Select Committee on Autism
Commercial in Confidence
Submission 128 - Attachment 2

1

Marymead Autism Centre

Autism Community Needs Analysis Report

July, 2019

Commercial in Confidence 5

FOREWORD

Marymead is a not-for-profit organisation servicing the ACT and southern and western regional areas of NSW which aims to deliver high quality support services aimed at children, young people and families. The Marymead Autism Centre provides services specific to families, carers and individuals in the ACT community who live with autism spectrum disorder.

Marymead identified a strategic imperative to be better informed about service and support needs for future planning initiatives. RSM Canberra offered to provide corporate support for the project. The Marymead Autism Centre Committee was engaged to provide advice and insight to the research and report development.

RSM’s approach was in two stages:

1. Completed a desktop analysis of publicly available information, reports and research.
2. Developed and distributed a quantitative and qualitative survey to collate community feedback regarding their experiences of caring for an individual with ASD or as an individual who has been diagnosed with ASD.

The quantitative survey received a total of 219 responses from a broad cross section of the community. We would like to extend our heartfelt thanks to all the participants across the ACT and surrounding region who shared their insights and experience with us on this project.

Andrew Sykes
Partner RSM

DISCLAIMER

This report has been prepared by RSM for the Marymead Autism Centre.

The report is not to be used by any other party for any purpose nor should any other party seek to rely on the opinions, advices, or any information contained within this report without the prior consent of RSM. The report is the property of Marymead.

RSM disclaims all liability to any party other than Marymead in respect of, or in consequence of, anything done, or omitted to be done, by any party in reliance, whether whole or partial, upon any information contained in this report. Any party, other than Marymead, who chooses to rely in any way on the contents of this report, does so at their own risk. The information in this report and in any related oral presentation made by RSM is confidential between RSM and Marymead and should not be disclosed, used, or duplicated in whole or in part for any purpose except with the prior consent of RSM.

Liability limited by a scheme approved under professional standards legislation.

LIST OF ABBREVIATIONS

Significant debate exists within the Autism community surrounding the use of “person-first” and “identity-first” language. In this report, RSM has utilised “person-first” language in alignment with the preference of the majority of Marymead’s stakeholders.

Autism Community Needs Analysis

Executive Summary

Key Findings, Themes and Implications

About this Report

This report has been developed on behalf of RSM to:

• Understand the ASD community in Canberra and surrounds, including parents, families, and people of all ages with autism;
• Understand the service needs of the ASD community, and the gaps in the current market and;
• Identify new opportunities to meet the needs of the ASD community.

This report is based on research conducted over 2018/2019 using a two stage process:

1. Desktop Review of publicly available published research and information;
2. Bespoke quantitative and qualitative online survey distributed to the ASD Canberra community during November 2018

The research focused on key themes and issues outlined below;

• Demographics of the ASD community
• Diagnosis experience
• NDIS experience
• Marymead experience
• Service experience, needs and accessibility

Executive Summary Overview - Key Themes

Mental health

• The core challenge for carers as well as for people with ASD, primarily anxiety, depression, violence to self & others, and isolation.
• Nearly 30% of respondents report that they, ‘Don’t leave the house often’. There is a need for flexible and responsive support services that include home visits as needed.

Relationships

• 65% of respondents reported life skills development programs across all ages as very valuable to support & develop peer, sibling and family relationships.
• Such skills enable community participation.

Carer support

• Family support and social work supports are valued more highly by carers than respite.
• 31% of carer respondents do not access any support services and 80% of this cohort experience anxiety.

System Support

• A theme of confusion and feelings of being overwhelmed in accessing and navigating the complex and multi-jurisdictional system, including NDIS, health, education, justice, housing and employment, was expressed throughout the survey.
• 20% of respondents have not applied for the NDIS, with the majority stating a lack of information as the reason for their choice.

Executive Summary Overview - Autism Centre feedback in the Survey:

• 43% of respondents have had engagement with Marymead support services. Many provided positive written qualitative feedback on their interactions with services received.
• Marymead Autism Centre services were rated ‘Very Important’ by respondents who also valued an Autism-specific local source of knowledge and experience.
• Marymead’s support groups were rated ‘Very Important’ by respondents, particularly Parents and Carers Group, Siblings Group and Kids Companions, with 65% of respondents reporting life skills development programs as very valuable.
• Marymead Autism Centre services that are also important to respondents are Information and Referral, NDIS preparation planning and review planning, and Support Coordination.
• The Autism Centre’s newsletter was rated as ‘Very Important’ and its content is highly regarded and accessed as a source of information across the community.

