Intellectual Disability Forum

Today I travelled to the southernmost part of the Lake Macquarie Electorate to attend an Intellectual Disability Forum hosted by the NSW Council for Intellectual Disability.

The forum was structured to hear from the political representatives but more importantly to hear from the people who advocate and care for the intellectually disabled.

It was a heart wrenching experience to hear about the lives of the carers in their quest to get support and ensure the care of their children into the future.

One mum, in her late 70s still caring for her almost 50 year old daughter, shared her frustration in trying to find suitable accommodation for her daughter. She recognised she was tired, physically tired, with not as much enthusiasm or energy any more, she said she was just ‘worn out’, and was well aware that her capacity to continue to cope was diminishing. You have to wonder what sort of system allows this to happen. Where is the compassion, where is the appreciation and gratitude for having cared for so long? Where is the planning to support the life time of needs of the children and their carers?

Another mum told of how the only reason her son found accommodation was because she was the most neurotic and closest to a breakdown of the parents all vying for the place!

All the parents spoke of having to fight for a place for their child to live. It shouldn’t be a battle. What became apparent is that it is hard to keep fighting. All the parents spoke of the exhaustion they live with.

A dad in his late 60s spoke about the 3 hours travelling he has to do each day to take his son to a day care facility. How they have lost their case worker and the desperate need to get transport assistance. He spoke about how he and his wife use to receive 4 weeks of respite a year which has gradually been cut back to one. This family have also had their paperwork repeatedly lost which has added to the frustration of trying to get through the system to gain some support for the care of their son.

Another dad spoke of the struggles with the education system. Having to fight to get his children accepted into mainstream education, something that was the norm in England where they had lived prior to returning to Australia. Whilst it was acknowledged that there was adequate support at present within the school system the real stumbling block for the children was challenging the mindset of the ‘establishment’. A suggestion was raised to develop a ‘one stop shop’ of professionals to enable the multitude of support services to be integrated in a way where the pressure was taken off the parents to negotiate the bureaucracy.

There was discussion about the Governments Welfare to Work program and how increasingly employment agencies were not putting intellectually disabled people forward for placements or providing the support needed to assist in the transition into the work environment. This has created higher unemployment and underemployment. One jobseeker stated the ‘Agencies’ were useless as she had tried to get work for over 12 months.

At the end of the forum it had become glaringly obvious that there was little in the way of long term planning happening to support the intellectually disabled community and their carers. This is a quiet community, because there is no energy to shout, muted by a system that doesn’t listen. The voices of the advocates cry out in frustration, looking for lifetime solutions to a lifetime of disability and a generation of caring.

The Greens policies on Disability Support Services, Health, Housing and Education all address the needs that were expressed in the forum. The Greens foundation principles of social equity ensure that all members of society have access to the services they need to lead fulfilling lives