Submission No 28

INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM DISORDER

Organisation: City of Melton

Date Received: 4 March 2016

Submission S028 Received 11/03/2016 Family and Community Development Committee

Inquiry into services for people with autism spectrum disorder

Submission to the,

Parliament of Victoria Family and Community Development Committee

February 2016

Prepared by: Warren Penna Metro Access Officer

Melton City Council redacted

1. Executive Summary

Melton City Council’s submission has been developed through consultation with 150 local parents and carers of people with Autism Spectrum Disorder (ASD) in February 2016.

The consultation sought opinion on the availability and adequacy of services for people with ASD across nine key areas. A detailed synopsis of the feedback received has been included in this submission, refer Attachment 1. The nine key areas considered were:

• Education
• Housing
• Workforce Issues
• Disability Service Providers
• Families and Carers
• Health Services
• Integration across Governments and Services
• Community Challenges
• Accessing Services and Quality of Service

The most significant area of concern for parents was the inability of the Education system to support students at all levels with ASD to reach their full potential. Parents indicated that from their experience the system was not flexible and that teaching staff were under resourced and not appropriately trained to support students with ASD.

Furthermore there are no specialised ASD schools within the municipality and parents either have to choose Melton Specialist School (generalist disability school), a mainstream school or leave the municipality. In addition parents were frustrated at the barriers as indicated above and the impact on their child’s education but were able to provide examples of best practice that could be introduced to all schools across Victoria. These examples include the ICAN Network Mentoring Program and the Polytechnic Work Education Model.

In addition to the comments relating to the Education System, parents and carers of people with ASD told us:

• Affordable, accessible and safe housing needs are not being met within the Western Suburbs of Melbourne. There is a need for homes to be better matched and suited to individual’s circumstances, including people from CALD backgrounds. People with ASD have very limited information on options available and limited choices.
• Training and qualification standards for the disability support workforce is inadequate for example Disability Certificate III and IV do not cover ASD in-depth and should include training on Positive Behaviour Practices.
• The significant workforce challenges for people with ASD are:
  • limited availability of disability supported employment funding
  • poor career planning by schools and the capacity of parents to support this
  • lack of education and understanding of the challenges faced by people with ASD amongst employers and Disability Employment Services. These challenges are quite unique and different to people with other disabilities
  • lack of transport to and from work programs particularly in and around the Western Suburbs
• Disability Service Providers could improve services by being more adaptable, tailored and flexible. In particular there was a need for increased social skill development, career planning and travel training programs. Finding a quality Disability Service Provider that

specialises in ASD is a challenge and there was a feeling that the ‘better services’ were located in the Eastern Suburbs of Melbourne.

• Enhanced carer support programs including peer support, information and crisis intervention during periods of high stress is required.
• All Health Services must have a role to play in debunking myths and facts for parents and the wider community around ASD, in addition they told us:
  • quality services in the Western Suburbs are lacking including availability of specialist care such as Speech Pathology and Occupational Therapists, children’s overnight respite, family support and counselling services.
  • parents and carers should have greater input into planning and goal setting for the person they care for.
  • more community support and information is required regarding mental health issues, such as anxiety, depression and obsessive compulsive behaviours.
  • there is inconsistent support services across the ageing spectrum for people with ASD
  • funding to support access to health services is limited
• Some Government Services would benefit from greater collaboration with the Disability Sector to enhance workforce training about the needs of people with ASD for example the Victorian Police force and Education system.

2. About our City

The City of Melton is one of the fastest growing municipalities in Australia. The City embraces a series of townships and communities, the larger activity centres being in Caroline Springs and Melton township. Caroline Springs is just 19 kilometres west of Melbourne’s CBD and Melton township is 35 kilometres west of the CBD.

The official City of Melton total population is 134,967.

During 2013/2014, the City of Melton had the fourth fastest growth in Victoria (4.0%). Between 2001 and 2014, the estimated residential population of the City more than doubled. Population projections indicate that the City’s population will be more than 315,908 by 2036, making it almost the size of the Canberra today.

Population Growth Snapshot 2013/2014:

The municipality is becoming increasingly culturally diverse. We welcome people from around the world and are enriched by cultural and linguistic diversity. The City of Melton is the place that more than 30,000 immigrants presently call home, representing more than 130 different nations.

