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Advocate Fall 2018

We Can Do Better – Addressing the Workforce Crisis By Leo V. Sarkissian

An agency scrambles to find new program managers for several homes in the Greater Boston region. A parent who must have in-home staffing for her adult son, fears she may have to give up her job because of the inability to recruit nursing or PCA help. Or a father can’t fill 40% of the required nursing hours for his young daughter.

These stories are but a very small slice of what families, people with disabilities, and providers face every day. But what isn’t always understood in these accounts is the continual process of recruitment, orientation, and training which must go on to keep pace with the “workforce crisis.” Nationally, turnover of direct support staff that serve people with disabilities

Join The Arc of Massachusetts for Leading by Example: The 2019 Gala! By Katrin Aback

Get out your calendar and make plans to join The Arc of Massachusetts on Wednesday, March 27, 2019 for our Leading by Example Gala. We will be recognizing several special people

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is recorded at 44%. But even in agencies recording “modest” turnover (10-20%), the ability to recruit new staff lags. When I took my position as an assistant teacher at a clinical nursery program in 1976, I didn’t expect a large salary, but I did receive a living wage. This wage allowed me to rent a 2-bedroom continued on page 12

Inside this issue... Article Page Spotlight On: The MENTOR Network................7 Education and Training................8

with intellectual and developmental disabilities who are making a difference: teaching the next generation of doctors; advocating at the State House for much-needed services and funding; and educating the community. They have overcome challenges themselves and their stories will inspire you. continued on page 3

Government Affairs....................12 Becker Center............................13 The Friendship Corner................14 News from the Chapters............16


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

Deborah Norton President

Scott Borchardt Vice President

Kristin Hilf Secretary

John Mallin Treasurer

Tracy Atkinson Immediate Past President

DIRECTORS

Subhadeep Basu Jim Calvin Martin Courage

Susan Lodemore Sean Morrissey John Nadworny

STEERING COMMITTEE

Janet Sweeney Rico, Chair Jim Buss Barbara Pilarcik Rosalie Edes Jim Ragazzo Christopher Fox, Ph.D. Renald Raphael Karen Mariscal Hillary Dunn Stanisz Geoffrey Misilo Mary Valachovic Leo Sarkissian, Ex officio Scott Borchardt, Ex officio Ellen Taverna, 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 Ellen Taverna Policy Officer Judy Zacek Manager, Community Relations

Ellen Taverna Joins The Arc of Massachusetts Staff We are pleased to announce the appointment of Ellen M. Taverna as Policy Officer at The Arc of Massachusetts. Ellen has served in the policy arena in Washington, D.C. since 2004. Recently she was the Legislative Director of the National Association of Consumer Advocates (NACA), a nonprofit organization of over 1,500 consumer protection attorneys and advocates. She developed strategies to forward NACA’s public policy and advocacy goals. Prior to joining Ellen M. Taverna NACA, she was the Consumer Protection Manager and Counsel for the National Association of Attorneys General. Her disability advocacy experience is reflected in three areas: field organizer at the Center for Disability Rights; Advocacy Committee member at The Arc of Northern Virginia and the Autism Society of Northern Virginia; and Co-Chair of the Alexandria City Public Schools’ (ACPS) Special Education Advisory Committee (SEAC). Ellen received a B.A. in Political Science from Villanova University, where she graduated cum laude. She received her law degree from DePaul University College of Law in Chicago, Illinois. “We are confident that Ellen will be a valuable team member, given her personal and professional connections to our work,” said Executive Director Leo V. Sarkissian. “Her experience in policy and advancing priorities focused on integration and equality are consistent with our mission.”

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Join The Arc of Massachusetts for Leading by Example: The 2019 Gala! continued from p. 1

The Gala will be held at the renovated 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 spirited live auction featuring fabulous trips and prizes. Sponsorship Opportunities and the Auction Sponsorships start at $1,000 and provide corporations, individuals, and agencies an opportunity to get involved and support The Arc of Massachusetts at a range of gift levels. Please contact Katrin Aback, Director of Development, at aback@arcmass.org or 781-891-6270 x105 to learn

more about becoming a sponsor. In addition to sponsorships, we are seeking unique and fun items for the live and silent auctions. To explore giving to the auction, please contact Community Relations Manager Judy Zacek at zacek@ arcmass.org or 781-891-6270 x102. All proceeds from the Gala directly support The Arc’s mission. It is

g ur pcomin ars o t i n i Vis e for u Sem sit eds e w b ial Ne c Spe

our largest source of unrestricted revenue. We will update information about the Gala regularly. Visit www. arcmass.org/gala to get the latest details and to purchase tickets and sign up for our email list on our home page. Save the date and make plans to attend today! See you on March 27, 2019!

Leading by Example The Arc of Massachusetts 2019 Gala Wednesday, March 27, 2019 Boston Marriott Newton 2345 Commonwealth Avenue | Newton, Massachusetts arcmass.org/gala

When Your Family Asks How They Can Help Consider establishing a Family Special Needs Gift Trust. It enables extended family to set aside part of their estate for the benefit of a family member with a disability. In this season of giving, it’s a wonderful way to help.

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Achieving More Together Through The Arc of Massachusetts Agency Sponsorship Program By Katrin Aback

The Arc of Massachusetts relies on contributions and participation from a range of stakeholders including our 17 affiliated chapters, individual donors, and corporate supporters to fight for increased funding and supports, encourage legislators to pass effective laws, and affirm the rights of individuals with intellectual and developmental disabilities (I/DD). Leading human service agencies and schools that provide services to individuals with I/DD are also essential partners. Agencies that

want to ensure that the people they serve have the opportunities and resources they need to lead fulfilling lives in the community participate in The Arc’s Agency Sponsorship Program. In 20172018, fifty agencies from across Massachusetts supported The Arc’s work by being a member. They ranged in size and specialty, but all wanted to support critical advocacy for their constituents. Member agencies and schools not only make our advocacy possible, but they also receive great benefits, including access to

information, resources, and The Arc’s statewide constituency. Together, we are educating our constituents and the general public, empowering self-advocates and families, and organizing our voices. To see a current listing of our agency sponsors, please visit www. arcmass.org/sponsors. If you would like more information about the program, visit www.arcmass.org/ agency-sponsors or contact me at aback@arcmass.org. continued on page 5

2017-2018 Agency Sponsors CHAMPION

PATRON

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The Arc of Massachusetts


Achieving More Together Through The Arc of Massachusetts Agency Sponsorship Program continued from p. 4

Partner Advocates, Inc. Amego, Inc. Bass River, Inc. Beaverbrook STEP, Inc. Jewish Family and Children’s Service LifeStream New England Village Inc. NuPath, Inc. People, Inc. Road to Responsibility, Inc. Sunshine Village United Cerebral Palsy-Metro Boston Venture Community Services

Supporter Better Community Living, Inc.

