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.