion with 24-hour on-site nursing. They go out into the community for recreation, shopping and community events.
Why are congregate settings completely acceptable for the elderly and not the disabled?
Several states are now proposing for their disabled population an assisted living facility. It is privately run, has family involvement and choice of experiences.
Please consider what we are doing.
Southbury has the reputation of the past. I believe several of those placed as a child would not have been there if their parents had birth to three! pretty school and IDEA. They would have remained home with their families.
The issue is the future and how can these parents age gracefully and assist their disabled adult children to a life without them.
Please consider all possibilities before you go down this path. No beds can be filled on our beautiful Campus, through attrition we are down from 72 to 57. Did you know that DDS emergencies are sent with a staff to a hotel until they find placement? Is that at all fair to the client when there are empty beds with well-trained staff that could be used for transition to the Community?
Thank you for your patience. I would invite you at any time to visit lower Fairfield regional center in Norwalk. I would be glad to show you the possible safety net for the future.
_______________________________________
It is not too late to voice your concerns about the closing of STS and state-run I/DD facilities.
Please e-mail the Public Health Committee and urge them to vote "NO" on S.B. 1088.
All Public Hearing Testimony on S.B. 1088 – An Act Concerning Services for Individuals with Intellectual Disability – is posted to the Connecticut General Assembly website.
The following is all testimony presented by supporters of STS at the hearing on March 18 and/or submitted to the Public Health Committee prior to the hearing:
Rita Altman
I am a native of Connecticut whose brother, David Eisgrau, was a resident of Southbury Training School for most of his life. He passed away at age 51 from hepatitis having been an STS resident from the time he was five years old.
David had Down Syndrome, and was profoundly retarded. Caring for him at home became simply impossible. Throughout his life, my parents and I were regular visitors to STS, were close to the staff, and were intimately familiar with his treatment. The only real problem over all of those years occurred when he was relocated to a group home.
The drop off in care was striking, and brought a cry for return to STS from the public as well as the press who were investigating the horrendous conditions. Eventually the state heeded that cry.
I understand and support the movement toward least restrictive, community-based care whenever possible. However, closing STS would be a classic example of “throwing out the baby with the bath water.” There must be an appropriate home for people with profound disabilities where they can be safe. STS provides that environment.
On numerous occasions, my family and I searched for a group home for David. We never found one where we could be confident that he would be adequately cared for and, above all safe.
I implore you to reconsider any movement to close STS. While I know the word “institution” connotes bad things, there are many wonderful institutions in this world as well, and Southbury is certainly one of them.
Judith H. Atwood
I am the co-guardian for my brother, Robert Hirschberg, a resident at Southbury Training School in Cottage 17. I strongly urge you to vote NO on this bill.
As a public school teacher in Connecticut, I am well aware of the prevailing philosophies about the least restrictive environment for individuals with intellectual disabilities. For individuals with less severe retardation, community placement may be the least restrictive and most appropriate. For my brother, whose disability is severe, Southbury Training School is clearly the most appropriate environment compared with community placement.
My brother has been a resident at Southbury Training School for nearly 40 years. The staff at the facility has created programming that maximizes his potential even though he is profoundly retarded with no speech. He has been surrounded by knowledgeable and caring professionals who have allowed him to live a happy and secure life. His medical needs have been met promptly and professionally when needed. My family and I have visited often and have attended many of his PPT meetings.
I visited a community placement home several weeks ago, accompanied by two of the professionals from Southbury Training School. I have several concerns about community placement for my brother.
First, I feel that there is not as much oversight at a community placement as there is at Southbury Training School. Private providers inspect each other, while the state facility is inspected rigorously and continuously.
Second, I do not believe that a community placement can provide my brother with the full program of services he has had at Southbury Training School. The reach and scope of the facility cannot be replicated in a private setting. He has a day program, a work program, a social program, and more.
Last, I have grave concerns about the funding that will be available for community placement. Patrick Johnson Jr.’s recent op-ed in the CT Mirror (March 13, 2015) highlights funding cuts that have been ongoing for many years and how this creates shortfalls for nonprofits that will impact services for people in their care.
In closing, I believe strongly that the collective power of Southbury Training School has produced the best quality of life possible for my profoundly mentally retarded brother, and I hope that you don’t disrupt the only home he’s known as an adult.
Thank you for keeping the best interests of individuals like my brother in mind during your deliberations. Please let me know if I can provide any further information.
Tracy Atwood
I urge you to vote “NO” on S.B. 1088 – An Act Concerning Services for Individuals with Intellectual Disability.
Closing the Southbury Training School (STS), a 1500 person facility, and moving the remaining occupants to already overtaxed group homes, while more than 2000 are on the waiting list, seems counter intuitive. Is this a prudent use of public funds? Has a cost study been done comparing STS vs. community placement for the care of profoundly retarded, elderly persons, many with multiple health issues? How many of those on the waiting list could be accommodated at STS if it was reopened? What are the cost implications of utilizing the full capacity of STS vs. building new community homes?
As a Connecticut taxpayer and the brother of a long-term resident of the STS I encourage the legislature to retain this excellent facility and program.
David Atwood, 61, has been at STS since 1960. He has Down Syndrome and the mental level of a one and a half year old. David is very active and consumes 4000 calories per day. He is thriving at STS where he lives in a ‘cottage like’ subgroup of 4 -6 men of similar mental level.
