CLAUDIA JUNGHANS, ROB LAST

„Hey, I reached adulthood, now what?“

Adults who have CHARGE syndrome talking about school, job, living and independence

CHARGE Syndrom e.V. CHARGE Syndrome Association of Australasia Ltd FOREWORD

We know a lot about CHARGE Syndrome but what do we know about the process of changing from one set- ting to another; from home to school, school to post school, home to living away from home?

CHARGE Syndrom e.V. (Germany) and the CHARGE Syn- drome Association of Australasia (Australia and New Zealand) have collaborated to create this booklet focus- sing on some of the issues that arise in the adult years for people with CHARGE syndrome.

These can be the times when big changes occur, which can prove to be challenging, whether it be changing from home to school, school to employment­ or moving into independent or supported ­accommodation. They require careful consideration, forward planning, supportive environments, collaboration and teamwork.

We decided to focus on the adults who have ­CHARGE Syndrome as we found there’s not much information out there. We gathered the information from those who live it, from those who have CHARGE Syndrome.

The questions we asked came from the areas of school, job, living and indepen- dence. We wanted to hear about the school years, if they work and what kind of work they do, do they live at home or are they able to live away from home, and is that independently or with friends or is it in a supported living arrange- ment and what are their dreams for the future? We also thought it was important to hear about the challenges in achieving these goals and to offer thoughts and ideas to parents on planning for these times. We sent the questions to a range of adults, who have CHARGE­syndrome, from all over the world. They came back with their responses, which is the basis for this booklet.

3 Some of the stories are written by themselves and some are written by their VITA parents or in collaboration with their parents.

This booklet should give you a brief overview to show you the way it might be Claudia Junghans and also what it takes to get there. 1. President CHARGE Group Germany

We are very grateful to all those who participated and their parents. Claudia is the first president of the German CHARGE family support group and To Elke Ludwig for creating the publication, to Sandra Noorlander for the trans- mother of a 2004 born son with CHARGE syndrome. lations and editing support. And of course, for those who enabled this project She, her husband and Julia Benstz (a mother with a girl with ­CHARGE ­syndrome) through their generous sponsorship. formed the CHARGE Syndrom e.V. in Germany in 2006. She regularly lectures on the CHARGE syndrome from the point of a view of For us it has been a wonderful collaboration from the Northern Hemisphere to an affected mother. She also heads the office of the German CHARGE group, the Southern Hemisphere, via the wonders of technology. organizes the German CHARGE conferences and edits the ­German Newsletter “Trommelwirbel”. Claudia Junghans Rob Last AM Rob Last AM Vice President CHARGE Syndrome Association of ­Australasia

Rob comes from an education background, specifically as a teacher of the deaf and as an Early Childhood Educator. He and a group of parents formed the CHARGE Syndrome Association of ­Australasia in the late 1980’s. Since 1993 he has been a presenter at the USA ­conferences as well as the Australasian CHARGE syndrome ­conferences and since 2012 the German conferences. His most recent achievement has been as a participant in the ­­„Understanding CHARGE Syndrome“ a free online course. He encourages anyone with an interest and/or an involvement in CHARGE syndrome to complete this course.It comes highly recommended.

Understanding CHARGE Syndrome – free online course https://understandingchargesyndrome.org/ Offering quality education on the latest knowledge and research ­on ­­­CHARGE syndrome from the world’s foremost experts in the field. It will significantly ­raise awareness of CHARGE syndrome amongst health and educational profes- sionals and will strengthen the capacity of families and care givers in ­supporting individuals with CHARGE syndrome.

4 5 secondary school education. Living Tell us about a typical week for you 37 YEARS Before you finished school, what I live with my mother. I would like to and what you like most. Belinda was your future plan for work and a move out into an apartment in the I work full time and study part time place to live? next few years closer to the city. online. I also try to go to the gym a few AUSTRALIA AUSTRALIA I´m not really sure what I wanted to do I want to live closer to the city becau- times during the week. I see friends when I was at school. se the public transport is better. sometimes on the weekend.

What have been the rewards since Job leaving school and what have been Whilst I was at school, I did work ex- the challenges? perience at a child care centre and at It was very hard to get my first full a I.T. place. I got orientation and mo- time job but I believe because I have billity on how to get there. It was very one it will be easier in the future. helpful. I got my first paid job at 15 at a music store. The owner was nice to What are your dreams for the ­future? give me a job 1 hour a week to dust I want to be a lawyer and help peop- the shelves. I also worked at K-Mart le. I want to live independently and be from about age 17-20 part time. happy.

Since leaving school, what are some School of the things you have been doing, I went to a mainstream school for both such as further training, paid or primary and secondary. At schooI I volunteer work, social and recreati- Independence received a one on one aid in the clas- onal activities etc.? I am very independent with travel- sroom for taking notes as I could not I have studied bachelor of Arts and am ling and going to appointments and read the blackboard. I also had visiting just returning to university to study shopping. The things I need more help teachers for blind and deaf students Law. I have worked with Victoria Po- with, are cooking and household tasks about once a week or fortnight. My lice doing administration work for 11 such as cleaning. main challenges at school were rea- years. I’ve also done a lot of volunteer I use a cane for awareness in busy pla- ding the blackboard. I also had orien- work with a legal centre and at the ces. And I use my mobile phone to en- tation and mobility when I first star- court. large signs and screens. ted high school and when I did work I currently work full time for Victoria experience. I also used a monocular to Police. I do administration type work Other questions: see the board. on the computer. I use windows zoom How do you stay in contact with to make the screen big. I now want to friends and how do you access your I finished Year 12 and received my VCE. be a lawyer. community? This is the Victorian College of Educa- I did have job trainings from an emplo- Just like most people. I go to the gym, tion, a certificate students receive on yment service but found my current stay in contact with people through the satisfactory completion of their job and applied on my own. phone/facebook.

6 7 being behind the rest of the class and day programme when other things are different places. In the afternoons and 37 YEARS sometimes the teachers aid wouldn’t not stopping me. evenings, I like to go on Facebook, talk Ellen turn up to support me in the class. A typical week for me is I go to my to friends and read. I am also a part of I finished year 12 achieving the Higher work packaging and labelling. Tuesday,­ the CHARGE Syndrome Association of AUSTRALIA AUSTRALIA School Certificate (HSC). Thursday and Friday I am at my life Australasia. I enjoy this and plan meet skills programme where I do exercises, ups with families in my area. budgeting and I work on my blog. On I enjoy all the things I do but the most Job Thursdays I go swimming with a group challenging part is that a lot of my After leaving school I wanted to do of the clients and staff and ­Friday I ­friends live far away so it’s hard to see floristry at a technical college, but this usually go out. We go anywhere and them often. didn’t work out because I am a wheel- everywhere. On the weekends, if I am chair user and it was inconvenient for not in respite, I have a carer once a And for the future I want to keep doing them. fortnight to take me out on a Saturday what I am doing. I now work in supported employment, to see friends, shop, whatever I want. I do things like packaging and labelling. The rest of the time I am with mum, I also attend a life skills program three we see family and friends and go to days a week. I work on goals and in- teract with friends and staff. I go to respite once a month and on every se- cond Saturday I have a support worker to take me wherever I want to go. I didn’t receive any support in getting a job.

Living I live at home with mum and our two School cats. My first school was for students with My plan was always to live with mum. physical disabilities. From there I went I want to continue to live at home with to a special support unit in a main- mum or with friends and a carer. stream school. I was supported by an itinerant tea- cher of vision, a teacher of hearing, a Independence teacher and a teachers’ aid. My iPhone helps me to hear better by The challenges for me were frequent connecting via Bluetooth. hospitalisations, sometimes for quite I use Facebook messenger and Ins- long periods, therefore missing some tagram a lot. I also text and email. of the curriculum which resulted in me I go swimming once a week with my

8 9 When I enrolled at the school, the with physios, OTs and speech thera- 21 YEARS principal added Auslan to the curricu- pists on staff. An onsite gym and pool Sean lum six months before I started. When for therapy sessions. Technology and I started some of the children knew equipment for my vision and hearing AUSTRALIA AUSTRALIA sign language. needs (FM system, visiting teacher of the vision impaired). The class size I had a visiting teacher for hearing im- was smaller with more support wor- paired, called John. He came regularly kers in the classroom. I enjoyed go- during my early primary school years. ing to school by bus with my friends He also was my visiting teacher at high ­everyday. school. He only came once or twice a term at high school. I finished Special School with Certifica- In primary school I had a slant board, te II and II in Business (Victorian Certi- I had a visiting teacher for vision impai- a laptop, Clearnote (a remote camera ficate of Applied Learning). red. He came every couple of months that could be focused on the black- during primary school. board and displayed on my laptop), Challenges FM system with speakers, a micropho- At primary school it was hard to keep I had a physiotherapist called Kylie. She ne, a lapel mic that the teacher wore well and out of hospital. I had lots of came to the school regularly to give and that helped me hear their voice friends in primary school. In Year 6 I me exercises to do. Kylie was my PT better, a portable speaker to move to was co-school captain. throughout my primary school ­years. different classrooms. There was also a microphone that the other students Sometimes it was hard to know who Type of schools I had several occupational therapists used so I could hear their voices. was talking in the classroom. I went to a mainstream local childcare visit me at primary school. The OT centre and kindergarten before I star- worked with the Physio to give me High school was harder than primary Sometimes I got tired during the day ted school. exercises to do. school. In high school, there was a or had migraines. I went to a mainstream primary school separate learning centre for students from prep to Grade 6. I had several speech therapists visit with additional needs. I did not get In grade 6 I got a BAHA. My hearing I went to a mainstream high school me at primary school a couple of times much support in the classroom. I got improved a lot when I got it. from Year 7 to Year 9. a term and gave me exercises to do. more support in the learning centre I went to a special school for three and that I went to once or twice a week At high school, I went from small class a half years. Lyndal my aide would be with me for a few hours. The visiting teacher sizes to 30 students in a class. I had when the OT, physio or speech thera- for hearing impaired visited me once to make my way to different class- Supports pist visited me to learn the exercises a term. There was no Auslan support rooms carrying books and laptop. I At primary school I had a full time aide and help me do them during my time at high school. did not have enough support in the called Lyndal. Lyndal could sign. Lyn- at school. Kylie would draw pictures classroom. I did not feel supported by dal was with me all day every day. She of the exercises and they also provi- Special school was much easier than the teachers in the classroom at high always knew what was going on. She ded pictures and symbols to help me high school. The special school pro- school. It was hard to keep friendships knew when I wasn’t trying. ­remember what to do. vided lots of regular therapy support at high school.

10 11 At breaktimes it was hard to find The school helped me get some work impaired. I am learning to use machi- away tools, cleaning parts. The people ­friends because the playground was experience at the local Disability Sup- nery for woodworking. I am learning were nice. I did two hours every fort- so big. Sometimes I stayed in the port Coordination offices on the com- to use the machinery safely because night for three months. I would like to ­library. There were some kids I did puter and ­Occupational­Health & Safety I am vision impaired and my friends work there again. Friends helped me AUSTRALIA AUSTRALIA not get along with. High school was (OH&S) checking. at woodworking are vision impaired get this job. tiring. I did not like high school, I did too. I go there once a week and will I would like to get some work in a not want to go sometimes. I also trialled at a local factory packing finish in July 2020 having done three hardware store or supermarket. At special school, the curriculum did donated fruit and vegetables but the semesters. So far I have made chop- not really challenge me. There was not work area was very noisy and I did not ping boards, jewellery box, tool box, enough planning for transition to post feel safe moving around the factory coffee table, garden bench seat, and school options. The hardest thing for because the yellow lines were hard to a TV cabinet. After I finish in July, I can me was being around other students see on the concrete. go back once a week and do my own with disabilities. I was always the only projects. one with disabilities in a school until I also trialled at a local factory where I went to a special school. I did not they took apart electrical items for I go to gym twice week. Every now and know how to be around people in recycling. I liked this job, but the com- then I also go on outings with some wheelchairs. It did not take me long to pany closed not long after I began. I friends organised through a local day make ­friends with my friend Connor later looked at doing work experience service that my friends and I from the who is in a wheelchair and non verbal. at another factory but they would not special school are members of. I have We are best of mates now. I learnt a let me work in the recycling area pul- been to a boys afternoon in the park lot about disability and our school hel- ling apart the items. I wanted to work and an art work shop. Next year, we ped have a Changing Places toilet faci- ­there. will be doing cooking and going on a lity put in our local shopping centre. I camp. really enjoyed my time at the special I did some volunteering at school school and I am still friends with the helping the OH&S person check fire I would like to get a group together to Living students in my group. extinguishers around the school and do weekly swimming at the local pool. I live at home with my mum and dad. make sure they had all the correct in- I would like to go to TAFE and do a fur- I have a brother but he moved out a formation. niture making course or a carpentry few years ago. In the future I would My future plan before finishing course. like to buy my own home. I would like school My mum organised two days orienta- to try and find one with a sizable gara- To run a test and tag business. tion at the local council. I got to see Job ge for a workshop so I can do my own how the library works, how the coun- I do not have a job, but I do some jobs woodworking projects at home. Work experience cil chamber works, how food safety around the house to help. I put away The special school did not have a lot works in city council, how the parking the dishes and empty the dishwasher, Independence of luck getting work experience op- officers work. empty rubbish and recycling, sweep I began learning orientation and mo- portunities for me and my friends. I floors, I do my own laundry and chan- bility in grade 3. My O&M teacher was wanted to work at the local supermar- Since leaving school ge my bedding. called Darren and he understood my ket or hardware store or tool store but I left school in 2018. This year I have I did some work experience in a fac- needs because he had colobomas just they would not give me a trial. been going to woodworking for vision tory. I enjoyed sorting parts, clearing like me. He helped me learn to move

