NOTE: PART II WAS ADDED MAY 27. TODAY, PART ONE OF "THE FACT AND SOUL OF THE MATTER" PLE

HELP ME, HELP ROBIN, TO BE ABLE TO DANCE IN THE KIND OF LIFE SHE IS SUPPOSE TO HAVE

JUST LOOK AT THAT SMILE ON MY ROBIN! HELP ME, HELP HER, DANCE IN THE LIFE THAT SHE IS SUPPOSE TO. SHE'S OVER COME SO MANY OF THE OBSTACLES THAT HER DISABILITIES BRING, AND DOESN'T DESERVE TO HAVE CLAIMS OF "FAKE - ATTENTION SEEKING" - OR ANY OTHER KIND OF MANUFACTURED LABELS FROM THE GROUP HOME SHE CALLS "MY HOME", LET ALONE SUSTAIN INJURIES DUE TO MEDICAL NEGLECT. THEY WANT TO "DISCHARGE HER OUT OF HER HOME", RATHER THAN DEAL WITH WHAT THEY HAVE DONE.

PART I: THE FACT AND SOUL OF THE MATTER

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I'm going to try and keep this organized, with as few words as possible. My writing may become a little disjointed as I am still with my husband in the hospital, and write here and there as time allows. I felt that I needed to add this overview today, so you would understand how we got to this disastrous mess.

Robin Lynn had been well served in the group home throughout most of 20 years. Like most developmentally disabled, she is complicated medically, driven by two primary diagnoses - cerebral palsy, but even more so the seizures. As most of us have moved through life we have experienced observation of an actual seizure. We've seen rigidity, tremor, etc. If we know a person who has seizures, most of them are well controlled by drug therapy. Singular drugs controlled Robin Lynn’s seizures - the most desired therapy, until she was about 10 - 12 years old. The varied type of seizures in her life has increased, and the therapy for them changed to a multiple drug approach. Robin Lynn lived with me for over 20 years, and the desperate search to find control of her seizures kept getting more and more complicated. The hardest for an untrained person to identify at a glance is drop seizures. In my layman's description the body loses power, the individual retains consciousness, and the person is usually able to get up without too much delay.

In regards to the cerebral palsy the left leg and arm are constricted. When little, she walked with a limp, and really could go anywhere, do anything, including run. We had surgeries on both the arm and leg, from about 3 years on.

When Robin Lynn entered the group home 20 years ago, her intake included the difficulties of managing her seizures - including the drop seizures. Her structural body was quite mobile. Shortly after she entered the system, her medical records do indicate that a helmet was added for the drop seizures, and they were logged as seizures. About 15 years ago, a Vegas Nerve Stimulator was added to help to stop multiple seizures - rolling seizures, if possible. Not long after her entry into the system, a brace was added for the left leg for stability. Obviously, she has aged, and many adjustments to the braces, and the structure of the braces have changed. Arthritis has settled in both knees, her balance is more precarious, and her gait has changed from striding forward, to almost side-to-side.

A few more notes about the seizures, before I can bring you up to date. From her very earliest seizures forward, Robin was taught to stay down where she was, and if alone, to call out, and notify me, and later she used what she was taught from early on at the group home. From her earliest seizures, I was there everyday from the beginnings, and she was approached with calm, quiet, and reassurance - "you are OK", you are doing a great job handling this," and finally tell me when you feel you can get up." With seizure patients little, or older, someone else often goes to the doctor with you, and serves as the reporter of # of seizures, what happened, what it looked like. Why? In most of the types of seizures, you are not aware enough to know what happened in the moment, how long it lasted, etc. I served as the reporter of seizures for Robin for about 20 years, and doctors along the way trusted me, and we made decisions in the best interests of Robin, and no professional ever questioned whether the incidents reported were seizures, or not.

Over her 20 years in the group home, the day staff in the house experienced steady turn over, not unusual in the industry. We saw at least 7 house directors. There were a few periods along the way where staff would fail to recognize the drop seizures, and they were ironed out, and we moved on. No mention of questionable, or behavioral attention seeking seizures - (fake) really surfaced during the yearly required IEP. I attended every yearly meeting, either in person, or via teleconference. I use to receive the IEP's each year up until about six years ago. Robin Lynn is always present. Behavioral attention seeking falls began being discussed during the 2016 meeting, and I was concerned enough to make statements of dispute, and in fact called the house director, and the neurologist. The house director told me that she herself did not believe that was the case. She further stated that staff person "A", who had been consistently in the house from Robin Lynn's arrival, did not believe that the falls were behavioral. The neurologist told me that some staff reported behavioral attention seeking falls, and other staff did not believe that any of the falls reported by the staff person delivering her to appointments, were behavioral.

