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. Marilyn stated, “We were beside 6 | November 2016 ourselves that Adam would be sitting at home on the couch. All the years he was involved in make a change; it took three more years for the many programs at school and at The Arc/ the change to happen. “We didn’t want Adam Morris, I wanted to make sure Adam didn’t go torn away from the community he has known from lots of activities to having nothing. We all of his life. So we decided to build a home wanted Adam to go into an Arc/Morris home for Adam and five other gentlemen who were because of the continuity, and to move into a also on DDD’s waiting list,” said Bill. These home as soon as possible.” families knew each other through The Arc/ In 1993, the family began a letter writing Morris. The gentlemen had varying degrees of campaign for day services and they asked all developmental disabilities and had always their friends, relatives and other families (over hoped they could live together one day, in the 100 people involved) to write letters. The same home. family was told that there was no place for Since age 21, Adam has always said that Adam, and he wasn’t eligible for placement at he “goes to work” at The Arc/Morris Hanover that time because there were many people on day program. He loves going there, and has the waiting list for day program services made many friends at the program. Gail before him. Paradise, assistant executive director of The The family began lobbying (six months Arc/Morris explained that the day program in prior to Adam graduating high school) the Hanover is one of six programs across the Department of Human Services, all legislators, County. Their programs are located in the governor of NJ, and the president of the Hanover, Flanders and Dover. The Arc/Morris United States. “There was a swell of people serves 150 people residentially and over 200 looking for services back then, which started plus people in their day programs. the whole thing,” said Bill. Marilyn Marilyn went to the home every day mentioned, “It was a mass mailings campaign. When Adam graduated in 1993 from high school on a Friday, on Monday he went to The Arc/ Bill Testa from The Arc/Morris Morris Hanover day program, and he’s still in that program today.” Adam was very well known by everyone at The Arc/Morris. The Arc/Morris has become part of Adam’s family. Adam’s parents researched funding options for Adam to live in a group home. Marilyn stated, “We needed to have a life for Adam and a life for us. We wanted him to have his own life separate and independent. We felt The Arc/ Morris was the best place for Adam and agreed he had to stay with all the friends he made over the many years, as well as staying with all his doctors.” During the time Adam was on the waiting list for residential services, he would go to The Arc/Morris respite group home for one to two weeks, twice a year. Change and challenges… Marilyn became ill and the family needed to My Life Now | 7 during construction. The township was Adam into an uncomfortable situation. It concerned about the people coming to the became a challenge for the Arc and the family neighborhood. Marilyn said, “The neighbors but a solution was found when it was kept referring to our loved ones as ‘patients’ suggested they cut back on their visits for a instead of ‘people.’” Some of the neighbors short period of time. The family agreed. didn’t want the house built and Marilyn Marilyn stated, “The Arc helped us through decided to educate them. She and the other this. It was harder for us to manage Adam at gentlemen’s families, along with The Arc/ home, as well as his expectations. There were Morris attended several town hall meetings. bumps in the road and The Arc gave us help The neighbors said they were concerned for and came to the rescue!” the “patients” because the home was near How they managed…The Arc staff and Route 287. Their home was the only home in behaviorist discussed how to best support the neighborhood that had to undergo a noise Adam through the situation. Through DDD, study to determine if the residents would be they were introduced to a psychologist who disruptive to the neighborhood. Neighbors worked at the Developmental Disabilities questioned the building of the home and how it would mesh with the Mignolia Ortega and Princess Zubah from The community. “They Arc/Morris were afraid,” said Marilyn. Marilyn continued and mentioned to them that the gentlemen’s home “…is a home, and they are a family.” The Arc/Morris held meetings to introduce the families and the six men who were going to be residents in the home. They understood the home would not work unless the people who would live together first knew one Clinic at Morristown Memorial Hospital. The another. “This put our minds at ease 110%,” psychologist worked with Adam twenty-five Marilyn said. Bill stated, “The reality is they years earlier at one of the Arc/Morris respite [Adam and his housemates] became a close- homes and at this time, worked with him knit family, they all had similar issues.” The several times a week with the assistance of his men did not all move in at the same time. family and staff. They moved in one at a time so that staff Suggestions included taking Adam home would get to know each person individually. on different days so that a routine was not They now have lived together for 14 years. established for visits. This would foster Adam thought he was on a respite from Adam’s understanding of his home versus his September to December, and then suddenly parents’ home. During the Christmas holiday, Adam wanted to go home. His parents had they realized Adam understood the difference been taking him several times a week from between “his home” and his parents’ home. He the group home to the family home for visits. spent Christmas with the family and when his Adam’s dad, Tony, recognized his Dad asked him if he wanted to leave some of unhappiness and believed that he had put his gifts there, Adam said “No, I’m bringing them back to my home.” Tony shared that he 8 | November 2016 had tears in his eyes because Adam finally
made the transition. have a special relationship and the house “The people in his house are his family and staff assist with helping Adam and Bonnie the staff has become his family,” said Marilyn. see one another. Princess Zubah, assistant group home manager, In May 2014, Bonnie was hospitalized. said she “...loves working with Adam” because She knew that Adam was going to receive he pushes himself and everyday he does his best. the Bill Sackter Award from The Arc/Morris Mignolia Ortega, group home manager, said at their annual awards ceremony. The day “The family...is at ease because they know before the award ceremony, Bonnie was Adam is well cared for. They are a very caring released from the hospital. It was important family.” Adam’s 44th birthday party was to Bonnie to be at the ceremony and staff celebrated at his home with family, friends and arranged for her to be there with Adam. On Adam’s girlfriend, Bonnie. May 21, 2014 Adam received the Arc/ Yet another challenge, Adam’s community Morris Bill Sackter Award for his tenacity comes together…Adam became ill four years and ability to persevere through difficulty. ago with a benign brain tumor. He had surgery Bonnie and Adam held hands during the to remove it and there were complications. He ceremony. It was an emotional night for the was hospitalized for four months, three of which family to witness such an amazing moment he was in intensive care. The Arc staff and the in Adam’s life. Adam not only received the guys (his housemates) called him on the phone award from The Arc/Morris, (local chapter), and visited him often. Adam’s girlfriend Bonnie, he went on to win the Bill Sackter Award who attends the Arc day program with him, was from the Arc of New Jersey at the state level distraught about Adam being in the hospital. on October 24, 2014. At the state awards Marilyn convinced the hospital security guards ceremony, Adam was joined by his whole to let Bonnie visit Adam since she would be family, including his immediate family and there to support her. When Adam was released, the gentlemen he shares his home with who Bonnie called Adam to encourage him to come back to the day program. Bonnie and Adam My Life Now | 9
are like brothers to him. In addition, cherished friends and The Arc/Morris team joined Adam at this special ceremony. For more information about Bill Sackter, please go to www.billsackter.com. Advice to Families regarding transition…“You’re not giving your child up. Your child will grow. To not allow your child to do so is a travesty. You need to know the benefits from living in their own home. Do it before you are not here. I wanted Adam to have as enriched a life as he could, to live independently and feel secure. I believe Adam is loved by the people in the home. Your child needs your support and advocacy. You want to be there to transition your child and advocate for their goals,” said Marilyn. Tony spoke about the importance of letting go to allow your child to “reach their maximum independence.” Both the family and The Arc have been on the same page throughout the years. According to Bill, “I’ve been with The Arc 34 years. The presence of family involvement is essential. We work very closely with families in serving their loved ones, in advocacy – in most of what we do. Honesty is incredibly important. At The Arc/Morris we provide day program, respite and residential services in group homes or apartments – a wide range of options. This is an effective model when done well. We will not compromise what we do for the sake of development. We believe in quality and we work hard to sustain quality. If we weren’t able to serve Adam residentially we would have been heartbroken. We love the people we serve and our work really is not a job, but a calling!” The Arc/Morris sustains community connections with people…with Adam with his family! The parents’ hopes and dreams for Adam’s future are for him to live as full a life as possible with The Arc/Morris supporting him. “There is a lot of stress off us. We feel secure that Adam is happy. It gives us comfort and it’s the way it’s supposed to be,” said Marilyn. One more thing that they hope is for “Adam to remain in his home and to keep the connections and friendships he’s made over the years in his community!”