12 13 around the school ­safely and then we mobile phone to check where I was, communication devices because my world, watching Better Homes and progressed to local streets and road but I don’t use it anymore because I speech is not always clear, but I did Gardens and reading caravan magazi- crossings. O&M training slowed down know the route well. I always text my not continue using it. If someone can- nes and going to caravan shows. at high school, but I started to do it mother when I get on the train in the not understand me I either try saying AUSTRALIA AUSTRALIA again more regularly at special school. morning, when I arrive at woodwo- again clearly or I write it down. It is I love woodworking and enjoy the We learned to take buses and trains in rk and when I am leaving woodwork. quicker than a communication device. people. I love making the projects and our local area. I got to know the ticket I have my own house keys and can I don’t think I want one now. learning about the different tools and system. come home alone. Sometimes I text machinery. I want to work with wood my dad to pick me up from the station. I have my own bank account. I use a and make things. My big dream is to My family travelled on public trans- bank debit card for purchases. I am work in the caravan industry and buy port a lot because we live near a sta- I am independent with my tube fee- learning to use this correctly and to an old caravan and do it up myself. I’d tion. Travelling on trains was familiar ding. I wash and clean my own feeding check my bank account from time also like to move out of home one day. to me. tubing regularly and make sure they to time to make sure everything is Woodworking workshop is situated on are all working properly. I order my OK. I have my own healthcare card, the other side of the city to where I own consumables and formula. Every ­medicare card and proof of age card. live. I have to take a bus and two trains three months I email dietetics at the I am learning to budget for things I and walk about 1 km to the workshop. hospital and about 24 slabs get deli- want to buy. I get up at 5:30am to get there at vered a few days later and I organise I am tube fed and do not eat, but I like 8:30am. I leave home at 6:45am and them in the garage and in the cup- cooking. I also like making my own ice catch the 7:15am train. It takes about board inside when required. I also go cream. Ice cream is the only food I like 45 minutes to get to the city. It is peak to a bread shop near woodwork and to eat. I can measure and mix the in- hour at that time. I change platforms buy some bread for my family. gredients on my own. I can also help in the city and catch another train. It cook spaghetti Bolognese and banana takes 10mins to get to the last stati- I pick up my battery supplies from and coconut bread. on and then I walk to the workshop. Australian Hearing. I use a paper diary and a calendar to I know the safest place to cross the I am learning to organise some of my remember things and to know what ­roads. I have to cross a very busy medical appointments as I transition we are doing each week. road but I make sure I use the safest to adult care. ­crossing. I am learning to travel to appoint- Friends and Community ments by public transport. I stay in touch with family and ­friends It took me 6 months to learn to tra- on Facebook. It is easier to talk on vel independently to the workshop. I When I did my work experience I ­Facebook than make phone call. now travel there and back on my own practiced using an Uber. I booked the Some­times I do FaceTime with my every week. Sometimes, trains get Uber and travelled there on my own friend Sophie. I also see friends from cancelled or buses replace trains, but I twice. I had an orientation and mobi- time to time at the social group. I like know what to do now. lity worker help me practice using the seeing friends, I also like being on my Uber until I felt comfortable. own. I use an ID cane when I travel on my I use the public transport app to check I enjoy playing Lego, reading about own. I used to use the map app on my train and bus times. I have trialled trains and transport all around the

14 15 Since leaving school, what are some that frustrated us, and the office ma- (e.g. learning money skills, 30 YEARS of the things you have been doing, nager of the minister got me my job. ­budgeting, ­­cooking ­etc.)? Michael The head of the Human Resources Mobile phone, laptop, I can handle AUSTRIA such as further training, paid or vo- AUSTRIA lunteer work, social and recreational department was a really great person money, not so much cook though - ­­I School activities etc.? who did not reduce me to my appea- prefer to go out for meals. What type of school did you go to – After school I was at a place where I rance and behavior. special or mainstream school? What was trained to be an office manage- Other questions supports did you receive at school? ment assistant, I spent two years Living How do you stay in contact with What was challenging for you at ­there. I didn‘t like it, because they Where do you live now? ­friends and how do you access your school? didn‘t let me get any further, I wasn‘t I have lived in a small apartment close community? The school was a school for hearing suitable for an office, they said. to my mother since I was 18 years old. For example, catching up with impaired children, with six children per Then the Labor Market Service Did you or your family receive assi­s­ friends or going to see a movie to- class. There was one support person. I ­arranged a one-year vocational ori- tance to find a place to live? gether, or going to the gymnasium also attended the preschool class. The entation course for me with several No, my mom found this apartment for or swimming pool for exercise? biggest challenge was that there were internships. Gardener (couldn’t do it), me. I have my leisure assistant who is also not only hearing-impaired children in another office apprenticeship (they Where would you like to live in the my friend, we attend football matches, the class, but also children with beha- didn‘t want me there), kitchen in a future? go swimming, to aquafitness and vioral problems and so it was always facility for disabled people (which I Still in my apartment. postural fitness classes. I‘m also on quite loud. didn’t want). ­Facebook. Did you finish your education (up to They always underestimated me as Independence Tell us about a typical week for you Year 12 for example) and did you soon as I had introduced myself. What skills have you learned to and what you like most. receive a qualification? Then I got to do a course for office become independent, for example I go shopping on Monday, swimming I completed 9 years of school. organisation that included ECDL (Euro- shopping, travelling on public trans- on Tuesday, Wednesday too, fitness Before you finished school, what pean Computer Driving Licence) etc. port, medical appointments, house- on Thursday, Friday, Saturday and was your future plan for work and a Do you have a job, if so what do you hold tasks, and how did you learn to Sunday for a match or ice hockey, I col- place to live? do, if not what sort of work would do these things? lect football jerseys, have about 700 of My dream job was to work in an office. you like to do? Actually, everything is working well, I them. I write to the football clubs and I have had a 30-hour job at the Austri- need someone to come with me to doc- they usually send me some of their Job an Armed Forces for almost 10 years, tor‘s appointments, I have ­so­­­­meone stuff. Did you do any work experience, vo- in the Human Resources department. I who helps me with household­ chores­ What have been the rewards since lunteering or job training at school like it very much there. or shopping. Sometimes I need so­­m­­­­­ leaving school and what have been or when you left school? Did you or your family receive eone to help me communicate. the challenges? What sort of work did you do? ­assistance to find a job? What types of assistive ­technology I am very happy that school is behind What age did you start with it? We didn‘t really have any help until or equipment do you use to be inde­ me, that was very good, and also since Did you need any help (assistance) my mother wrote a letter to a minister pendent (for example an id cane,­ I have a job. in getting work experience or being who at the time also happened to be mobile phone, seeing eye dog, com- What are your dreams for the future? in the workplace? a teacher at my school. I wasn’t in her munication device, etc)? I want everything to stay as it is right Internships were part of school, once class, but I knew of her. What other things do you wan to now. at a DIY store. My mother wrote down everything ­learn to help you be ­independent

16 17 No, I received no qualification. I went Living shopping, travelling on public trans- 31 YEARS to school for 16 years. Where do you live now? port, medical appointments, house- Anna In a residential group of a sociotherapy hold tasks, and how did you learn to GERMANY Before you finished school, what facility. do these things? GERMANY was your future plan for work and a place to live? If you live away from home what are My parents are my legal guardians; Work in a workshop for disabled peop- your home arrangements; e.g. your they help me with the above-menti- le and live with my parents. own house or apartment, shared oned things. I can help in the house- ­accommodation, supported living? hold. I have always practiced different I live in a residential group. household activities with my mum. Job Did you do any work experience, vo- Did you or your family receive What types of assistive ­technology lunteering or job training at school ­assistance to find a place to live? or equipment do you use to be inde­ or when you left school? What sort No. pendent (for example an id cane, of work did you do? mobile phone, seeing eye dog, What age did you start with it? Where would you like to live in the communication device, etc.)? What Did you need any help (assistance) future? other things do you want to learn in getting work experience or being I´m not able to answer that. I think at to help you be independent (e.g. in the workplace? home is still the best. It‘s the place learning money skills, budgeting, Work experience in the context of where people understand me best. cooking etc.)? vocational school in Heiligenbronn. But I also like to be in the residential I like cooking with assistance. With my group when the right staff members pocket money I shop with assistance. Since leaving school, what are some are there. I talk to my family via video chat. If School of the things you have been doing, the staff in my residential group were What type of school did you go to – such as further training, paid or vo- more familiar with the tablet, that special or mainstream school? What lunteer work, social and recreational would be great. supports did you receive at school? activities etc.? What was challenging for you at Vocational training after school in Hei­­­­ school? ligenbronn for 2 years. Other questions 12 years special needs education and How do you stay in contact with advisory centre with a focus on cogni- Do you have a job, if so what do you ­friends and how do you access your tive development (SBBZ CSG Föhren- do, if not what sort of work would community? For example, catching bühl) and 4 years in a deafblind school you like to do? up with friends or going to see a (Heiligenbronn). Yes, I work in a workshop for disabled ­movie together, or going to the people. gymnasium or swimming pool for Did you finish your education (up ­exercise? to Year 12 for example) and did you Did you or your family receive assis­ Independence I have only few friends, but that receive a qualification? And for how tance to find a job? What skills have you learned to doesn‘t bother me. I like the young many years did you go to school? No, we managed that all by ourselves. ­become independent, for example staff at the residential home and at

18 19 work (I also like older staff, if they treat What are your dreams for the future? “Lebenshilfe”= German non-profit organizati- me with appreciation). I like my family My wish is to have an understanding on that offerswork opportunities in sheltered 33 YEARS best, my sisters. I have 3 sisters, that is and orderly living environment, a job workshops and support to disabled persons. Bianca GERMANY great! I like to look at my photo books that satisfies me and people in my GERMANY alone, but also with other people. environment who appreciate me and support me accordingly, if necessary. Tell us about a typical week for you This environment should give me so School and what you like most. much security and „at home feelings“ What type of school did you go to – Monday to Friday I go to work from that I will get along without my parents­ special or mainstream school? 8:30 a.m. - 12:00 p.m., then there is once that becomes necessary. What supports did you receive at lunch in the residential group. In the school? What was challenging for afternoon I often go for a walk with a you at school? guide, and then I go to work again for Bianca attended a special school, a about an hour. On weekends I help in so-called G-school (a school for intel- the kitchen, we take trips to different lectually disabled children). On avera- places. And every 4th weekend I can ge, there were seven students in the go home and see my family. class, one class teacher and one tea- ching assistant for caregiving tasks. What have been the rewards since leaving school and what have been Bianca did not receive any additional the challenges? support in her everyday school life, as School was great, but now I‘m grown there was no need for it. up and I want to be treated like a grown up. I always enjoy being with Actually, Bianca did not experience people who communicate with me, any major challenges in her everyday understand me and have fun with me. school life. After it, was a school for I like going on holidays, especially to children with intellectual and multiple Did you finish your education(up ­ the sea. I like to visit my sisters and I physical disabilities. to Year 12 for example) and did you am happy when someone in the family receive a qualification? has a birthday. They paid attention to Bianca‘s indivi- Bianca went to school for 13 years - dual needs and impairments. including one extra year. She didn‘t It is difficult when I am not under- ­graduate. stood. I am quite smart, and often The CHARGE syndrome diagnosis was people probably think „she is disabled not yet known at that time. Before you finished school, what anyway“. My family takes great care was your future plan for work and a that I can live autonomously as far as They thought Bianca was ­suffering from place to live? possible and that I am treated with re- autism and infantile brain ­damage. This is a decision Bianca was not able spect. to make.

