Reasonable adjustments to the application of the comprehensive care standard within an Australian mainstream internal medicine outpatient clinic attended by adults with Down syndrome

ABSTRACT

Background:

The Australian Commission on Safety and Quality in Health Care recommends the development of reasonable adjustments to Comprehensive Care Standard to better suit the needs of people with intellectual disability.

Method:

An audit of adults with Down syndrome attending a mainstream internal medicine outpatient clinic was undertaken to describe their biopsychosocial profile, identify previously developed reasonable adjustments to clinical service and to consider their alignment with comprehensive care.

Results:

Of 54 adults, 31 (57%) male, average age 36 years (17.5–68 years), there were multiple syndromal and non-syndromal co-morbidities, 10 deaths (9 expected), from dementia. All had some degree of intellectual disability with all requiring disability supports to assist in their healthcare and an active health-disability interface in most cases.

Conclusions:

Reasonable adjustments to usual clinical content, process, knowledge, and organisation were identified, which appeared to facilitate application of comprehensive care. These were predominantly influenced by intellectual disability, disability supports, and the health-disability interface rather than the disease profile.

KEYWORDS:

• Down syndrome
• comprehensive care
• reasonable adjustments

The eight National Safety and Quality Health Service Standards (NSQHS), developed by the Australian Commission on Safety and Quality in Health Care ([ACSQHC], the Commission), aim to protect the public from harm, to improve the quality of health service provision and provide a mechanism for quality assurance of healthcare delivery (ACSQHC, 2021a).

The intention of the fifth NSQHS Standard, the Comprehensive Care Standard, is to ensure that patients receive coordinated delivery of the total health care that is required by them, that is aligned with their expressed goals of care and healthcare needs, that is clinically appropriate, and that considers the effect of their health issues on their life and wellbeing (ACSQHC, 2021). This Standard comprises four main Criteria with 19 Items, and 38 associated Actions relevant for health organisations, managers, and clinicians (ACSQHC, 2022). Its clinical implementation is further supported by six essential elements of comprehensive care: (1) clinical assessment and diagnosis, (2) identification of goals of care, (3) risk screening and assessment, (4) development of a single comprehensive care plan, (5) delivery of comprehensive care, and (6) review and improvement of comprehensive care delivery (ACSQHC, 2018) (Table 1).

Table 1. The six elements of comprehensive care (left sided column), and audit data of the identified reasonable adjustments to usual clinical process, content, knowledge, and clinic organisation with suggested relevance to particular comprehensive care elements (right-sided column).

Six elements of comprehensive care to implement the Comprehensive Care Standard (ACSQHC, 2018)		Identified reasonable adjustments to usual clinical practice with (corresponding relevant comprehensive care element(s))
1	Clinical assessment and diagnosis (ACSQHC, 2020a) Communication appropriate Person centred Tailored to recipient Patient symptoms and expression of these Sharing understanding of provisional, differential, and final diagnoses Awareness of changing information and requirement of review of diagnosis.	To usual clinical process Using appropriate communication and engagement skills with patients with intellectual disability and their supports (1–6) Being alert to atypical presentations for physical health problems (1, 3) Deferring physical examination until second meeting to reduce patient stress (1) Opportunistic testing under general anaesthesia with cooperation with local public hospital for selected patients (1) Working with disability supports required to facilitate the access and participation of patients with Down syndrome in their healthcare at outpatients and inpatients (3, 4) Checking, clarifying roles and abilities of disability supports to assist with health management (4, 5); addressing gaps in skills (4, 5) Establishing networks with palliative and dementia services around patients with Down syndrome and dementia, and their disability supports; share documentation with other health and disability networks (4) Taking into account lowered health literacy of patients and disability support (4) Problem solving around barriers in healthcare management (1) To usual clinical content Nature of the intellectual disability, sensory and motor disabilities, communication, its impact on daily life and function (1) What daily life is like, what life has been like growing up (4) Coverage of Down syndrome syndromal and non-syndromal health issues; healthy living; multiple problems (1) Nature of health literacy of patient with Down syndrome and their disability supports’ (1, 4, 5) Pre-planning the disability-NDIS-health interface as regards disability supports for any inpatient care (1, 3, 4, 5) Ageing and the future, family (1, 4) Name of substitute/supported decision maker (5) End of life care for patients with Down syndrome with late- stage dementia (2) Dementia screening for adults with Down syndrome aged ≥50 years (1, 2, 3) Baseline younger age cognitive assessment and serial testing To usual clinical knowledge Down syndrome syndromal and need to explore beyond (3, 4, 6) High rates of hospitalisation and risks anticipation (1–6) Possible lower health literacy of patients with Down syndrome and their disability supports Disability sectoral training and NDIS regulations with respect to disability supports for health, medication management, codes of conduct, quality indicators (5, 6) NDIS principles of interface with mainstream (4, 5) Disability values (1,5) To usual clinic organisation Initially longer and more frequent appointments for baseline 2 × 1 h, 2 × ½ hour, then half hourly for follow ups or annual reviews (1–6) Building in extra time for appointment to problem solve issues with disability sector, refinement of person-centred approach (1, 4, 5, 6) Expectation of patient attendance with disability supports (4, 5, 6) Key contacts-patient, family, disability support workers, substitute decision maker, updates (4, 6) Outpatient clinic administration staff contact, organisation, reminders (5) Documentation recipients include patient, disability supports, substitute decision maker (4) Parking; map; more chairs for the clinic room
2	Identify goals of care (ACSQHC, 2019a) Clinical goals Personal goals Short, medium, and long term goals Preferences for end of life or treatment limiting orders.
3	Risk screening and assessment (ACSQHC, 2019b) Identify risk and planned mitigation strategies.
4	Develop a single comprehensive care plan (ACSQHC, 2019c) Personal identifiers and preferences People involved in care Activities of daily living Take into account health literacy Include patients, family, carers other support people Identify patient’s personal and clinical goals Identify risks Contemporary and accurate Succinct and need to include critical information Recipients of documented plan Encompasses clinical assessment, planned interventions, monitoring plans.
5	Deliver comprehensive care (ACSQHC, 2020b) Dynamic in response to patient health Person centred involving patient, family, and other support people Review and revisiting avenues to prompt review of the delivery of comprehensive care.
6	Review and improve comprehensive care delivery (ACSQHC, 2019d) Planned interventions Monitoring plans.

The Commission acknowledges that particular populations, singling out the population with intellectual disability among them, face barriers in successful application of the Standards (ACSQHC, 2021b). To this end, it has recently commenced work to develop “reasonable adjustments” to its mainstream resources to facilitate the application of the Standards specifically for people with intellectual disability. When applied within health settings, the concept of reasonable adjustments, has been interpreted to be small refinements to usual clinical processes and organisation intended to reduce barriers and improve access to and participation of people with disabilities in healthcare (Heslop et al., 2019). Furthermore, such reasonable adjustments are intended to be shaped by the nature of the disabilities of populations and individuals and their views (Commonwealth of Australia, 2022), by their systems of family and disability supports (ACSQHC, 2021; National Disability Insurance Scheme [NDIS] Quality and Safeguards Commission, 2022), and by an operational interface between health and disability at a sectoral level (Australian Commonwealth, 2015).

