|
home I about I send us a message I information & news I links I site map |
||
 |
||
|
|
||
|
FAMILIES Melissa Wheeler:
Learning to Navigate Adult Life Joan and Bill Wheeler wanted to make a difference in the world, so they adopted five children with disabilities. That’s in addition to their three biological children. They adopted four of the children in New Jersey and brought one home from Russia to live in the wooded town of Shamong in Burlington County. The Wheelers’ children are now ages 37, 36, 32, 23, 21, 19, 19 and 14. Melissa, 21, will age out of the school system this summer. Melissa has spina bifida with hydrocephalus and uses a wheelchair. Daniel, 19, also has spina bifida and uses a wheelchair. Both are students at Seneca High School in the Lenape Regional High School District. Melissa has been active in wheelchair sports since age 7. She and Dan are both in the marching band. “Marching Band has been wonderful with both Melissa and Dan. They love Marching Band. Melissa is also on the school swim team and has an aide for this. She officially leaves the district June 30,” said Joan Wheeler. Transition to Adult Life Melissa is working with Laura Fisher, a transition specialist with Cerebral Palsy of New Jersey (CPNJ), to help her prepare for life after school. Fisher and other staff from CPNJ help Melissa learn the tricks of doing laundry, cooking, cleaning, grocery shopping and managing time and money. Fisher arranges for Melissa to sample a variety of jobs and is currently trying to help her find a paying job. Melissa does volunteer work as one way of job sampling. She sampled office jobs at two nonprofit organizations and at Camp Ockanickin in Medford. At the camp, she also worked in the swim center during the summer. In 2004, flooding caused several dams to burst and the camp’s lake emptied. With no lake, Melissa no longer had a summer job. “She loved the job at the camp and did very well there,” said Fisher. “It was unbelievable that the lake completely drained and she lost the job.” Melissa had hoped one of her nonprofit volunteer jobs would develop into a paying job, but neither had funding sources available. Fisher is trying to arrange to have Melissa do some career exploration at her school district. Her mother said that living in a rural area, finding transportation—especially accessible transportation—is difficult. Fisher agrees. “Melissa has had challenges in the past, like anyone with a disability. Things are not accessible. I’ve had a hard time finding jobs for her because of that. “Since Access Link does not come directly to her house and she cannot get to an Access Link base point, she must use public transportation. The public transportation doesn’t always come on time. One day, the bus was an hour-and-a-half late. It is frustrating for her. It limits her opportunities, as she only has a certain amount of time to do things. “Melissa has a full-access service dog who goes everywhere with her. She takes very good care of the dog and keeps the dog clean at all times. The dog sometimes has trouble getting on and off public transportation, so I talk with the trainer and work with the dog. I give Melissa a lot of credit. She has a lot of stamina to deal with all these stresses and challenges.” Although this is Melissa’s last year of school, she has completed all her credits. Therefore, she spends most of her day hours with CPNJ staff. Fisher has worked with Melissa for three years, but they now spend six hours a day, five days a week together. On Saturdays, Melissa will do service dog presentations for Resources for Independent Living, explaining the use of service dogs to Girl Scouts as part of disability awareness. CPNJ set this opportunity up for Melissa. "Working with Melissa and her family is good. It’s a lot of fun. Melissa is a great person who knows what she likes and doesn’t like. She has learned to do a lot more than she could in the beginning. She can do most of her activities of daily living skills independently. She is a good student. She enjoys working and learning.” How Assistive Technology Helps Melissa had an assistive technology evaluation with CPNJ during her sophomore year and they recommended computerized reading, because it’s hard for her to visually track and focus. They recommended the WYNN program, where someone scans written work into the computer and the computer reads the work aloud. “The school was resistant, but they did provide a laptop and the WYNN program,” said Fred Tchang, the Director of Assistive Technology Services at CPNJ. CPNJ has worked with Melissa on other assistive technology. “Melissa was playing autoharp in the high school band, so we made her a custom lap tray to hold her autoharp in her power wheelchair.” Since Melissa and Daniel both use wheelchairs, CPNJ has been working with the family on making accessibility improvements in the home. “This family has a lot of experience and they asked us to look at home accessibility,” said Tchang. “The kitchen and the front door were not accessible. We helped them plan the accessibility and submitted the request for funding to DDD. When a family asks for accessibility funding, we make sure the family knows all their options about how to make their home accessible.” Since this is Melissa’s transition year, it’s time to pull in community supports. One of those supports is community college. “She takes a course at Burlington County College (BCC) even though she is still a student of the school district. They have a CALL (Career Adaptive Learning and Literacy Lab) computer lab that supports her use of assistive technology. They scan in text for her and WYNN reads the text to her,” said Tchang. Joan Wheeler is thrilled with BCC and their CALL lab. “BCC has been wonderful. She uses her WYNN and the CALL lab provides all her accommodations, scanning in her workbooks and emailing them to Melissa. They are putting the books on CD for Melissa. It’s marvelous. It’s like being on another planet from high school. “The high school never used her WYNN program with her, so Melissa is learning how to use it at the same time as taking a college class. She is doing well and getting good grades. We drive Melissa to her college classes because the district does not provide transportation to the college.” After graduation, Melissa will talk with the state Division of Vocational Rehabilitation (DVR) about receiving adult services. “We are in the process of transitioning her to DVR services now,” said Tchang. “As an adult, she will need some additional assistance. The reading and writing level is different from high school. The high school had not been using the software with her, so she needed a refresher course in how to use it. We also want to look at how technology can support her memory and organizational skills. She will need to take on more responsibility for her own schedule, so her mother has been asking about electronic reminders and organizers.” Life Hasn’t Always Been Easy Melissa has had more than 30 surgeries. She has always attended public school with an aide. Until fourth grade, she attended self-contained classes but her mother said they didn’t expect much of her. In fourth grade, Melissa switched to inclusive classes with resource room support. “She did better in the regular class because they expected more.” Joan Wheeler was a special education teacher who stopped working for twenty years while she raised her children. “I was hell-bent on changing the world and making things accessible. I was naïve, because I thought people would just love my kids and would make the proper accommodations. Since I had been a teacher, I knew we’d have to work hard. But, people couldn’t get past Melissa and Dan’s wheelchairs. They never saw them as just another kid, and that really bothered me. I have always had to struggle to get accommodations for my children.” “When Melissa got to high school, it was a nightmare. In the fall of freshman year, she got a service dog, a golden retriever named Bob. Right from the start bringing the dog to school was a problem. The school never considered that the dog would have to ride the bus, and they told the bus garage to not allow the dog on the bus. I called the Department of Education, and they contacted the superintendent and told him the dog had to ride the bus.” In Melissa’s sophomore year, Dan also got a service dog. According to Wheeler, school employees called PETA saying that the children did not take care of the dogs. PETA sent letters to the family. Wheeler said that both children stayed out of school for two-and-a-half years being home schooled as a result. “They never went back to Shawnee High School in Medford. They switched to Seneca High School in