Supports for people with disabilities throughout their lifespan

Committee Secretary

Senate Standing Committees on Community Affairs

PO Box 6100

Parliament House

Canberra ACT 2600

Australia

To the Senate Standing Committees on Community Affairs,

Re: National Disability Insurance Scheme (NDIS) Bill 2012 Inquiry.

The Youth Disability Advocacy Service (YDAS) is a Victoria-wide advocacy service of the Youth Affairs Council of Victoria. YDAS is funded by the Victorian government

to provide  individual and systemic advocacy  for young people with  disabilities

between 12 and 25 years of age.

Introduction - what young people with disabilities want from the NDIS Bill 2012

YDAS has consulted extensively with young people with disabilities about what they want from the NDIS. The key outcomes of our consultations are that the NDIS should:

Fund supports for people with disabilities throughout their lifespan. The benefits of a lifetime support scheme are significant. It would allow people to ‘age in place’ and maintain their existing support networks and lifestyle. Furthermore, it would facilitate continuity of support provision which is important for well-being and quality of life. It is likely that throughout life, the person with the disability will have developed strong informal support networks and effective means for meeting their support needs. This should not jeopardised by forcing the person into residential care.
Enable early intervention and supports to facilitate life transitions. YDAS strongly supports the need for effective early intervention measures to be provided as part of the scheme, these should be flexible and individualised. The wishes and needs of families and children with disabilities should remain central to

all early intervention processes. Timely and accessible information should be

provided about the range of interventions and services that are available and how and why they may be beneficial.

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Fund supports and services that are individualised, flexible and adaptive to peoples changing needs, choices and circumstances

YDAS strongly believes that supports for people with disabilities should be

individualised and flexible and enable them to work towards achieving their goals and living the life that they want. Victoria has been most progressive in moving towards an individualised model for the delivery of disability supports and we would like to recommend that supports under a new scheme are developed according to a similar model.

Individualised support arrangements in Victoria mean that disability services funding is allocated to each person with a disability for support to meet their disability-related needs. Funds may be used to buy a range of supports that are chosen by the person. An individualised planning process is undertaken to help the person and their family to consider how they may want to spend funding and what supports they want to access. Unlike previously, where funding has been allocated to service providers, funding is attached to the individual, meaning that people with disabilities can ‘shop around’ for services that best meet their needs. We strongly urge the Senate Inquiry to examine the disability service reforms that have taken place in Victoria (specifically, the Individual Support Package Guidelines).

Enabling people with disabilities to choose the services and supports they access would create a new accountability to people with disabilities as service users and provide a significant incentive for service providers to offer better-quality services. Adoption of an individualised model also allows for services and supports to be offered in innovative ways and for young people to use their funding for things that are not ‘traditionally’ considered disability supports, but are the best services to meet their needs. Preventative healthcare services (such as massage) are just one example of a ‘non-traditional’ disability support services, now accessed by some people with disabilities in Victoria as part of their individualised support package (ISP).

Enable timely and comprehensive responses so that people with disabilities are able to access all the supports they need, when they need them.

Under a new scheme, people with disabilities should have timely access to the supports they need. In particular, people should be entitled to a sufficient amount of paid attendant support and young people and family members should be able to access respite when needed. Delays in the provision of support can have much more costly outcomes in the longterm (see The Victorian Human Rights and Equal Opportunity Commission report “Desperate Measures” in May 2012).

Include assessments as needed that are fair, transparent, respectful, efficient, reviewable and easy to undertake.

Assessment for support under the scheme should not be unnecessarily intrusive or repetitive. Where a condition is expected to remain stable, assessment should not need to be repeated unless the person with the disability or family acknowledges changes to their needs or circumstances. People should be able to request re

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assessment if they have a change in their life circumstances or to gain the supports which will facilitate a life transition.

Assessment should not be about having to ‘convince’ assessors of a persons need and portray the person with the disability or their family situation in as dire state as possible in order to ‘prove’ the need for support. Assessment should recognise people with disabilities and families as experts on their conditions, circumstances and the supports and services they need. It is important that people with disabilities and families have a good understanding of the assessment processes. This can be enabled through the provision of accessible information and clear communication about assessment processes and outcomes.