Cardinal Cushing Centers Community Connections, Inc Delta Projects, Inc. Kennedy-Donovan Center South Shore Support Services, Inc. Western Massachusetts Training Consortium WORK, Inc.

Human Service Sponsor ARCHway, Inc Autism Services Association Behavioral Health Network BFAIR Cooperative Production Inc. Cotting School Devereux Massachusetts and Rhode Island

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

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Fidelity House Human Services Inc. Grow Associates, Inc. Habilitation Assistance Corporation Mental Health Association of Greater Lowell Multicultural Community Services of the Pioneer Valley The Nemasket Group, Inc. New England Center for Children Nexus Inc. The Price Center, Inc. Riverside Industries WCI

Friend Alternatives Unlimited, Inc. Specialized Housing

Economised Time Services, Inc. Supporting Massachusetts Human Service Agencies for over 35 years with specialized software solutions, including: · Ordering Referring Physician (ORP) ready solutions for Dayhab and AFC Programs · Billing: MassHealth, CCA, Tufts, Fallon, Network Health, BMC & UHC · Service Bureau for billing and payroll outsourcing needs · Web-based Consumer Payroll and Attendance Tracking, with web-based entry, advanced activity tracking and contract utilization reports · Integrated solutions for Staff Payroll and Human Resource Software www.etime.net Follow us on Twitter: @ets201

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We Are in This Fight Together By Katrin Aback

Caring, dedicated supporters like you are giving people with intellectual and developmental disabilities (I/DD), including autism, and their families a powerful voice in the State House, in meetings with policymakers, and in the community. By giving to The Arc of Massachusetts, you are enhancing the lives of the more than 200,000 individuals with disabilities living in Massachusetts. Giving them greater access to community-based lifespan supports and services including early intervention, family support, employment and residential programs, and social-recreational activities is crucial. You are a crucial part of this work, and together we are fighting to make these opportunities available. People like you give because you believe in the mission, purpose, and work of The Arc of Massachusetts and you want to make progress happen. While the tax law changes that were instituted earlier this year may change whether you are able to take a deduction on charitable gifts, you know how important supporting and improving the lives of people with I/ DD is. As 2018 winds down, we ask that you please consider renewing or increasing your gift to The Arc of Massachusetts Annual Fund. Here are some ideas for how you can make a difference.

Giving Stock is a Win-Win One way to support The Arc that also can have significant benefits for the donor is by giving appreciated stocks or securities. In doing so, you can avoid paying capital gains taxes and may be able to take a tax deduction on the fair market value. To avoid

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capital gains taxes, you must provide the securities themselves to The Arc, not the proceeds of their sale. Plus, if you itemize your deductions, outright gifts of appreciated securities are taxdeductible at full fair-market value, provided you have owned the asset for one year or more. Do let us know that you are transferring securities so that we credit you properly and issue a receipt for tax purposes. It also is important to consult a tax advisor or your accountant for advice related to your personal circumstances.

Could Monthly Giving be the Easiest Way to Support The Arc? Support the programs of The Arc of Massachusetts with a monthly gift. Your gift will help sustain The Arc throughout the year and in years to come. It’s very easy to join either on our website or by phone. We will charge your credit card each month in the amount you tell us, and you can stop at any time. Feel good knowing that you are making a difference every month.

A Gift that Gives Back Have you ever wondered what you might do to honor a family member, friend, or colleague or to mark a special occasion? Perhaps you’d like to commemorate a significant birthday or anniversary, memorialize a loved one who has passed away, or express your gratitude to someone who has made a difference in your life. When you make a tribute gift to The Arc of Massachusetts, we will thank you for your gift and let the individual you wish to honor know that a donation has been made in his or her name.

It’s as Simple as a Couple of Clicks Do you have a Donor-Advised Fund? You can now quickly and easily recommend a gift to The Arc of Massachusetts through your Fidelity Charitable, Schwab Charitable, or BNY Mellon Charitable Gift Fund via our website. Select the financial institution that manages your fund and enter the dollar amount you would like to contribute. Then click “next” to proceed to the sponsoring organization’s website to complete your transaction. The donor-advised fund sponsor handles the record-keeping, disbursements, and tax receipts. Neither you nor The Arc of Massachusetts pay any transaction fees. Once your request has been approved by your DAF, your gift goes directly to The Arc of Massachusetts.

Don’t Let That Minimum Distribution from Your IRA Increase Your Tax Bill If you are not planning to itemize your taxes, consider making a gift from your IRA. The new tax law did not change the rules for qualified charitable distributions. This provision allows people 70½ and older to transfer up to $100,000 from their IRAs to charity each year. It counts toward the required minimum distribution without being added to adjusted gross income. The tax-free transfer from an IRA lets you benefit from making a gift to The Arc of Massachusetts, even without itemizing. You should note that the gift from your IRA must be made directly by the custodian of your IRA, not you. Call the financial institution that holds your IRA and ask about its charitable rollover procedures. continued on page 9

The Arc of Massachusetts


SPOTLIGHT ON: The MENTOR Network An Enduring Commitment to Finding a Better Way

It all started in Cambridge, Massachusetts. Byron Hensley saw the state of services for youth involved in the juvenile justice system and believed there was a better way. This was the late 1970s, and although the deinstitutionalization movement had already begun to reshape the nation’s approach to human services, youth with complex needs were often placed in facilities or similarly restrictive settings. Mr. Hensley believed they could be supported in more natural settings. He believed they deserved the opportunity to be in a family home, where they could receive personal supports and build meaningful relationships that would help them grow and thrive. In 1980, he and his colleagues established one of the first Therapeutic Foster Care programs in the country. This program was the seed that ultimately would grow to become The MENTOR Network. Today, The MENTOR Network is a national network of local health and human services providers with programs in 36 states. The Network provides home- and community-based services to youth at risk and their families, individuals with intellectual and developmental disabilities, individuals with brain and spinal cord injuries, and elders in need of day health supports. “What unites The Network’s diverse range of services is the belief that with the right supports, individuals of all abilities are capable of thriving in the communities they call home,” said Bruce Nardella, President and CEO of The MENTOR Network. The Network’s range of services can be seen in its programs in Massachusetts.

