Marelle and Katie’s story

NDIS storiesOne year ago by Renee
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Marelle Thornton with her daughter Katie, who lives with cerebral palsy.
 
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This week we sat down with Marelle Thornton as she and her daughter Katie prepare for the National Disability Insurance Scheme (NDIS) roll out.

Katie is a strong 39 year old woman living with cerebral palsy and epilepsy. She has a job, loves watching DVDs, travelling and listening to music …

This week we sat down with Marelle Thornton as she and her daughter Katie prepare for the National Disability Insurance Scheme (NDIS) roll out.

Katie is a strong 39 year old woman living with cerebral palsy and epilepsy. She has a job, loves watching DVDs, travelling and listening to music (John Farnham is her favourite). Katie lives in Cerebral Palsy Alliance supported accommodation and has an enviable movie collection.

While Katie will be present for the important meetings, Marelle is getting the facts to help Katie get the most out of her plan. Marelle attended an NDIS information session at Allambie Campus and has booked in for her Preparation and Support Meeting.

And like any parent, Marelle wants the best for her child, to make certain that her daughter takes advantage of new opportunities and to make sure she has all the facts, information and support to do that.

“I would recommend the NDIS information session as it brings clarity to a scheme that is brand new, with new terminology and new processes. The NDIS information session helps you make sense of what at first appears to be a somewhat complicated process,” Marelle told us.

“I think it was interesting listening to other people in the information sessions and hearing the concerns that they might have, things you may not have thought of or you too wanted clarified. Questions are welcomed and no question is a silly question, which is a good thing – it makes you feel comfortable.”

Change is coming for all people living with a disability, their families and carers. Marelle has worries, just like other parents, about how the new system will work and the impact it will have on her daughter and other people living with a disability. With the insights, learnings and information she gained through the NDIS information session, Marelle has seen some new opportunities for people living with a disability to access funds for those supports they need to live safely and successfully and to add value to their lives..

“I see that NDIS will make access to funding a lot easier. Many of the current schemes that fund disability service components will be collapsed into the NDIS so that you won’t have a million ports of call – having to deal with many different agencies for funding. You can be assured the money is there for the things you need that are reasonable and necessary. It’s a one-stop-shop for the funding.”

Through the discussion we could see that the NDIS plan has the potential to open doors to other opportunities for Katie, especially when it comes to her social participation.

“I think Katie’s horizons will be elevated a little bit because there will be funding available for more community access for her. There will be more certainty that funds are available to her to enable a support person to be with her for her weekend outings – to ensure she actually can go out.

“Many people like Katie don’t have a lot of money of their own, so having the funds for a support person for activities and travel will mean a lot for Katie.”

Marelle will be focussing on the planning part of the process now, compiling all the reports she has and working through the extensive preparation and support list with us.

“In a number of areas Cerebral Palsy Alliance has always provided an opportunity to plan and Katie has some plans in place already.

“She has a plan for her individual employment path, for her primary health care and wellbeing as well as a plan with her accommodation service. These plans also encompass her social life, her participation in the wider community and those supports that are unique to Katie.

“Katie needs to be able to access the community. She needs to be able to get out and about, to afford transport and to be assisted to ensure enjoyable social experiences. What makes her happy is that she is fully supported in all she wants to do.”

It’s important for Marelle that Katie will be a voice at the table, a part of the process and have the opportunity to express her own ideas about anything at any stage of the process.

 

“I will be taking Katie to the planning meeting, of course. The planning is all about her and so she needs to be central to everything. She may not fully understand the mechanics of the process but she will understand that the planning will ensure that her essential needs will be guaranteed. Katie is not very demanding, but she certainly likes to be assured that all support and back-up are in place.”

Even with her extensive experience and learnings, Marelle will be working with the right organisations and services throughout the transition process.

“For people with cerebral palsy one thing I find comforting is that there is a one-stop-shop for services through Cerebral Palsy Alliance. I know that in the planning stage and beyond, they will be there to hold my hand and guide both Katie and me as needed. Cerebral Palsy Alliance has all the learnings and experience with the NDIS, having worked in the trial sites in this state and in the ACT and having helped many people and families with plans that are working very successfully.”

“As a parent, it is very important to me to know that Katie and I have a partner like Cerebral Palsy Alliance to help us through the preparation and planning. It’s all so new and can seem somewhat confusing and complex. I know too that other people with disabilities, parents and carers feel likewise. With the support of Cerebral Palsy Alliance, navigating the NDIS will be less of an overwhelming experience.”