Our son Jack has a lot of good things happening in his life. He is a year seven student at a mainstream school, soccer player, downhill skier, Jiu Jitsu student, friend, brother to three sisters and loved son. All of these roles came about with careful planning and were guided by a vision for the kind of life we wanted for Jack.

 

The vision for Jack is simple: it involves him living a meaningful, contributing and valued life that is full of genuine, positive friendships and typical of other boys his age.

 

Our family has intentionally sought out and shamelessly nurtured freely given supports. We understand that these ordinary supports from people who know and care about Jack will be the ones that endure.

 

The arrival of the National Disability Insurance Scheme (NDIS) and funding

 

When the NDIS arrived in the ACT trial site, we decided to take the opportunity to see how paid support could complement Jack’s natural networks to help us to achieve the vision for his life. Prior to the NDIS, Jack had never been supported by paid workers because we couldn’t see formal disability services making his vision happen. In April 2015, Jack was successful in his application for individual funding from the NDIS.

 

If Jack was to be supported by paid people, we wanted to have the choice and control to tailor this support, with Jack very much a part of that process. We wanted to choose who would support Jack, and when and how that support would be provided. We didn’t need a support person with disability experience or qualifications. We wanted people that could see beyond Jack’s disability and work to his strengths.

 

Valued roles, not activities

 

To achieve this, we decided to self-manage Jack’s NDIS funding and directly employ his staff.

 

Jack had several goals. He wanted to deepen his roles as school student, soccer player and Jiu Jitsu student. He also wanted to develop his reading skills so he could read the menu at his favourite restaurant. Bike riding is a big part of our family’s life in Canberra, and another goal of Jack’s was to become a competent bike rider. This would open up opportunities for him to ride to school with a friend and to the local pool with his cousin after school – both typical teenage activities!

 

We considered who would be best to support Jack to do these things. We decided we wanted somebody young, cool and confident. A person with those characteristics could potentially facilitate opportunities for Jack’s unpaid relationships to flourish and, in the future, could mentor him to try different work roles.

 

Before we put paid support in place, our guiding principle was to ask ourselves:

”Are we replacing what is or could be freely given support?”

 

We were aware that people paid to provide support, if their approach is not thoughtfully considered, have the potential to get in the way of opportunities for friendships to flourish or deepen. We wanted paid support to complement the relationships and supports that were already there.

 

With attentive planning as well as revisiting and deepening our vision for Jack’s future, we employed two university students: one to be his sports coach and the other his reading mentor. We felt that developing Jack’s reading skills would be important in opening up many more opportunities, such as those of employment and independence.

 

Jack has been successfully involved in a reading program since April 2014. The program requires a minimum of four sessions per week. Jack’s new reading mentor is in her second year of the Bachelor of Teaching degree, supports him to attend this program. This additional support for Jack provides space for Jack’s father and me to enjoy other activities with Jack and his three sisters.

 

I am also delighted to report that Jack recently achieved his goal of reading the restaurant menu while out with family and friends! This may seem small, but it is monumental for us.

 

Jack only mastered riding a bike this year, so working on this goal has been a key focus for his sports coach over time. Jack has been encouraged and supported to ride home from school with a friend until he is competent to ride without support.

 

Getting the balance right between paid and natural supports

 

Other goals have emerged and are being worked on. Jack is a Jiu Jitsu student progressing towards his blue belt. Jack initially loved the independence of attending the local community Jiu Jitsu sessions with his cousin. However, after a term of classes, his confidence started to waver. We soon discovered that Jiu Jitsu is one of the most technical martial arts. We offered to support Jack in the session, but he rejected the idea; he considered it uncool to have his parents hanging around! This was his domain. Jack’s lowered confidence led to him giving up Jiu Jitsu.

 

After lots of thought, we decided that supporting Jack at Jiu Jitsu could be a task for his sports coach. Jack’s sports coach has been subtly and successfully supporting him for a term now, and Jack has fully participated in every class. His sports coach is one of several adults in the typical class, where his support does not make Jack stand out or look ‘weird’.

 

This focus on the ordinary is another guiding principle to keep us in check. We ensure Jack’s coach has the Gi (Jiu Jitsu uniform) and that he does not step in with support until all the natural supports have been offered, such as by the Jiu Jitsu instructor. He encourages Jack to fulfil the role of a valued Jiu Jitsu member of the local club.

 

During busy weeks, it would be easy to forego the planning and let our vision falter; to allow the people paid to support Jack to simply spend time with him by ‘accessing the community’. But we know this would not lead to Jack achieving his goal to actively participate in his community through valued roles.

 

We have to ensure that we use Jack’s funding on the things that really count and that these things complement naturally existing supports in his life. Most importantly, we ensure the funding assists Jack to slowly but surely work towards realising his dreams!

 

This article, It's What You Do With The Funding That Counts was written by Jan Kruger (2015). It appears in Thinking About...(The NDIS), Issue 25, 4-6 and was published by Belonging Matters, Melbourne.

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