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Advocate Spring 2018

DDS House budget shows increases By Leo V. Sarkissian

On April 11, the House Ways and Means Committee’s budget was released. The Committee provided much-needed increases over the Governor’s budget in the line items for Family Support, Autism Children’s Waiver, and Day and Employment services. We appreciated the support of many representatives in making this happen, and our summer issue will list those

supporters. Special thanks to Ways and Means Chair Jeffrey Sanchez, Speaker Robert DeLeo, and Rep. Denise Garlick for their efforts. The Arc’s Government Affairs team worked feverishly at the State House to increase funding for family and adult supports. In conjunction with the Association of Developmental Disability Providers

The Arc’s annual Gala raises funds to support mission and programs

(ADDP), we obtained lead legislative sponsors who filed budget amendments to fully fund employment needs, as well as unmet family needs at home and in residential services. The Arc has shared details about the full funding needed on our website: thearcofmass.org/StateHouse/ Budget. In the end, the House did continued on page 14

Inside this issue... Article

Page

The Friendship Corner..................6 Becker Center Grants.................10 Government Affairs....................14 Education and Training..............20 SUPPORTbrokers.......................21 News from the Chapters............22

Celebrating the achievers: (L-R) Leo Sarkissian, Isaiah Lombardo, Helen Coppenrath, Riley Easley, Bruce Butler, Jonathan Huggon, Tess Keijser, and Tracy Atkinson

continued on page 8

Achieve with us.


Published by The Arc of Massachusetts 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

DIRECTORS

Subhadeep Basu Michael Maguire Jim Calvin John Mallin Martin Courage Geoffrey Misilo Katherine Craven Sean Morrissey Kristin M. Hilf John Nadworny Susan Lodemore

STEERING COMMITTEE

Janet Sweeney Rico, Chair Jim Buss James Ragazzo Christopher Fox Renald Raphael Karen Mariscal Hillary Dunn Stanisz Barbara Pilarcik Mary Valachovic Leo Sarkissian, Ex officio Scott Borchardt, Ex officio Melanie McLaughlin, Ex officio

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 Memoriam: Andrew J. Lawson We celebrate the life and mourn the passing of Andrew J. Lawson, who passed away on February 8 at the age of 27, following a courageous struggle with cancer. Andrew, the son of James and Regina Lawson, was born with Down syndrome, but he was defined by what he achieved and who he was, not by a disability. That was reflected in the many ways he was included in the Norwell community. He excelled both in sports and in the classroom. He was a star athlete at Norwell High School, where he was a member of both the Andrew gets ready to shoot at Play on basketball and soccer teams and also the Parquet participated in track. In addition, he was a regular participant in Special Olympics. Following graduation, Andrew attended a vocational training program and worked a number of jobs. He also served as an assistant coach on Norwell’s basketball and soccer teams. An avid sports fan, he regularly participated in The Arc of Massachusetts’ annual Play on the Parquet event at TD Garden. In 2017, he and his family were inducted into the Special Olympics MA Hall of Fame. The Arc’s Executive Director, Leo Sarkissian, commented: “What I didn’t know about Andrew was the impact he had within his community. Hundreds of people attended his wake on Valentines’ day evening. There were scores of young people….In the age of Twitter and Instagram, they waited in line for up two hours. The young people included those who were in Andrew’s high school class and some who had played on the basketball team with him, as he had been included there too. A young man ahead of us in line who had played with him in 2008, said “he touched so many lives.”

Katerina Daley Development & Digital Media Associate

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In Memoriam: Alexander Tener Kerkam Alexander Kerkam passed away on March 31 due to complications from a stroke and pneumonia. The son of James G. Kerkam and Roberta T. Kerkam of Duxbury, Alec was 47 years old. Born in Washington, DC, he was diagnosed at the age of one with severe and profound mental retardation. In 1972, he was one of the first students of The New Hope School in Warrenton, VA, which was founded by his parents. Initially a pre-school program, the school became the basis for the Fauquier County Public Schools’ program for the intellectually disabled. Over the next several years, as the family moved around Virginia and the DC area, Alec was enrolled in other programs which often failed to meet the special education standard of “maximum feasible benefit.” In frustration, his parents placed him privately at the Keystone City Residences in Scranton,PA, an educational and residential program where Alec learned behavioral modification techniques to manage his aggression. This placement became the focus of a law suit again the District of Columbia. At issue was the rights of parents to be reimbursed for educational expenses when the local school district fails to meet the educational needs of their special needs child. The case was tried in the lower federal court and twice before the US Court of Appeals. Various bench rulings and opinions made it possible for a similar case to be brought successfully before the US Supreme Court.

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Following a move to Massachusetts in 1990, Alec completed his education in 1994, through the Concord Public Schools. With the support of the late Senator Edward Kennedy and Senator John Kerry, Alec also received residential services. While in the Concord area, Alec attended day workshop and day habilitation programs. After his parents retired and moved to Duxbury in 2001, Alec was able to move to Whitman, MA to be near them. He lived in communitybased housing with 3 housemates, and during the day he attended day habilitation programs in Easton

and Weymouth. Inspired by Alec, his father, Jim Kerkam, has been a Alex Kerkam passionate advocate not only for his son but for all people with intellectual and developmental disabilities. His involvement with The Arc as a member and officer of The Arc’s Board of Directors throughout much of the 1990’s became an important focal point of his activity.

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Don’t let our Achievers be the exception By Katrin Aback

On April 25, The Arc of Massachusetts recognized six people for their accomplishments and perseverance at our Expect Success: Celebrating Achievers Gala. These “achievers” are inspirational and are terrific examples of what people with intellectual and developmental disabilities, including autism, are capable of. As exceptional as these six people are, we should not think of them as the exception. Bruce, Helen, Isaiah, Jonathan, Riley, and Tess represent thousands of people with disabilities in Massachusetts who are able to make their dreams a reality, because they receive the support, guidance, and services to do so. Unfortunately, these supports and services are under siege. We face the tremendous – and frightening – possibility that there will be cuts to funding and changes to how resources are allocated in the very near future, primarily due to changes at the national level. Families and their ability to advocate for services and supports for their loved one play a key part in each of our achievers’ stories. Supports and services are critical to taking the individual’s and their family’s desires to achieve from the realm of vision to accomplishment, and advocacy is essential to ensuring that the training, education, transportation, employment, and daily services are available. And just as personal

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advocacy makes things happen for family members, advocacy at the state and federal level ensures that people with disabilities will have access to services. By contacting your legislators, participating in advocacy days on Beacon Hill, and supporting The Arc of Massachusetts, you are making a difference. These activities are more important than ever.

but nationally, too. We can lead a larger delegation of self-advocates, family members, and professionals to Washington, DC in April to speak with members of Congress and their staff members about funding for disability. We can collect and share stories that show the impact of adequate services with state legislators to give numbers on a page a real face, a real name.

