2019 is a crucial year for the disability sector and its challenges are familiar, from funding to information, to new prototypes and putting the work into all the talk. Here are my five challenges for the disability sector in 2019.
Funding: Providing real “choice and control” support options and room for changing need
Late in 2018, a report published by NZDSN and Deloitte claimed that the disability sector is currently underfunded to the tune of $150million, citing a 12% gap between Government funding and the actual costs for supporting disabled people in New Zealand.
Providers argue that the underfunding across the sector has been a long-held problem and that without increases, their ability to provide more flexible support options will remain compromised. $49.04million is currently allocated to the MidCentral prototype, a much talked about trial that aims to provide more flexible support options and choice to disabled people and their families.
For disabled people and families, it is important that their funding packages are allocated to have significant, not minor, room for changing and increasing care needs. What this really means is having the ability to increase funding if required, and to do it quickly. The belief in many circles is that investing earlier can lead to lower costs for supporting disabled people, particularly if alternative futures other than Residential Care/Group Homes are found. But what for those with changing and increasing needs?
The new system being trialed in the MidCentral, and previously in the Waikato, shows that supports can be flexible in terms of how they are delivered. This is especially true in the cases of being slightly more cost-effective, removing the “man in the middle” in a lot of cases to keep down HR and other managerial costs, but the actual support budgets themselves are often fixed and difficult to increase by large amounts if needs suddenly increase due to prolonged sickness or advanced deterioration of existing conditions.
If NZDSN and Deloitte’s report is to be believed, one could argue that the $150million funding gap in the sector goes well beyond just services. The more discussion, investigation of, and critical evaluation across all levels of funding, as well as comparison with other sectors, will be vital in 2019.
Information: Relaying information to, for, and about the sector in a modern way
How information is relayed to disabled people and families needs a serious shakeup in 2019.
We live in the digital age, and it’s time that news, views, and discussions pertaining to disability are presented in a modern way. Written text via monthly newsletters is no longer the only way information should be shared with the community. Video in the form of YouTube and live-streaming platforms like Twitch and Mixer, pictures via Instagram and Facebook, and audio through podcasts on services such as iTunes are just a few of these more modern ways of communicating. Many organizations and a handful of influencers are well established on some of these platforms, but the majority remain underutilized, and it’s disappointing because this can and should be leading to many job opportunities across the sector, jobs that disabled people are well capable of doing.
Beyond that though, we need to get away from this subconscious fear that information needs to be censored. Information needs to be carefully and strategically released to the community, but it also needs to talk to the people in the community, not just at them. The sector likes to focus on the good stories, but many of the elements for change can actually be found in the bad stories. This information also needs to be accessible for all, i.e available in easy read and accessible to the deaf via captions in videos, but it doesn’t need to be as rigorously controlled as it is. There is often paranoia about misinformation spreading through the community due to the impact that this could have on the so-called “safety” of disabled people, and/or some of the tired concerns around privacy. Information and opinion-sharing throughout the disability sector is important, but it needs to be free flowing, carefully and clearly articulated, but most of all, much, much more immediate.
For all disabled people and everyone else working towards a better tomorrow for this sector, we need to know what’s going on, where it’s going on, and why it’s happening. How else can we critically evaluate and strategise for the future? We could also rely on what the Ministry, their subsequent officials, and a handful of local leaders and influencers tell us, but what about the views of those outside those circles?
MidCentral: Ensuring transparency and effective change for disabled people
“One of the things that has become very apparent to me and is very clear in my mind is that we’ve got, I would say, decades of not just unmet need in the community but unrecognized need”.
Those were the words of Lorna Sullivan, head of the Connector/Tuhono team in the MidCentral.
Currently, numbers in the MidCentral indicate that 500 disabled people and families have already come on-board the prototype since it’s launch in October 2018. This is, already, a similar amount of people that the Waikato demonstration of Enabling Good Lives has supported, but over the period of three years, not two months. It is clear that the numbers of people coming onto the prototype in the MidCentral are higher than allocated, and on current trajectory, expected to rise again.
