September 2016





The LABBB Collaborative
Newsletter

Sharing best practices for promoting inclusive opportunities for students with special needs     
  
In This Issue
Message from the Executive Director
Patric Barbieri

The Reality and Brutally Honest Truth about Special Needs Planning
 
Part I
 
What I Learned and What You Need to Know
 
It was always understood by our family that I would be my sister's guardian when something happened to my parents. It was always in the back of my mind - a mere conceptual thought - but we never had a formal discussion about it. "Yes, of course, I will be the guardian," I would say to my parents, but I figured this would be much further into the future. What we didn't expect was that both my parents would pass away within five months of each other this past year. My sister has Down syndrome and turned 40 years old over the summer. Our lives were about to change significantly.
 
If you want to learn about the reality of special needs planning, this article is for you. There will be no fluff, just the facts, the brutally honest truth of what I learned, and the mistakes our family made. Let me start by saying that developing a "special needs trust" is not the planning I am speaking of. Interestingly, this is the first thing I was curious about, because I had heard of the importance of developing one. Well, forget that. A financial trust is but a small item in a long list of planning considerations and decisions that need to be made. It is necessary, but you should certainly not think that it is a priority in any way, shape, or form. The real planning is starting the discussion with family members who will be taking care of your son or daughter in the future, what role the siblings will play, what they will need to know, and what decisions they will need to make.
 
This is a personal story that illustrates the reality of special needs planning. When will you need to confront these facts? It could be in 10, 20, or 40 years, but eventually, the time will come, and someone will need to be responsible for the care of your son or daughter when you cannot do it any longer. Siblings play the most significant part in this planning, and it is essential that they have the knowledge, information, and understanding regarding what this will entail. To parents and siblings, I implore you to start planning now. We made the mistake as a family of not doing this. Siblings, your lives will change when you take over the responsibilities. My hope is that by the time you finish reading this article, your family will be motivated to start a discussion and start planning as if it were a 50-year plan. Believe me, it will be a lot easier in the future if you do this now.
 
In 1978, I was 14 years old and was attending a sibling support group at the Shriver Center in Waltham. It was the first sibling group facilitated by the Shriver Center. If you would like to read the Shriver Spotlight Magazine "Siblings" article they did with me, click here: Sibling Support Network Edition, on page 3. My mother wanted my brother, sister, and me to understand what we were going to be experiencing with a sister who has special needs. She wanted us to connect with other peers who had siblings with special needs. This was a good start.
 
About nine months ago, and at 52 years old, I started the process of acquiring guardianship of my sister, who just turned 40. I was very involved in her life, but I never realized the amount of work my parents were doing to take care of her! It was simply amazing. As parents and guardians, you know this all too well, and you are still trying to figure it out. But who is going to take all this on after you? You will not be here forever, and you never know what can happen, so planning needs to happen sooner rather than later. Think about all the hours, days, and years you have been working on the care of your child with special needs. Not many people can understand how much work this involves unless they have been through it.
 
At my mother's funeral services, William, my sister's housemate, approached me to offer his condolences. I thanked William for coming and he responded, "Of course, we are a family, and we support one another!" When you hear something like that, you know my sister is in the right place. Her group home is her sanctuary, her support, and the place where she wanted to be during this difficult time. We asked her, "Why don't you come live with us for a while?" and she said, "Absolutely not. This is my home; this is where I want to be." We are fortunate in that we have family members who all help out with the care of my sister. She has been living in a group home for the past seven years, and although this is not an article about housing, I don't know how we would have survived if my sister had been living with my parents at the time they passed away.
 
My sister has a part-time job at T.J. Maxx, attends her community day support center on the days that she does not work, and has a wonderful social life. We have an ideal situation. You would think everything is taken care of, so what do we have to worry about?
 
My parents didn't want to burden us with everything that was involved in the care of my sister, and perhaps, for them, it was just something they did for so many years that it became routine and they were planning on sharing it at some point. As a family, the mistake we made was not starting the conversation sooner. The planning and sharing of the details of my sister's life should have been a gradual process, and when the time came, we would have had all the knowledge of what was going on in her life. But we just don't think about this because we always believe we have plenty of time in which to do it.
 
