 Good evening everyone and welcome. Thanks for joining us for this talk on adult capacity and decision-making this evening. I'd like to begin by acknowledging that we are in the Migamawagi, the ancestral and unceded territory of the Migamawagi people. My name is Ruth Strubank and I'm the Executive Director at the Nova Scotia Association for Community Living. NSACL is a provincial non-profit committed to ensuring that individuals with intellectual disabilities and their families have the supports required to live full and inclusive community, life in community. NSACL will be celebrating its 64th year this year and I think what's most important to note is that it began in Halifax with a group of families who came together that decided that they wanted their sons and daughters to have. It began with inclusive education long time ago so there you go a little bit of history. We're a part of the Canadian Association, we're part of the Federation across the country. All provinces and territories have associations for community living and in a little while we'll hear from Anna Macquarie from Inclusion International, the mothership. I don't know about that. So tonight we'll hear from the three panelists and we'll talk about adult capacity and decision making and this is an important issue in the disability rights community but frankly this is an important issue for all Nova Scotians and all Canadians. This law impacts every single person in this room potentially at some point in their life. We believe that a person regardless of label or perceived capacity should have the right to exercise control over their own person. Think of a time in your own life when the right to make a decision was removed. How did that feel? Do you want anyone to take over making all your decisions? I suppose maybe some days that answer would be yes but probably not always. We all aspire to have control over our lives. People can have power when they are valued and respected. How support is provided is the issue. We must enable people to have power rather than taking power away. Power on and power with, that's what we want to see. So let me just share a couple of things around what does the right to legal capacity mean. Community living is fully realized only when people have power over their decisions. Access to supports may be required to exercise legal capacity and access to supports is referred to as supported decision making. Government and all people have a role to play. This past December I had the opportunity to attend the 8th annual policy forum inclusion realization of the right to capacity for persons with intellectual disabilities that was facilitated by the Canadian Association for Community Living and their partners People First Canada. And the opening remarks from the President of People First Canada, Corey Earl, still stand out in my mind and I just wanted to share a couple of things that he spoke with First Voice around this very issue. So what Corey began his conversation was about what it means to him. And he said, when people make decisions for others, it means we get placed to live some place we don't want to live. It means we get a poor education. We cannot spend our money the way we want. We are told where to work, who to play with and where to play. We have no control over our lives and many people get stuck there. There's just a couple of other things that I want to mention just about what's happening across the country and Canada because we'll get a little more context for Nova Scotia in just a minute. There are an estimated 880,000 to 1 million Canadians with disabilities who have someone who helped them make decisions daily. The more severe that a person's disability is, the more likely it is that one has someone to help him or her make all those decisions every day. Canadians with cognitive disabilities are more likely than Canadians with physical and or sensory disabilities to have someone help them make daily decisions. People who make decisions with legally recognized supports have reported much success and empowerment. Knowledge about supported decision making is critical. The lack of knowledge of course results in less use. No significant evidence of abuse in relation to supported decision making practices exist in Canada. Safeguards are critical for there to be confidence in support of decision making. As Canadians and as Nova Scotians in particular, we don't equally share the same rights to make decisions in our lives. The current law Nova Scotia does not represent the full range of supports and possibilities. Alright, so let me introduce the panelists. To my right, Archie Kaiser. Archie is at Dalhousie. Archie is a professor at the Schulich School of Law with a cross appointment to the Department of Psychiatry. In the Department of Psychiatry, he represents legal issues in psychiatry. In the residency training program, he teaches criminal law, criminal procedure and mental disability law. Civil and criminal. He has been a director of several organizations including the Canadian Mental Health Association, Nova Scotia Division, the Healthy Minds Co-op and Reachability and was a member of the Mental Health and the Law Advisory Committee of the Mental Health Commission of Canada. He is currently a provincial advisor to People First Nova Scotia. Sitting on Archie's right is Anne McQuarrie. Anne is Inclusion International's Director of Global Advocacy and Human Rights. She has a master's degree in Human Rights from the University of Essex. Her focus is supporting the realization of the rights and full inclusion of persons with intellectual disabilities and their families around the world. Anne worked actively on the development of the United Nations Convention on the Rights of Persons with Disabilities and continues to work with its members, other disability organizations and government partners on making the CRPD real and meaningful for people with disabilities and their families. And then Sheila Wildman on the end. Sheila is an associate professor here at the Schulich School of Law, where she teaches administrative law, public law and jurisprudence. She has written book chapters and articles on legal capacity in Canadian law and under the CRPD. In this and other work of subjects such as consent to psychiatric treatment and public adult protection, Sheila's central research question is, what role law or litigation may play in challenging coercive state responses to disability and promoting human rights to autonomy and community inclusion in a context of respect for diversity? Please join me in welcoming the three panelists. Thank you Ruth for your generous introduction of us all. It's my job tonight to provide you with some historical context for the later discussion, which I'll also provide you with on the new law in Nova Scotia. And then as the irresponsible male law professor, I'll sit down and the two women on stage will clean up the mess that I've left. Seems normal, doesn't it? So I do want to talk then first about the past that the Supreme Court of Canada has emphasized that we have to live with in our country, that persons with a mental disability have been systematically isolated, segregated from the mainstream of society, devalued, ridiculed and excluded from participation in ordinary social and political processes. The history of people with disabilities in Canada is largely one of exclusion and marginalization, and we're talking here as the court has recognized about exclusion from the labour force, opportunities for social interaction and advancement, and people also being subject to invidious stereotyping and relegation to institutions. To bring it home to us and to remind us of our sad roots here, I have a few slides here where adults with alleged decisional impairments have had to live. The poor house here at the top left was at the corner of Robie and South, just down the street from us hundreds of feet away. 31 people died in 1882 in a fire there because obviously it wasn't properly safeguarded for persons with disabilities. It was replaced with the poor house that emerged on University Avenue that was only demolished in 1972. This is the remains of the Halifax County Home and Mental Hospital as it was called, later called the Halifax County Regional Rehabilitation Center. It existed from 1887 to 2002 where people lived in a congregate setting forced into institutional living. And finally there's a