Where  an  individual’s   disability  may  undergo  change  –  degeneration  or

improvement, reassessments and reviews should be available as needed. Where family or the person with the disability does not agree with an aspect of assessment,

there needs  to be an  accessible,  effective and  transparent appeals process

available.

Be free of means or asset testing. People who receive supports under the scheme should not have their entitlements effected by their income level or assets. Means testing would create both a barrier

and disincentive to participation in the workforce. Many young people with

disabilities, like other young people view employment as an important part of their lives and many aspire to achieve success in their chosen careers. Means testing of the support scheme will result in a perverse conundrum for people with disabilities

who  will fear losing  their supports  if they earn a decent income and become

successful in their employment. Asset testing will also make it difficult for young people to save which is essential for future planning, especially with increasing costs of accessible housing.

The NDIS Bill must rule out the future use of means testing and/or co-payment mechanisms which is of concern in an environment of fiscal restraint.

Offer funding arrangements that are flexible, individualised and controlled, to the extent that is desired, by the person with a disability including options for a financial intermediary, direct payments and direct employment.

Funding administration options under the scheme should include the full spectrum of control to enable people with disabilities to access the level of assistance and/or independent management of funding that they desire. Where a young person or their family want to have more control over funding and supports, they should have access to information and support that would enable them to do this. Options should include a financial intermediary model, as well as direct payments, where people with disabilities can have maximum control over their own funding and service arrangements.

Accountability  guidelines need  to be  clear and  accessible and  not  onerous.

Appropriate support with respect  to  accountability processes also need  to be

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available. These things will be necessary to enable the successful operation of these varied funding arrangements.

Fund supports in key areas of need including:

Aids and Equipment
Personal Care
Allied Health (when these are not sufficiently covered by the health sector)
Adjunctive Therapies (that will improve well-being)
Community Access
Leisure and Recreation
Home and Vehicle Modifications
Assistance with Transport
Employment Support
Sexuality and Relationships
Support for lifelong learning and
Mental Health Services 9. Address significant workforce issues, particularly those related to the

provision of reliable and flexible attendant support.

Many young people prefer support workers who are of a similar age to themselves, (especially when support was being provided for social outings). It is not always easy to find younger support workers as many employees currently in the workforce are of an older age.

Support staff who assist young people with disabilities should be:

Chosen by the young person with the disability.
Subject to the young persons/family/carers feedback and comments about the ways they are providing support or how this may be changed or improved.
Flexible in the ways they provide supports and able to provide assistance when and how it is required (although not to be detriment of their own health and safety).

• Dependable and skilled in providing supports, as directed by the young

person.

Able and willing to communicate with the young person (about their needs and wishes and more generally).
Committed to enabling and supporting the young person with the disability. YDAS would also like to highlight the following:
Being able to decide who provides personal support should be seen as a fundamental right of a person with a disability who has direct support needs.
Individualised funding with the option of direct employment arrangements are necessary for young people with disabilities to have maximum control over who provides their support.

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More needs to be done to attract younger workers to the field of disability support.
Support workers need to receive higher rates of pay however this should be accompanied by increases in support funding for people with disabilities so they are not effectively ‘penalised’ for this increase.
Formal qualifications should not be a requisite for people to work in the industry. Positive attitudes towards people with a disability should bare

greatest weight in choosing candidates to work in the disability field.

Include independent advocacy to protect and promote the rights and interests of people with disabilities who are recipients, or potential recipients of supports under the scheme.

YDAS strongly supports the funding of an independent advocacy that can be accessed by all people with disabilities. This must be funded and operationalised independently from the NDIS itself, but needs to be easily accessible to those who are seeking, or may benefit from independent advice or assistance relating to any aspect of the new scheme. YDAS also calls for advocacy support that is specifically available to young people with disabilities and designed to protect and promote their rights and interests.

11. Include an independent complaints handling body  that can respond  to

complaints about service providers.

This body would be responsible for making service providers accountable to the

National  Disability Standards.  It would also support the  resolution  of disputes

between service users and service providers.

