Jonx Autisme Preamble 1 What is autism? 2 Kasper is always stretched to the limit 2 What does Jonx Autisme do? 2 Autisme Team Noord-Nederland (ATN) 7 Assisted living for adolescents (Begeleid Wonen Jeugd, BWJ) 3 Residential and work sections for adults with autism spectrum disorder (WWA) 4 Mirjan on KAIRO: a place in class 4 Specialist offer and expert teams 5 Robert on BW Talma: nice to make a contribution 6 Together 6 Facts and figures 7 Future 7
Thank you for your interest in Jonx Autisme Autism is a serious developmental disorder that can express itself in many ways. For one person it is immediately clear that something is wrong, while the other seemingly goes through life without problems. In order to clarify the various manifestations, we speak of autism spectrum disorder (ASD). Living with ASD is often a lifelong quest. Jonx is specialised in ASD treatment and guidance of children, adolescents and adults. For people with ASD, each phase or life and development raises new questions that deserve an answer. For example, one person thrives best with outpatient treatment or home care, while others flourish in sheltered accommodation. With a residential and work community for adults with ASD, 2 assisted living sections for adolescents and the specialised ambulatory autism teams, we can offer a range of treatment and care options. We are proud that our Autisme Team Noord-Nederland Groningen (ATN) has held the TOPGGz certification (for specialised referrals and specialised clinical care) for years already. The assistance we offer is continually adjusted by listening to what clients and their family ask of us and what they think of our treatment. But scientific research and political choices influence our offer as well. Scientific research provides new insights. Political choices determine what society is prepared to invest in mental healthcare. Our involvement in children, adolescents and vulnerable adults in society remains the same. They deserve the best. We would like to know what you think of us and are happy to engage in dialog with you on that topic. Inge van Balkom, Director Jonx
What is autism? Autism is a serious developmental disorder which often already manifests itself in the first years of life. The child's development takes a different cours in many development areas. Autism takes a variety of forms and may therefore become apparent differently in each client. For one person it is immediately clear that something is wrong, while the other seemingly goes through life without problems. There are several forms of autism. The term autism is an umbrella term for all disorders within the Autism Spectrum. Autism spectrum disorder (ASD) is always a combination of the following characteristics: ›› the contact with people and things in the environment is insufficiently developed, is different or there is less need of contact; ›› the communication and language development are delayed or have developed differently, as have the gestures and facial expressions; ›› the interests and activities are limited and sometimes extremely one-sided.
Kasper is always stretched to the limit
‘I hear everything three times as loud’ Kasper is very sensitive to his environment. He says he is highly sensitive and has ASD. ‘I hear everything and this three times as loud as others.’ Kasper about his autism ‘You don't see it, some people don't notice it either’. His mother says ‘Kasper is actually always walking on egg shells… in order to be able to participate in society. That's why he is very tired during the holidays.’ Already before he was diagnosed, Kasper explored acting to learn showing emotions. ‘It is positive, I can adapt and I play the part well. On the other hand, to what extent do I deny myself then. To what degree do I need to adapt to society. Of course, society does not adapt itself to me so I have no choice. But if that means that I am ill all of the time…’ Kasper is afraid he may often be sitting at home as a result. Adapting is extremely tiring. ‘I can't take any extra stress which is of course not feasible. You cannot just go to school and do an internship.’ Kasper agrees that there are of course more people who play a role or do not want to show their emotions. ‘It is difficult because once in a while, you need not to put on an act, as otherwise assistance workers or counsellors don't see what is wrong.’ Together with his mother Kasper talks about his autism. He continuously tries to blend in with his environment. That is very tiresome for him. From: Verhalen van Lentis (Stories from Lentis). For reasons of privacy, we did not use Kasper's real name.
