I’m in my 20s but had to spend four months in aged care because there was 'nowhere else to go'

Issue 
Too many young Australians with disabilities are dwindling their lives away in nursing homes and other institutions.

People with a disability or a mental illness and their families have not had sufficient access to the services, programs and funding necessary for fully independent inclusion in society.

For a person with a disability to participate in the community, in many circumstances, equipment and organisational assistance is needed.

There are many aspects to the inclusion of people with a disability in society and their ability to have a full and meaningful life: social engagement, meaningful participation, education, employment and general activities of one's life and the availability and funding for necessary specialised health care.

The most important aspect is the right to have choice and control over one's life. An issue I am particularly passionate about is the right to appropriate living standards and housing.

Too many young Australians with disabilities are dwindling their lives away in nursing homes and other institutions. Australia needs to put a hasty end to this issue, which should have been resolved at the end of the 1990s. The lack of available housing and support opportunities needs to improve swiftly.

Families and carers of persons with a disability have long struggled, trying to fight their way through the system. Fighting for fairness, dignity, equity, and the right to have levels of choice and freedom in their child's life. Parents want to help their child be the best they can be, to have a life that's not so clinical, but fulfils, to a point, the concept of 'normal'.

There are those who, for several reasons, have had to endure life in inappropriate living conditions, simply because there is “nowhere else to go”, especially for those with higher needs. It is unacceptable, in this day and age, that people as young as 16 (or younger), are placed in institutionalised environments with those who are 40, 50 or 60 years their senior — or, in correctional facilities, as seen in a case in Western Australia.

I was born with spina bifida, and am in a wheelchair as a result. Until a couple of years ago, I was an active university student. I had the average hectic life of a 20-something. In the middle of 2012, a recurring health condition reared its ugly head once more, in the form of a stage-four pressure sore (one of the perils of being stuck in the wheelchair).

I was hospitalised for three months, going through daily treatments and (in my head) seemingly unnecessary interventions.

Afterwards I was transferred to transitional care in an aged care facility.

I spent four months at this place, feeling isolated and alone, with only the rare few who I could truly confide in and trust. I felt like I was going mad, losing control. I shut myself off, most of the time in my room, as if I didn't fit in. Well, I didn't really.

I was then transferred to where I am now, and have been here for more than a year. Everyone is fantastic here — I cannot speak highly enough of the nursing staff — but it is still an institution that houses those two, three or four generations ahead of me. I am confronted with aged care-related end of life circumstances daily, which has led me to depression on a couple of occasions.

Despite this, I am trying hard not to let this damage my outer leather. Rather, I’m trying to defy the constraints of residing in this environment as much as possible. I am hoping that the National Disability Insurance Scheme (NDIS) can help me make the slow path back to recovery and the independent life I want to lead. Where I can be free, to be me.

No young person should be forced to live in an environment where they feel isolated or alone. Rather, they should be able to live a life of their own choosing, within the community; to live with those of similar age and ability; to live a life of independence, dignity and freedom; to live a life where one can have free choice and thought, over the simple aspects in life; to be able to let friends, family and partners into their living environment.

Families of those with a disability should be kept together, rather than torn apart, due to a family member being admitted to a facility. To live in an environment that you feel proud to call home, where you can be free to be yourself.

In dollar terms, a manual wheelchair can cost up to $6000, an electric one $10,000. Care costs can run into tens of thousands of dollars.

For this and many other reasons, it is imperative that the NDIS and its current structure are retained and developed in the future.

Those living with a disability and their families should be able to access the help they need in an equitable manner, without any financial hardship; to access appropriate accommodation opportunities; to have gainful education and employment.

An assurance from the current government, particularly considering the undesirable reshuffle of cabinet, that the NDIS is here to stay would be appreciated from many Australians with a disability and their families.

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Comments

Hi,

I recommend all interested stakeholders make a submission to the Senate inquiry that will look at the adequacy of existing residential care arrangements available for young people with severe physical, mental or intellectual disabilities in Australia. Submissions close on 6 February 2015.

Read the full terms of reference and make a submission to the inquiry at the committee’s website below.

http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community...

Regards,

Michael Johnson