Advocate Winter 2018
New budget released by Governor Baker By Leo V. Sarkissian
As we went to press, we found ourselves facing a new cycle of advocacy for the safety net that helps so many of our constituents in their daily lives. Several articles in this issue share peopleâ€™s successful growth or achievements. Governor Bakerâ€™s 2019 budget, released on January 24, had two highlights. Turning 22 dollars rose to match the growing number of students graduating high school at $25 Million, and Autism omnibus rose to $18 Million. We hope the jump will also address the growing list of those with developmental disabilities. The shortfall in public revenue challenged part of continued on page 18
Please join us for Expect Success: Celebrating Achievers, The Arc of Massachusetts 2018 Gala
Inside this issue...
By Katrin Aback
Government Affairs ...................17
Join us on Wednesday, April 25 at our Expect Success: Celebrating Achievers Gala. We will be recognizing people with disabilities who are successful in the arts, classroom, business, and beyond.
Achieve with us.
They set high expectations for themselves, work to achieve despite challenges, and inspire others to do the same. We are delighted to recognize: Bruce Butler, Helen Coppenrath, Riley Easley,Jonathan Huggon, Tess Keizer and Isaiah Lombardo continued on page 8
Operation House Call..................9 The Friendship Corner................10 The Becker Center for Advocacy..13 Education and Training..............19 News from the Chapters............21
Charles River Center reaches out to elementary school families By Alison Rivers, Charles River Center
217 South Street, Waltham, MA 02453 (781) 891-6270 • www.arcmass.org Leo V. Sarkissian Editor Judy Zacek Associate Editor Beth Rutledge Production Coordinator Carol Daly Layout and Design
The Arc of Massachusetts Board of Directors OFFICERS
Tracy Atkinson President
Deborah Norton Vice President
Scott Borchardt Secretary/Clerk Daniel Sullivan Immediate Past President
Subhadeep Basu Martin Courage Katherine Craven Kristin M. Hilf Susan Lodemore
Michael Maguire John Mallin Geoffrey Misilo Sean Morrissey John Nadworny
Janet Sweeney Rico, Chair Justin Bernard Barbara Pilarcik Jim Buss Renald Raphael Christopher Fox Frank Sally Seth P. Lopes Hillary Dunn Stanisz Mary Valachovic
The Arc of Massachusetts Staff Leo V. Sarkissian Executive Director
Maura Sullivan Director of Government Affairs Kerry Mahoney Director of Education and Outreach Charlie Fiske Director of Public Policy Katrin Aback Director of Development Melanie McLaughlin Policy Officer Jim Ross Director, Widening the Circle Rich Fagan Financial Director Christopher Jenkins Financial Officer
In an effort to find and help some of the most vulnerable families who have a child with special needs — families who might not know about the resources available to them — Nicole and Paige, two Program Coordinators in Family Support at the Charles River Center, are visiting Barbieri Elementary School in Framingham on Fridays. The idea for this innovative program came about a few years ago when a school social worker reached out to the Charles River Center, asking for help for one specific family. Both school and CRC representatives soon realized there were many families who could use assistance navigating the system, so a partnership was formed. Barbieri Elementary is a K-5 school with an enrollment of 688 children. Seventy percent are Hispanic with 40% English Language Learners, and 41% of the school population is economically disadvantaged. Twenty percent of the students at Barbieri have disabilities, with 65% classified as “high-need” — as compared with 43% across the state. Many families, some of whom are new to the country, are not aware that they can get financial support from the Department of Disability Services for expenses such as speech and physical therapies, specialized equipment, respite, and assistive technology. These therapies and tools can be extremely beneficial to the development of their child, but often are very continued on page 3
The Charles River Center outreach demonstrates a best practice activity -- something to which all of The Arc’s affiliates aspire. In this story and the specific family story provided by Brockton Area Arc, we see how vital outreach is for families. In the Charles River Center (CRC) story, the school not only embraced the outreach but expansion is being requested. Despite the presence of professionals, school officials realized they needed the The Arc’s expertise to help them respond effectively to family needs. CRC’s work also reflects three of the core values of The Arc: equity, community, and diversity. Charles River Center’s work with children and adults has other examples of best practices, including the founding of “Wings for Autism.”
Katerina Daley Development & Digital Media Associate
TheArc ArcofofMassachusetts Massachusetts The
Charles River Center reaches out to elementary school families continued from p. 2
expensive and can’t be afforded. Working closely with school social workers, who refer specific families, Paige and Nicole (who speaks Spanish) explain the benefits available to them and help them fill out the paperwork for DDS eligibility. In the process, families also learn what services the Charles River Center can provide to them, such as weekend and recreational programs, educational seminars, respite, assistance with stipends, and much more. Open Houses have also been offered during the evening to better reach parents who aren’t available during the day.
Much of the work is trust-building. Ellen Kilicarslan, Vice President of Family Support, thinks it’s important for the families and the staff of Barbieri to become more familiar with Charles River Center personnel. “We have been very pleased with the collaboration, as it enables the Charles River Center staff to reach those families who would have not otherwise been able to access our agency’s programs and services,” said Kilicarslan. “We are moving in a direction that will allow us to have a presence throughout the district and perhaps engage in program development to create afterschool and other services outside of the school
day for Framingham students.” The program has been so successful, this winter there will be an open house at Cameron Middle School, and there are plans for Charles River personnel to visit Framingham High School on a regular basis as well. This is an important goal, because the high school years are a critical time for families, as they determine next steps for their child as he or she leaves the school system and transitions to adult services. The Charles River Center wants families to understand that we are there for them every step of the way.
Save These Dates! Be sure to mark your calendar for these important events. Visit our website (www.arcmass.org) for details Tuesday, February 13 Supporting Families Day – State House Wednesday, March 7 T he Arc/MDDC Legislative Reception – State House Thursday, April 12 AFAM’s Autism Awareness and Acceptance Day – State House April 23-25
Disability Policy Seminar, Washington, DC
Wednesday, April 25 The Arc of Massachusetts Gala and Auction Boston Marriott Newton
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Providing services since 1954…
Adult Day Habilitation Services Family Support Program Family Autism Center ALEC First Responder Training Adult Social/Recreational Programs Harbor Counseling Center Adult Family Care Residential Programs Employment and Training Programs www.arcsouthnorfolk.org www.lifeworksma.org
Thank you for your support! assured regarding the well-being, safety, and happiness of their loved ones. Our near 65 years of work has been made possible by the support of our hundreds of passionate supporters, our chapter affiliates, countless human service agencies, foundations, and corporations who have supported The Arc’s mission through gifts, sponsorships, and grants. Thank you all for your support!
The Arc of Massachusetts’ new building
The Arc of Massachusetts would like to thank everyone who supported us and our mission by making a contribution in 2017. Thanks to the generous donations from our supporters, we have been able to continue our work of enhancing the lives of people with intellectual and developmental disabilities within Massachusetts. All people with I/ DD, including autism, deserve equal rights and treatment, and with your help, we have been able to work to ensure a world in which they can be part of the community. We are especially thankful for all of the donors who made our beautiful new building possible as part of the “Home for the Future” Capital Campaign. Thanks to the support of individuals, families, chapters, agencies, and foundations, The Arc now can hold meetings with our dozens of partner agencies, host legislators and supporters in comfort, conduct efficient legislative outreach, offer a venue
for workshops for families and professionals, and provide work space for our team of staff, volunteers and students. For nearly 65 years, The Arc of Massachusetts has worked to enhance the lives of the 200,000 people with I/DD, including autism, across the Commonwealth of Massachusetts. We have provided invaluable advocacy and support services within the community, ensuring that families can rest
Please consider supporting The Arc of Massachusetts in 2018. There are many ways you can have a direct and lasting impact on The Arc’s work. Learn more by visiting our website or contacting Katrin Aback, Director of Development, at aback@ arcmass.org or 781-891-6270 x105.
