Preparing for when we fall off our perch

How a family planned for the future by assisting their daughter to create a home and build community.

When their daughter Katie was born 35 years ago, Sue and Neil began to make plans for the future. Katie has lived in a home of her own for the past 14 years. She is well known by her neighbours and has tasked herself with many neighbourhood roles. The impact of autism has made it difficult for Katie to be understood at times. This hasn’t stopped the family from supporting Katie to live her best life in her home and make decisions for herself.

Now, with retirement on their minds, Sue and Neil are planning to move to a new town in the heart of New Zealand. Katie will be moving to her new home in the same town at the same time. This move will be the culmination of a long design phase and some powerful planning.

This is a story about a family with a strong vision, resilience, and creativity. It’s about what they did when funding was available and when it wasn’t. It’s about how they respect Katie’s ongoing independence and autonomy and how they recognise and help her make the most of her strengths. And it’s about the evolution of Katie’s support team over time, preparing for the time when Sue and Neil have “fallen off their perch.”

About Sue

Portrait of Sue RobertsonSue Robertson has more than 30 years of experience in the disability sector. She has dedicated her career to pushing the boundaries of what’s possible and is a fearless champion for families. Sue has spoken internationally on inclusion, family leadership and family governance. She is a facilitator of PATH plans and bespoke personal planning.

Somewhere in this journey, Sue completed a Bachelor of Social Sciences and a Diploma in Care Coordination to add to her teaching qualifications. She learns constantly from leaders and mentors with lived experiences of impairment, especially about the disabling impact of societal attitudes about disability. She is encouraged by stories from people who generously share their insights and wisdom.

Sue is currently is Change and Practice Manager with a large disability service provider in New Zealand. In this role, she co-designs and manages projects and initiatives that influence how current and future services are delivered.

Sue is a trustee for the Disability Trustee Ltd and an Advisor for Family Network. For nearly 20 years, Sue has been a Citizen Advocate for her friend Susan. Sue has previously worked for Imagine Better as the Family Strategy Manager in New Zealand. She was involved in the development of the NZ Autism Guidelines.

Sue lives in New Zealand with her husband Neil. They have three adult children. Katie, their middle child, has been in the first wave of social change since she was born in 1984. Katie lives a great life and has been a source of inspiration for all members of their family.