What does Jonx Autisme do? Jonx Autisme wants to provide optimum care to people with ASD, which may consist of guidance and treatment. Jonx Autisme is made up of: ›› three ATN-sections, divided over the 3 northern provinces. The sections collaborate closely. ›› Two sections of assisted living for juveniles and young adults in the city of Groningen, and ›› a residential and work section (WWA) for adults with ASD
Autism Team Northern Netherlands The Autism team Northern Netherlands (ATN) offers specialist ambulatory diagnostics and treatment to children and adults with ASD, their family members and other persons involved. In addition, the ATN carries out tasks in the field of information, consultation and improvement of expertise. The ATN focuses strongly on renewal of forms of treatment, collaboration with other institutions and scientific research. ATN Groningen holds the TOPGGz-certification (for specialised referrals and specialised clinical care). The first contact with ATN is a discussion with one or more practitioners. Where possible, an inventory is made together with all persons involved of the problems and the request for assistance. Sometimes, the problem may not become clear and questions remain that need answering before a form of treatment can start. In that case, we chose diagnostics.
TOPGGz, what is that? ATN holds the TOPGGz-certification. When do you get such a certification? This certification is awarded: • in case of highly specialised patient care, • if scientific research is carried out in addition, • innovative treatments are given • the specialist knowledge is shared If treatment is required, this can take place at one of the ATN-locations or at one of the locations with consultation hours. Treatments can be supported with the help of the Internet. The treatment takes as short as possible and for as long as necessary. There can be very many different issues someone with an ASD comes across. For these, Jonx Autisme has all types of specialist treatments. For more information, please enquire about the care paths in which we have elaborated this offer. The ATN also provides expert advice and shares its expertise with (mental) healthcare staff, those providing care for people with a physical or mental impairment and with the youth care sector. Consultation regards questions relating to diagnostics and the treatment policy. The questions are asked orally, in writing, by telephone or via email. The patient is not seen in person for this. Improvement of expertise In order to better guide children, juveniles and (young) adults, ATN offers trainings for improvement of expertise. The trainings focus on imaging, recognition and guidance and are customised depending on the request.
Assisted living for adolescents Assisted living for adolescents (Begeleid Wonen voor Jeugd, BWJ) offers guidance at two locations. There is one location in Beijum at de Munsterheerd for clients between 18 and 23 years old. In addition, there is a location at Merwedestraat in the Talmahuis, where clients aged 19 to 30 live. The BWJ-facility houses clients who, for whatever reason, can not (yet) live independently. It concerns mostly ASD The clients living at the BWJ-facility depend for a longer period of time on guidance. Working on a next step In this 24-hour housing facility, clients work on reaching goals aimed at the next step in life which may be living indepently, or continue growing toward independence. When leaving the BWJ-facility it is possible to move on to, for example, ›› an independent living facility, where clients can live for up to one year. There will still be guidance from BWJ. ›› the ‘housing vulnerable persons' option. For this option, the client rents a house of his/her own from Lentis where guidance from BWJ will be provided in the first year. The contract will be put in the name of Lentis for a year after which time, provided everything goes well, the contract is put in the client's name. ›› living independently. ›› a BWJ for adults There are of course other options we can think of. In the period at the BWJ-facility, the focus is on goals in all areas of life: ›› school, ›› activities during the day, ›› finances, ›› social contacts and ›› healthy nutrition. Clients of the BWJ-facility need to be motivated to follow a form of activity during the day, which can be school but also volunteer work. The BWJ-facility is not suitable for clients with addiction problems, clients with a mental impairment or serious agression management problems.
