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Advocate Winter 2019

We Can Solve the Workforce Crisis By Ellen Taverna and Leo Sarkissian

disabilities (I/DD) is at risk in the Commonwealth of Massachusetts. We are facing a severe workforce shortage of Direct Support Professionals (DSP) and frontline managers and an inadequate pool of qualified clinical specialists in disability services. The quality of care and the quality of life for individuals with intellectual and developmental

A well-trained, fairly-compensated DSP workforce is essential to providing the necessary supports and services to people with

Meet The Arc’s 2019 Gala Champions! and teaching the next generation of doctors. They have overcome challenges themselves, and their stories will inspire you. At our 2019 Gala, Leading by Example, The Arc of Massachusetts will be recognizing four individuals with intellectual and developmental disabilities who are true leaders in our field. They are making a difference by advocating at the State House for much-needed services and funding; educating the community; forging lifelong relationships in the community;

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Advocacy Champion: Jillian Berube Jillian is passionate about making a difference. As a member of the Massachusetts Down Syndrome Congress (MDSC) Self-Advocate Advisory Council, she is helping families advocate for the inclusion of their children with disabilities in a school setting. In November 2018, she delivered the Self-Advocate continued on page 5

I/DD where they live and work. Massachusetts’ current wage structure of DSP workers combined with our state’s recent raise of the minimum wage and high cost of living have exacerbated the workforce crisis already hampered by low wages, poor benefits, limited training and investments, high turnover, and a shortage of staff. These problems have led to a crisis that threatens the safety of continued on page 3

Inside this issue... Article Page Operation House Call..................6 Government Affairs......................7 The Friendship Corner..................8 Education and Training..............10 Becker Center............................12 News from the Chapters............15


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 Hillary Dunn Stanisz Jim Ragazzo Rosalie Edes Renald Raphael Christopher Fox, Ph.D. Mary Valachovic Karen Mariscal 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 Jim Ross Director, Widening the Circle Rich Fagan Financial Director Christopher Jenkins Financial Officer Katerina Daley Development & Digital Media Associate

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The Prudential Tower lit up “The Arc Orange” in honor of The Arc of Massachusetts By Katerina Daley

On Saturday, December 29, The Arc of Massachusetts took part in the Prudential Center, Boston’s 10th Annual 31 Nights of Light program. Every night during the month of December, the Prudential Tower is lit up in a different color to honor the work of a local nonprofit organization. That evening, the Prudential Tower was lit up in “The Arc Orange” in recognition The Prudential Tower is lit up in The Arc’s Orange of our work to enhance the lives of individuals with intellectual and developmental disabilities. We were delighted to once again take part in this program, which we last participated in during the 2016 season.

(L-R) Brian Heffernan, Scott Lentine, Helen Coppenrath, and Tracy Atkinson

As part of our lighting event, a ceremony was held in the Prudential’s Center Court, featuring performances and remarks by three talented individuals with intellectual and developmental disabilities, including autism.

Helen Coppenrath, a 15-year-old student with autism, entertained the crowd throughout the evening with performances of assorted Christmas carols and seasonal songs on the saxophone. Brian Heffernan, a 28-year-old public speaker with Down syndrome, shared his stories of social inclusion in school and the workforce; his experiences with the MAICEI program; and his navigation of public transportation. Scott Lentine, a 31-year-old with autism, shared two of his personal poems about life as an adult on the autism continued on page 5

The crowd gathers at 31 Nights of Light

TheArc ArcofofMassachusetts Massachusetts The


We Can Solve the Workforce Crisis continued from p. 1

The Arc’s constituents and their families. Here are some of the facts: • 72 % of Massachusetts human service providers report that it has become increasingly more challenging to fill job openings over the past three years • A national 2017 survey of family caregivers reported that 9 out of 10 (92%) caregivers indicated difficulty with finding DS • 48% of the caregivers were stressed or very stressed by having to provide care for an individual with I/DD In Massachusetts, we face additional challenges in that we have low unemployment rates, our cost of living was recently cited as the third highest among the 50 states, and the Bureau of Labor Statistics demonstrate that the mean DSP salaries are lower than the mean wages of janitors and file clerks. The Arc of Massachusetts has published four strategy recommendations to be considered by the Governor Baker’s Administration. These strategies are championed by our Steering Committee on Policy and Advocacy and they have hit a chord with many families and organizations across the state. We believe these and input from other stakeholders could be reviewed by a commission, which would release a four-year plan to address the crisis beginning in Fiscal Year 2121 (starting July 1, 2020).

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Request for 2020: In the meantime, The Arc recommends that Chapter 257 rates be uniformly impacted with increase increases for all positions paying $75,000 or less per year, with an entry level minimum of $17 per hour in FY’2020 of Rep. Denise Garlick filed a bill in the House (at press time, HD#1130), “An Act Relative to Meeting the Human Services Workforce Demand.” Sen. Barry Finegold is the Senate lead on this bill. This would provide a muchneeded jumpstart to address the crisis and address new challenges posed by the minimum wage law and employer medical assistance payments (EMAC). We recommend four strategies including innovation and system design improvements. For the full proposal please go to arcmass.org/workforce.

Strategy 1: Workforce Salary and Benefits Investment Significant investment is needed over the next few years to achieve the entry and mean salary levels and benefits to recruit and retain a stronger, more qualified DSP workforce including front-line managers. Given staff roles, this goal should be benchmarked to health and education sectors. Strategy 2: Innovation and System Design Improvements • Implement innovative practices, such as the Individuals and Families First program, including self or family-directed options to promote individuals with I/ DD community integration and independence. continued on page 4

Thank You for Your Support! The Arc of Massachusetts would like to thank everyone who made a gift in 2018 to help enhance the lives of people with intellectual and developmental disabilities in Massachusetts. All people with I/DD, including autism, deserve equal rights and treatment, and with your help, we have been able to work to ensure a world in which they can be part of the community. For nearly 65 years, The Arc of Massachusetts has provided invaluable advocacy and support services within the community, ensuring that families can rest assured regarding the well-being, safety, and happiness of their loved ones. Donors like you -- passionate supporters, our chapters, human service agencies, foundations, and corporations – have made this work possible. Thank you all for your support! You can have a direct and lasting impact on The Arc’s efforts to make services and supports available to people with I/DD. Learn more by visiting our website www.arcmass.org or by contacting Katrin Aback, Director of Development, at aback@arcmass.org or 781-891-6270 x105.

