Home > Uncategorized > DDS appears to look the other way as provider illegally bans guardian from daughter’s group home

DDS appears to look the other way as provider illegally bans guardian from daughter’s group home

Despite a broadly worded state regulation that gives residents of state-funded facilities the right to be visited, a human services provider agency is upholding a directive barring a guardian of a developmentally disabled woman from entering her group home.

Yet, the Department of Developmental Services does not appear to be pushing the provider to rescind its months-long ban.  Instead, the Department appears to have decided to ignore the fact that the ban exists.

The August directive from the provider, Toward Independent Living and Learning, Inc. (TILL), stated in writing that the guardian, Susan Fernstrom, “will not go into the residence” even to bring food or other items to her daughter, Holly. “Anything you need to deliver to the residence must be given to the staff or the manager and they will see that it is properly put away,” the directive stated.

In their most recent exchange about the situation, Susan emailed Jennifer Killeen, DDS area director, on May 4, stating that the ban was restricting her ability to serve as Holly’s guardian. In an email in response to Susan on May 8, however, Killeen did not address that concern or mention the ban.

Instead, Killeen’s email described the TILL directive as simply “calling for coordination and notice of any visits to the home…” As such, Killeen said, the directive was “reasonable and compliant with DDS regulations concerning visitation.” This was exactly the same language used by DDS Regional Director Kelly Lawless in an email to Susan in April regarding the TILL directive.

Killeen had also advised Susan in an email on May 2 to establish “regular discussions with TILL and the DDS Service Coordinator about your concerns.”  But when Susan raised the issue of the ban in a phone call with Dafna Krouk-Gordon, TILL’s president, two days later, she said Krouk-Gordon flatly refused to rescind the ban.

It is abundantly clear that the TILL directive goes further than calling for coordination and notice of visits. It bans Susan outright from entering the home.

We have previously noted that we have heard of no evidence that Susan ever acted in a disruptive way either inside the home or in any other location. It appears that the only reason for TILL’s prohibition against her from entering the home and for a subsequent notice of eviction of Holly is that Susan pointed out deficiencies in the staff’s compliance with Holly’s medically necessary dietary restrictions and with conditions in the residence on a number of occasions.

DDS regulations, which give DDS clients the right to receive visitors, specifically state that family members and guardians shall be permitted private visits “to the maximum extent possible.”

The regulations add that clients and their family members and guardians must be allowed to meet “under circumstances that are conducive to friendships and relationships,” and that the location must be suitable “to confer on a confidential basis.”

Enforcement of the ban raises further questions

Enforcement of the ban on entering the home appears to be up to the discretion of the staff and to Krouk-Gordon. Susan said she was allowed three visits in Holly’s room in April, two of which were used to help Holly pack for an upcoming trip and to try on clothes.

Susan noted that not only was she not allowed in the kitchen in the three instances in which she was admitted to the house since August, she wasn’t even allowed in the living room with Holly. Her visits were confined to Holly’s bedroom. She said she has not been allowed for nearly a year into the basement where Holly keeps seasonal clothes and personal items.

In most instances since last August, Susan has been made to wait outside the house for Holly, even in the dead of winter. She said she has even been made to stand outside the house while signing paperwork involving Holly’s care.

As we have reported, in addition to having an intellectual disability, Holly has a serious genetic metabolic condition called galactosemia, which requires a diet free of galactose, a form of sugar found in milk and cheese. That diet must be strictly adhered in order to avoid complications including brain and kidney damage. Holly must also eat multiple servings of vegetables because she does not metabolize all the nutrients in her food.

Susan has in the past raised concerns that the group home staff was not following her instructions either in buying food for Holly or preparing and serving it to her. Her complaints appear to have led directly to the issuance of the directive banning her from the residence.

Susan said that in the phone call she had with Krouk-Gordon on May 4, Krouk-Gordon declined to discuss Susan’s concerns about Holly’s diet or other issues involving care and conditions in the group home.

Because Susan has only been provided sporadic access to the house since last August, she has been unable since then to determine what Holly is being fed. That has impeded her ability to function effectively as Holly’s guardian and to assure her health and wellbeing.

Krouk-Gordon has not returned phone calls or emails from COFAR for comment on the case.

Susan said said Holly’s dietician at Children’s Hospital had come to the house when Holly moved in, in June 2015, to help management and staff and to also explain why Holly’s diet was so important.

