Submission on the National Disability Insurance Scheme
Bill 2012 - on behalf of the
Every Australian Counts Campaign
Every Australian Counts
campaign for the
National Disability Insurance Scheme
theACT
Every
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Understanding the
Every Australian Counts campaign
submission to the Senate Inquiry
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A snapshot of comments by
Every Australian Counts
campaigners to the
NDIS Bill 2012 Senate Inquiry
ACT “The system doesn’t work for our family because services are so fragmented, tied up in what they need to achieve not what we (families) require, have untrained staff who don’t know or understand our needs and mostly only offer band-aid solutions. Having a dual disability with a mental health condition just makes it worse with mental health services refusing to provide services because they say it is better placed with disability services but disability services have no training or funding to assist with the mental health aspect of someone with a disability. So that leaves families NO
WHERE and WITH NO ASSISTANCE.”
“Every human being has a basic right to maximise their abilities and thereby contribute to society to their full capacity. It is the responsibility of the whole of society to ensure that this happens, as we will all benefit. It [NDIS] makes good economic sense, in addition to the obvious social bene fits.” VIC “Because good services are almost impossible to get, and then you feel almost privileged to be funded for something even if it is not exactly what you need or would choose. You are never free to have services that are completely tailored to what you actually need. There are year long wait ing lists for services and accommodation. The sector is crisis driven and services are ad hoc. DHS offer caravan parks as suitable housing for intellectually disabled people. Disabled people’s legal rights are not upheld and abuse of all sorts is rife.”
“As the sister of a young person with a profound disability, I have grown up watching my family sort through broken and non-existent disability services looking for supports for my brother. As my brother gets older, it becomes more obvious that the supports and services he will need into the future currently do not exist. We cannot access services in a timely manner. We are on a waiting list that seems to have no end and as a result cannot obtain any funding to utilise services that do exist. My brother deserves to participate in his local community and this is not possible without funding and support”.
NT “The support types and features of the Scheme will need to be flexible to cater for diverse needs but not encourage rorting or inefficiency, a big challenge! Person centred approach that encour ages individual and family growth, capacity and responsibility is needed along with a national ap proach to life that emphasizes social accountability and addresses the social determinates of health”.
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NSW “As a physiotherapist I come in contact with a lot of disabled persons. I have worked in the UK in a spinal unit & was impressed with the service they have in that country. I am amazed at the lack of facilities in this “lucky” wealthy country where they are treated like second rate citizens”.
“We have a young daughter who has severe cerebral palsy. The system to support her is disjointed and has crazy age limitations (CP is not going to be “cured” by age 7). There is not enough thera py support, slow equipment support (and prohibitively expensive), and long waitlists for essential services. Respite is hard to get and haphazard if it does come. Funding that may be in place at school age has to be applied for repeatedly, and then stops at 18. Then the whole process needs to be started again. This means over administration, red tape and high costs. The new system needs to be streamlined, and funding given to the parents or carers who are trusted, well informed and will do everything in the their power to make their loved ones supported, comforta ble and able to achieve their personal goals. Other countries get it right, how come Australia is SO SLOW on the uptake?”.
QLD “Inadequate resources to support their children preclude two of my friends who have severely dis abled children from going to work and both contributing their significant skills to our community and economy, as well as enabling themselves to earn an income that supports their independ ence”. “The disability system is disempowering in that it takes so long for any resolution to occur because of the paperwork we go through and the time delays for any funding to come through. There are also few meaningful work opportunities or lifestyle programs for a person with a disability to be engaged in”. TAS “If the NDIS will not go ahead, there is no future for my child. She will not receive the education that she requires for an independent life, she will not participate in social activities, she will not gain meaningful employment and she is likely to live with us for a long time to come”.
“Most importantly – I am very tired of those who ‘know’ what we need! In all of my 25 years of caring for a profoundly disabled daughter, not once have I ever been asked ‘what is it you need to be able to care for your daughter at home and what do you see as your requirements into the future’. In short a serious lack of consultation with stake holders”.
Support needs met by the Support needs not met by disability system the disability system
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WA “My husband and I work full time, our son finished school in December 2012 and was given fund ing for 10 hours of Alternatives to Employment funding. On appeal we got a further 5 hours. I work 40 hours per week, what am I supposed to do with my disabled son for the 25 hours that he has no funding for? Am I supposed to stop working? We have a mortgage and bills to pay and have always worked hard to support our son and provide him and our daughter with good educa tion and opportunities. We have never been reliant on any system but now we need support! and 40 hours of it. My son can’t be at home by himself. I’m at my wits end with the disability system and the lack of support and opportunities for children after school”.
