Autism Family Support Association Inc (AFSA)
Submission to
Senate Select Committee on Autism
March 2020
CONTENTS
- becececeececeececeecesueceuuccsueeeseeceueceeueecseeseeeseecesecesuecesuecseecseeeeueeeeeeesseeeseeesseeeseueees page 3 The Autism Family Support Association - Agendas of Issues page 4 The Autism Family Support Association - Submission ……………..ccceeeseeeeeees page 4
AFSA has identified six crucial systemic issues to present:
#1 Improvement in the quality and skills of all levels of support staff working with people With ASD…………….cccccccceceeseeseeeseeeecceceeeeeeeeeeeeeeeeeeeeeeeeees page 5
#2 Removal of all Restrictive Practices and replace with acceptable Behaviour
Management Strategies, Behaviour Support Plans, Functional Behaviour
Assessments and Safeguards ………….cccccceccececeeeeeseseeeeeceeceeeeaeeaeeeeeess page 5
#3 Provision of support for the use of effective Communication Strategies and Techniques including a Functional Communication Plan …………….. page 6
#4 Effective consultation and communication by government and services with parents, carers, families and people with Autism Spectrum Disorder; ie those with the lived Experience………..ccccecccceeeseseeeeeeeecceceeeeeeeeeeeeeeeeeeeeeeseees page 7
#5 Adequately resourced advocacy services to ensure they are relevant, useful ANd available to all… ee ceeccccececeeceeeeeeeeeececeeceeaeeeeeeeceeeeeeeeeeeanaes page 7
#6 Development of more responsive and accessible complaints systems at Commonwealth and State levels…………ccccccceeeeeecceeeeeeececeeeneeeeeeeeeeees page 8
ATTACHMENTS
AFSA Agenda of Issues 2019-20 > AFSA Agenda of Education Issues 2019-20 > AFSA Agenda of NDIS Issues 2019-20
AUTISM FAMILY SUPPORT ASSOCIATION INC — MARCH 2020 PAGE 2
ABOUT THE AUTISM FAMILY SUPPORT ASSOCIATION AND AUTISM
SPECTRUM DISORDER
The purpose of the Autism Family Support Association (AFSA) is to assist and support individuals with an Autism Spectrum Disorder (ASD) by providing emotional and practical support for parents, carers and families. AFSA is an incorporated, state wide voluntary parent based support group in Victoria. Through parent-to-parent support our aim is to improve the outcomes and quality of life for individuals with ASD and their families and carers. By supporting carers better, we can help those with ASD live more fulfilling lives.
nity for representatives of our ss the Select Committee in person. We include some personal testimonies and case studies of issues and concerns to support our submission.
People with ASD have the same rights to social inclusion and benefits as all other citizens, but, unfortunately, they remain some of the most vulnerable in our community. As adults, they have the right to live independent and full lives of their own choosing, with the appropriate supports.
AFSA’s submission seeks to highlight some key systemic issues and represents the voice of parents, carers and families, on behalf of and together with, their loved one with ASD.
AFSA represents the lived experience of those who love and care for those with ASD. AFSA would like to see a comprehensive, effective, appropriate and adequate system of support and services for those with ASD. Such a system would be tailored to the different needs and abilities of people within the ASD population. “To know one person with autism is to know one person” is an often used (unsourced) quote to highlight the wide diversity of autism presentations.
Many parents and carers are tired and “burnt out” and need more support. AFSA believes much more needs to be done to support those family members and other carers who look after individuals with ASD. Evidence suggests that people with ASD are over-represented within the cohort of ‘relinquished individuals’ due to a lack of available supports for families that are overwhelmed and unable to continue to cope in their caring role.
In addition, parents/carers must be appropriately supported to enable them to be consulted and allowed input into policy development and the development and implementation of support services and programs.
AUTISM FAMILY SUPPORT ASSOCIATION INC — MARCH 2020 PAGE 3
While it might seem unnecessarily emotive, it needs to be remembered that there are regular and often tragic reports of individuals with ASD being seriously injured or even dying through misadventure such as drownings or car incidents after ‘absconding’. This is often despite heroic efforts and struggles by parents/carers, support workers and emergency service workers to keep individuals with ASD, particularly those with complex needs, safe.
Long before revelations currently being made to the Royal Commission into Abuse of Individuals with a Disability there was a common awareness that individuals with ASD are regularly subjected to various forms of restraint and the victims of extensive bullying and even violence.
AFSA has been part of a number of reference and advisory groups on disability related issues over recent years. AFSA has been in existence for more than 30 years and is a registered charity. Committee members provide their time and expertise on an honorary basis.