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We Can Solve the Workforce Crisis continued from p. 3

• Close existing institutions. • Expand technology use for individuals’ advancement and service system improvements. • Review state regulations and safeguards for both adequacy and redundancy. • Develop a task force for elementary and secondary schools to expand best practices in preparing children or teens for adult life. Strategy 3: Ensure Adequacy of Clinical and Specialists Teams for Three Major Objectives • Collaborate with practitioners to support families and agencies to manage complicated situations or urgent need cases. • Provide consultation to practitioners for medical, behavioral, dental or other issues. • Offer better short-term utilization of specialists “live” or by telehealth to address specific conditions or prevent unnecessary emergency room visits. Strategy 4: Human Capital Development Implement programs aimed at the direct support labor market to increase the pool of available workers for providers, families and individuals. Improve recruitment, retention, training, and supervision of DSPs and front-line managers to better serve individuals with I/DD. The first step is to recognize the significance of the crisis. Next, we

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ask the Administration to convene policy-makers, stakeholders, and the public to develop a plan that will lead to more workers being hired and individuals with I/DD continuing to live their best lives.

require our commitment and response: this crisis can be solved. For more information and updates on The Arc’s Workforce Initiative, please visit https://thearcofmass. org/workforce/.

People with disabilities and families

Governor Baker Increases Disability Funding for FY’2020 As we went to press, we learned that several community services accounts at the Department of Developmental Services received major hikes in the Governor’s budget. Two examples are Employment, with a $22 Million increase, and the DESE-DDS program which helps teens remain with family and in their home communities. The final budget will be deliberated by the House and Senate in the coming months. Learn more at www.thearcofmass.org/ advocacy and choose the state budget. Keep up with us through the entire budget and legislative process.

In Memoriam: Paul D. Buonomo We celebrate the life and mourn the passing of Paul D. Buonomo, who passed away on September 10 at his home in North Reading, at the age of 65. Paul was the son of Joseph and Doris Buonomo, who were active members of The Arc for many years, including as leaders at The Arc of Greater Boston. Joe went on to serve as president of The Arc of Massachusetts from 1974 to 1976, and then as president of The Arc of the US from 1981 to 1983. Paul’s many health problems never deterred him from leading a full and active life. He graduated from Lexington Special Education and participated in Special Olympics, winning gold and silver medals in racing, broad jump, and basketball. An active member of St. Eulalia Church in Winchester, he took pride in being asked by his priest to assist at Mass. A train aficionado, he made many friends at the railroad yard. For the last 10 years of his life, he lived in a group home in North Reading and attended Heritage Industries in Danvers.

The Arc of Massachusetts


Meet The Arc’s 2019 Gala Champions! continued from p. 1

Keynote Address at MDSC’s 14th Annual Educators Forum.

the Department of Developmental Services (DDS).

After Turning 22, Jillian fought for a life in the community that includes employment, education, and recreation. Though her work at TJ Maxx in Leominster and attending classes at Mount Wachusett Community College keep her busy, she finds time to write lyrics and play guitar. Her personal goals include passing the High School Equivalency Test and finding a job working with children.

Anne is being recognized for her tireless efforts to advance the voices of self-advocates, her leadership in the Tools for Tomorrow project, and her ongoing work to increase participant-directed services.

Empowerment Champion: Anne Fracht Anne is Chairperson of Massachusetts Advocates Standing Strong (MASS), a state-wide advocacy organization that works to empower self-advocates through education to enable them to improve and enrich their lives. She also serves on the Governor’s Commission on Intellectual Disabilities, Self-Advocates Becoming Empowered Board, Disability Advocates Advancing our Healthcare Board, and the SelfDetermination Advisory Board of

Community Outreach Champion: Angelina White Angelina is a 24-year-old who lives in a residential setting with three other young women in her age group. In addition to her housemates, she has forged a wide network of meaningful relationships with individuals she has met through her favorite activity: road races. Angelina has cerebral palsy, developmental delays, and moderate anxiety. But since joining the Pathways to Friendship program, and with the support of one of her former program managers, turned genuine friend, Angelina has become fully included in her community of fellow racers. She has participated in over half a dozen races; taken part in purely social engagements for the first time in

her life; and learned what it means to have true friends upon whom you can depend. Education Champion: Braeden Yee At only 12 years of age, Braeden Yee already has taught classes for third-year medical students at Boston University School of Medicine as a guest lecturer for Operation House Call. He teaches new medical professionals essential skills to enhance the health care of persons with autism and other intellectual and developmental disabilities. Braeden, who has autism, is also a budding piano prodigy who has performed at fundraising events and at school. And like many preteens, he enjoys riding his bike and going to the skate park. The Leading by Example gala will be held on Wednesday, March 27. For tickets and sponsorship information, please visit arcmass. org/gala. The gala will also feature an exciting live and silent auction. Stay tuned to the website for details on how you can bid online!

The Prudential Tower lit up “The Arc Orange” continued from p. 3

spectrum seeking understanding and acceptance. The evening was emceed by Tracy Atkinson, The Arc’s Immediate Past President. Together, they “flipped the switch” and lit the Prudential Tower orange. WBZ provided media coverage of the lighting. The Arc’s Director of

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Government Affairs, Maura Sullivan, was interviewed by Liam Martin and Katie Brace on December 28 and footage of the lighting aired on the 11:00 p.m. news on December 29. To view these stories, and to see additional photos from the event, please visit www.arcmass.org/ lighting2018.

Helen Coppenrath plays the saxophone

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Operation House Call

Operation House Call

As the new year begins, we celebrate the great work and accomplishments of Operation House Call and the approximately 220 families that contribute to the success of our program. We have expanded our outreach and are excited to announce the addition of the University of Massachusetts Graduate School of Nursing to our program, which will begin in February 2019. This year, OHC grew in numbers

of students, co-teachers, and families participating. We also grew our Parent Instructor team and collaborated with Northeastern University and UMass Medical School/Shriver Center on academic projects.

OHC contributed to the publication of Dr. Dorothea Iannuzzi’s article in the Journal of Autism and Developmental Disabilities. The team included, Patricia Rissmiller, Susan Duty, Susan Feeney, Carol Curtin, and Maura Sullivan.

We were fortunate to have a team from Northeastern University conduct a formal evaluation of the program. The results were both positive and instructive for us and we will be working on implementing their recommendations.

OHC has been so fortunate to have the support of the Massachusetts Down Syndrome Congress, Advocates for Autism of Massachusetts, and champions in the medical community like Dr. Brian Skotko and Dr. Ann Neumeyer. You can find the media coverage, Dr. Skotko’s inspiring words, as well as the link to the JADD article on the OHC page of The Arc’s website. https:// thearcofmass.org/ohc/

OHC was also the recipient of two grants in 2018: from Bailey’s Team for Autism and The Doug Flutie Jr. Foundation.  We enjoyed great media coverage on Channel 4 and in the Boston Globe.

As we grow and enhance our program, OHC aims to address bias and discrimination in healthcare, while growing confident, sensitive, and knowledgeable healthcare providers.

Save These Dates! Use our online directory and job board to connect with respite and in-home caregivers, companions or job coaches. FREE subscriptions available for DDS eligible individuals and families by entering access code ddsconnect. Low-cost, private-pay and agency subscriptions also available.

www.RewardingWork.org Call us at 866-212-9675

Rewarding Work is an affiliate of TILL, Inc.

