June kicked off with a hiss and a roar! I kicked the month off with another “Intro to Enabling Good Lives (EGL)” down in Wellington with Imagine Better for District Health Board (DHB) staff. We had a good cross-section of Children’s Hospital staff; including, OTs, physios, nurses, and a paediatrician. We also had a handful of social workers, OTs, physios, Allied Health Aids and a couple of Team Leads. The day after I was off to the Mid-Central Leadership Group meeting. By the time I had travelled to Wellington, delivered a training, driven home and a full-day meeting, I was beat.
I had planned to go for a wander to Alice-Nash Memorial Heritage Lodge the following week, but after the head cold from hell, then a very busy week and a stack of work to get done for our Community Engagement project; I decided it was probably better for me to stick around and get some work done. This gave me time to get a lot of background work done, a site visit for a disabled young adults camp, try to keep on top of my rehab, to do some writing and try to spend some quality time with MJ.
The following week I was back in front of people, introducing them to Enabling Good Lives. First, it was Ministry of Education staff. Martin Sullivan did an awesome summary of Disabled history in NZ. It never fails to blow my mind how legislation was used to entrench disabling thinking and practices into our society. We still have relics of legislation that are continuing to disable New Zealanders, the policy flaws and systemic medicalisation of disability further contribute to disabling practices; despite “de-institutionalisation”, disabled people have far poorer social wellbeing outcomes compared to their peers. Disabled people are just trying to live as part of our communities, yet we constantly face barriers just living life, this often means people are barely surviving rather than thriving. It is always interesting to see where our lives intersect with others and it was good to see my childhood neighbour in attendance.
Then it was off to Porirua for another session for DHB staff. This was an interesting group, a lot of community workers; social workers, OTs, physios, again another couple of team heads (including one who attended one of the previous sessions), nurses, a visiting neurodevelopment psychologist and a forensic psychologist. Again more good discussions on how to try and implement the EGL Principles into their practice. The funding mechanism is something that people are focused on, and I can understand why. A lot of how people can practice within the Health and Disability System is funding dependent. After Ministers Sepuloni and Little’s announcements in September we will all have more of an idea of what some of the funding mechanisms will be. It is a shame that a lot of EGL conversations have become so focused on “postal code funding” and not what is truly important; which is how people are treated and changing these systems across the board. As I said to one group (of health workers) “The Principles are a framework of what is essentially good practice in how people access health care in equitable ways.” The Principles don’t just apply to “disability systems” or “health care” but can and should be applied across society as a whole.
I can already hear some of you saying “Antnz, this is starting to sound like you getting too busy for your own good again.” I totally understand why some of you say this, I know there are times when I take too much on and feel like I am constantly chasing my tail. But apart from a mid-week “Intro to EGL” in Kapiti, I took most of the rest of that week off. I don’t want to burn myself out again. Which is why I rested while I could. I’m also trying my best to make sure I don’t jam too much into one week. I also scheduled some time away with MJ for a few days in July so although I’d been busy I am trying to balance out the work with rest.
For the Kapiti session, I drove down the night before, I had arranged some accommodation for the night. It was apparent over the phone that they weren’t thrilled I was bringing ADNZ Raven, “please keep the dog off furniture and bedding”, I had asked for a bathroom with a shower stool. Let’s just say I won’t be staying there again. When I checked in, I was again asked to keep the dog off the beds, furniture and carpet. I told the guy I would “do the best I could but I am covered in dog hair to start with, she has been groomed this morning, that she has her own bedding and that I have a sheet to go over the bed to protect it. I got into my room to find a standard bathroom with a plastic garden chair in it. Not impressed and I won’t be staying at that motel again. I know have the ability to be able to cope with “making do” but many people are not that fortunate.
It always catches me off guard when someone calls me Toni. The only people that really call me that are people in an “official capacity” (doctor, lawyer), family or someone that has known me before the mid-2000s. Turns out that one of the attendees was the mother of another student that I had worked with AS@U (Association of Students @ UCoL) as Disability Co-Ordinators. It sometimes surprises me who I cross paths with at different times. Again it was another good cross-section of fields, mostly community and outpatient OTs, physios and Allied Health Assistants. Again, some great conversations happening around the table. Throughout doing these sessions many clinicians have expressed a desire to work in an “EGL way” but due to time constraints and strict criteria means they often feel that they are not able to work with people how they would like, instead of having to work through a prioritised case list with limited time to reduce the case numbers.