20 21 Job over to the day activity group at the ­communication device, etc.)? What Tell us about a typical week for you Did you do any work experien- “Lebenshilfe” workshop for disabled other things do you want to learn and what you like most. ce, volunteering­ or job training people. to help you be independent (e.g. GERMANY at school or when you left school? learning money skills, budgeting, Monday to Friday GERMANY What sort of work did you do? ­cooking etc.)? 7:00 a.m. Get up What age did you start with it? Living Even with the aids listed here, an in- Toilet/personal hygiene/get Did you need any help (assistance) Where do you live now? dependent life would not be feasible. dressed/breakfast together in getting work experience or being Bianca lives with her parents. at home. in the workplace? 8:00 a.m. Pick-up by transport provi-­ No, Bianca wasn’t able to do some­­­ ­ If you live away from home what are Other questions der, trip to Radeberg deaf- thing like that. The only thing they your home arrangements; e.g. your How do you stay in contact with fri­­ blind services for day activi- tried at school were handicrafts, such own house or apartment, shared ac- ends and how do you access your ties (travel time approx. 10 as sandpapering a piece of wood. commodation, supported living? community? For example, catching minutes). These questions do not apply to us. up with friends or going to see a mo- Upon arrival: Feel box, with different Since leaving school, what are some vie together, or going to the gymnasi- materials. Every day a diffe- of the things you have been doing, Where would you like to live in the um or swimming pool for exercise? rent material, peas, lentils. such as further training, paid or vol­ future? Bianca has no friendships. Get-to- Depending on how she feels, unteer work, social and recreational We as her parents would like Bianca to gethers with former acquaintances little tasks such as: activities etc.? live in a place with residential groups from the workshop happen at the in- • Weaving, stamping, tea- Bianca hasn’t done any of the things in the future. Living on her own is itiative of us parents. Outings such as ring paper, papermaking listed here. not something we would consider for visits to the Open House or Christmas • Taking a walk in the ­­­­­ ­Bianca. market events at the workshop are botanical garden of the ­­ Do you have a job, if so what do you handled by the parents without any facility ­­­­­­and/or do, if not what sort of work would assistance. The parents also book trips • Riding the exercise bike in you like to do? Independence with the Lebenshilfe travel office. Ho- the gym After school Bianca moved on to the What skills have you learned to be- wever, these trips have not resulted in • Perception exercises day activity center of a workshop for become independent, for example any friendships or contacts. • Singing bowls, weighted disabled people (WfbM). shopping, travelling on public trans- blanket etc. port, medical appointments, house- Before lunch, depending on Did you or your family receive hold tasks, and how did you learn to how she feels – midday nap ­assistance to find a job? do these things? in the music room Basically, all of that happened auto- Bianca is not independent in any matically and without any problems. of the above-mentioned areas. She 12:00-12:30 p.m. Lunch On the basis of expert medical opi- needs constant support. nions, the employment office along 12:30-1:30 p.m. Various activities, go with the school and the parents con- What types of assistive ­technology for a walk cluded that Bianca would never be or equipment do you use to be in- able to find employment in the labor dependent (for example an id cane, Employees record the events of the market. This was why she switched mobile phone, seeing eye dog, day on Bianca’s talker.

22 23 1:45 p.m Pick-up by transport ­­­provider. At the weekend to the day activity center of the deaf- Regular family life with different activi- blind facility. There, they very much 2:00 p.m Arrival at home ties, shopping, household, trips to the strive to respond to her needs, and GERMANY Break and cappuccino. swimming pool, hiking, visits to the she has one-to-one support provided GERMANY fairground with a Ferris wheel ride. by students and gap-year volunteers. Go for a walk/rest, ever- The residents at the facility are all ol- yday family life, including Sleep in and watch TV for some time, der people (50+) and neither Bianca shopping, gardening etc. e.g. music shows. nor they can initiate social interaction. We make a point of invol- ving Bianca -> she is always What are your dreams for the with us. ­future? What have been the rewards since Bianca cannot share her dreams. Depending on the season, leaving school and what have been Things she wishes for: anything that is swimming in our own pool, the challenges? fun, Ferris wheels, merry-go-rounds, swings, trampoline. Win- Positive – Bianca was diagnosed with cotton candy, fireworks, ice-cream tertime is more passive, as CHARGE syndrome when she was 23 etc. These types of wishes she does Bianca does not initiate ac- years old. Ever since we have had ac- communicate. tivities on her own. cess to information through the self- help group. And we have made so 7:00 p.m. Dinner many new friends. Meeting friends from the CHARGE group has now be- 8:00 p.m. Bianca asks to go to bed. come an important part of Bianca’s She listens to a CD or the leisure time. radio before she falls asleep. After she left school, Bianca spent se- veral years going to the day acitivity center of a “Lebenshilfe” workshop for disabled people. However, there she received only little support and encouragement there. They were not able to sufficiently respond to her needs as CHARGE was still unknown at the time, and even once she was diagnosed, they didn’t have any staff with the relevant training.

Bianca often showed behavioural ­problems. For two years now she has been going

24 25 time at school - I often felt alone and I flat - as a first step away from home. Sometimes I still visit Rosi and I like to 30 YEARS had few friends. This was something I was familiar with think back to that time. Florian as my brother and sister also lived in a GERMANY What was challenging for you at shared flat and I knew (in theory) how Since leaving school, what are some GERMANY school? it worked. of the things you have been doing, I just don‘t like to remember and think such as further training, paid or about it. I think I felt alone, it was a lo- ­volunteer work, social and recreati- nely time. Job onal activities etc.? Did you do any work experience,­ I then went to the vocational training Did you finish your education (up to ­volunteering or job training at school center in Mettmann for almost two Year 12 for example) and did you or when you left school? What sort of ­years and that’s when I did two interns- receive a qualification? work did you do? hips in a retirement home’s kitchen. I could have - if I had made a great What age did you start with it? Did With the second one I got hired by a effort – completed 9 years at a main- you need any help (assistance) in canteen kitchen in Ratingen. ­There stream school. Together, we thought getting work experience or being in I had a wonderful boss with whom I about it and decided that a certificate the workplace? got along so well – unfortunately, he from a special school might be better I twice did an internship in a toy store. has retired in the meantime. That was so I would have more support options Once at a bank. And once in a small a big change for me. We understood after school. kitchen, as kitchen help. Then I did an each other „without any words“ and internship at REWE (a supermarket my concern was - how will I get along Before you finished school, what was chain) - but unfortunately there was with the new boss and hopefully he your future plan for work and a place no possibility there either. will understand my way of communi- School to live? The last one I did was an internship in cating. What type of school did you go to – My dream was to become a „film pro- a canteen kitchen. special or mainstream school? jectionist“. I was really, really into the Phew - this change really cost me a lot I attended a special school for the deaf cinema and movies. My class teacher This was arranged and supervised in of nerves. At first there were several and hearing impaired from 1996-2008. took me to a big cinema in Düssel- cooperation with the IFD (the labor misunderstandings and there were From 2008-2010 I went to a vocational dorf and we asked for an internship. agency’s service for occupational inte- times when I no longer enjoyed my training center in Mettmann. Unfortunately, that was not possible gration) and the social worker at the work. - because this profession will soon no Mettmann school. What supports did you receive at longer exist – everything is digital no- We then again involved the IFD - I had school? wadays. The toy shop was great. It was fun. I come to know the woman quite well In primary school I had a super nice stocked shelves, handled price tags and since she herself is someone with teacher - she did a lot of things with us Unfortunately, the career of my dreams and prepared order lists in the com- hearing loss, she could completely un- and she knew sign language. Plus, she was not a success. puter. Rosi was amazed how well I was derstand me and my worries. worked very closely with the parents able to do that. Unfortunately, I find and organized many meetings – even Then I had to think again and did some arithmetic very difficult – so I couldn‘t Then I had an idea - I wrote an e-mail outside of work. internships. work the cash register – which is why to my boss - because I can write ­quite I do not really like to think about my At that time, I wanted to live in a shared they could not hire me, unfortunately. well - and explained my concerns to

26 27 him in this way - the next day we ­talked but then we all didn‘t get along so well Did you or your family receive assis­ port, medical appointments, house- about it again and so we both got to anymore. There were conflicts becau- tance to find a place to live? hold tasks, and how did you learn to know and understand each other bet- se of the common tasks everyone had We always did everything together. do these things? GERMANY ter. Meanwhile we are getting along to do and for me it was really hard to I can do almost all these things thanks GERMANY very well with each other - and if we communicate. My parents both work in the social sec- to my caregivers and my mother. ever get stuck - Marius (the other boss) tor and could fall back on a good net- helps. He always understands me and When the only person with whom I re- work. And this came in ­­really ­han­dy. I can go shopping on my own. At the resolves some types of things for me. ally got along ended up moving out, I With my current apartment it was beginning of the week I write a shop- also didn‘t want to live there ­anymore. Abdullah (the best caregiver I’ve had) ping list of all the things I need. I think Do you have a job, if so what do you I wanted to get out of there as soon who knew the landlord. about what I want to cook during the do, if not what sort of work would as possible. Together with my caregi- week and then I go get it. Sometimes you like to do? ver we thought about what we should My brother has built me a great kit- I go and stock up with the help of my Yes, I do. I´m a kitchen helper in the do. My wish was to live alone and we chen. He has hung the cupboards so- caregiver - the rest I´m able to do alo- canteen kitchens at the Ratingen reti- thought about how that could and mewhat lower so I´m able to reach ne in my neighbourhood. I cook for 2 rement home. should work. everything. He bought a washing ma- days - so I don‘t have to think of so­­m­e­ chine that I’m able to operate - a stove thing new every day. Did you or your family receive I was very lucky - Abdullah happened where you can push in the knobs - so ­assistance to find a job? to know about a project in the same I can see directly whether the stove is Meanwhile I have learnt to do my Yes, we did. We worked very closely part of town. A place where people on or off. laundry all on my own. If I am unsure, I with the IFD in Düsseldorf and the with disabilities live, who also have ask my caregiver or parents or siblings. Mettmann school social worker. And children and they have five apart- We bought and assembled my furni- And if something ever breaks, it is that helped a lot. With the help of ments for individuals. He called the ture together and everyone helped. I very convenient to write to my bro- funding, it finally became possible to landlord right away - and one apart- remember how proud and happy I was ther and ask him what I should do. set up a workstation for me – which is ment was still available. We looked at once everything was set up. It has beco- He is great at explaining how I can go where I still work today. it and had to decide within two days if me so cosy. And now I have a wonderful Sometimes I get annoyed about having we wanted to take the flat. „nest“ to come home to from work. to get up so early - I start work at 6:00 a.m. - but I have a very nice team - so- That means you have to decide: Can I Sometimes I do feel alone - but it‘s all metimes we do silly things together manage on my own? How? What sup- better than in the shared flat. and that‘s what matters. port will I need? Can I afford this? A mega-exciting time! Where would you like to live in the future? Living We decided to be brave and everybo- With a girlfriend. ; ) Where do you live now? dy believed in me! Assisted living apartment of my own. If you live away from home what are Independence As a first step away from home, I lived your home arrangements; e.g. your What skills have you learned to in a WG (assisted living group home). own house or apartment, shared ­be­­­­­come independent, for example At first, everything went quite well - ­accommodation, supported living? shopping, travelling on public trans-

28 29 about doing something. Whenever he to help you be independent (e.g. I also meet with my friends. Unfor- What have been the rewards since is in Düsseldorf­ for a visit and there ­learning money skills, budgeting, tunately, my best friend (he also has leaving school and what have been is something that needs repairing, he cooking etc.)? CHARGE syndrome) does not live the challenges? GERMANY ­always has time for me. I am very gra- My mobile phone is my most import- ­nearby. But we see each other as often I was glad once I was away from school GERMANY teful to him for that. ant means of communication and it as possible. And I always meet him at – the wrong friends, the wrong love I also buy my clothes on my own. I go gives me a sense of security. the annual get-togethers. and bad experiences. to the city or order them on the Inter- It is great for directing questions at the I would like to have more friends close net. If I’m not sure, I’ll ask. My family people who are closest to me. They by - but unfortunately it is not all that and friends are good at giving advice know how I think and what I mean easy. What are your dreams for the future? for this. I’m allowed to do many things with my words and they answer in a My caretaker and I are on the lookout To travel and to discover new ­countries. on my own - I ask my mom if there is way that allows all of us to understand for opportunities so this can happen. New friends, including someone more still enough money in my account and each other. than a pal, would be more than just then I start a shopping tour. I would like to become even more nice to have, maybe a girlfriend and But I do not go to extremes and I know ­independent - as far as it is possible. Tell us about a typical week for you people that live close to me. which bills have to be paid from my But actually, at the moment I am quite and what you like most. Where I would like to live later on – account (rent - electricity - telephone - satisfied with everything that I have al- At 4:30 a.m. my alarm clock rings. well, I haven‘t thought about it that housekeeping money...) ready learned. I get ready and then I have a small cup much. I would prefer to stay in Düs- My parents and friends give me a lot of coffee. seldorf. But I would love to travel to I make doctor‘s appointments ­together of freedom to try things out and they other countries – just definitely not with my caregiver or my mother. take me very seriously as I am. At 5:30 a.m. my taxi takes me to work live there.­ However, appointments such as with a - I could also go on my own, however, I‘d rather stay in Germany. hairdresser I do book by myself via an there is no bus that could take me to internet calendar. Other questions work at this time of day. How do you stay in contact with I have learned most of what I need friends and how do you access your At 6:00 a.m. my work starts in the kit- from my mother and my caregiver. My community? chen of the retirement home. brother is also a great mentor. For example, catching up with friends or going to see a movie to- At about 2:30 p.m. I get off. Then I take After all, sometimes things need to be gether, or going to the gymnasium the bus home, on my own. Then it’s discussed that my mother or caregiver or swimming pool for exercise? time for a break. don’t need to know about. Yes, but only a few. Mostly I´m in contact with them via WhatsApp. So- Three days a week my caregiver from metimes I use a messenger. KoKoBe (advisory centre for people What types of assistive ­technology Unfortunately, since my CI surgery with intellectual and multiple disabili- or equipment do you use to be in- I can‘t talk on the phone anymore. I ties) stops by to see me and we take dependent (for example an id cane, think that‘s a great pity. care of things, go shopping or just mobile phone, seeing eye dog, But I can hear again and I‘m very happy chat. Sometimes we also do fun things ­communication device, etc.)? What about that. together! other things do you want to learn So, I use WhatsApp/Threema ­and email.