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March 6

 he Arc/MDDC Annual T Legislative Reception – State House

March 27

 he Arc of Massachusetts T Gala and Auction – Newton Marriott Hotel

April 8-10

 isability Policy Seminar in D Washington, DC

April 11

 utism Advocacy Day – A State House The Arc of Massachusetts


Government Affairs

Gearing Up for the 2019-20 Legislative Session By Maura Sullivan, Director of Government Affairs

As we head into the 191st legislative session, The Arc has two major initiatives. We will continue to focus on family support through our Supporting Families Campaign, and this year we are launching another campaign to help take on the workforce shortage crisis.

are extremely hard to fill. The Arc aims to influence the budget and policy in order to increase rates of pay and bring more people into our workforce to care for people with intellectual and developmental disabilities including those on the autism spectrum.

Supporting Families: We know there are an increasing number of aging caregivers who are taking care of family members with disabilities, and they need more assistance. We also know there are families with high needs for support due to caring for a loved one with challenging behaviors and/or complex medical issues. We are also concerned with additional supports for families with multiple children with disabilities to care for in their homes. These priorities will be reflected in our budget advocacy for DDS line items for Family Support, the DDS-DESE program, and Turning 22.

As we roll out this campaign, we will partner with organizations across the state that share our concerns about the workforce crisis.

The Workforce: The Arc has reached out to the Governor and the Administration to communicate the need to address the workforce crisis and our strategy for doing so. There are simply not enough people entering the direct care workforce, and the ones that do are often short-term employees due to low pay, low benefits, not enough training, and no incentives for a career path. The workforce includes direct support professionals as well as management and clinical staff – we are hearing from providers and families that these positions

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Legislation: As always, The Arc has a powerful platform of legislation to file for the new session. This platform includes our top Riverbrook, priority bill from family trusted last session, for over 50 years, Nicky’s law. As providing you have probhigh quality ably heard, this bill to create an residential and abuse registry innovative day was derailed services to at the end of exceptional the informal women aged session. The bill 22 and up. has strong support from the F Senate and the House and we not just are encouraged a home… that the bill will a life. be prioritized in the new session. The Arc is re-filing our healthcare bills

community opportunity respect / safety

which include Operation House Call and Hospital Training in Autism and Intellectual/Developmental Disabilities. We are also re-filing Criminal Justice Training in Autism, Accessory Housing Units, and the Loan Repayment bill. New to our platform is a bill relative to Supported Decision Making. Stay tuned for our next steps in advocacy as the Governor releases his budget and our bills move to hearings. For more information, contact Maura Sullivan, Director of Government Affairs at sullivan@arcmass.org

where exceptional women thrive Stockbridge, MA / 413 298 4926 / riverbrook.org

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Friendship Corner

Friendship: A Key to Health and Happiness By Phoebe Goodman

Having a network of friends, family, and casual acquaintances is key to living a “good life.” As Aristotle said, human beings are innately social and desire connection. These connections prove not only to improve one’s quality of life, but research shows that having meaningful connections has significant health benefits for people with, and without, intellectual disabilities (ID). While working at another local non-profit, my colleague and I started leading monthly yoga classes for participants from the

day program. We continue to lead these classes, despite my role at a different agency. Norma is a participant in this yoga group and fell in love with her yoga practice. After moving on from my position at that agency, Norma and I became friends. We started attending classes at a studio in her community. It’s a step towards a physically and mentally healthier lifestyle. As she says to the other yogis, “I leave my stress on the mat.” The friendship I have with Norma is just as important as the physical activity we’re doing together. A focus on health is essential, as people with ID are already at risk of a shortened lifespan. “Mortality rates in persons with ID were approximately four times higher than the general population, and during the period of 2003-2012, people with ID were, on average, dying 19 years earlier.”1 1Journal if Applied Research in ID; 2015

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Social isolation and loneliness have been tied to poor health in various areas, including cardiovascular disease, obesity and early death.2 When people don’t hold valued social roles in their communities, loneliness can set in. Angela Amado researched loneliness in people with ID. “Fifty percent of those self-reporting stated that they sometimes felt lonely, and one in three who reported experiencing loneliness found it difficult to make friends.”3 Often this is because people lack friends and support outside the service system. Amado continues, “Studies that have examined people’s social networks have found that their networks are primarily made up of paid staff, family members, and others with disabilities…The majority of adults with an ID had someone to confide in; however, three quarters reported that their confidant was a key worker/support person.” Imagine the loneliness one may experience knowing that their only confidants are paid to spend time with them. Douglas Nemecek, MD, Chief Medical Officer for behavioral health with Cigna, shared this staggering research, “Loneliness has the same impact on mortality as smoking 15 cigarettes a day, making it even more dangerous than 2 Journal of Policy and Practice in ID; 2010 3 Amado, Angela N., et al. “Social Inclusion and Community Participation of Individuals with Intellectual/Developmental Disabilities.” AAIDD, vol. 51, no. 5, 2013.

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The Arc of Massachusetts


Friendship Corner Friendship: A Key to Health and Happiness continued from p. 8

obesity.”4 It is imperative that we focus energy towards helping people with disabilities live longer, healthier lives through community membership. It is also worth noting that some people with disabilities have a higher likelihood of experiencing social isolation. “Older age, more severe levels of ID, and living in residential centers often meant having fewer members in one’s social network.” (Amado, 2013) Special attention must be paid to those at higher risk of loneliness. Building social connections should be an essential function of staff supporting people with ID. Increasing one’s social connections has been shown to improve overall physical health and improve quality of life, but providers sometimes struggle to help people access their communities in meaningful ways. “Most adults with an ID had a hobby and engaged in eating out, attending church, shopping, and going to the hairdresser and cinema, but seldom with friends outside their home.” (Amado, 2013) Why are people with disabilities limited in their connections? Some providers are misguided in their attempts to help people with ID to fully integrate into their respective communities. In some cases, community access is limited to “outings” that lack true community integration. Researchers 4 Douglas Nemecek, M.D., MBA Chief Medical Officer for Behavioral Health, Cigna, 2018

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outline what meaningful community membership should look like, “Community integration should encompass more than simply being in the physical presence of the general public and participating in activities.”5 To further clarify this point, “Rather, integration experiences demand attention to the role of the social components of community life, particularly those that occur in natural settings outside the (provider) system.”6 When providers pay attention to the importance of a valued social role in one’s community, they are more likely to help people achieve true community membership. By having meaningful relationships, people with disabilities are less likely to experience social isolation, loneliness, and poor health. Friendships between people with and without disabilities proves to not only be positive for the person with a disability, but those without disabilities also reap the health benefits of these friendships. A community that embraces all its members can decrease discrimination, stigma, and increase longevity for its’ members. The evidence is clear that meaningful relationships play a major role in improved overall quality of life, physi5 Townley, Miler & Kloos, 2013, p.85 6 Kloos & Shah, cited by Townley et al., 2013

Norma and Phoebe before yoga class.

cal wellness, longevity and safety. There are many techniques to help support friendships. The Arc of Massachusetts toolkits have strategies for supporting friendships where people work and live. To download a free copy of the “Making Friends Where You Live” toolkit, go to https://thearcofmass.org/toolkit/. By supporting people in building friendships in their communities, we are helping someone live a longer, healthier, happier life. Through supportive friendships and social connections, the “good life” is attainable for everyone.