more contemporary institution called Quest, a Society for Adult Support and Rehabilitation of which more of it later. But I do want to also draw your attention to a case that's currently being litigated before the Nova Scotia Human Rights Commission where persons with intellectual disabilities have been kept in this facility, Emerald Hall in the Nova Scotia Hospital, far longer than their medical and social needs ought to have dictated. Beth McLean is one of the complainants but there are others who alleged the simple truth that they should be permitted to live in small homes in the community with assistance. So that's what we've had in terms of local institutional history. But I want to talk also about our history of legislation because the law has not been the protective and empowering institution that it ought to have been for persons with disabilities. Indeed the history of guardianship law for persons who are allegedly incapable of making decisions has very ancient roots, going back to 449 BC and NBC, permitting control over people by their families. And in England as from the 13th century the Crown assumed control over persons who were referred to as idiots and lunatics. In that terminology we've had in Nova Scotia until relatively recently. There was a gradual melding of legal controls over persons deemed idiots and insane over the years. We inherited these prejudices in Nova Scotia in our legislative framework. The Lunacy Act, and here I'm quoting for the 1923 version, provided for the appointment of a guardian over a person who is incapable of taking care of himself with the guardian having the care and custody of such insane person and the management of his or her estate where the guardian had full uncontrolled authority over the individual's daily life and liberty and their finances. This was derived from the English Lunacy and Lunatics Act and the County Asylum Act. The Incompetent Persons Act, which is what we've just gotten rid of here in Nova Scotia, here I quote from the 1989 version continued this interventionist and coercive tradition. It provided for the appointment of guardians over insane persons who are incapable from infirmity of mind of managing their own affairs with full powers over that insane person just as they were under the English Lunacy Act, permitting the guardian to control everything. The Incompetent Persons Act also provided for the apprehension of any lunatic at large, the committal of insane persons and dangerous idiots to the Asylum for the Harmless Insane and the taking of insane persons or dangerous idiots under the care and protection of any relative guardian or friend. Even this terminology under the old act was not changed until 2007. What was wrong with this statute? Well, it's pretty clear for most of us beyond the stigmatizing labels that the Nova Scotia Law Reform Commission was absolutely right in 1995 when they said it contained offensive and stigmatizing language. It imposed no limits on guardianship orders. There was an over emphasis on property and it provided for no monitoring over guardians. There was too much paternalism according to the Nova Scotia Law Reform Commission. There was the potential for undue interference in decisions about daily living and health care. There were numerous charter of rights and freedoms violations and they just said, repeal this legislation. What did our government do? Nothing. There were no meaningful changes in the legislation for over 20 years until the case which I'm about to discuss with you now. This man, Landon Webb, was responsible for, with his supporters, the demise of the Incompetent Persons Act. He had been subject to an order since he was 19. He was in his late 20s when this case was brought. Required to live in rehabilitation centers. Even the subject of a police request for helping and looking for him when he left the facility in 2015. These are entries from the Chronicle Herald and even his local MLA asking for the public to reach out to your local police department to make sure this person was apprehended. Landon said that he was simply entitled to equal treatment. And when he was picked up by the police, he said, they arrested me, put me in the jail for about an hour and a half, handcuffed me like I was a criminal. And he said this simple thing. I never did anything wrong. Landon's mother took exception even to the reporter who interviewed her son for this article that I quote from. Saying it was inappropriate because he was incompetent. Landon said, I have the right to free speech, the right to live where I choose, just like anyone else. He went to the quest facility that I mentioned to you before, a contemporary institution, where there are further restrictions on his fundamental freedoms. Justice Moyer from the Nova Scotia Supreme Court granted an order allowing him access to mail, telephone, communications with his lawyer, which had previously been cut off. His parents said that he didn't understand the guardianship order and those who were claiming to assist him, including his lawyers, were just complicating matters. So in 2016, the Supreme Court of Nova Scotia had a constitutional challenge for the Incompetent Persons Act. And the government wisely conceded that the legislation was unconstitutional. Justice Campbell didn't have to do the heavy lifting. He would have done had they not made that concession, but he did observe that the law was overbroad. It went too far that many people with impairments are not incapable of managing their own affairs because competency is not an all or nothing thing. This resulted in the Incompetent Persons Act being declared invalid in 2016 and the government being given a year to prepare a new legislation. We now have new law in place, the Adult Capacity and Decision Making Act as of 2017. I'll explain it to you and then the other panelists are going to talk about some of its limitations. At least this legislation, everyone must concede as an improvement over the Incompetent Persons Act. It had to be because the other act was simply inconsistent with our Charter of Rights and Freedoms. So it has a preamble that is more attuned to values that talks about the adults of dignity and autonomy and then entitlement to respect, the presumption of capacity, and the entitlement to any intervention being the least restrictive and least intrusive. Unfortunately, it doesn't mention the Charter of Rights and Freedoms directly, nor the Convention on the Rights of Persons with Disabilities of which more soon from the other panelists. It does have a purpose of declaration. It recognizes that people may have impairments in capacity and it talks about the act having the intention of providing a fair and respectful legal framework which had been utterly denied to persons with disabilities before. It is said to promote dignity, autonomy, independence, social inclusion and freedom of decision making. These are all worthwhile principles and important ones. Whether the legislation does it is another thing but it is said also to ensure the least restrictive supports and interventions. It has, as modern legislation often does, a code of interpretative principles where the legislation is meant to be seen by anybody who uses it or is subject to it as being a law where adults are entitled to make their own decision on everything until incapacity is shown. It wisely says that risky or bad decisions don't demonstrate incapacity. If they did, how many of us would be deprived of our civil rights? It says that persons with disabilities are entitled to communicate by any means that works for them. And it talks about again in situations of incapacity the adults autonomy being preserved by ensuring the least restrictive and least intrusive intervention. I don't know whether this chart is visible for you. I tried to just make a simple procedural flow chart basically what happens in this legislation and what I'll be explaining to you is that there's an application to the Supreme Court of Nova Scotia. Notice is given to the adult and others and the application has to include a capacity assessment and a representation plan. A judge then determines whether there has been a proof of incapacity, a proof of the necessity of decisions being made for a person with disabilities and he or she has to consider whether less restrictive measures might work in the circumstances rather than making an application under this legislation