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The Arc of Massachusetts
Michael Maguire joins The Arc of Massachusetts Board of Directors Michael S. Maguire, who was recently elected to The Arc’s Board of Directors, has a deep understanding of the challenges and life stage transitions that parents of disabled children manage each day. He and his wife, Carole, have two children – Kelly, age 21, and Allyson, age 18. Ally is excelling at life, even with the unique challenges of her genetic disability, Trisomy 12p. The Maguire family has been deeply involved with both Special Olympics and Best Buddies, and especially appreciate the latter’s emphasis on one-to-one
friendships. Mike has been a fundraiser for Best Buddies, participating in its major bike rides that involve thousands of riders and raise millions of dollars. As a longtime senior executive at SAP, the European multinational software corporation, he encourages his colleagues to become engaged in any efforts to assist the intellectually and physically challenged citizens of their communities. What motivated him to become so personally
Michael and Allyson Maguire
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connected with these charities … and now The Arc? In a recent interview he commented on the importance of getting “out of his own head.” He added “I feel all charitable efforts do just that for all of us. (They) bring life back to its most foundational purpose. Help your fellow man. And I feel these efforts are never truly selfless, for you always get back to your life so much more than you expect.”
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Meet our Gala Achievers! By Katerina Daley
At our 2018 Gala, The Arc of Massachusetts will be recognizing six individuals with disabilities who have achieved success in the arts, classroom, business world, and beyond. The following paragraphs provide a glimpse of their inspiring stories of success. Reliable. Dependable. Team worker. These are just some of the characteristics used to describe Bruce Butler by his supervisor at Bruce’s person-centered planning meeting this year. These are the kinds of high praise that anyone would be thrilled to hear from their supervisor, but for the Butler family, they mean so much more. Bruce, a 67-year-old legally blind man with autism and an intellectual disability, has been working consistently and independently for the past 50 years. Communicating clearly has been a struggle for Helen Coppenrath her whole life. Helen, a 14-yearold with autism, often speaks in a more reactive way, commenting on her emotions more than anything. Yet ever since she took up music, her language abilities have begun to grow. Helen has quickly established herself as quite the virtuoso: she has perfect pitch, and she can play the flute, piano, and alto saxophone -- the latter of which she learned in one month.
but neither of those were enough to prevent him from making his dream a reality: Riley is the founder of the small business Riley Kind. Inspired by his own passionate commitment to promoting kindness, the Riley Kind business specializes in creating personalized greeting cards with the ultimate goal of spreading kindness in the world. All Things Possible. That’s the name of 24-year-old Jonathan Huggon’s business -- and once you’ve learned his story, you’ll realize just how true an assessment that is. Jonathan has cerebral palsy. Although he is quadriplegic, nonverbal, and dependent upon a wheelchair and personal care assistants, he lets nothing come between him and his plan for achieving his dreams of becoming a successful photographer and composer. Social inclusion has been one of the most crucial aspects of Tess Keijser’s success. For her entire life, Tess, a young woman with Down syndrome, has been in inclusive settings, whether in the classroom or the workforce. Now almost 22 years old, Tess is thriving as a Director for Pampered Chef, hosting
her own parties and selling over $20,000 worth of products in the three years she has been with the company. And she has done all of this and more while managing Celiac disease, dealing with chronic episodes and flare ups along the way. Just by speaking with 22-year-old Isaiah Lombardo and his mother, Angela, you can immediately tell how well-rounded and responsible a young man he is. He once applied for a job on his own without telling his mother, and ended up working at Stop & Shop for four years. He takes part in advocacy in many areas, including annual disability awareness training for all 4th graders in the Brookline public school system and co-teaching as part of The Arc’s Operation House Call program. This brief glance at Isaiah’s resume shows how truly impressive a young man he is – and knowing that he has Down syndrome makes his achievements all the more impressive. The Expect Success: Celebrating Achievers gala will be held on April 25. For tickets and sponsorship information, please visit arcmass.org/gala.
“Your future rests in your courage.” That’s the motto that 22-year-old Riley Easley lives by. Riley has both autism and anxiety,
The Arc of Massachusetts
Welcome, Melanie Perkins McLaughlin Melanie Perkins McLaughlin has joined The Arc of Massachusetts as a Policy Officer working on disability policy and legislative advocacy. She is an Emmy-award winning filmmaker with over 20 years’ experience in broadcast media production. As a former ward of the state of Massachusetts, her life’s work has been as an advocate for social justice for marginalized children. She was the first Allen C. Crocker Fellow with the Massachusetts Developmental Disability Council and the Institute for Community Inclusion where she collaborated with the National Down Syndrome Society, creating 10 short films celebrating the lives of people with Down syndrome. In 2016 she received the Mass. Down Syndrome Congress esteemed Crocker Award of Excellence for her work advancing the lives of people with Down syndrome.
McLaughlin recently graduated from the Harvard Graduate School of Education with a Master’s degree in Education Policy. She is the co-chair of the Department of Elementary and Secondary Education’s Special Education Advisory Council, the co-chair of the Medford Special Education Parent Advisory Council, a member of the Board of Directors of the Federation for Children with Special Needs, and a member of the Building Inclusive Schools Steering Committee with the Department of Education. McLaughlin has consulted on projects with ABC News, HBO, and the BBC. She has been interviewed by TIME magazine, USA Today, CBS, and ABC. She has been a public speaker at Harvard School of Medicine, Tufts School of Medicine, MA Families Organizing
Melanie Perkins McLaughlin
for Change, The Department of Public Health, the Department of Elementary and Secondary Education, and The Ruderman Family Foundation. McLaughlin was a family faculty member for The Arc’s Operation House Call, working with self-advocates and their families teaching doctors about life with disability at Tufts Medical. She recently produced short videos on continued on page 8
Katerina Daley joins staff as Development and Digital Media Associate
The Arc of Massachusetts is pleased to announce that Katerina Daley has joined our staff as our new Development and Digital Media Associate.
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Originally from Cambridge, MA, Katerina has been passionate about disability rights from a very young age, due to her mother being diagnosed with Multiple Sclerosis. For high school, she attended Boston University Academy, and she then went on to complete both a Bachelor of Arts in English and a Master of Arts in Comparative Humanities in a five-year period at Brandeis University. In her time at Brandeis, she took part in a three-year internship at
the Women’s Studies Research Center that allowed her to focus on understanding and sharing the narratives of disadvantaged peoples. She also learned a great deal about web design and blogging as a result of an online project called The Heroine’s Journey Project. She further spent a year working as a Graduate Writing Assistant in Brandeis’s Student Support Services Program, helping ESL students, students with learning disabilities, first generation students, and more find continued on page 8
Please join us for Expect Success: Celebrating Achievers, The Arc of Massachusetts 2018 Gala continued from p. 1
The Gala will be held at the newlyrenovated Boston Marriott Newton. To kick off our evening, guests are invited to enjoy a cocktail reception and to bid on an array of fun silent auction items. This will be followed by a seated dinner and a live auction featuring fabulous trips and prizes. For nearly 65 years, The Arc of Massachusetts has been enhancing the lives of people with intellectual and developmental disabilities, including autism, and their families, by advocating for community supports and services that foster social inclusion, self-determination, and equity. You are a vital partner in
Katerina Daley joins staff continued from p. 7
their voices through their writing. In addition to her academic pursuits, Katerina is an ardent consumer of pop culture, with a real passion for science fiction, fantasy, and all things 1980s. She is a published author and critic on entertainment-focused websites, including Screen Rant and The Artifice. Katerina is thrilled to be joining the team here at The Arc of Massachusetts, and she looks forward to meaningfully contributing to The Arc’s important mission of enhancing the lives of people with I/DD everywhere.
what we are accomplishing and we hope that you will be a part of this special evening!
Sponsorship Opportunities Sponsorships start at $1,000 and corporations, individuals, and agencies an opportunity to get involved. Please contact Katrin Aback, Director of Development, to learn more about sponsorship levels and benefits. She can be reached at firstname.lastname@example.org or 781-891-6270 x105.