For the session in Kapiti, I had invited Pete and Natt (who are both very involved in EGL in Mid-Central) to come down and do a bit of a “peer review” for me. I find these helpful to ensure that this training covered everything it must and should contain. Most of the presentations we have done with Mid-Central Leadership Group have been aimed at disabled people and their whanau/families people, so these DHB training sessions had a slightly different focus. It was good to hear Carey-Ann and I had hit all the “must” and “should” knows, that we work well with each other and that they could hear that group work was where people were able to explore how the EGL Principles fit into their day to day work. I know if Pete hasn’t got a list of “constructive feedback” then we must have done a good job!
The next thing I knew it was already July and I was off to Masterton to deliver another “Intro to EGL”, I figured seeing as I was going to Masterton that I would do the training then head out to Holdsworth Lodge, stay the night and head up to Rock Lookout then home the following day. The training went really well and I was heartened to see almost half of the attendees were current Needs Assessor and Service Co-ordination (NASC) staff. In a lot of ways I feel for current NASC staff, they are trying to work to enable people yet are so restricted by the way criteria that are laid out and must be met is far from what the original intent how a NASC was to operate. This is further highlighted by the complete imbalance of power that many disabled people have felt at the hands of a service that is supposed to be helping them (that’s if they can even get into the service). Again the NASC staff currently are wondering what new structure awaits them come September and the announcements due from Minister Little on Disability Supports.
As I arrived at the car park of Holdsworth I was met with traffic cones, DOC staff and a landing zone. I pulled into to car park and was stopped by a staff member who asked me where I was headed and advised me that they were finishing an aerial 1080 pest control operation the next day. The area where I was headed wasn’t part of the plan for the operation, however, the choppers would be overhead with 1080 onboard headed to the drop zone. After a couple of hours of travel, facilitating a training session I wasn’t really up to heading straight home. So I headed into Holdsworth Lodge for the night, thinking I might have a quiet night in the hut.
I was almost disappointed that there was smoke rising from the chimney as I walked in, but then I realised that I then didn’t need to get the fire going, some of the best nights at huts and campgrounds are with complete strangers. I was met by a group of 3 who were getting the fire going properly and getting wood in from the woodshed. As all this was happening, one of the DoC wardens came past to turn check who was around, check the area for dead rodents and do some safety compliance around the lodge for the aerial operation. Shortly after that, another 2 groups of two arrived for the evening. It was nice to sit around chatting to people, as usual, ADNZ Raven made friends with everyone.
The choppers went up at about 8 am the next morning and I took my time getting ready before I made my way back homeward, arriving home just after lunch. I got a quiet weekend at home before I launched into another busy week of EGL work. I had the usual round of monthly meetings and a meeting with a potential panel member for an event in September.
The event in September is being held by the Mid-Central Leadership Group (MLG) titled “Enabling Good Lives in our Community” and we are looking to hold a panel discussion with local leaders. The panellists have been asked to think about how they are currently implementing EGL Principles in their roles and their “next steps”. MLG thinks this is a good way to bring the wider community along and to put the onus on our local leaders to be part of making EGL real particularly in regards to Mainstream First. Planning for this event is coming together well and keep your eye out for event details as they become more concrete.
This led to me making contact with Tangi Utikere our local member of Parliament during June. A delegation of MLG members met with Tangi the second week of July to introduce him to EGL and some of our community and how advantageous Enabling Good Lives has been to our local region through the Mana Whaikaha prototype. We also asked Tangi to support wider “disability-related initiatives” (such as Access Alliance, Free Fares for Carers, Hikoi for Hope etc) and the across government/agency approach that needs to happen to fully see positive outcomes for disabled people and their families and whanau for the EGL Vision and Principles to be fully fulfilled.
I also met with the Safe Communities Coordinator (Anu Sefton) from Palmerston North City Council, we have both noticed the need for something around sexuality education and safety for those with learning disabilities. I introduced her to All Sorts Cafe; which also works with a Private Tertiary Education provider that we have used for some of our multi-core group meetings as an accessible safe space. I know there can be more done in the “safety in the community” so it was good to reconnect with Anu and I can see her being invited to a Disabled Person’s Core Group meeting in the future.
I then disappeared away for a week with MJ. After being so busy we needed to take some time out and reset our brains. I seem to have a bit of a pattern of heading to the Taupo hideaway about this time of year. It’s the same time of year that the Fuchsia (one of NZ’s few native deciduous trees) start budding before they flower and produce leaves. This always reminds me that sometimes there is more happening, even if you can’t always see the results. The fuchsia looks almost dead after dropping its leaves then all of a sudden they explode with flowers and leaves and are full with tui. On this trip I actually had a 55-210 lens and I made the most of having bird life around to test it out.
