Evaluation of the patient profile and health interventions offered by a multidisciplinary Intellectual Disability health team

Abstract

Specialised Intellectual Disability Health Teams enhance access to health services and improve intersectoral coordination. This study reviewed the profiles and healthcare recommendations for children and young adults with Intellectual Disability. Data was collected from clinical records and analysed using relevant statistical tests. Most children were referred for challenging behaviours, with 13.9% lacking a disability funding plan, and 60% requiring changes in medication. Three-quarters reported functional improvement at six months. A logistic regression model explained 55% of the variance in six-month outcomes, identifying adherence to team recommendations as a significant factor (p < 0.0001). This study highlights the patient profile of a Specialised Intellectual Disability Health Team, identifies gaps in care plans, and emphasises the importance of addressing complex social determinants to ensure effective enactment of these recommendations in partnership with families, ultimately improving outcomes for children and young adults with Intellectual Disability.

Keywords

children adolescents evaluation Intellectual disability multidisciplinary health teams

Introduction

Intellectual Disability affects 1.7% of Australia’s population (Bourke J et al., 2016), contributing significantly to chronic and complex health issues, particularly in children and young adults. Individuals with Intellectual Disability often have more comorbid medical and mental health conditions compared to their peers without Intellectual Disability (Bourke et al., 2017), including a higher prevalence of neurodevelopmental conditions such as Attention-Deficit Hyperactivity Disorder (affecting approximately 21%) and Autism Spectrum Disorder (affecting around 14%) (Oeseburg et al., 2010). Over half of the adolescents with Intellectual Disability exhibit challenging behaviours like aggressive behaviour (observed in 30%) (Emerson et al., 2001), and many require assistance in daily living activities (Westwood, 2010). They experience worse physical and mental health outcomes and are at higher risk of premature mortality than their peers without Intellectual Disability (Le et al., 2021).

Children and young adults with Intellectual Disability face difficulties advocating for themselves in healthcare environments and navigating available hospital and community-based services. These barriers contribute to delays in diagnoses, medical or psychological management, and limited uptake of essential allied health interventions, educational opportunities, and social services (Huber et al., 2022; Sapiets et al., 2021). Moreover, there is a scarcity of healthcare services tailored specifically for this population (Le et al., 2021). In Australia, Paediatricians play a crucial role in managing children with Intellectual Disability, overseeing medical evaluations, treatment and facilitating access to community-based agencies. However, there are limited established referral pathways for Paediatricians seeking management advice for patients with Intellectual Disability and complex behavioural or psychosocial issues (Delahunty et al., 2022). The transition from Paediatrician care to General Practitioners in adulthood introduces further challenges, often leading to untreated medical and psychological conditions and unaddressed social and financial concerns (O'Connell et al., 2003). Studies indicate that many young adults with Intellectual Disability and their caregivers engage well with General Practitioners for medical issues but lack trust in them regarding disability-related matters (Fredheim et al., 2011). This transition occurs during significant life changes such as finishing school and moving out of home, accompanied by increased social and functional demands. Previous research has noted a decline in the quality of adolescent healthcare during this transitional period (Franklin et al., 2019). Additionally, the adult healthcare system often lacks expertise specific to managing challenging behaviours when children with Intellectual Disability transition to adult health systems (Binks et al., 2007).

To address these challenges, a care model focusing on the needs of people with Intellectual Disability has been implemented in New South Wales, Australia. Previous studies on this model highlight the critical role of specialised multidisciplinary teams in enhancing access, coordination, and collaborative care for this population (Campbell et al., 2019). These teams have improved access to medical (e.g., immunisation such as supported COVID-19 immunisations for children with Intellectual Disability and challenging behaviours, and allied health interventions such as psychology and social work supports) and social services (e.g., support for National Disability Insurance Scheme funding) (Campbell et al., 2021; Garg et al., 2022). It is well documented in studies that disability services are often lacking in non-metropolitan areas, with rurality equating to lack of services, long waiting times, and extensive travel (Dew, 2022). In response to this, the New South Wales Ministry of Health has developed funding models for Intellectual Disability multidisciplinary teams across Local Health Districts, providing outreach to rural and regional areas (MOH, 2024).

These teams, known as the Specialised Intellectual Disability Health Teams, conduct assessments and formulate care plans for individuals with Intellectual Disability who have urgent health needs such as extreme challenging behaviours, psychiatric co-morbidities, dental health concerns and puberty onset related sexual health needs beyond the scope of their current care team. The referral to these services is made by a General Practitioner or other medical specialist (e.g. Paediatrician, or an adult specialist), mental health clinician, schools, and any other public health service clinician who has identified an unmet need for the child and family. The purpose of the referral is to support mainstream referring clinicians in providing health or social care for an unresolved complex or chronic health need that cannot be met by accessing usual care pathways. This could include managing comorbid diagnoses, advising on medications, facilitating access to community services, advocating for enhanced disability funding, and navigating post-school options. The service thus acts as both consultative as well as providing services for six to twelve months until resolution of the referring problem is made. The core team comprises a Paediatrician specialising in developmental disabilities, a Social Worker, and a Clinical Nurse Consultant, with access to a Psychiatrist and Adult Rehabilitation Medicine Specialist.