For Additional Information and Updates In addition to sponsorships, we are seeking unique and fun items for the live and silent auctions. To
make an auction donation, please contact Community Relations Manager Judy Zacek at zacek@arcmass. org or 781-891-6270 x102. We will update information about the Gala regularly. Visit www. arcmass.org/gala to get the latest details, including more about the special achievers we are recognizing, and to purchase tickets and sponsorships. All proceeds will support the advocacy and outreach of The Arc of Massachusetts. Be sure to sign up for our email list on our home page to stay up to date.
Save the date and make plans to attend today! See you on April 25, 2018!
Welcome, Melanie Perkins McLaughlin continued from p. 7
the education reform initiative “By All Means” with Harvard faculty member and former Secretary of Education Paul Reville on issues related to policy and education reform, and is currently consulting with Dan Habib on his upcoming feature-length film, “Intelligent Lives.” McLaughlin is passionate about creating systemic change for our most marginalized communities –
children with disabilities, economically disadvantaged children, and minority children. She believes stories connect people to policy and are a powerful vehicle for systemic change. She is happy to be working with The Arc to create equality of opportunity for all children. Melanie McLaughlin is the mother of three children, two high school teenagers and one 3rd grader who also has Down syndrome.
Stay Informed. Stay In Touch. Like us on Facebook at https://www.facebook.com/thearcofmass/ Follow us on Twitter at @TheArcofMass
The Arc of Massachusetts
Operation House Call
Operation House Call Happenings Operation House Call (OHC) is busy this time of the year. reaching close to 300 medical and nursing students in the next 2-3 months! We will teach 120 graduate students from Simmons College of Nursing and Health Science, another 100 from Yale School of Nursing, and we will teach our usual blocks of medical students from Boston University School of Medicine and Tufts School of Medicine. In the Spring, we will have lectures and co-teaching at UMass Medical School. We are also working hard to pass our OHC legislation through the Joint Committee on Public Health. At the recent hearing, The Arc assembled an effective panel to support the legislation, including a past medical student, families, and professionals. The committee deadline to pass the legislation favorably is early February, so we continue to advocate with our legislative leaders. The OHC team has been focusing on enhancing our co-teaching experience for both students and co-teachers. We recently had the Boston Globe highlight our coteacher and our class at Boston University School of Medicine. You can access the article on The Arc’s website. The Arc is especially grateful to all our families and co-teachers for helping to grow and solidify such an important and impactful program here in Massachusetts.
Boston Globe photographer captures a moment at an OHC class at Boston University School of Medicine.
SKILLS FOR LIFE
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Skills For Life is a program of the Ivy Street School, a day and residential school helping students and their families overcome the challenges of autism spectrum disorder, behavioral health diagnoses, and brain injury. The Ivy Street School is a program of MAB Community Services, which has been creating opportunities for people with disabilities since 1903.
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Friendship Corner Periodically Widening the Circle will feature a story that showcases efforts to connect people with and without disabilities in deep and meaningful ways. Each story will be followed by an “analysis” of the elements within the story that we can look to as lessons for how to make friendships occur in other people’s lives.
Greg By Paul Campbell, Vinfen
Greg is an individual who moved into a new home two years ago. When he arrived, Greg spoke with staff and expressed an interest in getting out into the community, stating that he really enjoyed attending church. With support from a staff person familiar with some of the local churches, Greg was able to find a church to attend regularly, and after about a year he made the decision to officially become a member. Recently Greg expanded his role in his church community, joining the Usher Board Committee. On a typical Sunday, Greg can be seen greeting church-goers, passing out bulletins, and welcoming visiting guests. Greg takes this role very seriously, buying a new suit at a Big & Tall Men’s Shop and getting regular haircuts so that he fits in with the other ushers. The ushers also meet on Wednesday evenings. Greg often stays late to eat dinner with the group. Greg has grown especially close with one usher. After church on Sundays, Greg generally goes out to eat with his friend, who also drops him off back at home. Greg often invites his friend over for dinner. Greg and his friend have several common interests and in the past few months they have gone to the movies together and attended two art workshop classes. Staff no
longer accompanies Greg to church or on his outings with his friend. It is important to note that Greg is on a behavior plan. Recently, however, he has demonstrated a significant decrease in anxiety, which he struggled with in the past. Now Greg is demonstrating increased feelings of self-assurance and happiness, and his behavior plan will be phased out at his upcoming ISP. This is a major milestone for Greg. Not only has this progress provided a major boost in his confidence, but he is actively seeking new friendships by participating in other activities such as book clubs and adult education classes. We believe that Greg will continue on his wonderful current pathway to new friendships. This story contains some very meaningful lessons: Greg was very clear that he was interested in attending a church. Staff listened to this and invested their time in making that connection happen. Being sure that people receive support for the things in which they are truly interested is important! It was immensely helpful that one of the support staff was already familiar with the church that Greg wanted to attend and also knew some of that church’s members.
He was able to lay some groundwork ahead of time, including encouraging the existing church members to extend a welcome to Greg. Identifying “gate keepers” in the community (outside of the human service system) can enhance the chances of someone being part of a group and establishing relationships, including friendships. Staff realized that being a regular participant at his church was important. Being in the same place with others, at the same times, over a long period of time are essential ingredients in setting the stage for friendships to develop. After attending church for a while, Greg was supported to become an official member. This likely involved a bit of learning (songs, rituals) and a commitment from Greg (and his supporters). This church membership was a valued social role for Greg to fill. But, tellingly, Greg’s supporters did not stop at “church membership.” They helped Greg assume an even more valued social role as an usher and member of the Usher Board Committee! Too often people with disabilities are not supported to expand their roles within groups. Greg (and his supporters) recognized that to be an usher included continued on page 11
The Arc of Massachusetts
Friendship Corner Greg continued from p. 10
looking the part for that important role. Buying a new suit and getting regular haircuts helped Greg both fit in (as one of the ushers) and stand out (as a valued member of his church community). Greg’s relationship to his fellow ushers (especially one of them) grew. But it was not “just” friends at church (although that’s pretty good). Greg was supported to attend the weeknight meeting of the Usher Board and to go out to dinner with them. He was supported to invite a fellow usher to his home for dinner. There were
opportunities to explore other interests beyond church with the people he met in church. The reciprocal nature of these relationships and the expansion of connections beyond the original place of contact (“transcending context” as Dr. Zachery Rossetti, Boston University, refers to it) are important parts of true friendships. Greg’s support agency was wise in “letting go.” Staff were eventually able to fade their supports so that they no longer needed to accompany Greg to church, the Usher Board meetings or other activities
ing our upcom inars t i s Vi e for Sem sit eds e w b ial Ne c Spe
and events with his friends. And this frees up staff time to devote to helping other people they serve connect in the community! Greg’s new friendships and valued roles have given him new confidence. He is willing to try new things. These same friendships have also helped decrease Greg’s anxiety and “behaviors” that “required” him to have a formal behavior plan. Phasing out that behavior plan is a good indicator of the Power of Friendships!
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Florence Finkel Fund adds support to the Pathways to Friendship Project The Arc of Massachusetts (The Arc) in Partnership with The Florence Finkel Fund (a Program of PLAN of Massachusetts and Rhode Island, Inc./PLAN) and the Department of Developmental Services (DDS) is pleased to announce a collaboration in support of the Pathways to Friendship Project. We appreciate PLAN’s commitment to social inclusion. Pathways is an existing project hosted at The Arc and funded by the DDS to address the lack of social ties between persons with and without disabilities. Too often, persons served through DDS funding, experience isolation in their daily lives. Thirteen agencies are supporting members whom they serve to benefit from greater and more meaningful social connections. The goal is to develop long-term relationships – hopefully friendships – between the individuals served and other members of their community without disabilities. Earlier this year, PLAN – having established the Florence Finkel Fund -- approached The Arc about opportunities to directly support people with intellectual and developmental disabilities (I/DD). Mrs. Finkel, who passed away in November, 2015, was a tireless advocate on behalf of people with IDD. She was intimately involved in the founding of PLAN and the development of The Arc. PLAN has chosen to honor her memory by creating the Fund, which will support activities in Path-
ways through a grants program. The Finkel Fund will support costs which typically are not affordable to the grantees, such as various activities or services that would facilitate progress in the development of social connections and friendships. Examples include memberships to clubs, attending events where relationships can be nurtured, purchasing equipment, etc.
