Autism families reveal 9 improvements they need in disability funding and services

Findings come as autism parents fear new NDIS assessment criteria could restrict their child’s needs and access to funding

 

There are currently 353,880 people with autism spectrum disorder (ASD) in Australia – a 40 per cent increase since 2014.[1] With the prevalence of the condition growing in our population, a leading autism information and education service has revealed nine improvements in funding and services that autism families say they need for their children. This includes shorter wait times, simpler processes and a better understanding of their autistic children’s needs.

 

A qualitative survey of 53 Australian parents who have one or more children with autism was commissioned by leading online community resource for autism parents, AutisMag (autismag.org), which runs the parent-driven intervention and NDIS registered Autism 360 program. Respondents were asked to detail what systems and services they would like to see improved in the current NDIS process and among approved service providers.

 

CEO of Founder of AutisMag Ash Bhattacharya believes such systems could be falling short on grasping the needs of families with autistic children, resulting in increased frustration. “Our survey suggests that autism families – who represent approximately 30 per cent of people on the NDIS – are not receiving consistent, adequately effective and high-quality services.”

 

The National Disability Insurance Agency (NDIA) recently announced the addition of new independent assessments to the application process, designed to determine a person’s NDIS eligibility and level of funding.[2] However, Ash is concerned these assessments could overwhelm families even more.

 

“The independent assessments are conducted by a panel of private providers such as psychologists, occupational therapists, physiotherapists, and speech pathologists – but not the person’s usual therapist. While using standardised assessments may eliminate bias, for children with autism, this ‘one-size-fits-all’ approach could be particularly disadvantageous because every child is unique in their needs and abilities. For instance, assessing a child’s needs during a two-to-four-hour evaluation process that does not involve the child’s paediatrician or care provider is inadequate, and could fall on the parent’s ability to advocate their child’s needs.”

 

AutisMag reveals the top 9 improvements Australian autism parents say they need in disability funding and autism services:

1. A simpler and easy-to-navigate system. Many people have reported being confused and unsure if they are eligible for disability funding via the NDIS. A key issue for this is the terms defining who is eligible – for many, these terms are vague, complex and restrictive. For instance, several survey respondents cited more clarity in the application process and criteria is needed.
2. Decreased waiting times for therapy sessions. In many parts of the country, there are significant waiting lists for even the most common support services, such as occupational therapy. One respondent reported these waitlists are “incredibly long”. Another revealed the wait time for a child psychologist was a minimum of two years.
3. More control of the prices NDIS providers are charging. There is a growing trend among providers to charge the maximum permissible hourly rate irrespective of their ability and skills, making it difficult for families to compare prices based on the quality of the provider. Several respondents admit they fear NDIS providers are taking advantages of the system by putting up fees for therapy services – when they were cheaper before they joined the NDIS.
4. Ability to use NDIS funding more flexibly and for a broader range of services. With funds locked into categories of support services, it has not been easy for people to use their funding flexibly. For many respondents, flexibility in how they use their funds would make a big difference. For instance, one respondent stated they would like to use their funding for activities that improve their child’s gross and fine motor skills, such as swimming or gymnastics, rather than only putting them towards occupational or speech therapy.
5. Increased engagement and collaboration from NDIA planners. An NDIA Planner will help a family determine the services they require. However, respondents reported that planners often have limited knowledge, training and experience in disability services, with many saying they were unaware autism is a lifelong condition and cannot be ‘cured.’ For instance, one respondent worriedly admitted a planner questioned whether her son actually had Level 2 autism because he attends a mainstream school. Ash says: “This type of response reveals planners need a deeper understanding of people’s life circumstances and autism in general, to help them build a relationship of trust with the families they work with.”
6. More education and expertise among NDIS service providers regarding autistic people’s needs. A significant number of respondents revealed some service providers do not have a sufficient understanding of their needs. One respondent said: “It takes time and money to find [an organisation] that understands the needs of the child.” Another revealed that the current focus of a lot of therapies is to “fix my child,” when that is not the right approach.
7. Greater accessibility to services in rural and regional settings. Many regional and rural areas tend to be low in approved NDIS service providers.[3] A handful of respondents identified that rural or remote service offerings are scarce, particularly for those with complex autism needs. Digitally run programs, such as Autism 360, are bridging the ‘gap’ in delivery services in such settings as families that partake in them are not restricted by geography. Ash says: “The benefit of Autism 360 is that parents could be based in regional, rural or remote Australia and still have access to highly-experienced therapists.”
8. NDIS needs to include a greater number of respite care and counselling services for parents in its approved provider list. Parents of autistic children must have a sound support system in place, to help them learn how to manage the challenges of raising a child with ASD. Autism 360 provides parents with much-needed support by matching them with a specialised autism coach and a ‘buddy’ – another parent who has a child on the spectrum – to enable them to share experiences, ideas and perspectives. Ash says: “Autism 360 is a newly approved NDIS provider that has a strong support system in place for autism parents – which we believe is the way of the future for caring for children with autism.”
9. Consistency in case workers. Concerningly, many respondents reported they were interacting with new case workers quite often – whereas their children require familiarity and consistency with the case worker assigned to them. Ash says: “Routine is particularly important for a child with ASD and their parents as it will relieve stress and create a more efficient learning environment.”