“I found the information meetings about autism in general, services available, diagnosis and NDIS very helpful both for meeting other parents and for questions posed.”

“I found Marymead to be an oasis in the desert.”

Executive Summary Overview: Summary of identified needs in the Survey:

• Support for families and individuals for mental health supports, especially anxiety.
• Supports for carers including support workers, mental health services and respite.
• Demand for therapy services for all age groups.
• Earlier access to diagnosis and improved preparation for planning meetings, with interim supports.
• Growing demand for pre-teens, teens, adults and women/girls supports during diagnosis and during “early days”.
• Respondents indicated that they are suffering both information overload and confusion and need support to navigate the service landscape.
• Supports to prepare individuals for NDIS planning meetings.
• Capacity building families to grow and develop NDIS goals with children’s development.
• Targeted support for individuals not currently accessing NDIS services.
• Autism is a social communication disability, and ongoing support is needed to assist individuals and families with building and maintaining relationships.
• Building capacity of friends and families to support their friend or family member will be required ongoing.
• If an individual (carer or individual with ASD) does not have friends or family, then a key pillar of support does not exist.
• Ongoing requirement to provide support for community interaction and engagement with living for all age groups.
• Carers need more support than a “break” — social support and community engagement, and other supports which may not be funded by the NDIS.
• Due to the learning challenges inherent with ASD, a person diagnosed with autism requires ongoing and additional support to maintain and learn new skills.
• Employment opportunities for individuals with ASD.
• Capacity building and skills development programs for young people to engage in employment and the community.
• Autism-specific local source of knowledge and experience.
• Key programs such as Kids Companions, Siblings support, Newsletter, Information and Referral, NDIS pre-planning and review were rated as “Very Important”.
• NDIS support services were scored by majority of respondents as “Very Important” or “Okay”, indicating ongoing need in the community for NDIS support.
• Respondents value general communication and insights about Marymead and Autism.

Desktop Analysis and Survey Key Findings

Identified Needs

• Support for families and individuals for mental health supports, especially anxiety.
• Supports for carers including support workers, mental health services and respite.
• Demand for therapy services for all age groups.
• Respondents need support to navigate the service landscape.
• Earlier access to diagnosis and improved preparation for planning meetings, with interim supports.
• Growing demand for pre-teens, teens, adults and women supports during diagnosis and during “early days”
• Supports to prepare individuals for NDIS planning meetings.
• Targeted support for individuals not currently accessing NDIS services.
• Capacity building families to grow and develop NDIS goals with children’s development.
• Autism is a social communication disability - ongoing support to assist building and maintaining relationships.
• Building capacity of friends and families to support their friend or family member will be required ongoing.
• Ongoing requirement to provide support for community interaction and engagement with living for all ages
• Employment opportunities for individuals with ASD
• Capacity building and skills development for young people to engage in employment and the community.
• Due to the learning challenges inherent with ASD, a person diagnosed with autism requires ongoing and additional support to maintain and learn new skills.

Desktop Analysis and Survey Key Findings

Diagnosis of Autism Spectrum Disorder (ASD)

The first stage of this project investigated the currently available research and information from AIHW, ABS, NDIA and other sources. This provided a background to the current landscape and identified broader issues and themes, informing the development of an online consumer survey conducted in November 2018. The survey was completed by 219 individuals of Canberra and surrounds who identified as having ASD or caring for an individual with ASD.

• Fewer families qualify for access to “early days” programs and other early carer supports such as playgroup
• Majority of children with ASD will not access a full program of NDIS early childhood, early intervention services
• Increased demand for adult diagnosis
• Supports must be tailored appropriately for all ages
• The majority completed by private psychologists
• Over 50% of individuals diagnosed with ASD experienced waited over 12 months for diagnosis
• This number rose to 55% for diagnoses carried out in the public system

Desktop Analysis and Survey Key Findings

NDIS Access

• Respondents who had plans for less than one year had highest satisfaction rating
• Need for education for informal carers around available supports
• Of those who do not plan on applying for the NDIS, 62% directly or indirectly referenced a lack of information as to the reason why they do not plan on applying
• Small cohort diagnosed with ASD who are not eligible for the NDIS

