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My Life Now November 2016 DEBBIE DAVID ROY GARY ANITA ADAM My Life Now | My Life Now Featured Stories Page Community Living Education Project http://sph.rutgers.edu/service/CLEP Information about CLEP 3 [email protected] Project Director Letter from the Director 4 David Wright, PhD, MS Principal Investigator 5 Bernadette West, PhD, MA Letter from the Assistant Commissioner of the NJDHS Co-Principal Investigator 6 Susan Hammerman, PhD, MA Adam’s Story...Community Connections over a Lifetime! Training and Consultation Specialist Fighting the Good Fight 11 Natalie Trump, BS Training Specialist ‘A Different Way of Life’ 14 Sheilah Garry ‘My Pad I Love This Place’ - A 16 Training Specialist Waiting List Story Ann Martinelli, MADS Gary’s Life is Not a Sprint, It’s a 23 Communications Manager Marathon Antoinette S. Johnson, MAED Self-Advocacy Leads to a Great 27 Student Assistant Life Ernestina Pelaez CLEP is funded by a grant provided by the New Jersey State Department of Human Services Division of Developmental Disabilities “Educating families and staff about the possibilities in community living!” 2 | November 2016 Information about the Community Living Education Project The Rutgers School of Public Health Community Living Education Project (CLEP) is supported by the NJ Division of Developmental Disabilities (DDD), as a part of the NJ Olmstead Plan, to orient people with developmental/intellectual disabilities and their families to the potentials of community living. CLEP Learning Events offer families and staff members’ pictures of community living via My Life Now Alumni Events. The purpose of the event is to celebrate and share the life story of a former Developmental Center (DC) resident to acknowledge DC staff who assisted in the transition of a former resident. The individual, family and agency staff talk about the challenges, successes and how supports are provided in the community today! CLEP coordinates and facilitates Self-Advocacy Community Living Events (SACLEs) at developmental centers in collaboration with Community Access Unlimited (CAU). Self-Advocates from CAU provide peer-to-peer support and mentoring for individuals who are ready to move. The New Beginnings in Community Living bi-annual newsletter features a “Spotlight Story” about current events in developmental disabilities, news and information about CLEP learning events, and a feature column entitled, Living in the Moment. Community Living: Explore the Possibilities guide provides information for family members who are considering moving their loved one to the community from a developmental center. The guide includes information about housing options, support staff, aging in place, emergencies, medical information, activities for individuals, and quality assurance measures. My Life Now magazine features stories about individuals who have transitioned from a developmental center to the community. Also, included are stories of people living in community settings under the Self-Direction initiative. Community Living: Envision the Possibilities DVD provides stories about individuals who are living in the community. The participants provide candid information regarding their daily activities and what their life is like in the community. The DVD can be viewed at the following website address: http://www.youtube.com/watch?v=HAd2Oa- 9ORU Our Life Now video shares the transition stories of individuals with developmental disabilities. It highlights the experience of their families in participating in the transition process and presents how people with developmental disabilities can successfully live in community settings. Apartment, Townhome, Condominium Living guide provides information on non-traditional living settings and the support services that individuals who live in the community utilize. The guide explains the staffing, daily activities, medical supports, quality assurance and oversight provided for those living in apartment type settings.. Mini-Updates eNewsletter provides a snippet of a previous CLEP story and events taking place throughout the country. Webinar — CLEP conducted a webinar entitled: "An Overview of Community Living for People with Developmental Disabilities in NJ". It can be viewed at the following website address: http://web.sph.rutgers.edu/linkweb/resources/ links.html Family to Family Advisory Group are family members who have successfully transitioned their loved one from a DC or from the family home to a home in the community. They assist CLEP with developing methods to increase informed decision-making for family members, and they help support and mentor family members regarding community living. The CLEP website, http://sph.rutgers.edu/service/CLEP, provides access to all project publications and links to community information and resources related to Olmstead. The CLEP Toll-Free Number is 800-500-0448. CLEP’s email address is: [email protected]. CLEP is on Facebook! To view our page you can go to www.facebook.com/ SPHCLEP. My Life Now | 3 Letter from the Director Community Living Education Project