The case for change
Health outcomes for people with ID
People with ID have poorer health outcornes when compared with the general population.
- Life expectancy can be up to 20 years less than the general population.7
- Age-specific mortality rates from a range of health problems are higher as they are often undiagnosed or poorly managed.8
- People with ID have less access to and gain less benefit from public health or preventive health programs.
- There is less access to primary and secondary prevention.9
- There is greater use of hospital emergency departments.
- People with ID experience longer and repeated hospital admissions.10
People with ID are likely to have one or more health conditions. People with ID across all age groups are more at risk of developing mental illness than the general population. Frequently, rnental health conditions are under recognised or inadequately managed.
People with ID may face barriers when accessing the health system because of difficulty in understanding what is going to happen or negative or uninformed staff attitudes about people with disability. This has been graphically documented by the patient journey work undertaken by the AO Intellectual Disability Health Network.11
The poorer health of people with an ID has direct system costs. For example, people with a disability aged 35 to 64 cost the NSW health system more than other NSW citizens12 of comparable age. This is because of a higher number of separations13 per person and a longer average length of stay.
Delivery of quality services for people with ID in mainstream health settings can be challenging for many reasons, with many challenges based in communication between health professionals and people with ID and lack of knowledge on the part of health workers about how to best meet the needs of people with ID. Working effectively with a person with ID can minimise opposition to physical examinations, tests or procedures and reduce resistance to attending or staying for medical appointments.14
- There are three health barriers faced by people with ID.15
- People with ID may not understand something is wrong with their health, and/or not know what to do, and/or not know where to go for help.
- Carers and disability support staff may not recognise the symptoms, understand the consequences of, or know who to contact about heaIth concerns.
Health professionals may lack knowledge and experience in working with people with ID.
These barriers mean that having ID is likely to result in poorer health. For some, a specific health event may lead to reduced intellectual functioning, exacerbation of anxiety and mental illness or challenging behaviour.
Recent data linkage about hospitalisation in NSW underlines this issue.10
There is support available to improve the health services we offer and, in turn, the person's experience of health service delivery and ultimately, of health outcomes.
The Essentials provides support to LHDs and SHNs to improve the health outcomes of people with ID in the context of both the requirement for disability inclusion action planning and for the rollout of the NDIS.
Access to quality healthcare is a fundamental human right for everyone and this is recognised in the UNCRPD and supported by NSW Health policy.
Key findings from a 2013-14 survey of NSW LHDs by the Network showed that:
- 42% of LHD disability action plans did not include support for people with ID
- 89% of LHDs did not have a key contact or resource person within their service for people with ID and their families/carers
- 79% of LHDs had no information specifically designed for people with ID
- 95% of LHD's had no routine supports and adjustments available for people with ID
- 73% of LHD's provided no staff training in ID awareness (though feedback indicates a keen interest on the part of staff for training in this area).
The survey is discussed in the Context report and toolkit to, health services tor people with intellectual disability, 2015 (Section 7).
NSW Disability Inclusion Act 2014 - Disability inclusion action planning
The NSW Disability Inclusion Act 2014 and subsequent regulation aims to recognise the rights of people w th disability and ensure that they can access mainstream services and be part of the community. The legislation requires the development of the NSW Disability Inclusion Plan together with separate disability inclusion action plans by each government department and local council in NSW.
NSW Health has developed a system-wide DIAP. The health DIAP describes the steps which NSW Health will take to improve access to mainstream health services and community health services for people with disability and improve equitable access to employment. The plan contains four key areas for concentrated action to improve inclusion.
- promoting positive attitudes and behaviours
- creating liveable communities
- providing equitable systems and processes
- supporting access to meaningful employment opportunities.
These mirror the key goals of the NSW Disability Inclusion Plan.
The system-wide NSW Health DIAP sets the vision and establishes the expectation that LHDs and statutory health organisations will develop and implement their own locally relevant inclusion strategies. It aims to elevate the voices of people with disability in planning and designing health services and facilities to promote improved inclusion, improved systems and processes and inclusive attitudes and behaviours.
The Essentials contains suggestions and strategies to support improved health outcomes for people with ID. It aligns with and supports the NSW Health DIAP.
The National Disability Insurance Scheme
A better health service for people with ID in NSW requires commitment to ongoing work and adaptability as major reforms roll out.
Foremost amongst current reforms is the rollout of the NDIS. As an insurance scheme, the NDIS mandates support for eligible Australians with permanent and significant disability based on their individual needs and preferences.
The NDIS was launched in July 2013 at a number of trial sites across Australia in response to an inquiry by the Productivity Commission and the 2011 agreement by the Council of Australian Governments (COAG) supporting the need for radical reform of disability supports in Australia. The NSW trial site was in the Hunter region. The NDIS is being implemented across NSW between 1 July 2016 and 30 June 2018.
NSW Health is undertaking significant planning in line with the NDIS.
NSW Health welcomes this new era for people with disability. A transition plan will assist LHDs to respond to the reforms in their commitment to deliver health services to people with disability. '6 Key aims of the new way of delivering health services to people with a disability under the transition plan are to:
- provide integrated healthcare to people with disability while supporting their access to the NDlS
- improve preventive care and in the longer term reduce hospitalisations
- address other acute episodes as a result of better, integrated health for people with disability in the community.
Health services are likely to become increasingly central to multidisciplinary care and leadership in the context of transition to NDIS.
The use of the tools and suggestions in the Essentials vvill strengthen and support efficient and effective transition to the NDIS, for example, in helping to confirm roles. Strong collaborative action with the NDIS will lead to better outcomes all round as a healthy person will have lower disability support needs and a person with good disability support will be healthier.