10 | November 2016 Fighting the Good Fight: An Advocate Fights for Her Rights and the Rights of Others By Antoinette S. Johnson Early Life as an Advocate Anita began advocating for herself when she met Krystal Odell, CEO/president of PennReach, Inc. Krystal worked with Anita as Anita fought to get the Chuck Costello apartment complex built. Anita went to a special meeting and made a speech to advocate for that apartment complex to be built, which would include space for individuals with disabilities. Her successful advocacy helped her to move into one of the apartments at the Chuck Costello complex. Her family member lived in the apartment complex also. When her family member passed away, she had the task of cleaning out their apartment, which took a toll on her health. At that point, she had to go to a rehabilitation facility and then to a nursing home where she lived prior to moving to her Long Branch apartment.
Anita has been a long-time advocate for individuals with disabilities. She got connected with the New Jersey Council on Developmental Disabilities’ Monday Morning project as a secretary and co-facilitator. She was instrumental in getting guest speakers to come and present on what could be done to help people with disabilities. She was also involved as a member of the advisory board for people with disabilities in Middlesex County, and she was a member of the advisory board for Para-Transit. Prior to the move to her apartment, she and Krystal advocated for her to receive funding from the Division of Developmental Disabilities (DDD) to help support her in the community. She was able to qualify for funding through the Money Follows the Person program (MFP) now known as I Choose Home New Jersey. For more information about I Choose Home New Jersey go to: www.state.nj.us/ooie/ichoose/index.shtml. With the help of Krystal and others, they pushed Anita is no ordinary lady. She’s one her to continue her advocacy to get funding incredibly tough advocate fighting the good through DDD, and her persistence paid off. fight for herself and others. She is one feisty human being who’s living a life that many have For individuals who are interested in dreamed about. She lives in her own apartment advocating for themselves, she has some advice. in Long Branch, New Jersey, which happened “Don’t give up. Find the right people to work because she never gave up. In fact, prior to with – someone like Krystal Odell. Go through living in her own apartment she lived in a the process. Just do it.” nursing home. She states, “I felt like I was in prison when I was in the nursing home. I felt out of place because people there were twice Transition to Her New Apartment my age.” Her residency in the nursing home Her transition did not come without a few lasted for three years. My Life Now | 11 challenges. After the decline in her physical developmental disabilities and all people to health, she had to work hard to get herself back in participate in the voting process. “One of the good condition to be able to live in her own most rewarding things as a citizen is to be able apartment again. At that point, she was using a to vote in the political process and to make your wheelchair. She had to learn to walk again so that voice heard,” said Anita. She is excited about she could evacuate from her future apartment within the three minute requirement, which is DDD policy. With the assistance of a walker, she was able to evacuate in the allotted time. Her hard work paid off, which allowed her to be able to live independently with the support of the staff of PennReach. Before moving into the new apartment, she also had to wait for the approvals to come through on the apartment. According to Michelle DelBove, behaviorist for PennReach, they “…had to get the right approvals from the state. They had to get the certificate of occupancy and the apartment had to be inspected and licensed. The staff also had to learn about Anita and understand her needs. It took time, but went well.”
The staff of PennReach love supporting Anita. Ro Davis, direct support professional said she “…loves that she [Anita] speaks up for herself. If anything is wrong, she doesn’t have a problem letting you know. She always likes doing things and tells what she wants and doesn’t want.” Ro continued, “Anita encourages me and gives me pep talks saying ‘yes you can do it.’” Assistant Program Director Kevin Gilmore said he loves her “… adventurous spirit.” When he comes in the morning, she fills him in on the latest in the news. He said, “It’s really great.” Michelle also shared her sentiments about Anita. “Anita has become family to us. I’ve known her for a few years now. It’s a good relationship. We’re friends and family.”
As with any transition, the staff had to learn about any health challenges that Anita had to make sure that she is supported Anita and Michelle DelBove, appropriately. She has diabetes, which is PennReach being controlled well. The staff members teach Anita how to eat her favorite foods so that they do not affect her negatively. They choose sugar free options for her when necessary, and her food is getting to vote in the upcoming presidential portioned appropriately. Anita and her staff have a election and beyond. She planned on going to a great time preparing her meals, and she loves town hall meeting in Long Branch and Phil participating in the meal preparation process! Murphy (who is running for governor of New Jersey), was going to be there. Anita shared that she would like to volunteer at Congressman Importance of Her Political Life Frank Pallone’s office. When she lived at the Chuck Costello Apartment Complex; she invited Politics are very important to Anita. She Representative Rush Holt to the apartment expressed how important it is for individuals with complex’s council meetings as well to speak in order to help others in understanding the 12 | November 2016 political process and learning how the politicians could help people with disabilities.