This paper explores the application of the six elements of comprehensive healthcare delivery for adult patients with intellectual disability due to Down syndrome attending a mainstream physician-led hospital outpatient setting, and the range of and influences on reasonable adjustments helpful in achieving these. Provision of comprehensive healthcare delivery as part of a biopsychosocial framework is a core component of adult physician training (Talley & O’Connor, 2021). It inherently involves

teams of health professionals working together and communicating effectively to plan, manage and coordinate care with the patient [requiring] health service organisations to have systems and processes in place to support this, and to foster a collaborative and person-centred culture. (ACSQHC, 2022a)

Yet physicians-in-training and qualified physicians have relatively little training in the skills required in adapting their abilities to provide comprehensive care to their patients with intellectual disability, and in the logistical implications for the organisation of clinical service (Burge et al., 2008; Trollor et al., 2016; Wilkinson et al., 2012). Generic intellectual disability or Down syndrome checklists of health problems (e.g., CHAP, Down syndrome checklist) are promoted as useful tools in outpatient healthcare, but they do not incorporate any biopsychosocial aspects of health, a sense of person-centredness, or any of the six elements of comprehensive care. Though potentially useful as reminder lists, their completion cannot be considered as evidence of a level of comprehensive care provision that meets the Comprehensive Care Standard, or fulfils any of the six criteria mentioned above. These sets of potential deficiencies more than likely contribute to the relatively high rate of preventable morbidity and mortality observed over years among the general population with intellectual disability, including those with Down syndrome (Cooper et al., 2020), and higher hospitalisation rates (Iacono et al., 2014).

Provision of the six elements of comprehensive care for any patient, among other things, requires a degree of knowing that what life is like for them. For people with Down syndrome, living with intellectual disability entails an inherent complexity of multiple syndromal and non-syndromal medical problems per person (Cooper et al., 2015; Wallace & Dalton, 2006), the experience of multiple negative social determinants of health (Emerson et al., 2011), the prospect of multiple cognitive, physical and attitudinal barriers to their access and participation within health settings (Iacono et al., 2014; Mencap, 2006), and a recognised higher risk for preventable premature deaths and adverse inpatient events (Heslop et al., 2014; NSW Ombudsman, 2018; Trollor et al., 2017). Further, by its nature, intellectual disability of Down syndrome, although not a medical illness, means that the person may have limitations in independently accessing and participating in their medical assessment, telling their story, describing symptoms and responding, undergoing tests, understanding and self-managing healthcare (American Psychiatric Association, 2013). Such limitations in core skills highlight a frequent requirement for disability supports (family and disability support workers) to assist people with Down syndrome access and participate in their health care, and for regular collaboration between health and disability professionals and sectors. All of these factors fundamentally impact upon what person-centred care means and influence how comprehensive care is undertaken for people with Down syndrome. Moreover, these factors highlight the direction and focus of reasonable adjustments to usual practice for adults with Down syndrome.

In the absence of formalised reasonable adjustments to usual health care for adults with intellectual disability, over years, within the author’s clinical practice, a number reasonable adjustments were developed by them and incorporated into their mainstream outpatient clinic when patients with Down syndrome attended. They had noticed that it was not easily possible to fulfil the requirements of provision of comprehensive care for their patients with intellectual disability by their usual clinical organisation, knowledge, content, and process. For example, more time was needed to cover everything, information about the disability was required in order to communicate and find out what person-centred care was for them. The subsequently formulated reasonable adjustments derived variously from a number of resources including learned communication skills with people with intellectual disability (e.g., Boardman et al., 2014; Council for Intellectual Disability, 2022a, 2022b), disability-based values (e.g., United Nations, 2006), formal and informal disability sector education (e.g., NDIS, 2022), lived experience of people with Down syndrome and their families, Down syndrome health literature (e.g., Down syndrome Australia, 2022), health–disability interface reports (e.g., Australian Human Rights Commission, 2022; MENCAP, 2006; Wallace, 2018), state and Commonwealth disability-related legislation and regulation (e.g., NDIS, NDIS Quality, and Safeguards Commission), and mainstream physician training and reflective skills (e.g., Talley & O’Connor, 2021). Any measure of the suitability of these a posteriori reasonable adjustments in facilitating provision of the elements of comprehensive care to adult patients with Down syndrome had not been undertaken.

With this background, the present paper describes an audit of the patients with Down syndrome attending the author’s outpatient clinical services, which was aimed at (1) describing the biopsychosocial profile of referred patients, (2) listing the formulated and implemented reasonable adjustments to the clinician’s usual outpatient clinics for this group of patients, and (3) exploring the influences on these reasonable adjustments and their alignment with the six elements of comprehensive healthcare delivery to meet the Comprehensive Care Standard. Though a single setting study, it is suggested that the practical recommendations could complement the Commission work and be useful for mainstream physicians in their outpatient care of adult patients with intellectual disability, in this case due to Down syndrome, the most common known cause of intellectual disability in Australia (Australian Institute of Health and Welfare, 2004).

Setting

The study setting was a mainstream, solo, private practice, internal medicine outpatient clinical service (the “study outpatient clinic”) provided by a specialist physician in internal medicine, the author (the “study physician”), on the grounds of a medium-sized private hospital in Hobart, a city of about 250,000 people, in the state of Tasmania, Australia. The city is additionally serviced by a larger public hospital, services of which are available for all citizens, and including all patients attending the study outpatient clinic. The study physician was self-employed within the private hospital with usual daily responsibility for adult inpatients with acute and chronic health problems and outpatient clinic duties for referred adults regardless of disability. They were up to date with all their required professional credentialling to practice. It was estimated that there were 250–300 people with Down syndrome across the life span living in Tasmania (Down Syndrome Australia, 2022), a similar proportion of the population as within other states.

Assessment of any individual adult patient by the study physician required a referral from the patient’s general practitioner (GP) or other specialist. The assessment usually entailed a series of outpatient appointments during which a comprehensive healthcare assessment would be undertaken incorporating all six elements underpinning the Comprehensive Care Standard as described earlier (ACSQHC, 2018). After completion of the appointments, reports were completed and distributed to the referring doctor and relevant others. As long as patients were agreeable, they would normally be followed up at a future appointment or at the discretion of their GP. Detail of the clinical service is described in Appendix 1. Outpatient clinics would usually be informed by values such as person-centredness (ACSQHC, 2022), knowledge of the requirement for compliance with both the NSQHS standards (ACSQHC, 2021b), generic physician clinical processes (Talley & O’Connor, 2021), and professional codes of conduct (Australian Medical Council, 2009).

