Advocacy for people with disabilities, older adults, and caregivers in the NDIS

Senate Standing Committee on Community Affairs

Exposure Draft of the NDIS legislation

Submission by the ACT Disability, Aged and

Carer Advocacy Service

ACT Disability, Aged and Carer Advocacy Service (ADACAS) asserts, promotes and protects the rights and responsibilities of people with disabilities, people who are older and people who are caregivers. We vigorously advocate for and with vulnerable people who have a disability, are older, or their caregivers so that they may exercise their rights as citizens, live valued and dignified lives in the community and pursue their dreams. ADACAS acknowledges the Ngunnawal people as the traditional owners of the land on which we work.

© Copyright ACT disability, Aged and Carer Advocacy Service

January 2013

This publication is copyright. Non-profit associations and groups have permission to reproduce parts of this publication as long as the original meaning is retained and ADACAS is acknowledged as the author. Others seeking to reproduce material from this publication should obtain permission of the CEO of ADACAS

A.C.T. Disability, Aged and Carer Advocacy Service Inc. ABN 15 750 251 576

Suite 104, Block C, Canberra Technology Park, Phillip Ave, Watson PO Box 144 Dickon, ACT 2602

Ph: (02) 6242 5060  Fx: (02) 6242 5063  TTY: 133677 (NRS)                    Email: adacas@adacas.org.au Web: www.adacas.org.au

1.  Introduction……………………………………………..   1

2. Recommendations…………………………………… 2 3. Big Picture System Design……………………….. 3

4.  Structured Inequality……………………………….   5

5.  Decision Making……………………………………….   6

6.  Assessments for Eligibility and Support……   8

7. Advocacy…………………………………………………. 9 8. Flexibility and Innovation………………………… 12

9.  Having Their Say Project – Client’s Stories..   14

Introduction The A.C.T. Disability, Aged and Carer Advocacy Service (ADACAS), is pleased to have to have the opportunity to provide comment on the National Disability Insurance Scheme (NDIS) Exposure draft. Our clients are people with disability who require advocacy support in order to attain and sustain fulfilling lives. Our advocacy is funded through a number of State and Commonwealth funded programs, it is provided free of charge and is independent – enabling us to provide free and fearless support to people with disabilities and ensure that their voice in heard in matters that affect their lives.

ADACAS recognizes that the NDIS has the potential to be the most significant change for the better in the lives of our clients, in their lifetime. We have and will continue to participate strongly in systemic advocacy work at both the State and Commonwealth level to ensure that the dreams of the NDIS are realised as real empowerment, choice and control for people with disabilities into the future. As part of our current systemic work, we undertook to enable some of our clients to have their story heard; about their lives and what they want; about their plans for the future NDIS and how they would like it to work. The ‘Having Their Say’ Project, interviewed 12 individual ADACAS clients, people with disabilities who, because of their circumstances would otherwise not have the opportunity to participate in the development of the NDIS. This submission brings to the Senate Committee, the voice of some of the most marginalized and vulnerable members of our community. Their full stories are included as appendices to our submission; their voice is heard throughout it. In addition to making the recommendations contained in this submission, ADACAS would be pleased to have the opportunity to discuss our concerns about the legislation in person with the Committee during any hearings that may be undertaken.

Recommendations Based on feedback received as part of the Having their Say Project, and the information gathered through our systemic work, ADACAS makes the recommendations outlined below.

Recommendation 3.1: That the NDIS legislation fully incorporate the principles articulated in the United Nations Convention on the Rights of Persons with Disabilities. Recommendation 3.2: That the NDIS legislation incorporates a human rights framework, and remains general enough to allow for details to be made and varied as necessary in the NDIS rules and related policy.

Recommendation 4: That language and processes more accurately reflect the tenor of the Act as promised in the Objects and Principles, and do not structure a relationship in which people with disability are required to be submissive.

Recommendation 5.1: That the NDIS legislation specifically recognise the necessary role of decision support as a mechanism for enabling choice and control. This enables fulfillment of the right of people with disability to enjoy the same legal rights, including the right to make decisions, as others in our community.

Recommendation 5.2: That the NDIS legislation recognise current state and territory substitute decision-making mechanisms regarding guardianship and financial management, and not put in place additional mechanisms for substitute decision-making.

Recommendation 6.1: That where assessment is requested by the CEO, additional to existing reports, the legislation recognise the long waiting times and costs associated with specialist appointments and assessments and provide for timeframes that realistically reflect this.

Recommendation 6.2: That all decisions made about a participant’s interaction with the NDIA, a satisfactory justification for the decision must be provided to the participant.

Recommendation 7: That the right to, and the provision of free independent advocacy is unambiguously embedded in the NDIS legislation by including a clear statement of principle; an appropriate definition of ‘Independent advocacy’; and by inserting a new section that provides for funding, separate to the NDIA, to facilitate independent advocacy.

Recommendation 8: That if the detail of processes and procedures remains in the legislation, the provision of flexible and innovative supports is not limited by undue bureaucratic processes, but that the legislation allows for, and where possible, actively stimulates flexibility and innovation, thereby facilitating choice and control by participants.

Big Picture System Design The NDIS is an important step in social reform in Australia that follows the ratification of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). ADACAS believes that the NDIS legislation should fully incorporate the principles articulated in the Convention. In particular it should incorporate into section 5 the recognition of the legal right of participants make their own decisions, exercised with as much supported as is needed, so that people with disability to make as many decisions for themselves as possible (strengthening 5(a) in the draft). The UNCRPD notes that it is the responsibility of states to provide for this support. The judgments and decisions that people with disabilities would have made for themselves should guide the judgments and decisions that are made by others on their behalf (strengthening 5(c) in the draft).

The NDIS implements Australia’s obligations under the convention and establishes a system that recognizes the right of people with disabilities to live lives with equivalent opportunity to that enjoyed by other Australians. It is this focus on rights which needs to be central in the NDIS legislation.

Recommendation 3.1: That the NDIS legislation fully incorporate the principles articulated in the United Nations Convention on the Rights of Persons with Disabilities.

Consistent with good practice in legislative design, the NDIS legislation should confine itself to those elements that set the principles, objectives and design framework for the NDIS, and leave process issues, detailed systems and other matters to regulation, rules and policy. Mindful of upholding the principles of personal choice and control, Duffy and Williams (20121) assert that government needs to have control over decisions that are limited to the following areas:

The amount of public funds available to the person
The ‘signing off’ of the person’s plan so that they can receive their entitlements
The decision to evaluate whether subsequent support arrangements helped to advance the person’s life chances

ADACAS recognizes that there is a significant level of detail in the exposure draft which goes beyond principle and design. Issues of compliance, assessment, and review for instance should be covered in regulation or policy rather than in a legislative instrument which is more fixed than these other, more

1 Duffy, S. & Williams, R. (2012). The road to NDIS: Lessons learned from England about assessment and planning. Purple Orange: South Australia. 3

flexible documents. ADACAS supports the clear statement of principles in sections 4 and 5 of the legislation (noting comments above and with an additional principle on advocacy as proposed below: see part 7 of this submission), and the establishment within the legislation of the NDIA as the agency charged with implementing a system that achieves these principles.

We note that much of the exposure draft takes a risk management, or risk mitigation approach to the NDIS. It seeks to establish a compliance regime, review mechanisms, registration and regulation of service providers and the like. While we appreciate that risks are inherent and must be considered in system design, we propose that rather than risk mitigation the principle focus should be on risk enablement. That is, how can people with disabilities be enabled to “realise their potential for physical, social, emotional and intellectual development” while also safeguarding individuals against abuse by others, and the system against fraud, misuse or inefficiency. Risk enablement identifies a risk and rather than mitigating against it, identifies strategies that enable an individual to try, to perhaps fail, to learn from the experience and then try again. The exposure draft’s emphasis on risk mitigation constrains the principle that people with disability have the same right as other members of Australian society.