About Florence Finkel The mother of two children, one of whom was diagnosed with a developmental disability, Florence was a founding member of PLAN and of The Arc of Massachusetts She remained an active and contributing member for decades. Known as a compassionate and outspoken advocate and a champion of human rights, Florence was a member of both The Arc of South Norfolk and the Dever Developmental Center Association. She was a founder and board member of PLAN of Massachusetts and R.I. (then known as the MARC Trust). Florence was president of the board of directors of The Arc of Massachusetts from 1966 to 1968 and served on a variety of com-
mittees over the years. She chaired the DDS Statewide Advisory Council (then DMR) and was a member of the state Human Rights Committee for decades. She also served on the Massachusetts Commission on Intellectual Disabilities (name updated). Her array of accomplishments was recognized in 2001 when she received the Gunnar Dybwad Leadership Award from the Commonwealth of Massachusetts and again in 2005 when was one of ten honorees at The Arc of Massachusetts’ 50th Anniversary celebration. Looking back at the early years of the Arc movement, Florence pointed with particular satisfaction to her successful efforts to ensure quality control of the parent-founded preschool nurseries when their future was in jeopardy (1962-65). She is survived by her son, Donald Finkel, and her daughter, Marcia Hirsch and her husband Leslie, as well as several grandchildren and greatgrandchildren.
The Arc of Massachusetts
Becker Center for Advocacy
One story among many By Julie Heffernan, Advocacy Alliance Coordinator
Empowering Advocates From 10:00 to 11:30 a.m. on the first Monday of every month, The Arc’s Government Affairs Committee gathers in the sunny conference room in The Arc’s beautiful new building on South Street in Waltham. The people assembled --representatives from various Massachusetts affiliates of The Arc, staff from a number of human service organizations, self-advocates, and family members --- meet to learn from The Arc’s Executive Director Leo Sarkissian, Director of Government Affairs Maura Sullivan, and Director of Public Policy Charlie Fiske. The goal is for attendees to be empowered advocates. They want to make change in governmental policies and practices on a state and federal level. They want to advocate for legislation or funding that will assure a full array of quality services and supports and the protection of human rights of persons who have intellectual and/or developmental disabilities, including autism. Among the frequent attendees are 69-year-olds Marcia and Alain Grenier from Worcester. I asked them why they made the seventymile round-trip each month and their answer was quick and specific: they want to keep abreast of the legislation and policy initiatives that will affect their son Marc, a 27-year-old man with autism
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who lives in a group home. The announced cuts in funding for residential services has them especially worried about their son’s future. When Marcia learned that part of my job as Advocacy Alliance Coordinator is to collect stories, she wanted to tell me Marc’s.
Their story Marcia Wetherbee and Alain Grenier met while on an Appalachian Mountain Club hike in the Millbury conservation lands. Both were 35 years old. Marcia had earned her MS in biology and Alain had Marc Grenier earned a MA in French literature. They married a year later and began a family; first Justin was born and then two years later came Marc. Marcia, who • Master Special Needs Pooled Trust stayed home to • Family Special Needs raise her boys, Third Party Pooled Trust noticed some developmenIt may be a future tal differences planning solution for the between the individuals we serve. two: Marc had Protect your family some “seri-
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continued on page 14
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Becker Center for Advocacy One story among many continued from p. 13
PDD. Alain worked as a custodian at nearby Clark University. The job entitled him to five weeks of vacation time per year, which he spread out over Friday afternoons to give Marcia a break, help her with the boys, and to attend educational meetings.
moved on in our conversation, telling me, “I’m sure you know all about the ‘refrigerator mother’ comments that were made in those days, so I won’t even get into that.” When it became clear that the WPS simply could not work for Marc, Marcia and Alain hired a lawyer. As a result, Marc received exWhen the Grenier boys got to be tensive testing, was diagnosed with school age, they enrolled in the autism and an intellectual disability, Worcester Public Schools. The WPS and was put into an emergency did not work for Marc. Marcia residential placement. He stayed quietly told me that many of the for three months, coming home things that were said about Marc every weekend, and he made at the time were actually critiques tremendous progress. At the end of her parenting -- but she quickly of three months, with Marc’s new diagnoses and learning strategies in hand, the We share a common bond — we are parents Greniers and siblings of people with special needs. were supFor over 20 years we have been helping posed to families like our own to plan for their future and provide for the lifelong needs of again enroll their family member with a disability. him in the WPS. They We talk about the money but we knew at the know that money is not everything. It’s about planning for a full life. outset that wasn’t going Cynthia Haddad, CFP® to work, so John Nadworny, CFP® instead Marc Alexandria Nadworny, CFP® commuted daily from Worcester to a day A specialty practice to Shepherd Financial Partners www.specialneedsplanning.com program in Braintree/ 1004 Main Street | Winchester, MA | 781-756-1804 Randolph. Financial planning and investment advice offered through Shepherd Financial His educaPartners, LLC, a registered investment advisor. Securities offered through LPL Financial, member FINRA/SIPC. Special Needs Financial Planning, Shepherd tion was Financial Partners, and LPL Financial are separate entities supposed to
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be supplemented with twenty-five hours a week of home therapies, but Marc rarely got the twenty-five hours he was entitled to. And so, after almost two years of earnestly trying to make the day program work for Marc, the Greniers made the hard decision to place him in a residential school. For the next fourteen years, Marc lived at his residential school and made good progress. Marcia and Alain visited him regularly and worked closely with the teachers and staff, and Marc went home on weekends. In his final years there, Marc lived in a group home and, according to Marcia, the staff worked hard to make it cozy and homey. Among other things, portraits of the residents hung on the walls. The portrait of Marc was taken at his job. Marcia felt that it truly captured his essence; she loved it so much that she asked to have it when Marc aged out of his residential school’s group home. At age 22, Marc transitioned to a residential program for adults. It is in Worcester, so it is convenient for Marcia and Alain to visit and for Marc to come home on weekends. Marc lives in a group home with four other adults, which is staffed by three and sometimes four employees. He receives his therapies on site and he works at a day program in nearby Sterling. Marcia, a regular visitor, is in frequent contact with Marc’s caregivers. Though continued on page 15
The Arc of Massachusetts
Becker Center for Advocacy One story among many continued from p. 14
he lives in a residential placement, Marc is always on Marcia’s mind. Marc’s future is on Marcia’s mind. She is concerned about the potential federal cuts in Medicaid because MassHealth pays for many services he is dependent upon, namely his day program, his health care, and his transportation. And Marcia is deeply concerned about the cut in residential funding and the many ways it will affect Marc. Marcia worries that the reduction in residential funding may cause Marc’s residential program to lower salaries and, thereby, lower the quality of the staff. She wonders whether the program will be able to attract well-trained staff that builds purposeful activity into Marc’s life, or whether poorly
I interviewed Marcia and Alain just trained new employees will simply two days before Alain’s seventieth fill his life with meaningless busy birthday. Alain told me that he will work. Marcia thinks his residential retire this month, and I was struck program may have to hire fewer employees, and she worries that a by the poignancy of it. These two smaller staff will mean real safety well-educated people, who have dedicated the last thirty years of and health concerns for Marc. She their lives to raising their sons and is well aware that accidents and navigating the educational, therawandering off are serious risks for peutic, and residential systems on people with autism, and she worries behalf of their son with autism, will about Marc’s inability to identify the not have the cares of the world source of pain when he is hurt. Will removed from their shoulders as the likelihood that Marc will have they enter retirement. Instead, they an accident, wander off, or suffer will remain active and alert, doing from undiagnosed pain increase as all they can to care for their son in the size of the staff decreases? In Marcia’s words, “For Marc, these are these uncertain political times. not quality of life issues. They ALL PEOPLE WITH DISABILITIES – are a matter of LIFELONG AND AGE-RELATED – life and death SHOULD HAVE THE MEANS TO LIVE . . . really.” HEALTHY AND WELL
The issue Due to a shortfall of $600 million in state revenue this summer, funding for employment, day, residential, and transportation services this year at the Department of Developmental Services does not keep pace with the maintenance costs. These “maintenance” costs are what the state must absorb for one or all of three reasons: adjustments in rates for those providing the services to keep pace with inflation, full-year funding for those who turned 22 years of age the year before, and/or increased needs of those in services due to aging or illness. Providers of housing, employment and other services are being asked to provide savings and/or reduce certain services. Though there no longer is a precise reduction being publicly stated, the shortfall is thought to be between 1% and 2%. This could mean cutting back staff ratios, less community exposure or work training, and/or the inability to address transportation needs.