The study physician’s scope of clinical outpatient service at the current location for a duration of 10 years was available for any adult (aged 18 years or older) patients with and without intellectual disability or Down syndrome referred to them for specialist internal medicine review by their general practitioner or other medical or surgical specialist. Over several decades elsewhere, the study physician had the opportunity of seeing many patients with intellectual disability, now comprising nearly one half of their total outpatient practice. The study clinic was supported by two administrative staff who provided services such as bookings, typing and distribution of letters, and billings. A number of other mainstream independent consultant practices operated out of the same physical consultation rooms using the same administration staff as the study physician and they may infrequently have also been involved in their sub-specialty care of the study patients.

Referred patients with Down syndrome were offered a range of appointment times with the study physician: any of their existing outpatient clinic sessions for the general population (twice weekly), for people only with Down syndrome (once monthly), or for people with intellectual disability due to other causes (once weekly). Local hospital, Tasmanian State and Commonwealth disability and health legislation, regulations, and standards were applicable. Patient out-of-pocket charges may have been applicable through the Australian health system rebate scheme for outpatients, Medicare, was available for full or partial patient reimbursement as long as referral regulations were adhered to.

Methods

This was a retrospective, observational, audit by the study physician who was self-reporting elements and analysis of their own clinical experience with all of their patients with Down syndrome.

The charts of all adult patients with Down syndrome who had been both referred to and seen by the study physician over a 10-year period were included in the audit. The diagnosis of Down syndrome was clinically made based on phenotypic features, history, and historical genetic records. The biopsychosocial framework used in clinical evaluation was consistent with that used by generic physicians in internal medicine (Talley & O’Connor, 2021). All data were tabulated in a de-identified manner including selected results of biopsychosocial reviews of each patient, along with numbers of referrals initiated by the study physician to other sub-specialists, rates of hospitalisation, deaths, clinic logistics such as appointment duration and frequency, information about the intellectual disability, and disability support whether that be family, friends or disability support workers (“disability supports”) required by the adult patient with Down syndrome to attend the outpatient clinic.

Data collection also involved identifying and collating the reasonable adjustments. Reasonable adjustments, as defined earlier to be as refinements to usual clinical processes and organisation intended to reduce barriers and improve access to and participation in healthcare (Heslop et al., 2019), were identified as being present if they were generally present in clinical outpatient services for patients with Down syndrome and not generally applied for the study physician’s outpatient clinics for patients without Down syndrome or intellectual disability. For ease of practical analysis, the reasonable adjustments were categorised by their relevance to usual clinical content, process, knowledge, or organisation involved in the delivery of comprehensive care.

The reasonable adjustments were then aligned as “best fit” relevance (or of no relevance) in facilitating the application of one or more of the six elements of comprehensive care. In making such assessment, the Commission’s published documents on the nature and composition of each of the six elements underpinning the Comprehensive Care Standard were used as reference points: (1) clinical assessment and diagnosis (ACSQHC, 2020a), (2) identify goals of care (ACSQHC, 2019a), (3) risk screening and assessment (ACSQHC, 2019b), (4) develop a single comprehensive care plan (ACSQHC, 2019c), (5) deliver comprehensive care (ACSQHC, 2020b), (6) review and improve comprehensive care delivery (ACSQHC, 2019d).

Prior to patients’ first appointments, they or their substitute decision maker had signed a consent for the collection of their de-identified material for potential auditing purposes. The study was approved by the University of Tasmania Research Ethics Unit (23 January 2023).

Results

Initially, 55 adults with Down syndrome were referred and reviewed over the 10 years, taking up 497 outpatient visits. One referred patient was found to have been historically mistakenly diagnosed with Down syndrome (confirmed by chromosomal study) and was not included in the audit results, leaving a total of 54, patients with Down syndrome. All underwent the clinical process as described in Appendix 1.

The audit data are divided into those relating to demographics, referral pattern, range of health conditions (Table 2a), and those relating to the intellectual disability, disability supports, and health–disability interface (Table 2b). Then Table 1 lists the six elements of comprehensive care in one column and, in the adjacent column depicts the audit data of the identified reasonable adjustments with their proposed alignment with one or more of the six elements.

Table 2a. Audit data from cohort of all adult patients with Down syndrome attending a mainstream internal medicine outpatient clinic for comprehensive health care over a 10-year period: demographic, referral patterns, disease profile.

Demographic profile
Item		Total = 54 Number, n (%)
Gender
	Male	31 (57%)
	Female	23 (43%)
	Average age, range	36 years, 17–68 years
Number of deaths		10 (17%)
Average age at death, range		51.2 years, 30–61 years
Referral patterns
Referral source
	GP	50 (93%)
	Paediatrician/other specialist	4 (7%)
Reason for referral
	Transition from paediatrics	8 (15%)
	Single focus	10 (5%)
	General review	32 (59%)
	Behaviour	4 (7%)
Physical health profile
Health system		Total = 54 Number, n (%)	Range of conditions
	Sensory	38 (70%)	Vision and hearing impairments, for example, cataracts.
	Health promotion needs	31 (57%)	Physical activity, healthy weight, immunisations, dental visits.
	Musculoskeletal	30 (56%)	Degenerative disease, spinal stenosis, gout, hip dysplasia, falls, osteoporosis, pain, juvenile rheumatoid, shortened limbs, joint surgery.
	Gastrointestinal	30 (56%)	Celiac, H. pylori, reflux, choking, imperforate anus, Hirschsprung, constipation, duodenal atresia, undiagnosed abdominal pain.
	Cardiac	29 (54%)	Congenital heart disease, valvular disease, postural hypotension, bradyarrhythmia, syncope, presyncope, pacemaker.
	Respiratory	28 (52%)	Obstructive sleep apnoea, recurrent infections, cilial dysfunction, pulmonary embolus, congenital lung anomaly, bronchiectasis, no smokers.
	Central nervous system	22 (41%)	Dementia, epilepsy, stroke.
	Thyroid	18 (33%)	Hypothyroidism.
	Obesity	16 (30%)	BMI > 30.
	Skin	15 (28%)	Folliculitis, psoriasis, seborrhoeic dermatitis, eczema.
	Mental illness	14 (26%)	Obsessive compulsive disorder, anxiety, depression, autism.
	Male and female health	11 (20%)	Ambiguous genitalia, hypogonadism.
	Behaviours of concern	11 (20%)	Exploration if manifestation of physical health concern.
	Polypharmacy (five or more medications)	10 (19%)
	Haematology	10 (19%)	Factor V Leiden, polycythaemia, leucopoenia, thalassaemia, immunocompromise.
	Renal/urology	9 (17%)	Benign tumour, microscopic haematuria, meatal stenosis, phimosis.
	Autoimmune	3 (5%)	Lupus, juvenile rheumatoid.
	Diabetes	1 (2%)	Type 1 diabetes mellitus (insulin pump).
	Palliative care services	8 (15%)	Dementia, end-stage congenital heart disease context.
	Hospitalisation event during years of attending clinic	30 (56%)
	Deaths	10 (19%)	Eight end stage dementia, one end stage congenital heart disease, one aspiration.

Table 2b. Audit data from cohort of all adult patients with Down syndrome attending a mainstream internal medicine outpatient clinic for comprehensive health care over a 10-year period: intellectual disability, disability supports, disability sector.

