Thursday 15 February 1996

Advocacy, Consent and Substitute Decisions Statute Law Amendment Act, 1995, Bill 19, Mr Harnick /

Loi de 1995 modifiant des lois en ce qui concerne l'intervention, le consentement

et la prise de décisions au nom d'autrui, projet de loi 19, M. Harnick

Legal Assistance of Windsor

Rose Voyvodic, executive director

Windsor Essex Community Advocacy Network for People with Physical Disabilities

Dean La Bute, chair

Gregory MacKinnon; Denise MacKinnon

Citizen Advocacy Windsor-Essex

Joyce Zuk, executive director

Stuart Tait, vice-president

Dan Frimer, member, board of directors

Terri Grant-Galli

Susan Phelan

Norma VanDuser

Association of the Physically Handicapped, Windsor and Essex County

Katherine Webster, executive director

Ralph Evans, member

Canadian Mental Health Association, Windsor-Essex County branch

Pat Hayward, assistant executive director

Vince Carruthers, acting manager, rehabilitation services


Chair / Président: Martiniuk, Gerry (Cambridge PC)

Vice-Chair / Vice-Président: Johnson, Ron (Brantford PC)

*Boyd, Marion (London Centre / -Centre ND)

Chiarelli, Robert (Ottawa West / -Ouest L)

Conway, Sean G. (Renfrew North / -Nord L)

*Doyle, Ed (Wentworth East / -Est PC)

*Guzzo, Garry J. (Ottawa-Rideau PC)

Hampton, Howard (Rainy River ND)

Hudak, Tim (Niagara South / -Sud PC)

*Johnson, Ron (Brantford PC)

*Klees, Frank (York-Mackenzie PC)

*Leadston, Gary L. (Kitchener-Wilmot PC)

*Martiniuk, Gerry (Cambridge PC)

*Parker, John L. (York East / -Est PC)

*Ramsay, David (Timiskaming L)

Tilson, David (Dufferin-Peel PC)

*In attendance / présents

Substitutions present / Membres remplaçants présents:

Caplan, Elinor (Oriole L) for Mr Conway

Clement, Tony (Brampton South / -Sud PC) for Mr Tilson

Duncan, Dwight (Windsor-Walkerville L) for Mr Chiarelli

Johns, Helen (Huron PC) for Mr Hudak

Marchese, Rosario (Fort York ND) for Mr Hampton

Clerk / Greffière: Bryce, Donna

Staff / Personnel: McNaught, Andrew, research officer, Legislative Research Service

The committee met at 0930 in the Ramada Inn, Windsor.


Consideration of Bill 19, An Act to repeal the Advocacy Act, 1992, revise the Consent to Treatment Act, 1992, amend the Substitute Decisions Act, 1992 and amend other Acts in respect of related matters / Projet de loi 19, Loi abrogeant la Loi de 1992 sur l'intervention, révisant la Loi de 1992 sur le consentement au traitement, modifiant la Loi de 1992 sur la prise de décisions au nom d'autrui et modifiant d'autres lois en ce qui concerne des questions connexes.


The Chair (Mr Gerry Martiniuk): Good morning. This is the continuation of the standing committee on administration of justice hearing on Advocacy, Consent and Substitute Decisions Statute Law Amendment Act, Bill 19.

The first submission we have this morning is Legal Assistance of Windsor, Ms Rose Voyvodic, executive director. Welcome. You have one half-hour, which you can use as you see fit. That includes questions, however, and I'll cut you off at the end of the half-hour. Proceed.

Ms Rose Voyvodic: Good morning. Legal Assistance of Windsor, which was founded in 1974, is a community legal clinic sponsored by the faculty of law at the University of Windsor and funded by the Ontario legal aid plan. Our reason for asking to appear before your committee today stems from an ongoing interest in the topics of advocacy, consent to treatment and substitute decision-making. Legal Assistance of Windsor, or LAW, as it's known locally, provides legal and social work services to low-income members of the communities of Windsor and Essex county, many of whom are described currently as vulnerable in the Advocacy Act. We also provide public legal education in the community, based upon demand and need. In the last two years, for example, LAW staff engaged in numerous workshops and presentations to various individuals, groups and agencies, largely stemming from community interest in the development of this legislation.

We have many serious concerns with the bill before your committee. Our submissions, however, only address the repeal of the Advocacy Act and the amendments to the Substitute Decisions Act. We thank you for the opportunity to comment on this legislation and trust that the comments of our agency, together with the presentations you'll be hearing from local organizations, will be considered in your deliberations.

First, I'd like to speak to the repeal of the Advocacy Act, which in our submission is the most significant change brought about by Bill 19. This act, which is barely one year old, as you know, aimed to provide advocates to vulnerable people who required assistance in asserting their rights. Additionally, advocates empowered under this legislation had other powers derived from the Substitute Decisions Act and the Consent to Treatment Act in the sense that they acted as rights advisers. In cases where persons alleged to be incapable were to be deprived of decision-making powers regarding their person or property, there was a function for advocates under those pieces of legislation. All these concepts -- that of the advocate, rights advice and rights adviser -- in our submission are fundamental to protection of Ontario's most vulnerable members of society, and all these concepts are abolished under Bill 19.

Our understanding from the communiqué of the Ontario Ministry of the Attorney General from November 15 of last year is that the government views the Advocacy Commission as an intrusive and bureaucratic government agency. In our submission, the intrusive qualities of the system exist only to assist those vulnerable persons who may be incapable of defending against potentially enormous intrusions, such as court-ordered guardianship, and arrest and detention for purposes of court-ordered assessment, without the minimal protection of rights advice.

We question whether it is necessary to repeal this legislation without substituting a less intrusive, effective alternative system of advocacy to provide rights advice to persons about to be deprived of the right to make important life decisions about their person or property because of an alleged incapacity. We are particularly concerned that this system of advocacy is being removed at a time when demand for services to existing organizations is high and the future of organizations such as community legal clinics is uncertain.

With respect to rights advice, there are numerous functions of the advocate under the Substitute Decisions Act, including but not limited to notifying and explaining to a person the certificate of incapacity and the legal rights surrounding this step, and explaining the significance of court-ordered guardianship and one's right to oppose the application for same. All these functions of the advocate are abolished under Bill 19.

Other examples of rights advice contemplated under the Substitute Decisions Act which are also abolished include notifying a person that a notice of termination of statutory guardianship has been issued; meeting with the person subject to the hearing of an application to court for temporary guardianship; notifying a person that a temporary guardianship order has been made without notice, and explaining the effect of the order and the right to apply to court to terminate the guardianship; meeting with a person alleged to be incapable where a restraining order is sought to assist in implementing a court-ordered assessment; and meeting with a person alleged to be incapable where an order for arrest and detention to provide a court-ordered assessment is made.

Please note that even though the opportunity to receive rights advice in these circumstances has been removed, there is no corresponding amendment made by Bill 19 with respect to the powers that were given to the Ontario Court (General Division) to make various orders relating to financial or personal guardianship, and also relating to arrest and detention, even where a person has not yet been found to be incapable of managing his or her affairs.

We question the fairness of a system where a person is not given information by a rights adviser required to assist the person to understand the issues affecting him or her, and enabling him or her to seek advice, legal advice if necessary, and to assert his or her rights before an order is made.

The rights information system created by Bill 19 in our submission applies only in very limited circumstances. These are basically related to informing a person that the public guardian and trustee has become the statutory guardian and that a person has a right to appeal; also, informing a person that an application for court-appointed guardianship of property or the person has been made.

It is not appropriate that rights information be given by the parties seeking to be guardians or the office of the public guardian and trustee. The availability of independent rights advisers, who will meet in person with the vulnerable person, would ensure that rights advice is being properly delivered.

We agree with the submission already made to you by the Advocacy Centre for the Elderly that a duty counsel system could be arranged where rights advisers are paid on a fee-for-service basis. That would restrict the cost of the service without restricting access to advice and access to justice.

I'd like to also address the issue of who may be witnesses to powers of attorney under Bill 19. We are aware that Bill 19 has not removed the provisions relating to powers of attorney for personal care and property, which we view as beneficial improvements created under the existing legislation to the legal regime governing incapability and incapacity.

However, we are extremely concerned that the prohibition against children of the grantor of a power of attorney, even where those children stand to benefit financially from the transaction, acting as witnesses has been removed. In our submission, this provides and creates opportunities for exploitation and even abuse by children wishing to gain control over a vulnerable parent's estate. There appears to be no sound reason to remove this prohibition, and in fact we can see no basis for it when it is common sense and very well established in law that a beneficiary under a will, for example, may not be a witness for the very purpose of preventing abuse. We are concerned that serious potential for harm is created by the removal of this prohibition.

There is also, relating to witnesses to powers of attorney, language in Bill 19 repealing sections of the Substitute Decisions Act which require witnesses to signify that they have no reason to believe that the person signing the power of attorney is incapable of giving a continuing power of attorney for property or a power of attorney for personal care. We do not understand the basis for this change and are concerned that this check on potential abuse is removed. The minimal requirement that a witness indicate that there is no reason to believe incapability is present would seem to provide some protection against an incapable person signing such a document.


With respect to who the suitable guardians of the property and of the person are, we are concerned about some of the themes running through Bill 19 which relate to the role of the public guardian and trustee, and also with respect to the role of paid service providers. Currently under the legislation, service providers are prohibited from being appointed as an incapable person's guardian of property or the person, unless that caregiver is the incapable person's spouse, partner, relative, guardian of the person, attorney for personal care or attorney under a continuing power of attorney. While this prohibition continues generally, Bill 19 does allow for persons who provide care or residential social training or support services for compensation being appointed, and not the public guardian and trustee, where there is no other suitable person who is available and willing to be appointed.

Again, there are many serious potentials for abuse created by these amendments. How can a paid service provider order and receive payment for additional services for a person under their guardianship without being in a conflict of interest? The concept of "fiduciary" would seem to apply in these situations, as it would in common law. The potential that a vulnerable person has for challenging any decisions after they are made is extremely limited. It would seem to make more sense to prevent the abuse or prevent the potential for abuse rather than provide for an opportunity to redress them later.

While we agree that the public guardian and trustee should only be appointed as a last resort, we would argue that it is extremely inappropriate for paid service providers to be appointed. We urge the committee to evaluate a more appropriate solution to this problem, which we would suggest would be to continue to enable an independent body, such as the public guardian and trustee, to act as a substitute decision-maker for people who have no other suitable, willing person to act for them. The paid service provider would then take direction from the substitute decision-maker rather than playing both roles.

With respect to the power of attorney for personal care, this creature of the existing legislation -- which is continuing, we're pleased to say -- was long awaited and much needed in this province. However, we view the changes under Bill 19 to the validation and confirmation process which trigger the exercise of this power as potentially dangerous.

The current system puts in place certain protections against abuse of the power of attorney for personal care. Currently, in order for an attorney to exercise power upon a person becoming incapable, that attorney must submit two assessments proving incapacity and a guardianship plan. The public guardian and trustee is also used as a substitute for the court in confirming that the attorney may now exercise the power. Under Bill 19, the attorney may exercise authority under the power as soon as he or she has reasonable grounds to believe that the grantor is incapable. There is no requirement that the attorney inform the grantor that he or she is now acting as substitute decision-maker unless a grantor has written that requirement into the power of attorney for personal care, which would require some foresight on the grantor's part. Thus, a grantor may be unaware that personal decisions are being made on his or her behalf in order to take the necessary steps to revoke the power given.

It is necessary, in our submission, to amend the Substitute Decisions Act to require that notice be given by an attorney to the grantor that the attorney believes the grantor is incapable of making personal care decisions and that the attorney is acting on the grantor's behalf under the authority of the power of attorney for personal care.

With respect to potential access to confidential information being provided to third parties, Bill 19 provides that regulations may be made permitting access to this information by applicants for guardianship, which is a category, in my submission, which could include anybody. However, no duty to maintain confidentiality is attached to this right of access.

There's also a power given in Bill 19 to create regulations addressing the right of assessors acquiring relevant confidential information, and while we understand that may be necessary in order for an assessor to complete a capacity assessment, we are concerned that access to this information is, it would seem, going to be provided without authorization from either the person concerned, his or her attorney, a court or someone authorized under the Mental Health Act.

Again, on the subject of the role of the public guardian and trustee, in Bill 19 there's a repeal of the current sections of the Substitute Decisions Act which provide for the public guardian and trustee to act as a substitute where a statutory guardian ceases to act or where it is necessary to prevent harm.

The amendments under Bill 19 provide for the substitution of the public guardian or trustee in this regard on a temporary basis if the public guardian or trustee elects to do so, where a statutory guardian dies, becomes incapable or resigns. There is no requirement that the public guardian or trustee so act and there is no requirement that the public guardian or trustee act to prevent harm. This, in our submission, creates a void which needs to be filled.

Under the current Substitute Decisions Act, the public guardian and trustee may apply to a court for temporary guardianship of the person and receive an order for 90 days where notice to the person concerned is provided, but only for seven days in urgent situations, where no notice is given to the person concerned.

Under Bill 19, there is the possibility of a 90-day order without notice being created. In our view, this is an unreasonably long time for a person to be deprived of the right to make decisions for himself or herself and appears to have no corollary or analogous time period elsewhere. Under family legislation, under the rules of court relating to injunctions, for example, the time period is much shorter, and we would suggest that a maximum of 30 days or some reasonable alternative between seven and 30 days be struck to use in that situation where it is an urgent situation.

The use of confinement, restraints and monitoring devices is also addressed under Bill 19 in that it removes the section of the Substitute Decisions Act requiring that a guardian set forth in the guardianship plan an indication that restraints, confinement or monitoring devices may be used on an incapable person. The current requirement is that restraints should not be used unless it gives the incapable person greater freedom or to prevent serious harm, and that requirement continues. However, all guardians would have the power to consent to the use of restraints whether or not they were ever contemplated by the guardianship plan. In our view, that could lead to some abuse, whether intentional or unintentional.

The use of electroconvulsive treatment is currently prohibited in the form where it may be used as aversive conditioning under the Substitute Decisions Act. Bill 19 removes this prohibition and does not appear to set forth any control mechanism such as a requirement that a court order be obtained to guard against the potential for abuse.

Finally, the so-called Ulysses agreements under the power of attorney for personal care, which under the former legislation could be tailor-made, so to speak, to suit the needs or wishes of the person granting this power, have been removed under Bill 19 and a standardized agreement to intervention is created.


We understand that there may be a practical reason for standardized agreements being used, in the sense that they may be documents more easily used by health care practitioners etc, but we're concerned that there is no measure of input, at least with respect to what the grantor can state in this power of attorney for personal care. It's also set out in a prescribed form, and that sets out the circumstances in which force may be used and the right to use force. Because of the standardized nature of the prescribed form, it appears that these powers may not be deviated from.

Also, with respect to the so-called Ulysses agreement, there is no requirement in Bill 19 that a guardianship plan be filed or that rights advice be given. The power comes into effect when the attorney believes that the person is not capable. Again, there is that extreme potential for a person not being aware of what is happening. Once again, it is urged that some system of advice be provided, on a fee-for-service basis, prior to an agreement carrying such serious potential repercussions being signed.

In conclusion, we are making these comments today to this committee recognizing the tremendous effort which was put into enacting the legislation under amendment as well as the concerns raised by health care practitioners and service providers. We urge the committee to bear in mind the level of consultation undertaken in the prior process. Many vulnerable people put countless hours of thought and deliberation into grappling with the complex balancing of interests required in enacting legislation which protects rights while at the same time providing for the orderly administration of society.

We would also like to add that while we have not chosen to comment on the amendments created by the Health Care Consent Act, we share the concerns already made to you and put forward in the submission of the Advocacy Centre for the Elderly and its submission to this committee on February 7 in Toronto. Thank you.

Mr Rosario Marchese (Fort York): Thank you, Ms Voyvodic, for your submission.

Ms Voyvodic: You're welcome, Mr Marchese.

Mr Marchese: See how we relate to each other so well.

I found your presentation very thoughtful and I want to say that a number of the submissions you've made have been raised by quite a number of different groups, and you seem to share the same concerns. You make a number of useful points and suggestions as to how we might solve some cases of problems. One of the points you make here at the end is, "Again, it is urged that some system of advice be provided, on a fee-for-service basis, prior to an agreement carrying such serious potential repercussions being signed."

The point you make here is, how do we balance "interests required in enacting legislation which protects rights while at the same time providing for the orderly administration of society"? Because that's what the government seems to be interested in, how do we facilitate making sure that people get the care they need quickly? We understand that and we all agree with that. At the same time, our objection on this side is that for the most part we think people need to have greater protection and need to have those rights being given by somebody. The point of it is, once you've eliminated the Advocacy Act and the rights advisers, you eliminate an important tool.

Now the government says this is institutionalized advocacy, it's not good. We should find other forms to give that kind of advocacy. We think you can't find another form and that these people need that authority to be able to intervene. Your fee-for-service might be able to do it. I think something needs to be put in place if they eliminate that, but I'm not quite sure whether we've convinced the government members that that needs to be put into place.

The Chair: Mr Klees.

Mr Frank Klees (York-Mackenzie): I'll defer to Mr Parker.

Mr John L. Parker (York East): Thank you very much for your comments. There are a number of points I'd just like to respond to. First, you made the point that, in your view, the government took the view that the existing legislation was intrusive so the government was taking these steps. I want to assure you that the government didn't just cook this up on its own. We have received literally thousands of telephone calls and thousands of letters; 80,000 phone calls to the public guardian's office and 40,000 letters making the same point, that they find this intrusive. Many newspaper articles have made the same point. The Windsor Star this week endorsed the changes we're making on the same basis.

Let me just respond to a few of the other points. In point 3 you indicate some concern about the removal of a prohibition against children signing as a witness to a power of attorney, that it creates a conflict of interest because it creates the possibility that someone would benefit. There is still a prohibition against the attorney, the one receiving the power, acting as a witness. That is still in the statute. The common-law rules of conflict of interest still apply besides. So that hasn't changed under the proposed bill.

You make the point in point 7 that the guardian doesn't have to explain to the person who is under guardianship what is being done. I want to refer you to section 66 of the existing act, not the bill but the existing act, which addresses that point dead on. I won't go through it with you, but section 66 coupled with section 68 of the existing act -- and these sections are not being changed in this respect -- covers off that particular point.

Ms Voyvodic: In my point 7 with respect to preventing harm? Which? Sorry.

Mr Parker: That the guardian need not explain to the incompetent person that the guardian has taken over and will be making decisions; that point is addressed in the existing legislation and is not being amended.

Mr Dwight Duncan (Windsor-Walkerville): You made a number of submissions, particularly with respect to the Substitute Decisions Act. One of the themes that seems to be underlying the amendments both to the Substitute Decisions Act and the Consent to Treatment Act is the notion that family members and care providers can be entrusted. Virtually all of the proposals you've put forward put conditions or restrictions on this. Your submission is very clear, and we've heard this before.