“During Fran’s (the dietician’s) presentation, she stressed to management and staff they should defer to me on Holly’s diet because I knew as much as she did about a galactose-free diet,” Susan wrote to us in an email. She added that she was involved in helping recruit subjects for a first-ever study on adults with galactosemia.

Susan said that to the extent the TILL directive has specified coordination of communication with TILL, the agency hasn’t followed the directive. For instance, Susan said she has not been able to get in contact with the group home’s current nutritionist.

“I’m very worried about what’s going in that house with her food,” Susan said. She said that while Holly is supposed to eat a lot of vegetables, she is concerned, based on Holly’s own reports to her, that she is not getting the food she needs.

During her May 4 phone call with Krouk-Gordon, Susan said Krouk-Gordon also wouldn’t say whether she would rescind the eviction notice for Holly, which she had also issued in apparent violation of DDS regulations. After only a short discussion, Susan said, Krouk-Gordon ended the phone conversation, saying, “‘Your time is up.'”

On April 24, DDS Commissioner Jane Ryder responded to an April 17 email I sent her regarding the TILL ban on entering the residence and a number of Susan’s other concerns. Ryder stated that DDS cannot comment on the specific matters I raised because that would violate client confidentiality. Ryder stated only that, “DDS has been working with the provider and families involved to address any issues and will continue to do so.”

On May 7, I emailed Ryder back, asking whether she could comment generally as to whether providers are permitted to ban guardians from access to residential facilities when there has been no demonstrated disruption of the facilities by those guardians. To date, Ryder has not responded to my query.

Tens of millions of dollars in government funding

As a recipient of state funding, TILL is obligated to comply with state law and DDS regulations.

TILL received $38.6 million in “government grants (contributions)” in Fiscal Year 2017, according to the organization’s IRS 990 form, although the form doesn’t specify which agency or agencies the funding came from. We are assuming the funding is primarily from DDS.

According to the IRS form, Krouk-Gordon received $321,772 in compensation as president of TILL in Fiscal 2017.  Kevin Stock, TILL vice president, received $229,988 in total compensation.

I’ve checked back to Fiscal 2015 so far, and TILL does not appear to have filed the standard online Uniform Financial Report with the state that contractors are supposed to file. That report is supposed to show how much the agencies get in state funding from identified agencies.

I called the state Operational Services Division earlier this month to ask why TILL’s UFR reports don’t appear to contain required information. I haven’t received a call back.

TILL’s financial and business practices have in the past been the subject of controversy.  A January 2002 report by the state auditor stated that TILL, under Krouk-Gordon’s management, had spent more than $4 million in state funds in “unallowable, undocumented, and questionable business activities.” We reported on this in The COFAR Voice in 2005.

In an email to Jennifer Killeen on May 9, which was copied to Commissioner Ryder, I urged DDS “to fully acknowledge the facts and the truth” about TILL’s treatment of Susan and Holly. In particular, I urged DDS to acknowledge the existence of the ban on Susan from entering the group home.

This is an important test for DDS, in our view. If the agency isn’t even willing to acknowledge the clear facts of the cases before it, it cannot effectively carry out its mission of supervising the care of the most vulnerable among us.

Advertisements
  1. janet marcus
    May 14, 2018 at 7:05 pm

    If there was nothing to hide, this would not be going on, Need a lawyer probably for this one.

  2. Anonymous
    May 15, 2018 at 4:47 pm

    Has the provider Human Rights Committee weighed in on this?

  3. May 16, 2018 at 3:37 pm

    Susan noted to us that Richard Santucci, the DDS human rights director, is aware of her situation at TILL, but has done nothing to resolve it.

  4. Monica Brenton
    May 17, 2018 at 1:52 am

    Hello ,

    Let me introduce myself, Monica Brenton, mom and guardian of one of the FIVE residents at the TILL house on 12 Ash Street Danvers.

    It’s about time to set the record straight about the “other side” of this story.
    My daughter moved into this sparking new house with one peer, and TILL had once again, delivered. My daughter is a high functioning 28 year-old gal, who is a TYPE 1 Insulin dependent diabetic. She works, volunteers, attends a day program, but is threatened on a daily basis by her Diabetes.