We can guide people with Everything is at risk – from early disabilities and their families intervention to Adult Family/ through the complicated eligibility Foster Care to autism supports to process by providing information, employment. In Massachusetts, handbooks, and webinars. Medicaid makes programs run continued on page 5 by the Department of Developmental Services and The Attainable MassHealth Savings Plan® possible. Save money without impacting To get the help needed requires advocacy and remaining vocal. And with your support, we can do that. Your contribution will make it possible for The Arc of Massachusetts to keep up the fight not only on the state level,

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The Arc of Massachusetts 4/12/18

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Jim Calvin joins The Arc of Massachusetts Board Jim Calvin, the newest member of The Arc of Massachusetts’ Board of Directors, brings a very personal perspective to the work of the organization. As a sibling, he has experienced intellectual disability first-hand. Originally from California, Jim and his family moved to Massachusetts when he was a youngster, and he grew up in Lexington. He was close to his sister, Paige, and he and his other siblings have remained connected to her in a very hands-on way. Paige has her own home within the Specialized Housing community in Brookline. Along with another sister and brother, Jim not only visits Paige on a regular basis but all of them share responsibility for assuring her life runs smoothly. Jim worked in Singapore and Hong Kong from

2011 to 2016, and is glad to be back so he is closer to Paige and his siblings, who all still live near her. While his family always had very positive feelings about The Arc, his own connection originated with Tracy Atkinson and was enhanced by his family’s long friendships with members and former members of The Arc board: Evelyn and Bob Hausslein’s son Tom is a resident of the same Specialized Housing community where Paige lives. And Jim and family have, for many years, looked to John Nadworny for financial advice for Paige and the family. Jim said that Evelyn’s and John’s commitment and enthusiasm made his decision easy. “I’ve been careful with my commitments since returning

Jim Calvin

from Asia--this is the only board I currently serve on,” Jim says. “For me this is personal, and I look forward to contributing to The Arc in its mission in any way I can.” Jim, a graduate of the Rochester Institute of Technology, is a partner with Deloitte in Boston.

Don’t let our Achievers be the exception continued from p. 4

We can teach medical students and professionals the essential skills they will need to enhance the healthcare of people with autism and I/DD, to have the confidence and an interest in more than a diagnosis. We can continue to fight against cutting and capping Medicaid. There is no time limit on the need for disability services; they have to be available for the entire lifespan. We can – and will – do all of these things. But not without you.

Achieve with us.

Make a real difference right now by taking two simple steps. First, give to The Arc of Massachusetts and support our advocacy, education, and outreach. Then, sign up for our emails and keep informed on how you can be involved. Just visit www.arcmass.org and click on the subscribe button. Can you give today so we can do all these things and more? Only with your commitment and generosity will people with intellectual and developmental disabilities get the services and

supports that they need and deserve. The stories of our six achievers are inspirational and serve as touchstones. With grit, determination, and services and supports, they are wonderful examples of what can be accomplished. Don’t let them be the exception. You can help all people with intellectual and developmental disabilities live an exceptional life. Please give today at www.arcmass. org/donate.

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Friendship Corner

How do you ensure that your organization truly values friendships between people with and without disabilities? By Jim Ross and Mary Ann Brennen

Pathways to Friendship (Pathways) is an initiative under The Arc of Massachusetts’ Widening the Circle project. Pathways helps provider organizations support the development of friendships between the people they support and people in their communities who are not paid to be with them, not related, and not also receiving services. Although Pathways partners have had measureable success in connecting folks, progress has been slower than most partners would like. One of the most persistent problems has been the large amount of staff turnover at both direct support and program manager levels. This “churn” adversely impacts many parts of individuals’ lives, but is particularly problematic when we’re trying to connect people to others in their community in deep and meaningful ways. To help mitigate this problem, it is important for organizations to deeply embed the expectation of supporting friendships throughout the organization. Our Pathways partners have been implementing activities that help them keep their eyes on the prize, even when staffing issues threaten to distract them. Here are some things our Pathways partners have shared that you may want to introduce or expand in your organization:

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Personnel Related There is a role for everyone in an organization to help facilitate friendships between people with and without disabilities. Some organizations are emphasizing this role at multiple stages of the work of both direct support professionals and program manager level staff. Some things you can do: • Add questions/discussions related to friendships/relationships/valued roles/community connection/etc. at the job interview stage. • Draft job descriptions that clearly indicate facilitating friendships between people with and without disabilities as a job duty. This expectation should be near the beginning of the document to emphasize its importance. •C  onduct regular (at least annual) staff performance evaluations that measure -- among other things -- staff success at facilitating friendships as outlined in their job description. •P  rovide orientation/training around the importance of friendships in the lives of the people we support and practical information on how staff can make it happen. • Send staff to outside trainings that address friendship/relationship issues, including valued roles.

Follow up with staff to see what they learned and how you can help them to operationalize what they learned. • Include a dedicated segment of all staff meeting -- DSP and management—for sharing progress/obstacles/resources related to facilitating friendships. • Consider developing a Community Connector position(s) within your organization, utilizing a person who is good at “schmoozing” and who is well connected in the communities in which the people you serve live. This may be especially helpful for organizations in which most staff members do not live in or even near the communities in which they work. • Initiate ways to recognize and reward staff members who are successful at facilitating connections.

Tools A number of tools are available that organizations can adopt as a regular part of their services that help pay attention to friendships. These include: • Interest Inventories/Surveys: Finding out what people you support like/want to do is important if you want to link them continued on page 7

The Arc of Massachusetts


Friendship Corner How do you ensure that your organization truly values friendships between people with and without disabilities? continued from p. 6

to groups of community people with similar interests. Friendships can often be developed through these membership connections. It is also helpful to survey your staff as well, finding out what skills/interests they have and where they are connected in the community. Staff connections may be good leads for the people you support. • Person Centered Planning is a vision-building and future-planning tool which discovers the kind of life a person desires, creates a plan for how it may be achieved, and ensures access to needed supports and services. The focus is always on the vision of what the person would like to be and do. The planning focuses on the strengths of the person rather than his/her weaknesses. It can be very useful to focus attention on relationships and friendships. For more information go to http:// thearcofmass.org/programs/ supportbrokers/person-centeredplanning/. • Community Mapping is a way to discover the places in the community where people with and without disabilities can connect. Some of this can be done through on-line searches and discussions with people who are familiar with the resources in a particular community. An effective (and fun) way of mapping is to send teams of staff (consider including people

Achieve with us.

Planning for Friendships

served, too) to walk or drive through neighborhoods and list places where people may be able to connect well with others.

Organizational Actions Paying attention to friendships at the highest level of an organization can set an example for the entire organization. Executive Directors/ CEOs, Program Directors, and Board members can do many things: • Mission Statements should lead with strong language supporting relationships of the people served by the organization, including friendships with people who are not paid, not related and not also receiving services. • Organization reports, brochures, office décor, etc. should emphasize friendships, inclusion, community connections, valued roles, etc. Too often we present

to the public (and ourselves) images of the people we serve all alone (lonely!) or in groups of just people with disabilities. This sends a message that reinforces a negative public image of people with disabilities. • Organization policies should consistently and clearly support friendships. • Board membership should include people with and without disabilities and efforts should be made to ensure all work well -- and socialize – together. • The organization could establish a Social Inclusion Policy Work Group that involves people with and without disabilities, including community members. • Schedule a Planning day that concentrates on how your continued on page 14

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The Arc’s annual Gala raises funds to support mission and programs continued from p. 1

The Butler Family A hopeful bidder raises her bid number

On Wednesday, April 25, The Arc of Massachusetts held our 2018 gala, Expect Success: Celebrating Achievers. Over the course of the exciting evening, we recognized six outstanding Achievers who have excelled in the classroom, the workforce, the arts, and business. Our six Achievers – Bruce, Helen, Riley, Jonathan, Tess, and Isaiah – range in age from 14 to 67; represent various intellectual and developmental disabilities; and identify themselves as musicians, artists, public speakers, small business owners, and more. They have achieved success and personal fulfillment despite challenges, never compromising on the high expectations they set for themselves.