Intellectual disability, disability supports profile
Item		Total = 54 Number, n (%)
Disability support pension		54 (100%)
NDIS* participant		53 (98%)
Accommodation
	Family	33 (61%)
	Supported accommodation	21 (39%)
Assessment of intellectual disability
	Without formal scale	54 (100%)
	With additional formal scale	16 (30%)
Discussion on substitute decision maker (including supported decision making now)
	Health	54 (100%)
	Finances	27 (50%)
Impact of intellectual disability on outpatient healthcare access and participation
	Able to independently organise appointment	0 (%)
	Able to independently provide history without any disability support	0 (0%)
	Some difficulty with physical examination	15 (28%)**
	Some difficulty with venesection and basic imaging	13 (24%)***
	Average time required for all appointments to cover baseline comprehensive care after initial referral	3 h: 2 × 1 h, 2 × 30 min****
	Copy of completed comprehensive care assessment letter to referring doctor, to patient’s residence, to guardian, to other specialist (if relevant)	54 (100%)
	Easy-read version of letter to patient	0 (0%)
	Clinician requirement for reasonable adjustments to usual knowledge, content, process, organisation	54 (100%)
Disability supports for health
	Provision generally by family only	31 (57%)
	Provision generally by disability support workers only	5 (9%)
	Provision generally by both family and disability support workers	18 (33%)
	Requirement for some level of disability supports for healthcare	54 (100%)
	Discussion on disability supports planning in the event of ever needing hospitalisation	54 (100%)
	Disability-health interface
Relevance of disability- and NDIS*- sectoral regulations and standards*****
	Medications	54 (100%)
	Disability support for inpatient care (involving family and funded disability support workers)	23 (43%) current and 54 (100%) future planning
	Management of acute and chronic health issues at home, and during the day	54 (100%)
	Disability support for healthy living	54 (100%)

*National Disability Insurance Scheme.

**Three of those not possible even after several appointments.

***Five of those would require a general anaesthetic for combined tests done at opportunistic time (e.g., at dental review).

****“Baseline appointments” refers to set of four appointments required after initial referral; as required subsequent follow up appointments 30 min, and annual reviews 30–60 min duration (see Appendix 1).

*****Examples in Appendix 2.

Demographics, referral pattern, health issues

As shown in Table 2a, the average age of the cohort at their initial appointment was 36 years (range 17.5–68 years), with 32 (57%) males. None were married or had children.

Referrals, which derived mainly from General Practitioners (GPs), entailed a request for comprehensive healthcare assessment. Notably, changes of behaviour, rather than a specific physical health symptom, comprised a primary reason for referral in a proportion of patients (n = 4) or a described symptom during history (n = 10) for physician exploration of whether or not the change in behaviour represented an underlying physical health condition (25% of the patient cohort).

All patients received their primary healthcare from their GP. Sub-specialists in cardiology, palliative care, and respiratory systems were the most frequently required sub-specialists, usually in the public sector (data not shown).

More than half of the patient cohort experienced inpatient hospitalisation during the 10-year period for acute (e.g., sepsis from appendicitis) and planned reasons (e.g., hip replacement). Most hospital admissions occurred in a public hospital not formally affiliated with the outpatient clinic.

There were multiple body systems involved in pathology of which approximately half were syndromal and half thought to be non-syndromal conditions (Table 2a). More than half of patients had multiple active health problems associated with their sensory, musculoskeletal, gastrointestinal, cardiac, or respiratory systems needing to be addressed. A majority also had active health promotion needs. Over the 10 years, there were 10 deaths (7 male), 9 of which were expected from terminal illness and one apparently due to sepsis from aspiration in the setting of chronic immunosuppression. The commonest cause of death was end-stage dementia (n = 8). None of the physical health conditions could be considered as rare or outside the usual scope of care by a mainstream specialist physician in internal medicine.

Intellectual disability, disability supports, health–disability interface

As shown in Table 2b, all 54 patients had intellectual disability, all had some level of daily disability support provision at home ranging from 2 to 24 h per day, all but one participated in the National Disability Insurance Scheme (NDIS) (one too old for eligibility). Nearly 40% of the patients lived in supported accommodation, the rest with family, sometimes with very elderly parents. During the 10 years, some patients transitioned from the family to supported independent living situations or moved house (data not shown). All received a disability support pension. During the day, attendance at day service, supported employment, volunteering, activities with family were among the most common activities (data not shown) always requiring degrees of disability supports. All underwent a basic evaluation of the impact of their intellectual, sensory, and any motor disabilities on daily living activities, communication, independence, ability to participate in health care and healthy living, receptive and expressive communication, numeracy, and literacy skills by the study physician. NDIS assessments and plans, neuropsychological reports were scanned if available for the purposes of understanding the patient’s intellectual disability, daily disability support provision and needs. All had daily requirements for some level of disability supports for daily living and access and participation in the mainstream community.

Approximately a quarter of the patients initially resisted adequate physical examination and basic investigations, but most with the assistance of disability supports and after the first visit with the physician were able to have at least a limited physical examination. For a minority of this sub-group (3 of 15), opportunistic examinations and tests were individually arranged by the study physician to be undertaken while they were having a general anaesthetic for another reason such as dental care (performed at the local public hospital).

The presence of intellectual disability due to Down syndrome impacted upon applicability of certain screening tests. For example, assessment for dementia screening tests used among the general population was not suitable. Alternative validated and reliable tests for dementia specifically for people with Down syndrome, such as The Adaptive Behaviour Dementia Questionnaire (ABDQ) were sourced (Prasher et al., 2004). For baseline skills, patients and their families or support workers were offered an Adaptive Behaviour Scale Questionnaire (Nihira et al., 1993) to fill in for the patient and send back for baseline cognitive assessment (n = 16), deemed of relevance with the known prospect of early onset dementia. Mammograms screening was not required.

All patients engaged at some level while undergoing their comprehensive care processes, from describing how their insulin pump worked to walking around the clinic room with occasional eye contact. None was able to organise attending the clinic completely on their own or participate without the presence of disability supports to assist in obtaining adequate biopsychosocial details including about their disability, medical symptoms and history, medications, allergies, family history, tests, and understanding the diagnoses, enacting management plans, and providing response, complete contact details. None was anticipated to be able to attend to any acute physical health event requiring an inpatient hospitalisation or outpatient visit completely independently. When disability supports were present and some level of engagement with the patient was achieved, it was very rare for a patient to walk out of the clinic, even for an appointment of 60 min.

Every patient always attended with disability supports often with the staff members changing from appointment to appointment and having known their client for weeks to years. Disability supports, funded by patients’ NDIS plans, were present variably for patients at their home or day service, for example. Chart records showed that disability supports often demonstrated valuable communication techniques with their family members/clients with Down syndrome during the appointments. It was evident that when funded disability support workers were involved in the provision of disability support for health care, additional NDIS-related and disability sectoral regulations and standards were required to be met by them.

