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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.
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.
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 research4. 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.
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):216-29.
2 Dyke P, Leonard H, Bourke J, Bebbington A, Bower C. Down Syndrome needs Opinions Wishes Study report.
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.
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...."
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.
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.
2 March 2012
Contact:
6Down syndrome Australia Network, Alzheimer’s Australia, CDDH Victoria: Down Syndrome and Alzheimer’s
disease.