It is crucial to evaluate the recommendation practices of these Intellectual Disability teams to identify unmet health needs and enhance service delivery quality. This is important as there are several social determinants, such as single parent households and social disadvantage such as refugee status and non-English speaking families, that compound the barriers for health and social care for children with Intellectual Disability (Emerson, 2021; Kelly et al., 2009). We hypothesised that the Specialised Intellectual Disability Health Team will be able to provide support to people with moderate to severe Intellectual Disability missing out on assessments for challenging behaviours, aid in diagnostic formulations, and bridge the gap in those who are not accessing disability services. This evaluation would therefore provide insights into the current clinical practices, particularly for patients with complex healthcare needs due to Intellectual Disability. Additionally, it allows assessment of the care model’s effectiveness in improving outcomes for children with Intellectual Disability. We therefore examined the profile and recommendation practices of children and young adults with Intellectual Disability in the South Western Sydney Local Health District Specialised Intellectual Disability Health Team.

Study setting

In Australia, South Western Sydney Local Health District is one of the most disadvantaged areas, characterised by low socioeconomic status, limited employment and education opportunities, and a higher proportion of culturally and linguistically diverse residents compared to other parts of the country ((SWSLHD), 2019). This region also experiences a higher prevalence of people with Intellectual Disability, necessitating specialised expertise in working with this population (Carnemolla et al., 2020).

Disability services in the South Western Sydney local health district and Australia

There are several community paediatric clinics across the local health district, both in the public and private sectors, that can provide health care to children and young adults with Intellectual Disability. Adult health care is predominantly provided by General Practitioners, with assistance from relevant adult sub-specialists, such as adult Neurologists and mental health services. The district also offers dental services for individuals with Intellectual Disability.

The region supports the delivery of the Australian federal National Disability Insurance Scheme (NDIS), which facilitates disability support plans for all participants with lifelong permanent disabilities (both Physical and Intellectual Disability) (NDIA, 2024). These plans are administered by non-governmental organisations, such as Settlement Services International and Uniting Care, depending on the local suburb. Community Migrant Resource Centres are also available to provide support and information.

These plans are utilised by a host of allied health specialists, including Speech Pathologists, Occupational Therapists, Behaviour Support Practitioners, Social Workers, Dietitians, and Exercise Physiologists, and Support Workers to provide services for individuals with Intellectual Disability. Typically, families receive information about this funding and the associated disability plans from their managing clinicians and reach out to the NDIS agency for further information and support.

There are generally two pathways for accessing services. Children identified with global developmental delays who are under six years of age can access an early intervention pathway, which may transition into the disability pathway for those over six years old if ongoing permanent disability is established. Adults with acquired disabilities can begin accessing NDIS-funded services at any age. Despite the expectation that all children and adults will be able to access necessary disability services, several challenges impact access to care, including social vulnerabilities and a lack of trained service providers.

Methods

Data collection

The Specialised Intellectual Disability Health Team maintains a patient list in Microsoft Excel which is stored, and password protected securely in an internal server. The data entry is made by the Social Worker and Nurse Consultant from the team. The study was planned as a quality improvement retrospective chart review. For the purposes of this project data was extracted over 3 years; from June 2019 (when consistent data collection began after securing ongoing funding) to December 2022. The patient cohort included those under 21 years old, reflecting a paediatric focus while acknowledging the extended transition period to adult services for individuals with Intellectual Disability and complex health and psychosocial needs. All healthcare encounters by the Specialised Intellectual Disability Health Team were reviewed, and data was collected and entered into an Excel spreadsheet by a senior paediatric trainee with no involvement in clinical care of the patients. Data categories included demographic information (age, gender, ethnicity, primary language spoken at home, interpreter use, social factors such as single-parent households), referral reasons, waiting times, diagnosis and disability severity level, initial management details (medical, educational, disability supports), team assessments (including medical examination, height, weight, dental check as well as functional adaptive assessments), medication change recommendations, adequacy of disability supports, 6-month follow-up outcomes, and duration of team involvement.

Ethics approval

Institutional approval was granted by the district Quality Improvement Committee PCH01/2023/20 therefore a full ethics review was waived off. Consent was waived as there was no patient contact and all the collected data was de-identified.

Data analysis

Descriptive statistics were used for demographic data, reported in frequencies and proportions. Chi-square analysis was performed to explore differences between demographic variables (e.g., disability severity level by ethnicity, age, family history of neurodevelopmental and psychiatric disorders, and number of psychotropic medications). One-way Analysis of Variance (ANOVA) was used to analyse variations in wait times and duration of team involvement, with F-ratios indicating between and within-group variability (Blanca Mena et al., 2017).

