The Australian Government via Dyson Consulting Group on. Key Considerations regarding the assessment of people with Down syndrome and their families:

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1 DOWN SYNDROME AUSTRALIA Submission to The Australian Government via Dyson Consulting Group on NDIS ASSESSMENT TOOLS Down Syndrome Australia is the national voice of people with Down syndrome, their families and carers, and as such, we submit the following information to be taken into account during the development of the NDIS assessment tools. Please note that this submission has been developed in haste as we received notice of the opportunity just two working days ahead of the closing date, and the short time for responses and our lack of resources prevents a more comprehensive initial submission. We wish to engage more fully with the development of the tools and indeed any further NDIS development and would appreciate the opportunity to do so as the only national organisation speaking solely on behalf of the Down syndrome community. Key Considerations regarding the assessment of people with Down syndrome and their families: Assessments to be person-centred Until now, assessments for funding and services have always been deficit-based, that is, based on what the person can t do. This leads to a welfare type of payment at subsistence level. The essence of the NDIS is to ensure that people with disabilities and their families/carers are adequately funded, as an entitlement, so that they can live to their potential, choose the kind of life they want to live and enable them to contribute to the community. In order to do this, it is essential that assessments are based on each person s aspirations and the support they will need to work towards achieving them. This means involving and supporting the person and their family/carers as appropriate in planning and identifying the supports they need. It also means being person-centred and flexible regarding what can be funded. This is a process, and must not be done in one assessment session in an unfamiliar place with unfamiliar assessors. There will need to be supports that people can access to help them plan for the assessment; perhaps people trained to assist; documents/tools that people can use to draft their own basic plan in preparation for the assessment process, and so on. In the UK, individuals have the opportunity to conduct a self-assessment and develop a plan, which is then taken into account by the assessors for individual budgets. This may be one option to explore. Prepared by J. Softly for Down Syndrome Australia Page 1 of 5

2 The role of family/carers to be respected supported Family/carers of people with Down syndrome play a critical role in ensuring their loved one gets the best outcomes possible in all life situations. This is not an easy role and demands strong advocacy, patience, persistence and energy and often results in significant changes to the family s lifestyle due to these demands. All too easily, the roles of advocate and carer can take over from those of mother, father, brother and sister 123. Family income can be reduced if one parent is not working or is working part-time due to the caring role. This is an issue through life due to early intervention commitments, the need to be available during school days for some families, after school when the young person has no employment or other day activity and to support the ageing person with Down syndrome. The toll on the health, particularly the mental health, of primary caregivers of people with Down syndrome is well documented in research 4. Families need to be recognised by the NDIS and be supported to carry out their role and to be able to have breaks to sustain them. The NDIS should not be constrained by traditional models of support and respite but accept each family s expertise when they say what will help their loved one and what will help them in their role. Understanding Down syndrome Down syndrome is the single most common genetic cause of intellectual disability, with around 260 babies born in Australia each year. However, Down syndrome also brings with it a wide range of health concerns and delays in physical and communication development. It is absolutely vital that any assessment tool and the people using it have a thorough understanding of the impact of all of the features that make up the syndrome. Some examples: 45% of all babies born with Down syndrome have a congenital heart defect; close to half have ongoing bowel issues; 56% have an ongoing hearing problem, and this is higher in the school years; almost 60% have ongoing vision problems and there are a number of significant, sometimes life-threatening conditions to which people with Down syndrome are more prone, due to reduced immune function, for example thyroid conditions, arthritis and leukaemia. Fatigue is an issue for most individuals with Down syndrome. This may be due to some of the conditions listed here, but also results from the hypotonic muscles of people with Down syndrome. This simply means they need to exert a lot more effort in everything they do, and so need more down time than others. 1 Mulroy.S, Robertson L, Alberti K, Leonard H, Bower C. The impact of having a sibling with an intellectual disability; parental perspectives in two disorders. Journal of Intellectual Disability research. 2008;52 (Pt 3): Dyke P, Leonard H, Bourke J, Bebbington A, Bower C. Down Syndrome needs Opinions Wishes Study report. Perth, WA: Telethon Institute for Child Health Research, Povee K. Family functioning in Families with a Child with Down Syndrome: A Mixed methods Approach. Honours Thesis: Curtin University; Bourke J, Ricciardo B, Bebbington A, Alberti K, Jacoby P, Dyke P et al. Physical and mental health in mothers of children with Down syndrome. The Journal of Pediatrics. 2008;153 (3): Prepared by J. Softly for Down Syndrome Australia Page 2 of 5

