1a. INTRODUCTION

I am the primary carer of my 16 year old autistic boy who also has ADHD and dyslexia.

The impact of his autism on our family has been severely traumatising for all of us. He suffered an intense 6 month autism burnout crisis. One of the main reasons that he reached burnout was due to lack of supports and therapies whilst we were waiting for NDIS funding to be approved.

1.b CONCERNS

• The NDIS bill is happening without consultation or inclusion of disability groups, proving that they are not respected, considered as valuable or heard. This results in a direct attack on disabled Australians.

• It’s being rushed through without having put the appropriate supports, services, groups, committees, information services or facilities in place. Meaning that once services and funding are withdrawn, there is nowhere for disabled people to fall onto.

This is ignorance as the services do not currently exist for disabled people to ‘go elsewhere’ to survive or gain supports.

Therefore it is a discriminatory practice to remove NDIS services and funding until the new services are up and running and have proven capacity for the large percentage of disabled people in Australia.

• service providers could start closing their businesses or removing their services since limited people have the finances to pay privately amidst the confusion and changes.

This would result in less professionals available , which will lengthen waitlists and hike up costs for services. Meaning that disabled people would be left in struggle, pain, isolation, with limited support or resources.

Australians should not have to wait years or pay thousands out of pocket to live a daily life of dignity and participation in community.

2. RECOMMENDATIONS

Consult disability and autism bodies before making changes. Do not rush it through when the supports/facilities do not exist elsewhere.

Due to the requirement of finding and paying privately for an OT to write an FCA, even though he has a permanent autism diagnosis, there was a delay of several months, in which he was rapidly deteriorating.

If this process was simplified, supported and processed more quickly then we would not have required the amount of therapy and funding that we eventually did.

I advise that emergencies are dealt with quickly and families are supported to access services much quicker. Reducing the overall cost of required funding.

Support families from the beginning. The process is too long, stressful and complicated. Why wait for a child to deteriorated , when this will eventually create higher needs.

Our son used to be a Level 2 autistic child. By the end of the crisis, he appeared as a Level 3 autistic child, proving that delays end up in more supports needed long term, and a bigger waste of money to the NDIS.

A good place to fund: There needs to be more public educational / therapeutic facility options that cater to autistic kids , that have reduced timetables, and more support, play, connection, to help rebuild capacity and reintegrate into safe settings, routines and engagement. Since school is often a trigger for burnout. A large part of our funding went towards a therapeutic space where he could hang out and develop at his pace, to assist recovery from burnout. Now he is nearly school ready again. If the government provided government funded therapeutic facilities/ spaces like this, then there would be less need for people’s NDIS funding to be used up so quickly on these necessary places that help to increase capacity and recover.

The Educational Support Centre that he now attends is far away because all the local education support centres are full.

NDIS supports have been and are essential for safety, development, and stability for my son, and for all members of our family.

Needing an FCA every 6 months due to the deterioration of a child is stressful and parents in crisis cannot cope on their own.

Instead of FCA’s, a person who can come in to meet the family and see/understand the situation and help them apply for funding and complete paperwork and send it off would benefit all parties.

• There are not enough public emergency services available for autistic kids. CAMHS was already overwhelmed with a long waitlist, and when they eventually saw us, they refused our son and told us to go to NDIS for supports.

They also advised medication but the Paediatrician waitlist was so long that we had to go private. Psychiatry appointment was also so long that we had to go private. Other families are not so lucky to be able to afford a private psych/paed in an emergency crisis. Employ paediatricians and psychiatrists.

• Families are living in hell and they have nowhere to go. Our son was becoming increasingly physically aggressive and we tried to protect our 11 year old daughter.

Sometimes Crisis Connect helpline cannot help. Create a place that families can physically go to in a crisis/emergencies. Whether that be a centre with supports, or at least rushed through appointments available on the public system.

• A&E tried to send us home with no help and when we said that we couldn’t bring him home in that distressed aggressive state, then they eventually offered some ‘take as required medication ’.

’Take as required medication’ should be offered more readily at A&E when parents are lost and a family is in danger of physical harm. The only other solution is to hospitalise the child which often creates longer term damage and trauma, resulting in more funding required down the line and for longer.

• Often providers have reduced fees if paying privately. Allow providers to charge less than the general NDIS rates.

• Provide a respite space with counsellors and supports, babysitter, where families can come to recover for a day and night, to escape the aggression at home , especially women and children.

Mother and daughter found that there was nowhere safe to go to escape the aggression at home and get support, a cup of tea, a shoulder to cry on, whatever they needed to help in the moment of physical danger.

3. SUMMARY of Recommendations

• Consult disability and autism bodies before making changes.

• put the new routes and plans for autistic and disabled people into practice before making changes to the NDIS

• simplify and support the process of applying for funding to make process quicker, preventing deterioration, resulting in lower long term costs.

• Address emergencies quickly to prevent more funding being required for longer.

• more public educational / therapeutic facility options required for autistic children. Resulting in less autism burnout, meaning less NDIS funding required long term.

• come in to meet the family and see/understand the situation and help them apply for funding, complete paperwork and send it off. Resulting in less family distress, quicker addressing situation, less funding required long term.

-There are not enough public emergency services available for autistic kids.

-Employ paediatricians and psychiatrists. Rush through appointments on the public system.

• ‘Take as required medication’ should be offered more readily

-Creat e a supported place that families of autistic aggressive people can physically go to in a crisis/emergencies.

-Allow providers to charge less than the general NDIS rates.

4. HOW NDIS AFFECTS US

As a family, we can see the full benefits of how the NDIS has saved our family from a living hell. Even though there was a wait to get the therapies and supports, we would not have survived without them.

Due to the funding, our son is now re-entering the public school system, is able to leave the house, pay for something independently at the supermarket, he is medicated and growing his capacity to be around people. He has joined soccer teams, (soccer regulates him), and he is repairing his relationships with his family. We have no family here in Perth, so there really is nobody else that we can turn to other than the NDIS.

Our funding is running out and we are applying for a COC. We have evidence that these intensive therapies and supports are working, so I envisage a bright future for our autistic son, and I see that if the extra funding is received, then he will not need as many of these supports in the future.

If the extra funding is not received, then he would need to stop going to a games group where he learns to be around people, soccer where he regulates, therapeutic facility where he grows capacity to be around people and learns how to engage in life & develop. He would have no social worker, who guides him in moving forward in life, exploring job applications, assisting in increasing school attendance etc. he’d have no OT to help him work around his physical limitations, and he’d have no speech therapy to help him became more audible, clearer in speech, to interact with people.

This would all result in a major risk of regression into burnout, isolation, aggression, dysregulation, less community engagement and a strong possibility of ending up in a mental health ward, deteriorating and becoming a long -term financial drain on the system.

Evidence that the government saves money by allowing the NDIS to address autism burnout quickly.

Kind Regards,

Mother of autistic son.