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Why we’re concerned about the DDS waiting list

April 2, 2012

How many people with intellectual disabilities in Connecticut are waiting for services from the state and what is being done to meet that need?

The answers to both of those questions aren’t entirely clear; but based on documents we’ve obtained from the administration and other sources of information, the emerging answers, as we will discuss further below, are disturbing.

Briefly, to the first question, the number waiting for services, including residential placements, may well be in the thousands.  In answer to the second, the administration’s response appears to be shaping up as: ignore the waiting list problem and it will go away. 

We think a reversal of the administration’s course is badly needed.  That’s why we have proposed as a first step that the administration reopen STS to new admissions for the first time in 25 years.

As we note in our op-ed article in The Hartford Courant, allowing new residents into STS would do something real to help solve the waiting list problem by making existing cottages on the campus available to people with severe and profound levels of disability in the state who are waiting for residential services.  This would in turn open up opportunities for community-based residential placements for higher functioning people such as Sarah Peters of Killingworth who is currently facing a wait that could be years for such an opportunity.

Instead, however, the administration appears to be moving as quickly as it can to close STS — a policy direction that will only make the waiting list problem that much worse as the administration places former STS residents in community residences ahead of Sarah Peters and others on the waiting list.

Why the apparent rush to close STS and potentially make the waiting list problem worse?  We think part of the answer lies in an anti-institutional and anti-governmental ideology, promoted by organizations like the Arc of Connecticut.  This ideology has given rise to court battles here and in other states to close state developmental centers.  But as noted above, there may be more going on here.   In Connecticut, the Department of Developmental Services is also talking about reducing state funding for all residential services for the intellectually disabled, both public and private.

First, a word about the unmet demand for residential care in Connecticut.  It’s not easy to get information on the extent of this problem.  The DDS’s’ new five-year plan states as of June 2011, there were 549 individuals waiting for residential services from DDS with an assigned status of “Emergency” or “Priority 1.” Emergency is defined as needing residential services within 30 days and Priority 1 as needing them within a year.

The plan, however, doesn’t make it clear whether there aren’t in fact more people waiting for DDS services in general and more waiting for residential services who aren’t given an Emergency or Priority 1 status.

The plan does note that there were 8,697 people receiving some type of DDS residential support as of June 2011, while more than 15,000 people over the age of 3 were eligible for some type of DDS care.  It seems, based on those numbers alone, that the waiting list could be far larger than 549 people.  Also, the five-year plan contains a statement with no accompanying attribution or explanation that “waiting lists are growing.”

As for the administration’s apparent plans for reducing all residential care, the DDS five-year plan contains the following statement:

For years, the lifespan expectations of families and service providers has been that individuals with intellectual disability would receive early intervention services…special education services…(and) some kind of state or federally-funded day program followed by housing and residential services in a state or federally-funded group home. But that paradigm…must change based on what we know about the state and national landscape. (our emphasis)

If you read this statement carefully, it becomes more and more concerning.  It clearly states that the expectation that the state and federal government will pay for things like residential services and special education is part of a paradigm that must change.   The statement doesn’t just refer to state-operated residential services, it says all residential services are part of this apparently unworkable paradigm.

So, what will replace these residential services that we can apparently no longer expect to receive?

In a number of places, the five-year plan recommends increasing the number of people who “self-direct their services (hire and manage their own staff).”  In other words, families with intellectually disabled people will be given funding to care for those people at home rather than placing them in state or federally funded group homes.  However, we can’t begin to relate to you the number of cases we know of in which this type of home-based care simply doesn’t work.

Even when the five-year plan tries to be reassuring about this potential reduction in residential services, it seems that it only raises the alarm level.  Here’s what the plan offers in terms of reassurance to families concerned that their existing residential options may be taken away:

Experiencing a paradigm shift…does not mean families will be asked to take individuals out of their current residential programs to care for them. It means that the current appropriations are unable to support the current needs of individuals if we don’t look at other less costly options.  Along with many partners, DDS needs to examine better ways to support individuals with less expensive natural, family, and community supports. This doesn’t mean that there will be no future need for residential services. However, some individuals may not need the level of support that they are currently receiving. We are not looking to jeopardize anyone’s health and safety. We only seek to do the most good for the largest number of people within the generous resources allocated by the state (our emphasis).

In sum, based on the DDS five-year plan and the administration’s apparent interest in closing STS as quickly as possible, it is becoming more and more evident to us that the administration doesn’t intend to address the waiting list problem in any substantive way.  In fact, in closing STS and reducing other residential services, the day will come when there will be nothing to wait for.

