Rachel Siewert (WA, Australian Greens) Share this | Link to this | Hansard source

I rise tonight to talk about people living with disabilities. In WA we have a wonderful program called the Politician Adoption Scheme, which is coordinated and run by the Developmental Disability Council of WA. This is a scheme under which a politician is adopted by a person living with a disability and their family. The aim is to support members of parliament to represent and advocate for the rights and needs of people whose lives are affected by disability within their electorate by providing a more personal insight into the impact of disability on people’s lives. Through personal communication and direct experience, the politician is better able to promote awareness of the rights and needs of people with disabilities and their family carers and to reinforce the community’s expectation that its elected governments will meet these needs.

Since the Politician Adoption Scheme was launched in Western Australia in March 1998 over 31 state and federal politicians, and around 40 politicians from across the political spectrum around the nation, have agreed to be adopted by a person with a disability within their electorate. This is to inform and strengthen their advocacy on issues affecting the lives of their constituents who have disabilities. I know that a number of senators from Western Australia, such as Senators Ellison, Webber and Sterle—and perhaps others—have been adopted by families in Western Australia.

The Politician Adoption Scheme builds on the existing role of politicians to represent and advocate for the interests of the people they have been elected to represent. The Politician Adoption Scheme provides an opportunity for politicians to gain a more personal understanding of the issues and hardships facing people with disabilities, both within their own electorates and in the broader community.

The adopting person or family undertakes to support their parliamentary representative to advocate on their behalf and on behalf of other people with disabilities by providing information on their needs and reporting on progress towards meeting their needs. This is done through personal communication and involvement in their lives, providing opportunities for firsthand experience of the issues that impact on their rights and needs and by raising issues that are impacting on the quality of life of people with disabilities.

The adopted politician undertakes to use the information and insights gained through his or her adoption to advocate for policies and practices that will enable people with disabilities and their family carers to achieve a reasonable quality of life and access to the opportunities available to other community members to participate in and contribute to the life of their communities.

In August this year, at an adoption ceremony in Perth, I was lucky enough to be adopted by Luis Casella and his family. I would like to quote from the speech that Luis’s mum, Livia Casella, gave at the ceremony, because I think it makes some very important points:

My son, Luis, was born normal and then had an allergic reaction to the triple antigen injection at the age of four months. Because of this he became severely physically and mentally handicapped and an epileptic.

As you can imagine this has had an enormous impact on the family: Luis’ complete dependency on others; the divorce of my husband and myself when Luis was just 4; my life-threatening health issues; the extra burden on my ageing mother; and the irreparable scars on my daughter’s life. None of these stopped me from loving Luis or providing for him for almost 18 years.

When a son turns 18, most parents would celebrate because it means a darling child is now independent—able to drive, to work, to look after himself. But for parents of the disabled, when their child turns 18, he becomes even more dependant on his parents. Because of the crisis in the Disability Service Sector, when a disabled child turns 18 all of the services which were helping him are now discontinued and the parents have to start again.

For Luis, whatever was allocated to him—the respite in and out of home, therapists, equipment, hospital, even his school with a superb interactive personal program which has had a fantastic result in Luis—is all taken away at the end of this year.

I now have to apply for all new services, most of which do not even compare to the past, and with all of them there is a waiting list to get over first. I have only a few months left with all my time and energy that I have left being spent in trying to achieve some support for Luis after this year.

It seems so wrong that at the end of formal schooling, all support is cut from under a child who cannot possibly look after himself, and this load is put on the parent or parents just when even more services are required. I feel that my own life is now ending and, to a lesser extent, that of my family. We should not be left begging and be worse off but should have what we rightly deserve—a brighter future.

It is my sincere hope that Senator Siewert will be able to impress on the Federal Government some of the disability issues of funding and services and the vital need to support the disabled and their families. I am hoping she will be able to instil more awareness into the government of the real day-to-day needs of the disabled, their carers, and the carers’ families.

Disabled people like Luis deserve respect, love and support and a voice in the federal and WA governments. Through caring politicians such as Senator Siewert and the media, the public has to be made more aware of the problems. Also, I think the ministerial portfolio of disability must be given the status it deserves so that this portfolio can achieve the best for the disabled. It is morally wrong to delay services, underfund, and ignore a community who is totally dependent on the goodwill and help of others because they are unable to do it for themselves.

Luis turns 18 next week on 14 September and, as Livia so clearly points out, that means the end of the special school program he has been in, and facilities that she and Luis rely on will cease. That is unlike the situation of his peers. My son will also be leaving school at the end of this year and he has the full range of opportunities to consider for his future: study at uni or TAFE, a gap year, getting a job, on-the-job training and learning to drive—much to his mother’s distress! Luis does not have these opportunities. Because of his profound disabilities, Luis’s postschool options are very limited. His only option is the Alternatives to Employment program’s recreation and leisure activities.

Luis has been assessed by Post School Options and the funding he has been allocated will buy him a maximum of three days of alternatives to employment activities with an agency as opposed to the five days he now has in his excellent school. This presents real problems for students with high support needs and their families. After they leave school they experience a loss of continuity in daily instruction, support and learning.

For the past two years Luis has been a part of a new program at his school called the Intensive Interaction program, aimed at developing communications skills. Just recently, Luis has had some positive results from this program. For the first time in his life, as a direct result of this program, Luis’s communication skills have improved. Luis’s mother has been told that these results will probably be lost if he finishes school at the end of this year. Professional advice suggests that he needs at least another year or two to consolidate the skills that he has learned.

While other young people are excited about leaving school and keen to get to uni or TAFE to continue their education, Luis and other young people with disabilities are forced to stop their education at age 18. Why, may I ask, should they have to stop learning, to stop their skill development? And why should the milestones of their able-bodied peers be placed on people living with disabilities, who do not learn at the same rates as their able-bodied peers? Why stop at 18 for people living with disabilities? Another year or two at school would provide Luis with an opportunity to learn and to consolidate his communication skills, which would definitely enable him to have a better quality of life.

In some circumstances in Western Australia, young people with disabilities can apply to spend an extra year or two at school. But, of course, you have to apply. Unfortunately, Ms Casella’s application has been put on hold while the central office develops guidelines for assessing how people apply for an additional year at school. If Luis does not get that additional time at school, Ms Casella has to enter into a series of funding rounds to make further applications for further places. There is a competition for places; it is like a race to the bottom to see who is the worst and is therefore able to get funding. In the meantime, there will be more waiting lists while Luis’s education goes backwards.