Files that went out to politicians

 

 

  The Right to Shine     Five stories from parents of children with autism about the failure of Government and the Education system to provide for their children.   And six changes that must be made so our children can truly “Shine”

Background

This collection of short stories has been compiled by five members of HAGS – Happy Autism Group Support. HAGS is a support group for people who live in the Dandenongs  and who care for children and young people who have autism.

HAGS has 15 members, whose children range in age from 3 to 15, all at different stages of their education, and learning in  variety of settings.

 A frequent topic of discussion at HAGS meeting is how frustrating it is to ensure our children get access to the education they need.  There are a large number of issues that relate to this, and the purpose of this collection is to highlight the challenges we face and the problems in the education system that must be fixed as a matter of urgency

We ask you, as a Member of Parliament standing for re-election, what is your commitment to the following”-

1. A significant increase in new funding to the  Department of Education and Early Childhood Development to be directed to Integration funding in the Program for Children with Disabilities (PSD)
2. An immediate  change to the eligibility criteria in the PSD  based on needs rather than the supply of funds, and the removal of criteria that exclude children with aspergers who have significant behavioural and learning challenges
3. An increase in the level of specialist school-based support services including Occupational Therapy, Speech Therapy and Psychological services so they are   available to children on the autism spectrum on a regular and ongoing basis. This may include allocating new funds to schools, to secure this through private providers
4. Removal of the eligibility criteria for entry into the new Ferntree Gully Autism school to include those with autism who have IQs above 70.
5. Provision of parity in the level of integration funding between the public sector and independent schools.
6. Provision of access to appropriate before and after school care at primary and secondary level through school programs or flexible child care funding packages to parents of children.

Please give our children the level of support in schools they need and have the right to!

 

 

 

From Bec

My son is 8 years old and has autism. He is now in grade 2 of a mainstream school which has a great integration program and a commitment to supporting children like my son. He was diagnosed when he was 3 ½ years old, and attended a specialist kinder before starting school. Unfortunately the kinder did not believe he would need integration support at school, and it was not until Term 3 of prep that he received level three funding under the Program for Students with Disabilities.

 His behaviours at school include frequently absconding (once nearly being hit by a bus), refusal to get into and stay in classrooms, hitting, kicking and punching  teachers and students, climbing fences and trees to escape, screaming, and  hiding in the school yard.  He has no concept of danger or impulse control, and is highly anxious. It is nearly impossible to engage him in learning in the classroom and he cannot read or write.

Before he received aide funding in prep, the school used it own funds to employ an aide for some of the time. The other time I would have to pick him up at 12 noon. In prep and grade 1 he only attended school 4 mornings a week as there was insufficient aide funding. Sometimes, even with aide support, his behaviour was so extreme I would be asked to collect him. The school has been very supportive of me and my son, but he simply can’t be managed without a full time aide.

The school considered applying for an increase in funding but is fearful of actually losing funding. Other parents in my autism support group have told me that, increasingly, principals are reluctant to ‘rock the boat“ with the Regional office.

I contacted special schools and Wantirna Heights autism school and was told that because his IQ was over 70 he was ineligible to attend.

My son has not had regular speech therapy, occupational therapy or psychology services at school. Because he does not have full time aide support at school, and I may be called at any time, I have been unable to even consider paid employment. This means we can’t afford private specialist services. So the Education Department isn’t providing them, and I don’t have the money to pay for them.

The first two years of my son’s primary schooling have been the worst of my life. I now suffer stress related physical illnesses including heart problems.

The key issues this story raises are –   The program for Students with Disabilities does not provide realistic levels of funding for children with disabilities. The criteria for Specialist Autism schools for an IQ under 70 excludes some children whose behaviours may be too extreme for mainstream school There is limited or no access in many schools to regular and ongoing occupational therapy, speech therapy or psychology services Committing to paid employment is impossible for parents who may be called at any time to collect their child because the school is not given the resources it needs to manage. Parents are faced with massive financial burdens in addition to the other challenges that are part of having a child with a disability. Â

Raising my son is so hard. I just wish we could get the services he needs. There’s something very wrong with the whole system. It’s not fair on my son, or principals, or teachers or the other kids in the school.

