CENTRE FOR INCLUSION AND CITIZENSHIP

TIM STAINTONCENTRE FOR INCLUSION AND

CITIZENSHIPUNIVERSITY OF BRITISH

COLUMBIA

Lessons from the global experience with individualized finding and self-determination

initiatives

ELEMENTS OF A SELF DETERMINATION BASED SYSTEM

Personal decision making support

Supported Decision Making and Representationfamily and trusted advisors advocacy

Independent planning and facilitation support

Individualized funding

Funder

Funding allocationis based on a PLAN

Contracts

Community Supports and Services

Provider Agencies

Personal Assistants

Commercial/Generic Resources

INDIVIDUAL

Basic IF ModelBasic IF Model

Employs Purchases

PLAN

Models and Variations

Direct Funding

Host Agencies, Fiscal Intermediaries

Fixed Amount (Illinois)

Catalyst funding (LAC)

Microboards, family governance models

User led support models

Personal budgets (UK)  allocation of funding given to users after an

assessment. Users can either take a direct payment, or -while still choosing how their care needs are met and by whom - leave councils with the responsibility to commission the services or a combination of the two.

Individual budgets (UK) funding from multiple sources pooled together for

use by the individual.

OVERVIEW OF RESEARCH

majority of evidence across jurisdiction supports better outcomes (cost/benefit) and higher user satisfaction

US and UK evidence suggests that over a relatively short time cost of IF systems produce increasing cost savings and efficiencies, though in some cases IF is initially cost neutral or slightly higher

Cost savings are dependent on implementation structures and realizing savings elsewhere in the system (i.e. reducing case management)

.

…OVERVIEW OF RESEARCH

Research indicates indirect savings in areas such as health care utilization, crisis etc

IF can be used to support all level and types of disabilities

IF can be applied to most if not all types of services

no notable issues of abuse or misuse of funds

…OVERVIEW OF RESEARCH

support resources to handle employer and/or budget management responsibilities key where IF uptake highest

beliefs and practices of field staff working for government bodies has a strong impact on IF uptake and outcomes

Shortages of personal assistants/support workers significant challenge that can be mitigated by ability to hire family and friends

…OVERVIEW OF RESEARCH

importance of strong policy base upon which to build and promote the use of IF options

focus on creative, innovative use of funds + community and support network development can reduce dependence on paid supports and enhance satisfaction

one study noted improvements in quality of care when workers reporting to end user vs. an agency

Challenges and Issues

IF in isolation of broader support and system change

Transitional funding Unbundling

System Inertia Culture change Resistance from professionals,

government,providers

Unionized Environments Support staff

Staffing Shortages, wage rates, families, crisis cover,

training

Lack of both planning/facilitation support and financial management support hinders both uptake and success (particularly amongst those with ID)

Underfunding

Agencies using IF simply to fund traditional services

Restricting options/stifling innovation Staffing, family/network based management options

‘All in all out’ approaches

Onerous reporting/auditing/oversight

WHAT MAKES IT WORK…

Integrated Structure- Decision making rights and support Planning and Facilitation support (as required) Individualized funding options Governance options

Seeing IF as one tool for an inclusive life- systems should be community oriented not service or funding oriented

Foster and support innovation

Small is beautiful-encourage and support individual and family based models of support and governance Microboards, family governed supports, self

managed supports

‘Good enough’ system of reporting and oversight The ‘perfect’ system of oversight and

monitoring will inevitably stifle innovation and restrict self determination

Personal network development and support (critical if isolated individuals are to benefit)

Encourage user/family led support systems for IF users and families (contracting, management, training, advice)

Support to manage IF

Informed and committed staff (Government/agency etc.)

Flexibility and responsiveness (changing needs, goals etc.)

Back-up systems for support

THANK YOU

DIVERSITY INCLUDES

Tim Stainton, Centre for Inclusion and Citizenship

University of British Columbiatimst@mail.ubc.ca