Submission
No 112
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM
DISORDER
Organisation: Sunraysia Community Health Services
Date Received: 22 April 2016
Submission S112 Received 22/04/2016 Family and Community Development Committee
Submission into the Inquiry into Services for People with Autism
22nd April 2016
Sunraysia Region Overview
The Sunraysia region is situated in the north-west tip of Victoria, 540kms from Melbourne and 400kms from Adelaide, Mildura is a growing regional city that is remote from other major centres. In 2011, the estimated resident population in the Mildura Rural City Council Local Government Area (LGA) was 52,685 (ABS Census), with the population projected to increase gradually over the next 10 years to 55,385 by 2025 (Victoria in Future, 2008). Mildura’s birth rates have also shown a gradual increase over the past fifteen years, with a total of 690 births in 2013, compared to 611 in 2001.
The Mildura LGA has a high level of disadvantage, scoring 935 on the 2011 Index of Relative Socio-economic Disadvantage (ABS 2011 SEIFA). This score places Mildura as the fifth most disadvantaged LGA in the State after Greater Dandenong, Central Goldfields, Brimbank and Loddon. The latest Australian Early Development Census (AEDC) data also reinforces the level of vulnerability that exists within the Mildura Rural City, with 23.6 young people out of 1,000 found to be vulnerable in one domain, compared to the state average of 19.5, and 13.4 in two or more domains, compared to 9.5 in the state.
Sunraysia Community Health Services Overview
Sunraysia Community Health Services (SCHS) is a not-for-profit organisation, which commenced operation in 1976, currently employing approximately 150 staff. SCHS takes a holistic approach to the needs of clients and the community, providing a range of community services including allied health, community nursing, counselling, drug and alcohol, dentistry and aged care services. SCHS has an emphasis on continuous quality improvement and excellence in service delivery based on the principles of collaborative primary care. Specific services provided to people with Autism include: Child Health allied health services (Speech Pathology, Occupational Therapy, Physiotherapy) for children birth to school age, often we are the first allied health service provider working with children and we will initiate the Autism diagnosis process; Occupational Therapy, Physiotherapy and Podiatry for school aged children with Autism who have exhausted other funding streams;
Speech Pathology, Occupational Therapy, Physiotherapy, Podiatry and Counselling services
for adults with Autism; Continence services across the lifespan; and Dental services across the lifespan.
Overview of Autism Assessment, Diagnosis and Therapy Services within Northwest Victoria. Currently in Sunraysia there are two main autism assessment pathways-Northern Mallee CYMHS Autism Spectrum Support & Evaluation Team (ASSET) and private assessment.
Northern Mallee Child and Youth Mental Health Service (CYMHS) - Autism Spectrum
Support & Evaluation Team (ASSET) is based at Mildura Base Hospital (MBH) and provide Autism assessment and diagnosis for people from childhood to 25 years of age. ASSET is funded for a 0.6 EFT co-ordinator who then works with the broader CYMHS team which
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includes Psychologists, Mental health nurses and Occupational Therapists. Paediatrician is accessed through MBH. In the past parents have needed to access Speech Pathology assessments (speech and language assessment) and Occupational Therapy assessments from a range of providers in the local community including private providers, Department of
Education, Sunraysia Community Health Services (SCHS) and Mildura Early Childhood
Intervention Services (MECIS). Children already engaged with public services such as SCHS or MECIS may be able to have their speech pathology or OT assessments done through these services, but often the family needs to access private providers, at their own cost. Waiting times for such services can vary and usually complicate the assessment process, with the client having to constantly retell their story due to limited information sharing between providers.
