Mental health needs and availability of mental health care for children and adolescents with intellectual disability in Berlin.

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Journal of Intellectual Disability Research

doi: 10.1111/jir.12185

983 volume 59 part 11 pp 983 –994

NOVEMBER

2015

Mental health needs and availability of mental health care for children and adolescents with intellectual disability in Berlin B. Soltau,1 J. Biedermann,2 K. Hennicke3 & T. Fydrich1 1 Institute of Psychology, Humboldt-Universität zu Berlin, Berlin, Germany 2 Institute of Forensic Psychiatry, Charité – University of Medicine Berlin, Berlin, Germany 3 Institute of Curative Education and Social Therapy, Evangelische Fachhochschule Rheinland-Westfalen-Lippe, Bochum, Germany

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 Correspondence: Mrs Bettina Soltau, Institute of Psychology, Humboldt-Universität zu Berlin, Unter den Linden 6, 10099 Berlin, Germany (e-mail: [email protected]).

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

© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd

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984 B. Soltau et al. • Mental health needs and availability of mental health care

services, as well as more professional general services and equitable treatment for all children, with and without ID. Keywords children and adolescents, emotional and behavioural problems, general vs. specialised services, intellectual disability, mental health needs and care

Introduction Children and adolescents with intellectual disability (ID) (from now on children stands for both) are more vulnerable to mental health problems. Several studies using informant checklists have documented a three to four times higher prevalence of emotional and behavioural problems compared with typically developing children (e.g. Einfeld & Tonge 1996; Dekker et al. 2002; Koskentausta et al. 2004). Other researchers examined Diagnostic and Statistical Manual of Mental Disorder (DSM)- or International Classification of Disease (ICD)-based diagnoses in representative samples. Using a standardised psychiatric interview, Dekker & Koot (2003) found that a total of almost 39% of the children and adolescents met the criteria for at least one DSM-IV disorder. Emerson & Hatton (2007) conducted a population-based study and found that 36% had at least one ICD disorder compared to only 8% in children without ID. In a recent review on children with ID and mental health problems, Einfeld (2011) explored nine studies with a relative risk of mental disorder associated with ID ranging from 2.8 to 4.5 for children with ID compared with the general population. Children with mental health problems, both with and without ID, have a high risk of these problems continuing into adulthood. International findings indicate a high persistence of psychopathology among children of normal intelligence (Ihle & Esser 2002; Costello et al. 2005) and – at a substantially higher level – in children with ID (Chadwick et al. 2005; De Ruiter et al. 2007). In a 14-year longitudinal study, Einfeld and colleagues showed that about two-thirds of youths with ID and psychopathology continued with mental health problems into adulthood (Einfeld et al. 2006). Despite the high prevalence, only a small percentage of these cases were treated professionally. For

their Dutch sample, Dekker & Koot (2003) found that less than one-third of the children with ID, who met the criteria for DSM-mental disorders, received mental health treatment. In Einfeld’s Australian study, only 10% were found to have experienced professional help (Einfeld et al. 2006). Similarly, in Germany, mental health care for children with ID is described as being insufficient (Häßler 2007). Even in community paediatric centres, which were established for children with developmental delay and those with disabilities (not only ID), parents or care givers often do not find specialised knowledge regarding diagnosis and treatment of children with mental health problems (Sarimski 2011). Based upon a detailed survey of German clinics for child and adolescent psychiatry, Hennicke (2008) found an average prevalence of 6% in- and outpatients with ID. Specialised inpatient units for children with ID were available at only 8% of the hospitals; however, 83% of the study participants would prefer specialised mental health inpatient services, at least one for each of the 16 German states with an overall population of 80 million. The clinic professionals graded the treatment situation for children with ID in their own clinics as a 4 on a school grade (1 for excellent to 6 unsatisfactory). They graded even a 5 for the treatment situation for children with ID regarding outpatient psychotherapeutic therapies. Very little research has yet been conducted on special needs and mental health services for children with ID and psychopathology. Douma et al. (2006) investigated the needs of parents whose children with ID had additional emotional and/or behavioural problems. Several needs were frequently unmet, among them ‘parental counselling’, as well as ‘child mental health care’ (less than 41% met need). In a study on mental health services for people with ID in Canada, Lunsky and colleagues found that specialised mental health services available to young patients with ID seem to be even more limited than services available to adults (Lunsky et al. 2007). For adults with ID, lots of studies have compared the effectiveness of specialised mental health services for people with ID with general services. Jess et al. (2008) conducted a cross-cultural study for the UK and Australia as models of service provision differ between these countries. They found that the