My sisters and I considered moving David to a group home. We visited four private group homes and four different day programs in Litchfield County. We found one with both an opening and a very dedicated director. Within a month the director left which was a reminder of the staff turnover issue with private sector facilities. We continued with the process to place David in this group home. The STS staff took him there several times, but his high noise and energy level must have been too disruptive. The private agency said they would not accept David.
On behalf of my brother David, I urge you to keep in mind all those whose needs are now being met so well at STS, and for whom a group home setting simply may not work. We have not found, and I doubt we ever will, any arrangement that comes close to the quality of life that David has had at Farm 1 and his current home in Cottage #18.
Staff turnover rates in group homes is higher, on-site availability of skilled nursing staff is less, and outside space that is so important for David is less. It is more efficient to provide specialized care and services to a large group of severely handicapped persons at STS than to the same individuals dispersed in small units throughout the state: one campus with 300 persons rather than 80 four person facilities.
Moving the STS residents, average age 67, to community group homes will not improve the quality of care. A campus setting such as STS is a more cost effective way to deliver the services required for profoundly and severely retarded persons according to the 2003 CCS study and the 2009 CCS update.
Community group homes may be right for some people, but we know from experience they may not work for David. As a Connecticut taxpayer I encourage the Health Committee to vote no on S.B. 1088 and to introduce legislation to open the excellent facilities of STS for the admission of new residents.
Ann Dougherty
I wrote a little poem many years ago. Perhaps, now is a good time to reveal it.
Do not forget this place
For you have known it well
You have watched it challenge the wind
Dispel the fog
Catch the swirling snow in the silence of the night.
You have run its grassy hills
And embraced its autumnal colors
Been sensitive to its expressions
And listened to its feelings
You have forged it and fashioned it
And with unshakable strength
You have encouraged it
To advanced confidently.
Charlie was admitted to Southbury Training School in 1942. His sister Gracie was admitted at the same time. He lived there for 56 years and she for 69. It was their home – their caring, loving, compassionate, and benevolent home. It was a beautiful, safe campus that attended to their every need. Both were born profoundly disabled. I became the guardian when their parents died.
My Brother Michael was admitted to STS in 1948 and lived there for 66 years. Michael was born with marked asphyxiation being self-abusive, extremely destructive and severely disabled.
In the early years there were no group homes. There was no choice. Most of the time family pain was overwhelming. My parents and others devoted their lives to enriching STS. I remember as a youngster, traveling to Hartford to the hearings, the discussions, and the debates to petition for improved care. My father served on the very first Governor’s Council, my mother was appointed to the first human rights committee.
There were no day programs in the early years. We appealed, implored, and solicited the State to improve conditions. Finally, STS became ICF – a lifetime of work and a state of the art facility.
There should be choice. The Training School serves a noble purpose. For the most part, those who remain are non-ambulatory, physically distorted, medically fragile, and elderly. The majority cannot go to work. Some cannot participate in daily activities. Many cannot speak or lie in bed being rolled every hour or two. Numerous residents are in wheel chairs. Respiratory therapy, physical therapy, feeding tubes and frequent medical visits to the clinic dominate daily activity. Still, STS is their loving home.
David came to Southbury in 1953. James was admitted in 1957. Our parents had a common cause and became lifelong friends. When David and James’ parents died, I became their guardian. I visit every week – sometimes several times a week. In the early days my parents and their friends would have discussions about their disabled children, the effects on family members, future care, etc. One particular memory remains in my 72-year old mind to this day. They wished that Gracie, Charlie, Michael, David and Jamie would die before they did – so no one else would have to bear the “burden.” Those comments disturbed me for years. Now I understand what they meant.
Please keep STS open for those who require very specialized, continual medical attention. Include skilled-nursing facilities, enhance the medical and dental programs (more than 500 from the community come to STS for dental care), and provide respite cottages. Perhaps legislators could vote to repurpose or reopen STS for those who would benefit from its services.
I completely understand what “Families Can’t Wait” are going through. I signed their petition. We went through the same – so very many years ago – defending, protecting and safeguarding the disabled.
Thank you for your time and kind consideration in this very important discussion.
Hugo Dwyer
We are here today to discuss SB 1088, a bill proposing closing state operated facilities including the Southbury Training School (STS) and five regional centers over the next five years. This bill would determine the state’s policy on treating the I/DD population for decades into the future.
And that policy is headed in the wrong direction.
Under SB 1088, CT would close all state operated ICF/DD facilities. The State would be abdicating its responsibility for maintaining a vital stake in the social safety net for the I/DD population. It would in effect, entirely privatize the housing and health services for CT’s most vulnerable citizens, giving up CT’s considerable assets forever instead of maintaining them as part of a more comprehensive system. It will be difficult, almost impossible, to turn back once this has been done and a future generation realizes the magnitude of this error.
First of all, there are no funds available to adequately move people from STS or regional centers while addressing the needs of the waiting list.
Currently, it takes one to two years to move an individual from STS to a group home, at a current rate of approximately 40 people per year. By the time this bill were to be enacted, it would more than double that rate, likely putting many of the people moved at risk or putting them into facilities that don’t completely address all of their needs for the sake of meeting an unrealistic and ill-considered deadline.
It would require the building of hundreds of new facilities or refurbishing existing ones. It would require recruiting staff and training to meet the requirements of some of the most profoundly disabled patients in the system. And not all of these homes would be subject to the same standards and levels of inspection and reporting required of existing ICF/IID’s like STS.