Prior to clinic attendance, no patient had a formal plan covering the role of disability supports required to enable their access and participation in health care in any setting-healthy living at home, visiting GPs, specialists or inpatients, and no patient or family had yet considered this in their NDIS planning. All 54 patients were offered such an individual evaluation as part of routine care.

Discussion on regulatory aspects of substitute decision making (which in Tasmania implicitly incorporates supported decision making) for matters of health, NDIS, centrelink, Medicare, finances were discussed for and with patients and their family and other disability supports. Discussions about the future planning and ageing parents were undertaken with patients with Down syndrome and their families routinely. Intermittent requests to the study physician from disability supports for documentation regarding NDIS letters of support, review of case management plans by GPs, health care professional reports for guardianship and administration applications, disability support pension application, emails for advice (data not shown) were made and attended to.

Reasonable adjustments

Reasonable adjustments to usual practice were identified and categorised as spanning aspects of the study physician’s usual clinical processes, content and knowledge, and organisation required to deliver comprehensive healthcare to referred patients without intellectual disability. All the reasonable adjustments were small refinements to usual care that were able to be implemented by the study physician themselves within their practice. Table 1 lists the six elements of comprehensive care alongside the categories of reasonable adjustments, assigning a proposed relevance of each of the reasonable adjustments with the particular comprehensive care element(s) 1–6.

To usual clinical processes

Reasonable adjustments to usual clinical processes were identified as developing communication and engagement skills, becoming familiar with individual lived experience of intellectual disability and what life was like, being aware of the commonly occurring atypical presentations of underlying physical health problems such as behaviour change, relevant for just under a third of the cohort. Such reasonable adjustments were deemed aligned with elements 1–3 (Table 1). Being alert to “diagnostic overshadowing,” the process of attributing a behaviour change in the person to the disability instead of recognising it as a symptom of illness, was an important reasonable adjustment to risk assessment.

Differentiating cognitive impairment in patients due to Down syndrome as opposed to a disease like dementia required some distinctions within clinical processes. In people with intellectual disability due to Down syndrome (in whom there was no dementia) attending the clinic, no limitations in treatment due to the cognitive impairment of intellectual disability were considered. Only in patients with Down syndrome with dementia, were discussions on limitations of care relevant (aligned with elements 1, 2).

Adjustments to clinical processes of comprehensive care were also made on the basis of the relatively younger cohort than that usually referred to specialist physicians albeit both older and younger groups with multiple medical problems. The adjustment involved as much as possible early attention to all acute health and preventive health issues with the aim of reducing the chance of developing more chronic disease (aligned with element 3).

Given the fundamental role of disability supports in assisting the patient accessing healthcare, usual clinical processes now needed to acknowledge a disability support network and develop a health–disability–NDIS interface around how the sectors collaborated for the sake of the patient. These included individually tailored processes to include, demarcate and clarify, problem solve, quantify and qualify the roles of disability supports versus health professionals in facilitating patient access to and participation in their healthcare, both at outpatients but proactively planning for any inpatient setting, since hospitalisation was relatively common among the study population (aligned with elements 3, 4).

To usual clinical content

Adjustments to usual clinical content were identified as inclusion of a dedicated exploration of the nature of the individual’s intellectual disability, skills and limitations, home life, family, usual demeanour, qualifying the nature of disability supports required for health, deemed all particularly relevant for shaping of delivery of comprehensive healthcare with a person-centred approach (aligned with elements 1, 3, 4, 5).

Additionally, usual clinical content was amended to cover both those conditions relating to Down syndrome across the lifespan, and not ignoring non-syndromal and health promotion concerns (aligned with element 1)

Reasonable adjustments to clinical content included the use of additional made-up or existing resources on health issues for adults with Down syndrome. Depending on the resource, these were available for GPs, families, and disability supports including such areas as diagnosing and managing dementia in people with Down syndrome at home, preparing disability supports for inpatient hospital, tips for NDIS planning of necessary and reasonable disability supports for health care in any setting (see Appendix 2) (aligned with elements 3–5).

Reasonable adjustments to content incorporating the provision of easy-read resources on health for attending patients with Down syndrome were notably absent.

To usual clinical knowledge

The audit confirmed that the provision of comprehensive healthcare to people with Down syndrome always involved direct communication with them but now required specific knowledge of their receptive and expressive communication skills. Additionally, it universally involved collaboration with their disability supports, and the disability sector. For these reasons, reasonable adjustments to usual clinical knowledge were identified as involving acquiring and updating knowledge about Down syndrome, communication techniques with people with intellectual disability and understanding the evolving disability sector, NDIS, and any associated regulatory issues impacting on disability supports for healthcare delivery, disability values, and ethics.

A particular knowledge of dementia, occurring eventually in most people with Down syndrome, of its assessment tools in people with Down syndrome, and of local dementia and palliative care services which would step up and play roles facilitated compliance with the elements of diagnosis, management, and identifying goals of care particularly (aligned with element 2).

Compliance with the six elements of comprehensive care additionally required knowledge and understanding of the disability regulatory framework since professional disability support staff were usually involved in disability support for healthcare access and management, for administration of medications, as well as for healthy living. Knowledge of the high turnover of funded disability support needed to be taken into account in shaping health–disability–NDIS professional and sectoral collaborative efforts regarding the specification of disability supports for health management (aligned with elements 5, 6).

To usual clinic organisation

The audit revealed that longer and more frequent appointments than general population patients were made. Extra time was required to learn and implement person-centred communication skills while undertaking a biopsychosocial review, now encompassing information about what life is like for that person with Down syndrome, as well as covering numerous health diagnoses. More time was also required to cater for the numerous people supporting the patient with Down syndrome, to understand and build an interprofessional and intersectoral interface with the disability sector to enable application of the elements of the comprehensive healthcare. Reasonable adjustments to the clinic organisation hence included pre-arranged provision for and overt expectation for disability supports’ attendance, more chairs, a pre-organised set of a more than usual number of appointments following initial referral, a descriptive letter to patients about the clinic and map of location of the clinic and parking, contact numbers. Preparation and documentation of a baseline single comprehensive plan following the first referral typically required two appointments, each of one hour. The third appointment of 30 min was reserved for checking accuracy of that documentation, receiving feedback of the comprehensive healthcare plan provided not normally organised for general population patients, follow up and review of issues in the core document including problem solving, defining the nature of disability supports for health access and participation in the inpatient setting, aspects of ageing and the future. As well, a fourth baseline clinic appointment was made again to check on the delivery of management, progress, and update aspects within the comprehensive healthcare delivery. This extra appointment was more often required when disability support workers rather than family were the primary source of disability support for the patient. Clinic organisation involving longer duration and more frequent appointments was found to be necessary given the complexity of multiple medical problems, frequent staff changes, the need to problem solve operational aspects of disability support for health, and the limitations in health literacy among many disability support workers and people with intellectual disability. Following the initial set of appointments, follow up outpatient review was subsequently suggested annually (as an “opt out” approach), or sooner depending on the need, where assessment of “need” involved considerations of the patients’ views, their clinical health issues and robustness of their disability support system (aligned with element 6).

