Professor Christine Bigby - Implementing individualised funding – Taking account of diversity’

Implementing individualised funding – Taking account of diversity’ Professor Christine Bigby School of Social Work and Social Policy La Trobe University

Background
2009 Roundtable on Intellectual Disability Policy
ACHIEVING THEIR OWN LIVES: THE IMPLEMENTATION OF
INDIVIDUALISED FUNDING FOR PEOPLE WITH INTELLECTUAL
DISABILITY
Edited by Bigby and Fyffe
8 papers and summary of discussion
http://www.latrobe.edu.au/socialwork/schoolstaff/chris.htm
N

Individualised – Person Directed Funding or ?
Different language – programs & terminology
independent Living Schemes - consumer control (physical disability)
self determined – self directed services (developmental disabilities)
consumer directed services (older people)
direct payments – individual budgets (UK & Europe)
cash and counseling (US)
support and choice – Flexible support packages-
Similar philosophies and elements - individual choice & control
The amount of funding is determined by direct reference to the individual and/or family’s specific needs, and aspirations;
The individual and/or their family determine how funds are used to meet those needs eligible for funding. (Stainton, 2009)
Variability re degree of control – direct- via intermediary- notional via service service

Key Characteristics
Separation of functions
eligibility & $ allocation - govt
needs articulation, assessment, planning, prioritisation, identification and negotiation of supports – individual or broker
supports provision - contracted or directly employed - purchased
control over support - individual
Shift of power from supply side to demand side
supply of services no longer dictated by govt funding decisions
supply driven by demands of consumers – contingent on funding

Undermined or Supported by Context
In context of limited and rationed funding
Expose deficits to compete for funding
Restraints caused by amount of funding and availability of support to purchase
Funds only partially meet needs
Forced preferences
Compromises to own needs from imperative to share funding with others to gain adequate support
Disadvantages people with higher support needs
removes hidden cross subsidisation – Gawith Villa eg
Market models only work in perfect markets
Availability & quality of supports to purchase
Biased against some Groups ?
Designed and take up much higher among people with physical disabilities
Older people concerned re administration
Assumes capacity or support to exercise informed choice and control
Benefit most those with strong networks and resources

Evidence so far
Recent UK work on IB
Greater sense of control
‘ People with learning disabilities in the IB group were more likely than those in the
comparison group to feel they had control over their daily lives, although the
difference was not quite statistically significant’ . (Glendinning et al Oct 2008, p. 18
Requires culture shift and new skills
Implementing IBs required major shifts in culture, roles and responsibilities of
existing staff. As with direct payments, front-line social care staff played a key role in introducing people to IBs and helping them through unfamiliar and potentially
stressful changes. Intensive staff support and extensive training and communication activities, supported by levels of ring-fenced funding, are needed. More specifically, priority needs to be given to developing specialist skills in support planning and brokerage, (p 49)
Trad use of funds
Most used funding to purchase conventional support little evidence of use for more innovative purposes as envisaged (Hall, 2009, p.46)
Benefits particular groups
People with physical disabilities and milder intellectual disabilities best placed to ta take advantage

Sine qua non’s
Necessary Infrastructure
Support for people to articulate their claims
quality of independent planning, identify options, time to dialogue and build relationships (Bach, 2000;Lord & Hutchinson, )
Support for people to identify, obtain and manage supports necessary to actualize their claims
$ insufficient alone, need good PCP, brokerage
Role of Broker
‘ as system function and process in which advice, information and technical assistance is made available to individuals who request support to : identify and access needed community services and support and negotiate for and use indivudalised funding’ (Smith, 2003, p295)
Funded to be independent from govt, employed and serving user.
Issues of training, funding, morph into b’cry employment, loss of choice

Mechanisms to provide control over the resources (Stainton, 2007; 2005).
Fiscal intermediaries, micro boards, notional allocations
Broader governance : that is, issues of who controls decision making within the system, not simply on an individual level, but on a broader structural level (Stainton, 2005).
Reference grps, advisory boards, more than tokenism
People with intellectual disability largely left out currently

Program Design Take Account of Variability
Sufficiently flexible to take account of the diversity of people with disabilities and their social situations
Different processes will be needed for different people.
Take account of:
Differences in experiences, capacity to express choice, make decisions
Differences in strength, composition and potential of informal social networks
Differences in complexity of needs
Differences in needs over time
Differences in need for external case management, coordination or monitoring and review
Differences in place.

Frank and Paul
Very similar needs
Long history challenging behaviour. Self injury, restrictive practices
Severe intellectual disability - limited communication or comprehension
Difficulty expressing preferences
Limited life experiences
Most of life in institutional or other congregate care
High support needs
Both live in a distinct social space – family, others with intellectual disability and paid staff
Very different social networks
Paul - close family, know well, strong advocate, own resources
Frank -no close family – no advocate, reliant on paid workers, service organisation
Inequities already clear – Paul lives alone, exercises some choice over day to day life, slowly building acquaintances in community, reducing CB
Frank lives with another resident very similar needs, one of a pair
How can DF work for these men –challenge system in many ways – illustrate complexity behind the rhetoric