Furthermore, each move would require countless hours of planning and supervising for the parents, siblings and guardians of the residents to make sure that everything is in order in the new homes. Many of these parents and guardians are elderly, and many live at a considerable distance from their wards and loved ones. To say this would be costly to the state, and disruptive and upsetting to the families of those involved is a gross understatement.
SB 1088 would divert funds away from the urgent and time-sensitive needs of families on the waiting list, and away from better utilizing CT’s existing assets, and divert them toward changing the residence of people whose needs are already being met and whose families and guardians wish for them to age in place.
Since the 1970’s there was a movement to create smaller group homes for people who should not be living in larger institutions, an idea that has proven to be beneficial to many, but not all members of the I/DD community. At some point in the 1980’s, CT lawmakers took this a step further and cease admissions to state run facilities and to move all of CT’s I/DD citizens to group homes. Now, after 30 years of pursuing this direction, we can see that it has failed. The fact is, per capita costs at facilities like STS have gone up due to the loss of economies of scale, while private operators of group homes generated enough facilities to meet the needs of CT’s I/DD population. The result is that CT still has a waiting list of over 2,000 people, the DDS has under-utilized its assets like STS, and the state’s government has devised no particular way out of this hole except to dig deeper. And that’s exactly what SB 1088 does: it digs us deeper into that same hole.
It’s time to stop digging.
CT needs a comprehensive system of care that includes both state-run and privately operated facilities, tailored to the needs of individuals. These needs change over the course of people’s lives, especially as age and physical illnesses compound their existing disorders. Small homes simply cannot adapt to some of these changes, and that’s why larger facilities are such an important component in a comprehensive, lifelong system of care.
Ideally, people should be able to move to whatever environment best suits their needs. But this is costly. That’s why there must be a complete and inclusive plan for how to use all of the available facilities to their fullest efficiency and effectiveness. While group homes and individual living arrangements are great for those who meet these criteria, there must be good ICF facilities with a wide range of medical, behavioral, and psychiatric services available for those who need them, when they need them. CT has these facilities, but they are not using them to their fullest extent. What’s worse, misguided advocates are writing legislation like this bill in an effort to close them. This must be stopped.
I respectfully ask that you vote NO on SB 1088, and encourage the new Commissioner of the Department of Developmental Services to develop a comprehensive plan for helping all of the intellectually and developmentally disabled people in Connecticut in a manner that best uses all of the resources available and includes long-term planning for developing new ones.
Hugo Dwyer
Thank you for allowing me the opportunity to testify before your committee yesterday in Hartford, regarding Raised Bill 1088. I spoke late in the day, and the remaining members seemed tired (deservedly) and anxious to move things along so they could hear testimony on the next bill. For your convenience and for the benefit of those Committee members unable to attend, here is a summary of my concerns.
1. The committee and its individual members should consider the deeper ramifications of SB 1088 very seriously. Their decision here will determine the state's policy for decades to come. Endorsing the bill will effectively abdicate the state's position of responsibility for providing housing and services for the neediest segment of the social safety net and handing that responsibility to the private sector, where profits become part of the decision making process. Once they give up that position, and their considerable assets like STS and its buildings and grounds, there will be no getting them back, ever. Decades from now, if and when the private providers fail to perform adequately, there will be no way to fix the problem. *
2. In 1986, it was determined that admissions to STS would be closed, that the population there would be allowed to age in place or move to group homes, and that private providers would handle the needs of the I/DD (then mentally retarded) community. The result of this has been that services at STS have become more costly, having lost the economies of scale, while the number of people waiting for services in CT now stands at 2,000 because the private providers have not been able to provide the required services. This plan has not worked as projected.
3. There is no money for this bill. If the State of CT cannot find the money to find a home and a bed for the next person on the waiting list, how can they find money to move 500 people out of STS and the 5 regional centers? And what happens to the people on the waiting list while the state is diverting funds to move people out of STS and group homes for the next 5 years?
4. Alan Bergman, Speaking on behalf of the ARC of CT, claimed that not all of the people moving from STS will need to move into group homes. This is patently incorrect. Most of the people at STS have high levels of needs. Most of them are elderly and are their parents and siblings and guardians are also elderly. They will need homes equipped quite specifically for their needs. These will not be the like most of the existing homes. They will probably cost more to build. Since there are about 500 people that need these homes, and the new recommendation is that homes should have about three people in them, maximum four, there will need to be about 125 -167 homes built to accommodate this move. I ran out of time, but I wanted to also add that I have been told that the average time to transition people from STS to the community has been approx. 18 months, and that about 40 people per year have been moved over recent years. In order to meet this 2020 plan, the state would have to more than double that number of people and cut the transition time in half. That would put many of these people at great risk.
In Georgia, more than 440 individuals with profound disabilities were moved from their facility homes between 2011 and 2013 and two facilities were closed, before very high mortality rates, hospitalizations, injuries, assaults, and elopements resulted in a federally required moratorium on such transitions. According to the state's own reporting, 223 people died. Community developmental disability providers reported 2,456 critical incidents or 72% of all incidents during this report period, including but not limited to mortality. Other "incidents" were hospitalizations, injuries, assaults, and elopements.