    This house was conceived by two North Shore families who wanted desperately to have their daughters in a safe environment, work locally, have an accessible town and entertainment, and live as independently as possible.

    The house opened in late January or early February 2015. Starting with 2 residents. The house was the culmination of hard work, months of meetings, possible locations were explored trying to satisfy the needs of a few families from other areas, but thankfully it all came together in Danvers. Kelly Lawless (DDS), Daphna Krouk-Gordon, input from the local DDS office, nursing specialists, and dedicated people from TILL, all made our dream come true.

    Our daughter, Hilary, had lived in another start-up with tentative support from DDS as it was a “pilot” program. After about 18 months, the house was clearly breaching protocol, and abusing funding and putting my daughter’s safety at risk. DDS listened to us, our daughters, and after evaluating the situation pulled their funding without hesitation. We had developed an open communication with the department and trust, which was reciprocated by all involved.

    The two residents were placed in a temporary setting with the Godsend of a location that was temporary. DDS and Kelly Lawless made this happen. She had become very invested in the success of our daughters and walked the walk.

    It took 6 or 7 months for the TILL house to open and our daughters moved in …we all breathed a sigh of relief.

    Six months later, three new young ladies with a variety of diagnosis moved into the house, one being Holly Fernstrom.

    Within several weeks, Holly’s mother Susan phoned me. She seemed upset and asked me what I thought of the house, the staff, the care, etc. Susan seemed extremely anxious about her daughter and we knew that she was also dealing with her husbands’ care.

    Susan asked me many questions and I recall telling her we had had a bad experience with a former house. We were thrilled with the new TILL house. I also asked her if Holly had ever lived apart from her, or gone away to camp, etc. The answer was “no” so I assumed Susan was just anxious i.e.. “separation anxiety”. As mothers of kids with such difficulties and diagnoses, I figured it was just a big transition and things would fall into place for her so she could relax. I also clearly said to her back then:

    “Maybe this isn’t the right placement for your daughter”. That was almost 4 years ago.

    We visit the home on Ash Street nearly every Sunday. I occasionally drop by for needed visits, but have been delighted that Hilary is content in her “own home”, busy, interacting with the other residents, cooking, helping to grocery shop, and happy to do her “chores” to contribute to the household. This is what the best case scenario “living independently” means!

    The staff (who is notoriously underpaid in this field) has been very good, with anyone who wasn’t, being dismissed. There is indeed “turnover” which is typical in this field, with the exception of “house manager” usually the position that is more long term.

    After reading the vicious and slanderous attacks on this blog, meeting with the families of the house, and putting up with Susan’s rants via your blog, we’ve had enough.

    While our current social climate is to drag people through the mud, Susan is a bitter, unhappy person who is trying, at the detriment to her daughter, to pull this house down.

    There are four other families who are not only satisfied with TILL, Daphna, the staff, and the happiness of their daughters. We totally support DDS, the efforts of TILL to satisfy a micromanaging mom, and the staff.

    We have lost several house managers, due to Susan’s relentless behavior.
    Holly used to be a happy young woman, and when we see her lately, she looks depressed.
    We have a small dog named Sally and bring her to Ash street to visit now and then.
    Holly used to sing “Lay Down Sally, Rest Here in My arms…” to Sally. No more. It is heartbreaking to see the negative change in Holly, but easy to understand why it’s happened.

    There are two TPYE 1 Diabetics in the house, and Holly with her health concerns.
    Three our of 5 residents need oversight in illnesses that are life threatening.
    The TILLL nurse assigned to Ash Street is thorough, professional, flexible and does a fantastic job.

    This isn’t about Holly anymore its about Susan.
    TILL has done much to satisfy Susan, even offering other placements.
    Susan cannot relinquish control to micromanage everything about the staff and house, and perhaps should have her daughter move back home.

    Regards,
    Monica G. Brenton

    • May 17, 2018 at 2:19 am

      Monica, I appreciate your input into this discussion. As the author of the blog post, I’m curious about some of your comments.

      First, Susan did note that she was speaking only about her own and her daughter’s experience at the TILL home. She has acknowledged that guardians and family members of the other residents may be happy with the residence, and she has given some reasons for that, which are discussed in the prior blog post. Among those reasons is that most of the other residents, including your daughter, are higher functioning than Holly.