Julie Heffernan and Scott Lentine

More than 330 attendees were present for the festivities. The Arc is deeply grateful to our sponsors, whose generosity made this event such a success. We are especially grateful to State Street Corporation, Harvard Pilgrim Health Care, PwC, and NTT Data. Thank you to all who joined us in celebrating these Achievers, and to our sponsors and supporters who made this all possible! The Arc’s Board President, Tracy Atkinson

A large crowd fills the Ballroom

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Wilbens Vincent, Isaiah and Angela Lombardo

The Arc of Massachusetts


The Coppenrath Family with music tutor Eric Hewitt and the Higashi School’s Rachel Azrak

Tess Keijser and Family

Henry and Evelyne Milorin

Auctioneer Tom Weitbrecht

Mike Kardok, Scott and Julie Borchardt

Tegan Severance, Arwen Severance, and Jenn Cullen

Emcee Chris McKinnon, WBZ4 morning anchor

Paula, Riley, and Matt Easley

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The Huggon Family

Mary Lou Maloney, Diane Iagulli, and Bill Allan

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Becker Center for Advocacy

Tell your story through family experiences In the spring of 1998, parent and educator Glenn Gabbard (now Coordinator of the MA Inclusive Concurrent Enrollment Initiative at the Executive Office of Education for the Commonwealth of Massachusetts) published “Family Experiences: Ways to Lead Change Through Telling Your Story” in the National Early Childhood Technical Assistance Center’s Early Childhood Bulletin. It remains one of the best guides on how to use personal stories of disability as tools for advocacy. We offer you an abridged version of the article below.(You can find the full article at http://www.nectac. org/~pdfs/pubs/famexp.pdf.)

Whether it be to pediatricians, neighbors, legislators, therapists, conference audiences, teachers, administrators, or peers, parents of children with disabilities are frequently asked to tell all or part of their family’s life story. Stories help us connect. Stories also reveal the details, the impact of systems on the daily lives of families and children. They are a powerful way to develop relationships among parents and professionals. These stories are what connect us to our work and to each other in meaningful ways. They deepen our understanding of individual and shared experiences. Stories often spur changes in systems that seem impossible to understand. Parents tell their stories in many situations, sometimes when they are invited, others when they discover the opportunity informally. They speak in formal settings, including parent trainings, professional development workshops,

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keynote speeches, or panels at conferences, legislative hearings, and school presentations to teachers and students. Telling their story can serve any number of purposes. It can turn grief and anger into constructive energy, share effective networks to programs, reinforce values to guide a family’s commitment to themselves and their children, influence public opinion by illustrating how policies affect families, help family members to feel less alone in efforts to make change, market key strengths of early intervention to legislators and other policy makers, share information that cannot be easily presented by charts or graphs with others who do not directly experience the situation, and raise awareness and promote sensitivity to the experience and knowledge that grows from a family’s experiences. The following paragraphs offer some important guidelines to consider when a story is to be told. The guidelines are grouped into three phases of storytelling: preparing what you have to say, presenting the story, and following up and assessing the impact of your story.

Preparing What You Have to Say It is important to think a bit in advance about who will hear your story. A little groundwork can help to make the story effective and help you be comfortable in telling it. Who is in the audience can help you decide which parts to emphasize and, more importantly, why continued on page 11

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Becker Center for Advocacy Tell your story through family experiences continued from p. 10 you are telling your story. Aspects can change depending on the audience: a story about a wonderful preschool program can emphasize the need for funding with a group of legislators considering the next year’s budget; to a group of preschool teachers, it can emphasize the importance of parent/teacher communication and collaboration. Whether the situation calls for your story to be thirty seconds or an hour long, stories should have a beginning, middle, and end. Engaging stories rely on a beginning that “hooks” the listener who then listens for details in the middle of the story, and awaits the punch line at the end. The beginning sets the stage, identifies the key characters and location, and gets the listener interested. The middle – where the plot thickens – adds details, examples, and interesting information necessary to understand the key ideas and people. The end ties things together and gives an idea of what can be learned from the story. Sometimes the theme/s can be stated directly; at other times, it is best to let the listeners draw their own conclusions.

Presenting the Story The way a story is told is often as important as the story itself. To be an effective storyteller you must have something to tell, someone to tell it to, and the ability to make yourself heard. Before you begin, take a few deep breaths and slowly scan the audience for familiar faces. Project your voice with confidence

Achieve with us.

and be sure to use a microphone however, you need to be aware with large audiences. (An aside: of the audience and their need to make sure you understand how understand your emotions and to use the audio-visual equipment your message. The last response and that pictures or slides are an you want from your audience is enhancement to, rather than a pity or confusion. If you start to cry, distraction from, your presentapause long enough to take three tion.) Remember to speak calmly or four deep breaths, and then go and slowly – just a bit slower than on. Sometimes it is useful to explain normal conversational style; good to the audience that you need to listeners require some processing collect yourself and that you really time. Establish clear and frequent want them as much to understand eye contact with your audience and what you have to tell them as well look at familiar or sympathetic faces as how emotionally difficult it is for in different parts of the audience, you. It may be helpful for you to because it makes all of the audience mentally focus on something that feel included. It may be helpful to makes you laugh or to squeeze use a bit of humor, but avoid maka small rubber toy that fits in the continued on page 13 ing any one group (profesALL PEOPLE WITH DISABILITIES – sional or parLIFELONG AND AGE-RELATED – ent) the butt of SHOULD HAVE THE MEANS TO LIVE jokes. Teasing HEALTHY AND WELL and sarcasm PLAN, a nonprofit organization, operates are not a good special needs pooled trusts. Professional idea – one financial managers and social worker staff help person’s idea individuals: of a sarcastic • Preserve financial assets remark might • Protect public benefits • Access personalized guidance with be another’s the use of their funds insult. For even the most experienced speakers, telling a story that reveals a personal or emotional time can be difficult. Crying is, of course, perfectly acceptable;

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Becker Center for Advocacy

The Becker Family Trust announces major grants On March 30, grants totaling $925,000 were announced to 20 organizations serving people with intellectual and developmental disabilities in the Commonwealth of Massachusetts. The program is administered in conjunction with The Arc of Massachusetts’ Becker Center for Advocacy. Alex Moschella, Trust Attorney, chaired the session and he was joined by Cynthia Haddad, a financial planner and past board member of The Arc of Massachusetts. Both were Becker family friends. In opening remarks, Attorney Moschella noted how progressive