“We have been caring for our 32 year old son with cerebral palsy full time. We are now 60 years old and have had no life outside our home. My husband relies on pain killers for his back prob lems, so that he can continue to lift C, who is an average sized man. Cs cannot speak, walk or car ry out any self care. The disability system is failing because we have been applying for accommo dation support funding for five years without success, and no hope of receiving it because to be in ‘critical need’ and deemed eligible, we need to be divorced, one of us to have a terminal illness, or be aged 80 years or over. In the last 6 months I can feel myself cracking. C doesn’t have the quality of life he deserves because we are too exhausted to take him out, and I am often impatient with him (he is very alert) I lay awake at night worrying about his future when we die”.
SA “Working as a paediatric physiotherapist in regional South Australia, I am all too familiar with the extreme difficulty we have in accessing mobility and access equipment for our children with major needs. All too often despite the best forward planning many of our children have to start kinder garten in a pusher because the wheelchair which has been on request for 12 to 18 months is not available! How demoralizing and what a poor first image! The difficulty of transporting equipment from kindergarten to home or school to home, particularly when there are other children in the family can also be quite prohibitive. We all know the importance in early development of the abil ity to make choices and the consequence of our decisions, but how can these children learn this if they must rely on someone to move them if they have time”.
“This isn’t about luxury or extras this is about fundamental care and service - people should not be begging for what many of us consider human rights”.
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Key findings to questions
supportThe
People with disability can choose who comes into their home
Access to reliable information about support options
Removal of age barriers to services for children
More opportunities to participate in the community
Less red tape, with planning done locally by people who know their community
More rights for people with a disability
More employment of people with disability and less reliance on social welfare
Better access to education and work opportunities
People with disability/family will influence the types of support and services offered
Better access to mainstream support and services
Minimising the number of times people have to tell their story in order to get support
Increased ability to coordinate services to suit the “whole” person/family
People with a disability can plan their lives and pursue their goals and dreams
People with a disability can choose the types of support to use
Older parents and families will not worry what happens when they can no longer provide support
The ability to receive services when needed and in the way that suits the person
Ensure support and equipment is available when needed
0 100 200 300 400 500 600
Number of votes
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modificationsThe
Interpreters and other communication support Recreation and community access Positive behaviour support and psychological… Crisis and emergency support Education support…
Life-skills
Employment support Case management, planning and coordination In-home care and domestic assistance Flexible in-home/outside home respite Accommodation options Equipment and home/vehicle modifications Therapy and allied health services Support for families and carers
0 100 200 300 400 500 600
Number of votes
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summary
These submissions continue to highlight how the severe underfunding of disability services has a punitive financial effect on people with disabilities and their families as well as the nation as a whole.
Without adequate support, equipment and services, people with disability are not able to carry out the most basic of human tasks, like getting up and showering, getting meals and transport, which of course restricts their ability to maintain any kind of working or community life.
Furthermore it almost always requires family (where available) to fill the gap of service provision and the time consuming task of dealing with the disability system, so often by foregoing their own career and the monetary and social benefits this brings. Families are forced to the brink of poverty and despair resulting in broken relationships, and a cycle of poverty and mental health issues.
Where funding and services are provided, there is a constant theme of wasted resources and inflexibility that does not assist the person with disability towards independence and productivity.
The submissions received by Every Australian Counts continually cite the missed opportunities when timely support is denied including key milestones in gaining independence such as the ability to speak or to move independently or study or work.
They also reiterate the difficulties in having a say in the best kind of equipment or service provision. Again, these factors are key in ensuring that people with disability and those who support them are able to participate fully in all aspects of the Australian community and to contribute to it economically, culturally and socially.
The third major finding is the terrible uncertainty for people with disability and their ageing parent-carers or family over future accommodation and support. Parents and siblings report never-ending worry over the lack of options for their loved ones, with the only certainty being that they will be alone and immensely vulnerable.
It is with the support of the Every Australian Counts campaign that these factors
are bought to the attention of Senate Inquiry Committee when considering issues in relation to the National Disability Insurance Scheme Bill 2012.
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Appendix one The online submission form used by the Campaign
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Text from the Online submission form: —Question
Question—NDIS
-home -home/outside
Question—
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