Desktop Analysis and Survey Key Findings

Challenges Faced

• Predominantly anxiety and depression
• Behavioural management supports are likely to increase (with population) and complexity
• Life skills programs likely to be in high demand
• Increased demand for support to engage with education
• Demand for employment focused social development programs
• Small cohort who expressed a desire to work and seek employment

Desktop Analysis and Survey Key Findings

Marymead Access

• A further 25% of the survey respondents have accessed Marymead services in the past
• Parents and Carers rated Marymead as “Important” or “Okay”. There were no scores against “Not important”
• All services scored by majority of respondents as “Very Important” or “Okay”
• Over 95% of respondents who access Marymead service receive the Newsletter
• Majority of individuals rate the Newsletter as very important

Desktop Analysis and Survey Key Findings

Access to Disability and other services e.g. health and education

• Written responses in the survey noted that engaging with services was challenging to navigate
• Allied Health Services — both privately, publicly and Medicare funded services have high engagement
• Respondents reported lower levels of engagement with ACT Health services and Mental Health services compared to broader medical and allied health services
• Even distribution across all ages of individuals with ASD
• Improved life skills fosters greater community participation

Core Challenges for Carers and Individuals

• Transport: 23
• Housing: 12
• Peer relationships: 82
• Personal development: 55
• Personal care: 48
• Relationships: 74
• Employment: 36
• Transitions: 70
• Sensory issues: 86
• Communication: 52
• Independence: 46
• Self-harm: 21
• Education support: 60
• Violence towards me: 32
• Violence towards family: 40
• Violence towards others: 28
• Absconding: 20
• Inappropriate behavior: 55
• Lack of respite or support: 66
• Lack of sleep: 62
• Sibling/s relationships: 60
• Other mental health issues: 39
• Other physical disabilities: 13
• Depression: 66
• Anxiety: 121
• Don’t leave the house often: 60

What are the biggest challenges for you and your family right now, with caring for a person with autism spectrum disorder? (N=213)

Themes and Implications for Marymead Autism Centre

Clinical Intervention — Mental Health and Allied Health Therapy

• High prevalence of mental health issues amongst individuals not accessing support services. Over 80% of survey respondents who do not access community (or Marymead) supports report anxiety as a challenge.
• One third of carers do not access any carer supports. For those that do access supports, fewer access supports that they rate as important. E.g. 41% carers access psychologist / counsellor, whereas 53% identified it as their most important service.
• Needs for supports such as therapy and skills development is consistent across all age cohorts.
• Diagnosis and NDIS approval times are lengthening for some participants
• Future trends indicate that adult diagnosis rates and female diagnosis rates are likely to grow.
• Respondents also referenced other challenges including Depression and Isolation.

Identified Need: Support for families and individuals for mental health supports, especially anxiety.

• Address gaps created by jurisdictional boundaries between Health, Education and the NDIS
• Target individuals who do not have an NDIS plan
• Increase information on available services outside the NDIS

Identified Need: Supports for Carers including support workers, mental health services and respite.

• Highly important services which may lack accessibility
• Develop affiliation with individual service providers to reduce cost/wait time
• Building capacity to work with support services for families

Identified Need: Demand for therapy services for all age groups.

• Consider planning support for various age groups such as pre-teens, teenagers, young adults and key life stage transition points (preschool, high school, college and employment

Identified Need: Earlier access to diagnosis and improved preparation for planning meetings, with interim supports.

• Advocate to reduce NDIS plan approval/diagnosis times in public sector
• Advocate the importance of early diagnosis to access early intervention

Identified Need: Growing demand for pre-teens, teens, adults and women/ girls supports during diagnosis and during “early days”.

• Specialised diagnostic services for females
• Consider internal diagnostic service for young and older adults

Themes and Implications for Marymead Autism Centre

Information and Coordination

• Information — access and ability to navigate the jurisdictional landscape was raised as a core theme throughout the survey across all topics.
• Respondents report confusing nature of meetings and unpredictability of outcomes when engaging with NDIS and LAC.
• Respondents reported a reduction in NDIS funding over successive years, concern about the impact on the future.
• While a majority of respondents have an NDIS plan, there is a small cohort who are not eligible for NDIS supports, or refuse to apply for the NDIS, but clearly state need for supports.

Identified Need: Respondents indicated that they are suffering both information overload and confusion and need support to navigate the services landscape.