In the words of a person with disability:

My situation is quite complex, what I would like from the NDIS:

I would like to know upfront how much money I am entitled to so that I can plan appropriately.
I would like to be in control of my own funding.
I would like an assurance that there is continuity so that my needs are met in the long term.
I would like freedom, privacy and space in my future living arrangements.
I would like to decide who will provide care for me and what services I use.
I want to have genuine choice – not limited by what others determine is right or best. (Having Their Say Project: Leanne (42), who has cerebral palsy and needs 24 hour care)

Recommendation 3.2: That the NDIS legislation incorporates a human rights framework, and remains general enough to allow for details to be made and varied as necessary in the NDIS rules and related policy.

Structured Inequality The Object and Principles rightly determine the necessity for people with disability to have choice and control in their lives including access to quality and innovative delivery of supports (subsection 3(1)(f)); to determine their own best interests, exercise informed choice, and engage as equal partners in decisions that affect their lives (subsection 4(8)).

For people who do not live with disability, the respect for a person’s centrality to decision making processes throughout their lives, and the assumption of their capacity to engage in them, goes without question in the broad community, until evidence suggests otherwise.

Not so for people with disabilities. Their experience is of being controlled.

You’re told you must do as they say, even though it maybe the wrong advice. I’m not heard; I’m not listened to. Ultimately I should make the decision. No matter how sick a person is they are still entitled to their own views and opinions. (Having Their Say Project: Jenny is diagnosed with schizophrenia and reacted badly to the anti-psychotic medication prescribed)

Not so in this exposure draft either. The NDIS is about change; the legislation must lead this by reflecting a change in the relationship with, and respect for people with disabilities.

The language used, and level of detail contained in the body of the Exposure Draft clearly places the person with disabilities in a submissive position in relation to the Agency. The participant must at all times ‘seek’, ‘request’ and ‘submit’; their plan of supports cannot be varied without doing so. The CEO ‘appoints’, ‘decides’, ‘determines’, ‘approves’, ‘provides’, ‘suspends’ and ‘revokes’.

Rather than demonstrating respect and assuming engagement of participants ‘as equal partners’ (subsection 4(9)), the Bill appears to give authority, authorship and ownership of the participants’ engagement with all aspects of the NDIS to the Agency, from eligibility, assessment, planning and review, and in doing so perpetuates the existing culture of people with disabilities as deserving beneficiaries of a benevolent system rather than people with disabilities exercising and controlling an entitlement to supports that enable them to live independent and fulfilling lives.

The NDIS gives hope of being able to buy services and supports, not beg for them. (Having Their Say Project: Allison (31) who has MS and a small daughter with developmental delay)

Recommendation 4: that language and processes more accurately reflect the tenor of the Act as promised in the Objects and Principles, and do not structure a relationship in which people with disability are required to be submissive.

Decision-Making The UNCRPD recognizes that all people with disabilities have legal capacity on an equal basis with others and that some people will require decision support to exercise this capacity. It is important that the NDIS legislation makes a clear statement recognising the right of people with disability to decide for themselves and acknowledging the importance of support in achieving this right. This premise must form the foundation upon which all actions of the Agency are built.

Nationally and internationally there is now greater recognition of the need to enshrine supported decision making in legislation that deals with capacity, including guardianship legislation. Increasingly, debates are framed, not in response to a perceived lack of capacity, but in how support services might be developed to build and develop an individual’s ability to decide. This shift can be seen in Australia in the Victorian Law Reform Commission report into Guardianship2, in the South Australian trial of supported decision making3 and in the other work occurring around the country that seeks to deliver on the UNCRPD principle of assuming capacity of people with disabilities.

In addition to inserting a principle about assuming capacity of participants, the legislation should respectfully assume the participants’ capacity to decide. For example, replace ‘with’ with ‘by’ in subsection 33(2), ‘A …plan must include…the statement of participant supports prepared [by] the participant’.

In order to accommodate varying decision making capacity, reference can be made to the strengthened principle (subsection 4(9)) ‘People with disability should be supported in all their dealings with the Agency [and others] so that their capacity to exercise choice and control is maximised in a way that is appropriate to their circumstances and cultural needs.’

By the current use of language and the detailing of processes that does not respectfully assume capacity, the Bill further reinforces the imbalance in the power a person with disabilities has to choose and control their life.

You don’t have a say in what you do; people try to make decisions for you. (Have Their Say

Project: Allison)

2 Victorian Law Reform Commission. (2012) Guardianship: Final Report. Melbourne. Victoria Law Reform

Commission. 3 Wallace, Margaret. (2012) Evaluation of the Supported Decision Making Project. Adelaide. Office of the Public Advocate. 6

Substitute Decision-Making Arrangements and the Role of Nominees

The exposure draft provides for the appointment of ‘plan nominees’ and ‘correspondence nominees’ to assist people in gaining information, planning and in making decisions under the NDIS. The draft rightly enables participants to appoint, of their own free will and at their discretion, a nominee to act on their behalf; it also confers a power on the CEO to do so.

Clause 78(5) enables the CEO to appoint a plan nominee in relation to ‘the preparation, review or replacement of the participant’s plan’ or ‘the management of the funding for supports under the participant’s plan’. However the draft does not include safeguards to ensure that people with disabilities have a say in the CEO’s decision, and this power appears to duplicate the guardianship powers currently enshrined in state legislation. Conferring this power on the CEO is inconsistent with the principles articulated in subsections 4 (6) and 4(7) that people with disabilities have the same rights as other Australians. It is not appropriate for the CEO to assume quasi-guardianship appointment powers without the safeguards that are afforded by tribunal systems within each jurisdiction, rather ADACAS believes the NDIS legislation should cross reference to state guardianship laws and that these established processes should be used to appoint nominees without the participants consent only if there are grounds to do so.

Recommendation 5.2: That the NDIS legislation recognises current state and territory substitute decision-making mechanisms regarding guardianship and financial management, and not put in place additional mechanisms for substitute decision-making.

Assessments for Eligibility and Support People with disabilities are all too familiar with the health system, they may have to structure their daily lives around the availability of medical professionals, treatment regimes, medication reviews and the like.

– next thing you know I’m being diagnosed with Asperger’s, depression, psychosis, borderline

personality ;  I was diagnosed with 13 different disorders– no doctor can tell me what  I have

which is driving me nuts- (Having Their Say Project: Sarah (23))

There are current moves to reduce the burden of the health system on people with disabilities and others who interact regularly with a range of health services. The introduction of e – health records for instance, seeks to reduce the duplication that people face each time they see a new specialist or staff change within service providers.

I refuse to tell my story again to another person – you can’t deal with today’s problems when you have to discuss yesterday’s problems over and over again! (Having their Say Project: Stephanie (44) who lives with constant and universal pain)

The exposure draft enables the CEO to request additional assessments of people with disabilities (subsection 26(1)(b)(i) and (ii)) but it does not require the CEO to justify the decision to seek these assessments or provide any limitation on the frequency of such requests. People with disabilities have often already told their story many times, been assessed by numerous specialists and subjected themselves to a battery of tests and explorations.

I’m sick to death of telling my story over and over again. (Having Their Say Project: Sarah)

People with disabilities often live on low incomes and cannot afford yet more expensive medical opinions. Access to medical specialists nationally is characterized by costly fees, and long waiting times, generally well beyond the 28 days allowed for in the exposure draft. It is therefore imperative that the legislation takes this into account when prescribing timeframes.