and whether the adult is in need of someone to assist him or her in making decisions. And the judge has to consider the wishes of the individual, the assessment report, the plan for the representation of the individual and the areas of decision-making needs for that individual and the objective of the application. The representatives who are appointed have to agree to accept the role. They have to be suitable persons and if persuaded the court then is able to make an order which provides limited authority. It's different from the former legislation where a guardianship order involved plenary control over everything for a person who is subject to legislation under the Incompetent Persons Act. Control over their finances, control over their person. The new idea is that there will be the ability to make decisions on behalf of the person but only if it fits within the legislation and by order of the court. So the limited authority that can be given then relates to issues that concern capacity, it has to be necessary and it has to be least restrictive. There's associates, activities, employment and education and there can be further restrictions on the adult but only with the court order. Adults are meant to be kept informed if the judge has persuaded that an order should issue and there's guidance for representatives on how to make decisions and there is the possibility of both reviews of existing orders to change them where necessary and appeals if there's an error in making the order. So quickly then through what's left. An application for a representation order then in greater detail goes to the Supreme Court and there is the necessity of setting order representation plan. The order would deal if it's given with financial matters, obvious enough but also with the person's well-being and here and I think Sheila will develop it, this concept is a critical one that provides rich advocacy potential because it talks about the maximization of physical health, personal autonomy and social inclusion and participation. Any order has to be oriented towards those goals. The applications as I mentioned and this includes all the section references from the legislation have to include the assessment and a representation plan that sets out how the representative will manage the adults well-being and financial matters and give notice and so on. The orders may be granted upon these things being shown in the application that there is a lack of capacity the adult needing to make decisions less intrusive matters measures not being effective and the adult actually needing a representative. The court considers as I mentioned before in the flow chart the wishes of that adult the capacity assessment report the representation plan and the matters where decisions need to be made for the person's life unless you have a target for it otherwise you're back to the situation of the incompetent person's act. Capacity assessment and assessments and reports may proceed with consent if the person has the ability to consent to it or by court order and the adult obviously in our society because there is the right to silence for all of us has the ability to refuse to participate although the preparation of reports of other sources the assessment reports are required to be communicated to the adult he or she is still required to be involved notwithstanding that the report may conclude that the person is incapable and the assessors have to consider the likelihood of the person gaining capacity and the supports or assistance which would permit self-management without a representative so they have to allude to the potential for the person making perhaps with support representatives you will recall and have to consent they have to satisfy the court that they are suitable persons that they'll be governed by the views and wishes of the adult that the relationship between the adult and the person is suitable and that the person can actually exercise the authority that would be given to him or her by the court making an order as I mentioned there is parsimony here it depends out authority it's not just do anything you want the way it used to be the authority granted has to be specified by the court it has to relate to an incapacity issue where there is a necessity to make decisions and again there's this pervasive notion of it having to be the least restrictive and least intrusive form of support and although the court would be bound to do this anyway the court is required by a statute to consider the fundamental rights the range of authority as I mentioned can still be very broad because we're still talking about taking decision making authority away from the person so it can relate to living arrangements associates social and recreational activities employment education licensing litigation there are some areas where power can only come from the court that the guardian or representative does not have the authority to make decisions or aversive stimuli or tissue removal or to make gifts and it can't be amended except by the court's permission adults are required to be informed and involved no matter what the court concludes about their capacity to make decisions and representatives are required to make the least restrictive decisions that promote self care they inform representatives and they're not realizing them of options and any decisions that have already been made representatives don't have unfettered freedom to do whatever they want when they are given an order by the court they have to follow the capable instructions of the individual where he or she is still able to do that they have to act in accordance with the person's wishes in the absence of a capable instruction if it's reasonable according to the legislation if there are neither instructions nor representatives they have to follow the person's values and beliefs and if none of the above apply in terms of providing guidance for the representative they have to promote the well-being that critical concept I mentioned and the person's financial interests the representatives have to keep accounts to ensure that they're being responsible not wasting the assets and not defying the order of the court and abusing the person's rights as well there are the opportunities for reviews of orders that are mandatory as required by the justice's order where there are significant changes for the adult where the representative herself becomes less able or suitable and the court may then as I mentioned decide to continue an order to vary it or to rescind it depending upon what the circumstances are and there are opportunities for appeals to the Nova Scotia Court of Appeal to ensure that any legal errors can be scrutinized by a higher court there are regulations that are an essential part of understanding the whole legal framework that are subsidiary forms of legislation outside the statute but empowered by it designating physicians and psychologists as assessors with other professionals having to have training before they can do assessments and be established for conducting assessments the regulations also specify there are duties to advise the adult of certain matters within the regulations it talks about persons who may be present during an assessment including a support person so the subject is not on his or her own and it talks about the standard for assessing capacity the regulations also specify the contents of representation plans and provide guidance for affidavits they have a number of other issues that are covered that enable complaints to be made and describe a complaints process and investigation so that again people aren't just left there without there being accountability in terms of these orders so I'm at 19 minutes and 15 seconds I think Excellent Archie well done Thank you, thank you, thank you I have provided you with a quick tour of history and the legislation I have not meant by any means to say that this legislation deserves the utter condemnation that the incompetent persons act did it doesn't it is a better piece of legislation but as you'll hear from my fellow panelists it's not good enough and it's not good enough in some very fundamental ways that I still think require our province to catch up with modern values both modern constitutional values and this law and that's what you're going to hear about next thank you so much Good evening my name is Anna McCory as Ruth mentioned I am with