• Assistance with administration and preparing for engagement with all government services
• Coordination of activities across government services, therapy
• “life coaching” or social worker support highly valued

Identified Need: Supports to prepare individuals for NDIS planning meetings

• Promoting and educating families on the benefits of NDIS for those that have not applied
• Tailor services to individual circumstances
• Increased provision of NDIS pre-planning and review services

Identified Need: Capacity building families to grow and develop NDIS goals with children’s development.

• Consider planning support for various age groups such as pre-teens, teenagers, young adults and key life stage transition points (preschool, high school, college and employment

Identified Need: Targeted support for individuals not currently accessing NDIS services.

• Promoting and educating families on the benefits of NDIS for those that have not applied.
• Target individuals who do not have an NDIS plan for specific education/ support.
• Improved awareness and accessibility of respite services external to the NDIS.

Themes and Implications for Marymead Autism Centre

Social and Community Support

• Relationships — Peer, Family and siblings were scored as key supports for individuals and families.
• Friends and Family are the largest sources of support (after Psychology and therapy)
• Community Participation and Life Skills (after therapy) were rated as the most important supports needed for a person diagnosed with ASD across all ages.
• Respondents rated Family Support / Social worker supports more highly than respite. Disparity between utilization of support workers (17%) and rating of support workers being the most important service (34%).

Identified Need: Autism is a social communication disability, and ongoing support is needed to assist individuals and families with building and maintaining relationships.

• Capacity building the family, friends networks and broader community to engage and support individuals on the spectrum is needed
• The high rates of anxiety noted by respondents also suggests that there are broader issues with social engagement that require services and support

Identified Need: Building capacity of friends and families to support their friend or family member will be required ongoing.

• “Early Days” and other programs for friends and family
• Information and education on how to support autism

Identified Need: If an individual (carer or individual with ASD) does not have friends and family, then a key pillar of support does not exist.

• Facilitating, building and sustaining friendship networks

Identified Need: Ongoing requirement to provide support for community interaction and engagement with living for all age groups.

• Consider inclusive approaches not funded under NDIS services, especially groups and connection with mainstream activities.

Identified Need: Carers need more support than a “break” - social support and community engagement, and other supports which may not be funded by the NDIS.

• Anxiety and mental health issues also affect carers.
• Feedback in survey indicated a need for more holistic case management with mental health services and health services.

Themes and Implications for Marymead Autism Centre

Capacity Building Living Skills and Employment

• Life Skills Development and Skills Development rated as very important supports.
• High rates of unemployment amongst ASD community
• Employment training and support, life skills development, community participation are the most valuable and important supports for young adults.

Identified Need: Due to the learning challenges inherent with ASD, a person diagnosed with autism requires ongoing and additional support to maintain and learn new skills.

• When considering the core challenges for families and individuals, the ability for an individual to transfer their learning into practice suggests there are opportunities to develop programs supporting learning.
• Exploring what “life education” and “life skills development” means for families and individuals is an important next step.

Identified Need: Employment opportunities for individuals with ASD.

• Increased awareness of ASD and management techniques
• Affiliation with companies recognised as fully inclusive workplaces
• Improved awareness of ASD in workplaces
• Support for developing workplace adjustments with employers

Identified Need: Capacity building and skills development programs for young people to engage in employment and the community.

• Focus on building independence and community relationships.
• Building community awareness of autism.
• Creating employment opportunities.
• Focus on NDIS employment pre planning supports.
• Consider providing School Leaver Employment Supports.

Themes and Implications for Marymead Autism Centre

Experience with Marymead Autism Centre Services

• Marymead Autism Centre services rated as High Importance by respondents.
• All parents or carers rated Marymead Autism Centre’s services as “Important” or “Okay”
• Marymead Autism Centre NDIS planning and review planning, Supports coordination and Information and referral services have high engagement with respondents.
• Marymead’s newsletter has a high awareness amongst respondents, with majority rating it as “very important”

Identified Need: Autism specific local source of knowledge and experience.

• Autism specific services are in demand by respondents.

Identified Need: Key programs such as Kids Companions, Siblings, Newsletter, Information and Referral, NDIS preplanning and review were rated as “Very important”.

• Development of Kid’s companions and siblings group (with view that further research on child engagement with programs is required.)

Identified Need: NDIS support services were scored by majority of respondents as “very important” or “okay”, indicating ongoing need in the community for NDIS support.

• Respondents who have engaged with Marymead Autism Centre, provided positive written feedback on their interaction with services. “I found the information meetings about autism in general, services available, diagnosis and NDIS very helpful both for meeting other parents and for questions posed”

Identified Need: Respondents value general communication and insights about Marymead and Autism.