My question to you relates to your practice and your experience in your practice in these situations. Can you share with us an overview of the kinds of situations you've observed where in fact families or other trustees or guardians aren't in fact necessarily acting in the best interests of a vulnerable person or somebody who has had to give up the power to make decisions.

Ms Voyvodic: I think examples of these situations have been really well documented, numerous submissions made when the advocacy legislation was being contemplated. The report of Dr Lightman with respect to a different piece of legislation relating to residential care homes documented the existence of some issues right here in Windsor with respect to nursing care homes.

I think the philosophy or the ideology that is visible in either piece of legislation is clear. On the one hand, as you are saying, there is a notion that trust may be extended to these members of the family or members of the community. On the other hand, there is a view that, while in the best of all possible worlds that is something to be fervently hoped for and wished, there is a reality where that is not always the case.

In striking a balance and providing for the kinds of concerns that are expressed with respect to intrusiveness or with respect to bureaucracy even and numbers of forms to be filed etc, it seems like there must be some way of striking a balance while recognizing that a society can be valued or recognized -- and I'm going to mangle the quote from Winston Churchill or Socrates, whoever said that it's how you treat your disadvantaged or your vulnerable people while at the same time recognizing that there is a need to not only protect the rights of these vulnerable people but also to protect them from abuse.

The Chair: Thank you very much for your submission.



The Chair: Our next submission is the Windsor Essex Community Advocacy Network for Persons with Physical Disabilities. Dean La Bute is the chairman. We have one half-hour allocated for your submission, and you can use it as you see fit. You may proceed.

Mr Dean La Bute: Good morning, Mr Chairman and members of the standing committee on administration of justice. My name is Dean La Bute, and I'm chair of the WECAN organization.

Before I get into my presentation, I would like to challenge the members of this committee to spend a few minutes in the shoes of a disabled person. What I have brought with me today are 16 pairs of special glasses from the Canadian National Institute for the Blind which simulate different eye conditions, so that you may have a taste of what more than 38,000 Ontarians experience every day of their lives. I would very much like the members of this committee to have the opportunity to experience this for a few minutes. Your cooperation in this matter would be most appreciated, Mr Chairman, you and your committee members.

The Chair: A fine suggestion. We will try to experiment with those.

Mr La Bute: All right. I would ask that you try to read something. I ask that you try to write your name on a piece of paper. You will see the unique experience that you will experience. I will also bring to your attention that throughout my presentation I ask that you leave the glasses on for periods of no longer than five minutes, otherwise it will have an adverse effect upon the breakfast you had this morning, and you'd rather not experience that, I'm quite certain.

As those are being circulated to you, ladies and gentlemen, I want to address the issue of why my organization is here today, once again appearing before this committee, and why this time we are withholding our written brief to you. I think a Latin phrase most eloquently addresses the issue: Quid pro quo. When the government of the day provides to the more than 38,000 blind and visually impaired Ontarians copies of your bills in a format that's accessible to us, be it in print, Braille or on tape, we in turn will comply with your request and submit to you our written submission pertaining to Bill 19. So today I will speak to that issue.

The Windsor Essex Community Advocacy Network is a grass-roots, non-profit, non-government organization. It is comprised of physically disabled individuals from Windsor and Essex county and approximately 30 organizations that provide services to the physically disabled. I, for example, represent on this organization the Canadian National Institute for the Blind. Other member organizations, for the sake of informing you, are the Victorian Order of Nurses, the Canadian Hearing Society and many other such organizations, which are voting members. It is worth noting and informing you that the majority on the council are consumers, physically disabled individuals.

We also have as members of our organization resource representatives, and we have sitting as resource people but non-voting members representation from the hospitals, the boards of education, the Ministry of Health, the Ministry of Community and Social Services and the city of Windsor social services department. As you can tell, we are an organization that broadly represents the disabled community and those who provide services to the physically disabled.

When the advocacy legislation was first brought forward by the then NDP government, we appeared before this committee at that time and did in fact make a written submission to this standing committee. In that brief, which is a part of your Hansard record, we articulated our support for the Advocacy Act, the Consent to Treatment Act and the Substitute Decisions Act. Our position on that has not -- and I stress has "not" -- changed.

We feel that Bill 19 turns a blind eye and a deaf ear to the plight of vulnerable people in Ontario. The fact remains that it absolutely seems to sweep aside the Advocacy Act and the components of that act, because from the point of view of vulnerable people, and in particular the physically disabled, we looked upon December 10, 1992, as a day of reckoning in that through the proclamation of the Advocacy Act, vulnerable people in Ontario were given equal status, were provided with a level playing field with the rest of society.

For far too long, vulnerable persons have been marginalized, ignored and have been looking from the outside in and knocking at the door to become equal partners, have equal status within society at large. In our opinion, the Advocacy Act opened that door and allowed us in. Bill 19 throws us back to the dark ages with the repeal of the Advocacy Act.

Advocacy and the plight of the poor and the disabled and the vulnerable is not new in this century, was not first addressed by the NDP government or the Conservative government prior to that, but it goes back for centuries. The Dutch-Jewish philosopher Benedict Spinoza, well-noted in the 1700s, a student of Descartes, clearly articulated to the authority of the day that it was not within the ability of individuals or groups of individuals to provide proper care and assistance to the poor and those in need of help, but rather it was incumbent upon society as a whole. Today, the mechanism in society that has the means, the ability, the resources to coordinate and provide that safety net is the government of the day.

I ask that you keep in mind that the Conservative government under Mr Bill Davis commissioned a report that in fact did address this issue, the Fram report. The following Liberal government under Mr Peterson also commissioned a report, the O'Sullivan report, and that once again clearly identified and brought forward viable means of addressing the issue of the plight of vulnerable persons in Ontario. Then the NDP government finally acted upon these successive reports and brought into law, as I said, on December 10, 1992, the Advocacy Act and the accompanying pieces of legislation.


What those pieces of legislation meant to us was that they empowered vulnerable people with the right to make decisions that affected their lives and have the final say. Through the assistance of an advocate, they were empowered to see that their wishes were carried through. Through the implementation of the living will, all Ontarians were provided with the opportunity to determine in advance how they wish in the future, upon being required, that their health care needs and personal needs would be handled so that there would be peace of mind. Peace of mind is welcomed by all members of our society. It does not matter whether you're vulnerable or if you're disabled or a senior or frail or constricted to bed due to a long illness; everyone deserves and seeks that peace of mind. Bill 19 eliminates that peace of mind for people who are vulnerable in Ontario.

Therefore, I ask that this committee reconsider its decision to appeal the Advocacy Act. You see, under the Advocacy Act, the formation of the Advocacy Commission empowered individuals through its membership, because once and for all, vulnerable people were not being told by others what was best for them, but rather they were put in the position of power to make that determination themselves. When you lose that ability, which is taken for granted by so many, it's very difficult to regain it. The formation of the Advocacy Commission and its mandate to educate, to train and to provide the means by which the issues that have not been addressed in the past would be fairly addressed is exactly what was needed and is still needed.

As for the other components of Bill 19, we have sought legal advice on these issues and we confirm what has been presented to you by other groups over the course of these hearings -- the Advocacy Resource Centre for the Handicapped from Toronto, David Baker in particular -- that there are adequate liabilities and questions within the components of the amendments proposed that there could be grounds for a charter challenge. Our organization would do whatever was necessary to support any group or groups of individuals or organizations that would seek to enter into such a challenge.

As for advocacy, it is not a privilege; it is a right of vulnerable people. We are concerned about many of the provisions that are outlined in Bill 19. The withdrawal of rights advisers: we are of the opinion that rights advisers, as mandated under the Mental Health Act, should not be limited to psychiatric facilities but should be available in all institutions to avail people of their rights.

A person arrested by the Ontario Provincial Police today is advised of their rights before they are taken into custody. Why should vulnerable people receive any less? The only thing that we are guilty of is having a disability, and that, I assure you, was not by choice. If we had the opportunity to pass that challenge or that chalice on to someone else, I think many of us in our heart of hearts would, but that is not reality. The reality is that 16% to 18% of the population of Ontario has a disability. The reality is that in 19 years from now, according to the government of Canada, one in four Canadians will have a disability. The reality is that in the next 10 years the number of people over the age of 80 in Canada, and therefore in Ontario, will double. The need for advocates and rights advisers is increasing dramatically, not disappearing.

I ask that you reconsider the decision to repeal the Advocacy Act. If it's still your intention to do so, make sure you have something in its place that will meet the needs of the vulnerable persons today and in the foreseeable future, because we are talking about your brothers, your sisters, your parents and possibly your children, if not the person sitting to your left or right.

I, for example, became blind in a period of 18 months, between the ages of 37 and 39. It was not in my plans. It altered my life dramatically, and it can happen to anybody. I, like you, believed it would happen to someone else. Well, it happened to me and it can happen to you.

As for advocates, another organization I've been involved with, Citizen Advocacy, will be presenting later today and will bring forward to you stories of elderly people who have been put into hospitals and given power of attorney to children who have emptied bank accounts, sold off property, all in the "best interests" of mom or dad. There is case after case after case of this. Elder abuse takes place, therefore there is need for advocates and rights advisers. We have shelters today for battered women and their children; that takes place by partners and husbands. The person most likely to batter an elderly mother is her son -- not some stranger, not some neighbour, but her son. So there is a need for advocacy and rights advisers.

I understand that you've received a procession of professional organizations coming forward and saying everything is quite all right and that they wish not to be bound by statute or regulation or guidelines, but rather, their own colleges will set up standards that will provide the protection necessary for vulnerable persons. To that I say, with all due respect, bunk.

The fact remains that these health care professionals, the ones who have vested interests, are looking for expediency and not necessarily first and foremost the individual in front of them, because of financial constraints being placed upon them.

Please remember the plight of our blood system in Canada today and that fiasco of the Krever inquiry. That was all under the auspices of these health care professionals and their colleges of standards and guidelines that led to this fiasco in Canada. Time and time again, this is repeated. We must learn from these experiences and empower individuals with disabilities, vulnerable persons, with the ability to speak for themselves. Ladies and gentlemen, listen to those who speak from the heart and not from professional vested interests.

We thank you for your time.


The Chair: Thank you, Mr La Bute. I should clarify something. This committee to date has not seen fit to restrict in any manner the method of presentation, except for time, of course. I just want to make that clear.

Mr Tony Clement (Brampton South): Thank you very much for your presentation, Mr La Bute. You had a lot of poignant comments to make. I would just like to agree with you when you said in your presentation that advocacy has existed for hundreds, if not thousands, of years and that advocacy was a vibrant sector in Ontario before the Advocacy Act, during the Advocacy Act and after the Advocacy Act. Perhaps you were here; we just heard from Legal Assistance of Windsor, founded in 1974, and judging by the introduction to their remarks, they seem to have done a wonderful job in the sector, representing legally and in other capacities persons who are vulnerable in our society.

Where we have a disagreement with the previous government is how best to deliver advocacy services. We don't disagree that advocacy services are necessary. We have all heard the tragic stories that have been expressed at this committee, and that's just the tip of the iceberg. No one on the government side would say that advocacy services are not necessary. It's a question of how to deliver those services to make it as effective as possible.

You talked a lot about empowerment in your remarks and how the Advocacy Commission is part of that empowerment. But is it not better to empower through individual empowerment, individual responsibility, and also, as Father O'Sullivan mentioned in his report, the moral empowerment as part of the moral duty we all have as human beings, individual responsibilities to assist those who are vulnerable?

Mr La Bute: Mr Clement, you've raised some excellent points, but the fact remains that volunteers and individuals, as Mr Spinoza pointed out, are limited in their individual abilities and knowledge and expertise. For example, I'm quite certain that if you wanted to purchase a diamond bracelet for your wife, you would not ask the Chairman for advice on that. You would go to a gemologist. At some point in time you require the advice of a professional to deal with a situation. I'm not excluding the role of volunteers or of individuals or family members from advocating on behalf of, with the compliance of, a vulnerable person, but the fact remains that we have accountants who assist us with accounting, we have lawyers who assist us with legal matters. No one individual can address all situations, but individuals who are trained in advocacy may assist the designated family member or the individual in having their wishes fulfilled.

Mr Clement: So training might be an area where --

Mr La Bute: Absolutely. Training and coordination, and as for having advocates throughout the province, I would suggest to you that there's no reason to reinvent the wheel. You could very easily have advocates situated working out of the district health council offices. There'd be no conflict of interest and they in turn would be in the community organizing, teaching, educating individuals and organizations such as ours on the roles of advocacy and being an advocate and rights adviser.

Mr Clement: Thanks for your input.

Mr La Bute: You're welcome.

Mr Duncan: Dean, good morning. There are already examples of that: the Psychiatric Patient Advocacy Office in psychiatric institutions, which met with tremendous resistance when it was first introduced, and now, I think it's agreed, works very well.

You mentioned placing advocates in district health council offices and spoke about an issue I wanted to raise, that is, the coordination of advocacy and volunteers, as well as our view that there would be no consistent policy. I wonder if you could expound on those views for us and on other ideas you might have in the absence of the Advocacy Act as we know it today.

Mr La Bute: The absence of the Advocacy Act would create a void out there. There would be no coordination of efforts to advocate on behalf of vulnerable persons. Much like any organization, there has to be coordination so that the left hand knows what the right hand's doing and so that people are given correct and proper advice in a timely fashion through a mechanism such as the Advocacy Commission or, as I understand proposed, a non-profit organization that may be set up; so long as it is there to provide that information in a timely manner to vulnerable persons.

Mr Duncan: So coordination and training efforts potentially could be provided there.

Mr La Bute: Absolutely, because that is what's necessary. A person's adult children or siblings or even adult parents have the best of intentions nine out of 10 times; there's no question about that. But they're ill equipped to deal with situations they're not familiar with. If you are an accountant, I will not ask you to remove my appendix; I would go to some medical practitioner who is skilled in that. No less should be done when it comes to advocates. People require the training, coordination and the upgrading so that the information they impart to an individual is current, relevant and to the point.

Mr Marchese: First of all, I want to thank you for putting us through the exercise of trying to imagine how difficult it is to be in your shoes. We often forget that, and that's part of our problem as government every now and then in not addressing the needs of those who are more vulnerable than the rest of us. That exercise I think is important.

Second, on the whole issue of the Advocacy Act, I was quite taken by your comment that December 10, 1992, was a day of reckoning as the day of giving you equal status, a day that was very important for you because you were brought in and not left out. It was very symbolic and meant a lot in terms of what the Advocacy Act and the commission could do. They've taken that away. This government is saying, "Advocacy is necessary, but the government shouldn't be doing it." Well, if the government doesn't do it, who will? If we don't empower individuals through the commission as a government-instituted setup, what power do they have? The government says, "Oh, training is what we need." How do we do that training? Who's going to do that training, and for whom and what power do these individuals have? These are the questions that leave me a bit puzzled about what they're recommending. They recommend nothing; that's our problem. We don't know what they're going to do.

Similarly, with the Employment Equity Act they said, "We're going to have an equity plan." We don't know that plan. They've repealed the Employment Equity Act. We don't know what that equity plan is all about. So we're in the dark, like everybody else.

Mrs Marion Boyd (London Centre): Thank you very much for coming and for sharing with us as you did. You act as a community advocate and work very hard on behalf of people. Is it your opinion that volunteer advocates can ever have the kind of ability to stop abuse from happening when it's happening, to ensure that people's rights are respected if they have no standing, if they have no official backing and no legal existence?

Mr La Bute: I would use the analogy of advisory boards. It's like being invited to a steak dinner but not being able to partake. Without the authority given to advocates, with proper supervision and guidance, you are unable to intervene where necessary and take the necessary steps to protect vulnerable persons. That is what we are talking about: the ability to follow the direction given by a vulnerable person and to act on that person's behalf and have the authority in statute to carry out that mandate.

The Chair: Thank you, Mrs Boyd. Thank you, Mr La Bute, for your most eloquent presentation today.

Mr La Bute: Mr Chairman, thank you very much. I welcome this opportunity, and good day to each of you.



The Chair: The next submission before the committee is from Greg MacKinnon and Denise MacKinnon.

Mr Gregory MacKinnon: Thank you, Mr Chair. Our submission has specifically to deal with subsection 66(12). I'll just start.

Honourable members of the standing committee, we thank you for allowing us to address you here today. We are here as parents and we have lived in a world that, fortunately, few parents see. Our daughter, Katelyn, suffers from severe self-injurious behaviour, and we don't use the word "severe" lightly.

In late 1992, when it was clear that Katie was not responding to the usually effective methods of dealing with her SIB, we were forced to make decisions that few parents must make. We could restrain her physically for 24 hours a day, with straitjackets and tie-downs. We could chemically restrain her and risk organ damage and other side-effects that neuroleptic and anti-psychotic drugs cause. We could place her out of the home, or we could use the SIBIS, the self-injurious behaviour inhibiting system.

We decided to use the SIBIS. It was prescribed by Katie's paediatrician, a caring and knowledgeable man who treated her for all the usual childhood conditions in addition to her self-inflicted wounds. The SIBIS delivers a small shock to the fatty part of Katie's thigh when she hits or bites herself. The shock is localized to the thigh and is more startling than painful.

Had Katie been born 20 miles to the east, and subject to the provisions in Bill 108 and Bill 109, we have no doubt that today Katie would be totally incapacitated by restraints, she would be sedated into complete inactivity, institutionalized, or worse. Instead, Katie is a happy, healthy 11-year-old with severe autism.

To better understand what would lead parents to make a decision like this -- to use an aversive device like the SIBIS -- and to put that decision in context, you should be aware of Katie's life so far.

Katie was diagnosed with autism at about two-and-a-half years of age. We were of course devastated. But she was happy and healthy and we thought we could help her function at her best with the help of supplemental programs and supports. It was immediately clear that Katie would have many of the stereotypical behaviours like hand flapping, rocking and infrequent eye contact. We learned to accept those behaviours while trying to help her develop her potential strengths. We knew we would have to be resourceful in recruiting professionals to help Katie, in the fields of mental health, education, medicine, physical therapy and speech and language.

We would like to relate some of the therapies we've tried and the interventions to help Katie navigate better in this world. Some of them did help her to a minor degree, some of them did not. None of them hurt her directly. Some were before the onset of her SIB and some after.

We took Katie to holding therapy twice a week for about two years. Holding therapy is based on the theory that the mother-child bond was somehow broken and that forced holding would help repair that bond. Holding therapy has since faded as the demand for efficacy data has increased. At about the same time, we heard about sensory integration. It seemed to us that this could be a real help to Katie. If in fact she was being bombarded with sensory input, SI could help desensitize her, thereby allowing her to make better sense of the world. We took her to a registered occupational therapist trained in sensory integration for over a year. Neither of these therapies benefited Katie very much, if at all.