Tabernacle. It’s still sometimes hard to get the right accommodations, but the dogs have regularly gone to school with the children since then.” The junior prom brought some challenges to Melissa. She arrived to discover that the prom was on the second floor of an older building with no elevator. “She had to go up a large step to get to an old stair lift. The tables at the prom were so close together, she couldn’t maneuver around and we had to move things. The bathroom had no accessible stall and she needed to change her catheter.” Her mother filed a complaint investigation with the Department of Education, since her IEP (individualized education plan) says all extracurricular activities must be accessible. They prevailed and Wheeler said the district was required to promise not to do this again. And despite the hardships, Melissa had fun that evening. Although the spokesperson for the Lenape Regional High School District made some comments about Joan Wheeler and the children’s dogs, they said after the fact that their comments were off the record. The District’s official statement is that “The Lenape District does not discuss issues involving individual students and/or parents, and therefore will not comment on the specific complaints made by the parent that reporter Mary Ann (sic) Hunsberger interviewed for Families magazine. The Lenape Regional High School District is known for its outstanding programs and services for special needs students. The district complies with all federal and state laws and mandates and is confident that the needs of all students are being met.” The Future Joan Wheeler said Melissa in learning to become a better self-advocate, and hopes to become involved in her local Monday Morning group and DDD’s Real Life Choices in the future. Her family plans to ask DVR or DDD for funding for an electronic organizer. “With the hydrocephalus, it’s like a traumatic brain injury. She forgets things a lot, so this will help her to remember and to succeed. She wants to be independent and be an adult, and she tries hard to remember things like feeding her dog, keeping track of her homework and knowing when her appointments are. This will help her even more.” Tchang said that assistive technology and advocacy skills have played an important role in Melissa’s education. “For a young adult going through transition, assistive technology has a place in school and beyond. It takes advocacy skills and an established network of support to make assistive technology work. Not everyone has access to assistive technology, so this is something we need to work on.” Twenty Years of Assistive
Technology In June 1986, Cerebral Palsy of New Jersey’s Rehabilitation Technology Services department opened to assist individuals with disabilities. Since people with developmental disabilities had a great need for support, they started by working with people being served by the Division of Developmental Disabilities (DDD). The name of the department eventually changed to Assistive Technology Services (ATS) department, but the goal was the same—to ensure that people of all ages and disabilities in all settings-home, school, work—could know about and benefit from assistive technology. The
ATS department wasn’t interested in a medical way of assisting people
with disabilities, but a community way of providing assistance. “It was
pretty early on for a community support outlook,” said Fred Tchang, the
Director of Assistive Technology
Services at Cerebral Palsy of New Jersey (CPNJ). “We had one of
the first mobile ATS units in the country. We had a van and a
rehabilitation technologist who went out, let people know what assistive
technology (AT) was and then served people. In the first year, we served
over 200 people with one van, one person and a bunch of tools.” The ATS department also spends time accommodating employees, whether their own or others. They rearranged office furniture to accommodate a secretary with a mobility impairment. They have assisted people with back pain by introducing them to ergonomic chairs. They have recommended ergonomic keyboards and trackballs. They frequently change the position of chairs or lower keyboards by removing desk drawers and adding trays. They have recommended software to help employees with learning disabilities. The ATS department helps employers learn to accommodate employees. “I did a job accommodation for an employee with a disability at Quest Diagnostics. Afterward, they wanted us to do a presentation on job accommodations and employing people with disabilities. I hope this will help them find more job applicants with disabilities and not be afraid of providing accommodations.” No two jobs are exactly
alike at the Assistive Technology Services department. “A mom with mild
mental retardation had trouble reading her mail and the notes that come
home from school. We found simple things to help, such as a scanner to
scan her mail, and voice software that would read the scanned mail to
her. We lent her the software to see how she likes it and her son is
helping her use the computer. “These are just a few examples of how AT can help. We want to reach our goal of providing AT to anyone, anywhere.” SIDEBAR: New Horizons for Assistive Technology by Maryann B. Hunsberger Cerebral Palsy of New Jersey’s Assistive Technology Services (ATS) department has plans for the future. They are attempting to convince schools to use assistive technology (AT) with all students, so the child with a disability won’t be the only one using it. “It’s called Universal Design for Learning and it helps minimize children with disabilities standing out from the rest of the class. Also it can directly benefit students without disabilities. Accommodations for reading and writing can help many students, so you can make these tools available to the whole class. All students can use Alpha Smarts, computers and software that support reading and writing,” said Fred Tchang, the Director of Assistive Technology Services at Cerebral Palsy of New Jersey. Tchang and the staff at ATS have been talking with the New Jersey Department of Education (DOE) about Universal Design for Learning, since the DOE wants to implement more AT in the classroom. Until now, the DOE has had no AT guidelines for districts beyond what IDEA says to do. Now, that is changing. The ATS department has contracted with the Department of Human Services’ Office of Education to help develop supports. A committee has been formed to set AT guidelines for local school districts. “This is a positive step,” Tchang said. “When these guidelines are finalized, they will be sent to every school district. It could take a year. Schools understand the need for evaluations, because parents push for evaluations. The next part—making them follow through and provide things—is harder. Teachers and administrators need training and support to be comfortable using these tools in the classroom. It’s an ongoing struggle.” Having strong self-advocacy skills is a large factor in whether transitioning students use assistive technology as adults, so the ATS department is focusing on this. “You’d think it would be need or physical disability that would determine this, but it’s self-advocacy skills. That’s why we are pushing for self-advocacy education. We try to do this when we provide evaluations. We meet with everyone who might be involved in using the technology, including parents, teachers, case managers and students, to press for self-advocacy training.” Tchang said that since funding splits everything up in New Jersey according to disability and type of need (blind, developmental disability, educational, etc.), they are working to coordinate efforts with DDD, the Department of Labor and the Department of Human Services to tie it all together. “This is in a very preliminary stage.” The Assistive Technology Services department is also working with the Kessler Foundation and the Division of Disability Services on a ramp-building project. They are starting with Middlesex and Union Counties. Volunteer labor from the Job Corps will build the ramps. “Home accessibility is a basic need, yet there is no standard funding. People seek funding here and there. Depending on your age or disability or the goals that you have, you may or may not get funding.” Tchang said that the state Division of Developmental Disabilities (DDD) is trying to figure out how exactly AT fits into Real Life Choices—a major reform initiative to provide funding directly to individuals living with their families so they can purchase the specific supports they need. ATS could be a key player in this effort. “We want to help DDD learn which technologies are available and how individualized AT