From: To: Subject: submission re NDIS Date: Tuesday, 12 February 2013 3:01:10 AM
Thank you for the opportunity to contribute. I submit the essence of my experience for consideration in shaping NDIS legislation which will actually meet genuine needs.
All my statements in this submission can be corroborated by medical, and therapy reports, and Family Court documents.
HISTORY:
This submission is grounded in my personal experience as a Secondary school Teacher with 25 years of classroom and Administrative experience; a passion for Education; a Master’s Degree in Education; and a daughter of 17 whose severe
and complex disability needs - from a pre-term birth - necessitated that I
withdrew in 1995 from my Ph.D studies in Education; forewent my career; and became her full-time Carer/Home-schooler.
My choice was - to a great extent - ‘made for me’ . My daughter had demonstrated, (and still demonstrates) clear potential to benefit from therapy and education. I researched appropriate provision in Australia, and was profoundly disappointed to find nothing matching her needs . As an educator, I was not prepared to choose to abandon her to an educational/therapy system which offered no real hope.
I was advised by Perth’s leading Paediatric Neurologists : that in his experience, ..“if a child is not speaking by age six, they will never acquire speech”. At the time my daughter was almost six years old, and without speech. But she could read, at age three; and she could ‘finger-spell’. At age four, she demonstrated she could understand and recall French.
I was advised by the senior Speech Therapist - in one of Perth’s designated Language Centres : that children without speech left school at about age 15, very disaffected, hostile, and isolated by about , to go into a sheltered workshop.
I was so horrified by such a shocking acceptance of, and condemnation (for a 5 or 6 year old) to future despair. Such an attitude was evident defeat, without seriously trying! Immediately, I started seeking appropriate help beyond Australia . Fortunately I became aware of The Nuffield Centre Dyspraxia Programme in UK. In September 2001, my daughter was accepted into their two year programme of intensive speech and language therapy. The tuition fees were $75,000 AUD per annum. These were paid privately. After starting there in September 2001, she very quickly started acquiring speech sounds , which had been despaired of by her Speech Therapists in Perth. Within two years , my daughter had all speech sounds. She still speaks fluently. We returned to Australia in 2004.
Recommendations :
The experience of my daughter at the Nuffield programme in UK, has convinced me - as a parent, and as an educator of the morality, and necessity that :
Every child with disability has a right to best practice therapy and access to education, and so ameliorate the potential toll of the disability. Education is the circuit-breaker of the poverty cycle. Australia could/should - easily - create Specialist Therapy/Education centres in each capital city , to give these kids (and their parents) a ‘fair go’. Australia could/should - easily - send young graduate therapists - in the various disciplines - overseas on learning exchange scholarships to Centres of excellence (in the therapies and education) , to come back to Australia, after their one or two year scholarship, and invest their skills and expertise into each capital city’s centre for excellence. Australia has a chance to become the Clever Country! Australians
- all -will be able to rejoice: for we are young and free! The NDIS is the golden opportunity to legislate for this change. Denied therapy , and access to education ensures failure of lives; falling through the cracks into welfare and/ or unemployment, a poverty trap; frustration and anti social behaviour.
My present status quo:
Having spent my savings and superannuation , and now (since 2009) living on a Carer’s Pension (and sinking further into poverty), I am still educating my daughter who is progressing with Maths; Music; Science;Geography; other curricular subjects; and languages - French; Latin; Swahili; Gaelic..
Despite her progress, I am painfully aware of my limitations to deliver a broad and balanced curriculum - which in fact would require a team of experts. (It takes a village to raise a child! ) And these experts would be specialising in their fields in the interests of several young Australians, over several years. A win-win situation for many !
In Australia, my daughter has not received the early intervention, nor the follow-up therapy or education she would have received in another country - e.g UK (which I have witnessed) or Canada.
The lack of appropriate and necessary therapy here in Australia, for this young Australian , has not only profoundly disadvantaged her, but it has also cost me my present and future financial security; my independence from welfare; and my career. The experience has severely diminished our potential to contribute to the community; and diminished our quality of life. My daughter has recently been placed on a Disability Pension, as she still has unmet therapy needs (e.g OT ) to help her towards independence.