Comments on the NDIS Bill 2012

Having  ratified the United Nations Convention on the Rights  of Persons with

Disabilities (including its optional protocol) in July 2008, the Australian Government now has a legal obligation to protect and ensure the rights and equal participation of

people with disabilities in  all aspects of Australian  life. The NDIS  Bill 2012 is a

significant and necessary step towards realising the rights and freedoms outlined in the Convention and with some improvements, as outlined below, would achieve far greater equality for people with disabilities.

The NDIS legislation should make provision for an appropriate proportion of NDIS funding to be allocated to the provision of independent advocacy

support to people with disabilities. In line with Productivity Commission

recommendations however it should protect the independence of advocacy by

providing  the  funding  to  another government agency  to  distribute and

administer. To allow for this there needs to be a new clause inserted into the NDIS legislation i.e. “ the Agency may provide funding to other government agencies, to be used for the purpose of ensuring that people with disabilities have access to independent disability advocacy.” A further clause should also

be included  requiring the  Agency to inform all potential and actual NDIS

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participants of their entitlement to independent support including independent advocacy support for any dealings that they may have with or related to the

NDIS. This  will  assist  in ensuring   that the NDIS  benefits those most

disadvantaged and marginalised in its target group.

Section 26 needs to be amended to recognise that access to the scheme should not depend on whether someone else provides information requested by the CEO. The entitlement for a person to access the Scheme should not be able to depend on whether someone else provides requested information. A prospective participant cannot be responsible for the actions of another person. Many professions and a range of State legislation controls the information that third parties are legally permitted to provide to others. There are a variety of public policy reasons why people in certain professions (for example lawyers, medical practitioners, advocates, psychiatrists etc) should not be compelled to provide information about their clients to third parties.
Section 30 needs to reflect the right to natural justice. The removal of support funding could have serious consequences for a person, including in relation to any contractual arrangements they may have entered into for the provision of

services, so it is vital that if revocation is to proceed sufficient notice of

revocation occurs to allow for a proper winding up of any support and

associated employment and  contractual arrangements.  Before  taking a

decision to revoke a person’s status as a participant in the NDIS the CEO should, in keeping with the principles of natural justice:

give notice of an intention to revoke and the reasons for this
offer the person the opportunity to present their case for continuation; and

• give due consideration to the person’s case before making any

revocation decision.

Section 33 needs to empower people with disabilities to plan effectively. The planning provisions appear to give ownership and authorship of a person’s support arrangements to the CEO. This will have the effect of removing from the person with disability, effective control and choice over key life decisions. It also has the potential to tie a person into support arrangements that are inflexible and inadequately responsive to the inevitable changes in a person’s wishes and life circumstances. Government should seek as far as possible by its processes, to enable people with disabilities to exercise effective control over their supports through:
Providing an indicative Budget that is capable of delivering reasonable and necessary support
Providing resources, as required, to enable support planning involving people of the person’s choosing
Approving a person’s Budget following consideration together with the person of whether the indicative Budget is sufficient to resource their desired support arrangements
Checking in that the person’s human rights are being respected and they are living as they wish.

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• Avoid decision-making about those aspects of a person’s life that

would not ordinarily fall within the purview of government for people without disabilities.

•  Section 34 should recognise that people with disabilities  will benefit from

maximum freedom and choice.  It  is not appropriate for the NDIS to  limit

innovation and creativity by determining for a person what will work best for them in their particular set of circumstances. Nor should the Scheme prevent people from working within a Budget to save money in one area so as to be able to afford something of particular importance to them in another area.

Section 34 (e) Reasonableness in this paragraph should have regard to:
what is normative support provided by family etc. to people without disabilities.
the willingness of a person’s family or community to step up in this regard – people with disabilities are not in a position to compel family or community members to provide them with support.
The willingness of the person with the disability to be supported by family (they may wish to live a life independent of their family)
Section 40 needs to be amended to allow people with disabilities to take extended holidays and/or vocational tours. NDIS supports should continue to be available, without CEO involvement, to people travelling overseas when they are undertaking a normative activity that does not affect their residency. For example young people commonly travel overseas for lengthy periods at the conclusion of their schooling.
Section 43 should permit the person with a disability to choose who they want to manage their plan. (1) People should be able to decide that their funding for supports will be managed by a non-registered person, for example a family

member, friend or generic community service. (3) If the participant is

prevented from managing their funding by the operation of section 44 they should still be permitted to specify someone else (not caught by section 44) do to it for them.