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parents, Dan and Angela were in raising their son Michael. He shared a story about a young adult with Down syndrome waiting outside a concert who had just put away an I-phone. In sharing pleasantries, the young man noted how he had just called for an Uber to get home. Alex noted, “if Michael was living today, that’s exactly what he would be doing -- phoning for an Uber or ordering a coffee with his smart phone.” Cynthia Haddad commented about Dan Becker, “What a giant he was in the disability community; a pioneering parent, tireless advocate and a 50th Anniversary honoree at The Arc.” She noted Angela being the force behind Dan and Mike both, making sure they did fun things too while planning for the future. Cynthia went on to say, “They wanted to make sure there was enough money for Mike to have a good life. When Michael died much too soon, they decided to

leave a legacy for other families and other ‘Mikes’.” The grants will support activities ranging from policy improvement to concrete services on the ground. Grants awarded by The Becker Family Trust are for innovative, high impact projects benefiting individuals with intellectual and developmental disabilities for social inclusion, self-determination, employment, assistive technology and supported living. The grants are: • Advocates - $100,000 for Inclusion and Family caregiver support for persons with Autism, by increasing local business sensitivity to serving persons with autism (restaurants, shopping, etc.) with business “seal of approval” and development of “caregiver corps” • Beaverbrook Step - $100,000 for self-determination by reorganizing residential services to more person-centered living options • Center for Public Representation - $100,000 for self-determination and sustainable supported decision making project to increase personal decision making of those with disabilities (I/DD) • Disability Law Center - $100,000 for social inclusion, to study and modernize day habilitation services to further community membership • Massachusetts Advocates for Children - $100,000 for inclusion/ self-determination by broadening access to state colleges and comcontinued on page 13

The Arc of Massachusetts


Becker Center for Advocacy The Becker Family Trust announces major grants continued from p. 12

munity colleges through policy change and implementation of policy at higher education level • Massachusetts Sibling Support Network - $100,000 for selfdetermination and family caregiver support – sustainability for broader outreach to and impact upon siblings • The Arc of the South Shore $100,000 for inclusion, family caregiver support and individual growth, expanding self-funded autism support center • Amego - $50,000 self-determination/employment – concession or food trailer purchase and training of adults with autism

A number of grants ranging from $10,000 to $20,000 were awarded to the following: • UCP Berkshire County - To help 3 agencies implement assistive technology (AT)

• Haitian American Public Health Initiatives - Empowerment through Inclusive Culture and Arts • The Arc of Bristol County Self-Determination and AT

• Charles River Center - For self-determination advancing communication

• North Quabbin Citizen Advocacy - Expanding Citizen Advocates and Community Education

• Berkshire County Arc Self-Determination through assistive technology

• Vinfen - Inclusion through Community Relationship Builder

• Nonotuck Resource Associates Expanding shared living options • Shriver Clinical Services Addressing vision loss with AT

• CLASS Inc. - Employment, loom trade training

• W. Massachusetts Training Consortium - Expanding Interfaith Options • Minute Man Arc - Support Pathways to Friendships in Community

Tell your story through family experiences continued from p. 11 palm of your hand to relieve some of the tension. Whatever your method of stress reduction, avoid having someone “rescue” you by interrupting and interpreting what you mean. If you still have a message to convey, take the time to collect yourself and then go on.

Following Up Make sure you allow time at the end of your presentation for audience members to ask questions. Be comfortable saying that you don’t know an answer (but will gladly look into it), and know that you do not have to answer a personal question that hits a raw nerve. It is perfectly appropriate for you to say, “I find that question difficult for me and would really rather not answer

Achieve with us.

it. ”Understanding how listeners details and, sometimes, whether or heard your story is as important as not the story should be told at all. preparing and telling it. If possible, Similarly, if your older children are ask trusted colleagues or friends to asked to tell their stories themselves, listen to your presentation and to make sure they understand the imlet you know what they thought of portance of keeping details that they it. Listen carefully to their responsdeem private to themselves. Indeed, es, as they will help you develop it is their right to do so. your story and emphasize efSpecialized Housing, Inc. fective features. One last note to consider: as your children grow older and more independent, it is important to consult them about the story

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Government Affairs

Most priority bills of The Arc pass through committee The Arc has made progress in pushing our priority bills closer to the finish line. This year, we have many bills in front of Health Care Finance and/or Ways and Means. The advocacy for these bills has been a year-round effort but as we close into the end of the session, it is full steam ahead. Nicky’s Law is in review by the

Ways and Means Committee. If you haven’t reached out to ask your Senator or Representative to speak to Ways and Means members in support of the bill, please do so. We hope you will be thanking them soon for helping to pass the bill into law. The other bills positioned well this session are Operation House

Call (a medical student training bill), Police Training in Autism, Hospital Training (I/DD), Inclusive Concurrent Enrollment (college opportunities for people with I/ DD), Accessory Apartment Units (for disabled and elderly), and the Loan Reimbursement bill for Direct Care workers. There is still time to advocate for these bills.

How do you ensure that your organization truly values friendships between people with and without disabilities? continued from p. 7

organization can support friendships. Consider inviting an outside facilitator to such a gathering. • Establish an internal organizational communication network that includes sharing information/ resources/success stories related to friendships.

ISP & Related Actions Since everyone you support (probably) has an ISP and a staff record-keeping system, you can: • Pay close attention to friendships within the ISP process and document. We recommend that you include a number of relationship-related implementation strategies for goals throughout the ISP instead of drafting a stand-alone “Make a friend” goal. For more information please read

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“How to Use the ISP to Promote Social Inclusion and Friendships” at www.mass.gov/files/documents/2017/11/01/si-4-isp.pdf . • Establish a “Community Connection” section of the individual’s log book/progress notes.

Feel free to use any of these ideas that may be helpful to you. If you have additional ideas you can send them to Jim Ross at jbriii@comcast.net.

DDS House budget shows increases continued from p. 1

pass on the increases in the Ways and Means budget, approximately $2.3 Million over the Governor’s blueprint. We hope to obtain further assistance for constituents through the Senate Budget blueprint. Through education and advocacy, our legislative champions did step up on our issues and we appreciate their sponsorship

-- please look for the summer issue of Advocate for their names. Stay tuned to The Arc for news on the budget cycle through to the final budget in June. To learn more about our priority bills or budget advocacy, call or email Maura Sullivan at 781 891-6270, ext 113 or sullivan@arcmass.org

The Arc of Massachusetts


Government Affairs

MassHealth ACO is live! As we have shared through “Notes from The Arc,” MassHealth launched new insurance programs on March 1, affecting 1.2 Million members. If you or your family member has MassHealth ONLY as an insurance, you have PROBABLY moved to a new insurance program. Do you know what it is? The following people under age 65 years of age are affected: •N  O other health insurance (private or Medicare) • L ive in the community •A  nd in one of these MassHealth plans -- MassHealth CarePlus , MassHealth , CommonHealth, MassHealth Family Assistance, and MassHealth Standard The key action is to know if you were moved to a new plan or not. Your primary care practitioner should have shared such information with you, but if you are not sure of your status, please call his/ her office and check into it. (Many moved into an “accountable care organization or ACO” a new type of managed care.) 1. Please note that if your primary care doctor (PCP) moves to an ACO, you will be automatically assigned to that ACO. A potential problem is if your specialist is more important to you than your PCP. In that case, you need to find out if your specialist is in the PCP’s program or would join that network.

