Notes on the
Individualised Funding Coalition conference
the observer, there are certain obstacles to overcome, and perhaps mine
language. The morass of code words, jargon and acronyms that this topic
to attract can be quite daunting, and leads to some pitfalls. Just take
word ‘entitlement’, which has acquired an inflammatory meaning for
many. And I
wondered why the event had to be called a “workfest”, when in fact it
conference in the very best sense, with all delegates participating
all voices being heard and valued by the many people there.
My first impression was that
this was a very ambitious event. My second
impression was that with such persuasive and motivated people behind
it, it was
certain to be successful, and I believe it was.
opened with a memorable speech by Judith Snow on
citizenship. She made it clear that by seeking individualised funding,
people are seeking no more than the same rights and benefits of
available to all others, and which are already theirs under the law. It
effective message, leaving only the question of how to implement it,
the object of the conference.
sigh when I hear of ‘empowerment’, but a thoughtful facilitator (Judith
skilfully discussed the important difference between responsibility and
authority which is so often lost when this wretched buzz word is used.
case, the authority of families in the choice and administration of
contrasted with the much wider social responsibility for the provision
and the point was well made. In our own experience, this distinction
of crucial significance to the quality of life of an individual, and
to bring this experience to others. This is an essential step in
the value of individualised funding.
was difficult to take in the whole breadth of subject matter that was
covered, so I tended to focus on things whereof I already had some
so many other human conditions, improvement in the lives of special
needs people is often held back by lack of education, as much as by the
physical, human and financial resources. We know the funding resources
there, and the governments know who is in need, so the educational
in two ways. Political action was discussed as a fair and realistic way
educating the government, since many elected officials simply don’t
of the discussion reinforced my previous belief that IF will in fact
government better value for its - our - money. More people will be
served better, by the more efficient distribution of the funds to which
are entitled. But many government officials will not know this unless
told. A number of people mentioned that they had been told by agency
since IF does not exist in Ontario,
apply for it. When confronted by the fact of the existence of IF, the
response is that the present examples are only pilot projects and
interpreted as the government’s acceptance of the system. One wonders
pilot projects it will take to make this leap.
was good to hear people saying that, although there was widespread
dislike of agencies, there are many good, supportive people employed
system who will act against policy if necessary in order to serve their
better. However, it was disheartening to learn that people had been
warned, if not
actually threatened, by their agencies not to use their funding to
conference, despite the obvious benefits to the whole community.
was surprised to hear from people who had not been aware of IF before
the conference, and I followed this up in the discussion groups. I
that priority should be given to the preparation of an information
be made available, as a right, by agencies to all people who have
diagnosis of a condition that ought to attract IF to support the
concerned. Such material must be in plain language, and be much
than a list of websites where information may be found. The document
must be a
source in itself - a driver’s manual for getting through the system and
achieving results. Not everyone has access to the Internet, so a list
websites does not work for everyone. There needs to be a hierarchy of
information, from the Ministry down to individual support resources
the province, and it must be made available to everyone, without them
know that it exists before they can ask for it.
the very pragmatic point that power follows money. Take the
money to the individual, and the individual holds the power - a simple
concept, and one that seems to worry most agency people and all
officials, if we are to believe what we heard. Perhaps agency jobs will
lost, but while there will certainly be a corps of administrators still
this is the reality. If the money is not reaching the individuals so
buy their support services now, it is surely the government’s business
ensure that it does. Someone else brought up the interesting fact that
care funding is spent on administration. Four out of every five tax
to care supports the distribution system. Compare this with the most
charities that keep the administration costs to around 10%, even with
employees. It can be done.
important area of concern was that of outlying and rural
areas. It did not seem that there were good answers yet, and much more
needs to be done. No matter what funding system is in place, special
people in remote areas do not yet have ready access to adequate support
services. If an “inefficient” system can be justified anywhere, perhaps
in these cases, where the high cost of access simply has to be borne to
society’s citizenship obligations to everyone. There were some heart
stories told in the discussion groups, including some where families
abused and intimidated by power crazed agency officials who had
authority in the absence of any alternative or any oversight. Bringing
funding directly to the families in these cases would quickly bring
about a very
effective transfer of power, and the authority that should reside in
families would be greatly reinforced.
remarked that the ministry has no concept of appropriate
wage levels for support workers, an issue that is aggravated in the
areas, with their lower incomes and higher travel costs than in urban
view of the necessary skills and the level of responsibility that we
these people, the wages have to reflect the needs of the people to be
and the funding therefore must be set accordingly, and this means
interesting issue that was raised a number of times was how useful it
would be if there could be more networking of families and sharing of
information. It seemed like a good idea, but needs to be handled with
care in order to conform to the recent privacy legislation. To what
we pass on the names of families? How much information can be shared
regard to those already receiving individualised funding? This latter
mentioned as being used by the ministry to impede the spread of
knowledge of IF
in the community. The issue seems to be open ended, but given the
interest, quite passionate in some cases, it seemed to be worth
issue that did not seem to be well covered was that of
sustainability. Perhaps it’s because there has been such a big leap
achieve IF, that taking the next step, to look beyond the lives of the
supporting family, is too much to take in. Yet we have to do it, and
surely some knowledge already accumulating that can be shared. We know
amazing work has been done in preparing a surrogate family of unrelated
who love and care for their focus person, but is it yet the lifelong,
reliable, unquestioning dedication that we want a family to provide?