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Education and Training

Webinars Tuesday, February 12, 2019 12:00-1:00 PM Getting from Here to There: Transportation During the Transition Years Presented by: Rachel Fichtenbaum and MaryEllen MacRae FREE Thanks to a grant from MPTE! Join MaryEllen MacRae of Easter Seals Massachusetts and Rachel Fichtenbaum of MassMobility for a discussion of transportation options available to support transition-aged students with disabilities across Massachusetts as they prepare for life beyond the classroom. Participants will learn about transportation services available to people with disabilities in communities around Massachusetts, explore connections between transition-aged youth and transportation opportunities, and gain a greater understanding of how to effectively infuse the topic of transportation when discussing transition goals. We will also highlight creative transportation initiatives around Massachusetts, share a new tool developed by Easter Seals, and feature resources available to individuals, families, and organizations to help solve the transportation puzzle. Rachel Fichtenbaum joined MassMobility in 2011 as Mobility Information Specialist and became the EOHHS Mobility Manager in 2017. She enjoys traveling around Massachusetts and helping organizations identify and implement best practices and innovative strategies to help seniors, people with disabilities, and others improve their access and mobility. Prior to joining MassMobility, she worked in workforce development. She has a Master of Public Policy in Social Policy from the Heller School at Brandeis University. MaryEllen MacRae received a Bachelor of Science from Merrimack College and began her career at Massachusetts Rehabilitation Commission as the Turning 22 Coordinator in the Independent Living Division for twelve years. In September 2016, MaryEllen joined the Easter Seals team as the Director of Community Support Services, overseeing Transition, Employment and Veterans Programs. MaryEllen also created the newly launched College Navigator Program serving college students with disabilities around the greater Boston area.

Tuesday, March 19, 2019 12:00-1:00 PM Credentials to Careers Presented by: Rosa Ordaz, Jeff Gentry, and Jan Hollenbeck FREE Thanks to a grant from MPTE! Definition: According to the U.S. Office on Disability Employment Policy in December 2018, only 20.7% of Americans with disabilities were engaged in the workforce. If we are going to equip 70% of Americans with disabilities to join their nondisabled fellow citizens in the workforce, we need to utilize a wide array of employment strategies for transition age youth and adults. Please join Jeff Gentry and Rosa Ordaz from 70/30 Partners and Dr. Jan Hollenbeck from Medford Public Schools as we explore the array of entry-level employment, credential training and employer driven workforce development strategies that can equip you or your loved one with disabilities to enter the workforce. Building an inclusive workforce is doable and worth doing! Please join us for this engaging conversation! Rosa Ordaz has over 5 years of experience strengthening, developing, and implementing services to empower adults and transition-aged youth of all abilities into the community and towards employment. In her former continued on page 11

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The Arc of Massachusetts


Education and Training

Webinars role of Director of Transition and Community Services at Triangle, Inc. Rosa was responsible for designing, implementing, and overseeing five community based day supports and employment programs that served over 160 individuals on a daily basis across four locations as well as Pre-employment Transition services for 45 students. Jeff Gentry has invested his career in connecting people with disabilities to careers and the community. Over the past decade, he has significantly expanded School-to-Career transition services for youth with disabilities, helped transform Massachusetts’ largest sheltered workshop into a leading employment program, and assisted with the creation of credential-focused career pathways in healthcare and hospitality for people with disabilities. In addition to his passion for workforce development, Jeff highly values and enjoys partnering with self-advocates to create innovative initiatives that equip people with the leadership development, personal safety and advocacy skills they need to live fulfilling lives in the community. Jan Hollenbeck, OTD, OTR/L is a Special Education Administrator responsible for secondary transition, related services, assistive technology, and Section 504 for the Medford Public School District. Dr. Hollenbeck is a national presenter and a regular provider of professional development for the Massachusetts Department of Elementary and Secondary Education. She has authored several chapters and articles on issues pertaining to the provision of secondary transition and related services in public schools.

Legislative Advocacy Webinars and Updates! Thursday, January 31, 2019, 12:00-1:00 The Direct Support Workforce Crisis and Reflections on the Governor’s Budget Presented by Leo Sarkissian and Maura Sullivan, The Arc of Massachusetts

Wednesday, February 6, 2019, 12:00 PM Join Leo Sarkissian on Facebook Live! Leo will reflect on new developments and action steps needed!

Plan Ahead – The Transition Conference is Coming! Planning for the Transition Conference has begun! The Arc has reserved the College of the Holy Cross on Saturday, November 16, 2019 and has confirmed Jane St. John from University of Missouri at Kansas City as our keynote speaker. Jane is a Mom and also one of the creators of Charting the LifeCourse Framework. She

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also specializes in Transition and Family Support, so we are thrilled she is available! That being said, the theme of this year’s conference will be Charting the LifeCourse during the Transition Years. Watch Notes from The Arc and future issues of Advocate for more information!

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Becker Center for Advocacy

Older Caregivers Speak Out! Others noted that there is a lack of information about what options are available and few choices for housing, even in emergencies.

Older caregivers gather at Brandeis to share concerns about the future.

This Fall, the Becker Center for Advocacy aligned with partners throughout the Northeast and Greater Boston to sponsor Older Caregiver Forums. The purpose of the forums was to bring together families and service agencies to learn about how to best support older caregivers of adults with disabilities. We held facilitated discussions to learn • what was going well • where they experience gaps

• what is most important to them and for service providers to understand The workforce issue was a primary concern as caregivers spoke about their inability to find direct support staff such as PCA’s, mentors, respite workers, and nurses. The groups expressed their frustrations regarding the low wages to attract staff, finding staff that were qualified and trained in problem solving, critical thinking, and safety.

After the conversations were held, facilitators shared their findings with the groups. Caregivers also learned about what was available through Elder Services and Department of Developmental Services. Several family members also shared their stories and why future planning was critical. Evelyn Hausslein spoke about the critical need for future planning, and is currently involved in a PersonCentered Plan with SUPPORTbroker Barbara Pandolphi. Evelyn spoke of “letting go” to be tremendously difficult but also very important as you plan for the future. In Haverhill, several families from the Lawrence area attended and many had just experienced the gas leak crisis -- having to evacuate their homes and communities. The continued on page 13

Yes! I want to help The Arc of Massachusetts meet the Challenge! Please print Name _______________________________________________________________________________________________ Address _________________________________________City, State, Zip ________________________________________ Email ___________________________________________Phone ________________________________________________ Amount of gift__________________________________________________________________________________________ Please mail your check to: The Arc of Massachusetts, 217 South Street, Waltham, MA 02453. You may also pay online (www.thearc.org; click on Donate) ______ I would like someone from The Arc to contact me about making a gift.

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The Arc of Massachusetts


Becker Center for Advocacy Older Caregivers Speak Out! continued from p. 12

session, which was translated into Spanish, heard about the need for emergency services as well as information in their language being available. They were also grateful for the supports that they had. One parent who spoke told the group that it was her goal to help her daughter become the most independent she can be as she will not be in her life forever.