From Sandie

My son was diagnosed with Aspergers Syndrome last year in 2009, shortly after starting Prep at a small mainstream school.

He is highly sensory-seeking and not able to sit still for more than a few minutes at a time, his sensory defensiveness means he finds groups of people distressing. He is not able to stay on task – personally or academically, and is distracted from simple tasks at school including drinking water or eating his lunch. His low muscle tone means he cannot play sport will or hold a pencil properly. He does not register personal body sensations such as food on his face or body temperature. He needs adult help to identify the likely cause of physical discomfort and distress.

A total IQ score cannot be calculated for him because, like many people on the spectrum, he is brilliant in some areas and lower in others. Despite this, he does not qualify for a specialist school, yet he also does not qualify for aide support in a mainstream school. He has a ‘severe pragmatic speech disorder’, yet his pragmatic speech score (which is ‘severe’ and well below peer level) was the criterion that disqualified him from aide funding in 2009.

Six months after spending substantial personal funds on limited occupational, psychological, and speech therapy, he qualified for FACHSIA funding when the qualifying age limit was extended from six to seven years. Since then this government-funded therapy has seen my son’s speech improve, he is learning to write, and he is learning social skills through psychology to enable him to integrate better at school and overcome his anxiety. Next week when he turns seven we will lose access to this funding; which we have benefited from for just over a year, and we cannot afford to continue this level of support to him as a single income family.

I resigned from my position with the Federal Government in January 2010 (who denied me leave without pay to care for my son) to support him at school in the absence of an aide. I have worked closely with the school to implement a range of physical and visual supports to aid him in staying on task and to keep him as regulated as possible. His unregulated behaviour is not only detrimental to his learning capability, but is also disruptive to his classmates. The school does its best to meet my requests, however my son is one of twenty students in the class, each with their own unique needs. The resources of the school system are extremely stretched and without an aide for him the school has limited capacity to deal with extreme behaviours, such as him running away when he is confused or anxious.

I will remain unable to return to work as I will continue to perform proxy-aide assistance to him at school. In addition he can not attend before or after school care due to his sensory seeking and sensory overload tendencies.

My son falls through the gaps – he does not qualify for an aide in a mainstream school, he is unlikely to be accepted into a private school because he does not have aide funding (and would lower academic scores on the MySchool website), and he does not meet the IQ requirements for acceptance to a specialist school that provide supportive therapies.

The key issues this story raises are – The Department of Education through the limited and inflexible eligibility criteria of the Program for Students with Disabilities, fails to fund most children with Aspergers, despite their high needs and behaviours. Children with Aspergers are consistently “falling through the gaps”. Access to school- based regular and ongoing occupational therapy, speech therapy or psychology services is limited or non-existent, despite the enormous benefits to enhancing behaviours and learning. Specialised government-funded training for teachers on visual aides and dealing with behaviours in the school should be compulsory. Training aides is irrelevant to the many Asperger children who do not qualify for aides. In order to provide assistance to their children, parents, particularly mothers, are increasingly unable to commit to paid work.   Â

 

 

From Sarah

My name is Sarah O’Connor and I have an 11 year old daughter – Beth – who has autism. Beth attends a mainstream primary school at present and is in grade 5. She has level 4 funding and by and large it has been excellent.  I have however always had to source any specialist services that we have used. These include speech therapy, occupational therapy and social skills groups. This often costs me somewhere around the $250 a fortnight range depending on what therapies we are doing at the time or what we can afford at the time. A social skills group that Beth attended cost me $700 for 10 sessions, to be paid in advance. I have to travel 45 minutes each way to attend these services once a fortnight which means that Beth has to miss a day of school each fortnight.