Since a requirement for further medical assessments could become a barrier to a person seeking NDIS support it should be accompanied by satisfactory justification. Given the potentially significant impact on people’s lives of decisions made by the Agency, this requirement to justify a decision should be applied to all decisions taken by the CEO.

Recommendation 6.2: That all decisions made about a participant’s interaction with the NDIA, a satisfactory justification for the decision must be provided to the participant. 8

Advocacy Just as ‘money doesn’t make you happy’ neither does it solve all problems.

Individual backgrounds, personalities, and societal attitudes don’t change with the injection of funds represented by the introduction of the NDIS.

A lot of people’s circumstances will change only very slowly, if at all:

Sometimes I get stuck and need someone to speak on my behalf, someone to be there with, that I have a relationship with, someone who knows me – to say, yes she has a mental health issue, but it is under control, and vouch for me. With the NDIS I would need help planning and deciding on what my options are. (Having Their Say Project: Leigh Anne (49) who has a diagnosis of schizophrenia and had a stroke 10 yrs ago)

He [my advocate] helped me move out of my parents’ house to this one and now he’s helping me move again to be able to live where I went to school. I like that area. I couldn’t do that by myself, I need someone to help me. (Having Their Say Project: Stephen (29) who lives in supported accommodation)

Under the NDIS there will be an ongoing need for independent advocacy to ensure the expressed wishes of all people with disability are respected:

during eligibility or assessment processes;
to challenge the merits of a decision;
to challenge the validity of a procedure or process;
when an issue or conflict arises with the funding body or specialist disability service provider;
to resolve rights or well-being issues;
to effectively engage in service quality processes; and
when an issue arises with a mainstream provider or system. I’ve been working with [an advocate] who I get along with and really connect with – she’s helped me more in a year than I’ve been able to work out with housing by myself in 13 years. I’m not managing, I’m in constant agony most of the time; there are lots of things that I need done, and that’s when I have anxiety and panic attacks – so I need someone to act on my behalf. (Having

Their Say Project: Stephanie)

Under the NDIS there will also be a need for independent and systemic advocacy to:

ensure that all people with disability are able to access necessary supports and services;
counter external forces seeking to reduce the public contribution to disability support;
identify and respond to gaps in the supports provided; 9

promote support options for people with disabilities that comply with the UNCRPD;
address the barriers to rights realisation, economic participation and social inclusion for people with disabilities across all parts of society; and
counter the tendency of governments to continually increase control over the expenditure of public monies.

In the Aged Care Act 1997, Government recognised the vulnerability of people covered by the Act. It was recognised that dependence on a system, agency or individual has an inherent power and status differential. In order to provide for some balance the Aged Care Act makes provision for the right to and the funding of advocacy (Section 81-1).

So should it be with the NDIS.

For me it is new to have choices, to be given options. I want to be assisted by an advocate who is outside the (NDIS) system. (Having Their Say Project: Leanne)

To ensure the independence of advocacy the management of advocacy funding should be undertaken by a Commonwealth entity that is separate from the Agency. This is consistent with the National Disability Framework (2012).

The government precedent exists in The Aged Care Act 1997 Section 81.1 –Advocacy Grants and provides the following model for advocacy and the NDIS. Such a model would promote the certainty that clients are seeking and ensure that :

(1) The Secretary may, on behalf of the Commonwealth [and via a Commonwealth entity that separate to the NDIA], enter into a written agreement with a body corporate under which the Commonwealth makes one or more grants of money to for the following purposes:

(a) encouraging understanding of, and knowledge about, the rights of [participants] and potential [participants] of [the NDIS] on the part of people who are, or may become:

(i) [participants]; or (ii) people caring for [participants]; or (iii) people who provide … [supports and] services [to participants]; or on the part of the general community; (b) enabling [participants] to exercise those rights; (c) providing free, independent and confidential advocacy services in relation to those rights to people: (i) who are, or may become, [participants]; or (ii) who are representatives of [participants] .

I’ve had an advocate who works for me and listens to what I want, and I know I need to have someone like that with me. It’s so important to have someone independent beside me to help say what I want so that I am listened to. (Having Their Say Project: Jenny)

Flexibility and Innovation Respecting and promoting choice and control requires that all processes at least allow for, if not stimulate, flexibility and innovation. As it stands, the explicit determination of process detailed in the Bill potentially gets in the way of flexibility, innovation and spontaneity in the lives of participants.

The Bill places participants’ plans, particularly the Statement of Goals and Aspirations, at the gravitational centre of the entire enterprise. It becomes the singular instrument by which supports are determined and measured.

The requirement for this statement is, in itself, discriminatory: no other group or individual in our society must submit a list of life goals and a plan before getting on with living; neither must they seek permission before changing their mind.

While it is understood that plans for provision of supports must be based on the needs articulated by the participant, the emphasis in legislation on this singular tool threatens the principled tenor of the Act, that of respect and ‘right[s] equal to other members of Australian society’ (subsection 4(6)).

It also threatens the functionality of plans by either a) necessitating that the goals on which they are premised be specific, resulting in potentially strict and limiting plans (a change to which must be ‘requested’ of the CEO), thereby reinforcing the lack of control commonly experienced by people with disability; or b) necessitating the goals be open, generic and meaningless to the individual, thereby reinforcing the discrimination inherent in its requirement in the first place.

Further, the requirement existing in the Exposure Draft (subsections 47-50) that a participant must request a review of their plan, which may be accepted or refused by the CEO, significantly limits flexibility, spontaneity, creativity and innovation.

If legislation retains detail of processes, it needs to clearly reflect it’s own objects and principles and not stifle flexibility, innovation and sponaneity with bureaucratic processes that aim to capture all variation of decision making capacity within the population, and all risk contingencies and accountabilities. This level of detail would be better served in the Rules and in Policy, which is more accessible for variation according to experience, general societal innovations, and requirements of locality.

Similarly, the complexity of registration to be a provider of supports (subsections 69-73) diminishes flexible solutions to support that anyone else in the community can access.

The services have to be there. It concerns me that existing service providers are merging. It seems they’re trying to create a one-stop-shop which will potentially dominate the ‘market’ and eliminate choice. It’s important that there is an understating of how many gaps there are

in the system. The ‘market’ has to accommodate people’s actual needs. (Having Their Say

Project: Allison)

If the participant’s plan and funds are managed by the Agency (by choice or by appointment) the supports are to be provided only by a registered provider of supports (subsection 33(6)). (It is not clear what limits are imposed on other managers.)

For example, a participant lives independently but requires support with some aspects of daily living and household maintenance and these are activities identified in the NDIS support plan. The participant learns that the teenager next door is willing and able to do the mowing on a regular basis. Employing the teenager will facilitate interaction with the neighbours and expands the participant’s circle of friends and acquaintances; it will potentially lead to greater social inclusion, and raises community awareness of the participant specifically, and people with disability generally. However as the teenager is working for pocket money, the complexity of the process to become a registered provider under the NDIS is not appealing and the teenager next door is highly unlikely to register. Therefore NDIS funds cannot be used for this purpose and the wider outcomes of social inclusion, increased community awareness and neighbourhood building are missed.

The registration requirement is not commensurate with such flexible and low risk services and has the potential to leave participants unable to truly exercise choice and control over who provides their services and how they are provided.

The Bill as it stands establishes a barrier to flexibility and innovation.

Genice’s Story.

I’m 42 years old. I have tunnel vision and I have learning problems, including dyslexia – this means I can take things in slowly, I have trouble remembering things. Doing things with ‘vision’ helps – I have been driving since I was 20; I visualise my routes and use landmarks to navigate when driving. I am adopted - dad and my brother, with his family, live in Canberra; my adopted mum died in 2009. 7 years ago I got in touch with my birth mother and my 4 siblings who live interstate; she and 2 of my siblings also have the same learning difficulties. I need help with budgeting and managing my money – dad is helping me with this at the moment. Dad is currently helping me move into my new flat; I have tried living in shared accommodation this has not worked out for me.