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UK specialist ID model has advantages over the Australian generic mental health model when comparing psychiatrists’ knowledge and competencies, as well as service quality and accessibility in meeting the mental health needs of people with IDs. Other studies found advantages for people with ID being treated by general psychiatrists and psychologists (e.g. Hassiotis et al. 2001). Chaplin (2009) reviewed 28 papers and found that there may exist improved opportunities for people with borderline ID within general mental health services. However, people with severe ID had reduced access to general mental health services. He concluded that provision of general services without additional specialised help is not sufficient to meet the needs of people with ID. Mental health care is not only a question of accessibility to services but also of attitudes and knowledge of mental health professionals. Only those professionals who consider themselves well prepared enough to meet the special health needs of these patients will provide treatment. In a recent review, Werner & Stawski (2012) summarised the findings of studies examining knowledge, attitudes and training of mental health professionals on dual diagnosis of ID and mental disorder. Their findings indicate a strong need to improve the knowledge, competence and attitudes of practitioners within the field of ID and mental health care by training and practice opportunities. Up to now, there is only one study on prevalence of mental health problems of children and adolescents (6–18 years) with ID in Germany; however, Theunissen & Schirbort (2004) did not use a standardised measure. Therefore, one objective for this study was to assess the prevalence of mental health problems by means of a well-established standardised questionnaire to make results comparable to those from other countries. The main objective of the present study was to examine how well the general mental health system performs for children with ID and their families (as there are neither innor outpatient specialised mental health services in Berlin). We were especially interested in parents’ opinion about specialised vs. general mental health services for their children in times of inclusion of people with ID in society. With the help of a paired sample – teachers’ rating of psychopathology and parents experiences with mental health professionals

– we wanted to explore whether the kind or severity of emotional or behavioural problems had any influence on getting mental health care.

Methods Samples and procedure In Berlin with its 3.5 million inhabitants, there are 20 specialised schools for pupils with ID. The majority (84%) of all children with ID attended these schools in 2011. Additional 373 (16%) of pupils with ID attended ID classes in schools with an integrative approach or were integrated into general classes (Senatsverwaltung für Bildung, Jugend und Wissenschaft 2012). Eighteen of these 20 schools for pupils with mild, moderate, severe or profound ID supported the present study. In addition, two ID classes from a school with an integration approach and some pupils with ID who were integrated in normal classes at this school participated in the study. As well, all 40 ID pupils from a school for the blind were included in our sample. After the headmaster had given their written consent to participate in the study, the state agency of schools in Berlin checked the legal and ethical principles. After the successful approval of the study, 1740 sets of questionnaires were distributed to the teachers, each of them referring to one child. The set consisted of the Teacher’s Report Form (TRF) (Achenbach 1991a) and a questionnaire for parents. The parents’ questionnaire was given only to those parents who had already tried to find treatment for emotional or behavioural problems of their children (n = 532). The TRF was completed for 1308 pupils with ID. According to the manual, we excluded 66 TRF questionnaires because they had more than eight missing item values. We additionally excluded 16 TRF questionnaires because they were lacking information regarding sex and/or age, which were needed to decide whether the children were scoring in the deviant range of the dichotomised TRF scales (normal vs. borderline/clinical range). The final response rate for the teachers’ questionnaire (TRF) was 70.5% (n = 1226). The children of the sample were aged between 6 and 18 years, with a mean of 12.2 (SD = 3.3). The gender ratio was 1 : 1.6


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(39.8% female to 60.2% male). The response rate of the parents’ questionnaire was 62.0% (n = 330). For 308 children, the TRF as well as the parents’ questionnaire were completed (paired sample).

