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Tuberous Sclerosis Australia

22 August 2019 UCF Comments Off

“In Safe Hands” – Toolkit for Teachers
Tuberous Sclerosis Australia (TSA) is a non-profit organisation that exists to support people living with the rare genetic disease known as Tuberous Sclerosis Complex (TSC). TSA has an almost 40-year history of helping children and families affected by this devastating disease.

TSC causes tumors to grow on a young personís brain and heart, and then later in life in their lungs, skin and kidneys. TSC frequently causes difficult to control epilepsy, intellectual disabilities, autism and a range of neuro-psychiatric disorders (including depression, anxiety and challenging behaviours). Every week in Australia one baby is born with TSC – there is currently no cure.

TSA was originally established to provide peer support as families navigated their way through a myriad of TSC complications and their main focus today is still to provide support for families with TSC.

As the only organisation for TSC in Australia, TSA plays a critical role in delivering a wide variety of activities to improve the lives of individuals living with TSC and their families in Australia, including support and information services, education events and advocating for research.

The specific problem TSA seek to solve is regarding the lack of appropriate education and interventions for school aged children with TSC. Children with TSC are at a distinct disadvantage because they live with a condition that teachers know little about nor how to best support and educate them.

In previous generations, a significant majority of children with TSC were educated in special schools. Children with TSC today are more likely to be educated in mainstream schools and without specialist teachers. This model is wonderful because it provides social integration and can be an environment children with TSC can thrive in. However, it means a classroom teacher needs to learn quickly about TSC to support that student.

TSA applied for a UCF grant of $2,000 to help them create a TSC Toolkit for Teachers called “In Safe Hands”. The toolkit will help teachers identify early on the childís areas of strength and weakness and customise better learning opportunities. This vital toolkit builds on TSA’s proven track record of educating and supporting the TSC community and wider community.

The grant will be used for direct project costs as follows:

  • Project Manager to develop and write up the resource ($50p/h for 28 hours) $1,400
  • Booklet design and layout ($80p/h for 5 hours) $400
  • Online resource development ($50p/h for 4 hours) $200

The total cost for the project is $11,000. TSA have already received a grant of $3,000 from Disabled Childrenís Foundation and over $3,000 in pro-bono support and have confidence that, with a grant from UCF and contribution from TSA’s general funds, they will secure additional funds required for final completion and delivery.

The expected outcomes are:

  • Outcome 1: An increased number of children with TSC will have access to individualised educational supports at school. This will be measured by the proportion of children with TSC that are assessed for various learning difficulties and are offered individualised support. Target of 20% increase in the first year following project implementation.
  • Outcome 2: Increased safety for young people with complex TSC medical needs while at school. This will be measured by checking that children with TSC who experience seizures have a seizure management plan in place within the first year. Target of 100% of children with TSC seizures have a management plan in place.
  • Outcome 3: Teachers of children with TSC will feel more confident to handle the challenges a student with TSC experiences while at school through increased understanding of the disease. This will be measured by the increased proportion of teachers who feel confident managing a student affected by TSC. Target of 80% increase in confidence in the first year.

UCF directors felt there were sufficient measurable outcomes to approve this worthwhile educational project and approved a grant of $2,000.