IF only: reflections on individualised funding


From the blog of Philip Patston

My intentions to blog each day from the Individualised Funding conference I attended a couple of weeks ago were somewhat thwarted by memory and access to technology. It’s always harder to type away from the old desk.

But, after a week to digest my thoughts, I will hopefully have created a more distilled reflection on this minefield of change happening on a global level in the paternalistic quagmire of disability support.

A CHANGE IN THE BUSINESS MODEL

At the heart of Individualised Funding (IF), called different things around the world (Direct Payments in the UK, Individual Budgets in the US and ‘self-managed’ and individualised services in Australia), is a change in the business model of funding disability support.

The current model funds a benevolent, charitable provider of services. The provider is an expert in looking after disabled people and transfers this expertise to workers through (usually) Government-approved training. The worker is then the provider’s proxy to look after individuals. Apart from needing to be compliant with regulations and have acomplaint process (interesting how similar those words are), the service agency gets funded, no matter the quality of service.

Come on, what would those disabled people know about what they need?

The proposed model of IF funds individual people to either employ their own support workforce or, potentially, buy support services from providers. Simply put, this changes the market for providers, from the Government to individual consumers. It changes the business model from providingcompliant service to quality service.

In any consumer-driven market, if you provide poor quality, the customer walks, metaphorically speaking in this case perhaps. And this creates part of the problem.

THE CONTROVERSY

I was part of starting the first official IF Agency in NZ around seven years ago. For several reasons I bowed out after three or four years, partly due philosophical differences about the Agency’s direction, but mostly due to a frustration with the Ministry of Health’s lack of clarity, see-sawing and risk aversion around IF policy.

My speculations about the reasons for the Ministry’s spectacularly poor performance in progressing IF development, and allowing people to manage the funding for their disability-related support, are:

  • Industry pressure – providers not wanting to lose perceived expertise and contracts for compliance in return for having to compete in a consumer-driven market, because they know they probably couldn’t.
  • Paternalistic doubt and distrust – bureaucrats not believing people could really manage their own support; or that they cannot be trusted with precious public money. In my opinion this is derived from socially disadvantaged employees of Treasury and Health Legal, who wouldn’t know how to engage with a disabled person, even if they had the capacity to relate to someone of a different social strata, and whose notion of one is, as such, probably still based on 1940s stereotypes.
  • Fear of change –that old chestnut. Need I say more.

The irony of course is that disabled people are freely permitted to use welfare/benefit income of their own accord. But it seems there’s a huge skill difference in knowing what to buy at the supermarket – and how to coach someone to dress you, wipe your bum, clean your house or, heaven forbid, how to buy a comfortable wheelchair. These things need true professionals.

THE OPPORTUNITY

Please excuse my cynicism and sarcasm – they are the favourites of my many weaknesses and vices, of which I struggle to let go. And sometimes they make people titter.

The conference was long – three days, which in Hamilton time felt like three weeks. I didn’t make many notes, but those I did take was of the plenary presented by Andrew Tyson, “a health and social care practitioner, based in Brighton, England. Andrew has worked for around thirty years as a manager and from 1999 as a commissioner of health and social care services, mainly for people with mental health issues and for people with learning difficulties. Between 2005 and 2011 he worked for the organisation, In Control, which pioneered self-directed support and personal budgets in the UK. Andrew has published articles in a wide range of journals and was involved in producing many of In Control’s publications between 2005 and 2011.” (Conference programme)

Andrew made the following noteworthy points:

  • There are 430,000 people managing personal budgets in the UK. In a population of 62.3 million, 12 million are statistically disabled, that’s nearly 3.5% of the disabled community. A comparative figure for NZ – 4.5 million, 900,000 disabled – would be 31,000 people on IF. We are probably barely one-third of the way towards that.
  • This uptake of self-responsibility is transforming attitudes in the UK.
  • There is huge scope for a globalisation of approaches and ideas and IF policy should take a rights based approach.
  • The recipe for success for IF is to make it simple.
  • There is a need for community to create support for authorities to make IF happen.

IF ONLY…

There’s much more I could say. But the best thing that could happen is that we recognise the move towards IF in NZ as an extraordinary exercise in social change. So let me apply some social change theory to it, as it seems to be sorely missing.

  • Holding it lightly – This ideology stems from the ability to get an egg to stand on its end, unsupported. To do this you must cradle the egg in your hands, not so tightly as to crack it, but not so loosely as to allow it to fall. By positioning your hands lightly around the egg it will stand unsupported. Applying this to social change like IF, it requires the ability to watch nurturingly over the change, guarding it from crushing restrictions while safeguarding it from failure.
  • Loose and tight – In all endeavours, particularly those which involve fundamental change, some things need ‘tight’ attention and others can be ‘loosely’ monitored. Ironically, most organisations and projects confuse the two. Let’s take vision and outcomes, tasks and outputs. Most organisations, particularly bureaucracies, hold people tightly accountable to tasks and outputs, but loosely accountable to vision and outcomes. This is exemplified in IF policy that has strict (tight) rules about what it can and can’t be used for. There is no attention paid (loose) to the fact that these rules impeed a person from realising their life vision and achieving successful outcomes. This needs to change.
  • The hero’s journey – “Joseph Campbell’s monomyth, or the hero’s journey, is a basic pattern that its proponents argue is found in many narratives from around the world. Campbell held that numerous myths from disparate times and regions share fundamental structures and stages, which he summarized in The Hero with a Thousand Faces:

“A hero ventures forth from the world of common day into a region of supernatural wonder: fabulous forces are there encountered and a decisive victory is won: the hero comes back from this mysterious adventure with the power to bestow boons on his fellow man.” (Wikipedia)

IF is a hero’s journey of sorts, which requires, from individuals and State, the courage to ‘venture forth’ into a ‘supernatural’ world, ‘encounter fabulous forces and win’, and ‘bestow boons’ on others.

  • Cold heaven – In Getting to Maybe: How the World is Changed, authors Frances Westley, Brenda Zimmerman, and Michael Quinn Patton describe how, in blogger Robert Paterson’s words, we experience in social change “non linear dynamics and the unexpected – it does not unfold smoothly. New barriers emerge. Threatened powers fight back, for they too see what is coming and they don’t like it. Resistance is aroused. Things start falling apart. The premise that things will likely get worse before they get better becomes fact not theory. Doubt surfaces, grows, overwhelms – well almost. In this phase the innovator has descended into Cold Heaven (chapter 6).”

Certainly, when it comes to IF in NZ, we are in a deep and bitter Cold Heaven, with human rights appeals and prosecutions demonstrating the threat self-determination poses. Luckily, according to Westley et al, “sometimes at the darkest moment … ‘Hope and History Rhyme’ (Chapter 7). What seemed like a local, personal quest suddenly connects with larger forces. It turns out that the timing is right, the moment has come, though not through planning, not through rational goal setting, not through careful management or forceful control but by being in the right place at the right time.” (Paterson)

CONCLUSION

I’m naturally impatient and can see the benefits of change easily. IF has many obvious benefits, which I have experienced in the 20+ years I’ve been managing my own support. Objectively though, I understand the fears, doubts and losses that will balance the benefits.

My biggest hope is, in this time of Cold Heaven, where we wait for the evidence that Hope and History Rhyme, that we be kind to each other and be prepared to have the long and difficult conversations that Adam Kahane explains are needed to solve tough problems, with everyone in the room.

Many thanks to Te Pou for its consumer conference attendance sponsorship.

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