Living and Working for adults with ASD Living and Working for adults with ASD (WWA) is a specialist facility, housed in Zuidlaren, the Netherlands. The WWA offers specialised supervised housing, employment and a daytime activity to adults with a severe autism spectrum disorder who are unable to live independently and whose mental problems are not at the forefront. The WWA admits people from the three northern provinces. The section has room for 35 clients who all have a sitting-/bedroom with a kitchen, shower and toilet of their own. In addition, there are part-time day activities. At the WWA-facility, housing, treatment, work and day-time activities are fully aligned. Clients live and can work and relax within the same location. The orderly, predictable and structured environment at the WWA-facility causes the autistic impairment to disrupt the functioning as little as possible, and makes the most of the capabilities of clients. Within the WWA-facility, we develop knowledge and expertise that we offer nation-wide to adults with autism and to care professionals. The WWA-facility offers long-term to permanent accommodation. The client's individual request for assistance is the central issue. Our offer focuses on: ›› stabilising the autististic problems; ›› enhancing individual skills; ›› dealing with additional problems; ›› offering a safe living environment which gives the client the best possible quality of life The purpose is not a normal as possible existence, but the best possible one. Day-time activities Working provides structure and overview. Activities help maintain talents, skills and possibilities or develop them further. The WWA Sheltered Workshop offers work and day-time activities to adults with ASD. A varying and structured programme is agreed with the clients during which the client is given the guidance required. Attention is paid to developing a work routine, pace, concentration, stress management and social skills. The Sheltered Workshop has various sections that offer day-time activities. The sections consist of a woord workshop, a garden and greenhouse, a creative unit, a production unit and a textile work forms area.
Mirjan van Heese about KAIRO
‘It is important that ‘my’ students find their place in class.’ Among adolescents with an ASD who follow secondary vocational training, the percentage of school dropouts is very high. To help this group of adolescents complete a vocational training, the KAIRO-project was started a year ago. Ambulatory social worker Mirjan van Heese talks about her experiences during the first year of working with KAIRO.
Finding a place It is important that students find their place in class: ‘Whether that happens easily depends on the class dynamics. If a student with ASD shows very deviating behaviour, I let him/her give a presentation about him/herself. This helps cultivate understanding and the students are often very tolerant when they understand their fellow-student with ASD and where his/her behaviour comes from. Students with an ASD often take the things they hear quite litterally, for example. In class they said ‘just take what you want’ when students were sharing treats. A student I supervised then took six, leaving too few for the other students…’
Planning and organising Apart from the social and communication skills, also planning and organisation skills, come less naturally to students with an ASD; it is difficult for them to structure and get an overview of everything that comes their way at school. Mirjan therefore always urges her students to use an agenda. ‘Many of my students are not used to that yet. It is also very important to involve the system, the home situation of the juvenile in the learning process. At home, structure and overview need to be implemented as well, and this varies from the decoration of the room to helping with homework and ensuring the school papers are neatly arranged in binders.’
Using talent Mirjan says that, for participating in KAIRO, it is important that a student with ASD can look at him/herself: ‘He or she needs to be able to talk about his/her ASD and really needs to want to follow the training. What KAIRO is also about is deploying talents instead of the handicap. The choice of, for example, Game-Design or ICT is a popular one, as they often are talented in this field and with the proper guidance these juveniles may become motivated employees. However, motivation in itself is difficult for a juvenile with autism: if you lack overview and have trouble structuring things, motivation is also hard to muster up of course. In fact, they continue to be juveniles whom you need to take by the hand.'
Targets and learning points Mirjan carries out her activities as KAIRO-supervisor in collaboration with the student supervisor from Noorderpoort: ‘The student supervisor is responsible for the action plan, which states the targets and learning points of the student. These are very specific points, for example, for the student to ask a question if he does not understand something, or arriving on time every day. The division of tasks between the student supervisor and me varies per student. I think it particularly important that reporting lines are short; if there is a problem with a student, we go to the teacher together as soon as possible.’
The first steps towards work Eventually, it is the intention that KAIRO is a 3,5 year phased project for the student with ASD, in which the student is guided step-by-step, from initially becoming familiar with the education course to, finally, the last phase of obtaining the senior secondary vocational education diploma (MBO) and the first steps toward employment. This story is based on the corresponding story on the Jonx website.
KAIRO (the abbreviation stands for Kennisontwikkeling Autisme Integratie Regulier Onderwijs (knowledge development of autism and integration in formal education) and started in the schoolyear of 2013. The project is a collaboration between Noorderpoort eductional institution and Autisme Team Noord Nederland (ATN) of Jonx in Groningen. Ambulatory social worker Mirjan van Heese supervises six students with ASD at Noorderpoort.