• Consider role the newsletter plays in communication with the community and consider expansion into online/ social media platforms.

Autism Community Needs Analysis

Research Design a

RSM

OBJECTIVES

BUSINESS OBJECTIVES

• Understand the needs of the ASD community in Canberra and surrounds — needs are defined as “a process of describing “problems” of a target population and possible solutions to these problems”.
• Identify participation, strengths and weaknesses of the current disability services provided.
• Understand the role that Marymead Autism Centre could play in the lives of people, families and young children with ASD.
• Understand the “value proposition” of the Marymead Autism Centre to the ASD community.

RESEARCH OBJECTIVE

• Compile a demographic profile of the ASD community in the ACT, and understand attitudes, life stage and challenges.
• Identify and define the needs of all people who identify as having ASD in the community, including young people, teenagers, young adults, middle aged and elderly people.
• Identify and define the needs of all carers and families of people who identify as having ASD.
• Identify barriers and incentives to having needs met.
• Understand attitude towards current disability services for people with ASD.

RESEARCH METHODOLOGY

RESEARCH DESIGN

• An online questionnaire was chosen as the main vehicle for data collection.
• The survey was published and circulated in November 2018 and responses were received during November / December.
• The questionnaire was tested with The Marymead Autism Advisory Group which included parents and carers of individuals who identify as ASD, individuals who identify as ASD as well as professionals working in the community.
• Respondents included a broad range of people with varying abilities to communicate and participate in research.
• Adjustments made included:
  • Reducing scales to 3 points to avoid confusion for people with ASD
  • Literal and clear language utilised
  • Acknowledgement of individual’s preference for ‘person first’ language
• Distribution and promotion of the survey occurred through several mediums and spanned across Marymead’s clients and broader networks. The mediums utilised were:
  • Marymead and Marymead Autism Centre communications e.g. newsletter and website
  • Parents and Citizens Associations
  • Social Media e.g. Facebook

Survey Respondents Profile

• 218 respondents Canberra and surrounds
• In field November 2018
• Online link distributed via Marymead communications channels, social media and community networks.
• Reflected age distribution of current diagnostic profile in ABS.
• 14% of respondents who were carers of children with ASD were also diagnosed with ASD or another disability themselves.
• Majority of respondents are carers of young people with ASD.
• The respondents lifestage reflected a 50% split between young families (primary school age or younger) and older families (teenage children)
• Demographic and psychographic information on respondents to gather attitudinal, lifestyle and family data, including socioeconomic questions
• Diagnosis experience
• NDIS experience
• Marymead experience
• Supports outside NDIS and Marymead services
• Gaps and unmet needs

Autism Community Needs Analysis

Detailed Analysis and Observations a

RSM

SNAPSHOT SURVEY RESPONDENTS

Age of person with ASD

219 Respondents from the survey.

36-45 26-35

The most frequently occurring age groups for ASD individuals were 3-4 and 5-9.

NDIS Plans

Estimated 2800 people with ASD in the ACT, of which 1,730 have NDIS plans.*

Sample was found to be an accurate representation of the population for NDIS participation. 63% of the sample were accessing plans vs an estimated 62% access rate for the population.**

*(as at Sep 2018)

**Note: No statistical difference in sample means was found at the 99% confidence level

SAMPLE BY RESPONDENT ROLE

N=215

• I am the parent or carer of one or more children or young person/s who have been diagnosed with autism spectrum disorder
• I am the parent or carer of one or more adults who have been diagnosed with autism spectrum disorder
• I have been diagnosed with ASD and I am also the parent or carer of another person with autism spectrum disorder
• I have been diagnosed with ASD and I am also the parent or primary carer
• I have a disability and I am the parent or carer of another person/s with autism spectrum disorder
• I am the grandparent of a young person or adult with ASD
• I have been diagnosed with ASD and am a parent

This question highlighted the role of the respondent and the relationship the hold with the individual diagnosed with ASD.

Majority of respondents were the parents or carers of young people (under 18) with ASD. 14% of these parents have also been diagnosed with ASD or another disability.

This sample is reflective of the Australian Bureau Statistics published demographics of the Autism community in the ACT, with majority of individuals currently diagnosed being under 18.

SAMPLE BY FAMILY DYNAMIC

N=212

• Young Single: 5%
• Young Family (Primary school/younger children): 38%
• Young Couple: 2%
• Older Single: 10%
• Older Family (Teenagers or older): 36%
• Older Couple: 5%
• Empty Nester (kids moved out): 3%:

This question demonstrates the current “life stage” of the respondents in the survey.

