Giving Voice

Dear Minister,

Since you are intent in silencing my voice through moves such as the dismissal of an independent commissioner for disability rights and the ABC has axed it online news service, which gave those like me a voice. I thought I share something of my day, which started at 7:30 when I got up for work. 

Normally I attend class at the Brisbane institute of Art on a Monday, but we are on Semester break, I decided I'd take a client to an art gallery to research ides for his next project.  I mentor artists with disabilities and mental health issues in the process of their professional development. However because my wage is dependent on securing grants, I may only be paid for six months at a time, Centrelink refuses to accept I am  employed.  However, I do not escape the tax man. 

Today, again I here you want people like me and my clients to be working.  Fine, the truth is most people with disabilities would love to find employment to fill their days and to have an income that helps pay for the increase of cost of living due to their disabilities, things like wheelchairs, walk aids, medications, medical assistance, home and car modification, however the perception of  most employers is that employees with disabilities can not deliver a 100% even when their disability will not impact their job performance. 

The myths and prejudices around people with disabilities are alive and well, but thanks to your government our voices from tomorrow are silenced. Anyway back to my day . . . 

I was doing some basic admin when I got a call to say my support workers car had broken down and she didn't know when she'd make it into work. Was she coming in to work or not?  They couldn't tell me and their was no back up worker who could get me ready for work. 

Fortunately my mum was able to come over and make me presentable for work and I had alternative transport booked.  Apart from the hassel of phone calls while getting ready and not being able to have a shower, (my mum had enough time to do the finishing touches like my hair and put my shoes on) before my transport turned up.

My point is the 'little things in life' that go wrong, like the car not starting has a greater impact on those living with disabilities.  As resilient as I am it plays on my mind, some people are waiting to prove I am unreliable simply because I have a disability called 'epilepsy' which is uncontrolled by medication.  However if I didn't get to work today it wasn't my fault. 

The life of those of us that need assistance to leave the house is not as easy as you make it sound.  

We depend on others to be on time, we need to check out all accessibility issues. I have ant medical emergency system to keep in place when unaccompanied, most people I deal with assume I have an intellectual disability because of my speech disorder, the idea I on my way to work, paid or unpaid is inconceivable.

Today I learn you think I need to look for paid employment.  I wish you knew how hard it was to swim up steam. It is exhausting. 

So if you think all people with disabilities are lazy, I hope this gives you food for thought.

Regards,

Debbie Chilton

     

People Like Us

People like us

The concept that I should be isolated, by labelling because I have a visible physical, intellectual, behavioural or any other disability, serves only to feed people’s fears and misconceptions. As long as we insist on labelling and discussing incompasity a social inclusion model or any social support system is not going to work.  Sadly that at the present time includes the NDIS.

The foundation principle for the frame work of the NDIS is that we are all equal and as Australians living with disabilities we are entitled the same as everybody else. In terms of the NDIS we’re talking about lifestyle choices. Choices around:-

·       Schooling

·       Education

·       Employment

·       Postal Address

·       Sport

·       Type of dwelling

·       Hobbies

·       Access to therapies and services

In part until now the lifestyle choices for people living with disabilities has been determined or at least restricted by their post code or access to income.  A choice to live in Alice Springs for a family with a child with profound disabilities is not realistic, unless the family has decided that living in Alice Springs is more important to them than accessing specialized educational services and therapies to enable the child to reach your full potential.

Here I want to say, that is their right! That is there choice! Therefore, that is the right choice for their family.

In some cultures the family or “the clan” is the most important structure in their life (or lifestyle), such as indigenous Australians. However, the perception is the Gen Y’s tend to be self-indulgent.  They want to live in the here and now!  They may feel that they need to live in the middle of the action!

No one truly questions you post code, unless you or your family are living with disability.  Suddenly because I am different in one way or the other,my “lifestyle choices” can be questioned. The socially acceptable “norms” shift. As a single female with a physical disability, it I chose to live in Kings Cross – Sydney NSW my decision would be questioned. Even though I have a degree and proven abilities in confident in decision making.

Hang On! What happened to my life, my choice?

Where did my right to make choice end? Simply because you ‘feel’ the right to make a judgement on my choice?  If I am not making a choice that is illegal and I don’t have an adult guardian then no has a right to stop me from living in Kings Cross. Now, if I wanted to become a drug dealer, and required my support workers to use a gun and inject my drugs, then that a different matter.  The very labelling system we use to help those living with disabilities gain the support and assistance that they need, divides us. With the disability label comes this sense of ‘the right to judge our choice’. Whether or not there is an intellectual or cognitive impairment.