5. CT needs a comprehensive system of care that includes both state-run and privately operated facilities, tailored to the needs of individuals. These needs change over the course of people’s lives, especially as age and physical illnesses compound their existing disorders. Small homes simply cannot adapt to some of these changes, and that’s why larger facilities are such an important component in a comprehensive, lifelong system of care. The state must provide the safety net that covers the gaps that will occur in any system run by private, for-profit providers and “non-profit” providers. Such a system is costly. That’s why there must be a complete and inclusive plan for how to use all of the available facilities to their fullest efficiency and effectiveness. While group homes and individual living arrangements are great for those who meet these criteria, there must also be good ICF facilities with a wide range of medical, behavioral, and psychiatric services available for those who need them, when they need them. This is the most critical part of our social safety net. This is the reason we have government and this is what makes us a society and a community. Connecticut has these facilities, but the state is not using them to their fullest extent. A campus like STS could act as a Community Resource Center, providing medical, dental, psychiatric, and behavioral services to the private group homes as well as to the residents of the state facilities, cutting costs. It could provide a Skilled Nursing Facility for elderly I/DD patients, and it could house people in transition, as well as provide temporary respite services for families who have their I/DD son or daughter living at home and need to know that their loved one is cared for if they take a vacation, have their own medical emergencies, or if something happens that requires that they leave the state for a few days. Southbury Training School should be better utilized as part of the comprehensive solution to the problems of the DDS, not sacrificed on the altar of privatization.
I respectfully ask that you vote NO on SB 1088, and encourage the new Commissioner of the Department of Developmental Services to develop a comprehensive plan for helping all of the intellectually and developmentally disabled people in Connecticut in a manner that best uses all of the resources available and includes long-term planning for developing new ones.
Thank you for your consideration,
* When my sister and I went to look for a group home for my brother Tom as a part of our due diligence to investigate alternatives to STS under Messier, we were told that there were no plans to build any homes that were PICA-safe environments, that there were already one or two in the state, but that none of the private providers were interested in building another at that time. PICA is a behavior involving picking up small items and swallowing them. This can cause choking or perforation of internal organs, usually resulting in death or hospitalization depending on where the object is lodged. PICA homes are expensive and require higher staffing and extra training of staff members. Tom and several other residents of STS (I believe there are 8-10 of them) would need PICA safe environments. What happens to people with PICA behaviors when private providers don’t want to build PICA homes?
Martha M. Dwyer
President, Home and School Association of the Southbury Training School, Inc.
Member, Board of Directors of the Southbury Training School Foundation, Inc.,
Guardian of 130 individuals, 60 of whom have been moved, by the Foundation, into group homes.
I urge you to vote “NO” on S.B. 1088...
SERVICES IN THE COMMUNITY
Money - “For almost a quarter of a century the state has depended on private nonprofit organizations to provide services to people with disabilities in Connecticut. This includes services to people with intellectual and developmental disabilities, mental illness and addictions. For over two decades, the average increase to the contracts with these providers has been less than one percent per year . . . Although few nonprofits have gone out of business, a large number are on the brink and many have and will further reduce the number of people they serve.” 1
Quality - “More than 150 media reports in more than 30 states since 1997 reveal systemic concerns in small settings for people with I/DD, including deaths, abuse, neglect, and financial malfeasance. In November 2011, The New York Times that more than 1,200 people with I/DD in the past decade have died in group homes due to “unnatural or unknown causes. . . . U.S. Senator Chris Murphy (D- CT) has called for a U.S. Department of Health and Human Services Office of Inspector General investigation to ‘focus on the prevalence of preventable deaths at privately run group homes across this nation and the widespread privatization of our delivery system.’2 In Georgia, more than 440 individuals with profound disabilities were moved from their facility homes between 2011 and 2013 and two facilities were closed, before very high mortality rates, hospitalizations, injuries, assaults, and elopements resulted in a federally-required moratorium on such transitions. Proponents of deinstitutionalization now recognize that past closures have not resulted in adequately funded community systems, and to adequately fund such systems, i.e., provide people the care they need, will cost at least as much or more than facility-based care:
“It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.” 3
[I]t is reasonable to expect that the cost gap will shrink [or reverse] as people in the community receive more services. This may be especially true because a significant part of the cost gap reflects differences in the wages paid to workers in institutional and community settings.” 4
THE LAW
In 1999, in the Olmsted v. L.C. landmark decision, the Supreme Court expressly cautioned against forced deinstitutionalization, the “termination of institutional settings for persons unable to handle or benefit from community settings.” 5 finding instead that the Americans with Disabilities Act (ADA) only requires community placement when an individual’s treatment professionals determine community placement is appropriate, such placement is not opposed by the individuals, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with disabilities.
Masterful messaging by well-funded organizations and federally funded lawyers wishing, for various reasons, good and bad, to close “institutions” quickly (and incorrectly) characterized Olmstead as a deinstitutionalization mandate.
THE RESULT
We hope that you and all parents, family members and guardians of individuals with I/DD will create a fair and cost-effective means to address the situation in Connecticut .
With a careful analysis of the costs to care for people in the community, assuming fair wages (and the ability of providers to pay fair wages), versus at STS (including an analysis the costs, especially per capita, expanding STS’s services and its population), with proper recognition of the degree and cost of necessary services and the cost to create locations where appropriate care can be provided, plus all of us working together for common goals we can make Connecticut what it once was – one of the states where the best services were provided to the I/DD population.
Hopefully we will not lose an invaluable resource but will instead make uses of it that will benefit many members of one of our most needy populations.
(Footnotes)
1 OP-Ed published in the CT mirror 3/13/13 written by Patrick J. Johnson, Jr., interim executive director of the CT Association of Nonprofits Inc.
