To the government

Submission 2828

I am writing to you today as i disagree with some of the proposed legislation you are trying to pass.

Having a disability is not something i would wish upon anyone because every little task is so much harder. It’s exhausting but when you do achieve what you set out to do it makes it even more worthwhile. I was born with a congenital myopathy. There is no specific treatment available but aggressive supportive care is essential to preserve muscle activity to allow for maximal functional ability. It’s NEVER EVER going to disappear. I personally have learned how to walk twice in my life with support from orthotics and other assistive technology and support worker supports to help me. Walking and talking is something that most of you take for granted and don’t give a second thought to.

Things you don’t see and can’t measure: FUNCTIONALITY: It may be good one day and then not so good the next day. How much energy am I going to wake up with in the morning regardless if a full sleep is granted or not. That’s before i even get out of bed.

PAIN: A full sleep is rarely granted because of the pain and spasms associated with the disability. As well as the congenital myopathy I have also had a stroke. The everyday tasks take so much more energy. It too NEVER disappears. Like showering or even walking and being seated - always thinking about balance, stability and distance needed and falls. Just because you can’t see it doesn’t mean it doesn’t exist.

How do you measure a signinficant disability? How is it up to you decide who gets NDIS and who gets kicked off in YOUR opinion it may not be deemed significant enough? Disability is HARD and unique to the individual. For example no two people with cerebral palsy or Autism have the exact same disability but it is significant to that person.

The eligibility to get on the NDIS is that you have a permanent disability so the fact that we have to prove our disability every time we get a new plan is not reflective of a permanent disability. It’s degrading really because our disabilities are NEVER going to disappear today or any time in the future.

By halving our social and community budgets you are literally saying we don’t deserve to go out in public just because we need support. My energy levels fluctuate all day every day and without that support I wouldn’t feel safe to do so. I would say that most of you and the general public when you’re not at work like to go out and meet up with friends at a cafe or even have time to get your haircut or venture to a favourite interest activity… Why are we being targeted for doing the “normal” activities just because we need support?

By allowing the slashing of funds at anytime to a person with a disability’s plan we can not plan ahead of time for. The necessary supports that we need because of the lack of stability of this ruling. Always anxious to know if we can pay our supports if this legislation is granted. That’s no way to live. We have a right to participate. Whether that is a sporting club, working and especially functioning within our communities.

You are going to cause so much more social isolation with the cuts you are proposing which will in turn cause deterioration in so many aspects of a persons life and cost MORE. Prevention of deterioration is better at all costs. As a person with a disability we have the right to stability, dignity and certainty of who what where comes into our lives. We are human and deserve to be treated like one.

As for mandatory registration - that is utterly ridiculous. There is nowhere near enough registered providers to cover everyone’s care. The cost of registrations is

Page 2

absurd to expect the individual contractors to be able to afford to pay and keepSubmissiontheir jobs.2828 Which for every dollar paid to the supports $2.25 is put back in the economy!!! If registrations are a must a self managing category must be included as the people employing their own support workers is critical to ongoing care, choice and control over their bodies and individual decisions.

These individuals often have better continuation of care for the participant than the registered providers. The paper registrations are written on are worthless. My foster sibling was living in a registered home. Registration did not stop her from getting raped by a man that would have had all the “checks” done to be able to set foot into that house!!!

We have the right to choose who we want to care for us.

The NDIA need to read reports, give the reasonable and necessary supports to all individuals rather than waste so much money at the ART. If this was done then so much money would be saved.

The idea that you can kick anyone off if we dont answer quick enough is absurd because we sometimes can’t answer the phone fast enough. We have lots of appointment to attend or we could be eating causing us to choke if we answered or showering and I don’t think you take your phone with you everywhere you go. Most importantly there is no way to know that it is you calling because of the anonymous phone number that you call from. With the amount of scammers in the world how do we differentiate this?

Exhausting all avenues must not force people into invasive procedures if they dont wish to go down that path. Eg a deaf person should not be forced to get cochlear implants if they are able to get other supports and like an interpreter. It’s an invasion of their right to their body.

Reduction in supports will ultimately

• leave people waiting or falling through the gaps.
• Means deterioration to the participants capabilities and require MORE support when “significant” enough to satisfy the NDIA
• A reduction of supports means not participating in the individual things that are meaningful to the participant.
• A reduction in supports will mean some people forced into group setting which will inevitably set their disabilities off ( unable to cope in certain group settings) plus the level of support s not there for them
• The power to make further cuts at any time leaves the participant to live with the fear and uncertainty dignity and stability that everyone has a right to.

All you politicians need to go back and read the NDIS code of conduct because with these sweeping changes YOU are breaking more than one part of the code of conduct and how can we expect providers to obey it if the very makers of the scheme do not?

But ALL providers from the very top to the bottom MUST comply with the NDIS Code of Conduct, so… here some of it is! The NDIS Code of Conduct requires workers and providers who deliver NDIS supports and services to:

• Act with respect for individual rights to freedom of expression, self-determination, and decision-making in accordance with relevant laws and conventions

• Respect the privacy of people with disability

• Provide supports and services in a safe and competent manner with care and skill.

• Act with integrity, honesty, and transparency

• Promptly take steps to raise and act on concerns about matters that might have an impact on the quality and safety of supports provided to people with disability

• Take all reasonable steps to prevent and response to all forms of violence against, Submission exploitation, 2828 neglect, and abuse of people with disability
• Take all reasonable steps to prevent and response to sexual misconduct

All in all the NDIS has made a positive effect in my life. I have been subjected to significant plan cuts already which has changed what i can do and are anxious about losing critical supports in my life if these proposed bill goes ahead.

With the necessary supports in place i feel an important part of my community and that’s a WIN WIN situation because its making my life as “normal” as it can be while achieving the effect of what the scheme was set out to do it the first place.

Please amend some of your proposed legislation to keep this happening and care for the disabled community as it deserve.