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Otherwise you may choose to move to a network where your specialist can see you. You need to contact MassHealth to opt out and choose another option as soon as possible and no later than May 31. (This date may be extended for one month). 2. You also will need NEW prior approvals for your services; this may take time and this should be done before the transition period is over. 3. Last but not least, if you have a specialty clinic (autism, Down syndrome, etc.) that is in a

different geographic area or not listed in your new ACO, please go through the ACO to obtain approval. If you face difficulties, contact MassHealth customer service to address such barriers. We encourage agencies serving people with disabilities to be on top of this change. All the information you need should be at www. MassHealthChoices.com For help navigating the system, find counselors or navigators at: https://www.mahealthconnector. org/help-center

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Government Affairs

Large crowd celebrates 40th Annual Legislative Reception at the State House large crowd despite the impending rain-and-snow forecast. This year’s theme was “Honoring 40 Years of Success: Facing an Uncertain Future.” Lauren Beckham Falcone of WROR Radio, whose daughter Lucy has Down syndrome, served as Emcee. Leo Sarkissian, Executive Director of The Arc of Massachusetts, presented opening remarks.

Governor Charlie Baker

For four decades, The Arc of Massachusetts and the Massachusetts Developmental Disabilities Council have joined with families, human service agencies, and legislators in March to observe Disability Awareness Month, to honor outstanding legislators, and hear from powerful advocates who present the issues facing families from across the Commonwealth. The 2018 Legislative Reception, held on March 7th, attracted a

Emcee Lauren Beckham Falcone with Leo Sarkissian

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Two veteran legislators, Senator James Eldridge and Representative Denise Garlick, were honored with Legislator of the Year awards for the role in advancing the rights of people with disabilities.

the lead Senate Sponsor of An Act Establishing Medicare for All in Massachusetts. He was presented with his award by State Senator Karen Spilka, who chairs the Senate Ways and Means Committee. State Representative Garlick serves the 13th Norfolk District, which includes Needham, Dover, and Medfield. Elected in 2010, she currently serves as the House Chair of the Joint Committee on Mental Health, Substance Use and Recovery. Previous, she served as the Chair of the Joint Committee on Elder Affairs, and Vice Chair of the Joint Committee on Education. Rep. Garlick has been a long-time advocate and leader for Family Support and a powerful ally since the inception of the Supporting Families Campaign. She has cosponsored many bills, including

State Senator Eldridge, who represents parts of Middlesex and Worcester counties, has served the Middlesex and Worcester district since 2009. He currently serves as Senate Chair for the Joint Committee on Financial Services, which is responsible for all health insurance legislation. For the current legislative session, he is a lead sponsor of An Act Providing Equal Access to the Bureau of Special Education Appeals and An Act Improving Access to Child and Adolescent Mental Health Services. He also is co-sponsor of over a dozen bills to specifically benefit people with developmental disabilities and (L-R) The Arc’s Leo Sarkissian, Representative Denise Garlick, their families, and is Senator James Eldridge, and Dan Shannon of MDDC

The Arc of Massachusetts


Government Affairs Large crowd celebrates 40th Annual Legislative Reception continued from p. 16

Governor Charles Baker spoke to the crowd about having higher expectations for people with intellectual and developmental disabilities. The Governor referenced the two organizations’ work toward The Great Hall is packed! State Senator Karen Spilka

Nicky’s Law and Operation House Call, and has carried important budget amendments for funding Department of Developmental Services line items. Rep. Garlick’s leadership extends to educating new legislators about disability priorities. Her personal experience and nursing background give her unique insight to the demands families and individuals with developmental disabilities face in their daily lives. She was presented with her award by Speaker of the House Robert DeLeo.

Speaker of the House Robert DeLeo

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important issues facing people with disabilities and their families was parent Angela Ortiz, founder of the Massachusetts Pediatric Home Nursing Care Campaign.

Angela Ortiz addresses the crowd.

“giving folks in the disability community the opportunities and the tools that they need to be fully independent and integrated into the community”. He also presented a proclamation of Disability Awareness Month. Speaking about the

Matthew Bander, Vice-Chairperson of the Massachusetts Developmental Disabilities Council, delivered the Call to Action, and urged audience members to visit their own legislators to advocate for expanded funding and improved services and supports for their loved ones.

Matthew Bandar of MDDC

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Government Affairs

Supporting Families Day a great success!

Claire Manning, The Arc of the United States

The Supporting Families Campaign held its 3rd annual Advocacy Day at the State House, on Tuesday, February 13th. The day began with a crowd of over 50 families meeting to review the day’s agenda, including the budget priorities of Supporting Families. The crowd listened while Maura Sullivan, Dir. of Gov’t Affairs for The Arc of Mass ing r t ou r upcom inars i s i V e fo Sem sit eeds b e N w ial c Spe

explained the importance of the DDS Family Support line items as well as Turning 22 and Autism Omnibus. Families were given materials with the line item budget “asks” and narratives, plus family stories to help illuminate the gaps in funding. Next, attendees heard from Representative Linda Dean Campbell about the importance of family advocacy and her own commitment to the campaign. Last, the group heard from Claire Manning, the Director of Advocacy and Mobilization, from The Arc of the United States. From there, families disseminated throughout the building to visit their legislators and share their stories – the goal of the day!

Special thanks to Senator L’Italien, Representative Linda Dean Campbell, and Kerry Mahoney and the entire Supporting Families Coalition for making the day such a great one! We are truly grateful to all the families who took the time out of their busy days and came to share their stories with legislators. Their efforts make the most impact on our lawmakers, as the stories make the budget line items real and meaningful. Stay tuned as the budget process unfolds. For more information on the Supporting Families Campaign, contact Maura Sullivan or Kerry Mahoney at sullivan@arcmass.org or Mahoney@arcmass.org

We’re Here to Help Our commitment lasts a lifetime. Whether your loved one with special needs is an adult or a child, we can help with: • Special Needs Planning • Transition Planning & Adult Services • Guardianship & Alternatives • Advocacy

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508.459.8000 | www.fletchertilton.com

The Arc of Massachusetts


Support The Arc of Massachusetts with a Bequest One way for you to support the mission of The Arc of Massachusetts and to leave a lasting legacy is through a bequest. A bequest is a gift made to charity in your will or trust. A significant benefit of making a gift by bequest is that it allows you to continue to use the assets/property you may leave to charity during your life. Your gift can be for a specific amount, a percentage, or some portion of the remainder or residual amount (after family, relatives and friends have received their designated share). Please do let us know if you have included The Arc of Massachusetts in your will or estate plans. We would very much like to thank you for your foresight and generosity and make you a member of the Advocates for the Future society!

Types of Bequests There are a number of ways you can make a bequest to The Arc of Massachusetts. A specific bequest is a gift of a defined dollar amount,

a particular tangible asset such as real estate, a car, shares of stock, or other property. For example, you may wish to bequeath a retirement account, a portion of your home’s value, or $10,000 to The Arc of Massachusetts. Another kind of specific bequest involves leaving a percentage of your overall estate to charity. For example, you may wish to leave 15% of your estate to The Arc of Massachusetts. A residual bequest is made from the balance of an estate after the will or trust has given away each of the specific bequests. A common residual bequest involves leaving a percentage of what is left in the estate to charity. For example, you may wish to leave 30% of the remaining value of your estate to The Arc of Massachusetts.