3 Dual diagnosis The incidence of other co-morbid conditions in people with Down syndrome is not uncommon; indeed, having Down syndrome may predispose people to other disabling conditions. For example, it is estimated that around 7% of individuals with Down syndrome are also on the Autism spectrum. This results in higher support needs regarding behaviour, communication, education and ongoing higher levels of support throughout life. A number of studies have recognised significant levels of mental illness in people with Down syndrome, especially depression and dementia and the National Down Syndrome Society in the US states that almost half of individuals with Down syndrome will have a mental health issue in their lifetime. People with Down syndrome are unique individuals While the syndrome brings a range of common issues, these will not all be present in every individual. Rather, each person with Down syndrome will have a different package of health concerns and developmental issues and be somewhere on a very wide spectrum of intellectual disability. One size does not fit all. Impact of intellectual disability Intellectual disability is the overriding feature of Down syndrome that changes a person s life experiences and requires the greatest amount of lifelong supports, throughout all aspects of the person s life. While some people with Down syndrome may be said to have a mild intellectual disability, there are few if any individuals who don t need some support. Most will need significant supports throughout life. Short-term memory in people with Down syndrome is greatly affected, resulting in a significant impact on executive function. Processing of information is much harder, therefore much slower than in the general population. This makes it difficult for people with Down syndrome in everyday situations, where the rest of society is operating at a very fast pace. In addition to the day-to-day difficulties caused by this, it is vital that the assessors understand the need to be patient, and wait for responses a little longer, when conversing with the person with Down syndrome. Also, to understand that the range of speech capability is very broad, due to intellectual disability and some anatomical differences, so an understanding of each individual s communication modes is vital. People with Down syndrome can have high levels of anxiety in unfamiliar and new situations. This can hinder their participation in everyday life, but may also be a factor during assessments. People with Down syndrome frequently have good adaptive behaviour in familiar settings, which actually belies their level of intellectual disability. While this can be an asset in social situations, it can mask their actual level of ability in assessments, so this must be taken into account. Prepared by J. Softly for Down Syndrome Australia Page 3 of 5

4 Specifically, the fact that people with Down syndrome usually have good social skills means assessments must be more thorough, more detailed and take account of adaptive behaviors in a range of circumstances. Traditional assessment tools such as IQ tests have significant limitations when it comes to people with Down syndrome; therefore it is of paramount importance that adaptive behaviors are taken into account in a range of circumstances and situations. We would hope the NDIS assessment process is more thorough and uses a toolkit rather than relying on one or two approaches as well as taking serious account of the information provided by people who know them best - their families - rather than just the token "her mother reports..." Changing needs through life That there will be a need for different supports and therefore different levels of funding as a person moves through life is self-evident; however it is important that the NDIS assessment tool understands the unique changing needs of people with Down syndrome, and that it must be made easy for people to access the system as their needs change. The spectrum of intellectual disability is very broad in Down syndrome and has an impact on the individual and their family as they move through life stages. Early intervention from birth, individualised support through the school years, support for a successful transition to adult life and ongoing support for employment, housing and true inclusion in the community will all be needed in order for a person to live a life of their choosing and be a valued contributor to the community. The life expectancy of people with Down syndrome has doubled in the last three decades. Advances in medical and social science research have completely altered the quality of life and health enjoyed by people with Down syndrome. The majority of individuals with Down syndrome can today enjoy a long and healthy life with longevity in many cases approaching that in the general population. However, increasing life expectancy also brings the challenges of Alzheimer s disease. Alzheimer s disease is the most common cause of dementia, both in the general population and in people with Down syndrome. It occurs more frequently and at a younger age in people with Down syndrome than in the general population because of a complex connection between chromosome 21 (of which people with Down syndrome have three copies instead of two) and Alzheimer's disease. The relationship between Down syndrome and Alzheimer's disease is complex. Studies 5 have shown that by the age of 40, almost all people with Down syndrome have evidence of the brain changes characteristic of Alzheimer's disease. This does not mean that everyone with Down syndrome will develop symptoms of the dementia of Alzheimer s disease. 5 Carling-Jenkins R, Torr J, Iacono T, Bigby C. Alzheimer s Disease in People with Down Syndrome: Developing a Model of Care. Centre for Developmental Disability Health Victoria. Prepared by J. Softly for Down Syndrome Australia Page 4 of 5

5 Although the brain changes associated with Alzheimer's disease are seen in people with Down syndrome by around 40 years, onset of the disease is not inevitable. Current research studies suggest that only about 50 percent of people with Down syndrome will develop clinical symptoms of Alzheimer s disease by the age of 60 years, and the average age of diagnosis in people with Down syndrome is reported to be at around 55 years 6 There are a number of other significant health issues to which people with Down syndrome are more prone as they age, which must be taken into account during assessments for NDIS support. The rising life expectancy has also brought about a new situation; that of people with Down syndrome outliving their parents. This is now the norm, so the imperative for people with Down syndrome to be supported to greater independence and participation is crucial, and needs to be a key feature of the assessment process. Down Syndrome Australia 2 March 2012 Contact: Catherine McAlpine CEO Down Syndrome Australia Jackie Softly Down Syndrome Australia Board Down syndrome Australia Network, Alzheimer s Australia, CDDH Victoria: Down Syndrome and Alzheimer s disease. Prepared by J. Softly for Down Syndrome Australia Page 5 of 5

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