The six-month follow-up outcomes were established through phone calls with the primary carer, who recorded their responses to questions regarding the full or partial resolution of their primary concern at the time of referral. This included improvements in manageable challenging behaviours, access to identified unmet health care (such as dental care), and other enhancements in access to allied health interventions or disability funding plans. If the carer reported no changes in circumstances, health, or behaviours, it was recorded as ‘same.’ If they reported a worsening of behaviours, it was recorded as a ‘worse outcome’. Logistic regression analysis assessed variables influencing six-month outcomes (when patients reported improvement in function compared to the same/deterioration in function), including duration of team involvement, age, adherence to team recommendations, medication changes, primary language spoken at home, disability severity, referral reasons, follow-up by specialist versus general practitioner, and single-parent household status. To facilitate data analysis, we used an age cut-off of 13 years, as this is the age of onset of puberty and often corresponds with the appearance of challenging behaviours in children with moderate-to-severe Intellectual Disability. Variables with p-values <0.05 were considered significant, and the Goodness-of-model fit was tested using the Hosmer-Lemeshow test. (Hosmer et al., 1988). Enter option (all variables entered in one step) was chosen. Missing data was managed by deleting variables list-wise. The imputation of missing data was not possible as most data points were categorical (ordinal or nominal variables). MedCalc Statistical Software version 19.2.6 (MedCalc Software, Ostend, Belgium; https://www.medcalc.org; 2020) was used for analysis.

Results

Demographics

Data was analysed from a total of 151 patients. Table 1 summarises the demographic data for the study cohort. The median age of new patients was 13 years (95% CI 12.67 – 13.97) and did not differ from children who were re-referred to the service. The majority of the cohort was 18 years and under (137/151, 90.7%), and 78.8% were boys.

Table 1.

Demographic profile of children and young adults seen by the service between June 2019- December 2022.

Characteristic (total = 151)	Frequency (% of total)
Age (Years)
Mean: 13.32 (95% CI 12.67 – 13.97), SD 4.06
Gender
Male	119 (78.8%)
Female	32 (21.2%)
Country of birth
Australia	84 (55.6%)
Middle east	35 (23.2%)
Iraq	16 (10.6%)
Asia	22 (14.6%)
Vietnam	12 (7.9%)
Other	10 (6.6%)
Primary language Spoken
English	108 (71.5%)
Arabic	19 (12.6%)
Vietnamese	9 (6%)
Assyrian	6 (4%)
Other	9 (6%)
Interpreter required
No	111 (73.5%)
Yes	40 (26.5%)
Refugee status
No	133 (88.1%)
Yes	18 (11.9%)
Aboriginal cultural Background
No	141 (93.4%)
Yes	10 (6.6%)
Department of Communities and Justice involvement
No	129 (85.4%)
Yes	22 (14.6%)
Housing location
Home (owned or rented)	129 (85.4%)
Department of housing	14 (9.3%)
Supportive accommodation	7 (4.6%)
Independent accommodation	1 (0.7%)
Living arrangements
Family	135 (89.4%)
Out-of-home care	11 (7.3%)
Group home	4 (2.6%)
Independent living	1 (0.7%)
Parents separated (n = 145)
No	78 (53.8%)
Yes	67 (46.2%)
Number of siblings (n = 144)
0	26 (18.1%)
1	51 (35.4%)
2	39 (27.1%)
3 or more	28 (19.4%)
Family history Of significant neurodevelopmental and psychiatric diagnoses (n = 150)
None	104 (69.3%)
Intellectual disability	16 (10.6%)
Autism spectrum disorder	12 (7.9%)
Attention-deficit hyperactivity disorder	4 (2.6%)
Psychiatric disorder (depression, anxiety, schizophrenia, bipolar)	14 (9.3%)

Most patients (55.6%) were born in Australia, with significant groups born overseas in Middle Eastern countries (23.2%) and Asian countries (14.6%). English was the primary language spoken at home (71.5%), followed by Arabic (12.6%) and Vietnamese (7.9%). An interpreter was required by 26.5% of patients. Priority populations constituted a significant percentage of our cohort, including patients with a refugee background (11.9%), Aboriginal Australians (6.6%), patients living in Department of Housing accommodation (9.3%), and requiring support from the Department of Communities and Justice (14.6%). Parents were separated in 46.2% of patient’s families. There was a family history of significant neurodevelopmental or psychiatric diagnoses in first to second-degree relatives in 30.7% of families.

Table 2 highlights major diagnostic comorbidities, including Autism Spectrum Disorder (64.9%) and Attention Deficit Hyperactivity Disorder (30.5%). Most patients seen were classified in the severe or profound range of Intellectual Disability (55.6%).

Table 2.

Diagnosis and level of disability of the cohort.