Bequest Benefits There are no limitations on bequest gifts. Bequests may be made for a general or specific purpose. As of 2017, all bequests to tax-exempt entities approved by the IRS are not subject to estate taxes. Please

be sure to consult your tax advisor for advice regarding your own personal situation. If you have a taxable estate, the estate tax charitable deduction may offset or eliminate estate taxes resulting in a larger inheritance for your heirs.

Bequest Language Your attorney can help you include a bequest to The Arc of Massachusetts in your estate plan. We have provided some basic bequest language to assist you and your attorney on our website at www. arcmass.org. As with any major financial or legal commitments, we encourage you to seek the advice of an attorney and/or a financial planner with expertise in special needs planning who can advise you on how to protect both current and future financial needs. Please contact Katrin Aback, Director of Development, if you have any questions about how to make a bequest to The Arc of Massachusetts. She can be reached at aback@arcmass.org or 781-891-6270 x105.

Have you included The Arc of Massachusetts in your plans with a bequest or other gift? Join Advocates for the Future The Arc of Massachusetts wants to celebrate and honor the individuals who have made a commitment to support our mission and work through their estate plans or will. These gifts will ensure that the work of The Arc will continue for years to come. Advocates for the Future, The Arc of Massachusetts planned giving society, recognizes people who have made a commitment to ensuring that everyone with intellectual and developmental disabilities will have the opportunity to be full members of the community. If you have already included The Arc of Massachusetts in your will or estate plans, please let us know! We would like to thank you for your foresight and generosity. Plus, with your permission, we would like to recognize your dedication to people with disabilities. As an Advocate for the Future, you will receive our quarterly newsletter Advocate, be included in our annual report, and receive invitations to special events. Please contact Katrin Aback, Director of Development, at aback@arcmass.org or 781-891-6270 x105 to discuss your plans and to join the Advocates for the Future.

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Education and Training

Webinars Monday, May 14, 2018 Noon - 1:00 PM FREE -- Thanks to the Becker Center for Advocacy An Introduction to Key Aspects of Supported Decision Making Presented by Michael Kendrick and Anna Krieger, Center for Public Representation Individuals with disabilities, like all adults, should have the right to make their own decisions. They should be provided support and guidance rather than legal restrictions or guardianship. This webinar will provide an overview of Supported Decision Making - how it works and what the key elements are.

Thursday, June 7, 2018 Noon - 1:00 PM FREE -- Thanks to the DDS and MPTE Department of Services ( DDS) Eligibility -- Which Door to Enter? Presented by Kristen O’Melia, Director of Family Support, Intake and Eligibility and FIRST Team Considering applying for services from DDS? This workshop will help you understand the eligibility guidelines, application process and know the types of services and supports you could receive

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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

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The Arc of Massachusetts


SUPPORTbrokers

Welcome new SUPPORTbrokers! We are pleased to announce that we have two new SUPPORTbrokers, Julie Heffernan and Karen Mariscal. Julie Heffernan entered the disability world when her son Brian was born twenty-seven years ago. She entered the larger world of advocacy three years later, when she got What to Expect When You’re Expecting to update its section on Down syndrome. Julie served on the Massachusetts Down Syndrome Congress board of directors for a number of years and chaired its annual Julie Heffernan conference planning committee in 1998 and 1999. She has also served on the board of and as a resource specialist for Understanding Our Differences. Julie, a graduate of Lehigh University and Boston College (BA, MAT, MA), taught English in a variety of settings for thirty years, all the while supporting Brian and her daughters, Maggie and Evie, in their many endeavors. Brian was fully included in public school, ultimately earning his high school diploma. He attended MassBay Community College for five years through the ICE and Transitional Scholars programs, while working part-time at various jobs. Brian landed a job at the State House, where he continues to work and independently commutes via

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public transportation. On the side, Brian does a lot of speaking as a self-advocate, and Julie is occasionally his co-presenter. With the help of his parents, Brian has built a full social life through their town’s wonderful recreation programs, their church, and Community Rowing, Inc.’s para-athlete program. Julie is excited to use the skills and connections she developed while advocating for Brian to help others also achieve their goals and dreams.

Autism of Massachusetts), and sits on the Housing Subcommittee of Massachusetts’s Karen Mariscal state-wide Autism Commission. She is an active member and past president of Wellesley STARS (track program for special needs adults). She graduated Cum Laude from Northwestern University School of Law in 1984.

Karen Mariscal is the parent of a severely autistic adult son, age 25, so she has been through the system herself and has experience with it, both professionally and personally. As a SUPPORTbroker, Karen works with individuals and families to help them plan for FOR LIFE the future so Learn what matters, where it matters that the loved • Skills for Life Occupational Therapists support development of life skills and emerging independence one can live the in your home and community best life pos• Our clients are between 16-26 and can be in school or sible. Karen is have graduated knowledgeable • We specialize in supporting young adults with executive about issues infunctioning challenges that impact their independence at home and in their community volving government benefits, Please call 617-879-0305 estate planning, for a free 30 minute consultation for more information and guardianProgram Director: Jane Hannafin, MS, OTR/L, RYT ship. She is the Clinical Director: Brooke Howard, MS, OTR/L 200 Ivy Street | Brookline, MA 02446 chair of the 617-879-0305 | skillsforlife@ivystreetschool.org housing task ivystreetschool.org/skillsforlife force of AFAM (Advocates for

SKILLS

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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News from the chapters of The Arc

Multicultural Outreach and Partnerships at the Brockton Area Arc By Kathy Kerwin

families is Olga Lopez, Information Specialist/Outreach Coordinator to Latino Families Coordinator from the Federation for Children with Special Needs.

zations have presented workshops on “Basic Rights” and “Transition” at the Brockton Area Arc, thanks to a grant from the MDDC. The Federation for Children with Special Needs has also partnered with our Cape Verdean/Portuguese Parents Group to provide training and networking opportunities. Over the past several years, parents have completed a number of trainings on educational advocacy topics in their own language. In March, eight parents were able to attend the Visions of Community conference, thanks

In January, February, and March parents, grandparents, and a greatgrandmother attended presentations on “Basic Cape Verdean parents and Maria DaSilva from BAArc Rights, the IEP and Your attend “Visions of Community” conference sponsored by the Federation for Children with Special Needs. Child,” and ”Effective Communication.” An upcoming For many years, the Brockton meeting will focus on disciArea Arc Family Support Center pline and bullying. has reached out to the Haitian DPH Care Coordinators and Cape Verdean communities from the Southeast region in our area. Active family support also attended the March groups have developed and meet meeting and shared regularly. In the past year, similar “goody bags” with efforts to reach Spanish-speaking the families, including parents in the greater Brockton area Presentation by Dr. Renald Raphael and Claude Desir emergency preparedness have resulted in the formation of a (HAPHI) at BAArc materials and the Family monthly group meeting. Assisting to scholarships from the Federation. TIES Resource Book. us to reach out to and provide valuable information and networking opportunities for Spanish-speaking

BAArc’s Haitian Family Outreach has blossomed into a well-connected, active family group that meets monthly to share a meal, friendship, and information. Our partnership with the Haitian American Public Health Initiatives (HAPHI) and the Federation for Children with Special Needs has really benefited these families in recent months. Haitian-speaking Olga Lopez, Federation for Children with Special Needs, presents “An IEP for My Child” in Spanish at BAArc trainers from those organi-

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Recently Family Support staff from BAArc, the Federation for Children with Special Needs, and the DPH Care Coordination team met to discuss opportunities for more collaboration that will benefit Latino, Haitian, Cape Verdean and other families in the greater Brockton area. We are looking forward to strengthening our partnership with these organizations and HAPHI, and planning future activities that will benefit all families in the greater Brockton community.