Inclusion International and we are the global federation of people with intellectual disabilities and their families we have about 200 members and about 115 ish countries around the world by and large we are organizations of people with intellectual disabilities and their families and their focus has been around how do we support people to live and be included in their communities our history much like NSACL is not that different than all of our members around the world that typically starts with families coming together to try and create a better life for their sons and daughters the issues we tend to come up with almost right away are inclusive education living and being included in your community very similar to the Emerald Hall case that Archie was referring to no matter where we are all of the time is the right to make decisions and to have your voices heard so when Inclusion International began being part of the negotiations of the UN Convention on the Rights of Persons with Disabilities we did a lot of work with our members to find out what mattered most to them and that was a core issue that had come forward and it's about recognizing that all people have the right to make decisions and have those decisions respected and that may require access to decision making where assistance in exercising that legal capacity is required and that we need to establish supported decision making legislation and we need to reform guardianship and we know that the development of practical conditions are required to make supported decision making successful and as we've moved from negotiations to implementation and I think a strong case for what we're seeing here in Nova Scotia is moving forward from practice and what we continue to hear around the world is families, individuals, governments people struggling with that practical piece the how to piece of this but what we know for sure is that when we don't get it right without a voice people are powerless they have no control in their lives and they have no agency so why does it matter I think it's important I have some pictures that are up here to understand this issue every day who helped me understand that this is not some random far off really technical piece of legislation this is people's lives that we're talking about and as Archie was saying in his piece about sort of what does guardianship law or the new capacity legislation cover really it can cover who you hang out with what you do in a day where you live these are big things and these are real people that we're talking about so it matters because we know when people are valued and when people have control in their lives they are safer in our communities they are more included in our communities when people have more control in their lives they are safer and more respected so a couple of pictures here in the upper left corner of that is my colleague Kiera I don't remember the day of that and she is a woman with an intellectual disability and they had lots of challenges in being able to understand she wanted to get married she wanted to have a family that's a key piece of who she is and these are the types of decisions she has the right to make my colleague and close friend Charlie is one of the greatest teachers I've ever had in my entire life Charlie has very had unfortunately Charlie passed away a number of years ago he had very very significant support needs Charlie did not use words to communicate he did not communicate in ways that people who didn't know him would understand it was his family then people and trusted people around him that could help articulate Charlie's will and preferences and without that Charlie was extremely vulnerable to people just making decisions for him a story I share a lot about Charlie is his decision that he was ready to move out Charlie's the youngest of three boys and as families are prone to do siblings grow up, go to school, move away so his older brothers grew up went to school, moved away and Charlie who used a wheelchair to get around in his house started going to the back of their front door and knocking on the door I wouldn't have known what that meant truth be told it took his parents a little while to figure it out and he was saying it's my turn I want to get out this door I'm next, they left I'm leaving too kind of thing and they worked for years to make sure that they found a place that was respectful of what Charlie would want Charlie's mom who's an amazing advocate very easily found another family she knew the mom they got along well the kids had similar support needs you could line up staffing all of those things but Charlie knew she couldn't do it because the daughter of the other person did not like loud noises one of my favorite things about Charlie is that guy loved opera more than anything in the world and he loved opera loud and all the time and it wouldn't have been the right place and that would not have been a decision that respected what he wanted in this corner here so the bottom right corner is a picture from the woman in the front is from Nicaragua her name is Hayde she's talked a lot about she knows that she needs some help when she goes into a medical appointment she wants someone who can come in with her and help her understand what's going on who can maybe explain things in non-medical ways but she wants that doctor to talk to her and she wants that doctor to listen to her and those are her decisions she needs help but it's her choices in her life and she deserves that respect also in the other corner is a young woman a Canadian woman named Rebecca Biani who again has very significant support needs does not communicate traditionally and Rebecca gave a presentation from the floor of the UN talking about how important it was to have family in her life so she could be included and that her will and preferences were respected for the reasons that it matters these are about our lives we recently did a global report called independent but not alone and it sort of captures I think the idea when we talk about decision making and supported decision making frankly for all of us none of us make really big decisions in our lives without talking to someone about it whether that's a trusted advisor whether that's a friend whether it's a family member and none of us there's no decision in the world that we want to make we are all constrained by our finances by our practicalities I would love to up and move to Fiji in the winter because my kids hate snow suits and that causes me an awful lot of struggle in the morning I can't do that, right so we all know that there's realistic constraints on how we make decisions and I think often in the conversations that we've had when we talk about this when we talk about your own decisions on your own two feet when really none of us are doing that all that often so what we heard in our global report is from self advocates people saying we want to be heard and we want to make decisions about how we live our lives pretty simple stuff right we heard from families that they need help in supporting their family member to do that what does it look like how do I balance out when I'm and what we heard from organizations is how do we respond to will and preference if we're running a group home or a small options home or helping people live on their own and how do we as organizations work as agents of change to create inclusive communities so the key findings that we had and wow that's small if you're across the room I apologize for that the key findings that we had is independence isn't alone people are safe when they have relationships often we talk about guardianship as it relates to safety that somehow this piece of legislation is going to keep people safe and at the end of the day we know that's not true what keeps people safe is keeping them connected to their communities having meaningful relationships where people are going to be looking out for you people are going to say hey Julianne comes to Tim Hortons every day and he didn't show up today and he's not going to be around here we know that families have a really critical role to play here they have a huge role around building those social connections and those relationships and we know that supported decision making starts early and it starts at home we cannot expect someone who's never in their entire life had to make any decision of any kind to magically turn into this decision