Diagnosis (total = 151)	Frequency (% of total)
Level of intellectual disability
Mild	24 (15.9%)
Moderate	40 (26.5%)
Severe	73 (48.3%)
Profound	11 (7.3%)
Nil	3 (2%)
Other neurodevelopmental/ psychiatric diagnoses on referral^a
Autism spectrum disorder	98 (64.9%)
Attention-deficit hyperactivity disorder	46 (30.5%)
Anxiety	36 (23.8%)
Oppositional defiant disorder	12 (7.9%)
Tic disorder/Tourette’s syndrome	6 (4%)
Depression	5 (3.3%)
Other medical diagnosis on referral^a
None	63 (41.7%)
Epilepsy	24 (15.9%)
Obesity	20 (13.2%)
Atopy (asthma, eczema, allergy)	15 (9.9%)
Vision impairment	7 (4.6%)
Hearing impairment	6 (3.9%)
Down’s syndrome	7 (4.6%)
Cerebral palsy	7 (4.6%)

^aSome children had more than one co-morbid diagnosis.

Referral information

The three common sources of referral were Paediatricians (43%), schools (18%), and mental health and other public health services (16%). The most common reason for referral was challenging behaviours such as aggression (61%), case consultation and opinion for management (23.2%), functional capacity assessment (9.3%), and diagnostic clarification (6.5%). Out of the cohort of 151 children, 36 (23.8%) were re-referred to the service, while 115 (76.2%) were seen for the first time.

The median waiting time for the service was 57 days (95% CI, 40.84 -79.16).

Prior management of the cohort

Table 3 highlights that almost two-thirds (66.9%) of children and young adults were on psychotropic medications upon referral. The most frequently prescribed medications included antipsychotics (45%), clonidine (23%), anti-anxiety/antidepressants (23%), and treatments for Attention Deficit Hyperactivity Disorder (15.2% stimulants, and 6% non-stimulants). Significant gaps in disability support were evident, with 13.9% of families lacking a disability funding plan, and only about half accessing disability support services. Approximately three-quarters of the cohort had received some form of allied health intervention. However, only about two-thirds of those who had finished school were connected to appropriate post-school programs at the time of the last clinic record.

Table 3.

Management before assessment by the Specialised Intellectual Disability Health Team.

Management type (total = 151)	Frequency (% of total)
Medications (psychotropic) on referral^a
None	50 (33.1%)
Single	45 (29.8%)
More than 2	56 (37.1%)
Anti-psychotics	68 (45%)
Clonidine	35 (23.2%)
Anti-depressants/anxiolytics	35 (23.2%)
ADHD treatments	32 (21.2)
Benzodiazepines	3 (2%)
Others	3 (2%)
NDIS approved (n = 150)**
Yes	129 (85.4%)
No	21 (13.9%)
Allied health interventions**
Speech therapist	77 (51.0%)
Occupational therapist	73 (48.3%)
Psychologist	68 (45.0%)
Exercise physiologist	5 (3.3%)
Dietitian	3 (2.0%)
None	41 (27.2%)
Receiving disability support service (respite, support worker, case worker)
Yes	76 (50.3%)
No	75 (49.7%)
School setting
Not attending	2 (1.3%)
Day care	3 (2%)
Primary school (mainstream)	9 (6%)
Primary school (support unit)	32 (21.2%)
School of special purposes	78 (51.7%)
Post-school day program (for those post-school) (n = 27)
Yes	17 (63%)
No	10 (37%)

^a(n), Risperidone(44), Olanzapine(6), Quetiapine(6), Chlorpromazine(6), Aripiprazole(5), Paliperidone(1), Fluoxetine(19), Fluvoxamine(5), Amitriptyline(4), Sertraline(4), Escitalopram(2), Paroxetine(1), Methylphenidate (Ritalin, Concerta) (14), Dexamphetamine/Lisdexamphetamine(9), Atomoxetine(5), Guanfacine(4), Lorazepam(2), Diazepam(1), Propranolol(2), Lithium(1).

***Some children had more than one allied health intervention; NDIS- Australian federal funded disability program, National Disability Insurance Scheme.

Service provision of the specialised intellectual disability health team

Figure 1 highlights the hybrid model of service provision adopted during the COVID-19 pandemic, which saw increased utilisation of telehealth consultations. Approximately 14% of patients did not receive any face-to-face assessments (Figure 2).

Figure 1.

Number of Medical Specialists’ interactions.

Figure 2.

Number of Multidisciplinary Health team interactions (Social Worker and Nurse Consultant; where both were present that was considered a single interaction).

The Specialised Intellectual Disability Health Team model of care serves as a single point of contact for medical specialist assessment and recommendations. Nevertheless, 48% of patients required two or more Specialised Intellectual Disability Health Team medical specialist interactions. A subset of complex patients (18.5%) required four or more interactions with a medical specialist. The mean duration of involvement with the Specialised Intellectual Disability Health Team service (from initial appointment to final allied health/medical interaction) was 227.98 days (CI 173.51-282.45). Table 4 presents statistically significant factors that influenced the duration of service involvement.