However the Murray Primary Health Network is providing short term funding to MBH (1.7.15-30.6.16) which has allowed MBH and SCHS to work together and provide the multidisciplinary assessment in a joined up, timely and cost effective manner. This has meant there has been one pathway for publicly funded Autism assessments in the Northern Mallee over the last 12 months. The client requires a referral from a Paediatrician (or Psychiatrist) to commence the autism assessment, which would commence with an initial diagnostic interview conducted by the ASSET co-ordinator. The ASSET co-ordinator will then book the client in for a cognitive assessment, speech and language assessment, Occupational therapy sensory assessment (if required) and the Autism Diagnostic Observation Schedule (ADOS) assessment, which is conducted with 2 clinicians from the team (if required). Information from the initial diagnostic interview is shared with all the assessment providers. Individual assessments are provided to the ASSET co-ordinator along with information collected from school and educational settings which is then collated and presented at the multidisciplinary Childhood Autism Rating Scale (CARS) meeting. The ASSET co-ordinator meets with the Paediatrician immediately prior to the client’s diagnostic appointment with the Paediatrician. Following the diagnostic appointment the client then meets with the ASSET co-ordinator to plan their post diagnostic service supports which may include: Private providers (Psychologists, Speech Pathology and Occupational Therapy) who are registered with Department of Social Services to provide therapy under the Helping Children with Autism package ($12 000 in total, if diagnosed under 6 years of age, funding can be used til 7 years of age)
Private providers (Psychologists, Speech Pathology and Occupational Therapy) using the Medicare funded Helping Children with Autism rebates, generally requiring a gap payment (aged under 15 years, 20 visits in a lifetime);
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Private providers (Psychologists and Occupational Therapy) using the Medicare Better Outcomes for Mental Health rebates, generally requiring a gap payment (any age, 10 visits per year);
Private providers (Psychologists, Speech Pathology and Occupational
Therapy) using the Medicare Enhanced Primary Care Scheme, generally
requiring a gap payment;
Private providers at own cost; Mildura Early Childhood Intervention Services for children under school age (Vic);
Murray Darling Early Intervention Service for children under 6 (NSW);
Sunraysia Mallee Student Support Services, Speech Pathologists and
Psychologists who provide a consultancy services in Government primary and secondary schools (Department of Education and Training).
Private autism assessments which are co-ordinated by the parents of the child following a Paediatrician referral and rely on the use of Helping Children with Autism Diagnosis MBS item numbers. This funding support is for children aged up to 13 years of age, there is no MBS funding support for Autism diagnosis for people aged over 13 years of age. The Helping Children with Autism Diagnosis allows a total of 4 sessions with either Psychologists, Speech Pathologists, or Occupational Therapists. Within Sunraysia there are multiple Psychologists, Speech Pathologists, and Occupational Therapists who provide such assessment, but waiting times and gap payments vary between providers. Paediatrician access can also be challenging with frequent turn over of Paediatricians occurring, particularly over the last 5 years. Hence some people chose to travel to Adelaide (400km) or Melbourne (560km) to access specialist public and private Autism diagnostic services.
Murray Darling Early Intervention Service (NSW Early Intervention Service, based at
Dareton, Far West Area Health) do not provide an assessment and diagnosis services for Autism for children aged 0-6 years of age who live in NSW. However they are able to fund Speech Pathology and Occupational Therapy assessments and then refer onto a Mildura (Victoria) based Paediatrician who can refer to the Victorian Northern Mallee CYMHS ASSET service to access diagnostic services. NSW Early Intervention Service are not able to fund a Psychology assessment.
Mildura Early Childhood Intervention Services (ECIS) provide support for children with a disability or developmental delay from birth to school entry. This service is funded by Victorian Department of Education. ECIS have a team of practitioners who work in a
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transdisciplinary team model. The team include Early childhood educators, Psychologists, Speech Pathologists and Occupational Therapists. If ECIS are involved in the care of a child who requires an Autism diagnostic assessment they may provide any of the Psychology, Speech Pathology or Occupational Therapy assessments to the Northern Mallee CYMHS ASSET co-ordinator.
Sunraysia Community Health Services feedback relating primarily to assessment, diagnosis and treatment services for people with Autism Spectrum Disorder
Sunraysia Community Health Services would like to provide specific feedback on the following areas based on our experience providing community based Allied Health clinical services to the community.