As we note in our op-ed piece, Connecticut has a serious problem in providing services and places to live for people with intellectual disabilities.  We should be exploring every avenue to solve that problem and stepping outside of rigid ideologies.   We hope the Legislature wakes up to this problem and the administration’s non-approach to dealing with it.
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12 Comments
  1. Syd Stocking permalink

    Re-opening admissions to STS is a very bad choice. It is not the answer. We need to concentrate on funding needs to support our people in the community. I say “our” because I worked at STS for 36 years and they are my family as well as all those in need of services in the community. STS is a place for those that have lived all there life there. It’s what they know and are conditioned to. It would be more upsetting for them to be moved. People in the community can start out with the best if given the chance. We need to convince our goverment to give the resources needed to support those in a normnal setting.

    • Syd, we would agree that we need to support the community system. Re-opening admissions to STS is not incompatible with that. It would relieve the waiting list problem, which is choking the community system right now.

      You say STS is a place for those that have lived all their life there. I assume from your statement that you don’t believe STS should be closed. But blocking new admissions to STS coupled with the administration’s ongoing efforts to move STS residents out of the facility will force its closure sooner rather than later. The only way to save STS as the longtime home of its current residents is to allow new people in.

      Finally, given that you worked at STS, I would think you would appreciate the cottage-based living arrangements and excellent care there as evidence that STS is a normal setting and one that is well integrated with the surrounding community.

      • Syd Stocking permalink

        I agree with the excellent care the clients have received and do not advocate for the forcefull closing. If the Health Department was not mandated to make the expectations impossably high by the Feds STS might have some longevity. The expectations between the Special Master and the Health department conflicted each other in many ways which created a no win situation. I personally tried to satisfy the Health Department because that’s where the money came from. (even though it was funneled into the general budget). I appreciate the cotttage based concept, when I first started working there it had more to offer than a place like Heratige Village. The community was more activily involved than it was when a certain “Marty” took over to try and integrate the then DMR with public relations. All he did was satisfy the rich who had clints in the system down in the lower Fairfield, Ella Grosso area. I have a lot of mixed feelings but still stand by my opinion that opening STS to new admissions is not the solution.

  2. John Doe permalink

    If admission to STS was once again an option it would be full by Sunday. The cottages are no more an institution than Heritage Village, all college campus’, senior housing, assisted living facilities etc. The point is, we should be caring for the people who need care – and if STS is given the opportunity to do that, they will do it with excellence.

  3. Barbara Roberts-Hirsch permalink

    STS should be opened to new admissions. The State has made unbelievable, and impossible promises, to families like mine, to coerce us to move my brother Art into a community setting. Art has all the services he needs, every day, to keep him safe, and well-cared for. A move into the community would force him into the morass of Medicare/Medicaid, which is abominable, at best. I have observed these real life problems, working as a registered nurse in CT. for 40 years. Art has a family at STS, a home, friends, and long-term caregivers who know him so well. Other compromised citizens can, and should, benefit from the well-trained, and experienced staff at STS. Community care is unreliable, at best, with screening at a minimum, and, if the State gets its way, it will dump all State-run, home care programs into private, or for-profit entities, and we know how badly that will affect home and community care….just look at what our Senior Citizens have to endure now. Re-open to admissions. Many people can thrive in a community setting….decrease the waiting lists, but, make provisions for others to be placed at STS, or live out their lives there, like my brother. If the State has their way, Art will be in a group home, who knows where, with strangers, and minimal access to the wonderful level of healthcare he has now. Syd, the option to fund community based programs has been there for years…and it just isn’t happening. It is not cost effective, or it would have been done already. There is an important role for updated places like STS, just as we need assisted-living for seniors. No one placement facility is best for everyone. Yes, move those into group homes who wish to be there, and can thrive in a community setting. But, as for Art, who is well-cared for at STS, let others share that experience as well….we can do both…it doesn’t have to be an either/or solution.

    • Syd Stocking permalink

      I do not advocate for the closing of STS, because of the clients that still live there. That is their home and it has been a great home. I agree with you Barbara that it has been the best place for Art who was one of my best friends when I worked at STS as you know. STS is out dated and the physical plant is falling appart. It would not be cost affective (and a great burden to the tax payers of Connecticut), to try and fix the water, sewer and electrical issues along with updating the buildings that have been closed and deteriorating for years. The community there once worked. I don’t know how to fix a systen that is even taking more and more from our senior population also. I just don’t think opening admissions to an outdated facility is the answer.

  4. Phyllis J. Kuhn permalink

    To all those advocating closing Southbury Training School

    The elephant in the room

    So you think that the mentally challenged individuals would be provided with a rich array of appropriate and beneficial opportunities in a “normal” community? For what? Abuse at the hands of underpaid, underqualified individuals? At Southbury, the staff is highly experienced and paid appropriately. Many have been there for years. They are dedicated to their charges. Not only that, there is careful oversite at Southbury for both the clients and the staff. If someone has even a slight bump, the guardian is immediately called and the person attended to. The staff is under review, as well. This oversite will not be available with off-site placement. These places will be minimally staffed and those individuals minimally paid. When an opportunity for abuse is present, such as the off-site facilities, someone will take it. The only “advantage” to closing Southbury is that those involved in setting up the off-site placement will be able to dig their hands into Federal monies, and misdirect it from its purpose of caring for these mentally challenged individuals into self-serving projects, such as selling the land and turning the facility into condos.