Table 4.

Significant factors influencing the duration of involvement in days with the Specialised Intellectual Disability Health Team.

Variable	Mean days (SD)*	p-value*	F-ratio*
Age group
<13 years (n = 66)	289.5 (389.1)	0.049	3.9
>13 years (n = 85)	180.2 (287.2)	0.049	3.9
Level of intellectual disability
Mild (n = 25)	57.1(129.4)	0.009	4.9
Moderate (n = 40)	207.6 (291.3)
Severe (n = 84)	291.2 (386)
Interpreter required
No (n = 111)	191.5 (314.2)	0.027	4.9
Yes (n = 40)	329.2 (385.4)	0.027	4.9

• *p-value, <0.05 is significant, Large standard deviations (SD) reflect skewed data and F-ratios more than 1.0 highlight large variability in the data.

In addition to the core Specialised Intellectual Disability Health Team, 80.1% of patients had additional multidisciplinary stakeholders present at one or more appointments. An Adult Rehabilitation Medicine Specialist was involved with 40.4% of our cohort and a Psychiatrist with 27.2%.

Recommendation practices of the Specialised Intellectual Disability Health Team

Medication changes

Following a multidisciplinary assessment conducted by the team changes to existing medication dosages were made for 28 (18.5%) children and young adults. Nearly half (72, 47.7%) had new medications recommended. The three most commonly initiated medications were Citalopram (12, 7.9%), Aripiprazole (11, 7.3%), and Clonidine (10, 6.6%). Medications that were ongoing at the time of referral were ceased in approximately one-tenth (21, 13.9%) of patients, with Risperidone (8, 5.3%) and Methylphenidate (6, 4%) being the most commonly discontinued. Additionally, a new medication was trialled and subsequently ceased in another 20 (13.2%) patients, most commonly Aripiprazole (5, 3.3%).

Comorbid diagnoses

To aid in diagnostic formulations, 37.1% of patients underwent standardised assessments. The most common assessment was a functional assessment, with a Vineland performed in 44 (29.1%) children and young adults. A new comorbid diagnosis was identified in 34.4% of patients. The three most frequent new diagnoses were Anxiety (19, 12.6%), Attention Deficit Hyperactivity Disorder (9, 6%), and Autism Spectrum Disorder (7, 4.6%). Medical investigations were conducted in approximately a quarter of patients, including blood tests in 40 (26.5%) and imaging investigations in 7 (4.6%) patients.

Non-medical recommendation practices

Table 5 highlights other non-medical recommendation practices of the Specialised Intellectual Disability Health Team. Support letters for schools and disability providers were sent to the majority (56.3%) of patients, and approximately three-quarters of patients were supported with requests for increased National Disability Insurance funding. Similarly, three-quarters of patients were recommended to commence new allied health interventions, particularly with a Psychologist (71, 47%) and an Occupational Therapist (63, 41.7%). One-tenth of patients received assistance with transitioning to supported accommodation, and 4% of patients were recommended for a higher level of school-based placement. Twenty-two (14.6%) were supported in commencing a post-school option. Referrals to other medical services were made for 64.2% of patients.

Table 5.

Actions and recommendations.

Recommendation type (n = 151)	Frequency (% of total)
Support letter sent
Yes	85 (56.3%)
No	66 (43.7%)
Increased national disability insurance Scheme funding support requested
Yes	105 (69.5%)
No	46 (30.5%)
New allied Health intervention requested^a
No	43 (28.5%)
Psychologist	71 (47%)
Occupational therapist	63 (41.7%)
Speech pathologist	42 (27.8%)
Dietitian	16 (10.6%)
New placement into supported accommodation
No	137 (90.7%)
Yes	14 (9.3%)
New placement into School for specific purposes
No	145 (96%)
Yes	6 (4%)
New placement into post-school day program
No	129 (85.4%)
Yes	22 (14.6%)
Referral to other services^a
None	54 (35.8%)
Dental assessment	43 (28.5%)
Psychiatrist	26 (17.2%)
Family planning	25 (16.6%)
Weight management service	8 (5.3%)
Genetics	7 (4.6%)
Vision assessment	6 (4%)

^aMore than one allied health intervention or referral was recommended for one patient.

Outcomes

Table 6 highlights the outcomes following the assessment and recommendations by the Specialised Intellectual Disability Health Team. The primary physician who followed up with these patients after involvement with the Specialised Intellectual Disability Health Team was a Paediatrician in 58.9% of cases, followed by General Practitioners in 31.1% of the cohort. A handover phone call regarding the management plan was made from the Specialised Intellectual Disability Health Team to the patient’s General Practitioner for 21.5% of patients upon completion of their involvement with the team.

Table 6.

Six-month follow-up outcomes after discharge from the service.

