Contributed by: Kate Cosgriff, Director, Enabling Good Lives Waikato
It's exciting to be part of current discussions about the future of system transformation and the possible options for the extension of Enabling Good Lives (EGL) Waikato. Like many other areas, our community is ready for increased flexibility, choice and control.
In this update, I'd like to highlight some ways families are using small budgets flexibly. Despite this challenging year, there have been many excellent outcomes achieved. Small amounts of money can make a real difference.
In the past, many families struggled to use their allocated carer support days in ways that made sense for them. When we change the allocation of carer support days into a flexible self-managed budget and assist with a tūhono-connector alongside a disabled person and their family, we have noticed some excellent outcomes. There is an opportunity for the tūhono-connector to work with disabled people by suggesting ideas and encouraging people to do what's right for them. The following three stories illustrate this.
The first family live in a rural area on the Auckland/Waikato border. They moved a few houses down their road to living in the Waikato region and are therefore able to access EGL for their pre-schooler who has down syndrome. The family had received a small carer support allocation in the past but didn't know how they could use it. When they joined EGL, the family converted their allocation into a flexible budget. The family were encouraged to think about what would assist them. Mum and Dad now employ trusted people to care for their child occasionally so they can have some couple time. Their first break was sitting on their deck together relaxing.
Going out for a coffee is something they can now look forward to experiencing, whereas, in the past, they struggled to find time for their self-care. The second Auckland lockdown meant they were unable to access work and daycare on the Auckland side of the regional border. They used a part of their budget to purchase a trampoline, and their child has had hours of fun at home.
The second story is about an 11-year-old girl who has a learning disability and lives with her grandparents. They also received a carer support allocation, and EGL was able to convert their allocation into a flexible budget and have the money in their EGL account. As a result, they paid for a mainstream holiday programme in their local community. The young girl was struggling socially, and the programme staff were terrific in assisting her in engaging with other children and supporting these children to find ways to communicate with her. These relationships have developed into friendships at school, and this year she has received her first-ever birthday party invitation. The invitation is a highly treasured possession which has been laminated to stay intact. The social impact for this young girl means that she is now able to engage with her peers without feeling left out of social engagements.
The third whānau have a six-year-old with very high support needs, including constant night cares. The tūhono encouraged the parents to put their wellbeing at the centre and use their small weekly support allocation flexibly. They found a local person they trust to care for their child and now take fortnightly breaks as a couple. This has included catching up with friends out of town that they've had no time to see, going to the movies together and dates out. Recently the Mum emailed: "I have a thrilled husband. We look forward to our time together, and it's reunited us.”
The fourth story shows how small strategies can have a substantial positive impact. Sally is in year 11 at college where a learning support satellite supports her through school. Sally has autism, and when we first met her, she was too anxious and needing a lot of support to be comfortable at school. EGL worked with the learning support team, who were alongside Sally initially in classes. The senior teacher worked with Sally's teachers to help them understand her needs. In a meeting with Sally and her family, we discussed her major fear and stress of being stuck in class, unable to leave and self-regulate when she becomes highly anxious. Sally finds it challenging to talk in class, and even worse if she has to identify that she needs a break.
The solution was a 'get out of class' card. It has been set up that when Sally puts the card on her desk, she can leave with no questions. She sits outside for a few minutes and comes back into class when she's ready. Since she has had the past, Sally has used it less, as just having this strategy in place has made a difference to her overall anxiety levels. Sally is now engaging better in her learning and gaining qualifications for when she leaves school.