We hired a private gymnastic coach, who worked with Katie at least two times a week for three years. This did help Katie develop gross motor skills, coordination and strength.

Between the ages of three and seven, Katie had three speech and language pathologists who worked with her on various types of communication, including sign language, facilitated communication, pointing and gesturing, picture identification and portable computers with voice synthesizers. Katie always had the ability to pull us by the arm and point to what she wanted, but we wanted to expand this ability so that other people would understand what she wanted.

We had Katie in play therapy and music therapy, with so-called normal peers.

We tried Katie on Ritalin, on the advice of a neuropsychologist who herself was a high-functioning autistic. That trial kept Katie awake and agitated for 24 hours.

Katie was enrolled in a cross-categorical classroom with higher-functioning kids so she'd have good role models. It was in this classroom that Katie began having aggressive episodes, and as the school year went on, the episodes got more intense and more frequent. We took Katie to the University of Michigan child psychiatric clinic for about a year, hoping that Dr Luke Tsai's staff could help us find a reason for the aggressions and a way to help Katie control them. The treatment there consisted mostly of facilitated communication and a regimen of Anafranil. The facilitated communication was fruitless, as Katie would never use it at home, and the Anafranil made Katie more agitated.

We looked into allergies as a possibility for Katie's worsening behaviours, possibly an environmental allergy or food allergy. The environmental allergist told us we were in the wrong pew if we thought Katie's aggression and self-injury were a result of something in her environment. We decided to try a yeast-free diet, thinking that it couldn't hurt and maybe it could help. We were wrong. That diet led to an eating disorder that still rears its head from time to time.

We found that Dr Bernard Rimland was recommending megadoses of vitamin B-6, with magnesium and a natural substance called DMG, as a possible remedy for self-injurious behaviour. Not so with Katie. Dr Rimland later told us that behaviour worsens only in about 3% of the children. Katie was unfortunate enough to be in that 3%.

Just before Katie's seventh birthday, her self-pinching and wrist-biting accelerated dramatically. She also started slapping herself in the head more and more often. At first, we were advised to ignore these behaviours, as paying attention to them might reinforce them. That made sense to us. The problem was, it didn't work. Katie would pinch, bite and hit herself even when alone, so attention-getting didn't seem to be the motivation for these increasingly dangerous behaviours. While we were trying to find a reason for Katie's self-destructive behaviours, they were becoming more and more ingrained and we were losing our little girl.

By sheer accident, we found that Katie would hit less, albeit not much less, if she wore a hat. She started wearing a hat constantly and would not go without it even in the summertime. Shortly after she starting wearing the hat, she started hitting harder and faster, as if to defeat whatever protection the hat was providing. She then grabbed a hood that was unzipped from the jacket and wanted to wear that over the hat. Then we saw the same process of the hitting becoming harder and harder. When the hat and the hood together were no longer protecting Katie, we reluctantly bought her her first helmet. Shortly thereafter, she would hit the helmet with all her force. Our hearts broke to see Katie bashing the helmet that she depended upon so much. She couldn't live without the helmet, but she wasn't living with it either.

We were learning what is meant by restraint dependence. Katie's SIB was worsening, even as we added more restraints. She was now wearing stiff arm restraints that didn't allow her to bend her elbows so that it would be harder for her to hit herself, but they also denied her the ability to feed and toilet herself.

We were still looking into physical reasons for Katie's SIB, putting her through CAT scans, MRIs, X-rays and blood tests. All of these tests showed that Katie's only physical problems were self-inflicted.

In addition to looking into possible physical reasons, we took Katie to Western Michigan University psychology clinic, where Dr Patricia Meinhold, a clinical behavioural psychologist, evaluated her and began working with us on behavioural approaches to Katie's SIB. That relationship continues to date, and Dr Meinhold is now a paid consultant for the school district as well.

Wanting to know more about current medications used to combat SIB, we made an appointment with Dr Leonard Piggott, a well-known psychiatrist who worked in the field of autism for 30 years. Dr Piggott reluctantly informed us that there was no effective drug for the behaviours. He could only offer anti-psychotics and sedatives. We later tried Benadryl and Catapres at Dr Piggott's suggestion. It turned out that Katie's reaction to almost every drug is the opposite of the desired effect.


By late 1991, Katie's helmet wasn't serving its purpose any more. She was hitting it hard enough to break off most of her hair, resulting in large bald spots and abrasions at the back and sides of her head. Katie even smashed the shell on one helmet with the force and intensity of her blows. Her eyes were constantly blackened and swollen and she had bloody, open sores on both of her cheekbones. Her wrists were bitten down to the bone and her upper arms had divots from where she chewed the skin.

The bandages we applied to her arms just became more targets for Katie, as she chewed through them. The arm restraints also lost their usefulness, as Katie could bite into her upper arms, and banging her head on walls, door jambs and tile floors would take the place of her own hits. When both arm restraints and helmet were in place, Katie started biting her knees and ankles. There just wasn't any way to protect every inch of Katie from herself.

In February 1992, we were at our wits' end. Katie was alternating between living on a two-inch-thick gym mat in our living room and a padded, sectioned-off section of her classroom, being carried to and from the bus kicking, hitting, screaming and biting by as many as four people. The school had used gentle teaching and worked from books like Progress Without Punishment for well over a year, and now it seemed all we had accomplished was delaying the inevitable.

One day, the school called to say Katie was out of control again and they were afraid she might do permanent damage to herself. We knew this was serious, because Katie's school would never admit they couldn't control her. We picked her up from school wrapped in a blanket and drove directly to Ann Arbor and admitted her to the child psychiatric ward of U of M Hospital. That was the first night Katie ever spent away from home, and it tore us apart.

At about 9 o'clock that evening we called to see how Katie was doing and were informed by the nurse that they had given her 25 milligrams of thorazine and she was sleeping. Apparently, there was fine print in the admissions form that allowed them to use their discretion on medication without consulting us.

Katie was still groggy from the effects of the thorazine at 2 o'clock the next afternoon. When we asked what the plan would be for finding the root of Katie's SIB, we were told only that, "Here at U of M we medicate, and we medicate aggressively." There would be no behavioural plan, no plan to enhance communication, only medication. We didn't want Katie sedated into submission, so we had her released.

For two years, we had tried the proven methods of extinguishing Katie's SIB. We tried positive reinforcements, we blocked hits, we redirected Katie's attention from the self-abuse. Katie was always overly praised when she wasn't self-injuring. The problem was that those times were becoming fewer and of shorter duration. Katie would hit and bite herself for six hours at a time, stopping only when her strength was completely depleted, but the slightest noise or movement, even the dog walking by, would start the cycle all over again, day after day after day.

In the summer of 1992, we hired tutors to work with Katie on a daily basis, hoping that the consistency might help her get herself together before the school year started. But Katie's self-injury now had a life of its own, and it was taking over hers. She could no longer bring herself to go outside and play on her swings and trampoline that she once cherished. She could make it only as far as the patio, where the urge to bash her head into the brick wall of the house overcame her. Sadly, we sent Katie back to school that September in much the same condition that she left there the previous June.

By October 1992, Katie was hitting her head and face at a rate of 5,500 times per hour. Her wrists and upper arms were festering sores. Katie was refusing to walk at all, having to be carried wherever she went. She was back in diapers, undoing two years of toilet training. Katie was eating about every third day, refusing even treats in between. She had lost six of her 54 pounds and her ribs showed through her skin. Sleep only came to Katie when she was completely exhausted and then only two or three hours a night. A daily chore at our house was to soak Katie's blood-drenched nightgown in bleach.

When giving Katie a shower in the evening, my wife would roll up her pantlegs and stand in the shower with her to prevent her from slamming her head into the tile while I tried to wash her and clean her wounds.

My wife and I watched helplessly as Katie's physical and mental health deteriorated to the point that it endangered her eyesight and even her life. It was like watching our sweet daughter get into a terrible car accident every day.

At the end of October we decided to try the SIBIS. We knew of the SIBIS for about a year, but always thought we would find some less extreme way of dealing with Katie's self-injury. When we made this decision, we were well aware of the ramifications. We knew that reasonable people would disagree with us. We were sure the anti-aversive faction would come out of the woodwork to condemn us.

Katie would get no services from the state of Michigan, as there is a directive prohibiting aid to families who use the SIBIS. Of course, we knew that the school district would not allow it in the classroom, even though their own consultant, Dr Peter Holmes from Eastern Michigan University, later told them that it was the most humane thing they could do. But we had to help Katie, because she had lost the ability to help herself. Her SIB was consuming every waking hour.

The SIBIS trial took place on the last weekend in October 1992 at Western Michigan University psychology department. Dr Patricia Meinhold and some of her graduate students volunteered to conduct this trial.

That three-day weekend changed Katie's life, and ours. Katie immediately responded to the SIBIS. The two-hour drive home from Kalamazoo at the end of the weekend was amazing. Katie smiled, looked around and ate snacks the entire way. We hadn't seen her smile in what seemed like a year. Katie seemed as if a tremendous weight had been lifted from her.

In the next few days, about 99% of the hitting stopped. We later started using the SIBIS for the arm and wrist biting, and that too stopped almost immediately. Katie's face, wrists and arms were healing and she was eating and regaining her lost weight and she was sleeping through the night. My wife and I were overwhelmed. It was so wonderful to have our Katie back. We thought she was gone forever. We can now sleep through the night without hearing the sickening moan Katie used to make as she bit her wrists and arms through the night and the terrible slap, slap, slap that would inevitably follow.

It has now been more than three years since we started using the SIBIS and Katie is injury-free, her hair has grown back and she is healthy and happy, as you can see from the front of this. Katie no longer wears arm restraints, bandages or helmets, and she only wears hats or hoods when the weather demands it, just like the rest of us. But the scars Katie carries from those days are a constant reminder of how horrible and cruel life can be to a little girl.

We aren't here to say Katie's life is perfect now. She still has many serious deficits, both social and cognitive, and the tendencies towards SIB still appear from time to time. Katie has many obstacles ahead of her, but with the freedom from the SIB that the SIBIS provides, she can concentrate on overcoming them, instead of the obstacles overcoming her.

Finally, it's obvious that Bill 19 won't affect Katie or our family. We are here now because there is now, or will be, a Katie in Ontario, and she'll deserve the best quality of life her parents can give her. There is, or will be, Canadian parents who will have to face the decisions we faced. There won't be many. Our family is the only one we know of in Michigan, but there will be one or two, and it would be a shame if that Katie was denied effective treatment by a well-meaning government trying to protect her.

If in the course of these readings you come upon people who refer to themselves as advocates for children or advocates for the disabled who oppose the decisions we've made for our daughter, please ask them if all the so-called non-aversive treatments combined have a success rate of 100% in stopping self-injurious behaviour. When they answer no, please remember Katie's story and think of the beautiful face on the front of this submission.

My wife and I again thank you for allowing us to address you here today.

The Chair: Thank you, Mr MacKinnon. We have three minutes each caucus.

Mr Duncan: Thank you for your presentation. I don't have any questions.

Mrs Boyd: Thank you very much for coming and for sharing that with us. It takes a lot of energy to do that. I'm curious about the prohibitions within the state of Michigan and in your school district. Do they still pertain? You are still having to use this on a private basis?

Mr MacKinnon: The SIBIS is with Katie in school now, after negotiations, and the state still has a directive prohibiting aid to families who use the SIBIS.


Mrs Boyd: Can you tell me on what basis they put that directive in place?

Mr MacKinnon: I don't remember the wording they used, but it's an aversive treatment.

Mrs Boyd: They prohibit aversive treatment.

Mr MacKinnon: Yes, they prohibit it.

Mrs Boyd: One of the suggestions that has been brought to us in the past is that perhaps, given that there are very few people who are shown to be helped by this kind of treatment, the option might be to have a process whereby the kinds of other treatments have all been tried and can be shown, to a court or to a capacity and capacity board, that they have not worked and that then there is that check and balance. Do you think that's a reasonable position for a government to take?

Mrs Denise MacKinnon: Within a time frame.

Mr MacKinnon: Yes, it depends on the time frame. Katie didn't have that long. Had the process been, say, a three-year process, plus appeals that the state would do or whatever, Katie didn't have that long.

Mrs Boyd: No, it would have to be a shorter process, but you did now about it for about a year before you tried it, so there would have been a period of time in there for you to look at that as a possibility.

Mrs MacKinnon: Which we did.

Mr MacKinnon: Right. We knew about the SIBIS for a year, but Katie's self-injury had been going on for two years, so we had ruled out --

Mrs Boyd: Tried everything.

Mr MacKinnon: -- a lot of the methods earlier because they were just standard methods that worked for most kids.

Mrs Boyd: The problem for us is that we have had psychologists appearing in front of us who seem to believe this should be generally available to lots of people. We certainly had one yesterday in London who uses this in his office on a regular basis and seemed to think it was unreasonable for there to be any kind of prohibition against this. I gather you really believe that this should be available as a last resort in cases like yours, rather than generally available for behaviour control.

Mrs MacKinnon: Right, and with our daughter, it's a prescription from a doctor. You can't just go to Radio Shack and buy it.

Mrs Boyd: No, no one was ever suggesting that, including the psychologist, believe me.

Mrs MacKinnon: Some people don't realize that it is a prescription.

Mr MacKinnon: It is not a device to be used for hand-flapping or rocking back and forth.

Mrs MacKinnon: Life-threatening behaviours.

Mr MacKinnon: I don't think a parent would allow that. I give parents more credit.

Mr Klees: Thank you very much for your presentation. Perhaps you could, for the benefit of the committee, just give a very brief description of what this procedure does and how it works.

Mrs MacKinnon: If Katie should inflict, hit her head, bang her head, we have a remote and she wears a little box on her thigh. We say, "No hitting, no head-banging," and we press the buttons and she gets a half a second shock on a 9-volt battery. We don't even know why it works for her, but it stopped the cycle and she even welcomes it. She even hands me her leg set because she doesn't wear it all the time, and wants it on her leg. It prevents her from --

Mr MacKinnon: If she's in an agitated state, she'll pick it up off the desk and hand it to us.

Mr Klees: And have you felt this shock yourselves?

Mrs MacKinnon: Yes.

Mr MacKinnon: Oh, certainly, more than she has.

Mr Klees: Could you compare it for us? What would it feel like?

Mrs MacKinnon: Like a light socket.

Mr MacKinnon: It's less than-you know, when every kid puts their finger in a light socket, it's less than that.

Mr Klees: Okay, we've had presentations from a family whose son benefits from faradaic stimulation. The story is very similar to yours. As you know, the previous law in this province restricted that use and this bill allows that to be used. I'd like to get your thoughts as well, because we have had presentations before this committee from advocates who oppose this and would like the previous law to stay in place and in fact, in their presentations, refer to this as cattle prods. I take personal offence at that terminology. I'd like to get your reaction to those who call themselves advocates for vulnerable people, but choose to use that terminology in this context.

Mr MacKinnon: I think it's very divisive, especially in light of the fact that we have more in common with those people than we have differences with them. We have this one difference with them and Katie is the beneficiary of this one difference and we get called names. We've been called worse than just using a cattle prod. It's a shame it has to come down to that. Of course, we take offence at it, but we've learned to live with it and we probably will have to live with it for a while.

Mrs MacKinnon: It's so rare that a child would develop this extreme behaviour. A lot of these people are passing judgement and they don't know us, they don't know Katie, they don't know what treatments we use, they don't know what doctors we've gone to. How our child suffered. We agonized over this decision, because we knew the ramifications, we knew these people would come after us, but we had to save our daughter's life.

Mr MacKinnon: And we knew that what I think is called ARCH here -- no services from them, we knew that. We knew all of the ramifications. We knew that Katie would not get services, that we wouldn't get respite, that there would be no help from any government agency over there.

Mr Klees: So the prohibiting legislation in Michigan certainly caused your daughter a great deal of pain and agony over a number of years.

Mr MacKinnon: It did and it cost her in time, pain, and it's still costing her in services that she should be eligible for.

Mr Klees: We commend you for your courage.

The Chair: Thank you, Mr and Mrs MacKinnon. Not only is your love for your daughter, Katie, evident, but for the unknown children and parents who are agonizing at this moment of the same ailment.


The Chair: The next submission is the Citizen Advocacy Windsor-Essex, Joyce Zuk, executive director. Good morning and welcome. Ms Zuk, I understand you have with you a Stuart Tait and a Dan Frimer.

Ms Joyce Zuk: Yes, we do this morning, and they'll be copresenting with me. We'll let Stuart Tait do the opening remarks and introduction.

Mr Stuart Tait: First of all, thank you for the opportunity to be here. I am the vice-president of Citizen Advocacy, Stuart Tait. Our executive director is Joyce Zuk, and Dan Frimer is one of our people on our board of directors.

I know you're looking at several issues here and let me say that we do not intend to address the Substitute Decisions Act or the Health Care Consent Act. We can answer some questions, particularly Joyce, on her exposure to those with the clients we serve. However, we view ourselves as advocacy experts, so that's what we're going to talk about.

Just a little background: We serve Windsor and Essex county, so this is a citizen advocacy group of Windsor-Essex. As to who we are and what we do, I might vary a little bit from the preprinted text. We are a non-profit, and I might say very non-profit, charitable organization and we provide non-legal advocacy to the frail, elderly and disabled.

We are a small organization -- four full-time employees and the rest of the staff are volunteers, including the board of directors. The board of directors represents several different groups. Several, like Dan Frimer, have actually come through our program and they keep us honest in what we do. Several are like myself, retired senior citizens, but close enough to the frail and disabled senior people that we can understand where they are and where we're going. We have a lawyer on the board, but in spite of that, we manage to be productive.

I'd like to share with you what we term as long-term advocacy versus short-term advocacy. Let me say, we are funded by three primary groups. About one third of our money comes from a government grant, about one third from United Way and about one third we scramble any way we can by running bingos, golf tournaments, fun runs, anything else we can to make a dollar.


Our money that comes from outside specifies that we are a long-term advocacy group, and our long-term advocacy program will go something like this: Our permanent staff in the office will go out and recruit volunteers. They will then train them in the advocacy skills they need. In the meantime, we have a waiting list of candidates for our service. The coordinators in the office will match the volunteer with the person requiring our service, and this is a long-term commitment. We like to think of it almost as lifetime, because in many cases it has been. We're establishing a relationship in partnership here that will continue and many times blossoms into a very firm friendship between a volunteer and a disabled person.