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These include neurorehabilitation programs for individuals with brain injury offered by NeuroRestorative Massachusetts, and adult day health programs for elders in need of support offered by MENTOR ADH. As Massachusetts MENTOR, The Network provides Therapeutic Foster Care and family preservation services to children and families, and Host Home and periodic services to individuals with intellectual and developmental disabilities. These programs emphasize personal choice and individualized supports to help individuals and families thrive in the community. Massachusetts MENTOR’s ability to grow its programs to meet the diverse needs of those it serves would not be possible without a focus on quality. “We believe it‘s our responsibility and privilege to deliver exceptional supports to the individuals we serve,” said Melissa Lewis, State Director of Massachusetts MENTOR’s Community Support Services (I/DD). “Every program we offer is committed to continuous quality improvement and the idea that we can get better every day.” These measures are built on proven policies and procedures, a focus on continued learning and clinical advancements, experienced leadership, and a commitment to meaningful outcomes. The Network’s programs utilize technology systems such as iServe, an electronic records system, to better ensure consistent, quality care and to track outcome data, which is valuable in identifying opportunities for service enhancement. “Community-based services have

come a long way, but providers, along with advocacy groups and public partners, should always keep striving to do better,” said Gerry Morrissey, Chief Quality Officer of The MENTOR Network and former commissioner of the Massachusetts Department of Developmental Services. “That’s why a focus on continuous quality improvement is so important.” In addition to ensuring the quality and effectiveness of services today, a culture focused on continuous quality improvement (CQI) leads to even better services tomorrow. The impact of CQI can be seen in a breakthrough in service delivery as well as something as simple as the language we use. Person-first language is an example of the latter. Person-first language is predicated on the belief that individuals with disabilities are people first — that a diagnosis of a disability does not define them but is one aspect of who they are. The MENTOR Network recently made a commitment to adopt person-first language throughout the organization. This fiscal year, The MENTOR Network Charitable Foundation Community Partners Program will focus exclusively on funding grant requests from 501c3 organizations to adopt person-first language. This is another step towards promoting the dignity of and enhancing the opportunities for individuals with disabilities and other challenges. The Network and its partners, including Massachusetts MENTOR, are proud continued on page 9

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Education and Training

Charting the LifeCourse Comes to Massachusetts! More than 200 professionals, parents, and educators attended the Charting the LifeCourse conference in September at the Devens Conference Center. The Conference was led by Michelle Reynolds and Jennifer Turner from the University of Missouri at Kansas City Center for Excellence in Developmental Disabilities. The LifeCourse Framework (www. lifecoursetools.org) was created to help self-advocates and family members create a vision for a good life, create a plan to get there, and map out the supports needed. This day-long training laid the ground-

work for future efforts to use LifeCourse shown are critical to the transition proTools with self-advocates and families in cess: Cross-Systems Collaboration, Work Massachusetts. Experiences, Family Engagement, and Self-Determination and Self-Advocacy. The conference was sponsored by The Massachusetts Partnership for TransiLeadership for the grant includes tion to Employment (MTPE), a systems- representatives from the Department change project of the Massachusetts of Developmental Services, the DepartDepartment of Developmental Servicment of Elementary and Secondary es. The project is designed to improve Education, the Institute for Community employment outcomes for individuals Inclusion at UMASS, Mass Advocates with intellectual and developmental Standing Strong, The Arc of Massachudisabilities transitioning from school to setts, Massachusetts Rehabilitation adult life. The broad-based MPTE Con- Commission, and Department of Labor sortium guides and supports the goals and Workforce Development.   and objectives of MPTE across MPTE’s For more information visit https:// four focus areas, which research has employmentfirstma.org/mpte/

Webinars

Wednesday, December 5, 2018 12:00-1:00 PM Adult Family Care: Is it the Right Choice for my Loved One? Adult Family Care ( AFC) is a MassHealth program that provides a 24/7 supervision and training for adults with disabilities that need assistance with their Adult Daily Living ( ADL) skills. Caregiver homes provide a supportive environment that provides the care and supervision needed. In return, caregivers receive a tax-free stipend. Learn about eligibility, the benefits of AFC, and the different situations that can enhance a person’s ability to stay in a home environment.

Presented by: Yvette Jones, B.S, Special Education/Psychology Yvette is the Director of Adult Family Care at the Charles River Center. The Charles River Center is a nonprofit human service agency with offices in Needham and Natick, Massachusetts, providing employment and job training, residential homes, day habilitation, and recreational programs for children and adults with Down syndrome, autism, cerebral palsy and other developmental disabilities. Prior to this position, Yvette managed residential services for Charles River Center and Delta Projects. Yvette also taught special education at Brockton Public schools in a self-contained classroom. FREE thanks to a grant from the Becker Center

To register for this webinar, visit: https://arcmass.zoom.us/meeting/register/dfaebb1ff1ef7a2966858a512be5123a Did you miss a webinar? Check out The Arc’s YouTube channel:    https://www.youtube.com/playlist?list=PLvvbasrFrWxYVVl151gOqr5wSzqHBv5qu • Autonomy, Decision Making Supports, and Guardianship • Divorce and Special Needs • MassHealth Changes

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• Autism Omnibus • Transition • AND More!

The Arc of Massachusetts


We Are in This Fight Together continued from p. 6 A Lasting Legacy Bequests can be a simple way to ensure that the work of The Arc of Massachusetts is carried on. By leaving The Arc in your will or trust, you can continue to use the assets or 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 (after family, relatives and friends have received

their designated share). Detailed information is available on our planned giving page at www.arcmass.org/ planned-giving. Advocates for the Future celebrates and honors individuals who have made a commitment to support our mission and work through their estate plans or will. If you have included The Arc of Massachusetts in your plans

with a bequest or other gift, please let us know. We would like to thank you for your foresight and generosity. Let’s talk! Please contact Katrin Aback, Director of Development, at aback@ arcmass.org or 781-891-6270 x105 to discuss how you can support The Arc. More information on all of these ways of giving also can be found at www. arcmass.org/ways-to-give.

SPOTLIGHT ON: The MENTOR Network continued from p. 7 to share in The Arc of Massachusetts’ commitment to enhancing the lives of individuals with intellectual and developmental disabilities. “The Arc advocates for communitybased options that promote inclusion, self-determination, and equity,” said Ms. Lewis. “These are at the heart of

Massachusetts MENTOR’s services and will continue to guide our programs.” The field of human services is constantly evolving. Although there are many challenges facing providers today, Massachusetts MENTOR and The MENTOR Network will continue to strive to make a meaningful impact in the lives of the

individuals they support. To learn more about The MENTOR Network, please visit www.thementornetwork.com To learn more about The MENTOR Network Charitable Foundation, please visit www.networkcharitablefoundation.org

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Operation House Call in the Spotlight at Program for Donors By Katerina Daley

Cathe Carpenter, Michael Borr, and Maura Sullivan

On Wednesday, September 26, The Arc of Massachusetts hosted a reception for Operation House Call (OHC) at the Boston Marriott Newton. The evening included an inside look at OHC from multiple perspectives and an opportunity for guests to mingle and network. The Arc’s Leo Sarkissian and Maura Sullivan hosted the speaking program, introducing participants who described not only their past experiences with OHC, but also their hopes for the future of this critical program. Speakers included Maura, OHC’s Program Director; Susanna Peyton, Director of OHC’s Program at the Yale School of Nursing and a parent instructor; Dr. Kim Dever, a parent co-teacher and host family representative; former OHC students Alexandra Solomon and Larissa Wenren; host family member Judith Ursitti; and Dr. Brian Skotko, Director of the Down Syndrome Program at Massachusetts General Hospital. Stories shared by these speakers included recollections of harrowing