Instruments The TRF of the Child Behavior Checklist (CBCL; Achenbach & Rescorla 2001) belongs to most established and well-researched instruments in order to measure emotional and behavioural problems in 4to 18-year-old youths. The CBCL/TRF are standardised rating scales consisting of 120 items to be rated 0 = not true (as far as known), 1 = somewhat or sometimes true or 2 = very true or often true. The items give scores to eight syndrome scales: Withdrawn (9 items), Somatic complaints (9 items), Anxious/ depressed (18 items), Social problems (13 items), and Thought problems (in the German version called ‘schizoid/obsessive–compulsive’) (8 items), Attention problems (20 items), Delinquent behaviour (9 items) and Aggressive behaviour (25 items). Three syndrome scales – Withdrawn, Somatic complaints and Anxious/Depressed – create the broadband factor Internalising. The broadband factor Externalising is represented by the two syndrome scales: Delinquent behaviour and Aggressive behaviour. A Total problem score includes the eight syndrome scales and some items that do not belong to any syndrome scale. For the TRF, the last 2 months need to be taken into consideration. The German version of the TRF is a translation of the American original and has been done with the assistance of the German-speaking author of the American original (Döpfner et al. 1994). Good to satisfactory reliability and validity have been confirmed for the German CBCL and TRF (Döpfner et al. 1997; Schmeck et al. 2001). Up to now, there are no German norms for the TRF available, so raw TRF scores have been transformed into T-scores using US norms. However, there is evidence of cross-cultural validity of CBCL/TRF scales, items and norms (Achenbach et al. 2008). Regarding internal consistency, good to satisfactory reliability of the TRF scales could be demonstrated in our sample; we found Cronbach’s alphas ranging from 0.64 to 0.95. According to Kline (2011), the internal consistency of three scales (Aggressive behaviour, Externalising, Total problem

score) can be rated as excellent (0.9 ≤ α ≤ 1), another three scales (Anxious/depressed, Attention problems, Internalising) as very good (0.80 ≤ α ≤ 0.89) and two scales (Withdrawn, Delinquent behaviour) as adequate (0.70 ≤ α ≤ 0.79). Lienert & Raatz (1998) defined the minimum limit for group statistical analyses to be α ≥ 0.50. As the remaining three scales (Somatic complaints, Social problems and Thought problems) have alphas larger than 0.60, all scales can therefore be used. Compared with a German general population sample (Döpfner et al. 2011), values for internal consistency were very similar and underline the applicability of the instrument to children with ID. We have decided to use an instrument developed for the general population to assess behavioural and emotional problems in children and adolescents with ID: This is not without difficulties, as there are certain behavioural problems such as self-harming behaviours, autistic behaviours and stereotypies that are more common in children with ID, especially in those with more severe levels (Borthwick-Duffy 1994). These behavioural problems are not sufficiently represented in instruments designed for typically developing children (Dykens 2000). This poses a risk of underestimating psychopathology. On the other hand, there are some items in the TRF rating scale that mainly reflect cognitive deficits, e.g. Difficulties in learning [49], Bad at school [61], Difficulties in speaking [79] and Acts too young [1] (items abbreviated). For three of these items (Acts too young, Difficulties in learning, Difficulties in speaking), Dekker et al. (2002) found high odds ratio (ORs) for children from the general population sample vs. children with moderate to mild ID. In order not to overestimate the prevalence and to emphasise a conservative approach, we conducted the total problem score with and without these four items mainly reflecting cognitive deficits. The parents’ questionnaire is a 30-item measure with mostly closed questions, some semi-open questions and one open question at the end to give the parents the chance to add extra information concerning their wishes. We designed the parents’ questionnaire based upon interviews with parents of 15 children with ID and maladaptive behaviour psychopathology. All of these parents already had experience with the mental health system and were referred to the research team by the headmasters of


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the participating schools. The questionnaire begins by asking where parents have looked for help concerning emotional or behavioural problems of their children, followed by questions about child characteristics and experiences while searching for mental health care. In the second part, we ask about general experiences with psychologists and psychiatrists; the third part asks for detailed information about treatment experiences with psychologist, psychiatrists and clinics for child and adolescents psychiatry. In the last part of the questionnaire, we ask for the parent’s opinion about specialised vs. generic mental health services for their children.

