Lynn challenges Michael Feeney, Dir. FLDDSO

April 24, 2012

On April 4^th, 2012, I contacted the Visitors’ Board of the FLDDSO.  I had been referred to them by the Yates County Services Board and decided to because of a concern I had for the relocated individuals from the Middlesex IRA at 6166 South Vine Valley Road in Middlesex.   I wanted to visit them and to make a personal follow-up visit to see how they were doing the best way I knew how.  Specifically, I provided pet therapy activities with my Newfoundland Jake to the individuals of this Group Residential Home up until December 2011, when I was told prior to my usual scheduled monthly visit, that the home would be closing due to necessary upgrades.  I was told that I would not be allowed to speak to the residents about their imminent relocation, and that staff had been told to only make positive comments .  I felt so sad that these individuals, whom I had known for the past years, would be relocated, never to return to their home.  Staff also would be bidding into other locations in order to keep their jobs.

 When I visited the home on December 22^nd, I only saw (3) of the (9) individuals there.  One had already been moved out, but I didn’t know where the others were at the time.  All were quite despondent as was the staff.   All individuals served that day spoke of what they were the most concerned with.  I am changing names to protect their privacy.  Danielle had been told she would not be able to attend her “Workshop” at her Day Treatment Ctr.  She would save her paychecks, sending them to her grandchildren, and she was in tears that this would be possible anymore. She stated she didn’t want to move.  I told her she would make some wonderful new friends, that everyone loved her and she made friends easily.  She asked if I would come with Jake, my Newfoundland, to see her at her new home and I said I would try my best to do just that.  Paul, was very despondent, with his head and shoulders drooping.  He just looked at me with a tear on his cheek.  I asked him if he wanted to hug Jake and Jake allowed him to body hug him for 15 minutes without moving.  He knew Paul was sad.   George came up to me with a smile on his face and slapped a “high-five “ on me, bending over to pet Jake and showed me his huge tower of Duplos that he was balancing. Upon leaving, I gave him a hug and he kissed me on my cheek.  I wished everyone a Merry Christmas and left, sad that there was a possibility I would not be able to see these wonderful people again. 

In January, the community learned of the lack of care and concern the FLDDSO had given legal guardians of Bonita, a resident at the home.  Family had only received verbal notification of Bonita’s proposed relocation home which was over an hour’s drive from Middlesex.  Her sister, Tracey,  was quite upset because it would be very difficult for her to remain as active in her sister’s care as when she lived in Middlesex.   They were told by the house team leader that this was the best option they had for Bonita and they had better take it soon, or it would go away.   Family had not received any consent forms to sign, which were always required for simple dental work or for outings.  They were not advised that they could object to the relocation nor that if the new house didn’t work out, that they could request a change. 

The community became involved because we embraced these people in our midst.  We went to their funerals, they prayed with us at our churches and one was even legally adopted to protect his end of life decisions as he had no legal guardian.  We learned that, after the upgrades were completed to the home, these developmentally disabled individuals, some who had lived in the home for 23 years with staff and housemates they well knew, were being evicted without any option to move back.   We were concerned that if one legal guardian had not been given 30 days written notice of the impending closure, than maybe others had received the same treatment.  We started to learn of their rights and began to make inquiries.

One by one, our friends were relocated to different houses like playing musical chairs.  Each was going through the trauma of relocation….. change,  inconsistencies, new schedules, new staff, and new living quarters.  Some would not be able to attend their day treatment programs where they knew familiar friends and peers. 

By mid – February, all were gone.   Stories of each of their leaving their home at 6166 S. Vine Valley Rd., circulated around.   A neighbor across the road, saw Paul taken from the home, yelling and hanging onto the knees of a woman who had come to transport him.  We heard that George had displayed destructive behavior upon going to his new group home within that first week.  Since George can’t talk, this usually happy man who spent hours arranging newspapers or building Duplo towers and smiling, teasing staff when they approached him , could only express his confusion and feelings by acting out.  Another individual, Pam, arrived at her Day Treatment Program with swollen red eyes, crying, “What am I gunna do without my Roger?” , a housemate that she had built a wonderful relationship with over the years.  She would not be going to her Day Treatment Center anymore.   Roger, kept asking about Pam and where she was.   I was concerned about Melinda who had been at the Middlesex location from its start in 1983.  She was blind and could not hear unless you spoke into her ear loudly.  She knew everyone, her surroundings by touch only.  What was she going to feel that first week?   I became intent on visiting each of them and locating where they were and finding out how they were doing if I possibly could.