The importance of mainstream and specialised health services for people with ID
The reform initiatives described in this document and elsewhere in the resource pack recognise the continuing critical contribution of health services to the comprehensive care of people with ID. They acknowledge and emphasise the need to continue to provide a range of mainstream health services across primary, secondary and tertiary settings. Improvements and enhancements to health service utilisation are flagged as integral to the reform process.
Appropriate and equitable access to mainstream health services is a key commitment of NSW Health. Service capability is underpinned by supportive policy, appropriate culture and practice along with training and development opportunities. Mainstream services include those delivered in the community, emergency departments,. ambulatory clinics and inpatient settings.
An essential cornerstone of comprehensive, evidence-based and networked clinical services is access to centres of additional expertise and specialisation. Tertiary hubs and related hub-and-spoke arrangements are well described in a range of clinical domains and jurisdictions. The capacity to escalate care through appropriate channels and defined pathways for either advice or referral are key to integrated care and to delivery of 'right care, right place, and right time'. Such channels ensure professional support, continuing clinical education and maintenance of quality across the system. The literature review of health service models of care for people with ID supports the role of tertiary centres specific to the clinical challenges relating to this population. Local evidence gathered in the development of the resource pack and the Essentials reinforces the need for access to specialised expertise and support.
NSW Health hubs or centres of specialised expertise in support of the healthcare of people with ID have evolved consistent with the above principles and in response to local needs, across a broad spectrum of clinical settings and age categories. These centres vary in their target populations, models of care and clinical focus, according to their history and local circumstances. Examples of particular focus and expertise include aspects of early childhood and developmental delay, complex illness/syndromes involving ID, Aboriginal or CALD populations, transition between paediatric and young adult healthcare, and mental health comorbidities and challenges for people with ID. These hubs play essential roles in diagnosis and assessment, well exemplified by the early childhood teams, as well as providing leadership in care coordination and continuing guidance. Despite variations in service models, these hubs need to share some or all of the common elements of a specialised health service.
- Multidisciplinary care is delivered by a team of clinicians with particular interest and expertise in the healthcare of people with ID.
- Consumer engagement and support is central and consistent with appropriate inclusion of people with ID.
- Pathways and channels to escalation for either advice or referral are clearly identified and practiced.
- Networked integration into a comprehensive approach to appropriate care is in place.
- Feedback to and support of mainstream health services occurs.
- Research towards and application of best available clinical evidence are pursued.
Since 2011, NSW Health has funded three newly established centres of expertise as pilots to explore and enhance existing models of care. At the same time the ACI Intellectual Disability Health Network was established as a guiding support, network and leadership structure across the services.
As with the historic hubs, the new centres vary in their specific focus of clinical interest as well as in the particular populations they serve. However, each one adhered to the principles above and in their subsequent evaluation documented the important, continuing place for such teams in a comprehensive NSW Health response to the needs of people with ID.
These NSW Health centres of expertise, whether old or new, are distinct from 'specialist services' as defined within the disability agencies. However, it is considered essential that the two domains cooperate and, as such, constitute a key element of interagency collaboration and integrated care. In addition individual clinicians across NSW Health have developed and are providing clinical expertise in accordance with particular health problems of people with ID. These contributions are embraced as part of a systemic approach that supports the work of multidisciplinary health teams.
The centres/teams described in this section provide tertiary expertise and act as hubs of networking in support of mainstream healthcare services and professionals. In concert, these different levels of response provide a comprehensive response to the needs of people with ID.
The documents, resources and tools encompassed in the resource pack and the Essentials provide a comprehensive range of support and guidance to NSW Health mainstream services.
The distribution and service configuration of tertiary centres is recognised to be challenging and in process of further development. It is limited by the number of trained professionals available to the system. LHDs should consider the establishment/maintenance of or access to such centres for patients with ID and for the clinical professionals delivering mainstream services. The particular challenges of access to such expertise in rural settings may be addressed by appropriate partnership arrangements with centres in metropolitan LHDs.
- NSW CID & Australian Association of Developmental Disability Medicine Position statement on the health of people with intellectual disability. Sydney: NS\N CID; 2014
- Australian Institute of Heal th and Welfare (All lW). Health status and risk factors of Australians with disability 2007-08 and 2011-12. Canberra: AIHW; 2016.
- NSW Ombudsman. Report of reviewable deaths in 2012 and 2013 Volume 2: Deaths of people with disability in residential care. Sydney; NSW Ombudsman; 2015.
- Troller J, Srasuebkul f\ Xu It, et al Cause of death and potentially avoidable deathS in Australian adults with intellectual disability using retrospective linked data BMJ Open 2017;7:eOl 3489. dol: 10.1136/bmjopen-2016-013489
- NSW Agency for Clinical Innovation (ACI). Patient journeys, Sydney: ACI; 2015.
- NSW Government Department of Family and Community services. Use of emergency and inpatient hospital services by ADHC clients - Final Report. Sydney: NSW Government Department of Family & Community Services; 2012.
- The number of separations (death, discharge, sign, out or transfer) is the most commonly used measure of the utilisation of hospital services rather than admissions
- NSW Ombudsman. Report of reviewable deaths in 2012 and 2013 Volume 2: Deaths of people with disability in residential care. Sydney: NSW Ombudsman; 2015.
- Taggart L, McKendry L. (2009) Developing a mental health promotion booklet for young people with learning disabilities. Learning Disability Practice 2009; 12(10):27-32. 16 NDIS Transition Plan.