From discussion with many parents, and therapists, and carers of children with disability, I know my experience is not unique.
In W.A. there is a growing number of parents (of children with disability) who have withdrawn their children (with disability) from mainstream schools, in favour of home-schooling their children. The decision is forced upon them by the recognition that mainstream schools are not geared to cater for the special needs
of these special children .
Ironically, when we (parents of children with disability , now being home schooled) seek/request help/educational provision from the Home-Schooling section of The W.A. Education Department, we are told : ‘The Education Department does not provide materially for those who have elected to Home school their children. The view is that you have chosen to withdraw your child from what The Education Department provides…’ This is indeed ironic, as my initial Teacher training and first five years of teaching experience were with the W.A Education department. Iwas trained to identify that the starting point of all good curriculum design is THE NEEDS OF THE CHILD.
Families with the financial means to purchase therapy, and private tuition , do so. Their wealth ensures present and future provision and security, and life-quality for all the family .
Families without the financial means have no option but to accept the inadequate and fragmented , broken model of education and therapy. And accept a future of blighted potential.
The NDIS legislation has the opportunity to ensure that Australia’s systemic abuse by neglect stops. The NDIS must legislate that funding is made available for appropriate Education/Therapy for children with severe/complex disability.
OBSERVATIONS:-
For children with severe and or complex disability, in Australia ,law needs to be enacted to provide funding for Education/Therapy . Surely this MUST be made accessible, by NDIS, in order to enable these children , and their Carers , to avoid the present inevitable poverty trap which disability imposes on the child; the child’s family, and the child’s full-time (mostly un-paid family members who are the child’s) carers.
The child with disability who does not receive appropriate therapy is forever denied the tools to enable an access to education. That child’s future (without therapy and education) is far more bleak than the future of a child with equivalent disability , who has received best practice therapy and education .
The need is urgent. If we (Australians) are going to take seriously (and reflect in our legislation; and uphold in our values) the UN Convention on Human Rights that the individual has an entitlement to be Educated; have a dignified, healthy and satisfying life-quality; and have the opportunity to contribute to Society.
Full-time Carers - who are parents/family members of the child with disability are profoundly disadvantaged through their loss of career/earning capacity;
loss of savings or their superannuation through the added expenditure on therapies for the child;
loss of social inclusion/isolation;
loss of health and well-being
CONCLUSION:
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It is a false, dangerous and unjust premise to believe ( and perpetuate systems which ensure) that children with severe and/ or complex disability can and should receive their Education through conventional school curricula, delivered by mainstream teachers.
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Children with severe and/or complex disability , with unique and specific intellectual/cognitive/physical/affective needs require, and must receive their Education through a specifically designed curriculum which is tailored to their unique needs, and delivered by Specialist Educators and skilled Therapists.
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Without appropriate therapy delivered with best practice (to the child with disability) , that child is condemned to a future of thwarted - if not destroyed potential. Such systemic neglect is tantamount to abuse.
4 School Principals; class room and Subject Teachers; and teacher Aides (while being very well intended, and motivated) , rarely - if ever have the essential requisite specialisation to match the actual need. For the Educators to acquire some skill - at the time and expense of the child - is to subject that child to a ‘guinea-pig’ experiment. Valuable, irretrievable time is lost. Such is not Education. Sadly it is often baby-sitting, while the child’s actual needs go unmet.
5.There is a parallel with the medical model. A person with a diagnosed serious ailment (e.g complex Cardiac problems) is sent to a Specialist in the particular field. (In this hypothetical case, they are sent to a Cardiologist) The person is not sent to a Community Nurse , who has limited skill and facilities to match the complexity of the need. [I acknowledge Community Nurses provide essential and excellent service, in their field of expertise]. If a child’s life and future is worth saving, clearly best practice is essential to save that life and future?
- Through NDIS legislation, Australia is on the crest of a wave , which ‘taken at the flood’ will lead to a far more equitable, just, educated and compassionate society where all have dignity and a sense they belong, and their contribution is welcome. If the opportunity is missed or neglected, Australia compromises her moral credibility.
Yours faithfully,