Accessibility: Waiting times- the length of time for the Autism diagnostic assessment process is very variable which is a result of service providers working in different clinics, having different waiting lists for all services and having variations in the number of visits/appointments or assessment tools. This is particularly the case when assessment services are provided across multiple service providers working with different funding models or models of care. So child A may have had a Paediatrician appointment but now has to wait for 3 months to access a Speech Pathology assessment while child B may have already had a Psychology and Speech Assessment but has to wait 2 months for a Paediatrician appointment.
Availability of assessment services At times Paediatricians, Speech Pathologist, Psychologist and Occupational Therapists services can be limited in this region due to general staffing shortages. Access to locums and relief staff is extremely limited due to geographical location.
Navigation of Assessment process is challenging for many within the community particularly due to cost, literacy, transport and variations in the process. Having access to an Autism assessment and diagnosis Co-ordinator, as the ASSET team do, is very important to enable timely and appropriate access.
Organisational priorities vary between services who may be able to provide Autism diagnostic assessments for Speech Pathology, Psychology and Occupational Therapy which then can limit the availability of such services. For example a child in school setting may not be a high priority for Speech Pathology or Psychology assessment services if the child’s school behaviours are not demonstrating a need for an assessment. Referral to the school services is generated by the school not the Paediatrician or parent.
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Cost of services Funding for both diagnosis and treatment services is fragmented, complex and limited. There is one main federal funding stream for assessment (Helping Children with Autism) along with Victorian state funding to ASSET. Therapy funding is more complex with options including Federal rebates such as: Department of Social Services funded Helping Children with Autism package ($12 000 in total, if diagnosed under 6 years of age, funding can be used til 7 years of age, therapy provider must be registered;
Medicare funded Helping Children with Autism (aged under 15 years, 20 visits in a lifetime);
Medicare Better Outcomes for Mental Health (any age, 10 visits per year);
Medicare Enhanced Primary Care Scheme (any age 5 visit per year)
Medicare rebates also vary between $52.95 and $84.80 which generally means that there will be a significant gap payment required, which is not a manageable cost for a large proportion of the community. In addition the 4 sessions available for multi disciplinary assessment services under the Helping Children with Autism funding is not adequate to complete the assessment and reporting requirements under the DSM-V for Autism Spectrum Disorder.
Department of Social Services, Helping Children with Autism Funding: This is a great initiative for children prior to school, but the lack of flexibility with using the funding after the age of 7 creates significant issues for parents, service providers and education settings. We would like to see more synergy between federal health funding, State health funding and State education funding.
Quality of Services
Paediatricians have different requirements including additional appointments and information required from parents and schools.
Ongoing support is fragmented and variable depending on age of diagnosis. There is limited ongoing support, particularly for children after the age of 7. It is very difficult for children in the mainstream school system to access regular ongoing support, especially if they do not meet the stringent requirements for individual funding support through the Department of Education. For example, in Mildura there are no publically funded speech pathology services for school aged children except the Education Department. Services provided through the Education Department are limited by the relatively few staff and large number of children requiring speech pathology support. In contrast Occupational Therapy services for school
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aged children are funded through the Victorian Department of Health and Human Services and provided by Sunraysia Community Health Services, once MBS funding streams have been exhausted. Many families chose to keep some of their Helping Children with Autism 20 visits to assist with transition from primary to secondary school which may then impact on their ability to access publicly funded Occupational therapy services. This makes collaborative client centred service provision for the child and family challenging.
Consistency with model of care and assessment between regions in Victoria and then between Victoria and NSW which makes navigating the system difficult. Agencies on both sides of the border have developed a system of “work arounds” to facilitate access to diagnostic services, but these are complex, and require support to navigate. There is no option in NSW for children requiring access to a specialist education setting, so parents who choose this option for their child must arrange transport to Mildura.
Access to research and best practice models this is achieved through maintaining relationships with peak bodies such as AMAZE and ASPECT, but due to Sunraysias geographical location access to many of the services and support offered by these agencies is challenging.
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