Luz (from Lawrence) shares her goals for her daughter. Interpreter Shari Bertys (Fidelity House Human Services) translates into English.

Special thanks to the Forum Sponsors: North Shore: Northeast Arc, Greater North Shore Link Center, Department of Developmental Services (DDS); Merrimack Valley: Fidelity House Human services, The

ing r t ou r upcom inars i s i V e fo Sem sit eeds b e N w ial c Spe

Arc of Greater Haverhill-Newburyport, Elder Services of Merrimack Valley, The Department of Developmental Services; Greater Boston: Charles River Center, Springwell, Minuteman Senior Services, Minute Man Arc, Brandeis University, Nancy Lurie Marks Family Foundation, and Department of Developmental Services. Two additional forums are being planned for the Spring on the South Shore and in Western Massachusetts. Look for more information in Notes from The Arc or contact Kerry Mahoney (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 Frederick M. Misilo, Jr., Esq. 508.459.8059 | fmisilo@fletchertilton.com Meredith H. Greene, Esq. 508.532.3515 | mgreene@fletchertilton.com

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508.459.8000 | FletcherTilton.com

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Swampscott Alumni Reconnect Over Daughter’s Diagnosis By Paul Halloran, Lynn Daily Item

thought of his high school friend. “I remember that in my optimistic moments, I would think about Jon and really how I knew him as a peer,” Buonopane said. “Jon is not only high functioning, he is high achieving.” As the Buonopanes began to share the news with close friends, they kept hearing the same thing: You have to connect with Jo Ann Simons. Paul Buonopane right, his wife, Stefani, and daughter Felicity reconnected with Paul’s Swampscott High classmate, and friend, Jonathan Derr. (Photo by Paul Halloran)

It seems like everybody knew and loved Jonathan Derr when he was a student at Swampscott High School, and Paul Buonopane was no exception. He would see Derr at football team dinners and he had friends who played on the golf team with him. Buonopane — and many others — couldn’t help but be impressed with the fact that Derr did not let Down syndrome slow him down even a little bit. “Somewhere in the back of my mind I always respected and appreciated Jonathan,” said Buonopane, who didn’t expect to again cross paths with Derr in such a meaningful way. That changed when Buonopane and his wife, Stefani (Danahy), received a prenatal diagnosis of Down syndrome for their daughter, Felicity. As he processed the news and dealt with the accompanying range of emotions, Buonopane

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Simons, also a Swampscott resident, is Derr’s mother who happens to be the CEO of Northeast Arc. She immediately became a valued professional and personal resource. “Jo Ann has been an inspiration,” Stefani Buonopane said. “A lot of friends suggested we contact her and she was there for us.” Simons helped the family access services through Northeast Arc, coordinated by Ashley Lauranzano, including Early Intervention, physical therapy, speech therapy and a play group. More than that, she was able to speak to them as a parent of someone with Down syndrome — someone who is living a highly fulfilling and productive life. Simons said she welcomed the opportunity. “One of the great joys in my early career was talking to new parents (of Down syndrome children),” she said, “because the resources for parents didn’t exist. There was no Internet; parents had to rely on

a word-of-mouth network. Now there is an online community that parents are welcomed into by other parents.” As plans for the Swampscott High Class of 1998’s 20th reunion were formalized, Buonopane let Simons know that he would be going and he would be happy to take his friend, Jonathan, with him. Prior to the reunion, which was held in Salem (in November) Derr got to meet Felicity and have some photos taken with her and her parents. It was one of those heartwarming moments that words fail to do justice, and the Buonopanes weren’t the only beaming parents in the room. “I kept hearing about Stef and Paul, and when I figured out Paul was a high school classmate of Jonathan, it became much more poignant for me,” Simons said. “Jonathan was the only person with an obvious disability at Swampscott High at the time, so I hope his presence put a face and a person behind the diagnosis. Paul and Stefani have surrounded Felicity with such incredible support and love.” “Felicity is pure happiness,” Stefani said. “She brightens every place she enters with a smile, a wave, and a clap. She amazes us every day and we are so proud of her, already. We celebrate her Down syndrome and any challenges we have or will face are overshadowed by her joy and strength.” Reprinted from the Lynn Daily Item, with permission.

The Arc of Massachusetts


News from the Chapters of The Arc

Jay Lynch Receives 2018 Diversity and Cultural Competence Award at The Arc of the US National Convention Jay Lynch, Executive Director of Brockton Area Arc, was honored at a luncheon on November 8 at an awards luncheon during The Arc of the United States National Convention in Nashville. Jay was nominated by Leo Sarkissian, Executive Director of The Arc of Massachusetts for the prestigious Diversity and Cultural Competence Award presented by the National Council of Executives of The Arc. This is one of several Distinguished Professional Achievement Awards which recognizes leaders across The Arc nationwide who demonstrate the skills, dedication, and passion that has come to exemplify an executive at The Arc. .After being introduced by Leo, Jay made the following remarks. In the fall of 1973 this recent college graduate, and his new wife, Ginny, became Volunteers in Service to America. We were asked to come to New York City to join a group of other VISTA volunteers for a few weeks of training. Parts of the training were intense and sometimes confrontational. In the most confrontational session we were asked to identify and voice our reasons for becoming VISTA volunteers. When the session started slowly, the trainers asked if there were any of us that thought we were there to “save New York City” somehow.

Some of us were naïve enough, or arrogant enough, or silly enough to admit to thinking we might have such an impact. The trainers told us very definitely, this is New York City and we don’t need to be saved. Thank you very much! The trainers issued a challenge which has resonated with my wife and me ever since. We were asked to take what we learned as VISTA volunteers and bring it back to our home communities. That is where Jay Lynch, with Leo Sarkissian, holding the award. we would have the potential to make positive changes -where we live Let us help you plan. and work. We help families build a comprehensive plan for their My wife chose future and for their child’s lifetime care and happiness. to work in pub» Comprehensive Special Needs Planning lic education in » Investment Management Brockton, MA » Independent Insurance Strategies -- our home » Trustee Services community. I Planning is about more than the moneychose to work It’s about a full life. in human Talk with us today to plan for tomorrow. services, and for the past 35 Cynthia Haddad,CFP® John Nadworny,CFP® years, I have Alex Nadworny,CFP® worked at the Brockton Area 1004 Main Street Arc. Winchester, MA 01890 In 2000 we A specialty practice to Shepherd Financial Partners 781.756.1804 initiated our www.specialneedsplanning.com Family Support Planning and investment advice offered through Shepherd Financial Partners, LLC, a registered investment advisor. Securities offered through LPL Services. Part Financial, member FINRA/SIPC. Special Needs Financial Planning, Shepherd of that involved Financial Partners, and LPL Financial are separate entities. cont’d on page 17

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News from the Chapters of The Arc

Living Life to the Fullest By Kristina Tams. The United Arc

party, generously hosted by the Elks Lodge #1296 of Greenfield, Massachusetts.