30 31 2010 - 2014 class was divided into groups of less le and that he should then switch to 28 YEARS “Paulinenpflege” Winnenden (residen- capable pupils, to which Niko belon- a place with a vocational school level. Niko tial school accommodation) ged, and more capable pupils. Bilin- Right from the beginning, there was a GERMANY Vocational school level for hearing im- gual lessons were no longer held and sense of belonging with the fellow pu- GERMANY paired people with additional intellec- over the years, the content of the les- pils with intellectual disabilities. Resi- tual disabilities. sons increasingly overwhelmed Niko. dential school was nice. The classes focused on practical life 2014 - 2016 Niko said: “9 years are finished. I don‘t skills and thus were easy to cope with, “Stiftung St. Franziskus” in Heiligen- want to stay any longer.” which also made the students feel bronn, department for the hearing proud of their success at school and and visually impaired with additional Problems in Neckargemünd self-confident. disabilities (residential school accom- There is no separate department for modation). intellectually disabled pupils at the Paulinenpflege Winnenden Hör-Sprach-Zentrum (Hearing-Spe- 2010 - 2014 1st year vocational school level ech-Center). The few pupils with ad- Paulinenpflege, based in Winnenden, 2nd year vocational training depart ditional disabilities were isolated and is a higher education facility offering ment of workshop for ­­peo- very marginalized. vocational training to hearing-impai- ple with disabilities There was teasing and quarrelling. red people with an intellectual disabi- They wrote tests and although Niko lity. had mastered the content in terms of The school lessons were great fun. The “Lebenshilfe”= German non-profit organizati- Support in school and biggest signing, he could not even read the teachers are competent in sign langu- on that offers work opportunities in sheltered challenges questions. He was frustrated that he age and they teach practical life skills. workshops and support to disabled persons. Hör-Sprach-Zentrum (Hearing-­ could not show what he knew, e.g. Accommodation in the residential Written by Niko and his mother Speech-Center) Neckargemünd by means of sign photos. They were school, however, was a big problem. 2000 - 2009 not willing to enter into a cooperation Niko lived in a house with very inde- School Enrolment in a bilingual project class with a school for intellectually disabled­ ­­ pendent flatmates who all communi- I went to following schools for hearing impaired children with ­pupils. cated by means of spoken language. additional disabilities, 5 pupils aged 8 There were no joint activities – the 2000 - 2009 years. The school project was funded Lindenparkschule Heilbronn idea was that boredom would result in „Hör-Sprach-Zentrum“ (Hearing-Spe- and supervised by the Stuttgart Minis- 2009 - 2010 motivation. This completely overwhel- ech-Center) in Neckargemünd. Bilin- try of Culture during the first 4 school After several internships Niko decided med Niko and he became sadder and gual project class for hearing impaired years. to switch to Lindenparkschule in Heil- sadder - almost depressive. children with additional disabilities A deaf teacher was hired, the lessons bronn. There, they have a department When we voiced our concerns during were bilingual, in sign language and spo- for hearing-impaired people with addi- conversations, they did not take us se- 2009 - 2010 ken language. Twice a year a conference tional intellectual disabilities, teachers riously. It was only when we wanted “Lindenparkschule” in Heilbronn, de- was held with the responsible represen- and educators have a basic knowledge to switch school after two years that partment for hearing impaired people tative of the ministry, school manage- of sign language. It was already clear they offered to move Niko to a less ca- with additional intellectual disability ment, the teachers and the parents. at the time of the transfer that only pable living group. In this new group, (residential school accommodation) At the end of this school project, the one more school year would be feasib- he ­immediately felt comfortable and

32 33 made two friends. The teachers orga- in Graben-Neudorf and to live at home Internship #6. and #7: Internship 2013 1 year vocational school at Stiftung nized and managed the students’ lei- with my family. at a farm for people with disabilities in St. Franziskus, Schramberg-Heiligen- sure time and activities. Winnenden. Organized by Paulinen- bronn. GERMANY When Niko’s friends left the school, pflege Winnenden. There are only a 1 year vocational training department GERMANY he too no longer wanted to stay in Vocational Experience few employees there who are compe- Stiftung St. Franziskus, Heiligenbronn. ­Winnenden. My Internships tent in signs. 15 months vocational training depart- Internship #1: during 8th grade (I Internship #8: 2013 internship in the ment at Lebenshilfe workshop for di- Stiftung St. Franziskus,­Schramberg- was 16 years old) at the Lebenshilfe vocational training department of sabled people in Bruchsal (a sheltered Heiligenbronn 2014 - 2016 Graben-Neudorf in the assembly Lebenshilfe, Bruchsal, during the ho- employment program). The German CHARGE group had put ­department. lidays on our own initiative, without us in touch with Stiftung St. Franzis- My Mum had found me the internship assistance. kus where Niko did an internship. He with the help of my class teacher, who Internship #9: 2015 individual days in Job was able to complete another year of also came to see me at work during the vocational training department of Since December 2017 I have been vocational school in Heiligenbronn. He my internship. The people working at Lebenshilfe in Bruchsal as well as at a working in a sheltered employment was very happy at school, he enjoyed Lebenshilfe are not competent in sign farm run by the Stiftung St. Franziskus program at Lebenshilfe Bruchsal-Bret- studying and he did, in fact, learn a lot. language. in Heiligenbronn, arranged and super- ten e.V. in Graben-Neudorf. The residential school group was very Internship #2: 2009 at Haslachmühle, vised by the class teacher of the voca- I work ½ day in the kitchen and ½ day good, all the teachers and educators Wilhelmsdorf (Haslachmühle is a faci- tional school level. While at the farm, in packaging. there are competent in signing. lity for hearing impaired, multidisabled there was no one who was sign compe- I love the work at Lebenshilfe, but I For Niko it was clear that after finishing children and young adults near Ravens- tent, some staff members of the work- would also like to work at Klabauter- school he wanted to go back to live at burg). Arranged by a former colleague shop program knew sign language. land (the indoor playground). home with his family and work for Le- of the class teacher in Neckargemünd. Internship #10: 2015 Internship at “Kla- I have made the decision to work at benshilfe in the neighbouring village. All employees at Haslachmühle are bauterland”, an indoor playground in Lebenshilfe on my own. The social competent in signing. They have put Philippsburg, during the Christmas holi- worker there said that they’ll have me Problems ­in together a set of signs of their own cal- days. Arranged by the parents on their and she sent all the applications to the Schramberg-Heiligenbronn led “Schau doch meine Hände” (mea- own initiative and with the agreement competent administrative office. Niko didn’t make any friends in Heili- ning = look at my hands). of the vocational school class teacher genbronn and due to the distance, he Internship #3: 2012 internship at the in Heiligenbronn. Without assistance. could only go home every two weeks. age of 20 at Lebenshilfe Graben-Neu- During my time in vocational training at Living dorf during the summer holidays on Lebenshilfe, I got to spend time in the I live with my parents. Did you finish your education (up to our own initiative, without assistance. following departments: My Mum is actively involved with an Year 12 for example) and did you Internship #4: Internship in vocational 1. sewing interest group called “Junges Wohnen” receive a qualification? training department of Paulinenpflege 2. assembly (Young Living). Its members, along with I didn´t graduate. in Winnenden at the age of 21. 3. packaging representatives from Lebenshilfe, ga- Internship #5: 2013 internship at work- 4. kitchen ther information about new types of I did 10 years of school and 5 years of shop for disabled people in Backnang. living arrangements for young people vocational school. Arranged by Paulinenpflege Winnen- This is what I did after school and also get in touch with investors. My wish was to work in a sheltered den. Some of the staff working there 4 years vocational school at Paulinen- In the spring I will be spending two employment program at Lebenshilfe are sign competent. pflege Winnendenn. weeks in an off-campus living group set

34 35 up by Lebenshilfe by way of a ­test run.­ with hearing people. App video calling and writing letters. 5:00 - 10:00 p.m. cinema get-together, What I would like best, is to continue I have My friends live far away. arranged by Lebenshilfe living with my parents. • a shopping book with I visited my friend Andreas (he also has Friday: GERMANY Once that´s no longer possible, I would symbols and Velcro cards CHARGE Syndrome) at his residential 6:00 - 9:30 p.m. disco at Lebenshilfe GERMANY like to live in a shared flat where disa- • a pharmacy book with sym- living. We get to see each other at the Saturday: bled and non-disabled people live to- bols and Velcro cards CHARGE meetings. My friend­Johannes 6:15 p.m. – midnight, a special get-to- gether. • a leisure book with symbols comes for a visit 2-3 times a year. We gether for friends at Lebenshilfe Maybe I will find a friend with whom I and Velcro cards play games, watch movies and go for Sunday: can share a place. • an iPad with communication walks. We laugh a lot together and just 3:00 - 6:00 p.m. weekly meeting for apps (GoTalkNow, MetaCom, clown around. people using the talker in Karlsruhe Compass DE, Sign Dictionary with Mum. Independence and many more) My typical week At home I enjoy watching DVDs, play- Shopping is okay but planning what I • an iPhone with WhatsApp so I Monday - Friday: ing games on my iPad or with my Mum need is hard. can make video calls 7:10 a.m. the bus picks me up at home and my big brother and his wife. Every I have a shopping book with symbols • (new) a Smartwatch, so that I 8:10 a.m. start of work in packaging or day we go for a walk with our dog and Velcro cards with pictures of food can feel when a call is coming­ in in the kitchen ­named Tabo. and other things. • an emergency board with me- 3:30 p.m. end of work At home I think about what to buy dical information and many 4:00 p.m. back home The rewards since leaving school with Mum and then I Velcro the pic- other aids Tuesday: I always liked the lessons in school. I ture cards into the book. I can also use Mum developed the shopping books 8:30 - 9:00 a.m. physical therapy at the enjoy learning to read, write and do the book to ask someone if there is so- with the help of experts from the AAC sheltered workshop arithmetic. mething I can’t find. service. Thursday: After school I didn´t have to live in the I cannot (yet) use public transport. 8:00 - 8:30 a.m. physical therapy at the residential school anymore – that was I can‘t hear or read when there is a sheltered workshop good. I was back at home with my pa- ­change in the timetable. 8:45 - 9:45 a.m. coaching lesson in rea- rents, which I like best. I cannot arrange and keep appoint- ding and writing ments with doctors, I’m not able to My dreams for the future provide information about my conditi- Leisure time I would like to continue working at Le- on. But I can show when I have pain, Monday: benshilfe and live with my parents. what the pain feels like and where the 3:30 - 6:00 p.m. bowling, arranged by I want my colleagues to learn some pain is. Lebenshilfe sign language. I can do a lot of household chores - I Tuesday: I would like to see my friends more of- learned this at residential school and 5:30 - 8:00 p.m. playing billiards with ten and I would like to go on holidays in the kitchen at Lebenshilfe. Noah (who is currently spending with my friend Johannes. I cannot manage my budget on my a gap year volunteering) Maybe one day I will be able to get a own. I can get money from the ATM Wednesday: job at the Klabauterland – the indoor and also pick up my bank statements. Other questions 4:00 - 5:00 p.m. health and fitness trai- playground. I use augmentative and alternative I have two friends. ning, arranged by Lebenshilfe communication (AAC) when dealing I stay in touch with them via Whats- Thursday:

36 37 Jobs ney management course at school. red and organised and not having all 24 YEARS I gained work experience at school in I also use ID cane, Smart watch and my time occupied so not being “full on Sarah Early Childhood centre in year 12. I phone. 18+ card for ID. And I want to busy” and also being involved with my was 16. I needed help as I went to a learn more cooking. friends. family friend’s kindy (she was head teacher). People asking me, where do you see NEW ZEALAND NEW ZEALAND I did volunteer work with Special Olym- Friends yourself in 10 years time? pics which is to do with public speaking I love to drink hot chocolate at cafes Do you want a boyfriend, why don’t and competition admin (recording or sit at local beach. I go to concerts or you get a job? times, handing out ribbons). Training shows and cinema. Trying to live my life with everyone gi- to be a Special Olympics Global Am- Access Community: I go shopping ving their opinion on what I should do. bassador and doing my Equestrian at the local supermarket, pharmacy, Live somewhere which has good training with Special Olympics. Box cafe, hairdressers etc. became a regu- access to “Uber” and “Uber eats” fit at the gym. Special Olympics com- lar customer. Gym with trainer. ­(application on the iPhone, iPad or petitions. I also do social things like computer), cafe, restaurants. social media, cafes, concerts, shows, I might retire from being a Speci- ­CHARGE Conferences, travel overseas Typical week al Olympics athlete. Go to the USA with family. In the future I would like Mornings: ­CHARGE Conferences, Europe CHARGE to be an Instagram influencer. Breakfast, clean teeth, inhalers (a de- Conferences. Keep going to the Aust- vice to deliver medicine to lungs), other ralia/NZ CHARGE conferences. Travel, medications, Fun Chi, Swallow Prompt take over my Great Aunt’s apartment Living (It is an App on my phone that helps place in Rose Bay Sydney. ­Maybe have I live at home with mum and dad. In me to manage my saliva. It provides a a little­­ job. School the future, I would like to live in a little reminder to consciously swallow. I do a I went to a mainstream school, most house, a flat or an apartment. 5-minute exercise, so every 30 seconds of my classes were in the learning it makes a beep noise that cues me to support unit. I had a teacher aide for swallow. It reduces dribbling and aspi- 15 hours a week. Reader/Writer for Independence ration of saliva.), ­Social­­­­ Media. exams and extra time. What was chal- I´m good at budgeting my finances. Lunch: lenging was studying, it was hard but Using “Uber App”. hospital appointments or horseriding I did it. Also fitting in, making friends Meals: baking cakes, making sandwi- training or Special Olympics, paper- and bullying was really challenging. ches, reheating meals and when dining work or gym. out, ordering food and drinks. Dinner: In New Zealand high school finishes Going to GP (General Practitioner) Watch one of my favourite TV show year 13, which I did and got the qualifi- appointments, getting prescriptions “Home and Away”, long bath and cation called NCEA level 3. from the pharmacy. more TV. Clean teeth, Medication and I live at home with my parents. I did I learnt from Blind Foundation NZ - inhalers, social media and listening to think of working in Early Childhood / in O&M (orientation & mobility service), music and bed. a Kindergarten or preschool. my parents and my brother and a mo- I love horse riding, being well prepa-

