TRANSCRIPT
FAMILYANDCOMMUNITYDEVELOPMENTCOMMITTEE
InquiryintosocialinclusionandVictorianswithadisability
Melbourne— 17March 2014
Members
MrsA. Coote / MrD. O’BrienMsB. Halfpenny / MsD. Ryall
MrJ. Madden
Chair: MsD. Ryall
Deputy Chair: MsB. Halfpenny
Staff
Executive Officer: DrJ. BushResearch Officer: MsV. Finn
Administrative Officer: Ms N. Tyler
Witness
MsE. McGarry, chief executive officer, Association for Children with a Disability.
TheDEPUTYCHAIR— I welcome Elizabeth McGarry to our public hearing today. As you are probably aware, I need to go through a few things before we start. As outlined in the guide provided to you by the secretariat, all evidence at this hearing is taken by the committee under the provisions of the Parliamentary Committees Act 2003 and other relevant legislation and attracts parliamentary privilege. Any comments you make outside the hearing do not attract parliamentary privilege. We are recording the proceedings.
We have asked witnesses today whether we can write to them if there is further information you can provide us with or questions that we do not get a chance to ask during the hearing. Do you mind if we write to you and perhaps get a bit more information? They will just be specific questions; they will not be long.
MsMcGARRY— That is okay. I am more than happy with that.
TheDEPUTYCHAIR— The first question I have is around the terms of reference and social inclusion. One aspect is defining what social inclusion actually means. I know from previous hearings that there are differences in what people think that might be. How does your organisation define social inclusion, particularly as it relates to children?
MsMcGARRY— Thanks for the question.
TheDEPUTYCHAIR— Sorry, you were supposed to make your presentation first. I invite you to make a presentation for 15minutes and then the committee members will ask questions. That question is answered in this document, is it?
MsMcGARRY— Yes. That is right. But I am happy to expand on that. My submission is complementary to our written submission. Our association is very privileged to be invited to present to you today, and we appreciate that opportunity.On behalf of the association, which we also call ACD, I would like to begin with a short reflection that we believe is what social inclusion looks like and feels like. It is quite short, and it is called ‘A Great Life’:
I’m part of this world and I have a disability
But I don’t want it to rule my life
I want to find out what I’m good at and do it really well
I want to do stuff with my brothers and sisters
and I want to be happy at school
and I want people to feel OK around me
I want to hang out with friends and do cool stuff
I love my parents but I don’t want to live with them
forever so… I’ll need to get a job
I want to fall in love and maybe have kids
And when it’s all over, I want to be able to say that I
didn’t just have a life
— I had a great life.
Too much to expect? At ACD we do not think so, and we believe that the best way to explore the issues of social inclusion is to begin at this micro level, then identify what barriers inhibit achieving a great life and finally work towards reducing and ultimately eliminating these barriers.
In the 1990s discourse around politics of disablement eventually came to the conclusion that social model theory had reached a dead end. Internationally renowned academic Tom Shakespeare and many others recognised that to progress beyond the unhealthy divide between us and them required a greater acknowledgement of the connectedness between disability and impairment. A person with quadriplegia will require personal care support, and a person with a significant intellectual disability, support with their daily living. Such support is a key element of what the public purse provides, which of course is the rationale for the national disability insurance scheme. The combination of these individualised supports addressing impairment and the creation of an accessible environment in its full sense is what ACD believes constitutes social inclusion.
Children encounter exclusion from a very early age in the playground and in early childhood settings such as childcare, playgroup and kindergarten; however, change is slowly occurring. ACD is pleased to witness an increase in the installation of accessible play equipment in public spaces, often the place where children begin to experience life on the sidelines— the spectator rather than the team player. In relation to child care and kindergarten, formal supports that enable children to participate do exist, but often these programs are underfunded, only supporting those with the highest needs, and even then many children languish on lengthy waiting lists. Kindergarten inclusion support is also significantly underfunded, with extremely narrow eligibility criteria only available to those either with complex medical needs or deemed to be a potential risk to themselves or others.
Support for children at school is available in varying degrees. The traditional view— engaging a teacher’s aide to support students with a disability— is progressing to a more universally inclusive approach, making adjustments to curriculum to accommodate individual learning needs for all children. When implemented with skill and flexibility, the school environment is beginning to achieve active participation and genuine inclusion. The national education partnership agreement, with its focus on supporting students with disability, has provided opportunities to increase teacher knowledge and skill in implementing strategies to increase student learning outcomes and improve participation in the school environment.