supports can be. Some people might need advice over the phone. Some people might need us to problem solve or they might need help finding community-based vendors. “The Technology Lending Center can help people get the most out of the money DDD provides. Before spending thousands of dollars for equipment, people could try it out. The nice thing about Real Life Choices is that the need doesn’t have to be medical or vocational. It could just be about independence and community participation. So, we could recommend and lend something as simple as a bowling ramp. “Whatever the need is, whatever the disability is, wherever your need is—home, school or work—we want to be sure that people know about and can benefit from assistive technology,” said Tchang. Planning Jessica’s Future by Maryann B. Hunsberger Jessica Mauel’s graduation from Burlington County Special Services School District in June 2004 was a joyous but unsettled time for her and her mother Karen. Jessica was on the school team, went to school dances, took food service classes and, for her last two years of school, worked in the Burlington County Human Services cafeteria. She’d found her niche in food and wanted to continue working in food service after graduation. “She was so thrilled when she graduated,” said Karen. “But I was so scared. I knew she would lose the support she had for so long. I didn’t know what to do for her. I thought I had everything lined up and would get her into food services at McGuire Air Force Base through the Burlington County Occupational Training Center. However, there were no openings and I had no transportation even if there had been openings, since Access Link does not come where I live.” A few months after graduation, the state Division of Developmental Disabilities (DDD) told Mauel about the transition options now known as Pathways to Adult Life. “It gave us the opportunity to plan her future almost like anybody else. We found she had more options than staying at home or going someplace inappropriate.” Jessica, then 23, and Karen were supported by Karen’s best friends at an initial meeting with Mary Kneuer, support coordinator, and DDD representatives Kathy Bellan and Jeanette Marquez. “We talked about writing Jessica’s ELP [Essential Lifestyle Plan] based on what she liked and wanted to do, rather than just at what seemed to be available at first look,” said Karen. “It really helped us figure out what Jessica likes and doesn’t like to do” with respect to employment and adult life activities. Since Jessica didn’t want to stay home or attend a day program, she and her mother chose to do the Real Life Choices option. Real Life Choices is a new state initiative geared to offer more individualized supports for people and families. The team decided against one option often offered to new graduates—job sampling, where individuals experience brief exposures to a number of types of jobs. Since Jessica had training and experience in food service “she already knew she wanted to work in food services.” “There are two ways to do Real Life Choices,” said Karen. “You can use an agency to provide support services or hire someone yourself. I attempted to use self-hire, but quickly felt like I’d need to reinvent the wheel, so I decided to use an agency. The staff was already experienced in exactly what Jessica needed. We chose Avenues to Independent Living. Joan Clark from Avenues is wonderful. They offer job coaching and personal support.” Clark took Jessica to a McDonald’s and to a Wawa to observe how employees do their work. Her first choice was to work at the McDonald’s closest to her home, so Clark talked to the manager, helped Jessica set up and conduct the job interview, and helped her fill out an application. While still providing support, this gave Jessica the new experience of doing things like this without her mom. Jessica landed the job based on her training, experience and positive attitude at the interview. She works three to four hours a day, two days a week. A job coach attends work with her. “Jessica says she is ‘careering’ instead of working,” said Karen. “She plans to stay there until she is old enough to retire, which she says will be at about age forty. A big benefit is that she works only a few hours a week, which fits her needs. She requires a lot of rest and it takes a good deal of her energy to work. Real Life Choices lets us tailor her day. She needs a lot of structure and routine and this helps provide it.” Jessica, who has a neurological disability, is enthusiastic. “I love working with Real Life Choices. I love my job. I enjoy working at McDonald’s, where I do the salads. I’ve learned to make a lot of different kinds of salads. I make Caesar salads, bacon ranch salads, California Cobb salads, blank salads and side salads. Blank salads have lettuce and tomatoes in them, nothing else. I microwave pancakes, biscuits and burgers. I clean the tables by using a washrag and dipping it in soap. I throw away trash that people leave on the tables. I sweep the floor, too. I do a lot there. My favorite thing is making the salads. It’s easy to do. My job coach made me a salad chart to help me remember what goes in each salad. That helped a lot. That was the biggest thing she has had to work with me on.” Including transportation and job coaching, Jessica gets 13 hours a week of support each week. One day a week, she goes out with a support person and chooses what she wants to do. “I do activities,” said Jessica. “Sometimes we go to lunch and dinner. I like anything except Chinese. I love Italian, hamburgers and fries, and I like to get Auntie Anne’s soft pretzels at the mall. I get sour cream and onion pretzels. They are salty, but they taste really good. “We have gone to the Natural Science Museum and the Franklin Institute Science Museum. In the summer, we go to the amusement parks. I am a ride person. I love rides that spin around and go upside down. I’m a real roller coaster fan. I am lucky that I don’t get sick on them. “We go to the mall, the library or other places. We sometimes go to the movies. I like funny movies best. I like romantic movies, too. I don’t like spooky movies or sad ones. I don’t like violent movies, since they give me nightmares. “At the library, I take out books. I have a computer in my room, so I look up books on the Internet, and then I order them from the library. They call me when I have a book to pick up. I like to read Babysitter’s Club books and books about wild animals. I read Animal Hospital books. I get books about kids going into the hospital.” Jessica’s early years give a clue as to why she reads about children in hospitals. Born 13 weeks early at under two pounds, she spent most of her first year at St. Christopher’s Hospital in Philadelphia. “She was tube fed, on a ventilator and had a tracheotomy tube,” said Karen. “Even after leaving the hospital, she was on oxygen for three years. All her problems stemmed from her premature birth. She had 15 hospital admissions up to age nine and still has residual lung problems.” Since then, Karen, separated from her husband when Jessica was nine, has taken care of her at home as a single mom. Today, Jessica is thriving and enjoying her life. Jessica and her mother incorporated functional living skills into her ELP. When her support person takes her out, they work on money skills at stores. Sometimes, her support person teaches her to do life skills at home, such as cooking. “She hopes to eventually move into a supervised apartment with a friend, so she needs these skills to be independent,” said Karen. “At that time, her budget can go toward any staff support that she needs, whether someone to do grocery shopping or to pay the bills. I’m not sure exactly how it will happen, but it will in some form.” “One of the main things I like about Real Life Choices is that it lets you balance what is important for Jessica to what is important to her. Before, I looked more at what was important for her, and wondered what spot I could fit her into at an existing program, not at what she wanted to do. Real Life Choices taught me to do that. Sometime in the near future, Jessica will be working independently. After that, we will discontinue the job coach, and I will drive her to work. A support person will pick her up after work and do additional activities with her. The blessing of Real Life Choices is that you use the money where you need it.” Jessica does better one-on-one than in a group and her mother is thrilled that Real Life Choices considers this. “This is why she gets to spend time alone with her job coach and her support person, rather than going out as part of a group and being coached as part of a group.” Mauel described a