Devonport public meeting, 3 November 1999 - notes
The participants at the Devonport community meeting made children's health and disability support their focus. Discussion detailed the various ancillary health and support services available to schools. Special education was also an important topic in this meeting.
Disability
'Giant Steps is an autism-specific centre that is registered as a school under State legislation. It is a private, non-Catholic Centre funded principally by contract through the State Government Education Department. The project has been running for 7 years and the centre has been here for 4 years. It is located in the Deloraine community.
'The project was established by groups of parents who worked together over a period of time. We receive a small amount of money from the Commonwealth government and parents pay fees of $4,500 each year. We take 15 full-time students. These students are all moderate to severe on the autism spectrum. In principle the centre is open to children from all over Tasmania, though in practice it is only accessible to children from Northern Tasmania. This reflects what is reasonable in terms of daily travel. Parents are responsible for the transportation of their children. The parents get a small, State government allowance that does not cover the transport costs.
'Attracting and retaining specialists in regional areas such as Deloraine is particularly difficult. This includes occupational therapists and speech pathologists. Tasmania is specifically disadvantaged in this area, as it has no course of training in either of these fields.
'There is an educational and a therapeutic program at Giant Steps. Originally we wanted to provide a transition program into mainstream education. Yet our goals have changed because more and more we are seeing children who will not fit into the mainstream systems. At Giant Steps every child has an individualised program. We are engaged in some integration programs with schools but this is a complex process. There has been some contact with schools but it is on the basis that the child is fully supported by someone from Giant Steps and that the classroom teacher does not have to contribute anything to the child's program.'
'If children are bypassing a local special school, or there is a special school within a 50 kilometre radius of the home, then the family of a child at Giant Steps will not be eligible for the Assistance for Isolated Children funds. The Giant Steps program is not considered to be a more appropriate school when there are special schools closer by. This means that there are no funding subsidies.'
Case study: disability
'To give the subject a personal perspective, I would like to talk about my son. As farmers we cannot move from where we are. When my son was 2 he was involved with early special education. They didn't know what to do with him. They kept pushing him up a year and then they would ring me to come and take him home early. Later my son was at the local special school but they could not cope with him. He is now at Giant Steps.
'Transport has been a huge issue for our family. When my child started Giant Steps I drove him to Deloraine each day for a year with my younger child. Then when my younger child started school it was too hard to continue with the travel for the 2 of them. There is no school bus for her and I could not get to Deloraine. I withdrew my son and put him back at the special school but they could not cope with him. When we wanted to go back to Giant Steps the Government told us to get in a car pool. Disability Services does not do transport. The Education Department was not willing to help us with transport. It became a pitched battle for us to get him into the only program that had made a difference for him and for us. We put him in respite service for 6 weeks. They soon realised that he was not the kind of kid who could be transported by car pool and they gave us some money. There was no understanding that he has a right to specialist education.
'Now Giant Steps has become a new nightmare for us. It is constantly threatened with closure so we must be involved in fundraising because if it closes what have we got? The pressure of being at Giant Steps has been huge this year. We want something that is secure. The special school is secure but it cannot offer him what he needs. They don't want kids like my kid who have a profound disability and challenging behaviours. He will never get speech therapy in this region. He hits because he can't communicate. But where is the speech therapy to change this to teach him to sign or to communicate?
'We had a speech therapist last year but every obstacle was put in her way to stop her delivering a service to children like mine. She ended up doing generalist consultative work. We also know that poor muscle tone can lead to aggression. But there is no physiotherapy for my child. Now the only way that my son gets some physiotherapy is because I get into the pool with him to work on his gross motor skills.
'These kids are now treated like the leftovers of this community. Firstly he is not properly educated and then he is not provided for. There are no facilities for children such as mine. He will not be able to go into a group home. He doesn't fit into any of the special education programs and yet we must live daily with the threat of closure of Giant Steps.
'In July Giant Steps had to reduce the program because they did not have enough funding to run the intensive program. This had a distressing result for my son. He is now not progressing; he is treading water. If this continues he will regress because the staff will not stay in positions where their jobs are not secure. If kids like mine don't fit the funding quota then I think we should change the rules. Children who have challenging behaviours should be given priority because it will be cost effective in the long run. He will cost a lot less in the future if he gets speech therapy now and learns to communicate now.
'In many ways children with autism have the most complex needs, are least understood and require the most intensive resources. Respite care becomes a huge issue too because respite workers don't know what to do and family based care and residential care organisations make decisions that they don't want to care for kids with autism. They find them too difficult. It is actually a secondary level of discriminatory behaviour. In a recreation sense there are very few outlets for children with needs like my son. I keep being told that he is not compatible with the group and I'm talking about groups of children with special needs. There is just nowhere for him to go.'
Funding for disability services
'We need to have links from the policy level through to the service level. There is no communication even across services. We need to use our scarce resources and work together. I'd say that nearly every person in this room struggles with funding for their different programs. At the policy level they need to be able to allow for flexibility so that we can work together to provide the best services. Trying to get funding that extends beyond one year where you can do some planning is almost unheard of. We spend so much of our energy just getting the limited funding that we have.'
'It was far more difficult to get funding from the Health Department than it was from the Education Department for Giant Steps. We have dual enrolment where a child can be enrolled in a mainstream school and at a special school. This is why we are better off being funded through the Education Department than the Health Department.
