national disability insurance scheme: · web viewintellectual disability is the overriding...

National Disability Insurance Scheme:

Eligibility and reasonable and necessary supports consultation – Down Syndrome Australia responseDOWN SYNDROME AUSTRALIADown Syndrome Australia is the national voice of people with Down syndrome, their families and carers. The Down Syndrome Australia members are the eight peak State and Territory Down syndrome associations whose members are people with Down syndrome and their families.

Understanding Down syndromeDown syndrome is the single most common genetic cause of intellectual disability, with around 270 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.

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

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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.


EligibilityFocus Questions:

1. Does the description of eligibility cover all of the things that you think a National Disability Insurance Scheme would need to know about to determine whether you should be eligible to receive support under an NDIS?

Down Syndrome Australia Ltd is concerned about the draft eligibility statement, as it does not adequately encompass the needs of young children with a disability or developmental delay. It also does not clearly encompass the requirements of the significant number of people with Down syndrome who will develop early onset dementia.

Down Syndrome Australia’s answer to the first focus question thus addresses three issues: (1) the inclusion of young children; (2) understanding of developmental delay; (3) the meaning of impairment and functional capacity for young children; and (4) resourcing of ‘other systems’.

The inclusion of young childrenMuch of the focus of the definition of eligibility appears to, in the most part, overlook early childhood and children. While Down Syndrome Australia appreciate that the NDIS needs to encompass essentially all ages, there must be a recognition that the needs of young children and their families are also important and different to the needs of young people, adults, and their families and carers. There is a strong adult focus in the proposed definition.

Developmental delay, not global developmental delayOf particular concern to Down Syndrome Australia and our members is the inclusion of ‘global developmental delay’ in point 3 of the criteria.

Traditional eligibility tools such as IQ tests have significant limitations when it comes to people with Down syndrome. 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.

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. It should be noted that, while IQ scores for a small number of young children with Down syndrome indicate that they ‘technically’ do not have an intellectual disability; international & Australian


research reveals that intellectual disability is universal in the population of adults with Down syndrome.

Down Syndrome Australia believes the current definition of ‘global developmental delay’ is too narrow and has the potential to exclude some young children with Down syndrome. We recommend that it be replaced with ‘developmental delay’ that is significant and requires ongoing support. This will ensure that all children that require access to valuable early childhood intervention, who may only be experiencing a delay in some areas of development rather than the majority of areas whilst very young, will be able to do so under an NDIS.

Impairments and functional capacityIt is important when thinking about young children with a disability or developmental delay to shift the focus away from functional capacity for daily living, given that all children require functional support with daily living. Instead, the focus must be on a child’s ability to maximize their developmental opportunities and increase their participation in family and community life. Down Syndrome Australia requests that the following changes be included in the eligibility criteria under point 4 to ensure that the needs of young children and their families are adequately met by the NDIS:

Part 4b – the ability to learn and reach their optimum development. Part 4c – it is not just employment and community participation, but also

critical services such as early childhood education and care and other educational programs to be included.

Part 4e to be added that the ability of families to learn and adopt different, and more intensive, parenting strategies to promote the child’s development must be addressed.

Resourcing of ‘other systems’Part 5 of the draft eligibility statement refers to other systems. It is not clear what these ‘other system’ are and if they have capacity to handle referrals under NDIS; funding arrangements for the provision of services under NDIS; and what is the availability of these supports in rural and remote settings.

1. Are there additional questions that an NDIS should ask people before deciding if they are eligible to receive support?

When determining NDIS eligibility for young children, it is critical not to simply look


at the child in isolation from, but in the context of his or her family. It is important to examine the impact of a child’s disability or developmental delay within the family milieu, taking into account the impact on both primary carers but also siblings. The NDIS has a responsibility, as early childhood intervention now has, to support families as whole entities, as this provides the best opportunity to support children’s learning and development.

Early childhood intervention programs and services are usually best delivered by professionals in natural environments in partnership with families as an extension of existing family support. Early childhood intervention is focused on building families’ quality of life and supporting children in developing their skills and abilities to participate in and enjoy daily life.

The question 'what do you currently get in terms of service provision?' should also be asked. This creates the opportunity to fully map services currently received as well as unmet need. It is critical that people with disability do not receive less than they currently do under the present system once they transfer to NDIS.

Reasonable and necessary supportFocus Questions:

1. Are there supports that you think are important to include in an NDIS that would be excluded by this description?

Supports for children appear to be excluded from the description. Many of the supports that children require are outside the scope of many of the reasonable and necessary support criteria that have been outlined.