discrepancy in how other parents explained Real Life Choices to her and how it actually is. “Other parents told me that this is a hard thing to do because you have to do it all yourself. They said this even though they didn’t know anything about it. They said that DDD would drop Jessica at some program in the morning and bring her home eight hours later. But, that wasn’t true. What they said was wrong. Her ELP is tailored to her. I didn’t have to do all the work myself. I had support through the whole process. I have a wonderful support coordinator who answers my questions and helps at any time. I am part of a team. It was so easy.” Lorraine D’Sylva Lee, Director of Transition for DDD, invited the Mauels to a conference in Atlantic City. Karen was scheduled to speak, but her daughter didn’t give her that chance. “Jessica sat in the front of the room, raised her hand and told them everything about the program, so I never even had to talk! She told them about her days, about her job and about her activities.” The Mauels were also included in a press conference in Trenton where they both got to tell then Human Services Commissioner James Davy how well the program works form them. When Jessica learns to work independently, she will also get a volunteer job and bring her job coach along. She wants to visit nursing homes or work at a pediatric rehab as her volunteer job. “She is comfortable with medicine, since she spent so much time in hospitals,” Karen said. “Without this program, my daughter wouldn’t be doing what she is doing. It would have been discouraging to her to sit home or go into in an inappropriate program. That wasn’t what she wanted to do with her life. It was important to Jessica to work in the food service field. She feels good about herself, is proud of her accomplishments and looks forward to going to work.” SIDEBAR: Supporting Families by Maryann B. Hunsberger Mary Kneuer works as a support coordinator with Real Life Choices through an agency, Neighbours Inc. in Princeton. Kneuer doesn’t consider the people she works with as clients. She says she thinks of them as her family. “Sometimes, families just need us to listen, so we do a lot of listening. I’ve had many hours on the phone, and that’s fine. Families are very isolated. And they become family to me, too, not clients.” The parent of two teenage boys with autism, Kneuer knows how necessary it is to understand who an individual is as a person. “That is our job, to capture who each individual is. We don’t want to know about the disability. We want to know about the person, the things they like and don’t like.” To do this, they use a personal planning tool called an Essential Life Plan (ELP) built. “It’s a way to learn about the individual. We ask the parent to tell us something great about their child, not what disability they have. We do list medication issues at the back of the plan, but we focus first on what is important to and for them, then on what is necessary for their support, and then what is necessary for their safety.” Once they reach an outcome, they then decide how to spend the available dollars and they identify services. “We figure in whatever a typical 21-year-old might want to do. Some individuals want to go to community college. Some want to take exercise classes. It’s wonderful to help with physical health and expand education. We’re hoping to see some graduations from county colleges. Some want supported employment, while some want transportation to and from work. Some want to go out with a companion.” "One mother helped her daughter to find a job, but the daughter wanted a support person on the job to assist her in learning the job and then be more of a companion once she feels comfortable at her job,” said Kneuer. “Community Options provided a support person who also takes her to work. “Her budget also includes vocal lessons as part of her budget, since she enjoys singing. Her ELP team is looking into learning activities through the county parks, since she expressed an interest in weekday recreation. "I like seeing people involved in the community. I would much rather see community activity and gainful employment with supports than day placements." Kneuer links families with agencies and teaches them how to negotiate for their supports. “We help them get the best for their dollars. That is where negotiating with different agencies comes in. Many agencies are receptive to that.” She also helps families manage the paperwork part of their budget. “The parents are the experts and we listen and offer support. It’s all about what is important to and for the individual and supporting the family.” Pathways to Adult Life by Maryann B. Hunsberger The Division of Developmental Disabilities’ (DDD) service system has typically placed more emphasis on adult residential care than on young adults who were aging out of the education system. This lack of transition-to-adult-life planning has often left families with few options. In 2002, DDD began shifting service delivery away from group homes and toward providing supports and services geared to individual needs. This effort, called Real Life Choices, is being expanded county-by-county. And now the state is addressing the unmet needs of students transitioning into adult life. Lorraine D’Sylva-Lee began working as Director of Transition in August 2004 through a DDD contract with the Family Support Center of New Jersey. D’Sylva-Lee is a parent of a child with developmental disabilities and a public member of the NJ Council on Developmental Disabilities. That October, four months after the 2004 graduation, the division contacted all DDD-eligible students whose twenty-first birthday took place that year too offer them and their families a series of information and education sessions. “That was the first year that money ($5 million) was specifically allocated toward transition,” said D’Sylva-Lee. “We served all 2004 graduates with something, whether that was providing them with information and connecting them to the Division of Vocational Rehabilitation Services (DVRS) or finding them traditional or nontraditional services.” Real Life Choices is the nontraditional option, while day programs are the traditional option. The first time families ever had the option of Real Life Choices for transition was in 2004. Twenty-one individuals moved forward with Real Life Choices for transition that year. Currently, two efforts are available under the name Real Life Choices. The first was the effort started in 2002 with individuals on DDD’s priority waiting list. It addresses more than just transition needs. Real Life Choices for those individuals transitioning from school to adult life, however, is a statewide option that looks specifically at the day activity portion of a person’s life. After sending out invitation letters to students and their families, D’Sylva-Lee began doing statewide orientation regarding these changes. “Some of the families we worked with in 2004 were in desperate situations. Some were just looking for day programs. We expanded the day programs by 125 slots in 2004. This is the traditional option. The efforts that the division has going on around transition doesn’t just cover Real Life Choices. It also looks at expanding existing contracts where they are able to expand. It’s both traditional and nontraditional.” D’Sylva-Lee said offering more options was a new concept to most families. It was the first time they heard about self-direction and utilizing individualized budgets for their children. Some brought their children with them to the sessions, while others chose not to. After the initial orientation session, families attended statewide follow-up sessions presented by the Boggs Center where they learned to develop Essential Lifestyle Plans (ELPs), a planning tool that the division uses to help individuals and families develop descriptions of support needs. DDD connected these families with a support coordinator who helped them form the ELP. Families held planning discussions in small groups and individual sessions. “You need a current snapshot of who the individual is before looking at what supports they need and how those should be provided. When the plan is developed, the coordinators continue to work with families, identifying supports and services, and deciding how they’ll be provided within the budget.” From the 2004 sessions, the division discovered that more families participated in evening sessions, so they held all 2005 sessions in the evening. In 2005, the Division reached out six months before students aged out. “Each year, we reach out to them earlier and try to give them as much planning time as possible.” DDD also broadened the topics presented