3. Disability Profile

In 2011, the Census inquired as to whether respondents had a disability requiring them to obtain daily assistance with mobility, communication or personal care. Such individuals were considered to have severe or profound disabilities. In the City of Melton, based on 2011 Census, 4,491 residents, or 4.4% of the population, indicted that they had a severe or profound disability.

The data indicates the City of Melton is one of the top eight local government areas in Victoria supporting residents with a disability. The 2011 Census and population forecasts prepared by the Department of Planning and Community Development project that the City of Melton will face significant increase in residents with disabilities into the future.

Distribution of people with a severe or profound disability is not consistent across the City of Melton. The proportion of people with a disability requiring them to obtain assistance with a core activity is higher in Melton Township (5.6%) than in Eastern Corridor (3.1%). In Melton Township 2,608 people reported needing help in their day-to-day lives due to disability. In Melton East, 1,756 people reported needing help in their day-to-day lives due to disability.

Melton City Council has no accurate data on the prevalence of ASD within the municipality, but we do know that demand for services and information is rapidly increasing as indicated by the fact community based ASD information sessions and forums fill to capacity.

4. Legislative and Policy Framework

The current legislation and policy context relating to people with disabilities, including people with ASD in Victoria provides clear context for our municipality.

• The Disability Act 2006 is a guided by principles of human rights and is to enact legislative scheme for persons with disability which reaffirms and strengthens their rights and responsibilities and which is based on the recognition that this requires support across the government sector within the community.
• The United Nations Convention on Right of Persons with Disabilities was sanctioned in 2008 by Australia supports full participation, equal opportunities, equity and inclusion of people with disabilities
• The Victorian Charter of Human Rights and Responsibilities Act 2016 support and protect the civil and political rights of all Citizens of Victoria.
• The Victorian State Disability action Plan 2013-2016 outlines the Victorian Government’s approach to reducing the barriers faced by people with a disability to accessing education, employment, and other services within the community. The plan is about improving public spaces, planning, transport and the justice system, to make Victoria a welcoming and accessible place for all Victorians. i

The City of Melton Council Plan 2013-2017 is an overarching planning document for the Melton Community. The Council Plan is prepared in accordance with the Local Government Act 1989. Although the Council Plan describes our strategic direction up to 2017, we recognise the importance of being flexible and adapting to new challenges.

Council Plan is supported by a number of supporting plans (but not limited too):

• Municipal Public Health and Wellbeing Plan 2013-2017
• Municipal Early Years Plan 2014-2017
• Community Learning Plan 2015-2018
• Disability Action Plan 2013-2017

i Disability Act 2016 Act No 23/206

Attachment 1

Community Response to Key Area Questions

Background

On 18 February 2016 Melton City Council in partnership with Career Education Association of Victoria hosted a forum for parents and carers - Unpacking Career Options for Young People on the Autism Spectrum. The forum was attended by 150 people and was an excellent opportunity for Melton City Council to ask key questions to support the inquiry into services for people with autism spectrum disorder. Below are the questions asked along with the corresponding thoughts and feelings of those who participated.

Melton City Council acknowledges that these comments are the views of individuals and may not reflect the community as a whole.

1. Education

What is the accessibility to, and quality of the education services provided to people with autism?

Comments:

• There is a strong support and need for an Autism School in Melton, both primary and a secondary school
• There is limited driver education support for people in the Western Suburbs for people with ASD to obtain a Victorian Drivers Licence and no services to help them educate and practice over an extended period of time. A Drivers Licence would be very beneficial for some people to achieve life goals and independence.
• Funding to support parents education, so parents can afford to attend relevant workshops, seminars and forums.
• There is no Arts Schools in the West for people with ASD
• It would be very beneficial to have more free forums/workshops to carers, families and people with ASD, to showcase what is possible
• The Education System is not flexible enough for people with ASD. There is no ‘one size fits all’. Schools are very resistant to the concept of flexibility with their programming
• People with ASD are not supported to achieve year 12 (HSC) over a number of years, in particularly they are asked to sit compulsory subjects such as Math and English each year. This does not meet the needs or learning styles of ASD students. Subjects should be attempted over a number of years
• Schools need to be more flexible with students completing their studies. It is unfair for kids with ID’s to have to learn at the same pace as other students, they need much longer time at school, past the age of 18 years
• Parents should receive more information on where their child’s funding can be used. Schools hide information from parents, they don’t inform them of what funding can be used for
• Schools are not very accepting of flexible learning options. Eg. Shorter days/less days per week to assist with sensory processing and emotional coping capabilities, which also reduces the likelihood of students being bullied
• There should be options for students to enrol in two schools, to meet their individual needs eg. a student may need social support at a specialist school and Math and English at mainstream school
• Being bullied at school is an ongoing issue for many students with ASD
• The ICAN Network mentor project (lead by Chris Varney) should be introduced into all schools. http://icannetwork.com.au/