    My brother, Victor, a client of Southbury most of his life, had a whole network of friends, had a job, and was part of the American Society while at Southbury. Brian, my brother was well loved at Southbury. He able to walk the grounds of Southbury safely. He participated in parties, dances, Special Olympics, and his beloved fishing trips. He passed last year and his funeral was so large, sis and I thought that two funerals were taking place at the cemetery, but it was all for Victor.

    If he were in an off-site facility, he would have minimal friends and be isolated. He would probably have been shunned. He would only be able to communicate minimally. He was a “gentle giant”, a three-year-old mind in a 65-year- old body. So you want him “free” in a community? Would you want your three- year- old to have this type of freedom? If a home were next to you for him and others like him, you would probably be the first to say, “Hey, NOT in MY backyard! I don’t want the retards living next to my kids or grandkids”. That is a harsh reality, my friend, and an aspect of this issue no one talks about. It is the elephant in the room. People in a community generally do not want an off-site facility for the physically or mentally challenged next to them. Property value in the adjacent properties decreases. Try to sell your home if the home next to it is a group home of any kind. Neighbors will resent them, especially if the clients are free to walk around. Some clients do not have good boundaries and no sense of possession …this belongs to you and I should not touch it. Some swear inappropriately. These behaviors are tolerated and expected by the staff. No one gets bent out of shape. Believe me, in a community, if anything goes missing or a child abused, they will be the first to be suspected. If a client is swearing or yelling, the police will be at the door, harassing an already stressed out staff.

    Though some communities can make good provision for some challenged individuals, many cannot. This is not one- size- fits all. If people want their loved ones off-site, let them be off-site in the pre-exisiting homes. If the families want them in a more controlled setting with excellent services (including on site medical), give them the opportunity to live at Southbury. Southbury offers a unique blend of the advantages of an institution, ie, on site medical staff with a cottage/condo setting. It is at Southbury where the client can develop to his or her full potential. Close Southbury and you will see homeless mentally deficient people on your streets. Look what happened to Newtown and its clients. Many of the mentally disturbed are on the streets or in prison with no medication. The Newtown facility was closed and its purpose redirected from caring for those with mental health issues to other purposes. That will be the fate of Southbury. Instead of closing its doors, open them to new admissions to all those on the extensive waiting lists for care. Make Southbury a centerpiece to demonstrate what a caring governance and populace can do for the mentally challenged among us.

    Phyllis Kuhn, PhD

    Lake Erie Research Institute

    .

  5. Syd Stocking permalink

    I knew Victor well. I remember when I was just learning the ropes in the cottages after leaving from many years of working in the Recreation dept. I was told I had to strip,wax and buff the floors. I asked where the machine was used to strip and buff the floors and Victor motioned to me he would get it. Well to my amazement he carried this machine that I would have needed help carrying down the stairs and prceeeded to show me how it worked. We were well aquainted for the 34 some odd years I worked there. I agree, Victor would not be happy living somewhere other than STS.

  6. sue permalink

    Syd, thank you for the care you gave to the residents at STS throughout the years. Victor was my uncle. Your memory of him carrying that big machine like it was nothing made me smile. I miss him so much but even more so around the holidays.

    You say you agree that residents like Victor would not be a good candidate for outside facilities and that you think STS is outdated. I agree with you on both accounts.

    But what about the costs associated with placing residents (current or new) in individual group homes? That is a massive undertaking – I cannot even imagine the logistics and administrative costs associated with scheduling round the clock care, supplies, food, transport, rent/leasing, nursing visits, etc. And if the buildings were if owned outright by the state, then there is still the issue of building maintenance and repair.

    Compare that to the cost to upgrade STS outdated facilities – a facility that is already has the land and basic structures in place. It would be far cheaper for the state to upgrade STS rather than take on an entirely new system of placing, maintaining and servicing individual group homes.
    In addition to the money, there is also the human factor – you state that residents like Victor are not a good fit for a group home situation. Then what about all those younger individuals who have not yet placed – those just like Victor age 6 and up – what happens to them? What is their future like? That is what we as family members think about.

    We know STS, not group homes, are the best environment for our relatives like Victor and we know the outdated buildings can be easily repaired or rebuilt. It is not a hardship on the community to update STS. This is a state matter and if the state has enough money to build new jails, then they have enough money to update STS facilities. And if STS is closed down – what do you think it would be replaced with? Could it be a huge housing development or office parks that would bring traffic and congestion to local schools? The community would not be happy about that at all but state and local government are not thinking about STS residents or the community – they think in terms of tax revenue.

