advocate - thearcofmass.org · dds commissioner elin howe representative brian dempsey and senator...

Achieve with us.

continued on page 8

Inside this issue...Article Page

Government Affairs .....................4

Operation House Call ...............10

The Friendship Corner ...............16

SUPPORTBrokers .......................21

News from the Chapters ...........23

HealthMeet ..............................28

Plans are underway for the fourth annual All Aboard The Arc!, continued on page 14

AdvocateSpring 2014

Get ready for the 4th annual All Aboard The Arc!

In November, the Department of Developmental Disabilities released the “Blueprint for Success,” with the subtitle “Employing Individuals with Intellectual Disabilities in Massachusetts.” The Arc of Mas-sachusetts supports the Blueprint and partnered on its development with ADDP (Association of Devel-opmental Disabilities Providers).

The Blueprint reflects continuing “cultural-societal change.” This point was effectively shared by Bob MacDonald, a provider executive from western Massachusetts, who helped explain the Blueprint to families at a forum in Springfield.

The continuing “change” was crystallized by the Americans with Disabilities Act (ADA) and the

Supreme Court’s Olmstead decision. It is further reflected in Governor Patrick’s and EOHHS Secretary Bigby’s “Community First” policy, eloquently framed in 2008. The federal court further reinforced the decision when Governor Patrick decided to appeal Judge Tauro’s decision on maintaining the Fernald state school.

The blueprint for success: employment and community inclusion

By Leo Sarkissian

scheduled for Wednesday, May 7, 2014. This year’s awareness cam-paign will be the largest ever, with more chapters of The Arc from all parts of the Commonwealth participating.

All Aboard The Arc! has moved the central event to an exciting new and very visible location: The Boston Common! The Rally will begin at 11 a.m. with hundreds of people gathering on the lawn, with our beautiful State House as a backdrop. There will be an inspi-rational program including Justin

Focusing public attention on the abilities and needs of people with intellectual and developmental disabilities

The Arc of Massachusetts2

Published by

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

OFFICERSFrank Sally President

Daniel Sullivan Vice President

Tracy Atkinson Secretary

Deborah Norton Treasurer

Christopher Andry Immediate Past President

DIRECTORSJustin Bernard Susan LodemoreElizabeth Bostic Seth P. LopesJim Buss Sean MorrisseyKatherine Craven Renald Raphael Tim Evans Kathy RicciardiAdam Hill Peter H. Tallas Robert A. Hill Martha Ziegler Judi Kotanchik Joe Andrade, Director EmeritusFlorence Finkel, Director Emerita

The Arc of Massachusetts StaffLeo V. Sarkissian Executive Director

Barbara L’Italien Director of Government Affairs

Brenda Asis Director of Development

Christopher Jenkins Financial Officer


The story of The Arc of Greater Plymouth begins at the kitchen table of Don Guilfoyle and his wife Bette in 1966. They were part of a group of parents wanting a better, richer life for their children with developmental disabilities. From this group, The Arc of Greater Plymouth was formed.

Until his death, on July 23, 2013, Don was a member of The Arc’s Board of Directors. He was a past president and served as treasurer for a span of over 50 years. At The Arc of Greater Plymouth’s June 2013 Recognition Award Event, Don was given Emeritus Status. Don and Bette, along with their son Jack were examples of lifelong commitment to growth, continued learning, and giving back. Largely through their dedication and hard work over the years, The Arc of Greater Plymouth has become the multi-service agency that exists today. Bette, a former English teacher at South Shore Vocational Technical High School in Hanover, and their exceptional son Jack, both passed away in 2010. Their lives are shining examples of our agency mission in action.

In addition to his work as an officer and director of The Arc, Don and Bette could be found at most Arc events, be it wrapping holiday gifts at the Kings-ton Mall for fundraising purposes, seeking donations for the annual auction, or dancing at the annual dinner. Don and Bette’s four surviving children remem-ber their father’s dedication and their own participation in the organization. Some fond memories include a 5-K race sponsored by the Arc and the Pilgrim Food Cooperative operated by The Arc for many years as a job training facility.

In 2011, The Arc of Greater Plymouth established the Jack Guilfoyle Memorial Scholarship for Reading Excellence as a tribute to their continuing commit-ment to lifelong learning. The scholarships are awarded yearly to Hanover Public School students who have shown outstanding commitment to improving reading skills.

Wayne Owen, past president and current board member of The Arc of Greater Plymouth remembers: “Don’s financial experience and unwavering commit-ment assisted The Arc enormously through the challenging periods as well as the better times. Don remains, without challenge, one of the kindest and most loyal individuals I have ever met.” Jim Wallace, long time board of member, adds “Don was a key member of the organization for over 52 years. He earned the respect of everyone associated with The Arc based on his professionalism, integrity, persistence, dedication and determination. The Arc has truly lost a remarkable person and friend.”

In gratitude and celebration of the irreplaceable contributions Don, Bette and Jack have made to our organization, The Arc of Greater Plymouth will dedicate our Conference/Board of Directors Room at our new site, 52 Armstrong Road, to the Guilfoyle family. It will be named the Donald J. Guilfoyle Conference Room.

In Memoriam: Donald Guilfoyle, The Arc of Greater Plymouth founding father

Bette and Don Guilfoyle

Achieve with us. 3Achieve with us. 3

In March 2014 we read: Harrisburg PA, “More than 13,000 families are in line for benefits to help care for someone with an intellectual dis-ability.” One parent reports about her limited employment options; She is forced to take a low-paying job “that allows her to adjust her schedule around her son’s needs.”

We read again – this time about “Hall v. Florida,” a death penalty case on which we have reported that sits at the Supreme Court. Peter Berns, CEO of The Arc US, states, “Florida is clearly violating the Supreme Court’s Atkins v. Virginia ruling and the Court must reaffirm its commitment to the rights of people with intellectual disabilities in our criminal justice system. Freddie Lee Hall has an intellectual disability, and Florida’s effort to [flout] the professional standards on IQ testing to end someone’s life needs to be stopped by the highest court in our country. It is immoral and unjust.”

And now we read about the Mary-land Commission for Effective Community Inclusion of Individuals with Intellectual and Developmen-tal Disabilities, which met with the public recently at The Arc of Freder-ick County, which provides services for people with disabilities. It was the fourth and final stop of the com-mission’s tour.

The commission was formed after the death of Ethan Saylor, who died last January while in the custody of Frederick County Sheriff’s Office deputies after refusing to leave the Regal Cinemas Westview Stadium 16 movie theater. Saylor had Down

Much left to do: help us help othersBy Leo Sarkissian

syndrome. Phyllis Liddell, an Arc volunteer, shared stories that dem-onstrated the importance of consid-ering people with disabilities when setting policy and procedures, and using a common-sense approach.

These news stories and others show we live in fast-paced times where various issues and needs of children and adults with disabilities can arise. The Arc and The Arc of Massachusetts in particular have the knowledge, history and network to respond to issues and needs in a substantial way. But our funding is reliant primarily on private financial contributions. It still requires an or-ganization like The Arc to pass those laws, obtain adequate funding and update laws, regulations and poli-cies as needed. Don’t take The Arc for granted. We need your support!

The Arc leads the way in advocacy for all people with intellectual and developmental disabilities. In Massachusetts we have a history of accomplishments that have touched the lives of tens of thousands of children and adults:

The Arc of Massachusetts was one of the three lead organizations which brought about Chapter 766, Special Education Law

The Arc of Massachusetts led the efforts to establish Turning 22 (Chapter 688); in the years after, it worked with officials to establish a minimum formula for funding on an annual basis

The Arc in its role in the Consent Decrees (legal suit on state school or institution conditions) ensured

that a “Community Plan” was in-cluded in the settlement

The Arc played a leadership role in other legal actions, partnering with attorneys or law centers – all focused on wait lists or ensuring the right to live in the community with adequate support services

Boulet – the Wait List settlement

Rolland – Nursing home settlement

Mahoney v. Weld – to offset legisla-tive attempts to delay institutional closure

In the next eighteen months we hope to get louder so more people will come to know us and the value of our work. But how about you? Have you supported us lately? Do you receive supports? Do you think about the value of those supports every year? What it takes in lean years to minimize negative impact and in good years to increase access to services?

