Submission 128 — Marymead Autism Centre — Select Committee on Autism

BRIEFING PAPER FOR THE

SENATE SELECT COMMITTEE ON AUTISM

Inquiry into the services, support and life outcomes for autistic people in Australia

27 July 2020

Marymead supports the development of a national autism strategy with local implementation. The key to success of a national autism strategy for people is ensuring that families/carers with family members on the autism spectrum, are able to access information, emotional and social support in a timely way, and are connected to local community organisations who can support them in the long term through life transitions.

Marymead and ADACAS (ACT Disability Aged Carer Advocacy Service) acknowledge that we respect the breadth of the autism spectrum, and autism conceptualised as neurodiversity, and appreciate that not all autistic people identify as people with disability.

Experiences of autism and the autism spectrum vary very widely, and thus responses/systems designed to provide support for autistic people and their families need to be able to be nuanced and able to respond to individual need.

The language this submission uses identity first language and ‘person on the autism spectrum’. A study by LaTrobe University in February 2020 found that ‘autistic person’ and ‘person on the autism spectrum’ were the preferred terms, with ‘person on the autism spectrum’ the most preferred term as ‘autistic person’ can be a polarising term.

The information provided to the Inquiry is sourced from:

• Marymead Autism Centre data/evidence
• ADACAS – ACT Disability Aged Carer Advocacy Service
• RSM, “Autism Community Needs Analysis Report” (July 2019), independent research prepared for Marymead.

1

CONTENTS

1.  Summary of Recommendations                          3

2. RSM Autism Community Need Analysis report 5 3. Barriers to accessing supports 6

4.  Barriers to building independence                        9

5.  Gaps in Government services                            12

6.  About the Marymead Autism Centre                      15

7.  About ADACAS                                       16

2

Summary of Recommendations

Decrease in Diagnostic Cost and Waitlists

• Appropriate funding for the Child Development Service to retain an experienced diagnostic team and expand the team to shorten the waitlist for diagnosis.

• Additional funding for the Child Development Service to provide ASD diagnosis for children over 12 years of age.

• Increased number of paediatricians to reduce wait times to see a paediatrician.

• Medicare rebate for private ASD diagnosis for all ages, including adults.

• Consortium of professionals for multidisciplinary assessments (government funded or subsidised).

Increased NDIS Access

• NDIS to remove the barriers to access for people with a diagnosis of ASD Level 1 or Asperger Syndrome.

• More recognition of complex needs of individuals on the autism spectrum with other disabilities or health related issues (not covered by the NDIS) that can affect the overall functioning of a person.

Reduce Barriers for Providers

• Reduction of administrative burden and cost on providers for NDIS registration.

Provide Services for Undiagnosed Individuals

• More supports available for undiagnosed or yet to be diagnosed individuals, and reduce reliance on a diagnosis to access services.

Funding for Flexible Delivery of Supports

• Government block funding to organisations to allow for flexibility in providing supports to meet individual complex needs, especially to support undiagnosed individuals.

• Provision of funding for providers to support non-NDIS participants on an ongoing basis not project based basis (such as ILC grants).

Holistic Family Centred Supports

• Government funding to support parents, carers, siblings and other informal supports.

• More understanding of the complexities of family dynamics, e.g. parents own health and disabilities, multiple children with disabilities, unemployment, isolation and lack of sufficient supports.

• Create additional category of NDIS funding (under individual NDIS plans) to provide ongoing support specifically for parents/carers, siblings and other informal supports.

Autism Specific Supports

• Government funding in the ACT for autism specific support to help navigate systems, including NDIS pre-planning support.

• Government funding to deliver workshops for newly diagnosed children over 7 years of age.

Advocacy Support

• More funding for independent support and independent advocacy is also needed to ensure that autistic people requiring support receive it and are able to successfully lead their lives in the community.

3

Inter-Jurisdictional Cooperation

• Increase collaboration between all levels of government and jurisdictions.

• Need for innovative multidisciplinary responses i.e. simultaneous support from both mental health clinicians and police, and the need for access to expertise around reasonable adjustments/disability expertise, when this level of support is required.