Data analysis Teacher’s Report Form Descriptive data analyses were performed to describe sample characteristics and the prevalence of mental health problems according to the TRF. Children with a T-score ≥60 on the Total problem score, Internalising broadband score and Externalising broadband score are classified to be in the deviant range. For syndrome scales, the T-score has to be ≥67. Parents’ questionnaire and paired sample We performed descriptive data analyses of the items of the parents’ questionnaire. In doing this, we dichotomised (no/yes) some variables that originally had four rating scale categories. The corresponding grouping of categories is reflected in the variable labels (see the Results section). To detect whether kind and severity of behavioural and emotional problems increased the likelihood of difficulties in achieving mental health care, univariate logistic regressions were performed for all TRF scales. Therefore, we dichotomised the TRF scales according to the cut-offs of the corresponding deviant range. As well, sex and age were considered as relevant covariates. In addition, we performed multiple logistic regression analyses with all significant variables from the univariate analyses to identify those variables with unique associations. The reported ORs of the regression analysis reflect the increased likelihood of problems reported by the parents in dependence of the TRF scales. ORs can be classified as small effects above 1.5, as medium effects

above 2.5 and as large effects above 4 (Rosenthal & Rosnow 2008).

Results Teacher’s Report Form: scale scores 52.4% of children were in the deviant range of the Total problem score (95% CI: 49.6–55.2). Compared with the general population normative sample (children without ID; Achenbach 1991b), this is more than a threefold prevalence of behavioural and emotional problems [risk ratio (RR): 3.3]. Additional analyses without four items representing mainly cognitive deficits resulted in still 47.1% of the children in the deviant range. Table 1 shows the percentages of children in the deviant range of all TRF scales, as well as the corresponding RRs and the ORs compared with the general population normative sample. The risks of children with ID to show deviant emotional or behavioural problems were especially high for Thought problems, Aggressive behavior, Attention problems, Social problems and for the Total problem score.

Parents’ questionnaire According to the parents’ questionnaire, most parents went to general practitioners/paediatricians

Table 1 Percentages of children and adolescents scoring in the deviant range; relative risks (RRs) and odds ratios (ORs) for children and adolescents for Teacher’s Report Form (TRF) scales compared with a normative sample

TRF scales

% in deviant rangea

RR

OR

Withdrawn Somatic complaints Anxious/depressed Social problems Thought problems Attention problems Delinquent behaviour Aggressive behaviour Internalising Externalising Total problem score

9.4 (7.8–11.0) 12.6 (10.7–14.5) 10.0 (8.3–11.7) 17.2 (15.1–19.3) 25.0 (22.6–27.4) 18.2 (16.0–20.4) 9.4 (7.8–11.0) 20.4 (18.1–22.7) 33.1 (30.5–35.7) 46.6 (43.8–49.4) 52.4 (49.6–55.2)

1.88 2.52 2.00 3.44 5.00 3.64 1.88 4.08 2.09 2.94 3.30

1.97 2.74 2.11 3.95 6.33 4.23 1.97 4.87 2.62 4.63 5.84

a T ≥ 67 for syndrome scales, T ≥ 60 for Total problem score, Internalising and Externalising (95% confidence interval).


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when seeking help regarding the mental health problems of their children (see Table 2). Consultations with mental health professionals {psychologists [in social paediatric centres (SPC) or private practices], child psychiatrists (in SPCs or private practices)} were also common. However, further analyses also revealed that 26% of all parents did not go or were not referred to mental health professionals, but instead only consulted other practitioners (in addition to general practitioners, occupational therapists and speech therapists were also prominent among those being consulted). Table 3 shows the experiences of parents when seeking help for the behavioural and emotional problems of their child with ID. More than half of all parents reported that they were given no or little support to find psychiatric or psychotherapeutic treatment. About one in three needed four or more consultations before finding someone willing to offer treatment. Parents also reported about experiences of refusal or rejection, and nearly one quarter reported being sent away by psychologists or psychiatrists. In more than half of the cases, the reported reason was that the mental health professionals did not feel competent or responsible for children with ID. There were also reports of no treatment after diagnosis. Nearly half of these cases reported that