38 39 last year in school and then stayed on in to a supported living arrangement day per week and had responsibility 22 YEARS to do a college course. She is now in closer to her parents´ home in Berks- for assisting with loading/unloading Hannah the last year of a three-year course at hire (her college is 175 miles away in washing machines and tumble dryers; The Seashell Trust, a residential special Manchester). It currently looks unlikely cleaning tables; litter picking and was- college. that Hannah will be able to do much in hing and drying pots. Hannah also has the way of supported ­employment. experience of house duties in her resi- Hannah had a one-to-one support dential house which she shares with 3 UNITED KINGDOM UNITED KINGDOM keyworker in class (although not al- other students, including shopping for ways a trained MSI - Multi-Sensory Job both house and personal items; loa- Impaired intervenor) from Year 6 on- At her current college Hannah has had ding the dishwasher and changing and wards. She has also had access to a experience of recycling paper duties; making her bed. quiet space where she can withdraw restocking student’s bathroom cup- to when she is suffering from sensory boards; and collecting milk for college Hannah started working at the age of overload. from school each day. She has also 18 – she needs constant supervision undertaken paper shredding and la- and encouragement for her work ex- Almost everything was challenging minating duties. At Wythenshawe Life perience and volunteering activities. for Hannah at school. She has had to Centre (Jan-July 2018) attended one move school three times because the provision available was not sufficient Living to support her. The most obvious Hannah is at a residential special col- problems have been a lack of sen- lege (the Royal College Manchester, sory integration therapy at an early part of the Seashell Trust) in Cheshire. age, a lack of MSI expertise amongst She is resident at Seashell for 45 weeks School most teaching staff and being trea- in the year, returning home for 7 one Hannah started at a mainstream pri- ted as ‘PMLD’ (Profound and Multiple week breaks at home during the col- mary school for two years, then moved ­Learning Difficulties) when her primary lege holidays. to a local special school from Years 2 needs are related to MSI. to 5. In Year 6 her family moved house Hannah currently lives in a shared re- (from Oxford to Berkshire) to enable Hannah visited school up to age 19, sidential house at Seashell Trust with Hannah to move to a more appropri- then a 3-year college course to age 3 other students. Her family is hoping ate special school. She stayed at this 22. Hannah is working towards achie- that Hannah will move in to a shared special day school in Berkshire for six ving an accredited Edexcel Certifica- supported living house when she lea- years from Year 6 to Year 11. Hannah te in Personal Progress which covers ves college in July 2020. then moved to a residential special units such as ‘Developing independent For the future, Hannah would like to school in Kent for three years. When living skills (being healthy)’ and ‘Explo- live in a shared supported living house, this school closed down suddenly in ring Music’. closer to home. 2015 Hannah moved to her current residential special school/college in Hannah is in her last year of college. Manchester where she completed her The future plan is for Hannah to move

40 41 Independence in the community when she is staying Completed on William’s behalf by Hannah has been developing her in- at home. Frances Concannon (Mother) 21 YEARS dependent living skills on her college William course (e.g. shopping; household tasks), but still requires a lot of­support Typical week and what School/College & Job with most activities. ­Hannah like most William started at a mainstream Pri- In a typical week Hannah would enjoy mary School with a Hearing Impaired UNITED KINGDOM UNITED KINGDOM to go horse-riding and swimming, and unit and nursery. He attended the nur- also go on lots of trips out (e.g. in a mi- sery from the age of approx. 2 to 5. ni-bus). Hannah also enjoys access to He moved into the primary school and music / music therapy, and likes to visit remained there for 3 years. Despite (for a short time) a disco on a Wednes- staff in the unit’s best efforts his needs day evening. required more specialist provision. At Hannah enjoys food and would like to the age of 7 we moved William to a learn more about cooking. Special School.

Rewards and challenges William remained at the Special School Hannah doesn’t leave college until (Milestone Academy) from Year 3 July 2020, but the challenge for her to Year 14. He spent 3 years in the post-college will be to find enough ac- school’s Post-16 provision, the last tivities and interests to keep her inte- two of which were at a satellite site rested and happy. Her parents´dreams within the grounds of a mainstream for Hannah’s future are simply that she Secondary School (Wilmington Aca- is safe and happy. demy). William sat no exams and left of signing Communication Support with no formal qualifications. Workers. He attends College 4 days a week from 9am – 3pm. Assistive technology or We believed William was still capable equipment of developing his independence skills One day a week, at College, William In the last year Hannah has been intro- and continue to acquire knowledge. has the opportunity to do a session duced to a VOCA (Voice Output Com- We hoped to find an appropriate Col- of work experience. In his first year munication Aid) by a Speech and Lan- lege place for William to continue his he helped in the College library. This guage Therapist at the Seashell Trust, education. William seemed happy to year he has been offered the chance although with limited success so far. continue in a similar environment to to work in the College café. He has school. only attended one session to date but Friends staff report that he did well, clearing Hannah doesn’t really have any fri- William is currently in his second year tables, re-stocking supplies etc and he ends, but has developed close bonds at West Kent College in his home town. seemed happy to be doing it. We think with respite carers who she has known He belongs to the Foundation Studies this is a really positive opportunity for for years and who take her out on trips Dept and has 1:1 support from a team William within the safe environment of

42 43 College, supported by staff who know example, using money, self-care skills Independence that has placed priority on acquiring him and can help him communicate and mixing with others out and about William can use money for small cost “life skills”, over qualifications. with others and understand his role in the community. We hope gradually transactions and is beginning to under- and responsibilities. College staff hel- to support William develop these inde- stand what to do if he does not have ped him secure this experience. pendence skills further but understand the exact amount of money. He can that this will be a slow and gradual pro- dress himself and is largely indepen- One day a week when not attending cess. dent in his personal care, however he UNITED KINGDOM UNITED KINGDOM College, William spends time with his does need prompts to undertake some PA/carer. They regularly go swimming William does not currently have a tasks and a level of supervision to en- and eat at the café afterwards.­William job. When asked recently about a job sure he has carried things out – for enjoys the swimming and is also confi- ­William was unable to answer. He may example getting up at a certain time dent with the routine. It is a great op- not have considered it and is unlikely on College days, going to bed, taking a portunity for William to use some of to know what is possible. As his pa- bath or shower, washing his hair, clea- the skills he is learning at College, for rents, we recognise the high levels of ning his teeth. He can prepare simple support that would be needed to allow snacks and meals for himself but may William to access a job, however if that need prompts to do so. He can use the can be put in place we would like it if washing machine and dishwasher if as- William could do something that he ked to but again would probably need would take pleasure in and that would to be reminded that an overflowing help him contribute to a community, laundry basket and no clean clothes for example working in a café (like at means he needs to do some washing. College). He is happy to help on a shopping trip and seems to understand the process William is reliant on sign language. He of buying things. Once again we are therefore needs someone with him to Living uncertain if he could recognise when assist his communication and under- William lives at home with his family shopping (e.g. for food) is required and standing of the community around (Mother, Father and 17 yr old brother). then able to plan menus, a shopping him. This has restricted to a large ex- He is happy here and has probably not list and go shopping without signifi- tent the opportunities he has had to even considered any alternative living cant support. He does not currently act entirely independently – in reality arrangements. As his parents we hope, manage his own medical needs and he has never been truly unsupervised in time, to find a way to help William appointments. during his life. This is compounded by to live away from home – again with a his ASD diagnosis and the anxiety and high level of support – where he can William learns and responds well to occasionally challenging behaviour he experience an appropriate level of in- processes. He remembers the steps re- can present. This would pose a signifi- dependence. We are working with So- quired to do a number of tasks. He has cant risk in busy or unfamiliar environ- cial Services to understand his needs learnt these by watching us at home, ments. He can become distressed and and capacity with a view to finding by doing it himself and through the is not always able to cope with unex- such a place in the next few years. specialist education he has received pected events.

44 45 William has a mobile phone. He likes to and can load and watch films without day with PA – going swimming, lunch evening routine as weekday (esp. on a have it but sees it largely as a device to support. after, perhaps a walk in the local park. Sunday in readiness for week ahead). store games, photos or videos that he Living with his family William is invol- Home again with PA to wait for parents For quite a few years William has gone can access if he has leisure time. With ved in our activities - seeing extended to get home. Supper, time on PC, bed on holidays in the Summer organised assistance he can sent text messages family members and family friends etc. after 9pm. by Sense. He also went on a number but has never shown any strong desire He has a good relationship with his PA of school residential trips when he to do so without prompting. William and seems happy to spend time in his Tuesday – Friday was younger. He really enjoys these UNITED KINGDOM UNITED KINGDOM has a computer at home on which he company. He will come to the cinema, As above but after breakfast wait for trips and copes really well when away plays games (Minecraft, mainly), acces- loves to eat out at his favourite restau- PA to arrive and then wait to go to Col- from the family if his communication, ses the internet (to explore websites, rants and never says no to a trip to a lege. College until 3pm and then home. sensory and behaviour needs are un- look up things he like e.g. images of café for a snack and a drink. He enjoys Same evening routine as above. derstood and supported. He appears food or TV programmes). This is his going bowling and will go for walks. He willing to try new activities and partici- favourite activity. He has a DVD player likes to know what is happening from Saturday & Sunday pates well in everything that is offered. one day to the next, but rarely asks to Wakes independently, gets breakfast, Holiday volunteers and staff invariably do things himself, rather he waits for plays on PC, gets dressed – may ac- comment on his engaging personality others to suggest or offer an activity. company Mum or dad out for food and sense of fun. The only exception to this is when he shopping or walk and café. Relax at wants to know what food will be on home or go out with family if trip or offer. He loves a takeaway at the wee- activity is planned. Evening meal and kend and usually knows whether he wants Chinese, Indian or fish and chips.

It is hard to know if William knows what greater independence is and if he would want it. He seems largely content with the life that he has at the moment. We believe, any changes and expansion of his independence will need to be introduced gradually and with great care, but it is something we are keen to facilitate.