 I believe that therapies like these could be arranged in schools. This would allow the children to attend school on a more regular basis and the therapists being able to observe the children in the school setting, rather than making suggestions to the parents to then relay to the teachers and aides, making it difficult to communicate what is required at times.

Beth has enjoyed her primary school years but as she gets older it is becoming more and more obvious that she is not like her peers. She has recently begun menstruating and has no problem calling out in class if she feels that she needs to change her pad. Beth is emotionally and behaviourally younger than my 5 year old in some things that she does. I don’t believe that she would cope at all in a mainstream High School setting. She has no stranger danger and no traffic awareness either.

I read with interest that an Autism specific high school would be opening up in Ferntree Gully. When I spoke with the principal of the existing autism primary school she told me that the children have to have an IQ level of under 70. Also, the year they are opening is 2012. This cuts us out on both levels as Beth would be in grade 6 in a special school. They are only taking up to year 7 in 2012. Also her IQ is over 70. I would be happy for Beth to go until she is in year 11 then see what happens then if age was the only issue. I believe that there has been false advertising about this high school as newspapers are advertising only that it is an autism specific school. Nowhere did it mention that the IQ level had to be under 70. Children with a low IQ already qualify for special schools so they have 3 options. It seems that my child has only 1.

I believe that the Education Department needs to realise that the stereotypical autistic child of these days is the higher functioning child, that often they do have an IQ of over 70. I know of children with a lower IQ who could manage better socially and behaviourally than my Beth. Where are these children to go? In my case, not only do I have the issue of bullying to worry about, I also have the issue of sexual abuse as my child is a very gullible girl. Already we have had to deal with her lifting her top up when kids have thought it funny to ‘get her’ to do things. God forbid what could happen with teenagers. There has been a lot to say about parents being able to send their children to the same one as their siblings. But shouldn’t parents have the same right to send their children to an autism specific school if they choose? I have the right to send my child to get an education and have this education in a setting that I feel is a safe environment. Surely that is my right as a parent and my daughter’s right as a human being.  I want high school to be a positive experience for both of us and I don’t believe it will be with the education system as it is currently.

The key issues this story raises are –   The new Autism School to be opened in 2012 in Ferntree Gully excludes many children with autism with an IQ over 70. Parents are denied choice and a child’s right to a specialist setting is ignored. The Department of Education consistently fails to provide the range of educational options that are needed to meet the needs of children with disabilities There is limited or no access in many schools to regular and ongoing occupational therapy, speech therapy or psychology services Parents are faced with the massive financial burden of accessing non- school based specialist services in addition to the other challenges that are part of having a child with a disability Â

 

 

 

 

 

 

 

From Margaret

I have a 14 year old son with Asperger’s Syndrome, or an Autistic Spectrum Disorder, as it is now known. He began his primary education at Haileybury, where he lasted 2 and a 1/2 terms as they found him difficult and did not want him at their school. He was fortunate to be accepted at the Currajong School, a private special school, which catered for his needs, but at the cost of enormous travel times, as we had to drive to East Malvern from Narre Warren East in peak hour for 3 and a half years. After a great deal of research, he then transferred to Belgrave Heights Christian School, where he has been very well supported. In saying that, there are many things that have either been very difficult to obtain, or have been obtained at great cost to us, both financial and in time. We have effectively paid double fees to obtain additional integration support, and have paid for many therapies over the years, including speech therapy, occupational therapy, psychology services, paediatricians and some alternative ones as well which are always expensive.  My son is very fortunate that we have the resources and the ability to chase and ferret out services to help him, but this is not the case for many families.

When my son was younger and I needed a mainstream school for him to transition to, I researched many, many schools within sensible driving distance of where we live, both government and private. I was told at that time that he was unlikely to get any funding at a government school as he had Asperger’s, although the amount he would have got in the government system had he been eligible would have been up to 10 times what he eventually got in the private system, so my only choice was private.

