People with complex needs
Jump to a section below
People with intellectual disability can have complex needs. While there is no agreed upon definition of complex needs, there are two elements that are consistently mentioned: a) the presence of a disability and other health, social and economic issues  and b) a disconnect between support needs and the services available to meet these needs. 
Significant barriers accessing services and supports
People with intellectual disability and complex needs face significant barriers to accessing services and supports. Service models are often inflexible and do not adequately respond to the breadth of all the person’s needs. Having multiple needs means that there often is no one framework or service that can support all their needs. This may result in service system fragmentation, poor continuity of care, long waiting times, high costs, unavailable services or not meeting service eligibility requirements.
Extensive interagency collaboration and case management is crucial
Extensive interagency collaboration will often be required to support the multiple and complex needs of the person. To learn more about working collaboratively with others, see Working with people with intellectual disability and their team section.
Supporting a person with intellectual disability and complex needs also requires good case management, which can be expensive and time consuming without a case co-ordinator. Case co-ordinators, however, can be an added expense. Even if supported by the person’s NDIS plan, limited funds mean that the hours are often utilised elsewhere.
Communication difficulties can present a major barrier to the person being involved in planning and making decisions around how their support needs can be met. It may also be difficult for the person to communicate their medical history to health and mental health professionals, with many relying on support networks to do so. See the Communication section for more information.
Key challenges in meeting the mental health needs of people with complex needs
There is an over-reliance on mainstream services that are not well-equipped to meet the mental health needs of people with intellectual disability, let alone those with complex needs. Mental health professionals often lack knowledge, skills and confidence in providing services to people with intellectual disability and complex needs.
Diagnostic overshadowing, where emotional or behavioural disturbances are attributed to the person’s disability, may lead to health and mental health conditions going undetected and untreated or inadequately managed. Professionals may assume that these disturbances are part of the person’s intellectual disability, rather than a symptom of an undetected health problem. With multiple physical and/or mental health conditions, it can be difficult to determine what a change in behaviour may be due to, and there is often an under-identification of the person’s needs.
People with intellectual disability and complex needs may experience difficulty navigating the NDIS, which can lead to key support needs or therapies being overlooked or unaddressed, resulting in further exacerbation of their condition. It is difficult for the person’s complex needs to be recognised, managed and supported under the current NDIS scheme. The NDIS planning system does not accommodate severe impairments and when there are multiple ‘layered’ complex needs.  This means that the person may be underfunded and undersupported, and there can be extended delays to then readdress the funding needs.
People with intellectual disability and complex needs often have many people who support them in different ways, meaning it can be difficult to co-ordinate and prioritise interventions. There may also be high turnover of support staff, or multiple support staff who have little communication with each other, meaning that health and mental health problems can be overlooked or missed. Funding limitations may further preclude the time that professionals and case co-ordinators have to use towards collaborative activities.
There is a lack of evidence-based tools and practices that assist professionals and services to work together effectively to support the person. Using evidence-based practices can help in achieving the best possible mental health outcomes but evidence-based tools and practices are limited in the area and mainstream professionals may not necessarily be aware of the evidence base.
How I can meet the mental health needs of people with complex needs
All professionals can make sure that important information (e.g. referral pathways, mental health promotion materials, care plans) is available in formats accessible to each individual so that they and their support networks can understand this information. 3DN has a toolkit on how to make information accessible. Also see the Communication section.
If the person with intellectual disability has not had a comprehensive health assessment for a while, it is important to organise this process so that any unmet needs can be detected. The Comprehensive Health Assessment Program (CHAP) is a useful tool for doctors that is designed to prompt a comprehensive health assessment for people with intellectual disability.
Mental health professionals can also link in with the person’s GP and obtain other information during mental health assessment.
Mental health professionals can provide psychoeducation to people with intellectual disability and their support networks and disability workers. Disability workers typically do not have qualifications in health and mental health and may not be adequately trained to provide mental health support to those with multiple and complex needs. Providing psychoeducation can encourage disability workers to take an ongoing active role in supporting the person’s treatment and monitoring of symptoms.