A typical week Monday Woken up by mum, get up and dressed and have breakfast with support/en- couragement from parents. Spend the

46 47 standing and using my arms to reach, the building so that I was more accep- ticipated in cub scouts through sixth 31 YEARS my job for a group project was to stand ted by teachers and students. It was grade with a group of wonderful boys Jacob and hold the group’s poster during the quite a fight for my parents, but af- who assisted me to complete all cri- classroom presentation. terward, other students followed suit, teria for achievements. In middle and and inclusion became more the norm high schools, students would often sit At Junior and Senior high school (age in my school district. I am a pioneer! with me at lunch or give me high fives 12 and up) I was in a special educa- Finding well-qualified and good and fist bumps in the hallway between tion classroom, but still participated one-to-one aids to work with me. Now classes. At my graduating class’ gradu- in some general education classes. in Michigan we have trained interven- ation commencement, at age 18 (I then My French teacher had me stamp and ers, and if I was in school now, I would went back to school for 8 years) when then cut out “Euro” rewards for stu- have had one with good training in de- I walked across the stage, (although I UNITED STATES OF AMERICA OF STATES UNITED dents who received extra credit, and afblindness and a credential showing really didn’t understand the purpose AMERICA OF STATES UNITED then pass them to students. This hel- three years of training. of what we were doing), I received the ped with my fine motor skills and social Having special education teachers loudest applause of any student gra- skills, as each student had to tell me who understood my needs. This was duating, out of over 400 students. I how many they had earned, and then I very difficult and didn’t really hap- continue to be greeted by community gave them to them. It also helped the pen until I was in high school (age 14), members warmly as an adult because students to get to know and appreciate when I had a teacher for 12 years who of my school inclusion. me as a member of the classroom. took intervener training and learned all about deafblindness and PECs, my https://www.youtube.com/watch?v=uZ- In Senior high school I worked a great main communication system. I was C0DAhIdCA School deal on vocational skills. My teacher extremely fortunate to have, for most I finished school with a certificate, but I went to Mainstream school. For the set up outside work experiences for of my school career, the same speech not a qualification. first seven years I was fully included me. By the time I left school at age teacher, who saw me for several hours My future plan for work and life was to in the general education classroom, 26, (an age limit unique to Michigan in per week and advocated strongly for live in my own home with full support even though I have severe disabili- the U.S.—most leave at age 21) I was my needs with the whole team. For and working in the community with ties/deafblindness. I had a one-on- spending most of my school day out in many years, she was my true main support doing work that was suited one support person throughout, and the community working. I came back ­teacher, in my eyes. A challenge for me for me or I enjoyed. a team of special educators (special for lunch and to ride the bus to and was the few years that they reassigned ed. Teacher, speech teacher, hearing from school. My transition after “gra- her and gave me someone new who and vision consultants, state deafblind duation” was easy because I kept doing really had no clue what to do with me. Job consultant, physical and occupational the same jobs. This happened three times, for a year I need one-on-one assistance in the therapists) who met regularly with each time, and she always came back. workplace but am also able to do much the general ed teacher to devise my But those years were wasted. of my work independently, with a few program so that I was working on my Challenges included Interestingly, because of the inclu- reminders to keep going. Beginning goals within the general education Convincing the primary school that sive schooling I received in our small at age 16, my school team helped me classroom while simultaneously parti- inclusion was a good idea. This took city in my early years, I had absolutely to find and connect with these local cipating in class activities. For example, several years and finally we had a new no trouble with friendships with the businesses. The vocational training if my goal was to increase stamina for administrator who changed the tone of general education population. I par- program at my school’s district was

48 49 pretty worthless, and put people on don’t really need the money (I receive brother. Community contacts have them” myself. However, my parents crews, to pick up trash and do other social security income provided for been huge in helping me achieve my prefer this to having more consistency such custodial­ work in groups. My own people with disabilities in the U.S.). current life. that would entail hiring people with school team put together individuali- I make and bag my own dog biscuits less education and enthusiasm, and zed options for me in my community, and sell them at local shops. more burnout and entrenchment in which helped me with my transition to Social/Recreational the system. work from school. In Michigan, we have a ten-cent return I have a bike, a trampoline, and a hot for all soda and beer cans, etc. People tub at home, which I use a lot. I love Did you or your family receive At school I explored many ­work­ options: accumulate these in great quantities to lie in the sun on my front lawn. I go ­assistance to find a place to live? because they are too valuable to throw swimming twice per week at the local No. We approached the family of the • Shredding documents at away, but also many people cannot be university, visit the apartments of elderly woman next door when she UNITED STATES OF AMERICA OF STATES UNITED school, at our city’s recycling bothered to return them. So, they pile ­friends, and homes of my college-aged was 95 and in a nursing home and as- AMERICA OF STATES UNITED center and at the psychology up. I provide a service to people like caregivers, take walks through the ked if they might consider selling her department of the local uni- this. I come to their homes/busines- park during spring, summer and fall house to us once she passed. versity ses and pick up their cans/bottles, and months, love the Halloween and fabric • Pulling empty hangers off take them to the local shop to recycle stores, looking at Christmas tree lights Also in the future, I would not like to racks at the local used clothing them through large machines that read in the store, and walking all through live somewhere else. I love my house! store the UPC codes and spit out a receipt the college campus and inside the buil- • Wiping down menus, filling for money earned on them. I take the dings. People greet me wherever I go salt and pepper shakers, receipt to the front, feed it into the because they know me. I give high fives Independence sweeping, watering plants, cash register machine, and receive the and fist bumps. My parents live next I can do some shopping with my in- and dusting at a local 1950’s money. The money I earn from this and door, and we visit one another often. tervener independently, if directed to themed restaurant from the dog biscuits is donated en- what to get off the shelf. I am pretty in- • Sweeping and doing laundry tirely to the CHARGE ­Syndrome Foun- dependent at my can return job, once at the local animal shelter dation in the U.S. to help families who Living at the store. I can dress and undress • Bagging dog biscuits at a cannot afford to make it to the con- I live in a supported living with 24/7 myself, eat by myself, and get around local pet food store ferences. In four years I have raised supervision/intervener care. I have 14 my house. I am able to make choices almost a thousand dollars. college students at any one time wor- within my house without much as- I work at The Pixie, the 50’s diner, king for me. There is a lot of turnover, sistance. For example, I will go into my washing down menus three times per Did you or your family receive as they graduate, and my parents put room and put on my swim trunks and week. It is volunteer work, but at the ­assistance to find a job? a lot of energy into hiring, but training head out to the hot tub. I only need end of each half-hour shift I go to the Jobs contacts were begun at school, happens quickly, and we learn to trust assistance taking the cover off and ba- counter and ask for a strawberry shake but dog biscuits and can return bu- one another. I am really adaptable and lancing to get in and out. I don’t need and I am given one as my “payment.” siness (Entitled “Jacob Can”) were don’t seem to have much problem with supervision in the hot tub or in my This means much more to me as a devised by my parents and caregi- people coming and going. I recognize parents’ pool. Most of this I learned reward than a paycheck, and works vers. Work at the Pixie began through them and like some more than others. ­through repetition and slow withdra- well because my guardian and the shop school, but because of a contact with It’s hard for me when a bunch of new wal of supports over the years. Many owner don’t have to deal with employ- the manager, whose son had played people are trained at once. I get frus- of these things I just spontaneously ment forms, payroll, and taxes, when I soccer and gone to school with my trated at the need to keep “training started doing on my own.

50 51 I use a cochlear implant (Kanso) and an Typical week and what I like spent for my care and all attorney and be consistent for several years so iPad for communication. My iPad has most fees. It was a huge precedent for the that my life was less dependent on the pictures on it I can use with a program I love my hot tub and lying on my blan- state, and many other people have different personalities and methods of called Proloquotogo. I use a picture ket outside. I love my baths in the eve- benefited from it. Other things like 14 people coming in and out all day. schedule for my activities each day so ning. I do like routine and am happy to that have happened in the last decade The college students could continue I know what’s going on, and I can make go and do my work most days (unless as well, as the financial crisis has to be here for all leisure times, wee- choices within that schedule for acti- I’m not feeling well.) But I really like re- trickled down to social services funds. kends, evenings, night-times, but I’d vities during my time off from work, laxing at home and in my room and on Working with multiple agencies is like have consistency in a daytime/workti- although often I don’t bother. I’m an my window seat more than anything. an extra part-time job for my mom. me intervener. adult and don’t need to make a choice Walking and balance take concentrati- The paperwork and requirements are using a picture anymore. I just inde- on and effort so any time I can lie down constantly changing, and it is difficult UNITED STATES OF AMERICA OF STATES UNITED pendently at home go and get what I I will. My weekly routine includes two to keep up with compliance. However, AMERICA OF STATES UNITED want to do and do it. sections of work most days, with lunch my parents have made sure that this and breaks in between them: Pixie/ hasn’t affected my care in any way, so I am always learning new things. It’s dog biscuits or Pixie/return cans, etc. I haven’t felt the stress of it. never too late to gain skills. I am lear- I have Thursdays off because I work at ning new signs all the time, with the the Pixie on Saturdays. assistance of my caregivers, who try My dreams for the future to provide consistent signing with me. I am living my future!!! It would be nice There are two things that my family Rewards and challenges after if I could find one person to be with would really like me to learn, which leaving school me throughout each day for the work- have been elusive so far: I have the life I want and the life that day portion, for consistency. Perhaps my parents envisioned for me on my a housewife or younger retired tea- • Use the toilet independently: behalf. I am happy with how it’s going. cher who is looking for something me- we believe there’s a neurolo- The challenges have been the burden aningful to do…six hours per day for gical problem that prevents for my parents and include all kinds five days per week, who could mana- me from being able to tell of agency and funding issues. For ge the household more for my parents My parents worry about what will when I need to urinate. I still example, the agency tried to take away happen when they’re gone, but guar- have accidents sometimes, my nighttime funding a few years ago, dianship and trust and will are all set. although this is getting better insisting that I was safe by myself with There is still worry in the backs of their each year. a monitor with which I could ask for minds that my home program will not • Be able to tell my team/pa- help by pushing a button and talking be tended to as it is now, but they have rents what is hurting when I to someone. I am deaf, I don’t talk. The a trusted party identified to keep it am in pain. Some of my idio- state was trying to make cuts and save going, and my four brothers will help syncratic behaviors often money. My parents sued the state and make sure things run well. One of my identify the existence of pain went all the way to federal court. The brothers is engaged to a former worker and what kind it is, but some- judge said the federal court was wrong of mine, who loves me and will make times I am in pain and can and reinstated the nighttime funding sure I am okay along with my brothers not tell them where. and refunded my parents for money and their partners.

52 53 Before you finished school, what was Did you or your family receive assi­s­ tation requests with both bus services 28 YEARS your future plan for work and a place tance to find a job? (Mom’s trying to help me learn this). I Kristin to live? We worked with the State Vocational can clean the house OK. Mom trans- My plan was to get a good job and Rehabilitation Services and we had se- ports me to all medical appointments. maybe live in an apartment with a veral Case Managers and Job Coaches. I´m still learning from Mom, and from roommate. But the last job coach found the BEST the workshop. I also have a good friend job! (she can sign!) that does activities with me once a month (shopping, games at Job her home, visit parks, etc.). Did you do any work experience, Living ­volunteering or job training at school Where do you live now? What types of assistive technology UNITED STATES OF AMERICA OF STATES UNITED or when you left school? I live with my mom and her boyfriend or equipment do you use to be inde- AMERICA OF STATES UNITED I did two school years and one Sum- in a house, though I wanted an apart- pendent? mer in a School to Work Program. I did ment and roommate. I have a cane (but don’t use it once I´m assembly jobs in a factory. I started at But mom thinks I need to learn more familiar with the area). I use an iPad/ age 16. I had to have a Job Coach that before that can happen...or get better tablet, smartphone, pen/paper. I need could use American Sign Language to supports (from people other than my to learn more money skills. Mom set explain the job/work. family). a spreadsheet in my phone and that helps me to keep track of money Since leaving school, what are some Right now Mom is working on get- better and not overspend. I need to of the things you have been doing, ting better supports from outside the ­learn more about paying bills. (They such as further training, paid or ­family so that I can inherit the house are paid by „Representative Payee“ – volunteer work, social and recreati- and still live there with supports. i.e., from Federal Benefits, not from School onal activities etc.? Mom’s work pay.) I really want to learn What type of school did you go to – I work in a Job Skills Training Workshop Where would you like to live in the to cook more. I use the microwave OK, special or mainstream school? What 1 ½ days a week. I started at 5 days a future? but need to learn how to cook using supports did you receive at school? week, then went to 3 days a week. Now I LOVE my town…it’s a close walk to the oven and the stovetop more … and I went to a Specialized School for the because I have a job, I only go to the everything! I want to stay in my house! safely! I also need to learn more about Deaf. Received all instruction in Ame- workshop 1 ½ days every week. Most how to schedule doctors and transpor- rican Sign Language (ASL). Large print of my recreation time I spent walking tation to appointments (and request (16-pt minimum) and non-cluttered in town, shopping, going to the library, Independence interpreters). pages for materials. chatting with friends on FaceTime or in What skills have you learned to be- Chat rooms. come independent and how did you Did you finish your education (up to learn to do these things? Other questions Year 12 for example) and did you Do you have a job? I´m good at shopping in town. I use a How do you stay in contact with receive a qualification? I work 3 days at Jack’s Donuts from dedicated public city bus (for people ­friends and how do you access your I did attend through 12th Grade and 8am-11am. There I clean the kitchen, with disabilities) and a county bus ser- community? received a Certificate of Completion/ the restrooms, the lobby and the vice (door to door pickup/drop offs for Mostly use social media for friends. I Attendance (not a diploma). ­tables. work only). I’m working on transpor- chat a lot! I don’t have many friends