I began figure skating when I was 8 and pursued that for 32 years. With skating I felt like I had achieved what I wanted to, and so I wanted to try something different. So I in 2003 tried 10 pin bowling in a disability league for a while; I asked my manager to be my financial guardian and she did this for 1 ½ years. The team went away a few times, my fiancé was part of the team too, I had a great time – but then things ended between us, I left the league and also ended my relationship with the team manager too. It was hard – for people with disability, we let people take us in, they put out a good impression, then you find out their bad side and get hurt; and we don’t know how to pull ourselves out. She also did not like me having contact with my family. So with nominees, people with disability should have a choice but sometimes people can take advantage of this. I now swim, and in 2007 I won 3 gold medals at the Special Olympics in New Zealand! I train 3 days a week in a squad with various ages and really enjoy it.

I worked in disability services as a disability support worker for 12 years – 10 in a home and 2 in a school. Then mum helped me to complete my Certificate in Child Care at CIT and I worked in a child care job for a year when I had a fall which really hurt my back - that was middle of last year. For the past 4 months, I have been working 4 days a week sorting mail for a government department; they’re 6 hour shifts beginning at 6:30am. Yes, I would like to keep working but I would like a job that is appropriate for my experience – I really value and enjoy helping and caring for others. I got a

14 Having their Say Project ADACAS 2013

lot of achievement out of that work, but because of my fall, it’s not reality. I would not be able to do another course at CIT because mum is not around to help me like she did before she died. Going back to disability support work would be more fulfilling for me than sorting mail – I would need work that is flexible because I am now unable to assist with lifting for instance, but I can do the other tasks involved with the role. I would also want to continue in my swimming squad because it keeps me active.

My tunnel vision is getting worse each year. I contacted (an agency that provides equipment for people with vision impairment) for a cane but at the moment I’m not blind enough to get a cane – once I take my glasses off to swim, a cane would help me to get to my swim lane independently and I wouldn’t have to rely on anyone. I’m seeing a psychologist and I’m also on anti-depressants I started having seizures last year and so I have been asked not to drive, the doctor thinks the seizures might be stress related – so I catch the bus to work at the moment. I have been given a shower chair as well.

When I go out with my friend who has spina bifida and is in a wheelchair, they always seem to talk to me rather than her, like she’s invisible; other times people stare at us. I find sometimes at a restaurant, we get seated out of sight – once at a table right in a corner facing the wall. My goals? Well, with Rent Assistance I have now found somewhere to live - I would like to be in a relationship, have a husband – someone who is independent like me and is interested in my swimming. I want to be treated nicely and with respect – which hasn’t been the case in the past!

It is important to have people with disability informing how the NDIS works because they know what it’s like for us.

What I want the NDIS to do for me:

I would like to have more meaningful work, particularly as a disability support worker with modified tasks that don’t include lifting.

I would like to continue training and competing in swimming.

I would like to continue living independently, as well as find someone to be in a respectful relationship.

15 Having their Say Project ADACAS 2013

Allison’s Story.

My name is Allison. When my daughter was 3 years old she was assessed as having the development of an 18month old child. Now, two years later, she is caught up and ready to go to the local school with only minimal supports. This has been achieved, in huge part, by the early childhood centre who worked so hard to get her to this point. We’re all set to go! She is enrolled, and the school is ready to accept and accommodate her. But… I can’t get her there. I don’t drive, and I have now acquired a disability myself that has made it unsafe for me to catch a bus or even walk with her, and transport services will only transport a child with additional needs to a special needs school, not the local school. All that early intervention now could all be wasted because I can’t physically get her to school. Clearly there’s more to this story, so let me explain.

For the last two years, despite the acknowledgement of my daughter’s developmental delay, her inclusion in the early intervention program, and being ‘on the list’ of the service provider, I was unable to access any other support or assistance, such as transport or respite, because there was no specific diagnosis. As a single parent who doesn’t drive and with no family supports, I managed the buses to take my daughter to the early intervention centre, mainstream preschool, and child care and to her specialist appointments all over town, as well as maintaining my part-time job. Work is very important to me: I strongly believe in the importance of providing a positive role model for my daughter. I got no help.

It was a very stressful time. Unbelievably so. And one day in June last year I exploded! I call it an explosion because that was the effect. It was thought I was having a stroke; it certainly seemed like it, and that day had been particularly stressful. But they found a mass on my brain which turned out to be the result of MS. I had no idea that was even a possibility. I spent 11 weeks in hospital and during that time my mother, who has a severe anxiety disorder herself, looked after my daughter. I had to learn again to talk, walk, the lot, and I’m still very unstable which is why it is not safe for me to walk and take buses. I need a mobility scooter and my Occupational Therapist is helping me to get financial support for it. When I get a scooter, I’ll be able to take my daughter school myself, or at least to the bus, and I’ll be able to return to my job which is still being kept for me. At the moment though, I’m pretty

16 Having their Say Project ADACAS 2013

much confined to this house, and desperate not to lose the advances my daughter made in the last two years.

There are further complications: there’s no place in this house for a mobility scooter. I am a tenant of public housing and I am on the priority list for a transfer to a suitable property. Housing have been very accommodating of my particular needs regarding location close to my mother, within the range of her limited driving and my scooter; and the modifications and future needs for my deteriorating MS. Once I move, I’ll be able to get a scooter; my daughter will go to the school in that new area, I’ll be able to get her there, and I’ll get back to my job. But if there’s no assistance with transport, she won’t go to school until we move, and there is no telling when that will be. Until then, we’re housebound here, together.

Early intervention has been successful for my daughter’s development but the stress resulting from lack of carer supports in that time, I believe directly contributed to the timing and severity, and the dramatic nature of the onset of MS. This should not have happened like this – not when I did ask for help. I feel that the help I am now getting (a cleaner once a fortnight and assistance with shopping) is given out of pity, not entitlement.

We shouldn’t have to be fighting, begging for services. When I was in rehab, the social worker put pressure on my mother to take my daughter permanently. Aside from the inappropriateness of that for my mother with her own disability, it was as though they knew that there is not enough support available. The NDIS gives hope of being able to buy services and supports, not beg for them. But the services have to be there. It concerns me that existing service providers are merging. It seems they’re trying to create a one-stop-shop which will potentially dominate the ‘market’ and eliminate choice. It’s important that there is an understating of how many gaps there are in the system. The ‘market’ has to accommodate people’s actual needs (for example, transport that isn’t necessarily associated with respite).

I’m concerned about our eligibility under the NDIS. MS is both degenerative and relapsing. There are, and will continue to be times that are difficult, and times when it’s better. And my daughter’s additional needs compound my own. She needs a better life, she needs a role model, and even just for that, I want to work and there’ll be times when I need more

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support. I’d go crazy sitting around all day. I want to be able to care for my daughter, to be the best parent I can be: and I’m going to need some assistance to enable that. So you see, it’s not just a housing issue, as some services say me when they tell me they can’t provide me with support, these are long term needs: it’s lifelong.

What I want the NDIS to do for me:

I’m ready to go… I could manage my own services… I know what I want…

I want to be able to buy my supports and services, not beg for them.

I want to have real choice in the supports I can buy and who can provide them.

I want support that will enable me to be the best parent I can be.

I want to have consistent support workers in our lives.

I want to return to work.

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Pedro’s Story.