• There is a need for more education and understanding about behaviours. Some behaviours will present at home as a result of and incident at school and vice verse
• Staff in the education system are not well trained to support students with ASD. There should be more professional development opportunities to not only support but to deal with the stigma associated with ASD for teachers
• There is a need for a Secondary School that focuses on ASD in Melton
• The TAFE system is not flexible enough, my some has challenges around change. I asked the local TAFE and his school if he could attend TAFE in the last year of his school – so transition into a new place (TAFE) would go smoothly. I was told that students cannot be enrolled in TAFE if they are still at school (outside VCAL). This needs to change
• There is a need to deliver more targeted tailored programs for students with ASD. Peer mentoring programs, imagination programs and opportunities to talk about their passions and obsessions
• Parents would like some choice and more satellite transition schools so they can integrate students with ASD into mainstream schools.

How inclusive is the education sector, at all levels, to people with ASD? What are the resource limitations?

Comments:

• Melbourne Polytechnic work education model is a great example. The TAFE system should embrace the program as best practice http://www.melbournepolytechnic.edu.au/
• Schools need to consult parents better on how to allocate ASD funding
• Schools are very quick to say that we need to move our children to independent schools as they don’t have the funds to organise individual programs and cater to our children’s needs
• The Catholic education system is not flexible. – My daughter who attends one these schools that runs an IB curriculum, where it is compulsory to study Chinese and French, which was beyond my daughter. There was no alternative, she was eventually taken out of some classes for additional literacy on an informal level
• Teachers need to have a better understanding of what ASD really is, they just aren’t equipped. It would appear that the training is insignificant in this area. And older teachers that have been in the sector for many years have not been given updated information and personal development in this area
• ASD training at teachers college should be compulsory before graduation
• Teachers need to understand that ASD is for life, not something the child can be ‘trained out of them’
• Teachers need to be equipped to understand ASD issues to better support both parents, students and other teachers. Maybe they should all do further training or work placement in a Special School to gain a deep understating of people’s needs.
• Career Pathway teachers in mainstream schools spend little or no time with kids with disabilities or ASD. It is very unequable
• Primary Schools often don’t have the skills to teach children with ASD social skills, yet some of the students with high IQ’s don’t fit the special school model, is a very grey area for parents to find support for their child
• People with high IQ’s struggle to fit in socially at mainstream schools
• Kids with high IQ’s on ASD are not guaranteed academic success. They need allot of assistance from parents and this should shift to the education system
• There are not enough Teachers Aids to support students in their learning’s at school
• The structure in Catholic Schools often attracts families with ASD to enrol and they should be supported and funded to continue.
• The funding process should not be made harder and less achievable for High School as it appears to be now
• School applications should be less about testing scores and more about a child’s challenges and difficulties on an individual basis

• Schools are not resourced enough to mange mental health such as anxiety in people with ASD
• Teacher Aides supporting students with ASD should be more flexible. It is important to have assistance at the start and end of the school day, not just being allocated by subjects
• Public Schools reject funding for students and won’t adapt their programs. You are told to go elsewhere (to other schools)
• There is limited support in the education sector to support students to transition to employment
• There are resistance to develop individual learning plans at Special Schools
• Parents need more information on what their child rights are within the school system, so they can advocate for their child more effectively.
• Special and Mainstream Schools need to step-up and challenge students to achieve their full potential.
• Special Schools are not catering for individual strengths rather catering for their disabilities

2. Housing

Are the accommodation needs of people with ASD being met? What models of housing represent best practice, and how developed is the sector in providing sufficient and appropriate housing options?

Comments:

• More affordable housing is needed in the Western Suburbs for people with ASD
• More supported accessible housing - CRU’s required
• Funding for ‘life skills’ to assist people with ASD to live independently and connections with the community
• Better information for foster family/homes who care for children with ADS, including understanding CALD communities is required
• Suitable housing for people with ASD from CALD backgrounds – ie Muslim
• More appropriate housing (CRU’s) that match residents that can relate to one another. For example: age, interest etc - to create a more positive home environment for people with ADS. Stop housing people with ADS with people with complex disabilities.
• More transition units/houses to achieve independent living
• People with additional needs are not able to flee domestic violence as refuge shelters are not inclusive enough or difficult to find in the Western Suburbs.

