Copyright© 2018 Project Happen Ltd.
Is there an upside to budget restrictions?
Note: the following article is my own thoughts and opinions. It does not necessarily represent the philosophy of any agency or service.
Many thanks to David, Linda and Dan for letting me share their story in this way.
In his late 20's, David had a cardiac arrest; he was technically dead for 12 minutes.
I have been privileged to meet and work with David and his mother, Linda, in my role as Independent Connector.
David finds verbal communication difficult. However, over a couple of visits, he and Linda talked about their lives. David is determined to walk again, he places priority on visits to the gym, to the swimming pool, to kick-boxing classes, and to other rehab. He loves the outdoors and fishing. In all of these things, David requires monitoring for his safety.
When I met them, David and Linda were in a period of change: three of David's regular Support Staff were leaving the team and Linda wasn't sure how she was going to manage. As part of our conversation, I asked Linda “Why do you think your life is interesting?” This was her response:
“I think my life is interesting because I've overcome the last 6 years of trauma, shock, and death of our much loved Jacob who was killed by a truck. I have overcome cancer, the shock of David's cardiac arrest and journey back to health. With all the trauma and adversity, hardship and devastation, my husband and I have held on tight to each other as a couple and family. Life has been so cruel, and sometimes people have been as well - professionals, opinions of others, especially negative and pessimistic doctors who offered no hope or support for David. We as a family never gave up, have had to fight for him, fight for treatment, demand at times, but most of all remaining full of faith and positive that things will get better for us all.”
This family is well acquainted with systems.
David's personal plan and proposed budget were submitted to Mana Whaikaha. The response from them was that they were unable to provide the funding David and Linda had requested. The budget needed to be re-considered.
This afternoon, Linda, David and I re-visited David's 'good life', and Linda reflected on their lives over the past weeks.
With not enough Care Givers, Linda asked David's cousin, Dan, if he might be able to help out. Dan has a sleep disorder that makes it difficult for him to be out and about before noon but with a bit of shuffling around, that was accommodated. Dan learnt how David needed to be supported and they started hanging out; going out for coffee, to the gym, to the pokies etc. On one occasion, David, Dan and their Grandfather went fishing. Linda and her mother sat in the van, chatting and watching the hilarity that was taking place on the beach. Dan got a rather small fish, Linda got photos.
Then Linda's Mother died suddenly. For an intense period of time, Linda and David needed a lot more help. Enter one of David's support workers; she arranged her own life so that she could do five full days in a row, ensuring that David's needs were met while Linda focused on the wider whanau.
When Linda's thinking moved from 'use it or lose it' weekly hours, to annual hours with flexibility to be prioritized when and where needed, the anxiousness around hours became less. Further, Linda, David and their support staff have a relationship of mutual respect and appreciation. They communicate directly. This promotes flexibility within the employment arrangement. To this end, David and Linda chose to reduce the part of the budget that related to support hours.
The part of me that has worked for over 30 years in a sector that is undervalued and underfunded is exasperated and disappointed by the 'chipping away' of support. The cynical part of me says that the Government's intention is to save money.
But part of me that has watched families over those 30 years says that the strongest families I've seen have been those that relied on the strengths of their developed networks and natural resources, rather than the strength of funding. Part of me wonders if this might be the upside to budget restrictions.
I have been inspired to write this story about David and Linda because when I visited them this afternoon Linda said to me: “If David had had his usual support, he would have been at home instead of out fishing. We would have missed that wonderful time on the beach with my Mother, we wouldn't have those memories.”
Who can be cynical about that?