• Government funding to address the gaps in the current disability services system to provide support to families, as they need through their transitions.

Justice System Support

• Skill in trauma-informed approaches can be especially important. There continues to be a broad need for increased training for police and work with justice systems to ensure better outcomes for people with disability and autistic people.

Education Support

• Continued efforts are needed to ensure that teachers receive adequate training during their teaching degrees about the rights of autistic people and how to make reasonable adjustments to ensure equitable experiences of education.

• Continued effort is needed to ensure that schools are accountable for ensuring that autistic people have an equitable educational experience at all levels of the education systems.

• Funding and support for parent advocacy in the education system.

• Support for students to build non-academic skills such as emotional intelligence, social skills and friendships.

Employment Support

• Encouragement or incentives for employers to use different recruitment techniques.
• Encouragement or incentives for employers to offer work from home options and
• to foster ‘universal design’ in terms of the work environment and actual work practices.
• We propose that minimum disability employment quotas be considered.

Health Supports

• More supports needed around mental health, as people on the autism spectrum become adults, depression and anxiety become challenges to participate in education and employment.

• Hospitals need targeted funding internally to support equitable access to healthcare and equitable quality of services for autistic people and for other people with disability.

• Responsiveness to the needs of autistic people and people with disability needs to be considered and built into physical spaces, and also considered in advance in relation to the ways that healthcare services are designed and delivered, to ensure that autistic people have equitable healthcare experiences.

• Additional crisis level supports should be made available for autistic people who are experiencing complex co-occurring/intersecting life experiences not adequately served by other existing and siloed support structures/systems. Some of these experiences might include abuse, mental ill health, autism and homelessness for a non-NDIS participant, or justice system interactions/chronic illness and autism, etc.

Community Education

• Government funding for organisations to provide increased community education is required to address the social model of disability.

4

RSM Autism Community Need Analysis Report

In July 2019, RSM released the “Autism Community Needs Analysis Report” that it prepared for Marymead.

The key themes outlined in the report were: (p7)

• Mental health is 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 and 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.

• Support to navigate ‘the system’ – 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 had not applied for NDIS, with the majority stating a lack of information as the reason for their choice.

The primary challenges found in the RSM report for clients: (p48)

• Anxiety experienced by both clients and parents/carers
• Sensory issues experienced by clients
• Relationships particularly with respect to forming social and close personal relationships
• Transitions focusing on moving through life transitions and coping with unexpected change
• Education support needed in school, VET and tertiary systems
• Depression experienced due to multiple reasons. 5

Barriers to Accessing Supports

ASD Diagnosis

With the introduction of the NDIS, and the transition from block funding to individual NDIS funding, the acquisition of a diagnosis of Autism Spectrum Disorder (ASD) is necessary to access services such as the NDIS.

However, obtaining a diagnosis can be cost-prohibitive, and it can be very difficult to gain access to the right medical experts, especially for adults. Most ASD assessments cost around $2,000 or more.

The public system (serviced by the ACT Child Development Service) offers free diagnosis for children, but only up to 12 years. The advantage of the public system is that they use a multidisciplinary approach for ASD assessments, which is in line with the recommendations (detailed in the Autism CRC National Guidelines) to diagnose children who may have a more subtle or complex presentation of autism.

However, the amount of time taken to get a diagnosis (including time on waiting lists) can be between one and two years (RSM report, p33). The waiting time for a diagnosis with the Child Development Service is currently around 18 months. According to the respondents surveyed in the RSM report, private practitioners carried out the majority of ASD assessments as parents decided to pay for a diagnosis rather than wait for the public system and have their child miss crucial early intervention.

To access the public system a referral from a paediatrician is required, which can also add to the overall timeframe, as waitlists for paediatricians are lengthy too. To access a private psychologist, a referral from a paediatrician is also required for a Medicare rebate on the assessment costs (but only for children under 13 years of age).

