NDS Summit

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NDS Summit

• Presented by Maree Ireland
• Wednesday 1 July 2009

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What disability supports mean to me.,

• My name is Maree Ireland. I will give a brief
  background to my life. I did my primary and
  secondary education at Yooralla schools. After
  going before a panel of experts, I was told all
  I could expect my future to be was in sheltered
  workshops. After 13 years of struggling with
  frustrations and feelings of uselessness, I
  started studying for a BA at Deakin University.
  After a year of this, a friend suggested I try
  studying on campus at Melbourne University. I
  applied to do on campus study, and I was
  successful. I then met with their Disability
  Liaison Officer, to discuss the assistance that
  I would need. I was provided with note takers,
  library assistant, and an assistant in a café for
  meals. I went on to complete a Law Arts degree
  and then worked in the advocacy sector for 12
  years. I now work at Field as Project
  Co-ordinator. During this time I was also able
  to set my self up in a house with disability
  supports.
• The reason I have told you all this is because I
  believe I have experienced 2 types of disability
  supports. The first type was in segregated type
  of settings, where the person with a disability
  had little or no control of who or when you were
  assisted, for example toilet breaks were at a
  set time..

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At university and living in my own home.

• When I started at university, it took me awhile
  to realise, I was now in control of my own day
  (i.e. nobody telling me when to eat or go to the
  bathroom). Now, the disability supports were
  there to assist me, when I wanted and needed
  them. It was the same when I moved out of my
  parents place. and into my new house. It took
  me awhile to get used to the fact that it was me,
  (not mum) deciding what to cook, when to clean
  etc. Now there was only me, with the assistance
  of support workers.
• In those days (mid 1990s), I was able to
  interview potential workers and then be able to
  choose people who had the appropriate skills, and
  also people whom I had a rapport with. As time
  has moved on, sadly the above process has almost
  gone, and these days, due to a lack of workers,
  and because we cant exist without workers,, we
  have to sometimes, accept workers we may not feel
  a rapport with.
• The relationship between a support worker and a
  person with a disability is a unique one, in its
  very essence, because of the work involved, and
  the place in which the work occurs. It involves
  very personal work in a persons home and, I
  believe people should be ABLE TO FEEL COMFORTABLE
  WITHIN THEIR OWN HOME. This cannot always happen,
  if there is not always a rapport or a sharing of
  similar values with support workers. Sometimes I
  think we may be going back to times when people
  with disabilities had little or no choice over
  who assisted us.

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Type of services in the future

• If I could answer this question in a vacuum,
  without having to consider the current realities,
  the type of services, that I would like, would
  have a few criteria. However, before I elaborate
  those criteria, maybe we should go back to the
  beginning when the concept of attendant care was
  first thought of, and advocated for by people
  with disabilities such as Rob McNamara, Geoff
  Bell and Mary Reid. The concept was to find
  workers within the local area, to work for people
  with disabilities to assist them to live in the
  community. These workers would then form a team
  for that person. They then formed co-operatives a
  and operated in a manner of respect and mutual
  co-operation.
• Then the concept of attendant support grew, and
  support agencies came into existence, to supply
  disability support workers. This introduced a
  third party to the equation. As time has
  progressed, people with disabilities feel the
  management of our disability supports, has slowly
  been eroded. This has occurred through
  introduction of certain legislation competition
  between agencies, and the depleting availability
  of workers.

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• Now, maybe the tide is beginning to turn around,
  and people with disabilities are wanting, to
  various degrees, take back management and
  control of the manner which our disability
  supports are delivered.
• I believe, we want disability supports to be
  delivered with the following principles. However
  as I stated before, the reality of the current
  environment around disability support, may not
  lend itself to the following criteria. But
  hopefully we can work towards these criteria once
  again. The current moves towards self-directed
  funding and self-employment are all policy
  initiatives which will assist people with
  disabilities to have more control over the
  delivery of their supports. I will discuss these
  principles in the next slides.

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• 1. Choice of workers.
• The first criteria is being able to choose your
  workers. We should be able to meet and interview
  workers, and then be able to choose workers, with
  whom they feel a rapport with and share the
  same values. In my own situation, I have just had
  to change agency because the workers I was being
  given were not suitable. Even after saying this
  to my co-ordinator, a number of times, I was told
  these workers were all that was available in my
  area,. After putting up with this reason for
  several months, I decided to move to another
  agency. Over the past few weeks, I have met with
  several co-ordinators from the agency, and have
  met with several support workers who seem more
  appropriate for me to work with.
• I started with the new agency this week, and so
  far things are going well. I feel there is
  always a honeymoon period with new agencies,
  where they are keen to assist the new service
  user. (I just realised and hope Im not saying
  this to my own detriment). However, there seems,
  after a period of 18 months to 2 years, the
  keeness to assist disappears, and a be
  grateful for what you get attitude creeps in.
  Again Im basing this on my own experience but I
  have also heard friends say similar things.

