Submission 38 — Name Withheld — Select Committee on Autism | External submission

Submission to the Senate Inquiry regarding productive and meaningful ways to improve services and support for individuals with autism

Recommendations

Recommendation in relation to Education: Extra services to support learning of everyday tasks are needed. The reduction of long waiting lists are vitally needed for the services of Occupational Therapists, Speech Pathologists, Remedial Masseurs and other therapists with experience in working with individuals with autism.
Recommendation in relation to Healthcare: More knowledge, expertise and experience of autism is needed for health professionals.
Recommendation in relation to Employment: Widely distributed and easily accessible employment options are needed for adults with autism with varying levels of ability and interest.
Recommendation in relation to Services: All individuals with autism would benefit from secure ongoing funding to access the community and continue their programs.
Recommendation in relation to Social and Economic needs: Easy access to training and mentorship in the areas of the NDIS and Centrelink would be appreciated. Not general workshops but one-to-one specific guidance.
Recommendation regarding Housing: More accommodation options and actual facilities are vital to help people with higher support needs achieve suitable levels of independence. More support is needed for carers to assist with everyday tasks and responsibilities, when needed. Help may come in the form of someone to help with specific tasks, or could be a mentor to reassure and guide in what is the most appropriate strategy to pursue, with reassurance of expectations of different options.
Recommendation regarding Justice: More training of police and security personal is needed to familiarise them with characteristics of people with disabilities in general, and people with autism specifically. Regular updates in training would also keep police informed about changes of approach as research develops new strategies and to maintain awareness of the special needs of these individuals.
Recommendation regarding Rights: There is an urgent need to raise awareness in general population about the different levels of abilities of people with autism.
Recommendation in relation to the NDIS: Review costing of services provided through NDIS and provide a guideline for charges appropriate for different services. Services must to checked to see that they are not over charging. Make NDIS funding more adaptable for changes of circumstances, without the individual needing to ask for a review and the time delays, of at least three months, that this entails.
Recommendation regarding the National Autism Strategy: More attention must be paid to the needs of lower functioning people with autism, and the people who know them best (their carers).
Recommendation regarding Funding for Research into Autism: Autism research will benefit from increased, consistent and ongoing funding,
Recommendation in relation to Social Inclusion and Participation: The capacity of each service must be assessed and brought in line with the human rights of the group and each individual.

Recommendation with regard to Advocacy, self-advocacy and self-determination: The United Nations Convention on the Rights of Persons with Disabilities should be front of mind in developing mechanisms to facilitate advocacy for individuals with autism who are not capable to self advocacy.

Discussion

Introduction

I am a parent of an adult son (aged 41) with autism and intellectual disability. Our son has many abilities, but he is strongly affected by his anxiety and his need for ritual and routine. I also share the care for my step-son (aged 42) who has Down syndrome.

Diagnosis & Prevalence

My experience in diagnosis and prevalence occurred many years ago, therefore my information is not up to date. I understand the prevalence is much greater now than in 1984, but much of this seems to be the inclusion of less severe symptoms within the DSM5.

Education

Similarly, my comments on this area are related to two decades ago therefore are not timely, however I strongly believe my son is still learning and progressing in all areas of his life. It is only in the past few months that he has had access to my DSLR camera and he has quickly learned how it works and how to get good results. He has also learned in the past few years many skills in keeping his bungalow clean and tidy, which he regularly puts into practice. These new skills have mainly been due to our efforts as his parents. Recommendation: Extra services to support learning of everyday tasks are needed. The reduction of long waiting lists are vitally needed for the services of Occupational Therapists, Speech Pathologists, Remedial Masseurs and other therapists with experience in working with individuals with autism.

Healthcare

Our son relies on Medicare to finance his medical needs, which he qualifies for through his DSP. He is reliant on his parents to organise his medical appointments and stay up to date on his health needs and commitments. He sometimes has difficulty identifying what hurts and where pain is located. He is a compliant patient if all is explained to him. Recommendation: More knowledge, expertise and experience of autism is needed for health professionals.

Employment

Our son’s paid employment ceased some years ago and there were no other suitable employment options within easy travelling distance. Extended travelling time increased his anxiety and was too strenuous for him. He now attends Arts Project Australia (Northcote) five days a week and is very happy with the service they provide. My son is not paid a wage but does enjoy payment of commissions from the sale of his artwork. During COVID-19 isolation Arts Project Australia have been providing support with Zoom meetings and deliveries of materials and pick-ups of artworks. As restrictions are gradually relaxing, my son is able to attend one day a week. Due to restrictions we must comply with various conditions - sanitation, space guidelines, etc. His access to public transport (and its perceived cleanliness or otherwise) also impact upon me as his carer, and I must facilitate his travel to fit these requirements into his schedule. Recommendation: Widely distributed and easily accessible employment options are needed for adults with autism with varying levels of ability and interest.

Services

In addition to Arts Project Australia, my son uses the services of Yooralla (up to 6 hours per week), to access the community in age appropriate areas in line with his interests. He has been able to build a very positive relationship with his support worker over nearly two decades and I wish this to continue, and adjust as his needs and interests change. Recommendation:

All individuals with autism would benefit from secure ongoing funding to access the community and continue their programs.

Social and economic As their mother, it falls to me to coordinate and manage the finances of both our sons - bank accounts, superannuation, petty cash, Centrelink payments, NDIS payments to services, accommodation/rent, payments for social and sporting activities and purchases of everyday items, food and gifts for birthdays and Christmas. My son with autism participates in this as much as possible but, in general, these decisions invariably are left to me. It is like a full-time job. Recommendation: Easy access to training and mentorship in the areas of the NDIS and Centrelink would be appreciated. Not general workshops but one-to-one specific guidance.

