Responding to Jenny’s changing needs

Jenny is a retired career employment officer who has always been independent.

“I started working as a 15-year-old in Hobart. I was alone and away from family and friends. I did what I had to do, and I built a life for myself,” said Jenny.

Jenny has Multiple Sclerosis (MS) and early dementia brought on by MS. Modifications have been made to Jenny’s two-story house, and support workers now come to help her with her day-to-day tasks, enabling her to live independently in her home as long as possible. Jenny mainly lived on the top floor of her house, which has her living quarters, so a lift was installed so she could enter and leave the house.

“Mum is a strong, independent woman. She likes things to be her way and puts a lot of effort into making things right."

"Now she has dementia, and I am involved in making decisions. She is confused as she is used to making all her own decisions. That’s probably the hardest part for both of us,” said Katie, Jenny’s daughter .

Jenny’s disability means her needs can change quite dramatically, and sometimes quickly. Lee, Jenny’s Support Coordinator, works with Jenny and her family to ensure her needs continue to be met with the best supports and providers – and are adjusted as needed.

Jenny’s dementia and mobility have declined to the point that it is no longer safe for Jenny to live at her house.

“When I first used to visit Jenny, she was very chatty with lots of questions. As her disability progressed, she now often forgets who I am,” said Lee.

Jenny has also started using a motorised wheelchair, which is too large to fit into the lift, and she has not been able to leave her home since.

Jenny continues to make decisions for herself as best as she can, with the support of her family. They explored several options together, deciding that Jenny’s needs would be best met if she lived in a home with Supported Independent Living (SIL) support. This would allow Jenny to leave her home with full support.

“We want mum to be safe and comfortable - she likes to be warm- and to be able to leave the house when she would like to and have some freedom. I’d like her to be supported by someone who is understanding of mum’s needs and who lets me know if there are any issues,” said Katie.

Listening to what Jenny and her family wanted, Lee used her networks and visited many houses to find the right home for Jenny. Finally, an accommodation provider that Lee has worked with for a long time called her to say there was a place that matched what they were looking for.

The home was a location Jenny was familiar with, just 10 minutes away from her current house, had one other person living there, enough room inside for Jenny to move freely, and was close to a local shopping centre where Jenny could be independent. After a few modifications to meet her accessiblity needs. It was perfect.

“Jenny’s NDIS goals are to continue with activities she loves and engaging with the community. Being able to leave her house again, with support, means that she can regain parts of the life she used to have," said Lee.

"Jenny loves looking into her family history. Now she can go to the library again, visit graveyards, and continue her genealogy research,” said Lee.

The modification has just been completed, and Jenny will be moving into the home shortly, with the support of her family and the new SIL provider. Jenny is looking forward to living in her new home and already has her belongings in boxes waiting for the time to move.

“I am looking forward to getting my nails done again, visiting the hairdresser and being out in the sunshine,” she said.

As they face a future with more changes to come, Katie is grateful for the support she and her mum have.

“Mum’s dementia and MS both deteriorate over time, so her needs will increase too. Life Without Barriers has been so helpful and made life a lot easier for me, and has taken away some of the burden for both mum and I,” said Katie.