Francis as Santa

“I don’t keep, I give. If we can all do that it would be great,” are the words spoken by Francis Campbell. For the second year in a row, Francis transformed himself into Santa for The United Arc’s annual holiday

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On Sunday, December 9, 2018 more than 120 individuals attended the holiday party, filling the festive room from wall to wall. Santa and his helper elves, Jessica Ainsworth and Mark Willoughby, cheerfully passed out presents as part of a gift exchange. Merry volunteers from The Order of the Elks Lodge #1296 cooked and served the holiday meal to all. Both Santa and his helpers receive services through The United Arc. The holiday season can be difficult. Families with children who have a disability face many challenges. Additionally, adults with disabilities, who may not have family to celebrate with, can experience a sense of loneliness. Therefore, it can be challenging to feel a real sense of community and abundance during the coldest part of the year. The

annual holiday party is a beautiful display of how the Elks Lodge of Greenfield and The United Arc collaborate to connect people with each other and create a welcoming community. An important part of the Elks organization is building a quiet network of good deeds to profoundly change the lives of others for the better. Volunteers who support these events are respectful, compassionate, and embody the holiday joy in everything they do. “I want everyone to know that giving is caring,” Francis continues during the monthly Advocacy Committee meeting he attends at The United Arc. Francis spent this holiday season giving back to his community -- and the annual holiday party is just one example. However, his sentiment does not fade with the end of the holiday season and the beginning of the new year. Francis exemplifies what it means to be able to live life to the fullest and positively impact the lives of others all 365 days of the year. He is Santa one day, bagging your groceries at Big Y in Greenfield another, or maybe even greeting you at the door of the Ninety-Nine Restaurant and Pub in Greenfield. Francis keeps himself busy. He is a board member, advocate, artist, caring family member and friend, volunteer, and all around fun guy. Whatever Francis does, whether dueling as an auctioneer with his father, enthusiastically bidding on continued on page 17

The Arc of Massachusetts


News from the Chapters of The Arc Jay Lynch Receives 2018 Diversity and Cultural Competence Award at The Arc of the US National Convention continued from p. 15

outreach efforts in the community to explain our Family Support services while seeking input on the kinds of services families need. We soon realized that our outreach efforts were limited because we only spoke English. The Greater Brockton community was changing. Brockton was home to a large Cape Verdean community, a growing Haitian community, a Hmong community, and many residents spoke Spanish. To reach more of the people in our service area, we realized we needed people who spoke other languages and who had community connections to join our staff. We called the Executive Director of the Cape Verdean Association who we had come to know through our local United Way affiliation. We were soon introduced to Maria DaSilva.

I am very fortunate that Maria DaSilva is with me here today. Obrigado, Maria! By using these outreach efforts and my VISTA lesson, the Brockton Area Arc has begun to reflect the diversity of the Greater Brockton community in those we serve, our staff, our membership, and our Board of Directors. In conclusion, I will borrow some words from Dr. Martin Luther King, Jr.: “If we cannot do great things— we can do small things in a great way!” That is what we at the Brockton Area Arc are trying to do each day. I am truly honored by this award, as is the Brockton Area Arc. Thank you very much!

Maria joined our staff. She showed us how to outreach to the Cape Verdean community by using her language skills in Portuguese, Cape Verdean Creole, and English. Maria taught us how to fulfill our mission of serving all the communities represented in our service area. We have since replicated our efforts by adding a staff person who leads our outreach efforts to the Haitian community.

Living Life to the Fullest continued from p. 16

auction packages (sometimes to the dismay of his father), working at one of his job sites, visiting with family and friends, participating in community events, or just being Francis, he is the epitome of The United Arc’s vision: that all people living with intellectual and developmental disabilities achieve the fullest expression of their lives. As the new year quickly approaches Francis beams with excitement for his future plans. He has already volunteered to attend the 41st Annual Legislative Reception at the Massachusetts State House in March. Francis declares, “We have to share our life stories, our voice. We have to speak for ourselves. No one can speak for us.” For Francis, the possibilities are truly endless.

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Providing services since 1954…

Adult Day Habilitation Services Family Support Program Family Autism Center ALEC First Responder Training Adult Social/Recreational Programs Harbor Counseling Center Adult Family Care Residential Programs Employment and Training Programs www.arcsouthnorfolk.org www.lifeworksma.org

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News from the Chapters of The Arc

TREE Sewing Project Important to the Fabric of Lawrence By Robin Ellington, CLASS / The Arc of Greater Lawrence

Jason pauses his work at his sewing station to share his pride of work while sewing instructor Lorraine Louie gives encouragement to Jason – yes, two Jasons in this class!

Six individuals in the TREE program at CLASS in Lawrence are learning their way around the intricacies of industrial sewing machines to create new products – and earning minimum wage while they do. CLASS’s Employment Services plan is evolving with this sewing project.

“I have been looking for an opportunity to partner with CLASS for a long time,” says Marianne Paley Nadel, owner/manager of the Everett Mills and chairwoman of the Lawrence Partnership, a coalition of leaders dedicated to working together on a shared vision of growing the Lawrence economy. “I love the idea of the CLASS sewing enterprise in the mill’s maker space, because they connect the city’s rich history of textile manufacturing, to providing jobs and educational opportunities for people that meet the revived market for locally made goods.” “Ours is a true community inclusion project and a partnership with multiple Lawrence community continued on page 19

In July 2018, TREE expanded its partnership with Social Catalysts Charitable Foundation, a nonprofit that partners with established service agencies with training and support in a collaborative weaving operation. TREE individuals have loomed colorful threads with recycled videotape to produce a resilient fabric for more than five years at CLASS. Social Catalysts uses our bolts of fabric to produce bags, purses and accessories and posts them on Etsy.com for sale. “In summer of 2018, CLASS began paying minimum wage to TREE individuals who participate in the hand-loomed fabric production process,” says Jessica Perreault, CLASS senior operations director. “We looked for a new offsite space for the project and found it at the Everett Mills in Lawrence. Through an employment grant from the Becker Family Trust, we purchased industrial sewing machines and hired a sewing instructor.” Since October, TREE individuals have been learning how to stitch simple bags in their own space, twice a week, three hours a day.

