New York State wants to save money for its taxpayers. A laudable desire, but not at the expense of its most vulnerable citizens.
In an Op-Ed for the New York Daily News, Dr. Mitchell Shear and Marcia Shear write about their daughter Samantha, a student at JRC. Her progress from a “bloodied and bruised 80-pound girl once forced to wear arm splints, a neck brace, and helmet” to a happy, smiling, and sunny young woman, is credited by the Shears to the success of Sammy’s program at JRC.
But now the state’s Office for People With Developmental Disabilities has decided people like Samantha Shear who are served at out-of-state facilities must be returned to New York. They claim this will save the state money, but this decision doesn’t take into consideration the needs of the severely disabled person herself.
Read more about the Shears’ struggle to keep Samantha at JRC in the environment that serves her well.
Time does fly when you’re having fun! I have been teaching Physical Education at JRC for almost 28 years. I enjoy working with all our students and clients. They make every day exciting.
The goal of the Physical Education Program at JRC is to motivate our students and clients to develop lifelong patterns of physical activity. We try to help our students and clients understand how important it is to exercise regardless of their abilities. We feel it is important to motivate and encourage all our students and clients, including those with physical and intellectual challenges.
Two students enjoy chatting while walking on the Fitness Room treadmills.
During physical education classes our students are able to work out on a variety of exercise equipment. The students also participate in 30 minutes of exercise per day, indoors in our Fitness Room and full-size gym or, weather permitting, outside on the hiking trails, playground, and basketball court.
In addition, the physical education schedule allows for extra time for students and clients who would like to earn extra gym. Students or clients who may want to work out for the pure joy of exercising can earn extra gym by passing a special contract.
We had a student, DR, who arrived at JRC in September 2013; he weighed 345 pounds and was not able to walk very far without stopping to rest.
With a healthy diet from our outstanding chef and an increase in his exercise, he just weighed in at 215 pounds – a loss of 130 pounds over 8 months!
During his workouts, DR was given many high-fives and pats on the back. He started out walking one minute and taking a break, and slowly increased the time. He can now walk for 20 continuous minutes! We are so proud of him!
Overall, I feel that I have challenged many of my students and clients to lead healthier lives, which makes me proud to be a teacher and contributor to the success of those who have attended JRC.
I have had the pleasure of being a nurse at JRC for 2 1/2 years.
I have worked in many other places such as hospitals and in-patient mental health facilities, and I have never had such a great work experience as I have had here at JRC. Unlike other facilities where I have worked, I feel I have the opportunity to get to know our students and clients and become an active and important part of their lives.
Each day, I look forward to interacting with our students and clients and ensuring their well being in a hands-on fashion instead of just through monitoring of charts, labs, vital signs, etc.
One of the greatest things about being a nurse at JRC is that I have the opportunity to see a student or client’s health and behavior improve as they receive treatment here at JRC.
This bag of psychotropic medications came to JRC with one student who was admitted. All of them were being taken on a constant basis!
One case in particular really stands out in my mind as a testament to this. We had a student come in at 256lbs and on three different psychotropic medications. She also was on oral diabetic medications and high doses of insulin twice daily. In a year she lost 86lbs and has been able to discontinue all of her psych meds and also is off all her diabetic medications. We don’t even need to check her blood sugars anymore!
To have the opportunity to watch the transformation of a student or client who has weaned off medications, and have her personality come out, and her eyes brighten as her body heals and the effects of the medication fade, is truly special.
Due to an outstanding chef, kitchen staff, and physical education departments, we have had the opportunity here at JRC to watch numerous clients and students lose weight and no longer be insulin-dependent and/or medication-dependent diabetics. In a world that is experiencing an obesity epidemic, this is truly an amazing feat.
One of the greatest rewards is not only to see how amazing the clients and students look and feel, but also to be able to speak to the parents and guardians and hear how grateful they are for the changes they see in their children. I greatly enjoy being able to interact and communicate with the parents and guardians of our students and clients, for I feel like this enhances the experience at JRC for the parents and guardians, students and clients, and myself.