For children under seven years of age, the situation is better as they can access the NDIS without a formal diagnosis of autism as long as there is a “developmental delay” under the Early Childhood Early Intervention stream. Having said that, a diagnosis of developmental delay may also have to be determined by a paediatrician. However, ABS statistics indicate that the majority of ASD diagnosis in the ACT are made between the ages of 7 and 14. This could be because a child needs an ASD diagnosis by the time they turn seven or they are no longer eligible to access the NDIS if they do not have a ‘permanent condition’. The later age for diagnosis may also be due to the broadening of the definition of autism in the DSM-5 and more ‘subtle’ presentations being identified as the social demands exceed the capacity of the child.

In addition, diagnosing girls is often missed due to an inadequate understanding of how it presents in females. Girls may not be diagnosed until they are in high school so they do not fit the age criteria to receive a free diagnosis and cannot receive early intervention.

For adults, there is no public system for a diagnosis or Medicare rebates available. Consequently, adults often cannot afford a diagnosis, especially if they are also unemployed. Later diagnosis and missing early intervention may cause problems as adult life demands increase.

Trends indicate that adult ASD diagnosis rates and female diagnosis rates are likely to grow and the waiting times for diagnosis are of concern to many. There appears to be a growth in the number of

6

adults waiting for diagnosis or diagnostic review. Diagnosis can be prohibitively expensive for people on low incomes.

It is imperative that diagnostic testing is made accessible both in terms of cost and also in terms of access to specialists with the ability to diagnose for those that want or need to pursue that pathway.

Given that diagnosis is needed in order to gain access to supports such as the NDIS, these barriers can have a profound impact.

NDIS Access

Furthermore, a diagnosis of ASD is not necessarily sufficient to access the NDIS. The NDIS focus on the ASD level of a potential participant can be a barrier to accessing the NDIS. For ASD Levels 2 and 3, there is direct entry into the NDIS but for ASD Level 1, there is typically more evidence required.

ADACAS works with autistic people who are seeking entry to the NDIS, as well as those appealing NDIS decisions. Whilst the NDIS Operational Guidelines, List A – Conditions which are likely to meet the disability requirements in section 24 of the NDIS Act currently states that people with a diagnosis as follows are likely to meet the NDIS entry criteria:

Autism diagnosed by a specialist multi-disciplinary team, paediatrician, psychiatrist or clinical psychologist experienced in the assessment of Pervasive Developmental Disorders, and assessed using the current Diagnostic and Statistical Manual of Mental Disorders (DSM-V) diagnostic criteria as having severity of Level 2 (Requiring substantial support) or Level 3 (Requiring very substantial support).

We are conscious that people with Autism Level 1 diagnoses often still require supports that are not currently available outside of the NDIS. The DSM-5 defines Level 1 as, ‘Requiring Support’. People diagnosed as ASD Level 1 can have their applications rejected or they are reluctant to apply in the first place. The RSM report found that of the respondents who were not applying for the NDIS, 39% stated that it was because they were not sure that they qualified.

The focus on the levels shows a lack of understanding from the NDIS, despite the fact that approximately 30% of NDIS participants are on the autism spectrum. It is understood that the levels can fluctuate over time and vary depending on the situation. Additionally, the ASD levels were never intended as an indicator to inform funding and the levels are supposed to be given for each of the two main criteria and should not be combined into one overall level.

The Diagnostic and Statistical Manual of Mental Disorders Version 5 (DSM-5) (p51) states:

The severity specifiers may be used to describe succinctly the current symptomatology (which might fall below level 1), with the recognition that severity may vary by context and fluctuate over time. Severity of social communication difficulties and restricted, repetitive behaviors should be separately rated. The descriptive severity categories should not be used to determine eligibility for and provision of services; these can only be developed at an individual level and through discussion of personal priorities and targets.

Additionally, in our experience, NDIS assessors are not always skilled at recognising the compounding impact that an Autism diagnosis and other co-occurring disabilities/mental ill health/health issues can have. There can be people with quite significant combined impact of

7

disability, who are unable to access the support that they require, when other conditions like mental health are either considered temporary, or their permanence cannot be easily proven, and where the compounding impact for an autistic person is not adequately recognised or supported.