An adjustment to usual clinic organisation of comprehensive care was the planning with the patients and their disability supports for undertaking diagnostic tests. When multiple tests were required and the patient found the tests difficult collaborative individually designed plans with the local public hospital were made to have all the tests done under an opportunistic single general anaesthetic, such as when dental work was performed, or dedicated if the test was deemed more urgent (aligned with element 6).

Although one of the identified reasonable adjustments in usual clinic organisation was to hold a dedicated monthly outpatient clinic session only for patients with Down syndrome, for many patients with Down syndrome this timing was not suitable so they attended a “non-Down syndrome clinic session.” It was possible to provide comprehensive care with the listed reasonable adjustments in any outpatient clinic run by the study physician and attended by the general population at any time. A dedicated clinical session time for adults with Down syndrome was not necessary as long as the administration staff knew that the patient had Down syndrome and made the necessary adjustments to clinic appointment frequency and duration (aligned with element 5).

Given the observations of frequent subspecialist use, hospital admission, as well a substantial input by disability supports into patients’ healthcare access and participation, usual organisation relating to distribution of the comprehensive care documentation now needed to be adjusted to so that copies were sent to other specialists consulted, hospitals and unless refused by their substitute decision maker or the patient themselves, to the patient’s home address, family, and substitute decision maker as well as the referring doctor (aligned with element 4). Recipients of the documentation would have the opportunity at future outpatient appointments to contribute to review, problem solve with disability supports for the particular health recommendations, central to element 6. Over the years as it became clear that public hospitals were being utilised by attending patients with Down syndrome, their outpatient documentation was also routinely sent to the public and private hospital medical records (aligned with elements 5, 6). Medical documentation of a comprehensive nature would likely provide much helpful background information for hospital-based clinicians providing acute hospital care and with whom the patient with Down syndrome was not familiar.

Discussion

In this audit, adults with Down syndrome, mainly referred by the patients’ GPs, attending a mainstream outpatient clinic by a specialist physician in internal medicine trained in a traditional generic biopsychosocial approach to healthcare, were found to have numerous and diverse biopsychosocial health problems. Their profile was consistent with published data on populations with Down syndrome and confirmed the value and relevance of a comprehensive approach to their healthcare, as determined by its six elements. Compared to an age-matched general population profile, even the findings of multiple medical co-morbidities, a higher than usual rate of unmet health promotion needs, a high-frequency usage of the inpatient hospital setting and a premature age of death would not necessarily be outside the realm of a usual complex patient cohort appropriately referred for comprehensive care to specialist physicians in internal medicine (IMSANZ, 2022). However, certain uniquely distinguishing aspects of the group compared to patients without intellectual disability meant that application of the six elements of comprehensive care (clinically assess and diagnose, identify goals of care, risk screen and assess, develop a comprehensive care plan, deliver that plan and review and improve the plan (Table 1)) could not easily, if at all, be undertaken within mainstream usual practice at an appropriate level of quality and safety the standard requires. The presence of cognitive and adaptive skills limitations due to Down syndrome impacting on their independence in health access and participation, frequent occurrence of additional sensory and motor disabilities, atypical presentations of health concerns, a relatively youthful age group with multiple syndromal and non-syndromal co-morbidities, consistent presence of multiple negative social determinants of health, and clear requirements for daily disability supports to assist in patients’ access and participation in mainstream daily life and including health, involving working closely with families and with a sector outside of health with its own separate regulations were notable differences among this cohort compared to the general population. The audit showed that more than ever for patients with Down syndrome, inquiry into their lifestyle, skills and limitations, communication and understanding, usual demeanour, social and family life, disability supports was necessary to define the nature of what person-centred comprehensive healthcare would be for them. These features heavily influenced the provision of comprehensive care, leading to the formulation of a series of small changes to usual practice in order to facilitate provision of the required standard of quality and safety of healthcare. When retrospectively analysed such reasonable adjustments were able to be categorised by those pertaining to usual content, process, knowledge, and organisation of clinical practice, assisting their implementation and ongoing refinements. They appeared to align well with and support application of all the six elements of comprehensive care (Table 1).

As summarised in Table 1, without adjusting usual clinic processes to now encompass refinements in communication skills, acknowledging a need to work with patients’ disability supports, being alert to atypical presentations of illness, taking into account reduced health literacy it would be much harder to provide and receive all six of the required elements of comprehensive care. Without exploration of communication with the patient with Down syndrome and subsequent adjustments to physician communication style, no sense of person-centredness or patient involvement would be achieved, both undisputed elements for positive healthcare outcomes (Vermeir et al., 2015). Without extra clinical processes to engage at appropriate levels with the individual patient’s disability supports in conjunction with patients with Down syndrome themselves, patients would simply miss out on health care if they are unable to undertake tests and management of the devised comprehensive care plan independently. In the absence of adequate NDIS–disability–health intersectoral systems, it was necessary for additional clinical processes to now also include individually pre-prepared disability supports plans for health access, especially for hospitalisation to ensure that comprehensive care plans could be delivered. Individuals’ NDIS funding for disability supports in inpatient settings to facilitate their access and participation in health care may be available for them (Australian Government, 2013), and was an operational issue for discussion.

Adjustments to usual clinical content involved particularly inclusion and documentation of the detail of the range of multiple disabilities apparent among people with Down syndrome, in conjunction with coverage of the scope of physical health issues. Without such content, elements of risk screening and assessment and development of a single comprehensive plan would be incomplete.

Without adjustments to usual clinic knowledge to now include syndromal and non-syndromal aspects of Down syndrome and aspects of regulatory aspects of the disability sector, NDIS, disability values and legislation, delivery of comprehensive care would be compromised. Opportunities for early disease diagnosis, prevention of chronic disease in this youngish patient cohort could be missed without this adjustment.

The practicalities of the extra reasonable adjustments to clinical content, knowledge, process mean that the usual clinic organisation requires adjustments with longer times, and more frequent appointments allocated. Any reasonable adjustment to usual organisation in setting an allocated time for a clinic only for adults with Down syndrome, was not found to be necessary reasonable adjustment. As long as clinic appointments were longer and more frequent, patients with Down syndrome could be seen at any otherwise mainstream outpatient clinic for comprehensive care. Disability values of inclusion support a completely mainstream clinical setting and availability (Australian Government, 2013, Commonwealth of Australia, 2021).

