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DSA Submission
Autism Consultation
May 2021
About Down Syndrome Australia
Down Syndrome Australia was established in 2011 as the peak body for people with Down syndrome in Australia. Our purpose is to influence social and policy change and provide a national profile and voice for people living with Down syndrome. Our vision is an Australia where people living with Down syndrome are valued, reach their potential and enjoy social and economic inclusion.
Down Syndrome Australia is making this submission on behalf of its members. Down Syndrome Australia and its members work together to provide support for people with Down syndrome and to make Australian society inclusive for people with Down syndrome. We work in partnership to maximise the opportunities and support for people with Down syndrome and their families and support networks.
Down syndrome is a genetic condition in which the person has an extra copy of some or all of chromosome 21. This additional chromosome results in a number of physical and developmental characteristics and some level of intellectual disability. There are more than 15,000 Australians who have Down syndrome and approximately 1 in every 1,100 babies in Australia are born with Down syndrome.1
For more information contact:
Dr Ellen Skladzien
Chief Executive Officer
Down Syndrome Australia
Email: Ellen.skladzien@downsyndrome.org.au
Website: www.downsyndrome.org.au
1 Down Syndrome Australia (2020). Down Syndrome Population Statistics. Retrieved from https://www.downsyndrome.org.au/about-down syndrome/statistics/ 2
Submission: Autism Consultation
Down Syndrome Australia (DSA) welcomes the opportunity to provide a submission to the National Disability Insurance Agency on the Autism Consultation.
As outlined by the discussion paper, the NDIA is developing advice for participants, their families and providers regarding reasonable and necessary funding of early childhood intervention supports for children on the autism spectrum.
People with Down syndrome can also be autistic. Research suggests that people with Down syndrome are more likely to have autism compared to other people in the community. Prevalence estimates range between 1-19% of people with Down syndrome are also autistic.
“It needs to be very clear that the needs of people with Down syndrome and autism are different than people with just Down syndrome or just Autism. They need different supports. These differences are not always captured by the questions asked in an assessment. You need to look at how these issues interact and how to support people holistically. It has to be seen as a separate thing but also something that has a multiplier impact. The supports you do early on have an impact on how independent the person can be in the future.”
- Mum of adult with Down syndrome and Autism A note on language Many autistic people have a preference for identity-first language (ie an autistic person) as opposed to person-first language (ie a person with autism).
Many people with Down syndrome have a preference for person-first language (ie a person with Down syndrome) as opposed to identity-first language (ie a Down syndrome person).
While every person and family will have individual preferences, the language used in this submission reflects these more commonly held positions.
Promoting best practice – autism and Down syndrome The autism consultation paper has not recognised the specific needs of autistic people who may also have another disability such as Down syndrome. It is essential that the guidelines developed from this consultation acknowledge that autistic children can have other disabilities that can impact their needs for support. Often autism may be identified later when there are other co-occurring diagnoses. This may mean that higher level supports are required at a later age than for children who have a sole diagnosis of autism.
“It is almost like two separate things but each one makes the other thing more difficult. I’ll give you an example. During the pandemic, his hands became overly dry and split from handwashing. At first, we thought it might be a sensitivity to the soap he was using. Finally, we found out he was washing his hands all the time. That’s not 3
really about Down syndrome it was more about his autism. But his understanding of Covid and how to explain what was going on was related to his intellectual disability. So how he reacted to Covid was affected both by his autism but also his intellectual disability.”
- Mum of adult with Down syndrome and Autism Parents have reported not feeling heard by their medical or allied health team when they raise the possibility that their child with Down syndrome may be autistic. The term ‘diagnostic overshadowing’ refers to the situation where all behaviours or challenges are considered to be linked to the original diagnosis, for example Down syndrome, without fully exploring other possibilities. It is thought that diagnostic overshadowing contributes to the much later age at which many young people with Down syndrome are diagnosed.
The value and importance of peer-support should be recognised in the provision of autism interventions. For example, Down Syndrome Australia, in conjunction with State and Territory Down syndrome organisations, is uniquely positioned to support the cohort of autistic people who have Down syndrome and their families. State and Territory Down syndrome organisations can connect people with a co occurring diagnosis of autism and Down syndrome and their families with supports that are relevant to their unique needs. This includes the opportunity to establish social connections through a range of online and in-person forums and activities. Information sessions on a range of topics are regularly run – an example relevant to this submission is a recent webinar about the co-occurrence of autism and Down syndrome, a collaborative project between the Autism Centre of Excellence at Griffith University and Down Syndrome Queensland.
