ANNETTE ROEHRERTo investigate programmes that enhance eduational and vocational opportunities for adolescents with traumatic spinal injuries and congenital spinal impairments - USA, UK
To investigate programs that enhances educational and vocational opportunities for adolescents with traumatic spinal injuries and congenital spinal impairments – USA, UK, and France
I was very honoured to have been awarded a Churchill Fellowship and at the time was working as nurse in charge of the Douglas Parker Rehabilitation Centre in New Town, Hobart. As part of my work here I was a member of the spinal rehabilitation team and was also very involved in the Tasmanian Spina Bifida Association.
I wanted to find out how we stood in relation education and vocational opportunities available within Australia for young people with either a traumatic spinal injury or having been born with a spinal anomaly.
As a paraplegic, confined to a wheelchair, I decided to travel alone so that I could gain a greater understanding of how people with physical disabilities were accepted when travelling alone.
Unfortunately the centre where I worked was closed before I undertook my fellowship journey but I have subsequently been able to use knowledge and skills gained during my fellowship in my current position as a cardiac rehabilitation nurse and in my varied voluntary work.
My first stop over was in Seattle, Washington State, where I visited a number of schools where children with disabilities had been included. There were two types, one for total inclusion into regular schools that relied on extra funding from the state for supported equipment and teaching support. The other was a special school in the grounds of a regular school where children with disabilities could be included when able but where every child could assimilate during recess and lunch.
It was interesting that all equipment remained the property of the state and if the child was required to move due to parents work then the equipment stayed behind and the family needed to get everything in their new state. This was even for equipment developed solely for the child. This is not very helpful for the child or parents concerned.
My next stop over was Denver, Colorado, where I went to a specific spinal injuries rehabilitation centre. This was amazing and highlighted the difference between those insured and those who were not. If you had insurance then you had everything you wanted. If no insurance then it was up to the families to raise money any way they could.
My last USA stop over was Houston, Texas. This was a very enlightening visit and showed me there was still a lot of inequality between black and white people. The institute had many programs that helped all levels of society and provided educational opportunities as well as rehabilitation. My impression of the black clients was that they had very little education so very poor prospects of employment post injury. One centre I visited started with basic literacy and money management. I was able to speak to clients and to hear their stories and it was a great shock to learn that gun shot injuries were the main cause of spinal injuries in the USA.
One thing I did notice in the USA that many people with significant disabilities were actively employed in a great range of professions and occupations. At every stop I was asked if I would like to come back and work in their institution.
Next I went onto the UK, firstly England where I was made extremely welcome by the English Spina Bifida Association and was able to catch up with friends I had previously met at international conferences.
I was invited to stay at an independent living centre in Ilkley, Yorkshire, where young people with spina bifida were being assisted to become independent so they could live alone and gain meaningful work. This was something I would like to see here in Australia so that parents could see what their children can do alone. I also visited another centre closer to London where there was an independent living centre plus a sheltered laundry where graduates could gain working experience and an income above their pension.
I then travelled on to Edinburgh, Scotland, where I was taken to a special school that worked with spina bifida children to get them to a stage where they could gain access into a regular school. These children had a whole allied health team working individually with them to achieve independence.
Scotland also had transport available to all people with disabilities to access taxi transport for the same cost as regular transport for able bodied persons. This enabled disabled people to be able to work without exorbitant transport costs. Something that is not available in Australia.
Another interesting thing available to the spinal injured and spina bifida persons was the use of a Para walker that enabled them to stand and walk with a frame around the home, workplace or school. I saw one ten year old who could maneuver his walker so well he needed no crutches and could stand and walk around the classroom with ease. He used his wheelchair at play, as it was faster. Para walkers were highly expensive here in Australia.
I also visited a hospital in Glasgow that had an engineering department that made adaptive equipment from easily available items to reduce costs for older people disabled from thalidomide. These engineers were amazing people and made some incredible devices for people to be able to do simple things like clean their teeth, brush their hair or to just operate curtains by blinking.
My next stop was Mulhouse, France, a multiple injuries centre. This centre was exceptional and they had a contract with Peugeot to make car parts in their occupational therapy sessions. They also made equipment for their clients to help them regain or gain employment in their chosen field.
Here they practiced integration first hand with their staff often having disabilities themselves. The medical director here was a paraplegic himself, after contracting poliomyelitis just as he finished his medical degree. It was certainly an interesting experience going on ward rounds with both of us in wheelchairs. Others of the team had disabilities too, the head of physiotherapy was totally blind and one of the engineers was an amputee.
Integrating those with disabilities into a rehabilitation setting certainly helps those newly injured to believe that they can succeed after their injury.
FELLOWSHIP CONCLUSIONS AND OUTCOMES
When I returned I realised we had made good progress but that there was still work to do in properly integrating children with disabilities into mainstream education.
I was able to offer some advise to a programme being developed at Cosgrove High School for young people with disabilities to be integrated into mainstream schooling. They were also able to receive necessary specialist and allied health help if required.
Unfortunately although inclusion has progressed, the necessary allied health input has been dramatically reduced and many children with disabilities do not get adequate assistance and funding to make the most out of their inclusive educational opportunities.
I have also worked as part of the Executive Committee of the Australian Spina Bifida and Hydrocephalus Association together with the New Zealand Spina Bifida and Hydrocephalus Association to lobby and pressure our governments to fortify flour with folate. New medical information had shown how important folate was to the developing embryo in the first twelve weeks after conception. It particularly important in preventing spina bifida in the unborn and unfortunately most women did not consume enough folate in their normal diet. We were successful in this endeavour at least into Australia.
I have continued to work with various organisations to raise issues relating particularly to inclusion for those with spina bifida. My most recent work has been as an executive member of the Neuromuscular Alliance Association of Tasmania and my work on the National Disability Insurance Scheme.