      I’ve tried to report on this matter factually and have tried to back those facts up with documentation where available. What exactly has Susan said — and what have I stated in either of the two posts on this matter — that is slanderous? That is a serious charge to make. What statements has Susan made that are factually untrue?

      Are you aware that Holly has serious medical issues that require a controlled diet? Do you have any knowledge that Susan’s concerns about the food prepared in the residence for Holly are unfounded?

      You have accused Susan of exhibiting “relentless behavior,” which you say has caused the departure of several house managers. Yet you offer no examples of that. What exactly has Susan done in that regard that you have observed?

      You have also accused Susan of making her daughter depressed. What evidence do you have to support that accusation?

      In particular, you have not addressed the key issue raised in these two posts, which is that Susan has been banned from entering the residence in an apparent violation of DDS regulations. How is pointing out the problematic nature of that issue slanderous?

  5. Monica Brenton
    May 17, 2018 at 2:49 am

    To my knowledge, Susan has not been banned.
    She may say that. We are all asked to email or call to let the staff know of our visits.
    That goes for everyone.
    this is not a “DoDropInn” it’s the girls home.

    For four years, Holly’s food has been following her restricted diets.
    My daughter who also has Celiac is a diabetic, with Celiac. she has occasionally taken some of Holly’s food, which she has been reprimanded for and Holly’s food is kept separately.

    Holly also goes out to high end restaurants to ensure the quality of the food is what her mom requests. My daughter doesn’t join as we can’ afford to have the funding pay for food and then dip into her weekly allowance to accompany Holly.

    Susan has caused a huge amount of anxiety for all the residents, staff, and families.
    I don’t need “proof” as it’s very apparent when we visit.
    Holly is miserable. Her mom is making every one miserable.

    And yes, point well taken. If Holly isn’t as high functioning, this is the wrong placement.
    It’s really not about functioning, it’s about happiness with a peer group and keeping her safe.

    If Holly need a huge amount of care that this staff cannot provide, Holly should be in a placement that can satisfy Susan’s needs while sacrificing Holly’s friendships, companions, comfortable environment, and happiness.

    I don’t live there. The whole point of “independent living” with oversight of staff is just that.
    Nothing is perfect, but this house is about as close as it’s going to get to provide a good life for FOUR other young women.

    You ask me for facts and detailed reportage…I’m giving you my point-of-view based on observations.

    So you may think four families are wrong and one person who cannot be satisfied about anything …is correct?

    It’s very sad, and unfortunately Holly is the victim while the mom continues her tantrum.

    In 37 years of TILL running homes, this is the first person who cannot be dealt with in a reasonable fashion. That speaks volumes to me.

    Monica

    • May 17, 2018 at 3:06 am

      Monica, you say that Susan has not been banned from the residence to your knowledge. Have you read the directive that was issued by TILL to her? Are you aware that she has been made to stand outside the house when visiting Holly there? Is that factually inaccurate?

      Neither Susan nor I have stated that other families of the residents aren’t happy with the home. The post is about Susan’s assessment of Holly’s care.

      Again, I have to ask you, what is factually inaccurate that either I or Susan have stated? What have either of us said that is slanderous?

  6. Monica Brenton
    May 17, 2018 at 11:04 am

    David,

    I’m not a detective and no as I mentioned I don’t live at 12 Ash Street. I have seen house managers who do not disclose anything private among families, come and go. I’ve been around the block enough to pick up things and have attended meetings and heard other statements which would back up my comments. I think this blog, which has made public attacks on TILL and Daphna, have done so with incomplete information.

    Everyday, we see the destruction of good people, with accusations that may or may not be true. Call it what you want, I chose “slander” as many of the remarks on this blog are inaccurate.

    This organization is founded on principles and ethics which they try to implement at all times and I find it remarkable that such “facts” by one parent, are taken as Gospel truth.

    If Susan has been asked to wait outside, there must be a history of behavior in the past months which has required that. Keeping a positive atmosphere is a high priority and we support anything that has to be implemented in order to do so.

    And I would not take the liberty to state anything as “fact” until we find out the whole truth.

    Monica

    • Anna Eves
      May 17, 2018 at 1:54 pm

      Hi Monica – we’ve never met in person but we know a lot of the same people. My son Yianni attends day program with your daughter’s boyfriend and his dad has coached Yianni a lot and we hang out at the Gloucester dances. I also know Emily and Christina thru Special Olympics and Yianni’s former housemate who is good friends with them.