A significant proportion (38%) of respondents are young families with children at a primary school age or younger (under 12).

The next highest proportion of respondents were families with teenagers or older children.

EMPLOYMENT AND DIAGNOSIS OF CARERS

N=213

• This chart displays carers employment status of carers against the diagnosis of their respective beneficiary.
• A clear correlation exists between the severity of ASD diagnosis and an inability to work full or part time — just over 40% of carers to a Level 3 individual work Full or Part Time vs over 70% for Level 1

SAMPLE BY DIAGNOSIS

N=198

What is the formal diagnosis for your person/s diagnosed with an autism spectrum disorder?

N.B. DSM IV was superseded by DSM 5 in 2013.

• The respondent base is reflective of a range of diagnoses, from DSM IV and 5. There is also a broad range of experience in diagnostic severity.

• Individuals who responded were more likely to have a less severe diagnosis

• DSM 5 Level 1 ASD: 48

• DSM 5 Level 2 ASD: 48

• DSM 5 Level 3 ASD: 18

• DSM IV Asperger’s Syndrome: 45

• DSMIV Autistic Disorder: 26

• DSMIV PDD-NOS

• I self identify as having ASD

• Other eg. ICD10

• Pervasive Developmental Disorder

SOURCE OF DIAGNOSIS

N=228

Who was your person diagnosed by?

• Psychiatrist: 24
• Private Psychologist: 108
• Private Paediatrician: 33
• Community or Public Paediatrician: 11
• Child Development Service: 19
• Therapy ACT: 22
• Other: 11

N.B.- We assume that all “psychiatrist” responses are privately funded, due to service availability in the ACT, however the survey did not specifically differentiate between public or private psychiatrist. N.B.B — This was not broken down by state

This question seeks to understand the respondent’s source of diagnosis.

From many longer responses in the survey, it is clear that the delay within community or public services was simply too great and as such respondents would often turn to private services. Over 60% of diagnoses are completed by private practitioners.

This method was often undertaken despite a lack of financial security.

“The wait was too long… We consulted privately which cost money we didn’t really have.”

TIME TAKEN FOR FORMAL DIAGNOSIS

N=180

From your first appointment with a medical practitioner, how long did it take until your person’s diagnosis was formalised in a written report

This graph highlights the time from first appointment with a practitioner to the time of formal diagnosis.

From the time of first raising concerns with a medical practitioner, less than half of respondents received their diagnosis in less than 6 months.

• 40% of people diagnosed with DSM 5 level 1 ASD spent 12-18 months waiting for assessment and diagnosis.
• 36% of level 1 ASD and 24% of level 2 ASD diagnoses take more than 2 years for a diagnosis.

Implications:

Long delays in diagnosis results in fewer opportunities for early intervention.

TIME TAKEN FOR FORMAL DIAGNOSIS — PRIVATE VS PUBLIC PRACTITIONERS

N=180

From your first appointment with a medical practitioner, how long did it take until your person’s diagnosis was formalised in a written report

Private Practitioners

• <3 months
• 3-6 months
• 6-9 months
• 12-18 months
• 3+ years

Public Practitioners

• <3 months

• 3-6 months

• 9-12 months

• 18 months - 2 years

• 2-3 years

• 3+ years

• This demonstrates a breakdown of the time for formal diagnosis by the method of diagnosis.

• While over 55% of diagnoses occur within 9 months through private practitioners, this figure is just over 30% in the public system.

• Similarly, significant delays are more common with public practitioners — over 40% take more than 18 months for diagnosis.

Select Committee on Autism

Submission 128 - Attachment 2

35

“It took twelve horror years until we got our daughter a diagnosis that finally helped her get the support she needed.”

“…so we missed out on any early intervention and support.”

“Lengthy wait, very expensive.”

“4 year old still waiting for formal diagnosis by Child Development Service despite Paediatrician, OT, Speech Therapy and Psychologist all confirming ASD.”

“A child getting a diagnosis or not FREQUENTLY depends on the parent’s understanding of autism or what the psychologist is asking”

NDIS INTERACTION

N=246

DO NOT plan to apply to the NDIS 48

NDIS plan approved in the past 12 months 47

TIME FOR NDIS PLAN APPROVAL

N=135

How many months did it take from applying for the NDIS to having an approved NDIS plan?