Health/disability/other system interface issues can mean that the NDIS and health system, or other systems, are each arguing about where responsibility sits to offer support to an autistic person, all whilst there is a person not receiving the support that they need.

A much greater level of support is also needed for autistic people who are NDIS participants, but where there are co-occurring health or other issues where support is not being offered via the NDIS.

Additionally, NDIS planners have varying levels of knowledge and skill in responding in a sufficiently tailored way to the needs of autistic individuals. The NDIS needs to be able to work with the diverse needs for autistic individuals and to provide funding that is sufficiently flexible to meet the varying needs of different autistic individuals.

A much greater level of support is also needed for autistic people who are not NDIS participants. This support is likely to look different for each individual, but could include things like increased access to targeted social support, support to combat the impacts of stigma/discrimination, or mental health support or advocacy if these supports are applicable in the circumstances.

Service Provider Access

Once a person receives NDIS funding, there may be another barrier to access services as the demand outweighs capacity of many service providers. Marymead Autism Centre manages a Provider Database and contact is made with providers regularly to find out current capacity. There are few providers that are currently taking new clients, some have waitlists that can take months and some providers have closed their books due to the high demand.

Additionally, the administrative and financial cost to providers to be registered with the NDIS has seen many providers choosing not to register as NDIS providers, or deregistering with the NDIS. This has a great impact on NDIS participants who have their NDIS plan funds as ‘agency managed’, which means that they can only use NDIS registered providers, and their options for service providers are reduced.

8

Barriers to Building Independence

Complex Systems

The present structures of systems and supports are failing many autistic people. Positive participation in the community demands that people on the autism spectrum are not disadvantaged by the structures and systems due to a lack of understanding by the people that work in these systems such as justice, education, employment and health.

Families with complex circumstances and support needs often require social work support beyond the scope of NDIS supports coordination. Families report that there needs to be greater cooperation and liaison between jurisdictions of health, education, housing, mental health, justice and out of home care.

Carers often feel overwhelmed by the NDIS system and navigating the service provider networks. Many carers do not access any carer supports.

Rights and Advocacy

Support must also be available to people on the autism spectrum to understand their rights and advocate for themselves. There can be confusion with how all of the systems work and how they work together. For example, a person may worry that they will lose their Disability Support Pension if they access the NDIS. Liaising with government bodies and even filling out forms can be anxiety provoking for some adults on the autism spectrum.

Access to independent advocacy can be a vital safeguard for autistic people across an array of different rights and areas of life. Whilst independent advocacy can make an immense difference – the demand on independent advocacy exceeds supply and consequently does not meet the existing need.

More funding for independent support and independent advocacy is also needed to ensure that autistic people requiring support receive it and are able to successfully lead their lives in the community.

Justice

In line with the ACT Disability Justice strategy, continued work is needed to ensure that police and justice systems respond appropriately and supportively towards all people with disability including autistic people when appropriate.

At present, when there are police or justice system interactions, our observation is that responses to autistic people vary greatly depending on the skill and experiences of the specific police officers, or justice officials involved. Skill in trauma-informed approaches can be especially important. There continues to be a broad need for increased training for police and work with justice systems, to ensure better outcomes for people with disability and autistic people. There needs also to be ways to ensure that police can tap into relevant autism expertise when this is required.

Independent support, whether via mechanisms such as the Witness Intermediary Scheme, or independent advocacy can be very important.

9

ADACAS strongly supports the need for innovative multidisciplinary responses i.e. simultaneous support from both mental health clinicians and police, and the need for access to expertise around reasonable adjustments/disability expertise, when this level of support is required.

Education

Autistic people have a right to an equitable experience of education, and to any reasonable adjustments that are required to ensure that this occurs. Poor educational experiences can have lifelong impacts in terms of career pathways / future employment etc. The RSM research found that 86% of children report having difficulty at school.

