Submission 1710
I am in my late 50s and provide care, support and advocacy for my elderly mother living with dementia in residential care, my autistic daughter with ADHD who is establishing a small business, her husband with ADHD who works in mental health and my 5-year-old grandchild who has Autism and ADHD. My background is in teaching, administration and small businesses.
My grandchild is intelligent, has a remarkable memory, a large vocabulary and loves learning about and caring for animals. They also have hypermobility that makes them clumsy, strong sensory reception, and understands the world in atypical ways. They do not cope well with change and transitions. They find their age peers unpredictable and are frightened of loud sounds, new people and large groups. They do not understand social communication and although they can learn explicit rules to cope with social situations, when others do not follow the same rules, they become anxious and fearful. They have burned out of both day care and kindergarten. Burn out presents as a refusal to attend, refusal to leave the house for any activity including those they enjoy, a need to be in control of themselves and their surroundings, a need for choice and control over every request in their own environment, loss of ability to respond with words and growling, kicking, hitting and biting known carers. Even saying hello is perceived as a demand to respond.
It has taken months for them to recover from these burnouts. Months of low demand from safe, known carers in family environments, where they have maximum choice and control and adults negotiate most decisions with them and prepare them for upcoming changes with social stories, verbal prompts and timers. At best they will return to being able to respond verbally to perceived distressing situations or demands and not respond aggressively to their carers. This presents as storming off to their room and telling the carer to “leave me alone” in a loud and firm voice. They will return when they have calmed down. Their capacity to cope with sensory input, change and demands fluctuates. They are on medication for ADHD to help with focus and medication for anxiety.
All of this is in the context of their home environment with parents with their own diagnoses. Both parents have ADHD, but despite medication, they are inconsistent at remembering to take their own medication, get their scripts filled or remember to give their child their medication. In their own areas of interest and hyperfocus they function well, but the inattention of ADHD and poor executive functioning skills make their home environment chaotic, unpredictable and inconsistent. Late diagnosis has meant that both parents have struggled with anxiety and depression and they continue to access therapy to support good mental health. They are loving, gentle parents, with the professional knowledge to provide an emotionally supportive environment for their child but the impact of each family member’s neurodiversity creates more change, stress and inconsistency for all of them.
Autism is a permanent difference in brain development. My daughter and grandchild will be autistic for life. They can learn skills and strategies to help them to cope with many aspects of the typical world, but often they will be by masking their own needs and understandings and sacrificing their own mental health. Despite their best efforts to “fit in”, they will never be typical and will always appear different, respond in unexpected ways or suffer from the taunts of typical others who have not learned how to be kind or accommodate for those who are different. Expecting them to “fit in” is discriminatory and an additional burden on a person with a disability. The emotional cost and capacity needed to mask in a typical school classroom means that very little if any learning takes place while the autistic child focuses on managing social communication and surviving the day. It is exhausting and causes harm to their mental health.
For example. After researching the options for school, communications with the learning support staff about available, though insufficient accommodations, and a social story to prepare for a school visit, my daughter took my grandchild for a school visit. This included a visit to a prep classroom and a visit to the school chickens which was of particular interest to my grandchild. My grandchild was shy and spoke little throughout the visit but by the time they returned to their parked car, my grandchild became completely dysregulated. They stripped off their clothes, even the touch of fabric was too much, and began hitting and scratching their mother. This was a visit to introduce and familiarize. However my grandchild perceived the school environment, they were too dysregulated to attend this school without significantly more accommodations than the school could
Submission 1710
provide. Even if they had the capacity to mask, they would have no capacity left to learn anything. They are too intelligent to progress well in a Special School environment, and Thriving Kids has yet to be rolled out in schools so they do not have access to appropriate education at present. The NDIS does not fund school costs, but the changes in eligibility to the NDIS need to wait until Thriving Kids is in place and realistically able to meet the needs of children with a disability not eligible for NDS.
Both my autistic daughter and grandchild currently have NDIS plans and access both Support Coordinator and Plan Manager services. My grandchild still needs one 2 one attention much of everyday and both their parents are burnt out from juggling their work, caring roles, their own challenges related to autism and adhd, and their mental health with very little time for their own relationship. The impact of the loss of NDIS supports for either of them would be a wrecking ball through their lives because their family is so stretched and stressed trying to manage with supports and there is no adequate alternative to meet their needs available.