Community Life Anita is enjoying life in the community. Her staff members take her to festivals, the beach, shopping, and to the movies just to name a few. She went on a shopping trip where she made the purchase of a lifetime. The purchase was a gumball machine. It was no ordinary gumball machine. She purchased it at an antique store, and was able to effectively haggle for the price she wanted to pay for it. The gumball machine is for display only, and she is extremely proud of it.
Her apartment complex is a fun place to live. It’s a real community, a family-oriented community. She sees children getting off their school buses at 3pm during the week. The ice cream man comes around while the children are out playing. “It’s different than living in a DC [developmental center]. These homes are normal homes. People put out their trash and do regular things,” said Michelle.
For four to five hours a day, Anita attends the “All in a Day” day program. She does exercise, participates in activities and plays different games. The program has scheduled many activities for Anita and the other attendees. Some of the activities include shopping trips, to the movies, and out to eat.
Sometime in the future, Anita would like to participate in the Citizen’s Police Academy in Long Branch. She wants to learn more about how the Long Branch police department works. “I always try to be active in the community. I want people to know about community living. I want them to know how happy I am getting to make decisions on my own. I’m getting used to living on my own with a lot of support from my direct support professionals,” said Anita.
Community living and independence are proving to be very positive for Anita. “I love living without a housemate. I love it very much. I get to live independently and don’t have interference from people,” said Anita. Anita’s activity in the community is paralleled by her willingness to be involved with serving her community. From politics to donating to the Special Olympics, Anita is fulfilling her life being an active participant in her community. “It’s like a dream come true having my own place by the shore. I feel so proud,” Anita said with the brightest smile imaginable. Life is great for Anita.
Ro Davis, from PennReach, sharing a fun moment with Anita
My Life Now | 13
‘A Different Way of Life’ By Antoinette S. Johnson
“My whole attitude changed after seeing always desired for her. She lives in a beautiful the home. Everything here is wonderful. It’s home where she is growing, learning and doing not overcrowded. It’s individualized care. It’s things that most people want to do in their life. home.” This was the sentiment that Kitty She has a life and has “come out of her shell” shared when describing her sister-in-law according to her brother Joe and sister-in-law. She enjoys going to dances, out to eat and Debbie with Joe and Kitty, her brother recently went on the and sister-in-law Spirit of Philadelphia boat cruise with her housemates and other residents who are being served by Quality Management Associates (QMA). In fact, Debbie was proud to show the picture of her and her housemates on the Spirit of Philadelphia. Before moving to the community, Debbie lived at the Ancora Psychiatric Hospital, Vineland Developmental Center (VDC) and North Jersey Developmental Center (NJDC). The family first met team members from the Community Living Education Project (CLEP) at a family meeting held at New Lisbon Developmental Center (NLDC). The family was extremely apprehensive about Debbie moving to the community. In fact, Joe and Kitty were emphatically against community living because of horror stories of abuse and neglect they heard in the past. Debbie’s home in the community. Kitty Kitty was very upset about the possibility of continued, “Everything here is positive. She’s Debbie moving. “We wondered what kind of care catered to. They do things. There’s such a she would have,” said Kitty. Part of the different way of life [in the community].” apprehension was because Debbie had lived in an Debbie is living the life that her family has institutional-setting for more than 60 years.
14 | November 2016 After attending the meeting at NLDC, the she lived at North Jersey DC. family was open to seeing what a community Debbie was born one of four children in home looked like. Natalie Trump, one of 1947. She currently has one brother, Joe; CLEP’s team members, took them out on a visit. another brother David, passed away in 1991 On this visit, Joe and Kitty were pleasantly after an illness. Debbie also had a sister, surprised that a community home looks just like Dolores who passed away at a young age. any home in the community. She replied on the When Debbie was a child, after her mother visit with excitement, “This is what it’s like?” passed away in 1951, the family made the From that point, their minds were changed about difficult decision to place her into the NJDC. community living. Joe and David were very young at the time They attended a transition meeting for also. Debbie, and were pleased about how caring the Although Debbie’s guardian is with the staff members were at the meeting. After some Bureau of Guardianship Services (BGS), her time, they had a change of heart and decided to brother Joe and sister-in-law Kitty are very be in the driver’s seat concerning Debbie’s involved in her life. The BGS welcomed Joe transition. They felt it was better to get the and Kitty’s involvement as well as other transition done working as a team instead of members of their family. They work together putting the decision making in the hands of as a team to ensure that Debbie receives others. “It’s better to work with people to get everything that she needs in her life. The BGS the transition done the way you want instead of was very accommodating when they were waiting for her to be transferred to a place that is looking for an agency that would best serve too far away,” said Kitty. It worked out Debbie’s needs and the home where she would beautifully for the family and Debbie because be living. Debbie lives only 25 minutes away from the When the conversations began regarding family. They had much further to travel when transitioning Debbie from the NJDC, her family had concerns. In addition to their concerns about abuse and neglect, Joe was concerned about her ability to socialize. Joe and Kitty are happy to report that they do not have fears about Debbie’s care anymore. They are happy that Debbie has individualized attention, she has a life filled with wonderful activities and she is loved by the staff of Quality Management Associates. She has a special relationship with Shaneek Witherspoon, the program manager. Shaneek adores Debbie. Their relationship is so special, and it shows in their interactions with one another. Shaneek shares her affection for Debbie – “She went through so much. She has come so far. She is a fighter. She’s a very strong lady, and she’s so sweet.” Shaneek continued with a laugh and said, “She calls me ‘Esther’.” Debbie and Shaneek spend a lot of time together. Shaneek and other direct support professionals have taught Debbie some skills. She has learned how to clean the dishes after dinner, which includes rinsing the dishes and putting them into the dishwasher. Debbie is so helpful with her housemates. Some of her housemates
My Life Now | 15