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The Arc of Massachusetts


News from the Chapters of The Arc

Charles River Center Fund Provides Life-enriching Experiences To empower and support people with developmental disabilities by offering high quality individualized opportunities that foster independence and community inclusion. Charles River Center Mission Statement The Charles River Center provides “high quality, individualized opportunities” for enriching activities and community inclusion. While it is so important that individuals be engaged in their communities, broadening their horizons, learning new skills, and enjoying new experiences, there are often financial barriers. Unfortunately, a number of the individuals in Charles River programs cannot afford to pursue a particular experience or interest. Many on a fixed income may have as little as $150 left at the end of the month to cover necessities such as clothing, toiletries, prescriptions, medical co-pays, travel, miscellaneous supplies, outings, and entertainment. As a solution to meet this need, The Phil Robey Community Fund was created. It was officially announced at the Charles River Center’s Building a Dream Gala this past April, and funded in part at the gala. The mission of the fund, named in honor of longtime board member and supporter Phil Robey, is to provide financial support to adult participants served by the Charles River Center. The priority is to enable participants to access the community to enjoy enriching experiences such as art and music

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classes, gym memberships, adaptive sports, museum memberships, and many more. Once the Phil Robey Community Fund was established, a committee formed to develop the mission, guidelines, and application process. Representing all program divisions, each member brought a unique perspective to the committee, which has helped to define the mission and goals of the fund. The committee began accepting applications for assistance this past fall and will award grants quarterly. In December, the committee awarded the first round of grants to three individuals at the Charles River Center: • Marianne, who is visually impaired, will be able to participate in an adaptive aquatics program. This opportunity will provide Marianne with an enjoyable and fulfilling activity that she loves. In the water, she is able to move without the need for physical assistance. • Billy has always wanted to try rock climbing. The grant will allow him to join a rock climbing gym and receive instruction. • Stephen will begin attending the YMCA on a weekly basis and meet

regularly with a personal trainer to carry out his fitness goals. If you are interested in donating to the fund, please visit our website. www.charlesrivercenter.org/donate/ ways-to-give/ Phil Robey joined the Charles River Center’s Board of Directors in 1994 and has been a valued part of our community ever since. As President and CEO Anne-Marie Bajwa says, “Phil’s commitment to our mission, the staff, and the individuals is unparalleled. He is the type of supporter that celebrates each of the Charles River Center’s milestones, and then starts working with us to reach the next.”

TREE Sewing Project Important to the Fabric of Lawrence continued from p. 18

members,” says Perreault, who is on the Advisory Board for the Partnership. “We were able to locate the space because of the connections forged through the Partnership. It’s another step in our Pathway to Employment program, a natural progression from day one of CLASS enrollment to eventual community employment.”

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News from the Chapters of The Arc

Center of Hope Celebrates the Holiday Season By Kayla Krause

Bunny, and Big Y all came together and donated copious amounts of food. With this program, members put together 100 baskets filled with all the Thanksgiving dinner fixings and distributed them to families with financial need. Sturbridge Day Habilitation, the newest day program at the Center of Hope, received a $300 donation from the Young at Heart Red Hatters. Every Sturbridge Day Hab’s Program Director Dan Vasbinder and year this group Program Member John Krupinski receiving the donation from donates to a local the Young at Heart Red Hatters members Rachel Lavalle and Elizabeth Brackett. organization to help during the holiday The holiday season is a time for season. This year their donation was celebration and laughter, spending given to the Sturbridge Day Hab time with the ones we care for the to be used for a Christmas party. most. It is also the time of year that Members Rachel Lavelle, whose support from the local community son John is a program member, come out, both financially and and Elizabeth Brackett visited the emotionally. program dressed with holiday cheer to drop off the donation. The Center of Hope Foundation, Inc., a non-profit agency serving adults with intellectual and developmental disabilities, helped people in the community and received support during this holiday season. To begin the season, the Center of Hope ran their annual Thanksgiving Food Drive. Program members, staff, families, Table Talk Pies, Big

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The Center’s other day programs have spent time raising money in various ways. The Center of Hope Day Hab, with assistance from other programs, conducted a Grease Musical themed talent show. Tickets, food, and beverages were sold and enjoyed while watching music and dancing to

the classic songs (Grease Lighting, Beauty School Drop Out and You’re the One That I Want). Raffle baskets were also sold to raise money. This holiday season, every program at the Center of Hope was able to have a wonderful Christmas party with food, music, gifts and fun. Program members and staff were dressed to impress with their funny costumes and sweaters. Even Santa made an appearance, walking around handing out candy canes. Christmas music playing around the entire agency put smiles on everyone’s faces. The Center of Hope was also able to put a smile on hundreds of faces during the annual Holiday Giving Tree Program. After a year of fundraising and with the help of many others, the Center gives Christmas gifts to local families with financial need. Marie Smoker, Director of Fundraising, says, “It is rewarding to see smiling faces and how grateful parents are,knowing that the Center of Hope is making a difference in helping put smiles on children’s faces.” The Center of Hope would like to thank everyone who has supported us this year in helping being able to spread holiday cheer. It is great to know that so many people support us in our mission to support individuals with disabilities, allowing us to extend our assistance from day supports to family support and advocacy in the community, so again, we thank you all.

The Arc of Massachusetts


News from the Chapters of The Arc

“The Arc Tank 2.0” Competition Grants $200K to Winning Proposals: Three Chosen from 100+ Submissions From Across the Globe to Improve the Lives of Persons with Disabilities Northeast Arc announced the winners of the second year of “The Arc Tank” competition, “The Arc Tank 2.0,” which was created to positively disrupt the conventional methods of providing services to persons with disabilities. The winners were selected by a panel of judges who heard their pitches at an event held on November 27 at the John F. Kennedy Presidential Library, a partner in the initiative. The winning proposals received awards from the Changing Lives Fund that was established through a $1 million donation from Steven P. Rosenthal, founder of West Shore, LLC. The winners are: The Arc South of Norfolk’s Autism Law Enforcement Education Coalition (ALEC) of Westwood, Mass.; Stronger Communities through Open and Organized Transportation (SCOOT) by New Star of Chicago, Illinois; Virtual Reality Functional Communication Activities & Training Seminars by the Interactive Media Institute of San Diego, California. ALEC was awarded $40,000 for its project, SCOOT was awarded $70,000 for its proposal, and the Virtual Reality Functional Communication Activities & Training Seminars was awarded $90,000 for its initiative. “The second year of the Arc Tank has shown us that there are great ideas among innovative, outside-the-box creators who have joined our quest to positively disrupt the conventional

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methods of providing services to persons with disabilities,” said Jo Ann Simons, CEO of Northeast Arc. “With Steven Rosenthal’s vision and philanthropy, and now with another (L-R) Steven P. Rosenthal -funder, David Chang-advisor, Dan three proposals to be Strick- New Star, Pat Trebe-New Star, Ralph James-judge, Kara Pierce-New Star, Quincy Miller-judge, Shirley Leung-judge, funded, we are well Matthew Kennedy-judge, Marylou Sudders-judge, Ian Milleron our way to shakInteractive Media Institute, Matthew Millett-judge, Capt. Bill ing up the status quo Cannata-retired Fire Service and Arc of South Norfolk, Sgt. Ryan Roettger-Southbridge PD and Arc of South Norfolk, Jo Ann and will be making Simons-Northeast Arc, Phil Lipof-NBC10Boston). Photo by Bill Brett change happen for a mobile app to provide ridesharing individuals with inteltransportation for persons with dislectual disabilities and autism.” abilities. The project is unique in that Each of the 2018 Arc Tank 2.0 winthe rideshare drivers will be Direct ners addresses a crucial challenge Support Professionals, allowing famicurrently facing the disability comlies to be comfortable that the driver munity. transporting their loved ones underALEC is a program that offers specialstands the special needs of his riders. ized training to first responders so Transportation is one of the most sigthey can more effectively interact nificant barriers between people with with the disability community. First I/DD and their full participation in responders can access critical training the community and SCOOT aims to from their peers who have personal make sure they can travel easily and and professional experience with safely from home to jobs and comindividuals with intellectual disabilimunity interactions – a key to solving ties. The goal is to provide additional the problems of isolation. tools to use in assessing the risk of Virtual Reality Functional Communia situation to promote safety and cation Activities & Training Seminars reduce risk of injury. Far too often, introduces innovative virtual reality the ALEC creators said, first respondtechnology to increase access to ers have difficulty understanding the services that promote social integraspecific needs and behaviors of those tion and self-advocacy in children and with intellectual disabilities who may adolescents with intellectual disabilineed their help. ties. Simply put: The virtual reality continued on page 22 With its funding, SCOOT will develop