  7. sue permalink

    Also, if STS was updated it would bring new jobs to the local community. That’s another win-win.

  8. Barbara Roberts-Hirsch permalink

    First, let me say, that Syd Stocking is one of the most caring, kind people I have ever met, and ultimately, incredible to my brother Art. That Art considered Syd to be one of his best friends, is also noted. This is what is so painful about what is going on now, with our State, and the Training School. Wonderful, devoted caregivers, like Syd, were driven away, and know just how much the State is dragging their feet. It also puts good people at opposites. Syd and I agree about the level of care needed, I believe, because that’s what he advocated for, for Art, when he worked at STS. The “where,” is the question. For years, the Home and School Association, has worked tirelessly, to maintain STS as a reputable, safe home for their loved ones. STS has, by no means, been a perfect place, but, to most of us, with loved ones at STS, it is their home, and has shown tremendous progress. As we know…there is no perfect place. All facilities, state or private, have problems. I applaud other guardians who have felt comfortable making the choice to move their loved one into a community setting….why wouldn’t I? The issue comes down to money, and politics…services/money go where the politicians want them, and where the wealthiest part of our population will benefit the most. The State will only maintain their controlling interest in State-run group homes for so long, and then, those homes will be moved into the private, for-profit sector. The State has already closed a number of facilities, and will continue to do so. STS is upgradable…just look at the beautiful cottages. Infrastructures are being repaired every day…we get reports from the Director, at Home and School meetings. The campus is beautiful, and the town of Southbury has been a good, central community, with easy access to major highways. Scattering our loved ones throughout the State, makes the provision of quality services more difficult, and more costly.The centralization of many services at STS is very cost-effective. Consider transporting Art, during one of his difficult/cycling days, to a medical or dental clinic, where staff are not trained to deal with an elderly compromised man. Add to that, CT. weather…to bundle up these elderly, frail residents, put them into a van. supply a staff member, or two, to accompany them, and transport them, is not cost-effective. Most services, Art receives right in his home. If we centralized services for other DDS residents from Group Homes nearby, that could be cost-effective as well. Why not utilize this facility? Re-open admissions to those families who feel their loved one could be well-cared for at STS. When/if the family feels the need, a move into a community home facility can occur. Meanwhile, families have a choice. Costs will be decreased at STS, because more revenue will be in-coming with a larger population. Take advantage of centralized services; professionals and staff, well-trained to work with some very compromised clients. When I was in Nursing School in WTBY., student nurses trained at STS. STS could make training available for other professionals who don’t have access to oppportunities to learn about people with these problems. Lastly, much of the staff at STS are long-term employees, as Syd was. Some of the staff caring for Art ,have known him over twenty years. These are not long-term lazy people looking for an easy-state job. These are incredibly dedicated, hard-working, loving people, and, treat my brother, and my family, as if we were their family. They teach new staff members about Art, and his idioscyncrasies.They help with transitions, and make Art as comfortable, and happy as he can be. We can pop in at any time, unannounced, and find him clean, neat, and with someone sitting with him, guarding his every movement, to keep him safe. There are options….let’s see how we can make the system work well for all. Thank you.

  9. Amanda Grylls permalink

    Oh dear God please someone help my Grandmother and my Uncle.
    My Grandmother 89y, has lived for her baby boy, Billy 47y. Uncle Billy has Downs S. and early Dimentia.
    He was hospitalized a month ago after having a seizure. A new medication he had taken lists seizures as a side effect.
    My grandmother wants her son home but DDS is insisting that Uncle Billy gets placed in a group home and the thought tears her to peices. Grandma has been perscribed Zoloft and Kolonopin to keep her from getting too upset but having to sneak away from her baby’s side every night in hopes he wont upset the staff with his desire to go home cannot be suppressed. If Uncle Billy gets upset then the hospital staff will only give him a needle and then he will be asleep all day.

    He is slowly losing his abilities BC of being in the
    hispital.
    Last Tues, Grandma and I went to bring him home as per a particular doctor but he was so medicated that we couldnt wake him until about 4pm. He couldnt walk without help and the
    next day he had pneumonia.
    Then on Thursday, the DDS worker went to court and had an ordered conservator appointed.
    My Grandnother is the mind and Billy is her heart. They are a unit and seperating them wont be good for either of them. Grandma knows what Billy wants when nobody can understand him but just like at the hispital, in a group home his needs abd wants will be neglected and he will probably be medicated when all he needs is his Momma.
    DDS said that if we can provide 24h care than and inky then will they allow him home but they will not help with the financing of such staffing.
    Please email me with any info, names, numbers. We go to court against the state DDS on Tues.

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