I’m 52 years old. I’ve been in a wheelchair since I was 11 and I wear hearing aids. Dad died in 1980 and when my mum died in 1994, I moved into public housing. I have worked for 27 years – I’ve been at my current job for 13 years; I used to work fulltime but recently, because of health issues, I now work from Monday to Wednesday. I help manage a fleet of 16 cars; keep a record of kms, tyres, wheels, running costs, all of that. I also help in the office with name tags and labels. I designed an office plan/ layout for work. I’m so proud of myself for doing things – I feel happy when people say, ‘Wow, you did that?!’ I won a home design award – I taught myself, using Windows Paintbrush and my imagination. My goal is for others to look at my designs and enjoy them. I also designed the ramp that was built outside my house.

Taxis used to cost $590/month and were always running late… by the time I got to work, it was time to go home. 2 years ago, my advocate put me in touch with community transport services – this costs me $2.50 each way, to get to and from work, and they run on time. I also have a motorised scooter, the Vita – I got her in May last year and I’ve already done 7000 kms. I used my old scooter for 15 years and I did 150,000 kms – to get to work, to Civic, in the rain and in the wind. When I do my grocery shopping, I travel 45 minutes on my scooter. This supermarket has plenty of room, staff are happy, they all know me - I leave at the crack of dawn, go have a look at what they’ve got, come back home, order online and it gets delivered the next day.

I like to travel. I’ve been to Melbourne 8 times because I like watching AFL live – 3 times to the MCG, very noisy. I met a guy through work many years ago – he offered to fix my computer for free and now every year we head to Melbourne when he goes for work. I jump on the internet and book a motel; I can get to the game and around on trains and trams - It’s free and I can do it by myself. This year I’m taking my scooter. Mum and I did a lot of travelling. I’d like to keep going to Melbourne, travel to Adelaide, down to the coast - I haven’t been there since mum died, it’s too expensive. I’d like to travel with someone else – help them and show them the way.

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My goals are to look after my own house, do my grocery shopping, clothes shopping, go to the football, go to the movies and have my transport. At the moment I can’t manage my own goals if there’s no one next to me.

I’ve had a cleaner once a week through the same service for over 10 years but recently they’ve stopped. My worker didn’t like cooking what I want or doing things the way I wanted – she wanted to do it her way, not my way. Now everything’s changed in my life – they’ve mucked up my goals! I can’t call them, they don’t tell me anything, and they think I’m a dummy. They called my sister without my permission. I got a very bad shock. My family hasn’t talked to me since – even my Christmas card got returned. They absolutely ruined everything. There’s a gap now – I want to be happy, not miserable and hurt. I want everything fixed back to normal before they walked away from me. I’m not the only one this is happening to – my advocate is out there helping me with this big issue. We’re trying to fix it.

In my younger days I would just pick up a goal and carry on. But now when you’re in trouble sometimes you need a little bit of help. I came home one day, jumped on the internet and got in touch with the advocacy service. It helps to have someone next to me.

What I want the NDIS to do for me:

I want people to see what I can do and not just what I can’t do.

I want my control over my life to be respected – this is very important to me.

I want support and assistance based on how and what I would like.

I want to give my permission before someone talks to my family about me.

I want to have someone to advocate for me whenever I need.

I want to keep working. I moved from lower levels to higher levels – I love my job, every minute of it.

I want to be able to travel, with someone else so we can help each other.

I want to be able to help others.

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Jenny’s Story.

I was diagnosed with schizophrenia 17 years ago. My father died 7 years ago and 6 other relatives died of cancer in the space of 6 years. That’s a lot of grief for my mother and I.

I’m on a lot of medication and I have no say in it. I kept telling them that Risperidone was affecting me badly but I was ignored. I used to work for the Therapeutic Goods Administration so I’m aware of what these drugs can do. It made me angry and violent, and they didn’t take me off it until I hit my mother and copped a criminal charge. I was very severely dealt with by the police, even after telling them I had schizophrenia. I was locked in a hard cell, bashed and sexually molested. I had begged for years to be to be taken off Risperdal, but only after I was charged was I taken off it. Now I’m under treatment and restriction orders because I’m considered to be violent. That has caused me a lot of hurt.

My mother is my carer and we want to live together but I’m under orders and can only stay here a few nights a week. My mother has a flat under her house for me to live in but I have to stay in my public housing flat in a large complex where there are drugs and violence, and I feel very unsafe. I’ve been bashed there, too. I want to move back home and my mother wants me to. I need the safety and stability. I want to choose where I live, not be controlled by people who think they know best. You’re told you must do as they say, even though it can be the wrong advice. I’m not heard. I’m not listened to. Ultimately I should make the decision. No matter how sick a person is they are still entitled to their views and opinions. I want to be a part of the treatment team, not the object of it. And I want to choose my psychiatrist.

My primary goal is to have choice and control of where I live. Once I’m safe and stable I want to get a job, maybe with the Salvos doing charity work, helping people, or maybe as a medical receptionist or as a Personal Assistant. Maybe I could do business studies to help me get that kind of work. And I’d save for a car. I’d like my boyfriend to move in with me, and I’d like to get married.

It’s very important to have someone independent to help guide me through all this. I’ve had an advocate who works with me and listens to what I want, and I know I need to have someone like that with me. The Public Trustee controls my money at the moment but I wouldn’t like them to control NDIS money if I had it. They look at things differently; they have a different purpose. So it’s important to have someone independent beside me to help say what I want so that I am listened to.

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What I want the NDIS to do for me:

I want someone independent to help me get control and choice of where I live.

I want assistance to find and maintain a suitable job, and if that means help to study, then that too.

I want independent support so that I can become a part of my medical treatment team.

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Janice’s story.

I’m 47 year old. I have cerebral palsy and need 24 hours care. I have been living in supported accommodation for the past 6 years with 5 other people – there are 3 units with 2 people in each one. At present, I am unable to leave my bed for the past 2 months because being in a wheelchair is really uncomfortable due to health issues. I was born in Canada and have travelled around Australia a lot because my dad was in the navy. My family members live in New South Wales; my parents call me twice a week. I have a cat called Princess who is almost 2; she curls up on the edge of my bed during the day.

I like putting on makeup and getting my nails painted, just like everyone else – but I need help doing this. I do not sleep very well, so I watch TV in my room. What frustrates me at the moment is that care is so structured: meal times, showers, etc.; and some workers’ attitudes need to change - there needs to be more training. I need 2 people to lift me and this makes me frustrated because I can’t do anything myself. I’m a normal person and I want to have my privacy – sometimes when I’m by myself, I would like the door to be shut but I’m not allowed. I feel like I don’t have the right to be responsible for my privacy and having some space.

I hope I am up and about in 2 weeks’ time. I usually get a taxi and take my electric chair and go to the shopping mall. When mum and dad visited me at Christmas time, we went out and it was really uncomfortable. I would like to move in with my boyfriend but my parents don’t want me to – they are my guardians and I have to do what they decide. If I was able to, my boyfriend would look after me and I would only need help during the day while he is at work. It should be up to me, it’s my life.

Two or three years ago I had some work for a few hours a month; I would write about disabled people like myself and what I could do. I would like to find another job using computers. I would like to write a book – to tell people about what I’d like to do, about my life, my family, my travels, my journey - I would need help to do this. I have an iPad which I bought 2 months ago and I love playing word games! Though I know words, I can’t communicate these words well because of cerebral palsy, so I need help to say what I want to say. So, one of my goals would be story writing, with assistance every day. I would also like to do a course online about caring for cats.

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I have not heard anything about the NDIS – I would like more information in a way that I can access it.

What I want the NDIS to do for me:

I would like my care providers/ support workers to receive more training.

I would like my care and support to consider my routine, not simply follow their timeline.

I would like to have my privacy respected.

I would like to be able to do some things for myself.

I would like a part time job using computers.

I would like to get support in order for me to keep a journal and write a book.

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Sarah’s Story.