Debbie’s Story Continued on Page 21 changing, things were fragmenting and it was getting more difficult for mom to support ‘My Pad…I Love This Place’ – David at home.” A Waiting List Story A representative from DDD contacted Mrs. By Natalie Trump O’Rourke to discuss support options for David, and then Cindy spoke with Patricia (Tricia) Brennan, DDD director of waiting list and special projects, and learned David’s current David greeted my colleague Antoinette rank on the priority waiting list. After speaking Johnson and me when we arrived. He is a with Tricia, Cindy spoke with Dawn warm, talkative and friendly guy who loves Schellenger, David’s DDD transitional case his new home; he calls it his “pad.” David moved into his “pad” on June 28, 2016. He previously lived with his mother, Arlyne O’Rourke, in their family home for 57 years. David loved giving us a tour of his spacious home. His large first floor bedroom, with hardwood floors, is decorated with family photos. A large picture window lets in tons of sunlight to the room that also contains a queen size bed, large closet, dresser and night tables. David also has his own flat screen TV. David lives with four other guys Tom, Mark, another gentleman named David and James. There are two bedrooms upstairs along with an agency office and three bedrooms downstairs, a kitchen, dining room, large living room, and tremendous backyard with a two person swing which David enjoys. Enable is the provider agency that supports David 24 hours a day, 7 days a week. While living at the family home, David enjoyed being with his mom and her friends. He accompanied his mom and the Tri - County Senior Citizens group on trips to California, Florida, and cruises to Bermuda and Alaska. They also visited Thailand, Ireland, Hawaii, and Canada. He and his entire family have gone on trips to Las Vegas and to New Jersey’s Long Beach Island. How it All Began…A friend saw an article in the newspaper about the waiting list, and David’s sister, Cindy Garwacke, began making inquiries because David was on the DDD waiting list for residential services. Cindy stated, “The family was searching for placement for David because things were changing for mom and also for David. Things were not working as they did manager (TCM). Dawn told her that DDD was before. David’s support needs were asking families on the Waiting List to see if they were interested in immediate placement as part of their Vacancy Project. David’s family 16 | November 2016 said yes to residential placement and Dawn put out referrals to provider agencies with vacancies, letting them know David’s support at their “Lebed” home. needs. There were two providers interested in After the meet and greet Denise met with supporting David. Dawn to discuss what transpired. Enable Provider Agency Meet and Greets… wanted to serve David in one of their two Initially, Dawn scheduled meet and greets homes but felt the Lebed home was the right with two providers. They decided not to go to choice for David. Dawn then spoke with Cindy, one of the homes because the location was and the family was interested in touring both of too far, and they did not feel the housemates Enable’s homes; David chose the Lebed home. were a good match for David. The home they The family agreed this home was the better did choose to visit was run by Enable. choice in terms of David’s safety because it was not near a highway. Cindy stated, “Denise was exactly right!” She continued, “When we visited the Lebed home we said this is it, it David and his family: Mom, feels right.” Four other men were already living Arlyne, Cindy and Gary, sister in the home but were not there during the and brother-in-law family’s visit. However, Cindy continued, “I could tell their personalities just by looking at their bedrooms. One gentleman liked videos, another liked music and another liked magazines. It seemed their personalities and likes matched up with David’s. This is also the perfect setting because he’s fifteen minutes from mom, twenty minutes from me, thirty minutes from our brother Danny and only five minutes from his girlfriend Lori.” The Offer of Placement Letter…Cindy let Dawn know they were interested in the Lebed home. Then DDD worked on finding a day program for David to attend. Dawn began working on getting David Community Care Waiver (CCW) eligible. For more info on CCW and eligibility please go to: http:// www.state.nj.us/humanservices/ddd/services/ ccw/ David also went through the Division of Vocational Rehabilitation Services (DVRS) and completed an assessment. They all agreed that working wasn’t appropriate for David and the family explored the traditional day services route. His former day program was offered to him again since day services are a DDD requirement; David said no to his previous program. Gary, David’s brother-in-law went with him on a tour of Enable’s Fusion Day Services in Middlesex and David chose this day program. Dawn met with the Enable staff and talked with David’s family at the Lebed home. They discussed setting up dinner visits every Monday for a month or two, in order for David to meet David’s support needs were shared with his housemates and get to know them. After the Enable staff. Denise Gaetano, the director of dinners at the Lebed home, “David would come residential and day services from Enable, home hollering ‘I love this place, I love this attended this meet and greet at the family home. Denise felt David would be a good fit My Life Now | 17 personal things he would be taking with him to his new home. They talked about medications, who were his current doctors, getting current medication scripts from his doctors, and they updated information about his medical needs. David also had to see the doctor for a complete physical within seventy two hours before moving into his new home. The family had some concerns about David’s transition. Cindy was “…worried about something happening to David. I was concerned what would happen if things changed for my mom and she couldn’t care for David. I didn’t want that to happen before they were able to find David somewhere to live that worked for him.” They decided on a move in date of June 28, 2016 and had the thirty day follow-up review date, July 28th. Since David is living in a DDD licensed group home setting and is CCW eligible, the provider, Enable, must write an Individual Habilitation Plan (IHP) for David. Left to Right: Dawn Schellenger, DDD, At the thirty day IHP meeting, goals Arlyne, David, Cindy, and Keith Johnson, were talked about and set in place Enable for David. Keith stated that David wants to improve his daily living skills, working on laundry (washing place,’” said Cindy. He enjoyed the dinners and drying his clothes). Staff is also available and the company of his housemates.” to assist him and teach David how to do his After David’s second dinner with his laundry. Keith stated, “The main goal is for housemates, Denise said the guys couldn’t David to do it independently. David’s second wait for David to come back the next week. goal is to be able to make his own lunch each She stated, “We’re off to a good start!” Keith, day. David now has an official IHP that is the group home manager said the guys were good for a year, and must be updated yearly.” looking forward to him coming back. They The challenge of letting go – How Mom told Keith “we don’t want anyone else!” and David managed the change… According The Pre-Placement Meeting… Dawn held to Cindy, “It took a little while, letting go and a pre-placement meeting with David, his separating was a challenge. My mother is an family and Enable. Dawn wrote David’s exceptional 93 year old and still lives on her transition plan in order to move him from the own. David went everywhere with her and family home to his home in the community. hung around with seniors. He had had no Dawn worked on getting David Community interaction with others his own age. My Care Waiver (CCW) approval. Dinner visits mother explained to David