Like many other parents who are raising a child with disability, Moira and her husband Stephen were concerned about how their daughter Tash would fill her days productively and enjoyably once she finished school.
Tash was diagnosed with cerebral palsy at two-years-old. As Tash has got older, her condition has progressed, and she now requires a high level of care. Now at 23, Tash uses a wheelchair fulltime and communicates with a few signs she has made up herself. Her main health concern is chronic lung disease due to her difficulty swallowing, for which she requires daily chest physiotherapy and nebulisers. A suction pump is needed at times to clear her secretions.
Moira says that Tash is a very sociable and happy young lady, and completely without judgement. She will make friends with anybody, no matter who they are. Tash connects with people easily, and makes people feel good about themselves because she is always happy to see them.
Moira had to think creatively to find a suitable post-school pathway based on Tash’s interests. A typical day for Tash starts early when she’ll wake Moira and Stephen up by banging on the side of her bed. Moira, Steve or usually Granny, will give Tash her medication, then they’ll read books or watch videos together until one of Tash’s support workers arrives to help her get ready for the day ahead. This includes helping her get dressed and into her wheelchair and giving Tash her breakfast feed via a PEG tube. The support worker will then take Tash out into the community, using the family’s modified van that fits Tash’s wheelchair.
Most weeks, you can find Tash volunteering at the local playgroup. She reads books to the children with help from her support worker. Students from the local high school and the high school at which Moira teaches have recorded voice-over of Tash’s books, so then Tash takes these recordings on her computer and uses a switch-adapted mouse to share her favourite stories with the children.
The children at playgroup love seeing Tash and hearing the stories. It also helps to normalise disability. Moira hopes that Tash teaches them that people living with disability are far more like them than different to them.
Tash also regularly attends social groups and hydrotherapy sessions. Her days are filled with dancing, drumming, crafts, swimming and catching up with friends. She even does some babysitting, looking after children while their mothers are attending post-natal hydrotherapy sessions.
Moira is grateful for the National Disability Insurance Scheme (NDIS) for providing the funding that covers Tash’s equipment, therapies, and time with her support workers, so she can live a happy and fulfilled life.
Moira self-manages Tash’s NDIS Plan. She recommends using the NDIS pre-planning documents when applying for funding and at review times. Over time she’s learnt how to make the most out of Tash’s Plan by learning from the experiences of other parents through the Kiind Families Facebook Network.
Moira has been a Kiind Member for over 10 years and is a regular contributor to the ‘Kiind Families – High Medical Needs’ Facebook group. She considers the group members as friends (even though they may have not met in person), as they share many similar experiences of complicated surgeries and emotional stress that others cannot relate. She says there’s always someone in the group to provide reassurance, and she “couldn’t have survived without it.”
Moira’s advice to others embarking on this post-school journey is to think outside the box, work with your child’s interests and network with those who have walked the path before you.
As Tash gets older, her goals for the future are to continue contributing to the community through her volunteer work. She plans on expanding her storytelling and babysitting activities and saying thanks to other volunteers who have helped her with home-made baked goods.
If you’re looking for post-school options to suit your child, book an appointment with Kiind’s Peer Navigators here.