The national education standards under the Disability Discrimination Act have supported the inclusion of children in mainstream education settings. Interestingly though, in a recent review of the 2005 standards it was found that amongst other issues the need for wholeofschool communities to understand the nature of disability discrimination was very important. ACD, in its 2014 state budget submission, has recommended the development of an induction kit for school councils, which would include information about disability discrimination, the education standards and school councils’ responsibilities to uphold their intent.
Additionally, ACD believes that working to eliminate bullying and alienation experienced by many students— not just students with a disability— is the responsibility of the whole community and should be championed by school councils as well as educators. Celebrating the achievements of children with a disability is a key component of our work at ACD. We share stories of success wherever and whenever we can. Six examples are included in our written submission to this inquiry: the story of Molly and how her participation and love of basketball progressed to employment as a disability inclusion assistant with Basketball Victoria; Connor, who with the help of a modified wheelchair ski is having fun with family and friends in the Victorian snowfields; Lincoln, who with the help of his family and access to individualised funding was determined to follow his own path into employment and the activities of his choosing rather than attending a disabilityspecific day program; and Becky, out and about on Melbourne’s bike paths with her family.
Other great examples of social inclusion include DialaLunch Gourmet Cafe and Catering Geelong, which is providing opportunities in hospitality for young people with a disability. In the past 10years, 30young people have progressed beyond DialaLunch into open employment. Maroondah City Council has a portable, fully accessible toilet facility developed for use at community events. The Marveloo portable toilet enables people with high support needs to happily participate in local music and cultural festivals, knowing that their personal needs can be addressed with dignity. ACD carries the auspice responsibility for the Changing Places project, which aims to have toilets situated in public spaces that are equipped with a fullsized heightadjustable change table, a hoist and other equipment. We are hoping that the upcoming state budget will include support for this project.
In workshops, information sessions and through individual support, ACD continually encourages families to believe in their children’s potential and to develop healthy expectations for what their children can achieve rather than focusing on or taking on board the negative attitudes of others. Parents are their children’s best cheer squad, and they and their children need to be properly supported. It is a long journey when you are always feeling you are battling against the tide year in, year out. Children’s potential to grow, to learn, to be included and to contribute must be nurtured and should not be dependent on whether they have a disability or not. To stifle such potential is absolutely unacceptable and must be rectified whenever and wherever it occurs. The responsibility to do so lies with all of us— governments, educators, the disability support sector, small businesses, communities, family, friends and neighbours. Thank you.
TheDEPUTYCHAIR— Thank you, MsMcGarry. I see you also have a handout, so maybe we can have a bit of a look at that and then ask questions later in terms of the further definitions of social inclusion. I have not had a chance to look at this.
MsMcGARRY— Sure.
TheDEPUTYCHAIR— My other questions were around education— primary, secondary and I guess tertiary education. Have the funding cuts in the area of education had any effect on the programs, the supports and the potentials for children with disabilities? I am thinking of within the classroom, but also programs such as VCAL and TAFE. I am not sure whether there are more children who have a disability who go into those streams or not, but if that is the case, has this had a detrimental effect on their future?
MsMcGARRY— Sure. If I could just start with the TAFE sector: when there were cuts to the TAFE sector we were very concerned about how that might impact on young people moving out of secondary school. We requested that families let us know whether they felt that their children’s progression would be impacted by that.
Surprisingly, we actually did not have many people who came to us with issues around it. And when we did explore with some of the special development schools how that impacted on their progression for children it did not seem to be so much of an issue, because it ended up being the way in which courses were changed and adjusted. So it was surprising for us.It may have been an issue for people that we have not been aware of, who have not come to us, but it has actually made it difficult to advocate for changes without the evidence in relation to that.
TheDEPUTYCHAIR— In terms of the special schools you were talking about various changes to the programs. Have they rearranged things?
MsMcGARRY— That is right. The transition from special schools into different TAFE courses, particularly around even things like English proficiency, as well as hospitality and those opportunities; they were the ones I was thinking about when we approached special schools.
TheDEPUTYCHAIR— My other question I guess was in terms of respite care, first of all with the parents, with children and what the experience has been in terms of that. Where is that at the moment? I know, for example, in my area in the northern suburbs there was no respite care; there are now a few beds. But in terms of that whole issue, where do you see things as being now and where should they be?