54 55 available to go to movies or other town, go to the library, go shopping. School things, and there are no people in our Chill and chat at home. 34 YEARS small town in the same age group that I Love, love, LOVE the job at Jack’s! My Laura attended the public schools in Laura know ASL. I have some friends at the boss is the BEST: He can sign a little! San Francisco from preschool through library. We play games and do other Transition. She began school at age activities at the library. I walk all over What have been the rewards since 3 and graduated from transition at our town and everyone knows me and leaving school and what have been age 22. She was always in a special says ’Hello’. the challenges? day class in a regular or mainstream Having no friends that live close is school at San Francisco Unified School Tell us about a typical week for you hard. No one to hang out with...only ­District, which meant that she chan- and what you like most. one friend once a month. ged schools many times during her UNITED STATES OF AMERICA OF STATES UNITED Monday, Tuesday and Thursday: (Comment from her Mom: That is school career. Laura had a one on one AMERICA OF STATES UNITED I sleep late! Watch TV or chat on Face- the problem when attending a State aide for most of her school years. This book with friends. I go to the library or School...the students are from all was something that we had to work to shop and walk. over, and there may not be anyone convince the district she needed. Once the same age that lives close. Another the district realized her communicati- Wednesday: problem when no one local knows sign on and orientation and mobility needs I wake up at 6am; get ready for work; language.) the district became more supportive 7:30am the bus picks me up and I go of her need for a one on one aide. to the workshop by 8:30am. I work What are your dreams for the ­Laura also received Speech, Orientati- (assembly/stuff bags/etc.) until 3pm. I future? on and Mobility training, support from have 30 minutes lunch at noon. So- Keep working at Jack’s Donuts. Live in the California Deaf-Blind Services and metimes I go shopping or a group my small town where people know me. for a while Physical Therapy. activity for part of day. I ride the bus I want to have a boyfriend some time… home. Then I chill out! but maybe not yet. I want to find a A challenge during her school time was Laura’s team had a plan for her future, friend that will sign (and drive!) and go that the district never had a dedicated which we began creating when she Friday: places. Maybe get a roommate when teacher of the deaf or a classroom that was in grammar school. She had some I wake up at 6am; get ready for work; Mom is not here anymore, but I want was mainly using sign language. Fortu- jobs that she could do videoed and 7:30am the bus picks me up and takes to stay in the house here. nately her Orientation and Mobility her team came up with a Future Plan me to Jack’s Donuts. I work (cleaning) Teacher and her Vision Teacher used during a team meeting centred on until 11am, then the City bus picks me sign and helped train the rest of the planning for the future. The team dis- up and takes me to the workshop. I team. cussed what Laura’s future might look work until 3pm and ride the bus home. like if she could plan for and enjoy the Laura was in school until she was 22, things that were important in her life. Saturday and Sunday: so she actually went beyond her pre- We thought of activities she enjoys, I wake up at 6am; get ready for work. school through 12th grade time with what sort of community in which she Mom takes me to work at Jack’s Donuts the district. She received a certificate might live, what supports she would by 8am. Mom picks me up at 11am but was not able to earn a GED (Gene- need to enjoy her adult living and and I go home. Then I walk around ral Education Development Test). any needs or wants the team could

56 57 ­imagine for her. At the time Laura was Job Laura goes out with staff daily to acti- in transition from school, we started Laura has not done much ‘work’ since­ vities in her area. She loves to go to the working with the Arc San Francisco on her chores at school. She does help bay and the parks. She goes swimming a day program. Arc San Francisco is a with daily chores in her apartment with her family weekly. learning and achievement center for and goes out with groups that may be Laura seems very happy in her living adults with developmental disabilities. ­involved in volunteer activities, but situation and has more community The Arc was also aware that we wan- she does not ‘work’ per se. Laura has than she has ever had in her life. She ted supported living for her. Laura vision, cognitive, balance and physi- enjoys where she is! worked on moving to her day program cal challenges that make prolonged Our dream for the future is that Laura at the Arc with her school team and activity difficult for her and she has will enjoy good health and her com- two years after beginning her day pro- not shown interest in pursuing work munity of friends in a wonderful living UNITED STATES OF AMERICA OF STATES UNITED gram the Arc established a plan for her according to the definition the -wor situation. Her family feels fortunate AMERICA OF STATES UNITED supported living. ld may use. Because of her mobility, that Laura has been able to enjoy her ­balance and vision problems, she uses living situation for a long time. a wheelchair when she is out in the Arc San Francisco. Her family received community. assistance through the California Regi- She is able to get around her apart- onal Center and the Arc San Francisco ment and building quite well but the in finding a place for Laura. stress of a busy urban environment Laura has a wonderful place to live makes it difficult for her to get around where she is happy and hopefully she out in the community without a will reside there for many years to wheelchair. come. Laura always travels with staff. Laura has daily activities that she en- In her living situation she helps with joys with her staff and friends and tasks, which is part of her supported seems very happy in her present living plan. ­situation. She presently does not use assisti- ve technology and her only assistive ­device is a wheelchair for going out in Living the community. Laura helps her staff Laura lives and has lived near with cooking and household tasks. ‘Fisherman’s Wharf’ in San Fracisco sin- ce 2009. Laura lives in a three bedroom apartment in the Arc Apartments ope- Friends rated by the Arc San Francisco. Laura has a great community in her Laura has a bedroom in a very plesant apartment building and her friends three bedroom apartment that she come to visit her in her apartment. shares with a roommate companion She goes into the community daily and and another client of the Arc. participates in swimming, which is her Laura has supported living through the favorite exercise.

58 59 Malik now lives in his own home, an His blindness (functional vision in his would begin with a car ride in New 24 YEARS accomplishment I once thought was right eye and light perception only in England? Malik beyond both of us. How would he live the left), from colobomas, was disco- without my care? How could I let him vered at birth. He was diagnosed with Malik remained a student at Perkins go? Looking back at the journey we bilateral profound deafness at a year for six years. Later, he did become a have had, I am amazed at how beau- old. We did not have a definitive dia- border–not at Perkins, but at the Eas- tifully everything worked out. Is it per- gnosis of CHARGE Syndrome until he tern North Carolina School for the fect? No. But like most people, we stri- was three years old. This was when Deaf (ENCSD). We moved from Massa- ve for happiness and a meaningful life. he transitioned from early interventi- chusetts to North Carolina after Malik And Malik is happy living his best life! on at home to the Perkins School for experienced a serious illness and his the Blind deafblind preschool in Mas- doctors recommended we live some- UNITED STATES OF AMERICA OF STATES UNITED Malik-asante Lamar Morris came into sachusetts, where his services were where with less harsh weather condi- AMERICA OF STATES UNITED our lives 13 months after his older continued in an educational setting. tions to give his body a chance to get ­sister Imani and 5 years before his He was given a 1:1 paraprofessional healthier. Leaving Perkins was an ext- little sister, Zakiya. His name means in the classroom and we hired people remely difficult decision. The rapport “The King we are thankful for who is to assist him at home. Malik needed and trust built over the years with destined to do great things.” From the constant supervision by a medical pro- educators who had become like family day of his birth he had severe medical fessional. He could never be left unat- was deep. complications. By the time he was a tended for fear of a sudden medical year old, he’d had four major surge- crisis. It became evident very early on We enrolled Malik in ENCSD in 2015 His Best Life: A Young Man’s ries, including open heart, esophageal, that he would always need intensive as a residential student, when he was gastric, and testes surgeries, and over medical care and 1:1 assistance. 9 years old. I thought my heart would Transition to Adulthood 20 hospitalizations for respiratory, vi- stop the day we dropped him off. How Djenne-amal Morris - Malik's Mom ral, and gastric infections and ­failure We were fortunate to live near could anyone take care of him better to thrive. His daily routine seemed ­Perkins, so Malik was able to attend as than us? Eventually, he got used to Transition is often thought of as a pro- like a never-ending blur of g-tube fee- a day student. When he was five, my ­going to school Sunday through ­Friday cess in which young adults prepare for dings and visits from physical, occu- husband, Michael, had a conversation and spending the weekends with us. college or a career. For families of chil- pational, and other early intervention with his teacher, Maura. They discus- He enjoyed this independence and dren with disabilities, it is a lifelong en- therapists.­ sed the possibility of Malik being a looked forward to school. In fact, every deavor in which we support our child- border at Perkins someday. I was ap- Sunday when it was time to be driven ren as they progress at their own pace palled as I listened to them. How could back to school, he would get Dad’s key to meet milestones most parents take my fragile and medically dependent and sign “car” and “go” repeatedly un- for granted. It is a process that occurs son live anywhere but under our care? til they left. This was the beginning of in phases from the time a child is born. I held up Malik and said, “Does he look fourteen years of Malik learning to be- like a border to you?” This would be come an independent young man, ac- When raising a child with special and the beginning of his nickname, “The quiring skills to take him into the next complex needs, we are always prepa- Border.” A joke of a name that would phase of his life. At ENCSD he was pro- ring for the next skill to take them a plot the path of his future. Who would vided with two interveners. They were step closer to independence. My son have thought the journey to ­transition Deaf women–Krystal and Sheila–who­

60 61 were certified to work with the deaf- We began planning how to help him His best life. As I said earlier, HIS life, Using this information, I began resear- blind population. They were his bridge fulfill his dreams and desires for the not the life I had been planning for ching services that might be the best to the world academically and socially future. If it was work, so be it. If it was him for 18-plus years. Around that fit for Malik. I explored, interviewed, and were instrumental in his integrati- a circle of friends and new experien- time, our family participated in a per- and visited hospital type settings, al- on into the community. We were able ces, we were prepared to advocate for son-centered planning (PCP) session ternative family living homes, and to build the same rapport and trust them all. Malik taught us, as he cont- lead by a specialist from Eastern North group homes. We thought of building with his team at ENCSD as we had at inues to teach us, that it may not be Carolina University’s deafblind pro- our own group home but were ho- Perkins. I became very involved in the the future we had planned, but it is gram. This was an opportunity for Ma- nestly too exhausted and lacked the school PTO, Board of Advisors, and HIS future, the one that belongs only lik’s village to come together in a joint resources to take on that challenge. providing support to other families to him. He deserves the opportuni- effort to tease out his strengths, chal- over the years. ty to live a fulfilling, meaningful, and lenges, dreams, and hopes, and begin This was to be a very different expe- UNITED STATES OF AMERICA OF STATES UNITED happy life. Our role as his family at the to develop a course of action towards rience than sending him to college. AMERICA OF STATES UNITED time was to network and advocate for independence. Malik could not com- When I prepared to send Imani to col- those things within the adult services municate his future goals to us in a tra- lege, we packed her up, took her to world. A world that is based upon ditional manner, but the PCP provided school, and trusted she would contact ­eligibility and not entitlement. a clearer picture of how to incorporate us when necessary. Malik’s experien- his desires into a plan for his future in ce would be a different story. He was The next four years was spent gathe- his own words, so to speak. It enabled still vulnerable, medically and physi- ring information to help Malik prepa- us to develop opportunities at school cally. There was also the slight concern re for life after graduation. He stayed and home to enhance his skills related that he might not understand this new at ENCSD until he was 22. As with our to work he enjoyed and identified the transition and have adjustment chal- other children, we hoped he would community of support he would need lenges, and he did not have the capa- move out of the house after gradu- to achieve his goals. city to contact me if there was a need. ation and live his own life. But, how The year Malik turned 18 we celebra- would this be possible? Who would He deserved to have a place to live ted his life, but with some trepidation take care of him? where the staff was attentive 24 hours, in ways I had not felt with his older sis- My biggest fear was that the day af- where he could communicate in his ter Imani. At age 18, he was chronolo- ter his June 7th graduation he would language, learn independent living gically a man, but still had significant have to come home with some sort skills, make friends, work, be happy, needs that would require all of the of day habilitation plan, with an end- and be surrounded by people who be- services he had been receiving and re- less ­juggling of habilitation workers lieved in him and pushed him to be his sources to sustain them. We knew he coming and going and evenings of best. It wasn’t about just finding him a was eligible to stay in school until he chasing him around after a hard day’s placement; Malik needed a home. turned 21, but we grappled with how work. Knowing how much Malik loved we could collaborate with his educati- to return to school every Sunday, I In Spring 2017, we were presented onal team to make the next three ye- knew he somehow desired continued with an opportunity to have Malik be ars meaningful so he would be able to independence. How could I ­help or- part of a pioneer project. live and possibly work in an integrated chestrate conditions to allow him to ­Darrin McNeil,­ owner of Serenity The- community of his choice. live his best­­ l­ ife?­ rapeutic Services, Inc., opened a new

62 63 independent living home targeted to from doctors who had served Malik comes home to visit he makes sure his ­trepidations, and uncertainties about meet the needs of young men who are for the past 15 years to a cadre of new suitcase stays by the door as if to say, the future. But it has also been a wild, Deaf and have other disabilities. Malik ones. This was a crucial detail because “This visit is only temporary. I have a exciting roller coaster ride of laughter was to be its first resident. The staff I would longer be the primary person home.” He is the king of his castle and and love like none other, as well as was both Deaf and hearing. Serenity­ accompanying Malik to appointments. his roommates are his friends. He is a journey of growth in my personal also has a day program where he could He would now be going to doctor and learning skills and maturing. The peo- knowledge and maturity, professional go to advance his skills. This was the hospital visits with the Serenity staff, ple that work with Malik share how career, and capacity­ to support others. beginning of a dream come true. We not me. In addition, it was necessary much they have learned from him and His life story has touched lives and in- finally had post-graduation plans for to educate and train a whole new staff love him. The house manager told me, spired so many on a local, national, The Border! In fact, we decided to on his medical and behavioral needs “Working with Malik has been an in- and international level. Malik has gone have Malik move into the house be- and nuances. Determining a collabo- teresting experience. Despite having from the border to the student, to the UNITED STATES OF AMERICA OF STATES UNITED fore graduation. Now we needed a rative medical protocol was of the ut- disabilities, he is extremely intelligent young man living on his own, making a AMERICA OF STATES UNITED ­transition plan. most importance. I had to, once again, and highly capable of completing way in HIS world. put my trust and my son in the hands everyday tasks like cooking. Malik gets For a month, Malik visited the home on of others. what he wants and is very affectionate weekends to get to know the staff. He with staff and other clients. It’s truly a brought things from home and school joy working with him.” to help set up his room. In the meanti- me, we met with the staff to give them The entire staff has been very recepti- an overview of caring for a young adult ve to learning about Malik, improving with CHARGE syndrome and discussed their skills and accepting input from Malik’s plan and goals. On moving day, me as a parent and professional in the I felt a mix of emotions. I was excited field. It has become a true partnership and scared and had more questions in learning and building an environ- than answers. How would he adjust ment where Malik and others can thri- to his new home? How would we as ve. Darrin McNeil, the owner of Sereni- his parents adapt to the new world of ty recently told me that he is glad he adult services with a new set of pro- took that leap of faith to open one of fessionals who were responsible for his homes to this population of young making the types of decisions that we men, especially his buddy, ­Malik. had made for the past 22 years? Malik has been my greatest teacher. Transitioning to adult services was Malik has lived on his own for the past He has opened my eyes to a world of initially very challenging in several as- year and a half now. He has thrived possibilities rather than limitations. pects. I had to establish a new team and is happy, living the life he was me- He’s exceeded our expectations to The article was provided courtesy of the of medical professionals at UNC Hos- ant to live. A life so many of us didn’t live, thrive, and be independent. As ­National Center on Deaf-Blindness / NY / USA pital that served the adult population expect him to survive to see, yet alone I look back on Malik’s life and our and understood how to treat a person one similar to the type of life all pa- experiences with him, each transi- with complex medical needs. We went rents want for their children. When he tion has presented new challenges,

