Estelle is the mother to 32-year-old Daniel, who has high support needs and a severe intellectual disability. Aged 58, Estelle lives in Ryde and works as a piano teacher, giving lessons during the time when Daniel is at work, in a supported employment establishment.

Estelle says she feels a deep sense of despair and panic as the years race past with little hope of her being able to secure independent living accommodation for her son before she and her 65-year-old husband themselves become dependent on support services, or pass away.

The fear of what will happen when she and her husband die, or can no longer care for their son, fills her with dread and motivates her year in and year out to seek a solution to the problem – not just for her own family, but for the hundreds of other carers in a similar position.

While there are support projects which offer respite and future planning, such as the Ageing, Disability and Home Care (ADHC*) Older Carer program, you must be aged over 60 and maintain your primary care role to be eligible. For those under this age or unable to continue as primary carer, it is almost impossible to access funded ‘supported accommodation’.

“There is nowhere in the ‘lucky country’ for its citizens with severe dependent disabilities to live – except staying at home with their parents,” said Estelle.

“Daniel has seen his three younger brothers all stretch their wings and move out and desperately wants to leave home and live with his friends, but with a severe intellectual disability, he cannot just ‘move out’. He needs in-home support, some supervision and help with many of the daily living tasks we all take for granted.

“Around the developed world, governments have come to terms with this issue and have taken responsibility for their citizens with an intellectual disability.  Here in Australia, we trail far behind other first world countries. The solution that our governments are suggesting, that is, that we pass our disabled adult children on to their siblings, is a third world one and unworthy of this wealthy nation,” Estelle said.

“You have probably heard an expectant parent say that he or she has no preference about the gender of the child, as long as the baby is ‘OK’. But what happens to those parents who randomly receive into their hearts and homes the child who is ‘not OK’?”

Estelle said the average Australian believes that things are improving for people with a disability, because they see wheelchair-accessible buildings and transport. “The reality is that waiting lists for early intervention are longer than they have ever been, disability education is in crisis and the costs involved in raising a disabled child are often crippling,” she said.

“Families like ours have been on an ADHC accommodation register for many years – but this is NOT a waiting list for supported accommodation. We have been told by ADHC that there are no waiting lists in NSW anymore.

“We know from the Shadow Minister for Disability Services, Andrew Constance, that last year there were 1700 requests from carers already in crisis seeking supported accommodation for their loved one with a disability. Only 112 places were available.

“And each year about 90 supported accommodation places go to people with a disability who have been in foster care but now, at 18, need to be housed in the community. Other places need to go to people with a disability who have wrongly been placed in prison. The need for accommodation far outstrips availability. People like us are way, way down the list.

“There is a disability system in each state but it is beyond the capacity of the states to deliver what is needed. Currently, the disability system in NSW is boasting extra funding under Stronger Together. But they are meeting the need of only approximately seven per cent of the families that apply for supported accommodation.

“Imagine the outrage in our society if we had an education system or a health system that could meet the needs of only seven per cent of the population. Yet this is what we have in the disability sector and very few people mention it.”

Not one to sit idly on her hands and whinge, Estelle has spent the past six years lobbying various government departments to support a concept plan she and a number of other families in a similar situation have proposed. Their group is called RASAID (Ryde Area Supported Accommodation for Intellectually Disabled). Their dream is to develop a residential cluster housing development in their local area.

“We have seen our people grow up together over decades and witnessed how much they enjoy each other’s company and we want to make an intentional community for them with a pioneering model that will set a precedent for housing people with an intellectual disability and be emulated across the country,” she said.

“Today, after six years of garnering support for our project from politicians (including the past three State Disability Ministers and Deputy Premier), ADHC and Health Department bureaucrats, we are as far from achieving our dream as we ever were, despite having found a suitable building site and having been given repeated assurances and promises that the project would be funded.

“In fact at the last meeting with ADHC earlier this year we were told that if the proposal went ahead, our sons and daughters might not be the ones to benefit anyway – the government would have to allocate any new supported accommodation places to those most in need.

“So we are back at square one after many years of hard work. But it’s not just about bricks and mortar. Some of the families in our group have the ability to borrow funds to build their son or daughter independent accommodation, but they need an assurance from the State Government that if they do this, a recurrent service will be provided to support their child. The Government refuses to give that assurance.

“In some cases families I know have even offered to gift their entire house to ADHC to operate as a group home, on the condition that their child will be supported with a service. In all of these cases, the families have been refused.

“What on earth are we supposed to do? Just hand our children over to the State and walk away? One of my friends in her late 70s was forced to do just that after she became unable to care for her son. She was broken-hearted and her son, who has an intellectual disability, was bewildered, frightened and confused, wanting to know where his mother was.

“In one day he lost his mother and primary carer, his home, his social network, his job – all the stability and comfort he ever had in his life was demolished. They found a place for him 20 kilometres from his home and it is very, very difficult for his elderly mum to visit him there. The trauma and grief this family suffered was horrendous.  It is unconscionable that our society can let this happen.

“Yet this is how the disability system works in Australia: it is dependent on the fact that we love our sons and daughters too much to relinquish them. But in our state last year, 65 families who were pushed to the edge did have to relinquish care of their loved one. Because no gradual transition out of home and into supported accommodation is possible under these crisis circumstances, the wrench is total and it is inhumane.”

Far from being in a better position at the beginning of the 21st Century, Estelle said that she had seen a major decline of services and supports for people with a disability compared to when her son was born three decades ago.

“We could get immediate early intervention services like occupational therapy, physiotherapy, and speech pathology, and there were great special schools for our children to attend. There were accommodation options available, too,” Estelle said.

“Some of these places were highly inappropriate but many were family instigated and family run and were caring village-style residences. They have all been branded with the label of ‘institution’ and closed, but very little has been done to replace them. A report released recently says that for many years people with disabilities found themselves shut in, but now they find themselves shut out - shut out of the way of life the rest of us take for granted.

“My son, Daniel, has a significant disability. He has the cognitive age of a three or four-year-old and needs a lot of assistance with his daily living. Yet he is strong and well, active and happy, a valued member of the team at his workplace, a loyal friend and an integral part of our family. Everything he has achieved over the years has come with great effort and this qualifies him to be called an ‘Aussie Battler’. At the age of 32, he has earned the right to leave home and we have earned the right to retire.

“There are thousands like us and we look to our governments to provide what we must have. We are told that as Australia ages, there are measures in place to accommodate the needs of the changing demographics. We, the carers, are also ageing, and there are no plans in place for our precious sons and daughters - no place for them to go when we are not here.”

* With the merger of several NSW government departments from July 1st, the former Department of Ageing, Disability and Homecare (DADHC) is now known as ADHC (Ageing, Disability and Home Care, Department of Human Services NSW)