I’m 23 years old; I’ve only ever seen one page of info about the NDIS that came in the junk mail and that’s all I know about it; My story is not nice – I’ll give you the overview: in Queensland 8 or 9 years ago I started going in and out of hospital, self-harm, suicide attempts – next thing you know I’m being diagnosed with Asperger’s, depression, psychosis, borderline personality ; I was diagnosed with 13 different disorders– no doctor can tell me what I have which is driving me nuts- I have 5 main ones plus an extra 6–but I was eligible for disability support; after 5 years waiting I still had no supports – there was nothing available – but every year they sent more paper work to update information even though nothing had changed.

3-4 years ago we (Mother, her boyfriend & I) moved to ACT; I had to have all new assessments; every time I see someone new I have to tell my whole messy story all over – information doesn’t get passed from one place to another; I was told I was not sick enough to see a psychiatrist or anything; but then after 2 police-escorted hospital visits I was eligible; after that I was supported by a mental health program and an employment support agency; I haven’t had my meds reviewed in the ACT in 3 years; I went to a doctor for that and spent half an hour retelling my whole story, because she hadn’t read my file, and I still didn’t get my meds reviewed.

My mother and her boyfriend moved to Darwin a few months ago; I didn’t want to go and was homeless for 4 weeks until with advocate assistance, was allocated public housing; new part of the city means I have to go to a new mental health support program; it depends if they have a place available - I haven’t been able to get there yet. The employment support agency sent me to jobs I was not suited for; when I was being bullied by the boss at one place, my agent told me to “suck it up”; the last job they sent me to I was doing domestic assistance; I had to drive all over the place and never knew what I was going to be doing until the morning – there was no routine – I had to fit theirs; I quit and the agency suspended me; I haven’t heard from them since. I had a job I really loved, at the kennels but the boss was a *** and I had to quit but I absolutely loved that job; at the moment I don’t have any support – not mental health program or help for work.

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My goals? All I ever wanted to study was palaeontology but I didn’t finish high school – I got kicked out because of bullying – punish the victim; I’m too busy now doing volunteer work – bible teacher (door-to-door); I do 40hrs/month but I want to get to 50hrs/month – just my own goal; a friend does 70hrs month – I know I couldn’t manage that, I can only manage 2 days a week – but I’d like to get to 50hrs/month. I want a job; I want to move to Queensland, to Townsville where my sister lives; I want to be close to my niece and baby nephew; it’ll be expensive so I need a job; I need help to get a job; I also need a place to live when I get there but people don’t talk to each other – Housing here should be able to talk to Housing up there.

I want to get qualifications; I started doing Certificate 3 in Companion Animal Services. I lasted 3 weeks and I had to drop out; all the material was on-line and I don’t have internet– it’s $15 on food, petrol or internet - and I need books; all they could do was put me in a smaller class but the material was still all on line; the disability support officer didn’t show up for my appointment. I’m not going to bother with TAFE again. I’ve done correspondence courses before – I can do that – there’s a course from up in QLD but you have to have a job with animals first and it costs $4000 up front; I don’t have the money;

I know what I want – I have my goals and plans – I don’t have the resources

What I want the NDIS to do for me:

I want to tell my story once; I want to be able to live where I want to. I want support to get work that I like and to stay in that work; I want support to do more study.

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Leigh-Ann’s story. I’m a 49 year old woman, who has been given a diagnosis of schizophrenia. I have type 2 diabetes and 10 years ago, a stroke affected the left side of my body. These past 2 months I have been living in a residential mental health program with 4 other people but I have to leave in a month because 3 months is the maximum period you can stay. I was at the hospital’s psychiatric unit for 12 months prior to that – I didn’t like the way I was treated there. I still pay rent on my flat but I’m not allowed to go back there unless I’m with a staff member. All I have here is my laptop, guitar and 4 changes of clothes; I also wish I had a bit more privacy. I have a meeting with my guardian, advocate and someone from housing tomorrow to sort out where I can live…

I’d like a downstairs flat with a garden, then I could get a kitten. I love cats! I don’t want to be around people taking drugs and causing trouble, just somewhere where I feel safe. I’m not incapable with cooking and cleaning – I don’t want help with that; what I would like is help with shopping and transport – for someone nice to take me out occasionally for a drive or to the bush. It gets lonely; I’ve got a kind and generous nature and I wish I had people I could hang around with and have conversations with, not just workers and co-residents.

When I was 7 my mum died and my dad couldn’t take care of me and my brother – so I was put in foster care – this couple looked after me, they were very strict but they were loving as well. I used to run away back to dad and eventually I left my foster home and school at 15 and then mental health got involved. I’m going to be seeing a new psychiatrist because the one I’ve had for the past year has moved – that’s good because he was a bully - I missed an appointment, the police came, handcuffed me and took me to hospital. I had a good relationship with my previous 2 psychiatrists – I wish I could have a choice of doctor. What I would like with mental health services is not to be threatened, to be treated with kindness and love, not to be pushed around, and to be respected. I enjoy painting and going on long walks - my only vice is smoking cigarettes!

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I’ve never heard about the NDIS. What I would really like is a part time job. When I was with my foster parents I used to work at Kmart and also at the local chemist in the evenings. With my new (second-hand) laptop I’d like to enroll in a Business Course part time for 6 months at CIT. I studied hard at school and I like to keep myself busy – a job behind a desk using a computer would be great, or I’d like to work in the evenings stacking shelves at somewhere like Big W; working in a café does not suit me. I feel like I’m living below the poverty line – after my rent and groceries, I am left with $60 a week. If anyone would give me a part time job, it would mean a lot to me – to earn and meet people. First though I need somewhere suitable to live. I would need a bit of money to get started for clothing. I would also need transport organised to and from work.

Sometimes I get stuck and need someone to speak on my behalf, someone to be there with me, that I have a relationship with, someone that knows me – to say to potential employers, yes she has a mental health issue but it is under control, and vouch for me. With the NDIS, I would need help with planning and deciding on what my options are.

What I want the NDIS to do for me:

I would like to be treated with respect, just like everybody else does. I would like to find somewhere suitable to live that is safe, and where I can have a cat. I would like to undertake some training with support. I would like to have someone to help me find suitable part time work, and also support me to keep working. I would like assistance with transport for my grocery shopping, and to and from work. I want to be able to choose my own doctor.

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Stephen’s Story.

I’m 29 years old and live in a disability house with five other people. I’ve lived there for 2 years but I’m trying to move to a new place in the part of town where I went to school. I like it there. My advocate is helping me with that. He helped me move out of my parents’ house to this one, and now he’s helping me move to my next place. I couldn’t do that by myself. I need someone to help me.

Sometimes when I want help the carers are too busy helping the other people. I ask them to help me or take me somewhere and they’re always too busy. They say we can’t use the bus for the things I want to do so I always have to do things on my own, and I get sick of always being on my own. I’d like them to take us to the Cotter River or to Tharwa for a picnic, but they’re too busy. They used to take us to the shops to look around, to have coffee … but that stopped a year ago. I want them to do things with us. The old boss used to find things for us to do, or he’d just do things with us like sit together out the front and have food, or joke around or play music. Now it’s a lot more …. Well it’s not like it used to be.

My disability is anxiety, depression, obsessive compulsive disorder, and tuberous sclerosis. Sometimes it’s hard for me to be out in public. I get frustrated and angry because I think people are looking at me in a funny way. But I’ve been much better lately. Two years ago I got new medication and it makes me feel much better. There are tumours at the back of my brain and in my throat from the tuberous sclerosis. I smoke cigarettes. I have since I was 18 – that’s a long time – but I’m going to give up at the end of February. I’ve promised people and I don’t want to let them down.