In performing this role of long-term advocate provider, we do run into requests coming to our office that don't really classify as long term. They're short term. It's some temporary condition of somebody where they can't provide for themselves, but with, I could say, a quick fix-it, we can take care of it. Although we're not primarily in that business, we can't say, "No, we won't do it." But it does take the valuable time of our permanent staff to provide this short-term service. What we find is that our long-term program suffers a little bit because of that.

Let me go back to our text a little bit here. This morning we'd like to talk about who can provide advocacy when we repeal the Advocacy Act. The statement we've all heard is, "It's family, friends and local charity organizations." This is fine, and certainly in a lot of cases family and friends do provide this support. However, you should be aware that our contacts in the office frequently prove just the opposite: that family and friends sometimes create the need for the support.

There's the elderly mother who's being abused by her son, the friends who are taking advantage of the money situation of a senior citizen. There are several instances that have come to our attention where family and friends are the cause of the problem, not helping to get rid of it.

The other thing we know is that family nowadays gets scattered all over the country and frequently are not in a position to help.

So while not saying that family and friends can't help, we say that many times they're either not in a position to help or sometimes create the problem itself.

Let me jump in the text from item 3 to item 4, because if we say family and friends cannot provide this service, this missing void in the Advocacy Act, then our third alternative is our community organizations. So what can we do and, as Citizen Advocacy Windsor-Essex, what do we feel we can do to provide service in this situation?

One of the big problems is we're not really empowered properly to provide the service we sometimes have to do. We go to a hospital for information and they're not willing to give it to us because we're not family. So one thing we think we need to better provide the service is better empowerment to do the job.

I don't know if any of you read the horoscopes in the newspaper. I never read that trash, but mine last night said this: "Redouble your efforts to create a secure and loving environment for someone who is vulnerable." I thought: "Gee, is that appropriate. I will vary from this text a little bit to try and do that."

When we say, what can we do as an organization, I'll share with you something we have been thinking about for some time, and that is, if we had some additional money -- and I'm not talking anything like the $18 million you're tossing out with the Advocacy Act. We are a very tight-fisted organization and can perform miracles with a few dollars. But if we had some additional money to hire coordinators who could devote their entire time to short-term advocacy and develop a program for short-term advocacy similar to the one we have for long-term advocacy -- it's a different type of volunteer entirely.

From a volunteer who builds a lifetime relationship with long-term advocacy, a short-term volunteer would have to have a different time commitment, to jump in quickly, maybe for several days, and then be involved for maybe one day the following week and one day maybe two weeks later -- case closed. Then they go on to another situation. They need a lot more training in the agencies that are available to provide service. They need a lot different schedule of availability of their time to volunteer for this kind of thing.

But we think it's possible. We've talked about trying a program like this, if we ever got in a position, which we never have, of having surplus funds from our fund-raising events. We would like to try this, because it frees up our existing coordinators to devote more effort to our waiting list of people requiring long-term advocacy.

So basically, overlooking all the nuts and bolts and fancy words, we're saying we'd like a chance to pilot test a program for short-term advocacy similar to the one we run for long-term advocacy. We don't know all the problems we'd get into using volunteers in this kind of position, but we're willing to give it a try and we're willing to be the pilot area in the province for that.

I'm going to jump back to the text now and jump it over to Joyce, and she'll probably want to go back to item 3.

Ms Zuk: Yes. Thank you very much, Stuart. While we're stating that volunteer advocates can be very useful in the facilitation of advocacy and that we are interested in developing a pilot project where we could offer short-term advocacy, that's not the end of it.

Stuart has already highlighted that volunteer advocates and even our paid staff do have difficulty when they try to advocate in our community. We are pointing out that without legal or legislated power to advocate on someone's behalf, advocates are often unable to resolve problems, obtain information or articulate issues to appropriate individuals in positions of authority. It is for this reason that we as an organization supported the Advocacy Act and now mourn its demise.

The act provided for the creation of paid advocates who were empowered through the legislation to actively support vulnerable people. The legislation provided for advocates who were able to enter institutions and care facilities and gain access to records. And The Advocacy Act legitimatized advocates acting under the Ontario Advocacy Commission who were acting on behalf of vulnerable individuals.

As an agency that provides advocacy to vulnerable individuals, we've already mentioned that we're limited in the number of ways that we can accomplish this. Let me point out a few examples that we've cited in our text.

Administrators of care facilities are not obligated to meet with us when we request a meeting to articulate a resident's concerns. I can tell you, this incident has happened time and time again in our community. They often will meet with us, but they do not have to. It's a real problem. It's a problem for our volunteers when they're going in, and it's a problem for our paid staff.


Signed authorization documents for release of information, when we supply them to care facilities or to government offices, aren't always accepted, and the common response that we get is, "Have a lawyer draft one up." Well, the reason why people are calling us is they can't afford a lawyer, and the legal clinics, as I'm sure you're all aware, are limited in the amount of work that they are able to perform.

If we are called to go to the hospital to visit someone, more often than not we are not admitted or given access to that individual because we're not a member of the immediate family.

What happens is that our efforts become a hit-or-miss type of thing, and that's no way to offer advocacy in our community.

The second point we want to address is the government's contention that agencies and organizations are equipped to provide advocacy to the vulnerable. As we've already mentioned, we do applaud the government for recognizing the work that we do in the community, but as we've stated, with the repeal of the act, we're limited as to the legitimization that advocates have.

Also, in this time of fiscal restraint, many of those agencies and organizations that provide advocacy are having their funding cut or reduced. The Ontario Advocacy Commission stated that the government could not have picked a worse time to remove itself from the business of advocacy in light of the cuts those agencies already providing advocacy are facing, and we ourselves have received cuts from one of our government funders. We recognize what the reality is, but it also impedes our ability to offer advocacy.

The rest of the presentation that I will be reading is on behalf of Dan Frimer, and he has asked me to read on his behalf.

The role of volunteers in advocacy has received a great deal of recognition as of late, and as I've already mentioned, we're pleased that the government recognizes the work that volunteers and volunteer-based organizations are providing across the province.

Volunteers can perform advocacy, and I can assure you that they do so effectively. However, volunteers require initial and ongoing training as well as support. Recruitment of volunteers to advocacy programs is also required on an ongoing basis. We've got to get the message out there. And as Stuart has already highlighted, for this reason we would condone a pilot project to give us a chance to see if we could do this.

There is a need for a consumer-driven approach to advocacy. The process leading to the creation of the Advocacy Act was a consumer-driven one. Individuals representing the disability community and seniors were empowered to take an active role in establishing the legislation that would protect their rights. The right of disabled people and seniors to articulate their concerns is critical to the legitimizing of any process which will create new legislation. The right of disabled individuals and seniors to make their own choices is paramount.

The need for systemic advocacy is also ever present in Ontario. Ontarians with disabilities are very aware that their rights are in jeopardy if not safeguarded. Issues such as income maintenance, transportation, employment and accessible housing still require a great deal of work. It required a great deal of work to get Dan to attend these hearings this morning, because there are only two forms of accessible transportation in this community and one was not accessible today.

The Advocacy Act empowered the Advocacy Commission to work towards effecting positive change on systemic issues on a province-wide basis. The government has acknowledged the importance of communities in addressing the needs of vulnerable people, but unless a province-wide mechanism is in place to examine broader issues, there will be little chance to effect overall change.

Finally, in our submission this morning, we do have some recommendations. We feel if we're going to be part of the solution, we have an obligation to look to the future. We have six recommendations, and they are as follows:

(1) The government must take an active role to ensure that advocacy is available to vulnerable individuals. I know that it's already been stated this morning that the government is not withdrawing itself from advocacy, but I'll assure the committee that the disability and the seniors' community feel that this is exactly what the government is doing. To repeal the act without suggesting replacement legislation is problematic and has left that impression.

(2) The government must ensure that any body, structure or system created to provide advocacy is one which is conflict-free. We've already discussed the issue of family and friends providing advocacy. It's very difficult, often, for families to remain free of conflict, especially when making decisions regarding treatment and care of the ones that they love.

(3) The government must move to develop legislation to protect the rights of vulnerable persons if indeed the act is going to be repealed.

(4) The government must ensure that any process which may result from these hearings is one which is driven by members from disability communities and seniors.

(5) The government must address systemic advocacy issues in order that changes to the present system of service delivery are realized.

(6) If the government does not intend to develop a central structure to deliver advocacy province-wide, they should look at providing additional funding to community organizations to train advocates and implement local advocacy programs. Even so, with that, they're going to have to come up with solutions for those communities in this province that presently don't have any volunteer advocacy structures in place.

The Vice-Chair (Mr Ron Johnson): We're going to move to questions. Each caucus has four minutes.

Mr Marchese: Thank you for your presentation. I found it very useful because you raised concerns that are important for us to address. First of all I'm sad to say that the government, by repealing this section, has effectively withdrawn itself from advocacy. It's done so by repealing it, so it contradicts all of your recommendations, in a way, which I'm not sure how we'll recover, from the suggestions you make, based on the repeal of this Advocacy Act.

This government is saying, "We don't need institutionalized advocacy," meaning the government should not be in the business of providing advocacy. That's what they say. Then they say: "We should provide training. Do you agree with training?" So you end up saying, "Yes, we do."

Ms Zuk: Yes.

Mr Marchese: "What about volunteers? Should we train them?" You'd end up saying, "Yes, we need training for volunteers." Then what do we hear from the government? Nothing. That's the problem. We've got a problem. The problem you speak to is that individuals are advocating out there and organizations are advocating out there and so are some family members advocating out there.

Stuart mentions that friends and family sometimes create the need for your support, and you recognize that because you're in the business of providing advocacy. You talk about the limitations of organizations -- not having the authority to intervene -- so it's hit and miss, as you said. That's the problem we've got. Any volunteer thing this government recommends is purely voluntary.

We train people in organizations, let's say, even if they put in some dollars I'm not sure, but then we have the problem that you talk about: How do we get the authority to intervene? We've got a problem.

I think this government has an obligation to tell you and to tell us what they're going to do -- not later, once they've repealed it, where we won't know or have a sense of what they will propose, but now, so that we can say we agree or disagree or organizations like yourselves can say you agree or disagree. You propose a pilot project; it's very nice as a short-term measure of advocacy, but that's only a pilot project. Even if they were to agree to that, we've got a problem because it's not systemic, which was the intent of the Advocacy Act and the commission. Do you have any response to that?


Ms Zuk: Perhaps I'll respond first. Of course, everything you've just stated we agree with 100%, but we're trying to exist in the real world too. We're having hearings here. It's been proposed that the act is going to be repealed. It's had its first reading in the House. I don't know what's going to happen out of these committee hearings. I heard, I've been told, I've read that the government wants to get out of the business of advocacy, but I also heard just this morning that the government doesn't want to get out of the business of advocacy.

We would like some clear direction from the government. That's why we said that to repeal the act and not suggest any replacement legislation or what they're going to do next creates problems for us. So we're trying to work within the fiscal reality that there's not money out there, but the bottom line is that advocacy is a right. I'm sure that you've heard this across the province.

The government has an obligation to assist vulnerable people and to fund a body, create a mechanism, something to support these people. Hey, we'll do it, we'll continue to try to do it on a volunteer basis, but if anyone in this province thinks that we're going to do it effectively and systematically and province-wide, they're dreaming; we can't do it. But we're going to try because we care.

Mr Clement: Thank you very much for your presentation. Stuart, I just want to say that you presented, on behalf of your organization, an excellent model of how things should be done in the community, how to empower people in the community, and you made a lot of practical recommendations on how to create a system out of that that's better. Relatively speaking, these organized efforts are relatively new, if you look at the whole history of Ontario, but it's been growing very rapidly to meet, obviously, a rapid demand. But you've been doing an excellent job out there, and I wanted to praise you for that.

People told us that the way to deliver these advocacy services was not to create another institution.

Mr Marchese: Who told us that?

Mr Clement: I knocked on 20,000 doors in my riding, Mr Marchese. I just want to say to the members opposite that if they think that creating another governmental body is going to solve all of the problems we have heard over the last two weeks, they're chasing a mirage. In fact, they are purveying a mirage. We believe in empowering individuals, individual responsibility and duty but also individual empowerment.

Mr Marchese: How do you do that?

Mr Clement: That's what we're here to find out, Mr Marchese. We're here to take input. You condemn us when you say that we aren't listening to people and then when we want to listen to people you condemn us again. Maybe that's the role of the opposition, but I'm finding it a bit tiresome myself.

I just wanted to put that point on the table, that institutions can cause problems as well as family members. We're not saying that family members are 100% perfect along the way but I guess our inclination, by and large, is that family members love the vulnerable person in their life and want to do the best for them.

In the exceptions, that's why we have laws and public guardians and trustees and substitute decision-makers, health practitioners, whatever, that can move in to protect the rights of the vulnerable individual. I'm just curious why you, being a member of a very successful organization, think more government institutions are not a mirage?

Ms Zuk: If I could respond to that one, I appreciate what you're saying, that you believe that family and individual empowerment and everything else is the direction to head in. But I'm telling you, Mr Clement, the very reason we exist is because family members don't take care of their own. This is the reality.

We feel that 389 facilitations of service last year from individuals who called us and did not call their family and did not call their friends -- you have to be aware, and we don't want to admit, that it's family members and friends who often commit abuse in these circumstances.

I don't know what the answer is, but we're suggesting that the government has to take a lead here. I know that you've just stated that the office of the public guardian and trustee is there, that it's set up to intervene. They cannot possibly get out there and investigate all the issues of abuse.

When you have to prioritize, someone who's being abused in a care facility is a higher priority than someone who maybe gets his vets' pension cheque taken by his daughter every month to go and buy alcohol.

Mr Clement: I'm not denying abuse occurs, Joyce.

Ms Zuk: But I think it's more rampant than what the government knows.

Mr Clement: You seem to paint a picture that all family members in our society are out to damage.

Mr Dan Frimer: No. No.


Mr Clement: That's what I'm hearing. So please correct the record.

Ms Zuk: We do work with many families that wish to assist their vulnerable individual, but I'm telling you we also work with a lot of people who are being abused by their family, or even more prevalent, with people who don't have family or friends or a societal contact and who are isolated. We have a number of files right now from individuals in Essex county, outside of the urban centre, who are isolated because of their disability or their age, particularly women who are seniors. Their children have moved away, their husbands are deceased and they are alone. What are we going to do about those people? This legislation doesn't take them into account.

Mr Clement: We're not the solution you're seeking.

Mr Duncan: I knocked on 32,000 doors and this issue didn't come up once. In fact, there wasn't one of your people elected for 50 miles.

Let's talk some more about the substance of the issue, Ms Zuk. I'd like to review with you for a couple of moments, given that they are going to get rid of advocacy -- they've said that. The bill is forward. You've presented six recommendations. I'd like some comments from you around the replacement for advocacy. We're looking at things; for instance, we've talked about the PPAO expanding its mandate and providing enhanced training and those kinds of initiatives for organizations like yours. Can you expand on that a little bit and share with us some of your views? Given the fact that they acknowledge they don't want to proceed with any kind of advocacy, can you share with us some of your views on what perhaps --

Ms Zuk: If the government does not want to create a bureaucratic structure to deliver advocacy, there is still a possibility that legislation can be put into place to address some of the issues that we're dealing with on a regular basis. Let me give you some examples. We, as a non-profit, volunteer-based group, solely deal in the business of instructed advocacy. So when we advocate on a vulnerable person's behalf, they must provide us with instruction. That's the way it works. There are legal implications if we act for somebody without getting their consent, and that's not what we're in the business of doing. The office of the public guardian and trustee has the authority to take action in situations without getting consent, obviously.

Two problems that are coming up quite often are with elder abuse and with developmentally disabled adults. No one who's in the business of service provision is obligated to report incidents of elder abuse that they come across unless they view these incidents in nursing homes and those types of facilities. What happens is that our office will get a call from the homemaker who's been cleaning the home of an elderly woman whose son or daughter, whatever, is abusing her. We go out, work with this woman to empower her and encourage her to the point of bringing her concerns forward to the proper authorities. For a number of reasons she doesn't want to go any further.

We were called out on a case about six months ago where a woman who was developmentally disabled was being sexually abused by someone who was making deliveries to her home. We're working with her, trying to encourage her to move on to the appropriate authorities to make her concerns known, trying to work with her to show her that this is a problem, and we can't. There's no legislation that obligates us to do something about it.

Help us out. We want to be obligated to do something about it. We want to be able to call a paid advocate to come and do something about it. That's something the government could do to help us out. It tears us apart when we hear about these cases because, as a community organization, volunteer-based, we have no authority to act. We're looking now at developing a moral code, something to guide us and instruct us further internally, but some provincial directive would really assist us.

The Vice-Chair: I'm sorry, the time has expired. I want to thank all of you for your presentation to the committee.

Mr Tait: We thank you for this opportunity.



The Vice-Chair: We're going to proceed with Terri Grant-Galli, who was scheduled at 2 o'clock. She'll fill the slot at this time until lunch. Ms Grant-Galli, you'll have 30 minutes for your presentation. You may want to allot some time for questions.

Ms Terri Grant-Galli: Good morning, everyone. I'm not as relaxed and calm as I was hoping I would be when I did this presentation. I was expecting a couple of hours of being able to observe other people's. What I'm going to do, if it's not too offensive because of my state of nervousness, is basically read the report that I've given you and hopefully be able to add some other insights.

I'm currently employed as a rights adviser with the Advocacy Commission and provide services to all facilities, hospitals, nursing homes, long-term-care facilities and private residences between Windsor, Chatham, Leamington and Sarnia, and on occasion London. Although I'm part of a team, I am the only advocacy employee in this region. I've worked extensively in the past with community-based organizations that have advocacy as a cornerstone of their purpose. This includes the Multiple Sclerosis Society, the AIDS Committee of Windsor, the Consumer Survivor Alliance of Windsor and Essex County and the Ontario AIDS Network. My combined work with these groups probably totals about 20 years.

The population I serve as a rights adviser in the tri-county area is approximately 600,000 individuals. Of this number, it has been estimated by the district health councils in the psychiatric hospital restructuring consultation and discussion paper of last year that approximately 35,000 persons are currently suffering from serious mental illnesses such as schizophrenia, mood disorders, organic brain syndrome, paranoia and other psychoses, severe personality disorders, and dual diagnosis disorders.

This number is substantiated by the Ontario Mental Health Supplement which indicated that 2% of the general population is so affected. This number does not necessarily include child or adolescent patients, the psychogeriatric population, people suffering from addictions or individuals who are developmentally handicapped.

Since proclamation of the act on April 3, 1995, I have seen approximately 550 people in the course of my work. These individuals were people whose rights were affected either by the Mental Health Act, the Substitute Decisions Act, the Consent to Treatment Act or the Advocacy Act.