making adult at the age of 18 we need to be building that self-advocacy understanding from a very young age we know family-based organizations have a leadership role as agents of change and that none of this happens in the absence of community inclusion if kids aren't going to school if we're not in your beavers cub if we're not in your you know soccer team we're not seen as valued members and when we're seen as others and when we're seen as someone that you can question in your capacity it's easier to say oh my god they clearly can't make that decision instead of understanding how people make decisions so it's also more than the removal of guardianship and substitute decision making and it is about an investment in empowerment so really quickly the UN convention what does it do it shifts us from an old model of an ability to understand and appreciate to a new equation where we say an ability by which we mean any way for someone to express their will and preference and we all know everyone has some way that they can express their will and preference plus support and accommodations is what equals legal capacity that's our new paradigm that's our new shift and another important piece as referred to in the general comment is that the CRPD shifts us away from best interest to best interpretation of will and preference which is a really important shift in there in decision making the first thing to say about supported decision making is that it is massively misunderstood and that many of us are still really struggling to find ways of making that more accessible and better understood and neat thing about supported decision making is that it is 100% made in Canada concept came out of an alternative to guardianship task force from the Canadian association for community living and when we were negotiating the UN convention we were able to introduce it to guardianship laws and got everyone on board and it is now secured in the CRPD that people have the right to use support to make decisions so what does that mean? really it means a whole bunch of different things supported decision making could be as simple as plain language providing people information and language that they can actually understand and process it is about could be things like support with planning like Kiara and my colleague Quincy who had been in the picture in the bottom they might need help with things like budgeting they might need help with things like coming up with a grocery plan and coming up with a menu plan sometimes people might need support with understanding consequences and implications of decision so they want to have someone that they can talk to and say okay so if I do it this way this is what is going to happen and simply having the opportunity to make the outcomes of decisions could be sufficient for someone to meet their decision making needs we also have as is the case with Rebecca and Charlie much more intensive supported decision making efforts and those are sometimes in Canada referred to as circles of support and that is where you have a group of people or a circle of support around someone whose job it is to articulate the individual's will and preferences they are the people who know that individual and they are the people who have that trusted relationship who are able to put words that we understand to the decision that their family member or their trusted friend is trying to make quickly I'm just going to touch on the concluding observation so at the UN level all countries who have ratified a convention have to report to the relevant treaty body related to that convention so a year ago reported to the CRPD the committee on the convention on the rights of persons with disabilities and one of the jobs of the committee is to hear from the government obviously but also to hear from community and then what the committee does is step away do a bit of an analysis and come up with what we call concluding observations and those are essentially where the committee gets to say here's what we kind of think is going on here so a couple I wanted to highlight specific to Canada and article 12 which is the article in the convention on legal capacity is that Canada needs to withdraw its declaration and reservation on the convention specifically on article 12.4 of the convention carried out a process to bring federal provincial and territorial legislation in line with the convention additionally they need to collaborate with provinces and territories to create legislation for recognizing that legal capacity and remove any exclusionary provisions in federal statutes so things like bank act income tax act those sorts of things what's important for me in highlighting these is I think one of the disappointments in the Nova Scotia legislation which we will get to in more detail is that for me it's also a really lost opportunity we had the chance to be one of the most progressive provinces in Canada and certainly to become a leading example around the world around what it means to meet the obligations in article 12 and the legislation falls significantly short of being able to do that and the legislation talks the talk in some regards and in some places the legislation does not walk the walk there is very little to back up the sort of loftier aspirations that have been captured in there and I think it's important that while the convention often is understood as something that Canada ratifies Canada as the ratifier I suppose any lawyer here is welcome to correct me on my terminology does have a responsibility to ensure that the convention is implemented throughout the Federation and that requires collaborating with provinces and territories and it requires looking at how not just our legal capacity legislation is working but how are we establishing a pan-Canadian approach on implementing the convention as a whole so I added in here some of the concluding observations more broadly around requiring that pan-Canadian approach setting up some mechanisms ensuring that legislation at provincial and territorial levels which is to be updated include specific measures to implement obligations of the State Party under the convention I think it's pretty clear so I'm going to stop there and hand it over to Sheila but again for us for me it is really about how do we ensure that at the heart of all of this the lives and stories and real people are what we're focused on we often tend to legislate to worst case scenario we tend to panic around worst case scenario and worst case scenario very rarely is the actual case that we're dealing with I think we really just want to make sure we are ensuring we are respecting the will and preference and the rights of people in all things that we do thank you well thanks so much so perhaps one message of tonight's panel is that deinstitutionalization isn't just about moving people from big buildings to little buildings we have to deinstitutionalize our minds and this means shifting old habits of mind that we see inscribed in laws like our old and to some extent our new adult guardianship act so the question I want to ask is whether the new law helps or hinders that process of deinstitutionalizing our minds or does it do a little of both so this is my plan first I want to take us back to what Anna has already so beautifully addressed which is why this matters and the laws and the practices that we've come to know as guardianship and in answering that I'm going to review some of what you've heard about the CRPD and supported decision making that second I'll turn to some examples of progress in the new law which Archie has already given you a view of or a preview of including what I'm going to say are opportunities in the new law for enriching and deepening our practices of supporting and respecting autonomy third I'm going to turn to some major law and then I'll end with some thoughts on opportunities for advocacy in light of this law so why this matters and again I thank Anna for what she brought forward on this question the laws and the law reform that we're discussing matter because people matter our families, our friends we ourselves matter and who we are in great part we're the leaders and our preferences we want to be recognized and respected as Anna was saying so we want our hopes and our desires to be recognized and respected so this is Russi Stanow in year 2000 Russi was placed under public guardianship in his home country