The Arc of Massachusetts


News from the chapters of The Arc

Berkshire County Arc’s Legislative Breakfast, plus a visit from DDS Commissioner Jane Ryder!

The demonstration at Zip ‘N Sort Mail Services

Visiting Kathy Clark in her apartment

On Friday, March 23, legislators, caregivers, individuals and staff from Berkshire County human service agencies gathered for the 18th Annual Legislative Breakfast “Let Our Voice Be Heard: Advocating for Support and Services for People with Disabilities” at the Berkshire Hills Country Club in Pittsfield, Mass. Kenneth W. Singer, President and CEO of Berkshire County Arc, facilitated the event. Participating in the forum were State Senator Adam Hinds and Reps. Tricia Farley-Bouvier and John Barrett, III. Pittsfield Mayor Linda Tyer and North Adams Mayor Tom Bernard provided remarks, which were followed by stories from human service employees, individuals, and parents about the extensive level of care that they provide and receive from these local organizations.

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The legislators in attendance expressed their sentiments for the work of staff and the services that are provided right here in Berkshire County. They consistently select human services as one of their top priorities come budget season time and will continue to fight for the rights of individuals with disabilities here in Berkshire County and in Washington. Family members and individuals shared their stories, which clearly demonstrated their strength and perseverance in the handling of great challenging and also spoke highly of the incredible agencies that help support them every step of the way. The event was made possible through the efforts of the following attending partner agencies: Ad Lib, Inc.; Autism Connections; BAROCO Corporation; Berkshire County Arc; Berkshire Family & Individual Resources, Inc.; Brain

Injury Association of Massachusetts; Department of Developmental Services; Goodwill Industries of the Berkshires; Guidewire, Inc.; Massachusetts Rehabilitation Commission; ServiceNet; and United Cerebral Palsy Association of Berkshire County Following the Legislative Breakfast, DDS Commissioner, Jane Ryder, visited two BCArc programs: Zip ‘N Sort Mail Services and BCArc’s Community Apartments. On the tour through Zip ‘N Sort Mail Services she met with many individuals, and saw a variety of mail processes. In the photos, you’ll see Jane getting a demonstration of the First-Class Pre-Sort machine at the mail facility and Jane visiting with individual and BCArc Board Member, Kathy Clark in her apartment where she learned about Kathy’s long history with BCArc, what she likes to do with her time off, and the many opportunities she has to engage with her fellow apartment members and in the Berkshire community.

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News from the chapters of The Arc

The Arc of Opportunity’s March 2018 art exhibit By Krista Bebezas

piece that was created by individuals attending art therapy groups as well as by members of the community. Not only was the mosaic Krista Bebezas, The Arc of Opportunity’s art therapist, with the mosaic created with triptych. the community, but also for the The Arc of Opportunity’s latest community. The mosaic will be hung art exhibition took place at The outside the children’s section of the Fitchburg Art Museum in March, Fitchburg Public Library later in the 2018, in honor of National Disability spring, after being exhibited at the Awareness month. The title of this museum. Considering the mosaic’s exhibition was “The Whole Gestalt,” final destination, the mosaic is a because by definition gestalt is an triptych of a landscape that relates organized whole that is perceived as to the idea that “reading can take more than the sum of its parts. The you places.” The goal was for the mosaic featured in this exhibition, mosaic to be bright, colorful, and among seventeen individual have a whimsical feel. Individuals artworks, was a good visual example from The Arc frequent the library, of this. Since one of the goals of The Arc is community inclusion, the glass so a mosaic in this location will offer individuals a sense of pride in tile mosaic was a larger collaborative seeing their work displayed in the

community on a regular basis. This year’s art show was very successful in that more than half of the saleable artworks were sold, with the proceeds going to the artist. Around sixty people attended the reception, and the participating artists felt validated by having their work displayed and acknowledged by the many people who viewed it. Because the mosaic will eventually be displayed at the Fitchburg Public Library, these benefits will continue. The public display of artwork sends a message of advocacy and inclusion. The art therapy programming offered at The Arc of Opportunity helps to achieve part of its mission inherent in the process of creating art, through art exhibitions, and by creating art for and with the community. The process of creating art is life-enhancing, and the product says we are here making our mark, positively contributing to the community. Look what we can do!

Over 200 attend Berkshire County Arc’s Sprout Film Festival

(L-R) Berkshire County Arc President & CEO Kenneth W. Singer; Sprout Executive Director Anthony Di Salvo; and Jason Halkias

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On Sunday, March 25, more than 200 moviegoers attended the 11th Berkshire County Arc Sprout Film Festival at Berkshire Community College’s Robert Boland Theatre in Pittsfield, Mass. The event was hosted by Berkshire County Arc’s Down Syndrome Family Group. The Down Syndrome Family Group is comprised of over 30 families throughout Berkshire County, working to advocate for and educate the public about Down Syndrome and people with disabilities. The Festival featured 13 films about individuals with various disabilities, their lives and personal achievements.

continued on page 26

The Arc of Massachusetts


News from the chapters of The Arc

The voice of peer support By Therese LaPorte

I am a person with disabilities and I have been a member of the Peer Support Advisory Committee at The Arc of Greater Haverhill-Newburyport for three years. Peer support is a group of about 8-10 members who meet two times a month to support each other any way we can. If you would like to make a change in your life, but don’t know how, we support each other to do that. There are always opportunities for change if you will work hard at it and peer support can help. At Peer Support: • We accept everyone who wants to join us. • We respect everyone and their opinions. • We listen to each other and we work as a team to get things done.

• We are all friends. • We help and encourage each other the best that we can. Right now, I am learning about responsibility, self-advocacy, and leadership. If you say you want to help people, then you have to be responsible, follow through and help them. To me, self-advocacy means to help people who do not have the courage to speak up for themselves. Leadership means being a leader and doing things even if you are afraid to do it. Encouraging independence means to encourage people to be independent and do what they want in their lives instead of always doing what other people say they have to do. We are starting a Speakers Bureau soon. We have been working to put together the presentation. We

are planning to use roleplay as well as telling our own stories to explain how peer support works. Our Therese LaPorte first meeting is going to be at Coastal Connections. Our plans are to make sure that younger people are aware that there are programs out there to help them and that they do not have to face hard stuff alone. I really enjoy being part of the Peer Support Advisory Committee and being able to help others. I believe it is very important work. We might learn differently, but we all want to be treated like everyone else.