Mental health professionals responsible for prescribing should carefully consider the use of psychotropic medication in people with intellectual disability and complex needs. People with intellectual disability often also use multiple medications and it is important to consider the effects of polypharmacy. For detailed information on the use of psychotropic medication and responsible prescribing, see the Treatment section. Conversely people with intellectual disability should not be denied the opportunity to benefit from an appropriately prescribed medication simply because there are challenges in assessment.
Disability professionals providing services to people with intellectual disability and complex needs should take note of changes to the person’s behaviours and daily support needs, as they may indicate symptoms of an unrecognised health or mental health condition. It is important to share this information with others who provide support so that they can also look for changes. Having consistency in staff so that disability workers provide support to the same individuals is also important, as it can improve their ability to notice any behavioural changes. Additionally, there should be consistency in how behavioural interventions are delivered by support staff.
Sharing information between professionals is an important part of meeting the person’s support needs. With the consent of the person with intellectual disability, health and mental health professionals can ask carers and support networks to collate the person’s health and mental health information into a folder so that this information can be given to all those who provide support to the person, including specialists. Some examples of folders include the A2D Together Folder and the Council for Intellectual Disability’s My Health Matters folder. We also have a mental health passport that can be used to provide information about the person’s mental health and contacts.
There are various ways that professionals can work with each other. Some examples include establishing communication with relevant stakeholders, sharing information and working together through regular joint case conferencing and review.
It is important to encourage collaboration and innovation when the solution is not obvious, such as by jointly sharing possible ways forward, prioritising an option and jointly supporting its implementation and evaluation. Professionals can also seek support from specialised services to assist with periodic in-person or videoconferencing review.
Other ways of working together with others can be found here.
Health, mental health and disability professionals can improve knowledge, skills and confidence through training and professional development. It is important to take advantage of any training in your workplace and to seek out other training, such as online learning. 3DN’s Intellectual Disability Health Education provides self-paced online learning courses across a range of topics including mental health, behaviours of concern, healthy lifestyle interventions and cardiometabolic health.
Mental health professionals may also find the Intellectual Disability Core Competency Framework Manual and Toolkit to be helpful.
For people with intellectual disability who do not have a care co-ordinator, it often falls to support networks to manage the person’s needs. However, the success of this approach depends on the supporters’ health literacy, available time, socioeconomic status, and other factors. Co-ordinating supports for people with intellectual disability and complex needs can be stressful, so it is important for carers to practise self-care when possible. For more information about carers' self-care, see Looking after myself.
For health and mental health professionals working with people with intellectual disability and complex needs, it is important to link in with specialist services who can provide oversight or a second opinion. For example, for those working in the hospital system, Clinical Nurse Consultants and other experienced or senior colleagues may be able to assist.
When appropriate, it is also important to refer to specialist services, especially services that specialise in multiple and complex medical needs. These services may be difficult to find or access, so it is important to obtain tertiary service advice, where possible, and network in the community to find such services. Some specialist services that may be able to help include the Specialist Intellectual Disability Health Teams (e.g. Northern Sydney Intellectual Disability Health Team), the NSW Developmental Disability Health Unit and the South Eastern Sydney LHD Developmental Disability Assessment Team (DDAT). See further services on this list of Specialist Intellectual Disability Health Teams.
People with intellectual disability who have high support or complex needs may also be able to receive NDIS funding for a specialist support co-ordinator.
- See our list of Specialist Intellectual Disability Health Teams.
- NSW Developmental Disability Health Unit is based at Royal Rehab Ryde and is a medical and health consultation service for adolescents and adults, working in conjunction with the person’s GP. The service can be used when the person’s health needs require a specialist approach.
- South Eastern Sydney LHD Developmental Disability Assessment Team (DDAT) provides a comprehensive range of multidisciplinary and inter-agency clinic services for people with developmental delay or disability and intellectual disability across age groups. The service requires a referral from a GP.