      I have seen Hillary many times and have always been so impressed with how she manages her diabetes all on her own testing herself and even giving herself an insulin injection when needed. She always comes to the dances well prepared with her own meal, last month she had her own personal pizza,

      Holly only had a sleeve of saltines to eat, I’m not sure why Holly only had a sleeve of saltines but the contrast was quite stark.

      I am surprised that you, who had a similar experience with inadequate care, would attack another parent for doing exactly what you did which is to speak up and advocate for their child, if Hillary had fallen down and gotten a concussion or her doctor was concerned about her not eating or drinking water or her employer was so alarmed at a raw bacon sandwich she made note of it I would think you would speak up as well.

      And if, because you spoke up, you got an illegal eviction notice from TILL you would probably speak up then too, I know I would. It is quite evident that employees at TILL are talking about this with you which is very inappropriate and I’m not exactly sure what your motivation is here as well – different people can have different experiences in the same group home, not everyone who lived in my son’s former group home was almost killed so does that mean it didn’t happen to him?

      It’s great that you are happy with your daughter’s placement and it gives me hope that TILL is capable of doing the same for Holly. As you know from personal experience none of us go into these situations expecting or wanting conflict – we want our kids to be happy and safe and, as you know from personal experience, when we feel that they are not it is our job to advocate for them and that is what Susan is doing, it’s what you did as well right?

      To blame her for Holly’s state of mind is a stretch as it seems clear to me that this is a point of discussion in the group home and maybe that is why Holly is stressed – perhaps you and the other people in the home should not be discussing these things in front of Holly or with the other girls and maybe like the sleeve of saltines might indicate that Holly is facing a backlash because of her mother’s advocacy?

      A company that has, as you said, been around for so many years should be much more adept at resolving issues with parents without resorting to banning them from entering the home or sending illegal eviction notices or gossiping with other parents.

      • Monica Brenton
        May 18, 2018 at 1:14 am

        Hello Anna,

        Thank you for weighing in and yes, after many many years of oversight my us, school staff, and house staff Hilary is at a point where she can manage her disease with oversight.

        This is accomplished with a two-part formula which Hilary doesn’t comprehend, but has learned to do on her cell phone.

        TYPE 1 Diabetes is a gravely misunderstood disease which is not dealt with simply by giving oneself insulin. There are many factors which have to be considered, and it’s a miracle she can do what she does. That’s thanks to her OCD orgaizational skills which have a downside as well. One must consider food about to be consumed, baseline numbers, exercise, stress, your period, and unpredictable things like infections which make her “insulin resistant

        . I spent years setting my alarm clock to wake at 3 a.m. to check her blood so we wouldn’t be surprised with an extreme low. This has happened several times, under our own care back in the early days. It even happened a few summers ago as Hilary danced away at a wedding reception. Hours later her blood sugar plummeted, she went into seizures, and fortunately the EMT’s appeared in time…This all happened enroute back to Boston from NY at a rest stop off the Merritt Turnpike.

        So, perhaps you saw Hilary with a pizza at the dance as I’ve stressed to the staff the impact of exercise which appears hours later when you think things are going just fine.

        It would seem to me that Holly & her saltines, was an appropriate snack to bring with her;, having eating her specialized diet prior to the dance.

        I’m no authority on Holly’s diet nor do I claim to be, and/or know all the facts about her care at the TILL house on Ash Street.

        I can however, assure you that as families we have met with Daphna to hear of Susan’s dissatisfaction with her daughters’ care. As a mom she is doing her job advocating for Holly, as we are all called to do.

        To my knowledge, no staff, myself or my husband have discussed anything related to Susan’s frustration in or outside the house. I do not “gossip” as it seems you do, and the only reason we are abreast of these problems is that
        Daphna spoke to us about the impact of what is going on with the one resident and was preparing us for the worst case scenario. And its a shame it has come to this.

        You are absolutely correct that I have, as we all do, gone to bat for my daughter when necessary. And when things went down hill at her former house, I advocated to get her out of there. And I acknowledge my mistake in that placement.

        It seems that Holly requires more of a PCA at all times.
        Perhaps Susan, like me, made the wrong choice of homes for her daughter.