Part II
 
When Do You Get Siblings, Caretakers Involved?
 
The siblings of your son or daughter with special needs are probably much too young to get involved at this time, but this will get you thinking about the future. Sibling groups may be a good way to get started. It doesn't have to be a sibling; it could be an aunt, uncle, or another person whom you see taking on this role in the future.
 
Unfortunately, my parents passed away within a short period of time before they shared these responsibilities; we did not have a transition. If we had started this planning and had known where all the information was kept, it would have been significantly less stressful. My parents were organized, but the information was all in their heads. We are still digging to find important information that we will need in the future, from medical records to paperwork (the paperwork is never ending), medications, case workers, and many more items I can't even remember, but am still trying to gather.
 
How were we supposed to know that the Mass Health application was overdue? We didn't know you needed to apply for this each year! Who is taking care of this? This is just one example of something that needed to be done that we did not know about. This created significant stress for my brother and sister. We were all trying very hard, but even with three of us, and our spouses, it was overwhelming. We worked very closely together, but it was frustrating because we were also dealing with our own families, jobs, and responsibilities; we were forgetting to follow up on items; and we didn't know who was doing what. Everything became a last-minute rush to get it done because we were just finding out about it.
 
We needed to find my sister's contacts, including doctors and case workers, and her medications, among many other things. We were running all over the place trying to piece it all together. When we went to the pharmacist, they could not refill her medication. Why? They said that we needed to call her doctor to get it refilled. Which doctor? Once we got in touch with the doctor, they required us to set up an appointment before they would refill it. Her doctors were located anywhere from Lexington to Boston. My parents were retired and had plenty of time to drive into Boston for medical appointments.
 
My sister had a different doctor for each medication she was taking; therefore, we were trying to find names and numbers for six doctors: 1. Primary physician, 2. CPAP machine, 3. podiatrist, 4. dermatologist, 5. diet manager, and 6. dentist. At the time, there was an ongoing issue with all of these specialists, and we needed to bring her to each of them immediately. We didn't have any information about where they were all located or any baseline data; it was all in my mom's head.
 
Shortly before my mom passing away, I called my sister's counselor to check in and let her know about our situation. The counselor stated that she was moving and was ending her services at the end of the month. My sister's DDS case worker was excellent, and he immediately contacted me to offer support, but he said he was retiring in one month. My sister's SSI checks stopped being deposited, and we needed to go through the process of implementing a new payee for her account before they would issue the checks. I did not even know what a payee was. No one told us that when the current payee,  who, in this case, was my mom, passed away, the SSI checks stop immediately. How can all this happen at the same time ?

Part III

Responsibilities and Solving Problems
 
This was the beginning of a list of problems as siblings and guardians that we would need to figure out on our own. These were the problems we needed to solve both in the short term and the long term. For parents expecting their siblings to take over responsibilities, it is much more complicated than just assuming that they can do it on their own. Even if you have all the information in one place, just the paperwork, doctors' appointments, and coordinating transportation can be overwhelming.
 