2 People as Pendulums: Deinstitutionalization and People with Intellectual and Developmental Disabilities, published in Nonprofit Quarterly, 7/16/14, written by Tamie Hopp VOR Director of Government Relations & Advocacy. Citing “Abused and Used: In State Care, 1,200 Deaths and Few Answers,” New York Times (November 6, 2011) and Murphy, Christopher S., U.S. Senate. Letter to U.S. Department of Health and Human Services Office of Inspector General investigation (March 4, 2013).
3 Samuel R. Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardoza L. Rev. 1, 21 (2012)
4 Id. at 43; compare, Kevin Walsh, et al, Cost Comparisons of Community and Institutional Residential Settings: Historical Review of Selected Research, Mental Retardation, Vol. 41, No. 2: 103-122 (April 2003)(“Findings do not support the unqualified position that community settings are less expensive than are institutions and suggest that staffing issues play a major role in any cost differences that are identified).
5 People as Pendulums, citing Olmstead.
Robert J Gorman Jr.
My sister Ann was born in 1945 and has resided in Southbury Training School since age 4. Ann was born with a “birthing injury” which was caused during her delivery by a forceful use of forceps, which pushed in the back of her skull. This caused a severe brain injury, cerebral palsy and “profound” impairment. She was placed in Southbury when her physician informed my father that taking care of her at home was going to kill my mother. As devastating as it was for my parents to remove Ann from her home they found some relief/comfort in knowing that Southbury was such a highly regarded residential placement. Ann cannot speak; she cannot read or write; she cannot feed herself; she cannot clothe herself; she cannot go to the bathroom on her own. She can only walk/shuffle with significant assistance, which includes a walker to which she is tethered and which requires constant assistance by a helpful person. Ann requires 24-hour care and 24-hour attention. She could not be a more fragile, vulnerable person.
Southbury Training School has been Ann’s home. Its staff is kind, attentive and loving to my sister. One or two of the staff there knit clothing for her on their own time and always ensure that if her rocker requires painting or repair it is done; if she could use a new “country music” CD they get her one; if she seems agitated they know why; if she is happy they know why; if one or two of them to whom she has grown very close walks away from her to get something for her she gets anxious and a little agitated due to this, albeit minor, “separation anxiety”. If Ann has a scratch on her or a bruise on her ankle I receive a call from either the nurse stationed in her cottage, the supervisor of the cottage or even the physician on staff. If she needs to go for testing or any kind of medical care I receive a call from the on-site staff physician. When Ann had cancer surgery several years ago I was consulted by the staff physician who then made sure I was consulted by the surgeon of the hospital. Even though my other sister and I were at the hospital during surgery, Ann was accompanied to the hospital, not just by the transportation staff, but also by a loving staff member who stayed the entire time even though it was her day off.
Most of the staff in Ann’s cottage has been involved in patient/resident care for many years. They are fairly well paid with good benefits, as they are state employees. They clearly are conscientious about the care they give. Care of patients like Ann is demanding and challenging. It is not something anyone can provide. Most of the residents in Ann’s cottage are as vulnerable and fragile as she. If I stop by the cottage without calling in advance, the care and attentiveness I find is the same as if I am there with an appointment – no one has to “dress-up” or change their behavior for a visit. Ann is brought out to an off-site day program most days of the week. There she is surrounded by other individuals, only some of whom are from Southbury. They take her in her wheelchair on frequent outings. Even though Ann is incapable of understanding much around her everyone acknowledges that the change of scenery is good for her. When she returns to Southbury from the “day program” she is cared for by people who know to check to see if she had a good day and is still thriving after the day out. (One staff member actually does not like to see Ann go out for the day as she misses her as one would miss a daughter.)
The thought of privatizing Ann’s 24-hour care is terrifying. Having her care be subject to “market forces” seems unconscionable. I understand that every group home has to be assessed on its own merits, however they are often in a state of flux. They do not have the kind of staffing or the stability in staffing that Southbury does. There is much turnover in staff in many of the homes. Obviously there is a reason for that. One reason is that they do not provide the wages and benefits that the State does. I am personally familiar with experiences of some of the group homes’ employees. I have learned of employees working as a part-time job running a cottage for a shift with one other part-time worker with very little training and when significant difficulties arise they learn that the off-duty head of the cottage has turned off his phone and the supervisor who is supposed to be on-call does not answer the phone. I have learned of physical intimidation as a means of exercising control over vulnerable residents. I have learned of insufficient training and supervision. I have learned of inadequate staffing for very vulnerable residents. Many of the group homes are completely out of the public eye.
I have never learned of any mistreatment of my sister or her fellow residents in her cottages at Southbury. They are under constant scrutiny at STS. If a staff member misses a shift another staff worker works an extra shift; they do not utilize “temp workers”. If my sister were to be mistreated or abused or made to sit in a wet diaper for eight hours she could not help herself, nor could she tell us. When she is at STS she never has to tell us of those things, as they do not happen.
I understand the motivation for “placing” persons with disabilities in a community setting. It is wonderful that some such individuals can be accompanied on a walk downtown or around a mall or a park and interacts with the community, which can become their milieu. Unfortunately that is only a positive option for some. For people such as my sister this is not an option. Her milieu, her family is those in her immediate setting, which is Southbury Training School where she has lived for 65 years. It seems most unfortunate that at this time some people who advocate for persons with disabilities are advocating for the closure of STS. It is so unfortunate that some feel they have to pit the very vulnerable against the extremely vulnerable.