in the information and education sessions. In 2005, they included a Benefits and Financial Planning Session. Representatives from the Social Security Administration talked about benefits and provided names of contacts. Community Health Law Project representatives talked about special needs trusts and helped families to understand the financial issues that affect adults with disabilities. Families received attorney referral lists. “The goal was to inform and educate people so they could make informed choices,” said D’Sylva-Lee. DDD provided a Traditional Program Session with DDD day program coordinators in 2005, and partnered with DVRS to present Supported Employment sessions throughout the state. Real Life Choices and self-direction were also presented at those joint sessions. The planning for the 2006 target group started in 2005. “DDD cannot do this in isolation. Partnerships and collaborations are needed. Families told us they wished they knew about this while their children were still being educated,” D’Sylva-Lee said. Therefore, the Boggs Center formed an inter-agency group with DDD, DVRS, the Division of Disability Services (DDS), and the Department of Education. They began meeting monthly in February 2005, with families, teachers and provider agencies also attending. Out of these meetings came Pathways to Adult Life, the name for DDD’s transition efforts. This year, the division is contacting students one to two years prior to their aging out of the education system. They are now working with both 2006 and 2007 graduates. D’Sylva-Lee said families typically are unaware of the roles of the school districts and DVRS, as well as DDD’s new initiatives. In October and November 2005, DDD provided a broad overview of adult services and contact information to parents. The Department of Education (DOE) has taken the lead in presenting this same information to school district personnel. DOE presented sessions explaining which steps toward transition should be happening at school and discussed how they could assist parents. The DVRS sessions include information on when parents and schools should contact them for assistance, and DDS representatives explain their Workability program, which allows some workers with permanent disabilities to receive New Jersey Medicaid benefits even if their earnings are more than allowed under federal Medicaid guidelines. More invitation-only sessions took place this spring. Next year, Pathways to Adult Life hopes to be able to develop an even broader structure that includes providers and others with an interest in transition. They hope to be part of county-based information sessions. County sessions would not be limited to a specific graduating year. “These students have such tremendous capabilities. So many families were not looking for a day program and wanted more. And there are still many families hanging on for day programs. We are presenting the options to people so they can consider all the information and decide which path to take,” D’Sylva-Lee said. Mom Gets to Wear a Different Hat by Maryann B. Hunsberger Families who prefer the traditional option of Pathways to Adult Life—a new state effort to help students with disabilities transition to adulthood—often do so because their adult children have more severe disabilities. Through Pathways, they can explore all the options before making their choice. Once they do decide the state Division of Developmental Disabilities (DDD) helps find day activities. Mindy Norlian of Cherry Hill chose the traditional option for her daughter, Rebecca (Becky), 22. Becky has multiple disabilities, is nonverbal and displays autistic characteristics. Becky’s diagnosis came from Children’s Hospital when she was one year old, after she missed several milestones. From ages 8 to 21 she attended Larc School in Bellmawr, where Norlian is an active volunteer. During Becky’s formative years, Norlian developed a home-based invitation and calligraphy business so she could be home with Becky and her sister Allison (Alli) who is now 16 years old. She divorced along the way, making the income she earned from home-based work even more important. Yet, with Becky approaching 21, Norlian hoped she could get back to teaching. As Becky neared graduation, Norlian attended six training sessions with Pathways and began to explore the possibilities offered through Real Life Choices. “Each training session was a little different. Six families came and some brought their children, so I brought Becky to the last couple sessions. They showed us films and talked about options,” said Norlian. Before the sessions, Norlian wrote a paper called, “A Day in the Life of Becky,” which explained her likes and dislikes. “It talks about everyday things like her favorite songs, her favorite foods. I bring this whenever she goes for out-of-home respite.” DDD’s transition sessions expanded on this. “The DDD workers let me make my own decisions and include Becky. It was helpful to put down on paper things I had never thought about. It put things in perspective and showed me that I needed a traditional program for Becky. I wanted her to be in a safe place on a regular basis where she could enjoy herself. I realized that Becky won’t be able to bag at Shop Rite or go to an occupational training center, so that’s why the traditional day program was right. “Through these sessions, we made a whole book about Becky. It explains what she likes, what she does and who everyone in her life is. Anyone who cares for her will know about her in depth.” Norlian visited several day programs before choosing one. “By going to see these places, I got to see everything available and learn which program was the most appropriate.” DDD, Norlian and Becky agreed that Larc’s day program was best. Most of the other attendees are young adults like Becky. Consistency and routine are necessary for Becky, so Norlian felt she would be comfortable at Larc because it is familiar. “Taking her away from a regular routine upsets her. Even getting a new student on the bus can upset her, so I didn’t want to change her world too much. She still had to adjust to this program, although it’s on the same campus, but the adjustment was easier.” Since Becky has been attending Larc’s day program, Norlian has resumed working outside the home. She works as an educational assistant with students with disabilities in the public school district. “Now that she has somewhere to go all day, it’s possible for me to do this. Her day program is a longer day than school was, so I can work a full day.” At LARC, the young adults take part in various activities. They make crafts, bake cookies and other desserts, go on field trips to the mall, go out to lunch and to the movies. Since she has aged out of the school system, she no longer gets occupational, physical or speech therapy. “Larc works to meet the goals in Becky’s IHP (Individualized Habilitation Plan). They have a mini apartment at Larc where they work on independent living skills, such as making beds, cleaning up and folding clothes. Some of these kids will eventually live in a group home, so they need to learn how to clean up. Some learn to use a washer and dryer. Becky learned how to pick up her plate and put it in the sink. I was surprised when she started to put her plate in the sink after dinner!” Becky has made friends at the day program and enjoys being with them each day and at after-hours activities, such as at the prom they hold each May. “Becky loves it. The kids get all dressed up in tuxes and long dresses and wear corsages. Some even come in limos.” It’s important to Norlian that her daughter experience typical, age-appropriate activities. For this reason, she had Bat Mitzvah and Sweet 16 parties for Becky. “She’s a disabled young Jewish woman who deserved this. She is no different from anyone else’s child and needs to have the same life experiences. Once a week, she attended classes through Jewish Family Services. She learned songs and made Jewish decorations. She couldn’t say the prayers at the Bat Mitzvah or read from the Torah, but she could sing some of the Hebrew songs and the rabbi blessed her. There wasn’t a dry eye in the whole place. The rabbi said this was the holiest Bat Mitzvah of all the ones he has done. Friends came back to the house afterward. I believe she understood everything that day. If I show her the tape of the day, she can say ‘Bat Mitzvah,’ even though she can’t say too many words.” Becky likes many things that other young women her age enjoy, such as watching videos, listening to Beatles music, hanging out in her room and dancing. She enjoys going to restaurants and malls. She likes having her nails polished, having her