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 farRecent UK work on IB

Greater sense of control ‘People with learning disabilities in the IB group were more likely than those in thecomparison group to feel they had control over their daily lives, although thedifference 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 ofexisting 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 potentiallystressful 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 fundsMost 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’sNecessary 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 SideIndivdualised 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)