Primary follow-up on discharge from service
Paediatrician	89 (58.9%)
General practitioner	47 (31.1%)
Psychiatrist	14 (9.3%)
Adult Rehabilitation physician	1 (0.7%)
General Practitioner phone call handover performed (n = 149)
No	117 (78.5%)
Yes	32 (21.5%)
6-month follow-up completed (n = 149)
Yes	52 (34.9%)
No	97 (65.1%)
Recommendations followed (n = 117)
Yes	97 (82.9%)
No	20 (13.2%)
At 6-month follow-up: function improved, same, or worse (n = 117)
Improved	89 (76.1%)
Same	24 (20.5%)
Worse	4 (3.4%)

A 6-month follow-up phone call was completed for 97 (65.1%) patients. For those without a phone call follow-up, the clinical record was reviewed to analyse the patients’ progress 6-months post-assessment by the health team. Using a combination of methods, it was determined that recommendations from the Specialised Intellectual Disability Health Team were followed in the majority (82.9%) of patients. There was a positive qualitative improvement in presenting complaints and overall function observed in 89 (76.1%) patients following involvement with the Specialised Intellectual Disability Health Team.

A logistic regression analysis indicated that the single most significant factor influencing improvement in function at six months was whether the recommendations were followed through or not (p < 0.0001). Although the level of Intellectual Disability did not achieve statistical significance, there was a trend for this factor to negatively influence six months outcomes (see Table 7).

Table 7.

Logistic regression analysis for variables affecting the function of children and young adults at 6-month follow-up*.

Variable	Coefficient	Standard error	P-values
Recommendations followed through or not	4.44	1	<0.0001*
Level of intellectual disability	−2.26	1.33	0.08
Medication dosage changed or new medication added	−1.16	0.87	0.18
Duration of involvement with the specialised intellectual disability health team (days)	0.002	0.001	0.22
Age (years)	−0.03	0.1	0.73
Followed up by specialist versus general practitioner	0.27	0.8	0.73
Primary language spoken at home (English vs. language other than English)	−0.4	0.79	0.61
Reason for referral	0.28	0.81	0.73
Single parent household	−0.56	0.69	0.42

• * Hosmer-Lemeshow test showed excellent goodness of fit (classified 95% of true cases correctly), Nagelkerke R2 055 means this model explained 55% of the variance in outcomes.

Discussion

In this study, we report on the characteristics of the patients referred to the Specialised Intellectual Disability Health Team. It is crucial to assess these patient profiles to identify which children and young adults with Intellectual Disability might face challenges in accessing necessary support and services without the team’s multidisciplinary care model. These characteristics also provide an overview of the current management practices in patients who have not had input from a subspecialised Intellectual Disability team. We also elaborate on the recommendation practices of the team and highlight the factors that affected carer reported outcomes at six months.

Characteristics of cohort

At a population level, it is expected that 85% of people with Intellectual Disability will be in the mild range of delays in cognitive and adaptive functioning while 9% will be in the moderate range and 6% will have a severe to profound range of disability (Carnemolla et al., 2020). In contrast, over half of our study cohort fell within the severe to profound range, aligning with our team’s referral criteria, which focuses on supporting individuals with severe disabilities who face challenges in accessing medical, psychiatric, and disability services. The prevalence of comorbid diagnoses such as Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder (69.5% and 36.4%, respectively) in our cohort exceeds that reported in people with Intellectual Disability from older cohorts. In a 2010 study examining co-morbid chronic conditions in adolescents with Intellectual Disability in the Netherlands, the rates of Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder were noted to be 10.9% and 21.1%, respectively. The rates of Autism Spectrum Disorder could potentially be higher in our study due to the changes in the diagnostic criteria made in 2013 in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) that lead to a more streamlined diagnostic process of appreciating restrictive repetitive behaviours and qualitative social impairments as symptoms of this diagnosis in children with co-morbid Intellectual disability (Oeseburg et al., 2010).

Families served as primary caregivers for 90% of our cohort, often navigating additional psychosocial stressors, including a high proportion of single-parent households, which mirrors findings from studies conducted in other regions (Hatton et al., 2010). Moreover, many of our patients came from large families, with a significant proportion having relatives diagnosed with neurodevelopmental or psychiatric conditions up to the second degree, which is consistent with existing literature (Xie et al., 2019). Approximately half of our patient cohort hailed from culturally and linguistically diverse backgrounds, reflecting the diversity of our local population. Furthermore, a notable proportion had involvement with government agencies such as housing and child protection services, highlighting their heightened vulnerability to social disadvantages and abuse (Paquette et al., 2018).

While Australian health and disability systems aim for comprehensive integration of services for individuals with severe Intellectual Disability, our study revealed significant gaps in accessing essential supports. A substantial portion of our cohort did not access disability support services (50%), allied health interventions (25%), or have a National Disability Insurance Scheme funding plan (13.9%), which highlight a need for further allied health workforce development that can provide services for children and young adults with Intellectual Disability within the Australian healthcare landscape (Dowse et al., 2016).