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Becker Center for Advocacy
The Becker Center Advocacy Alliance By Julie Heffernan
Dan and Angela Becker worked hard to make sure that their son Mike, born with Down syndrome in 1965, would have a good life long after they had passed away. When he predeceased them, their legacy became a gift for our entire community: in 2014 The Arc of Massachusetts dedicated the Center for Advocacy in honor of the Becker family’s decades of work. In September 2017 a portion of that gift was used to hire two Advocacy Alliance Coordinators for The Arc – Herb Cabral and I – to work as liaisons between The Arc of Massachusetts’ central office in Waltham and its eighteen affiliates throughout the state. Herb and I have spent the last four months meeting executive directors, staff
How are we going to protect them in the future? By planning a legacy today! If The Arc of Massachusetts is already in your will, please let us know. Some people like to remain anonymous, while others prefer a bit of recognition. Either way, please let us know your intentions because it helps The Arc plan for the future. Contact Katrin Aback at 781-891-6270, ext. 105 or Aback@arcmass.org
members, parents, and self-advocates from the various affiliates of The Arc of Massachusetts and spreading the word about the many policy initiatives The Arc has undertaken this year to enhance the lives of people with intellectual and developmental disabilities, including autism, and their families. These initiatives address the need for community supports and services that foster social inclusion, self-determination, and equity across all aspects of society. As Becker Center Advocacy Alliance Coordinators, Herb and I have endeavored to share The Arc’s policy initiatives with the teams – made up of a staff member, a parent, and a self-advocate – we have assembled at each one of The Arc of Massachusetts affiliates, but that is only part of our job. To make The Arc’s advocacy as effective as possible, we need to collect your stories -- your experiences of parenting and supporting a family member with a disability, or of living with a disability yourself – so that we can share them with our legislators. As parent and educator Glenn Gabbard explains in “Family Experiences: Ways to Lead Change Through Telling Your Story” (1998), “Stories … reveal the details, the impact of systems on the daily lives of families and children … Stories often spur change in systems that seem impossible to understand.” There are many ways you can share your stories; for example, email us
at firstname.lastname@example.org or post on your Facebook page and allow us to re-post or reprint. For group training on story-telling for parents and/or self-advocates, your can invite Herb or me to assist. Of course, there are other ways to share your stories: invite your local politicians to a story-telling night, present your story during your local politician’s office hours or at a town hall meeting, share your story via email or a phone call with your state legislators, testify at the hearing for one of the proposed bills that is especially near and dear to your heart, or make plans to attend one of The Arc’s upcoming days at the State House: Supporting Families Day (February 13, 2018), The Arc and Massachusetts/Developmental Disabilities Council Day (March 7, 2018), and AFAM’s Autism Awareness and Acceptance Day (April 12, 2018). However you choose to do it, harness the power of the story to make disability-related issues both concrete and personal. Use your personal stories of disability as tools for advocacy (Carrie Glover and Courtney Taylor, “Kindred Stories of Disability: Sharing Personal Experiences to Impact Public Policy,” 2017). To see how a story can make a disability issue concrete and personal, read the article in this issue about Marc Grenier and his parents’ concerns about the announced cut in residential funding (One story among many).
The Arc of Massachusetts
As Legislative Committee deadlines approach, The Arc pushes priority legislation Hearings for The Arc’s priority bills were completed for this session in December with an outstanding turnout and panel testimony for Criminal Justice Training Regarding Autism. The Arc’s panel included Bill Cannata, Director of the Autism Law Enforcement Education Coalition (ALEC), Maura Sullivan, Director of Government Affairs, and Robert Bongiorno, Chief of Police for the Town of Bedford. Each panel member is also a parent of an individual with autism. Through great community support and partnering with Advocates for Autism of Massachusetts, The Arc was able to submit many written testimonies as well. The testimony was well received by the Joint Committee on Public Safety and Homeland Security.
The Arc also testified for a prioror I/DD “get stuck” or just need ity bill and policy concern related verbal or gestural cues to succeed. to prompting and cueing in the Giving someone cues and superviPersonal Care Attendant (PCA) sion allows them (over time) to program. The Arc’s Director of make progress in learning indepenGovernment Affairs testified for dence and also allows for dignity in Representative O’Day’s bill, An Act personal care. Related to Prompting and SuperviFebruary and March bring commitsion in the PCA program. The PCA tee deadlines for decisions on these program does not currently allow bills. Follow Notes from The Arc and care hours based on the indiour social media to keep up to date. vidual’s need for verbal or gestural To learn more about our priority cueing/ prompting in order to bills, call or email Maura Sullivan successfully complete a skill. The at 781 891-6270, ext. 113 or individual must need physical email@example.com tance in order to qualify. The SHARED LIVING Arc educated Sharing memories and experiences together! the committee about how For adults 22 and up many people who are eligible for DDS with autism residential supports
Space for Sale! It makes sense to concentrate your advertising where it does the most good – where your potential clients are! Your ad in Advocate reaches more than 6,000 people who have a strong interest in your services. For ad rates and deadlines, call Beth at 781-891-6270, ext. 101
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Contact: Tara Jordan, Associate V.P. for Adult Services 405 Washington Street Hanover MA 02339 781-829-1240 www.CushingCenters.org firstname.lastname@example.org
New budget released by Governor Baker continued from p. 1
the Department of Developmental Services (DDS) budget significantly with pressure to reduce spending. One bright star in this situation is the Governor and Legislature’s initiative to fix the Turning 22 funding formula for graduates of special education. The last time this was addressed was in the 1990s. Over the last several years, Massachusetts moved up in fiscal effort compared to other states. But as the numbers of the DDS caseload grow (now 38,000),
there are other costs that are unavoidable. In day- and employment- services, the state moved away from sheltered work due to the isolation and low staff support. But $20 Million in funding is still outstanding for that transition to assist over 3,000 adults. On the family support side, more dollars can reduce residential service demand, but in the meantime maintaining a stable residential budget is a must to address the 11,000 being supported.
We can slow the growth of the DDS budget by providing more shared living, combining DDS services with MassHealth supports, and increasing Family Support. But this takes three years to see results and in the meantime, new dollars maintain current supports while addressing the adult needs of those graduating from schools. Please see our full coverage on our website, TheArcofMass.org. Click on Advocacy and you’ll see State Budget in the dropdown.
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The Arc of Massachusetts
Education and Training
Transition Conference 2017
The Brookline Buds rock!
Over 330 parents, presenters, professionals, educators, exhibitors, and self-advocates from across the state attended the Transition from School to Adulthood: Creating a Meaningful Life Conference at the College of the Holy Cross on November 4, 2017. Conference participants were able to choose from 26 workshops and panel discussions covering such issues as transition for students with Autism; Massachusetts Special Education laws that govern transition; making friends at school; living on your own; and understanding federal and state benefits and the new ABLE accounts in Massachusetts. Thanks to the assistance of the Autism Support Center of The Northeast Arc and Centro, two sessions were also offered in Spanish. We are grateful to the professionals, educators, parents, and self-advocates who shared their expertise and resources with us in these informative workshops. At lunch, the Brookline Buds from the MUSE Foundation performed and had the crowd singing and dancing to Sweet Caroline!
