Where does one start after caring for an intellectually handicapped daughter since 1982? Before Sarah came along we functioned like most normal families with two very young active toddlers, Daniel aged 4 and Vanessa aged 2 and after Sarah came along we endured one constant battle after another.

By the time Sarah reached her first birthday we knew something was not quite right but I was told I was a neurotic mother and stop comparing her with the other two children and not to stress. By the time she reached 2 my stress level reached its peak and decided to have a private assessment which clearly showed I was correct in worrying about her progress.  Speech was quite delayed and her mobility very poor. Not long after we were referred to the Children Development Unit for a full assessment; Sarah’s assessment results indicated:

  • Functioning in mild to moderate range of intellectual handicap
  • Attention deficit disorder with hyperactivity
  • Significant specific deficits in social maturity, language & motor skills

With these results Sarah qualified assistance in early child hood education and was accepted into preschool that provided special education needs.

Sarah also attended Macquarie University for special preschool /school education preparation classes and the following year she was accepted into a special education unit within a normal school and we believe this was when Sarah’s behavioural problems began. She was constantly ridiculed by the normal stream pupils and regular fights occurring on a daily basis. Naturally, Sarah retaliated and was always the culprit regardless whether she was at fault or not because she was the loudest and always in trouble. This continued throughout high school where she was constantly in trouble or suspended from school and at this stage we decided to transfer Sarah to a special needs school that catered only for special needs children. Sarah flourished and enjoyed her last 2 years at school. Believe me integration rarely succeeds but Professionals in their wisdom think otherwise.

Sarah has been working in a sheltered work shop for the last 10 years with some behaviour problems but with an understanding staff we have introduced procedures for her to follow. She has been currently diagnosed with severe hearing loss and now wears hearing aids. Amazing it took 27 years to realise she had a hearing loss. This probably explains her frustrations, anger and her loudness throughout her growing years.

Our family summer vacations were a nightmare for all. We had a permanent caravan parked at Umina Beach for a few years and believe me driving for about an hour was torture for all with Sarah constantly attacking and screaming with her brother and sister until we arrived. We were too exhausted to enjoy our holidays listening to her constant whinging and running after Sarah. Everyone at the Park knew Sarah and many times her screaming was heard by all. It was at this stage we finally brought a Tarago that catered seating for 8 and Sarah had her row all to herself. This eliminated the scratching and biting while travelling but not her behaviour and constant whinging.

We believe Daniel and Vanessa missed growing up in a relaxed, normal family lifestyle but thank God both fortunately have grown into responsible mature young adults settling well into their chosen profession. Daniel now lives on the Central Coast and has his own optometry practice and Vanessa is married with 3 young children under 6. How they managed to survive in our household remains a miracle and no wonder both left home early. (More guilt l carry).

I’m also a sole carer for my chronic schizophrenic, incontinent, immobile elderly mother who still lives at home next door to us. She requires constant attention with medication, personal cleaning and just about everything else. I remain sane by working 3 days at the NSW Cancer Institute. The other 2 days l care for our 3 grandchildren while Vanessa goes to work. My husband was made redundant in 2001 and then became the full time dad caring, cooking, cleaning, chauffeuring and sharing responsibilities. We are both reaching retirement age but there will be no retirement, no well deserved overseas/special holidays, no carefree relaxation only more stress and deterioration of our health.

Sarah is now engaged to a wonderful guy who has similar disabilities and believes she has the right to get married and live in her own home just like her brother, sister and her peers. People with disabilities share a common concern that their individual support system should be available, reliable and flexible enough to respond to their needs at all times in their lives. We didn’t have the heart to tell her at this stage unless we have support from the government and the community by providing suitable land to build our cluster housing their dream will only remain a dream and we will go to our graves very depressed and shattered elderly parents regardless of all our past efforts.

We thought we won the lottery when Sarah was offered a supported accommodation in a group home in Eastwood in 2007/2008. Oh how disappointed we were! Firstly, we were promised that the house would receive a total of 20 hours of support divided by the 3 clients from Monday to Friday only (clients had to care for themselves over the week end) but Sarah would be lucky if she received 3 hours of support during the week and would come home every weekend. She was lonely and isolated away from her family, friends and work. Sarah’s behaviour and mental state deteriorated during this period.

Secondly, the carers had to travel from the Fairfield and Liverpool areas and during the Christmas rush the travelling time impinged on the total of the hours shared by the clients. I was constantly travelling to the house to support and resolve problems with the clients during the seven months she was there. When Sarah voiced her concerns with the staff with certain problems we were advised by management that Sarah had reached her potential and was ready to move into her own accommodation. At this stage we decided Sarah would be safer and happier moving back home.

On one occasion an intruder came into the back yard to use the outside toilet and when the security lights came all the clients were afraid with no carer close by for support. One of the clients decided to investigate and go outside, what a dangerous situation but fortunately the intruder had disappeared. There was no security gates for protection and to this date still not installed.

Unfortunately, the major problem no one knew each other and personality and abilities were not taken into consideration and it was obvious unless you had a high function ability some of the clients were unable to cope and therefore had to move on which was quite disturbing for the other clients. This situation would not have occurred if an established group of clients all knowing each others needs networking together.

Past experience has been that the success of the group home is dependent on good permanent staff and compatible residents. Both are likely to change at any time and cause extreme problems for vulnerable residents. There is a degree of isolation as they are limited to the people in their group home and they cannot socialise with other group easily. Clustering would facilitate this and I believe our RASAID group will prosper in this environment because all members know each other’s needs and will support each other.

We as parents of an intellectually disabled daughter know the heartache of the day to day life and add to that the anguish of knowing that no provision has been made to date, nor is provision likely to be made, for her to live with dignity in a group home after we are no longer able to physically attend to her daily needs. When we die (our only certainty) our daughter will probably be let loose in a community that she can’t cope with, or be locked in an institution. May Sarah’s dream and ours become a reality before this occurs.