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Leo Sarkissian with Vibeke and Gustav Christensen

medical experiences, the ways in which OHC has changed their lives and outlooks, how the program has grown in recent years, and why OHC is so utterly important for both the I/DD community and the community of medical professionals. Larissa Wenren, a fourth-year medical student at Boston University School of Medicine, described her home visit with Jack, a profoundly disabled 17-year old. “There exist very few opportunities for medical students to go into a patient’s home to learn about how factors at home can affect the patient’s health. In medical school, we are told that it’s the

Kim Walsh and Judith Ursitti

patients and their families who are by far our greatest teachers, and Operation House Call embraces that to the fullest through their home visit program and classroom discussions incorporating patients and families.” Her experience, she continued, “had a significant lasting impact. I have a much better understanding of what it is like to care for a child with disabilities. It has forever shaped how I think about and care for children and their families, particularly those children with disabilities.” The night provided a look at the future of OHC, and the medical profession as a whole. Dr. Dever, an OBGYN and mother of Bobby, a nonverbal 17-year-old with Down syndrome, spoke highly of the influence the program has had on the medical students she encounters: “It gives me so much faith in the future of medicine: the questions they ask, their engagement continued on page 11

The Arc of Massachusetts


Operation House Call in the Spotlight at Program for Donors continued from p. 10

Susanna Peyton

with Bobby, their willingness to try to communicate with him.” Susanna Peyton praised the expansion of OHC outside of Massachusetts. “We are training Connecticut parent instructors, Connecticut coteachers, and we have a Connecticut family coordinator with a whole bunch of host families who want to

The Dever Family with Julie Heffernan of The Arc

take those students in,” she said. “In just our second year, Operation House Call became a requirement at the school.” Dr. Skotko concluded the evening by succinctly summarizing all our hopes for the future of this

amazing program: “Operation House Call, when the history books are written, is part of [the disability] revolution. … I’m convinced the best is yet to come.” To learn more about Operation House Call, visit arcmass.org/ohc.

SUPPORTbrokers Welcomes Ellen Heald

Ellen Heald

Ellen Heald is currently a principal at the Northshore Education Consortium Transitions Programs of SOAR and Embark, which

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are located on the campus of Salem State University. The SOAR and Embark programs assist in implementing transition services for special education students ages 18-22. Ellen oversees all of the programmatic operations. She facilitates employment opportunities, access to college classes, social skill development, academic skills, independent living skills, and collaboration with adult service agencies to provide ongoing supports for individuals with a wide range of needs. Ellen is a school administrator and has her Master’s Degree in special education. She has been employed by the Northshore Education

Consortium for the past 25 years in a variety of roles. Ellen has experience with individuals from pre-school through 22 years of age. In addition to her role at the Northshore Education Consortium, Ellen has been a respite provider and a foster parent for more than 30 children and teens with various needs. She has knowledge of supports needed and resources to obtain such supports, both through the eyes of a professional and a parent. Ellen is looking forward to working with families to facilitate services available in and around their community to promote independence across settings.

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Government Affairs We Can Do Better – Addressing the Workforce Crisis continued from p. 1

apartment with a housemate. For a young adult, I had an ok lifestyle – thanks to my 2 evenings per week as a motel desk clerk. I saw myself growing in the field and assisting others to live a full life in the community. No one discouraged me from the field. The gap between what I would earn in other fields and this field was not worrisome. But that was then. Things have changed. The increased cost of living combined with the inadequate rates for staff compensation both through purchase of services (providers) and long-term support services used by persons with disabilities and families in their homes, is at a tipping point across the country. This problem has worsened over the past 25 years. To fully appreciate the gap in wages, we reviewed the 2017 Bureau of Labor Statistics (BLS) in Massachusetts. Despite the responsibilities and training required of our workforce, we found that our entry and mean salaries hover below those of file clerks and janitorial staff. Those other roles respectively require a high school education or no formal education. Most recently Massachusetts set new standards for all businesses across the state. By 2023, minimum wage will reach $15 per hour -- and our direct

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support workforce needs to be paid significantly above that benchmark. In fact, our field’s wages should be compared favorably with the medical and educational sectors. In Massachusetts, we know we can do better. The Arc of Massachusetts has committed to make the “Workforce” initiative a top priority in partnership with other stakeholders and we will be recommending a long-term solution to the administration and legislature. We will continue to work on other policy areas but believe that a viable workforce is fundamental to all our issues. Our recommendations include the following.

Strategy 1: The Workforce requires a significant investment over three years to achieve marketbased compensation (salary and benefits) of direct support staff or professional (DSP), behavioral technicians, front-line managers, and other roles including clinicians and non-traditional support such as companions. The funding should address the entire purchase of service (POS) system administered by the Department of Developmental Services (DDS), as well as certain MassHealth programs.

Strategy 2: Innovation and System Design Improvements are recommended which will better

address the quality of life of our constituents and further costeffective strategies. These include a focus on “Supporting Individuals and Families First,” which address outmoded services, implement technology more effectively, and review regulatory processes.

Strategy 3: Increase the availability of clinical consultation to families, providers, and health care practitioners, including the needs of those with complex behavioral or/and medical conditions.

Strategy 4: Develop systemic solutions to enhance human capital, including rates for recruitment, training, and retention. Ensure accountability for staff training and development. The Arc will work to engage the administration and the legislature on this fundamental need. This is a historical issue we hope can be effectively resolved in the present day.

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

The Arc of Massachusetts


Becker Center for Advocacy

Becker Center Honors Advocates • Attending meetings and legislative events • Testifying at hearings on bills or budgets • Writing letters, visiting and calling their Representatives and Senators • Reaching out to other parents and family members to encourage their participation • Posting on Facebook and other social media sites Becker Center honorees

In September The Becker Center for Advocacy held an Appreciation

Luncheon. Honorees were celebrated for supporting the mission of The Arc by

The Arc appreciates their time and commitment to improving the lives of people with intellectual disabilities, including autism, and their families.

MAKE YOUR PLAN BECOME A REALITY The mission of the SUPPORTbrokers program is to assist individuals with disabilities and the elderly to achieve community membership based upon their personal vision

217 South Street Waltham, MA 02453 Phone: 781.891.6270 EXT109 E-mail: info@supportbrokers.org www.supportbrokers.org

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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 include a link to 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.