First a bit about how I do my job. I work out of my home, on my own personal computer, using encrypted access not connected to the Internet, for security reasons, with the technical assistance of a fax machine-copier, a telephone and a pager supplied by the commission. I'm scheduled to work 40 hours a week and on call an average of 47.75 hours additionally. I can respond to any emergency within my region day or night for a consent to treatment issue, for example, within two hours, depending on travel time. I use my own vehicle, which I personally insure. I'm reimbursed the lowest amount per kilometre allowed by the province. There is no regional office, thus there's no overhead. All of the intake and referral is done through a 1-800 number in Toronto.

This is a very cost-effective method of service delivery. The most important features of this system of service delivery are the consistency, the expediency and the accountability. The time lines legislated for rights advice delivery are tracked by the system, and we must call in completed visits and the results immediately. This level of accountability is crucial to ensure that the visits are completed, and if there are any additional problems or issues that need to be addressed -- for example, the need for an interpreter service or any other special circumstances so these issues can be dealt with quickly and thoroughly.

I dress semi-casually, as I'm sensitive to the fact that most of the people I see are in johnny shirts and paper slippers, sometimes in seclusion rooms with a mattress on the floor. I deliver the information the patient needs in a way they can understand it, laying out their options in a way that informs but does not influence their decision, and if a review board is requested, make the application, fill out the necessary legal disclosure forms and applications, and make the application for the hearing.

For those of you who are of the legal persuasion, you recognize legal aid applications. They're very long, tedious and difficult forms, particularly to people who are vulnerable, ill or upset. They have to have complete information on all the assets they may have ever had in the last 10 years and it's quite daunting for people who are ill.

Often this requires more than one visit due to the health of the patient. If they are very ill or unable to understand the information on my first attempt, I return and give the information again, and will return as often as required to make sure they understand this information. I do not make decisions for the patient, but listen carefully to enable each individual to do what they feel they need to do in a way that makes them comfortable. Also, if the patient chooses not to hear the information, I leave and let them know they have the ability to call me back for consultation later.

In discussing this issue with nurses and doctors about how rights advice was handled in the past, I discovered that the service was spotty and sometimes non-existent. Duty council was often assigned to this service and the quality was variable. I've been told that certain lawyers were terrific, taking as much time as necessary to ensure the information was understood by the patient, but just as often, lawyers were pressuring patients to apply for review board hearings, promising them early release from hospital, which may not have been a realistic expectation, or not bothering to inform the patient if they were uncomfortable with the patient.

For example, if they thought the person was violent or disruptive or if they were suffering from a condition that perhaps made them erratic in their behaviour or if their physical condition was something that was unpalatable to the legal counsel, they would choose not to give the information, sometimes saying things like, "Well, maybe this person doesn't really need to know this anyway."

Many of the lawyers I've dealt with since proclamation have expressed great relief with being able to spend more time in preparation for hearings rather than filling out legal aid applications and speaking to people who did not want or need their services.

It is recognized in this community that, without a centralized system, the service cannot be monitored for efficacy and consistency, ensuring all Ontarians equal access to justice. I've never heard a complaint about the services of the intake and referral department of the commission, but rather praise about the thoroughness and the time taken to explain to staff, patients and the public the legislation and its implications, as well as referring to advocacy services available within the caller's community.

If someone were to call from the general public requesting information about what advocacy services could be accessed for perhaps a gerontology issue, they would have the complete list of what's available in the province and be able to give them concise information immediately, and if they couldn't find it immediately they'd find it and get back to the individual quickly.

Some of the misconceptions the public has about the commission and its role have been deliberately perpetrated by its detractors. An editorial that appeared in our only local paper on Monday contained numerous blatant inaccuracies and untruths from the role and actions of advocates and rights advisers to the budget of the commission to the lack of support in the community for the role of advocacy.

I know this group has heard from the nurses' association, from the College of Physicians and Surgeons, and from individual hospital representatives claiming that the existing legislation was an impediment to their work. I challenge that these assertions apply in this community. These professional regulatory bodies were charged with the education of their counterparts with regard to the legislation and did not effectively pass along the information required to implement it. They did not do their job.

Time and time again I was asked by doctors, nurses and facility staff to explain portions of the legislation and how it applied to their work. I answered these questions and referred them to their professional associations for further information. Each facility educated its staff, with varying degrees of success and thoroughness. As recently as last week I was called in to see a patient held in seclusion at a local hospital on a form 3. I'm hoping that people understand the lingo here. Form 3 is a two-week psychiatric incarceration. The person has the ability to apply for a review board hearing but the doctor has the right to keep the person in the hospital in seclusion, and medicate and treat them for the period of two weeks.

The nurse in charge of that patient usually worked nights and we had never met. She was unaware that rights advisers were called when people were put on forms and told me directly that she felt the patient didn't deserve to have rights because he was violent and unpredictable. There is still the conception by some that rights are to be earned and not inherent or protected by the charter.

My first visit as a rights adviser after proclamation was a consent-to-treatment issue, a patient with advanced stages of anorexia. I was met by a nurse in the pastoral care centre when I arrived and was told what she wanted me to do was to inform the patient that she had no choice in her treatment options and that she had to go along with the proposed treatment, rather than the truth, which was that she could appeal the finding of incapacity.

The nurse was angered when I explained that the patient did indeed have the option to appeal and threatened to disallow my visit.

The patient did not challenge the finding. She had been so beaten by the system by that point she realized it wasn't going to be worth her while. The hospital resumed its treatment. My initial exposure to how some individuals in a position of power perceive the rights of others was not a positive one. Fortunately, some facilities have recognized that the health care professional is the patient's first advocate, and welcome the autonomy and dignity this legislation can provide for their patients.

Since then, I've had many experiences that have underscored the important of making information available to vulnerable people and perhaps, more importantly, a mechanism that ensures that they are heard when it comes to making decisions around their care.

In June, a 68-year-old woman with a history of manic depression but otherwise excellent health was hospitalized for psychiatric treatment here in Windsor. Her condition was brought under control by medication, but while hospitalized her children decided she should be admitted to long-term care and give up her rent-controlled apartment, her friends, her pets and the comfort and familiarity of her neighbourhood; she'd been there for over 60 years.

She was made incapable of consenting to treatment, for placement, and for the administration of medication to control her manic behaviour. I was called in to give her rights advice and found that she was most distressed at the thought of being put in a nursing home "with all those old people." She's a very vibrant woman, a lot of energy and an amazing contributor to her community.


After lengthy discussions, she decided that she agreed that while she may be incapable of making decisions around her medication and understood that this was necessary to control the behaviours, she was truly capable of living independently otherwise. She decided to challenge the placement issue, conceding the medication issue. Visiting nurses would monitor her medication. She agreed to see her doctor regularly, and she's been living alone, successfully coping with community supports since her discharge almost eight months ago.

She's avoided living in a nursing home and the expense and stress around that by careful utilization of the resources in the community, simply by acting on her options and having someone listen to her. She and her family are very pleased with the outcome and have agreed to revisit the issue of a nursing home accommodation should it become necessary in the future.

Her fears have been allayed about subsequent long-term care, but she doesn't have to go any sooner than she wants to go. She's able to live in her apartment on Goyeau and do what she needs to do to get along in her life: go to the seniors' centre, visit with her friends, keep her cat, all the things that make her life worth living.

An elderly woman suffering from Alzheimer's was in a county nursing home for several years, abandoned by her family -- their only contact with the home was a mandatory care plan meeting held annually -- and they chose not to visit her during that time. At one of the meetings they insisted that a charge of $50 monthly for her disposable diapers be eliminated from the plan so the money would accrue in her estate, and she be furnished with cloth diapers that caused her considerable discomfort and skin eruption.

The home continued to furnish her with paper diapers, drawing the money from a discretionary fund for similar circumstances. Her pension had been automatically deposited into a trust to cover her expenses at the home, but inexplicably, the cheques stopped coming for several months. Upon investigation, the manager of the home found out the children of the patient had called and written the pension administration office and, forging her name, had informed them that their mother had been discharged from the nursing home and was being cared for by them at home. This woman required 24-hour care.

The home, concerned for the financial security and the apparent abuse by the family, had an independent capacity assessment ordered and involved the public guardian and trustee, who subsequently investigated and pressed charges of fraud. Without the legislation as it stands, the home would not have been able to protect the interests of this patient.

I also have to let you know that these anecdotes I'm giving you are very emotional for me, because some of these people are so desperate. They are so alienated and so disempowered by systems and people who are there to protect them that it's shocking, and I wish I could take each of you around with me for a few days. I really think that would be the best education any of you could have.

Over the Thanksgiving weekend, I was on call in the London area. I was called to give rights advice to two patients in Victoria Hospital, both elderly people suffering from broken hips sustained in falls, scheduled to have surgery to repair the damage the next day. Both patients had psychiatric histories. One of them, a 69-year-old woman, had been a long-term patient -- 40 years of institutional care -- at London Psychiatric Hospital with a diagnosis of schizophrenia. The other patient, a 78-year-old man, was a resident of a nursing home, with over 50 years of institutional care, and considered catatonic schizophrenic. Both patients were made incapable of consenting to treatment. The proposed treatment was to set the fractures.

When I arrived at the hospital at 8 in the evening, the charge nurses expressed surprise that I had come out on Thanksgiving and that it was even necessary to give rights advice to this type of patient at all. The staff informed me that the patients were both non-verbal, that the female patient had not eaten since her admission the morning before.

The staff had attempted to get consent from the brother of the female patient over the telephone but he'd refused, stating he didn't want to interrupt his dinner plans and he "didn't care who made the decisions or what they decided." His further explanation was that this woman, with her illness, had interrupted too many family dinners in the past and he didn't want to be bothered. Verbal consent for surgery had been granted by phone by the brother of the male patient.

When I entered the female patient's room, I introduced myself and asked her if she knew where she was. She was aware of her surroundings and explained to me that she had fallen, her hip was broken, she was in pain and she was hungry. She understood the risks involved in the operation and what would happen to her if she did not have the surgery. When I asked why she hadn't eaten the meals delivered to her, she told me that they'd taken her teeth in the emergency room and hadn't returned them. The regular diet they sent required teeth. She was admitted on Saturday morning; I saw her 8 o'clock Sunday night. All she had furnished her at that point were meals she wasn't able to eat and water.

I asked why she'd not raised this with the staff, she explained they had not addressed her directly since her admission but rather came in, did their care duties, sometimes two at a time, never spoke to her, but rather over her to each other. She had not received any medication for pain since her admission. She was not surprised that her brother had refused consent on behalf of her surgery -- the relationship had not been close for many years -- but was annoyed that she had not been asked for consent herself. She explained, "I have schizophrenia; I'm not stupid." When I questioned her about why she had not spoken to the staff since her admission, she explained that after so many years of institutionalized care she'd learned not to rock the boat and never volunteer information without being asked for it. No one had asked her anything and, anyway, she was embarrassed to talk without her teeth.

I explained the public guardian and trustee would give consent on her behalf and she was relieved that the surgery would not be delayed. I informed the patient that she could speak up to staff if she had a problem or a question, but she feared that she wouldn't be listened to. I brought her nurse into the room, introduced her to the patient, and explained to the nurse how the patient feared she would be perceived. The nurse then retrieved the patient's teeth, brought her morphine for the pain, fed her and the patient was grateful to be spoken to, not over or around, and was much more comfortable with the staff situation when I left.

When I visited the male patient, I was met with very similar circumstances. He knew what had happened to him, why he was there, but wasn't sure what hospital he was in because nobody had bothered to tell him. He had not been spoken to directly by staff either, but they'd spoonfed him his meals. He had not received any pain medication. He was offended by the idea that his brother had been given authority to act on his behalf for decision-making without his being asked or informed, since according to him he hadn't received as much as a Christmas card from him for over the last five years. He also understood the implications of the surgery; so well in fact, he said he hoped he wouldn't die of pneumonia in recovery, because he knew others who had suffered that fate. Again, I brought staff into the room, introduced them to their patient, and filled out the appropriate forms.

The staff were incredulous that the patients had spoken at all. They'd assumed that patients, due to their psychiatric diagnosis, were unable to communicate. This is not a new hospital. This is not a new program. These are osteopathic nurses in a well-known, well-respected setting.

This situation illustrated to me there are serious deficiencies in the health care system in that, firstly, nursing staff felt justified in treating patients with disrespect because of the stigmas attached to mental health problems. These professionals were, to a person, totally dismissive of the idea of self-determination or independence for either of these people. Fear and ignorance in general society means that discrimination and isolation are daily realities for many vulnerable people. These are particularly disempowering and painful when these realities are encountered in a health and social service setting. I don't believe the outcome of either of these cases, the surgeries, would have changed if they'd not received independent rights advice. It wouldn't have mattered if they'd received it at all, but I know both patients felt much more honoured for having been considered.

An elderly male patient who had suffered a debilitating stroke here in Windsor was made incapable of financial management when the hospital staff realized his niece was helping herself to his money and attempted to have the powers of attorney backdated to predate his incapacity. The public guardian and trustee successfully intercepted the most blatant of these abuses, halting the sale of properties -- and I'm talking about considerable property; we're talking about, from what I understood from the records, over $500,000 worth of property -- that she did not have legal right to. It was eventually decided that the niece would be permitted to manage his affairs, as was the patient's wish, but with supervision and with the benefits of the resources of the PG and T, and a management plan was filed.


Early in the new year I was called to give rights advice to a woman who had made a very serious attempt at suicide, and this particular case has direct bearing on the cuts that were made to social service assistance early in the year. I want you to listen to this, because this is just one of many people I've seen in this situation. I know it has nothing to do with this hearing in particular, but it does impact on the number of people who are seeking assistance in the mental health profession as a result of the incredible lack of foresight this government has shown in making indiscriminate cuts to people's funding.

Her financial assistance had been decreased. Her rent was doubled. She couldn't feed or clothe her two teenage sons on what she received. She attempted to go to a local food bank for more food, who after verifying she was on assistance told her she didn't qualify, she made too much on assistance. She decided to approach the local children's aid to have her children put into temporary care so at least they would be fed. The worker informed her there were no spaces for her kids and there was a waiting list for foster care. If it were considered an emergency, however, they would be taken in. When she asked what constituted an emergency, the worker said if anything ever happened to her or she were to die, her kids would be taken in.

She was so desperate to provide food and shelter for her children that she made a very serious attempt on her life. One of her sons ran away, a 15-year-old on the streets in the middle of winter. The other was taken into care. Now she'll have problems retaining the custody of her children because of her psychiatric history. I was able to put her in touch with other community agencies that helped to some degree.

The next circumstance I'm going to describe is one that is a very personal one that affected me before this legislation was put in place. A personal experience of just over a year ago clearly illustrated for me the necessity of the provision of mandatory rights advice to ensure that previously expressed wishes for care are taken into account when a person becomes incapable.

One of my closest friends of many years, a 42-year-old man, had AIDS. I cared for him on several occasions after hospitalization for serious complications due to the progression of his disease. This is an intelligent, prosperous, independent man who had worked for AIDS service organizations for years before he became too ill. He was sadly acquainted with how some families behave when people with AIDS become ill and prepared well in advance to avoid the circumstances that had caused so much stress in other people's lives.

He had made clear, concise requests in writing about how he wished to be cared for if he became too ill to manage on his own, asking his ex-partner and myself to share the responsibility of health care decisions together and financial and property management to be handled by a third friend. His motivation for these decisions was the fact that he'd been estranged from his family for decades and although he wanted to spend time with them before he died, he did not want them influencing his care decisions.

Both his partner and I have extensive experience working with persons with AIDS and his fundamentalist Christian parents were ashamed of him and his disease and chose not to educate themselves about it. He wanted to heal the strained relationship before his death and to appease his family agreed to move to their home town with the understanding that they would contact us as soon as it became necessary. Now, this was acknowledged personally face to face as well as in writing.

Instead what happened was the exact situation my friend tried to avoid. His parents did not contact us when he became ill and waited until 12 hours before he died to bother. In the meantime, the last 10 days of his life, they allowed him to be subjected to numerous invasive procedures that he'd expressly wished to avoid, including the administration of medications that had been toxic in the past to him, unnecessary biopsies, even though he clearly repeatedly protested the proposed treatments. Instead of allowing their son the gentle passing we'd pledged to give him, in their panic and fear they made his last days on earth a living hell.

Within a day of his death they had gone to his home and destroyed everything that could be associated with any aspect of his life that they didn't approve of, including photographs and journals that had been prepared to be published. The people who loved him, his family of choice, who had been entrusted to his care were not acknowledged by either the health care professionals nor his family. They did not present the powers of attorney that had been drawn up when their son was well and able and they interceded when we tried to contact him. A formal process providing rights advice would have saved my friend untold pain and the friends who loved him untold guilt and sorrow.

These anecdotes are just a few of the incidences that I've experienced since beginning my employment with the commission. A lot of equally horrific things have occurred that I've been witness to in my work as a volunteer with other organizations.

Misconceptions about rights advice abound. I do not -- I repeat, I do not -- ever make decisions for anyone. I merely present them with the information they require to make the choices they need to make and I enable them to participate in making these decisions. A lot of what I do is active listening, something there is little time for in the psychiatric setting in particular.

In the Windsor-Essex county area, the average psychiatrist spends a total of three minutes per day with a hospitalized patient. This is someone who has been stripped of their rights who is hospitalized. Don't forget, I only see the people who have been put on forms. I don't see everyone who has an admission. You'd have to have 10 or 15 of me. I only see the people whose rights have been taken away from them by a psychiatrist or a medical practitioner. I don't see anyone else. I'm only in to see people whom I'm called in to see.

We have 15 psychiatrists in this area. We need 35 to keep up with the caseload. Rights advice provides patients with a feeling of value and wellbeing. They realize I'm there exclusively to represent their interests. Most often patients determine that they are in the right place, their doctor is making the right decisions for their care. Sometimes they just need that reassurance.

I do not become embroiled in family situations unless the vulnerable person is left out of the decision-making loop. Most families welcome a clear understanding of the legislation and value the autonomy of their elders and those who are ill. They work towards solutions and do not see this legislation as problematic or the services as invasive. Over 500 visits and I've only had two incidences that a family became upset about their member being given rights advice. Both of these people thought that -- one was a young woman whose mother didn't want me to give rights advice because there was a situation of abuse in the family that she was afraid this young woman was going to disclose. The second was an elderly woman whose daughters didn't want her to know that she had rights to contest some of the decisions that were being made around her care.

There has not been one single formal complaint about the provision of rights advice service since the implementation of rights advice in this province under the Advocacy Commission. Very few misunderstandings have occurred. These have been resolved quickly and creatively.

I would like to submit some concerns I have about the proposed changes of this legislation in Bill 19 that I feel will seriously undermine the gains made by vulnerable people since the proclamation.