In the months preceding the March 2017 annual planning meeting, I became concerned about how Robin was relating her days, including falls. Robin places phone calls to me 3 or 4 times a day. Robin also flies in and visits our home about twice a year. We have had fall free visits, and some with multiples. On one of the visits around this time, Robin had eaten breakfast, and she got up at my request, and we were headed into the bath for her to shower,and dress, we hardly got a few steps, and she began to fall back, I helped her down to the floor, there was rigidity - few tremors, and she tried to roll up to sitting, only to fall back 3 or 4 times. She kept wailing loudly, crying hysterically, shouting don't call "L" (a staff person at the offices of the group home, who works with behavior) repeatedly, crying, "I'll get a bad report". No amount of "your OK", or anything else of what we were use to, stopped the distraught crying. Finally, I got firm saying "Robin Lynn, don't ever let me see that again, I'll always help, but this isn't the way we handle it". Even after she settled down she kept telling me I shouldn't tell "L", she get a bad report. I called the house director reported the incident, and told her Robin seemed frustrated, angry, and upset. As things came up, I made appropriate calls.

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PART II

We left off in Part I with the first information on the 2017 Yearly Planning Meeting. I'm doing my writing in the hospital, at home when I can run in for a few hours, and taking Robin Lynn calls - her several times a day visits. I am also taking lengthy calls from two REAL investigators, regard medical neglect reports, against the group home operator. Right now, I am mentally pulling information from a lot of places, for them, and for you. So we'll step back for a minute, to December 2016. Robin Lynn loves Christmas! She flew to SC in mid-December to celebrate Christmas with our little family. Every year, whether she is here, or we are in CT, Robin shops for her famly - sisters, brother in laws, and nieces and nephews. She truly enjoys herself! On December 24, 2016 I was notified that she had had a fall, seizure, and was transported to the hospital. Staff called me from the hospital once she was settled in emergency, and said that tests were being run. I spoke to a doctor who said she was unsure whether she would send her back, or keep her in hospital. Later, the doctor called and said the immediate seizure situation had been handled, and she hated to keep Robin Lynn in the hospital over Christmas, and was sending her home, with two days of bed rest. On the 25th as I prepared for guests here. My hope was that despite the seizures of the 24th, that Robin could enjoy her day, even from her bed. Gifts are sent to her to open from us, sisters, aunts, etc., all lovingly trying to make her day special. Since she was suppose to be in bed, I didn't ring her room where she might attempt to make a move to pick up her own phone and fall, etc., I called the group home house phone, and spoke to the assistant house director. She was short with me, very unhappy with Robin Lynn, who she said was disrupting her preparations to make a nice Christmas for all the ladies in the house. She went on to say that Robin was sitting at the breakfast table banging her head on the table. She said she would give Robin the phone, and talk to me later. When I tried to speak to Robin she was mumbling, crying, and quite frankly out of it. I kept trying to tell Robin to ask to be taken to bed, and hang up the phone. No one hung that phone up for what seemed like a long time, and the assistant director never called me to tell me what was happening to Robin Lynn. Later in the day, I called the house phone again, and spoke to another staff person, who said Robin Lynn was resting. I asked if she was awake, if the staff could hand her the phone, and let me talk to her. Robin was tired, cried, and upset. I told her as I always do, that the staff cared about her, were taking good care of her, and to just rest. Robin really had no Christmas that day, was too weak to have been out of bed, and in all probability exhibited head drop seizures at the dining room table on the 25th, and was ill treated verbally, and untreated medically. Please remember this incident as we move forward.

There were other falls between Christmas 2016, and the March 2017 disastrous yearly planning meeting. At some points, I spoke about my concerns of the falls to Ms. L, the operator's staff person who establishes behavior plans, particularly about the falls in the morning hours at the house, and the staff using words like "attention seeking" - "when staff is working with another resident", and she "asks other residents to notify staff when she is down", and the one I like best, "she places herself on the floor" My phone calls from Robin Lynn were filled more and more with "they said they'd call "L", and don't tell "L". Additionally she'd say "they say get up, get up now, or I'm going to call "L". "L" said that she had received calls from the group home, and would get stuck in traffic getting to the house, and it might be 40 minutes before she could get to the house, and by then she would find Robin Lynn up, and when she talked to Robin Lynn about the falls, she would smile, or laugh. As her mother, observer of so many of the seizures, drop or otherwise, I will tell you as I later did the 2017 team, that she has laughed and cried inappropriately for forever - she is brain damaged, and has the same problem that brain damaged stroke patients have! Now, back to that last paragraph from PART I. I'm going to copy it, and drop it here.