Continued efforts are needed to ensure that teachers receive adequate training during their teaching degrees about the rights of autistic people and how to make reasonable adjustments to ensure equitable experiences of education.

Continued effort is also needed to ensure that schools are accountable for ensuring that autistic people have an equitable educational experience at all levels of the education systems.

In addition, many families also report that the transition after secondary schooling ends can be very difficult to adjust if there is no direct pathway to further education or employment.

Employment

Ongoing efforts are needed to ensure that autistic people have equitable access to employment, and that they receive any reasonable adjustments they require in their workplace. According to the ABS, 70% of people on the autism spectrum are unemployed (RSM report, p 13). Lack of further education and employment can affect self-esteem and confidence, which can further affect future success in education and employment.

We suggest that government employers lead the way in ensuring that people with disability, including autistic people, receive employment opportunities. The recruitment process is problematic for people on the spectrum who find it difficult to perform well in interview situations and may not want to disclose their diagnosis.

Other barriers to being ‘employable’ can be due to anxiety with driving and public transport, and as a result, getting to the workplace can be problematic if public transport is not available at the required time or funding available for transport is insufficient.

In the workplace, sensory issues can be problematic for people on the autism spectrum as well as organisation and executive functioning and the social requirements to interact and socialise with other staff.

Encouragement is needed for employers to use different recruitment techniques and offer work from home options and other accommodations, foster ‘universal design’.

We propose that minimum disability employment quotas be considered.

10

Health and Community Care

Autistic people have a right to equitable access to and equitable quality of healthcare. However, when someone is unwell/ hospitalised, even if they wanted to, the person might not be well enough to be able to self-advocate and to request any reasonable adjustments that are needed to ensure equitable experiences. Some people are fortunate to have trusted friends or family or other informal supports that can assist and advocate with regards to the wishes of autistic people when this is needed. However, many people do not have trusted people who will uphold their wishes.

Hospitals can at times be disorienting and difficult places for autistic people. Autistic people who experience sensory differences: talk of sensory overload - feeling barraged by questions in a physical environment that can feel loud and distressing, electronic noises, glaring fluorescent lights, colours that they find overwhelming. In addition, the structure of how hospitals operate can have impacts for others.

Hospital staff have widely varying levels of knowledge, experience, skill and willingness to ensure that any needed reasonable adjustments needed by autistic people and/or others with disability, are made. Hospital staff are also frequently under immense time pressure.

As such, even when reasonable adjustments are requested, they are not always received, thereby resulting in people either not receiving necessary care, or receiving poorer quality care, which in some situations can also mean an increased chance of negative health outcomes. Autistic people have inequitable healthcare experiences and experience discrimination when needed reasonable adjustments are not made. One of the potential reasonable adjustments suitable for some autistic people might be access to supported decision-making. Hospital staff rarely are in a position to have both the time and expertise to ensure that supported decision-making processes occur.

Hospitals need targeted funding internally to support equitable access to healthcare and equitable quality of services for autistic people and for other people with disability.

Responsiveness to the needs of autistic people and people with disability needs to be being considered and being built into physical spaces, and considered in advance in relation to the ways that healthcare services are designed and delivered to ensure that autistic people have equitable healthcare experiences.

Additional crisis level supports should be made available for autistic people who are experiencing complex co-occurring/intersecting life experiences not adequately served by other existing and siloed support structures/systems. Some of these experiences might include abuse, mental ill health, autism and homelessness for a non-NDIS participant, or justice system interactions/chronic illness and autism, etc.

Additional research and supports are required for autistic people who experience co-occurring mental ill health. This is especially needed for conditions which are episodic, and where there are already known gaps in services available i.e. support for people with complex trauma/post traumatic trauma experiences, or conditions that are temporary or difficult to prove as being permanent, such that it can be complex for people to access NDIS supports.

All medical and allied health workers should receive adequate education about the rights of people with disability (including the rights of autistic people and how to work with people with disability, including autistic people) throughout their studies.