hair brushed and wearing body spray. When her mother forgets the body spray, Becky hands it to her. She also enjoys looking through books. “I believe she can read, as she can point to flashcards and identify the correct word.” Now that Becky is a young adult, her mother is thinking even more about her future. “Alli offered to take care of Becky when she grows up. Alli is great with Becky. She watches her, changes her diapers, and does whatever Becky needs. However, I don’t want her whole life to be taking care of her sister. I want her to have a life and have her own children. All I ask is that she check in on her and spend time with her if something happens to me.” To get Becky used to being without her mother, Norlian takes her to a respite home, Tuckahoe House in Williamstown. They have a 24-hour staff, and Becky goes there when her mother travels. “Going there gives her an opportunity to know what it’s like to be away from me. The first time I took her, I realized that the real test would be how she would do if she went back a second time. When she went back, she ran in as though she was happy to be there. It made me feel much better, but it made me realize that I have to figure out where Becky will live when I get older. It’s nerve wracking to know I’ll have to place Becky into a residential program one day. “I now know that I need to have some say in where Becky will live when I get older. Inside of her, I believe there is a young woman who wants to leave mom some day, even though she acts like a child on the outside. She still wants some independence from mom.” Norlian can’t imagine what life would be like if Pathways hadn’t helped her to place Becky in the right day program. “Oh my God, it would be difficult. I couldn’t work outside the home and that would be difficult financially. It would be difficult emotionally to never be able to get out of the house. I don’t mind being home with my kids, but 24 hours of caring for someone every day would be hard. I have no problem caring for her, but we all need a break. We all need a chance to put a different hat on our heads. “Becky is happy, safe and learning. I don’t worry at all. If she were home, she’d be bored and I’d be worrying about her not having anything to do. She wouldn’t get the social stimulation that she does at Larc, since she doesn’t have friends in the neighborhood. What young adult wants to hang out with their mom all the time anyway?” Norlian feels it is sad that at 21, the school district no longer works with special needs adults. She wishes there were more programs for all young adults with disabilities. “Some parents have to quit their jobs when their children graduate. I’ve seen disabled kids in nursing homes because there is nowhere they can go. It all comes down to the state’s need for funding, and funding cuts always happen. I think DDD’s transition options are good. The meetings and sessions let parents know what is available for their child. I think it’s good that they have both the traditional and the Real Life Choices options, so parents can choose. This day program has been my savior.” Creating Prosperous Futures: The Success of Savings Program by Fay Reiter “Does anyone know what an ATM machine is?” Sherri LaRouche asked a group of young adults one evening at a class held at the Freehold Branch of the Provident Bank. All twenty-three of the eager students listened attentively as she explained how to operate the machine. This was the first session of Success of Saving: Project American Dream, a program sponsored by Allies, Inc., that helps people with disabilities and low income learn how to save money and build assets. LaRouche, assistant vice-president of the bank, is one of the instructors. Allies, a non-profit provider of supports and services for people with disabilities, works with community-based financial organizations like Provident to set up accounts and explain bank services. The free program is designed to help participants develop a savings goal and create a monthly savings plan. Participants toured the branch and learned how to cash and deposit checks, how to use a drive through window, the uses of coin machines and safe deposit boxes, and how other banking services could work for them. Participants are required to be employed at least twenty hours a week. They receive membership in the unique saving club where each dollar they contribute is matched by 2 dollars. At the end of the eight-month period, each participant receives the matched funds along with their savings account funds, which are applied toward their savings goal. Club participants can save up to $500 with a maximum match of up to $1,000. “I love the Success of Savings Program because it teaches financial literacy and empowers people to work and save,” said Liz Aquino-Rossi, acting director of the program. According to Dennis Rizzo, planner and contract manager for the New Jersey Council on Developmental Disabilities—which provided initial funding for the program and still supports it through a grant—Individual Development Accounts (IDA’s) were originally established for people on Temporary Assistance for Needy Families (TANF). The IDA allowed TANF recipients to put a certain amount of earnings in special savings account without the treat of losing their public assistance benefits. “We established the program with Allies on the basic premise that people who rely on the public support system have cycles of dependency that prohibit them from learning the personal financial skills that most of us take for granted,” said Rizzo. “Many didn’t know how to write a check or balance a checkbook. As a result, it is hard for them to even envision building a financial base. Like many people living on very low incomes their lives are geared from monthly check to monthly check. “In this program, we are getting people with developmental disabilities that are working and giving them the opportunity to begin to save and learn about personal finance,” Rizzo said. The Success of Savings program is a step toward the full Individual Development Account program, the next phase that would enable someone to save for education, a home or condominium. Allies has been approved for federal matching funds for a full IDA program. Jenny Romero, a 33-year-old resident of Maplewood, is a graduate of last year’s SOS program, held in collaboration with Sovereign Bank. “I joined the club because I wanted to save money,” Romero said. “I couldn’t put a lot of money in the bank because my Social Security entitlement limits me to saving up to $1,500. This program allows me to save additional money without penalty.” Romero is thrilled that so far she has saved $375, which will be matched by $2 for every dollar she has saved. “The Success of Savings program was a really great experience for me. It taught me how to budget and save money. I am hoping to save enough money so that in the future, I can purchase a house. With the help of the savings club, my dream of home ownership is now possible.” Romero, who has cerebral palsy, is a Research and Development Associate for Family Intervention Services, a non-profit organization that provides counseling for families in need. She has her own apartment and drives to work every day. Previously, she lived in a nursing home, but thanks to Allies she was able move out and live on her own. “Allies helped make me feel that I was capable of living a normal life. I always refer to Allies as my wings because they have given me so much freedom to fly and explore Thanks to them, I now have hope.” Matthew Sasnow, a 20-year-old Freehold resident, is looking forward to participating in the Provident Bank series. Sasnow works part-time as a greeter at Wal-Mart and would like to save up for a trip to Las Vegas. To that end, he has set a goal of saving $500 dollars. Sasnow ‘s mother, Sheila, is excited about him having the opportunity to learn how to save money and go to the bank on his own. She believes the program will help him become more independent and assist him in his transition to adult life. “I think it is great that we have already learned about depositing coins into a coin machine,” said Sasnow’s mom. “I have a lot of coins that I am planning to take for deposit, and I am looking forward to the next session where Matthew will learn to fill out a deposit slip on his own.” Maria Romano, vice-president and regional sales manager for Provident Bank, is excited about offering the program. “We are a community-based bank and we see this as a good opportunity to partner with Allies and reach out to the community.” Allies is currently offering the Success of Savings program in Middlesex, Monmouth and Mercer Counties. For more information about