Autism Advisory and Support Service (AASS) are a grass roots not for profit community organization who support families on a daily basis through the journey of having a child with disabilities, especially an Autism Spectrum Disorder. We also offer a multi disciplinary approach to therapies and supports for each individual, depending on their needs and those of the family.
We work at the coal face of the sector, across multiple settings with some of our communities most at risk families. These vulnerable families include:
- Participants with complex and severe disabilities
- Families from culturally and linguistically diverse backgrounds
- Children in out of home care
- Aboriginal children, especially those in out of home care
- Families from low socio economic backgrounds
- Parents who themselves have mental health issues or other disabilities
As providers since 2007, AASS have served our community under recurrent Government funding model (Department of Aging, Disability and Home Care – ADHC), through the Helping Children with Autism (HCWA) funding and now under the National Disability Insurance Scheme (NDIS). We also have experience as parents of children trying to navigate these schemes. From these two perspectives we have identified multiple issues and are offering what we consider to be basic recommendations for overcoming these issues to support the Thriving Kids initiative. Many of the issues below are from a previous discussion paper written with my colleague Myrna Dominguez, however I have included them for your perusal as most are relevant for the purpose of this inquiry.
We support a safety net for those who may have a diagnosis consistent with the Thriving Kids parameters, however a system is needed to ensure a holistic, wrap around approach is embraced without the issue of siloed funding. We believe our recommendations are simple, cost effective solutions that will see the sector remain viable and sustainable while offering evidence based intervention, supports and services to those in need.
Grace Fava OAM
Founder/CEO
Suggestions at a Glance.
- We need more affordable access to assessments. Current wait times in south west Sydney is 18 to 24 months through the community pathways. Most families cannot afford the thousands of dollars for an Autism Assessment (over $3500 from the peak Autism body). AASS charge $1400 for the assessment and a further $600 if a report is required (if there is a diagnosis).
- Better Medicare rebates for assessments. Current Medicare rebate equates to approximately $300 towards the final cost leaving a gap for families.
- Fund reputable and experienced providers to offer subsidized/bulk billed assessments.
- There is a lack of clinical psychologists and developmental Paediatricians to perform Autism assessments in line with the DSMV. This leads to more money to be spent by families and the loss of vital early intervention time on wait lists. We recommend that Psychologists with a minimum five years experience can be relied on to have their assessments accepted without the need to be signed off by a clinical psychologist, psychiatrist or paediatrician.
- There is a lack of preschool spaces for children with additional needs. Most preschools have a wait list and then they lack the staff to support the amount of children with additional needs in their centres.
- While playgroups are a beneficial way to slowly engage children into play based socialization, Preschool is the best way to ensure children can play alongside their mainstream peers and learn social skills and other important early development skills.
- Our Universities do not teach disability in any meaningful way for teachers or early childhood staff. They also do not teach sensory processing disorder to Occupational Therapists or Alternative Communication devices to Speech Pathologists. The curriculum needs to change to meet the needs of the current influx of childrens, especially those with Autism and other invisible diagnoses.
- There are insufficient support classes to maintain the level of assistance children with levels 1 and 2 Autism require. This is leading to partial enrolments, “reset” days (this is a way to suspend a child without the need for documentation and supervision from the Education regional office.) School suspensions are the only way to offer the Department of Education robust evidence for the need to prioritize a child for a rare place in a support unit or Special School. It is leading to more children being kept home with no educational supports and is in turn impacting on the stress levels of parents, especially mothers and our most vulnerable community members, who either have to advocate for assistance or are unaware of how to advocate so their child misses out of valuable early intervention and assistance.
- In our experience and as part of some University led research that we have contributed to, it is important, especially post diagnosis to support parents before assisting the child. All parents experience a rollercoaster of emotions and perpetual or prolonged grief. They grieve the child they dreamed of and have to now understand how their amazing child have a different way of learning and they have to embrace a new way to parent. Without this step, most parents are so consumed by emotions that they can not understand their childs needs and then they expect others to “fix” their child. AASS have been supporting families in this way for the past 19 years with positive outcomes, despite not being funded. This is not sustainable and we have been pushing back to the NDIS funded supports to try and fill this gap however there are no NDIS nor mainstream providers funded to fill this void.
- Pre NDIS, the Helping Children With Autism Program (HCWA) was rolled out federally where each child was allocated $9,000 per year for services. This was successful for most families and allowed children to receive early intervention supports while setting parents expectations to a realistic level and encouraged them to be proactive in their childs care. This pathway would be preferable so families and providers can organize consistent and meaningful therapies and supports.