I used to go out clubbing and stay out late, but I don’t anymore, I don’t see the point, and my parents don’t like it. It caused a lot of trouble last year. I don’t have to do what they say, but they are my guardians and if I want them to do what I want, then I need to do what they want, too. I have to respect them as my guardians. I go fishing with my dad and we visit lots of places – Lake Eucumbene, the coast, Port Macquarie. We went overseas to visit my mum’s relatives, just Mum, Dad & me for 6 weeks last year, and I’ve been on holiday to New Zealand. I’d like to visit places I haven’t been yet – explore country towns in Australia like Wagga. I’d like someone to help organise that, and go on holiday with me.

During the day, an ordinary day, I listen to music on my iPod, I watch TV, I go out … I try to keep myself busy with other people. There’s a lady who helps me organise activities and she’s arranging for me to play basketball and to learn to cook – I’d love to try and learn to cook.

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I’d like to learn how to read and write. I can write my name and, if I haven’t got any problems, I can write my address, or if I have it on a piece of paper I can copy it. I was in a disability class in a regular high school and (secondary) college and it was ok, but I didn’t learn to read and write. I had tutors and I went to TAFE but I still didn’t learn. If it was possible, I would still love to learn.

And I’d love to have a job. Not gardening or lawn mowing – I’ve done that before and I don’t like it. I’d like to do office work – shredding paper, delivering letter - helping people.

What I want the NDIS to do for me:

I want to be part of the team that decides things in my life. I want to be listened to and respected, just like how I’m learning to be with my guardians.

I want to know there is someone I can contact when I need help to sort things out.

I want help to find paid work that I enjoy and that is helpful for other people.

I want to learn to read and write

I want someone to help arrange holidays where we can explore places together.

I want carers to be flexible and support me to do fun, relaxing things, not just the basics.

I want help to go out and about, to be included in the community like other people do.

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Stephanie’s Story.

I’m 44 years old. I suffer with Sciatica and Achilles tendonitis in both legs, though the right side is worse; I was diagnosed with arthritis about 15 years ago and I also have problems with dermatitis. I’m on high doses of medication – a new drug I’m on isn’t working and I’ve been told that I need an operation. I messed with alcohol and drugs when I was 21 - I was suffering from endometriosis and then at 27 had to have a hysterectomy.

I have to wear special shoes – they cost the government a lot – they help me not to lose my balance and that’s what I’m meant to wear day in and day out – the same pair of shoes. I know other people who have to fund their own footwear, that isn’t fair, the paperwork is tedious and shoe fittings are done in Sydney by appointment. I funded a second pair of shoes, but they were made incorrectly so now I can’t wear them – it was such a waste of money. I’m uneasy in my own home because of the number of falls I’ve had.

It’s hard to understand what it’s like for people with disability unless you’ve got a disability yourself; it’s been 10 years since I’ve showered without footwear. I wish that people in positions (of power) would look past our appearance and see us for who we really are, what we really want and what we can do – people say I’m angry but I’m in pain. I was very young when I started using a walker, sometimes I can only shuffle along or drag my right foot along and people stare at me; it’s the looks that get to me.

In my case I’ve found because of my age, I’m either too young to be eligible or too old for current services. I’ve been living in this house for 10 years and it’s been a battle. Because of the cost of my medication and other bills, my weekly cleaning is provided free of charge because even though I need it (I can’t bend to pick things up), I can’t afford it – I’m very

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thankful for this. Community transport is also helpful, but for some people it comes down to having the $3 on the day.

There’s a saying, ‘don’t let your attitude be your disability!’ I opened up a food coop with a tenant participation grant. I wanted to give back to the community because I have been helped so much. At the moment, it is not in operation. I do volunteer once a week at another food coop; the yellow van days are the best because people know you can actually get some fresh fruit and vegetables that’s affordable - without this I wouldn’t be able to eat healthy. The day I volunteer, there’s also a community meal served. I feel better when I help someone – I feel like I’m out there giving back to the community, even if it’s just 3 hours a week.

For the past 7 years, I’ve been seeing a counsellor through a community based support organization – she has been a really important part of my support and an inspiration too. But now they’re winding up and I can’t see her anymore. I refuse to tell my story again to another person – you can’t deal with today’s problems when you have to discuss yesterday’s problems over and over again!

Similarly with advocacy, I was dealing with different services, and now I’ve been working with someone who I get along with and really connect with – she’s helped me more in a year than I’d been able to work out with housing by myself in 13 years. Because of my dermatitis, I was able to get a spa bath installed, but now I need equipment to help to get in. A housing assessor came to see me; he agreed to have it fixed but only if I signed a statutory declaration that I would not request any more work to the house. At the moment if I speak up, I’m considered non-compliant! Who are they to judge and decide! I should also be entitled to an explanation regarding decisions they make. I feel that I’m answerable to the government because of strict guidelines; I hope the NDIS is answerable to clients in some way. I’m not managing, I’m in constant agony most of the time; there are lots of things that I need and that’s when I have anxiety and panic attacks – so I need someone to act on my behalf.

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I heard about the NDIS on 2 occasions: once when I attended a carers’ information session; the other time was hearing about it from one of the volunteers of the Food Coop who seems to know a lot about it. I’d like to know more about it – but not through the Internet - I want to be able to hear it and discuss it with others. The lack of information about current services and options that are available is bad enough - under the NDIS this should be clear.

What I want the NDIS to do for me:

I would like the choice to decide who provides services to me, someone who I develop a relationship with, someone who I believe in and I get along with. I would like easy, personal access to information about services and options that are available to me. I would like to see more community education to increase awareness for people of all ages. I would like to continue to access advocacy services to help me voice my concerns and act on my behalf. I would like to continue volunteering and helping others.

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Rocky’s Story.

I’m 28 years old and my mum says I’m a miracle! Just after my 21st birthday the twitching started. For seven years I couldn’t stop twitching, moving, kicking, swinging my arms; and when I would stand up I would arch back like a banana. If I lay on the floor, my hair rubbed off the back of my head in 15 minutes because of all the movements. I had to go to respite care, and about three years ago I moved into a group house that had carers. Then Mum said to me, “Do you want brain surgery?” and she explained everything to me about them putting electrodes in my brain and a pace-maker in my chest to stop all the movements, and I said’ “I’d love it!” because it would be better than the way I was treated … it was really, really bad. So now I don’t twitch or arch back any more, I can sit in an arm chair again, or a chair at the table and feed myself with a knife and fork, I can cook. I moved back home because I didn’t need all that care and I looked after Mum after she had her knee operated on. I’ve started back at my old job, too. That’s why my mum says I’m a miracle!

Dr John saved my life. He said, “Take her off Risperdal!” It was a child psychiatrist who put me on it – I went to see him because I was in trouble all the time and getting suspended and stuff. He prescribed Risperdal and that caused all the movements. I hated it! I went from 98kg to 49 kg , I was like a pencil - that’s how much I moved! I used to say, “Mum, can I come home?” and she say, “No Rocky, I don’t have the necessities”. But she used to bring me home 3 days a week when she didn’t have to go to work. Mum and I had quite a few trips to hospital, too.

One morning a carer force-fed me weet-bix. I told her I don’t like weet-bix but she said “Eat!” That night I couldn’t breathe. I was in trouble with the staff and they locked themselves up in the office. I felt really sick and started coughing. They rang Mum and we went to hospital. I stayed for a week; I had pneumonia. They messed up my medications in hospital as well and I felt really sick because of that. When I came out I had to go back to respite. The carer said to me, “Are you going to be good?” and I said yes, but I hit a boy by accident; I couldn’t help it with all my movements and flailing about, but the carer said I was violent and there was trouble. I didn’t mean to; it sucked.

