Mental health needs and availability of mental health care for children and adolescents with intellectual disability in Berlin.
Half of Berlin youth with ID have serious emotional problems yet parents find no trained help.
01Research in Context
What this study did
The team asked Berlin teachers and parents about kids with intellectual disability. They wanted to know how many had big emotional or behavior problems. They also asked if families could find mental-health help.
Teachers filled out a short checklist for each child. Parents answered questions about service use and quality.
What they found
Half of the youth showed serious emotional or behavior problems on the teacher forms. Parents said the same kids had trouble finding care. When services existed, staff often lacked ID training.
How this fits with other research
Einfeld et al. (1996) saw the same gap earlier. In Australia, 40 % of kids with ID had major disorders, yet fewer than 10 % saw a specialist. The Berlin numbers repeat the story almost twenty years later.
Whitehouse et al. (2014) followed the problem into adulthood. Most young adults with ID still lived at home and parents stayed stressed. Together, the three papers show the service gap starts young and never closes.
Duerden et al. (2012) add a twist. Their review found that South Asian families in the UK used mental-health services even less than White families. So unmet need is global, but race and culture can widen it further.
Why it matters
You already screen for skill deficits. Add a quick mood and behavior check each quarter. If scores look high, write a referral that says “ID-trained clinician needed.” This small step pushes agencies to build the expertise parents still can’t find.
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02At a glance
03Original abstract
BACKGROUND: The increased risk of mental health problems in children and adolescents with intellectual disability (ID) has been reported in several studies. However, almost no research has been conducted on parents' experiences with the general mental health system. We have investigated the prevalence of emotional and behavioural problems in children with ID as well as the availability and quality of mental health care from the parents' point of view. METHODS: Teachers of specialised schools for ID in Berlin were asked to complete the Teacher's Report Form (TRF) of the Child Behavior Checklist. Information was collected for 1226 children and adolescents aged 6-18 years with mild to profound ID (response 70.5%). The availability and quality of mental health care was assessed by a questionnaire given to parents who had already been seeking help for their children. A total of 330 parents completed the questionnaires (response 62.0%). In addition to univariate analysis, we conducted multiple logistic regressions regarding the psychopathology reported by teachers (TRF-syndrome scales) and difficulties concerning mental health care reported by parents for a paired sample of 308 children. RESULTS: Overall, 52.4% of the children and adolescents with ID had a total problem score on the TRF in the deviant range (47.1% when eliminating four items reflecting cognitive deficits). Compared with the general population normative sample of children, this is a three-time higher prevalence. The most striking problems were thought problems (schizoid and obsessive-compulsive), aggressive behaviour, attention problems and social problems. Parents whose children had more severe behavioural or emotional dysfunction reported more difficulties with the mental health system. From the parents' point of view, mental health professionals frequently did not feel responsible or were not sufficiently skilled for the treatment of children with ID. As a consequence, 96% of all parents were longing for specialised in- and outpatient services. CONCLUSIONS: This study confirms the findings from other studies regarding the high rate of co-occurrence of ID and mental health problems in youths. Results indicate that both are strongly requested by parents: specialised in- and outpatient services, as well as more professional general services and equitable treatment for all children, with and without ID.
Journal of intellectual disability research : JIDR, 2015 · doi:10.1111/jir.12185