The role of advocacy in an environment of individualized funding: some ideas on safeguarding individualized funding into the future Bruce Uditsky, M.Ed. CEO, Alberta Association for Community Living

A general definition: individualized funding, direct or self-directed payment, self or family managed funding funds negotiated by an individual, family or representative within an limited sphere of who or what is eligible or dictated by a government body or its agent paid directly to an individual, family or representative administered by the individual or an agent to employ and direct their own staff and/or contract with an agency (usually gov’t approved) to provide personalized support to enable an inclusive life according to an approved plan based on a person centered process open to change that will be monitored with the individual/family held accountable to be renewed or renegotiated regularly

My experience – the Alberta experience Personal use of IF for 14 years Alberta has had individualized funding for families of children with disabilities for close to 40 years – universal entitlement that has improved in practice over time Have self-managed funding for individuals with physical disabilities for a few decades – helpful but limited Had largest system of IF for individuals with intellectual disabilities and their families – virtually wiped out today I’ve had the opportunity to view IF practice in other countries – there is much commonality in experience IF is a vital and necessary funding mechanism but it requires extensive individual and systems advocacy The strengths and limitations of IF need to be understood and truthfully communicated

Common Roots of IF Individuals with challenging needs that the service system failed or could not accommodate Frustration with human services and in particular the control they exercised over peoples’ lives, their lack of responsiveness and the failure to create, enable or sustain meaningful lives Self or family determination, the rights movement, empowerment, control of one’s destiny Desire for individualized and personalized supports and a meaningful, inclusive life

Myths and Hype Consumer is a powerful role Funds drive the market, create choice Funding ($) is power, liberates from the yoke services Changing the culture and practice of human services is easy Planning is person centered and creative Plans can be implemented – the expertise, knowledge, means and talent exist

Myths and Hype Values are understood and shared Quality, consistent staff are readily available Everyone has the capacity – to facilitate inclusion, membership, belonging, employment, recruit, train, manage, direct, employ, account, plan, create, innovate, negotiate, determine, adapt, etc., etc. Everything should be individually funded – this equals individualization

What’s been learned Those with capacity, creativity, and an abiding commitment to an inclusive vision, can make IF work – IF is not an equal opportunity option The exceptions are not the rule In the vast overwhelming majority of instances it provides no different a life for people with disabilities, than they experience in accessing traditional human services – people purchase what is available, the human service system adapts, the complexity overwhelms individuals, the false promises become evident Overall incomes are improved for people with disabilities but others gain income

What’s been learned Overall inclusive lives are not more evident Overall the community is not more engaged Independent community infrastructure and resources are not typically created or sufficiently funded – but are essential It begins with promise and some flexibility but this gradually diminishes as government and systems apply constraints, controls and increased bureaucratic requirements in era of increasingly trivial administrative demands in the name of accountability and risk aversion (e.g., one’s home as a shop floor, counting all the wrong things) – systems have a natural, predictable life

What’s needed for IF to be helpful Understand its inherent limits – it does not tap the capacity of community, creativity is not a given, employment is not a given Human service systems are not sustainable or capable of ensuring everyone with a disability has access to a good life Many supports and the right to access should not be individually funded – supports, funding, and responsibility must be built into or enabled within generic community resources There are things money just can’t buy – friends, belonging, being seen as contributing societal member, being needed by others, love

What’s needed for IF to be helpful It is imperative to focus on values, vision, dreams, aspirations, pathways, possibilities, opportunities – first look at what can natural and generic supports are possible and then what minimal service supports are required and adjust continuously Facilitating inclusion is an art – it requires talent, critical thinking, reflective practice Independent community governed Infrastructure and resources for individuals/families – so the benefits of IF can be better realized and more equitably distributed

Ensure resources are there so that IF can be accessed by as many desirous of doing so Resources – Network of experienced users – Leadership Development – Training and education – Mentors – Navigators – Information – materials, publications – Planning and implementation assistance – Recruitment assistance – Assistance with payroll and all related admin responsibilities

Some Safeguard ideas Values based advocacy is essential on an individual and systemic basis Leadership development Community engagement and partnerships Gain and Share knowledge on facilitating relationships Embed individuals in normative pathways over their life-time Individual advocacy establishing a vision, eligibility, negotiation, appeals, legal challenges, agreements, utilization, plans, implementation, guidance, navigation, walk with, changes, address barriers, buffer with system

Systemic Advocacy Ensure flexibility and responsiveness Minimize and contest any increased techno- bureaucratic managerial intrusions Create and sustain effective community resources Engage the community Stay close to people and tell the truth