        Monica

  7. Susan Fernstrom
    May 17, 2018 at 2:55 pm

    Monica, I don’t even know where to begin, and clearly you are misinformed. If you would like to call me directly to discuss your concerns I’m more than happy to discuss them. I understand your frustration because it’s obvious much of what you are repeating is coming from TILL.

    We don’t know each other, only meeting briefly a couple of times in three years. I would also like to mention you don’t know Holly, not even her last name. Some of your comments and accusations regarding my daughter were very hurtful.

    I want to assure you Holly is not in emotional distress because of her mother and is looking forward to our cruise together in June. I’m sorry for the distress this has caused you, but your daughter manages most of her life on her own. In addition, your daughter can manage her diabetes with insulin to help with sugar levels. Diet is the only form of management for Holly.

    I would like to provide you and our readers with just a few facts in this case. I would also like to mention this has been an incredibly difficult time, and aside from my husband’s recent illness and death the most stressful. Here are a few of the serious issues regarding my daughter’s care, many well documented and acknowledged.

    Holly has lived away from home since she’s been 22 years old, contrary to your belief

    Holly was fed raw bacon and a neglect report was written by her employer

    I’ve been contacted by her employer and friends with concerns about her clothes

    Galactosemia causes brain, kidney and organ damage when the diet isn’t followed

    Holly has repeatedly been given food that is not Galactose-free

    Holly’s food is often not labeled so relief staff have no idea what is safe for her to consume.

    Rotting meat in her lunch drawer

    Holly has gone without food or water repeatedly, and those are just the times I’m aware of

    Holly’s doctor sent Holly home for food before continuing with an appointment because she had not been given any food or water that day, which she documented

    Holly went unconscious during a recent fire drill (doctors believe dehydration could have been the cause), she hit the floor so hard she had a concussion. When Holly regained consciousness she was made to finish the drill. Holly was not taken to the Emergency Room, DDS was not informed, and I was not told until mid-morning the following day. Holly’s injury was significant enough to require a Cat Scan to rule out a slow brain bleed and her eye was purple for weeks

    Numerous problems with Holly’s medication putting her at risk

    Holly is often without basic hygiene supplies

    No help with grooming, Holly has tremors in her hands and cannot shave or clip her nails

    I was recently contacted by one of Holly’s professionals with concerns about problems in the home because Holly asked her to call me

    When Holly moved into the home there were no plans in place to address all the special diets. I put six weeks of menus together complete with recipes and grocery lists to accompany each weekly menu, all of which your daughter has been benefiting from.

    I was instrumental in a nutritionist being hired.

    Since Holly has been living in the home I have always called before visiting. I would also like to mention my visits have never been invasive, once a week sometimes twice.

    Lastly, the women living in the home are not threatened in any way by my visits. During a recent visit your daughter asked me help her put on a necklace, one resident calls me lovey and gave me a big hug while wishing me a Happy Mother’s Day last week, another resident asked me to have lunch with her and her mother and again just last week, and also to phone her mother so she can go to lunch with Holly and I on Thursday, another resident comes into Holly’s room just to chat and looking for my support because she too has a loved one dealing with a serious illness.

    I hope this information sheds some light on the issues and corrects some of the assumptions being made. I’m fighting for the basic care and dignity my daughter deserves something any parent would want for their own loved one.

  8. Susan Fernstrom
    May 17, 2018 at 3:24 pm

    I was issued the ban as a way of containing my knowledge regarding Holly’s food and care. I never discussed these issues with TILL at the home, in fact I raised that issue with DDS because TILL was discussing issues while Holly and the other women were home.

  9. Monica Brenton
    May 18, 2018 at 1:54 am

    Hello Susan,

    You are right, we don’t know each other and I think the world of Holly. She has always been a bright smile in the house. Maybe I’ve caught her on bad days, but I really haven’t seen her the way she used to be. Perhaps I’m misreading things.

    And I don’t recall hearing that she had lived elsewhere for 22 years.
    In fact you called me with worrisome conversation shortly after her moving in. what I remembered. That you were so worried and I figured when you said she hadn’t been away to school, camp, etc. that it was the transition. My mistake, I must have misheard. So please accept my apology. You were concerned back then, nearly 4 years ago, about food, staff, etc. etc. I never heard from you again.