The most common reason for referral to the Specialised Intellectual Disability Health Team was challenging behaviours such as aggression (61%), consistently reported as the most difficult aspect of carers’ experiences in caring for children with disabilities (Kiernan et al., 2019). These challenging behaviours also significantly impact disability support providers (e.g., allied health, schools, supported accommodation), despite their commitment to achieving positive outcomes (Ford, 2007). Providers and carers often require a strong and integrated approach to manage these behaviours in the home setting, with coordination across all settings and assistance from behavioural support practitioners. However, our study identified a significant gap in service delivery in this area, reflecting the broader issue of a lack of suitably experienced and qualified staff in Australia to provide these services (Kelly et al., 2024).

A substantial proportion of our cohort (almost two-thirds) were on psychotropic medications upon referral, primarily antipsychotics (45%) and clonidine (23%), that were often prescribed for behavioural disturbances. There is evidence that a large proportion of adolescents with Intellectual Disability are prescribed psychotropic medications that are deemed inappropriate or prescribed in the absence of a diagnosed mental illness (Song et al., 2020). This is often due to barriers in accessing behavioural and psychological interventions in a sustained manner (Kelly et al., 2024). However, in our study cohort, the proportion of children prescribed antipsychotics is similar to more acceptable rates reported in other studies (Deb et al., 2023). Despite limited evidence, a trial of clonidine is often considered an appropriate treatment option for behavioural disturbance in children with Autism and Intellectual Disability (Banas and Sawchuk, 2020).

Most Paediatricians are comfortable prescribing first-line psychotropic medications (Rao et al., 2024). However, if these medications fail, they often seek advice from specialised teams or Psychiatrist colleagues for further medication management.

Management practices of the Specialised Intellectual Disability Health Team

Specialist multidisciplinary teams, such as ours, have demonstrated effectiveness in enhancing subspecialty care and clinical outcomes. They provide specialised medical opinions and complex management solutions beyond the scope of General Paediatricians, advocating for patients and facilitating access to necessary services. Our team’s integration of senior Social Workers and Clinical Nurse Consultants enabled personalised care coordination, addressing service gaps (e.g. school placement, supported accommodation, transition/ referral to other medical services following initial appointment) and advocating directly with providers to improve outcomes for our patients. This was demonstrated by the high usage of services by one-third of our study cohort requiring seven or more Social Worker/Nurse interactions.

A key component of the Specialised Intellectual Disability Health Team was the involvement of the service providers from other disability support services such as Speech Pathologists, Occupational Therapists, Behaviour Support Practitioners and school educators as much as possible in the team meetings, thus facilitating communication between the medical team and those who would be providing the support and therapies. About one-quarter of clinics were attended by a school representative, and 22% by the patient’s Support Worker. The Specialised Intellectual Disability Health Team also consisted of other medical professionals who provided further specialty input including psychotropic medications and transition to adult disability services (e.g. a Rehabilitation Medicine Specialist was present in 40% of clinics and a Psychiatrist in 27%). Furthermore, these medical professionals facilitated the transition of care to adult services within these specialties. This is particularly important as parents often report a deep sense of loss when transitioning from paediatric health providers and a loneliness in driving the process of transition (Brown et al., 2020).

The other benefits of a specialist team model were evidenced in the high amount of additional comorbid diagnoses made in the referred cohort. It is reported in the literature that comorbid diagnoses are often under-reported in children with Intellectual Disability due to the specific challenges of assessments inherent in those children (Young et al., 2020). Several challenges specific to the field of Intellectual Disability can make the diagnosis of comorbid psychiatric disorders difficult. Individuals with Intellectual Disability can experience communication difficulties with resulting inability to elaborate their psychological experiences resulting in an underreporting of psychiatric symptoms. There is high possibility of diagnostic overshadowing because of a tendency to attribute any behavioural/psychological disturbance to a person’s Intellectual Disability. Although individuals with Intellectual Disability often have the same form of psychopathology (e.g., auditory hallucinations) as those with intelligence in the normal range, the content and presentation of a comorbid psychiatric disorder can be atypical. Clinicians must be aware of this and place greater emphasis on observing the individual and on obtaining collateral history from family and care staff to avoid missing a diagnosis (Kendall and Owen, 2015). In our study, new psychiatric diagnoses of Anxiety (12.6%) and Depression (3.3%) enumerated an improved understanding of the underlying psychological experiences of the referred cohort, opening additional treatment avenues.

Notably, our team frequently adjusted existing medication dosages or initiated new medications to address behavioural challenges, with 90 children and young adults with Intellectual Disability (60%) having some medication changes done to their existing regimes. Rotation of anti-psychotic medications (most commonly risperidone to aripiprazole) to aid with aggression was effective, with 68.8% of patients started on aripiprazole finding benefit and continuing the medication. Following comorbid diagnoses, medications were commenced to treat conditions such as Anxiety, Depression, and Attention Deficit Hyperactivity Disorder in 35 (23%) of patients.