With your support we can do more of the same – bring about additional accomplishments that translate into good outcomes for individuals and families. If we grow the support we can have more regional outreach to families who are struggling to find resources and empower them. We can ensure The Arc is here tomor-row and in the future. The supports we advocate for – whether they cost $2,000 per year, $15,000 per year or much more (residential) – require continual nurturing and advocating.

So does The Arc. Help us be here for you, your friends and others. Help us now by going to Donate Now at www.arcmass.org


continued on page 5

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Huge turnout at State House for annual Legislative Reception

Government Affairs

On March 5, more than 400 peo-ple joined The Arc Massachusetts and the Massachusetts Develop-mental Disabilities Council at the 36th Annual Legislative Reception. Evelyn Hausslein provided the key-note talk for the event which was titled, “Making Our Future Hap-pen: Feeling Safe, Included and Free.” In the process of sharing two stories about her son and his growth, she captured the theme while highlighting positive poli-cies that could advance the lives of persons with disabilities.

Evelyn, Bob and Tom Hausslein

Leo Sarkissian, Representative Brian Dempsey and Barbara L’Italien

Julie Fitzpatrick, Senate President Therese Murray, Senator Jennifer Flanagan, and artist Anastasia O’Melveny

Achieve with us. 5

Huge turnout at State House for annual Legislative Reception contd from p. 4

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Government Affairs

Assistant Secretary Rosalie Edes, Mass. Rehab Commissioner Charles Carr and DDS Commissioner Elin Howe

Representative Brian Dempsey and Senator Jen Flanagan were recog-nized with legislators of the year awards. Speaker Robert DeLeo and Senate President Therese Murray enhanced the event by leading the presentation to the award-ees – works of art by Anastasia O’Melveny and Jamie Maxfield.

Brian Leary served again as emcee, keeping the program on schedule. EOHHS Assistant Secretary of Dis-ability Policy and Programs’ Rosalie Edes shared greetings on behalf of Governor Patrick. Frank Sally, President of The Arc, provided welcoming remarks while Julie Fitzpatrick, Chair of the MDDC, ended the program with the “Call to Action.” Attendees then had the opportunity to visit their own state senators and representatives to encourage them to support budget and legislative priorities that would make a difference in the lives of people with intellec-tual and developmental disabilities.

A special thanks to the wonderful attendees who not only added spirit and energy to the occasion but filled the halls of the state house after the event. Your participation is crucial to these events—Thank you!

Speaker Robert DeLeo


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As this issue of Advocate went to press, The Arc of Massachusetts’ began its 60th year of policy advo-cacy on behalf of individuals with intellectual and developmental dis-abilities (I/DD). Whether establish-ing special education or building the foundation of the community system by ensuring that the “Com-munity Plan” was part of the Mas-sachusetts Consent Decrees, The Arc has been the leader in ensuring supports and services for those with I/DD and families.

This year in partnership with ADDP, Mass Families Organizing for Change and others, The Arc budget request touches children, adults, family support, employ-

ment and ensuring the adequate funding of residential services. Hopefully you already have been on our website: go to State House Policy to find the budget fact sheet and testimony; and to our Action Center to send an email (on the home page click the Take Action bar). If not, you’re late but not too late so please help us help you and/or a friend or family. Emails are a basic first step if you’re learn-ing about advocacy or are “very busy,” but always remember to personalize them with a sentence. If everyone sent an email who had a disability or was connected to a person with I/DD we would have tens of thousands of them –what

a difference it would make. The Arc of Massachusetts’ website is www.arcmass.org

Most of our requests focus on the Department of Developmental Services (DDS) and we ask that the Leg-islature hold on parts of the Governor’s request while asking for ad-ditional mon-ies for several

line items. Please download our fact sheet (or we will mail it to you upon request) but in the meantime here is quick list of line items for which we ask for new monies:

• Autism Division -- $3 million more, some for autism support center staffing

• DESE-DDS - $2 million more

• Family support/respite – hold Governor’s amount

• Employment - $6 million more

• Turning 22 - $8.7 million more (total $15.2 M)

• Line items not here – hold fund-ing as in Governor’s budget

Beyond the budget there are several bills and one national development which we report on in this issue. In this article we focus on the bill to expand eligibility to those with developmental disabili-ties and the Real Lives bill.

The expanded eligibility bill is now “An Act to Permit the DDS to Pro-vide Services to Persons with De-velopmental Disabilities” and it has a new number, H. 3715. It is now waiting in the House Health Care Finance Committee and hopefully will proceed to the full House.

The “Real Lives” bill faces a less clear path. The Senate Chair of Children, Families and Persons with Disabilities, Michael Barrett, chose to draft a new bill. We ap-preciate the speed at which the bill was drafted but it has some

continued on page 7

Achieve with us. 7

Government Affairs

Governmental affairs -- affecting your life contd from p. 6

The Arc of South Norfolk’s Family Autism Center

was created in 1996 by a dedicated group of parents to meet the needs of people diagnosed with

Autism Spectrum Disorders and their families.

Today, Family Autism Center serves over 600 families throughout Norfolk County by offering the following programs:

• Outreach Services/Information & Referrals • Advocacy & Assistance • Family Support • Resource Library • Education and Training For Families and Educators • The ALEC Program (Autism & Law Enforcement

Education Coalition)- Specialized training for First Responders

For more information and to become involved with Family Autism Center, please contact The Arc of South Norfolk at

781-762-4001 www.arcsouthnorfolk.org Family Autism Center is one of the 7 DDS-funded autism

support centers in Massachusetts

significant differences from the initial bill.

We will work for passage of the Real Lives bill and if a compromise can be worked out, that would be great. Self-determination is already happening in Massachusetts and we want to ensure we have a bill that encourages its reasonable growth instead of continuing a system which is overwhelmingly “slot” based.

In positive Social Security news during the week of March 3, Sena-tor Sherrod Brown (D-OH) and Senator Elizabeth Warren (D-MA) introduced the Supplemental

Security Income (SSI) Restoration Act of 2014 (S. 2089; “SSI Resto-ration Act”). This addresses the stagnant earned income and asset limits which have discouraged employment for years! Last year, Representative Raul Grijalva (D-AZ) introduced similar legislation in the House (H.R. 1601; SSI Restoration Act of 2013). S. 2089 proposes to update and index to inflation the SSI earned income and general

income disregards, update and in-dex to inflation the SSI asset limits (from the current levels of $2,000 for an individual and $3,000 for a couple to $10,000 for an individu-al and $15,000 for a couple), and make other improvements to the SSI program that simplify admin-istration and support beneficiaries. The Arc strongly supports this im-portant legislation to update and strengthen SSI.

Berkshire County Arc (BCArc) is excited to announce that the accessible parking lot spaces in front of the Main Building have been updated to reflect a new image! The new icon displays a person with a disability in forward motion. The introduction and implementation of this new icon, which is a significant improvement over the previous image, which displayed an individual in a static position, would not have been possible without the efforts of advocacy of BCArc’s Brain Injury Department. BCArc has become one of the pioneers

in advocating for use of an updated version of the icon, which truly reflects people with abilities, not disabilities. The accessible parking spaces at all BCArc sites are in the process of being replaced to include the updated icon.

Berkshire County Arc introduces new accessibility icon

Chris Moss gives his “two thumbs up” seal of approval on the new logo. Pictured with him is BCArc’s Executive Director Kenneth W. Singer and Kara Rogers, the Brain Injury Site Manager at North Main Street, Lanesboro.


