Submission 352
to whom it concerns,
I am the mother of a 13 year old who is currently receiving NDIS supports.
We live in a rural town in south eastern NSW. I would like to share with you some of our personal experiences and insights into the proposed changes to the NDIS, with the introduction of Independent Assessments.
I initially felt reluctant to share our story but feel that through lack of transparent consultation and provision of information relating to the introduction of IAs we have essentially been backed into a corner. The NDIS consultation process was little advertised and inaccessible for most (unless you have a qualification in finding hidden documents and translating government jargon).
As a 13 year old I feel that my daughter has the right to choose what information she shares and with who, to stand up for her rights and to be heard. This is where the proposed changes are failing people with disability yet again. We as Australia have a dismal history when it comes to the rights of people with disability. Historically people with disability have not been heard; instead, decisions have been made ‘in their best interest’ by people with other agendas. How does it feel to be told in everyway that the way you want to live your life, your dreams and rights don’t matter because even though we have come so far (through the introduction of the NDis), decisions are still made for people with disability?
I have raised my daughter as we all strive to raise our children to know that she matters, she has a voice and should be proud of her individuality. The introduction of IAs sets the system so far back, taking away the voice that people had.
in particular i would like to address the following terms of reference:
- a. the development, modelling, reasons and justifications for the introduction of independent assessments into the NDIS; b. the impact of similar policies in other jurisdictions and in the provision of other government services; c. the human and financial resources needed to effectively implement independent assessments; d. the independence, qualifications, training, expertise and quality assurance of assessors; e. the appropriateness of the assessment tools selected for use in independent assessments to determine plan funding; f. the implications of independent assessments for access to and eligibility for the Ndis;
Independent Assessments
Submission 352
g. the implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports; h. the circumstances in which a person may not be required to complete an independent assessment; i. opportunities to review or challenge the outcomes of independent assessments;
I initially felt reluctant to share our story but feel that through lack of transparent consultation and provision of information relating to the introduction of IAs we have essentially been backed into a corner. The NDIS consultation process was little advertised and inaccessible for most (unless you have a qualification in finding hidden documents and translating government jargon).
As a 13 year old I feel that my daughter has the right to choose what information she shares and with who, to stand up for her rights and to be heard. This is where the proposed changes are failing people with disability yet again. We as Australia have a dismal history when it comes to the rights of people with disability. Historically people with disability have not been heard, instead, decisions have been made ‘in their best interest’ by people with other agendas. How does it feel to be told in everyway that the way you want to live your life, your dreams and rights don’t matter, because even though we have come so far (through the introduction of the NDIS), decisions are still for people with disability.
I have raised my daughter as we all strive to raise our children to know that she matters, she has a voice and should be proud of her individuality. The introduction of IAs sets the system so far back, taking away the voice that people had. A:
Part of the justification of these introductions is that it will make the NDIS more equitable, I don’t see how. It removes a key principle that the NDIS was designed for, recognising that people with disabilities are individual, with individual lives, goals and supports. My daughter although diagnosed with a disability that many others live with, has very different needs, her own needs and her own life. By taking away this individuality and ensuring that people with the same boxes in an assessment ticked receive the same funding clearly says to them that their individuality doesn’t matter, they don’t matter. B:
I am telling this part of our story to share how in the past , assessments and eligibility tools have failed our family as our daughter did not neatly fit into a check box until she got older and even when she did the system failed.
When my daughter was born, in our local hospital. We noticed that she wasn’t feeding well and suspected seizures. The health system failed to listen in this instance until she became life threateningly ill.
We questioned about development but it wasn’t until a doctor witnessed her have a seizure that people began to listen. The next few years were a whirlwind of appointments and hospitals, we learnt that our daughter probably had a neurological syndrome and we were sent home. At 22 I had no idea what supports were available or needed and no one gave us the information. Im telling this part of our story to reference how difficult it is to be heard as a parent of a child with a disability. I was scared so many times that my daughter would die and we felt alone.
Independent Assessments
Submission 352
My daughter was tube fed, unable to walk and required support for everything yet according to ADHC, her assessed disability did not meet criteria for any support.
Through determination and contacting everyone I could, we were able to access some Occupational Therapy and Speech therapy through Community Health; this wasn’t regular, and the therapists weren’t experienced working with people with disabilities.