My grandchild has Level 3 Autism, and as such has not yet been removed from the NDIS under the government’s initial announcement of changes to the NDIS where those with mild and moderate Autism will no longer be supported by the NDIS. However, in the current changes to the NDIS Bill that is before the Senate inquiry the Government unilaterally and narrowly redefines participant eligibility and defines a long list of exclusions that will likely exclude my grandchild.
Australia is a signatory to the UN Convention on the Rights of Persons with Disabilities and while I understand that the scheme needs to be sustainable, this Bill discriminates against people with some disabilities and for those that are eligible, it limits their rights under the Convention.
disabilities do not come without the context of the whole person and their environment, and the Government has gone too far in cutting necessary supports by limiting the person’s eligibility based on only one aspect of the person and without consideration to their comorbidities or their home/living environment.
Children with significant disabilities are the responsibility of their parents, but the kind of supports a significantly disabled person needs are likely to be out the financial or personal capacity of most families. There is no consideration given to the likelihood that the family may have one or more parents with a disability or a sibling with a disability, thus vastly depleting the available resources and capacity of the family to provide support needed. Where there is a significant disability one or more parents and/or family members may need to reduce their working hours to provide care reducing the capacity of the family to earn a living. Taxpayers may need to become pensioners. Without an NDIS plan, the cost of needed therapists and treatments are out of reach. Family financial resources will not stretch even further for other family members with disabilities to be able to afford therapists/treatments.
Families with a child with a disability are already under financial strain, and this Bill states that they must now have exhausted all treatment options first, to be eligible for the NDSIS. The NDIS plan has been the way that these families have been able to access and afford individual treatment options. Will the Thriving Kids program fund or provide access to these treatment options? If not, people with disabilities with low incomes will not be able to exhaust all treatment options and thus be excluded and discriminated against via financial inequity.
Further, mandating that all treatment options that have supporting research must be exhausted to be eligible for the NDIS does not provide people with a disability the dignity of choice in their treatment. Just because a treatment supported by research exists does not mean that a person would want that treatment. Eg. If deep brain stimulation was a treatment option (like with Parkinson’s), many people would still choose not to have such an invasive treatment.
The Bill changes eligibility from diagnosis to a functional capacity assessment. Occupational Therapists study a 4-year degree to earn the credentials to do functional capacity assessments. The Government plans to use NDIS staff and/or the support of an AI tool to do these assessments in future. This is an appalling lowering of standards, and I question the validity and worth of any such unprofessional assessments. People with disabilities need assessments that reflect their actual capacity, not a poor substitute determined by a person with no qualifications and a conflict of interests. The NDS could employ in house Occupational Therapists to use valid assessment tools, if they feel that the private sector is too expensive and too wordy, however reports
Submission 1710
provided by the person’s regular therapist or an independent therapist is going to reflect the person’s capacity most accurately.
The audit reports on fraud in the NDIS do make for alarming reading and as a taxpayer I do want the scheme to be sustainable, providing services to those that need them and not funding fraudulent providers or providing services that are not essential. The scheme did not have the fraud protections and auditable assessments that were needed from the start, and the NDIA was very slow to recognize this, investigate it, report it to government and put workable processes in place to stem the flow. For the Government and the NDIA to then demonize all NDIS participants and particularly Autistic people is dishonourable and an attempt to distract from their failure to set up and manage the scheme adequately. As with any Government scheme, if there are weaknesses in the design, fraudsters will take advantage, and participants will maximize services that are available. If it is all about sustainability, fix the fraud and limit services provided by the NIDS to those supports properly assessed as “needed”. Limiting eligibility is discrimination, limiting essential services or the size of plans is budgetary restraint. Bringing Plan Management and Support Coordination in house would return more control and oversight to the NDIS and limit fraud.
After the absolute scandal of the Robodebt scheme for Centrelink services, it is alarming and scandalous that the same people were employed to develop a similar scheme to “manage” the most vulnerable people in our society. Revisiting this scheme is a dehumanising process and is creating fear and anxiety among participants trying to do the right thing.
Finally, the NDIS was “designed to: provide individual control and choice in the delivery of reasonable and necessary care and support; to improve the independence, social and economic participation of eligible people with a disability, their families and carers; and provide associated referral services and activities.” The changes in the Government’s Bill are designed for a completely different goal. They will fund very little for very few with very little choice, independence or control. There needs to be adequate alternative funded services established and available to meet the needs of those people with disabilities whose circumstances will no longer be eligible for the NDIS before they are denied access to current supports. It was because these services were no longer provided elsewhere that people with disabilities originally turned to the NDIS to provide the services they need.