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Finding strength together:  Navigating a good life with Individualised Funding 

How the right support transforms Wen and Lily’s journey with Parkinson’s and Hirschsprung Disease 

Four years ago, Wen was diagnosed with Parkinson’s disease, although the symptoms had been evident for over a decade.  This story follows the journey of Wen and her daughter, Lily, as they navigate living with Parkinson’s and caring for Dillon, Wen’s grandson with complex health needs due to Hirschsprung’s disease.  Their experiences showcase the life-changing benefits of Individualised Funding for families | whānau. 

Caring for Dillon: Challenges and resilience 

One of Wen’s grandsons, Dillon, needed specialised care due to Hirschsprung’s disease.  Lily embraced her role as Dillon’s primary caregiver, and Wen moved in to provide much needed support.  However, their family’s resilience was put to the test when an earthquake struck Christchurch, disrupting their lives, and leaving Dillon hospitalised.  It was also around this time that Wen was formally diagnosed with Parkinson’s. 

Overseas discovery and ongoing struggles 

The family moved overseas to seek specialist medical treatment for Dillon, finding a groundbreaking drug that significantly improved his condition.  Around this time Wen’s Parkinson’s became more apparent, making daily tasks difficult.  This left Lily with more caregiver responsibilities, often leaving her feeling overwhelmed and drained. 

Receiving Individualised Funding was a ‘turning point’ for Wen and her family.

Individualised Funding: A positive turning point 

Returning to New Zealand, the family learned about Individualised Funding (IF).  IF is a type of person-directed funding from Whaikaha (Ministry of Disabled People) designed to provide more choice in disabled people and their families | whānau to be supported to live their lives.  It is available throughout New Zealand for eligible people who have been assessed to receive Disability Support Services. Using Individualised Funding the family has paid for crucial services like physical therapy, occupational therapy, speech therapy, and counselling.  Funding also allowed Lily to be paid for her essential caregiving role.  With the right support in place, Wen regained a sense of independence, knowing she had a reliable system to lean on. 

Renewed purpose and empowerment 

The profound impact of Individualised Funding is evident for Wen, Lily, and their family.  Lily has found renewed purpose in her caregiving role, appreciating the recognition and value for her efforts.  For Wen, the funding meant more than practical assistance; it provided an opportunity to connect with others living with Parkinson’s through the Parkinson’s Society, fostering a sense of community. 

Inspiring strength and dignity 

Wen and Lily’s journey exemplifies the strength of resilience and the importance of finding the right support.  They hope their story will inspire and encourage disabled individuals and their supporters to explore the possibilities offered by Individualised Funding.   

For more information on Individualised Funding, please visit Individualised Funding | Whaikaha – Ministry of Disabled People or get in touch with a Community Facilitator at Your Way | Kia Roha to decide if this support is right for you. 

Privacy Consideration 

For privacy reasons, the names in this article have been changed. 

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