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The keynote, “Self Determination: A Family Affair,” was presented by Michael L.Wehmeyer, Ph.D, the Ross and Marianna Beach Distinguished Professor in Special Education and Director of the Beach Center on Disability at the University of Kansas. The keynote session emphasized the family’s role in ensuring positive transition outcomes by supporting a young person’s self-determination. Here are some of the comments from those who attended: Excellent conference. We were told that it is a great conference to attend and that is 100% accurate. I left with a lot of new information and was very glad that I attended. Thank you! I think I know what my next steps are! I think there was an abundance of information for families!
Keynote speaker Michael L. Wehmeyer, Ph.D.
Parents attending the conference understand the next steps. Transition successes vary by district. This conference is always a great resource and reminder of what else I can add to my to do list as I walk this journey. We are grateful to have had the support of so many to help make this day possible! Special thanks to our supporters: Massachusetts Department of Elementary and Secondary Education; Massachusetts Rehabilitation Commission; Advocates for Autism of Massachusetts; Department of Developmental Services; Massachusetts Families continued on page 22
Hats off to our incredible sponsors who helped to make this conference a success! Sponsors: The Guild School, Federation for Children with Special Needs, Massachusetts Down Syndrome Congress, HMEA, PLAN of Mass and Rhode Island, SPARK, Skills for Life, NESCA, and Northeast Arc. Special recognition to Affiliates: The Arc of the South Shore, The Arc of Greater Plymouth, Lifeworks, The Arc of Bristol County, Northeast Arc, Charles River Center, EMARC, and The Arc of Greater Haverhill Newburyport
Education and Training
The following Webinars are free of charge, thanks to the Becker Center for Advocacy and the Massachusetts Partnership for Transition to Employment
Tuesday, January 30, 2018 12:00 Noon – 1:00 PM MassHealth Updates: Understanding the Changes Ahead Presented by Leo Sarkissian, Executive Director, The Arc of Massachusetts FREE MassHealth will be implementing new changes on March 1st! These changes could affect your doctor’s and services! Don’t be left out! BE INFORMED!
Tuesday, February 6, 2018 12:00 Noon - 1:00 PM, Rewarding Work Presented by Eleanor Parker, who will demonstrate the Job Board and provide tips on how to recruit direct support staff DDS families may use Rewarding Work’s free Job Posting Board! Rewarding Work develops and manages online personal care and respite directories throughout Massachusetts and in seven other states. Funding for the Job Board was provided in part from a grant from the Office of Attorney General Maura Healey to improve access and opportunities for individuals with disabilities through the use of technology. Families write a short description describing their hiring needs, and post it free of charge on www.RewardingWork.org. The Job Board makes it easier and faster for families to connect with qualified workers. Since their automated Job Board went live less than a year ago, they have processed nearly 2,000 job descriptions and more than 12,000 worker responses.
Monday, February 26, 2018 12:00 Noon – 1:00 PM Advanced Legislative Advocacy Training Presented by The Arc of Massachusetts: Maura Sullivan, Director of Government Affairs and Program Director of Operation House Call and Julie Heffernan, Advocacy Alliance Coordinator The Advanced Training will focus on: • Building and strengthening relationships with your elected officials • Critical strategic planning and the budget • Telling your story • Measuring your effectiveness and success • Identifying and understanding obstacles
Tuesday, March 27, 2018, 12:00 Noon – 1:00 PM State Budget Update Presented by Leo Sarkissian, Executive Director, The Arc of Massachusetts - FREE How is the state budget shaping up for youth and adults with I/DD and Autism?
April- Date TBD Getting Youth Ready to Work! - FREE
Massachusetts Rehabilitation Commission and the Federation for Children with Special Needs will talk about the federal mandate – Work Innovation Opportunity Act (WIOA) and their partnership in Massachusetts. Discover the types of programs and support that is offered for transition age students and youth. What can parents do to help make work a reality for their family members?
The Arc of Massachusetts
News from the chapters of The Arc
The Arc of South Norfolk: community partners baking and building together By Susan Kagan
The Arc of South Norfolk’s Family Autism Center (FAC) has been offering cooking and baking classes with a talented local pastry chef for the last two years. The partnership developed between Chef Ambreen Hasan and the Director of the Family Autism Center a few years ago and has since flourished. The Family Autism Center works directly with hundreds of individuals with autism spectrum disorders and was created in 1996 by a group of parents. In addition to advocacy, supports and services, FAC provides fun, recreational and social opportunities for families of young children with autism for whom there has traditionally been a lack of access to community based social opportunities. In December, FAC co-hosted a Gingerbread House Decorating event for families, along with Chef Hasan and her daughters. Fifteen families,
who all have children on the autism spectrum, enjoyed a festive evening of constructing and decorating gingerbread houses. Parents, siblings, volunteers, and, the children we serve through FAC participated in a design competition that was challenging and fun for FAC families enjoy decorating small gingerbread houses all! Hasan has provided cooking and baking classes in New York and worked under as a volunteer here at The Arc of famous New York chefs before South Norfolk in Westwood and is relocating to Westwood with her continuing to offer her talents and family. Chef Hasan and her daughpassion for baking through new ters volunteered for the day of the events and activities at The Arc of Gingerbread House event-and, South Norfolk. have since offered to volunteer at Ambreen Hasan is Head Pastry Chef other events. In 2018, we will build at Westwood’s Bibi Café and Bakupon this promising local partnerery, owned by Westwood resident ship to offer creative and educaFataneh Dowlatashahi. She studied tional opportunities to our families at the French Culinary Institute and individuals.
Michael Bloom becomes COO of LifeLinks, Inc. LifeLinks, Inc. recently announced A. Michael Bloom, MA, MS, FAAIDD, as the Chief Operating Officer for Michael Bloom the organization after serving as the agency’s Director of Strategy & Innovation.
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During his tenure he spearheaded new programs such as the Memory Café to provide monthly therapeutic activities in the Greater Lowell community dealing with Alzheimer’s and Dementia. Michael is a Fellow of the American Association on Intellectual and Developmental Disabilities and has an MA in Social Policy from Brandeis University and an MS in Psychology
from Villanova University. He is the author of The Accidental Caregiver’s Survival Guide: Your Roadmap to Caregiving Without Regret. As a highly-sought-after speaker and trainer, Michael has energized and inspired groups of caregivers throughout New England. Most recently, Michael was a featured speaker at The National Lifespan Respite Conference held in Huntsville, Alabama in October.
News from the chapters of The Arc
The United Arc Gallery opens at Greenfield Savings Bank spaces. “Many artists never have the opportunity to display their work,” he said. “I believe we need to do what we can to make that happen.”
Greenfield Savings Bank president John Howland hugs one of the artists
The United Arc Gallery was on display at Greenfield Savings Bank through December, Each artist’s work was accompanied by a brief bio about their interests and accomplishments.
On Thursday, November 30, 2017, Greenfield Savings Bank held an opening reception for a new art exhibit called “The United Arc Gallery” in the lobby of the GSB Main Office.
As a local bank, Greenfield Savings Bank is a strong supporter of the arts and regularly provides display space for works by local artists in the
The art exhibit consisted of a collection of works of art by artists who receive services from The United Arc. The pieces in the exhibit were purchased by the bank during The United Arc’s Annual Gala & Auction in September. The reception was attended by the artists, employees of Greenfield Savings Bank, members of The United Arc Board of Directors, The United Arc staff, and members of the public. In his opening remarks, John Howland, the President and CEO of Greenfield Savings Bank, talked about the importance of public art
Mark proudly points to his artwork
lobbies of the bank offices. GSB is a leader in supporting area community programs and non-profits, such as The United Arc.
Transition Conference 2017 continued from p. 19
Organizing for Change; Autism Support Center of the Northeast Arc; EMARC; Federation for Children with Special Needs; Massachusetts Advocates for Children; Massachusetts Developmental Disabilities Council; HMEA; The Arc of Greater Haverhill-Newburyport; The Arc of Greater Brockton;
Christine Shaw, PhD; Merrimack College; and Kathy Kelly! We are already beginning to make plans for the next Transition Conference, which will take place in 2019. Watch The Arc’s website as well as future issues of Advocate for information.