the Success of Savings program go to www.alliesnj.org. Fighting an Equal Opportunity Disease It is a quiet Friday afternoon at The Arc of Monmouth County in Tinton Falls – the ideal atmosphere for Nancy Razza, a local clinical psychologist, to facilitate her small support group in the library overlooking the grassy courtyard. Today, the gathering sits in six chairs in a loose circle. Razza and two doctoral students begin their weekly, hour-long session with three middle-aged men. The three have diverse backgrounds, but one thing in common: they all have mental disabilities and substance abuse problems. "People with developmental disabilities never have an easy time integrating themselves in community services, where they can benefit from 12-step programs such as Alcoholics Anonymous," Razza says. "They don’t often have social skills and don’t have transportation. That is why we hold the support groups here." On this particular Friday, one participant named George slumps forward in his chair, arms folded. He’s lamenting, worried about a 70-year-old friend who had worked with him at ShopRite. She’s now in the final stages of cancer. He exchanges glances with Rob as they admit they "fell down a few times" during Rob’s Super Bowl party, comprising just the two of them. Meanwhile, Jim admits to the group that he placed his hand on the shoulder of his job coach, inadvertently making her feel uncomfortable. "I expressed my feelings and I realized I did things I didn’t mean to do," Jim says. "I’m a good person. That’s why I joined this group. I apologized and I know I was wrong. I asked her to forgive me." "We were very proud of you for doing that Jim," Razza tells him. Jim lets out a deep sigh of relief. He rubs his hands together as he smiles and says "Thank you." "You’ve learned from your mistakes," Razza reassures him. This program, similar to the components of Alcoholics Anonymous, is one of many such support groups across the state serving people with disabilities with alcohol or drug dependency. These programs pull from an annual $350,000 pot, which former Gov. Christie Whitman created in 1996 to assist this specific population. This special funding was set-aside through the "Alcohol and Drug Abuse Program for the Deaf, Hard of Hearing and Disabled." The 10-year-old law provided for the first set-aside in the nation to spend $350,000 annually for substance abuse services for people with disabilities. This ground-breaking legislation was the result of a grassroots advocacy effort of nearly 15 years, according to the National Association of Alcohol, Drugs and Disability (NAADD), which led the charge. It was considered a victory for advocates across the country who had been working to provide alcohol and drug prevention and treatment services to people with disabilities for more than two decades, NAADD officials say. A total of $350,000 in state and federal funds have been earmarked in State Fiscal Year 2006 to help people with disabilities and those who are deaf or hard of hearing work through their substance problems. Funds are used for intensive inpatient and outpatient treatment, education, case management, mobile counseling, advocacy, prevention and other family services. The legislation called for the establishment of a Program Advisory Committee to advise the Commissioner. This committee, the Commissioners Advisory Committee on the Deaf, Hard of Hearing and Disabled, advises state Division of Addiction Services (DAS) on the utilization of funding. James W. Smith Jr., Acting Director of DAS, says New Jersey "appears to be a national model" in its approach to serving people with disabilities with addictions. "Governors and commissioners, since the passing of the legislation, have taken this issue seriously," Smith says. "Other states say they can’t discriminate against the disabled. That is very different from being proactive, which is what we are doing here in New Jersey. Even though we’ve made progress in this area, there is still a lot of work to be done." "Addiction is prevalent across a wide spectrum," he adds. "What we know from research is that patients integrating with other patients have the best chance for success." The Other Fund In addition, the state has earmarked $2.8 million to upgrade facilities across the state, making it possible for people with disabilities to physically access buildings that host addiction treatment programs, thus making it possible for licensed agencies to accommodate and treat people who are deaf, hard of hearing or have other disabilities. As of the end of March, $2.1 million of the $2.8 million fund has been spent. Specifically, the money has been used to ensure facilities are barrier-free, address life safety issues and fully comply with the federal Americans with Disabilities Act, according to Ellen Lovejoy, a spokeswoman for the state Department of Human Services. (Ed. Note—at press time for this issue the department had announced it was reevaluating these funding awards due to possible irregularities in the bid process. Families magazine decided to hold our story on these projects until our next issue so we could provide our readers with an accurate account of the status of these important upgrades.) Lovejoy notes the $2.8 million expense is a one-time budget, while the department, under state law, must earmark at least $350,000 to fund addiction service programs each year, as part of a law signed Jan. 5, 1996. "This state has taken this population very seriously," Smith adds. "I recently had a conversation with (state Department of Human Services) Commissioner (Kevin) Ryan about how serious and important it is to maintain this commitment. Addiction counseling is a specialized area of expertise. "The hearing impaired, the visually impaired and the disabled are not able to get the services they need by a general counselor because of the specialty of their addiction," he says. "We are dealing with two things: the expertise needed to provide addiction treatment coupled with professionals who have the knowledge and background to service the disabled." Services The earmarked dollars went to four agencies throughout the state for the following services: mobile treatment and case management for the deaf and hard of hearing; interpreter services, including eight weekly 12- step meetings; detox interpreting, classes to educate students about working with people who are deaf and hard of hearing; and client life skill services. Steve Shevlin, Executive Director of Signs of Sobriety (SOS), one of the contract recipients from the earmarked funds, says SOS services the entire state, noting it also receives funding from the United Way and Mercer County. He said no other organization in New Jersey exclusively provides addiction services to people who are deaf or hard of hearing. "We provide educational services to organizations about the needs of deaf or hard of hearing individuals," he says. "We also provide interpreting programs and captioning services to clients who need detox and after care, such as 12-step programs. We also provide treatment and counseling on a one-on-one basis and in group sessions. " NJ Leads Nation Several other states have made efforts to open treatment doors to people with disabilities. As early as 1991, Massachusetts, California and other states began developing partnerships between their state substance abuse agencies and advisory bodies of disability experts, according to NAADD. NAADD has worked to make this a nationwide issue. The group banded together in 1996 to form a broad-based coalition to educate constituents about the prevalence of substance abuse among people with disabilities and to lend support to advocate for local, state and national policies. In the early 1990s, the federal government began taking steps to address the problem. The Substance Abuse Mental Health Services Administration’s Center for Substance Abuse Prevention began funding projects, convened disability forums and assembled a Disability Workgroup. Since 1992, the U.S. Department of Education’s National Institute on Disability Rehabilitation and Research (NIDRR) has funded a Research and Training Center on Drug Abuse and Disability, housed at Wright State University in Dayton, Ohio. The Knot that Never
Goes Away It’s difficult for
parents of children with disabilities to find appropriate health care
for their children. Between inadequate transportation, high medical
costs and doctors who don’t take Medicaid, some children with
disabilities can’t access the health care they need. When a child with a
disability has more than one type of diagnosis, or when doctors aren’t
