Sandra Scott Fraser

My name is Sandra and I am the mother of four adult children. The youngest, Scott, will soon be 21.

Scott was born with multiple disabilities. I remember just praying that he would survive, as he was on life support for the first three days of his life.

I admit that I have occasionally wished Scott hadn't survived. At times I have felt overwhelmed trying to care for him. He screamed constantly for the first six years of his life, especially when we were out in public; he didn't seem able to cope away from home.

Transitions

Scott's disabilities include cerebral palsy, epilepsy, intellectual disability, and Asperger's (autism). I love Scott so much, but at times despair when thinking about the struggles I now realise will continue for the rest of our lives.

Our latest nightmare is financial.

I am living with my elderly mother due to the breakdown of my marriage.

I am in a terrible financial position, as we have been unable to sell our family home due to the recession.

Job hunting

I haven't been able to find a job, so receive the unemployment benefit.

After my years of caring, I retrained for work as an office administrator, and have applied for so many jobs since, without success.

Perhaps the problem is my age (49).

My self-esteem has taken a hammering, so I have given up hunting for work for the time being.

Financial strain

Scott stays with me at the weekends. I collect him from school on Fridays, and he returns to his care residence on Sunday nights.

I have little money to live on myself, and am terrified that I will have to stop having Scott at home for weekends.

I can barely afford petrol to run my car, and travel many kilometres each week for Scott's home visits, medical appointments, and trips to see him.

Scott has a hearty appetite, so I have to keep a constant supply of food for him as well. I asked Work and Income if either Scott or I quality for any assistance with transport and food. As Scott receives the invalid's benefit, I was told no further help is available.

Dilemma

My son is in the care of IHC during the week, and most of his allowance goes towards his care. He is left with a $50 a week for toiletries (shampoo, shaving gear, soap, toothpaste, deodorant), spending money, school fees, clothing, shoes, medical bills, and the hire or purchase of Playstation games, which are Scott's main source of recreation and enjoyment.

Playstation is extremely important for Scott. He doesn't watch television, as it has no meaning for him. I was thankful to discover Playstation, as previously Scott would become so bored he would have tantrums.

He has never had any interest in toys, and has no friends to interact with.

Allowance?

I was recently told by another parent that Scott might be eligible for the Disability Allowance to assist with extra costs.

I got the appropriate forms from Work and Income, only to learn that we needed a doctor's certificate to prove that Scott has a disability. Work and Income already has all of this information on file.

Scott's disabilities are severe and permanent. It seems unfair that we have to visit the doctor and complete yet another piece of paper, at a cost of $15, just to apply for this benefit.

When asked, Work and Income said the Disability Allowance has its own form , which needs to be filled out separately.

Work and Income now tell me that Scott is the one who has to apply for this Allowance, as he is over the age of 18.

I have explained that Scott is not capable of applying in his own right, and was told I must see a solicitor to obtain a Power of Attorney for Scott so I can apply for the Disability Allowance on his behalf. As I have no income, I can't afford to retain a solicitor.

The Work and Income case manager also suggested that I bring Scott with me when I make the application. I do feel resentful about being asked to parade my son like a circus animal so decision-makers can see his disabilities for themselves.

Next steps

Interestingly, Scott and I had previously submitted an Agent's form at Work and Income so I could represent him, but this has expired.

No one contacted me to renew it.

I believe that staff at Work and Income and other publicly funded agencies should be required to undergo training so they can better relate to people who have impairments and their families.

I have since discussed my financial issues with the manager of Scott's residential service, which was useful.

I know that in time my financial woes will be sorted, but accept that hassles like these will continue for the rest of our lives. Scott will always need my support and advocacy, and no matter how difficult things get, I will always be there for my son!