Many of the reasonable adjustments proposed in the present study are consistent with those recommended and published elsewhere pertaining to adults with intellectual disability accessing different health settings such as hospital (e.g., Moloney et al., 2021), primary care (e.g., Baines, 2013), or, as in the present study, in relation to the delivery of a specific type of healthcare topic (e.g., palliative care, (Tuffrey-Wijne, 2013), medication (Wallace, 2023)). Those papers relating to reasonable adjustments in health settings, mainly focus on the influence of the nature of the intellectual disability in shaping these, and less focus on the relevance of disability supports and the health–disability sectoral interface, as found in this audit and in the papers on specific health issues. In this audit, the nature of the intellectual disability, disability supports, and health–disability intersectoral issues were all major primary drives, not the medical co-morbidity or intellectual disability alone, behind development of the reasonable adjustments to the elements of comprehensive care. In addition to broadening the scope of identified influences on formulation of reasonable adjustments, the present paper includes two additional novel elements to designing reasonable adjustments. Firstly, a dedicated focus to align the proposed reasonable adjustments with particular detailed elements of a standard/topic of healthcare was made. Secondly, efforts were made to categorise the adjustments by relevance to usual content, process, knowledge, and organisation. Using the method in the present paper, along with broadening the scope of influences to include the nature of the intellectual disability, disability supports, and health–disability intersectoral issues, it is suggested that reasonable adjustments can be more flexibly, precisely, and efficiently formulated and applied for other health topics, other Standards, and in other health settings. The system of formulation of reasonable adjustments in the present paper also complements a useful recent Commission release for clinicians pertaining to reasonable adjustments to the Standards for people with intellectual disability in hospital settings (ACSQHC, 2023). That document describes four steps clinicians can take to make reasonable adjustments: plan for reasonable adjustment, understand the person and their disability, communicate directly with the person, and act on the person’s health needs.

The list of reasonable adjustments as described in the present study could feasibly be introduced within public hospitals mainstream outpatient clinic services, with little disruption to business as usual. In this study, they were designed and implemented simply by the study physician without any need for fundamental large alterations to the hospital processes. Nevertheless, they were dedicated and purposeful adjustments, initially requiring extra efforts of individual clinical leadership, for presumed later gained efficiencies. Levels of evidence for the validity and reliability of effectiveness of reasonable adjustments (Moloney et al., 2021), as well staff culture, attitudes, and knowledge influence the ability and motivation of health service staff and organisations to initiate reasonable adjustments to hospital services to improve service accessibility to patients with intellectual disability (Tuffrey-Wijne et al., 2014). It is speculated that levels of evidence for the validity of reasonable adjustments could potentially be improved by including the additional acknowledgement of the influence of disability supports and the disability–health sector in the design of reasonable adjustments, as in this study, and tested more reliably by looking at the components of the reasonable adjustments. A perceived rigour from the audit with the alignment of the reasonable adjustments with specific elements of the comprehensive care (or the particular health topic), as displayed in the present paper, potentially also enhances their appeal as the adjustments appear to make intrinsic sense. Furthermore, the breaking down of the reasonable adjustments to categories of knowledge, content, process, and organisation potentially simplify their introduction to mainstream practice. Though reasonable adjustments do not necessarily intrinsically require systemic changes, degrees of systemic involvement will likely assist in their formulation, implementation, and testing. To this end, the Commission does encourage mainstream individual clinical leadership to advance all measures to enable implementation of all the quality and safety standards for all populations in all settings ideally using innovation skills, optimising current resources, working within hospital clinical governance structures, across the public and private sectors, with of course consumers through its Clinical Governance Standard (ACQSHC, 2021d).

Limitations of this observational audit include a single setting, a solo physician seeing patients with and without intellectual disability or Down syndrome, a single set of patients with Down syndrome, a private practice health outpatient setting, and a self-reported study. These limitations could impact on the applicability of the proposed reasonable adjustments to adult outpatients with Down syndrome in other settings. Nevertheless, the biopsychosocial results observed in this cohort are likely at least somewhat representative of other adults with Down syndrome across Australia, given that their disability and medical profile are similar to that published elsewhere (Tracy, 2011). Across the nation, the regulations, standards, and practice of NDIS are the same, though each state has its own state disability regulations to be considered as these may impact on some of the reasonable adjustments to healthcare delivery identified in this study. That the study audit is self-reported creates an obvious risk of bias however, the range of suggested reasonable adjustments in this study is consistent with others (Bigby et al., 2018; Moloney et al., 2021; Tuffrey-Wijne et al., 2014), and the perceived alignment with the elements appears rational, though more detailed when compared to other reports of approaches to reasonable adjustments. Given the diversity of environmental settings, values, cultural and daily life activities, intellectual disability experienced by people with Down syndrome, it is likely that additional reasonable adjustments should be considered. The disability sector can help in this regard, for example, in the preparation of easy-read health documents (e.g., Council for Intellectual Disability) to be used in health settings. The study did not report on opinions of the set of reasonable adjustments by patients with Down syndrome or their disability supports, as such information was not sought in clinical practice and so could not be reported on. However, at an individual clinician–patient level, within the set of an individual’s clinical appointments, one of the reasonable adjustments was allocation of more clinic time to specifically allow expression of opinions, discussion, and problem solving around individualised assessment and delivery of their comprehensive healthcare. To gain further consumer feedback, the audit and cluster of reasonable adjustments have been forwarded to the State Down syndrome organisation, and to the local hospital Consumer Advisory Group.

The study did not attempt an assessment of the health outcomes of the reasonably adjusted outpatient clinics providing comprehensive health care and whether or not these measures would address the well-documented preventable premature mortality and morbidity experienced by adults with Down syndrome. It did highlight, however, that for adults with Down syndrome referred to a mainstream outpatients setting in which healthcare is delivered by a mainstream physician trained in internal medicine, it is possible, by the implementation of a number of smallish changes, to provide a level of safe and quality health care that meets the Comprehensive Care Standard as assessed by its six elements. In the setting of the present audit results, it is speculated that without the reasonable adjustments it would have been harder for patients with Down syndrome to access and participate in their comprehensive healthcare, and also for clinicians to provide the level of comprehensive care as required by the Standard.

Conclusion

In summary, an audit of a case series of adults with Down syndrome attending a physician outpatient clinic within a mainstream practice was conducted identifying reasonable adjustments aligned with the application of six elements (clinical assessment and diagnosis, identify goals of care, risk screening and assessment, develop a single comprehensive care plan, deliver comprehensive care, review, and improve comprehensive care delivery) of the Comprehensive Care Standard. Although Down syndrome is not a medical illness, the findings of multiple medical co-morbidities per person reinforced a relevance of the comprehensive approach to their healthcare. The presence of intellectual disability, requirements for disability supports for healthcare, an involved disability sector, an underdeveloped health–disability–NDIS intersectoral interface, were fundamental influences on the need for and shaping of reasonable adjustments to usual comprehensive care across all of its six elements. By breaking down reasonable adjustments to manageable small changes relevant for usual clinical process, clinical content and knowledge and organisation to improve access to and participation in healthcare by adults with Down syndrome conceivably facilitates their uptake by individual physicians. With the implementation of the reasonable adjustments, comprehensive healthcare could be offered within a separately timed clinic for adults with Down syndrome within a mainstream outpatient setting or within a general population outpatient clinic. More global uptake of reasonable adjustments to mainstream health services for adult patients with Down syndrome is required and would appear to involve stronger clinical leadership, making better use of existing resources, enhancing consumer partnership, collaborating more with the disability sector at the health systems level, and improving attitudes towards the importance of high-quality healthcare for people with Down syndrome.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Appendix 1.

