Sandra's MS journey
Sandra was in her early 60's when she was diagnosed with Multiple Sclerosis. As her condition deteriorated every day, both Sandra and her husband had to quickly adjust to a new way of living. Her husband retired early to look after her which saw their income being significantly reduced. Holidays needed to be cancelled and less time was spent with friends and family.
They needed to find out how they could still have a good life in their autumn years. Their specialist sent a referral to Taikura Trust so that Sandra could be connected with supports and services that enable her to live a life that is meaningful to her.
Sandra and her husband eventually worked with Clare Arnold, one of our Connector Case Managers. Clare listened to them as they shared what a day in their life looks like, what they would like to keep doing and what a better life looked like for them. Sandra emphasised the importance of having choice and control over who supports her. Sandra's husband also wanted to be ‘hands on’ in co-managing her care, so he also needed time to take a break and recharge.
They said that working with Clare was a turning point in their journey. Clare's knowledge, expertise and responsiveness were crucial in supporting Sandra to access services that can make life with MS a little more comfortable.
Clare helped them to obtain Individualised Funding (IF), a type of support that suited their needs the most. IF enables people to choose who to pay to carry out household tasks for them such as preparing meals, washing and tidying the house, or to provide personal care like showering and getting to the toilet. Both Sandra and her husband wanted to navigate their opportunities and self-determine their journey.
Clare said that it's normal for support plans to take time to put in place and to get running smoothly. But one of her roles is to make sure people are kept in the loop with the progress made. She wants individuals and families to see her as their partner, walking behind them on their new journey.
Sandra now accesses two respite homes of her own choice, pays her husband and other support workers to look after her at home, which enables her husband to a break when needed. Sandra feels like her overall situation has improved and that they are able to live the best life possible for them.
For more information about Individualised Funding, visit the Ministry of Health website. If you know someone who needs disability supports because of their MS, their GP or specialist can complete this online referral form. We'll look into how we can support them to live the life they choose.