NDIA Accountability Project

FamilyCare submission on services for people with autism spectrum disorder

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Submission No 65

INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM DISORDER

Organisation: Family Care

Date Received: 18 April 2016

Submission S065 Received 18/04/2016 Family and Community Development Committee

Submission to the Family and Community Development Committee Inquiry into Services for people with Autism Spectrum Disorder

18 April 2016

Contact: Karen Goodger
Practice Manager
Disability Support Services

Phone: (03)5827 7000
redacted

About FamilyCare

FamilyCare is a Community-based, regional, not-for-profit organisation offering welfare, carer and disability support services to families and people living in the local government areas of Moira, Mitchell, Strathbogie, Murrindindi and Greater Shepparton.

FamilyCare has been providing services to people in the Goulburn Valley since 1984. We work with individuals and families to increase well-being, build strengths and encourage optimism.

FamilyCare Disability Support Services provide information, support and respite to families of children or young people aged between birth and 25 years, with a disability.

A wide variety of therapeutic programs and social activities are offered. These programs aim to assist children and young people with disabilities fo develop skills and to access alll aspects of their local community.

1. Introduction

Autism Spectrum Disorder (ASD) refers to a group of developmental disabilities characterised by impairments in social interaction and communication. Impacts include restricted, repetitive, and stereotyped patterns of behaviour, which are typically apparent before the age of three years. The complex nature of these disorders, coupled with a lack of consistency in the application of diagnostic markers and changes in clinical definitions over time, creates challenges in monitoring the prevalence of ASD.1

The 2012 Survey of Disability, Ageing and Carers (SDAC) indicated an estimated 115,400 Australians (0.5%) had autism. This represented a 79% increase on the 64,400 people estimated to have the condition in 2009 (Autism in Australia, 2012: ABS 2012).2

The number of children diagnosed with autism has grown at a faster rate than the general population. In the 1980s and 1990s, approximately one in every 2,000 children had autism.3 Today that estimate has increased to one in every 100 children.4

For approximately 30 years FamilyCare has operated Disability Support Services across the west Hume region of Victoria, providing a range of options to children and young people with an Autism Spectrum Disorder, and their families. In that time presentation with an Autism diagnosis has increased dramatically, from 25% of clients in 2005 to over 80% in 2015.5 The most significant variation in appears to have been in children formerly diagnosed with Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD) now presenting with a diagnosis of ASD.

As far as FamilyCare is aware there is no easily accessible, specific data on the incidence of ASD covering our service area. We believe however, based on the

1 Autism Spectrum Disorders: Guidance, Research and Federal Activity: Gregory L. Campbell and Anthony O. Phillips, 2012. 2 Autism in Australia, 2012: Australian Bureau of Statistics, 2014. 3 Dr. Jacques Duff Psychologist, Australian Autism ADHD Foundation, www.autism-adhd.org.au, 2012. 4 Autism Diagnosis in Children and Young People: Recognition, referral and diagnosis of children and young people on the autism spectrum. National Institute for Health and Clinical Excellence, 2011 5 At the time of preparing this submission, FamilyCare’s Disability Support Services is working with 125 clients, of which 103 have an ASD, or pending diagnosis.

data that does exist, it is likely that the proportion of children, young people and families with an ASD diagnosis is slightly higher than the prevalence evident across the general population.6

Changes to the Disability Act 2006, as well as more accessible funded Autism support programs have encouraged parents/carers to seek formal diagnosis so that children are eligible for services. In FamilyCare’s experience parents are generally reluctant to have their children diagnosed and as a result labelled, however these funding programs create an incentive for families who desperately need to access services to help their children develop.

2. The availability and adequacy of services provided by the Commonwealth, State and local governments

Services for people with ASD across a range of support needs including health, education, housing, sport and employment are scarce, expensive, and lacking in flexibility. Unless the person with ASD has a government funding package, or their family has the means to support them, these services are often unobtainable.

In rural and regional Australia, Autism and disability services in general, are even harder to secure. The person with ASD living in a regional area may have funding for respite, speech or occupational therapy, but have no practical options for access locally. Often the options that do exist require significant travel, with related expenses not included in the funding.

Whilst FamilyCare strongly supports the principles underpinning the NDIS it is entirely unclear whether it can evolve to suit the circumstances of rural and regional communities. There are enormous differences in the needs of rural and regional areas in comparison to large cities and metropolitan centres. We understand the benefits of common approaches to system design. Transition that does not recognise the reality of locational disadvantage however will do little to improve access for people with ASD in rural and regional areas and may in fact make the situation worse.

6 For example the first State of Greater Shepparton Children’s Report released in April 2014 notes that the proportion of children and young people with a disability, across three recorded age ranges (0-4, 5-14 and 15-19) is in each instance slightly higher than the State average. The State of Greater Shepparton’s Children’s Report can be accessed on the Greater Shepparton City Council website: http://greatershepparton.com.au/community/childrens-services/childrens-programs/children-report.

3. Recommendations for improving regional service quality and availability

FamilyCare provides the following recommendations, based on our experience of working with clients, families and service colleagues.

We believe that rural and regional communities require:

  • Improved access to assessment and diagnostic services for children and adults;
  • Increased capacity to investigate and design pathways for appropriate therapy;
  • Targeted support to attract specialist therapy services to regional population centres and in turn provide meaningful access to smaller communities;
  • Access to multi-disciplinary services as required, providing a continuum of care;
  • Improved, place-based information, education and skills training for carers/parents, siblings and family members, including counselling and mediation as required; and
  • Increased coordination of existing service platforms, particularly key universal services for early childhood and in primary schools.