Dreaming of Possibilities

Deb's Rave!

The hopes and dreams that the National Disability Insurance Scheme will bring for people living with disabilities and those who provide unpaid care, seems to balance on a uneven seesaw. What I am beginning to see emerge is that different agreements that have between different states and territories, and the Federal Government, sees a different approach to disability care, being adopted around the country.  A reality I find disheartening, when the principle underlying the NDIS campaign was a universal approach to supporting people living with disability and greater access to choice regardless of whether people live in Hobart Tassimia or Alice Springs in the Northern Territory.  

So the anticipated mistrust of governments ability to deliver a disability support system that people living with disability and their families, unpaid careers and those who seek to support them on a daily basis were well-grounded. 

What was known from the outset, under the recommendation of the productivity report, was there was to be a nation wide shake-up to the eligibility criteria . With the promised the more people with disabilities and their primary careers would be eligible for support and the state-by-state regulations on supported career and accommodation would cease with individuals and families to be offered greater choice and flexibility in the way the receive that support.  That was the very essences of the National Disability Insurance Scheme campaign, a principle that disability advocates will not be negotiating.

The scheme must deliver a universal approach to supporting those living with disabilities and those who career for them.  In the push towards early intervention, fostering independence, the needs of families and those who care for them seems forgotten.  Loss in the former labor governments push towards priorities such as employment.    

While I cheer on reform that is founded on social inclusion, real employment opportunities and equality, these much not be at the expense of providing esscentual respite care and providing support to the family unit the live with  24 hours needs of a love one.  Everyone has a breaking point and everyone needs a brake and end to residential respite does not provide that break.

No one wants separation in any form but the reality is that unpaid career like every other Australian, has a right to annual leave.  The absence of being paid does not remove need.  We can debate all we like about what people with liabilities need, what the like, how to define choice, how do we create choice, how do people with disabilities make informed choices after a lifetime with out choosing basic things like the color of their toothbrush, what they want for lunch and what the will wear on any given day.  

As we face the road to a fully operational National Disability Insurance Scheme that delivers full equality to people living with disability and their significant others the challenges to ensure everyone has the same degree of choice regardless of type of disability, lifestyle and postcode are enormous!

The principles of the National Disability Insurance Scheme are not as secured as various governments have assured us.  We as the voice of those who can not speak must not be silence or rest. The right to choice must be secured for every Australia. Every Australian has the humane right to have their rights meet. 

My home

The Journey Home

I remember when I was growing, probably around the age of 12. I thought a lot about the future and what it might look like.  Some of my dreams like making a deal that my best friend and I would share a house seems so crazy now. Other dreams like buying my first car, were possible at the time, but life changes and unexpected things happen. 

My first 'home' of taste of independence was living on campus while studying for my arts degree. At this stage the car thing still hadn't happen as my focus was on getting my degree to get a job, to buy my car. Which was pretty much the story with most uni students.  Besides at the time my boyfriend had a car (for what it was worth, it soon fell apart and was off the road.)

I knew I had a disability which at times cramp my style but at 20 I was still living a life no different to my friends although the boyfriend had ditched me by this stage.  After uni I decided psychology was never going to be my thing and I begun working as a Christian Youth Worker and had my first taste of 'house sharing', still no car.

And then . . . About September the year after I graduated I got sick! At the time the doctors just thought I had a virus, little did I expect to spend the next 10 years of my life sick and develop clinical depression with my weight dropping 45 kgs and eating a chocolate bar would become a major battle.  I quit work and move back home with my parents . . . It was 'home' but not the 'home' I deamt of at 12 years of age.  I was disparately unhappy and wanted a life of my own, without my parents rules.

By then I had learned that I never would be buying my first car.  I had acquired  my third disability epilepsy and as my seizure remain uncontrollable by 25 I knew I would never be able to drive a car and many believe I would never be able to live independently.

It was during this time I became a writer and was writing for a small independent Christian publisher and would eventually publish my first to poetry  book with. And so I realized I had achieved another childhood dream which was to write a book. 

It was quiet the book I saw when I envision writing a book at 16, but it was a book and would be the first of 5 books I would publish.  I co-wrote a devotional book of poetry around the same time.

Eventually there was an opportunity to apply for a department of housing accommodation designed for people with disabilities and at 29 I was 'home'. I was renting a 1 bedroom unit from department. My dream I had a 12 to have my own place had become a reality.  

Today, 15 years later I still live independently in my own home with 22 hours a week in home support through various agencies. 

But my 'journey home', is very different to hundreds of adults with disabilities living around Australia. The truth is I encountered little resistance to build an independent life for myself. I am an exception to the rule.  Inch by inch I have fraught to kept my independence. Only now am I learning of the few choices people with disabilities and the chronically ill have in terms of accommodation. Their journey home is all to often enforced on them by others.

Current there is over 6000 young people with disabilities under the age of 50 calling nursing homes 'home'. These figures do not account for the number of people living in 'group homes' or with relatives against their wishes.

Independent Living options the Young Care is one of the few
options for young people with a disability.

The official Department of Communities policy known as Growing Strong. The rhetoric begins with Your Life, Your Choice!   For the the 100's of Queenslanders living in nurses homes, and their families, their are no alternatives for those needing 24 hr assistance.  The Young Care alternative is individual independent units for those with disabilities that still allow them to have some level of independence for the majority of the day, while having 24hrs on site assistance when it is required and I am aware that there similar accommodation arrangements available through Uniting Care and the Cerebral Palsy League.   .

Somewhere between Nursing Homes and Young Care sits what we term 'Group Homes'.  These 'homes' are shared by a number of people with disabilities who require a high level of care. The homes are 'staffed' 24/7, with staff often making daily choices for their clients. While often the decision for a person moving into a 'group home' is made by a parent of guardian, under the current department of Communities regulations, a person can be force into a group home because funding for that individual to live independently is denied. As we saw previously with Rosy.

'Remember Rosy's fight with the department'

   The choices for young people living with a disability and those with chronic illness remain very limited. If you'd like to help build more accommodation options for these people you make a donation through  Young Care or Building Better Lives click on the links. 

Of course the introduction of the National Disability Insurance Scheme  (NDIS) is home to go along way towards addressing the accommodation needs of young people with disability and established them in independent lives. With the Federal Election looming and the legislation  only being in draft from, these are worrying times not one those searching for accommodation options but all people with a disability and their families.   

After years of campaigning  the continuing steps towards the full introduction of the NDIS hangs on a knife edge. These reforms and the accommodation needs of people with a disabilities needs to be high on the political agenda and debated vigorously through the election campaign in order to ensure more and more people with a disability can find their way home.