If your child is not living in a group home, have you planned for this? Who is your child going to live with if something happens to you? Are you thinking, "We have plenty of time to worry about this?" These questions can be paralyzing for a family, as you cannot even begin to think about the items you will be responsible for if you haven't started this discussion.
  • Group home meetings: Attend four times a year.
  • Doctors' appointments: Who arranges this and gets all the details? We put together a Google calendar of all yearly appointments. Who will drive them there and get all the details?
  • Medications: Who will be responsible for making sure they get refilled every month?
  • Mass Health forms: This needs to be done every year.
  • Mass Health dental coverage: This plan has limited dentists. My sister and my parents went to the BU Dental Center. It would be impossible, for us as siblings, to bring her in to Boston for dental appointments. I looked around for dentists, and most do not take Mass Health. We need a dentist who is local to her community. Many parents have their son or daughter on their insurance.
  • Allowance: My sister needs someone to take money out of her account and make out weekly envelopes for allowance every month. For special events, she needs additional monies dropped off at her house.
  • Phone management minutes: She needs minutes refilled every two months. There is always a problem with her phone. There is a plan that can give her free minutes, but the work to get it implemented is just not worth the time and aggravation.
  • Managing her weight: This is an issue that we need to watch constantly.
  • Going to house parties: We need to be involved, be engaged, and be a part of her community. We need to be present at her house gatherings and parties.
  • Special Needs Trust: This is an easy one, but you need to know how it works and who is responsible for it.
  • Karate: My sister has been taking karate for 20 years. Who is going to take her and arrange transportation?
  • Special Olympics: She competes in bocce and goes to practice every week when they are getting ready to complete. How does she get to practice and events?
  • Who is the payee for her bank account?: This person needs to monitor monies that come in from SSI and go toward her group home fees and her living expenses.
  • SSI payment reconciliation: Who will be responsible for doing this every year? Technically, the payee will need to report how the funds were spent.
  • Bank account: Who is going to check it every month so it does not go over $1,800 as per the SSI regulations?
  • Group home cleanup: Her group home closes for two weeks two times per year for cleanup. Who is she going to stay with during this time?
  • The Ride: This is a very good option for transportation, but you need to monitor them. We set this up for my sister to go to karate, but they were constantly showing up late and she was arriving 30 minutes late to the class, or sometimes they would drop her off an hour early! This did not work. We ended up driving her, and then we arranged transportation for her to and from karate with a parent from another group home. We were lucky this parent offered this.
  • Safety, safety, safety: This is the biggest fear. I didn't worry about this until I took guardianship. I didn't think much of it; my parents did. We constantly talk to my sister about what she needs to do. I still hear from parents whose son or daughter graduated from LABBB and what they are experiencing, and safety is always a concern. There is too much to discuss in this article, but the same elements, such as bullying and harassment, which we discuss in school are going to occur, and I have had to intervene on a few issues already that have happened over social media. 
I have developed a spreadsheet that I have been building over the past year of every doctor, case worker, and anyone who is involved with my sister's life. It is a good idea to begin planning now by putting it down on paper. Write down anything that you can think of that someone would need to know. It will evolve year after year, but this information will be paramount. Every month, I learn something new, and I add it to the sheet. If she needs a release form for the Special Olympics, no more guessing; I know which doctor the form needs to go to and where to bring it. I need to sign her up for karate four times a year, and now I know where to send the check and form. She just asked me to sign her up for a flag football team. Where do I sign her up? Who is going to drive her and pick her up?
 
Finally, my sister is part of a community that knows her. This community has taken years to build. She lives with peers who all attended LABBB. These families were very engaged and proactive when they were in LABBB, and I knew them well. All the group home, members are seen around town, and this has made a significant difference in their safety and support. In difficult times, this group home is going to be the most important part of their lives. I can't emphasize this enough. At the time of this writing, one of the parents in the house just emailed me and said that she arranged transportation and set up overnight accommodations for her housemates who are attending Special Olympics this weekend. What a relief this was! I did not know how we were going to arrange this. Working with a network of engaged parents is essential.
 
Use this information to go through a simulated, real-life situation as if you need to get things in place in a few months. Are you prepared? Are your son or daughter's siblings prepared?
 
I am open to talking with anyone, at any time, if you are interested in starting this conversation with your family. I can meet with you to help you facilitate this discussion and offer my experience and knowledge. It changes the lives of the caretakers, siblings, and guardians when these events happen. Start planning now. Do not wait.
 
If you know people who can benefit from the information in this article, please share it with them.
 
Patric
A New Mindset for Developing Workplace Skills 
By: Brian Walsh
 
                                                                                                                                                                                                                                                                                         
LABBB's longstanding commitment to providing vocational opportunities and experiences for our students has been a hallmark in LABBB programming. With our mindset on continuous improvement, this year we are re-thinking and redesigning elements of our department for the benefit of the students we serve. 
 