'In July we had to cut 30% of our staff. We lost 2 staff members and all staff took a cut in hours and salary. We did this to save the service. The bulk of our staff work with the children 4 days a week rather than 5. The 2 full time jobs that went were both special therapy positions. One of the positions was the music therapist. This has made a huge change to the quality of the program.'
Sexual health
'There is an overwhelming need for resources right across this region. One of the problems that I find that there are funding restraints on the teachers so that they can't be released to do the sexual health training. This occurs for 2 reasons. One is that the schools don't have the dollars for this training and the other reason is that it is not considered to be a priority. We ran a training session here a while ago and only one teacher came to it.'
'The extent to which teachers are released is discretional and based on the decision made by the principal. There is also limited money for this kind of training and time release.'
'Some of our work has had some good outcomes, particularly in the media reporting. This has come out of some of our research.'
Youth suicide
'There are still young men committing suicide in this region. The anxiety rates are very high for children in schools and I mean primary schools. By the time that they get to secondary schools these kids are put on a depression register.'
'The resilience program to deal with youth suicide has 2 components. One is called 'Parents' and the other is called 'Teenagers'. It is about developing understanding between parents and teenagers and getting each group to understand the pressures that the other is under. Learning what the emotions mean and learning about how to cope with them without copping out. It has been quite successful in Queensland. This is funded by the Education Department.
'There are problems though with the funding for youth programs such as this one. There are 5 different areas where you could get youth funding for projects and it is very political and there is no cohesion, no overall vision and coherence at a policy level. Therefore there are buckets of money everywhere and their distribution is not coordinated at the program level.'
'We currently don't have phones or computers or cars. We use all of our own resources. In rural communities such as this one you need these resources because the kids don't have access to so many resources and I mean computer and information technology communications.'
Gay and lesbian and transgender issues
'We have not been able to implement the core of the "Working it Out" program. That is not because the schools are not willing. It has more to do with the need for further research and then taking it on at the school level. It has actually fallen into a heap because we have not been able to attract the funds to develop the project further.
'The work and research that we have done so far now sits on a shelf. We currently have a submission in for funding and we are waiting for the outcome.
'We have a new anti-discrimination position in Tasmania and this is the greatest opportunity that gay, lesbian and transgender young people have to protect their human rights.'
Challenging behaviours
'There have been many young people who have behaviour problems and now they have become parents. These young parents have not had access to resources while they were children and now the cycle is repeating itself with their children. As adults they do not have access to the specialised counselling services that they need. The children of these people have compounded problems. They have behavioural and learning problems and they are unable to receive any support at home.
'These kids need some support when they are young at pre-school level at about the age of 3. Another problem here is transport. There is no money to transport these children to the support services. The families are on low incomes and they don't have the petrol money to take the child to the service. There is no money also for transport in order to do the outreach work.'
Assessment services
'There has been a diminishing of services. The psychologist has left and the speech pathologist is past retirement age though she has stayed on. We had problems getting a paediatric speech therapist. On the nursing side of things there are no longer school health checks, there is only a hearing and sight test. If you are not there on the day you miss out. In terms of picking up the problem earlier, it is much more difficult.'
'Support services are provided based on the number of children of a certain age and on the birth rate. As there is a declining birth rate, so too have the services declined.'
'The problem here in Devonport is that our resources are so thin. If we were to go to the West Coast to do outreach services, we would take a whole lot of time travelling, and of course this would take away the direct service provision in Devonport. Someone always misses out.
'If you lived in Hobart or Launceston you could access specialist services like speech pathologists both through the government and the private system and the Education Department would pay. We don't have those options here. More work is being pushed across to generic services.
'In the North West we are trying to develop an Allied Health Service. We are trying to put all the health services together under one management structure. That would join community health, hospital health positions and disability services. We are working on this. We might then be able to package positions and sell hours to programs like Giant Steps. This would mean that that we could have full-time positions and these positions could be allocated across the sectors where they are needed.'
Case study: technology for disability support
'To draw your attention to one young woman with an intellectual disability, she is now 18 years old but has only had a communicator for the last year. She is now able to drive her own wheelchair and she is learning to read and write. But this has taken so long. Why didn't she have access to these resources earlier? If she had these resources she would have probably been working by now. As it is, she will probably be a burden on the state for the rest of her life.'
Deteriorating services
'The real worry for many disability services now is that they will be downgraded to the point that they will be babysitting services and the parents will withdraw the children and the service will close. This is also occurring with post-schooling for adults with disabilities. The cost for post-schooling disability services requires a good deal, if not all of the pension, and yet it is little more than babysitting. Yet in the larger urban areas they have programs from 9 until 3.'
'As a specialist service, we have been asked to justify our work in terms of outcomes. This is a problem because we are better off taking children with moderate intellectual disabilities in a group of 5 rather than taking 1 child with a severe disability on his/her own for whom progress would be really slow. The other side of this is that the children with very mild disabilities are missing out because there are fewer services and we have to prioritise our work.
'What happens then is that you end up with a bigger group of people who are going to get nowhere. We are not going to be able to pick up the problems early either and this means that the problems are going to be entrenched. This is not effective in terms of resources or outcomes.'
Last updated 2 December 2001.
