Structures to Support
Self-Determination and Individualized Funding
In the context of the new 'enterprise' of
individualized funding, working
towards a common language and some common definitions
can make it easier for us to communicate clearly within our
own constituency, with the existing service system, with families, advocacy
associations, and government.
is value in being clear about the things that we think define
Individualized Funding / Direct Funding and the things that can be supportive
to IF, but don't necessarily define it. If
we can agree on the defining elements, we are free to develop the support
elements in many forms and in their own time.
The support elements may represent specific projects or initiatives, but
they don't define IF.
This way, we can be clear about the things that are
essential for us to ensure, and the things that may be helpful and strategic,
but which can and should be the focus of local experiment, variation, adaptation
that (probably) define IF – ‘the bottom line’:
the person or family
is at the center of developing a plan, and presenting that plan and a budget
proposal to a funder (usually government)
with planning, creating a proposal, and presenting the proposal is
independent of the funder and independent of potential service providers
money comes directly into the hands of the
person or family, or a personal non-profit entity such as a
the person or family
(or personal non-profit entity) has direct
control over day-to-day expenditures
the person or family
(or personal non-profit entity) is
that can be supportive to IF but don’t define IF:
Structures (organizing forms) that
individuals and families might use to help them manage personal resources
A variety of
independent 'second-level' (or 'underlying') support
(described in some detail below)
The goods and services that individuals
and families purchase with the money that they control
Government and other funders
strategies, ideas, examples
look at each of these elements in detail:
- Structures (organizing forms) that
individuals and families might use to help them manage personal
resources could include:
person or family operating independently
person operating with the assistance of their family
person or family operating with the assistance of an informal personal network
or circle of support
person or family operating with the assistance of a personal non-profit entity
(e.g. a microboard)
How individuals or families set themselves up to manage IF resources
does not define IF. Any of these
forms may be useful, and it's helpful if there can be many variations, local
experiments, and options to accommodate individual capacities and needs.
Allowing (in fact, welcoming) variation in this area allows for the
inclusion of people with a wide range of needs within a broad IF model.
People who wish to be independent in managing their personal resources
can do so, and at the same time they can work in solidarity with people who
may need, or wish to have, a great deal of assistance in managing their
- A variety of 'second-level'
(or 'underlying') support
in creating and presenting proposals to funders
assistance with inviting and nurturing personal support networks or 'circles'
with day-to-day operations (e.g. staffing, payroll, etc.)
How second-level support services are
organized does not define IF. These
supports can be provided by individuals, cooperatives, non-profits, incorporated
businesses, etc. Any of these forms
may be useful, and it is helpful if there can be many variations, local
experiments, and options to accommodate individual capacities and needs and
community capacities and needs.
of the ways we've seen second-level support services organized include
independent practitioners, microboard associations, etc.
struggle a bit with the awkwardness of the term 'second-level supports', but
have not as yet found a more descriptive term that does not limit
consideration of this important set of supports to one specific form.
One parent described what she was looking for as a 'personal agent'; this
comes closer, but may still be too specific.
the principles of IF, it would be desirable for individuals and families to have
direct access to the funds that would allow them to select and purchase
second-level support services - absolutely in the operational stage, but also in
the planning and development stage. It's one more way of ensuring that independent planning is
- The goods and services that
individuals and families purchase with the money that they control,
housing, transportation, adaptive
personal care assistants, staff
professional services (such as PT, OT,
... and many others
How people organize to provide these goods and services does not define
IF. These things can be provided
by individuals, cooperatives, non-profits, generic community services,
incorporated businesses, etc. Any
of these forms may be useful, and it's helpful if there can be many
variations, local experiments, and options to accommodate individual
capacities and needs and community capacities and needs.
- Government and other funders, who
in turn may create or require:
accountability and evaluation structures
... and many other elements
How government organizes to support individuals and families with direct
funding, and meet the requirements of good stewardship and public
accountability, does not define IF.
may deliver support through its own administrative structures,
quasi-governmental corporations, area agencies, non-profits, etc.
Any of these forms may be useful, and it's probably helpful if there
can be variations, local experiments, and options to accommodate local community
capacities and needs. It is
critical that any and all of these structures be as free as possible of
conflict of interest and inherent role conflicts.
- Underlying and
All of these things are
desirable and useful, but they do not define IF. There are many things that we all hope for as
we pursue this path: greater involvement on the part of the broader community,
powerful examples, a commitment to learning and sharing ideas, democratic
structures, services and supports that are strategic and powerful and
adaptive, a spirit of inclusion, and many others.
A possible set of
implementation structures and a development strategy
we can agree on what constitute the defining ‘core’ elements of IF,
and what may be helpful (but not defining) supports and structures, we can explore
a variety of development and implementation strategies that might support a
successful IF initiative in a given
jurisdiction. If there is something about this that we discover isn't
working, it can be changed or discarded. If
someone thinks of something that can be incorporated that will make it better,
it can be incorporated.
are the structures (elements), as best as we can describe them:
- The person (or family) who is the
potential recipient of direct funds
This person may be operating independently, or
may be supported by friends, family members, other helpful allies, or a personal
- Sources for assistance with
planning and negotiation,
independent of government and potential service providers
It is desirable if the individual or family has direct access to the
funds that would allow them to select and purchase their assistance in
planning and preparing a proposal to funders
- Someone who can receive the proposal, and
who has the power to say 'yes'
order for the person receiving the proposal to have the power to say 'yes', s/he
must be attached to a body that actually has the money for IF.
would definitely be helpful if this person were not conflicted about IF 'versus'
other approaches to funding.
- A body that actually has the money for IF
It would definitely be helpful if:
were not conflicted about IF 'versus' other approaches to funding.
think that it
might be also helpful if:
were separate from government.
were 'in' and 'of' the community.
were governed by the people and families who were prospects for and recipients
are many possible ways of structuring a body like this, including consumer and
family cooperatives, community non-profits, community trusts, etc.
- A body that has the money for IF and
the existing system of services
would definitely be helpful if:
had a legislative mandate, including a clear mandate for change in the direction
were powerful enough to move resources from the existing service model to an IF
model (as one writer observed about this, "if it had within it the engine
We think that it would also be helpful if this body:
enough to capture and redirect savings, including those resources that are
presently spent within government.
degree of separation from government, so that it could secure the changes it
made (so IF couldn't be dismantled by government administrative action).
considerable governing input from the community.
are several ways of structuring a body like this, including a quasi-governmental
corporation, crown corporation, etc.
would help if the the body that has the resources
and mandate to deliver IF were closer to the community and were separate from the
largest body - the one that contains all the resources and is the most likely to
carry elements of the 'old culture' for some time.
think it would help if the largest body (the body that contains all the resources) were
separate from government but close enough to incorporate the resources that are
currently being expended within government.
definitely helps if this body is mandated to shift resources away from
the existing system and towards IF.
most places we visit, all of the elements described above (except for the
individual and family) are within government or within the existing
provider system. This creates many tensions and internal conflicts, especially
concerning the movement of resources from the existing system to an IF model.
encourage a parallel
development of many 'on-the-ground' community initiatives and simultaneous work on
the larger policy and support system. Strategically,
it would be most helpful if local IF initiatives could go forward with the support
of the larger system, without having to wait for the larger system to find its
© 2003 David and Faye Wetherow !