Format of the reasonably adjusted outpatient clinical service for adults with Down syndrome as developed by physician/author over a period of 10 years (from which data in the manuscript derive).

1. Referral to the physician of an adult with Down syndrome is received.

   1. Receiving physician reviews the referral and triages for appointment urgency

   2. Appointment papers sent to patient and their disability supports:

      1. A set of four baseline appointment days and times offered but can be adjusted (#1 and #2: 1 h each, and #3 and #4: 30 min each; all completed over six months)

      2. Pre -appointment information and questionnaire to be filled in and brought along to first appointment:

         1. about the set of clinical appointments, what they are aimed at providing, what is recommended to bring along, and accompanying people (main brief is comprehensive health care delivery)

         2. questionnaire listing names and contacts of patient, family, brief information about the intellectual disability, disability supports, disability service provider, person responsible/guardian, medications, health professionals, immunisations, any notes of behaviours of concern to be pre-filled and brought to first appointment

         3. contact email and work phone of the physician and clinic administrative staff provided to patient and person assisting with making the appointment

         4. consent form by the patient or person responsible for the clinician to potentially share documentation with appropriate recipients, seek relevant health documentation

         5. map and parking of the clinic location

      3. At each appointment, administration staff check on accuracy of contact details

      4. A week prior to each appointment, each patient’s nominated contact person (or themselves) rung by administration staff to confirm the time of appointment

2. The first baseline appointment, #1, is 1 h (during initial meeting the focus is on establishing a rapport and finding out about the patient with respect to their intellectual disability, personality, their life circumstances absorbing this information to clarify what person-centred health care is for them; addresses the “psychosocial” aspects of biopsychosocial health care)

   1. Spending time in establishing rapport, introductions

   2. Noting names of accompanying people and if staff how long they have known the patient with Down syndrome

   3. Going over what the set of appointments is about, and what the role of the physician is (in contrast to General Practitioner)

   4. History starts: developmental history, cognitive and functional skills and limitations, motor skills and limitations, accommodation, life growing up, family, supported decision making arrangements (for health, finances, NDIS, services, accommodation), friends and social skills, NDIS funded supports and adequacy, day time activity and relaxing interests, usual demeanour and personality; at the end of first baseline appointment check if blood tests can be undertaken; if so provide request form; invite relevant others to attend the next appointment

3. The second baseline, appointment, #2, 1 h (this moves onto the “bio” part of biopsychosocial with more focus on the health issues)

   1. Re-establish rapport; going over what we are here for and what we talked about last time

   2. Names of disability supports present and how well they know the patient

   3. Continue history: full history including all medical issues, syndromal and non-syndromal systems review, healthy living, sensory, immunisations, medications, allergies, family history, application of any baseline cognitive or dementia screening tools only if required

   4. Physical examination

   5. Review of the blood tests from after visit #1

   6. Documentation in a long letter describing the

      1. biopsychosocial comprehensive healthcare assessment from #1 and #2 appointments, examination, results of blood tests, diagnoses and management plans in conjunction with those present

      2. will likely include follow up issues for patient, physician, GP, disability supports or disability service provider

      3. may include recommendations for referral to other doctors, training services, community health services

      4. may include recommendations on specific disability supports required for health care access and participation by the patient with Down syndrome

   7. Send letter to the referring doctor, patient and their disability supports, guardian/supported decision maker, and check appropriate recipient list (which includes the local public hospital which would be used if hospitalisation required)

   8. Discuss that the documentation aims to provide a comprehensive healthcare review using a biopsychosocial framework

   9. Offer the patient and disability supports the option to fill in an Adaptive Behaviour Questionnaire (ABS, Nihira et al.) for baseline assessment and send back to physician (who will collate and provide to patient as a baseline)

4. The third baseline appointment, #3, ½ hour (a few months after #2)

   1. Introductions and clarify everyone knows why and what here for

   2. Check accuracy of the letter from above; document corrections

   3. Discuss updates of healthcare issues in the letter and problem solve with patient and their disability supports; work out what needs to be done or improved; document

   4. Explicitly discuss and document the disability supports needs for various health scenarios: healthy living, appointments, inpatient care, capacity for health decision making; clarify disability support staff training needs

   5. Explicitly raise aspects of ageing for the patient, future planning, “who’s next,” family supports and input

5. The fourth baseline appointment, #4, ½ hour-completion of baseline comprehensive healthcare assessment

   1. Check on all of the above

   2. Anything new in life and health

   3. Problem solve in terms of healthcare issues, for example, how best to engage the patient in their own health care, resolving intersectoral issues; take action for solution

   4. Letter to patient, referring doctor and other appropriate recipients

6. From then on, consider at least annual review of 1 h or 6 monthly, or sooner as required by the patient and disability support needs.

   1. As per Australian regulations, this will require an up to date referral from the patient’s GP

   2. Letter to patient, referring doctor and appropriate recipients

Appendix 2. Health–disability interface: examples of NDIS and disability-related sectoral regulations, legislation and values, and resources developed by the author relevant for both collaborative disability and health care provision for people with Down syndrome

Article 25 United Nations Convention on the Rights of Persons with Disabilities (https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-25-health.html)

Disability Discrimination Act 1992 (Cth)

Disability Services Medication Management Framework 2022 (Disability-Services-Medication-Management-Framework-June-2022-FINAL.pdf)

NDIS Practice Alerts (https://www.ndiscommission.gov.au/workerresources)

NDIS Worker Code of Conduct (https://www.ndiscommission.gov.au/about/ndis-code-conduct)

New NDIS Practice Standards and Quality Indicators (https://www.ndiscommission.gov.au/providers/registered-ndis-providers/provider-obligations-and-requirements/ndis-practice-standards-1)

Position Statement – Charter of Disability, Aged Care, and Healthcare Rights (Calvary Hospitals) (https://www.calvarycare.org.au/wp-content/uploads/2022/08/Position-Statement-on-Disability-Aged-Care-and-Healthcare-Rights-_Final … ..pdf)

Policy proposal for the operational interface between the National Disability Insurance Scheme (NDIS), disability and health in Tasmania for: adult NDIS participants with intellectual disability during hospitalisation. Position paper developed by the Tasmanian NDIS-Disability-Health Advisory Group (personal communication, the author)

Principles to determine the responsibilities of the NDIS and other service systems (https://www.dss.gov.au/sites/default/files/documents/09_2021/ndis-principles-determine-responsibilities-ndis-and-other-service-1.pdf)

Reasonable adjustments to usual content and organisation, process: documents prepared by the clinician for family and funded disability supports, health professionals relevant in the health–disability interface (personal communication, Robyn Wallace)

• Reminder health issues for adults with Down syndrome

• Planning for individual health and support profile for adult patients with disabilities presenting to hospital

• Tables on dementia in adults with intellectual disability-diagnosis, communication, facilitating care, and planning

• Ageing Matrix-planning for the future

• Tip Sheet for Adult NDIS Participants and their Families for NDIS Planning for Disability Supports for Health and Well Being