Angelina Angelina is 24. She currently enjoys living with three other young women around her age. The first thing we did to help Angelina connect with others was to ask her about her interests. We completed a three-page interest inventory which provided many suggested activities that could help her connect to others in her community. During this time, Angelina had identified many interests; however, together the team and Angelina reviewed the list to determine which areas to focus on with the greatest opportunities to form connections to others. Angelina expressed her love for participating in road races. She started participating in such races over a year ago when her previous program manager, Jess, asked if she would like to participate in one with her. Since that time she has participated in more than six races. Jess had built such a strong relationship with Angelina during the time she worked at Angelina’s home that when she transferred she had asked to stay as relief staff so she could still participate in races with her. Jess has really acted as a community connector for Angelina within the 5K racing community. They have prerace brunches and many post-race activities. This has provided additional opportunities for Angelina to connect with others and to make friendships outside of her service circle. Recently Jess resigned from

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By Alysia Reid and Katie Driscoll

her relief staff position and is genuinely Angelina’s friend. Some progress has been made since we started this initiative. Angelina registered and participated in multiple community 5K races, including the 2017 Costume Dash 5K race where she was able to see many people from last year’s race. Angelina is currently preparing for the 2018 Costume Dash race, where there is an approximate group of six people who have formed friendships with Angelina and Jess through 5K racing. In fact, during an unfortunate leg injury to Jess over the summer, one of their fellow race friends relayed he would also like to start training to support Angelina in future races if Jess were unable to. Angelina’s network has expanded beyond her friendship with Jess and together they have widened their circle. Currently, we are making every effort to explore other races especially in Angelina’s home town, as well as participate in reoccurring races, and with the same people over time. By the way, Angelina happens to have cerebral palsy, developmental delays and moderate anxiety, just to name a few conditions. She resides in a medical-based group home with 24-hour staffing which includes residential counselors, CNA’s and LPN’s. Recently Angelina’s support team focused on gear that would increase Angelina’s independence and oppor-

tunities to connect to others while racing. The Florence Finkel Fund (a Program of PLAN of Massachusetts and Rhode Island, Inc./PLAN) made purchases of the following gear possible. Where she is physically dependent for most of her physical needs, the ability to self-hydrate and manage her own devices would be optimal for her and her race partners in reducing their needs to stop on their routes. Angelina’s team researched the perfect hydration pack to support these needs, and assure she has appropriate race wear available for each event. Angelina also loves to relive the experience of the races and share with others. She has attempted to record these events but without proper equipment the footage is difficult and not always enjoyable to view with others. A camera equipped for live footage and action is being pursued to allow for better production for viewing and sharing these community race experiences with other community members. Angelina and her friend Jess use social media as a platform to share their race experiences with their networks as well to connect to other races and participants, and the live footage will be a great addition. We have experienced and anticipate some challenges along the way. Some of these challenges are the amount of money it costs to continued on page 15

The Arc of Massachusetts


Friendship Corner Angelina continued from p. 14

register for each race. Some races can cost more than fifty dollars, which would be almost half of her monthly spending money. Many races take place in the Boston area where it can be very difficult to find parking for a handicapped van with a lift. These races also put a lot of wear and tear on her wheelchair as her manual chair is not specifically designed for racing. Because road races are seasonal (Spring-Fall), we wanted to help Angelina maintain contact with her fellow racers over the winter. We reached out to Angelina’s team-

mates and they were eager to connect. Staff drove Angelina to Boston for brunch with 2 teammates where they chatted, laughed, and planned for some upcoming races. When staff picked Angelina up she remarked on how much fun she had. Tellingly, she also reported that this brunch was the first time in her life that she ever spent time with just friends without having parents or staff also around! The power of friendships… For “Lessons Learned” from Angelina’s story please go to http:// thearcofmass.org/angelinalessons/

Jess and Angelina get ready to race!

The Arc/Center of Hope Foundation, Inc. Receives Funding from The Arc and Walmart Foundation to Continue Building Employment Program The Arc/Center of Hope Foundation, Inc. has received $12,000 from The Arc of the United States and the Walmart Foundation to continue bridging the gap between the career world and workers with intellectual and developmental disabilities (I/DD), through The Arc@Work. Research indicates that 85% of people with I/DD are currently unemployed. However, with the right supports, many individuals with I/ DD can successfully build a career alongside their peers without disabilities. With the Walmart Foundation’s generous support in 2016 and 2017, The Arc and its chapters significantly increased the number of individuals with I/DD placed in

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community-based employment. Over this two-year span, the Walmart Foundation has supported The Arc@ Work and chapters of The Arc located across the country in training more than 2,000 individuals and placing more than 800 individuals into competitive and community-based jobs. Additionally, participating chapters of The Arc have forged relationships with nearly 500 local and regional employers, connecting them with job candidates and providing staff training on creating inclusive work environments. “We are appreciative for this funding from Walmart and The Arc. Our Chapter, the Center of Hope Foundation, serving 64 towns in Central

Mass and Northern Connecticut, is excited to join the ranks and further work toward its commitment to securing meaningful, community-based employment for individuals with I/DD . We look forward to working with The Arc@Work and the Walmart Foundation on this project,” said Cindy Howard, COO. “The local Southbridge Hotel and Conference Center is very excited to join with us in this effort, with the goal of permanent employment for at least 3 participants at the end of a 6-week program. More local businesses, including the local Harrington Hospital system, will also participate in this program with similar projects with CoHF.

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News from the Chapters of The Arc

The Northeast Arc Discover and Design Program: Discovering Abilities… Through Creative Exploration in a variety of creative classes including, but not limited to, fine arts, pottery, animation, music, and theatrical performances. The program will serve both as a place to explore creative mediums as well as refine skills. The program will allow participants to express themselves in a variety of art forms with a goal of creating joy and self-fulfillment. Because an artist does not always have the luxury of spending time learning new crafts or skills, the Discover and Design program offers a comfortable environment to explore new skills. Polyvios Christoforos, an ArcWorks artist, live painting at Peabody’s International Festival.

The Northeast Arc’s ArcWorks Community Art Center is a vibrant hub of creativity that has become a cornerstone in Peabody Square. The Art Center is home to the Heritage Caning Company, Shine Jewelry, ArcWorks Gallery, Gallery Gift Shop, and the new Black Box Theater. The Art Center is open to the public with frequent guests to the Gallery, Gift Shop, Caning Company, and Theater. Northeast Arc recently launched a new program called Discover and Design. This program gives artists supported by the Northeast Arc an opportunity to participate

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In addition to individual programs, artists will work together on joint ventures and separately in shared space to create a sense of community. Instructors will assist facilitating conversations about the work being completed. Artists will spend time providing feedback to each other. Because viewing and seeing other works is critical in the learning process, group trips are scheduled around specific topics to allow the artist to view other works. For those wishing to participate, opportunities will be made available to exhibit work created. ArcWorks staff will assist artists in the application process for submission of art to local shows, including exhibitions at ArcWorks

Community Art Center, and the gallery at Breaking Grounds. Participants have also been supported to apply for, and complete, public art projects. Performances may also be scheduled for theater workshops and/or music workshops. The Creative Economy on the North Shore employs over 20,000 people, representing at least 12% of private sector jobs in the region. Discover and Design supports people in linking their skills and interests with employment opportunities. Discover and Design instructors work closely with Northeast Arc’s Supported Employment staff in assisting with job searches and placements. Internships and volunteer opportunities may be used to help further skills. People also will have opportunities to apply for employment at one of the Northeast Arc’s businesses, including the Caning Company and Shine Jewelry. Finally, an artist may want to expand their hobby into their own business. Northeast Arc and ArcWorks staff will work to help set up an individual business plans that will include promotions, sales and expenses. To learn more about the Discover and Design program, please visit www.ne-arc.org.