The proposed reconfiguration of the Consent and Capacity Review Board which allows the chair to name one person to act on his behalf to hear cases is totally disempowering to people who are in need, absolutely. They are being told they're being locked up by one person. They want a panel to hear them, and they should be entitled to have people making a decision around the information that have some skill in capacity assessment, not someone who isn't clued into what's going on.

The provision of protection from liability for decisions made by substitute decision-makers and health practitioners around treatment or admission to a facility further disempowers the vulnerable. We aren't in Ontario a litigious society by nature, although I can see a lot of charter challenges coming up. To remove the option of being able to sue your doctor if he does something that is blatantly out of line is tantamount to devaluing and dismissing any value of the patient. In discussion around this issue, several doctors have been dismayed that their less accountable counterparts would be further able to pressure patients without interference or question.

The reintroduction of electric shock therapy for aversive conditioning by a substitute decision-maker is also extremely problematic. I know you've heard People First talk about this, and I can't be more eloquent than they.

The idea that the health practitioner has the right to treat despite refusal, even if the substitute decision-maker is a guardian of the person, attorney for personal care or board-appointed representative, what is the purpose of asking people's consent? If you are told by someone they don't want the treatment, you're told by the substitute decision-maker they don't want the treatment, and the doctor says, "To hell with you, I'm going to give you the treatment anyway," what is the point? There is no value there.

The other issue I want to raise very, very briefly -- and there is a summation that is on the last page of this -- there are some systemic issues that the Advocacy Commission could really help with. The psychiatrization of youth in Sarnia, for example, is one. I've made numerous calls to Sarnia and very few to Windsor or Chatham; 27 calls to Sarnia so far. Kids who are locked up in psychiatric wards, mostly for behavioural problems -- parents can't handle it. Instead of getting help for the parents to learn how to cope with a disgruntled teen, they're putting them in the units and they're locking them up. It's absolutely archaic.

People who are locked up in psychiatric wards -- I must preface this; 80% of the people I see are Mental Health Act. The rest of them are consent to treatment and substitute decisions. When people are stripped of their clothes and their dignity and their name -- they're given a number -- and are given three minutes by their doctor a day, they need to have access to information and care.

I've included in this for your edification, so you do understand that there are health care professionals who do in fact uphold the value of patients receiving rights advice, letters. I'd like to read the names of the people who have sent them, please: Mary Lou Dolan, RN, psychiatric unit manager; Dr R. Frisch, psychologist at the University of Windsor; Mr Harish Carpenter, RN, psychiatric unit manager; Nancy Merry, RN, psychiatric unit manager; Amanda Gellman, executive director of the AIDS Committee of Windsor; Dr P.K. Rai, psychiatrist; Dr Asoka Rajan, psychiatrist; Richard Sabo, mental health planner; and Gary Klein, lawyer.

Had I attempted --

The Vice-Chair: Ms Grant-Galli, I am sorry. The 30-minute time allocation has expired. I want to thank you on behalf of the committee for your presentation.

The committee will stand in recess until 1:30.

The committee recessed from 1202 to 1330.


The Chair: Our first submission is from Susan Phelan and Norma VanDuser. Welcome. Please proceed.

Ms Norma VanDuser: Mr Chairman and honourable members of the standing committee on administration of justice, I am here today to support the passage of section 66, Bill 19, and I would like to thank you for this opportunity to speak before this committee. I realize that, not being a Canadian citizen, this is most certainly a privilege. However, I am not here as either a Canadian or an American; I am here as a parent who understands the excruciating pain other parents of children with severe self-injuries have had to live with every moment of every day, having been there myself.

I raised my granddaughter, Amber, from birth. She was diagnosed with hydrocephalus, which required the implantation of a shunt to drain the fluid from the brain. She also engaged in self-injury at the early age of 18 months. The most serious of her self-injurious behaviours had been head-banging, including head to table, head to floor, knee to head and hand to head. The intensity of these behaviours had reached such severity that they were causing dreadful damage that included black, swollen eyes, a broken and bloody nose, a concussion with a perforated eardrum, and eventually brain damage. She had also begun to aim her blow to the head directly at her shunt implant, a behaviour we and her neurologist considered life-threatening due to the danger of dislodging or damaging the shunt itself.

We had reached the point where I had found myself actually sleeping with my arms wrapped around her every night in order to prevent her from either hitting herself with her fist or slamming her head against the bed, as she had the night she received the concussion. Now the days and nights seemed to run together, and the only hope left was medication or restraints.

Reluctantly, we tried medications. The medications we tried had to be increased to the point where they were nothing less than a chemical lobotomy. We wanted more than a vegetative state for Amber. Restraint would have to be constant, resulting in essentially the same inability to function as the medication produced.

Then, on a visit to her neurologist, he talked to me about a new aversive treatment, faradaic skin-shock. He gave me some literature and a videotape to take home. Almost two years later, at the age of seven, after a lot of agonizing and her injuries mounting up, we decided that this was her last hope, a treatment of last resort.

We were absolutely astounded by the immediate results. Amber's rates before the aversive treatment were 30 to 40 hits per minute. Two days after implementing this treatment, Amber's rates of head-banging dropped to relatively zero. Within two months, Amber began walking with a walker, communicating more and, especially delightful to us, she was full of giggles, hugs and kisses -- not at all that frustrated, unhappy little girl we knew before.

Amber utilized this treatment for almost four years. Her rates of head-banging remained at near zero. The treatment was no longer needed at home. Progress on all fronts had been made. She developed a good vocabulary of both expressive and receptive language. She could recognize words that were spelled out verbally to her and was just beginning to recognize written letters and small words. Best of all, she could now say, "I love you," words I never thought I would hear. She was a remarkable and courageous child.

Unfortunately, we lost Amber to medical complications unrelated to her self-injury. However, thanks to this treatment, we were able to experience the love that Amber was finally able to express to us and we cherish the remarkable memories that were made during the years she utilized this treatment.

I don't know what we as parents can say that will prevent interference from those who have not experienced the pain that families who have children with self-injury have gone through and the gift of hope and the gift of joy in watching their child become a real participant in life. During Amber's nearly four years of treatment we experienced a lot of interference and attempts to remove the aversive treatment. We were not only fighting to keep her alive and well, but we had to go to court and fight to keep the very treatment that was saving her life and allowing her to remain at home with those of us who loved her.

Some people do not hear our voices. Perhaps you have the answer to that dilemma in your hands in the form of this proposed Bill 19. Please consider carefully the lives of the children and adults afflicted with self-injury before you make your decision. I urge you to pass this bill.

Thank you again for allowing me to speak to you today on this important subject.

There's one other thing I wanted to say. In 1989, Amber was the first one in Michigan to receive this treatment, and since then there have only been two other cases. I want you to understand: People do not line up around the block to get this treatment; it's only for those children who really need it.

Ms Susan Phelan: Chairman and honourable members of the standing committee on administration of justice, I also am here today to support the passage of Bill 19, section 66, and wish to thank you for this opportunity to speak.

Like Ms Van Duser, I am not here as a voice representing any of the many advocacy groups that speak on behalf of disabled people in general, but as the parent of a severely self-injurious child who has not been successfully treated through the use of medications and non-aversive techniques alone, whose voice I hope will convey the necessity for preserving the availability of the treatment of faradaic skin-shock as a lifesaving treatment for those in desperate need of protection.

When my son was born 21 years ago he suffered severe birth trauma. Due to the high-forceps procedure used in his delivery and the misplacing of the forceps, he had no respiration, no muscle tone, no reflexes, and his heartbeat was critically low. When I first saw him a few hours later, his face was misshapen, swollen, battered and bruised. He had a black eye that took almost six months to fade away completely. I was told that this and the resulting damage to his eye were due to the misplacing of the forceps, but now I wonder if he could have been self-injurious in the womb.

Terry started to receive therapy when he was three months old. By the time he was a little more than a year, he had made some improvements physically, could roll over but not crawl, could sit in a corner chair but not sit independently, was wearing glasses, refused to drink from the bottle and had no interest in learning how to drink from a cup or finger-feeding, would handle toys for only a few seconds before throwing them away, had suffered ear infections and had started banging his head against the rails of his crib.

By the time he entered school at the age of three, his head-banging behaviour had progressed to his hitting himself in the head with his fists. He had been attending OT, PT and speech therapy regularly. Sensory integration therapy had been the main focus to deal with his tactile defensiveness behaviour. He seemed irritated with touching around his mouth, head and extremities. I sent him to school with a toy truck in his hand to keep it occupied during transportation, which worked for a while. Soon, the school recommended the use of a protective helmet, which worked until Terry realized the helmet had pie-shaped holes on the top through which he could hit his head. For a short time we tried padding his right hand, but that interfered with his ability to learn to feed himself and play with toys, so a football helmet was prescribed.

By age five he had made no gains in receptive or expressive language for eight months and his self-abusive behaviour had increased to the point to where he could now hit himself on the chin underneath the helmet and was starting to kick himself in the head with his feet.


While the teacher and everyone else working with Terry at the school were encouraging me by saying they could see a lot of potential, but his behaviour kept getting in the way, and that he probably should be in a trainable mentally impaired classroom instead of the severely mentally impaired classroom he was in, if it weren't for his behaviour problems, at the same time the social worker at the hospital was trying to convince me I had unrealistic expectations and the physical therapist there felt he would be "more trouble" if he learned to walk. When I asked the many doctors involved with his care for help, they said, "Kids like him do that."

One night, while using a Pringles potato chip can on his arm as a splint, I awoke to the well-known thump, thump, thump coming from his bedroom. I ran in and found Terry's face and pillow covered in blood. He had learned how to remove the can. His eyes were swollen shut. When I grabbed his arm to stop him, he started to cry and so did I. I cleaned him up and took him to the emergency room. While there, a young nurse's aide -- and I'm sure from the looks, many others -- thought I had abused my son.

I sought out the help of a private psychologist to evaluate Terry's current school placement. He assured me that his placement in the SMI classroom was appropriate due to his behaviour problems. He said that he saw the early signs of severe self-injurious behaviour, and although there were some medications that might be helpful, he warned me of their side effects and the fact that he might need a dosage strong enough to control the behaviour that would hinder his ability to learn.

Then he continued, to tell me about contingent electrical stimulation, CES. He told me it would work and how I would go about using it if I chose to. He told me about the cattle prod, how it worked with cattle, and how I would have to get the device and use it on my son, around age 7 at the time, and how I would have to use it in my own home, "behind closed doors," without the help of school or any other professionals because it was a controversial treatment. He said he wasn't recommending it, but that due to the severity of Terry's behaviour, he felt it was his duty to inform me. He said it was so controversial that if I told anyone that he told me about it, he would deny he had told me.

I chose at that time to continue with non-aversive approaches, restraint, and psychological consultation for myself. As the years passed, we tried various restraints, behaviour modification techniques and some medications. It was during our trial of Haldol that Terry experienced an increase in seizures. He had one seizure every three minutes or less. While weaning him off the Haldol, his neurologist suggested we continue down the list of drugs till we found one that worked. He said if we didn't find one that worked, the only other answer would be surgery -- lobotomy. I was devastated. I felt sick to my stomach and I didn't know where to turn.

Two months later, a friend of mine showed me an article about Amber and the use of the SIBIS in our local paper. I immediately called information and thank God Norma had her number listed. As she described Amber and her behaviours, I started to cry. Finally, I had found someone who knew at first hand what we had been going through. As she described Amber's behaviour, it brought back memories of what Terry was like at that age. I thought of what she had in store for her future if this treatment didn't work and I thought of what Terry's life could have been like now if this would have been available to him at that age.

After seeing the success with Amber, I sought to secure the treatment for Terry. Due to the interference of advocate groups in my area, it took me three years to secure this treatment for him, and I had to send him 800 miles away to get it.

I am happy to report that the use of the treatment helped get his behaviours under control enough for doctors to find and diagnose a medical condition that probably contributed to his behaviours, which has since been successfully surgically corrected. Unfortunately, through the years of self-abuse and his increasing strength, he has lost the vision in one of his eyes.

He still uses the treatment and some restraints, but to a much lesser degree. When he went to the Judge Rotenberg Educational Center, he was in four-point restraints, in a wheelchair, and wearing a hard-shell helmet with a full faceguard, and still doing chin to shoulder. Without these restraints, he would hit his head at the rate of 124 hits per minute and would exhibit other behaviours, such as head to knee, head to table or doorway, head to floor, finger pokes to the eye, chin to shoulder, kicking himself, biting himself and hitting and head-butting others with his helmet. Now he wears a wrist strap that we've been able to extend to eight inches so far -- we hope to be able to eliminate this completely some day -- a soft-shell helmet with a partial faceguard and a device similar to the device being used with Brian Singer in Dr Barrera's care in Blenheim. He receives an average of about four or five shocks per month. He is happy, healthy and finally learning to communicate with a voice output communication device. When I visit him, we enjoy going places and doing things. We go to restaurants, malls, whale watches, festivals, concerts and movie theatres. He will be returning home some time this year, and I'm looking forward to having him back in his own home.

I believe that many who could benefit from the use of CES are being physically or chemically restrained and that some have unfortunately already died from the injuries they have caused to themselves or the side effects of medications. If they cannot control their life-threatening behaviours themselves, then it is our duty to find a way that does not further risk their health or life. The number of people needing this form of treatment is very small, but that doesn't matter. If it was needed for only one person in the whole country, and that one person was your loved one, you wouldn't want someone to make it unavailable as a life-saving treatment option.

Thank you for letting us share our true stories about our loved ones with you. As your neighbours, we ask that you please consider the lives of our friends in Canada who would be affected by this legislation and vote to pass Bill 19.

Mr David Ramsay (Timiskaming): I'd like to thank the two presenters for taking the time to come before us, especially when you come to our jurisdiction to offer your suggestions and advice. The personal histories that you've outlined I think really bring it home to us that regardless of how repugnant certain treatments might at first hand appear, I truly believe we should never rule out anything that in the end might be the answer, even if it's only for a few. I support you in that belief and certainly will be supporting this part of the legislation.

Ms VanDuser: Thank you.

Mrs Boyd: Thank you very much. I should tell you that the literature and many of the testimonies of parents like you have been taken into account in terms of the previous legislation. I wouldn't want you to think that legislation forbade the treatment without a whole lot of concern around those kinds of issues. But you have admitted, both of you, in your presentations, that the concern is overwhelming in terms of this treatment and that many jurisdictions have taken the position that this jurisdiction has taken up until this point.

What I would ask you, as I asked the parents this morning: Since you are of the belief that this would only be a limited number of cases, would you think that going to the courts ahead of time and getting the permission to do this treatment, showing that in fact everything else had been tried and this was one of those very strange cases that couldn't be dealt with any other way, would be the appropriate way to do it, particularly if it could be done without the kind of cost to parents that we've heard from both your presentation and the presentation earlier this morning?


Ms VanDuser: Cost would be a concern to me because there are a lot of parents who could not afford an attorney. I don't know about courts, whether that's the appropriate --

Mrs Boyd: Or a capacity board. Either one, whatever mechanism we determined.

Ms VanDuser: We have a behaviour review committee, peer review and a human rights committee that approves or disapproves, and at that point, if, for example, they were all to turn the parents down in their request for this treatment, then the parents have an option at that time to go to court.

I'm not opposed to a check and balance system. I think you have to be very careful about that system. For example, Amber had a shunt. She did not have the time to go through some lengthy process. The reason it took us two years wasn't just thinking about it. We thought about it day and night. But we had to get into my husband's retirement in order to purchase the device, because it wasn't medically insured. But she really didn't have two years. She did a lot of damage during those two years that we could never get back. So I think you have to look at, if you're going to set up a review committee, the length of time.

Mrs Boyd: Timeliness is important.

Ms VanDuser: And emergency cases maybe would be an exception where you would have emergency meetings.

Ms Phelan: Like I said in my speech, it took me three years from the time I requested it to finally get it as a treatment in my son's program. During that three years, he did more damage and he has now lost the sight in one of his eyes. I think you have to really weigh what is an emergency and have provisions for that.

But certainly it should have to go through some sort of a review. It shouldn't just be available for just anyone. It has to be regulated.

Mr Klees: Thank you very much for your presentation. As you know, in the context of these hearings, we're discussing the issue of advocacy. I just want to thank you, just the fact that it's so very obvious that people like yourselves are willing to take the time to advocate on behalf of others who might find themselves in the same situation that you do. This bill certainly will solve the problem that you faced and that others have in our jurisdiction, because it does provide for the removal of the prohibition.

We are interested in ensuring that this treatment is administered in a safe way. So the questions that are being put to you are really for the purpose of ensuring that we do administer this in the safest way possible. From all the submissions we've heard, not one didn't go to every length possible to find other ways of dealing with the problem. As you say, people don't seem to be lining up to be using this or to have it used as a treatment. So the very practical things that we're trying to get a sense of is, how can we put the safeguards in place but at the same time make sure that we don't put people through unnecessary waiting periods, because it's obviously difficult on families, more importantly on the children themselves?

This has been very helpful, and what I hear from you is that you feel that certainly there should be some professional guidance, perhaps some restrictions in terms of ensuring that the proper assessment has been made, and only then should this treatment be applied.

Just in terms of again perhaps a practical recommendation that you might have for us, given your circumstances, what do you feel the process should have been that would have allowed you to go to this form of treatment in terms of the -- go ahead.

Ms VanDuser: I think the committees we talked about, I don't know if you'd call them the same thing, but we had the behaviour review committee, which was staffed -- and the parent was a member of every committee. But it was staffed by, say, school personnel, if the person's in school, someone from an institution. There were advocates also on the panel. It was basically made up of a variety of people from the community. The peer review was parents, parents of other children. The human rights committee was made up of a lot of the -- like the behaviour management committee, it was various numbers of people.

I think it's also important, again, when you talk about the committee aspect when we talk about the emergency situation -- and it was mentioned earlier about trying everything first. There are thousands of behavioural methods out there, and some children don't have time to go through every one of them. So I think that also has to be taken into consideration.

Mr Klees: Thank you very much. Again, thank you for taking the time to be here with us today.

Ms Phelan: Thank you for having us.

The Chair: Thank you very much again, Susan, Norma. We really appreciate your attending today.

Ms VanDuser: Thank you for letting us be here.


The Chair: The 2 o'clock submission, the Association of the Physically Handicapped, I believe it's a Mr Ralph Evans and a Katherine Webster. Welcome, Mr Evans and Ms Webster. Get settled. We've got time.

Mr Ralph Evans: We have arrived.

The Chair: Could we just make sure of the name of your association. Is it the Association of the Physically Handicapped?

Ms Katherine Webster: Yes, that is correct.

The Chair: Is there no geographical description?

Ms Webster: It is Windsor and Essex county association.

The Chair: Fine. Thank you. You may proceed.