Government Affairs

continued on page 9

The present plan focuses on ap-proximately 2,600 people who are in facility based employment services (“workshops”). Of those 1,251 attend workshops full-time. Typically individuals in these set-tings work on piecework such as packaging, mailings or putting together small parts of a prod-uct. Much of the manufacturing firms in the United States which helped supply this work have moved to other countries. Con-sequently there is less work and more “down-time” which, if not effectively addressed, results in drawing or nap-time. The funding for workshops is limited, with staff ratios ranging from 1:10 to 1:16. This doesn’t leave much room for individualization.

Recently, the Human Services Research Institute reported that over 50% of individuals with intel-lectual/developmental disabilities surveyed nationally would like to have a paid job. Over 70% of the same survey group didn’t even have the goal of a paid job in their Individual Support Plan. It may take time to assist people to obtain jobs, but it’s not going to happen if the goal doesn’t appear in one’s support plan.

There are two other aspects to the workshops that are impor-tant to understand in relation to the “cultural change” and legal

realities since the ADA. Workshops can obtain special Department of Labor certifications to pay people sub-minimum or commensurate wage. Time studies are performed on each job introduced in the workshop and attendees get paid based on their work pace. Many (most?) workshop attendees earn less than $20 per week due to this factor and the lack of sufficient piecework.

A second issue is the fact that the facilities or workshops are segre-gated. Perpetuating segregated work settings is contrary to the ADA and Community First policy. We accepted this reality in recent years due to funding limitations. But with the advent of the Olm-stead decision, people with dis-abilities recognize that segregated settings shouldn’t be the norm and advocacy organizations like ours agree that it’s time to grow inclusion in the community.

Although DDS asked providers to develop 5-year workshop “conver-sion” or closure plans in 2011, providers may have felt that these plans were not realistic since new funding was needed in most cases to implement them. Over 10 years ago, the Berkshire County Arc chose to close its sheltered workshops using a number of strategies. Others have started including, Work Inc. based in Boston.

Of course there will be “grieving” over the old way of doing things. But there is good news in the Blue-print for those who are grieving. You will have individualized support services that you don’t have today.

The Blueprint places the emphasis on people’s strengths. It asks us to take a new look at those with whom we work and to develop a career plan for each person that emphasizes his/her strengths, learning needs and interests. The plan includes community-based day supports (CBDS) which is one way workshop attendees will receive individualized assistance. These supports or CBDS reflect different relevant categories. Some are for job or career en-hancement such as travel training, community safety skills, working on resumes, small social groups to help with expressing needs and interests, trips to cafes to increase social skills during non-work time (lunch, breaks, etc.). Other activi-ties may relate to both work and community inclusion—internships at a pet shelter, council on aging, high school, store, office, coffee shop, etc. Other CBDS or supports may have nothing to do with work but relate to inclusion and growth – these include exercise classes locally, trips to museums or other community sites, science groups and sign language.


contd from p. 1

Achieve with us. 9

Government Affairs

The Blueprint covers key areas for systematically addressing this sig-nificant goal! It includes outreach to stakeholders, training for staff, training for agencies to make the transition and a method for con-tinual improvement. For example, DDS has offered providers fund-ing to hire consultants to help each look at their organization not only in terms of staff training (job coaches, curriculum develop-ment, etc.) but also in regard to changing business models. Each provider is different – some may have 100 or more in their work-shops while others may have only 25 to 40 people. The change to their organizations will vary based on that reality.

The plan also includes “Employ-ment Collaboratives” where agen-cies will partner to find jobs for those whom they serve. Staff at the collaborative will outreach to business on behalf of all agencies. One staff member will approach a

big chain instead of five different staff members from five agen-cies approaching it. This type of combined marketing has worked in two parts of the state. Funding also has been set aside for benefits training and individual consulta-tion. Individuals will be able to address their questions about how their income will affect social security, MassHealth and other benefits.

The Blueprint is a 4-year, $26.7 Million dollar plan. It sets a foundation for future young people enter-ing the adult employment system funded by DDS. The first year fund-ing needed is $11.1 Million. Your advocacy involvement can make a


contd from p. 8

difference in obtaining the full funding needed.

The “Blueprint for Success” allows Massachusetts to be proactive and direct its own destiny for employ-ment of persons with intellectual and developmental disabilities. By working proactively and respon-sibly, we can focus on what are valued goals for all of us: employ-ment and community inclusion.

See related article on “The Friendship Corner” page.


Operation House Call

One clear reason for the success of Operation House Call – the innova-tive training program which each year teaches more than 300 medi-cal and graduate-level allied health students essential skills to enhance their health care of persons with intellectual/developmental dis-abilities – is the dedication of the parent-instructors who bring their expertise and passion to their classrooms.

The program, which began more than 20 years ago at Boston Uni-versity School of Medicine (BUSM), aims to introduce third-year medical and allied health students to individuals with special needs and their families. Its underlying premise is that families can be the best teachers when they share their experiences with students. In addition to BUSM, Operation House Call is now offered at Tufts University School of Medicine and Simmons School of Nursing and

Meet Operation House Call’s Parent-Instructors, Part 2

Editor’s Note: Part 1 of this article appeared in the Winter 2014 issue of Advocate.

Health Sciences. At each of the three educational institutions, the program is anchored by a parent-instructor and a self-advocate. Advocate spoke recently with each of them: Melanie McLaugh-lin (Tufts University School of Medicine); Maura Buckley (Boston University School of Medicine) and Ann Bersani (Simmons School of Nursing and Health Sciences). Melanie was featured in Part 1 of this article. This issue highlights Maura Buckley and Ann Bersani.

Maura Buckley and her family have been involved with OHC since they became a host fam-ily about 5 years ago. Two of her three children – a 12-year-old son and a 9-year-old son – have both autism and mitochondrial disease, presenting significant communi-cation and behavioral issues. “I think it’s important for the medical students to have the experience of dealing with kids who have a co-

morbid diagnosis,” she says, “because it allows them to see beyond the behaviors and to recognize the impor-tance of a collaborative approach to patient care.” For example, it’s often eye-opening for the students to confront the fact that what may seem bizarre

behaviors may be related to a specific medical issue such as pain. Maura herself was a LEND Fellow, and concentrated her capstone research project on “autism plus” – autism plus a medical condition. (The LEND program is a graduate-level interdisciplinary training program that prepares students, fellows, and other health profes-sionals to assume leadership roles in their respective fields, and to ensure exemplary health care and related services for children with autism and other developmental disabilities and their families.)

The home visits involved the entire family, and Maura feels her 15-year-old daughter has benefited from them, since the visiting students would often direct questions to her and valued her observations and her perspective as a sibling. Because the OHC program is mandatory for all third-year students at Boston University School of Medicine – which means a large number of students must be accommodated each year – the Buckleys still “pinch-hit” when needed for home visits.

About two and a half years ago, Maura’s primary role switched to that of parent-instructor. Maura teaches nearly 200 students a year in 8 different sessions, with 20-24 students per session. The students take the class prior to making their

Simmons Masters Candidates continued on page 12

Achieve with us. 11

SUPPORTINGTHE ARCAND ALLYOU DO.

It’s what we do.Over a decade ago, Commonwealth Care Alliance pioneered a model of care to help people with disabilities live healthier, more independent lives. Today, we support the vital work of The Arc of Massachusetts, and are proud to be part of the new One Care program as an approved plan. Healthy is harder for some. That’s why we’re here.

If you or someone you know receives MassHealth and Medicare, call 866-610-2273

or visit commonwealthcarealliance.org.

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home visit, and they agree that the class is an important component in their preparation, giving them a better idea of what to expect. As part of the class, Maura screens a video that shows her family inter-acting with the team of specialists, both medical and behavioral, that is so essential to the wellbeing of her sons. She works closely with a co-teacher – a self-advocate who comes in toward the end of

Meet Operation House Call’s Parent-Instructors contd from p. 10

the class. By then, she says, the students are really ready to en-gage, ask questions, and discuss issues. She praises the courage of the co-teachers she has worked with, commending them for their openness and honesty. Operation House Call provides an abundance of additional resources for the students to expand their under-standing. Following the class, for example, the students participate

in an ongoing chat room, describing their home visits and sharing their experiences.

