Services for children with autism in Switzerland
Health services in Switzerland are provided by public clinics and hospitals and by private doctors and hospitals. All 8 million inhabitants living in Switzerland are covered by a compulsory health insurance. Services for children with disabilities are organized within the public sector of the various cantons of the country. Screening for autism within routine paediatric check-ups in early childhood is not a standard procedure in Switzerland. Unfortunately, many paediatricians lack the expertise to detect the early signs of autism and often advise parents, who are concerned about the development of their child, to wait and see how the child develops. This can lead to a rather late diagnosis and intervention for children with autism. However, according to a recent parent survey [
20], this delay has decreased in the recent past. Whereas the mean age at diagnosis had been 11.5 years for children born in the 1980s and 9.9 years for those born in the 1990s, it has gone down to 5.4 years for those born after 2000. Unfortunately, there are no valid prevalence estimates of autism for Switzerland.
There are very few specialised interventions available in Switzerland for children with an early diagnosis. Service delivery for children with autism depends heavily on where the family lives. Treatment for a preschool aged child typically consists of one hour a week of early special education. In a few regions, up to three hours a week of early special education intervention is granted. Furthermore, one or two hours a week of speech therapy and sometimes an additional hour of occupational therapy is offered in addition to the hour of special education. Most of the professionals providing these interventions have little to no experience working with children on the autism spectrum. Those professionals that do have experience usually cannot take in new clients because they have long waiting lists. According to the recent parent – based report [
20] both preschool and school aged children with autism receive non- specific treatments like speech therapy and occupational therapy because these are treatments that are covered by the insurance companies.
In Switzerland, professionals providing EIBI are confronted with misconceptions and myths similar to those mentioned in recent reports describing the situation in other European countries [
19] and the US [
21]. ABA is not known as science, it is only known as a form of early intensive intervention for autistic children. ABA is still seen as equivalent to discrete trial teaching and not accepted by many professionals. Very few specialists working with young children with autism have training in ABA. Very little ABA is used in schools, most of the staff that are specialized in autism have training in TEACCH [
22] and the so-called Affolter-model ®. The latter was developed in Switzerland and is based on the idea that autism is the result of a neuropsychological problem of perception. It is almost exclusively implemented in Switzerland. There is only one specialized school for autistic children in the German speaking part of Switzerland. This school does not use ABA either and does not have a Board Certified Behavior Analyst (BCBA) or Board Certified assistant Behavior Analyst (BCaBA) staff member or supervisor.
However, the picture exchange communication system (PECS; [
23]), a behavioural intervention, is used by some special education teachers in classrooms and is sometimes used by early special educators and speech pathologists. There are only two certified PECS implementers in the country and both are not BCBAs nor are they non-certified behaviour analysts. The other professionals who have taken the basic PECS course do not have in depth knowledge of ABA either. Since many professionals using PECS in Switzerland have other theoretical backgrounds, they often do not use PECS the way a trained behaviour analyst would. PECS is often confused with TEACCH and is used to prompt the child’s receptive language skills or to talk about the child’s day. Systematic data collection is rarely carried out and the skills in systematic prompt fading are often insufficient so that many children are prompt dependent and are left without an effective form of communication.
As of February 2016, there are only eight BCBAs living in Switzerland and a small additional number living either in nearby Germany or France and working with families in Switzerland. Three of the Swiss BCBAs are working in the French and five in the German speaking part of Switzerland. Three of the BCBAs are working independently; two are working in a privately funded centre providing EIBI in the French speaking part of Switzerland and three are working in a government funded child and adolescent psychiatric service that is part of the University of Zurich. All of these experts are providing behavioural intervention for young children with autism.
In Switzerland, autism is declared a congenital defect and, therefore, medical treatments (psychotherapy, occupational therapy and physiotherapy) are not covered by the ordinary private health insurance but only by the public disability insurance. Since 2008, educational interventions (speech pathology, special education) are covered by the Swiss Conference of Cantonal Ministries of Education (EDK) and not by the ordinary health insurance or the invalidity insurance. Up until January 2014 the invalidity insurance did not accept EIBI as a scientific and appropriate medical method for the treatment of children diagnosed with autism. This was officially stated in two court decisions in 2004 and 2007 in which the request for financing EIBI was declined.
After ten years of pressuring the Federal Social Insurance Office, of which the invalidity insurance is part of, it was finally decided to at least partially contribute financially to EIBI for children with autism. The Office stated that EIBI is only partly a medical intervention and, thus, within the responsibility of the Office. The other part of the intervention is educational which lies in the responsibility of the ministries of education. The Federal Social Insurance Office now pays a flat rate for EIBI over two years. Children qualify for payment if they have a diagnosis of infantile autism, are under the age of 5, and receive at least 20 h of intervention a week run by one of six designated centres. The fee of 45’000 Swiss Francs (equivalent to 45 500 US$) set by the Federal Social Insurance Office is supposed to cover half of the intervention. Since early behavioural interventions are usually more intensive than 20 h a week this amount in fact only covers about a third of the costs of an intervention that lasts for two years with 35 h of intervention a week amounting to a total of 136 500 US$. The Federal Social Insurance Office sees the ministries of education being responsible for the other part of the costs.
