CENTRE FOR INCLUSION AND CITIZENSHIP TIM STAINTON CENTRE FOR INCLUSION AND CITIZENSHIP UNIVERSITY 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 Representation family and trusted advisors advocacy Independent planning and facilitation support Individualized funding

Funder Funding allocation is based on a PLAN Contracts Community Supports and Services Provider Agencies Personal Assistants Commercial/Generic Resources INDIVIDUAL Basic IF Model EmploysPurchases 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 Columbia