The Arc of Massachusetts


News from the Chapters of The Arc

State House Visit and MassDOT Meeting By Sophie Korpics

My name is Sophie Korpics and I’m from Newburyport, Massachusetts. I was born with Cerebral Palsy and I use a power chair to travel long distances. This summer, I started to work as an intern for The Arc of Greater Haverhill-Newburyport, which is where my advocacy story begins. While trying to get into work at The Arc office I quickly discovered the difficulties of having no curb cut. This led me to take on two major projects as an intern: advocating for the installation of a curb cut in front of The Arc office and measuring the accessibility of public transportation in Newburyport. In addition, I worked in the office of State Representative James Kelcourse, who assisted me in these projects along with my boss at The Arc, Andrea Morris. While waiting many weeks for a meeting at the State House with the Massachusetts Department of Transportation (MassDOT), I decided to make a video showing exactly how hard it is for someone in a wheelchair to get around if there are minimal curb cuts, which built a strong case for me. With the help of Rep. Kelcourse and the support of Andrea, I was able to finally get my meeting! I felt so happy and proud for accomplishing everything that I set out to do. Because of my video and what I said at the meeting, I was able to do something about the

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transportation issue and the parking issue at The Arc of GHN. What I learned from this experience is that videos can be a very useful and powerful medium in terms of making a case, as it shows the facts and truth which makes it hard to ignore. I also learned that when dealing with government and advocacy, it sometimes the process takes a long time, but you have to be persistent and stick to what you believe in. If I had given up on the issue after receiving pushback I probably wouldn’t have made it as far as the State House -- but I never gave up. The curb cut and accessibility is now in Riverbrook, motion! I hope that anyone who reads this will view it as a great resource to learn more about selfadvocacy and living independently with a disability. Every time I work on a project like this it helps me to learn how to better use my own self-advocacy skills in real life situations that I experience on a daily basis. 

Representative James Kelcourse and Sophie Korpics

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News from the Chapters of The Arc

The Value of Coming Together and Staying Together By Stacy Bellavia, Manager of DDS Programs, The Arc of Greater Haverhill-Newburyport

“We cannot hold the torch to light another’s path without brightening our own way.” Ben Sweetland Within the human services community, our Direct Care staff can sometimes feel under-appreciated and undervalued. The staff on the front lines play difficult yet important roles in the lives of those we serve. At The Arc of Greater Haverhill-Newburyport, we value our direct care staff, appreciate their hard work, and always look for opportunities to recognize their efforts and commitment. One of the ways in which we do this is with our quarterly Real Lives Award. One of our amazing

field staff, nominated by office staff or the people we support, is presented with a certificate of appreciation and a generous gift. This last year we also had our first Field Staff and Family Appreciation celebration to honor our families, providers, and staff who tirelessly make a difference to those we serve. We strive to honor their hard work and dedication; their compassion never goes unnoticed.

I’m personally humbled by those who share their stories with me. Oftentimes, I’m able to hear stories from our staff that make me laugh, bring tears to my eyes, and warm my soul. I’m moved by those who are so humbled by the work they Let us help you plan. do. In the human services field, We help families build a comprehensive plan for their we often make future and for their child’s lifetime care and happiness. sacrifices in order » Comprehensive Special Needs Planning to change lives; » Investment Management however, most » Independent Insurance Strategies of us soon realize » Trustee Services that through this Planning is about more than the moneyprocess the lives It’s about a full life. changed were Talk with us today to plan for tomorrow. our own. We have always attracted Cynthia Haddad,CFP® staff to this agenJohn Nadworny,CFP® Alex Nadworny,CFP® cy who share our values, and when 1004 Main Street interviewing staff Winchester, MA 01890 we often ask the A specialty practice to Shepherd Financial Partners 781.756.1804 question, “Why www.specialneedsplanning.com do you want Planning and investment advice offered through Shepherd Financial to work in the Partners, LLC, a registered investment advisor. Securities offered through LPL Financial, member FINRA/SIPC. Special Needs Financial Planning, Shepherd human services Financial Partners, and LPL Financial are separate entities. field?” These are

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some of the best answers I’ve received: “Because I’ve been fortunate in my life to be independent and strong and live a full and happy life, I want to help others to have that too, even if things come with more difficulty. Everyone deserves to feel like they’ve lived a happy life” “I’ve always wanted to work with people. I love the idea of working with people who need help. I want to help others and spend my time doing something that actually makes an impact.” The important work of our valued staff can sometimes feel isolating, as they often work independently in the field. As the social media world evolves, we are looking more and more to this platform to help us stay connected with people in our community. In an effort to communicate more effectively with our staff and providers we have created a staff-only group through our Facebook account called ‘”Arc Field Staff and Providers.” We have invited our colleagues to join this group, to facilitate greater communication. We are hopeful this page will allow us to send out important information to everyone when time is limited, including weather delays and office closings. The most important role of this page is to share information that helps our work and creates a supportive community, and it will also be a great way to share upcoming events with one another. It takes a village they say…, and our goal is to stay connected and empower each other to continue doing what we love.

The Arc of Massachusetts


News from the Chapters of The Arc

More than 1,200 Marchers Join the 12th Annual Buddy Walk of the Berkshires Berkshire County Arc returned to participate in The Walk, and there were many new faces supporting a great cause.

A group of Buddy Walkers

The 12th Annual Buddy Walk® of the Berkshires was held on Saturday, September 22 and included more than 1,200 participants. The event is hosted annually by the Berkshire County Arc Down Syndrome Family Group. It was a perfect fall day in the Berkshires. Many families and friends of

Aaron Robb, principal of Wahconah Regional High School and family member of the Berkshire County Arc Down Syndrome Family Group, and Kenneth W. Singer, President and CEO of Berkshire County Arc, along with State Senator Adam Hinds and State Representative Paul Mark, addressed the crowd. They continue to be impressed with the level of support and generosity from the Berkshire community and said that they are consistently proud to see the com-

munity supporting one another and the great initiatives in the county. Everyone who was a part of the event, especially the Berkshire County Arc Down Syndrome Family Group, was thrilled about the support received and a great time was had by all. The Walk, which is a one-mile walk that starts and ends at Craneville Elementary School in Dalton, was followed by music from Berkshire Hills Music Academy, a raffle, and various children’s activities such as face painting, balloon animals, hayrides and a photo booth. Food and refreshments were also served following the walk.