I hope that those who vote on STS’ future will spend meaningful time there to see the care that is provided to the residents. I hope they go and see the bonds that have been so obviously forged between the residents and many of the staff. I wish STS could be opened for more individuals who seem to be very much in need of a residential placement.
I would ask that you not pass a bill calling for the closure of STS. I ask that you not pass S.B. No.1088. I would ask that you respect the residents at STS as people and not as a burden and respect their need to stay in their home with the people who treat them so well. They have been afflicted with a station in life that we would not wish on anyone. I would ask that you at least allow them the comfort and care that comes with staying in their home.
Ruth Hirschberg
My husband and I moved to Connecticut from New York in the late 1970’s so that our son could enter Southbury Training School.
Robert was born in 1960 with profound mental retardation. He is nonverbal and has some very severe behavioral problems at times. We were able to care for him at home until he was nine years old. Then he attended a residential school in upstate New York until he became too old to remain there at age 16.
We searched for alternative private options, and he was turned down at school after school because of the severity of his retardation. Then we began our search for public institutions in New York, New Jersey, and Connecticut. We found that Connecticut’s Southbury Training School was by far the best option. We did a broad three-state search for the best home for our son, and his ability to live at Southbury Training School brought our whole family to Connecticut. My daughter became a public school teacher in Connecticut, and several of my grandchildren have been raised in Connecticut. We moved to Connecticut even though my job was in New York and my husband’s job was in New Jersey. For our family, it was the best decision we ever made.
The care our son has received over these many years at Southbury Training School has been extraordinary. The quality of the staff as well as the care and professionalism of everyone involved in his day-to-day life has allowed him to live the fullest life possible for him.
Our family has visited Robert often, and we have had the opportunity to interact with many of his caregivers. We consistently found that each one of them knew Robert well, could tell us what he had been doing, and showed affection toward him. In addition, we attended many of the quarterly PPT meetings and were able to hear about the complete program that was in place for him. From his day program to his work program to his social programs, Southbury Training School has provided him with a full life.
One of the discussions that have been ongoing for at least 20 years has been the imminent closure of Southbury Training School. We have been counseled about community placement, but we had many concerns as to whether that care could be as complete and comprehensive as the excellent program in place at Southbury Training School. This is the only home Robert has known for nearly 40 years, and we believe the upheaval in his life with a move to community placement will not be in his best interests. In addition, this would be very traumatic for me as his guardian. I am now a widow, aged 89, living in a senior living facility. I strongly urge you not to pass this bill, as it will have negative consequences on many of the residents at Southbury Training School, including my son Robert.
Diana Mennone
My name is Diana Mennone and I am here to speak in opposition to the Raised Bill 1088 to develop a plan for the closure of intermediate care facilities for individuals with intellectual disabilities. My chosen career was as a Special Education teacher at Southbury Training School (STS) for 33+ years, retiring in 2009 and I have continued my involvement with the school and with the Department of Developmental Services. I was appointed by Governor Malloy to the STS Task Force and the STS Board of Trustees, representing the Trustees on the Council on Developmental Services. I also serve as Secretary for the Home and School Association of STS, a non-profit organization dedicated to enriching the lives of the people who live there. My heart belongs to STS and many of the people who live and work there. I am speaking on my behalf but I think I also speak for those elderly parents and the founders of STS who thought their loved ones would live out their lives in the only home they’ve known for decades.
On a more personal note, my brother, Gary has resided at STS since 1977 and I am his co-plenary guardian along with my sister and my elderly mother. Gary has a rare neurological disorder, which has resulted in a multitude of physical, sensory and cognitive challenges. Because he cannot independently move his body, he has a specific re-positioning schedule that limits his time for community trips. As he and many others at STS age, they require and receive more specialized services including highly enriched medical care and even hospice. The well trained, dedicated staff at STS work as a multi-disciplinary team to meet unique and complex levels of need. Some of the long-term direct care and supervisory staff grew up in families where previous generations provided loving care to the individuals at STS. We are all family. Gary and others enjoy life in an individualized home, not a “warehouse.” It sits on a beautiful campus with opportunities for day programs, recreation, music therapy, and integrated community experience. Think of it as an assisted living facility for senior citizens.
The Messier Settlement Agreement (Richard Messier, et al. v. Southbury Training School, et al.) does not require the closure of STS. The Court also assured us as legal guardians that we are the primary decision makers with regard to community placement. Some legal guardians have chosen to move their loved ones to community living arrangements – 40 people are currently pending placement. Yet I and others feel that the behavioral and medical needs of our sons, daughters, aunts, uncles, brothers, sisters, etc. are so extreme that the community homes we’ve visited don’t meet the high level of long-term staffing and on-site medical care.
I applaud the I/DD Caucus legislators who have so passionately gotten involved in understanding and helping the folks of DDS. I look forward to working with Commissioner Murray in seeking other creative ways to decrease the Waiting List and increase services. It just doesn’t make sense to me to displace the remaining aging individuals in ICF certified facilities to replicate costly housing in numerous community living options – all in an unreasonable amount of time. This will add further expenses to an extremely strapped DDS budget and will cause safety concerns and heartache for the individuals and families involved. Much analysis needs to be done first to evaluate and resolve all the unknown complex issues.
Please VOTE NO to S.B. 1088. Be respectful of All people receiving services from dds
Connie O’Connell
I am writing in support of a “NO” vote to the closing of Southbury Training School (reference S.B. 1088 – An Act Concerning Services for Individuals with Intellectual Disability) for two main reasons: 1) Southbury Training School is an important part of a comprehensive program to support our state’s most vulnerable citizens – the intellectually/developmentally challenged and 2) STS CAN be an economically feasible solution if the State of CT will allow STS to accept new residents/clients.
