Notes on the Individualised Funding Coalition conference

Toronto, February 2004

An outside observer’s view

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.

For the observer, there are certain obstacles to overcome, and perhaps mine is the language. The morass of code words, jargon and acronyms that this topic seems to attract can be quite daunting, and leads to some pitfalls. Just take the 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 was a conference in the very best sense, with all delegates participating equally; all voices being heard and valued by the many people there.

The conference opened with a memorable speech by Judith Snow on citizenship. She made it clear that by seeking individualised funding, disabled people are seeking no more than the same rights and benefits of citizenship available to all others, and which are already theirs under the law. It was an effective message, leaving only the question of how to implement it, which was the object of the conference.

I sigh when I hear of ‘empowerment’, but a thoughtful facilitator (Judith McGill) skilfully discussed the important difference between responsibility and authority which is so often lost when this wretched buzz word is used. In this case, the authority of families in the choice and administration of care was contrasted with the much wider social responsibility for the provision of care, and the point was well made. In our own experience, this distinction has been of crucial significance to the quality of life of an individual, and GSA hopes to bring this experience to others. This is an essential step in understanding the value of individualised funding.

It 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 appreciation.

Like 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 lack of physical, human and financial resources. We know the funding resources are there, and the governments know who is in need, so the educational aspect works in two ways. Political action was discussed as a fair and realistic way of educating the government, since many elected officials simply don’t know. Much of the discussion reinforced my previous belief that IF will in fact give the government better value for its - our - money. More people will be served, and served better, by the more efficient distribution of the funds to which they are entitled. But many government officials will not know this unless they are told. A number of people mentioned that they had been told by agency staff that since IF does not exist in Ontario, they cannot apply for it. When confronted by the fact of the existence of IF, the official response is that the present examples are only pilot projects and cannot be interpreted as the government’s acceptance of the system. One wonders how many pilot projects it will take to make this leap.

It was good to hear people saying that, although there was widespread dislike of agencies, there are many good, supportive people employed within the system who will act against policy if necessary in order to serve their clients 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 attend the conference, despite the obvious benefits to the whole community. 

I 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 suggested that priority should be given to the preparation of an information package to be made available, as a right, by agencies to all people who have received a diagnosis of a condition that ought to attract IF to support the individual concerned. Such material must be in plain language, and be much more 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 of websites does not work for everyone. There needs to be a hierarchy of information, from the Ministry down to individual support resources throughout the province, and it must be made available to everyone, without them having to know that it exists before they can ask for it.

Someone made the very pragmatic point that power follows money. Take the money to the individual, and the individual holds the power - a simple enough concept, and one that seems to worry most agency people and all government officials, if we are to believe what we heard. Perhaps agency jobs will be lost, but while there will certainly be a corps of administrators still needed, this is the reality. If the money is not reaching the individuals so they may buy their support services now, it is surely the government’s business to ensure that it does. Someone else brought up the interesting fact that 80% of care funding is spent on administration. Four out of every five tax dollars allocated to care supports the distribution system. Compare this with the most efficient charities that keep the administration costs to around 10%, even with paid employees. It can be done.

A particularly important area of concern was that of outlying and rural areas. It did not seem that there were good answers yet, and much more work needs to be done. No matter what funding system is in place, special needs people in remote areas do not yet have ready access to adequate support services. If an “inefficient” system can be justified anywhere, perhaps it is in these cases, where the high cost of access simply has to be borne to fulfil society’s citizenship obligations to everyone. There were some heart rending stories told in the discussion groups, including some where families had been abused and intimidated by power crazed agency officials who had complete authority in the absence of any alternative or any oversight. Bringing the 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 the families would be greatly reinforced.

Several people remarked that the ministry has no concept of appropriate wage levels for support workers, an issue that is aggravated in the outlying areas, with their lower incomes and higher travel costs than in urban areas. In view of the necessary skills and the level of responsibility that we expect of these people, the wages have to reflect the needs of the people to be served, and the funding therefore must be set accordingly, and this means realistically.

An 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 great care in order to conform to the recent privacy legislation. To what extent can we pass on the names of families? How much information can be shared with regard to those already receiving individualised funding? This latter point was 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 amount of interest, quite passionate in some cases, it seemed to be worth immediate action.

An issue that did not seem to be well covered was that of sustainability. Perhaps it’s because there has been such a big leap made to achieve IF, that taking the next step, to look beyond the lives of the present supporting family, is too much to take in. Yet we have to do it, and there is surely some knowledge already accumulating that can be shared. We know where amazing work has been done in preparing a surrogate family of unrelated friends who love and care for their focus person, but is it yet the lifelong, constant, reliable, unquestioning dedication that we want a family to provide? This is one of the most difficult questions in my own mind. Perhaps the conference wasn’t the place to find the answer, but I keep looking for it.

Some hope was expressed that the new provincial government is more concerned with genuine fiscal efficiency than with political window dressing, and the economic reality of IF may prove to be attractive to them, reinforcing the case for careful political activism.

Getting into the newspapers and the public eye was discussed. We heard that the politicians will be more easily swayed if there is a wider body of public opinion supporting IF, and not just those in need of it. The solution is to invite the press and politicians to IF related events, to meet its beneficiaries, and to offer articles to newspapers so that the public at large will understand that their tax dollars are being used more efficiently when IF is implemented.  As Tip O’Neil once said, “All politics is local”, and that might be a good article of faith for IF proponents. A sad reality is that when the hearts and minds of the public are to be won, economics will probably trump quality of life issues, but to be prepared to present both points of view well is the best way of all to get the IF message across.

On a personal level, I found the conference too long and intense. I needed more time to absorb the information. The environment was not perfect, and sometimes very noisy with animated background chatter. On the other hand, there were many people there for whom the event was a great release from their usual daily routine - something I will probably never know. 

The foregoing 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:

  • Understand 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 addressed.
  • 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 systems.
  • 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 healthy.
  • 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 values.
  • 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 IF.
  • 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 lower.
  • Agencies are using privacy legislation to prevent communication among families.

 Comments 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 minister of finance thinks that nobody in his constituency is interested in the topic. He 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, to provide all this information as soon as the need becomes evident, and in plain language].
  • There needs to be a Citizen Advocacy office – an independent person to advise those who are being stonewalled by government, or even before that stage.
  • The ministry is intimidating people who speak out where group action is contemplated.
  • Disability support is a citizenship issue and therefore a federal responsibility.
  • Local involvement: municipalities, churches (non-evangelical community outreach programs?)
  • Communicate clearly, but when communicating with government, do so in their language.
  • Push for independent evaluation of government programs – don’t let them hire their own consultants to do it. (Another excellent point. I know this one is good).
  • 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 community.
  • How is the success of IF to be measured?

From the discussion of support circles:

  • It is a dynamic process; never completed. 
  • Membership should be by invitation; preferably by the focus person or immediate family.
  • 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, so a 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).

-Andrew Foster