When my daughter was 7, she finally met the diagnostic criteria for Autism (Level 2) and profound intellectual disability—we were told ‘oh sorry, she is too old to receive early intervention supports.’
We applied for support with ADHC again and were told there were no “packages” available. We had to fight; finally, our case was taken to the board, and it was decided that we met enough of the criteria to receive $2500 per year. This was to cover everything: therapy and any support needed. Our family was at breaking point. Then we were told that because we now had access to ADHC funding, that we were no longer eligible to access Community Health; therapy all but stopped as we had to find new therapists and only had limited funding.
The impact of the ‘box ticking’ type assessments used by departments such as ADHC (in the past), and the health system took away the opportunity for my daughter to receive supports while she was at the early and crucial stages of learning and child development – how many will be disadvantaged by similar tick box assessments when they are introduced?
c:
the human and financial resources required to effectively implement independent assessments will greatly disadvantage people like my daughter and our family.
We have struggled always to find therapists as there’s little incentive to move to a rural area and no courses available locally for people to become qualified. My daughter is not able to verbally communicate—she signs but requires significant support to communicate. We haven’t had access to speech therapy in years as it is. If independent assessments take therapists away from rural areas and providing therapy, how will people receive the supports needed to ensure they are able to participate in community, access safe and appropriate equipment, and go about day-to-day life?
one of the main things we work with therapist(s) for is increasing my daughters independence so that she may not require the same level of support in the future because of the investment now; how do we tell people that they aren’t worth this investment? d i would like to address that it has taken me as a mum 13 years to build strategies to best support my daughter: Therapists who we’ve known for almost 7 years are still getting to know her capacity – they are still learning about her and her capacity for day-to-day activities. These are therapists who have known her a long time, specializing in working with children with disabilities. An example of this is due to my daughters level of anxiety (Autism related), difficulty processing information ( also related to Autism); when overwhelmed, she can’t walk or judge danger. how would an allied health professional—with potentially no experience with autism or children—know this?
E & G:
Regarding the appropriateness of the assessment tools that are to be used and the impact that they will have on determining plan funding. Each of the assessment tools are designed to be stand alone assessments, i am struggling to see the relevance, appropriateness and benefit of the proposal to use a ‘hodge podge’ mixture of various assessment tools, some not even vaguely appropriate for individual disabilities. how would it feel for someone with a physical disability to have their family or partner questioned about their cognitive ability? This brings me to another point, for our daughter who lives with a profound intellectual disability, how is she supposed to answer questions, reliance on family support to do this is increased. What happens for people who don’t have trusted supports? e: For example people living in group homes, with no family and only a service provider to answer these assessments, whos agenda is heard then? the NDIS was built with recognition that some people with disability are extremely vulnerable and service providers had been “cashing in” on this. Receiving block funding and not giving people with disability autonomy over their own lives and supports. If theirs is the voice that is heard the power to abuse is increased.
i also question the appropriateness of a few assessments to decipher how complex individuals are, as above, it has taken years of qualified specialist support to begin to understand my daughters needs, the fact that this will all be determined and funding allocated based on the interpretation of one individual who may be skilled for example on physical disability but have no understanding of my daughters disability is just incomprehensible. Yet another way to tell people that their individuality doesn’t matter.
F:
in relation to access, i cannot see the benefit of IAs as the individuals seeking access will still have to meet access to the ndis prior to having an IA. it know in our area that people are waiting years to see a paediatrician or receive diagnosis. People will continue to not meet scheme requirements as they don’t have diagnosis or the reports required. The ndis claim that they listened to people having difficulty accessing the scheme and gaining assessments to prove their disability. That they were putting IAs in place to address that. They obviously have not listened effectively because an IA is only completed once someone has met access and does not reduce the need for reports and diagnosis.
lastly i wish to address reference term i:
as i understand it there is no avenue to review an independent assessment outcome. i am completely lost for words. This is just another kick to the stomach for people with disability, their families and carers. i have spent the last 13 years teaching my daughter and sons that their voice matters and that they can speak up if something is wrong. To take away the right to review decisions about IAs and the funding that they have informed says clearly to my daughter that she isn’t allowed to have a voice about her disability, that she is not being heard and most of all that according to the NDIS her individuality doesn’t matter, because she has a disability.
thank you for taking the time to read this submission, i can only hope that our voices are heard and that Australia continues to move away from our shameful past and into a more inclusive future.
Yours kindly,