At JRC we are a full-functioning nursing department that provides care for our students and clients on a 24 hour-a-day basis. We staff both LPNs and RNs, and we provide medical services in both the school and residences. We have two consulting physicians and also have close partnerships with many local hospitals and specialty offices to ensure our students and clients receive the best healthcare.
Nursing completes medication passes, first aid, sick visits, well checks, immunizations and body checks. Nursing also provides education in hygiene, sexual education, and health promotion. We also provide education to staff as to proper care of our students and clients, Emergency Medication Administration, and medication administration program (MAP) training.
Our goal as the Nursing Department to ensure that our students and clients are receiving the best medical care through a teamwork approach with all other specialties at JRC.
I have been a clinician at JRC for over 20 years. People often ask me how I lasted for so long in such a controversial program. The answer is very simple. I have been a part of a team that has improved the quality of life of so many people. None of the negative comments or ridiculous misrepresentations of JRC has ever outweighed seeing a smile on a face that never smiled, or a “thanks for the help” from someone who entered the program full of anger. I’m in touch with many people who spent time here who we were able to help move on to other settings.
I remember one client, AS, who came to us years ago after 12 years of failed treatment. She spent nine years in 11 different residential or hospital settings in Massachusetts, but was expelled or transferred due to her serious aggressive and self-injurious behaviors. During this period she was treated with 14 medications, Paxil, Benadryl, Ritalin, Desipramine, Dexedrine, Trofranil, Trilafon, Lithium, Clonidine, Depakote, Klonopin, Haldol, Seroquel and Zyprexa in various combinations, without any significant improvement in her behaviors.
In AS’s last Massachusetts placement, she experienced 120 physical and 40 chemical restraints in a 28 week period. When all in-state placements were exhausted (I guess it was felt that JRC was too controversial) she was sent out-of-state where, again, medications and other treatments failed and, after 8 months, she was hospitalized in Boston. She was then finally referred to and accepted to JRC. (I like the fact that we don’t reject anyone because their behaviors are too intense.)
When AS entered JRC she was taking Klonopin, Prozac, Ritalin, Tegretol, Seroquel, Wellbutrin, Naltrexone and Lithium. No wonder she couldn’t control her behaviors! When she arrived at JRC she was in an ambulance and strapped to a gurney – they felt it was the only safe way to transfer her. I found her quite charming with a good sense of humor.
We immediately set up a behavioral program to help her reduce her dangerous behaviors. She did okay for a few days but then became highly assaultive and attempted to injure herself. The honeymoon was over.
Our student’s chart shows her significant behavioral improvement.
Over the next month she had over 1,000 dangerous behaviors and required staff intervention to keep her and others safe. Staff injuries included broken ribs.
Given her extensive history of failed treatment and the fact that her dangerous behaviors were increasing steadily we discussed seeking court authorization for the use of contingent skin shock. She agreed that it was worth a try since nothing else had worked and she yearned for a more normal life. She wanted to live independently in the community someday.
She was appointed an attorney by the Court to represent her and she told her attorney that she wanted to give contingent shock a try. A hearing was held before a Judge in Probate Court who later authorized the use of contingent skin shock.
Success!
The first week AS received 8 contingent skin shocks for aggression and self-injury with 7 on one day. Over the next 52 weeks she received only 3 more. She was completely weaned off of all psychotropic medications and she was thrilled about that.
One of the biggest but immeasurable changes was her attitude. She went from rude and belittling to happy and social. Her self-esteem skyrocketed. The medications over the years had led to a large weight gain and she began to lose weight. She was clearly proud of her progress and actively participated in her educational program.
Due to her success we began to fade out the use of contingent skin shock after six months of treatment without any negative impact. She testified at the Boston State House against a bill to ban this form of treatment, telling the legislators how this treatment gave her back a life. She went out into the community weekly, which was not possible at all for the 12 years before coming to JRC.