MsMcGARRY— Yes, that is a massive issue, but it is part of a bigger story. We have found that with changes to individualised funding, which we really support because of the flexibility that it develops, one of the unintended consequences has been that service providers have not been able to be as agile in supporting families and children, particularly where there is an individual or an episodic situation where a quick response is required. To access individualised support through ISPs— individualised support packages— you actually need to go through a whole process of assessment and developing a plan and then waiting for the resources to be allocated to implement that plan.
If you have issues that have happened quickly, you need to have a quick, agile response, and not to wait 18months to two years for that support to be available. So at ACD we have always advocated in recent years that individual support packages are very important, but we do not believe in risking the agility and flexibility of flexible support packages and shortterm packages that sit with service providers and that can respond to the needs of families. That has reduced to a significant degree, so then service providers are not in a position to respond quickly and to be able to say, ‘Okay, you really need some help right now. Here is the opportunity for us to provide some respite support for you’.
TheDEPUTYCHAIR— Okay. So it has been given to the family rather than staying with the provider, therefore you need to go through all this assessment— is that what you mean?
MsMcGARRY— Yes, that is right. It is allocated to the family, but also the resources to support it have grown in the area of individual support packages but they are not giving service providers this ability to quickly respond.
TheDEPUTYCHAIR— So it is an individual package for a family.
MsMcGARRY— Or a person with a disability.
TheDEPUTYCHAIR— And the assessment procedure is long and drawn out, whereas before there was more money available to a provider that could then use that as they saw fit.
MsMcGARRY— That is right.
TheDEPUTYCHAIR— Thank you.
MsMcGARRY— But we are not for 1minute suggesting that we should revert to block funding; it is about fixing the unintended consequence.
TheDEPUTYCHAIR— Sure. Thank you.
MrsCOOTE— Thank you very much indeed, MsMcGarry, for your really comprehensive report. Could I drill down into Changing Places, because I think it is a really important thing. Could you just tell us, as a committee, what it means for people with a disability to have this facility available elsewhere? For example, my understanding is that they cannot travel large distances because they need personal care and it is just not available, so that therefore limits the whole range of social inclusion. Could you expand upon that and give us some indication of what you see into the future.
MsMcGARRY— Yes, and I would like to add to that, that it profoundly impacts on people with a disability but also their family carers. We are really aware, from the number of families who have spoken to us, that once you have a child older than a toddler, and so therefore beyond using parent rooms, if you need to use a hoist or use a table to change them, that is not available. You are really restricted by the type of continence products you have got and also how far you can travel. It might be that you cannot go more than 2hours from home.
We have families talking about the fact that they might take shifts so that one family member might come into the city with the person with a disability and then halfway through they will go home and another one will come in, even if it is attending different functions, festivals or sporting events. It really restricts the inclusion for that person but also for the whole family to do things. So many families say that they have just given up.
The whole idea of having this barrier, which so many people feel is already addressed by accessible or disabled toilets, means that you are incredibly restricted by what you can do. It is very difficult to use public toilet floors. I have been in a situation in a pub in Geelong supporting someone who had an unexpected need to go to the toilet, and we were on the floor in the disabled toilet space. This person was a significant size. There needed to be three of us in a small space; it was just a nightmare and so undignified.
We have really recognised, along with Maroondah council, the need to do something about this. Initially it was driven by the Metro access worker and other staff at Maroondah council. We have linked in with Changing Places in the UK, so this is a proven model, and we are hoping to raise awareness initially of the need for broader, more comprehensive support, with Changing Places being the solution to that.
We hope, through this project, to raise awareness to develop a map to identify where Changing Places toilets are located, and we hope to link in with the phone apps that are currently available for that.
Eventually we would like to see the building standards changed, so we are looking at that as well, but we are also raising awareness with planners and architects, and wanting to have visibility at trade shows and conferences to make a significant change to eliminate one of the barriers to social inclusion.
It really takes us back to what I was saying earlier: it is not just about the physical issues that people face, it is also about the social barriers, so it is the combination that we need to work on.
MrsCOOTE— In the handout you have given us today there is a photograph of the Marveloo. What is the cost of that?
MsMcGARRY— I would need to take that on notice and let you know.
MrsCOOTE— Could you let us know? It is obviously a portable.