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• I guess this is why some people with disabilities
  are keen to take on all or some of their
  Individual Support Programs. We want to have
  control and input into who assists us with our
  lives . Sometimes Co-ordinators have said it
  doesnt really matter who turns up, as long as
  someone turns up to assist you with a meal or
  whatever. well, sorry to say, but it does
  matter! That situation may be ok as a one-off
  situation, but not as an ongoing situation.
  Would you like a stranger or someone you didnt
  feel comfortable with assisting you?
• Another issue for me is cooking. One of my
  philosophies in life, has been, if I cant
  physically do something myself, then I dont need
  to learn HOW to do it. So with cooking, I know
  absolutely ZILCH. So for the last year or so,
  Ive had this one worker,, who was a lovely girl,
  but had no idea about cooking. So, she would keep
  asking me how to cook something talk about
  having pot luck. Also frozen food sales went up
  in my area. Then in recent weeks another
  co-ordinator came to assess that worker. She
  made several suggestions and recommendations but
  she wasnt taken off my program. This led to my
  decision to leave that agency. For me, ,it was a
  confidence thing, the fact that she had to ask
  me how to do a task which I knew nothing about
  was not good.

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• 2. Flexibility.
• The second criteria is flexibility. We should be
  able to choose the times we need support without
  feeling it will be a problem or issue, or need to
  do it within a certain timeframe. I believe
  workers are there to assist us, not hinder us. So
  we should be able to request a time change, with
  reasonable notice, that is, within a few hours
  notice without being penalized in some way. Of
  course that works both ways, if a worker wants to
  change a shift time and, if I can, I will. Most
  agencies, I have been with are accommodating
  about this, to a point, but some agencies
  require 48 or 24 hours notice of any change.
  That requirement was a deterrent to me to
  choosing that agency.

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• 3. Quality.
• The third criteria is Quality. As I said before,
  the relationship between a support worker and
  person with a disability is a unique one. I
  dont know that this is realised properly by
  people in this industry or by government. I get
  the feeling sometimes, that the
• general opinion is that anybody could do this
  job. I disagree. It takes a certain quality of
  person, with the appropriate attitude, empathy
  and skill to do it. I believe a potential worker
  must start with an empathy, a feeling that one
  can relate to the person.
• This relationship became the subject of a pilot
  project undertaken by field, in 2008.. The
  project selected 5 disability support workers,
  and 5 people with disabilities to go on a 10 week
  journey, to discuss this relationship and the
  issues that it sometimes raises. This journey
  led to the development of a website called Not
  just Work. This site has many stories and
  information about many relationships and we are
  looking for and welcoming of further
  contributions.

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• I said before the relationship starts with a
  feeling. However, the rest, that is, attitude
  and skills, can be gained through continuous
  learning and development in some form, and
  especially with the person you are working with.
  The criteria of a good worker should not solely
  be based on having Certificate 4 training. By
  doing so, it excludes potentially good workers,
  and limits the choice of the person with
  disabilities to employ potentially good workers
  of their own choice. The essence and quality of
  a good worker should be recognised by the person
  with a disability first, and then by the desire
  of the worker to undertake continuous learning
  and development in various forms.

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• 4 Better profile.
• The fourth criteria is developing a better
  profile of disability support workers. I always
  try to explain to people, I come in contact with,
  that I would not be where I am today. if it
  werent for my disability support workers. Some
  people then say Im exaggerating, or ask what are
  support workers? Then, I either have to explain
  what they are, or leave them wondering. So the
  profile ands status of disability workers
  definitely needs to be raised and recognised for
  its importance and necessity.
• Field are trying to develop a DVD, around the
  disability support worker and their importance to
  our lives but we are waiting for funding.

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• 5. Better working conditions.
• The fifth criteria is creating better pay and
  working conditions for disability support
  workers. Following on from raising the profile,
  we need to raise the income and working
  conditions of disability support workers. At
  present, we are facing a crisis in the
  availability of support workers. Unfortunately,
  one reason, I have heard stated is, Id love to
  do it, but I can get more at Safeway or cleaning
  toilets. So the wage and working conditions
  need to be raised to the status it deserves. This
  needs to be recognised and acted upon by the
  appropriate powers immediately.

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The effect on me if services were reduced

• I was asked to talk on this topic. But, it was
  the hardest topic, because it is something, I
  have never contemplated, nor do I want to.
  Before I had the services of support workers, I
  lived with my parents til I was in my thirties.
  However, this is no longer an option. So that
  would mean going back to congregated services.
  Im afraid, that is no longer an option for me,
  nor for the people I would have to share with. I
  have lived too long in my house, and am too set
  in my ways to be forced upon other people.
• And, yes I can hear people probably saying she
  doesnt know how lucky she is. This is true to
  some extent. I made moves for services at the
  right time and received them after waiting for a
  couple of years. I know people who have waited
  longer than me and some are still waiting.
• Now we have the situation where we have
  increasing unmet need and no or little increases
  in funding.
• This is neither fair nor right and we need to
  fight it again!

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The purpose of the campaign

• The purpose of the campaign is to position
  disability as a vital community issue for
  government, and secure broad support from
  parliamentarians and other community members for
• the right of all people with a disability to
  access disability supports
• government funding that covers the real cost of
  service delivery...
• people with a disability to participate fully in
  their community so they can have a fair go.
• It is time for the Commonwealth and State
  Governments to make the rhetoric of control,
  choice and self-determination for people with a
  disability a reality.  The reality, is that
  Victorians with a disability risk poorer services
  and less choice, unless disability service
  organisations receive a commitment from the
  Victorian Government, to fund the real cost of
  disability services.  Services can no longer
  absorb the costs of new compliance measures
  without impacting on the quality of the services
  they provide.
• Thank you.