consulting mental health professionals considered behavioural or emotional dysfunctions as part of the ID. From the parents’ point of view, mental health professionals are not familiar with or prepared to treat patients with ID and mental health problems. Table 4 shows the results of the evaluation of child and adolescent mental health services and the reasons why parents did not use professional mental health services. Whenever parents had used these services, they gave positive ratings for all three kinds of mental health service providers, with especially positive ratings for psychologists. Those parents who had not used professional services quite often mentioned that they had not thought of this opportunity or that they did not consider this professional group as being relevant for their children’s problems. On the other hand, nearly every fifth parent reported that they had renounced mental health services after professionals had told them that they were not familiar enough with children with ID. We asked the parents to vote for or against specialised mental health services (see Table 5). The three major arguments presented for specialised mental health services were each chosen by approximately three quarters of all parents. They refer to the following arguments: professionals would have specialised knowledge; professionals would be familiar with children with ID; and parents would

Table 2 Practitioners consulted by parents seeking help for mental health problems of their children

Table 3 Parents’ experiences when searching for mental health care

Practitioners

% (95% CI)

General practitioner/Paediatrician Psychologist/Psychotherapist in SPCs Psychologist/Psychotherapist in private practices Doctor for child/adolescent psychiatry in SPCs Doctor for child/adolescent psychiatry in private practices Occupational therapist Speech therapist Music therapist Horse riding therapist Curative educator Others

74.2 (69.5–78.9) 41.9 (36.6–47.2) 16.1 (12.1–20.1) 35.4 (30.3–40.5) 17.7 (13.6–21.8) 46.3 (40.9–51.7) 41.0 (35.7–46.3) 12.1 (8.6–15.6) 7.8 (4.9–10.7) 6.2 (3.6–8.8) 20.2 (15.9–24.5)

n = 322. SPC, sociopaediatric centres (community paediatric centres). Multiple answers were possible (95% confidence interval).

Item

%

n

No/Only small support 4 or more places to go Feeling (at least) a little rejection or refusal Being sent away by psychologist/psychiatrist Because: No space availablea Not feeling competent or responsible No treatment after diagnosis Because: Behavioural dysfunction is part of IDb Time until some improvement/relief over 2 years Not or a little familiar/prepared to patients with ID

52.1 33.8 42.3 23.1

311 216 307 247

35.1 54.4 26.7 49.2 26.3 46.0

57 57 187 50 228 298

Note: The number of cases (n) generally varied due to missing values. a Only cases were included when parents had been sent away. b Only cases were included when there was no treatment after diagnosis.


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Table 4 Evaluation of child and adolescent mental health services

Psychologist (n = 162) (Mainly) good experiences No experiences because: not thought of the possibility people with ID cannot be helped there only drugs as therapy upon request no experience with ID

Psychiatrist (n = 153)

Clinic (n = 83)

83%

73%

61%

40.0% 33.8% – 18.5%

39.3% 19.6% 19.6% 14.3%

34.0% 31.4% 14.3% 11.4%

ID, intellectual disability.

Table 5 Attitudes towards specialised vs. general mental health services

Pro

%

Contra

%

Therapists/Physicians would be familiar with children with ID One would know who to approach in case of mental health problems Children with ID would be welcomed unreservedly

80

People with ID can be treated by all therapists/physicians A specialist outpatients clinic would mean more travelling time My child should be treated together with children without ID Special offers for people with ID should be a thing of the past Local therapists and physicians would not feel obliged anymore Other reasons

14

My child would be treated by therapists with specialised knowledge General therapists and physicians are often overtaxed with children with ID Other reasons

74 67 82 49 14

19 19 8 19 3

n = 254. ID, intellectual disability.

know whom to approach in case of mental health problems. The most important arguments against specialised mental health services were each chosen by about 20% of all parents. These were the following: the preference that their child with ID should be treated together with children without ID; longer travel time; and the fear that local mental health professionals would not feel obliged to treat children with ID anymore. We asked the parents to sum up their arguments: 94.4% were longing for specialised in- and outpatient services. Even more (96%) wanted to have both: specialised services for the treatment of particularly difficult cases as well as general mental health services for their children with ID. 93% of the parents were seriously hoping for improved initial training for all mental health professionals in the field of patients with ID.