Specialist offer and expert teams Autism manifests itself in many ways. In order to take account of the various questions, we have a specialist offer and work with expert teams. Our expert teams ›› Infant team ›› ASD + team ›› KAIRO ›› FACT-team.
Our specialist offer Infant The Infant- team offers diagnostics, treatment, consultation and information. It is also possible to consult the Infant-team and information is provided on ASD in children younger than four. A number of characteristics of young children with ASD are: ›› limitations in social contact, such as for example not or hardly making eye contact; ›› limitations in the field of communication, such as a delayed and/or disrupted language/speech development; ›› limitations in the field of play and interests such as one-sided play or not playing at all.
ASD + More than half of the people with ASD have a mental impairment. Apart from this limitation, there are other restrictions such as an auditive and/or visual impairment and/or a motor skill impairment and/or a neurological disorder. The ASD + team offers specific expertise in the diagnostics and treatment of these people. KAIRO KAIRO stands for knowledge development regarding autism and integration in formal education and is a collaboration between Noorderpoort and Autisme Team Noord-Nederland (ATN) in Groningen. ATN Groningen is part of Jonx|Lentis and collaborates with the dr. Leo Kannerhuis (centre for autism). KAIRO helps laying a solid foundation prior to and during a vocational training.
Compulsive disorder spectrum The outpatient clinic team for compulsive disorders is specialised in examining and treating compulsive disorders that may occur in children, adolescents and adults. FACT FACT (Flexible Assertive Community Treatment) is an effective and flexibele form of care. This form of assistance is appropriate for persisting or permanent problems. The assistance is provided at home, in school, at work or at the outpatient clinic. RelASD RelASD, Relationships and autism spectrum disorder. Outpatient treatment for couples and couple group programme. Relationships are always complicated. That certainly applies if one of both partners has an autism spectrum disorder. In the past years, the ATN has gained experience with treatment of couples. Through the collaboration between ATN and PsyQ Seksuologie, the expertise in the field of ASD, system- and relation therapy and intimicy and sexuality has been combined. Please visit our site www.jonx.nl for the total offer.
Robert Reigersberg about working at Begeleid Wonen Talma (BW, supervised living)
‘It is nice to be able to contribute to the successes of our residents.’ Robert is agogic supervisor at BW Talma, an accommodation for twenty adolescents and young adults with ASD.
Open and clear ‘I find it a very interesting target group. Openness and clarity are highly appreciated at BW Talma. Communication often has a very litteral meaning to our residents. When I just worked here, I said to a resident who did not look forward to something: ‘In time, you'll take it in your stride’. The resident looked at me in surprise and asked why he needed to walk’, Robert says laughing. ‘From the BW-facility there is a transition period to society. These adolescents and young adults live with us because they can not yet live fully independently. As supervisor, you play a key role to let the transition to society for the adolescents run as smoothly as possible.'
Transition to society ‘In this transition to society it is important to look for the little things, take small steps. For support, I look at their hobbies and interests. For example, one of our residents is interested in cooking. That's why we contacted a café-restaurant in Groningen that offers people with a request for assistance the opportunity to gain work experience. After a first meeting, the head chef was happy to work with our resident. I accompanied the boy to the café-restaurant. We cooked together, made a dressing, baked cookies and also learned how to make flowers from a carrot. The fourth time he went by himself.’
Support and motivate ’It is important for our clients to support and motivate them. It is nice to be able to contribute to their successes. That is the added value of the work. You need to go one step further and be creative. Of course they are small steps. You don't have any guarantees so you need to stay alert during the entire process. Always ask yourself how you could help someone even better, taking the possibilities into account.’ This story is based on the corresponding story on the Jonx website.
Together Apart from children, adolescents and adults with ASD, Jonx Autisme also supports the system; parents, partners, brothers and/or sisters and school. Jonx Autisme thinks it is important that patients become stronger through their own resourcesen and to strengthen the capacity of the support system. That's why we collaborate closely with clients, family and partners in the chain. Partners in the chain In order to maintain the care at a high quality level, we collaborate with partners in the chain in the three northern provinces and nation-wide.