64 65 in my home school district with kids and live with my family and find part and at another religious organization 27 YEARS that had ADHD (although I did not) time employment and hoped to cont- where I help with mailings and put- Megan and mainstreamed for specialties like inue my education in a special college ting projects together for the religious homeroom, art, music and gym. I still program. school. I am recently employed part had my 1:1 aide. Things didn’t go very time ­through Supported Employment well for me that year. I left my home Job at our local ­Synagogue where I do Cle- district again and attended a variety of While I was at the Perkins School for rical jobs in the main office and get paid other special classes for children that Blind I was involved in their Work for my work. I belong to the JCC (Jewish needed behavioral supports over the ­Study Program starting at age 15 and Community Center) and work out and next 6 years. By the time I was ready ­worked at various jobs with the sup- swim laps. I take drum lessons every for high school, it was a challenge to port of a job coach. I volunteered in week at a music store and belong to 3 UNITED STATES OF AMERICA OF STATES UNITED find a placement for me. I then atten- the Braille and Talking Book Library as recreational programs. Through these AMERICA OF STATES UNITED ded the Perkins School for the Blind’s a Library Inspector and had numerous programs I attend weekly sessions of Deaf-Blind Program as a residential supported employment experiences. zumba, compete on a swim team and student till I turned 21 years old. I had I was a Weaver in the Perkins Caning participate in Special Olympics 2 times speech therapy, occupational therapy, Shop, a Greenhouse Laborer in the per year and do a music program. physical therapy, a Teacher of the Vi- Perkins Greenhouse, a Merchandise I attend monthly dances and play sually Impaired and a Teacher of the Associate at the Perkins Student Store, Challenger Basketball in the winter. I School Deaf/Hard of Hearing, an Orientation an Office Assistant for NAPVI (Natio- get together with friends when I am I attended a variety of schools. For and Mobility Instructor and School nal Association for Parents of Children not busy. I still have doctor appoint- Early Intervention and Pre-School I at- Psychologist while enrolled in all my with Visual Impairments), an Office ments and attend weekly speech the- tended an out of district school for the schools. It was often challenging for Assistant for Perkins International and rapy ­and behaviorist sessions. Blind. I had a Teacher of the Visually me when there were outside noises then held an off campus job as a Brand Impaired and received OT, PT, Speech, and distractions and when I couldn’t Attendant at Target. Orientation and Mobility, Art Therapy follow along in the classroom despite When I left school, I held a short- and Music Therapy. I then attended an being in the front and center of the term position as the Front Desk clerk out of district special communication room. Background noise was always at a Podiatrist’s office with the sup- program for 2 years within a regular an issue and so were group discussions port of the NY State Commission for public school. Once my language took when I couldn’t hear well. Sometimes the Blind. Once I had a state budget in off at age 6, I was brought back to my my OCD got in the way of learning and ­place and was able to hire a Communi- school district in our regular elemen- I would lose my patience. ty Habilitation Staff person, I was able tary school. I was 2nd grade age but I completed my education at age 21 to attend a Special College Program entered Kindergarten because I was years old. I was hoping to receive a for one year and currently continue in behind academically and stayed in a high school diploma but it didn’t work that program one day per week with a regular classroom with a 1:1 aide from out and I received an IEP (Individuali- College Mentor. I have 2 steady volun- Kindergarten through 2nd grade. I was zed Education Plan) diploma. teer jobs. I work at Afya – a non profit 2 years older than the kids in my class Before I finished school, I worked with organization that collects and ships I am happy to say that I currently but that was ok. In 3rd grade I was pla- a Transition team to do personal futu- medical supplies to places in need – 3 have a paid part time job at my local ced in a smaller self-contained class res planning. I planned to return home times per week for 2 hours each time Synagogue. I am familiar with the

66 67 ­surroundings and people and they also experience through the Helen Keller ­through Friday from 9am – 5pm. My ma on the phone 4 times a week. I try know me. I consider it my “dream job”. National Center‘s Community Sup- parents take me places in the ­evening. to practice my drums when the dogs I work with an Employment Specia- port Program. I don’t travel alone, but On Mondays I go to my paying job. I are not home – they don’t like the list through Supported Employment, I can shop and pay for my items and come home and have lunch, chill for noise. I like swimming and my college but she will eventually back away and I do have a very good sense of direc- a bit, take a walk and then go to my program the most. my Community Habilitation staff will tion. My parents still make my doctor volunteer job. After dinner I go to my Since leaving school I think my jobs ­continue to stay for support. I work ­appointments and take me, but I try to zumba class. have been very rewarding. It was very 2 days per week for 2 hours at a time answer the doctor’s questions at the On Tuesdays I either go to the gym to challenging for a couple of years after with the hopes of increasing my hours. visit. My parents order my medica- work out or I go to my volunteer job if high school graduation before I had I help with office work and uploading tions but I often go to the pharmacy to there is work for me. I come home, eat adult services in place and I was home music sheets to electronic files for the pick them up and pay for them. lunch and then meet with my college­ a lot without a schedule. Now that UNITED STATES OF AMERICA OF STATES UNITED ­Cantor. I use an id cane for walking out- mentor at the library for 4 hours. I I have adult services and I’m doing AMERICA OF STATES UNITED We worked with a Supported side so people know I have vision have an early dinner and then head to “self-direction”, I’m happy with all my ­Employment Agency and the Employ- loss. I have a hearing aid and a soft swim team. activities. ment Specialist worked with me on a band BAHA to help me hear. I use a On Wednesday I work, come home Dreams for the future – I would like weekly basis to discuss my interests, large iPhone and a large iPad to stay and eat lunch. I have some free time to live on my own someday and travel update my resume and make a cover connected to people through social so I might be able to go to the gym or more independently. I think I would be letter. Then we began the job search media sites. I would like to be able to do my volunteer job. I have my Behavi- very good at event planning and hope and found a job. travel using para ­transit. orist in the afternoon and then I head to have a job where I can use those to my drum lesson. I have my music skills. I would like to go out to my fa- Living Other Questions program in the evening. vorite restaurants with family and fri- I live at home with my parents. I talk to some of my friends on the On Thursday I have water aerobics in ends, attend services and events at my We have not yet looked into finding a phone, I use Facebook to keep up with the morning, head home for lunch and Synagogue, continue to go on ski trips place to live outside my family’s home. social media and sometimes I meet up then I have my volunteer job in the and travel to Disney World and the I would like to live in my own house/ with friends at my home or at an event afternoon. I have no evening activity beach. And of course, attend all the apartment, maybe with a roommate or at a restaurant. I prefer to text or in- and like to do scrapbooking or look at CHARGE conferences. and 24/7 support staff. I would like to stant message because I don’t always pictures. live near my family. hear too well by phone. And if there’s On Friday I have speech therapy, then a problem with Facebook, I could get my volunteer job, lunch and have a Independence upset, so I limit my posts. My mom free afternoon for visiting with friends, I’m independent at home but still usually makes the arrangements to exercise, shopping or playing games. need assistance with cutting and using meet with a friend after she asks me. Saturday, I spend with my mom and the stove and oven. I can make my I access my community with support we do water aerobics, go to a vegan bed, pick out my own clothes, do my from my parents and my Comm Hab restaurant (I have an egg allergy) and own ADLs, do laundry with minimal Staff worker and sometimes with help then pick up vegan bakery items at a assistance, help set the table, do dis- from my grandparents. coffee shop. hes and food prep. I learned a lot of My typical week is busy. Every day Sundays, my dad is home from work independence skills while away at Per- is a different routine. My Comm Hab and we try to do family stuff and see kins and also received some in home Staff person works with me Monday my grandparents. I talk to my Grand-

68 69 school district and the county. In addi- want their child’s compensation to with CHARGE should research employ- 28 YEARS tion to job placement and job­coaching be comparable to the compensation ment services within their community, Steven services, we also received transporta- of a non-disabled worker performing county, and state. tion ­assistance. the same tasks (including the same It’s never too early to start. Additio- ­benefits and opportunities for advan- nal information about NDEAM can be In 2015, I transferred to the Pentagon. cement). found at: If you have moved a child with disabili- www.whatcanyoudocampaign.org ties, you know the pressures of finding Nirvana, right? When nirvana isn’t­ new doctors and support services. ­quite possible, there are organizations As we no longer had the school district that provide non-competitive emplo- in our corner, we dealt directly with yment opportunities to individuals UNITED STATES OF AMERICA OF STATES UNITED the county for adult services. Job pla- with disabilities. Two organizations I AMERICA OF STATES UNITED cement? Nope. Job coaching? Nope. am familiar with, Production Services Transportation? Nope. There were Unlimited (Southwest Ohio) and Work lengthy waiting lists for all of the ser- Skills Corporation (Livingston Coun- vices we needed. ty Michigan) provide non-competiti- We eventually found my son a job ve employment opportunities within volunteering at a thrift store about their distinctive 501(c)3 non-profit- or 8 miles from our house and, with no ganizations. transportation assistance, we paid Both organizations offer training that out-of-pocket for a taxi. allows employees to develop job skills and soft skills. My son worked at Pro- Last year we moved to Michigan. duction Services Unlimited. We’ve worked with the county and It was a very positive experience, and Michigan Rehabilitative Services to he was eventually placed in an enclave My son Steven find my son meaningful employment. where he received minimum wage for by Valerie Muck Job placement? Yes! Job coaching? part-time employment. Yes! Transportation assistance? Yes! We recently contacted Work Skills Even though the services are available, Corporation as a potential option for My son Steven was diagnosed with it has still been a lengthy process and my son now that we are in Michigan. CHARGE syndrome at birth (it was we have faced set-backs matching my just an “Association” in 1992!) Steven son’s skills and talents to long-term, Some of our family’s toughest chal- “came of age” in Ohio. meaningful employment. And trans- lenges relate to employment oppor- He was involved in a vocational trai- portation options within a relatively tunities. Our situation is a bit unique, ning program (Project Search) and rural county are also challenging. as we’ve lived in three states since he had a comprehensive Individu- my son graduated from high school in al ­Transition Plan. Transition while Every parent hopes their child will find 2014. Three states and three vastly dif- in Ohio was ­relatively easy, as there competitive, integrated employment ferent experiences. was sufficient interface between the within their community. Parents also Parents, caregivers and individuals

70 71 IMPRESSUM For more information on CHARGE syndrome editor: these websites are full of helpful ­information.

AUSTRALIA CHARGE Syndrome Association of Australasia Ltd https://www.chargesyndrome.org.au/

BELGIUM CHARGE Syndrom e.V. Belgian CHARGE Syndrome Website Elternkreis betroffener Kinder http://www.chargesyndroom.be/index.php

Borbath 29 FRANCE 91448 Emskirchen Association CHARGE Germany http://www.associationcharge.fr/ email: [email protected] www.charge-syndrom.de GERMANY CHARGE Syndrome German http://www.charge-syndrom.de/

ITALY Mondo CHARGE https://mondocharge.it/

THE NETHERLANDS Dutch CHARGE Syndrome Network CHARGE Syndrome Association of Australasia Ltd https://www.chargesyndroom.nl/ PO Box 343 Seaford Vic 3198 SPAIN Australia Asociación Españoña Síndrome de CHARGE email: [email protected] https://sindromecharge.es/ www.chargesyndrome.org.au UNITED KINGDOM The CHARGE Family Support Group UK http://www.chargesyndrome.org.uk/

In the context of self-help support according to German § 20 h Social Code Book V USA the brochure „Hey, I reached adulthood, now what?“ is financed by BARMER health insurance. Warranty or benefit claims against the health insurance funds cannot CHARGE Syndrome Foundation arise from this. CHARGE Syndrom e.V. is responsible for the content and the design. https://www.chargesyndrome.org/

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