34 Having their Say Project ADACAS 2013

There was lots of bad stuff like when they wouldn’t listen to me about when to give me my meds, or when I told them they had already given them to me. They’d say, “No” and then Mum would find two lots missing from the Webster pack, and they’d say, “Oh, we’ll give the carer more training”. And they’d try to tell me that I couldn’t tell people things that happened, and they’d be horrible to me if I did. I didn’t feel safe. They treated me like I was a child and stupid. Not all of them. There were three who I really liked and who listened to me and helped me.

Before I had the surgery I got an ISP (Individual Support Package). Mum had to fight for it, and to fight to manage it herself. We still have it because we’re not certain how everything is going to go and Mum wants to make sure that I can be independent like before the twitching started, so she makes sure that I have good people to help me and she trains them. I have a friend who I go out to have coffee with, or we go shopping, or make things, and other stuff that’s good to do. We do normal stuff, she doesn’t treat me like a child and she lets me do things for myself.

What I want from the NDIS:

I want Mum not to have to fight to get and manage my ISP.

I want to choose who helps me so that I feel safe and listened to.

I want to live independently in my own place.

I want assistance do more tasks at work and to work full time.

I want to travel, and to visit my friend in Sweden.

I want the opportunity to show people what I can do.

35 Having their Say Project ADACAS 2013

Leanne’s Story.

I’m 46 year old. I have cerebral palsy and need 24 hours care – so for the past 3 years I’ve been living in a residential aged care facility. I was in a hospital for 9 months before this – I didn’t want to be there for the rest of my life so I agreed to come here. This hasn’t been the easiest road – I’m the youngest resident and I don’t fit the mould of being in a nursing home.

I’ve only heard about the NDIS briefly on TV. What I would like in the future is to live with more freedom; where my privacy is respected; I don’t want to tell them my every move, be monitored. My goal is to live in the community in a way where my needs are met and where I have more freedom. This would mean appropriate accommodation with 24 hour care – either having a house where I live with someone, or in a group home, provided I have more freedom and privacy than I have now.

Another consideration is the staff I would employ – I need to have 2 carers assisting me at times. At the moment there is one individual from one organisation and another individual from a different organisation that I would employ if I had the choice – I want to be able to choose who provides my care. In my current situation I don’t have a say, even if we don’t get along. My needs have to fit in with care, rather than care fitting in with my needs.

I want to be able to see how much funding I would be entitled to so that I can plan. My case is complex - I wouldn’t want to plan and then find out it doesn’t work. I need to make sure that the funding amount is assured and that it will be ongoing.

When I’m out and about in my wheelchair, it’s as if people don’t see me –they speak to the person with me instead. I’m glad I can have my say with the NDIS – this is the first time that I’ve been given an opportunity to voice my opinion about matters that have an impact on my life. I hope there are people with a range of disability on various NDIS panels and boards because our opinions are important.

For me it’s new to have choices – to be given options. I want to be assisted by an advocate who is outside of the system because my case is complex.

36 Having their Say Project ADACAS 2013

I have questions about many things regarding the NDIS – if I live in community, will my equipment costs be covered under the NDIS? For instance the air mattress, bed, overhead lifting support and hoist that I will need, as well as my catheter bags - will I have to pay? I like the idea of choice, but I want it to be real choice – not limited by what others have already determined.

With the NDIS, I don’t want my expectations to be raised and then not be realised. I am a young woman with a significant disability who wants to be able to have a social life and pursue my interests – however because of the residential aged care charges, I had to apply for Financial Hardship Assistance so that I can afford a weekly cup of coffee and a sandwich.

What I want the NDIS to do for me:

I would like to know upfront how much money I am entitled to so that I can plan appropriately.

I would like to be in control of my own funding.

I would like to decide who will provide care for me and what services I use.

I would like an assurance that there is continuity so that my needs are met in the long term.

I would like freedom, privacy and space in my future living arrangements.

I want to have genuine choice – not limited by what others determine is right or best.

37 Having their Say Project ADACAS 2013

Kreesen’s Story.

My name is Kreesen. I came to Australia from New York in 1994 and was a high school teacher until I had a stroke on 31 October, 2004 – Halloween – some trick! At the time of my stroke I was out in public and people who saw me thought I was drunk so I sat down on a bench and tried to look busy by opening and searching in my knapsack. But I realized I had to get home so started walking back to my apartment. Once there, I had to struggle to get my key out of my left pocket with my right hand because my left arm wasn’t working at all, and ended up on my knees, leaning against the door before I managed it. I fell on my bed and knew that if I didn’t call the hospital I would die but when I managed to get my mobile

phone out, the battery was  flat.  I remember thinking, “What a pain in the ass!” So,

struggling and nearly falling off the bed and getting really pissed off, I managed to get the charger plugged in and dialled 999 before I remembered 000. A voice said “Hello, how can I help you?” but I couldn’t talk and they cut me off. I dialled again two more times before they traced my number and the ambulance came. Then I passed out and woke up in the hospital where I stayed for two years before I moved in here (supported accommodation) 6 years ago. I’m restricted to this (motorised) wheelchair and am using a microphone and speaker to catch my very soft and breathy voice, with half-formed words that I struggle to form, and you struggle to interpret.

In my view, rehabilitation has been limited. In the hospital and in the community they make the judgment and decide when there’s nothing more they can justify doing, and you are rejected from their service. But I have paid privately for physio and other treatment and I’m starting to take steps again. I want to get out of this chair. If I have the control the NDIS suggests, I will employ carers who are well trained and perceptive and can work with me on my rehab, especially first thing in the morning. That’s when I need to be going to rehab. If I had that I would improve. I have the incentive, yes I do!

I know almost nothing about the NDIS, only what you (ADACAS) have told me and given me to read. The Principles make me think of the Magna Carta! It’s good that some people care, and I think it will be better for me.

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In general, carers need to have more training to work with, and take care of people with disabilities. What’s needed is very simple, very basic, but it’s very hard for me to explain, to tell them even simple things. For example, someone who’s been here for six months should know how to do things, like getting me to bed: It’s very easy – takes no more than five or ten minutes to pull me up and over on my side, ensure my bedside table is within reach, and that I have the call bell. I’m a teacher, and I have been trained to watch people very closely. When someone tells you a thousand times that they don’t get it, then they shouldn’t be trying to do it by themselves - it’s not fair to them or me. And you can’t put a new person with someone like that – that’s just poor management.

On the other hand there are staff who are very intuitive and perceptive. They will ask, “How can I help you get comfortable?” I tell them, “Look at my body in the chair” and they look and know what to do. They move me just this much and then it’s better. They’re the sort of people I would choose to have around me. I know I can deal with people and situations. I’m very patient. When I was a teacher, the kids would tell me things before they told their parents. It’s not just that they trusted me but that I knew how to handle it. I’d tell them, “If you don’t tell me, I can’t help you.” Now I need help, and I need to trust that the people I’m telling, the NDIS, are actually listening to me and know how to handle it.

What I want the NDIS to do for me:

I want to live in my own home and employ the staff that I want to have around me;

I want to receive the rehabilitation I need to be able to walk again and get out of this wheelchair;

I want my friend, who currently dedicates a huge amount of time attending to my needs, to have a ‘good life’, too.

39 Having their Say Project ADACAS 2013

Senate Standing Committee on Community Affairs

Carer Advocacy Service

© Copyright ACT disability, Aged and Carer Advocacy Service

Suite 104, Block C, Canberra Technology Park, Phillip Ave, Watson PO Box 144 Dickon, ACT 2602

Contents

Project: Allison)

2 Victorian Law Reform Commission. (2012) Guardianship: Final Report. Melbourne. Victoria Law Reform

Their Say Project: Stephanie)

Project: Allison)