11

Gaps in Government Funded Services

Services for Undiagnosed Individuals

Currently, there are very limited services for individuals who are undiagnosed or undergoing the diagnostic process. For example, a child over the age of seven cannot access the NDIS without an ASD diagnosis or receive additional support at school as the school can only apply for funding with a diagnosis. In addition, the parent is not able to access supports needed, such as respite, to be able to continue to provide the current level of support for their child without having an impact on their own mental health. This is especially problematic for single income families who cannot afford to pay for services and therapies out of their own funds while waiting to receive government funding.

Undiagnosed adults (or those with a diagnosis of ASD Level 1 or Asperger Syndrome) cannot access NDIS funding or the Disability Support Pension. Yet they may lack sufficient employment, have issues accessing public housing, cannot afford to pay private rentals and are at risk of homelessness. Not having basic needs met, their mental health suffers which can make advancement out of their current circumstances even more challenging.

Flexible Delivery of Supports

The majority of clients seek emotional support to process, consider and discuss the information available and the choices they face. Often times, parents and carers who have sought support from the Autism Centre in the past, make contact repeatedly throughout the life stage transition phases of their/their child’s journey with autism. The RSM research found that nearly 30 % of survey respondents ‘don’t leave the house often’, so there is a need for flexible and responsive support services that include home visits too.

The Marymead Autism Centre is aware that the provision of information and knowledge can empower people and as such, in delivering information and referral services under the Information, Linkages and Capacity Building (ILC) funding (which we no longer receive), we have been adaptable and flexible in the ways we have formatted and presented information, and worked with our clients. We have formed effective professional relationships with consumers through which they convey their wealth of knowledge about ASD and opportunities within the community.

Our model has also been continually adaptable and flexible in the NDIS and ILC environment. We have continued to focus on the expressed needs of the local autism community, through the input of

the consumer-based Autism Centre Advisory Committee, the RSM Canberra’s Autism Community

Needs Analysis project, and the input of consumers, staff and community stakeholders.

Holistic Family Centred Supports

Marymead is a family focused organisation and believes in supporting the entire family (and other informal supports) as a way to support individuals. As NDIS plans are for individuals, there is limited family support funded for parents, carers and siblings. An NDIS participant can use part of their therapy budget (Improved Daily Living) for “training for carers/parents”, however this would reduce the amount of therapy that the individual could access if used for their parents.

Organisations could receive block funding to provide these services or there could be the creation of an additional category of NDIS funding (under individual NDIS plans) to provide ongoing support to

12

parents/carers, siblings and other informal supports. Line items under this category could include counselling, social work, support groups, training, domestic assistance and respite. This funding would be specifically for an NDIS participant’s informal supports and would not reduce the overall amount of funding for the individual participant, and would not require excessive negotiation to be able to be granted.

It is important for an NDIS participant’s informal supports to be supported in order to have the capacity to continue in their role. When parents and siblings have an understanding and acceptance of autism, they can embrace the differences and build healthy self-esteem for the family member on the autism spectrum. Self-esteem can be typically lower for people on the autism spectrum and a healthy self-esteem is a powerful indicator of positive mental health outcomes.

It should also be noted that many parents of children on the autism spectrum are also on the autism spectrum themselves but they may not be receiving NDIS support themselves or be formally diagnosed. There may be several siblings on the autism spectrum too. Therefore, an approach that focuses on the entire family dynamic is necessary to address the complexities of the family and everyday life challenges.

Autism Specific Support

Marymead Autism Centre helps to make sense of the autism ecosystem and is the first point of call to access information and referrals. However, the Marymead Autism Centre no longer receives funding to provide face-to-face support for families navigating autism supports such as the NDIS and NDIS pre-planning support. Support for navigating different systems before NDIS funding is available is highly valuable. The pre NDIS support available from the Local Area Coordinators in the ACT, EACH and Feros Care, may not necessarily be suitable to someone on the autism spectrum. The Marymead Autism Centre was funded in the past to provide NDIS pre-planning support that was autism specific, this involved assistance to apply for the NDIS, goal setting with families and attendance at NDIS planning meetings.