First, as an example of why and how Southbury Training School is so important, let me relate the story of my sister, Christine. Christine became a resident of Southbury Training School at the age of 5 and, for the last 61 years, STS has been both her home and her community. Her level of Intellectual Disability is classified as profound and she requires assistance with ALL of her daily needs. She is paralyzed in her right arm, has a pacemaker, a tracheotomy and a respirator, a g-tube for feeding, suffers seizures and cannot speak. While her health issues re significant, she continues to enjoy a certain quality of life surrounded by professional staff that she knows and trusts. For Christine and others in her similar situation, the level of care that STS offers is ideal and its closure would mean forcing her from the place that has been her home and her community for almost her entire lifetime.
As her guardian, I visit Christine often, meet with the staff and have been impressed by not only the high level of professionalism of the staff but also by their caring attention that they give to my sister. I have visited group homes and I have many concerns about their ability to provide the care that my sister requires. Most importantly, I do not see the same level of “checks and balances” and oversight of staff at the group homes that I see at Southbury Training School. As m sister cannot verbally communicate, I would be very concerned that she could be abused and/or neglected in a group home where there is more limited and less professionally trained staff and where there is less oversight.
The second reason that I support the continuation of STS, as an operating facility is that, as a businessperson, I have heard the argument to close STS based on cost considerations. However, one needs to take a broader look at the numbers to tell the entire story. The current cost of care per STS resident is high and will continue to grow due as the number of current STS residents declines due to death or transfers. Why is this? Apparently, there is a 1986 legislation that prevents STS from accepting new clients. This is absurd, especially when there is a waiting list of over 2,000 individuals in CT that could benefit from STS’s services. A reversal of this legislation would enable STS to accept new residents/clients thereby reducing substantially the cost per client. Moreover, as STS is currently well suited to provide services to an aging population with profound needs and, as the overall general population ages and may need some of the services that TS provides, there may be a good match between STS and many of these aging groups. Therefore, to achieve the maximum economies of scale, the STS model could and should be expanded to accommodate not only the transfer of new residents into STS but also a variety of much needed non-resident client services for this and other needy populations.
Put simply, from an economic “supply and demand” perspective:
Supply:
The State owns the land – over 1,400 acres!
The State owns the buildings
The State has professional staff at STS
Demand:
The approximately 2,000 people on the waiting list is in need of services
The current residents of STS call it their home
In my opinion, the resolution to this issue hinges on the reversal of the 1986 legislation that prevents STS from accepting new clients. Open up STS to new residents and non-residential client services and the economics will make sense. In the meantime, please continue funding for this important and much-needed facility.
Rosemary Petruzzi
I am the guardian for my Aunt, Mary Lucia Petruzzzi, age 69, who currently resides at Southbury Training School (STS). I am the third generation guardian for my aunt to date.
Presently, there are no private facilities in CT equipped to serve the aged and aging population of profoundly and severely disabled I/DD residents as well, or better than STS. Many STS individuals have extremely complicated medical, behavioral and psychiatric issues.
I see this proposed bill as a “David and Goliath” situation where the advocates for the 2020 Campaign, all of which have a great deal of their own political, personal and financial skin in the game, are adamantly “calling” for STS to be closed within 5 years. With the caveat that “we” in the greatest sense of the word, need to respond, quickly to their interpretation of Olmstead and view of what is proper care for our family members. This is insane, and belies a very transparent objective for personal gain. The tables have often been turned on the ones who have needed the compassion of others the most by those who have no true sensibilities.
I simply call for common sense and a sensible long-term vision, which cannot be had by one proposed bill, or one particularly vocal constituent, or advocacy group, or even one administration. One that does not pillage a past generation’s success just to reap the spoils, yet forgetting the lessons, to be relearned all over again. I am calling for true governance that realizes the highest moral convictions and obligations for the state and it’s most vulnerable citizens, and in turn, models and mirrors back that expectation for it’s citizenry.
The Messier Case educated us, the guardians of the wards of STS about community care outside of STS. We for years now, have been apprised of all possible communities, care centers and configurations available to us if we chose to leave. The one thing not present was a clause inferred in the Olmstead Act, and our ICF ranking; that we could look forward to a placement “as good or better than STS for our wards.” That was yet to be found for a variety of reasons, which seemed to mount and promulgate as the years rolled by. Presently, the major concern is the private community placements cannot sustain themselves as viable businesses in this political-economic climate and the clients and their families are suffering greatly. (Patrick Johnson, CT Mirror, Op-ed 3/313/2015).
Add to that medically, behaviorally, and mentally involved I/DD individuals and a health care system in crisis, how do you think this will all add up? At what cost to the state, the families, the I/DD individuals, the communities, and it goes on and on.
My hope is that we can build on our flagship, Southbury Training School, and the success of it’s legacy, the administration, dedicated staff, and the longevity of its residents who, through the evolution of care for I/DD individuals were there to co-create a place of learning, compassion, peace and safety for themselves and their families.
A community grew up around this beautiful campus, to support and love the residents and all the innocence, joy and compassion they hold for us, and the world. These individuals occupy a very special place in this world, a place that is so easily forgotten or exploited by us “normal” people. It is critical we maintain a place, a safe place, where there is true caring, consistent, and accountable, for the innocents, who by no fault of their own, were placed in our midst to remind us of who “we” are.