AS was completely weaned off the contingent skin shock treatment within the first year and she was working toward her high school diploma. She did have one small set-back and the skin shock was reinstated for a short period, but in general she just continued to improve in all aspects of her life.
Over the course of her stay with us, about 27 months, AS was able to complete her education and receive her high school diploma. She took courses in a local vocational school. She started a paid in-house job in JRC’s Human Resource Department, and later a job at Friendly’s. (When she came to JRC the last place I could see her working was a restaurant where she would have to deal with many different people each day.)
She went out and got her learner’s permit as she prepared to live on her own. When she was ready to leave JRC, she moved to a group home and then later to independent living. She got married, divorced, remarried and had a baby. She trained to become a home health care aide.
I have kept in touch with AS over the many years since she graduated from JRC. Years after she left we asked if she’d like to speak at the State House again about her years of mental health treatment and how she’s done since she left JRC. She agreed to meet me in Boston, and I waited for her at the entrance to a nearby parking garage. I was brought to tears seeing her drive up in her large SUV. She looked like a confident businesswoman going to the office.
AS told the senators and representatives that day, that without JRC she would have died from her self-injury or been jailed due to her assaultive behaviors. To this day I get goose bumps every time I recount the story of first meeting her strapped to a gurney, and her subsequent progression up to seeing her driving into Boston in that large SUV. I still see her smiling face every day, as we have a picture on the wall of her working at Friendly’s.
And this is only one of the dozens and dozens of reasons that I continue to work at JRC.
The JRC clients and students as well as JRC staff are involved in many volunteer and charitable activities throughout the year. The clients and students have hosted many bake sales which have raised several thousand dollars for various charities including the One Fund, a charity created following the Boston Marathon bombings to provide support for victims; to the American Cancer Society’s Making Strides Against Breast Cancer; to the Cystic Fibrosis Foundation; and to the National Marfan Foundation, just to name a few.
The JRC family collects donations and food items for St. Anthony’s Free Market, which provides food to needy residents in Stoughton, where JRC has several homes. In addition, JRC clients and students, with the assistance of JRC staff, collect new, unwrapped toys, which they donate to the U.S. Marine Corps Reserve’s “Toys for Tots” Program.
In addition to their charitable donations, many JRC clients and students volunteer in their communities. Several clients and students have volunteered at the Stoughton St. Anthony’s food pantry as well, where they assisted with unloading the trucks and stocking the freezers and pantry.
It’s fun to help the dogs learn good behaviors too!
Others volunteer at Grace Church, where they currently assist with the remodeling of their new location. The clients and students are cleaning, painting, laying tile, sanding, priming and painting, and building a Café.
Students and clients have volunteered in the past at dog shelters, and are now looking forward to a new volunteer opportunity at the Blue Dog Shelter in Brockton. JRC clients and students will work with the staff on the dogs’ socialization efforts, including walking and exercising, play time, training, and so on.
Let’s offer a BIG hand to all of the clients, students, and staff for their many charitable and volunteer activities! Way to go, JRC family!
The summer of 1981 was extremely sultry. It was so oppressive, outside activities for the students were cancelled much of the time.
The small school building was located in Providence, RI. It housed five or so classrooms with only six students assigned to each one. There were just four group homes in nearby Massachusetts at the time and one that was recently acquired but had not yet opened.
When first admitted to JRC, this little girl had many self-injurious behaviors, including continually slapping her head and pulling her hair out.
That summer there was a waiting list of students who needed the services that only our small school could and would provide, as we accepted children and young adults who had been rejected from as many as five to ten schools due to the severity of their behavior. Parents anxiously waited for an opening, so that their children could be educated without medication. Many had to wait until that fifth house was ready.
One young couple had a little 10-year-old girl who would pull her hair continuously, even pulling it out completely, and slap and bang her head. They arranged to visit and and drove from New York to Providence. Right away they knew that this was the school for their small daughter.
