Molly’s story
It wasn't until Molly took her story to the media that she could actually get the support she needed. The following is in Molly's own words.
I sat in the hospital for 12 months before disability services assessed my case and approved an adequate disability support package. This however was not very helpful as they said they didn't actually have these funds to allocate to me!”
I was eighteen, and was told my only option was to move into a nursing home. As a child, I was able to walk, run, ride and swim like other children. However, when I was twelve years old, my physical condition began deteriorating to the stage where I was unable to sit up without support and I became dependent on others for my care.
At this point, I was diagnosed with an early onset progressive neurological disease.
When I was 17, I had a severe episode, and was admitted to a private hospital. Although I continued to have a bright and active mind, my physical condition worsened during this time to a point of functional quadriplegia, with the use of one hand only.
After one month I was stabilised and was ready to be discharged. As my father does not live with us, my mother had always looked after me. However, I now needed much more support than mum could help me with, and I could not leave the acute rehabilitation unit of the hospital until this care was arranged.
I sat in the hospital for twelve months before disability services assessed my case and approved an adequate disability support package. This however was not very helpful as they said they didn’t actually have these funds to allocate to me!
In the meantime, I was sitting in hospital with nothing to do, taking up a bed that could have been used by someone who actually needed it! The cost of staying in hospital was much more than I needed for a support package! During this time, my mum took unpaid leave from her full-time job to visit every day, while she tried to navigate the complicated disability system to find a solution.
We were told at this stage that the only option I had was to move into a nursing home. We were shocked. We decided that we would tell our story to the media.
Soon after this, I was offered a place in a supported unit. Although this looked to be a great solution, we had to think about some important considerations. Some of these issues were:
- Does the support provider have expertise in supporting my particular high and complex needs?
- What about my ongoing rehabilitation needs?
- Can they provide transport and access to rehabilitation, acute care and other allied health and clinical services?
- Is there adequate case coordination to manage the links between health and disability services?
- Can they accommodate my community and social activities to assist me in leading an enjoyable and fulfilling life?
- Am I compatible with other residents? These people are going to be my neighbours and housemates after all
Update
Molly recently moved into her new home and is settling in. Whether this home is a success or not is yet to be seen. If her new home is able to support her appropriately, she will be able to make choices about how she lives her life and be part of her community.
However, if her support is not adequate, Molly is likely to find her health will decline, resulting in re-admission to hospital and starting a merry-go-round of moves between the hospital and her home.
As well as the obvious distress for Molly and her mother, the expense to both the disability and health sectors will escalate, far exceeding the cost of a well planned, appropriate support package maintaining Molly’s ongoing health and wellbeing.