He is now in Year 9, a challenging year for any parent, and in our case compounded by his Asperger’s. Although I have nothing but praise for his school, the services offered within our education system fall very short of his needs. He thinks very differently and he learns very differently from the average student, and this produces challenges on many fronts. With VCE only another year away, his needs seem to be increasing if he is to achieve this milestone. He is a bright boy, but his learning style often means he misses important information.

Special needs education needs a great deal of overhauling to bring it anywhere near to meeting the needs of these children. Asperger’s and autism are areas that often miss out due to the ‘invisible’ nature of their disabilities. Not only do we need to have portable funding so that parents can make appropriate choices for their children’s education, but the system needs to make enormous changes to cater for the needs of these children to give them access to the same education that is offered to everyone else.

I hope this information and my personal experience, although necessarily brief, gives you some insight into the plight of families with a child with special needs, particularly those on the Autistic Spectrum, and that you will be able to advocate on our behalf to bring changes to a very flawed system, including the advent of portable funding.

The key issues this story raises are –   The lower levels of funding of eligible children in the independent school sector. A lack of portability in funding between schools (public or private). The incapacity of most mainstream settings to adequately meet the social, emotional and academic needs of children with aspergers . The fact that this young person has had  to access specialist support such as speech therapy and psychology in the private sector, rather than in the school setting. The high emotional and financial costs borne by families because children with aspergers are not catered for sufficiently in most mainstream educational settings. Â

 

 

 

 

 

 

 

 

 

 

 

 

From Catherine

My son is 12 years old and in his last year at mainstream primary school. He was diagnosed with an autism spectrum disorder and ADHD when he was 5, and in 2008 was also diagnosed with an intellectual disability. He also has major language problems.

He receives level 3 funding which is about 15 hours aide time a week. He needs an aide for most of the time he is in class, and the 15 hrs is spread across 4-5 mornings. He needs constant reminders to keep on task, needs a significantly modified curriculum, removal from class for remedial literacy and numeracy, and regular supervised “movement” breaks. He also needs aide input at the start of each day and for any transition. He needs to be reminded to eat and drink. He constantly chews his fingers and nails and they frequently bleed.  Managing change is very difficult for him.

On days where aides are sick or not at school he really struggles. It is common on these days for him to come home and ‘explode” which can mean physical aggression, broken windows and hours of trauma for all of us. 

The funding my son gets does not cover a lot of his other educational needs. We pay for occupational therapy which is really important for school. They help with strategies to increase concentration, manage all the sensory issues these kids have (my son is a picker, a chewer and needs to move to concentrate), and help with the common problems these kids have such as fine motor difficulties. Every child with autism at school should have annual OT assessment, follow up sessions and time for the OT to spend with teaching staff and aides. 

Technology to help these kids – laptops, computer based social skills programs, ipads, IT based communication systems and organisers are all basic parts of education for kids with autism. We pay for these. We also pay for speech therapy, additional literacy support within the school, and psychological services including work on anger management, impulse control and other social skills.  In the last year we have paid $4,960 for literacy support, occupational therapy, speech therapy, psychology and assistive technology.

 

Next year he will go to mainstream high school, our only option as he would have to travel 4 hrs a day to get to special school. The social and academic demands will increase and the gap between he and his peers will widen. There is no before or after school care for these kids at secondary school so I cannot increase my work hours from the current 11 hours per week.

Fifteen hours of aide funding, and no regular school based speech therapy, occupational therapy or psychological services for a kid with autism, an intellectual disability and adhd is a disgrace.  I want my son to learn the skills he needs to manage as independently as possible and to have a job.  It is shameful we have to fight so hard to get so little.

The key issues this story raises are –   The program for Students with Disabilities does not provide realistic levels of funding for children with disabilities. There is no funding to replace aides who are on leave There is limited or no access in many schools to regular and ongoing occupational therapy, speech therapy or psychology services Parents are faced with massive financial burdens in addition to the other challenges that are part of having a child with a disability As there is no before or after school care at secondary school, the access to paid employment for parents of children with disabilities  is very limited Â