sph.rutgers.edu/service/CLEP School of Public Health [email protected] Rutgers, The State University of New Jersey 335 George St., Liberty Plaza, Suite 2200 p. 800-500-0448; 732-235-3277 New Brunswick, NJ 08901 f. 732-235-5434 November 2016 Greetings, My Life Now is a magazine that tells the stories of people with developmental disabilities who are successfully living in community settings. The Community Living Education Project (CLEP) is committed to sharing the journeys of individuals and their families as they experience life in their homes. We are thrilled to bring to you our eighth edition of My Life Now. In this edition, we feature six intriguing stories. These stories reflect some of the varied living arrangements, an array of personalized supports, and the individualized activities that are possible for people with disabilities living in New Jersey. They chronicle the efforts of families and friends, community agencies, and the NJ Division of Developmental Disabilities to not only support people in being healthy and safe but to support the pursuit of their dreams. After reading these stories, it is our hope that you would be encouraged to further explore the possibilities of community living. The CLEP Team would like to acknowledge and thank the people who allowed us into their lives and permitted us to share their stories with all of you. Please enjoy this issue of My Life Now. Sincerely, David Wright, PhD, MS Project Director 4 | November 2016 Letter from the Assistant Commissioner of the New Jersey Department Human Services STATE OF NEW JERSEY CHRIS CHRISTIE DEPARTMENT OF HUMAN SERVICES Elizabeth Connolly GOVERNOR Acting Commissioner DIVISION OF DEVELOPMENTAL DISABILITIES KIM GUADAGNO Elizabeth M. Shea LT. GOVERNOR PO BOX 726 Assistant Commissioner TRENTON, NJ 08625-0726 609.631.2200 www.nj.gov/humanservices/ddd November 2016 Dear Friends and Colleagues, With each issue of My Life Now, we have the opportunity to read about some of the many individuals with developmental disabilities whose lives have been enriched by moving into community homes and becoming a part of the communities in which they now live. In this issue, we meet people who have transitioned from developmental centers, nursing homes and even their own family’s homes to start a remarkable new chapter in their lives. These poignant stories and photos allow us to follow the individual journeys ‘home’ of six individuals with very different needs and backgrounds. With each narrative, we get a sense of the person’s personality, motivation and will, as well as the character of those that have stood by their side, including: family members and friends; providers of their services; and, the Community Living Education Project at Rutgers University School of Public Health, which helps individuals and families understand and connect with community living opportunities. Thank you to the women and men in this issue that have shared their stories and who have shown us what is possible; and special thanks to all who have provided assistance in supporting individuals with developmental disabilities in achieving their personal success. Sincerely, Liz Shea Elizabeth M. Shea Assistant Commissioner My Life Now | 5 New Jersey is an Equal Opportunity Employer Adam’s Story…Community Connections Over a Lifetime! By Natalie Trump donated land from Hanover Township that was leased to The Arc/Morris. The Arc/ Adam and his parents Tony and Marilyn Morris used county and municipal funds to assist in building Adam’s home. Bill stated, “Since 1984, Hanover Township and The Arc/Morris built a great relationship and partnership around community inclusion.” The early years…Adam was born in Brooklyn, New York and is one of three children; he has an older sister, Michele, and a younger brother, Evan. The family moved to New Jersey when Adam was nine months old. Adam began attending early intervention services and therapy provided by Easter Seals in Morris Plains. Marilyn and Tony came to The Arc/ Morris via the Division of Developmental Disabilities (DDD). Adam also attended the Regional Day School in Morris County, which was overseen by Parsippany Board of Education, until he was 21. From an early age, Adam and his family were very thankful and involved with The Arc/Morris and developed a close relationship. Adam attended their after school Adam came outside his home to meet and respite program when it was needed. us as we arrived. He was expecting us! With a Marilyn stated, “I was so amazed; The Arc/ big smile and a hug, Adam greeted, Bill Testa, Morris was a godsend for us and we needed executive director of The Arc/Morris, his dad their help so desperately. All of our family had Tony and me. Soon after we arrived, so did his lived in Brooklyn and we needed the support mom Marilyn and my colleague Antoinette here.” Johnson. Adam is a delight to be around, full Before Adam aged out of the education of energy and has a great spirit! system (high school), his parents were Adam’s home was built in 2002 on concerned he would not have services after graduation.
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