New tools and resources for carers supporting people with intellectual disability. Launched at a Research to Action Day at the University of New South Wales, Sydney, the resources include: e-Learning modules for carers, disability professionals and mental health professionals, the Intellectual Disability Mental Health Core Competency Framework: A Practical Toolkit for Mental Health Professionals and Podcasts on responsible prescribing to people with an intellectual disability for health and medical professionals. A disability e-Learning module aimed at health professionals was also launched.
The e-Learning modules for carers is intended to equip carers in recognising and responding to the mental health needs of people with intellectual disability. There are eight modules comprising:
- Foundations – About Intellectual Disability/About Mental Health
- Mental Health & Illness – Mental Health and Intellectual Disability/Detecting changes in Mental Health and Wellbeing
- Specific Mental Illness – Signs and Symptoms of the following: Mood Disorders/Anxiety Disorders/Schizophrenia and other Psychotic Disorders/Dementia.
A downloadable ‘wellbeing record’ document is also included to support carers to keep a record of the person’s wellbeing.
The shortage of education opportunities and guidelines in this area contribute to the lack of skills, knowledge and confidence reported by the health and disability workforce when working with people with intellectual disability. To address these barriers these resources have been developed to provide information and education on intellectual disability physical and mental health by the Department of Developmental l Disability Neuropsychiatry (3DN), part of the School of Psychiatry with UNSW Medicine.
People with intellectual disability experience between three and five times the prevalence of mental health conditions than the general population, head of 3DN and chair of Intellectual Disability Mental Health, Professor Julian Trollor said. And, often this group also experience multiple barriers when it comes to accessing quality mental health services.
Trollor said the discussion focus was on improving the mental health and wellbeing of people with an intellectual disability.
There are six suites of resources available to improve the journey through the health system to help train staff and inform training pathways, he said, and if used appropriately can reinforce confidence and skills. “Another important aspect is the way these can work across sectors within a clear, multi-disciplinary framework which is in dire need given our move to the NDIS and the necessity to relate to mental health partners in support of people with intellectual disability.” According to Troller people with intellectual disability present to emergency departments twice as often and cost twice as much as those without the disorder, “this suggests a lack of community based support for those with intellectual disability who also have mental health issues”.
“While we have a notion of what needs to done, in essence the work of this department is entirely dependent on future funding,” Troller told F2L. “These resources will continue in maintenance mode for mental health and the e-learning portal because we don’t have future funding but hopefully we can convince the Ministry of Health that’s warranted. Hope to continue to promote our cardiometabolic work and the next phase is a small project where we are developing a healthy lifestyle intervention for people with disability. This is a combination of dietary and exercise interventions and medication review where it might be contributing to either dietary imbalance or problems with participation in exercise programs. If that pilot proves feasible we will try and get more funding for a larger scale trial to try and reduce the cardiometabolic risk to people and prevent unnecessary deaths. Expanding our linkage with NHMRC funding to look what happens to healthcare during the transition to the NDIS and the state-based healthcare systems and how the outcomes for people with disability and how the NDIS influences these.
All allied health professionals who require CPD requirements interested in the disability space would find these materials interesting, was the view of Gordon Duff, NDS general manager for policy and research. “What we are seeing is that a lot of allied health professionals are leaving larger organisations and setting up as sole practitioners and that is what is driving most of the new registered organisations in the NDIS,” he told F2L. “These resources will be helpful for those considering the disability sector to help them to get across the issues as opposed to doing a Certificate III or Certificate IV in disability.
“Julian Trollor and his team have seen the range of people presenting to them and understand there are people bouncing around in the system without person-centred care which is often just an artefact of those fault lines in the systems between state departments which are completely at odds as to what these people need. Carers and others have been saving this forever that we need people to take a more realistic view and do the work. This is one of the few projects where it was possible to access data from mental health and disability and bring it together because previously agencies have been very protective of their data. Have this data has illuminated some of the problems which are quite shocking in terms of the health outcomes for people with disability and mental health issues,” he said.
Head of occupational therapy at the Concord Centre for Mental Health, Julie Bohan commented that while the tools and resources were excellent for carers and allied healthcare and medical professionals there were none for consumers.
“There is a page missing for consumers with a dual diagnosis of intellectual disability and mental health issues,” she told F2L. “Obviously if you have communication challenges such as listening, reading or verbally communicating, it is going to be difficult to produce these tools. It is something that would be worthwhile pursuing but I understand it is an area that needs more funding to proceed. As OTs we want resources to help not just the carers, but the consumers as well to assist them on their journey,” she said, adding that there were no options for consumers with intellectual disability and mental health to log onto these resources either.” However, when you have a patient with a range of communication problems to consider where do you start, which is where the problem probably lies in developing these tools.”
As for the NDIS, Bohan said: “we have to greatly increase our advocacy of mental health consumers as navigating the NDIS will not be without its challenges for our consumers.”
One of the speakers was Northern Sydney Local Health District manager, Barbara Lewis who emphasised the importance of carers and families being put in touch with the new resources. Lewis suggested that organisations such as Carers NSW connect carers to the new tools and also put the relevant information in brochures so carers can cross-promote. “What I hope we don’t have is inappropriate hospitalisations, which is a concern for me with the NDIS. Previously we would have picked up the phone and spoken to one of our ADHC colleagues. Support would come and we could work it out at ground level. Hopefully with NGOs having resources available we won’t have that unacceptable approach,” she said.
The event was launched by NSW Minister for Mental Health, Tanya Davies who said the resources developed by Professor Troller and his team were an important step in improving outcomes for people with co-existing disability and mental health problems. “Historically the relationship between intellectual and mental health has not been well understood,” she said. “Only recently has there been the recognition that people with intellectual disability can develop the same mental health problems as the main population. In fact, incidence rates of mental illness are higher and this is a particularly vulnerable group.” The Minister said between 20 per cent and 40 per cent of people with an intellectual disability also have a mental illness but this was likely to be an underestimate as mental illness was likely to be less diagnosed with earlier interventions and detection.
“The research team lead by Prof Trollor is making it possible for this group to access quality health services. Both intellectual disability and severe mental illness result in serious, lifelong impairment and where these two co-exist there is a significant impact on the quality of life for the person concerned, as well as for their families and carers.”
People with intellectual disability face many barriers in accessing mental health services and there is still a lot of work to be done, she said. “The end goal, and a moral and worthy one, is that it makes a significant difference, not just to the individuals affected but also their loved ones. NSW Health has worked closely with UNSW and the Council for Intellectual Disability to ensure that public health services better meet the needs of people with intellectual disability and mental health issues. Much of the ground-breaking work in this area has been led by Professor Troller and his colleagues at 3DN.
“The new resources represent a vital step forward in addressing these issues but do not represent an end in themselves. The real value is to ensure that people with an intellectual disability and their families are able to ensure the highest standard of mental health and wellbeing.