THE AUTISM FAMILY SUPPORT ASSOCIATION - AGENDAS OF ISSUES
To enable a consistent representation of the views and experiences of our member families and their loved ones with an Autism Spectrum Disorder, AFSA has prepared three Agendas of Issues.
AFSA Agenda of Issues
> AFSA Agenda of Education Issues
> AFSA Agenda of NDIS Issues
These documents are reviewed and amended regularly and form the basis of our various submissions and responses. A current copy of each Agenda is attached to this submission.
THE AUTISM FAMILY SUPPORT ASSOCIATION - SUBMISSION
This submission from AFSA to the Select Committee on Autism focuses on the following areas identified in the Terms of Reference:
Section E - The demand for and adequacy of Government services to meet the needs of autistic people at all life stages
Section F - The interaction between services provided by the different levels of Government
Section H - The adequacy and efficacy of the NDIS for autistic people
AUTISM FAMILY SUPPORT ASSOCIATION INC — MARCH 2020 PAGE 4
AFSA has identified six systemic issues that we believe require urgent attention and should form part of the Select Committee’s investigation and recommendations.
#1 Improvement in the quality and skills of all levels of support staff working with people with ASD
Work in the disability sector needs to be valued. We need to attract and retain skilled and motivated staff who have received specialist training and ongoing support. The ASD population in particular, due to their complex needs and challenges are at a greater risk of receiving inappropriate support. This can lead to abuse and neglect. High levels of staff turnover results in inconsistent levels of care and support. Consistency is so vitally necessary for ASD people who struggle with change, anxiety and difficulties communicating or conveying their needs or frustrations. The never ending requirement to explain the particular needs of the person with ASD due to constantly changing staff creates issues for all stakeholders - remaining staff, parent/carers and the ASD person themselves. This increases the stress and workload of all concerned. We need a “production line” that educates and continues to build a workforce that can adequately support people with ASD.
For the families of those with severe and complex presentations of ASD*, finding and retaining well qualified and caring support workers remains a major worry. How can our loved ones have a good and productive life without this vital element? We have high expectations of the skills necessary, as we well should have. Most jobs and professions require appropriate skills, qualifications and training, and a level of financial remuneration commensurate with those qualifications.
- estimated by Amaze to be approximately 25% of the total ASD population cohort #2 Removal of all Restrictive Practices and replace with acceptable Behaviour
Management Strategies, Behaviour Support Plans, Functional Behaviour
Assessments and Safeguards.
Education about the rights of people with disabilities should be mandatory within all areas of the disability sector. Failure to abide by these rights by any support worker, therapist, teacher or professional should require mandatory reporting, appropriate and timely action and an independent complaint system that actually works for the person with ASD.
Restraint, seclusion, exclusion or expulsion should not be a first — or last resort to deal with the challenging behaviours of an individual with ASD. Not only are these practices a denial of a person’s human rights they can cause serious injuries or even death. Evidence shows that restraint or seclusion does not reduce or stop the incidence of the unwanted behaviour. Understanding the ‘what’ and ‘why’ of challenging behaviours of concern is a complex issue that requires appropriate, consistent and intensive therapeutic intervention. The long-term impact of the past use of restraint and seclusion on individuals with ASD must be taken into consideration. Just one frightening experience can impact negatively on an individual for many years.
AUTISM FAMILY SUPPORT ASSOCIATION INC — MARCH 2020 PAGE 5
Experts in the field of behaviour management should be consulted and provide evidence based support plans developed from a comprehensive Functional Behaviour Analysis. A plan will assist all staff to understand what might be driving certain challenging behaviours, and inform the provision of appropriate training and support. As many individuals with ASD have language and communication deficits, this process should involve a multidisciplinary team of professionals with specific ASD training and expertise, generally comprising a psychologist, an occupational therapist and a speech therapist.
#3 Provision of support for the use of effective Communication Strategies and
Techniques including a Functional Communication Plan
There is no adequate framework within education, adult and accommodation services to support language and other forms of assisted communication for individuals with ASD who have a communication deficit. As a starting point, the education system should provide the foundation communication building blocks for all children, including students with ASD. Literacy and communication is a basic human right, and is a basic requirement for everyone to function and be included in the community.
All people with expressive and/or receptive language deficits should have a communication assessment by a speech therapist with specific knowledge of ASD and the subsequent development of an individual communication plan. Typically, many schools do not provide this vital resource to support communication programs for students with ASD. Due to a lack of functional speech or assisted communication, many of these students with ASD develop inappropriate and difficult behaviours as their means of communication. These children are then “labelled” as being difficult and/or dangerous. There should be no excuses for this, and as a society, we should be ashamed.
Some State governments have legislated or have policies that teachers will be required to upskill each year to remain registered to teach and this should apply to other professionals who work with people with ASD.