I am strongly asking you to consider keeping STS a viable, and restored community for the I/DD citizens of CT, to enjoy for a long, long time. We need to truly take care of our most vulnerable citizens. It is unequivocally our moral obligation. Please consider a sensible, comprehensive plan that honors all I/DD individuals, their families and the great legacy we have in our resources both in our people and our capital. It is a matter of wisdom, not money.
I pray, as we move forward together, our decisions reflect our desire to set a precedent of compassionate, transparent, and accountable care not only for our most vulnerable citizens, but as a template moving forward for all our children and families in CT. Wouldn’t that be nice … Please vote “NO” for S.B. 1088.
Helen R. Phillips
I will say "No" again and again to closing Southbury Training School. Why does this seemingly endless debate have to be about only one option and no other?
Why not utilize community group homes AND institutions like STS to more completely serve the wide range of the disabled, as well as others in the community who might benefit from related services?
Those of us who want to see STS stay open and take new admissions already know the facilities, many staff and administrators. We deeply value and respect the level of care and depth of caring shown to our loved ones. We know there are residents whose very survival depends on the 24-hour care and dedication of STS staff. Just think how care of this caliber could help some of the 2,000 people being offered little or nothing.
My brother, Duncan, has been at STS since 1964. In recent years my brother, Al Raymond, and I have spoken to most of the staff that have been at STS longest. We have learned how some of his challenges were met and succeeded in bringing Duncan to a more confident and sociable self.
In order to be considered "well informed," we as guardians and family members were asked to keep an open mind about community options when going to visit. How many of those intent on closing down STS and other institutions like it have scheduled appointments and gone to visit – with an open mind – to see how well it is working, its dedicated staff and administration, and even more important, to see how the role of STS can increase and serve ever-growing numbers in the future.
Al Raymond
Rep. Mitch Bolinsky (R-106) has characterized Southbury Training School (STS) as a "less dignified, warehouse-like" setting that offers "fewer opportunities for personal fulfillment and personalized, engaged care." My sister Helen Phillips and I have visited many times since becoming guardians of our brother Duncan, and we emphatically disagree.
Duncan's intellectual disability became apparent at an early age, and he was placed in a privately owned school that had been recommended by our family doctor and other professionals. He lived there for 21 years, but then it closed and forced our mother to look for another school. At the time STS was still open to new admissions, and he entered in March 1964 – 51 years ago – and has lived there ever since.
We know from personal observation that, thanks to STS, he is healthy, happy, and well cared for. He is now 76, deaf, and unable to speak intelligibly to Helen or me, though STS's staff (unlike those at some group homes) has years of training and experience, and no problem communicating with him. We have to wonder how long it would take the staff anywhere else to interact successfully with him, especially as his health needs will inevitably increase in his old age?
STS's staff keeps us informed of developments in his health and everyday life, and through them he has gotten part-time work with Easter Seals; he enjoys it and the sense of accomplishment in a job well done. In addition, he has ample opportunities for recreation and joins other STS residents in trips to the beach and sports events; and despite his disability, he enjoys going to Mass every Sunday. Finally, STS's staff has long encouraged his talent for drawing, and his pictures are exhibited in the art shows held there every October.
Far from disparaging STS as a "warehouse" (thereby falsely implying indifference and neglect), we think it should be hailed as a minimum standard of care for every disabled person. And instead of encouraging the equally false – and contradictory – impression that the funds spent on STS are somehow "spoiling" the remaining residents (compared to the hardships of those on the waiting list), why not reopen it to new admissions and update its facilities, which include a dental clinic and a planned medical clinic, to reduce or even eliminate the number on the waiting list?
Southbury Training School is a priceless and irreplaceable resource whose reckless abandonment would be a tragedy and a disaster for future generations of those unfortunate enough to be disabled through no fault of their own.
Cindy Stramandinoli
I have been involved with both the private and public sector in DDS. I am a parent and advocate. I strongly urge a NO VOTE to closing all ICF facilities in CT.
I agree services need to be provided and choice is important. Our Regional centers especially LFC offer to a small percentage of the DDS population (severe and profoundly disabled) a homelike atmosphere where their needs can be met all in a timely fashion with 24-hour on-site nursing. They go out into the community for recreation, shopping and community events.
Why are congregate settings completely acceptable for the elderly and not the disabled?
Several states are now proposing for their disabled population an assisted living facility. It is privately run, has family involvement and choice of experiences.
Please consider what we are doing.
Southbury has the reputation of the past. I believe several of those placed as a child would not have been there if their parents had birth to three! pretty school and IDEA. They would have remained home with their families.
The issue is the future and how can these parents age gracefully and assist their disabled adult children to a life without them.
Please consider all possibilities before you go down this path. No beds can be filled on our beautiful Campus, through attrition we are down from 72 to 57. Did you know that DDS emergencies are sent with a staff to a hotel until they find placement? Is that at all fair to the client when there are empty beds with well-trained staff that could be used for transition to the Community?
Thank you for your patience. I would invite you at any time to visit lower Fairfield regional center in Norwalk. I would be glad to show you the possible safety net for the future.
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It is not too late to voice your concerns about the closing of STS and state-run I/DD facilities.
Please e-mail the Public Health Committee and urge them to vote "NO" on S.B. 1088.
All Public Hearing Testimony on S.B. 1088 – An Act Concerning Services for Individuals with Intellectual Disability – is posted to the Connecticut General Assembly website.