This idea stemmed from the notion of providing students with a "liberal arts" style of vocational experiences, while retaining the core responsibility or mission to teach, develop, and expand students' skill-sets as they travel the journey though high school and approach their transition period to post-22 life. In doing this, we can say with confidence, that each student is well-rounded, armed with many transferrable skills based on accessing a variety (possibly as many as 12) different vocational offerings during their high school career; that each student has developed a richness and depth of the world around them, gathering 21st Century Workplace Skills on the continuum of skills model, preparing each as they enter adult services, college, or work life. 
 
For example, TRAC (Transition Readiness Activities in the Community) is a unique piece of the new redesign.  This new model, formerly known as the Work-skills Center, will connect more with community based learning activities, becoming more accessible to a wider range of students; and focus on teaching a streamlined curriculum, meeting the challenges students face in a variety of domains.  TRAC will allow for increased integrated work opportunities and experiences within the LABBB communities. 
 
A new community partnership/worksite also just began as students returned this month.  Minuteman High School has teamed up with LABBB's vocational students to oversee the day-to-day operation of the school's trade shop known as the Design and Visual Arts Copy Center.  This new venture provides wonderful opportunities in terms of skills taught and learned, and aligns nicely with skills that can transfer easily to companies such as Staples and Kinkos.   
 
Summer 2016 brought about new relations with the Lexington Department of Public Works (DPW) and with the Arlington Department of Recreation, where LABBB students performed a myriad of duties at local parks, walkways, elementary schools, reservoirs, and sporting areas. 
 
Seeking business partnerships with local business leaders, and local Chambers of Commerce is a major initiative of our new Vocational TEAM in 2016-2017.  For families and friends of LABBB, we are only as strong as our community, and in saying this, we also humbly ask that you keep us in mind as we seek your guidance and input for our efforts to form and expand our relationships and partnerships, creating meaningful vocational connections and opportunities for the students.
 
As we look to the horizon, we must also express our gratitude for two members of our Vocational Counselor Team, Mr. Tom Brown and Mr. Frank Rallo.  Tom and Frank retired at the end of last year and each has left a heritage that we now, as a department, build upon.  To assist us, we welcome the return of Theresa LeBlanc and the addition of Kristin Spinosa.  Their expertise in vocational planning, transition, and job creation are at the forefront of our new vision for 2016-2017.
 
                                                                                                                                                

Learning is Better Together!
By: Lisa Gurdin
On any given day, you can find our middle and high school students sitting together with our clinicians and specialists talking about real-life issues and concerns. They may be practicing answering the phone, problem-solving with a friend, talking about do's and don't's related to social media, or sharing ideas for managing stress. Through group learning, students engage in the active learning process with their peers.
Our professionals collaborate on group curriculum and teaching methodologies, and oftentimes co-teach the groups. Groups may be designed and conducted by teams of clinicians, special educators, speech and language therapists, and occupational therapists. In this way, group leaders can address a wide range of topics from different perspectives. Topics are tailored to the students' goals and functioning levels. Here are examples of our group topic areas:
  • Social Skills/Pragmatics
  • Independent Living
  • Character Education
  • Self-Advocacy
  • Disability Awareness
  • Women's/Men's Issues (sex education, relationships)
  • Mindfulness
  • Bullying
One of the primary benefits of conducting groups for our students is that groups allow our staff to effectively and efficiently address student goals while promoting generalization of skills across settings. Topics covered in groups may also be explored during individual counseling.  For example, relaxation techniques learned during group may be done during difficult periods of the school day. Group learning at LABBB is just one of the many ways our students gain important life skills they can use in all areas of their lives.
Contact Lisa Gurdin at lgurdin@labbb.net for more information about our groups.
Science at LABBB Butler Elementary School
By: Keith Muise
Over the past school year, our class has been introduced to multiple science units. One of these units focused on ecosystems, with a special emphasis on food chains. Our class created a web that illustrated how energy is passed through a food chain; beginning with plants creating energy from sunlight and ending with decomposition. Our class then explored the necessity of each level of a food chain and how each is dependent on one another. To help illustrate this, the class read The Lorax by Dr. Seuss. After reading the story and having several discussions, the class came to the conclusion that eliminating plants or lower level consumers had a negative impact on consumers higher up the food chain. We reviewed this process during the summer. To end this review, we completed a sequential painting activity that illustrated truffula trees from the book The Lorax.  
 