- The Statewide Intellectual Disability Mental Health Hubs provide advice, joint consultations and capacity building opportunities:
- Local Health District Intellectual Disability Co-ordinators could also provide further information and advice.
- The Comprehensive Health Assessment Program (CHAP) is a useful tool for doctors that is designed to prompt a comprehensive health assessment for people with intellectual disability.
- The Admission2Discharge (A2D) Together Folder can keep together the person’s medical information to improve the hospital experiences of people with intellectual disability.
- The Council for Intellectual Disability’s My Health Matters folder is designed to help improve communication between people with intellectual disability and their health providers.
- 3DN’s Intellectual Disability Health Education provides self-paced online learning courses across a range of topics including mental health, behaviours of concern, healthy lifestyle interventions and cardiometabolic health.
- 3DN’s Positive Cardiometabolic Health for People with Intellectual Disability: An Early Intervention Framework guides medical professionals through cardiometabolic risk screening for people with intellectual disability. There is a version for adults and a version for adolescents. The framework also provides intervention strategies tailored to people with intellectual disability.
- The Intellectual Disability Core Competency Framework describes the skills and attributes required by mental health professionals to provide quality services to people with intellectual disability. There is also a Toolkit that provides practical information and links to resources.
Additional background information
Compared to people in the general population, people with intellectual disability experience a greater number of physical [4, 5] and mental health  problems across the lifespan. People with intellectual disability are more likely to have:
- mental illness [5, 7, 8]
- heart disease 
- epilepsy (15 times more common in people with intellectual disability) 
- osteoporosis and fractures
- respiratory complications
- dental problems (up to 8.5 times more common in people with intellectual disability) 
- certain types of cancers
- restricted mobility
- premature ageing
- gastrointestinal problems
- vision impairment and eye disorders (up to 20 times more common in people with intellectual disability) [4, 9]
- hearing impairment [4, 5]
- sleep disturbances.
People with intellectual disability receive less preventative health care than those in the general population. This emphasises the need for people with intellectual disability and complex needs to access preventative health measures (e.g. immunisations and routine health screenings) and health education activities (e.g. fitness and injury prevention programs). Health professionals should adapt health promotion programs and information about preventative health care for people with intellectual disability.
- Rankin J, Regan S. Meeting complex needs: The future of social care. Institute for Public Policy Research; 2004.
- Collings S, Dew A, Dowse L. Support planning with people with intellectual disability and complex support needs in the Australian National Disability Insurance Scheme. Journal of Intellectual & Developmental Disability. 2016;41(3):272-6.
- King M. Dedifferentiation and difference: People with profound intellectual and multiple disabilities and the National Disability Insurance Scheme (NDIS). Journal of Intellectual & Developmental Disability. 2020;45(4):320-5.
- Beange H, McElduff A, Baker W. Medical disorders of adults with mental retardation: a population study. Am J Ment Retard. 1995;99(6):595-604.
- van Schrojenstein Lantman-De Valk HM, Metsemakers JF, Haveman MJ, Crebolder HF. Health problems in people with intellectual disability in general practice: a comparative study. Fam Pract. 2000;17(5):405-7.
- Cooper SA, Smiley E, Morrison J, Williamson A, Allan L. Mental ill-health in adults with intellectual disabilities: prevalence and associated factors. Br J Psychiatry. 2007;190:27-35.
- Einfeld SL, Piccinin AM, Mackinnon A, Hofer SM, Taffe J, Gray KM, et al. Psychopathology in young people with intellectual disability. JAMA. 2006;296(16):1981-9.
- World Health Organization. ICD 10 International Statistical Classification of Diseases and Related Health Problems: Tenth ed. World Health Organization; 2004.
- Kapell D, Nightingale B, Rodriguez A, Lee JH, Zigman WB, Schupf N. Prevalence of chronic medical conditions in adults with mental retardation: comparison with the general population. Ment Retard. 1998;36(4):269-79.
- Scott A, March L, Stokes ML. A survey of oral health in a population of adults with developmental disabilities: comparison with a national oral health survey of the general population. Aust Dent J. 1998;43(4):257-61.