Today that little girl is a lovely young woman who is able to enjoy life, including outings with staff members.
However, in their case, the little girl could not be admitted until their state Department of Education approved the placement. During that long, hot wait, the little girl’s parents would call to inquire about the progress in the state approval. They could only keep her safe by putting her in the family pool as much as possible, they said.
July and August came and went. Finally, they received the approval! Their daughter was admitted September 1, 1981.
Today, this little girl has grown into a lovely young lady who has significantly reduced her self-injurious behaviors through consistent behavioral programming. JRC is still her home, where she enjoys her days with friends and favorite staff members.
Many years ago I was presented with an opportunity to come join the Judge Rotenberg Center family as the resident chef. I have found it to be one of the most challenging and most rewarding times of my career as a chef.
Our menu at the Judge Rotenberg Center is designed primarily around a vegan, plan-based diet. Being tasked with preparing these foods for a largely non-vegan population was a challenge I had never been faced with, but was excited to take on.
I remember one of the first recipes that I tried was a vegan brownie, which was served for dessert one day in my first weeks at JRC. I remember the excitement of the clients in the workshop as I delivered them. I watched from the corner of the room as they happily devoured the brownies, and thought to myself that this is what I need to be doing for them. I need to make these vegan foods as satisfying to the students and clients as I possibly can. I know vegan foods are foreign to most of our population, and are met with some apprehension, but if done well the foods canindeed be very satisfying.
Students happily load their plates at a special luncheon.
I have paid close attention to the feedback of our students and clients over the years, and I do my very best to make them as happy as possible with the meals we serve to them. They have been an instrumental part over the years in helping me build the menu to what it is today. We continue to grow and add new items, while removing any menu items that have become less favored. It is always a work in progress, and we make sure that they are part of that process.
Being in the foodservice and hospitality industry, it is our goal to make sure all who partake in our events or services come away as happy as possible with the food they have eaten. One of the events that I take particular joy in is a special monthly luncheon held for the students and clients. It is a menu of their choosing, and they are very glad to attend. I know that I can make them happy through the foods we prepare and this is one of those occasions where we all have a good time and enjoy.
Beyond my department, I also see the care and love that our staff shows on a daily basis. There is a lot of heart here which I feel isn’t always mentioned in the media but I have seen it firsthand. I have grown very proud of the Judge Rotenberg Center and all that we do for our students and clients.
As the Referrals Director at JRC, I have the opportunity to encounter a number of agencies that deal with a very difficult population of developmentally and emotionally disabled individuals.
These agencies include school districts, psychiatric hospitals, public and private mental health agencies, and criminal courts and affiliated agencies, as well as other service providers. Most often I am visiting these agencies because they have come in contact with a student who has defied other means of treatment or has such difficulties in his or her current setting, that no other program is able to offer educational services.
As all of my colleagues here at JRC do, I stress our ability to effectively educate students without the use of medication, and our willingness to accept even the most difficult students without the threat of expulsion. Often parents and agencies have received assurances from programs that they are able to manage students with severe maladaptive behaviors, only to have the child referred back to the school district or mental health agency that is responsible for ensuring educational and treatment services.
When my colleagues and I meet with agencies and assure them that we are committed to working with the most difficult to treat individuals, we are often met with a fair amount of skepticism. It is gratifying to have the opportunity to work with students who have been expelled or rejected from other programs and see them realize significant progress and achieve goals that they did not think were possible.
JRC student concentrates on her academic work at her classroom computer.
I recall one young lady who was brought before a Family Court Judge in New York City after having been charged with criminal offenses. The Judge felt that due to the adolescent’s criminal behavior and gang activity, she was not worthy of placement in a private school, which was evidenced by her behavior in court. At the time, the young lady refused to properly address the Judge; she refused to remove her feet from the table and would not take her hat off. The Judge was also concerned that the young lady would elope (run away) once admitted to our school, and offend once again in the community. In spite of her reservations, the Judge was convinced to allow the girl to be admitted to our school. However, the Judge did offer a stern warning that the girl was due back in court in several weeks and the court would not be pleased if the girl failed to attend the hearing or committed another criminal offense.
