SUBMISSION TO THE SENATE INQUIRY ON THE NDIS BILL
The introduction of the Bill on the last day of Parliament at the end of November 2012, and the closing date of 25 January for submissions from the public for consideration by the Senate Committee on Community Affairs has presented a great challenge for me. Although I have missed the closing date of 25 January, 2013 I am hopeful that my submission can be accepted.
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Note the stark difference between a person with autism/intellectual disability and a person with spinal cord injury As the mother of two adults with disability, a man aged 39 who has autism and intellectual disability and a daughter aged 34 who has paraplegia resulting from a mother vehicle accident I have a unique perspective on the folly of trying to see all people with disability as an homogenous group. My two children have totally different needs and capacities. My son requires 24/7 care and supervision and is still grappling with the complexity of choosing Vegemite or Peanut Paste for breakfast. Without my voice in any system, he is not heard. My daughter is married, has a child, a job and a Masters degree in Disability (service planning and design). She simply needs an accessible environment to function well. She does not need me as her advocate.
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The risk of not being heard I have spent much of the last 35 years knocking on doors to make sure that my
son perspective is heard. It is not easy because stereotypes about
difficult, controlling, over-protective parents abound in the world at large. My observation has been that many/most of the people who make very significant policy/service decisions move on and are usually not there to see (let alone live) the impact of their work. I have worked professionally in disability in both government and non government spheres and have spent a lifetime supporting/advocating/lobbying for better policy and support. As well, I have a Degree in Social Science (Disability) and even with all of these credentials I have to go on proving the point that I am a legitimate advocate and my insights in relation to are valid.
I am alarmed at some comments and in particular those from NCID and AFDO that both the NDIS Board and Advisory Council should be comprised of all, or at least a majority of people with disability. The Bill sets the Board at 8 members plus a Chair and then sets out four categories from which appointees can be drawn:
(a)theprovisionoruseofdisabilityservices;
(b)theoperationofinsuranceschemes,compensationschemesorschemeswith long-termliabilities;
(c)financialmanagement;
(d)corporategovernance.
None of these categories preclude the appointment of a person with a disability. The same can be said in relation to carers. Category (a) provides the opportunity for a person with a disability or a carer who does not fit into the (b), (c) or (d) categories to be appointed. This is most acceptable.
The Bill specifies the Advisory Council to have one Principal Member and not more than 12 members, of whom at least 4 must be people with a disability with skills, experience or knowledge relating to disability services and at least 2 to be carers with skills, experience or knowledge relating to disability services. This is most acceptable.
At the risk of going against the tide of political correctness I am bound to share the following extract from the NCID submission.
AllpolicyandpracticemustbecoherentwiththePrinciplessetoutinthe
Bill;forexample,ifpeoplewithdisabilityaretobeseentobecompetent,
ifpeoplewithdisabilityaretobeatthecentreandincontrol,thenthe
BoardoftheNDISandallcommitteesandadvisorygroupsmustalso
only(myemphasisadded)havepeoplewithdisabilityonthem-what wouldbethecaseforindigenousgroupsorwomen’sgroups?The onlyreasonthatthiswillnothappenisthatpeoplewithdisability (especiallypeoplewithintellectualdisability)areseenaslessthan−less thancompetent,lessthanequal.
It is fair to say that the complexity of material and concepts to come before an Advisory Council or Board would be beyond the capacity of people with an intellectual disability. In fact, many people without any form of intellectual disability would find the task extremely challenging. This is not to say that people with intellectual disability are ‘less than’ in terms of their human worth and dignity.
The submission from the Telethon Institute for Child Health Research provides excellent commentary on the unique needs of people with intellectual disability and the different dynamic that this establishes in relation to the role of families.
- Nominees 2
There is so much complexity and detail in relation to this aspect that I am not
confident that I will be acceptable as nominee. I am his nominee in
relation to Centrelink, Medicare, Medibank Private and of course I act on behalf with both of his service providing agencies (supported accommodation and day activity). I refer to my comments at number 2. above. Further barriers and complications are not welcome.
To date I have not sought formal Guardianship. At the time of the enactment of the WA Guardianship and Administration Act (1990) there were explicit directions that the various informal arrangements in place should continue until such time as they were no longer viable. It seems that I may have to seek this formal status in order to be seen as valid under the NDIS.
- Final Comments In closing I make the following points about what the NDIS needs to take into account:
Manage expectations Guard against gravitating to the easy end Ensure that no one currently receiving specialist disability support is worse off Agencies, not people with disabilities and their families should absorb the complexities around the NDIS Aim to build and strengthen the system, not reduce to a national level.
Di Shepherd
8 February 2012
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