Early childhood intervention can provide learning opportunities and developmental programming; routines based interventions, support for inclusion, family support, service planning and coordination, assistance and support to access services such as kindergarten and childcare. Services are tailored to meet the individual needs of the child and their family and are focused on supporting the child in their natural environments and in their everyday experiences and activities.

These components of support need to be reflected in the criteria for reasonable and necessary support. This could be done through adding in reference to: the importance of maximizing children’s development; supporting their capacity to engage in play and developmental tasks; enhancing their inclusion in mainstream services; and, providing families with the opportunity to support both their child’s developmental opportunities. These supports need to be explicitly accounted for in the NDIS description of reasonable and necessary support for young children with developmental delays or disabilities.


1. Are there additional points that are needed to make sure that the support provided under an NDIS meets the reasonable and necessary support needs of people with a disability?

a. Achieving goals and maximizing independenceThe rising life expectancy of people with Down syndrome has 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 supports provided to them.

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 each person’s aspirations inform 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.

b. ParticipationA key area of supports that is essential to include in the NDIS for people with Down syndrome and their families is that of advocacy, self-advocacy, mentoring and leadership. Traditionally, there has been little funding available for advocacy support, yet this will be crucial to achieving real choice and control over one’s funding and supports for people with Down syndrome. The grassroots organisations supporting people with Down syndrome and their families have provided advocacy and leadership support for over 30 years with little or no government funding for this area. We anticipate that the need for this type of support will grow and that the role of our state and territory organisations will increase under the NDIS, so this must be recognized and supported by government as a reasonable and very necessary area of support for individuals with Down syndrome and for their families when acting as advocates for their sons and daughters of all ages.

c. Effective & evidence informedIt is important to acknowledge that when thinking about an individualised funding approach with very young children it may be more appropriate to look at the family as the ‘individual’, rather than just the child as the individual.

Being new to a system that is often difficult to navigate, with a young child with a disability or developmental delay, families find themselves in a disadvantaged position to judge what kind of support they or their children need, and solely


engage in the type of decision making required to select the services that may be most appropriate for their children. There is ample evidence to suggest that expecting families to do so only makes their situation more stressful. One of the aims of Down syndrome support organisations during the early years is to help build the knowledge, confidence and capacity among families so that they are in a position to make better choices on behalf of their children and themselves when the children are older. This is also a fundamental role of Down syndrome support organisations across Australia, through valuable peer support programs and the facilitation of family networks.

Individualised funding must include the ability to buy services that build the family’s capacity to promote their children’s learning and development. A service-oriented approach is contrary to best practice.

The recent Commonwealth funding model of Better Start, which has individual focus, resulted in a move by providers to models that are contrary to best practice. Families reported moves away from group and peer sessions to individual therapy sessions. Other family capacity building requirements could also not be met within the Better Start framework.

In addition, there appears to be a conflict of philosophy in relation to the NDIS. From Down Syndrome Australia’s perspective there needs to be a strong focus on the importance of participation in universal services for children and adults with Down syndrome, such as early childhood education and care, education and health care. If Government pegs back universality then we will see a move towards a more segregated rather than inclusive system.

Down Syndrome Australia would like to reinforce that the importance of high quality and tested evidence cannot be underestimated, particularly given the move towards more individualised funding approaches. The NDIS needs to communicate best practice, so that when people are making choices about the types of services they wish to use in a user pays environment, they are informed by the evidence.

Information on best practice must be provided within the natural pathways taken by families. Best practice information provision also emphasizes the context and tone of information delivery. Lived experience informs best practice information provision which must not be outsourced to other ‘experts’.

Communicating best practice has been a challenge in the Better Start model as many parents of young children pursue a more traditional ‘therapy model’ even though this may not be current best practice. This is because the evidence has not been broadly communicated and translated in meaningful ways. This must occur if consumers and the community are to be empowered.


Down Syndrome Australia also believes that individuals with Down syndrome and their families must be able to use their funds to buy services, supports and equipment that are generic if that is what suits their needs best. Traditionally, disability services providers have been seen as the only ones that can provide ‘appropriate’ supports to people with disability and their families; however individuals and families will tell you that there are generic solutions to their support needs that are less restrictive, less intrusive and more cost-effective than those provided by specialized providers. For example, the use of automated household equipment such as a dishwasher or robot vacuum cleaner is much preferred to a support worker or home help coming into the family home to carry out these tasks for a person with Down syndrome or primary carer who needs help in these areas. Another example relates to equipment; traditionally, people with intellectual disability have not qualified for funding for equipment to assist their learning or communication, because the equipment needed such as ordinary computers, and now iPads, was not disability specific. This has changed with Better Start. Down Syndrome Australia considers that this policy change must be maintained within the NDIS to ensure real choice and access to technology and other equipment that best meets people’s learning and communication needs. Down syndrome associations in all States and Territories focus on supporting children and adults in the family context via a model of peer support and empowerment to build resilience in people with Down syndrome and their families. Current research on resilience suggests that despite the very real demands of life with a child with a disability, most families can and do make the adjustment and incorporate the additional needs of their child with Down syndrome into their daily lives.