Associations between Teacher’s Report Form and parents’ questionnaire (paired sample) Table 6 shows the associations between TRF scales, sex, and age and the problems that parents reported when searching for help. The TRF scales Withdrawn, Social problems, Attention problems, Delinquent behaviour, as well as the Broadband factor Internalising were not significantly associated with any problems and therefore were excluded from this table. There was a statistically significant association between parents’ experiencing rejection or refusal and aggressive behaviours and male gender of the child. According to the multiple regression, both aggressive behaviour and male gender are associated independently with the risk of feeling rejected by mental health professionals (P < 0.05). The risk of experiencing professionals who had no sufficient


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Table 6 Odds ratios for variables related to having a particular type of problem

Type of problems

Variables

Feeling of rejection or refusal

No sufficient knowledge/ experience

TRF scale II Somatic complaints TRF scale III Anxious/depressed TRF scale V Thought problems TRF scale IX Aggressive behavior

No/Little treatment success

2.3 (1.0–5.0)

2.1 (1.1–4.1) 1.9 (1.0–3.7)†

2.0 (0.9–4.4)† 1.8 (1.1–2.9)

2.2 (1.2–4.0) 2.0 (1.0–3.7)

1.7 (1.1–2.8)

1.8 (1.1–3.0) 1.9 (1.1–3.1)

TRF scale Externalising Gender Male

2 or more years until some relief

1.7 (1.0–2.7) 1.5 (0.9–2.5) 1.6 (1.0–2.6)† 1.7 (1.0–2.7)

Notes: Significant results from univariate and multiple (bold) logistic regression analyses (all P < 0.05, except † P < 0.10). Values represent odds ratios (95% confidence interval).

knowledge and practice in the field of ID and mental health care was associated with prevalent thought problems of the children. Thought problems, as well as somatic complaints and the externalising factor, were independently associated with treatment difficulties (2 or more years time until at least some improvement or relief, and no or little treatment success).

Discussion We investigated the perceived adequacy of the general mental health system in relation to children with ID and their families, as well as the prevalence of emotional and behavioural problems of these children in 18 specialised schools in Berlin (Germany). We also looked to identify assumed associations between the severity and different kinds of emotional or behavioural problems in children with ID and parents’ difficulties with the mental health system.

Prevalence of emotional and behavioural problems In our sample from Berlin, 52% of the children with ID had a total CBCL-TRF score within the clinical range (at least one SD above the mean of a nonclinical population). Therefore, this study confirms the findings from other studies using the CBCL/ TRF: Dekker et al. (2002) found 50% in a Dutch sample. In Finland, Koskentausta et al. (2004), who had also used this instrument, found 43%. One could argue that these high prevalence rates were possibly caused by the fact that an instrument was used that was designed to measure emotional and behavioural problems in typically developing children. However, Einfeld & Tonge (1996) used the DBC (Einfeld & Tonge 1995), an instrument developed for children with ID for their Australian sample, and found 40.7% in the clinical range. In a British sample of children with severe ID, Cormack et al. (2000), also using the DBC, found 50.4% in the clinical range, very similar to our result measured with an instrument developed for children