Currently, there are Early Days workshops available for parents/carers of children under 6 years recently diagnosed or undergoing the diagnostic process. However, this government funded program only caters for parents of children younger than 7, and will not be continuing beyond June 2021.

A gap currently exists for workshops for parents and carers of children diagnosed over 7 years of age. ABS statistics indicate that the majority of ASD diagnosis in the ACT are between the ages of 7 and 14 (RSM report, p11). This may be due to requirements of entry into the NDIS where an ASD diagnosis is only required after the child is 7 years of age. Therefore, many parents are missing information and opportunities to network with other parents since their children are getting an ASD diagnosis after 7 years of age, and the only government-funded workshops are for children 6 and under.

School Support

Support is needed for families, teachers and students. The Positive Partnerships program is useful in terms of training for teachers and parents. However, many parents request support to advocate for their child at school. Providing individual advocacy is beyond the scope of the Positive Partnerships program.

13

Support required at school goes beyond having a Learning Support Assistant in the classroom, as children on the autism spectrum struggle with unstructured playtime and friendships. Students on the autism spectrum can be supported socially by helping their peers become more accepting of autism and promoting inclusion in the school. A program that address these difficulties is Circle of Friends. This program is not covered by the Education system or individual NDIS plans so funding for this program can be problematic for families as a fee-for-service offering.

Community Education

Increased community education is required to tackle the social model of disability, if there was more understanding, compassion and accommodations in the community, some of the issues faced by people on the autism spectrum would be minimised. The Marymead Autism Centre Access Days program aims to increase community understanding and acceptance. Training in autism is provided to business wishing to participate. This has been previously funded by government grants but now it is only funded by fee-for-service.

14

About the Marymead Autism Centre

Marymead Autism Centre celebrates diversity, promotes awareness and inclusion, and supports people on the Autism spectrum and their families.

Marymead merged with Autism Asperger ACT (AAACT) on 25 August 2016 and created the Marymead Autism Centre. AAACT had been operating for approximately 40 years whilst Marymead had been operating for over 50 years, to the ACT and surrounding NSW region.

Marymead Autism Centre provides support for families in the ACT and southern NSW (e.g. Yass, Queanbeyan and Goulburn). Marymead is registered with the NDIS to provide services in the ACT and NSW. Marymead delivers services in the Autism Centre to over 2,000 people per year including 468 registered participants of support and social inclusion groups.

Current services offered by the Marymead Autism Centre include:

• Amaze Autism Connect – information and referral via phone, email and live chat (no face to face support)

• Social and support groups o Women’s support group o Men’s support group o Parents & Carers’ support group o Partners support group o Lego social group

• Dungeons & Dragons Social Group

• Early Days Workshops – only for parents/carers of children 6 years and under

• NDIS Support Coordination

• Training and consulting – for schools, Community organisations, workplaces

• Access Days

• Circle of Friends program

• Marymead Autism Centre website, newsletter and Facebook page

• Provider database – lists all providers relevant to someone on the autism spectrum not just registered providers as the NDIS Provider Finder

• Autism specific library. Funding for these services currently offered come from these different funding sources:

• Federal government grants (Autism Connect, Early Days)

• Brokerage from other ACT NGOs

• fee-for-service (training, consulting, Access Days, Circle of Friends)

• NDIS plans (Support Coordination).

• donations (Dungeons & Dragons)

• volunteers (support groups, library). 15

About ADACAS

ADACAS (ACT Disability Aged Carer Advocacy Service) is a non-government human rights organisation.

ADACAS Vision is ‘a community in which everyone may exercise their rights and responsibilities, lead lives of value and dignity, and pursue their dreams’. Our mission is ‘to assert, promote and protect the rights and responsibilities of people with disability, people who are older and their carers’.

In the ACT, we provide free advocacy and information to:

• people with disability

• people experiencing mental ill health

• older people

• carers. ADACAS also provides free advocacy and information to people with disability in:

• Shoalhaven

• The Eurobodalla Hinterland

• Batemans Bay

• Broulee – Tomakin

• Moruya – Tuross Head. 16