System transformation is the language of the day. Most of the people I talk to are up for it - and for good reason.
Change can be tough. It can bring uncertainty, and for many it can be a time of stress. So in this crazy time of review, evaluation, consultation, co-design, tendering and contract negotiation - and the development of the NDIS (National Disability Insurance Service) across the ditch â€“ we need to keep a clear focus on why we are supporting change. What do we want? What do you want?
The good life! Of course.
If we cannot clearly see how proposed change will increase the prospect for disabled people and their whanau to live a more ordinary life, through building relationships and valued social roles, then history will view this time of change as a lost opportunity. There are windows when the opportunity for meaningful change open and our sense is that we have one now. Perhaps the biggest opportunity we have seen for decades. Letâ€™s do it!
ImagineBetter is excited to be a co-founder of the Disability Caucus, a new alliance of people from a wide variety of perspectives across our sector. We are a group that is non-aligned, self-funded and self-selected, which means that we are free to say what we think. What we say has a unique combined wisdom that will be listened to with interest by decision-makers â€“ because of who we are.
The grassroots movement in Australia (Every Australian Counts) which enacted the large-scale campaign resulting in the creation of the social insurance based NDIS, was the inspiration for the creation of the Disability Caucus. They too were non-aligned, self-selecting and self-funding. In New Zealand we come to our season of change from a different place. We are relatively better resourced in our sector than they were in Australia, and we have improved access to services compared with our Australian counterparts. But there are key lessons that we can learn from the NDIS as we think about what it is that may better serve disabled people and their families/whanau into the future.
Top of the list for me are:
â€œsupport me to figure it outâ€
The art of â€˜walking alongsideâ€™ or Independent Facilitation as practiced under a range of banners including the Local Area Coordination work of ImagineBetter (together with AccessAbility and Life Unlimited) is an element that many people have found very valuable in building their good life. The role of an Independent Facilitator is to walk alongside the individual (and whanau) as they develop their vision for a good life and take the steps that will move their ideas from vision to reality. Spending here reduces spend later â€“ and builds relationships and valued social roles.
â€œgive me the money, get out of my way â€“ trust me â€“ and check laterâ€
I support an expanded Individualised Funding approach as a default position. If itâ€™s yours - and you can choose the level of self-management and third party contracted help for the management of your own resources - then you have the opportunity for self-determination. Else, itâ€™s just messing about with ideas of choice. Individualised Funding needs to be a given. And check later - weâ€™re accountable.
â€œFunding decisions should be made for the long term, not the nowâ€
There should be funding certainty over time. The insurance model in Australia is allowing real investment in people, early, that will mean good life outcomes â€“ and less reliance on the State over time. How? An actuarial approach (insurance type model) looks at the lifetime costs rather than the annual budget. It builds a capital fund (as with ACC) that enables it to fund its work over time (certainty) and two things happen: people live better lives, and it costs less over the lifetime of the disabled person. There is acres of data that show this.
Thatâ€™s my top three today. What are yours?
Imagine Better and the Disability Caucus would love to hear your views on what you would like a new and more efficient disability system to look like. All you need to do is e-mail me.
Join the Disability Caucus. Weâ€™d love to see you.
This amazing (& big!) poster was created at the ImagineBetter Assemblies, held in Wellington (as well as Auckland & Christchurch) in November 2015. It visualises what was covered during the two-day assemblies.
Whatâ€™s ImagineBetter up to? What do we stand up for? How do we Walk the Talk?
ImagineBetter enables people to live well now, plan for, and secure the future.
Our work is supported by principles including the Social Role Valorisation (SRV) theory.
â€œTo hold a clear strong vision, disabled people, families and the people who support them need to have a solid understanding of what social inclusion and exclusion looks like. This knowledge encourages people to look beyond the funded support options and encourage exploration in to community and â€˜real worldâ€™ based alternatives. SRV highlights the disadvantages people experience from having â€˜paid peopleâ€™ in their lives and stimulates discussion on how this model came about and how it can be changed.â€
(J. Armstrong, 2014, New Zealand workshop).
SRV teaches people about the importance of valued social roles and therefore the strength in genuine participation/integration for disabled people in â€˜ordinaryâ€™ everyday activities.
As citizens, disabled people have the same rights and responsibilities as all other people to participate in and contribute to the life of the community. We believe that disabled people, with the support and involvement of their families, are best placed to determine their own goals and to plan for the future, either self-motivated or with Independent Facilitation and coordination from people or services of their choice.
So, how do we â€œwalk the talkâ€ at ImagineBetter?
ImagineBetter partners with the Ministry of Health to deliver Local Area Coordination (Independent Facilitation) in the Western, and Eastern, Bay of Plenty, and Lakes regions.
Local Area Coordination
Tena Koutou, tena koutou, tena tatou katoa (greetings to everyone),
The good life is certainly what many of us experience living in such a beautiful part of the world. What makes life good for one person might not necessarily make life good for another. However, we know that for most people there are common elements such as loving relationships with friends & family, a safe & secure home life, being able to make a contribution to our community, having a job, enjoying school, being happy, having enough money, hobbies & interests, and for many people a connection with a higher purpose or spirituality.
If there are some things that make life good then by default there are also some things that tend to make life not so good.
One cohort of people who are often denied or struggle to attain the good things of life are disabled people and their family/whanau. A lived experience of disability can have profound implications for oneâ€™s ability to have a good life.
ImagineBetter is a small organisation whose primary focus is on supporting disabled people and their families/whanau to become clearer on what would make life good (no matter what is happening now) and then support you as you build towards this new future. One way we do this is through Local Area Coordination which is a free support for you to access. A LAC (Local Area Coordinator) could walk alongside you and assist you, as you plan for and work towards building your own personal good life within your local community.
If you would like to know more about how a LAC can assist you personally, or if you have some time and energy to assist others, weâ€™d love to hear from you.
We offer customised training workshops and mentoring to a variety of groups and organisations. You can make an online enquiry about one of the ImagineBetter workshops below:
Towards a Better Life - two-day workshop on the Social Role Valorisation theory
Planning for the Good Life using PATH; MAPS; Visual Planning; Lifestyle Goals; Circles of Support, Friends; Supported Decision Making
Making Change Real - how to manage all the change
Independent Facilitation - a workshop on the art of becoming an Independent Facilitator
Service Design: One Person at a Time - creating truly individualised service options
For more information or to enquire about a workshop, or to see other training options, please head over to our website.
A close up of part of the wonderful poster created at the ImagineBetter Assemblies in Christchurch, November 2015
ImagineBetter Family Prosperity Agenda
We know these things to be true:
Families, friends and personal networks are the foundations of a rich and valued life in the community.
Communities are enriched by the inclusion and participation of all our citizens of all ages, cultures and abilities.
Communities are the most important of environments for providing friendship, support and a meaningful and rich life for all people.
We partner with people to promote what the Good Life means for disabled family members and their families in our communities. Through this partnering (or walking alongside approach), we enable people to access the necessary tools to utilise and sustain their vision of what makes life good for them and we work alongside individuals to identify the goals that support action and traction. Our preference is to reach young families so that they think early and proactively about what it takes to live well.
Our team aims to influence families to hold and pursue their vision of the good life and who in their turn, influence the agencies that are supporting them. This is an important feature for system transformation.
We encourage communities to foster social inclusion by providing ways and examples of how this might happen and we build capacity (awareness, knowledge, skills, tools) through interactive workshops that welcome people who have different capacities, limitations and approaches to learning.
Our work is all about encouraging all members of a family to build their leadership capacities (in their family and in their communities) to design a vision of what makes life good for all members of their family, and to identify the details that secure those arrangements.