Sullivan also urged providers to move away from notions that responses to disabled people’s needs can be standardized.
“We have to shift away from this idea that we are a service”, Sullivan said.
What has become absolutely transparent since the launch of Mana Whaikaha is that providers, for the most part, have been woefully underprepared for the change that the prototype is trying to give to disabled people. This was something that was predicted and has come to fruition, funding gaps or not.
The challenge now, for Sullivan and her team, appears to have become not only about ensuring that they can work alongside disabled people to create better outcomes, but it’s also becoming about taking providers by the hand and directing them on the type of changes needed to their own systems. Furthermore, connectors in the MidCentral haven’t had the ongoing training and development due to the increasing numbers coming onto the prototype, and Sullivan says that this needs to be addressed early in 2019.
Leadership: Lack of strategic, on the ground, by the people leadership
The state of leadership across the disability sector is seriously lacking, and in 2019, this presents perhaps our biggest challenge, both in terms of finding fresh leadership and investing in it.
Also, using social media to demand change from Government and other mainstream agencies for things like access whilst using the term ‘ableism’ is inherently not leadership, and shouldn’t be recognized as such. The increasing discourse and labeling of non-disabled people as ‘ableists’ needs to stop, fast. This point is as equally applicable to this particular challenge of leadership as it is to the previous information talking point.
The biggest problem here is investment, both from a financial perspective and a hands-on perspective. There have been many strongly-willed, capable, and determined leaders that were initially projected to be the big change makers in the disability sector. Some of them have, and continue to do amazing things both in New Zealand and internationally, but it would be fair to say that without some form of financial incentives moving forward, i.e jobs for disabled people where the development and enhancing of their already strong leadership skills takes place, these potential leaders will be forced to look elsewhere and go down alternate avenues where their talents won’t be fully realized in order to find an opportunity that financially rewards them.
This has already proven to be a big loss for the disability sector, and if it continues, it will hamper the efforts of what new support models are trying to accomplish in theory, because as it stands right now, terms like “social investment” and “capability” are areas of the sector that are big on words, but little on action. People need and deserve to be paid for their time, another reason why further investment across all areas of the sector is needed, and potential investment that could see big returns.
Less Hui, More Doi: For the benefit of the people
One of the things Lorna Sullivan raised recently was the deep sense of isolation disabled people and families are feeling from their own community. This is also something that is a familiar conversation point around the leadership tables, and yet we still have this problem.
This isolation is as much a social issue as it is a service issue.
For one, many families don’t know who to turn to for information, for the support that is both hands-on and effective, as well a general understanding of how to navigate the system. People are still going to have to navigate through the disability system in one way or the other to access supports. Connectors are only one part of the puzzle, and even that requires a small amount of navigation and awareness to access in the first place. There needs to be more support and resourcing, not only for the navigation aspect, but also understanding the practical “how to’s” when it comes to managing support budgets, hiring and firing support workers, and employment law.
Simply having such teaching resources available on websites isn’t enough. Because often people won’t search for help until they actually need said help, and this is often at a time when additional, hands-on, responsive, and effective support is most required. My guess, however, would be that many people don’t care about these things. They just want the flexible support options that work for them, owned by them, and directed by them. But let’s be real for a moment, in order to achieve something like that, you have to have a certain amount of knowledge and resource behind you.
Practicing what we preach isn’t just about changing how support is delivered, it’s about ensuring that this support actually addresses not only the current need, but perhaps the underlying needs as well, and a large amount of this requirement is in understanding. To do that, you’ve really got to look at the individual and their unique context, and that’s where you design a support structure that truly works for them. That takes a lot of time, experiment, and often a lot of going back to the drawing board at each individual level, so it’s vital that more investment of time and understanding is implemented across the sector.
It isn’t about investing heavily early, it’s about finding the sweet spot for each individual. For that individual, their lives aren’t a box on a checklist to be ticked off, their lives are uniquely theirs, and they are relying on this sector to listen to, include, and advocate for them.
An audio version of this blog can be found here:
All resources used in the creation of this blog can be found here:
Lorna Sullivan – Thinking and Acting Differently for System Transformation