We are parents of twins Luke and Erica who were both born with a disability. After the initial shock we made the decision that we would always ensure that they would enjoy a happy, and as normal life as possible.
As Luke and Erica became older the goal we wished to achieve was that one day they would have the chance to live independently from our family just like other young adults. We made contact with DHS and entered the twins name on the waiting list for permanent accommodation.
As time went by frustration was beginning to set in, as they could not understand why they had to wait for such a long time to become independent. DHS funded us for some weekend programs to allow them more freedom, but this only plugged the discontent for a short period, and did not resolve the underlying problem of a permanent home for the twins. Unfortunately as time went by the twins became more determined to leave home, thus creating an atmosphere of frustration and anger towards us for not being able to meet their desire of independence.
I had met another mum who had a son living in a DHS Community Residential Unit which she was unhappy about because of the age group mix of the clients in the house. We decided that we would work towards creating a home for our children that would be a happy, safe, and allow community access for them, thus enabling them lots of interaction with other people and a chance to have some freedom like other young adults their age. We approached DHS to see if they were interested in helping us to achieve this goal. We were told to create a model for this house, and then the department would look at it.
Over the two year period we faced many rejections by DHS. They constantly responded to us that there was a lack of funds each time we approached the department. Over this period we faced an emotional rollercoaster of frustration, anger tears, depression, to the extent that you wonder whether life has any quality for anyone in your family.
We continued to try to achieve this home for our children by visiting and contacting as many people that might help us; we also kept in regular contact with staff at DHS. Eventually on our last visit to the department they stated that they would look at funding this home for us but we had to produce a model that they thought would be workable. There was no guarantee by DHS how long this process would take to complete and when we would have the end result of a home for the children. Unfortunately as time went by the unhappiness was building up in our home, and frustration and anger was directed at us for not achieving their goal of independent living.
Things changed for us when Erica had enough and took herself to out of our home and ended up living in respite. She was fed up with us telling her it will happen and nothing was forth coming. Erica was now living in respite and became homeless as we had to make the decision that we couldn’t continue with our home situation due to the constant stress and anger that we had been experiencing.
We were at breaking point and felt we were unable to continue this situation of her living at home without some major disaster happening within our family. Erica was in respite for 4 months and her time was running out, in that time we had no communication from DHS about her situation.
We were eventually taken to look at a house for her by Pinarc her case manager in view of it begin a permanent place for her and her brother, however the size and standard of the house were inadequate for her needs, in that she was in a wheelchair. Plus I don’t see why they have to make do with accommodation that is not suitable for their needs, especially as we always strived to create a comfortable home for them. Just because they have a disability their rights to live in a decent environment should not be denied.
Due to the fact that nothing else eventuated with regards to accommodation we decided that our only solution would be to buy a house for the twins and set them up. The Department agreed to fund the cost of full time carers for them, we searched and found the ideal house for them, which we set up to create that friendly home environment that had been our goal.
The twins are now living independently from us with great success and as they have both matured in different areas, the anger and frustration that they had been feeling has dissipated. They are both enjoying a great social interaction with their carers and we are trying to organize more outings into the community for them, thus to continue to broaden their experiences.
Since this move has occurred we have once again been able to forge a relationship with our children as parents and not just as worn out carers. It is great to be a parent again.
Heidi
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