3. Workforce Issues

How well equipped is the workforce across the sector in providing informed, compassionate, and professional service to people with ASD?

Comments:

• Better connections between schools and industries who are understanding and open to support young people with ASD
• For people with ASD, extend supported wages to include apprenticeships
• Extend supported wage to beyond 8hr per week
• Explore career options in technology, tap into and provide training based on strengths of people with ADS – Provide meaningful job opportunities
• It’s important to get industry leaders to channel career pathways for high functioning ASD students – each child has unique and specific skill sets which should not be wasted
• More mentoring opportunities for ADS adolescence.
• There is no incentive to employ people with ADS over other candidates. We need to sell the advantages to the employers

• More education and awareness amongst employers in the community how to support people with ADS and to encourage employers to speak up and ask for support
• People with ASD are challenged to participate in work experience programs due to the lack of travel training or public transport options in the Melton Area.
• There is need for more career planning time allocation for kids with ASD. Complex planning is required and this takes time and patience.

What are the training needs and qualifications necessary to ensure a skilled workforce?

Comments:

• Workers are not trained well enough to understand the needs of people with ASD. There is a level of ignorance and fear around ADS
• There is poor training within the Disability Certificate III and IV on ADS and positive behaviour practices.

4. Disability Service Providers

Does the disability service sector provide sufficient and quality tailored services to people with ASD in our Community?

Comments:

• Day Services should be accountable in promoting and delivering individualised pathway planning for all levels of ability, not just for independent young people. There should be meaningful goals that are regularly reviewed.
• There is a need for cooking classes to teach independence
• People with ASD who have an intellectual or dual diagnosis are not supported well in the current system. They do not fit in any particular box and services are not trained or equipped to deal with the mix of needs
• There a lack of social events to bring adults/teenagers together with their peers
• There is confusion around the ‘Helping Children with Autism’ funding and parents believe service providers charge them higher rates than other.

What is the level of unmet demand for these services?

Comments:

• Finding a service that understands how to work with people with ASD in the Western Suburbs is a challenge for parents. Parents report that many of the better services are in the Eastern Suburbs.
• Day Services in the West Suburbs have very limited or no access to speech psychologists to support the individuals with ADS.
• There is an increasing need for advocacy support in the Western Suburbs.

How well do these services perform in meeting the expectations of their clients?

Comments:

• Disability Employment Services may be better served if they were run by people who understood disability and ASD challenges rather than being run by ‘business people’

5. Families and Carers

What are the challenges for families and carers of those supporting people with ASD?

Comments:

• Some families report that one of the parents must give up work to assist and support the child/student with ASD with emotions, anxiety and access to services. Loss of income and specialist costs adds to stress of families. Further financial assistance would help.
• Stress can lead to family violence
• There is a need to fund more local community information forums/workshops on ASD challenges to families and cares
• ASD carers groups were difficult to find
• ASD carer group funding is limited or nonexistent.

6. Health Services

Does the health system provide adequate access, information and support to people with ASD and their families in our community?

Comments:

• There is a need for more information on myths and facts regarding diets, immunisations and other elements that parents may be working through to get the best health outcomes for people with ASD
• There is a greater need to include health providers and educators in the planning and development of individual goals for people with ASD – Care Team planning
• Mental Health Services should be more inclusive of youth/people with ASD with a need to be either specific or customised to ASD characteristics and mental health education
• Further mental health support is required to address anxiety, depression and obsession in the western suburbs. There are very few services, especially for adults to access. They are also expensive, if you can find the right service
• Parents may have been advised that their child may have ASD and are referred to Melton Health (or Sunshine Hospital depending on location) for a formal assessment. Parents are then place on a wait list and can be waiting up to 18 months or more for an appointment. Unless the child has a formal diagnosis they are unable to access Helping Children with Autism (HCWA) funding. For many families the only other option is to pay for private practitioners to conduct the required assessments at enormous cost to the family
• There are also situations where parents may be referred to the developmental Clinic at Melton Health for an assessment. After a long wait for an appointment, the clinic may then refer their child to the Autism Assessment Clinic where they are place on another wait list. This means that families spend onerous amounts of time on waiting lists
• There is also a discrepancy between the requirements of who can diagnose a child with ASD for Commonwealth funding purpose and for funding within the State Government school system. Many children have been given the diagnosis of ASD by a Paediatrician and Speech Pathologist or Occupational Therapist. This will enable the family to receive HCWA funding. To get funding in a Government school the child must also have the diagnosis confirmed be a Psychologist. Some families may not be involved with a Psychologist and the Department of Education (DET) do not fund schools to provide this support documentation. This requires families to source a private Psychologist to confirm the diagnosis at great expense to the family. This place enormous and often unnecessary stress on families.