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without ID. Nevertheless, we decided to conduct a second total problem analysis as some of the CBCL/TRF items reflect mainly cognitive deficits, e.g. Difficulties in learning [49], Bad at school [61], Difficulties in speaking [79] and Acts too young [1] (items abbreviated). For three of these items, Dekker et al. (2002) found high ORs for children from the general population sample vs. children with moderate to mild ID: Acts too young OR: 9.6 (95% CI: 7.1–13.0); Difficulties in learning OR: 11.3 (95% CI: 8.0–16.1); and item Difficulties in speaking OR: 15.9 (95% CI: 11.3–22.3). In Dekker’s item analysis, there was only one item with an even higher OR: Repeats actions [66] OR: 25.5. As this does not reflect cognitive deficits but clearly a psychopathological symptom, we did not exclude it from our second total problem score analysis. Instead, we included the item Bad at school [61], even though in Dekker’s item analysis, the OR was less than 3.0. While studying the completed TRFs, we realised that this item was difficult to rate for participating teachers as could be seen by frequent missing data as well as a rating of ‘2’ (very true or often true) with the remark ‘ID!’, indicating that they compared their pupils with typically developing ones. Therefore, this item was not included in the computation of the total problem score analysis. However, the prevalence rate for the estimation of mental disorders was only slightly reduced to 47%. Therefore, both results – with and without items reflecting cognitive deficits – underline the findings of others in this field, showing more than a threefold risk of mental health problems for children with ID compared with the general population. With a similar sample size as in the present study and use of the same questionnaire (TRF), Dekker et al. (2002) reported that almost 50% had a total problem score in the deviant range compared to 18% for their comparison group – children without ID. Therefore, our study confirms the results of the Dutch study with 52% within the clinical range in our study. Despite the similarities with the Dutch study, some differences are important. Our study did not include children with borderline ID, as these children have their own special schools located separately from the schools for children with ID. However, we included pupils from the lower IQ spectrum with severe or profound ID, as these children attend the same schools as children with mild

and moderate ID in Germany. So despite differences in the ID spectrum, the results remain comparable. As the risks for emotional and behavioural problems differ substantially across different problem areas, scores of single syndrome scales (two SD above mean of general population) are more informative than the Total Problem Score. An especially high risk for children with ID to show deviant behaviour could be found for thought problems (schizoid and obsessive–compulsive) and aggressive behaviour with a four- to fivefold increased relative risk. The risk of showing attention problems and social problems was increased three to four times compared with the general reference population. These four most striking areas of problem behaviour were the same as what Dekker et al. found in their Dutch study.

Mental health care for children with intellectual disability from the parents’ point of view According to our data, most parents seeking mental health care contacted a general practitioner or a paediatrician. This is quite common in Germany. The family doctor then refers the patient to a specialist, and in case of mental health problems, to a psychological therapist or psychiatrist. However, for our sample of children with ID, about one quarter of all parents who were seeking diagnosis and treatment for mental health problems were not referred to mental health professionals. Every second parent reported of little or no support when seeking mental health care, and about 40% even reported feelings of rejection or refusal against their child as a patient with ID. That seems to be an important reason for parents’ desire to obtain specialised mental health care, as two-thirds expect the attitude ‘Children with ID would be welcomed unreservedly’ as important for specialised inand outpatient services. About one out of three parents needed four or more contacts to professionals before finding someone willing to treat their child. Those who were sent away by psychologists or psychiatrists were often given the reason that the mental health professional did not feel competent to treat mental health problems in children with ID, rather than due to lack of treatment capacity. Additional


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justification for refusal of treatment was that emotional or behavioural dysfunctions were not disorders on their own but related to or caused by ID. Overall, parents had major problems in getting professional help for emotional and behavioural problems of their children. As a result, about three quarters of the parents agreed that the statement ‘One would know whom to approach in case of mental health problems’ was an important argument for specialised services. For about 80% of all parents, the most important arguments to establish specialised mental health services were that mental health professionals would be familiar with children with ID and that their child would be treated by therapists with specialised knowledge. When parents obtained mental health care for their child, they were mostly satisfied with psychologists, psychiatrists and clinics for child psychiatry. Those who did not consult mental health services often did not consider the possibility of seeking specialised help or they did not believe that children with ID could be helped by mental health professionals. This result indicates that not only some professionals but also a number of parents do not always consider mental health professionals as being the appropriate choice for the treatment of children with ID.

Associations between the kind and severity of emotional and behavioural problems and reported difficulties with the mental health system In our study, we additionally considered the question whether the kind or severity of mental health problems is related to the experiences parents have had with the mental health system. The results show that parents with children of increased behavioural and emotional problems as rated by their teachers reported more difficulties with the mental health system when compared to parents with children who had less behavioural and emotional problems. Additionally, aggressive behaviour, as well as male gender, increased the risk of experiencing rejection by the health care professionals. If a child was rated to have thought problems, this led to a higher risk for parents having experience with professionals who had insufficient knowledge and/or experience in the field of ID and mental health problems. Externalising problems and also somatic

complaints increased the risk of unsuccessful treatment. Even though the effects found in the multiple logistic regression analyses were small, the results indicate that the parents’ experiences are not single cases but represent a general problem. What could be done to improve this situation? More than 90% of the parents voted for each of the following proposals: Initial training for all future professionals in the fields of ID and mental health problems; specialised in- and outpatient clinics for children with ID; a twin-track solution, providing specialised services for severe cases, and for all other cases treatment for all children together – with and without ID – by local mental health professionals.