Enterline Grant Awarded for LifeLinks’ TechLinks Program TechLinks was created by the LifeLinks clinical staff in 2013 to address the unmet and unfunded need for the assessment for, acquisition of, and access to assistive technology. Funded completely by donations and grants, individuals are assessed for potential areas in which assistive technology may help with independence and low and high-tech equipment is purchased for the individuals’ direct use. Assistive technology (AT) is any device or equipment that maximizes independence to make the everyday world more accessible, expand access to integrated community living,

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and to reduce barriers to ensure people have a full life. With assistive technology, individuals have more control and ability to make choices in their own lives; decrease dependence on others to perform personal care and household tasks; participate more fully in life activities at home, work, and the community; increase communication and ability to interact with others; and develop and maintain relationships. TechLinks is effectively and efficiently offering these opportunities one person at a time, utilizing all types and modes of assistive technology. In a world where technology is used

every day by everyone, use of tablets, computers, smartphones and their applications make life easier, serve as a social network, and provide instant access to information. The Enterline Grant awarded $10,000 to TechLinks to provide funds to help put technology within reach of every person served in LifeLinks programs. The funds will be used to purchase smart boards and smart home technology to give individuals free and ready access to the internet, ability to utilize apps that help with independence in one’s home and day environment, and create opportunities for people to build their own social networks.

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News from the Chapters of The Arc

BAArc-United Way Collaboration Results in Successful Outcomes By Kathy Kerwin

a blow her death was on many levels for this family! In addition to coping with his own grief, Schamira’s dad now had to be both a mother and father to a very young child with special needs. He has struggled to keep a roof over their heads, to buy food and diapers for Schamira, to maintain his employment as a cook, to find reliable and affordable childcare, and to keep his old car on the road. Throughout the past 3 years, he has found support and assistance at the Brockton Area Arc Family Support Center and its Haitian Family Support Group. Schamira

Schamira is a beautiful 6-year-old girl who loves music, dancing, dressing like a princess, and spending time with friends. She loves taking photos and is really quite good at it! Schamira also has Down syndrome. She lives with her hardworking father, a widower who is a naturalized U.S. citizen, in Brockton. A week before Schamira turned 3 years old, her mother died after a year-long battle with cancer. What

the Family Support coordinator late one afternoon to say that the medical supply company he used was not able to deliver Schamira’s diapers due to a problem with her Masshealth coverage. He had no money to purchase the needed diapers...what was he to do? The coordinator accessed BAArc’s United Way Emergency Funding so that he could purchase a large box of diapers to get them through the emergency. The Haitian Family Support Group, which meets monthly at BAArc, has provided Schamira with many honorary aunts, uncles and grandparents. Her dad has found friends who support his efforts to raise his beautiful daughter. The Family Support coordinator has helped them navigate a complex service delivery system for more than 3 years. And the United Way has given them valuable help just when it was needed. This family’s story illustrates that it really does take a village to raise a child. We thank the United Way for being part of their village!

The BAArc Family Support coordinator has connected the family with important supports, including the Department of Developmental Services. The Coordinator has helped them get through many difficulties such as not being able to pay for food or rent at times. During the past winter, Schamira’s dad was thrilled to receive a new winter jacket for his daughter from United Way’s Warmer Winters initiative that BAArc participated in. Then in the spring, he called

Save These Dates! January 22, 2019

Supporting Families Advocacy Day and

The Arc Welcomes New Legislators – State House

March 6, 2019 20

The Arc/MDDC Annual Legislative Reception – State House The Arc of Massachusetts


News from the Chapters of The Arc

The Arc of South Norfolk “ALEC” Program Reaches a Milestone:

Over 40,000 First Responders Now Have a Deeper Understanding of Autism By Susan Tufts Kagan - Director of Development

The Arc of South Norfolk’s Autism & Law Enforcement Education Coalition (ALEC) Program trains fire fighters, police officers, and EMS personnel on the best practices to follow when involved in a crisis situation with someone who is diagnosed with autism. Through the ALEC program, first responders learn directly from a colleague who has the professional knowledge of the law enforcement field, as well as the personal experience of having a loved one diagnosed with autism. The program is supported in Massachusetts by the Department of Developmental Services (DDS) and led by the ALEC Project Director, Bill Cannata, who is a retired fire captain. ALEC reached a major milestone in May 2018 by training its 40,000th first responders. Thanks to the leadership and support from the Commonwealth of Massachusetts and private partners like Bailey’s Team for Autism (a regional non-profit organization supporting organizations and individuals who fund research and/or provide training, resources, services and aid to individuals living with autism spectrum disorders and their families), ALEC training has taken off not only in Massachusetts, but also in Rhode Island and Connecticut. ALEC training programs have been conducted in 36 states. ALEC has also provided

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programs within statewide agencies including the Municipal Police Training Committee academies, the Massachusetts Bay Transportation Authority, and the Massachusetts State Police Academy. ALEC provides opportunities for parents and people with autism to learn safety skills and to discuss with parents and caregivers ways they can connect with the 911 emergency systems in their state. People with autism are up to seven times more likely to have 911 encounters than people in the general population.   As we encourage community inclusion, community members and first responders need to have an awareness of and acceptance of people of all abilities.  Our goal is to raise awareness of the benefits of this type of training, and we hope that more law enforcement entities will engage in quality professional development opportunities offered by the ALEC program. To that end, The Arc of South Norfolk recently produced a research report evaluating the effectiveness of the ALEC program. A professional and objective program evaluation provided by the University of New Haven’s Henry C. Lee College of Criminal Justice and Forensic Sciences included pre- and post-

tests that were analyzed by two professors, David E. Lambert, Ph.D., and Kevin Barnes-Ceeney, Ph.D., and a candidate for the Master of Science in Criminal Justice, Bailey McGinnis. The evaluation team worked with The Arc of South Norfolk to determine a pre-test/post-test and assessed knowledge changes on specific topic areas covered during ALEC training. Results from this evaluation were overwhelmingly positive and we will be publishing results from the complete report, “Autism Spectrum Disorder (ASD) for First Responders Professional Development Program Evaluation: The Arc of South Norfolk,” in multiple law enforcement publications. We are excited about continuing to evaluate the effectiveness of this program, and to generate more interest in implementing the ALEC curriculum. The next phase of ALEC is to partner with local schools to provide training to educators, school administrators, and staff. We are eager to add this component to our training menu of options. If you are interested in receiving a copy of the report or getting involved with the ALEC program, please reach out to us at info@ arcsouthnorfolk.org.