Mr Evans: I must apologize first for not having any brief for the committee. Due to miscommunication, I didn't get the confirming letter of my time and date to speak, so I wasn't expecting to be here.

First of all, I'd like to introduce Katherine Webster, the executive director of APH. My name is Ralph Evans, and I'm a member of that organization. My disability is amyotrophic lateral sclerosis. I've had it for 14 years but I'm not confined to it. I am, as of right now, perfectly able and capable of making my wishes known to anyone with regard to my personal care, to my treatment, to any surgery that I may require. I do know that at some point in time, that communication skill, that being able to verbalize what my wishes are, is not going to be there.

The Advocacy Act, as it was -- and I know it is going to be repealed -- would have given me some way in which to make my wishes known should I require any kind of procedure in a hospital, any of my rights.

It could come out that it could be said to me, "Well, you can do that in a living will." I am not convinced at this moment in time that the specialist standing at my bed in hospital is going to take the time to go down to my safety deposit box to get my living will to find out what my wishes are with regard to any of the treatments, since his bottom line is that he wants an answer now.

Being able to communicate my wishes through an advocate, be it a family member or a friend -- and I must point out that all my family is in England, so that removes one aspect of my being able to communicate except to a friend. I would still like to see the act in place, even though it may need to be changed in some areas. But that act at least gave me some ways in which my wishes on my rights could be communicated through another person should I become incapable.


I'm talking off the top of my head here. I can't think of anything else that I need to say, so I'll try to do my best to answer any questions. Unless Katherine wants to say anything.

The Chair: Is there any submission you'd like to make, Mrs Webster?

Ms Webster: No, thank you.

The Chair: Okay. We have a considerable length of time, for the first time in history, I think, on this committee. I can't even calculate it. I usually don't go over five minutes, but you've got at least eight minutes.

Mrs Boyd: I'm very pleased to have an opportunity to talk to you a little bit about some of the concerns you have. I just need to be sure that I realize exactly where your concern lies. You do understand that you're able to name a substitute decision-maker and that you're able to have a power of attorney for personal care and that you're able to leave fairly detailed instructions about what you would want or not want to be done. Your concern is that you have no confidence that the professionals would necessarily make the effort to contact that person and to carry through.

Mr Evans: That's correct.

Mrs Boyd: You felt the advocates that were set up under the Advocacy Act were sort of your assurance that at that point in time your rights would be respected.

Mr Evans: Right, yes.

Mrs Boyd: In terms of that whole area, over the last number of years, you must have had quite a variety of experiences with professionals and have some sense of why you have that lack of confidence. Have you any way that you would like to talk to us a little bit about what it is, whether it's the time constraints or the resource constraints, the professional attitudes or whatever it is that gives rise to your lack of confidence the professionals would honour that?

Mr Evans: I have to say that I do have faith in the specialist and the physicians who look after me, but since they are not around me -- and I wouldn't say 24 hours a day, because that's an impossibility, but they are not around me adequately enough, I feel, to really get to know what my wishes are with regard to treatment. A personal friend or a family member would at least get to know me and would know the underlying source. I cannot ever envisage a situation where a specialist has come to me saying, "This is the treatment we need to do. Yes or no?" and then taking the time to hear what my wishes are. Even though they may be written down at some other point, in a safety deposit box or with a friend, I really don't think they're going to take that time to get that. Unless I carry all that information around with me in my chair, it's never going to get known to anyone other than my friends.

Mrs Boyd: Because although you have a condition that causes a fairly regular deterioration, there can be sudden changes, can't there, because of the various complications that can arise?

Mr Evans: Yes.

Mrs Boyd: So you're worried about the emergency provisions, I expect, and whether that would then respect your wishes.

Mr Evans: Absolutely.

Mrs Boyd: Several people have expressed that real concern that in an emergency situation -- and many people with varying forms of disabilities can face an emergency that may or may not have anything to do with a disability -- those wishes might not be respected. So do you share the concern that's been expressed to us that physicians ought not to be able to override unless their patient has had an opportunity to know their rights?

Mr Evans: Absolutely, yes.

Mrs Boyd: Do you have a sense that even the rights advisers as they have existed, because of course the advocacy part never got started, have been able to form some of that function, just the very fact that there has to be the pause and then the person to talk to?

Mr Evans: Yes. I was quite amazed. I strongly feel that the hearings should have been had first and then a decision made as to whether they should repeal the Advocacy Act. Don't repeal it first and then have hearings, because with the way the government has done it, they're not going to change their mind on what they have already said they're going to do. So I don't feel in any way confident at all that anything is going to be heard; I really don't.

Mrs Boyd: The concern we have is that there were very extensive hearings and very many years of study and a number of reports prior to the institution of the Advocacy Act.

Mr Evans: The O'Sullivan report is one that comes to mind.

Mrs Boyd: Sure. I guess you're very fortunate that you have friends you want to name and can trust, but I expect you know of lots of people who don't have that luxury and really, really need to know that there will be some official available to them under those circumstances.

Mr Evans: Yes, ma'am.

Mr Marchese: I wanted to simply say that we agree with the point that you're making. A number of people this morning have spoken, including Mr La Bute, who talked about, in his words more or less, that December 10, 1992, when we set up or proclaimed the Advocacy Act and the commission, was a day of reckoning for him -- and many others, I suspect -- that he felt that he was given an equal status now and that they were now on a level playing field. People felt that with that commission they were inside and not on the outside and less marginalized.

Other people this morning -- the Citizen Advocacy Windsor-Essex group -- talked about why we need this commission, why we need rights advisers, because they talked about their own limitations to be able to do things. They said that family and friends sometimes create the need for their support. They said that they don't have the authority to intervene often in a lot of cases to be able to deal with some of the abuses. Those associations that are there to serve people like yourself are not able to deal with those issues because they don't have the authority.

Without the authority, how can the government say, which is what they've been saying for weeks: "We want advocacy. We want somebody else to do it, but not the government. Everybody should have a responsibility for advocacy"? Although I think that's wonderful to say, if the government abrogates its own responsibility for advocacy, who's going to do it? It doesn't happen simply because government members are saying, "Well, we all have a responsibility."

I'm a bit frightened about these things, that, as they say, they will simply happen and that government should be out of the way of these things, that rights advisers were too interfering and that it's too costly a service. I disagree with them and I suspect you do too.

Mr Evans: I can remember, and I may be wrong in my numbers, that the Advocacy Act, the Substitute Decisions Act and the Consent to Treatment Act didn't arrive overnight. I can remember many, many years of heated debate. Is that polite way of putting it?

Mrs Boyd: Free and frank discussion.

Mr Evans: It just seems like overnight the government of the day has said, "We don't want it," without going back to at least those people who had input into it and asking, "Where can we change it?" first. Then, if they choose to do so, repeal the act afterwards. But it wasn't that bad that it had to be gotten rid of.

Mr Marchese: You're quite right, and although a number of people told us it wasn't a perfect commission, we realized that was the forum for us to be able to raise issues. We rallied around it. Yes, we could have improved it, and if it was too costly, yes, the government could have chopped that down but still allowed the commission to work in some form that would allow you some satisfaction.

Mr Evans: I can remember the fight between changing from a schedule 1 to a schedule 3.

Mrs Boyd: A very good fight.

Mr Evans: Yes.

Mr Gary L. Leadston (Kitchener-Wilmot): I appreciate the opportunity to ask some questions. Mr Evans, I assume that you've been a resident of Windsor-Essex for some time. I'm rather curious to know who would have advocated for you prior to the legislation being enacted in terms of your concerns that you've expressed this afternoon.

Mr Evans: As you can feel, I would have advocated for myself. I am quite able to do that on my own with the rights that were available to me at that time. I know that I can make my wishes known, as I've said, through a power of attorney or through a living will, but I don't think those would be made available to the physician standing at my bedside saying: "We have this treatment to do. Yes or no, do you want it?"


Mr Leadston: Again, I make an assumption that you would have a family physician who's familiar with your health and your condition. Should he not be aware of your concerns and your desires in terms of treatment?

Mr Evans: He should be concerned surrounding my disability, but I think the underlying essence that goes along with the decisions I make should be made through someone outside of a physician, either a family member -- as I say, mine are all in England, so it's got to be through a friend. I can speak more openly to them with regard to what I need. I don't think a family physician or a specialist is going to take time enough to listen to my reasoning as to why I would want or not want treatment.

Mr Leadston: Thank you for your openness and your frankness this afternoon. It's been enlightening.

Mr Evans: Thank you, sir.

Mr Klees: I'd like to just take a minute to perhaps clarify a matter. I think you expressed some concern that a doctor may override your personal wishes in the event of emergency treatment and your concern that there isn't some safeguard in place for you with regard to that. Is that correct?

Mr Evans: That's correct.

Mr Klees: I'd like to point you to section 24 of the Health Care Consent Act, which says -- and I think we've got the time -- "A health practitioner shall not administer a treatment under section 23 if the health practitioner has reasonable grounds to believe that the person, while capable and after attaining 16 years of age, expressed a wish applicable to the circumstances to refuse consent to the treatment." So there is a strong indication here, provision within the legislation that no treatment contrary to your wishes should be provided to you.

Mr Evans: But that's only if I can express that wish.

Mr Klees: Section 25 then goes on to deal with your other concern, and that is that, "If consent to a treatment is refused on an incapable person's behalf" -- in other words, by your substitute decision-maker -- "the treatment may be administered despite the refusal if, in the opinion of the health practitioner proposing the treatment," first of all, "there is an emergency." I'm assuming that if there was an emergency, you don't have a problem with the health practitioner saving your life or administering a treatment that, in his professional opinion, is in your best interest. Do I assume that correctly?

Mr Evans: He has the perfect right under the Hippocratic oath to preserve and save my life to the best of his abilities, but if he's performing a treatment or a procedure on me that I have already expressed elsewhere I don't want, and if I cannot adequately express that -- my disability at some point in time is going to take away my ability to speak -- then if I am in an emergency room and I can't adequately express my wishes even to say that my wishes are known elsewhere, then how is he going to know what my wishes are unless I can communicate that through an advocate? I really don't think he's going to take that time to find out who my advocate is or whom I've expressed my wishes to.

Mr Klees: You've certainly touched on a practical point here. The fact is that the legislation does protect you, though, to the extent that the health practitioner has the authority under this legislation -- and in fact, as you indicated, under his professional code the responsibility -- to administer emergency treatment. If, however, he is aware that there are instructions elsewhere, there's very express obligation on the part of this legislation that he find that person and get instructions accordingly. That's very clearly expressed in this legislation.

I wanted to clarify that for you because I think the concern you are addressing -- whether there is a formal rights advocate in place or whether it's a family member or a friend you've designated as a substitute decision-maker -- isn't the issue, because if the doctor can't find that person, it doesn't matter if we're paying $18 million to a horde of people to come to your aid if we can't find them. So I think the essence of your concern is addressed in the legislation and I just wanted to clarify that for you.

The other point I want to make: It distresses me somewhat when I hear my friend, Mr Marchese, repeatedly make the statement in this committee that the government is setting aside advocacy and suggests that because we're not implementing an act, because we're repealing an act, we don't care and that advocacy is not important us. For the record, I want to state this again very clearly: We believe vulnerable people need assistance. However, we cannot afford $18 million at this time to provide the kind of bureaucratic structure that the previous government intended. In fact, in these discussions --

Mrs Boyd: A tax cut.

Mr Klees: -- we have heard even Mrs Boyd make the statement that there are some things with that previous act that don't work very well. I think what's important is that people like yourself have the strong assurance from our government that we care very much about advocacy, that we support it, that we want to find the most effective and cost-effective way of delivering that and ensuring you're supported.

We happen to believe differently. The previous government believed that with every problem you could solve it with money. We happen, philosophically and practically, to disagree with that position. We happen to believe there are effective ways of providing advocacy that will not cost the kind of money, that will not be as time-consuming and bureaucratic as the previous Advocacy Act provided, and we will be pleased to work with you.

Mr Evans: Could I just ask a question?

Mr Klees: Sure.

Mr Ramsay: You're being lectured to right now.

Mr Klees: It's lecturing when I do it and when you do it, it's consulting. Let's be serious about why we're here. We're here to listen to these people.

The Chair: Thank you, Mr Klees. I think Mr Evans did have a point.

Mr Evans: With the $18 million aside, what specifically was wrong with the Advocacy Act that the whole thing had to be shelved?

Mr Klees: It was all based on a premise that family, friends were inadequate and that government could provide, and in fact government is the only source of advocacy. That was the premise.

Mr Evans: Your government said to us in regard to day care that family and friends should be the ones to look after those children when the parents need to go to work, and now you're saying on the other side of the coin, that family and friends have no business in advocacy.

Mr Klees: No, to the contrary. We're saying that family and friends should in fact play the leading role in advocacy and what I was saying was the previous government --

Mr Evans: But if that was in the Advocacy Act, why get rid of it then?

Mr Klees: We're saying it wasn't in the act. The previous act precluded families and friends --

Mrs Boyd: It did not. That's not true.

Mr Klees: It put government ahead of family and friends in the process. That was the issue.


The Chair: Mr Klees and Mr Evans, this has been great, but unfortunately the time is up for the government caucus, and now Mr Duncan will be summing up for us.

Mr Duncan: Thank you for the direction.

Mrs Boyd: He's got eight minutes to do it in, though, doesn't he, Mr Chair?

The Chair: He has nine minutes.

Mr Duncan: I have nine minutes. I don't want to engage in the kind of discussion I just heard.

I want to thank you for your presentation. Your thoughts are obviously very well put, and as always, your organization is thoughtful and comes at this with genuine interest and deserves to be accorded a certain amount of respect for your views.

As you know, we spoke at length during the election. I think I spoke with your group about our views on the Advocacy Act and our view that we felt there was need for change. We have some accord with a number of things that are contained in Bill 19; there are some problems with it. We've heard delegations throughout the province that have made a number of recommendations to us and we will take those to heart.


Our view, however, and it's been reinforced to me -- I've just been with this committee for one week; I'm subbing for another member -- is that in fact there are people who do need advocacy beyond a pat on the back and, "We support advocacy," and, "Rah, rah, rah." They're cutting now. They'll shut it down. My guess is you won't hear from them again. I think you know that and I think the people in the field know that as to this nonsense about, "Oh, we're going to talk more about it," if they wanted to talk more about it, they would have done something about it and proposed an alternative in the legislation they brought forward. To suggest somehow that you're going to hear from them again, well, we'll see. Maybe we can convene a hearing down here and can invite these members down here to discuss alternatives. We've done that before.

Thank you for your presentation. I appreciate it and please stay in touch with us in the weeks and months to come as we look for alternatives.

Mr Evans: Thank you, Mr Chair, for the opportunity.

The Chair: Not at all. Thank you for coming today, Mr Evans, Ms Webster.

Mr Klees: Mr Chairman, do we still have some time?

The Chair: No. Well, not you, I'm sorry.

Mr Duncan: I'm not yielding the floor to someone else.

The Chair: Each person gets an equal amount of time whether he uses it or not.

Mr Klees: Why don't we ask for some practical suggestions? We've got some more time.

Mr Duncan: We'll set up some special hearings and if you're interested in coming down, you can come down. You just said --

Mr Klees: We're here now.

Mr Clement: We're here now.

Mr Duncan: No, you've got a bill here that doesn't deal with advocacy. What we've got here cancels advocacy. You're the government. You propose, we dispose. You're silent on advocacy.

The Chair: Excuse me, I have the floor, just for a moment. I thank you, Mr Evans. We will proceed to our next submission.

Mr Evans: Have a good day, sir.


The Chair: The Canadian Mental Health Association, Windsor-Essex, Pay Hayward and Vince Carruthers. We have one half-hour allocated to your submission.

Ms Pat Hayward: I'm going to actually give the submission and Mr Carruthers, my colleague, may be able to add some examples and also help to respond to questions.

On behalf of the Canadian Mental Health Association, Windsor-Essex county branch, I want to thank you for the opportunity to present some of our views regarding Bill 19 for your consideration.

The Canadian Mental Health Association, Windsor-Essex branch, is an incorporated, registered, non-profit charitable organization locally established in 1971. This year we are pleased to be celebrating our 25th anniversary in providing mental health services in this community. We're one of 36 branches in Ontario, having membership with our provincial and our national associations.

CMHA Windsor-Essex has approximately 240 active volunteers who provide direct program support as well as board and committee services. The branch has a rich history in providing mental health services in this community through education, prevention, advocacy and support services. The programs and services provided are funded by government grants, United Way and supplementary fund-raising.

Bill 19, which proposes the repeal of the Advocacy Act and amendment of the Substitute Decisions Act, Consent to Treatment Act and Mental Health Act, requires the attention of every person in this province since passage of this legislation will affect the exercise of our basic rights.

Since 1976, CMHA Windsor has been operating an ombudsman program that provides a specialized function assisting individuals, families and service providers to access appropriate mental health services. We're a model program in Ontario for two reasons. The ombudsman services are provided in the three local psychiatric units and the ombudsman assists the individual through self-advocacy to access services and appeals across the municipal, federal and provincial spectrums, as well as providing support to family members and other caregivers and service providers.

Over the past 20 years, CMHA Windsor-Essex has supported the philosophy of recognizing individual rights and safeguards for vulnerable populations. As a community-based agency that has been providing services to vulnerable adults, both the psychiatric and seniors, we believe legislation for these purposes is essential.

The Windsor-Essex branch has supported the efforts of our Ontario division in its contribution to the development of several reports. Those have been listed for you. The branch has also contributed to the hearings on Bills 74, 108, 109 and 110, the advocacy, substitute decision-making and consent to treatment legislation, in 1991.

I'm sure you need no reminder, but we'd like to let you know, as others have said before us, that we have spend hundreds of hours in consultation and involved vulnerable persons in this community and in other communities within Ontario.

In 1990, CMHA Windsor-Essex became a member of the Ontario Advocacy Coalition which has been dedicated to the establishment of an advocacy system that works for vulnerable people in Ontario. Over the past five years, our organization has been an active participant in the coalition's work in initially pressing for the establishment of an advocacy system.

The Windsor-Essex branch has supported the efforts of our Ontario office in recommending deficit reductions as a target for the government in pre-budget submissions over the past several years. We acknowledge that major changes are required in the health care system and it's essential that we create a cost-effective system which makes the best use of our resources to meet the needs of individuals coping with a mental illness and their families. To that end, the Windsor-Essex branch has been working in cooperation with the local DHC, community partners, consumers and families to plan and implement creative options to cope with the economic environment and to improve services. We can all agree, however, that the rights of vulnerable people must not be compromised by economic restraints and budget cuts.

CMHA Windsor-Essex branch has grave concerns about Bill 19, in particular the intended repeal of the Advocacy Act and other amendments to the Substitute Decisions Act, Consent to Treatment Act and Mental Health Act, and we want to highlight those now.