“1 year plus now since applying for NDIS and still waiting. Need advice.”

NDIS Plan >1 Year

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

NDIS Plan <1 Year

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

NDIS - REASON FOR NOT APPLYING

N=23

| don’t feel that I / we need the NDIS

33%

26-35

Diagnosis was made recently

5%

It’s too hard / difficult to apply

18%

I don’t know enough

5%

EXPERIENCE WITH NDIS

N=135

39

NDIS Plan for greater than 1 year

NDIS Plan for less than 1 year

Paying/claiming for supports

Accessing supports

Quality of NDIS plan

Engaging with Early Childhood Partner

Engaging with Local Area coordinator

Determining Eligibility

Very Satisfied | Neutral | Very Dis-satisfied | Does not apply

42 16

20 40 60 80

Paying/claiming for supports

Accessing supports

Quality of NDIS plan

Engaging with Early Childhood Partner

Engaging with Local Area coordinator

Determining Eligibility

20% 40% 60% 80% 100%

Very Satisfied | Neutral | Very Dis-satisfied | Does not apply

What would you like to change about the process of engaging with the NDIS?

• “Make applying and notifications easier to understand.”
• “Having someone who would walk me through the whole process from start to finish and tailor services to our needs.”
• “It’s so confusing when you have no idea what you can and can’t get funding for.”
• “Listen and understand that not every family is the same… Needs differ in each case.”
• “In the beginning it was extremely confusing to try and navigate and understand the NDIS.”

This question aimed to identify which Marymead programs or services the respondents were involved in due to the smaller nature of the groups the numbers of the groups are as expected, and indicate that the respondents to this survey have a broad based interaction with Marymead autism centre services.

• 18% of respondents are currently accessing Marymead services
• 24% of respondents have accessed Marymead services in the past

please note this reflects the survey respondents experience, and does not represent the total number of individuals accessing these services.

ACCESS TO MARYMEAD AUSTISM CENTRE PROGRAMS

Which Marymead programs or services have you been involved in?

N=40

• Kids companions
• Autism awareness
• Access days
• Dungeons and dragons
• Siblings group
• Mens group
• Partners group
• Grandparents group
• ASD parents/carers
• Early Days Workshop
• marymeadautismcentre
• Newsletter
• Boundless Buddies
• NDIS pre-planning and
• NDIS Supports
• Information and referral
• Marymead autism

• Kids companions is not specifically an Autism Centre service

MARYMEAD SERVICES IMPORTANCE

N=40

HOW IMPORTANT WAS THIS PROGRAM FOR YOU AND/OR YOUR PERSON WITH ASD?

• Not Important
• Okay
• Very Important

The relative importance of various programs and interaction points with Marymead is interesting. No parent respondent rated Marymead Autism Centre’s services as “not important”.

It is also worth noting that parents answered this survey on behalf of their children, so results should be viewed through a lens of parental choice and support for the children’s programs.

• “More services for adults with ASD. [Adult] social groups are so important.”
• “Need to set up an adult diagnostic service and ongoing support for those diagnosed late.”
• “Be more visible in the community.”
• “I found the information meetings about autism in general, services available, diagnosis and NDIS very helpful both for meeting other parents and for questions posed”
• “Advocating for changes for NDIS to help families, ie. with transparency of process and decision making accountability.”

ACCESS TO SUPPORT SERVICES

N=195 What supports are you accessing or have you accessed that are not NDIS funded?

• No services
• Medical services eg. Paediatrician, General Practitioner, Medical specialists
• Playgroup eg. Playconnect or other group
• Other Marymead services
• Marymead Autism Centre
• Other privately funded therapy
• Privately funded applied behaviour analysis therapy
• Privately funded allied health services eg. private psychologists or speech pathologists
• Publicly funded Mental Health services eg. CAMHS, AMHU or other ACT Health based services
• Publicly funded ACT Health services eg. Child Development services, Community Health intake
• Education and school based assistance
• Medicare funded allied health services eg. private psychologists or speech pathologists

Predominantly services being accessed that are not funded by NDIS are health (medicare), education or playgroup services.

Education and school based assistance alongside medical services are relatively accessible. However, external research and commentary indicates that improved awareness of ASD amongst these services is required.

An observation is that families are not accessing carer supports such as social workers, or family supports that are not NDIS funded.

MOST VALUABLE AND IMPORTANT SUPPORTS

N=195 What would be the most valuable and important supports for you and your person/s with an autism spectrum disorder?