The Arc of Massachusetts
News from the chapters of The Arc
Successful Daly living skills By Robin Ellington, CLASS / The Arc of Greater Lawrence
Before joining CLASS’s Adult Family Care (AFC) program in 2015, Linda Daly had a lot of stress in her life. She was unemployed, living on a very tight budget in her own apartment, and cared full time for her adult son, Andrew, who was born with Down syndrome.
qualified caregivers and depending on the level of care needed. The caregiver receives in-home supports and training, visits by a care manager and registered nurse for the individual being cared for, and respite care up to 14 days per year.
“At the time, caring for Andrew “Andrew has always depended on me,” was very stressful for her, but now Linda says. “It was becoming more and she looks so much calmer, happier more difficult finding work and I had to because she can manage what she do something.” needs to do,” Bethsabe says. She heard about the AFC program, so she called. “She didn’t believe it, the support and services we offer,” says her Care Manager Bethsabe Cabrera. “It’s easy to be enrolled, but she was anxious at every step, always in a state of disbelief at the support and benefits of our program. She felt she didn’t deserve it.” CLASS’s AFC staff recently celebrated when their 105th family joined the program. The staff coordinates the MassHealth paperwork with the family, including stipend payments for
In the spring, Doug Rasala, RN, the CLASS AFC nurse, detected a health anomaly with Andrew during his monthly in-home visit with Bethsabe. “Doug took Andy’s vitals as usual,” Linda says, “but he noted Andy’s blood pressure was higher. The following month it was still elevated, so I contacted Andrew’s doctor with my concerns.” As recommended by his physician, Linda changed Andrew’s diet. “Cold-cut sandwiches and pickles, I now understand, are high in sodium,”
Doug Rasala, RN, takes Andrew’s vitals during a monthly CLASS AFC in-home visit.
she says. “Increasing Andrew’s water intake also helped.” Andrew’s annual physical in late August showed normal blood pressure. “I have peace of mind and can accept that this is the part of my life I can enjoy,” Linda says. “Now I can plan ahead and say how things are going to be. It’s an incredible feeling I haven’t had in a long time. I don’t have anxiety; I catch up with people and I get to go out to lunch. I get to laugh. “But one thing hasn’t changed,” she says, smiling. “I’m still Andrew’s mother.”
Minute Man Arc Teams Up with Quiet Logistics with donors giving their time, talent or treasure. One local company, Quiet Logistics (QL), is going well beyond conventional giving practices by hiring 30 people with disabilities through Minute Man Arc’s Employment Program. Minute Man Arc client Morgan Gallagher folds boxes for Quiet Logistics fulfillment.
Support for people with intellectual disabilities comes in many forms
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The relationship between Minute Man Arc and QL began with a simple introduction by Senator
James Eldridge. What followed was the creation of a small work crew comprised of a few individuals with developmental disabilities who folded specialized boxes for mailing high-end products. Fast forward six years; today there is a growing team of nearly three dozen individuals who take great pride in their work at QL. Just like anyone else, these workers enjoy the continued on page 26
News from the chapters of The Arc
A Family Support success story taken full advantage of the support offered by the Center: assistance in accessing community supports, leadership training opportunities, case management, and social recreational opportunities for CeCe and her family.
CeCe and family
Cyira Gillard is a 16-year-old girl lives with her mother, Carmella Lassegue, a single parent, and her 19-year-old sister in Brockton. CeCe loves puzzles, coloring, watching TV, blowing bubbles, listening to music, riding her bike, and playing games on her tablet. She also has significant cognitive disabilities and medical problems, including epilepsy, cerebral palsy, attention deficit hyperactivity disorder, and Landau Kleffner Syndrome. Accessing the support her daughter needs to learn, play, and thrive has been a great challenge for her mother. Because of CeCe’s medical needs, her mother has not been able to work. Keeping a roof over their heads has at times been nearly impossible. However, the family’s resilience and determination has kept them moving ahead, and the Brockton Area Arc Family Support Center is proud to be their partner! During the past seven years, the family has
CeCe participates in BAArc’s Outof-School-Time Programs: the ArcED After School Program, the Sunday Recreation Program and Vacation Camps. While CeCe’s medical and behavioral challenges have made it impossible for her to access other recreation programs, her experience in the BAArc programs has been successful. We provide 1:1 support so that she can participate meaningfully in a variety of activities such as Drums Alive, yoga, swimming, dance classes, and arts and crafts. Staff who know her well make sure that she has opportunities to engage in the activities with support, but also to move at her own pace. We also provide transportation for her, because her mother does not have a car. Without this kind of individualized support, CeCe would not be able to participate at all. The recreation programs provide much needed respite for Ms. Lassegue while CeCe has a fun place to call her own! The Family Support Center has supported the family in many other ways. Due to financial setbacks, the family was recently homeless. With the help of the Family Support Coordinator,
Ms. Lassegue’s challenge to find permanent affordable housing is being resolved. The Coordinator has been an effective advocate and a steady support during very stressful periods. CeCe’s big sister has also benefited from the support offered by the Brockton Area Arc Family Support Center. Five years ago, the Family Support Coordinator arranged for CeCe to attend a summer camp for five days; her sister Jamaicia was also able to go to the camp as a volunteer counselor. For both girls this was the first time that they had been away from home overnight. Because of this experience working with children with a range of disabilities, Jamaicia decided to pursue a career in human services. As a high school senior, she wrote and produced a short documentary about her sister and the supports she gets from the Brockton Area Arc. Now a student at Massasoit Community College, Jamaicia is majoring in Special Education. Ms. Lassegue, too, has new goals for herself. She would like to create a clothing line for children with disabilities. She also has participated in leadership training so that she can effectively advocate for herself, her daughter, and other people with disabilities. She credits the Brockton Area Arc with the support she has needed to move forward despite great challenges.
The Arc of Massachusetts
News from the chapters of The Arc
125 + years and going strong! LifeLinks, Inc. believes in celebrating success. We are unbelievably successful in having one group home with 10 staff members, whose longevity with the agency totals an amazing over 125 years of experience, working under one roof. That rare and very special home is located at 50 Cidalia Drive in Lowell, MA and the staff describes themselves as “family”. When you look up the definition of family, it’s defined as a unit of love. Cidalia Drive in Lowell, MA is like that unit of love. You feel it the moment you walk in. Those 10 staff members know that family isn’t always blood; it’s the people in your life who want you in theirs the ones whom you work with, side-by-side every day. This truly amazing feat must be celebrated and what better way to celebrate than to bring the spotlight on this amazing Group Home. As I sat and chatted with the staff at this particular home I witnessed the immediate camaraderie; the sense of deep respect for each other. They shared ideas, had an open conversation about what really works. A sense of pride which defines what makes a happy home is what I felt. It didn’t take long to sense the fact that this house, along with those working in it, was a joyful place. It was evident from the way it was organized and from listening to the staff the staff, that this was an awesome place with a reputation beyond reproach. When I asked Angie Otieno, Director of
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Group Homes how does this work? She answered, “I credit the staff.” “The individuals respond to consistency, longevity and routine. This makes things go easier because of the continuity in staff. Cidalia very infrequently has a vacancy and word is out if there ever is one, everyone wants to work there!”
