Submission

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Senate Community Affairs Legislation Committee Inquiry National Disability Insurance Scheme Bill

22 January 2013

Written by Jean L Tops – President

For and on behalf of The Gippsland Carers Association Inc PO Box 937, MOE VIC 3825

Preamble:

The Gippsland carers Association has for the past 15 years offered a voluntary support service to the family carers of Gippsland. We provide information, education, support and peer advocacy and manager carers Centre located in Morwell, which is open three days a week to carers and the general public.

Throughout this time the Gippsland carers Association has taken every opportunity to raise issues of direct concern for the people with disabilities who require support and who receive that this support predominantly from the family home.

Critical in these concerns has always been the failure of the current disability support system to meet even the urgent support needs of those who have a right to expect a comprehensive service system that matches and even betters that which the Commonwealth government has delivered to aged citizens over decades.

Major stumbling blocks in the current disability support system include the perennial arguments between states, territories and the Commonwealth over who shall be responsible for funding the disability support system and the system’s inability to allow people with disabilities to take their support services across state borders. These concerns remain current and will be addressed in our comments about the current planning for the National disability insurance scheme.

It must be stated at the outset that the Gippsland carers Association and its members were very pleased when the Government announced the ‘Inquiry into disability care and support’ and equally as pleased with the Productivity Commission findings and recommendations. The government’s commitment to ensuring that the National disability insurance scheme would come to fruition is applauded, however, the implementation process as outlined in the disability Bill holds grave concern that all the good work is set to be undone.

Because we are a voluntary association made up almost entirely of family carers and former carers, we lack the time to deal with all the issues that now manifest themselves in the NDIS Bill currently being examined by the Senate Committee. This being the case we wish to outline in the strongest possible terms, our concern over the following issues:

1. NDIS Funding Regulations

The Commonwealth government decision to continue the policy of seeking state funding in combination with federal funding means that we see this as a failure of the Commonwealth government to accept the clear ‘Primary Recommendation’ of the productivity Commission that the funding of the National disability insurance scheme should be ‘core business’ of the Federal government.

Our major concern

Our major concern is that if this particular Legislation is to be pursued;

(a) there will have to be watertight guarantees that funding allocated under individual support plans will be transferable across state borders in spite of the fact that the states are contributing financial resources to the program and;

(b) watertight guarantees that the current perennial argument at COAG over funding share and funding increase will cease. We have no confidence this will occur unless mandated.

(c) Caring families are expressing their real fears that the States and Territories may take the same line as they have previously i.e. that State/Territory funding stays with the said State/Territory thus creating the same discrimination as that which currently exists.

2. The Rules and Regulations of the NDIS

It is a fundamental concern of caring families that the same people who have presided over the failed state-based disability support system are now deeply involved in the planning and policy processes of Legislating the National Disability Insurance Scheme.

Given the very clear messages from the Productivity Commission and indeed from government policy makers that unpaid family carers will continue to make a very large contribution to the welfare of people with disabilities into the future; the amount of support that grass roots caring families have to input into this entire process is disheartening and indeed quite disgraceful.

A ‘once off’ regional consultation by a national collective of peak bodies is hardly sufficient input for those carers unable to attend on the day, let alone those carers who had no idea of the event due to little or no information.

(a) It is in the best interests of people with disabilities that carers are supported at the grass roots of care; thus ensuring the NDIS will not fail into the future.

(b) Research has clearly shown that carer wellbeing is at the lowest end of the wellbeing scale; it is our experience (over 15 years) that local carer networks funded to provide peer support and advocacy go a long way towards encouraging carers to continue to care.

(c) The legislation for the disability Bill implementation must clearly recognise that funding Regional Carer Support Networks is vital to ensuring unpaid family carers will continue to care after NDIS begins enabling carers to have a direct say in policy and planning.

Recent correspondence from the Minister for FACSIA and Disability Reform, the Hon Jenny Macklin, to our local FMP for Gippsland Darren Chester, indicates quite clearly that (a) “there is currently no program funding available from her Department to support the Regional Carer Network proposal”

(b) the same correspondence from the above Minister shows a clear dismissal of the urgent need for individual carer support by suggesting that there will be increased flexible respite as an ‘ad hoc way’ of ensuring carers have the local support they need. We are clearly offended by this casual and insensitive remark. Maintaining carers as the majority care provider under the NDIS will fail unless this attitude to unpaid care is quickly reviewed.

3.  Part two - participants plans -Principles relating to plans.

 We express our concern that the Productivity Commission Recommendation that
   "family carers be entitled to be assessed at the same time as the person with a

disability is assessed “ under a National Disability Insurance Scheme, does not appear to be clearly stated in the NDIS Bill!

      It further concerns us that the pecking order in measuring the supports available and/

or needed, makes it very clear that the expectations will be first of all, what families can provide, what the community services system can provide, and what the community at large can provide, before any NDIS funding will be considered.

  There is a real and present danger that the coercive tactics previously undertaken in
   the state manage system may be brought into play in the NDIS assessments unless
   there are clear guidelines that:

(a) ensure a carer/family assessment of need is conducted in conjunction with the person with a disability, where requested;

(b) ensure that any suggestion of ‘community involvement’ is clearly at the behest of the person with a disability and/ or their carer, as to suitability to the persons desired plan.

4.  Supported accommodation under the NDIS

The are no contingencies within the NDIS Bill for the provision of supported residential services save that “they will have the same meaning as found in the Aged Care Act”. This clearly suggests that the aged care facilities model will be considered in the NDIS planning.

This proposal flies in the face of current state/territory management where supported accommodation is limited to 6 bed facilities (group homes) and at best 10 beds in nursing level of care facilities.

There needs to be clarification as to the Federal Governments plans to provide High and Low Care Residential Accommodation including funding for Capital Works and any limitations thereto?

Part 5 - Nominees

Section 88 - Provisions relating to appointments

Sub section (4) states that the CEO must have regard for whether a person has guardianship of the participant but, fails to take into account the appointment by state authorities of Financial Administrators…. these are more commonly appointed than Guardians….

(6) There are all too often occasions where family and or family carers have had their authority challenged by service providers. These challenges often involve undue influence by services that may disagree with a family or may be in conflict with a family over best practice care for the person. This undue influence has all too often manifest in a person with limited understanding being coerced or coached into a request that may not be in their best interest.

There do not appear to be any safeguards for caring families in this matter and the ability of the CEO to cancel an appointment under section 88 and 89 do not specify the criteria for refusal or cancellation. This could be a ‘can of worms’ if safeguards are not carefully applied.