The Federal Social Insurance Office selected six centres in Switzerland to provide early intensive intervention. Not all approaches are behavioural, two are non-behavioural. In two of the centres BCBAs are involved in the planning and implementation of the intensive intervention. In the other centres psychiatrists, clinical psychologists, special education teachers, language pathologists and occupational therapists are in charge of early intensive intervention.
In contrast to the Federal Social Insurance Office, which has the same guidelines for every canton, the ministries of education are working independently in the various cantons, deciding which kind of educational intervention and how many hours of treatment are paid for in each canton. Even though two cantons had indicated their willingness to cover their share of treatment, so far, only one of the approached cantons has financially contributed to EIBI. The other cantons either see legal obstacles in the way of contributing by indicating that when the intervention is run by a psychologists it is considered psychotherapy which is a medical and not an educational intervention so that they are legally prohibited to pay for services; or they argue that their support for families with a child diagnosed with autism is already sufficient. This leaves all the families living in the other cantons paying for over half of the expenses for early intensive intervention. The service providers try to assist the families in finding supportive associations that pay for at least part of the expenses. Since not every family gets a treatment place in one of the designated centres, parents have to look for a private EIBI provider and are left with paying the full cost of the intervention. In conclusion, despite many years of fighting for an adequate reimbursement of the high costs of EIBI and despite various court initiatives, the current situation of financing early intervention is still very unsatisfactory.
Early intensive behavioural intervention in Zurich
For more than 90 years, the Child and Adolescent Psychiatric Service (CAPS) of the canton of Zurich has served the needs of children and adolescents with mental disorders. The service is financially subsidized by the government of the canton and contributes to teaching and research as a Department of Child and Adolescent Psychiatry, University of Zurich. The institution has some 400 employees offering outpatient, day-clinic, and inpatient services for the entire canton of Zurich. This year, the CAPS merged with the Department of Adult Psychiatry by forming the Department of Psychiatry, University of Zurich.
Based on joint initiatives by an American father of a child with autism living in the canton of Zurich and the director of the CAPS, EIBI was initiated in Zurich in 2004. It soon became necessary to expand the program. Therefore two psychologists were sent for a year-long training to the Lovaas Institute in New Jersey in order to become EIBI supervisors.
After returning from training in the USA, the psychologists started the EIBI program in Zurich by translating treatment guidelines into German and adapting the program to the local needs. Since minimum salaries are rather high in Switzerland and intervention costs had to be kept affordable, the program was set up in collaboration with the University of Zurich, starting a University based internship for undergraduate psychology students to work as co-therapists. Unlike other internships, this was a part time internship spread out over a longer period of time. Co-therapists worked two to three sessions a week with one child for at least one year.
Furthermore, the two psychologists started teaching a University course on EIBI within the masters program of clinical psychology. Close supervision of the EIBI program was performed by Linda Wright, the clinical director of the Lovaas Institute, twice a year for a week and with a frequent exchange of e-mails.
The CAPS offered two intervention models that were implemented in the families’ home: one for families that lived near the clinic with intensive supervision and one for families that lived further away (more than an hour from the clinic) with remote supervision. For the intensive supervision model, the intervention team consisted of co-therapists employed by the CAPS. There was a two-hour team meeting every other week, where bigger adaptations to the program were discussed and demonstrated. Smaller adaptations could be made by the more experienced co-therapists throughout the week. The children received up to 30–35 h a week which averaged at about 25–30 h due to illness, vacation, therapist turnover and other unforeseen losses. Most of this time was spent at a rate of one child and one co-therapist. In the course of the two years of intervention, some of the children (7/23) started kindergarten. The intervention model for those kids stayed the same if the number of intervention hours a week were 15 or more.
The parents were involved in the intervention and were full team members and co-therapists for at least the first 6 months of intervention. After that, the focus usually changed to everyday life goals. But both parents still were required to be part of the intervention and to learn to teach their child effectively. Unfortunately, the parents were often not as involved in the intervention as we would have wanted them to be. This had an impact on generalizing treatment goals to everyday life and maintaining skills.
In the remote supervision model, the parents hired their own co-therapists and the team met about once every four weeks for a four-hour team meeting, which included the training of the co-therapists. The parents were free to choose how many hours of intervention they wanted to do and how involved they wanted to be. It was often difficult for families to find affordable co-therapists to get up to 35 h a week. Treatment progress was monitored closely and a more extensive evaluation in terms of quality control was made after the first four children had finished two years of intervention. Many changes were made to the intervention by realizing that the team had relied too much on discrete trial teaching and had neglected incidental or natural environment teaching. Instead of starting by working on compliance and discrete trial teaching we started to teach requesting first and spent more time on pairing. Parents were also involved more in the program and there was a greater focus on teaching in a more generative way.