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News from the Chapters of The Arc “The Arc Tank 2.0” Competition Grants $200K continued from p. 21

component allows parents or caregivers to better prepare an autistic child to cope with a trip through the airport, dinner at a restaurant, use of public transportation or a host of other challenging first-time experiences. With the funding, the organization will create an online resource with clinically validated VR-FCA (functional communication activities) and online videos for service providers and families so that individuals with disabilities can practice basic experience before actually doing them. Over the past two years, more than 200 proposals were submitted from across the globe and throughout the U.S. by an array of inventors, engineers, human service providers, parents, college students, and persons with disabilities. Given the high quality and creativity

of the proposals submitted as part of The Arc Tank 2.0, Northeast Arc will host another Arc Tank Competition in 2019 and will announce details early next year. “The goal of the Changing Lives Fund is to encourage and support initiatives that address challenges facing the disability community in new and creative ways,” said Rosenthal. “We need to put the kind of creative disruption and innovation that drives entrepreneurship to work helping the intellectually disabled. It’s so exciting to see these winning proposals, which really embody the mission and spirit of the Changing Lives Fund. They will have a positive impact in their communities for years to come.” Other proposals that did not make it to the final round but have worthy ideas went into “The Holding Tank,”

where they will have the opportunity to be reviewed by other funders. The panel of judges was composed of Matthew Kennedy (Founder, Kennedy Merchant Partners); Ralph James (Entrepreneur, higher education administrator, philanthropist); Shirley Leung (Interim Editorial Page Editor, columnist, Boston Globe); Quincy Miller (President, Eastern Bank); Matthew Millett (Security Officer II, Department of Youth Services, Commonwealth of Massachusetts); and Marylou Sudders (Secretary, Health & Human Services, Commonwealth of Massachusetts. Judges received support from David Chang, an entrepreneur and active angel investor, and from Margaret Ake, moderator of Harvard Business Publishing. Master of Ceremonies for the event was Phil Lipof, NBC10 Boston news anchor.

Day Hab Renovations Begin at The Arc of the South Shore At The Arc of the South Shore, we are proud to offer safe, engaging opportunities for individuals with developmental and intellectual disabilities to improve their health, safety, and independence. We provide a space for them to access physical and occupational therapy, health care, life skills training including self-care and cooking classes, opportunities to build friendships and a sense of community, and of course, have fun.

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Although we remain ever committed to offering the highest quality programming, it is time for us to turn our attention to the building itself. After nearly 80 years, our Day Habilitation facility is starting to show its age. The heating and cooling systems are no longer working efficiently. The electrical system is in desperate need of repair, and we need to install a sprinkler system. Some of our hallways are very narrow, making it very difficult

for our participants who use wheelchairs to navigate. The list goes on and on. We are undertaking a $750,000 renovation of our Day Habilitation facility at 371 River Street to improve its safety, quality, size and functionality. For us, this project is about more than bricks, it is about building a foundation for the future. This new, modern, and multi-purpose facility will expand continued on page 23

The Arc of Massachusetts


News from the Chapters of The Arc

Berkshire County Arc Opens Brain Injury Day Program, Nu-Opps in Lee Berkshire County Arc announces the grand opening of Nu-Opps, a brain injury day program providing new opportunities for cognitive wellness. Located in Lee, MA, NuOpps offers a broad range of therapeutic and clinical services. The person-centered program has been designed to meet the specific and unique needs of people with brain injury, and includes both formal and informal work on cognitive and memory skills, fitness, and health. Nu-Opps allows opportunities to engage in artistic and creative expression through in-house programming and partnerships with various community organizations, including Community Access to the Arts and the Williamstown Theatre Festival. In addition to working on their own individualized programs,

attendees can choose from a wide variety of social and leisure activities, and take part in individual or group volunteer projects. An open house was held on Thursday, January 24, from 10 a.m. to noon at 133 Quarry Hill Road in Lee, MA. During the open house, the program was open to the public, and visitors were able to meet participants and staff, hear directly about their experiences, and see this state-of-the-art facility first-hand. “There is an increasing need for services for people with brain injury throughout Berkshire County, and BCArc is thrilled to be able to offer this wonderful program in our community to help meet that need. We hope that the community,

Kathleen R. at the BCArc Nu-Opps program in Lee, MA displaying her mask from the “Unmasking Brain Injury” art exhibit.

individuals, and caregivers will take the time to come and visit this innovative program”, said Kenneth W. Singer, President and CEO of Berkshire County Arc.

Day Habilitation Renovations Begin continued from p. 22

program space by 3,000 sq. ft. and include: • Computer lab • Sensory room • Fitness room • Modernized kitchen and lunch rooms • Senior room • Oversized classrooms for activities of daily living, development skills training, and therapies • Multi-purpose areas that can be

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371 River Street

used collaboratively by the entire Arc Community We are excited to create our new, state-of-the art space that will

support our mission of empowering families and individuals to reach their fullest potential.

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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. Journey to Success List of Advertisers The Arc of South Norfolk Berkshire County Arc FletcherTilton PC Rewarding Work/TILL Inc. Riverbrook Special Needs Financial Planning Specialized Housing SUPPORTbrokers The Guild School

Valerie Lessa proudly displays her graduation certificate!

Valerie Lessa, a Minute Man Arc client with Cornelia DeLange Syndrome, has achieved much in her life such as holding a long-term job and living independently in Concord. On September 5th, she achieved another milestone when she graduated from an eight-week Self-Advocacy Leadership Series at

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Bridgewater State University where she studied advocacy, team building and communications. Although the course work was challenging, the more remarkable aspect of Val’s participation was her journey by three trains every Wednesday just to get to the college campus from her Concord

Our advertisers help support the mission of The Arc of Massachusetts. home. After three practice sessions with her travel trainer, Val traveled solo to her class for eight weeks in a row, all without any problems. “I never thought I could do something like this, especially the train travel,” Val said. Congratulations to Valerie on her leadership journey. We knew you could do it!

The Arc of Massachusetts

Profile for The Arc of Massachusetts

Advocate Winter 2019  

Advocate Winter 2019