- Prior to HCWA, many service providers, including AASS were block funded with KPI’s attached to their funding to support children with disability in the community. AASS received $550,000 per annum with KPI’s of 40 children to be supported in a year. We surpassed our KIP’s and served almost 400 children by creatively filling the void in schools. We offered 1 to 1 supports to some children and small groups for others. The outcomes were successful and offered value for money, evidence based support by combining social skills with therapy and a pathway that supported both the children and the schools. This method would be preferable to ensure consistency, value for money and a collaborative approach with schools.
- Carer Gateway is funded to support families in need with respite and other needs for each carer. When this program was working, it was able to support families in crisis. It is now a three month program and does not meet the needs of vulnerable families crying out for help. Offer small blocks of funding for respite/carer support for vulnerable families so they do not have to go down a frustrating DCJ pathway. Single parents who require surgery, parents who have to care for their own parents and do not have aged care funding for this, parents with multiple children with additional needs to prevent carer burnout all should have access to a minimum of 28 days of respite per year if required.
| Sector | Issue | Recommendations |
|---|---|---|
| Assessments | Many parents cannot afford a Paediatrician for an assessment for their child. Community Health in South West Sydney have waiting lists of 18-24 months. For those with significant and complex needs that are apparent early, these wait times put their development at risk of further regression instead of improvement through early intervention. | ✓ Better Medicare subsidies for assessments. ✓ Increase funding for Developmental Pediatricians in Community Pediatrics. |
| Assessments | Assessments performed by Psychologists (must be completed by a Clinical Psychologist) will not be accepted by the NDIA unless co signed by an Occupational Therapist or a Pediatrician. This puts a financial and time burden of the family and the child. | ✓ Change the criteria from Clinical Psychologist to Psychologist with 5 years experience for accepted diagnoses when an accredited diagnostic assessment tool is used. |
| Workforce | There is a great shortage across most areas of the disability sector for staff including Doctors, developmental pediatricians, allied health staff, nurses, teachers and early years educators especially any with special needs training and education. The allied health shortage is attributed to the lack of paid supervision for students in their final year of study. | ✓ Government to organize a major recruitment drive for high school students over a number of years to highlight the benefits of working within this sector. ✓ Government to work with TAFE / Universities around workforce planning and training. ✓ Government/Universities to pay external supervisor roles. ✓ Government to invest in incentives to address skills shortages in the disability sector. |
| Workforce | There is no easy way to provide an NDIS type of scheme for early intervention. No organization can manage to provide intervention to the amount of children in need. This amount increases exponentially each year, not due to better understanding and diagnostics, but due to the | ✓ Change the NDlS for early intervention back to a similar system as HCWA. ✓ Each child receives an amount of funding under a Medicare type arrangement that they can use with registered providers. |
| Sector | Issue | Recommendations |
|---|---|---|
| Workforce | increase in children with a diagnosis. | ✓ These providers are listed on a website that parents can easily access. ✓ I recommend 60 hours of therapy per year per child. ✓ Provider travel can take up a large portion of this funding, there should be a guide of what they can claim to maximise therapy supports. ✓ If a child requires any more than this due to their complex needs, then they can apply to the NDIS for a fuller plan. |
| NDIS | The NDIS is pushing back on Psychology to have it funded under the public system or as an out of pocket fee. Public Psychology services in South West Sydney state they are not an ongoing concern. The staff are not experienced in specific disabilities and there are not enough staff to take on the people requiring services. | ✓ Fund psychology under NDIS where it is disability related. ✓ Recruit more workers in the workforce ✓ Increase the amount of public mental health clinics that bulk bill in line with population growth and need. |
| NDIS | Psychologists charge at the NDIS rate of $232.14 per hour. This is out of reach of most families. | ✓ Increase the amount of public mental health clinics that bulk bill in line with population growth and need. ✓ Offer incentives for bulk billing patients with no gap fee. |
| NDIS | Families who have no capacity to manage their childs support needs due to a lack of education, mental health issues or English not being a first language should be offered support coordination to ensure timely and meaningful supports are put in place and effective use of the NDIS plan. Most families are NOT offered this support, instead being told by LAC’s that they will support them. LAC’s have such high KPI’s and are not easily reached so are unable to support families in this way. | ✓ Support coordination funding or similar to be a priority for families who need support to build capacity. |
| NDIS | A high number of service providers who offer face to face services | ✓ These providers should all be registered with the NDIS either under their own name or as part of a consortium to ensure accountability and consistency with quality of services and supports provided. |