International research also highlights the important role peer support can play in this adjustment process. This confirms our own anecdotal evidence, which suggests that the opportunity to share the load with others on the same journey contributes to the health and wellbeing of families, helping them to not only make the adjustment but also ensure continued successful functioning. We believe peer support is particularly important during difficult transition periods such as the birth of a baby, and to and from school.

d. Value for moneyOne of the areas of the description that remains unclear are the factors to consider when defining reasonable and necessary supports, in particularly the emphasis on value for money and what pricing structures will be used to determine value. As noted in (c), above, allowing individuals with Down syndrome and their families to choose from generic services and supports will often provide the best value for money.

e. Community expectations


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 sister123.

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. Sometimes, this may challenge community expectations about what constitutes a reasonable response to the family’s needs. For example, some families may need a break but be reluctant to put their loved one with Down syndrome into a respite facility or have them cared for at home while the primary carer and/or family goes away from home for a break. These families may understand respite as the whole family, including the person with Down syndrome, getting away from home and their daily routine together. This may not tally with ‘community expectations’ but the wisdom and experience and wishes of families should be respected and supported.

f. Best provided by an NDISThe 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 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. Perth, WA: Telethon Institute for Child Health Research, 2007.3 Povee K. Family functioning in Families with a Child with Down Syndrome: A Mixed methods Approach. Honours Thesis: Curtin University; 2010.4 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):320-6.


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. Studies5 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.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 years6

The current interaction between disability and aged care systems for people with Down syndrome and Alzheimer’s disease is extraordinarily poor.

It should also be noted that many of the health concerns that people with Down syndrome can be prone to are also likely to exacerbate as they age, so the NDIS must recognise and support their changing needs throughout life.

2. Does this description of reasonable and necessary supports, combined with the eligibility statement, help you to understand who will be supported in an NDIS and what supports might be provided to them? If not, how do you suggest that the description be made clearer?

Down syndrome associations in all States and Territories focus on supporting children and adults in the family context via a model of peer support and empowerment to build resilience in people with Down syndrome and their families. Current research on resilience suggests that despite the very real demands of life with a child with a disability, most families can and do make the adjustment and incorporate the additional needs of their child with Down syndrome into their daily lives.

International research also highlights the important role peer support can play in this adjustment process. This confirms our own anecdotal evidence, which suggests that the opportunity to share the load with others on the same journey contributes to the health and wellbeing of families, helping them to not only make the adjustment but also ensure continued successful functioning. We believe peer 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.

6 Down syndrome Australia Network, Alzheimer’s Australia, CDDH Victoria: Down Syndrome and Alzheimer’s disease.


support is particularly important during difficult transition periods such as the birth of a baby, and to and from school.

The description of reasonable and necessary supports does not make it clear if this important work will be appropriately funded under an NDIS.

As previously highlighted in this submission, it is unclear whether early childhood intervention services, along with other services for young children with a disability or developmental delay, are included in the NDIS. In a nutshell, it is vital that services that focus on children’s learning and development, along with family support, are not just seen as the domain of health and education which run the risk of focusing on silo type delivery of services.

In conclusion, there are some other things that need to be considered when thinking about defining eligibility and reasonable and necessary supports. Clear communication on reasonable and necessary supports must go hand in hand with the need for a service system that is easy for consumers and professionals to navigate. It is vital that individuals with Down syndrome and their families consumers, the community, service providers, peak bodies and others continue to be engaged in critical discussions regarding the NDIS. From our perspective families are at the core of helping their sons and daughters with Down syndrome achieve independence, live a life of their choice and make their contribution to the community. It is essential that the NDIS supports their vital role while also enabling and supporting people with Down syndrome to self-advocate and achieve their potential.

Down Syndrome Australia

28 September 2012

Contact:Catherine McAlpine CEO Down Syndrome Australia 0419 530 524Jackie Softly Down Syndrome Australia Board 0417 850 717

Down Syndrome Australia has used some material from the ECIA (Vic) response to the Eligibility and Reasonable and Necessary Supports consultation and broadly supports the ECIA (Vic) submission.


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