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News from the Chapters of The Arc

Day Habilitation Intern Program: An Increasingly Dynamic Program That Benefits All Involved By Laurie Hill, Charles River Center

“I have really seen what patient-centered care is like because each individual has so many specific needs and is so different, so unique.” Neha Paranjpe, graduate student at MGH Institute of Health When Carol Alden joined the Charles River Center as the vice president of the Day Habilitation Program in 2010, she had a special interest in growing the internship program. In her experience, interns had been a positive addition to the mix of staff — asking questions and bringing a fresh perspective from their current educational background. She began making connections with various schools in the Boston area. After a few years, the number of interns had increased to a steady four or five each year. Then the growth of CRC’s network of schools began to yield more opportunities. Day Habilitation is now well on its way to hosting more than nine interns by the end of 2018. One of the reasons for the success of the program is Carol’s willingness to take interns from all levels of education. Interns range from high school students fulfilling their community service requirements to undergraduate and graduate students majoring in health professions. Recently, a new collaboration has been arranged for a grant-funded research project with an MIT PhD candidate and an MIT professor. Student interns have come from Needham High School, St. Sebastian’s School in Needham, Wellesley High School, Lasell College,

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Leslie University graduate programs, Massasoit Community College, the MGH Institute of Health* graduate school, and Nazareth College. When a college or post-graduate level student comes to the Charles River Center as an intern, there are various expectations and requirements to be met. Charles River develops and modifies a schedule for the student, provides training, conducts weekly observation and supervised hours with the student, and coordinates scheduled meetings with the school’s placement supervisor. Charles River also provides the school with midterm and final evaluations of the student. A graduate student in SpeechLanguage Pathology at the MGH Institute of Health, Neha Paranjpe, spent her final semester in the Day Habilitation Program. Charles River Center is able to have speech pathology interns because they have Gayle Greenstein and Carol, both licensed SLPs, to provide oversight. Neha says that during her time here, “I did whatever Gayle does as a speech pathologist. For example, we went through each Day Habilitation group one-by-one, ran goals and reviewed them, provided feedback and strategies to staff to make sure that the goals written

for each individual were really what was needed and effective. That is probably one of the biggest things that I have gotten out of being here. I have really seen what patientcentered care is like because each individual has so many specific needs and is so different, so unique.” The flexibility of the program is also reflected in how it adapts to the interests of the student. Carol says, “Last year we had one undergraduate student from Lasell College who was majoring in Human Services. She came through the door saying, ‘I really think I might like to be an OT.’ We had never done it before, but I said, ‘Okay, we’ll customize your internship program.’ Afterwards, she wrote about her experience at the Charles River Center in her graduate school application and has been accepted at the MGH Institute of Health graduate program in occupational therapy. This fall another undergraduate intern is coming from Lasell who has expressed an interest in therapy, so we are going to customize her internship as well.” Both host and student benefit from the intern relationship day-to-day, but there is another interesting benefit. While each student has to accomplish their school’s requirements while in the program, they are also asked to participate in a special project while they are at Charles continued on page 23

The Arc of Massachusetts


News from the Chapters of The Arc

Dancing with the Stars – Samantha style By Robin Ellington, CLASS / The Arc of Greater Lawrence

The day starts early for Director Samantha Kuczun at her Special Stars Performing Arts Program in Salisbury, Mass. On any day she might prepare a dance troupe, decked out in their satin poodle skirts and sequins, for that day’s performance; lead a fitness class in stretching exercises; or teach working with a partner in a hoedown dance routine to 15 dance students. One thing Samantha does every day: she warms up her classes with her bright smile. Since 2014, she and her Special Stars curriculum have changed how performing arts are taught to those with disabilities, effecting positive outcomes for countless Special Stars, with joy and humor. CLASS has a fan base of about 25 individuals a year who ask to be part of her program time and again. CLASS individuals began attending the program in early 2015 – that was more than eight performances ago. “All classes culminate in a live performance for friends and family,” Samantha says. “Students learn to express themselves through creative group music and movement activi-

ties while they gain confidence and appreciation for the arts at their own pace. We offer personal attention to meet each person’s specific needs.” With a mission “to provide access to the performing arts for those with special needs,” Samantha says, “we inspire, encourage, and empower.” In just four short years, Special Stars has affected the lives of more than 50 individuals at CLASS. They’re proud: They dance, they act and they sing, memorizing the lyrPut your hands up! Charlene, Linda and Jonathan join ics and learning the hand the others and their staff with group warmups before beginning their performance practice. gestures and movement, all while being coached CLASS develops community colup to and during their laborations with organizations like performances. Samantha is with Special Stars to provide opportunithem through it all. ties for individuals to develop self This fall, Samantha plans to offer an advocacy and confidence, to build inclusive dance program. social and daily living skills. And have fun. “We are truly looking forward to bringing the entire community into our classroom and creating interactions with all,” Samantha says.

As far as CLASS individuals are concerned, Samantha’s dance card is full.

Day Habilitation Intern Program continued from p. 22

River. The form it takes is up to them. Carol says, “We provide the topic and it can take any form, an investigation or a presentation for example. In expressive therapy they

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have someone who presented on sensory modalities. Neha Paranjpe investigated speech-language assessment tools for this population.” On the whole, Carol says, “It has

worked out really well for us as a program. We get a lot out of it and the interns get a lot out of it.” *A graduate school founded by Massachusetts General Hospital

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

Achieve with us. Berkshire County Arc Participates in Williamstown Theatre Festival Production between the need to protect what is theirs and the desire to grow and prosper, the people of the town fight to determine their future.” The play, by Obie Award winner Lucy Thurber, was directed by Lee Overtree.

Let the show begin: Berkshire County Arc participants in the Williamstown Theatre Festival

For the second year in a row, Berkshire County Arc was invited to participate in a summer stage production at the Williamstown Theatre Festival. This year’s production, Taiga in the Berkshires, part of the Williamstown Theatre Festival’s COMMUNITY WORKS initiative, culminated on Sunday evening, August 12. “In Taiga in the Berkshires, in a town in Western Massachusetts, outsiders threaten the safety of Taiga, a beloved ancient monster. Caught

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Eight individuals from Berkshire County Arc’s Center for Development with brain injuries and other developmental disabilities attended regularly scheduled rehearsals at the Williams Inn in Williamstown preparing for their roles in the play. Williamstown Theatre Festival approached Berkshire County Arc in November of 2016 about participating in this initiative for the initial collaboration of “Once Upon a Time in the Berkshires,” and Kenneth W. Singer, Berkshire County Arc President and CEO, was more than willing to partner with this great opportunity. “We had such a great time with this play last year, and all of the staff and individuals at

List of Advertisers The Arc of South Norfolk Berkshire County Arc Economised Time Services, Inc. FletcherTilton PC PLAN of Massachusetts and Rhode Island Riverbrook Special Needs Financial Planning Specialized Housing SUPPORTbrokers The Guild School

Our advertisers help support the mission of The Arc of Massachusetts. Berkshire County Arc had an amazing time! The cast and crew at the Williamstown Theatre Festival make the process seamless for us to be involved; even coming down to our Lee, MA site to rehearse”.

The Arc of Massachusetts

Profile for The Arc of Massachusetts

Advocate Fall 2018  

Advocate Fall 2018