of Bulgaria in proceedings that were initiated by his sister who wanted him out of the family home six days after a public guardian took his file Russi was loaded into an ambulance and driven 400 kilometers to a decrepit institution in the mountains I visited it this summer actually it's all shut down and even more decrepit than then a place for men with psychiatric disorders he lived there for ten years and uncrowded and sanitary often freezing conditions he survived in part because he had permission from that place into town to do odd jobs for people so he'd get himself up in the mornings and out he'd avoid the obligatory routine sedating drugs that everybody had to take and despite his formal inability to make contracts under Bulgarian law he'd trade his labor for a little coffee or some alcohol or some money or some cigarettes he entered into relationships into transactions in that community sorry I'm a super emotional person so you don't have to get alarmed when that happens it just happens to me all the time so he stayed alive where many others around him perished so one day in 2002 some human rights observers came to that institution and they met Russi and he saw his chance he wanted to fight he tried it domestically and when he failed in the courts there he and his legal team went to Strasburg to the European Court of Human Rights and this is him standing there in Strasburg Russi Stano's victory against his country is recorded in a famous 2012 judgment of that court called Stanovin Bulgaria it was the first time that that court recognized placement in a social care institution as they call a place like that by a guardian as a deprivation of liberty and it was the first time they recognized conditions in a social care home so called as cruel and inhuman treatment so Russi was my writing partner for a chapter in a book on guardianship and we started the essay with something he said in one of our conversations he said I had plenty of dreams but then I was put in an institution and I had only one dream to be free at his hearing in Strasburg I am a person not an object I need my freedom on this slide as well is a drawing that Russi made of figures that he would etch along the road sorry it always happens as he'd walk from the institution through the woods to the village so his making that journey day in and day out to join in community with others is to me a sign of the indomitability of the human spirit so Russi died last March in Bulgaria there you go again I'm not going to be on video having been turned away from hospital in circumstances that have given rise to a public inquiry when he died he was still under guardianship and he was still living in an institution now these were better conditions for but he was still separated from the community in a way that he found profoundly stigmatizing and constraining his attempt to get out from guardianship had unfolded in a way that was more Kafkaesque than Kafka ever wrote in our essay I asked if this happened to Russi Stanev internationally celebrated human rights hero because he kind of is he's a little famous in that crowd then what good are human rights in Bulgaria and it's far away but it's so close and the reason I open with it is because Russi was my friend but also because the treatment of persons with disabilities as objects to be handled placed treated fed tied down locked down pushed around sent to bed down home Nova Scotia and it's as deeply set in our institutions and our habits of mind as it was in Russi's home so the Sega of Russi Stanev's fight against Bulgaria is a little like the story of Landon Webb which Archie has so nicely relayed I told Russi about that case when I first met him and he shot me a big smile both these men were governments and their laws and they won in court on grounds that centered on liberty Landon got out from guardianship Russi didn't but in both cases what followed at the level of law reform was disappointing in Bulgaria efforts to enact far reaching legislation centered on supported decision making has stalled but what about Nova Scotia we now have not an incompetent persons act but the question is what does that mean for human rights and again I'm not going to be just dumping dumping on this I want to say there are opportunities and openings here that are really important as well the Sega sorry Archie and Anne have introduced the UN CRPD and it's relevance to their form of guardianship laws and more importantly it has relevance to securing the services and supports that make choice and equality so the CRPD was an expression not just not of academic ideas or top down bureaucrat power but ground up organizing of disabled persons organizations and their allies from around the world like inclusion international which Anne took part in there's a number of people from Nova Scotia who took part in this stuff Steve Estee and others the Canadian Association for Community Living many others connect that human rights of persons with disabilities to gather in a mutually supportive web let's say of civil and political as well as social cultural and economic rights so rights to vote or assemble mean very little on the ground without equal access to education or housing or an adequate income or standard of living rights to equality and liberty mean nothing so the CRPD brings human rights down to earth or attempts to to meet the lived realities of persons with disabilities but realization of this is another matter as Anna was saying well CRPD rights are not directly enforceable at home or domestically here in Canada the fact that we've ratified it should guide interpretation of existing laws so this is a list of guiding principles from the CRPD nicely summarized by Suzanne Licka who was Landon Webb's lawyer she gave a presentation on this act a few weeks ago again the point my listing them here it's just to note the CRPD's interconnected web of rights which lays the ground or attempts to lay the ground for all our diverse human family to have an equal share with everybody most so this is article 12 which Anna was talking about and it's at the center of the CRPD statements of relevance to guardianship laws it draws a straight line connecting the right to equality before the law you may not absorb all of this it'll be online later I'll give you the copy if you want to pour over the language straight line between equality before the law disabilities may require to exercise their legal capacity okay so that's the statement that we signed on to so this has been described as requiring a kind of paradigm shift a radical reorientation in our ways of thinking and acting it means rethinking old models of guardianship focused on substituting one person's judgment and will for another's and replacing those with recognition that all decision-making require supports as Anna was so nicely pointing out so I try and capture bits of that in this chart this paradigm shift also requires recognizing that equality means accommodation of disability and so provision of the supports that are required to exercise legal capacity so that's a lot that I'm sort of rolling in there but you've heard it a few times in a few different ways so this slide and again it's so packed but again you can look through it later if you like again it's shared with me by Suzanne it provides guidance on some of the forms that supported decision-making may take and again I'm building on what Anna's already laid down the point at the top there is that legal capacity and so decision-making authority is retained by the person that's kind of the first principle of supported decision-making so assistance in breaking down a problem, a decision analyzing it communicating information and conveying to third parties I really like the last bullet there conveying to third parties the individuality and personhood of persons who may otherwise be dismissed on the basis of disability there will may just be disregarded the supporter has that rule too supports also I'm going to say I don't include a range of meaningful options for choice that's starting to build out a little bit into the social and economic plus an environment that's conducive to choice so this might require for instance crisis anticipation and intervention for some people you can't make a decision when you're absolutely in a tizzy it might require adjusting the sensory environment in the case of some persons on the autism spectrum it also