that it would be continued and Dawn arranged an overnight better for him to live in his own home. It was weekend visit for him. They decided David hard for them at first to let go and leave each would initially start the Fusion Day Services other, and my mother explained it was better while living at home (before moving) so he for the both of them. Mom doesn’t have to do could get used to it. They talked about what everything, she doesn’t have to worry to get him out of the shower, to give him his 18 | November 2016 medications, to get up during the middle of the night with him, nor worry about his day to day care. David depended on mom a lot when attending the Fusion Day Services. This he lived at home. Mom couldn’t do it program supports people with behavioral anymore. Now he’s learned to be very needs. There are two pieces to the day independent, they get to enjoy each other’s program. One is the weekly schedule of company. They get together on weekends and activities inside the day program. There are have fun.” breakout rooms for inside activities, along David’s Progress Since Moving to His with a sensory room with a waterfall, chairs Pad…“This has been positive,” said Cindy. and mat. It’s a soothing room for someone to “David is more independent now and not relax in and have some quiet time. The dependent on mom. David understands that his second piece to Fusion Day Services is their Mom has her routine and David has his outing calendar, which are activities that are routine. David is up at 6am and is doing a lot planned out in the community. At day more things now and is taking care of himself. program, people are given three choices and a Cindy expressed how David is more vocal and variety of things to choose from. They get to structured in his day. When he comes home to choose one trip in the morning, one trip in the visit he’s more helpful because he’s learned it afternoon and one to three activities to do. at his group home. Now he’s helping mom! Octavia Brown, a behavior support David learned to make his lunch for day professional at Enable, works on site at program, is learning to do his laundry, keeps Fusion Day Services. She trains staff and also his room neat, takes the trash and recycles writes Behavioral Support Plans (BSP) for out.” Keith said, “David’s housemate Dave those who may need support. “I like to see took him under his wing and taught him how what kinds of behaviors happen at day to do the trash and recycle chores.” program. I look to see what the antecedent David’s likes… “David loves talking was to what happened before hand, in order about sports with Cindy’s neighbor Steve. to prevent the behavior the next time,” said Gary loves hanging out with David. They went Octavia. She makes a lot of observations, to a Mets game in May for David’s birthday. develops guidelines for those people that may When they go to games they ‘eat like men’ need a BSP. While we were visiting the day and load up on everything they want. Mom program, David chose to work on counting says, ‘Don’t feed him a lot of junk’ and Gary money. He went to the closet to get the says ‘they’re going to eat like men.’” money counting game. Octavia asked David According to Cindy, “David David with Keith Johnson and loves and Denise Gaetano from Enable connects with Keith the group home manager, as well as Eddie and Tina, direct support staff. David jumps on Eddie to give him a hug. Keith and Eddie kid around with David. David likes when they talk man to man with him. Tina takes good care of David and looks out for him!” Fusion Day Services… David likes My Life Now | 19 to count the change she put out on the table. Octavia Brown from Fusion Day Services David counted the change correctly. When and David about to work on money skills asked to choose the $5.00 bill, David was able to do that. Octavia said, “I have seen tremendous growth in David and its awesome! He was not good in math, and now he is doing well.” Individuals who attend the day program are not grouped and have choices within the program. David is one of three individuals assigned to one staff member. He decides what he wants to do at the program. They have health and wellness and play Wii or Xbox games. They go bowling, dancing, and have Yoga class. They walk in the park and walk in the mall when weather is not great. If David has a cold or is not feeling well, he gets to stay home and staff will take care of him. Denise stated, “The purpose and focus of having supports residentially as well as at day services is for each individual to have choices, to be happy and engaged. At Enable we send notes home through a ‘Communication Log’ (a composition book with a running log). This book goes back and forth from day services to the individual’s residence and helps to facilitate conversation between the individual, staff, housemate, or family member, regarding how their day went. Also, if anyone has questions or comments they can send a note back through the communication log. For Denise stated, “David is happy and example: If an individual didn’t sleep well lighthearted. Playful and funny. He likes to the night before day program, the group joke around. He is very kind and wants to make home staff or family member would write a sure everyone else is okay. He checks with his note to let day services staff know the person staff, his friends and if he didn’t know someone didn’t sleep well.” Denise continued, “We he would ask them if they are okay.” really care; we have an amazing caring staff There is no question that David has grown that respects the individuals we support and since moving to his new home. Cindy feels that treats them as their family and friends.” “he’s not asking for our approval anymore. He What David’s Staff Like and Admire tells us what he’s doing! He has so much more about Him...“David’s outgoing personality. interaction with others, his housemates, at He is well known in his neighborhood. Fusion Day Services. He’s picking up on things David’s housemates love him. They have and coming into his own.” good working relationships they interact Advice for families…Cindy feels, “Being a with each other and three of the guys attend waiting list family and going through this the same day program. They have all bonded journey, my advice is to START NOW! Read well together. David is very social, I hope to up on the programs that are available for your be like him one day,” said Keith. Dawn feels loved one. The sooner you start the better!” “David is so social and easy Cindy continued, in addition “Families need to going it’s like a breath of fresh air. He’s understand about guardianship.” Denise happy content and easy to please. He’s very suggested that families, “Spend time with the loving.” provider agency, go see their homes, and make sure it feels right. Families should ask 20 | November 2016 questions, share with the provider the needs
David’s Story Continued on Page 31 Continued from Debbie’s Story Page 15