Outcomes

Recommendations were followed by the vast majority (82.9%) of patients, displaying the benefits of extensive social worker/nursing support provided by the Specialised Intellectual Disability Health Team. Three-quarters of carers reported an ongoing improvement in function for the primary concern they presented with to the team at 6-month follow-up. This should be interpreted with caution as standardised measures of pre- and post-clinic involvements in challenging behaviours and adaptive functioning were not used, and this was based on the qualitative improvements perceived by the carers. Our study however demonstrated that adherence to recommendations from the Specialised Intellectual Disability Heath Team significantly correlated with improved patient function at six months. This underscores the critical role of family adherence and compliance with treatment plans, as highlighted in systematic reviews of medication management in individuals with Intellectual Disability (Sheerin et al., 2021).

Although our team model primarily involves a single encounter for care formulation and handoff to primary treating teams, a significant proportion (almost 50%) of patients required multiple medical interactions or were re-referred to our service. This highlights ongoing engagement needs for complex cases and factors influencing prolonged service involvement (Zhou, 2016). As noted in our study, severity of Intellectual Disability, language barriers and younger children have more challenges in accessing services and need prolonged supports (Emerson et al., 2010; Koritsas and Iacono, 2015; Perera, 2019).

Paediatricians remained the most common providers of ongoing care following involvement with the Specialised Intellectual Disability Health Team. Importantly, General Practitioners accounted for almost one-third and Psychiatrists for one-tenth of follow-ups. An area for improvement identified by the Specialised Intellectual Disability Health Team is in the handover of phone calls to General Practitioners, which was performed in only one-fifth of patients. This process could be utilised more effectively to empower primary healthcare providers and ensure adequate handover and support.

Limitations and implications for future research

This study is inherently tied to the geographic area of its referral cohort and may not be representative of the general population of people with Intellectual Disability in Australia, as our cohort represents the more severe end of Intellectual Disability. The South Western Sydney area exhibits numerous other psychosocial determinants that could affect general access to services, including a higher proportion of people born overseas, a greater prevalence of refugee populations, and a larger number of individuals who speak languages other than English compared to the rest of the state. There are specific refugee health screening clinics in the district that facilitate access to pathways for trauma-informed services for families. It is therefore vital that the ongoing incorporation of cultural safety and trauma-informed care becomes a standard of care for health professionals working in teams that deliver care to culturally diverse people with additional social vulnerabilities along with Intellectual Disabilities. This aspect should also be researched further for enhancing quality of care.

Future studies should focus on long-term outcomes following team input beyond the 6-month follow-up period. Additionally, conducting a sub-analysis of a cohort of children and young adults who required re-referral to the service would be beneficial. The qualitative assessment of improved function at six months, based on parental reports and experience, could also be enhanced in future studies by incorporating quantitative measurable factors.

Exploring the profile and management practices of the team for adults with Intellectual Disability and comparing them with the findings of the current study would provide insights into the differences and longitudinal trajectory of outcomes for children with Intellectual Disability.

Conclusion

This paper represents the first evaluation in Australia of the profile, prior management practices, recommendations, and outcomes of a multidisciplinary Intellectual Disability health team. It provides significant insights into the characteristics of this patient population, emphasising their complexity and high overall needs, particularly in the diverse and vulnerable geographical region of South Western Sydney. The study offers a crucial snapshot of current management practices for children and young adults with Intellectual Disability both before and after involvement with the Specialised Intellectual Disability Health Team, highlighting substantial gaps in access to essential disability services and interventions.

Challenging behaviour remains a significant comorbid issue among children and young people, often necessitating changes in medications for a large proportion of patients and underscoring the need for effective advocacy in behaviour support. The study underscores the importance of supporting families in implementing recommendations to achieve functional improvement at six months post-assessment. Additionally, it identifies that a significant portion of the referred cohort requires multiple healthcare encounters rather than a one-off assessment.

The findings illustrate the effectiveness of the Specialised Intellectual Disability Health Team model of care for managing complex cohorts of children and young adults with Intellectual Disability. However, there is a clear need for longitudinal studies to track these individuals as they transition into adult health systems and better standardised measures of pre- and post-clinic improvement measures.

Supplemental Material

Supplemental Material - Evaluation of the patient profile and health interventions offered by a multidisciplinary Intellectual Disability health team

Supplemental Material for Evaluation of the patient profile and health interventions offered by a multidisciplinary Intellectual Disability health team by Dominic Bull, Pankaj Garg, Teresa Lai, Natasha Reid, Bridget Farrell, Catherine O’Hea, and Shanti Raman in Journal of Intellectual Disabilities

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Ethical statement

ORCID iD

Pankaj Garg

Supplemental Material

Supplemental material for this article is available online.

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