The Cidalia Drive staff
When asking the staff why this works for them, they chimed in with “you don’t find it often, it’s rare.” Peter Kimani, who has worked at the home for 13 years, described himself “as the most positive person at Cidalia. It’s a blessing and my goal is to make people happy.” Grace Kiangonyo, with 16 years says “togetherness, teamwork is why it works.” She also claims to be the “mother and feeds the group big breakfasts.” Mary Delfina Gichuhi with 10 years feels that introducing something new and hoping it works, i.e. bringing her pet fish from home while she was on vacation and now has found a permanent home at Cidalia keeps things moving along.” While they say laughter is the best medicine, it is surely evident at Cidalia. Thuy, Jason and Danny, the three men who call Cidalia home, are happy and content and the
challenges are few. Looking ahead we know the house needs to be equipped to address the physical needs that come with aging and the staff needs to be ready to support the men for what lies ahead. We believe this group will face whatever needs to be done with a broader perspective and even broader smiles and will continue to rely on each other for support. These are yet another group of exceptional members of the LifeLinks’ family and this is what makes LifeLinks so great. We work to serve and live the “LifeLinks’ Way.” The Cidalia staff family: John Othello Nyan – 19 years Grace Kiangonyo – 16 years Antony Gikaru – 6 years Peter Kimani – 16 years Karimi Anthony – 13 years Edwin Kiptoo – 12 years Faith Waithaka Mweru – 10 years Winfred Hill – 17 years MaryDelfina Gichuhi - 10 years John Mbuthia – 10 years
News from the chapters of The Arc
Dynamic Duo Kimberly and Katye Mozo spread joy and cheer around the world By Sonja Stewart, Family Support Manager
Katye is bottom left, Kim is top right
Sisters Kimberly and Katye Mozo are connected to Berkshire County Arc (BCArc) through the Adult Family Care Program. They have experienced many serious medical challenges, as well extensive hospital stays. Through all of these hardships, these young women have still found time to give back to their community. Together they have formed K&K Pill Bottles through the funding
of a GoFundMe page; where they decorate pill bottles and fill them with surprises to give to others who suffer from chronic illnesses. These bottles have been sent all over the world and received by others who are experiencing long-term health concerns and have found relief in this kind gesture. In addition to this, they have purchased an array of toys that were given to the children in the pediatric ward of Baystate Children’s Hospital.
always made my stay as good as it could get and I really appreciate that.”
Speaking about their journey and how they have been inspired to pay it forward, the sisters have stated, “Being in the hospital is hard and depressing. Every time my sister has been in the hospital we are all surrounded by the nicest people.” And, “I have been in the hospital multiple times in the Baystate Children’s Hospital, and they have
Note: After the writing of this article, we are sad to report that Katye Mozo has passed away. Her family wishes to celebrate her life and the incredible contributions and she and her sister, Kim, have made over the years. The family is keeping her memory alive with a recent donation of toys this past Christmas Eve to the pediatric ward at Baystate Medical Center.
The thoughtfulness and motivation to pay it forward has not only aided others who are undergoing difficult experiences, but also inspired them to persevere and stay positive. At the 2017 BCArc Annual Meeting this past November, they were awarded the 2017 BCArc Citizenship Award for their efforts.
Minute Man Arc Teams Up with Quiet Logistics continued from p. 23 camaraderie of coworkers, a clean and safe work environment, and a weekly paycheck. “Quiet Logistics has a fantastic team including more than 30 workers with disabilities from Minute Man Arc,” said Brian Lemerise, President of Quiet Logistics. “We believe we can empower these workers to live better and richer lives.” “The relationship between Quiet Logistics and Minute Man Arc shows what a true collaborative partnership can produce in terms of benefits to both entities,” said Jean Goldsberry,
CEO of Minute Man Arc. In early November, QL opened its doors in Devens, Massachusetts to over 75 local businesses and community members to witness firsthand how mutual interests can be met by employing people with disabilities. Through tours and demonstrations, the power of collaboration was clearly visible. This community partnership is changing lives and perceptions of what is possible, both for companies like Quiet Logistics and for Minute Man Arc clients. Minute Man Arc supports more than
800 children and adults with disabilities throughout eastern Massachusetts. Quiet Logistics is a forward-thinking fulfillment provider specializing in innovative brands and e-Commerce solutions.
Quiet Logistics President Brian Lemerise (right) leads business owners and community members on a tour of QL’s fulfillment center.
The Arc of Massachusetts
News from the chapters of The Arc
The Possibilities are Endless By Saera Hanlon, The United Arc
Meet Joe While Joe was still a young child his parents, Rita and Joseph, sought help for him from The United Arc, because he needed some extra support. With encouragement from his grandmother, Joe became a Cub Scout and later a Boy Scout. Today, Joe describes himself as a “Jack of all trades and a scholar of all studies.” He is a photographer, activist, scholar, and historian. Joe also works several days a week at Riff’s North in Turners Falls. He mops the floors and helps prepare the restaurant for the day. Joe and his family are a vibrant part of The United Arc and their community.
He is a photographer When Joe was six years old, he began learning photography from his grandfather. Watching his grandfather’s construction company, J.A. Parzych Excavating, demolish an old building in Northampton inspired Joe to start his own photography career. He soon introduced himself to The Montague Reporter, starting a professional relationship that continues today. Joe enjoys developing computerenhanced photography and drawing comic strips. He displayed his art at The United Arc Athol Open House in June 2017, and donated two of his photos to The United Arc 2017 Annual Gala & Auction!
He is an activist In 2008, The Greenfield High School held a forum introducing a
Achieve with us.
new state law to address bullying. Governor Baker and other state officials attended. Many parents stood up and spoke, but Joe was the only student who did. He stood up in front of a full auditorium, and said, “Finally, we have passed a law and we have freedom to speak about bullying.” Joe has been bullied himself. He says “A lot of people get bullied and it increases dropping out of school and getting into trouble, and I encourage people not to let it get you down. I feel pretty good about the change around bullying and that it helps the self-esteem and encouragement for a face to keep smiling.” Joe still has the best friends who helped him get through those experiences.
He is a scholar and historian Joe loves to learn and he reads all genres of books. Leonardo da Vinci, Albert Einstein, Thomas Edison, and Nicolas Tesla are among his heroes. After high school, Joe’s passion for learning led him to take classes in liberal arts and computer science at Greenfield Community College. He also completed a six-week course at Greenfield and Montague Community TV, where he made a historical video about local senior citizens.
He is active in the community Joe enjoys a wide variety of hobbies such as Legos and drafting. He plays the blues on his guitar and his record collection dates back to
Joe at work
the 1940s. Joe is also very active in Friends in Common, a group sponsored by The United Arc for young people that holds dances and participates in community activities. As he stretches to continually redefine his full potential, Joe guides his life with a quote from the film Star Trek II: The Wrath of Khan. “I don’t believe in the no-win scenario,” the character Captain Kirk says, facing the supposedly impossible. “Risk is a business,” Joe observes.
Family Joe’s mother, Rita was one of the original parents in The United Arc’s Positive Parenting Program. It began in 1985 and remains the only one of its kind in Massachusetts. One of the first activities was swimming at the YMCA. Rita, Joseph and their children Katie and Joe continue to participate in The United Arc activities such as the Annual Picnic and The United Arc Open Houses. Rita is still part of our lively Chat & Knit group.
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Achieve with us. SENSational Story Time with a yoga twist
One of the many families enjoying the interactive programing around the book “There Was an Old Lady Who Swallowed Some Leaves!”
with ASD (autism spectrum disorder) love and embrace books and become more engaged in reading by making the stories interactive and alive. All ages and abilities are welcome and staff is available to assist participants and provide support. This family-focused activity is fun and therapeutic and offers opportunities for children with ASD and their family members to share an experience that uniquely fosters literacy and physical and emotional wellness.
The Arc of the South Shore has partnered with The Paul Pratt Memorial Library and The Little Bee Yoga Company to offer a monthly program series that includes story time, the making of a sensory/ adaptive book kit to enhance the experience, and an interactive yoga class based upon the theme. The program’s goal is to help children
The Paul Pratt Memorial Library’s grant initiative, “Equal Access for All,” has prioritized library services for people with ASD. The commitment to develop collections and programs that meet the needs of children with autism and their families is integral to the library’s mission of serving all citizens.” The Arc of the South Shore is looking to expand this program
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Our advertisers help support the mission of The Arc of Massachusetts. throughout the South Shore. For information about the benefits of yoga for children with autism, visit https://yogainternational.com/ article/view/yoga-generates-hugebenefits-for-children-with-autism
The Arc of Massachusetts