use wheelchairs, and she will help to push appointment with a doctor whom Debbie saw them around the house. She also checks to years ago to help rectify this situation by getting make sure they have eaten. In addition, she her medications back in place. Shaneek refused likes to help around the house doing various to give up. She and the staff would work things. She has adapted very nicely to her tirelessly with Debbie to help allay her fears and home. reassure her by helping to calm her down with Shaneek makes sure to keep in touch with lavender oil rubs to massage her to sleep. Debbie’s family by letting them know when Although this was a difficult road to travel, Debbie is going to her doctor’s appointments. Debbie’s life has done a 360 degree turn around Shaneek will contact the family on Debbie’s thanks to Dr. Levitas, the case manager, Shaneek behalf when she wants to call to speak with and the staff of QMA. She now goes out and Kitty. enjoys life. She went to see horses to get over her Debbie’s life in her new home is fear of animals and things that moved. Shaneek is so proud of Debbie’s progress. Fran McDonald, director of development from QMA, spoke highly about the QMA staff members who serve their individuals. He said they hold bi-monthly training sessions so that individuals can be properly supported in the community. They also have a holiday party in which families, staff and individuals who are served all attend. Everyone gets dressed up, they have a DJ, a photo booth and they dance the night away! As Fran spoke about the care that QMA provides to their individuals he said, “We strive to make sure that all of our residents are well cared for.” In reference to Debbie, Fran feels that Debbie has adjusted well to her home. “This is her safe place. This is her home. QMA strives for making a home a home,” said Fran. It was evident that DEBBIE LOVES TO SHOP! She likes shopping with Shaneek for shoes, dresses, hats, pocketbooks and sunglasses. During the interview, she showed some of her stuff like her hats and sunglasses. Most of the activities, like shopping, happen on Shaneek Witherspoon from Quality Management the weekends. Monday through Friday, Associates and Debbie sharing an endearing moment she attends a day program, run by QMA, where she loves to work with paper and shred! wonderful. However, the transition did not The sentiment was clear that Debbie is well occur without some challenges. The liked and loved. What’s not to love about challenges were connected to her medications. Debbie? She has a wonderful life and personality Prior to her transition, medication changes to match. Kitty loves Debbie’s “hugs and were made before Debbie left NJDC, which unconditional love.” “I love her, she’s a gentle affected her adversely. These medication soul and I love when she laughs,” said Kitty. Joe changes caused Debbie to have sleepless loves the fact that Debbie’s “…a little free spirit!” nights, and she was afraid to leave her home. The apprehension the family felt prior to In addition to the fear of leaving her home, she Debbie’s move is completely gone. “The people was afraid of other things like people, animals, are so important. When you feel the people really and getting into cars. Shaneek and the case manager worked together to get Debbie an My Life Now | 21
care it makes a big difference,” said Kitty. Concerning community living, Joe has also had a change of heart. He spoke openly about how his father may have felt and what he wanted for Debbie’s life. His father’s wish was “…that Deb live a long happy life.” Joe continued, “My father was concerned about what would happen to Deb. He had no idea about group homes and commu-nity living [when he was alive]. If he saw Deb today, he’d be very happy she’s taken care of.” Kitty continued to rave about community living – “There’s so much to her home. It’s something you have to experience and feel. Come walk in and see a home. We are so grateful! For families who are not sure about community living, Fran mentioned that “QMA wants families to have choices and recommends they visit a few providers.” Joe suggested that families “keep an open mind about the overall picture. Come to the CLEP meetings to learn.” Being involved with your loved one’s transition is extremely important. Kitty suggests that people get to know the team of people who are involved who will be transitioning their loved one. The family couldn’t be happier with Debbie’s life. She has regular daily activities and is able to enjoy herself. Shaneek said, “Debbie is happy to be here. She loves living here. We’re glad she’s here. We love her. She’s a perfect fit in this home, and we can’t live without her now. The staff call Deb ‘Auntie’. We are a family and a super great team here!” Kitty feels Shaneek’s sentiments and said, “It’s warm, friendly and caring. I know Deb is safe here, and she’s happy. She’s gotten over so many fears and that’s a credit to the staff. A lot of effort went into what Deb needs. After all these years, she’s home.”
22 | November 2016 Gary’s Life is Not a Sprint, it’s a Marathon worked with Gary to help him By Antoinette S. Johnson obtain eligibility. Once he became Gary is living his dreams in ways that many DDD eligible, his transition from Cheshire was people could only imagine. He is living in his not difficult. He had an overnight stay at his own apartment with a housemate, has many current home then fully transitioned there. friends and participates in activities of his Carol, Gary’s mom, went to see the choice daily. He is living a life of indepen- apartment before Gary moved. She was dence and is very happy. pleasantly surprised about how nice the apartment was. Growing up with his two brothers Glenn and Gregory was wonderful for The Transition Gary. Carol recalled fond memories of her sons Gary lived at home with his family until he when they were children. They never treated was 21 and then, in 1988, went to the Cheshire Gary like he had a disability. They played Home rehabilitation facility for people with together and roughhoused with each other as physical disabilities in Florham Park, NJ. He siblings normally do. Gary loved it. lived there for four years. In order to move to Gary often liked being out of his wheelchair his new apartment in Morristown, NJ, Gary had and playing on the floor. One day, Gary decided to become DDD eligible. The Arc/Morris that he wanted to go upstairs. They lived in a colonial. Carol went into the room where Gary was only to find him not there. She called for him and found out he was upstairs. He learned to scale his way upstairs and then come down the same way. That was very impressive, and showed that he was a determined child. He wanted to live his life like everyone else and be able to have independence and freedom. Carol recalled Gary‘s move occurred during a hectic time. It was at the same time that one of Gary’s brothers was getting married. After the move, Carol felt emptiness in the house – the sons were gone and her husband, Greg was out hunting. She admitted she felt “…nervous about the move. Gary made my life very easy. He never complained about anything. He has a nice personality.” He gets to visit his mom in Pennsylvania when he chooses, and his mother comes down to visit Gary also. Gary SKYPE’s on Clockwise: Bill Testa and Deborah Bunk from The his laptop to contact his mom Arc/Morris, Geoffrey McGrane, Gary and Carol, when they are unable to visit Gary’s mom each other. Also, he SKYPE’s with his brother Glenn. Gary has lived in his apartment for 24 years. Staff My Life Now | 23 he receives at the Developmental Disabilities Clinic. Some of the activities that Gary has enjoyed through The Arc/Morris include going to the movies, to the Rockaway Mall, and a barbecue that recently took place in the yard on his apartment complex. Individuals who live in other houses supported by The Arc/Morris attended the barbecue. Gary said, “They really do it up.” He mentioned they had hot dogs, hamburgers, baked beans, corn on the cob and potato salad. Gary participates in an adaptive recreation program where he goes bowling. He named his bowling ball the “Red Demon.” Besides bowling, he likes other sports. His favorite teams are the Giants, Jets, Mets and Yankees. Another sports activity that Gary was happy to discover was marathon running, and he shares this activity with a very special friend.