sure of a correct diagnosis, it can be even harder. “The OCD and Tourette’s were the latest diagnoses. It is very frustrating to get all these different diagnoses, because nobody seems sure of exactly what he has.” Flagg, who lives with Adam and her husband Arthur in Sicklerville, feels that without one specific diagnosis, it’s hard to treat an individual. “If we knew exactly what disability he has, we could help him progress. Without knowing his correct diagnosis, it leaves us wondering what we can do to help him be more functional.” One key to finding a correct diagnosis, Flagg feels, would be to remove her son from all medication and evaluate him when his behavior is not changed by prescription drugs. “Off his medicine, the disability would be easier to diagnose. The doctors could find out which medicine would work best that way. He is on antipsychotic and antidepressant medicines that make him tired and controlled each time doctors evaluate him.” Flagg knows that her son can’t stop his medication while at home, so she has tried to find care for him at a facility that admits patients with dual diagnoses, removes them from medication and evaluates them. “There aren’t many facilities like that. That’s a big problem. At a typical mental hospital, a person with developmental disabilities is mixed in with people who are drug addicted or psychotic. My son is very trusting and less independent. They could take Adam’s money or hurt him.” Flagg did find one facility that she feels would be good for Adam, Shipley House in Mount Laurel. Their specialty is reevaluating individuals after removing them from medication. However, the facility is near a main road and Adam’s psychiatrist, who is not affiliated with the hospital, fears that he might wander off and a car might strike him. The facility also has a long waiting list. Flagg has found no other facilities like Shipley House. Adam went into crisis in July after his great-grandmother and two of his friends died. At that time, his mother took him to Kennedy Hospital’s Crisis Center. Kennedy was unable to deal with Adam, so they sent him to Trinitas Hospital. Trinitas kept Adam for eight days of group and individual counseling. “They didn’t remove his medication, reevaluate him or recommend a long-term plan other than counseling. They sent him home with his medications doubled. The only other choice was Ancora Hospital, where they would mix him in with criminally insane people. I don’t want him around violent people, because they could harm him.” Adam previously saw a psychiatrist at the University of Medicine and Dentistry at New Jersey (UMDNJ), but he changed physicians. “UMDNJ’s hours are limited. If it’s past 5 PM, you can’t see anyone. That’s why I needed to find him another doctor. He needs more choices than that. I like the new doctor, Dr. Ted Kastner. I feel like I’m not limited now to whichever doctor takes Medicaid, also. We had to switch HMOs so that he could see Dr. Kastner. This meant he could no longer see the primary care physician who has cared for him since he was a young boy. The choices are just so limited in general when you have a child with developmental disabilities who has mental health symptoms.” Even though the family has insurance for Adam, co-pays are high. “One of his medicines alone has a $120 co-pay, and he takes three. The real kick is that my husband works 60 hours a week to pay for these medicines because I stay home to care for Adam in case he goes into crisis, gets sick or his bus doesn’t come on time. I couldn’t work full time and not know what is going on with him. Until Adam’s life is squared away, I won’t have a life of my own.” Adam attends a program at the Abilities Center of Southern New Jersey on Mondays and Fridays. The Abilities Center—which, according to its website “provides employment, job-training and educational services for people with disabilities and other disadvantages”—helped Adam to find part time work at Wawa, doing janitorial work, such as stocking shelves, emptying trash and cleaning coffee spills. “He likes his job, but he wants to work at Lowe’s or Home Depot so he can make locks. Every week when he is paid, we go to one of those stores to shop and look at the keys. He loves any stores that have home supplies. They are like playgrounds for him.” Adam tried to find employment at Lowe’s. He registered with Jewish Family Services, who took him for an interview. “The interviewer had no understanding of people with disabilities and Adam wasn’t prepared enough with answers. When the interviewer asked why he wanted to work at Lowe’s, he said because he didn’t want to work at the Abilities Center. He didn’t get the job, of course! Just after that, Adam went into crisis and we put things on hold.” Flagg said Adam’s career choices are as limited as his psychiatric care choices. “He’s just been pretty much put into whatever job is available, rather than having someone work with him to maximize his potential and find out what he really wants to do with his life.” Adam and his mother both attended Partners in Policymaking in an attempt to maximize his possibilities. She described it as an eye-opening experience. “It made me see how I had limited my son’s potential. I saw that I was holding him back in ways, and I realized that others have such limited expectations of him. “He’d be happier, less stressed out and less in crisis if someone evaluated his likes and dislikes and helped him find what he wants to do with his life. Right now, he really doesn’t know what he wants to do other than making keys, and so far, he hasn’t been able to get into that work. Adam can put anything together by looking at a picture. He’s bright, yet he’s putting out trash for a living.” Adam’s case manager at DDD has referred him for placement, probably in a group home, and then into a shared apartment. “I’d love to see him getting married some day. He wants to marry and have children. He wanted to marry his last girlfriend, but it didn’t work out.” Adam’s last relationship ended when he went into crisis last summer. “Her father was scared by his going into crisis. I can’t blame him.” When Adam goes into crisis, he bites himself, punches himself in the face, says he will run in front of a car, tries to put his hand through the window glass, hits his stepfather, and has even taken swings at Flagg. When she tries to restrain him from putting his hand through the window, it escalates the situation. Adam went into crisis again right before Christmas. Flagg called the police and informed them that the situation involved a psychiatric crisis in a person with a developmental disability. When the police came, Adam ran outside. “He got in the cop’s face and tried to push me in the house. The cop threw him on the ground and sprayed Mace in his eyes. I yelled at the police officer and asked why he would Mace someone with a disability. They said they had to do that to prevent him from harming me or running into the street. I think there is a lack of sensitivity training with public agencies. There is a discrepancy between the rights of people with disabilities and what society knows about their rights. “The situation with the police broke my heart. I was so distraught. It not only scares him when something like this happens, but it puts friction in our relationship when I have to call the police. But, that is what our case manager tells us to do, because that is all we can do.” Adam’s mother feels that adequate medical care for his disabilities would prevent most of his life’s problems. “If there were concrete treatment for Adam to learn to deal with his frustrations and emotions, it would be different. I think he could also be in a better job. He would probably still have his girlfriend and be planning for marriage. He would feel better about himself. He could be more stable and not get upset over every loud noise, someone looking at him the wrong way or violence on TV. Anything can set him off. The knot in my stomach never goes away. “It’s so frustrating. All you get when you look for answers are dead ends. The bureaucracy has changed in favor of people with disabilities, but not enough. I’m Adam’s advocate. I have to be. I won’t allow him to fall through the cracks anymore. If it takes until the day I die, Adam will have the life he deserves. The population of people with disabilities deserves more. And we can’t give up on them.” News from the CouncilsRFSPC #1PO Box 13Pompton Plains, NJ 07444Sussex, Warren, MorrisNo update available. Meets the third Tuesday of each month at Morristown Memorial Hospital, 100 Madison Ave., Level B, Conference Rm. #2, Morristown, NJ 07962 from 7:00 PM to 9:00 PM. RFSPC #2PO Box 4242Clifton, NJ 07012http://www.angeltowns.com/town/rfspc2/
Passaic, Bergen,
Hudson
|
||
FAMILY SUPPORT