Reasonable and necessary Down Syndrome Australia is in general agreement with the seven key principles for autism interventions and the standards for the delivery of autism interventions. Down syndrome Australia is committed to the use of evidence-based interventions as outlined in proposed Principle 5 however the flexibility to apply a common-sense approach to potential interventions where an evidence base has not yet been established must be made clear. It is important that the Scheme recognises that just because evidence has not yet been established, or the benefit is difficult to measure in relation to a particular intervention, this does not mean there is no benefit from the intervention.
Autistic people and their families must be understood as experts in their own circumstances. Their testimonies in relation to intervention efficacy need to be given due weight. In seeking to understand and summarise the evidence base for interventions for autistic children, the CRC report Interventions for children on the autism spectrum: A synthesis of research evidence found significant gaps in available evidence. Of particular note, the report found ‘insufficient research evidence to understand the effect of interventions at the individual level (i.e., which interventions have a positive effect on which outcomes, for which children)’. It is imperative that the well-intentioned desire to utilise interventions where a clear evidence base exists does not prevent participant access to innovative interventions that meet their unique needs.
The narrative in relation to the proposed Standard 3: The intervention provides significant benefits should be clarified to recognise that some benefits may be difficult to measure or observe. The significance of listening to children and their families about what makes a difference for them is particularly important in
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the context of the limitations in the evidence identified in the CRC report described above. While a range of evidence abounds, we must not forget that children and their families are experts in their own lives and what is most likely to make a difference for them. Respecting their expertise, in conjunction with available research evidence, is a step towards enabling genuine choice and control.
Down Syndrome Australia has concerns about the practical applicability of the indicative level of funded support outlined in the consultation paper. Autistic people have a wide range of life circumstances and often have co-occurring disabilities. The specific funding bands outlined do not reflect this more nuanced reality. We are also concerned about the assumption that the funding levels will reduce once a child enters school. It is suggested that this reflects “children having developed new skills, having gained experience from inclusion, spending less hours in the home”. There needs to be understanding that capacity building is not something that necessarily just happens over a short period of time but can be a process of building skills and implementing strategies over a long period.
Many children will have additional support needs as they enter formal schooling and require support with this transition. In addition, as previously discussed, some children may not receive a formal diagnosis until they enter the school system. Down Syndrome Australia members report that mainstream systems are not supporting or including students with disability well. In some cases, mainstream schools impose reduced hours of attendance - but the Scheme does not fund additional support - and the proposed funding framework presumes a gradual decrease in funding linked to the child reaching school. This assumption does not reflect the reality of the needs of many people and their families and in particular the cohort of autistic young people with Down syndrome. Down Syndrome Australia members who have autistic children with Down syndrome have often been receiving therapeutic supports for years.
Delayed diagnosis – rarely met with an increased level of funding - together with a lack of effective therapy options and experienced therapists who can support the complexities presented means these families are often in crisis. Having to work against an assumption that supports should begin tapering off adds to their distress and limits their ability to care for and support their child.
“They want us to have a few years of speech therapy and think that he doesn’t need it any more. But that is not how it works. The NDIS said he could do a weekly speech session for a year, and then monthly for a year and then he wouldn’t need therapy anymore. They think they will fix him. His needs are so great that he could benefit from speech therapy for a much longer time. It’s not just the articulation that he needs support- but it is also about communication. That need does not go away. This idea that funding decreases over time because someone is ‘fixed’ is a real shame. The things that he is working on- the things he is starting to achieve won’t happen any more. He will regress. His quality of life with the speech therapy is clearly going to be better than without. It is going to increase his ability to communicate. J is going to have limitations in speech forever- but the therapy is about ways of enhancing what he has got to make his life better. There is no way that in 2 years’ time he is not going to benefit from it anymore.”
- Mum of adult with Down syndrome and autism 5
The Scheme has a significant role to play, together with the education department, in enabling participants to have a positive, inclusive school experience. The siloed approach to provision of supports for children at school can be confusing for all involved and ultimately unhelpful in ensuring young learners are set up for success. The Scheme should aim for greater collaboration with the department of education and clarity in relation to funded education supports. It should not fall to overwhelmed families to navigate this divide.