requires as Anna brought out building trust this is of deep importance to all of us in developing autonomy and making decisions reflective of our values and building trust and self-trust especially when it's been systemically eroded demands very careful intentional work I go further to argue supports for legal capacity has to include attention to a range of social determinants so beyond just targeting assistance when particular decisions are being made so I've cited some elements of the CRPD that are on point and that would be a whole other lecture to go through each of them but I think that's really important to keep that bigger picture or bigger web in mind things like housing things like food things like you can't make good decisions when you're starving okay so with that I just want to ask in light of the aspirations you know go through what opportunities or openings does the Adult Capacity Act present for realizing what I've described as a paradigm shift and what kinds of challenges or concerns does it raise so Archie described the framework of principles that are to guide the act's interpretation and application they state that a person should not be deemed incapable because their decisions like he said are deemed risky or unwise orders and decisions are to be least restrictive on liberty they must promote the person's well-being which as Archie noted is defined to include personal autonomy and social inclusion and participation you know as well as promoting their financial interest so there's a lot rolled into those principles as you've also seen the Act defines capacity legal capacity as the ability with or without support those are sort of the important words but it's like finding Easter eggs or something like there's little dropings of mention of support here and there and you try and pull it together into something like a whole so defines capacity as the ability with or without support to understand and appreciate the information relevant to the decision and the foreseeable consequences so this is the standard legal test in Nova Scotia understand and appreciate with the important twist of capacity with supports with that mean another kind of tantalizing gesture to the idea of supporting legal capacity is this statement that capacity assessors must indicate what forms of support or assistance if any would enable decision making without appointment of a representative so the problem as I'll know further in a moment is that there's no express duty on anyone in particular to approve those supports so further a last thing on definitions the word support is defined in the act to mean supports reasonably and practically available to assist in decision making and some examples are given in the act itself so peer support communication and interpretive assistance individual planning coordination and referral for services and admin assistance is what we've been talking about is defined but again the question is who bears the duty to provide these supports arguably assessors bear the duty at the point of assessment but what resources will assessors have for anticipating or supplying them in addition courts may ask applicant representatives whether they've exhausted supports but this implies a robust understanding of when and how supports may serve people in specific contexts and we have little guidance on that in Nova Scotia so those are some indications of tentative progress toward a kind of ethos of support being inscribed in our new law this slide and it's packed with stuff but it describes a few further ways in which I think some progress is evident in this law so I've said there's now a duty how decision making supports might avert a finding of incapacity in addition the law includes some new procedural protections capacity assessors must tell the person the purpose of the assessment and its potential consequences that didn't used to be the case and also their right to have a trusted person present they must be informed of that their right to use a communication device there are also clear ways for adults to make a decision or challenge in order or decision in court and last representatives and I want to take just a little a moment with this representatives have duties that are arguably influenced by a support based model so once you're appointed as a representative these duties are however still nested in the bigger model of incapacity so they include as Archie said keeping adults informed about and involved in decisions respecting their wishes and promoting their independence so just to look for a moment a little more closely at those duties as potential sites of innovation you know as sort of duties around which we might start asking how can communities and families start building new practices best practices in this regard so first as Archie noted yet places a duty on the representative to encourage the adult to become to the extent possible capable of self care and decision making so what's the how what are the best kinds of practices what are some tips or guidelines we might start to build around that second the rat must encourage and facilitate the adults participation in decisions including advising them of the options this is not about just making decisions for people and not telling them about the options the rat must follow certain rules as Archie said on how to arrive at a decision so the rep has to decide as he said according to the person's prior capable instructions if there are any on point and there's a bit more law on how you sort of discern whether they're on point if there aren't and this is the point I want to focus on the rep has to adhere to the adults current wishes give current wishes similar weight there's only one other law I'm aware of that does this in Canada BC's representation agreement app so more fully stated as Archie said the rule is decide in accordance with the current wish unless the representative can establish this would be unreasonable so we have to sort of pause there for a second it's arguably a kind of weasel word right what's reasonable to you may not be reasonable to me but a representative would have to be able if they were challenged in court to establish that the adults current wish is so out of line with their financial interests or their well-being and again well-being is defined in the act to include not just health but autonomy inclusion participation that it can't stand right it's a word reasonable you might argue adults have a right to risk they should have a chance to learn from their mistakes within this reasonableness limit that the act states so I'm not saying hey this is a great law but I am saying you can actually work within this in some potentially innovative ways I'm going to have to close it down this is just a little bit more about the representatives duty a last point I wanted to make it's not this one art she already talked about this that the representative is to consider whether express wishes again on the rule that they must decide in accordance with current wishes must consider whether express wishes are informed and voluntary so this obliges the representative to ask not only does the person have enough information to inform the representative but are they perhaps bending to someone's pressure to take that into account to take power relationships into account so those are some aspects of the representatives duties that I wanted to mention and as I just wrap up some of the key concerns we might think about as we talk about the act are these I've said that there are these Easter eggs sort of you know structures are partial so concerns about the act include one you know it's continuing emphasis on removing capacity despite these asides about supports two the fact that the act doesn't vest anyone and in particular the state with a duty to provide those supports required to exercise legal capacity and third an extension of that I'd say the act should but it doesn't set up a center or a clearing of research and dissemination of best practices on supporting legal capacity and last there's no proactive monitoring or rights advice that where there would be for instance if one were in psych hospital you might bulk at the comparison but your basic liberties are potentially suspended in a comparable way okay so I had a couple other concerns I'm going to just flip through just about advocacy in light of this act that we have so my first suggestion involves