With little support and possibility to connect with other behaviour analysts in Switzerland, the urge for further education was strong. Thus, Eric Larsson, executive director of the Lovaas Institute Midwest, was hired as a second supervisor. Supervision frequencies were changed to an annual visit and Skype supervision every other week. Four of the Zurich psychologists took the coursework to become Board Certified Behaviour Analysts, two of them took the exam and are now BCBAs. The other two meet all the requirements to take the certification exam but have not taken it yet. At the end of 2015 a third BCBA who had learned and trained in Ireland and Germany could be hired.
One of the major obstacles we faced was the recruitment and the training of the co-therapists. Because the salaries are not competitive, we have very dedicated and reliable staff but also a large turnover. New staff has to be trained every couple of months, which takes up a large part of the available supervision time. With staff only working a few hours a week, training new co-therapists took a very long time. In 2008, we started a more standardized training that initially was very similar to the training provided at the Lovaas Institute in the USA. Various adaptations were made over the years to make it more suitable for our needs.
Currently, we have a three-level training. The first and basic level consists of 23 h of lectures and about 8–10 h of lecture and role-play given by the supervisor in form of workshops at the beginning of working with a client. It is completed when a co-therapist has worked 250 h of 1:1 with a child, has taken part in regular team meetings, has learned to write reports, has completed all the lectures, and has passed a written and practical exam. The co-therapist then becomes an experienced therapist with a slight raise in salary and more responsibility and training possibilities within their working team. Many of the co-therapists then move on to working with another client. The experienced therapist further completes 23 h of lectures, gets trained in training new co-therapists and helps with the assessment and analysis of behaviour. After completing requirements and passing a written and practical exam, this advanced level of training is completed.
Ideally every client’s intervention team has one senior co-therapist. This co-therapist has passed the advanced level training and helps with training the team of co-therapists and stakeholders under the supervision of the supervisor. The senior therapist has the possibility to participate in an assistant supervisor course, which consists of 60–70 h coursework plus reading assignments, learning to use different assessment tools, and learning to write long and short-term goals for individual learners. The assistant supervisor course is completed after a written and a practical exam have been passed. The position of an assistant supervisor can then be pursued. Because it has been difficult to recruit enough senior therapists and assistant supervisors, not every team had these more skilled therapists.
The basic level courses are led by experienced or senior therapists under the supervision of the supervisors. The advanced level courses are led by senior therapists and assistant supervisors under the supervision of a supervisor. The assistant supervisor courses are led by supervisors. All three training levels include on-the-job training during 5-10% of the total hours spent working with the client. This standardized training increased the quality of training including treatment fidelity immensely, but with most of the co-therapists still working for only two sessions a week, the complete training takes them a long time and since salaries are not competitive the turnover is still high and most of the co-therapists leave after the first level of training.
After the Federal Social Security Office introduced the flat rate for early intervention, the supervision model for EIBI had to undergo further changes. The remote supervision model had to be dropped and the number of hours of supervision had to be decreased. Thus we could no longer provide the high level of supervision for the co-therapists which is essential to the high quality of the intervention. A new position was introduced, namely, the assistant supervisor. This person runs the treatment program under the close supervision of the supervisor and especially does a lot of the staff training. Unfortunately, the flat rate only covers a large part of the cost of the supervisor and the families are left paying for the assistant supervisor in addition to the other co-therapists.
The supervisor oversees the program planning, training of the co-therapists and stakeholders, and meets with the parents for monthly meetings. The assistant supervisor meets with the supervisor every week to discuss the child’s specific goals, progress, problems and training of the team. Since its inception, the EIBI program at the CAPS has trained and supervised more than 200 co-therapists. The introduction of the flat rate brought many restrictions to our program like having a minimum number of hours of intervention a week and limiting availability of intervention to children diagnosed with infantile autism (and excluding children with atypical autism).
In sum, the Zurich model of EIBI is comparable to similar models implemented in other parts of the world with the same common features [
24]. These include a comprehensive and individualized treatment model, the use of behaviour analytic procedures to build functional repertoires and to reduce interfering behaviour, and the provision of one or more co-therapists with advanced training in ABA and experience with young children with autism directed treatment. Furthermore, the intervention follows typical developmental sequences when selecting treatment goals and short-term objectives, and expects the parents to actively participate as co-therapists in their child’s intervention. The delivery of treatment starts in a one-to-one fashion and has a gradual transitioning into small-group and large-group formats when warranted. In addition, the treatment starts in the child’s home and carries the skills over into other environments with gradual, systematic transitions into kindergarten. Finally, the intensive intervention includes 20–35 h a week with a duration of two years or more and starts in the preschool years.