The Transitioning to High School case study presented in the consultation paper provides a good example of the Scheme clearly ruling out a specific support requested by the family to reach identified goals (successful school transition, reducing anxiety, making friends, developing social skills) and in another area stating that some support would be provided without articulating the nature of this support. The case study outlines a decision not to fund a support worker for Aron however notes in relation to the request relating to his anxiety ‘The NDIS can fund supports to help build Aron’s self-confidence and communication skills to help him reach his goals of making friends and developing his social skills.’ The case study remains vague about the exact nature of the supports that would be approved by the Scheme.
Based on the information provided in this case study the obvious option would be the provision of a support worker who is able to provide some scaffolding to build Aron’s social skills development and lay the foundations for a successful High School career. This would be in keeping with Principle 7: The intervention supports participation in mainstream and community. Accessing support and a care plan through his general practitioner as suggested would not offer Aron the tailored support he requires in a natural setting. Having to leave school to attend appointments would work against efforts towards inclusion and separate him from his peers.
Supporting parents and carers to exercise choice and control There is insufficient consideration given to the need for support for parents as they advocate for and implement a plan that meets their child’s needs. The consultation paper raises concerns about equity within the Scheme noting that participants living in higher socio-economic areas receive higher budgets on average. This does not necessarily mean that people are receiving more supports than they require, but perhaps that this group has better access to resources and is better able to articulate their support needs. There is also a significant difference across socio-economic status in plan utilisation, which suggests that families with a lower socio-economic status may have difficulty implementing the funds they receive.
Rather than trying to artificially control costs through the use of funding bands, the NDIA should consider how they can better support individuals from lower socio-economic areas to articulate their support needs and utilise their funding, including through the provision of support coordination or additional core supports. For example, in some cases families are not being provided with core supports, or adequate core supports, and subsequently cannot engage in capacity building as they remain overwhelmed and unable to move past a crisis response. Down Syndrome Australia notes that this paper focuses solely on capacity building funding, it is however important to acknowledge the interplay between core and capacity building funding.
Independent assessments Down Syndrome Australia has joined with advocacy efforts led by Every Australian Counts in relation to the introduction of Independent Assessments. We welcome the announcement from Minister Reynolds
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that plans to introduce independent assessments will be paused and appreciate the renewed focus on consultation.
Contracted compulsory assessments will be unable to capture the complex and nuanced needs and goals of people with disability such as the many young people with co-occurring disabilities including autism and Down syndrome. Down Syndrome Australia looks forward to being part a genuine consultation and co design process aimed at the delivery of a fair and equitable Scheme.
The proposed changes are the most fundamental changes to the Scheme since its inception. We are concerned that there is not sufficient evidence to suggest that this new approach will lead to a fairer and more equitable Scheme. There are a range of other approaches which could have been considered to deal with concerns regarding consistency and equity such as allowing individuals health professionals to complete specific structured assessments. We are also concerned that the assessments and new planning approach may lead to participants not being able to access the level of supports that they require to meet their goals.
Down Syndrome Australia is seriously concerned that there is no publicly available information about how the assessments will be used to determine plan amounts. The autism consultation paper is the first to provide any detail about on how the independent assessments will be linked to specific funding levels. The approach described in this paper is concerning as it does not consider individual circumstances and makes broad assumptions about the impact of entering schooling. Linking independent assessments to funding levels is a critical component of the new reform however there has been no testing or consultation within the sector. There needs to be adequate time for the NDIA to test this new approach and to work with the sector to ensure that the proposed algorithm will provide sufficient funding for participants.
Conclusion
Down Syndrome Australia has concerns that the Autism consultation paper has not considered the additional support needs of individuals who have autism and other co-occurring disabilities. In addition, we are concerned about the proposed funding bands, including the presumption that support needs decline once a child enters school. We also remain concerned about the use of independent assessments to determine the level of supports that people with disability require. This approach is particularly problematic in early intervention when critical early supports can be missed because of a lack of investment. We urge the Government to reconsider this approach and to provide the Early Childhood Early Intervention partners with greater discretion in determining appropriate funding levels based not only on a single functional assessment but also on the range of other factors that impact on need for early intervention supports.
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