    It’s very difficult to sift through all these “facts” especially when privacy is the rule.
    And I will add that I have never raised any questions nor has any staff ever discussed your or Holly’s business in or out of the house.

    As I just mentioned to your friend Anne, I don’t gossip. I find it does nobody any good and have broken relationships with people who thrive on gossip in any venue.

    I also explained to Anne that TYPE 1 Diabetes isn’t just solved with an insulin dose.
    It’s a very tricky disease with constant trouble shooting and calculating, anticipating the next meal, carb counting, taking into consideration exercise, stress, a female’s period, infections which can make Hilary insulin resistant.

    Handled incorrectly, or just a fluke, a TYPE 1 diabetic can have a huge drop in levels, have seizures, become comatose, and unless someone is there to notice…it can result in a very ugly outcome. Her organs…all of them…will be affected overtime as well as her eyes, feet, and as all TYPE 1 diabetics, susceptible to many other conditions.

    This continues every day, all day, all night, for the rest of her life.
    She has also had her gallbladder removed at 12, wore a Boston Brace for extreme scoliosis for 3 years 18 hours a day, has Celiac, She suffers from OCD, anxiety and deals with quite a bit for a young lady with Down syndrome.

    We all put one foot ahead of the other.

    I am sympathetic to your disappointment you describe but am confused about what I have learned in this blog. Maybe you can clarify.

    1. If Holly lived elsewhere for 22 years, why did she leave the prior placement?

    2. When you looked at 12 Ash Street, did you not notice that is was not a “ranch” construction?

    3. If TILL opted to give up common space, for all the residents, in order to have Holly move downstairs, how would she shower? Would you want her going up and downstairs each day, or expect TILL to redo the powder room to accommodate Holly?

    4. Why has Holly lived there for nearly 4 years with you apparent total dissatisfaction.

    5. It seems as if Holly requires guidance and oversight to the point where an additional staff needs to be hired. Does that mean a 1 on 1 ratio for Holly?

    6. Do you think that is fair (without it being at your expense) to require staff or an additional staff member for Holly, when 4 other residents (2 with TYPE 1 Diabetes) who are very busy, go without that extra attention?

    7. Have you ever considered that perhaps this placement wasn’t the best decision for Holly?

    8. What other “homes” did you consider for Holly, before working with TILL?

    Due to “privacy” and your feelings on this matter, its likely I’ll never understand your
    expectations of a group house.

    I truly am sorry for your frustration and feel badly that this has consumed you in light of loosing your husband and trying to see things through. I just think perhaps you didn’t understand how this house was meant to run.

    Monica

    • May 18, 2018 at 2:54 am

      Monica, You’ve posted several comments to this post so far, and I’ve actually noticed what seems to be a welcome change in your tone regarding Susan’s role in advocating for her daughter.

      In your first comment, you had accused Susan and myself of slander against TILL and alleged that Susan was causing Holly emotional distress and trying to “pull this house down.” I believe you also called Susan “bitter and unhappy,” and said a number of other very hurtful things about her. I can tell you that Susan was quite upset when I talked to her this morning, after she had read your first couple of comments, which were the only ones posted about her at the time.

      However, since this morning, you’ve posted a number of additional comments. In the second to last comment you’ve written so far, you said, “As a mom she (Susan) is doing her job advocating for Holly, as we are all called to do.” You also apologized to her in your most recent comment for misstating Holly’s previous living arrangements.

      You further appear to have acknowledged in your latest comment that you don’t know all the facts of this case.

      While I’m very glad to see the positive change in your tone, I am confused as to why you did include such negative accusations in your earlier comments.

      One other possibly related question I have is what did you mean in that second-to-last comment that Ms. Krouk-Gordon “spoke to us about the impact of what is going on with the one resident and was preparing us for the worst case scenario?” What would that worst-case scenario be, and how would it follow from Susan’s raising concerns about the house?

      • Monica Brenton
        May 18, 2018 at 11:25 am

        David,

        Have you ever been to 12 Ash Street?
        If not, I suggest to take a trip there to see this house.
        It’s like no other that my husband and I have researched.
        After you do that, I’d be happy to tell you why this has been so upsetting to the families.

        We were called to a meeting and not given any personal information, but to warn us that DDS and everyone else in the state has been involved. Were were told that if they couldn’t resolve things with Susan, it can effect all of us and
        that Susan has been offered options and nothing seems to
        improve the situation. We also heard this was the first client in 37 years, who they came to a point where it couldn’t be resolved. Ethical standards were followed at this meeting and always with house staff.