Due to effective agreements and reliable collaboration, Jonx has a very good network that meets the need. A few examples of partners in the chain are: ›› Dr Leo Kannerhuis ›› Municipalities ›› IVH integrale Vroeghulp (integral early intervention) ›› GP's and medical specialists ›› NVA Nederlands Vereniging voor Autisme (Dutch autism association) ›› Elker ›› Youth care institutions ›› Noorderpoort ›› RUG University of Groningen ›› Accare ›› Autism Network Groningen-Friesland ›› CASD 18+
Facts and figures Jonx Autisme has several locations spread over Groningen, Friesland and Drenthe. The residential facilities WWA and BWJ offer 24 hour care for 7 days per week. The ATN-locations are open every working day from 8.30 am to 5 pm. Some locations are also open in the evening. In Friesland, we have various locations with consultation hours. You can find the address details of our locations at the back of this brochure. Key figures (reference date 1 February 2015) Number of clients in treatment • ambulatory 1,739 • clinical 95 Total number of clients 1,834 Number of employees • 186 persons • 134 fte. Client satisfaction 7.7 Average ambulatory treatment duration at Jonx Autisme 195 days Locations 6 locations divided over Groningen, Friesland and Drenthe.
Future Effective With scientific research and innovation Jonx Autisme works on the future. Jonx Autisme wants to be effective. Our teams and sections work autonomously and maintain the relationship with their environment. Therefore, our teams can quickly respond to changes in the environment and to questions of the clients. E-health E-health is and will certainly become increasingly important for adolescents. Consequently, Jonx Autisme collaborates inside and outside Lentis in e-health developments such as, for example, video calls, client participation and the Minddistrict-project. In the framework of the Leo Kannerhuis Nederland and the national network for integrated youth mental health care, Jonx Autisme collaborates in the field e-health developments and stimulates the exchange and expertise.
Permanently expert with Jonx Pro Early signalling and preventing of symptoms is just as important as handling them. That requires permanent increase of expertise. Jonx therefore has a knowledge centre of its own called JonxPro. The specialist knowledge present witin Jonx is shared by organising courses, trainings and information meetings. Scientific research ATN carries out scientific research independently and in collaboration with others. Research shows the effect of what we do. By linking results of the scientific research and the results from the real world, we can improve the quality of care. Through research, we increase our knowledge of psychiatric disorders. Currently, research is carried out on ›› Multiplex autism families (Academic Workplace Autism) ›› Cognition, self-harm and autism in Cornelia de Lange-syndrome ›› Quality of life of adults with ASD residing at the WWA-facility ›› Repetitive behaviour and sensory symptoms in ASD Interesting links www.leokannerhuis.nl /autism / vroegsignalering www.lentis.nl Jonx Autisme addresses ATN Groningen Laan Corpus den Hoorn 102-2 9728 JR Groningen Telephone 050 – 522 32 99 firstname.lastname@example.org ATN Friesland Zuiderdwarsvaart 72 9203 JB Drachten Telephone 0512 – 334 950 email@example.com ATN Drenthe Crerarstraat 6c 7901 AE Hoogeveen Telephone 0528 – 229 930 firstname.lastname@example.org Begeleid Wonen Munsterheerd Munsterheerd 30-45 9736 GG Groningen Telephone 050 – 520 17 90 email@example.com Begeleid Wonen Talma Merwedestraat 54, kamer 2.13 9725 KE Groningen Telephone 050 – 520 7080 firstname.lastname@example.org Wonen en Werken voor volwassenen met ASD Schipborgerweg 2 9471 PN Zuidlaren Telephone 050 – 409 78 20 email@example.com
Locations with consultation hours Jonx Autisme has locations with consultation hours in the following cities: ›› Leeuwarden ›› Damwoude ›› Oosterwolde ›› Sneek Visit www.jonx.nl for the current contact details or for more information on Jonx Autisme and Jonx Ambulant Colophon For more information, please contact the Lentis information service: telephone 050 – 522 31 50, firstname.lastname@example.org J 0021 | 10-2015