The Arc of Bristol County receives grants for Drums Alive! Ability Beats for individuals with Autism Spectrum Disorder along with their family members/caregivers and staff.

Drums alive!

The Arc of Bristol County is excited to announce the launch of a unique recreational and fitness opportunity

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According to the founder, Carrie Ekins, Drums Alive is a “unique sensory/motor program that is designed to give the mind and body instant feedback through continuous movement and rhythmical flow. It… utilizes ‘whole brain – whole body’ thinking by developing sensory motor reflexes and kinesthetic awareness.” Drums Alive, Ability

Beats is appropriate for all ages from young children through adults. Along with offering 10-week sessions throughout the year, The Arc will also offer the program during its vacation clubs which occur four times per year. Donna Brown, Vice President stated, “Staff are eager to become trained to deliver this exciting opportunity for individuals and are so grateful to the Doug Flutie Jr. Foundation for Autism for providing this grant making it possible.”

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News from the chapters of The Arc

Employment Jump Start for teens with disabilities By Stephanie Parish

leading to permanent, paid work. Minute Man Arc and the Massachusetts Rehabilitation Commission have teamed up to offer young adults between the ages of 16 and 22, a ground-breaking, real work experience. Participants receive extensive job training from seasoned professionals and then are matched with paid internships where they are coached to do their best work.

Mickey at work at CVS

Teens and young adults with disabilities can find it challenging to get that all-important first job. Employers are reluctant to hire people who are different from the typical workforce. But with the right training and placement through Minute Man Arc’s new Jump Start program, young people with disabilities are gaining real world job experience that is

immediately upon completion of her paid internship. When asked why her internship clicked, Mickey said “Minute Man helped me find my natural gifts and I just knew I could do this.” Mickey is on the autism spectrum and possibly because of her disability brings extraordinary organization skills and attention to detail to her job where she restocks products and works the cash register. Mickey’s job coach, Sam Streisand of Minute Man Arc, is impressed with how well the match has worked and said, “We do our best to place people where they can be successful and Mickey has really excelled at CVS.”

The first training session was held last fall at Minute Man Arc and resulted in two of four participants finding permanent jobs. Instructional classes occurred over four Saturdays and included hands-on workshops in Another recent Jump Start graduate resume writing, interviewing, skill has found permanent employment building, and exploration of the career at Crosby’s Marketplace in Concord. experience from beginning to end. The second Jump Start class is now Jump Start graduate McElle “Mickey” underway. For information on Fresard was offered permanent applying to this program, contact work at CVS Pharmacy in Littleton Minute Man Arc at 978-287-7900.

Over 200 attend Berkshire County Arc’s Sprout Film Festival continued from p. 24

The Festival opened with the film “Drumming Is Like Thunder,” a showcase for Duncan’s showmanship and determination to defy the bullying behavior and his dream to perform in major cities around the globe. A perfect segue into Autism Awareness Month in April, “Ben’s Filming the Movie,” was a short documentary about Benjamin Howard, a 14-year-old boy who loves acting and movies. This film

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was one of three shown during the festival, featuring individuals on the spectrum. The festival ended with special guest, Jason Halkias. Jason was featured in one of thirteen films shown at the festival, a self-titled documentary “Jason”. He drove 15 hours to attend our showing in Pittsfield from Iowa. The audience was entertained after the show with a special karaoke performance by Jason of Lyndsay Buckingham’s

“Holiday Road”! A reception catered by Berkshire Community College followed the Film Festival, featuring an exhibit from the new BCArc Brain Injury Program, Nu-Opps, called “Unmasking Brain Injury,” where each mask told a story of an individual’s journey through their injury. All proceeds from the event support children, adults and families of Berkshire County residents with and impacted by Down syndrome.

The Arc of Massachusetts


News from the chapters of The Arc

Joe and Doug: Brothers reunited By Alison Rivers, Charles River Center

In 2006, Joe Homsi and his brother, Doug, were in a terrible car accident. Doug was hospitalized for many months, which meant that he and Joe, who has developmental disabilities, could no longer live together. The two brothers, who are both in their 70s, had lived together in their family home in Needham for their entire lives. With Doug in the hospital, Joe was unable to live in the home alone, so he stayed with different family members while his brother recovered. “The hope was to reunite the two brothers in their family home. What they wanted the most was to be together again,” says Kayla Condon, the Program Director of Individual Support. Joe had been a member of the Charles River Center’s Employment program since 1990, but had never needed assistance in his home before. Staff at the Charles River Center realized the two brothers needed some help, so members of the Charles River Center’s Individual Support team stepped in. After a long, ten years of recovery, Doug and Joe were able to move back into the home together, but Doug continues to have very limited mobility and is in a wheelchair most of the time. So twice a week, Joe’s case manager from the Charles River Center’s Individual Support team visits Joe

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Joe and Doug

and his brother in their home. She helps with Joe’s medical care and appointments, home care, and his finances, and she also coordinates care with Doug’s caregivers, since he, too, needs assistance. Kayla stops by once a week as well to check in. But Joe has also stepped up and taken more responsibility, too. He keeps track of his medical appointments, gets the mail, does his own laundry, and has lost 20 pounds in an effort to improve his health. Before the accident, if you asked someone about Joe, they might have said he could be a

bit grumpy, but his newfound responsibility and appreciation for life has caused Joe to have a new lease on life. “He is happier and more willing to try new things,“ says Kayla. Today, Joe and Doug are glad to be together again. They enjoy meals together (indulging in an occasional Honey Dew donut, their favorite), visit, and tease one another in a brotherly way. Joe also calls Kayla every morning to talk about his plans for the day and tell her how much he loves and appreciates her. “It’s really amazing how far he’s come,” says Kayla.

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Non-Profit Organization U.S. Postage PAID Permit #121 Pittsfield, MA

217 South Street Waltham, MA 02453 (781) 891-6270 www.arcmass.org

Achieve with us. Brockton Area Arc families benefit from United Way’s “Warmer Winters” initiative By Kathy Kerwin, Director – Family Support Center

from the cold weather we have been experiencing this winter.

Laticia, Junior and Kerlane are enjoying their new jackets!

Thanks to the generosity of the United Way’s Warmer Winters partners, 29 children affiliated with the Brockton Area Arc (BAArc) have had warm jackets to protect them

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When the United Way of Greater Plymouth County (UWGPC) contacted us to ask if we knew children who were in need of winter coats, we responded immediately. The UWGPC partners also responded. Beth Israel Deaconess Hospital - Plymouth, Bridgewater Savings, Cushman Insurance, Macy’s Kingston Collection, Ockers Company, Rockland Trust and Target stores provided the funding that enabled the Brockton Area Arc and other community agencies to purchase and distribute many jackets to area children. BAArc families, many of whom are struggling to make ends meet and to keep themselves warm during this very cold winter, are grateful to

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Our advertisers help support the mission of The Arc of Massachusetts. the United Way and its partners in our community for the help they have received through the Warmer Winters Initiative.

The Arc of Massachusetts

Advocate Spring 2018  
Advocate Spring 2018