We are Rocking in Our School Shoes at Memorial Elementary School!
By: Nicole Abrams
We are off to a great start to the new school year in the Memorial K-2 class! With the help of the captivating story Pete the Cat-Rocking in My School Shoes by Eric Litwin, we have targeted all of the components of reading.  We have been practicing school related vocabulary,enjoying repeated readings and listening to the lively accompanying audio version.  We even toured the Memorial School searching for the same places Pete went in his school. Students found the cafeteria, the playground, and the library with excitement!

We worked on reading comprehension strategies such as making predictions, making text-to-self connections, and answering specific questions.  Some of our favorite activities have been creating our own Pete the Cat book and showing our knowledge of the story through graphic organizers.  We even made our own replicas of Pete the Cat. We are excited to be reading and "rocking in our school shoes" in room 116!
LABBB Lexington High School Music Class
By: Peter Asklund
As it is now September and school has started, the Boston Red Sox are deep in a pennant race and the New England Patriots have kicked off their new season successfully despite the absence of Tom Brady and Gronk. Some of the songs associated with these teams, such as "Take Me Out To The Ballgame," "Sweet Caroline," "Dirty Water" and "We Will Rock You," can be heard coming from LABBB's life-skills classroom 715 at Lexington High School on Monday afternoons. 

Just as these songs bring fans together at games, and the Sox and Pats bring New England communities together to unite behind them, Life-Skills' music class brings together many students and staff from the LABBB community, including Kathy Eggers', Lori Doherty's, Kathy Farley's and Peter Asklund's classes. Student Christian Rojas can be seen playing drums to the piano music of Peter Asklund, while staff and students sing, dance and play hand percussion instruments. 

Mr. Kelly can occasionally be seen popping in and bustin' a groove. Incidentally, 2016 marks the tenth year anniversary of LABBB, Life-Skills, music class at Lexington High School. Feel free to join us Mondays from 2:00-2:45 p.m. 

Go Pats! Go Sox!
Recreation News and Events
By: Paula Rizzo, Integration and Recreation Coordinator
Welcome back to an exciting 2016/2017 school year and the LABBB Recreation Activities.
 
A lot is going on in the LABBB Recreation Department.  By now you should have received the LABBB Recreation Booklet.
 
We have a new activity this year, bowling at the Lexington Community Center on Mondays and Wednesdays. 
 
In addition to recreation activities at LABBB, we often receive information regarding other recreational activities that are going on in other communities.  Check out their websites below .  

 
LSEP 2016 
(LABBB Summer Extension Program)


This past August LSEP  (LABBB Summer Extension Program) and LSTP (LABBB Summer Transition Program) had a record high number in the six years we have had this program.  We had 62 students enrolled for the three week program.   We had students involved in cooking, shopping, swimming, yoga, walking, reading, music, arts and crafts and fieldtrips just to name some of the activities.  We had trips to deCordova Museum in Lincoln, MA, Castle Island in Boston, Stone Zoo and Burlington Mall.  The students enjoyed dances and movies weekly, and an art show with judges.  It was a very busy summer for both the students and staff, but we all had fun.  The three weeks flew by.  
 

 






 



LSEP 
Drawing Contest

1st prize: Devan DiSisto
2nd prize: Deanna Moore
3rd prize: Gina Mericantante












Recreation Resource links:

Along with recreation activities at LABBB, we often receive information regarding other recreational activities that are going on in other communities.  Check these out at their websites.  



If you have new ideas to offer, please email them to prizzo@.labbb.net. We are always looking for new ideas and opportunities our students will enjoy!

Remember to follow @LABBBREC on Twitter


Recreation Brochure
2016-2017
Click on the image to view the 2016-2017 Recreation Brochure

Parent Resources and Events
  • S chool Cancellation Policy: 
    All LABBB programs follow the school cancellations in their respective towns.
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About Us
LABBB Collaborative Central Office
36 Middlesex Turnpike
Bedford, Massachusetts 01730
(339) 222-5615