A Friendship is Born The first organized 25 mile marathon was held in Athens, Greece at the 1896 Olympics, which was 118 years prior to Gary running his first marathon with his running partner Geoffrey McGrane. The feat was remarkable because Geoff ran while pushing Gary in his wheelchair the members are available at the apartment whole length of the race. complex 24 hours a day. There are pull cords The first meeting between Gary and Geoff throughout his apartment in case he has an was set for June 16, 2014. It was a life changing emergency. Gary receives supports from The moment for both Gary and Geoff. Geoff, an Arc/Morris to meet his every day needs. The accomplished marathon runner, wanted to try Arc/Morris provides Gary with transportation something new that would include a partner to his daily activities, including the Hanover because he wanted to do something fulfilling and day program where he likes to shred paper and meaningful. He researched the story of Dick and to other community outings. Deborah Rick Hoyt who have been running marathons “Debbie” Bunk, manager of his residence, together for decades. As he envisioned the adores Gary. She said, “…he is easy to work possibility of running a marathon with a partner, with.” If they are unable to go somewhere, he he was inspired by their story and made the might be disappointed, however when she decision to do it. For more information about explains the reason why, “he’ll say okay Dick and Rick Hoyt, please go to: because he’s understanding,” said Debbie. www.teamhoyt.com. At times, agencies run into challenges that He contacted the Special Olympics to find a affect the individuals they support. One partner, and they suggested he contact The Arc/ challenge that they were able to overcome was Morris. Geoff spoke with Gail Paradise, locating doctors. After his move, they were assistant executive director of The Arc/Morris able to find medical and dental care through the and as Geoff explained to her what he wanted to Developmental Disabilities Clinic, which do, she immediately thought of Gary who she operates out of the Morristown Medical Center. felt would be a great partner for Geoff. Everyone involved is very happy with the care When Geoff and Gary met for the first time, 24 | November 2016 Geoff admits he was a little nervous because he didn’t know what to expect. This was his first time, in his running career, contemplating the possibility of running with a partner, who happens to use a wheelchair, as part of a “Duo Team.” Geoff, Gary and Debbie sat down together to iron out the details. One detail to figure out was finding an appropriate wheelchair to run with. Geoff reached out to a nationwide charity called, My Team Triumph, and they helped him to get a durable wheelchair suitable for racing. Once the wheelchair was secured, they began planning their practice sessions. “Debbie did the hands on coordination regarding supporting Gary and helping Geoff with his needs,” said Bill Testa, executive director of The Arc/Morris. Bill mentioned, they would practice on the old grounds of Greystone Psychiatric Hospital and Central Park of Morris County. Their practices were tough and nothing short of amazing. Geoff said, “The first run wasn’t that long. I just wanted to get our feet wet.” The schedules varied, and they ran on some weekends. Debbie and Geoff came up with a plan that would solve potential weather issues. They decided to load up the wheelchair with items, like bricks, that equaled Gary’s weight so that Geoff could still practice if Gary was unable to come. One time Geoff’s mom stood in for Gary since she and Gary weighed about the same amount. Their first race as a duo took place in October 2014, in Scranton, PA. It was a full marathon (26.2 miles). “It was a nice day,” said Carol. This race was extra special because Gary’s father, Greg was still living and was able to see him race for Photo Courtesy of The Arc/Morris the first time. They were seen by all as the color of Gary’s wheelchair was red. In fact, Gary’s racing outfit is red, and he also wears a red helmet! Their time in the Scranton was ready to go and when Geoff checked in with race was 3:01. They came in first for the duo him during each race, he noticed that Gary was competition. In addition, they ran in the Boston “in the zone.” Debbie made sure that Gary had Marathon in April 2015 and the New York City snacks that he could eat during the race to keep (NYC) Marathon in November 2015. Their his energy up. He had protein smoothies made of times for Boston and New York were 2:58 and yogurt and peanut butter. One of the fun parts of 3:03 respectively and those were full race preparation is being able to eat lots of pasta marathons. They came in first place for both of the night before, which they were able to do for those competitions. The NYC Marathon was the NYC and Boston marathons. ground breaking because that was the first time that duo teams were permitted to run in the race! The Life of a Marathoner Geoff couldn’t have picked a better partner According to Carol, “Gary has a more active to run with. “…he is so easy to work with,” social life than mine.” He stays busy. When he’s said Geoff. Even though they had to be up and out by 5am, there were no complaints. Gary My Life Now | 25 not running marathons, he visits with friends, and However, he smiles the most out of anyone I he goes to wrestling matches and Nets basketball know.” His mom says that “Gary made a games. Also, Gary likes to dance and tap dance. difficult situation very pleasant. He never ever On May 20, 2015, Gary was the recipient of the complained about anything.” Bill admires “… Bill Sackter Award through The Arc/Morris’ his character and his spirit. He’s an incredible Volunteer Recognition and Awards Ceremony. human being.” Go to www.billsackter.com for information. In Gary is incredible. He has accomplished addition, after the Boston Marathon, Gary so many great things in his life. His mother, received recognition by the mayor of Morris brothers, friends and staff members couldn’t be more proud of him. Carol is at peace with Gary and his life knowing that he is being cared for by wonderful people. Gary has a circle of support that has contributed to his success – similar to the success of the fulfillment that running a marathon can bring. Marathons are not easy. They are challenging, you have to put in a lot of work, and they can be treacherous. However, the accomplishment that they give when you finish brings about joy, pride and admiration for accomplishing that feat. All things considered, it can be said that Gary’s life is definitely a marathon and not a sprint.