What is the accessibility and availability of quality assessments and diagnoses of people presenting with ASD in our community?

Comments:

• More support is required for people aged 7+ years. There appears to be some support in the early years, then less support as the person enters youth and adulthood. If your child is diagnosed later in life there is less opportunities for support
• It is difficult to find professionals in the Western Suburbs who support ASD such as -speech pathologists. Parents are travelling to the Eastern Suburbs for quality services.
• There is a demand for more ADS screening programs for toddlers
• There is a need for a holist network to be in place for any child/person from the first point of diagnosis with ASD
• Funding is deficient and should be also focused on developing strengths, and true support needs. Funds need to be maintained to support and build on the successes to encourage more outcomes
• Services are not affordable

7. Integration Across Governments and Services

How well are services across the different levels of government integrated?

Comments:

• There are challenges for Government Organisations to understand cultural needs of the CALD community with ASD. Information needs to be consistent and shared.
• There is a need for wider education of the Victorian Police to understand the challenges faced by people with ASD
• There is confusion about the NDIS eligibility for people with ASD and this needs to be resolved and included.
• At a Local Government level there could be more time invested in local libraries delivering sensory programs and sensory toys to borrow.

Is there collaboration and appropriate linking up between service providers, particularly in relation to transitions from one area of the sector to another?

Comments:

• Parents would like to hear the outcomes of the Parliamentary Inquiry into Service for people with ASD
• Multicultural and ASD/Disability services would benefit from closer collaborations together.
• Local Government is well placed to deliver community information session on ASD and is doing it well through the Metro, Rural and Deaf Access (Community Building Program)

8. Community Challenges

What are the broader challenges that face the community to meet the needs of people with ASD?

Comments:

• There is a need for more education of the whole of community on the challenges of living with ASD. For example some business and restaurants are challenged with people that may present ASD traits, not knowing how to respond
• There are opportunities for growth areas, such as Melton to work with new and emerging communities on ASD challenges.

9. Accessing Services and Quality of Service

What is the experience of people with autism spectrum disorder (ASD), their families and carers in accessing services, information, advice and support?

Comments:

• Greater access to case workers to help navigate through all the options - from medical services to carer organisations to Government Assistance etc. It is very difficult to know the right agencies to access and to utilise their expertise and funding. It’s very confusing
• There is a significant need to be able to access specialist services for families unable to cope with significant behaviours 24 hours a day / seven days a week.
• ISP funding is so hard to navigate and get for ASD kids. If they don’t tick the boxes you get nothing. This is particularly relevant for people with ASD with high IQ’s. They need support socially
• More funding and access to positive behaviour practitioners to support behaviours of concern
• Access to emergency respite in the Western Suburbs for people with behaviours of concern
• There are very few (possibly only one) respite service for children with disability and ASD – located in Hendry Street, Sunshine (DHHS). There needs to be more options for overnight respite for children in the Western Suburbs.
• There is a need to encourage Melbourne Eastern Suburb ASD Services to expand into the west and rural areas. The Government could offer some incentives for them to do so.
• Better access and more regional service for people with ASD
• There is an need for better easy to read information for refugees and migrants regarding services they can access with ASD
• More domestic violence services are required to be more inclusive and better equipped to understand the challenges of ASD in the Western Suburbs.

What is the quality of Autism Services in our area, the standard of advice and the reliability of information given on ASD, and the support provided?

Comments:

• There are limited services in the Western Suburbs that specialise in ASD support.
• Parents and carers often chose to travel to the Eastern Suburbs to access quality supports
• There is limited support for ASD organisations to establish in the Western Suburbs despite the ongoing needs. This relates to available office space and locations.
• It is difficult and expensive for small business to be registered as a ‘Helping Children with Autism’ (ACWC).
• Give the location (Melton), Respite, OT and ASD service sometimes factor in the location into the cost of the service, making them more expensive to use.