Two and a half years ago, Kirby Littley was diagnosed with a brain tumour. After surgery she had a number of strokes which led to an acquired brain injury. Kirby’s mother Carol Littley recalls how her family found out about the NDIS, and how the Scheme has helped Kirby to reach her goals.
The first time the NDIS was mentioned to me was during a bad time in our lives.
Our daughter Kirby was extremely ill and being moved from a hospital in Melbourne to Geelong. I’d made contact with the hospital and was speaking to a social worker who suggested that I contact the NDIS to discuss our daughter’s potential involvement in the Scheme.
I was very angry and in absolute denial that Kirby would need any assistance from the NDIS – I told myself she was not going to have a disability, even though at that stage she could only move her toes and head.
Later when Kirby was in Melbourne at another hospital and we were trying to find rehabilitation for her close to home, we met with a local area coordinator and a planner at the Geelong trial site office. It was the first time that we felt there was some hope for Kirby.
That was the first of several meetings, discussions and plans being made so that eventually Kirby could come home with us. Kirby was a unique participant, because her disabilities were constantly changing. Some things, such as deafness in her left ear, paralysed vocal chords and double vision, were not going to disappear, but physically Kirby was improving – slowly, but improving nonetheless.
I joined a self advocacy group which was involved in getting young people with disability out of nursing homes and into more age appropriate-accommodation. There I met an advocate who was very experienced in disability needs and services. Under Kirby’s NDIS plan, she became our coordinator of supports.
The NDIS was a new world to us, as was having a family member with disability, so having an advocate who was keeping up with the many changes that were part of being in a trial site was a necessity. We felt relieved that she would be able to work with the NDIS planner to get what was reasonable and necessary for Kirby to achieve her goals.
During regular meetings we met with our NDIS planner and allied health staff to discuss what Kirby would need to get home. The OT came to our home to see what was needed in the bathroom and reports were presented on Kirby’s equipment requirements – wheelchairs, beds, hoists and daily personal care assistance. Support workers were trained, the bathroom was renovated and equipment began to arrive.
Finally the day came for Kirby to come home to our place.
It was so wonderful to have Kirby with us and within a few weeks, the home-based allied health team told us that since arriving home Kirby’s progress had been so impressive that she was now eligible to use the community rehab centre. Kirby was home and happy, so this improvement didn’t surprise us.
I asked the doctor at the rehab centre what would have happened if there was no NDIS and he said that Kirby would have no option but to stay in the nursing home. She was depressed there, though she always put on a happy face, but she missed her pets, being able to play her music and the freedom to do what she wanted. What 30 year old wants to live with people in their 80’s?
The thought of Kirby having to live in a nursing home is not something I want to contemplate, but it could so easily have been a reality. Kirby would not have progressed and would probably have gone backwards with her rehab stopped. Her potential to improve and learn to walk, talk and swallow would have been non-existent and the opportunity to go back to work would probably never occur.
The NDIS has lived up to our expectations in providing what is necessary and reasonable for Kirby to achieve her current goals. She has already achieved some of them and is excited about her future.
I have been surprised at the positive response we get when making the odd complaint to the NDIA. Staff always listen and take our concerns on board. I remember we had a problem with taxis when the plan was in limbo between the old one ending and the new one starting. The taxi company wouldn’t let us claim through the NDIS, so we contacted the NDIA and they sorted things out. More importantly, the lady on the phone thanked us for bringing the issue to her attention, so that it wouldn’t happen again.
To participants and their families, my advice would be to:
- Know the life you want and prepare some goals for the next twelve months that will help achieve that lifestyle
- Find an independent advocate to support you
- Be prepared to negotiate – be aware that you can pay the difference if you want something more than what is reasonable and necessary, such as a double bed rather than a single
- Resist comparing plans with other participants – everyone has different goals
- Ask questions about anything you don’t understand in the plan
- Listen and learn from other people’s experiences, but don’t assume they will be your experiences
- Understand that there may be problems, but they are fixable
- Stand up for your rights and ask for a review if you are not convinced that your plan provides what is reasonable and necessary
- Contact the NDIS when you need more information or are concerned about a process
- Believe that the NDIA wants people with disability to live the best life they can