As I learned of their addresses, I began to call to introduce myself, and to ask if I could schedule a visit.  Some of the homes I visited,  I was delighted to find that some of my friends seemed happy and settled in.  Staff seemed to know that care and concern was an important piece of the transition in their recent relocation. The biggest concern all relocated individuals seemed to have was missing their housemates and wondering what had happened to them, where they were and how they were doing.  Pam wanted me to tell Roger where she was, not remembering herself the name of the town.  Roger was especially concerned about Pam’s whereabouts and how George was doing.  Some of them saw their old friends during their day treatment programs and that helped.  During my visits, I was able to pass on new stories of how their housemates were doing and assure them of their well-being.

It was when I tried to visit George that things were different.  I met a stone wall and became concerned that either he had hurt himself when he acted out, and that maybe he was not at the home or that he had been medicated  so that his responses to the relocation were not so severe.   When calling George’s home to schedule a visit,  I was initially hung up on twice by different people who answered.  This happened  as soon as I mentioned George’s name.  I then spoke to another staff member, who had great difficulty answering me and then stated she could not divulge any information, after being told to say this by a man’s voice I heard in the background.  She referred me to her house team leader and gave me his number.  I felt that appropriate for her to do and called him.  He stated that I could not visit George because I was not on his list of friends and family.  I asked how anyone could ascertain who was a friend of George’s  as he didn’t talk.  The house team leader simply said,  “then I guess I am declining your offer.”  I asked if George was ok, and was he not allowed to have visitors to which he replied, “I am not saying that, I am just saying you cannot visit.”   I then called FLDDSO and talked to Deputy Director Ms. Sherilyn Coleman-Ferrar to request an understanding of  visiting Policies and Procedures.  She stated that due to my affiliation with the community group advocating for the return of these Group Home residents, that she was concerned that what I found when visiting these individuals would appear in the newspapers or on our SOS-news.com website.  I replied that I would simply like to visit him because I cared, and she stated I would have to become a volunteer.  I stated that I would like to do that  and Ms. Ferrar stated she would start the procedure.  That was on March 30th.  It is now April 23^rd and I have heard or received anything in the mail referencing the volunteer process.

I am afraid  this process could be a lengthy procedure, and if George is hurt or sedated, I will not have the opportunity to find out.  I wonder if his family knows of his well-being and I wonder if he is ok.    George is very active and ambulatory.   A sweet man, and a good sense of humor when happy with his surroundings.

I do not know what we as a community can do, but I am deeply concerned about how these people, the most vulnerable of our society can be ripped away from all they knew as their home….just because the state can and not be allowed to come home once the home is made safe again. 

I learned of a Visitor’s Board which advocates for the developmentally disabled in the Finger Lakes DDSO state-owned residences. I contacted them to alert them to what I was deeply concerned about.  I learned in doing so that there was an open meeting on April 12^th at the Westfall Campus in Brighton.  I attended that open session from 10am until noon.   I was introduced as  community member who had been denied the opportunity to visit these relocated individuals I had come to know over the past 8 years.   I spoke of the story you have just read. I was told that the Visitor’s Board would indeed visit George and make sure all was ok.  I trust that this has been done.   Since I told my story, I have since been denied visits to (3) other of these individuals.   I am concerned what the reason is for these denials.

I am in hope that the Visitors Board will make sure of their well-being. 

Lynn Lersch

Resident of Middlesex/Advocate for prior inhabitants at Middlesex IRA at 6166 S. Vine Valley Rd. , Middlesex NY

 

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