Strength and limitations of the study The major strength of this study is that parents and teachers of 18 of the 20 schools for the ID in Berlin participated. Therefore, data can be considered as representative for children with ID (mild to profound degree) in Berlin, as nearly all of the children attended these schools in 2011. By interpreting the results, one should take into account that the TRF is an assessment tool developed for children from the general population. There are some disadvantages using this questionnaire for the assessment of emotional and behavioural problems of children with ID, especially for those problems shown by children with severe and profound ID. However, the advantage is that we can compare children from our sample with children without ID to emphasise the special need of children with ID for mental health diagnoses and interventions (Sarimski 2007). As no instrument was available to answer the question of availability and quality of the mental care from the parents’ point of view, we constructed the parents’ questionnaire on the base of interviews with parents and on the literature and have therefore no data on psychometric parameters. Considering our study design, there is some risk of a general selection bias. Although the response rates were high for the TRF as well as the parents’ questionnaire, no response of teachers or parents could be associated with certain characteristics and could have influenced our results; e.g. that for those pupils from the lower ID spectrum teachers more often did not fill in the TRF as typical problem behaviours of these children are less well


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represented in the TRF, or that parents who had less problems with the mental health system less often filled in the questionnaire as they did not feel the relevance of the topic. Additionally, since questionnaires were not available in languages other than German, migrants with weak language skills were not able to participate in the study. Due to administrative conditions in participating schools, the selection of parents who had already had experience with seeking help for mental health problems was dependent upon the teachers’ assessment. Although they generally cultivate close relations with the pupils’ parents and the number of pupils is only seven to nine for two teachers, this might be subject to bias if parents did not disclose contact with services to school for confidentiality reason. As far as we know, this is the first systematic study investigating the accessibility and suitability of mental health care for children with ID. As this study emphasises, the needs of children with ID and behavioural or emotional dysfunctions are far away from being met, at least in Germany, and should optimally receive a lot more attention in the future.

Conflict of interest The Authors declare that there is no conflict of interest. We thank all participating teachers and parents for their time and effort and all headmasters from the participating schools for their assistance in organising the study.

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Accepted 7 December 2014


Ambulatory mental health data demonstrates the high needs of people with an intellectual disability: results from the New South Wales intellectual disability and mental health data linkage project.

Providing mental health care for children and adolescents.

intellectual developmental disorder.

Trends in mental health care among children and adolescents.

Interface between intellectual disability and mental health: hermeneutic review.

How should community mental health of intellectual disability services evolve?

Addressing the mental health needs of pregnant and parenting adolescents.

Mental health services for children and adolescents: challenges and opportunities.

Risk and Resilience Factors in the Mental Health and Well-Being of Women with Intellectual Disability.

Mental health and wellbeing in children and adolescents.

HIV, violence and women: unmet mental health care needs.

Parental disability, parent care, and offspring mental health outcomes.

Mental health care use in adolescents with and without mental disorders.

Management of patients with mental health needs.

Physical Punishment, Mental Health and Sense of Coherence Among Parents of Children with Intellectual Disability in Japan.

Racial health disparities among special health care needs children with mental disorders: do medical homes cater to their needs?

Mental health needs of Asians.

Inpatient Children and Adolescent Mental Health Services (CAMHS): outcomes of young people with and without intellectual disability.

Integrating primary mental health care and mental health promotion.

Risk factors associated with the mental health of fathers of children with an intellectual disability in Australia.

Physical health algorithms for mental health care.

African American adolescents and mental health care: a metasynthesis.

National trends in the mental health care of children, adolescents, and adults by office-based physicians.

Mental health services for children.