Housing

As a middle-aged man, my son lives in a self-contained bungalow in our backyard. Although he is independent in many ways, he is dependent on me for daily support - emotional, economic/ financial management, coordinating activities and provision of meals. When I die I expect his support to be taken over by his younger sister and I hope he will continue to be able to live in the bungalow with minimal support. His sister will also have the responsibility for our other son (with Down syndrome) and her own children. I worry for her ability to sustain this heavy burden, although she appears to accept the responsibility. Recommendation: More accommodation options and actual facilities are vital to help people with higher support needs achieve suitable levels of independence. More support is needed for carers to assist with everyday tasks and responsibilities, when needed. Help may come in the form of someone to help with specific tasks, or could be a mentor to reassure and guide in what is the most appropriate strategy to pursue, with reassurance of expectations of different options.

Justice

My son has never been in trouble with police but he has attracted their attention a couple of times, due to his unusual, but not threatening, behaviour. Fortunately he has been able to answer their questions and was able to satisfy them that he knew where he lived and what he was doing. On one occasion he gave the policeman who approached him his parent’s phone number and I was telephoned to ascertain his safety and that I knew where he was. (He likes to travel by train to visit various natural environments, e.g. the beach, the forests, rivers, reservoirs and various railways stations.) I do worry that if he comes up against someone who is unaware of his autism, he will be assumed to be mentally unstable, and cause law services to treat him inappropriately. He would not survive in a prison culture. Recommendation: More training of police and security personal is needed to familiarise them with characteristics of people with disabilities in general, and people with autism specifically. Regular updates in training would also keep police informed about changes of approach as research develops new strategies and to maintain awareness of the special needs of these individuals.

Rights

As a man who does not appear physically different to others in the community, except from his behaviour, my son is often assumed to be ‘normal’ until he is put under stress. Sometimes this affects other peoples’ expectations of him, in contrast to people with Down syndrome whose disability is more obvious to the observer. These expectations can create conditions that cannot be met. Although my son speaks fluently on topics he is obsessed with and answers questions he has had explained to him, he has a limited ability to bring words to the surface and say what he is feeling. He is not good at self-advocacy verbally, although he is quite capable of conveying his feelings through his actions, (e.g. he withdraws, he gets agitated, he yells). He also expresses his feelings and interests through his artwork and photography. My main concern in this area is the inequality between people with autism who are high functioning (with normal or above average IQ) compared to people with autism who also have an intellectual disability. Awareness of individuals with autism and concurrent intellectual disability seems to have dropped in the general public, as those with normal or high IQ are able to speak louder and more frequently in the media, creating an impression in the general public that hidden within every

person with ASD there is a genius waiting to be discovered. As with the whole population, there are all levels of IQ among people with autism and their needs are different and individual. Just because one person with autism speaks up about their particular needs and wants, it does not follow that everyone with autism has the same needs and wants. The vocal minority are dominating the agenda. Recommendation; There is an urgent need to raise awareness in general population about the different levels of abilities of people with autism.

The NDIS - adequacy and efficacy My experience of the NDIS has been mixed. Although my son gets his immediate needs met, the costs are much greater for some services funded by the NDIS compared to seeking individual service providers and negotiating your own costs. I find, with the advent of the NDIS/NDIA, much of the coordination, advocacy, administration and arrangement of services falls to me. This is an immense and ongoing strain on me. This is exhausting as I have no qualification in this area, except for a lifelong experience of my son, but as I age I am concerned how I can continue to provide this aspect of service for his personal needs. It would definitely be helpful if I was aware of a service within our area to direct us to appropriate service providers and medical professionals: not just handing out general lists, as is currently done by NDIS planners and the MyGov website, but advice with specific personal needs in focus. This would not be a constant need, but would be vital in times of transition. During the COVID-19 isolation our son has coped reasonably well with many changes to his routines and rituals, however he is constantly agitated and concerned about when he can resume his former routines. This manifests in constant queries for which I have no answers. This is quite exhausting for me and frustrating for him. I have had to adjust our demands on services through the NDIS accordingly. Recommendation: Review costing of services provided through NDIS and provide a guideline for charges appropriate for different services. Services must to checked to see that they are not over charging. Make NDIS funding more adaptable for changes of circumstances, without the individual needing to ask for a review and the time delays, of at least three months, that this entails.

The National Autism Strategy

As discussed earlier, the development of this strategy appears, from my perspective, to pay more attention to the needs to the vocal minority, i.e. the high functioning and vocal members of the autism spectrum who are able to express their individual needs, which may or may not be in line with the needs lower functioning individuals who are not able to express their needs. Recommendation: More attention must be paid to the needs of lower functioning people with autism, and the people who know them best (their carers).

Funding for research into autism Progress through results of research has been evident in the past decade. Recommendation: Autism research will benefit from increased, consistent and ongoing funding,

Social inclusion and participation of autistic people within the economy and community This will vary from individual to individual and I cannot comment on the broad spectrum. Supported employment and activity centres are vital for individuals with autism with greater needs. Recommendation: The capacity of each service must be assessed and brought in line with the human rights of the group and each individual.

Advocacy, self-advocacy and self-determination Recommendation: The United Nations Convention on the Rights of Persons with Disabilities should be front of mind in developing mechanisms to facilitate advocacy for individuals with autism who are not capable of self advocacy.