Without a functional method of communication, how can children learn, be a part of the community and have a good life? This is something we all expect, so our ASD loved ones should have those same expectations. It is completely unacceptable and unlawful, given a person’s human right to communicate, in whatever form this takes, to find a person’s communication is not supported by staff. It has been reported by parents of individuals with ASD that communication aids and devices are left unused in bags and cupboards.
It is inevitable — and wrong — that these “labelled” children grow up, leave school, and become a member of the adult community, still “labelled.” The longer their communication needs are not adequately addressed, their negative behaviours will escalate. Again, ASD adults are disproportionately represented with “behaviours of concern”, requiring high levels of support and very large funding packages, and the taxpayer bears the financial brunt.
AUTISM FAMILY SUPPORT ASSOCIATION INC — MARCH 2020 PAGE 6
Evidence suggests that intensive and consistent communication resources and behaviour management strategies for each and every ASD child with language deficits must be provided in the school system. There should be greater coordination of expertise from all allied health experts in the field to provide advice, training and assistance to both families and all providers of services.
Parents and families are an integral element in the life of the ASD person, so there must be greater choice and voice given to them in the use of communication programs. This is vital given the increase in the availability of cost effective and emerging technologies to enhance the life of those with ASD. It needs to be easier for communication aids and devices to be purchased by schools and families.
Those whose life journey has already reached adulthood, and who have not had the opportunity of effective and quality services and supports during childhood should not be forgotten. It is widely recognised that the earlier interventions are implemented, the better the result for the child. However, intervention services can be implemented at any time in a person’s life, and, although it may require more intensive intervention due to age and ingrained habits, adult ASD people deserve the same consideration to provide them with the opportunities for a good life. Most ASD people will require intervention therapy at different times throughout their life, and in particular, during times of transition and periods of great change or challenge.
#4 Effective consultation and communication by government and services with parents, carers, families and people with Autism Spectrum Disorder; ie those with the lived experience.
Parents/carers must be appropriately consulted with and allowed input into policy development and the implementation of programs. All Government agencies need to do better at communicating clearly and collaboratively with parents, carers and families of those with ASD. One critical time when this needs to occur is during transition from one setting to another. If agencies were to listen more attentively to those that know a person with ASD the best — their families — better outcomes will be achieved in day to day care and longer term support for those with ASD.
#5 Adequately resourced advocacy services to ensure they are relevant, useful and available to all
As we move into the full operation of the NDIS it is even more critical that the right advocacy services are there to support individuals with ASD when negotiating their care and support plans. The advocacy industry remains unregulated and it appears anyone can call themselves an advocate. This preys on the vulnerability of families, who at times are overwhelmed and desperate, due to the stresses of their caring roles.
There needs to be adequately funded advocacy services that are readily accessible with clear guidelines and adherence to a mandatory code of conduct for provision of advocacy services.
AUTISM FAMILY SUPPORT ASSOCIATION INC — MARCH 2020 PAGE 7
Government funding rests with a limited number of recognised advocacy services. Most of these are mandated to be involved with systemic advocacy, which is a vitally important element for systemic changes to occur. However, many families at some point will require the services of an independent advocate to support them through their individual negotiations. There remain many obstacles within the disability service sector, including education, that seems insurmountable to many families with an ASD loved one. AFSA believes that government funded advocacy services are limited in the advocacy services they can provide. For example, the peak ASD body in Victoria is not funded to provide individual advocacy. In the absence of individualised support, many families feel abandoned and alone, leading to carer stress, depression and PTSD. A list of service options or a brochure with website links is not an adequate advocacy support service.
Regulated advocacy and support services need to be available for parents/families from diverse backgrounds across Australia.
Many residents with ASD in supported accommodation facilities no longer have active family involvement to ensure the continued quality of their care, support and wellbeing. Unfortunately, not all support staff working in these facilities have the desire, or at times, the correct expertise to ensure their client’s complete care. These residents with ASD are extremely vulnerable to abuse and neglect, and it is imperative that well-resourced advocacy services are provided as an independent safeguard for this group of individuals to ensure their wellbeing and proper care.
As the population of those with ASD and their families gets older, individual advocacy and related support services will be critical to the system.
#6 Development of more responsive and accessible complaints systems at Commonwealth and State levels
There needs to be a robust complaints system that allows for timely and thorough investigations concerning the wellbeing of people with ASD. The system needs to be a comprehensive one with the right powers and resources and the ability to investigate in both public and privately controlled services. Any recommended outcomes from such processes must be able to be implemented quickly. There is anecdotal evidence that families are unwilling to complain about problems with services for fear of their family member with ASD being disadvantaged. It takes a strong, well supported family to pursue avenues of complaint, including the legal system, in the face of crowds of bureaucrats, interminable meetings and hearings and pages of regulation, policy and procedures.