Maura has been de-lighted to see OHC expand beyond its

original BUSM setting, and hopes it will continue to do so. She notes that the recent report of the Mas-sachusetts Autism Commission pointed to Operation House Call as an example of a valuable program that works to increase the number of health care “providers who are knowledgeable about autism and other developmental disabilities” and thus play a role in improving the delivery of health care services for these underserved populations.

Ann Bersani became involved with Operation House Call through her connection with Sarah Cullen, a staff member at the Massachusetts Down Syndrome Congress who had been a host home volunteer. Ann says she is always looking for opportunities to educate people about developmental disabili-ties, so she eagerly accepted the

Co-teacher Matthew Cullen with a Boston University School of Medicine class.

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Meet Operation House Call’s Parent-Instructors contd from p. 12

invitation to serve as a host family for OHC. Over the years she and her family have hosted 10 or 12 medical students. More recently, when Simmons College decided to launch a pilot program through its School of Nursing and Health Sci-ences, a graduate-level program, Ann became its parent-instructor. Her son, Brendan, who is now 20 years old, sometimes works as a co-teacher.

The Simmons OHC program differs from the ones at Boston Univer-sity and Tufts University in several ways. Unlike the other two, which are designed for medical students and have a pediatric focus, the Simmons program is a Masters program for nurses, nutritionists and physical therapists and focuses on adults with disabilities. As a

result, the Simmons students are able to get a picture of the lives of people with disabilities when they live outside their family home. The students are often older than those in the medical school OHC courses and may have had more experience with people with dis-abilities. The Simmons curriculum also includes a new component on “Inter-professional Competency,” designed by Simmons faculty.

Because the Simmons program is interdisciplinary, the students learn a great deal from one another. Each has to write a blog of at least 400 words about their home visit experience. Since Simmons is the newest of the three OHC programs and varies in the ways described above, it has been interesting to get feedback from the students.

The feedback has been extremely positive, and some have indicated that the course has had a defi-nite impact on their careers. One student, for example, has taken a job as a nutritionist with the Down Syndrome Clinic at Massachusetts General Hospital. Ann shared this news with a subsequent OHC class as well as with Simmons faculty members with whom she collabo-rates, and they were excited to hear it.

Ann and her family still participate in OHC’s home visits from students at BUSM and Tufts, a source of great satisfaction. She was espe-cially pleased when one student commented that she expected to see anger and resentment during her home visit but instead, she said, “You’re just a normal happy family.”

OHC Dollar Matching Gift: Any donation earmarked to OHC will be matched dollar for dollar to a maximum of $5,000 in matching funds for this academic year. This means a contribution of $50 will equal $100 for OHC. With a maxi-mum of $5,000 in matching funds, we can reach $10,000 in additional support for OHC if enough of our readers participate. This total can be reached easily given our reader base of more than 8,000. If 100 people give an average of $50, we would reach our goal through this program (200 people at $25 and so on!)

Matching Gift to Recognize Host Families: This matching gift recognizes the valuable contributions which host families make to the program when they allow medical and other health graduate students into their homes. In 1994, John and Susanna opened their home to OHC. They appreciate the ef-fort families make when they take the time to educate. Without our volunteer families, Operation House Call would not exist. The participation of host families will be recognized with a gift of $25 per home visit up to a maxi-mum of $5,000 during this academic year. With more than 300 students every year, the program requires many

home visits! Again: this grant program will also run for three aca-demic years beginning June 2013.

Please consider participating. Your gift will be matched. You can give online (please make sure you note OHC) or call us and request an envelope (781-891-6270, extension 100). And you can contact us if you are considering becoming a host family, too. Feel free to email us for either reason at [email protected] and put OHC in the subject line. Learn more about OHC at arcmass.org/ProgramsatTheArc/ OHC-HealthCareProject


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to Human Service Agencies

ETS offers data processing systems and services solely for human service agencies and non-profit programs.

One Care program roll out has begun! We are available to bill Fallon, CCA and Network Health.

Hines and Ash & Bloom perform-ing their music live onstage. We are delighted that Comcast Business Class will once again be our primary statewide partner for this event.

Rally for Inclusion. We are ALL meant to shine.

All Aboard The Arc! is a statewide pledge event in which anyone can participate – individuals, fami-lies, community members, local leaders, supporters of The Arc, students, and employee groups. Please join with others from all across Massachusetts in focusing public attention on the abilities and needs of people with intellec-tual and developmental disabilities

and their families. Come to Boston Common on May 7th and join the fun!

The 2013 All Aboard The Arc! event raised nearly $250,000 The goal for the 2014 event is $500,000. All Aboard the Arc! is not only a great fundraiser and awareness builder, but an opportu-nity for corporate partners to gain extensive community visibility, as well as network with new potential partners, enhance team spirit, and develop employee morale – all while assisting people with intellec-tual and developmental disabilities and their families across the Commonwealth.

Don’t miss this inspirational event

supporting human rights and the elimination of discrimination of all people with intellectual and developmental disabilities and their families!

If you would like to take part in the 2014 All Aboard The Arc! event – as a participant, sponsor or corporate partner – contact The Arc of Massachusetts (781-891-6270) or visit our website: www.allaboardthearc.org

Please note: All participants who raise $300 or more for All Aboard are automatically entered into a ran-dom drawing to win one of 2 iPads. For every additional $300 raised, an additional entry will be made on the participant’s behalf.

Get ready for the 4th annual All Aboard The Arc!contd from p. 1

Save These DatesBe sure to mark your calendar for these

important events. Visit our website (www.arcmass.org) for details

May 7 – All Aboard The Arc! Boston Common 11:00 a.m. Rally and Entertainment

September 20 – “Transition from School to Adult Life”

All-day conference for families at Hogan Campus Center, College of the Holy Cross, Worcester

October 23 – Dinner and Auction, Westin Hotel, Waltham

Achieve with us. 15


Friendship Corner

Michael Briggs, 16-year-old with Down’s syndrome, inspires while playing the sports he

loves for Andover HighBy David Willis, Eagle-Tribune

Michael Briggs races though the pregame warm-ups lines effort-lessly. Dressed in his blue and gold Andover High warm-up jersey and shorts, he fires up a shot, then hustles to scoop up a rebound from a teammate’s miss, receiving high-5s along the way.

As the game progresses, Briggs cheers on his teammates from his seat at the end of the bench, next to JV coach Alan Hibino, rising during timeouts to pat a teammate on the back and offer a word of encouragement.

Finally, with just under a minute to play, Briggs removes his warm-up to show his white No. 45 jersey. He positions himself in front of the scoring table to check into the junior varsity game between Ando-ver and Methuen. Not long after, Briggs receives a pass and takes his only shot of the game. It rims out, but that cannot erase the smile on

his face as he races back on defense. “This close,” he says, holding two fingers close together with a laugh as he walks off the court, a teammate’s arm over

each shoulder.

For Briggs, who was born with Down syndrome 16 years ago, basketball is more than just a sport. “His knowledge of basketball is amazing,” said Michael’s father, David Briggs. “If he isn’t playing basketball or at a basketball game, he is probably watching a game on television or playing basketball on X-Box. He truly loves basketball.”

This winter Michael, a sophomore at Andover High, is a member of the Golden Warriors JV basket-ball team, living out his dream of playing the sport he loves for his high school, a team that has truly embraced him.

“I love playing with my team and I love basketball,” Michael said. “They (the team) like me a lot.” Why wouldn’t they? Briggs’ smile is heart-warming, his laugh and energy infectious. His joy is natural, without a hint of insincerity.

“Michael is amazing,” said Hibino. “He brings such a positive energy and enthusiasm to this team. He has a love for this game and a love for this team that is really inspiring. He is here every day, working with the kids and interacting with them. “He loves the team and the team loves him. He perfectly represents what it means to wear an Andover basketball uniform.”

Michael Briggs was born to fall in love with basketball. The same year that mother Kim gave birth to Michael, his father, a lifelong bas-ketball fan, first purchased season tickets for the family to the Boston Celtics.

“The first year I bought them was the year Rick Pitino was hired as head coach,” said David, who played basketball at Lexington High and whose Boston Cafe & Ca-tering worked with the Celtics for many years. “That didn’t work out, but we have had them ever since.”

“By the time Michael was 3 or 4 years-old, we started bringing him to Celtics games and he has been going ever since. He goes to every weekend game and we sneak him into a few weeknight games. He doesn’t miss a beat during the game. He knows all the players on every team and he does every cheer.”

Michael Briggs on the court

continued on page 17

Achieve with us. 17

Friendship Corner

The Massachusetts Department of Developmental Services is working with their day and employment program providers to offer the people they serve more full time and part time employment and day supports in the community. Some benefits that can come from this initiative are better wages, a job or activity more suited to a per-son’s interests or skills, or working at a place closer to home.

A good pay check and meaningful work are important. But this initia-

Working towards friendshipsBy Mary Ann Brennen and Jim Ross, The Real Friends Project

“Coming together is a beginning; keeping together is progress;working together is success.” Henry Ford

tive is also an extraordinary op-portunity for parents, individuals, job coaches and others to seriously think about the social aspects of work and day supports. Planning needs to include supporting people to maintain current friendships and develop new relationships in the workplace and community. Com-munity is a place where there is interaction, fellowship and com-mon interest. These are the charac-teristics that lay the foundation for friendships and relationships.

As this initiative unfolds we encour-age each individual/family to be actively involved in the person-centered career plan with respect to both employment and social goals. This is an exciting time for people with intellectual disabilities who will now have new and better opportunities to become part of the workforce or to have a broader range of day options. It is also fer-tile ground for new friendships and relationships.

Michael Briggs contd from p. 16

We Can Help

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Visit our new website: fletchertilton.com

• Special Needs Planning

• Transition Planning & Adult Services

• Guardianship & Considering Alternatives

• AdvocacyFor more information call our Special Needs Practice Group leader, Frederick M. Misilo, Jr., at 508.459.8059 or email him at [email protected].

Early in Michael’s childhood, his parents placed a strong importance on integrating their middle son into the Andover community, where the family has lived since 1986. They found a perfect match for Michael in Ando-ver’s Hooptown basketball camp, run by Golden Warriors varsity coach David Fazio.

“We have always pushed for Michael to be in the main-stream because that is the world he will have to live in when he gets older,” said Kim, a speech language pathologist at the Professional Center for Child Develop-ment in Andover. “We felt like Hooptown would be a perfect testing ground. Michael loved basketball, why not start with Hooptown?”

Any early concerns David and Kim had about how their son would be welcomed into the Andover basketball community were allayed when Michael arrived at the basketball school. “The kids were just unbelievable to Michael,” said David. “You never know how anyone is



Friendship Corner

Most parents think back on their kids’ childhoods and it feels like a blur — it goes by so quickly. It’s

Singing his partBy Daphne Romanoff

like that with my daughters, but not so much with my 23-year-old son, Ben. Ben is autistic – not high functioning, rather somewhere in the middle of the autism spec-trum. In his case, this means that he lacks some basic social and communication skills necessary for him to function independently. It’s been a very slow, constant, incremental struggle to teach him how to live in our world, not his own.

Ben is at the tip of the large au-tistic population which has been

more included in society than ever before, first in public education, now increas-ingly in the workplace. “Special” and “inclusion” have been pendulum points all of Ben’s life. Although some autistic children can be successfully included in regular classes, Ben has need-ed intensive, specialized training in the nuts and bolts

issues of eye contact, attention, behavior management, language, academics, vocational training, and more.

Ben has been trained and now works independently in regular, busy kitchens — not segregated work enclaves. Working alongside his co-workers, he can fill con-tainers with mayonnaise, chop carrots, follow a simple recipe, and take out the trash. Ben loves music and has always been very attuned to auditory sensations. In fact, music can be distracting to him in some of the food prep jobs he’s worked at — he’ll start singing and forget to cut the croutons.

Now that he has become an adult and aged out of publically-funded education at age 22, I’ve felt like I can step back and reflect upon Ben’s experience as a whole. Although he has accomplished a lot, poignant questions still loom: How will he progress as an adult? How will he find pleasure in life? Where will he fit in? Where will he find harmony?

He did not have to go far, as it turns out. Ben’s ultimate inclusion activity is singing with our local community choir.

The Newton Family Singers is an intergenerational group of singers whose repertoire spans traditional American folk through more recent pop. The singers range

Come Home to New England

Our Village was founded in 1972 by parents seeking an enlightened new model of community living for their adult children with intellectual and other developmental disabili-ties. Today, 79 residents live on our Pembroke campus andwe serve more than 75 others through our day habilitation, employment and community programming.

We currently have openings and are accepting private and state-sponsored referrals.Call (781) 293-5461 x103 or email [email protected] schedule a tour or to request information.

New England Village• Pembroke • Hanson• Kingston • Plymptonwww.newenglandvillage.org

New England Village that is!

Ben Chelminsky


Achieve with us. 19

Friendship Corner

from age 5 to more than 70. They are a neighborhood group, with no auditions to join, yet they took a gamble by admitting Ben into their choir. We had visited a number of choirs in search of a place where Ben was most likely to succeed and to push him to that next step beyond his comfort zone – and mine.

While the Newton Family Singers have made no special accom-modations for Ben, he has been welcomed as a member of the choir. Having a deep voice, Ben sings in the bass section and his fellow bass singers help him when he needs it. They support him and he’s learned to respond to their prompts to pay attention and to find his place in the sheet music. I don’t think Ben can form friend-ships as such but I know he looks forward to seeing the other bass-es. Furthermore, they’ve come to accept Ben as one of their own.

Things aren’t perfect. I hear Ben’s voice when he comes in too early and I notice when he somewhat subtly flicks his fingers – an old autistic behavior of his. As part of his disability, Ben does not under-stand that different people have different perspectives. As a result, he used to sing along with solo-ists, or the sopranos — whatever part had the melody. He didn’t recognize that people with dif-ferent vocal ranges sang different parts. Ben has been taught the fundamental skill of imitation, and

he knows that applause is expect-ed after performances. That’s why, if you attend one of our concerts, you will see one young man in the choir clapping along with the au-dience at the end of every song. Maybe one day he won’t clap with the audience, one day he will understand the different perspec-tives of being a performer versus an audience member.

This past season, however, Ben has learned that he is a bass and sings from that perspective. He listens to the other parts of the choir and understands the har-mony that makes beautiful music. Maybe by singing in harmony, Ben is learning perspective taking through song.

I no longer come to rehearsals as Ben’s aide; caught up in the music and friendly faces, I’m now a soprano singing with the Newton Family Singers. I rehearse at the opposite side of the choir, with an eye on Ben from afar. We have two entirely different parts to sing and Ben learns his lyrics much faster than I do.

Time continues to speed on, and Ben’s progress still moves in slow motion. But slow doesn’t mean standing still.

He’s on stage, and he’s singing his part. In harmony. With his community. And with me.

For more information about the Newton Family Singers, visit their website http://www.newtonfamilysingers.org

Singing his part contd from p. 18

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Offices


Friendship Corner


going to act. You never know how the kids or the program are going to react. But they accepted Michael as a member of the family. Our only regret is that we didn’t take him to Hooptown earlier. But we are glad we did because of all the joy that it has brought to not just our family but the entire basketball community.”

Now a fixture at Hooptown — first alongside older brother Christo-pher (now 19) and eventually with younger brother Jonathan (10 years-old) — Michael had a new dream when he arrived at Andover High as a freshman last year. He wanted to play basketball for the Golden Warriors.

After some initial concerns there might not be a spot for Michael, David decided to be proactive. David said, “So we went directly to Fazio. Our older son had played JV basketball for Faz, so he wasn’t a total stranger.His reaction and the reaction of the program were beyond what anyone was expect-ing. Faz had no reservations about making him part of the program.”

Briggs would need a coach to work with him as a one-on-one aide, a job that was happily taken by San-born Elementary School physical education teacher and freshman football coach Ben Gibson. “Mike is such an awesome kid,” said Gib-son, known affectionately as “Gib-by” to Briggs. “His being here is something that is great for Michael and great for all of the kids on the

team. They all work together as a team and learn from each other. Mike is a goofy, likable kid. Plus, he has been in school with these kids since elementary school.”

As a freshman, Briggs played on the Andover freshman team, coached by Michael Votto, seeing playing time at the end of games already decided by lopsided scores. “Freshman year was a great year,” said David. “Michael had a great time. In a game against Phillips, I have never seen anyone get up so many shots in such a short time. But he showed his basketball knowledge because he was keep-ing track of the clock. He made sure to get a final shot off right before the buzzer.”

Once this winter arrived Michael, now a sophomore, followed many of his classmates to a new chal-lenge on the court, playing for the JV team. “He is a sophomore and the natural move was for him to go to the JV team,” said Hibino.“We are thankful he wants to be part of this program. He loves the game and has worked so hard to earn his spot on the team.”

The dream shotAs the ball left Briggs’ hands and sailed through the net, the en-tire packed house at Dunn Gym erupted into cheers.

It didn’t matter that the junior var-sity game between Andover High and archrival Central Catholic on January 10 was well out of reach. The gym was already stuffed with a

sold-out crowd of more than 1,000 fans prepared to watch the varsity game when Briggs took the court in the closing moments of the JV game.

Briggs then took a pass and knocked down a short jumper, sending the capacity crowd into hysterics, with fans of both teams rising to their feet and applauding as if he had just won a state cham-pionship. The Andover student section loudly chanted “Michael! Michael!” and more than a few spectators had tears falling down their cheeks.

“It was unbelievable,” said his mother, her eyes misting with emotion.“You are already so proud of what he did. But then the crowd reaction and (the Andover High student section) The Jungle chant-ing his name, it is just something you never imagine. You knew he had done something special.”

Michael’s father was equally emo-tional. “I still have goose bumps,” said David, who coaches Michael’s Special Olympics team. “This is something we never expected. Michael has scored in games be-fore, but never in front of a packed house like that. I was so happy for him. It was really incredible.”

His family wasn’t the only ones touched. “I know I saw a few tears in the stands,” said Hibino. “I was so proud to be his coach and the kids were proud to be his team-mates. For the entire Andover


Achieve with us. 21

SUPPORTbrokers

MAKE YOUR PLANBECOME A REALITYThe 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 StreetWaltham, MA 02453Phone: 781.891.6270 EXT109E-mail: [email protected]


community to support him like that was really special.”

One moment especially stuck out to Gibson. “One of the best parts is that one of the other kids, D.J. Minor, said to me after Mike hit the shot, ‘That is the best assist I will ever have,’” he said. “To hear him make a com-ment like that really shows that he gets it. The kids fight harder than ever to try to get Mike the ball so he can take another shot.”

Briggs hasn’t stopped shooting since. Entering contests when the game is out of reach, he recorded two bas-kets against Lawrence on January. 24, and on Friday he sank a shot against North Andover. “There is no holding him back,” said Kim. “We asked Faz how he felt after his freshman year and he told us, ‘Michael is golden for the next four years.’” For Michael, every shot counts. “I love to shoot and when I can make a swish I am really happy,” said Michael. “And being out there with my friends is fun.”

For a video feature on Andover’s Michael Briggs, visit eagletribune.com/sports or youtube.com/user/theeagletribune

Editor’s Note: This is an abridged version of a longer story that first appeared in the Eagle-Tribune on February 9, 2014. We are grateful to David Willis and the Eagle-Tribune for permission to reprint it in Advocate.

Transition is about planning for life. The transition your son or daughter will make from school to adult life in the community is a long journey beginning at age 14 through 22 years. Transitional services include postsecondary education, vocational education, integrated (and sup-ported) employment, continuing adult education, adult services, and

Unsure what to do before your son or daughter reaches age 22?independent living or community participation.

If you want one-on-one help from a transition expert, sign up for a problem-solving session provided by SUPPORTbrokers of The Arc of Massachusetts. A broker will help you tackle problems and propose solutions by brainstorming ideas and giving you options, guidance,

and resources geared toward your child’s needs, strengths, preferences, and interests.

One hour, individualized clinics will be provided at The Arc of Massa-chusetts (217 South St. Waltham 02453) on a monthly basis. Clinics will also be available in Central Massachusetts beginning this spring. Visit The Arc’s website for the current Transition Clinic dates and locations. Cost is $50 per hour.

Anyone who has a son or daughter with an intellectual or developmen-tal disability is welcome to register for a session today by calling or emailing Kerry Mahoney, Director ([email protected] or 781-891-6270 ext. 109).


SupportBrokers

A Support Broker is someone you hire to find supports you need to help you at home, school, your job, and community. Most people who use Support Brokers are persons with disabilities and/or families sup-porting someone with a disability.

Support Brokers know how to get different kinds of help and support. They can help you find transporta-tion, a place to live, someone to help you with daily living skills, or a job counselor, or they can link you with your community, help with social security or health insurance, and many more things.

A Support Broker will spend time with you to learn about your needs and goals. The Broker will help you write a plan to get the supports you need. First, the broker helps you describe the supports you decide you need. Then, the broker helps you find those and put them into place.

Here are two of our current SUPPORTbrokers

Pat Pakos has dedicated her life to educating and improving the lives of individuals with disabili-ties, initially in her role as a Parent Educational Advocate, then as a school PAC president for six years, a board member of the Federation for Children with Special Needs for five years, the founder of an after-school program for children with special needs, (Project STAR), and as a member of a DDS Children’s Advisory Board. As her daughter reached the age of 22, Pat and

Who are the SUPPORTbrokers?

her husband entered into the first public/ private partnership with the Department of Developmental Disabilities in the Merrimack Valley. This innovative partnership allowed her daughter to remain in her own home with 24 hour supports pro-vided by DDS.

Pat has worked as a consultant to school systems and has been employed by the Department of El-ementary and Secondary Education as an Inclusion Facilitator. She was a facilitator on a supported work pilot project on the North Shore sponsored by the Department of Developmental Disabilities and Massachusetts Rehabilitation Com-mission. She recently completed a three-year transition grant working with three school systems and ten families. Presently, Pat works for The Arc of Massachusetts as a Sup-port Broker focusing on Transition, Person-Centered Planning and the needs of the disability com-munity. She sits on a DDS Adult Advisory Council and the State DDS Advisory Council. She earned her M.S. degree in Severe Special Needs from Simmons College with

a focus on Inclusion and her B.A. in English Literature from the Univer-sity of Maryland. Pat remarks “It is very satisfying to assist families in problem-solving and unlocking the complexity of the human service system, the disability world and the special education system.”

Christine Shane, PhD. has served as an advocate for individuals with disabilities and their families for many years. She is currently Chair-person of the Behavioral Sciences Department at Fitchburg State University and serves as Chair of the State Advisory Council of the Massachusetts Department of Developmental Services. Dr. Shane specializes in the evaluation and implementation of programs for children and adults with disabilities and currently provides consultation and training to schools and non-profit agencies. She earned her doc-toral degree from the Heller School for Social Policy and Management, Brandeis University. During her graduate studies, she worked closely with Dr. Gunnar Dybwad and Dr. Wolf Wolfensburger.

Pat Pakos

Christine Shane, Ph.D.

Achieve with us. 23

News from the chapters of The Arc

Attleboro resident’s new-found friends help him get back home

By Rick Foster, Sun Chronicle Staff

Bob Deshetres unexpectedly spent two days in Detroit recently when a blizzard delayed the disabled man’s diverted airline flight. But staff members of The Arc, a na-tionwide advocacy organization, worked together across hundreds of miles to make sure he got home safely.

Deshetres, 68, of Attleboro, is in-tellectually disabled and had flown to Florida in December to spend time with his mother and sister. He was due to leave on his return trip on January 6, but his initial flight was delayed and a substitute plane was diverted to Detroit, where the airport was soon shut down by snow.

“I had to stay overnight in the air-port,” said Deshetres, one of about 2,000 intellectually disabled per-sons served by The Arc of Bristol County. “I had a blanket covering me, but it was cold.”

Deshetres, who stayed in regular phone contact with local Arc Presi-dent and CEO Michael Andrade and team supervisor Sandy Boyer, quickly became the target of a rescue effort linking Arc offices in two states. Airport security person-nel also got involved to help the Attleboro senior.

Local Arc officials, unable to find alternate transportation for Deshetres, reached out to The Arc

of Dearborn Director Lisa Nygord. Nygord went to the airport as soon as she heard, and contacted Deshetres. She and her husband brought the 68-year-old to eat at Chili’s and found him a hotel room. They also returned the following morning to shuttle the weary traveler to his early morning flight back to Providence.

Later that day, Deshetres arrived safe back in New England. “It seemed like it was a long time since I’d seen my apartment,” said Deshetres, who added he was grateful to his Arc protectors.

The Arc of Bristol County Director of Development Patricia Kirby said the interstate effort on Deshetres’ behalf was heartwarming, but not surprising. “People who are in this work are in it because they care,” she said.

Boyer said she found Deshetres’s safe return and cooperation be-tween agencies hundreds of miles apart particularly rewarding. “I’m just proud that the agency I’ve devoted so much time to, being a national organization, was there to help halfway across the country,” she said.

Deshetres said that in several trips to visit Florida, this was the first time he’s ever been marooned in an airport. He said he doesn’t harbor any fears about flying again. “Probably not in the winter, though,” he said.

Editor’s Note: This story was origi-nally published in the Sun Chroni-cle on January 31, 2014 along with the photo by Mark Stockwell. We are grateful for their permission to include it in ADVOCATE.

There were several things that led to a positive resolution of what might have been a dangerous situation for Bob Deshetres. First and foremost, of course, was the kindness and resourcefulness of so many people. But another important factor was the good sense displayed by Bob himself. When Lisa Nygord first met up with him in the Detroit airport, he said “I’m not going with you, I don’t know you,” showing that he had mastered the lessons he had learned in The Arc’s safety classes.” It was only when Lisa showed him her busi-ness card with The Arc logo that he relaxed, saying “Oh, I know The Arc. I can go with you.” He also had Michael Andrade, President and CEO of The Arc of Bristol County, confirm over the phone that this was a safe person for him to go with.



Leigh Ann Barry came to The Arc of Greater Plymouth looking for meaningful work that would give her lots of “people contact.” Leigh Ann is friendly, energetic, ambi-tious and determined, and she is an insatiable learner, committed to earning her GED through the Plym-outh Public Library tutoring service. She has participated in paid intern-ships at Old Navy, Chartwell’s at Massachusetts Maritime Academy, the Chamber of Commerce, and Plymouth Fitness. Following her internship at Plymouth Fitness, she was hired part-time. Leigh Ann is a natural leader and has taken an active part in getting the Arc Employment Services Committee

Good training, skills building, education and self-determination create opportunities for

self -advocate at The Arc of Greater Plymouth (AEAC) organized and functioning. The group meets weekly and their mission is to find jobs for them-selves and others while giving back to the community. Leigh Ann’s enthusiasm is contagious.

In June 2013 Mass Advocates Standing Strong came to The Arc of GP to present a workshop/train-ing for self-advocates. In August, the team, Explore-Prepare-Act, led by Coordinator Ed Bielecki, sent a letter requesting new team mem-bers for the Southeast Region Team and Leigh-Ann responded. After an initial interview with Ed Bielecki and a second interview with mem-bers of the Explore/Prepare/Act team, Leigh Ann was accepted and began further training to prepare presentations for speaking engage-ments throughout the Southeast Region. The team’s mission is to tell their personal stories and help oth-ers with developmental disabilities find their own voice to speak up for what they want and need.

Leigh Ann has always been very passionate about advocacy on behalf of herself and others and

participates in a self-advocacy group at The Arc of Greater Plym-outh. Noticing an unsafe section of parking lot within Plymouth’s Cordage Park, Leigh Ann began writing letters to the management company to ask for a crosswalk to be put in place. After many let-ters she was indeed successful. A crosswalk was installed making the entire office park safer. With a peer, Leigh Ann has been petitioning the building management for a ramp to be installed on one of the side-walks heading towards a gazebo that is used as a gathering place for fire evacuation at Cordage as well. Leigh-Ann and other individuals have also visited the State House to thank the legislators for their past support as well as writing a letter to the Governor about what disability supports and services are important to everyone in the group for the 2015 Budget.

Congratulations Leigh Ann. You will be an exceptional addition to the Southeast Region Explore-Prepare-Act Team!

Leigh Ann Barry

Target Your Advertising

Achieve with us. 25


Minute Man Arc board leader wins prestigious award

The Board President of Minute Man Arc for Human Services in Con-cord was honored for outstanding leadership by the Middlesex West Chamber of Commerce on January 23rd. Nancy Graham, a Vice Presi-dent of Middlesex Savings Bank Commercial Lending, received this prestigious award at the Chamber’s annual Awards Dinner and Scholar-ship Fundraiser.

“I am both honored and humbled to receive this award,” said Nancy. “Minute Man Arc is a wonderful

(L-R) Jean Goldsberry, MMA Executive Director and Nancy Graham, MMA Board President

organization that works hard to improve the lives of individuals with developmental disabilities. The agency is integral to the wellbeing of our community and I’m delighted to assist them in improving lives of an underserved but joyful population.”

Each year, individuals and business-es are recognized by the Middlesex West Chamber for their outstanding volunteerism, best business prac-tices, dedication to those in need and commitment to excellence both personally and professionally. The Chamber comprises an eight town service area and more than 325 members.

The Arc of Bristol County Launches Pooled TrustIn collaboration with Bristol County Savings Bank’s Financial Advisory Ser-vices (FAS) division, The Arc of Bristol County has announced a new finan-cial solution for families of persons with intellectual and developmental disabilities and the elderly. The Arc of Bristol County Pooled Trust is a very useful estate planning tool to protect an individual’s public benefits and still save significant amounts of money for their future use. By pooling funds, each individual account in the pooled trust yields more productive divi-dends for investments purposes in accordance with the value of their account balance.

“The Pooled Trust is a great option for families of moderate income, who wish to provide for their family member’s future needs,” said Michael Andrade, President and CEO of The Arc of Bristol County. “Families do

not have to be associated with The Arc to participate in the Pooled Trust. We are happy to offer this service to whoever needs this safe and afford-able financial tool.”

Families are often faced with a dilemma trying to assist a relative who is dependent on government assistance. Individuals with disabili-ties and the elderly may have needs beyond what is covered with govern-ment benefits, but have few ways to fund those needs without risking disqualification from benefits. The Pooled Trust offers a safe way to fund supplemental needs without risk, ensuring disbursements are made as the family has instructed and compli-ant with MassHealth regulations.

The Arc of Bristol County and Bristol County Savings Bank’s FAS, in its role as Financial Trustee, will work closely

with individuals and family mem-bers to provide the guidance for responsible life financial planning. The Arc’s experienced staff extends all stages of advocacy with individu-ally focused support, and enroll-ment legal advice. The Arc’s Pooled Trust ensures the needed reporting and recordkeeping are completed, so families can have be more at ease regarding the supplemental needs for their relatives.

“We look forward to continuing our work with The Arc of Bristol County as we enter the next stage of this program,” said Patrick J. Murray, Jr., President and CEO of Bristol County Savings Bank. “As Financial Trustee of the Pooled Trust, we are excited about getting started and helping local families gain peace of mind about the financial future of their loved ones.”



Spring arrives each year in New Eng-land to cure the inevitable cases of Cabin Fever (or CF). CF typically ar-rives in November and can gradually worsen the condition of the afflicted over the course of 4-5 months. Yet, each year Spring comes to the res-cue. It is up to each of us to fill the prescription and take our medicine…get up and Go Outside!

We live in a very technologically driven society, especially in a coun-try such as the United States. With advances in technology, there have come many benefits and innova-tions. However, these advances have inadvertently led to the reduction of time spent outdoors, especially within nature. Many children and adults spend more and more time in front of a screen and less and less time exercising or simply being in a natural setting. We all could benefit from more time enjoying the great outdoors. This can be especially true for individuals with ASD and other

Go Outside!By Brian J. Clark, Director, Family Autism Center, The Arc of South Norfolk

developmental disabilities.

The term “nature-deficit disorder” was coined by author Richard Louv in his book “Last Child in the Woods” to de-scribe what happens to young people who become discon-nected from their natural world. Louv links this lack of na-ture to some of the

most disturbing childhood trends, such as the rises in obesity, attention disorders, and depression.

What better time to take advantage of what nature has to offer than Spring in New England? A beauti-ful time of year. One of rebirth and renewal.

We have all spent what seems like a particularly brutal winter, holed up in front of our tv, tablet or smart phone, waiting for the tempera-ture to rise. And that’s ok! I use my smartphone all the time - a fabulous invention. Technology has also been extremely beneficial to individuals with Autism and disabilities in gener-al. It can help with communication, learning, processing of information and of course, provide entertain-ment. This should not be dismissed.

However, in my opinion, technol-ogy is taking up too large a portion in the lives of our children. It is far too convenient. There needs to be a

healthier balance between technology and nature. There is room for both.

Living in Massachusetts and New England in general, we have the benefit of many protected natural spaces and parks within a short drive. So, how about striking a technology/nature balance? Go on the Internet, use google maps, type in your home address and take a look at all the green spaces within 10 miles of your house. You will be surprised. The Department of Conservation and Recreation in MA has a great website where you can search for a park near you. A simple walk in the woods will do you wonders. Turn off your ringer and just let your mind wander. And it’s FREE!

For those with kids, you will be amazed at the fun they can have by just going in the woods. Let them get dirty and tired. Let them spend an hour of their lives not hearing a car or seeing a house or building. For those with physical disabilities, there are a surprising number of parks with paved pathways, as well. Being in nature will allow our children to relieve stress, heighten their senses, lead to an appreciation of their world and allow their mind to work in a different way.

Then, if they want to watch some TV after dinner, you won’t feel so bad. That’s balance.

Go outside…no walls, no cars, and no screens. Unplug for a little while, its good for you!

The Arc of South Norfolk’s Family Autism Center & Family Support Center offer hiking programs, family campfires and outdoor-based activities

Achieve with us. 27


How important is independence?

“It makes me just like everyone else. Not disabled. Like everyone else here,” self- advocate Donna Jay said, gestur-ing around a coffee shop near her Salem condo during a recent interview.

Donna’s determination and Northeast Arc’s support of her goals have led to a rich community life for the 57-year-old woman. She worked hard from an early age to build the kind of life she wanted.

“I was living at Hogan and I heard that The Arc was opening a house in Gloucester. I knocked on the door and said I wanted to go. I got out of there (Hogan) when I was 17,” Donna recalled.

Once connected with Northeast Arc’s residential services, Donna began developing independent living skills, learning with her Gloucester house-mates how to be safe in the commu-nity and in the kitchen, budgeting and other daily living skills. She tried her hand at several jobs, including work at a department store and a hospital before her 27-year career at a plas-tics manufacturer in Salem. Donna explored and developed her artistic talents through ArcWorks, the art pro-gram offered through Northeast Arc’s Recreation Department.

Today, Donna has her own condo, with independent living supports from Northeast Arc; has begun a second career as a mentor; shows her paint-ings in local exhibits; serves as First Vice President of Mass. Advocates Standing Strong and raises money for people in

Donna Jay: A passion for helping other people By Susan Ring Brown, Northeast Arc

need. “I have my own place and I love it. I’m happy in the com-munity. I got what I want,” said Donna.

Her work as a men-tor and with North Shore Self Advocates (a group she founded) helps her neighbors with disabilities get what they want as well. She has been a popular speaker at Salem High School and for the Northeast Arc’s Transition Program, support-ing students with disabilities on their journey to adult life. What advice does she give? “They need to think about what they want to do and ask ques-tions.” She says. If they are looking at a housing option with other room-mates “they should visit and see how they like the house. Go for dinner,” Donna recommends.

Donna speaks out on issues affecting people with disabilities at the State House and is planning a trip to Wash-ington D.C. this spring. “I help people to have a voice,” she said.

Donna’s interest in helping other knows no geographical boundar-ies. Last year, she raised money for school, medical and personal supplies for poor children in Africa. Then she travelled with a group of neighbors to Senegal to deliver the donations. In addition to the supplies, Donna brought four pairs of sneakers for the children and literally gave them the

sweater off of her back. “They all need a friend,” Donna said of the children she met. “We’re rich compared to them. They have nothing.”

The trip provided Donna with a chance to utilize the skills she has learned through The Arc and gave her a chance to learn about a differ-ent culture. Because of the health care training she’s received from The Arc, she was the only member of her party not to get sick on the trip. She enjoyed learning about her hosts’ religious customs and attending a prayer service. “They wear scarves on their heads and long sleeves. It was an honor to be invited to participate,” said Donna.

Like many of her fellow baby-boom-ers, Donna now finds trips without a volunteer component less interesting. In the future, she hopes to visit Haiti with a relief organization. “That’s what I love to do. To help other people and still have a good time,” concluded Donna.

New Friends – Donna Jay (front row, third from right) with traveling companions and new friends in Senegal. “The kids cried when I left. I’m going to go back. You’re never done seeing things in Africa. ”


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Bay Cove Human Services partners with The Arc on HealthMeet® The Arc is pleased to announce that Bay Cove Human Services, Inc. (BCHSI) is becoming a partner on the national project called Health-Meet®. The goal of HealthMeet® is to reduce health disparities and increase the longevity and quality of life for people with intellectual and developmental disabilities (I/DD) by providing free community-based health assessments and individual-ized recommendations for follow-up care.

The project is part of a national effort led by The Arc of the United States, in partnership with the Centers for Disease Control (CDC). Through this project, five states or regions of the United States have the opportunity to pilot local health assessments, provide assistance with health care navigation, and lead health promotion activities for people with I/DD. “With cutting-edge technology and a network of top-notch partners, this project has the potential to uncover eye-open-

ing information about the health of the millions of people with intel-lectual and developmental disabili-ties in this country,” said Peter V. Berns, CEO, The Arc of the U.S.

“We are very excited that Bay Cove Human Services is joining this col-laborative,” said Leo V. Sarkissian, Executive Director of The Arc of Massachusetts. “It is a well-respect-ed human service agency and its work will advance the project.” Mary Jo Cooper, Vice President DD Services, BCHSI added. “We are overdue for a comprehensive study to determine, quantify, and plan for the health needs of this growing and aging population. It is exciting and encouraging to be part of this project.”

HealthMeet® in Massachusetts is working across the Common-wealth from Berkshire County to Boston. Nationally the project’s additional partners are in North Carolina, Pennsylvania, California, and New Jersey.

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