| ✓ Registration will also ensure they are accountable to the NDIS workers check and NDIS Quality Safeguard Commission (QSC) requirements, especially with regards to restrictive practices. ✓ Therapists to work a minimum of 5 years for a large organization or sole practitioner before being allowed to work for themselves to ensure that participants are getting quality and best practice supports. |
| Sector | Issue | Recommendations |
|---|---|---|
| NDIS | A lack of experienced Allied Health Professionals A lack of student placements to offer experience in a variety of settings |
✓ Collaboration with the Universities and High schools to have a recruitment drive. ✓ Paying providers a small supervision fee to host student placements within their service such as with nursing and physiotherapy. ✓ Mandatory 1 year practical placement in a variety of settings for students in their final year to offer them diverse experience in service provision. |
| NDIS DCJ Health |
NDIA say it is not reasonable and necessary for children with limited informal supports to have core support funding for parents who require hospitalization and time to recover. Planners and LAC’s say it is parental responsibility to care for children. This is not possible when you have a single parent family or parents are at breaking point. | ✓ Have NDIS planners and ART solicitors become familiar with the changes in the ACT where a holistic approach is taken. ✓ Value for money is supporting families today and not allowing them to face crisis point or relinquish care. This will cost many times more in funding. |
| DCJ | When a family moves regions, there is no follow up between the regions to ensure continuity of care. It is rare to see DJC workers commit to supporting families in crisis. |
✓ Ongoing communication and collaboration between regional staff. ✓ Clear direction from DCJ on where families can go for support when they say they cannot assist. ✓ Families with complex needs to go in front of a multidisciplinary panel that includes NDIS, education, police, health and mental health so cases are not prematurely closed. |
| Sector | Issue | Recommendations |
|---|---|---|
| Health Mental Health |
Many parents rely on community-based Doctors as they cannot afford a private Doctor. Most Doctors have a fee for service model that is out of reach for many. Once a child has a formal diagnosis, they are often not able to readily access pediatric supports from community health. Once they turn 18, they are sent to a Psychiatrist as there is no other appropriate specialist to take on their case if they are on medication. |
✓ NDIS to fund Psychiatrists when the issue is related to a participants disability. ✓ More developmental Pediatricians and Psychiatrists who understand complex disorders to be offered incentives to bulk bill both in private practice and in the health system. |
| Health Mental Health |
Families are not able to change local area health services if they are unhappy with their treatment and/or the clinicians involved with their care. | ✓ The ability for families to choose their community health practice by crossing LGA boundaries. |
| Health Mental Health Education |
Long wait lists for assessments in community health. Most families cannot afford an assessment from a private practitioner. |
✓ More Psychiatrists/Clinical Psychologists/Pediatricians recruited from Universities with training in this area. ✓ A well trained mental health team who have appropriate resources to provide timely assessments. ✓ The capacity for school counsellors to offer more assessments than just IQ and functional capacity. Eg Autism, ADHD etc. |
| Health Mental Health Police Disability Education |
There is a lack of understanding of what is mental health and what is a person in distress who happens to have additional needs. Many times people with additional needs | ✓ Training for all staff on mental health/intellectual disability and Autism across all sectors ✓ Better staffing in hospitals to avoid “tick and flick” attitude. |
with health issues are placed in Mental Health Emergency as there is a preconception that the needs are not health related. The families are not listened to. If a person arrives at hospital after being sedated, they are deemed safe to have the mental health section removed and discharged home without proper consent or consultation with the family, taking into account risks and the amount of times they have presented with the same issue.
- Independent Liaison person to meet the patient on arrival at the hospital.
- Patient to be offered an advocate to help them speak up for their needs.
- A holistic approach to look at the needs of the family as well as the patient. This is especially important when considering discharge.
- If a person presents more than twice for the same issue they MUST be admitted and offered medical investigations.
- Transparency for all families so they are not ignored, and their needs are taken into account.
- The formation of safety net organizations who are available 24/7 to assist and support when families are in crisis.
- Discharge papers to be handed to families on discharge.
- The capacity to question actions and information noted on the discharge papers, and for these to be edited accordingly.
- For a hospital Liaison Officer to check in with the family post discharge.
Mental Health | A shortage of Psychiatrists who can work with individuals with Complex Needs. | - A recruitment drive attracting Psychiatrists from overseas.
- Compulsory student placements in a variety of mental health settings including where disability and mental health are comorbid conditions.
- Appropriate and compulsory training for all levels of mental health workers.
