The Monitor: Cost and quality of autism care blind spot

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Monday, 16.November 2020 – 7:56 AM

The Monitor asked the ten largest municipalities how much they reimburse annually for autism care. This concerns treatments and therapies for children up to the age of 18, which have been reimbursed from the municipalities since the decentralization of youth care in 2015. Scientific studies show that one to one and a half percent of people have autism.

None of the ten largest municipalities appears to keep track of how much they spend on autism care.

Some of the responses: “As the municipality of The Hague, we do not keep records of diagnoses and disorders such as ASD (Autism Spectrum Disorder, ed.). The requested information cannot therefore be retrieved from our systems. ” Amsterdam: “As a municipality, we do not register the complaint or diagnosis for which a juvenile is being treated.” Eindhoven: “We cannot specify the health care costs for ASD separately.” Almere: “We do not keep track of the condition for which treatment is used in our figures.” Nijmegen: “We looked at it with a few people, but unfortunately these figures cannot be made transparent with us.”

Care economist Jochen Mierau, affiliated with the University of Groningen: “Ultimately, the children are the victims because they do not receive the care they should receive. You want that care to get a little better every year. You can only initiate this improvement process if you have the following figures: how many children have autism, what treatments they undergo, what were the costs and what were the consequences. ”

The Monitor has received more than two hundred tips from people who have spent years looking for the right treatment for their child with autism or for themselves. It often drives them to despair. There are dozens of treatments for people with autism, of which only a few are scientifically proven to be effective. This does not mean, however, that clients do not benefit from the other treatments. However, according to inquiries by De Monitor: nationally, municipalities and providers of autism care do not have hard data on the quality of the care provided. Tom van Yperen of the Netherlands Youth Institute: “It would be desirable if more information was available. For example, for parents with children with serious behavioral problems, they can see on the website of the municipality which institutions they can go to and which treatments clients are satisfied with. ”

Care economist Mierau sees a national registration system as a solution, in which the problems of the juveniles are recorded, the types of treatments, the costs incurred and the results of the treatments. Policymakers and researchers can use this information to constantly improve care. “I can imagine that if you have a better information system, the search by parents for the right treatment for their child with autism will be much shorter.”

Mierau designates the Association of Netherlands Municipalities (VNG) as the party that can initiate and design such a registration system. When asked, the VNG states the following in a written response: “The VNG considers the disadvantages of collecting national information at diagnosis level to be greater than the advantages. It requires an extra administrative burden to realize that. ”

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