Section 66 disclosure powers of the CEO are too wide and contravene privacy laws and the UNCRPD. This provision gives the CEO unusually wide

disclosure powers in relation to the personal information of participants.

Consideration should be given to whether this is in contravention of Article 22 UNCRPD and/or could be regarded as indirect discrimination on the basis that this kind of information is not ordinarily obtainable by government, without the

person’s permission, about people other than those with a  disability.  It

potentially puts people with a disability in the position of having very large numbers of government officials and others know very personal details about their lives.

Chapter 4 Part 3 needs to permit people with disabilities to access a wide range of services including those offered by non-registered service providers.

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Chapter 4 Part 4 about children must give effect to the United Nations Convention on the Rights of the Child. There needs to be more detail about how the rights of the child will be protected and how decisions will be made in the child’s best interests in circumstances where the child is orphaned or relinquished. There need to be safeguards in place in circumstances where parents abuse or neglect the child.
Chapter 4 Part 5 on Nominees needs to include appropriate safeguards to prevent exploitation of the person with the disability by the Nominee. (5) This provision makes the plan nominee (if appointed by the CEO) the person who

decides on the level of involvement a person with disability has in the

determination and management of their plan. It gives the plan nominee power and control over a person’s life without an independent consideration having taken place by a properly constituted body of all the relevant factors. The duty of the nominee should be to act on participant instructions or in accordance with the framework established under Article 12 of the UNCRPD. Nominee appointments that occur, other than at the participant’s request, should be made by an independent body (not the Agency) having taken into account the views and interests of the person with disability.

Chapter 4 Part 6 on Review of Decisions should ensure that “the reviewer” is independent and impartial. These reviews should consider how decisions comply with Human Rights Legislation and the UNCRPD in particular. All decisions of the CEO affecting the rights or interests of a person with disability should be subject to merits review, not simply those listed in this section. This is because each decision has the potential to dramatically influence the life opportunities and choices available to the person with disability. All CEO decisions unfavourable to the person with disability should have reasons provided with the decision. The Act should permit a broader group of people to request the review of a reviewable decision including those representing the interests of a person with disability and those representing the interests of a class of affected or potentially affected people with disability. The reviewing Tribunal should be free and accessible to people with disabilities. Legal representation should not be required but if it is needed it should be provided at no charge. The reviews should be conducted in a timely manner and should not take more than 21 days.
Chapter 5 Part 1 about Compensation, needs to be mindful that most people with disabilities, eligible for the NDIS, will have limited financial resources with which to pay the ongoing costs of legal action and may be unwilling to risk the loss of any existing assets to cover cost orders. This means that action, in many cases would only be possible if Legal Aid or Community Legal Centres were to provide the necessary legal representation. At present, given the level of demand on their services, this is not likely without these agencies receiving dedicated funding for this purpose. Rather than require the person to take action, the action could instead be taken on their behalf by the NDIA as per section 50 of the Safety Rehabilitation and Compensation Act 1988.

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Chapter 6 Part 2 about the Board of the NDIS Launch Transition Agency, must ensure that board membership includes people with a disability who have a solid understanding of the perspective of a service user.
Chapter 6 Part 3 about the Independent Advisory Council, should include the function of providing advice to the Board about the way the Agency meets the Section 3 objects of the legislation, as well as UNCRPD compliance. The majority of members should include people with a disability who have a solid

understanding of the perspective of a service user. Termination of

appointment must be accompanied with appropriate reasons for termination.

YDAS would like to thank the Australian Parliament for the opportunity to have input into the NDIS Bill 2012. We strongly support the introduction of the NDIS as a human rights based, long-term disability support scheme, which will create equity, security and improved quality of life for people with disabilities.

Yours Sincerely,

Dr. George Taleporos

Manager

Youth Disability Advocacy Service

Acknowledgment: Thank you to all young people with disabilities who continue to inform our policy work and to Andrea Simmons from the Disability Advocacy Network Australia (DANA) for her expert knowledge about the legislation.