The reports, I heard during the 2017 annual planning meeting, not provided to me before, or immediately after the meeting were upsetting. We reached the point in the meeting of the behavioral report. "L" wasn't present, but another person read it. I expressed concern about the "behavioral attention seeking falls". The assistant manager of the house said, "even Dr. T (neurologist) said he felt there were behavioral falls." I spoke out about so many things in my distress, and came to the point, with Robin Lynn present that I reminded the group that she was brain damaged. Imagine being put in that position. There came a point in the behavioral report, where it was reported that Robin Lynn was not allowed to participate in a program that is offered above what is provided in her care package of services, but that she pays out of her own extra funds to participate in - the horse program. It is not a horse riding program, but an opportunity to help safely groom a horse, learn about the barns, feeding, maybe give the horse a treat, etc. When you talk to Robin Lynn on the phone on the days she has participated, you know it before she tells you. She loves it. Her voice is happy, delighted, and she is so pleased with what she is able to do. The report went on to say that Robin Lynn was now keeping records of her falls, and she couldn't attend when things improved. This just added to my upset. The conference call ended.

I spoke to the group home site director almost immediately, and was very upset about what was happening to Robin Lynn as it related to the whole fake seizure mess, what it was doing to her permanent individual doctor's records, etc. At some point she suggested that I talk to the group home operator's nurse "K". As we talked I discussed my brain damage comment, and she said that as I was doing that, that the team DDS representative, looked over at Robin Lynn, and she thought noted that she was inappropriately smiling. When I stated my dismay about "L' withholding a program, from a disabled person - Robin Lynn, in punishment, because of her disability, and I found that to be illegal, she stated that after I got off the phone conference, that the DDS representative told the group that they couldn't do that.

That meeting so bothered me that I began to protest in writing (email) to the operator's executive director, housing director, and every person present at the meeting, including the DDS representative. There were at least 4 separate emails over a two week period. The operator's executive director and housing director, NEVER ANSWERED. The DDS representative did. He told me that he had taken my concerns to the DDS nursing unit, and they felt that it was a training issue. He sent me a copy of the DDS Seizure Training, that included drop seizures, what they and other seizures looked like, how to log them, etc. I commented that it was exactly what was needed. He sent the training piece to the operator. One of my unanswered emails included the fact that I had spoken to the neurologist - Dr. "T". I related that I told him that I found him to be greatly responsible for this mess for ever letting an untrained reporter of fact, cause him to make it a fact in her records, when her records from day one had included her varying seizures, including drop. He stated that he never had put in the records that she had fake, or attention seeking seizures. He told me that on one visit that the staff person reported attention seeking seizure activity in front of Robin Lynn, and he repeated exactly what the staff person said, and asked Robin Lynn if that was true, and she said yes. Two people of power over a developmentally disabled person get her to say "yes" to make them happy. Wait until I expose the records later - word for word, of the influence the house assistant director has over Robin Lynn, and confessions, using words she never uses, but matching those of the assistant director, and "L"! It should be noted that the house assistant director is the staff person who drives Robin Lynn to most of these appointments, and serves as the reporter of fact to the doctor. When the house director saw my email she sent me Dr. "T's" most recent report. He had lied to me.

At the end of the two week period, I was upset. I called the operator's administration offices. First, I tried the executive director, and an answering machine came on and the recorder was so full that it couldn't take a message. Next, I went to the housing director's number, and did leave a message. I received a call back on my machine or email, that "TI" from their staff would be in touch with me. "TI", and I made an appointment to have our first telephone meeting. He listened as I expressed my fears as to what had happened to Robin Lynn in the past at the home, my fears for her safety, and the untrue contamination of her medical files, resulting in inappropriate treatment, caused by untrained house staff, and "L". At some point, he told me that he, as in himself, was cleaning up the records. He asked if I would talk to a operator consultant Dr. MA, I agreed, and we had at least two scheduled telephone discussions, where he took me all the way back to when Robin Lynn's first diagnosis of disability was found, right up to current date. During that time, I reminded him that NEVER in the history of Robin Lynn, whether it was early intervention in my home starting at age 10 mos., entry into POHI early school at age 3, grade school thru high school, away camp for two weeks every year, summer day programs for many years, or in her many hospitalizations, HAD ANYONE SAID, "MADELINE, DO YOU THINK, OR WE THINK, SHE MIGHT BE ATTENTION SEEKING"! It should be noted that during that period of time I also allowed DR. MA to meet with Robin.

STAY TUNED FOR PART III OF "THE FACT AND SOUL OF THE MATTER". WATCH FOR THIS PICTURE OF ROBIN AND I, AS I'M GOING TO CONTINUE TO TELL THE STORY, BUT IN A NEW POSTING. PLEASE STAY WITH US, AND KEEP CALLING AND TEXTING. WE NEED YOU AND RIGHT NOW, I'M NEEDED AT THE HOSPITAL FOR MY DENIS.