• Family Support / Social work
• NDIS Supports Coordination
• Skills development
• Respite / Short Term Accommodation
• Life skills development
• Live independently
• Household tasks
• Assistive Technology (eg. iPad, noise cancelling…)
• Home Modifications eg. security screens
• Behaviour Management
• Exercise Physiologist
• Dietician
• Social activities
• Community Participation
• Recreational activities
• Support Worker
• Therapy eg. Speech, OT, Psychologist
• In home support
• Life education
• NDIS Plan Management
• Employment training and support
• Early Intervention

0% 10% 20% 30% 40% 50% 60% 70%

• 0-9
• 10-17
• 18+

This question was asked from a neutral perspective, not wanting to skew results towards funding sources such as the NDIS.

Over 50% of individuals referenced life skills development as one of the most important supports they could receive, while just under 50% noted community participation.

Over 50% of individuals also mentioned therapy as one of the most important. Private access to this may be too expensive for many families while public offerings may have significant time delays.

Interestingly, broader life skills development is fairly evenly spread across all age groups. Obvious skews for employment and training (older) and early intervention/therapy (younger) are apparent.

“Teachers in schools should have training to identify students who may be on the spectrum”

“Shared care with mental health services so there is a more holistic case management for those with ASD.”

“More awareness in the community, especially in Primary Schools”

SUPPORTS — NDIS AND NON NDIS FUNDED

N=167 What supports are you accessing or have you accessed?

• I do not access any services for carers
• Exercise Physiologist
• Dietician
• Consumables
• Home Modifications
• Behaviour Management
• Assistive Technology
• Psychologist or Counsellor
• Social Activites
• Child Care Supports
• Friends
• Family
• Employment training and support
• Community Participation Supports
• Parent/ Carer Training
• Support worker
• Therapy
• In home support
• Support groups
• Early Intervention
• Respite
• Short Term Accommodation (Respite)

0 10 20 30 40 50 60 70 80

This chart illustrates potential gaps between the jurisdictions of health, education and disability.

31% of carers currently don’t access any supports, either through the NDIS or separately.

Although a high utilisation of Psychologists or Counsellors (41%) exists, it is less than the 53% of individuals that identified it as one of their most important services.

A significant disparity also lies within the utilisation of support workers, with 17% usage and 34% identifying it as the most important service.

To note,

1. Support Coordinators and Support Workers may be included in the same grouping in these responses.
2. Support workers may or may not overlap with respite in this survey.

CHALLENGES FACED

N=213 What are the biggest challenges for you and your family right now, with caring for a person with autism spectrum disorder?

• Transport
• Housing
• Peer relationships
• Personal development
• Personal care
• Relationships
• Employment
• Transitions
• Sensory issues
• Communication
• Independence
• Self-harm
• Education support
• Violence towards me
• Violence towards family
• Violence towards others
• Absconding
• Inappropriate behavior
• Lack of respite or support
• Lack of sleep
• Sibling/s relationships
• Other mental health issues
• Other physical disabilities
• Depression
• Anxiety
• Don’t leave the house often

0 20 40 60 80 100 120

Over 56% of respondents mentioned anxiety as their biggest challenge.

The key challenges are –

• Anxiety
• Peer relationships
• Sensory issues
• Education Support
• Relationships
• Transitions
• Inappropriate Behaviour
• Siblings Relationships
• Lack of respite
• Lack of sleep

Of concern, is the challenges that impact safety of the family, carer and individual, which includes violence, self harm, absconding and mental health issues.

CHALLENGES - NOT ACCESSING SUPPORTS

• Sibling/s relationships
• Other mental health issues
• Other physical disabilities
• Depression
• Transport
• Housing
• Anxiety
• Violence towards me
• Other, please describe:
• Lack of respite or support
• Lack of sleep
• Absconding
• Inappropriate behavior
• Violence towards others
• Violence towards family
• Peer relationships
• Personal development
• Personal care
• Relationships
• Employment
• Transitions
• Self-harm
• Education support
• Sensory issues
• Communication
• Independence
• We don’t get to leave the house very often

0% 10% 20% 30% 40% 50% 60% 70% 80% 90%

This graphic displays the challenges faced by respondents who advised us that they are not accessing supports.

Over 80% of these individuals suffer from anxiety, while over 50% mention peer relationships as a significant struggle for their individual with ASD.

Select Committee on Autism Submissioneat28.—Aitachimente

—— NS Ld

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