Before we even think about how the NDIS will shape the disability sector under privatization and market driven forces. While you argue if someone with cognitive functioning disorder has a right to be supported to see an adult movie or if people with intellectual disabilities have the right to have a relationship. Before you begin to argue that a person is not able to live independently.

I argue you haven’t grasped the very foundations of lifestyle choice and how it affects the NDIS. Before you argue hours, types of supports, programs, organizations, personnel, specific, goals and certainly activates and if a client can have vegemite on toast for breakfast, you need to pick up your camera and refocus. Under the NDIS diagnoses’, labels and negative attitudes are not central in the planning of support needs.

The planning process is around the persons goals. These goals will be largely influence by an individuals or families lifestyle choice. Someone living in Mt Isa is not going to want to be supported to have surf lessons. Before we talk about activities and what you think their week should look like or if they can be supported to go night clubbing, you need to grasp what a lifestyle choice is and the types of decisions lifestyle choices affect, such as housing.

What areas of their lives are involved and ensure the social norms and expectations aren’t going to change simply because a disability is acknowledged. We do not said to some because they are indinigious they can’t live in the city. Yet we tell many people, too many people in my opinion the need to live in a group home or supported accommodation. How would you like it if the government decided it was in your best interest to live with a bunch of strangers because your family could no longer carer of you or to move you to a group home on the Gold Coast when you’ve lived in Toowoomba your whole life?  What if I chose you friends, the people I think it’s ok to hang about with? This is the type of disempowering environment people like ‘us’, people with disabilities, live under.   

We don’t want to choose what time we go to bed, we want to talk about where we live, if we can work, what support we need to find work, and what type of lifestyle we can then afford.  Maybe living on the DSP means I can’t afford sky diving lesson or to go out drinking every Friday night.

If the NDIS is to work people need to grasp the people with disabilities are just like us. They too are connected and plugged into the world. People with disabilities are somehow connected to someone, even if that person is not presently in the person’s life. Everyone had a mother at some stage. Regardless of the level of impairment everyone has some level of emotional attachment to someone. To be human is feel and to make choices. As humans we don’t always make the right choice.

Some of us chose to smoke or drink too much alcohol. Many people chose to eat the wrong types of foods or too much of the right kind of foods.  Mostly it’s only our GP’s that question these choices.  People living with disabilities shouldn’t have to justify eating a pizza.  People living with disabilities are just like us.

The make both good and bad choices, just like you. Until we drop the labels and stopping moving the goals posts according to a diagnoses we will never experience the joys of living in a inclusive society. The NDIS cannot, on its own achieve this goal.

Only when we are seen as people like you, will our choices not be judged.

   

    

NDIS Trails Outcome Summary

Are you ready for the NDIS?

Committee hearing into the trail sites for the National Disability Insurance Scheme (NDIS) has highly much confusion; lack of planing and inconsistency. Initials findings should many participates (especially those who had not been previously supported), were significantly unprepared when entering the planning stages of the NDIS package. 

There was also much confusion with staff as to what could be included in the funding package and what couldn't. Some examples are taxi subsidies, affordable housing, therapies, and service unit pricing.

The key challenges for the NDIS that have emerged over the last 12 months are:-

1. The need for the use of strong advocates in the planning stages
2. A strong knowledge of your disability, how if effects you and your support needs.
3. Lack of flexibly in the funding  
4. Differences and irreglaurates between the trail sites e,g. Some states subsidies taxis and others didn't.
5. Finical risks for services providers praticually when unit prices was not given careful considerate. 

The source for the above summary is Checking up on the NDIS as a service user and a service providers these findings are disappointing. Especially when one of the key promises of the NDIS was flexible service delivery.   

For anyone entering into an assessment and planing stages with the NDIS agency staff I recommend

1. Carefully chose your independent advocate who will support you through the process. Chose someone who know you and how your disability affects your lifestyle choices well. You want support services who will support you to have the lifestyle you want. 
2. You or your advocate reads all information and documents on National Disability Insurance Scheme Website. 
3. Being able to clearly define you disability and support needs.
4. Researching services providers in your area. Having a comprehensive knowledge of what different Service Providers see List of Providers (Note all service providers funded under the NDIS will need to be registered with them even if you op to use a generic service, such as a home cleaning services.
5. Know the base rate of any service you think you may meed.  e.g. Personal Care; Transport; Physio; or early childhood intervention.  Even if you do not intend to self-manage.
6. Do be rushed, bullied or pushed into choices that won't suit your needs, have your list of alternatives ready. 
7. Contact advocate service if you need advice or feel unsure.