Mental Health | A lack of inpatient facilities that are not locked and take a holistic, trauma based approach to supporting the whole family. | - The OASIS centre which is part of the Murdoch Childrens Hospital in Victoria is an example of what should be the foundation of support in NSW.
I know we can expand on their
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model to make it an appropriate, holistic setting.
- I have brought this to the attention of the previous NSW Minister for Health and Mental Health in the past. Nothing has resulted from this.
Education | A lack of appropriate settings for the number of students coming through the system. Many are placed in mainstream where the environment is not conducive to their learning needs. Sadly students require evidence on their need for a special placement which means they are suspended and placed on partial enrolments. Presently the Principal has the final say on placement of units in their school. In many cases, a lack of reasonable adjustments are not made within the classroom in cases leading to students not being able to fulfil their academic potentials. | - Every school MUST host a variety of support units in their school.
- Principals to be reminded that they are there to serve the community needs and ensure appropriate placements are made for all students, not just those who are academically minded.
- Suspension and partial enrolment is not the answer. If there were more early intervention classes, schools can be prewarned to the needs of the student, leading to a more successful outcome.
- Support from the Department once units are developed to furnish appropriate spaces such as sensory rooms.
- Abolish Local Schools, local decisions where it comes to supporting students with additional needs.
- More power to regional staff to step into a school to offer supports and training.
- Yearly education to all staff on the disability standards, professional development in areas of need within the school, consistency across the board for all teachers to understand and follow through with reasonable adjustments and individual learning plans.
- Principals to reapply for their position every three years. The panel they apply to should include a representative from
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an NGO who has no affiliation to the school, a member of the Department and a parent from a different school.
Education | There have been no new Early Intervention classes formed in NSW in the past 20 years, despite the increase in need. Research shows that early intervention is the key to success. Many children miss out on this early intervention pathway prior to school as a result. There are many cases of child care centres expelling children from their centre/preschool without requesting support or making accommodations. | - Each school to have an early intervention classroom.
- Stricter laws and processes for centres who do not make adjustments and accommodations for children with additional needs.
Education | For many families school is the only setting where interventions can take place. Some schools are now charging therapists to enter the school. This is draining an already underfunded NDIS plan especially when travel is charged, leading to less therapy time for the participant. | - Each school is to choose registered service providers to service the students in the school.
Education NDIS | Principals not allowing therapists into schools leading to poor outcomes. Therapists can better support students in an environment that is not always conducive to their needs and offer positive strategies to teachers. | - Principals to make accommodations for therapy to occur at school at least twice a month.
DCJ | Lack of experienced staff
Poor communication with stakeholders
High number of cases per person
Poor decisions made, putting vulnerable children at risk
Lack of accountability . | - The need for more proactive involvement as opposed to reactive and punitive involvement by introducing more supports to families in the early stages of engagement.
- DCJ to draw immediately on resources to support the family as opposed to reacting to crises.
- DCJ should be a safety net for families so their issues do not become crises.
- Organizations who are contracting services for DCJ
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must have yearly training in their roles and responsibilities, transparency in the supports offered, consistency in their supports and stop duplicating services based on what their service network offers.
- Employment of only qualified and experienced (or well trained) officers.
- Case workers and contractors MUST have knowledge and understanding of a range of disabilities per the cohort of families in their areas.
- Discharge of families from the service must be looked at by a panel, not just a worker who has KPI’s to meet.
NDIS | Providers billing maximum rate for provider travel.
Some providers charging for 60 mins therapy, 30 min travel to client, 30 min return to office. This causes funds to deplete at double the funded rate.
NDIS state they do not fund for provider travel, but, they allow it in their pricing guide.
Providers can charge 60 mins travel per client, plus kms. | - NDIS to enforce rules around provider travel. Perhaps incorporating a flat fee for travel.
- If NDIS do not fund provider travel, then it shouldn’t be stated in the price guide. Reconsider wording in guide.
- Maybe change pricing for clinic based vs mobile. Different rates for the different service which would eliminate the travel fees.
DCJ | Families in crisis can only access support by contacting DCJ. This presents them with a conundrum as the thought of reaching out to this government department conjures thoughts of having their children taken away and being judged as bad parents.
There are programs that DCJ refer to however these are generalized support services and you can only access them through DCJ. | - Fund a direct line of “safety net” providers outside of DCJ that families can reach out to directly for support where there is no direct risk to the child.
- This will be a range of providers to ensure families can be supported in a way that meets their families needs and not one provider who uses a “one size fits all” approach. EG Autism, Cerebral Palsy, physical disabilities, invisible disabilities, CALD and indigenous.
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