        We we to be kept in the dark?
        .
        We have daughters there too…again five live in this house.

        Hilary lived in a temporary placement where the elderly clients (and Hilary) never left house on beautiful weekend days. When Hilary visited (a diabetic) the planned activity was making ice-cream sundaes. One client walked around holding baby dolls, and a client walked in on her as she showered.

        The kitchen was locked at 9 PM…we had to put a small frig in Hilary’s room for her diabetic snacks. The only form of exercise was to do the ‘WI”? choices on the television.

        Next stop …18 months in a new house we had supported with ok first year and then downhill fast. The nurse who had just graduated thought she knew more about TYPE 1 care than both the nurse educator at MGH, and myself after years of care. Hilary was diagnosed at 9 years old. There was bulling involved when Hilary , who had to be precise about her formula and dosage, (taking too much time) when they wanted to leave the house. The owners dog did his business 3 times that I know of … on her bedroom rug.
        And then we heard more from her housemate…and put the
        picture together that they were not following protocols and abusing DDS funding. DDS pulled the funding after several visits and meetings with the director.

        If you haven’t visited an array of options (and you may well realize) there are dedicated staff, and there are folks who just need a job. This happens constantly in the field of taking care of the elderly, special needs, etc, And in any business there are dedicated people and slackers. The world is imperfect.

        Dafna is one of the dedicated

        When TILL put this house together it was the answer to our prayers. That is why when we hear that the dissatisfaction of one resident’s guardian is threatening four other residents,
        it’s very upsetting and seems very wrong.

        Again please visit the house…and again…perhaps Susan needs to look inward and see if she, under pressure of taking care of her husband, made the wrong choice,

        Monica

  10. Susan Fernstrom
    May 18, 2018 at 12:05 pm

    Hello Monica,
    The care Holly requires is basic care any group home should provide and is well documented in the DDS Regulations. Please feel free to call me with your questions and concerns. I welcome the opportunity to have conversation with you parent to parent.

  11. Monica Brenton
    May 18, 2018 at 11:39 am

    Hello Susan,
    it’s too bad we didn’t continue talking in the beginning. I gave you my phone number along time ago. Had we continued the conversation it would have been beneficial.
    I’d rather not micromanage but trust that things are being taken care of and pick my battles when there are red flags. As moms we just do what we can but after years of advocating and battles, I’m grateful Hilary is in a good home. Thank you for offer. Perhaps after things get resolved.

    • Anna Eves
      May 18, 2018 at 2:59 pm

      Monica – you said this in a prior post “That is why when we hear that the dissatisfaction of one resident’s guardian is threatening four other residents, it’s very upsetting and seems very wrong.” and also that Daphna met with all of you to prepare you for the “worst possible scenario”. What exactly did you mean by those statements? Is Daphna making threats to you and the other families? if she is that is very very wrong and very upsetting and also against the law. I understand that you have been thru alot trying to find a good placement for Hillary – I understand, been there and done that myself in our case it almost cost my son’s life – Daphna cannot just shut a home down in retaliation for Susan’s complaints – it’s actually against the law for her to retaliate against Susan or anyone else because of a complaint. It’s not normal for a group home owner to call a meeting to threaten everyone in the group home when a person makes a complaint – that is not kind professional behavior.

  12. John
    May 18, 2018 at 12:14 pm

    This sure sounds like a COLLUDED effort by Monica, DDS and Till inc to discredit Susan, a concerned Mother who has the courage to be an advocate and stand up for the health and well being of her disabled daughter, Holly. There are many parents who may not speak up about the lack of care that is being given to their loved ones living in “non profit” group homes due to fear of retaliation, being barred from entering the home and also that the Department of Disability Service does not stand behind these family members, only to side with the service providers. Some may also choose to wash their hands of being the caregiver due to the stress and commitment that can be associated with caring for a disabled person. I think that it is time for one brave, local Politician to stand up and do what is right for these disabled citizens and not just talk but, take the action needed. For Monica to pass judgment on Holly’s state of mind and on Susan personally, after “only meeting briefly a couple of times in three years,” is wrong.

  1. No trackbacks yet.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s

%d bloggers like this: