2016 Winter - The Arc of Massachusetts
Transcription
2016 Winter - The Arc of Massachusetts
Advocate Winter 2016 Governor allocates $5 Million in new Family Support funding The Governor’s proposed budget for Fiscal Year 2017, released on January 27, adds the highest amount for family support from a governor in two decades. An additional $5 Million appropriation is a positive start for our efforts to increase assistance to families. We appreciate Governor Baker’s decision. As we went to press, staff at The Arc were concerned about the need for more funding in a number of DDS accounts (Department of Developmental Services) as well as potential changes in Medicaid. Leo Sarkissian, Executive Director, noted: “We appreciate Governor Baker’s support of families in his budget blueprint. We will work with House and Senate members to more fully address the needs of families, employment and adults turning 22. The “Supporting Families” The Arc of Massachusetts Celebrates 60 Years our 60th Anniversary with more than 500 friends and supporters. “We are very grateful for the generous and enthusiastic support we received from The Arc community, A gathering of some of the 60th Anniversary honorees sponsors, our donors, and local leaders,” said On Thursday, November 19, 2015, Executive Director Leo Sarkissian. The Arc of Massachusetts celebrated continued on page 4 Achieve with us. campaign hopes to reach 5,700 families by the end of 4 years through increases in Family Support, DESE-DDS program and the Autism Children’s Waiver. Students turning 22 need assistance through employment/ day, residential and transportation line items after their first year. The employment budget was short nearly $11 million in the Governor’s budget – this not only affects continued on page 21 Inside this issue... Article Page Government Affairs....................13 Support Brokers.........................15 The Friendship Corner................16 Spotlight on: The Association for Community Living................18 Education and Training..............21 News from the Chapters............22 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 Officers Daniel Sullivan President Tracy Atkinson Vice President Deborah Norton Treasurer Kathy Ricciardi Secretary Frank Sally Immediate Past President Directors Justin Bernard Susan Lodemore Martin Courage Seth P. Lopes Jim Buss Geoffrey Misilo Katherine Craven Sean Morrissey Tim Evans Renald Raphael Adam Hill Kathy Ricciardi Robert A. Hill Janet Rico Judi Kotanchik Peter Tallas Joe Andrade, Director Emeritus 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 Christopher Jenkins Financial Officer Amelia Cordischi Development & Digital Media Associate 2 In Memoriam: Florence Finkel We celebrate the life and mourn the recent loss of Florence Finkel, who passed away on November 9, 2015. The mother of two children, one of whom was diagnosed with a developmental disability, Florence was a founding member of The Arc of Massachusetts and remained an active and contributing member for decades. Known as a compassionate and outspoken advocate, Florence was a member of both The Arc of South Norfolk and the Dever Developmental Center Association. She was president of the board of directors of The Arc of Massachusetts from 1966 to 1968 and served on a variety of committees over the years. Florence chaired the DMR Statewide Advisory Council and was a member of the DMR Human Rights Committee. She also served on the Massachusetts Commission on Mental Retardation. Her array of accomplishments was recognized in 2001 when she received the Gunnar Dybwad Leadership Award from the Commonwealth of Massachusetts and again in 2005 when was honored at The Arc of Massachusetts’ 50th Anniversary celebration. Looking back at the early years of the Arc movement, Florence pointed with particular satisfaction to her successful efforts to ensure quality control of the parent-founded preschool nurseries when their future was in jeopardy (1962-65). She is survived by her son, Donald Finkel, and her daughter, Marcia Hirsch and her husband Leslie, as well as several grandchildren and great-grandchildren. Tailored Financial Services for Families with Special Needs If you are responsible for a family member with a disability or other loved one, you face unique challenges involving complex financial situations. We understand. For the last 15 years we have provided caring, experienced financial guidance to special needs families, helping them pursue long-term financial security for their loved ones through informed estate and tax planning, investment and insurance planning and special needs trust management strategies. Please contact us for a free, no-obligation consultation. It would be our privilege to serve you and your family and help you pursue the long-term financial independence you deserve. special needs financial planning A Division of Shepherd Financial Partners Cynthia R. Haddad, CFP® & John W. Nadworny, CFP® 1004 Main Street Winchester, Massachusetts 01890 (781) 756-1804 [email protected] www.specialneedsplanning.com Securities and advisory services offered through LPL Financial, Member FINRA/SIPC TheArc ArcofofMassachusetts Massachusetts The The Arc of Massachusetts’ home for the future Things are falling into place. The Arc of Massachusetts will soon be breaking ground on a new headquarters and resource center, which will be built on the site of the current headquarters in Waltham. In order to make construction possible, The Arc will temporarily move to a rented space and then return to the 217 South Street location later this year when the new building has been completed. Construction is being funded by the Home for the Future Capital Campaign. At the end of 2015, we had received just over $800,000 in gifts and commitments toward our goal of $1.6 million. In addition to contributions from individual donors, we were awarded grants from the Salah Foundation and Belmont Savings Bank Foundation. The Arc’s current building is rapidly aging. It serves an ever-expanding array of needs and functions such as meeting space and training facilities for dozens of stakeholders in the disability community, administrative offices, and a resource center. A new building will allow The Arc to remain at the forefront of the struggle to build better lives for all members of the community and will help us better serve our core mission. During the course of a month, dozens of meetings involving hundreds of participants, with our partners and others who are part of the disability community, take place in The Arc’s offices. Groups such as Advocates for Achieve with us. Autism of Massachusetts call 217 South Street “home.” According to Chairman Michael J. Borr, “The Arc of Massachusetts has played a prominent role in establishing and partnering with Advocates for Autism of Massachusetts and has hosted AFAM since its founding more than 11 years ago. The Arc not only provides a ‘home’ for AFAM but is aligned with us in advocating on behalf of people of all ages on the Autism spectrum.” We are pleased to be able to offer prominent recognition of campaign donors. Naming opportunities include the conference rooms, offices, outdoor patio, and windows. Gifts of $1,000 or more will be acknowledged on a plaque to be located in the new building’s reception area. In addition, The Arc will recognize donors in print publications such as the campaign honor roll, 2016 annual report, and an issue of The Advocate to be published in 2016. You can help to keep The Arc of Massachusetts as effective and dynamic in the coming years as it has been for the past 60 years by supporting the Home for the Future Capital Campaign. Learn how you can make a difference by contacting Katrin Aback, Director of Development at aback@arcmass. org or 781-891-6270 x105. Specialized Housing, Inc. Working with families to create innovative independent living opportunities since 1983 – home ownership and supported apartments. Specialized Housing, Inc. 45 Bartlett Crescent Brookline, MA 02446-2220 tel (617) 277-1805 fax (617) 277-0106 www.specializedhousing.org 3 The Arc of Massachusetts Celebrates 60 Years continued from p. 1 Celebrating The Arc’s 60th Anniversary Casting bids at the Silent Auction “Contributions from individuals, corporations, The Arc chapters, and human service agencies made the Gala a huge fundraising success. All told, the Gala raised a recordsetting $420,000 in support of The Arc’s programs and advocacy.” Tracy Atkinson, Executive Vice President at State Street Corporation, served as Chair of the Gala. “I was delighted to see so many sponsors and donors participate in this celebration. It truly is a testament to the incredible impact that The Arc has had on disability issues over the past six decades and how very important The A Commitment that Lasts a Lifetime • Special Needs Planning • Transition Planning & Adult Services Arc’s work remains,” said Tracy after the event. To mark this milestone, we aimed to recognize the innumerable advocates, families, public officials, donors, human service agencies, and friends who have worked tirelessly to help individuals with intellectual and developmental disabilities and their families. To do so, we honored 60 individuals and partners, almost all of whom joined us at the Gala. Guests were treated to live entertainment from the Chenery Middle School Jazz Combo during the continued on page 5 • Guardianship & Considering Alternatives • Advocacy For more information call our Special Needs Practice Group leader, Frederick M. Misilo, Jr., at 508.459.8059 or email him at [email protected]. Worcester | Framingham | cape cod 508.459.8000 | www.fletchertilton.com 4 Advocate Ad-Spring '15.indd 1 Auctioneer Tom Weitbrecht 4/7/2015 10:17:22 AM The Arc of Massachusetts The Arc of Massachusetts Celebrates 60 Years continued from p. 4 The Milorin family – honored by The Arc and by the House of Representatives reception. After guests were seated for dinner, Master of Ceremonies Bob Oakes, the host of Morning Edition on 90.9 WBUR, Boston’s NPR News Station, welcomed everyone. He reflected on the challenges faced by persons with disabilities and all that The Arc of Massachusetts has done to fight for their civil rights. The night was capped off by an energetic live auction led by Tom Weitbrecht. Attendees bid on an Instant Wine Cellar, fighter pilot for a day, tickets with backstage tours of Broadway shows, and destination vacations. “Tracy, along with her co-chairs Sue Lodemore and Marty Courage, worked tirelessly to make sure that our sponsors know how important Executive Director Leo Sarkissian and Board President Dan Sullivan the work of The Arc is to people with disabilities and their families,” said Leo. “We were delighted to have State Street join us as our Presenting Sponsor and have Deloitte, Goldman Sachs, Harvard Pilgrim Health Care, and Oliver Wyman as Gold Sponsors.” make a gift online or contact Katrin Aback at [email protected] or 781-891-6270 x105. Thank you to everyone who celebrated with us and to our generous sponsors and supporters! You can still make a gift in honor of The Arc of Massachusetts’ 60th Anniversary and support our advocacy on behalf of people with intellectual and developmental disabilities. Use the donate button to Emcee Bob Oakes of WBUR’s “Morning Edition” Achieve with us. 5 The 60th Anniversary Spotlight Honorees Tracy Atkinson Tracy Atkinson Tracy serves as Vice President of The Arc of Massachusetts’ Board of Directors. Since joining the board in 2009, she has been a generous contributor and provided thoughtful leadership on organizational development. Through her participation, State Street Corporation, where she is an Executive Vice President, has been one of the leading donors to The Arc, strengthening our advocacy on behalf of individuals with intellectual and developmental disabilities. Michael J. Borr Michael J. Borr Michael is Chairman of the Executive Committee of Advocates for Autism of Massachusetts (AFAM), a nonprofit organization founded in 6 2004 to champion the individual and civil rights of people of all ages affected by an Autism Spectrum Disorder (ASD). Since its founding, AFAM has been hosted by The Arc of Massachusetts and the two organizations have collaborated to advocate for legislation and regulations affecting the lives of people with disabilities. Michael and his wife Nancy are founding members of the Family Autism Center at The Arc of South Norfolk. Leadership Award. In 2013, the University of Massachusetts Boston established the James T. Brett Chair in Disability and Workforce Development, the nation’s only endowed chair in disability and workforce development. James Lawson and Edward J. Joyce James Lawson and Edward J. Joyce, Ropes & Gray LLP James Brett James T. Brett Jim became a supporter of The Arc in the 1980s, when he was elected a State Representative from Dorchester. He recently served as the Chairman of The President’s Committee for People with Intellectual Disabilities and continues to serve as a member, as well as serving as Chairman of the Governor’s Commission on Intellectual Disability. A tireless advocate for the physically and mentally challenged, in 2014 he was awarded the John “Jack” Brett Champion’s Award from Special Olympics Massachusetts and was inducted into their Hall of Fame. Also in 2014, the Disability Law Center bestowed upon him the Edward M. Kennedy Ed and Jim have worked together at Ropes & Gray LLP for the last 34 years. Jim has been involved with The Arc since 1990, after his son Andrew was born with Down syndrome and started receiving services from the early intervention program at The Arc of the South Shore. Jim served on its board of directors for more than 20 years, with two terms as board president, during which he helped initiate a capital campaign drive and started a community-based inclusive recreational program. He also served four years on the board of directors of The Arc of Massachusetts and initiated the capital campaign efforts for our new headquarters. Ed has a passion for helping and advocating for individuals with intellectual disabilities. As an estate planning attorney and trustee, he has worked with Jim to secure continued on page 7 The Arc of Massachusetts The 60th Anniversary Spotlight Honorees continued from p. 6 many grants, gifts, and bequests over the years. The largest gift was for $1 million, which was used to support existing and new advocacy programs through The Arc’s network in Massachusetts. He has also helped with the current capital campaign and has generated over $110,000 for this project. Massachusetts Developmental Disabilities Council (MDDC) The Massachusetts Developmental Disabilities Council has collaborated with The Arc of Massachusetts since the Council was created in 1971. Our true partnership began in 1979 with the co-hosting of a legislative reception at the State House, which has become an annual event. Over the years we have partnered on dozens of key policy and budget initiatives, including supporting Massachusetts Families Organizing for Change and Massachusetts Advocates Standing Strong, the Tools for Tomorrow project, housing and education initiatives, systems change grants, self-directed supports, and numerous funding priorities. Our recent successes include the establishment and support of the MA21 partnership for 21st century disability policy, which led to the passage of the Real Lives bill. Neil V. McKittrick Neil, a shareholder attorney in the Boston office of Ogletree Deakins, Achieve with us. Neil V. McKittrick Frederick M. Misilo, Jr. has represented persons with developmental disabilities in several significant lawsuits. The most prominent of these is Boulet v. Cellucci, a class action filed in federal court in 1999 on behalf of approximately 3,000 adults with developmental disabilities. After the court ruled that Massachusetts had violated the Medicaid Act, the Commonwealth agreed to settle the case by providing $114 million worth of services to the class members. Neil served as the Class Monitor to ensure that the Commonwealth complied with its obligations under the agreement. Neil also has filed amicus curiae (“friend of the court”) briefs in the U.S. Supreme Court in other leading disability rights cases. As a result of his pro bono work, Neil received the 2001 American Bar Association Pro Bono Publico Award and the 2001 Massachusetts Bar Association Access to Justice Pro Bono Publico Award. PC. A former Deputy Commissioner of the Massachusetts Department of Developmental Services (19911994), he is a past President of The Arc of Massachusetts (2008-2010) and a member of the Board of Directors of The Arc of Cape Cod. He currently serves as a member of the Board of Directors of The Arc of the United States and co-chairs its Public Policy Committee. Fred has been a compassionate advisor and a dedicated advocate on Beacon Hill and Capitol Hill on behalf of people with intellectual and developmental disabilities (I/DD). Frederick M. Misilo, Jr. Fred has been involved with The Arc both nationally and in Massachusetts for many years. As an attorney, he is Chair of the Trust and Estate Department and the Special Needs Planning and Advocacy Practice Group at Fletcher Tilton Susan and John Nadworny John and Susan Nadworny John and Susan Nadworny are longtime supporters of The Arc of Massachusetts. Their relationship with The Arc began 24 years ago, with the birth of their son James. continued on page 8 7 The 60th Anniversary Spotlight Honorees continued from p. 7 As chairperson of Massachusetts Families Organizing for Change (MFOFC), Susan has collaborated with The Arc on advancing policies for individuals with ID/DD. In 2007 John and his business partner Cynthia Haddad published The Special Needs Planning Guide, which assists families with long-term planning. Susan is a Gunnar Dybwad awardee, and president-elect of the Melrose Rotary Club. John has served on the Governor’s Commission on Intellectual Disabilities, the MDSC board and the Real Lives committee. study Left Out in the Cold: Health Care Experiences of Adults with Intellectual and Developmental Disabilities in Massachusetts (2008). In her former role as Director of the Family Nurse Practitioner program at Simmons College, she advocated for collaboration with The Arc in setting up Operation House Call to include nursing, nutrition and physical therapy students. State Street Corporation Janet Sweeney Rico Janet Sweeney Rico, MBA, NP-BC, Ph.D. A nurse practitioner and leader in the field of nursing and health sciences education, Janet has been engaged in advocating for greater support and health care access for people with disabilities, as well as the elderly, for decades. She currently is Assistant Dean of the Graduate Nursing Programs at Bouvé College of Health Sciences at Northeastern University. Janet served on The Arc board from 2004 to 2010 and began another term in 2014. She also served on The Arc’s Healthcare Committee, which oversaw the publication of the landmark 8 State Street Corporation has been a substantial supporter of The Arc of Massachusetts since 2009. Based in Boston, State Street is one of the world’s leading providers of financial services to institutional investors. The company provides investment servicing and management, trading and research, and data and analytics solutions to institutional clients around the globe, including asset managers, pension plans, insurance companies, sovereign wealth funds and foundations. State Street takes great pride in contributing to the health and stability of the communities in which it operates, with a particular emphasis on education and workforce development. Editor’s Note: A more complete description of each honoree can be found by visiting our website thearcofmass.org/honorees. 60th Anniversary Honorees We are pleased to recognize these individuals and organizations whose many and varied contributions to The Arc of Massachusetts have supported and sustained our efforts over the past 6 decades. Stewards Joseph Andrade Angela and Dan * Becker Ronald and Elizabeth Campbell Vibeke and Gustav Christensen Mark Forziati Donald and Ruth Freedman Richard E. and Edith Frye Sarah M. Gates Philip Gloudemans Dana Graves, D.D.S. Simon Greisdoff * Cynthia and Mark Haddad Evelyn and Robert Hausslein James and Tina Kerkam Susan and David Lodemore Raymond S. and Doris Nickerson Susanna Peyton and John W. Campbell Donald and Elizabeth Stewart Maureen and James Sullivan Theresa and Harvey Varnet Policymakers Rosalie Edes Commissioner Elin M. Howe Senator Barbara L’Italien Gerry Morrissey Representative Tom Sannicandro Senator Karen Spilka Corporations and Foundations The Boston Foundation Burke Distributing Corporation Comcast Business Fletcher Tilton, P.C. continued on page 9 The Arc of Massachusetts 60th Anniversary Honorees continued from p. 8 Harvard Pilgrim Health Care RhumbLine Advisers TD Bank Tudor Investment Corporation UBS Securities, LLC Volunteers and Family Outreach Chris Andry Mary Ann Boulet Lucie Chansky Anne Fracht Diane Glennon Kerry Mahoney Mary Ellen Mayo Henry and Evelyne Milorin Pat Pakos The Eighteen Affiliated Chapters of The Arc of Massachusetts Brockton Area Arc (BAArc) The Arc of Cape Cod The Center of Hope Foundation/The Arc of Southern Worcester County Charles River Center East Middlesex Arc (EMArc) The Arc of Greater HaverhillNewburyport The Arc of Greater Lawrence/ CLASS, Inc. The Arc of Greater Lowell/ LifeLinks, Inc. Minute Man Arc for Human Services Northeast Arc The Arc of Opportunity in North Central Massachusetts The Arc of Greater Plymouth The Arc of South Norfolk The Arc of the South Shore United Arc Greater Waltham Arc, Inc. (GWArc) Agencies Bay Cove Human Services Bridgewell Justice Resource Institute Nonotuck Resource Associates Vinfen * deceased Editor’s Note: A more complete description of each honoree can be found by visiting our website: thearcofmass.org/honorees Berkshire County Arc The Arc of Bristol County The Arc of South Norfolk Family Autism Center is celebrating 20 years! Serving over 700 families throughout Norfolk County and the surrounding communities • • • • Education and Referral Information Support Groups for family members Specialized Social and Recreational Programming Resource Library http://www.arcsouthnorfolk.org/familyautism-center.html Brian Clark, Director, 781-762-4001 Ext.310 Achieve with us. Are you or someone you know in need of assistance and/or supervision of activities of daily living? If you are currently on Mass Health, contact us to find out if you are eligible for Adult Family Care or Personal Care Assistance services. You ma a re y be fer eligi ral b bon le for us! 781-335-3023 [email protected] www.arcsouthshore.org 9 The Arc of Massachusetts would like to acknowledge the following top sponsors of the 60th Anniversary Gala. We invite you to visit www.arcmass.org/gala to see the full list of Gala Sponsors. Thank you very much for your generosity and commitment to The Arc’s mission! Presenting Sponsor Gold Sponsors Silver Sponsors 10 The Arc of Massachusetts Thank you for your support! The Arc of Massachusetts would like to thank everyone who showed their support of our work by making a contribution in 2015. We deeply appreciate their commitment to ensuring that all individuals with intellectual and developmental disabilities have opportunities to lead full lives in the community. As we continue to celebrate our 60th Anniversary, The Arc of Massachusetts remains committed to helping families across the Commonwealth assure the well-being, safety, and happiness of their loved ones. The Arc’s advocacy has made an enormous difference in the lives of the 200,000 individuals in Massachusetts who have disabilities. They are living better, community-centered lives as a result of The Arc’s 60 years of efforts on their behalf. Our work is being made possible by hundreds of concerned individuals, our 18 chapter affiliates, dozens of human service agencies, corporations, and foundations which support The Arc with their gifts, sponsorships, and grants. Thank you all! Please consider supporting The Arc of Massachusetts in 2016. There are many ways you can have an impact on The Arc’s work. Learn more by visiting our website or contacting Katrin Aback, Director of Development, at [email protected] or 781-891-6270 x105. SHARED LIVING Sharing memories and experiences together! For adults 22 and up who are eligible for DDS residential supports Quality care from one consistent and qualified care provider Enhances individual’s skills through powerful role models within the home Caregivers are given case management, training and support Matches are available for individuals of all abilities and challenges with caregivers who share common interests and lifestyles Contact: Tara Jordan, Associate V.P. for Adult Services 405 Washington Street Hanover MA 02339 781-829-1240 www.CushingCenters.org [email protected] Achieve with us. continued on page 12 11 Operation House Call: Jack’s Story Operation House Call (OHC) is fortunate to have 170 families teaching doctors through our medical school training programs in Massachusetts. We are especially lucky to have the Dollar family. issues. He is unable to communicate verbally, has a feeding tube, and uses a wheelchair. Jack has had countless hospital stays, doctors’ appointments and medical procedures over the years. Robyn Dollar is OHC’s Family Coordinator and has been a family volunteer for many years. Jack is her 7-year-old son who loves music, school, balloons, playing games on his iPad, and taking walks along the Charles River with his family. Jack has loving and devoted parents and an energetic and adoring 4-year-old sister named Charlotte. Jack has Down syndrome. He also has a seizure disorder which has caused him many medical issues over the years, including chronic gastro-intestinal and respiratory When Jack was a baby, his family began welcoming medical students into their home as a part of Operation House Call. When students visit the Dollar family, they get to meet and play with Jack and Charlotte and learn about what life is like for everyone in the family. They get to talk to Jack’s parents about their experiences with Jack’s health care providers over the years, as well their everyday joys, challenges, community supports and resources. Through these home Have You Considered the Benefits of Berkshire County Arc's Pooled Trusts? • Master Special Needs Pooled Trust • Family Special Needs Third Party Pooled Trust It may be a future planning solution for the individuals we serve. Protect your family member's assets, while preserving public benefits. visits, Jack’s family provides medical students with insight from a patient’s and a parent’s perspective, in hopes that it will bolster students’ confidence and compassion as they treat and interact with patients with intellectual and developmental disabilities in the future. The Arc was excited to highlight the Dollar family and Operation House Call on WBZ-TV on February 1, expanding public awareness of the day-to-day experiences of families such as the Dollars. If you are interested in learning more about OHC or making a donation to help us sustain and grow this program, please contact Maura Sullivan, Program Director, at 781530-8274 or [email protected] MAKE YOUR PLAN BECOME A REALITY The mission of the SUPPORTbrokers program is to assist individuals with disabilities and the elderly to achieve community membership based upon their personal vision We offer the best fees in Massachusetts. For more information on the BCArc Pooled Trusts, call 413-499-4241, ext. 227 or email [email protected]. '&tic �County Arc 12 BERKSHilBXNK AsSET MANAGEME T/TRUST GROUr" America's Most Exciting Bank 217 South Street Waltham, MA 02453 Phone: 781.891.6270 EXT109 E-mail: [email protected] www.supportbrokers.org The Arc of Massachusetts Government Affairs Legislative Update – The Arc’s Bill Platform The Arc has twenty-two bill priorities for 2015-2016. Each bill has been heard by the appropriate Joint Committee. The hearings took place late into the fall with excellent advocacy efforts in standing-room-only sessions. The Arc provided testimony for our top priority bills, with comprehensive knowledge and emotional and personal stories to connect the committee to the issues faced by our community. Critical followup to each member of the Joint Committees has been done and The Arc has reached out to our Government Affairs committee, self-advocates, families and our partner organizations to reinforce our efforts with their respective lawmakers. Our priority bills will significantly help support people with I/DD and autism in the need for more highquality medical care, greater access to medical care, flexible housing options, more inclusive higher education opportunities, civil rights and community inclusion, transition to adulthood, and coordination of mental health services and supports. At present, the committees have Supporting Families of Massachusetts: One of The Arc’s budget priorities As we move into “budget negotiation season,” The Arc is working hard to prioritize our efforts to supporting families in Massachusetts who have a loved one with autism, I/DD living at home. We are working with leadership and lawmakers. We have asked for increased funding to help almost 6,000 families who have intensive needs. The budget line items affected by our “ask” are: 1. Family Support 2. DESE/DDS Program 3. Autism Kids Waiver. Achieve with us. The Arc, along with ten other organizations in Massachusetts, believes that helping families to be strong and resilient pays off for our communities. Supporting families is the right economic solution and the right thing to do. In this day and age of community inclusion and accommodations, residential placements can be avoided. For more information on the Supporting Families of Massachusetts Campaign, and contact information, please contact Maura Sullivan at 781 891-6270 or [email protected]. You can also visit our webpage and find us on Facebook. been receptive and there is movement in some of the proposed legislation, but The Arc can still use your help. You can view our bill platform on our website (thearcofmass.org) under the advocacy tab. We need calls, visits or emails to your legislators to educate them on the positive impact of these bills. Ask them to encourage the chairs of the respective committees to pass these bills on favorably. For more information on the bills, and contact information for the Joint Committee members, please contact Maura Sullivan at 781 8916270 or [email protected]. Save These Dates! Wednesday March 9, 2016 The Arc and MDDC 38th Annual Legislative Reception at the State House – 10:30 a.m. Thursday April 7, 2016 Autism Awareness and Acceptance Day at the State House – 9:30 a.m. April 11-13, 2016 Disability Policy Seminar in Washington DC 13 Government Affairs Action begins on the Fiscal Year 2017 Budget The legislative budget process is in full swing. The Joint Committee on Ways and Means, chaired by Senator Karen Spilka and Representative Brian Dempsey, will hold hearings in February as you receive this news. The budget will work its way through the House and Senate, then a conference committee, and finally back to the Governor for his signature. This budget will cover the fiscal year (FY) beginning on July 1, 2016 and ending June 30, 2017, thus it’s the FY 2017 budget. The debate on taxes -- with many voters wanting them to be reduced or stay level (federal and state) -- means that “our community’s” advocacy is more important than ever. For example, every year, we have 800 students graduating from school and needing services (many others graduate and go on without DDS or other agency funding). Another group of students will be eligible through the new program on developmental disabilities. Over 500 students applied thus far, about 200 of them, however, still in school and just registering for eligibility. This may mean that the total number of those turning 22 annually in the future who need assistance will exceed 1000 adults. Support to Families The legislature has supported the “family support” line item (59203000) in the past several years. There are 18,000 families eligible for family support and nearly 10,000 of them receive some support, but much of it is quite limited. 14 The “Supporting Families” Campaign has a goal of increasing the assistance to families through three different line items: family support; and two line items dedicated to families with children, DESE-DDS (5948-0012) and the Autism Children’s Waiver, (5920-3010). Limited growth in Family Support, DESE-DDS and Autism Children’s Waiver means that more families have chosen or will choose residential options. This neither supports families nor is it cost effective. For older parents (there are 3100 families where caregivers are 60 years or older), the lack of additional family support translates into health problems and emergencies. Younger families who have children with behavioral or medical conditions face trying home environments. Eventually those in the toughest circumstances give up. Learn more at Supportingfamilies.org Support access to Adult Services, Turning 22 Turning 22 students from the year before require full year funding each subsequent year. The Turning 22 line item which has NOT kept up with the rise of those in need only covers year 1 after graduation which happens at different times of the year when the student turns 22 years of age. In the following year, funds need to be allocated in line items such as employment/ day (5920-2025), residential (5920-2000), and transportation (5911-2000) for a full year of assistance. These three line items need to grow annually as long as there are new adults who need assistance. 800 new people are eligible each year and 210 of them obtain residential assistance. The employment/day line item needs to support hundreds of students. A shortfall there will affect anyone hoping to obtain job training. Students who are eligible and who have developmental disabilities are funded through the autism omnibus line item (5920-3020). In a few years we will have better knowledge of how many of these young adults will need adult services. Our most recent snapshot suggests 250 will be in need annually. Of course, older adults need services too. There are adults who need more adult services or approach DDS for the first time as their parents age and can no longer provide care at home. Community services touch tens of thousands of adults with intellectual and developmental disabilities (I/DD) throughout Massachusetts. Individuals and families rely on the Department of Developmental Services (DDS) and MassHealth for long-term services. The DDS caseload exceeds 32,000 constituents and their families. To see the specific requests to legislators or review our analysis, you can download information by going to our home page (thearcofmass.org), pick state budget link under Advocacy and scroll down to Governor. The Arc of Massachusetts SupportBrokers Supporting life’s changes By Kerry Mahoney, Director of Education and Outreach* Sarah lived fairly independently for 28 years in a wonderful home located in Brookline, with 9 housemates. She was the first student with Down syndrome to graduate from Lesley College’s Threshold Program. She took the T independently all over Boston, walked to local shops to do errands, had a special boyfriend, and worked at Morgan Memorial. In the spring of 2012, family members and staff became concerned that she might be losing skills. A diagnosis was reached that Sarah was experiencing early Alzheimer’s. Shortly thereafter, The Department of Developmental Services stepped forward with a Priority One for residential placement. Support Brokers was called upon in the summer of 2013 to locate an appropriate residential placement for Sarah. Her father lived in New Hampshire and her mother down on Cape Cod. Therefore, they needed someone local to explore possibilities. It was the parents’ wish that Sarah reside in a home -- properly cared for -- where she could age in place, where she could be with people of varied abilities to encourage a stimulating environment, and one that could accommodate physical and functional changes that may be encountered with aging. The parents wanted the staff to have an understanding of Sarah’s interests such as working with her hands, Achieve with us. drawing, coloring, and rolling yarn, to be able to engage her in activities she enjoyed. They wanted her to have opportunities to go out in the community for recreational and physical activities. Sarah’s Support Broker, Pat Pakos, went to work exploring statewide programs with agencies that might be suitable. Pat also worked with the Service Coordinator from the Department of Developmental Services and explored group homes that had become available. During the course of searching for an appropriate residential placement, a decision was made to search for a new day program also. It took a while but success was reached near the end of 2014. Sarah started an extraordinary day program operated by Hebrew Life in Roslindale at that time. She settled in immediately. Moving day into her new residence was February 7, 2015. She had met her three roommates quite a few times out in the community and shared meals with them. Her family had come to the house a number of times, meeting staff and decorating her room. The family is extremely grateful to their Support Broker, Pat, for the work she did in finding the right placements for their daughter. As a post-script, we have just learned that a fifth roommate has moved into the house. She is a dear friend of Sarah’s from grammar school Sarah Moulton and through high school. What a wonderful reunion! A testimonial from Sarah’s parents: “As a family we cannot say enough about the wonderful service we received over a period of many months from Support Brokers. Words do not seem adequate to describe what a profound impact their efforts made in the life of our daughter, Sarah, and, certainly, in the lives of all of us who have loved her so for close to 54 years. “Sarah is thriving in her new environment because of the compassion, dedication and expertise of our Support Broker, Pat Pakos, who was determined to find the absolutely best available housing option for Sarah’s changing needs. We were all blessed to have her as Sarah’s advocate in this challenging search” *Editor’s Note: Kerry Mahoney is director of The Arc of Massachusetts’ Support Broker program. For more information about Support Brokers, call 781-891-6270, ext. 109 or. email her at [email protected] 15 The Friendship Corner Why friendships between people with and without disabilities matter By Jim Ross Right in the middle of one of our presentations to a parents’ group, one of the mothers who had been listening attentively, stood up and said: “All that talk about people with and without disabilities being friends sounds good, but why on earth would someone without a disability want to be friends with a daughter like mine?” As a professional, I was taken aback. As a parent of two children with disabilities, I was shattered. That was not the only time our message has been challenged. We’ve also heard other comments from family members and support staff: “Sam doesn’t want to meet anyone in the neighborhood. He only wants to hang out with his roommates in our group home.” “We’re her parents and we love her. She doesn’t need anyone else.” “Have her meet other people in the community? I don’t think so. I’ve been Sally’s staff person for over 10 years. No one knows her better. I’m there for her and she’s safe with me.” First, let us be clear. Relationships between people with disabilities and their family members are very important. Relationships between people with disabilities and paid staff are very important. Relation- 16 ships between and among people with disabilities are very important. But why should relationships— including friendships—be limited to family members, paid staff and other people who happen to have disabilities? Let’s explore the issues raised above: “Sam doesn’t want to meet anyone in the neighborhood. He only wants to hang out with his roommates in our group home.” We believe that people should have choice in their lives. That includes being able to choose with whom they are going to spend time. But many people with disabilities have been largely segregated for all of their lives. They may have experienced substantially separate schooling, group homes, sheltered/ segregated employment, day habs, “special” recreational programs, etc. If someone’s life experiences— determined by their service system or society—have been segregated, then it is likely that they won’t recognize inclusion as an option for them. “We”—parents, staff, advocates, etc.—need to be sure that we are extending invitations to be part of the neighborhood in ways that are enticing and positive. I have half-joked sometimes about what my life would be like if the “system” conspired so that I could only associate with others who, like me, have titanium knees and consume Lipitor. “We’re her parents and we love her. She doesn’t need anyone else.” I’m the last person to deny the importance of family. As the oldest of 12 children, the father of 7, grandfather of 3 and proud uncle of 28 nieces and nephews, I have a wealth of family. But I will not be around for my kids—including two with disabilities—forever. And I am not sure how capable my children will be to help watch over each other as their lives change. And I’m not sure how responsive the future human services system will be. The more connections all my kids have with others in the world, the better off they will be. And the more restful I will sleep. “Have her meet other people in the community? I don’t think so. I’ve been Sally’s staff person for over 10 years. No one knows her better. I’m there for her and she’s safe with me.” Staff, especially staff of long duration, are very valuable. But few staff are able to make lifelong commitments to all the people they support. In our travels, staff often acknowledge that they’ve held multiple direct support jobs with dozens (even hundreds) of individuals with disabilities. When pressed, continued on page 17 The Arc of Massachusetts The Friendship Corner Dillon Chevrolet Donates Van to The United Arc Why friendships between people with and without disabilities matter contd from p. 16 they further acknowledge that they have maintained relationships with few, if any, people they supported from previous jobs. This is a pattern we see over and over. There is a clear danger in having staff identify themselves as the primary friend to someone they support. A much more valuable role for staff is to use their time to facilitate connections between the people they support and trustworthy individuals in the community who freely give their time and attention. These trustworthy individuals can include family members and friends of the staff person or people they know through church, neighborhood, clubs, recreational facilities, etc. “All that talk about people with and without disabilities being friends sounds good, but why on earth would someone without a disability want to be friends with a daughter like mine?” Pairs or sets of friends often seem very different to the casual observer. But people gravitate to each other for all kinds of reasons. Often it’s a shared passion for a certain activity. It may be something common, say rooting for the NE Patriots. Or it may be something fairly rare, perhaps an interest in giant snakes. No matter what, it’s pretty easy these days to use social websites to find others who share the same interests. Sometimes an individual has an interest Achieve with us. that seems inappropriate for their age and unlikely to attract others. Those can often be modified though; for instance, adult coloring books are now a rage that both satisfy the urge to color and do it in a social setting with other similarlyaged people. But sometimes people just click. For some people, sitting quietly together in a room with good music is enough to cement a friendship. Or slow drives through the country side. Or remembering each other on birthdays. Or seeking each other out when sad things happen in life. There are an infinite number of reasons why that mother, above, should really be saying: “Anyone would be lucky to be friends with a daughter like mine.” PLAN (L-R) The United Arc’s Adult Services Director Brian Ross, Executive Director, Lynne Bielecki, and Tom Dillon of Dillon Chevrolet, On November 18, the Dillon Chevrolet dealership at 54 Main Street in Greenfield, MA donated a 2008 Hyundai Entourage van to The United Arc. At The United Arc’s main office in Turners Falls, Dillon Chevrolet co-owner Tom Dillon Jr. and his daughter, Brooke Dillon, gave the keys to Executive Director Lynne Bielecki and Director of Adult continued on page 20 of Massachusetts and Rhode Island For over thirty years, providing peace of mind to individuals with disabilities and their families, through individual trust management and social services. PLAN administers a self-settled and a third-party Special Needs Pooled Trust for the benefit of people with disabilities. Offices 1340 Centre St., Suite 102 Newton Centre, MA 02459 (617) 244-5552 28 Spring St. Pawtucket, RI 02860 (401) 330-7456 www.planofma-ri.org 17 The Association for Community Living is a pioneer of innovative services for people with disabilities In 1952, five young mothers of children with developmental disabilities got together and founded The Association for Community Living in an effort to reject the limitations that had been placed on their children. An organization that got its modest start in Hampden County, The Association’s reach now extends across all of Western Massachusetts and even dips into some central parts of the state, and is guided by the idea that all people with developmental disabilities should be welcomed, contributing members of their communities. for people with intellectual disabilities. It was one of the first organizations of its kind in Hampden County. It also established the first developmental day school in the area, the first community residence in Western Massachusetts, the first intermediate care facility in the state, and the first foster care program for people with developmental disabilities in the state. The Association now provides an array of services to more than 830 individuals of all ages and 469 families. Through programs including Community Resources for People with Since its start, The Association has Autism, Whole Children, Family Embeen a pioneer in innovative services powerment, Specialized Home Care, and Valley Tees, the orwhere exceptional women thrive! ganization provides supported living services, case management, employment services, social entrepreneurship, educational advocacy, recreation and enCommunity. Opportunity. Respect. Safety. richment Trusted by families for over 50 years, providing unique residential and innovative programs, day services to exceptional women aged 22 and up. Not just a home…a life. and more. Riverbrook stockbridge, massachusetts 413 298 4926 18 riverbrook.org The Association’s A student at Whole Children in Hadley gets ready to cook lunch, with help from his teacher. recreation and enrichment programs include social skills training, performing arts, and social opportunities. The sexuality education curriculum developed by the organization is used in several local school systems. Through a robust array of services, including educational workshops, support groups, stipends and case management, The Association gives families the tools they need to build a richer and fuller life for their children. The organization also provides a variety of housing options and a range of supports to suit each individual. These options include staffed arrangements, shared living, supported living, and home sharing. In 1974, Specialized Home Care created the model for shared living used generally today out of a firmly held belief that individuals thrive in homelike settings within the strong personal relationships of a home life. In shared living, The Association matches people with developmental disabilities, as well as those with continued on page 19 The Arc of Massachusetts The Association for Community Living contd from p. 18 medical and personal care needs, with families in the community so that they can live with dignity, in a more natural living situation. This shared living arrangement allows for individualized care and increased support. The Association’s work is a direct reflection of its support for The Arc of Massachusetts. Like The Arc, The Association’s mission is to improve the lives of not only the members in its community with developmental disabilities, but to also educate the community as a whole about how they can better integrate and understand those individuals with developmental disabilities. “We support The Arc because they are so effective as a voice for people with developmental disabilities and their families,” said Barbara Pilarcik, Executive Director for The Association. “They have a long history of successful passage of important legislation in Massachusetts, such as the recent autism bill that has enabled thousands of adults with autism to finally receive community based services.” Additionally, Pilarcik said that The Association has always supported the movements headed by The Arc. In the past, it has participated in a national data project started by The Arc to help set up public policy around health care for people with developmental disabilities. The Arc shares the same pioneering spirit as The Association, as The Arc also fought for alternatives to institutionalization. “They were one of the primary voices around closure of the institutions and filed as one of the original members on behalf of the plaintiffs,” Pilarcik added. “They support families with eloquence and without hesitation. In short, they get it done.” How Special Needs Trusts help people with disabilities By the Planned Lifetime Assistance Network of Massachusetts and Rhode Island, Inc.* Planning for the future can be particularly difficult for families caring for young or adult children with disabilities. The extra time, energy, and costs involved can leave caregivers emotionally, physically, and financially depleted. As a result, arranging for future care often takes a back seat to meeting day-to-day needs. Also, many families are unaware that traditional methods of providing for the next generation don’t adequately serve a person with a disability. For example, an inheritance of as little as $2,000 from a life insurance policy or other means can jeopardize eligibility for public benefits, like Medicaid and Supplemental Security Income (SSI). Achieve with us. Protecting Benefits and Preserving Assets To protect access to public benefits and to preserve assets, families caring for people with disabilities can establish a special needs trust. A special needs trust is a legal document that enables money to be set aside for a person with a disability. It can play an important role in helping plan for a person’s future. Money in a special needs trust is not counted toward assets that can jeopardize a person’s access to public benefits. It allows a family to set aside money for a loved one, while protecting his access to public benefits. The money in a special needs trust can be used to pay for necessities not covered by public benefits, such as medical and dental care, companion and other social services, and clothing. It also can be used for many other purchases that enrich a person’s life. These include transportation to visit others, movies and other entertainment, and electronics such as computers and tablets. These categories are just examples, and are not a complete list. People with a wide variety of physical and mental conditions may be eligible to have a special needs trust. These include loss of vision, spinal cord injuries, autism spectrum disorder, Down syndrome, and mental health challenges. Other conditions also qualify. continued on page 20 19 How Special Needs Trusts help people with disabilities contd from p. 19 Funding Special Needs Trusts balance of $500,000. Special needs trusts may be created for a person with a disability by family or friends. This type of trust is known as a “third-party trust.” It’s important to know that relatives or friends can contribute to the trust now or even in the future, by leaving funds to the trust through an inheritance or a life insurance policy. Another option is a “pooled” special needs trust. Pooled trusts are offered by nonprofit organizations. The funds are “pooled” for investment purposes only. Each participant has his own separate account. Pooling the funds for investment helps reduce each participant’s administrative costs and overhead, because the fees are shared by all of the trust accounts. Special needs trusts also may be set up by a person with a disability using her own money. Trusts set up this way are called “first-party trusts” or “self-settled trusts.” For a minor, first-party trusts may be created by a parent, grandparent, legal guardian, or the court. The money might come from an inheritance or an award from a lawsuit. Individual or Pooled Trust Third- and first-party trusts may be set up individually, with the help of an attorney. These individual trusts typically require a minimum A carefully planned special needs trust is a critical tool to enable people with disabilities to enjoy activities, services and goods that would not be covered by their public benefits, and to live as well and as independently as possible, now and in the future. Planned Lifetime Assistance Network of Massachusetts and Rhode Island, Inc. (PLAN of MA and RI) The oldest and largest special needs pooled trust in Massachusetts is Dillon Chevrolet Donates Van contd from p. 17 Services, Brian Ross. The van supports The United Arc’s Community Service Program, which facilitates community participation for adults with intellectual and developmental disabilities. Tom first connected with The United Arc through former executive director Ed Porter, who was a customer at Dillon Chevrolet. Ed approached Tom for help putting vans in The United Arc’s fleet of vehicles. Tom, who has been a 20 member The United Arc’s Board of Directors since 2012, says that it has been “a great experience” and that he wants to help in any way he can. Dillon Chevrolet was established by Tom’s father in 1961. Tom appreciates the community supporting their business, the only local, family-run dealership in the area. “It is very important that we support the community that supports us.” In addition to supporting The Planned Lifetime Assistance Network of MA and RI, which serves more than 800 people who have a wide variety of abilities and challenges. Executive director Pamela Tames says, “Trust participants and their families depend upon us to administer their trust accounts and to disburse their funds with ease, integrity and reliability. Our staff and board are compassionate, dedicated and experienced professionals who help participants access their funds to live well.” *PLAN of MA and RI is a nonprofit organization that proudly serves people with disabilities throughout Massachusetts and Rhode Island. Since 1995, PLAN’s team of licensed social workers, attorneys, and financial experts has overseen two pooled special needs trusts that have served thousands of people with disabilities. For more information, please visit PLAN at www.planofma-ri.org or call 617-244-5552. United Arc with the van donation and the Adopt-A-Family program, during the holidays, Dillon Chevrolet also supports Toys for Tots and Warm the Children. Brian Ross, Director of Adult Services for The United Arc says, “The vehicle donated by Dillon Chevrolet is deeply appreciated as it takes into account the mobility and safety needs of the people that we serve. This van allows our clients to go on more group outings with friends and to be more active in their community. We all really appreciate the generosity of Dillon Chevrolet!” The Arc of Massachusetts Education and Training Upcoming Webinars To register, visit our website at thearcofmass.org/programs/webinars. The fee for attending a live webinar is $25. If you need financial assistance to attend, please contact Kerry at [email protected]. February 23, 2016, 12:00-1:00 pm everyone strives to utilize PBS in every aspect of their interactions with others. Webinar participants will take away from this presentation tools that they can begin to use immediately with the individuals they support, with their coworkers, with family and with others. Are you confused about State Subsidized Health Insurance Options? Presented by Bob Harris, PhD. Bob is currently the Beth Baker, Director Health Access & Wellness Services, Boston Public Health Commission, will present an overview of the current plans available, including Mass Health and affordable options through the Connector. The presentation will include information about Eligibility, Application Process, Benefits and Services and where to find help with the process! March 8, 2016, 7:00-8:00 pm Pooled Trusts Don’t have a trustee for your son or daughter? Pooled Trusts can protect and administer funds for individuals with disabilities. They offer the benefit of financial management from qualified agencies that have an expertise in serving individuals with special needs. Learn how they work, what they provide and how to access Presented by Michael Andrade and Jennifer Sweet, The Arc of Bristol County, and Maryann Hyatt, Berkshire County Arc April 12, 2016 7:00-8:00 pm Positive Behavior Supports in Action Positive Behavior Supports (PBS) In Action provides staff with positive principles, guidelines and strategies to use when supporting individuals. The primary focus of the PBS Webinar is an emphasis on the five universal principles; non-contingent, positive caring relationships, structure and planning, positive contingencies, choices, and positive language including positive behavioral expectations. When families, programs and agencies embrace this PBS approach and strive to practice the principles consistently, it transforms the environment into a culture where Achieve with us. Clinical Director and Director of Residential Services for Minute Man Arc in Concord Transition Webinar Series The Arc will also be offering 6 webinars on the most popular topics from our Transition Conference this past October. Here is a sneak preview – more to come! March 29, 2016, 7:00-8:00 pm An Overview of Basic Government Benefits What are the federal and state benefits that adults with disabilities may receive? Learn the differences between SSI and SSDI and more! Presented by Attorney Frederick Misilo, Group Chairperson, Special Needs Practice, Fletcher Tilton. April 26, 2016, 7:00 -8:00 pm Autonomy, Decision Making Supports, and Guardianship What are the options? How do you evaluate the support your child may need as they enter adulthood? Presented by Attorney Frederick Misilo, Group Chairperson, Special Needs Practice, Fletcher Tilton. Governor allocates $5 Million continued from p. 1 adults but the shortfall will delay employment. Over 800 students will graduate this year and need assistance during 2017. The Arc and partners hope to work with the legislature to assure that no one is left behind in transition. 21 News from the chapters of The Arc The Arc of South Norfolk joins Massport’s Operation Ready Drill By Betsy Roche, The Arc of South Norfolk boarded on a plane as part of the drill on that cold and rainy morning, including 18 participants, 9 of whom were diagnosed with Autism and other related developmental disabilities from The Arc of South Norfolk Volunteers from The Arc of South Norfolk disembark from the airplane Through the ALEC (Autism & Law Enforcement Education Coalition) Program, The Arc of South Norfolk has had a long-standing relationship with Massport. Under the coordination of Bill Cannata, ALEC has been hosting trainings for Logan Airport personnel and First Response agencies for the past three years. The training entails an overview of Autism, including characteristics and mannerisms, safety risks and concerns for people with Autism at the airport, as well as emergency intervention strategies specific to First Responders. In the early morning hours of Friday, October 2, 2015, The Arc of South Norfolk brought a team of participants and staff to Logan Airport to volunteer in The Massport 2015 Operation Ready Drill. Massport Fire Department Chief, Robert Donahue, wanted First Responders to be prepared for the evacuation of passengers diagnosed with Autism and related developmental disabilities, so he reached out to Bill to ask for our involvement. The 2015 Operation Ready Drill was a reenactment of the 2013 Asiana Airlines crash that took place in San Francisco. Over 180 passengers were The drill was a success, and our volunteers got the experience of a lifetime! They got to see what it would be like to exit a plane in the event of an emergency, go through the triage process of emergency medical care and evaluation, as well as be a part of an important educational exercise for local First Responders. The First Responders on the scene also received the invaluable experience of what it would be like to care for people with developmental disabilities in a crisis situation and learned a lot about changing their approach to best meet the needs of passengers with disabilities. After the drill was complete, Massport Fire gave The Arc of South Norfolk volunteers a tour of their Fire House and everyone left with a tee shirt for their participation. We are grateful for the commitment Massport and Logan Airport have made to ensure the safety and inclusion of people diagnosed with developmental disabilities and Autism. The Arc of Massachusetts now has a Post Office Box! Because we are moving to temporary office space while our present building is being demolished and a new one built, we have arranged for a Post Office Box that you can already use. Here it is: The Arc of Massachusetts, P. O. Box 541603, Waltham, MA 02454 We expect to move around March 1.Our office at 217 South Street, Waltham, MA 02453 will remain open until then and we will continue to receive mail at this address. After that, mail will be forwarded from the street address to our new P. O. Box. 22 The Arc of Massachusetts News from the chapters of The Arc David’s new home care providers, setting up per diem workers, organizing a move-in date, contacting the SSA, moving in, and celebrating. David enjoys a visit from family members “Money Follows the Person” (MFP) is a federal demonstration project that assists elders and people with disabilities who want to move from facility-based care to a communityliving situation. The program provides for a large array of services from case management to home modifications, all designed to allow people to transition from long-stay hospital settings to the community. The Arc of Opportunity in North Central Massachusetts has been successful in moving people out of nursing homes into the community. We are not going to kid you: it is a lot of work. There is a long list of stakeholders in every case referred to us: the individual, family members, nurses and therapists, doctors, case managers, home care providers, state agencies, case nurses, etc. Often, each case comes with a long list of things that need to be done, e.g., locating a home care provider in a desirable area, certifying the home care provider, negotiating for any needed home modifications, transition meetings, locating community health Achieve with us. family in a way unencumbered by regulations and rules. David invites his grandchildren to his home. David describes the visits from his family as “more comfortable” than when he was in the nursing home. “My girls visit me in my home; it feels a lot better,” David said. Sitting with “Living in his new home has afDavid in his new forded David not only an increased home that he level of choice but also he has reshares with his Home Care Progained his dignity; a nursing home vider, Matthew, it is all worth every cannot do that by the very nature second spent to make it happen. of their supports,” explains Kathy David recently experienced the Kopitsky, Division Director for AFC Christmas holiday for the first time and Shared Homes. in several years at home instead of in a nursing facilLURIE INSTITUTE FOR DISABILITY POLICY ity. The look on his face is approachHelp Make Health Care Better for Mothers with Intellectual & Developmental Disabilities ing joy. David has been living with Matthew for several months. In that time he has watched the home gain the physical modifications needed to assist his mobility, he has been on a vacation, he has found new doctors, he is getting stronger every day, and his mobility issues are becoming less and less. David has also been able to connect with his Sometimes self-advocates aren’t treated the same at the doctor, especially if they are pregnant. We want to make health care better for mothers with intellectual and developmental disabilities. We need help from self-advocates who are mothers. If you are a self-advocate and a mother, we want to talk to you! ! We would ask you questions about what it was like when you were pregnant and had your baby. ! It takes about an hour to be interviewed. ! We would come to you. ! You would get $50 as a thank you. ! Your baby needs to be younger than 1 year old. ! Remember, it’s ALWAYS your choice to be involved in research. You don’t have to do it. Want to share your story? Want to learn more? Call: (781) 736-3843 Website: https://lurie.brandeis.edu 23 News from the chapters of The Arc Meet Dylan Salmon By Brenda Linden, The Arc of the South Shore ness to learn has been incredible.” Dylan Salmon Dylan Salmon is a charming, delightful, and funny young man who just started a new chapter in his life: high school. When Dylan was five months old he suffered from shaken baby syndrome. Now that he is a young man he needs full care; he is visually impaired, has cerebral palsy, requires a wheelchair, has academic special needs and has hand splints. But despite everything going against him, he continues to be a funny and loving high school kid. Dylan was eight years old when his now-foster mom took him in. Rose Chermosino can only be described as amazing. Over the years she has taken in hundreds of foster kids, many of them with disabilities. “It is just second-nature to me,” Rose said. “With Dylan it was no question, watching him grow and his willing- 24 Dylan started his first year of high school after the middle school program was no longer age appropriate. Dylan has thrived in the new environment, loving interactions with every student. “The school has a great program,” Rose said. “But Dylan’s willingness to learn and try anything he can makes it easy!” Dylan has a Personal Care Attendant (PCA) at home who also goes to school with him every day. She assists with everything from arts --his favorite -- to learning all the new technology. “Dylan has a laptop, cell phone and Ipad,” Rose said. “But his favorite is the Ipad. He loves all music, but especially country music.” While Dylan loves his new place at the high school, he also loves being home and interacting with all the family. Taking in so many foster kids and having kids of her own, Rose has a very big family. “He loves when everyone is home,” Rose said. “He is such an interactive and social kid that the more people the better.” But when Dylan first got to Rose there was one thing she had to do right away, and that was to get him to a feeding specialist to help enhance his diet choices. “He suffered from asthma and fatigue, so my first thought was to double his food intake.” It took time, but after trial and error with different foods Dylan’s asthma subsided and his fatigue was gone. “He grew like crazy!” Rose said. “It was such a change; he finally had stamina and was loving the energy he now had.” Now Dylan loves food, the crunchier the better. “Food is hard for Dylan,” Rose said. “But it has become one of his favorite things. On one of our first trips to the movies, one of my other kids wanted him to try popcorn. That is when his love for crunchy, salty foods began.” Rose explains that since it is hard for Dylan to consume different foods, he will always make a face as though he is not enjoying it. “The lunch staff at school is always worried he isn’t enjoying it,” Rose said. “I had to tell them to not look at his face because he loves to eat and truly is enjoying it.” But Dylan has a great attitude and sense of humor and he is willing to try anything. High school and food aren’t the only things Dylan loves: he also loves adventure. This past year Rose rented a 12-person van to bring some of her kids down to Disney World. “Dylan loved the ride as much if not more than the park itself,” Rose said with a laugh. “He looked out the window, taking everything in with a big smile on his face the entire ride.” While Rose is a strong, independent mother who has caretaking down to a science, she turns to The Arc of the South Shore for guidance. “The Arc has always been so wonderful,” Rose said. “They provide an annual report to discuss his care and are always on top of his development and changes.” As Dylan continues to grow, his continued on page 25 The Arc of Massachusetts News from the chapters of The Arc Attleboro Library and The Arc of Bristol County win joint grant The Attleboro Free Public Library, along with partner agency The Arc of Bristol County, is proud to announce its selection to fund the project “Everyone Explores @ Your Library: Encouraging Inclusive Creative Opportunities for Children of All Abilities” for a “Curiosity Creates” grant through the children’s division of the American Library Association, made possible through a generous donation by Disney. According to the innovative Curiosity Creates website, “The Association for Library Service to Children (ALSC) is thrilled to announce that of over 400 applications received, 79 libraries have been selected to receive up to $7,500 to support creativity programming. We have been amazed by the robust response to Meet Dylan Salmon contd from p. 24 wheelchair and other supplies need to be replaced, and The Arc is always supportive. When Dylan started high school, the morning routine was changed. Dylan gets picked up at 6:10 a.m. every morning, so Rose gets up with him at 4:30 a.m. because his care takes a lot of time. “When Dylan started high school I called The Arc,” Rose said. “I needed help figuring out how much time I would need in the morning, especially with feeding, which is always the slowest.” Dylan has had many different PCAs work with him through the years. Achieve with us. our request for proposals and the range of ideas that were submitted will continue to inform our work.” Library Director Joan PilkingtonSmyth states “The library’s efforts to become a viable, community-based resource for our community is the driving force behind our services. Children’s Services are key to our Library and our community’s future, thus key to our planning as a community institution. We envision a fun, educational, skill-based approach to library services as the way to introduce very young children to literacy development, while enhancing older children’s educational experiences. Our ability to truly meet the needs of Attleboro children will be enhanced by this new partnership with The Arc.” But Rose says it the PCAs who push him that are the best. “Dylan loves one of the PCAs who is ‘very pretty,’” she says. “But she is very taskoriented and pushes him.” But it’s Dylan’s sense of humor that comes through even during challenges. Rose recalls moments when Dylan needs to have his hand splints put on, saying, “Oh no! Can’t I have the day off?” But he always participates, usually with a smile on his face. Rose is very independent -- sometimes too much so, she says. But whenever she has a question she calls The Arc. “They are so accommodating,” she says. “When I have questions about managing my team The Arc of Bristol County’s President and CEO, Michael Andrade, added, “The Arc is delighted to have been invited to collaborate with APL to develop accessible and attractive learning experiences for families affected by Autism. APL wants the entire community to feel welcomed, and The Arc will advise on how to make needed accommodations for people with disabilities.” Coordinated by Amy Rhilinger, Assistant Library Director, the Curiosity Creates grant offers an opportunity for developing programs, training staff, providing an interactive play station, and making the Children’s Room a welcoming experience for our diverse community. Descriptions of activities funded by the grant will be released in early 2016. at home, I call them for advice.” The nurses who come out to the house have loved Dylan and he has always bonded with them. Dylan continues to be an inspiration. A young man with a lot of heart, charisma and a no-quit attitude, he continues to do everything with a smile on his face. “It’s hard but I love it,” Rose said. “It is so wonderful to watch him willing to try and grow to be such an awesome guy.” Although high school is this year’s newest challenge, Dylan continues to look ahead to what he can do next. The next chapter Dylan is going to pursue is the Special Olympics, and there is no doubt he is going to succeed! 25 News from the chapters of The Arc One man’s transition plan: The Doghouse Dog By Bobbi Martino, The Arc of Greater Plymouth John and his Dad with the Doghouse Dogs cart John Shea, who turns 22 in March, 2016, is a young man with physical and visual challenges and many interests and abilities. He loves baseball, motorcycles, hot dogs, McDonalds, cola, beaches, running errands and Jurassic Park. Planning for John’s future, his parents asked themselves how could they make a vocation, a meaningful day, and a future out of this list of interests. When asked, John said he wanted to sell hot dogs at Fenway and ride motorcycles for a living! John uses a walker or wheelchair to ambulate, does not always stay on task, requires assistance with most activities, does not always speak understandably, has transitional anxiety and is legally blind, so they had some “outside the box” thinking to do. John’s dad came up with the idea of a mobile hot dog cart that John could take to events such as base- 26 ball games and motorcycle rallies, to sell hot dogs, chips and cola. A cart for sale was located, but John needed assistance to fund not only the purchase, but seed money for the whole venture. Working with DDS and The Arc of Greater Plymouth Associate Director and Director of Family Support, Malissa Kenney, resources were found to help fund not only the cart purchase, but also other startup expenditures, like marketing and an awning. Using funds from The United Way of Greater Plymouth County Transition grant, The Arc of Greater Plymouth offered to assist with half the cost. Next, his family was encouraged to help John apply for the Kurt Giessler Scholarship, which gives money to help students apply ideas and knowledge to businesses, research, and volunteerism. Although recipients are traditionally accomplished academic scholars, the selection team at the Kurt Giessler Foundation saw the value of John’s plan and decided to fund this unconventional project. John received a grant of $2,000 ! To prepare, John has been practicing at home with tongs, cook- ing hot dogs on a griddle. At the Perkins School, he is participating in job training at the Perks Café on campus. John had his debut at a private party recently and was happy to make hot dogs for his guests – and eat them as well! The public launch has been delayed by a daunting list of licensing permits and state and local training certifications that are required. The Massachusetts Safe Server and Allergen certification courses have been completed and John will have his hot dog cart ready for business in March of 2016. He will be the official hot dog vendor for The Arc of Greater Plymouth Buddyball season this spring and has scheduled several community and private events, including next winter’s Halifax in Lights event. John’s business is called The Doghouse Dog. Watch for him at The Arc’s Trik or Trot Race next October and around the South Shore. He will be the young man with a smile on his face shouting “ Hot dogs! Get your hot dogs here!” John’s dream for the future includes recruiting some friends to work with him in his business venture. We wish him every success! Editor’s Note: This is another in the series “Creating Transition Plans that mean business!” from The Arc of Greater Plymouth. Two other stories appeared in the Fall 2015 issue of Advocate. The Arc of Massachusetts News from the chapters of The Arc Building community with China Interest is stirring from the other side of the world in The Arc’s work; China is looking at CLASS/The Arc of Greater Lawrence. Ms. Lü Fei, the director of the Able Development Institute (ADI) in Beijing, a supportive non-governmental organization (NGO) dedicated to assisting people with disabilities, spent 30 days in the Merrimack Valley, observing several agencies, asking questions and educating everyone in those circles about what life is like in China. For Ms. Lü’s base of operations, The Arc of Massachusetts and the National Committee on United StatesChina Relations (NCUSCR) selected CLASS /The Arc of Greater Lawrence. As a Professional Fellow in the National Committee’s program on NGO capacity building, she went to work daily at CLASS headquarters in Lawrence and met as many people as she could to understand what services our federal and state governments offer. “The visit from Ms.Lü was an honor for CLASS and we are so proud to have been selected by The Arc of Massachusetts and NCUSCR as the agency to show what we do and host her stay,” said CLASS President and CEO Bob Harris. “We embraced the opportunity for her to shadow staff at CLASS and attend meetings with other agencies and nonprofits. We enjoyed sharing insights into how American organizations supporting people with disabilities function on operational and management levels. “This cross-cultural exchange was Achieve with us. a once-in-a-lifetime experience for everybody at CLASS and The Arc of Greater Lawrence,” he said, “and we are grateful The Arc of Massachusetts recommended us as hosts.” During her fellowship placement, Ms. Lü wanted to learn from CLASS innovative ways that people with disabilities become engaged as active members of their communities and land jobs. She and her colleagues work to change attitudes in China and improve awareness and understanding of what people with disabilities are capable of doing, but it’s been challenging. Ms. Lü was particularly interested in how American nonprofits operate and how individuals with disabilities receive direct financial support. “It was difficult for her to grasp how ‘the money follows the person,’” said Robin Ellington, director of marketing at CLASS. “In China, the government funds only some of the NGOs and it’s up to the families and individuals to find the right services, which are not available everywhere. “Lü Fei was a guest in my home for the entire program visit,” she continued. “For communications at work and at home, we relied on an app, SayHi, to hurdle the language barrier and she schooled my family on Chinese culture and Mandarin. She also turned my adult son into a noodle master, which we continue to enjoy and thank her for. She is a joy to be around, extremely charismatic and optimistic.” Lü Fei spent most of her time at CLASS, shadowing Day Hab and Com- Lü Fei, founder of Beijing’s Able Development Institute, presented CLASS CEO Bob Harris with a gift of beaded coasters handmade by people with disabilities living in China. munity Based Day Services programs in Lawrence and Wilmington, but also had meetings set up for her with Leo Sarkissian, Executive Director of The Arc of Massachusetts; the Department of Developmental Services; Massachusetts Rehabilitation Commission; Northeast Independent Living Program; and Fidelity House, at one of their residences in Haverhill. She also visited a CLASS group employment site, Joe Fish restaurant, and met with CLASS individuals working with community partners, including Ironstone Farm Challenge Unlimited horseback riding therapy, Express Yrself art classes, the Andover/North Andover YMCA, and the CLASS Healthy Balance fitness program designed for youth with disabilities at Andover High School, with Merrimack College student volunteers. “She went to work with me every day. I planned out her 30 days and we attended all those meetings together,” Ellington said. “We commuted, worked and went home to dinner every day, everything together, every day, all day. Then all of a sudden the continued on page 29 27 News from the chapters of The Arc Greater Waltham Arc receives grant from Music Drives Us By Leah Igdalsky Music Drives Us recognizes the importance of music as a way to inspire, communicate and connect with others. Tim Cohen, music therapist (right), at a session with GWArc participants Music has always been a strong component of GWArc’s programming and recent music initiatives are allowing us to further develop and expand our music offerings. GWArc was thrilled to receive a $4,800 grant from the Music Drives Us Foundation to expand music activities in our Day Habilitation and Community Based Day Supports programs. These much-appreciated grant funds will be used for ongoing music therapy sessions, as well as to purchase musical instruments and equipment for use during programming. Additionally, James Jones, a musician and educator, is working with a group of GWArc participants to create and record improvisational music, with vocals and instruments, which will be made available on CD. Music Drives Us, part of the Boch Family Foundation, was created by Ernie Boch, Jr. to support music in New England by funding music education programs, musical instruments for schools and music therapy programs. Like GWArc, 28 Music provides joy through creative expression, and can serve as an outlet to redirect attention and alleviate stress. Roz Rubin, Ed.D, Chief Executive Officer of GWArc, described the impact of music on GWArc participants: “Music is the universal way that we can all connect and be successful – you can’t do music ‘wrong’ and the enjoyment, relaxation and communication skills seen during any music activities are visible and beneficial.” Some of the grant funds will support music therapy sessions, an important component of our adult programming. Music therapist Tim Cohen, who visits GWArc twice a month, has designed a curriculum to meet the needs of our participants through a variety of songs, instruments and strategies to reach participants, regardless of their communicative abilities. His goals for music therapy sessions include enhancing group and selfawareness; enhancing self-esteem; stimulating creativity; providing emotional release; and improving memory, speech, coordination and motor skills. The Music Drives Us grant is also helping GWArc to increase music in daily programming, beyond scheduled music therapy sessions. GWArc has converted a room at our Chestnut Street location into a music room. Groups of participants gather throughout the day to sing and play the piano, keyboard, tambourines, xylophone and drums. The music room has also become a gathering place for participants and staff at the end of the day; singing and playing together serves as a period of relaxation before the transition to the next part of the day. Instruments are also used for special events. Prior to the December holidays, participants, staff and Bentley Service-Learning student volunteers gathered outside for a holiday singalong, accompanied by participant Dianne A. on keyboard. A new guitar, keyboard, ukuleles, karaoke machine and microphones at GWArc’s Woodland Road location have allowed staff to arrange frequent music groups, rather than offering only scheduled music sessions. As an additional music initiative, James Jones, a jazz musician and educator, has created a music ensemble at GWArc. Eleven participants from GWArc’s Day Habilitation and CBDS programs gather weekly to rehearse, and will ultimately record their music on CD. “The group is creating improvised music with vocals and instruments,” James said. “Participants are having an ‘improv’ conversation.” Elizabeth K. is one of three participants on vocals. “I really like continued on page 29 The Arc of Massachusetts News from the chapters of The Arc Minute Man Arc opens accessible putting green Minute Man Arc recently celebrated the opening of an accessible putting green. Designed to be accessible for all types of abilities, the putting green consists of six holes -- one “no fail” hole designed to build confidence and five progressively challenging holes. “The accessible putting green project started with a simple idea and snowballed from there, picking up support along the way,” said Jean Goldsberry, CEO. “We are so happy to have this wonderful putting green here at our new location, and we are grateful for all the support from the Rotary Club of Concord, Spaulding Management and local benefactors who made this possible for us.” “The Rotary Club of Concord has enjoyed taking individuals from Minute Man Arc to the driving range and putting green at Stone Meadow Golf in Lexington, but logistically we were unable to serve all adults at one time,” said Sharon Spaulding, President of the Rotary Club of Concord, MA. “Minute Man Arc wanted to build their own accessible putting green at their new location at 35 Forest Ridge Road and the Rotary thought this would be a great project to be involved in. Now with an accessible and ability friendly putting green, complete with benches for onlookers, the Rotary can help Minute Man Arc serve all of its participants.” The project was made possible with support from The Rotary Club of Concord, Spaulding Management, Minute Man Arc program participants, staff and donors test out the new, six-hole, accessible putting green recently built at Minute Man Arc. (L-R) Zoe LoPresti (LoPresti Contracting), Karen Bergen, Christina Kakis, Jean Goldsberry, (Minute Man Arc CEO), Nora McShane, Eric Boroush (Director of Operations), Mary Blauvelt, Sharon Spaulding (President, Rotary Club of Concord) and Josh Weidenhamer (Director of Day Habilitation). Lenox, LoPresti Contracting, Northeast Synthetic Turf Company and private donors. Building community with China Greater Waltham Arc receives grant from Music Drives Us contd from p. 27 contd from p. 28 30 days were up and she was gone. We communicate still by WeChat, but it’s just not the same. She’s an amazing person and I miss her very much.” The NCUSCR is responsible for Chinese and Mongolian fellows’ work in the fields of legal aid, the environment, support for community building among marginalized groups (primarily LGBT people, women, children and youth, and the elderly), and philanthropy in their home countries. The Professional Fellows Program is generously funded by the U.S. Department of State Bureau of Educational and Cultural Affairs. Achieve with us. singing,” Elizabeth said, when explaining what she likes about the music project. “I really like playing an instrument,” Brian D. said, as he played the bongo drums. In February, James will bring in equipment to create a recording studio at GWArc, and will record the ensemble’s music. A percussionist drummer who has worked with many well-known jazz musicians, James is donating his time and recording equipment to capture and mix the music, and will make a CD that GWArc can distribute to GWArc participants, family and friends, and staff members. In addition to his music background, James has past experience as a case worker for individuals with disabilities and has worked with disadvantaged youth and other groups on similar recording projects. He enjoys working with GWArc participants because “their minds are open, they don’t have any inhibitions or restrictions with the music they create.” 29 News from the chapters of The Arc Alexander J. Tymchuck Award to Susan Jones of The United Arc role in developing a network of coalitions for supporting parents with cognitive challenges, which led to the establishment in 2010 of The Association for Successful Parenting. Over the past 20 years she has organized conferences and training workshops, bringing together parents and professionals concerned about parenting supports. She has conducted trainings throughout the Commonwealth and in other states and is currently consulting with the Massachusetts Department of Children and Families. (L-R) Susan Jones received the Alexander J. Tymchuk Leadership Award, Denice Mock of Illinois received an award as Emerging Leader, and Lindsay Brillhart of Ohio received an award for Parent Advocacy. At the 2015 International Conference of The Association for Successful Parenting, held in Memphis, TN this past October, Susan Jones, Director of Positive Parenting at The United Arc received the 2015 Alexander J. Tymchuk Leadership Award for her significant contributions to the field of supported parenting. Susan founded and directs The United Arc’s Positive Parenting Resource Center, which was cited in 2012 by the National Council on Disability as one of the nation’s promising practice programs which prevent unnecessary removal and loss of children. This award also recognizes Susan’s leadership 30 Tymchuk Awards are presented annually by The Association for Successful Parenting (TASP) to honor the work of Dr. Alexander J. Tymchuk, Emeritus Professor of Psychiatry, UCLA School of Medicine, considered by many to be the “father of the supported parenting movement.” Dr. Tymchuk pioneered work in the field of supporting parents with intellectual disabilities and his work has provided a solid foundation for both researchers and practitioners who work with parents and families. These awards honor his legacy and recognize individuals who have demonstrated excellence in supporting parents with intellectual and other learning disabilities. In her speech accepting the award, Susan said that Dr. Tymchuk’s work “has been inspirational in my own case work and that of our program, The Positive Parenting Resource Center. When I started in this field 30 years ago, his work was one of the very few resources available for those working with our families.” Susan Jones has been with The United Arc since 1985 and spearheaded work to support parents with intellectual disabilities, developing a program that initially served a small handful of parents who were experiencing termination of their parental rights to one that works with more than 100 families annually throughout western Massachusetts, helping parents and children remain together in stable households. The United Arc’s Positive Parenting Program provides support to parents and their families through an array of services including individual case management and parent skills training, parent education and support groups, transitional living for families to achieve successful reunification, mentoring support from volunteers, and supervised visitation which brings together parents with children who are still in placement. Among Sue’s recent accomplishments was overseeing the opening of The United Arc’s new Positive Parenting Resource Center in Holyoke, MA, which will help the program better serve families in Hampden and Hampshire Counties. The Arc of Massachusetts News from the chapters of The Arc The United Arc opens new Positive Parenting Resource Center in Holyoke On Friday November 20th, The United Arc held a Grand Opening event at their new Positive Parenting Resource Center located at 208 Race Street, Suite 2, Holyoke, MA. The United Arc provides services to families through The Positive Parenting Resource Center in Hampshire and Franklin Counties, and is excited to have this new location in Hampden County. The Positive Parenting Resource Center provides parenting training and skill development for parents with learning differences and also offers supervised visitation services. Attendees at the Grand Opening event included Holyoke Mayor Alex Morse, State Representative Aaron Vega, and Holyoke Chamber of Commerce Executive Director Kathleen Anderson. Also present was John Moriarty, Aide to Massachusetts State Senator Donald F. Humason. Representatives from community service organizations and businesses from the area included Easthampton Savings Bank, Human Resources Unlimited, Multicultural Community Services of the Pioneer Valley, and ServiceNet, among others. Welcoming remarks were given by Representative Aaron Vega, Holyoke Mayor Alex Morse, Positive Parenting Program Director Susan Jones, and The United Arc Executive Director Lynne Bielecki. The Grand Opening ceremonial ribbon was cut by Barbara Morrell, President of The United Arc Board of Directors, and Betsy Misch, Positive Parenting Coordinator for the Holyoke Positive Parenting Resource Center, with assistance from Mayor Morse and Representative Vega. Jo Ann Simons named CEO of Northeast Arc Northeast Arc for Simons, who early in her career served as the organization’s Director of the Community Division and Director of Family Educational Services. During this time, Simons started the first Family Support Program in the state and one of the first in the country. The Northeast Arc has named Jo Ann Simons, MSW, as its Chief Executive Officer. Simons began her new role on January 4th. Simons, who lives in Swampscott, comes to the Northeast Arc from Cardinal Cushing Centers, where she has served as President & CEO since 2008. This is a return to the Achieve with us. Simons has had a successful career working with a variety of agencies focused on serving people with developmental disabilities. After her first stint at the Northeast Arc, Simons went on to serve as the Director of Policy for the Massachusetts Department of Developmental Services, The Deputy Facility Director of the Fernald Development Center, and Executive Director of The Arc of East Middlesex before leading Cardinal Cushing Centers in their master plan to create intergenerational communities on both the Hanover and Braintree campuses. “Finding the next CEO to lead the Northeast Arc was a critical priority for the board of directors, staff, and individuals and families we serve,” said Don Fournier, President of the Board. “Jo Ann has had a highlyregarded career leading non-profits dedicated to supporting people with disabilities and we are thrilled that she has accepted our invitation to be part of shaping the future of Northeast Arc,” said Fournier. Simons currently serves as the disability advisor to the Ruderman Family Foundation and as a Trustee of LIFE, Inc. of Cape Cod. She is a continued on page 32 31 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. Jo Ann Simons named CEO of Northeast Arc contd from p. 31 past chair of the National Down Syndrome Society, past president of the National Down Syndrome Congress, and a consultant to Special Olympics. Simons is the author of the Down Syndrome Transition Handbook, and Footprints for the Future. She also contributed chapters to the books, Babies with Down Syndrome and Treating the Dental Patient with a Developmental Disorder. She was on the Governor’s Transition Committee on Health Care and has been appointed to the Governor’s Commission on People with Developmental and Intellectual Disabilities by Governor Charlie Baker. “This is a great opportunity for me to return to an extraordinary organization where I worked in the early part of my professional and personal journey,” said Jo Ann Simons. “The Northeast Arc has grown to 32 become the second largest Arc in the country and I look forward to helping build on the incredible accomplishments they have made over the last 61 years.” Simons has two adult children: Jonathan, who has Down syndrome and lives independently in his own home and has a life filled with meaningful paid work, important volunteer activities, and many leisure pursuits; Emily is a litigator with Ropes and Gray. Simons received her Bachelor of Arts degree in Urban Studies from Wheaton College and a Masters of Social Work degree in Policy, Planning, and Community Organization from the University of Connecticut. Simons succeeds Jerry McCarthy, who retired at the end of 2015 as CEO after thirty-six years in the role. List of Advertisers The Arc of South Norfolk The Arc of the South Shore Berkshire County Arc Cardinal Cushing Centers Cotting School FletcherTilton PC The Guild for Human Services PLAN of Massachusetts and Rhode Island Riverbrook Special Needs Financial Planning Specialized Housing SUPPORTbrokers Our advertisers help support the mission of The Arc of Massachusetts. The Arc of Massachusetts