Differences in experiences, capacity to express choice, make decisions
Not the activity or outcome but what has preceded - How do you demonstrate participant has made an informed choice based on knowledge and experience of all potential options or preferences have been taken into account
Different types of decisions and choices
complexity, frequency, importance – (moving, occupation, holidays, tea)
different types and depth of support for different decisions
Expose assumptions re proxy decision makers
does family always know best
what about those with no family
how are differences resolved
who mediates risky or dubious decisions
what safeguards exist
Current least restrictive alternative – leaves many without guidance, scrutiny or dispute resolution
Greater clarity re processes and expectations .
Either informal or substitute decision maker – not widely used
Law reform commission -review of substitute decision making

Distributed or Supported Decision Making
UN Principles Articles 1 – Equality before law right to supported decision making
Should be fundamental feature of IF for people with more severe intellectual disabilities - if it is to be true to intentions
Principles to guide such thinking (Cramp & Duffy, 2006):
The assumption that an individual has the ability to make decisions.
Restrictions should only be placed on choice when a person doesn’t understand the options, and their choice places them or others at risk
If possible an individual should select who supports them in choice making.
Different people are used for different types of issues.
A good adviser or agent is someone with a good knowledge of the person, available options, is available when necessary, has no conflicting interests and is available for the long term.
The individual always has the right to be involved and consulted even if someone else makes the decision.
If an adviser or agent acts on behalf of a person the choice is made on the basis of “standing in the shoes of the person” the choice they themselves would make if they were able.

Plans for who makes which types of decisions should be reviewed and updated.
Mechanisms : extend beyond family or service providers
micro boards, circles of support ,
Challenges
develop models
build circles around people who have none or elderly parents
Where does this building work fit into IF developments and guidelines
Ideas from South Australian Public Advocate – more stepped and supported legal framework includes support for those involved in supported or substitute decision making

Difference in complexity and nature of needs supported
More complex than user directed personal care
Not just additional arms and legs for personal care
Less specific types of support – building relationships, opportunities for community participation, occupation, skill development
Understanding person’s communication
Different roles, creating encounters from presence to participation
More left to the discretion of personal assistant
Judgment when to direct or intervene
Less boundaries, practical help, training, guidance
Vaguer role (Askheim, 2003)
Indivdualised does not mean on your own or with one to one worker
Need for micro level planning of support - breadth of skills
Who monitors if PA’s outside of regulatory system
One solution – Swedish Coop – ‘service guarantor’ knows user well, introduces and supports and trains PA’s, additional supervision

Differences in change over time and need for case management, coordination, monitoring and review
Creative patchwork finely balanced and fragile (Wilson & Campion, 2009)
Multiple providers
Who coordinates and trouble shoots when necessary
Which provider takes the lead and bears the cost
Need capacity to deal with the unexpected – health, staff change, absence
Particularly important for those without strong family support
Planning likely an iterative process as experiment with new possibilities
review and monitoring to take account of changed preferences
Danger coordination functions undervalued if reduce resources for direct support.
Take account of different levels of planning
– micro day to day support
- overarching PCP, whole of life – without this danger of rigidity, missing opportunities, and building in changed – rigidity - safe options

Differences in Place
Differences in community and service infrastructure
Ensuring choice will require place based planning as well as individual
Allocations need to take account of additional costs for rural and remote, provision, travel

Only a partial solution
Overall lack of public commitment to disability services in liberal welfare states continues to undermine the rights and opportunities of individuals with disabilities and their families, (Caldwell, 2007,p 56).
Still means tested, resource constrained and limited funding available
Won’t solve short falls – waiting lists – DSR supported accom 1292, community accom, 1095, day time 188 (June 2009)
Need citizens and activists to advocate for change as well as consumers (Spandler, 2004)
Who does it leave out, most impaired, without advocates or family
Success depends on additional elements
Entitlement to support
Social solidarity to build circles and networks of support
Community development – build commitment and local responsibility (Mansell, 2005)
‘ whilst empowering the individual in the control of their everyday care arrangements, cannot deliver the individual and social leverage that a disabled.
person seeking inclusion requires

Build Supply Side Indivdualised Funding a Component not a Competitor of the Broader System.
Felce 2004 & Mansell 2005, argue
Attention to supply as well as demand side via
Population based strategic directions and planning
Need to build and maintain a system of services
Importance and potential of block funded services – something to buy and spot purchase those not on IF
O’Brien emphasizes the necessity of providing the ‘best conditions which will evolve and develop services that offer highly customized, specialized, publicly accountable, collective service provision and assistance’ (cited in Spandler 2004, p 203).
Block Funded Services aren’t a lost cause - PCP individual goals, (sense of what want), Activity planning, (lead life) tailoring support,( right help) activity adaptation and skills teaching (build independence) relationship building (increase social inclusion)

Doubters: Problematic Outcomes
Greater inequality – choice for some and not others
Disadvantage non direct payment users
Interface with the rest of the system access to previous services
Danger of two tier system – one for IF users and one for block funded
Public see exclusion as solved via PA
Shift focus from structural/ environmental barriers to inclusion
Threat to pay and conditions of workers
Challenging principles of collective and universal services. (Ridell et al., 2005; Spandler 2004, Lyon, 2005)

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Professor Christine Bigby - Implementing individualised funding – Taking account of diversity’

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Professor Christine Bigby - Implementing individualised funding – Taking account of diversity’ — Presentation Transcript