When we returned to court several weeks later for a subsequent appearance, our student was in a much better frame of mind than at her previous appearance. She was genuinely happy and sociable. Her attire and manners were appropriate and she was very cordial. When the Judge met with her, she was astounded at the transformation in this young lady. Our student stood up when the Judge entered the courtroom, addressed the court in a pleasant manner and thanked the Judge for the opportunity to attend school. The Judge was speechless and could only shake her head.
After a minute or so, the Judge asked our student if she was taking medication and our student exclaimed, “No, they don’t make me take medication.” The Judge then asked our student to what she attributed such a drastic change in her behavior and demeanor. Our student explained that she had never been treated with such respect, in spite of some difficult behavior that she was displaying in the first several weeks of her admission to JRC. She told the Judge, “No matter how bad I am, they still treat me well and take good care of me. I really want to get my education.” The Judge looked at me and said, “I don’t know how you people did it, but I can’t argue with the results. I am quite pleased with the progress of this young lady”.
I have been before this Judge since then and her skepticism has disappeared.
The Applied Behavior Analysis (ABA) literature is consistent with regard to the value of thorough and precise assessment of the functions of dangerous/disruptive behaviors. Such assessment (whether experimental functional analysis or descriptive functional behavioral assessment) can help to form the development of a behavior intervention plan that is better tailored to the individual’s clinical needs.
At JRC, assessment of the functions of student problem behaviors is ongoing throughout the student’s JRC enrollment. When the student is first admitted to JRC, a reinforcer preference assessment occurs over the course of the student’s first week. Data are taken regarding which stimuli/events may serve as motivating rewards in the student’s BIP.
Simultaneously, the student’s JRC Clinician begins to collect data, across all environments, on the student’s positive and negative behaviors, as well as related triggers and consequences. Assessment methods include interviews and questionnaires administered to the student, family, and staff; collection and graphing of a broad range of behavioral frequency data 24 hours per day; and direct observation of the student across all natural environments.
JRC’s main video monitoring suite enables views of all JRC spaces.Direct observation, a cornerstone of good ABA, is particularly easy to do at JRC because of JRC’s Digital Video Recording (DVR) system. Most environments (e.g., classrooms, group homes) are equipped with DVR cameras so that JRC Clinicians are able to observe their students’ behavior and related environmental antecedent and consequent events.
JRC’s specialized standard celeration behavior charting system, when combined with the direct observation capability provided by JRC’s DVR system, means that JRC’s Clinical staff are able to conduct ongoing and comprehensive functional assessment throughout the student’s enrollment at JRC. Such ongoing and comprehensive functional assessment is an improvement upon the once-per-year static and narrowly focused functional assessment that sometimes occurs at other settings. For more information regarding JRC’s functional assessment methods, please feel free to reply to this post.
I am both a parent of a child with several emotional and behavioral issues, and an employee of JRC for over 17 years. When I began in 1997 as a Mental Health Assistant (direct care staff), I was amazed at how well-kept the facility and residential homes are. The facility had an “at home atmosphere” for all the students and clients but they are also well-monitored by cameras and staff.
The author with one of her favorite clients.
However, what were most impressive to me were the students and clients. They come in from all around the world to receive our services. Despite all of the negative perceptions and ongoing controversy, we have been very successful in providing our students and clients a better quality of life.
Because my child is also one who needs help, I can sympathize with the parents who struggle day in and day out just hoping to find a place where their child is getting the services they not only need but deserve. As both a parent and an employee, I can see that JRC has been and continues to be that place for our students and clients.
As I continue my employment with JRC, I recognize how privileged I am to be working at the center with so many dedicated professionals, and as I continue to grow older I will cherish all of my memories of the students and clients I have met throughout the years.