one of the most difficult questions in my own mind. Perhaps the
wasn’t the place to find the answer, but I keep looking for it.
hope was expressed that the new provincial government is more
concerned with genuine fiscal efficiency than with political window
and the economic reality of IF may prove to be attractive to them,
the case for careful political activism.
into the newspapers and the public eye was discussed. We heard
that the politicians will be more easily swayed if there is a wider
public opinion supporting IF, and not just those in need of it. The
to invite the press and politicians to IF related events, to meet its
beneficiaries, and to offer articles to newspapers so that the public
will understand that their tax dollars are being used more efficiently
is implemented. As Tip O’Neil once said,
“All politics is local”, and that might be a good article of faith for
proponents. A sad reality is that when the hearts and minds of the
to be won, economics will probably trump quality of life issues, but to
prepared to present both points of view well is the best way of all to
IF message across.
a personal level, I found the conference too long and intense. I
needed more time to absorb the information. The environment was not
and sometimes very noisy with animated background chatter. On the other
there were many people there for whom the event was a great release
usual daily routine - something I will probably never know.
notes are personal, subjective views of what went on. As
the conference proceeded, I collected many comments from other people,
a few of
which I’ll add below.
Some comments heard in the plenary sessions:
that disabled people are living longer and with a very
different quality of life than we used to expect for them.
- IF needs to cover other
vulnerable users, such as seniors with dementia.
- The inconsistency of policy
application at government level needs to be
- There needs to be
individualised planning as well as funding. (Very good
point for people with limited resources - almost everyone!)
- Publicise success stories.
- The role of agencies has
to change if IF is to work.
- People must come before
- People who have succeeded
must find ways to pass on the good news and
not be fearful of letting out the secret.
- One person believed that IF
is not the answer.
- Competing for money is not
- IF is only part of the
solution - an important part, but not everything.
- The current system still
doesn’t respect the individual
- There is a lack of common
- The system does not respect
the capabilities of families.
- The provincial government
pretends that families are competing for money
as an excuse for denying IF.
- We need a clear definition of
- Possibility of pooling, not
meaning group homes!
- Problems of making IF
function in rural/remote areas. Access to
services, agencies etc.; how to spend the IF once you get it.
- People are receiving funding
but are having to return it because they
are unable to spend it, and their needs are therefore considered to be
- Agencies are using
privacy legislation to prevent communication among
heard in the working groups:
- SSAH is a step towards IF,
but we need to redefine and expand the
meaning of “home”.
- The ministry is program
oriented rather than needs oriented.
- “Needs” means whole
communities as well as individuals.
- Pursue tax credits for small
businesses hiring disabled people who can’t
ordinarily earn enough to support themselves.
- Why is ODSP not indexed to
the cost of living?
- The ministry gives no value
to the parent who relinquishes work and a
career to care for a person with special needs.
- Community Living was started
by parents. Take care when power comes to
the end user.
- If there was feedback from
consumers to the government required under
the present system (as there is in the hospitals) the picture would be
radically different (= accountability).
- A major worry is the
continuity of funding – there’s no way to see the
way ahead, even with a successful IF application in place.
- The new Ontario
finance thinks that nobody in his constituency is interested in the
told a woman to “Go home and be a mother!”
- Parents aren’t being told
about the services that are available. [My
comment was that there must be a public duty, enforced by the ministry,
all this information as soon as the need becomes evident, and in
- There needs to be a Citizen
Advocacy office – an independent person to
advise those who are being stonewalled by government, or even before
- The ministry is intimidating
people who speak out where group action is
- Disability support is a
citizenship issue and therefore a federal
- Local involvement:
municipalities, churches (non-evangelical community
- Communicate clearly, but when
communicating with government, do so in
- Push for independent
evaluation of government programs – don’t let them
hire their own consultants to do it. (Another excellent point. I know
- Freedom of choice. IF isn’t
for everyone. SSAH does work for some people
but it needs work, e.g. it should keep going beyond the home.
- Engage a local collaborator
to promote IF in presentations to the
- How is the success of
IF to be measured?
discussion of support circles:
- It is a dynamic process;
- Membership should be by
invitation; preferably by the focus person or
- How to set it up? Perhaps it
needs to be an element in the IF contract.
- How to do it for more than
one focus person or family? Open ended
discussion that we need to take up later.
- How many people really have
the luxury of dreaming?
- This topic flows into the
possibility of employment co-operatives. This
can develop into worker-ownership (with specialist advisers as needed,
kind of support cluster can grow out of the advisers/facilitators).
Need to see
if HRDC is another source of funding for this.
- There’s a need for a
network to connect support circles to find
opportunities (like employment co-operatives).