A huge shout out to Natt who picked up the majority of organising an MLG stall at the year Home Show. Natt organised a roster of disabled people and their whanau to be in attendance and just have EGL based conversations with the community. While I was there I had a few people wondering why we were there, which in turn led to a conversation about a lack of accessible housing. It was a good way to introduce EGL to people and start getting the word out wider than the “disability and health” communities. It was also noted that we had a little more traffic past the stall when one of the Assistance Dogs was around! Big heartfelt thanks to everyone who was at the stall and helped Natt to make it happen. It was good to know that you all had it covered while I was away, I just turned up to do my shift and help Natt pack up…. although we should have thought about that a little more….. Having someone with a visual impairment, and someone with multiple mobility aids (dog & “just in case” safety sticks) I’m sure was comical to watch.
The following week I managed to see an old friend speak then caught up with him for lunch. Wayne Forrest and I both attended the Back-Up New Zealand (BUNZ) pilot program early in 2002. BUNZ was the brainchild of Jane Denton and was loosely based off the UK organisation, Back-Up which got those with spinal injuries out enjoying recreation and life. For both of us being on that program had lifelong learnings, and significantly changed the trajectory of my life. In one week we went; tramping, abseiling, scuba diving, rock climbing, kayaking and paragliding. By day 3 or 4 I was ringing home asking MJ what adventure courses Universal College of Learning (UCoL) offered. Wayne was a large part of my decision to look into outdoor recreation employment opportunities. Now to give you some context, when I went to the BUNZ pilot program I was preparing to head back to a graphics design course, I’d picked that to study and to head towards as a job because “I can do that from my chair or with crutches”. For me being re-introduced to these sorts of activities was really freeing because as an integrated program (half disabled, half nondisabled participants) everyone was giving the absolute most they could with what we had so the group as a whole completed the objectives or activities.
On day 3 we went to the Napier rock climbing gym and when I hit the wall nothing else existed, I had found my “thing”. As I rested, I watched the instructors rigging up a pulley system to enable Wayne to do a rope climb. Wayne was a farmer (still is), a dad (now a grandfather), but he also happened to break his neck during a rugby game and is a full-time wheelchair user with little more than his shoulder muscles and biceps (correct me if I’m wrong Wayne!). I could get into the technical components of the pulley system, but I won’t, I’ll spare you all. I then watched Wayne use his own power to ascend 7m of rope. When Wayne got lowered to the ground he had a rope down one side of his forehead, he had one side that was stronger than the other and must have spent almost the whole 7m sliding his head up the rope as well. After watching that my mind opened up with “If Wayne can do that what is stopping me from introducing others to the outdoors, and my journey into Outdoor Recreation as a career began. It was good to catch up and have a yarn with Wayne. If you want to hear more about my Back_Up NZ journey, let me know in the comments.
After lunch, with Wayne it was back to mahi with the monthly Disabled Reps planning meeting, then the following week into the August EGL meetings. As I sit here I am wondering where the hell the last few months went. I totally recognise that I’ve probably been busier than what I should ideally be, and I am working on doing more delegation of some of the work, and I recognise that I have been doing a lot of “setting things up” so things become easier over time. This also means when others are facilitating, presenting or planning events we have good documentation so we are all working from the same page.
At the time of writing, near the end of August 2021, NZ has just been put into a Level 4 Covid Alert Level, putting the nation into lockdown. A single case of the “Delta variant” was detected in the community 3 days ago triggering a “Go hard, go early” response from our government. My region has initially been locked down for 3 days but I am expecting it to be a week. The hopeful news is that the probable source has genomically matched to a case in our Managed Isolation and Quarantine (MIQ) system, and there are probably only one or two links of the transmission chain between the MIQ case and the community case. In 3 days the cases have grown to 21, our testing and tracing systems have ramped up and I really hope that our government has managed to lock us down before this variant got a foothold across the country. To be honest; I don’t think our health system has the capability or the capacity to cope if Delta really takes hold and we have a wide-scale outbreak, which is why I agree with the “Go early, go hard” response. Kia kaha Aoeteatoa. We’ve got this.
E tu kahikatea, hei wakapae uroroa. Awhi mai, awhi atu, tatou tatou e. Kahikatea stand together, their roots intertwine, strengthening each other. We all help one another and together we are strong (Whakatauki: Maori Proverb).