Repeal of the Advocacy Act: While acknowledging the necessity of a more cost-efficient system, it's been imperative that the needs and rights of vulnerable adults be met in a manner envisioned in the O'Sullivan report and by the Advocacy Act. We are concerned that Bill 19 may further impede the rights of the most vulnerable people in our community, the people the legislation was primarily designed to protect.

The maintenance of individual and systemic advocacy is essential. We believe that repeal of the advocacy legislation will necessitate the replacement of the present Advocacy Commission with another structure, a structure we don't know, in order to maintain individual and systemic advocacy functions as well as the functions currently performed by rights advisers acting under the Consent to Treatment Act and the Substitute Decisions Act. Our organization is concerned that the maintenance of individual and systemic advocacy continue to be upheld to protect the most vulnerable people in our community.

In the news release describing the government's intent to repeal the Advocacy Act, the statement was made that "the central role played by family members and volunteers in the lives of vulnerable people should be encouraged and supported." We've heard that spoken of today. CMHA has always supported and will continue to support and recognize the advocacy role of various community members such as physicians, clergy, teachers, social workers and others, including the family. However, we have concerns that there be safeguards in place to protect vulnerable adults. Vulnerable adults, including seniors in cases of elder abuse, may be fearful and reluctant to report the abuse because of their real or perceived dependence upon the caregiver. It's imperative that advocates have expertise to engage these individuals so that they can determine the vulnerable adult's desires and advocate on their behalf.


Two of the powers given to advocates under the Advocacy Act, the right of entry and the right to some confidential records, should be maintained for trained advocates as it is only through the exercise of these rights than many isolated, vulnerable persons will be able to access an advocate.

Safeguards are needed even in situations where caregivers, volunteers and family members have the best of intentions: Caregivers, who in some cases have different views regarding the best interests of the vulnerable adult, may be relied upon to replace independent, trained advocates; the Advocacy Act was predicated on a system of independent advocates, who assisted or would have assisted vulnerable persons to express their own wishes, not the wishes of the advocate.

Along with continued community advocacy, which requires the government's financial support, our organization would suggest that some form of independent advocacy body be retained to effectively provide the three functions for which the Advocacy Commission was intended: rights advice, individual advocacy and systemic advocacy. This body should remain independent of the government and be put in place as soon as possible to avoid delays to and lack of serve for vulnerable people in Ontario.

CMHA Windsor-Essex branch supports that the government fund regional offices throughout the province. As originally contemplated in the O'Sullivan report, which may I remind you was named after a Progressive Conservative member of Parliament, local individual advocacy services and rights advice could then be provided by local groups, trained by central staff. Local services could then be tailored to local needs and volunteers used to supplement services at the local level.

The Windsor-Essex county branch concurs with the Ontario division's belief that a province-wide advocacy system is necessary to protect the most vulnerable people in Ontario. While we recognize that the system created under the Advocacy Act has been controversial and costly, we believe an alternative system should be made available as soon as possible.

Amendments to the SDA: CMHA Windsor-Essex branch is concerned about any proposed amendments to the Substitute Decisions Act which will remove advocacy services provided under the Advocacy Act. It is imperative that vulnerable persons have independent advice about any proceedings which could result in a loss of rights. Under the Substitute Decisions Act, proposed amendments to section 27 could result in a person alleged to be incapable to receive notice that the public guardian and trustee has applied for temporary guardianship of property. The vulnerable adult may not realize the consequences of this procedure, without advice, and lose the right of managing his or her property.

If there is a guardian of property appointed, our organization believes that the guardian must be accountable and provide a yearly financial statement to the incapable person whose property they manage. This has been removed through section 41, and although section 42 proposes that financial accounts are available through a court procedure, the incapable person may not be aware or able to finance this procedure.

The proposed deletion of subsections 46(10) to (12) from the SDA and amendments to section 49 would remove the present requirement for any explanation of a personal care decision to the grantor of a power of attorney for personal care, and the ability of the grantor to object to that decision. Such amendments could potentially result in an incapable person being treated against their will, although the person may be able to make an informed decision regarding the proposed treatment if it were explained to him or her in a way they could understand. Abuse of decision-making power by a substitute could also be possible under this proposed amendment, as no explanation of the proposed treatment to the grantor of the power of attorney is required, and the grantor cannot object to the proposed treatment.

As a community mental health service provider, we have advocated for the right of individuals to make personal care decisions in advance of incompetency and have those wishes honoured. The inclusion of section 50, the Ulysses clause, in the SDA addresses this need. However, the CMHA Windsor-Essex branch supports the provision of rights advice.

The ability of the grantor to revoke the power of attorney or refuse its registration has been removed from the legislation. These provisions were initially included as safeguards against unnecessary deprivation of liberty. Additionally, the new section, paragraph 50(2)4, would force the grantor to waive any right to review of a finding of incapacity. If the proposed amendments were to come into force, powers of attorney for personal care could be open to abuse, and the grantor would have no opportunity to object to the activation of the power of attorney or seek review of a finding of incapacity and could be detained against their will for up to six months if the attorney for personal care believed the grantor to be incapable of making personal care decisions and the grantor had requested an assessment within the previous six months.

The Windsor-Essex branch of CMHA has had a long-standing policy against branch staff being made guardian for personal care or property. Amendments to the Substitute Decisions Act would allow for caregivers to become court-appointed guardians if no other suitable person was available and willing to be appointed. It's our opinion that this is an inappropriate role for a service provider and can lead to conflict-of-interest issues.

CMHA Windsor-Essex branch is particularly concerned about the proposed changes to section 66, which prohibits the use of electroshock as aversive conditioning. Under the Bill 19 amendments, this provision has been deleted. While we are aware that electroshock for purposes of aversive conditioning is presently used in very limited circumstances, we do not believe that this should be given to any person without their consent.

Amendments to section 66 would delete the requirement that the guardian not use or consent to the use of restraint or confinement unless such use was consistent with the guardianship plan. Use of restraint or confinement would still only be permitted if necessary to prevent serious bodily harm to the person or others or to allow the person greater freedom or enjoyment. Our organization believes that this proposed amendment would expose the vulnerable adult to possible abuse, as monitoring of guardians acting in home care settings would be difficult, if not impossible.

The proposed changes to section 87 would permit the use of volunteers to provide advice and assistance under this act. As an organization that utilizes over 240 volunteers in direct service and advisory capacities, we acknowledge the key role volunteers can play. It is imperative that volunteers are provided with training and support through a coordinated and regulated system.

Amendments to the Consent to Treatment Act: The proposed amendment to section 2 of the Consent to Treatment Act to include care facilities within the purview of this legislation is an important addition. We believe that such expansion of the scope of the legislation will help to prevent abuse of some of the most vulnerable people in our society -- those in nursing homes, homes for the aged and rest homes -- by requiring informed consent for treatments taking place in such facilities.

Although the addition of section 11 may help to prevent delays in treatment, our provincial office has expressed concern about the proposed subsection 11(b) that may be alleviated with some rewording. As written, this section may permit a person to be moved to another geographic location or another care facility to which they would not have agreed to move.

There are sections in the new Consent to Treatment Act that have eliminated rights advice. We would suggest that a provision regarding rights advice be reinserted into the legislation to ensure that a person's rights are not removed without their knowledge or understanding.

Further, amendments to the Mental Health Act: CMHA Windsor-Essex believes very strongly that responsible and timely rights advice is paramount, especially in a psychiatric facility, and should not be left to regulation, as stated in subsection 72(4) of Bill 19. It is essential that persons who not only have the knowledge but also the proper training and expertise convey the rights advice to vulnerable adults in a psychiatric facility. Rights advice in a psychiatric institution should not be provided by anyone proposing, making or administering financial, personal care or treatment decisions for the person, or anyone who receives payment for providing treatment or personal care to an involuntary patient, including an employee of a facility that would be receiving payment.

Subsections 36.2(5) and (6) of the Mental Health Act currently permit patient approval of a board-appointed representative who may access and/or consent to disclosure of a patient's medical record and patient approval of board-determined conditions on the rights of the appointed representative. The proposed amendments would permit the above activities if the patient does not object.

If this provision is changed from an active approval to a passive lack of objection, representatives who may not have the patient's best interests in mind could consent to disclosure of record, because the patient may not have been aware of or understood the right to object, and these proposed amendments could potentially harm rather than help some of the most vulnerable people in our society.


If rights advice is removed from the Mental Health Act and left to be determined by regulation, enforcement will be extremely difficult. With no accountability, many vulnerable people may be deprived of their rights without due process.

In conclusion, Canadian Mental Health Association, Windsor-Essex county branch, along with other local agencies, community organizations, family members, volunteers and self-help organizations, have provided advocacy services long before the Advocacy Act and anticipate a continued need for the provision of our advocacy. The government can support the needs of vulnerable adults by making a provision for conflict-free, timely rights advice and advocacy, mandating the power of right to entry and access to confidential records to support the most isolated, vulnerable adults who otherwise would not have access to an advocate.

Mr Clement: Thank you very much for your presentation. Although you don't need me to do this, I just wanted to put on the record I'm absolutely impressed with just the brief comments you had about your ombudsman program. It appears that since 1976, you've been an integral part of advocacy in this area. You don't need me to say this, but it's very impressive, and certainly if you haven't been contacted yet, I would love, for our ministry, Citizenship, Culture and Recreation, to get hold of you to talk about your ombudsman program and see whether that is something that can be emulated in other jurisdictions.

I wanted to pass along to my colleagues as well, but I did want to talk a bit about the concept of advocacy and who will -- we all agree that advocacy is necessary in our society, and the question is who delivers it and how best to structure it. I wanted your response to a quote that I'm going to take out of the O'Sullivan report, because I think it infuses some of our concerns. O'Sullivan says -- it's on page 46:

"Advocacy should not be primarily adversarial in nature. Indeed, little is to be gained through an over-zealous and abrasive approach, and the costs can be high: overt or covert sanctions against residents and patients, stress, undue expenditures of time and money, increased resistance to subsequent requests and alienation of those upon whom the vulnerable person must rely."

I think those were very wise words, and I guess our concerns were that we were heading in that direction. That's our perspective. I'm not saying that's everybody's perspective, but that was our perspective.

Is there a way to balance? Governments inherently are intrusive by nature. That's just the reality of a government, of state action. By working with volunteers such as yourself and groups that are effective in the community, is there a way that government can be supportive of advocacy without having the intrusiveness?

Mr Vince Carruthers: I think there is, and back in 1987 -- and we welcome your invitation to participate in further discussions with regard to our ombudsman program -- we made a submission. We've had input in regard to this since 1987, even before that time, so we welcome the opportunity to give more information. There are other alternatives right within this book on how Father O'Sullivan had made other suggestions.

Mr Clement: Yes, there are a number of models that are in here that are very interesting and perhaps should be pursued; you're quite right.

Mr Carruthers: Yes, and that is why we're thinking that the repeal of the entire act would put us back several years. We would have to then perhaps commission another such document so we could get started again with advocacy, and I don't think that is necessary. I think just amending the Advocacy Act to perhaps follow some of the suggestions that you have would be helpful. But repealing it I think puts us back several years.

Mr Clement: I think that we can perhaps accomplish some goals. Sometimes you don't necessarily need legislation for government to be involved in good acts, and perhaps we need some flexibility to work with groups without the legislative framework. As I say, governments tend to be intrusive and can cause more harm than good when they get involved, even if it's for the best of purposes.

The Chair: Mr Klees and Mr Parker, I'm sorry. Mr Clement took all of your time.

Mr Clement: Sorry.

The Chair: Mr Duncan, please.

Mr Ramsay: I can't believe it.

Mr Duncan: You had indicated that as part of the O'Sullivan report, you had been consulted about it and were asked to participate. Is that correct?

Ms Hayward: Yes.

Mr Duncan: And before the introductions of Bills 108, 109 and 110, you were consulted and involved in the development of that legislation by the previous government?

Ms Hayward: That's correct.

Mr Duncan: Have you been consulted at all prior to this legislation -- by the government?

Mr Carruthers: Yes, we have. Through the Minister of Citizenship's office, we have been identified as a resource for some future advocacy programs. However, again we're being consulted in regard to what we could do differently.

Mr Garry J. Guzzo (Ottawa-Rideau): The answer to the question, though, is yes.

Mr Carruthers: Yes.

Mr Guzzo: Tell Mrs Caplan.

Mr Duncan: So you were consulted about Bill 19 before it was introduced?

Mr Carruthers: We weren't consulted in regard to Bill 19, we --

Mr Duncan: Oh, you weren't consulted with regard to Bill 19.

Ms Hayward: Not in regard to the bill. We were consulted as to getting more information on the type of services we provide.

Mr Duncan: I had one question I wanted to ask you about the psychiatric patient advocacy office and whether you have familiarity with it. One of the ideas that we've conceived is in terms of providing some expanded mandate for the PPAO to not only serve a facility but to serve a variety of programs and in effect take up some of the advocacy functions. Have you any thoughts about that? Do you think that might be one basis of an expanded advocacy service?

Ms Hayward: Certainly, one of our main concerns is conflict of interest. There needs to be a system put into place so that organizations such as ourselves are not presented with a conflict. There may be some potentials for that office to provide advocacy within other jurisdictions besides where a psychiatric hospital is, certainly.

Mrs Boyd: Mr Clement suggests there's no reason to have legislation to cover this, but you've been very clear in your submission that the issue about right to entry, the issue about the access to records, may be necessary in order to advocate properly, and certainly we've heard that again and again.

The other issue that you raise is that consistently you talk about rights advice needing to be built in. I assume you mean the legislative protection people have when we legislate that they are entitled to rights advice and that that's what you are talking about and that's what you're concerned about even in the Mental Health Act, that that rights advice is going to be regulated rather than legislated and that's one of your major objections to this, that this protection is not there in law, so it can't be challenged in law.

Ms Hayward: That certainly is a concern that we hope we have identified in our presentation. Rights advice is paramount, and unless it is legislated and there is a legislated role for someone to be able to gain access, there will continue to be vulnerable persons who -- and organizations such as ourselves, even though we work with many volunteers and have staff members who can provide support, cannot get access unless there is something legislated.

The Chair: Mr Marchese.

Mr Klees: Mr Chairman, I have a point of clarification.

Mr Marchese: Could you do that after?

Just some quick points that I wanted to agree with you on. Many, many, many deputations have said much the same, worded differently perhaps, but the concerns don't seem to be very different. In the end, if the government disregards some of the suggestions many of you have made, I will be completely shocked, because there are consistencies in people's concerns.

Areas around confidentiality have been talked about by many groups. Your concern about "Rights advice in psychiatric institutions should not be provided by anyone proposing, making or administering financial, personal care or treatment..." has been mentioned consistently by virtually every group that's come before us. The whole point about having service providers being made guardians has been mentioned as a concern by many, even though the government members think, "Well, if the court decides it's okay, then it's okay." Many people still believe that it's not, that it's a problem, it's a conflict.

And you made a whole host of other suggestions that other people have also consistently agreed with your submission as well.

The point of right to entry: That's what groups have been saying. If they have no authority to deal with areas of abuse, then we've got a problem. The flexibility the members talk about: I don't understand what it means. The training of volunteers: I don't understand what that means. What people need, what people have told us over the years that they needed, was an advocacy act, with advocates and rights advisers. For years they have told us that this is what they wanted.

If they were unhappy with that act as it was, they could have reduced it. They already cut $7 billion or $8 billion out of that commission anyway. They could have cut further, I suppose, and they would have, but they could have left some skeleton out of that program that would have at least made people happy that they would have had something.

They're taking all of that away. There will be no advocacy left. They say that there will be advocacy. I'm not sure what they're talking about. The government is getting out of the field of advocacy, because, Mr Clement says, "The government is too intrusive by its very nature, so we shouldn't provide advocacy as a government; it's wrong," I presume they're saying.

It offends me. It really, truly offends me that government will do nothing for advocacy or rights advisers. They have an obligation to tell us what they mean by advocacy, and they haven't told us. They have an obligation to tell us what they're going to practically suggest, and they have not told us. It would have been nice.

I'm sure that you would agree with that.

The Chair: Thank you very much, Mr Marchese, Mr Ca_ruthers and Ms Hayward. We appreciate your presentation.

Mr Clement: He has one point of clarification to make.

The Chair: A point of clarification on a Friday afternoon. How can I help you?

Mrs Boyd: It's only Thursday.

The Chair: It feels like Friday.

Mrs Boyd: It feels like it, doesn't it?

Interjection: Boy, does it feel like Friday.

Mr Klees: Is it Friday in Windsor?

Ms Hayward: We have our own calendar.

Mr Klees: A point of clarification, if I might, and I think this would help you: I think your concern with regard to having regulations -- this was your last point -- that it wouldn't be enforceable, I just want to point out to you that under the Mental Health Act there is a provision for offence issues incorporated into that legislation, so non-compliance with regulations would actually result in an offence under that act. So there is enforcement of a regulation in place there and I think it would probably solve the --

The Chair: Thank you, Mr Klees.

Mr Parker: Mr Chairman, if we're into clarifications, I have just three brief points to make.

The Chair: Around this table, no one is terribly brief. You have one minute.

Mr Parker: If I could refer you to page 4 of your submission, I just wanted to give you some comfort on three points that you make on page 4 of your submission.

You comment that there is a lack of financial accountability under the new regime. The existing law required annual reports to be given. That has been removed.

There is a still a regulation-making authority under subsection 60(2) of the bill that's proposed. I'll just refer you to that section, and that section addresses the point you have raised.

You expressed the concern that decisions can be made without the knowledge and against the interests and wishes of the incapable person if a substitute decision-maker has been appointed. I just want to refer you in that context to section 66 and section 68 of the Substitute Decisions Act. Those sections safeguard those points, and those sections are not amended under the bill. So those sections survive Bill 19. They are to be found in the Substitute Decisions Act.

The Chair: Thank you, Mr Parker.

Mr Parker: And the right to revoke the Ulysses contract --

The Chair: No, Mr Parker, I'm sorry. I've got to ask the other side now if they have any points of clarification.

Mr Carruthers: I was just wondering if perhaps the government could identify, perhaps, why there haven't been any provincial offence charges in relation to the Mental Health Act since 1986, when that was put into place. I would suggest that it is because the people are still very vulnerable in the institutions and they need advocacy in order to assist in even laying a provincial offence.

The Chair: Okay.


The Chair: To be fair, are there any points of clarification?

Mrs Boyd: I think the presenters are well aware that an ephemeral regulatory authority, without the regulations, is little comfort.

The Chair: I thank all members of the committee for their cooperation in this long and trying week. We are adjourning to 9:30 am on Monday, February 19, 1996, in committee room 1 at Queen's Park.

The committee adjourned at 1455.