Source: http://www.history.com/ news/ask-history/why-is-a- marathon-26-2-miles
Township at their town council meeting. According to Bill, there were approximately 10 high school students in attendance at this council meeting because they were receiving recognition for participating in soccer. The kids were visibly impressed by Gary and Geoff’s receipt of recognition for marathon running. It was apparent to the kids that anything is possible if you put your mind to it and do the work to achieve it. Gary is very inspiring to many and those individuals who serve him share that sentiment. “He is always happy, always. He never gives up. He’s got a good attitude and has very few requests. I try hard to accommodate him [when he has requests] because he rarely asks for anything. When he asks, I know it’s important,” said Debbie. Geoff admires, “…his positivity and his outlook. He could be bitter and negative. 26 | November 2016
Self-Advocacy Leads to a Great Life By Ann Martinelli
Roy’s bright smile and twinkling eyes piece work he completed. When asked welcomed us as my colleague, Antoinette about how he participated in the decision Johnson, and I arrived on a hot summer day making process to move from Woodbine, in August, to his home in Hammonton. The Roy replied, “I’m the one who wanted to Arc of Atlantic County provides the support move because of my life there; it wasn’t my services Roy needs as he lives life to its lifestyle.” fullest within his community. Roy is a busy According to Roy, his social worker at man, always looking to explore and learn as Woodbine, Robert Fox, assisted him as he evidenced by his drive to do more. navigated the transition process. Roy Roy lived at Woodbine Developmental proposed the Arc of Atlantic because of his Center from 1990 until he moved to his past experiences with the agency. Two current home in April of 2014. He attended other provider agencies visited Roy after a day program where he did piece work and seeing his “background on paper” but Roy then worked at the greenhouse while he chose Arc of Atlantic. Roy shared that “Arc resided at Woodbine. Roy enjoyed the of Atlantic really cares about their greenhouse and some outdoor work more individuals and they want to help them in than the piece work; he received higher any way possible with their lifestyles and wages at the greenhouse than he did for the how they want to live. I just feel so blessed
My Life Now | 27 and confident with their performance, I for special events, particularly a great white would recommend them to anyone who suit he would wear to Woodbine dances. needs the help.” When asked what his Roy’s move to Hammonton was smooth greatest fears and concerns were about but he still faced some challenges. He moving to the community, Roy replied, “I needed to adapt to life in a smaller setting, didn’t have fears, I wasn’t afraid.” The including having his own bedroom. Roy also match was made with confidence and Roy needed to adjust to “new house rules,” which has lived in his home for more than two he did very quickly. Roy’s happiness shone years. through his smile as he said, “My life now is
Roy proudly showing the medals he won from participating in the Special Olympics
Robert shared that he and Roy have so much more…I can look forward to… known each other for many years. They having a much more meaningful life. often enjoyed doing activities outside of Everything just means so much more to me.” the developmental center together. Robert Roy attends a day program Monday also told us that Roy was active in through Thursday where he participates in Regional Family Support Council #5 reading and math activities. He believes the meetings and events (go to www.njcdd.org math activities assist him in making good for more information) and was an officer decisions while spending his money. On at Woodbine’s “Help Yourself” group. He Fridays, Roy does some light maintenance also remembered Roy likes to wear suits work where he is paid to dust, sweep and 28 | November 2016
mop floors. At this point during our Arc of Atlantic game nights, bingo nights interview, Roy explained how he wants to and dances during the week. work more and has been pressing the agency According to Roy, “Another reason I that runs the day program to locate more wanted to be with the Arc is because they paid employment for him. Mark Miller, have so much to offer like Special assistant manager for the Arc of Atlantic, Olympics and bowling, I’ve been bowling has known Roy for many years. He added for years. We celebrate birthdays for that Roy has been a strong self-advocate for everyone, too.” Mark told us the weekend himself and that Arc of Atlantic staff have before our interview, was Roy’s 58th also been advocating for Roy to obtain more birthday. Friends from Roy’s day paid employment. program came to the party as did his two In addition to outside activities, a typical brothers. Roy told us that his sister was day for Roy includes some cooking. “I like coming up from Florida for a two week to cook everything from pasta dishes, visit later in the month; she also comes to chicken dishes to cakes and cookies,” Roy visit Roy and his brothers for an extended said. “I need help with bigger meals but I’m stay at Christmas. pretty good with preparing pasta and Roy participates in the Get FIT everyday meals. If I need help, I can ask my program (a collaboration of the Family staff, they’re always here.” Roy also enjoys Resource Network of New Jersey and the
Mark Miller from the Arc of Atlantic and Roy
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weekend after our interview, Roy was going to Six Flags Great Adventure where he has a season pass. Both Roy and Mark were smiling during this exchange as Roy told us “I like to explore and do and experience different ways of having fun. Something that some people don’t enjoy but I do is the roller coaster.” Roy has been on El Toro, Superman and the Green Lantern roller coasters! Roy delights in scary movies (he showed us his collection which includes the Friday the 13th and Halloween series) and is looking forward to Fright Fest at Great Adventure. Roy said, “It’s pretty spooky” with a grin. Our final question to Roy was what his hopes and dreams were for the future. He answered, “My future goal is to live with my two brothers. I need help with Richard Stockton College of NJ; where he food shopping, doctor visits and things I learns about nutrition and exercise for a can’t do on my own including healthier life). Go to CLEP’s Winter/ transportation. I prefer support from the Arc Spring newsletter for more information on because the Arc knows me.” Roy is a man the Get FIT program at: sph.rutgers.edu/ who knows what he wants and is creating a service/clep/media_center/documents/ plan to achieve his dreams. WINTERSPRING2016.pdf In addition, Prior to working with Roy with the Arc Roy has joined the Arc of Atlantic’s of Atlantic, Mark knew Roy when he was a monthly self-advocacy group where he resident at Woodbine. When asked what he shared that he and others can “…talk liked and admired about Roy, Mark things out.” responded, “Seeing him transform from a “I like to go out, I’ve always been one state run setting to a group home… living who likes to go out,” Roy said. Weekends his life and dreams with different activities. bring out Roy’s adventurous side. The It’s good to see him smile…seeing him
30 | November 2016 happy and having friends.” Mark concluded, “The move from a developmental center to a group home, their lives change for the better because of choices.” We asked Mark how Roy’s life changed since he moved from Woodbine, and he told us “It has changed a great deal. Roy is happy and doing things, moving forward in life…seeing the transition makes the job worth it. It’s not really a job, it’s like family, doing whatever to help…and seeing the whole picture, it’s rewarding. When Mark mentioned that Roy would like to find a girlfriend, Roy added, “I’m a ladies man.” Roy and his housemates were getting ready to eat dinner as we concluded our visit. Before we left, Roy brought us to his room where he proudly showed us his track and field awards from Special Olympics. He also shared the certificates of appreciation he has received for volunteering in his community for the local Food Bank. Roy is living his life, one with many choices, as he plans and looks toward his future.
Continued from David’s Story Page 20 your loved one has now, and what needs they might have in the future.” Dawn felt, “It’s so important for families to contact DDD. We are working with the people who are on the waiting list and letting families know that there are some options. We are building better relationships with families and provider agencies.” Hopes and dreams for David’s future… Just like everyone else David has friends, routine, stability and independence. Cindy hopes that “...he looks back on this moment in five years, and he realizes and continues to say – ‘I’m happy, I made the choice and this is my home (my pad).’ I hope that he realizes that this was a good move for him and that he looks at his home as his home and understands that the family home he grew up in will always be home, but his actual home is where he currently lives, ‘his pad!’”
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Nonprofit Org. U.S. POSTAGE PAID New Brunswick, NJ Permit No.920 Rutgers, The State University of New Jersey School of Public Health Community Living Education Project 335 George Street, Liberty Plaza, Suite 2200 New Brunswick, NJ 08901 sph.rutgers.edu/service/CLEP [email protected]
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