giving content to the duties placed on representatives again to promote independence to inform adults and facilitate their participation and decision making and to respect their preferences I don't think this is just a new way of stating what everybody already does I'm just going to throw that out to everybody to culturally not just in terms of all these the words that the law lawyers wrote but to culturally start to reframe decision making of and with persons with significant impairments so to reframe it as not based in others assessments of their best interest treating them as objects but in their own attention to and respect for their own informed voluntary as this act puts it wishes otherwise I'd say we have an opportunity for advocacy around law reform so it's going to say a little bit more about you know paying more attention to best practices and supported decision making my very last slide goes to law reform and this includes participation in as Anna was saying federal provincial territorial processes under the CRPD for revisiting legislation together but also our own act this the words of the new act states that within three years after it comes into force there will be a review of its effectiveness including consideration of supported decision making so that's an invitation for more advocacy and more concerted strategic thought around this thanks for that thanks everybody so we wanted to open the floor provide an opportunity to engage a little bit more conversation with some of the parents was telling me that her son who was no longer able to live at home was living in a group home and the group home was sedating him and giving him medication without her knowledge without anyone any advocates knowing about that and so she applied for guardianship orders so that she could insist that she had information about his sedation and how he was educated and had some input into that and I wonder how that would now work and what next step should be in that situation given that she couldn't take him out of the home given her second son she couldn't live with her and she didn't have a more sensitive kind of workshop. Who would you like to start again? I have questions about that I've been dealing with this in a couple of situations and I feel ignorant about it so I'm going to see if my colleagues here have answers or others do. Are the mics on? I would have thought that Orton would be a substitute decision maker so she'd always have to be kept informed and she'd be part of that but I'm treating it like I treat hospital where that's just the case right? Is there something this is my fault? Hold on so I'm missing this I missed that part Oh I missed that So they have hold on so the group home's understanding is that he's consenting to this or I don't understand The parent didn't understand though that it was happening Alice is that it? She thought that they were over-medicating women in order to stop them having to look at what was causing the behavior of the situation and without knowing when he was being sedated and what medication he was going to give and she wasn't able to support him to make you know and the only way to get how and to say that we want to have that guardianship but I just wonder what she would do now I'm thinking if there were such a thing as a supported decision making act she might have entered into an agreement with him such that she was his supporter without having done that work you have to do even under this act she would be applying to be the representative which is akin to the guardian who then would have those decision making powers if the judge determined that her son was incapable of making those decisions right? The home can't just medicate people to restrain them they are only allowed to provide medication with the consent of the individual or a substitute decision maker or a representative under this new legislation they have no legal right whatsoever just to medicate to subdue and to control except in the instance of imminent harm to not for other reasons so one is deeply concerned in all total institutions about the risks of chemical restraint both in terms of the hazards that they may cause the damage to the person's autonomy and integrity and the violation of their rights and so one should be deeply concerned about any facility whether it be a psychiatric facility whether it be a home for special care or some other small options if medications are being misused as a matter of convenience or because of resource constraints so I think it's a fundamental legal principle that you just have to insist upon home being aware of and not abusing medication for simple purposes of control because we see it happening. The only piece that I would add to what Archie just said is often guardianship becomes the lesser of two evils for many families who are struggling with issues exactly like you've mentioned there are similar challenges families have in a lot of countries I have to confess I'm not sure the status here in Nova Scotia where laws prohibit people from inheriting money from owning property and so a family or a financial future goes after guardianship simply to preserve some financial security for them so there are some really significant drivers to guardianship that need to be addressed and it's sort of some of the points that Sheila was raising earlier about how it is we get to this point is just as important as the point that we're at like really looking at what's going on in a person's life but to Archie's point court challenge or challenge of some kind to be made they have no right to be doing that without the proper legal authority and we would assume that the legal authorities would also realize they have no right to be doing that in the absence of imminent harm blah blah blah if you fear that it's happening that is something that you can take support well there is also a statute in Nova Scotia called the protection of persons in care act which enables anyone and obliges healthcare to complain to the minister if you believe that residents of facilities are being abused or neglected so that it is possible to make a complaint under that legislation in situations where you believe the institutional norm has become one of abuse or neglect great question there are some other jurisdictions in Canada that do have laws dealing specifically with support and decision making those who identify as being more aggressive or something that we should should try to adopt here do you want to start with that it's sure Archie no go ahead so yeah I mean there are examples across country BC is probably one of the more famous ones with their representation agreements their rep agreement certainly when we were negotiating with the Newfoundland rep agreements are like 30 years old now so I think there are some things we can look to and there's little pieces Ontario's legislation also has fallen quite short there's little pieces throughout that are building but there's nothing that stacked it in the most effective standardized kind of way currently there's reform that's going on in Newfoundland that we hope is going to be guided to really pull all of this together and we had that chance to really knock it out of the park and do something innovative progressive and despite pulling in and you can see the BC rep language throughout a lot of our the new legislation but it just didn't sort of pull enough promising practice I think to really make it go forward however none of that exists in one neat package anywhere and I'd like to draw attention to Sheila's slides that our legislation unfortunately and I don't think the other provinces either make it clear that the state has the duty to provide supports for people who cannot do it themselves and also to ensure there's a coordination via a resource center otherwise to ensure that people are supported so it's not just obviously wealthy individuals but that indigent persons have the assurance that the state will enable them to exercise their legal capacity which is what's required by the Convention on the Rights of Persons with Disabilities that's the deepest disappointment about the Nova Scotia variant of representation legislation now that for reasons that elude me the government was unwilling to take responsibility to protect the international human rights and the constitutional rights of people with disabilities by ensuring that they had it simply because I thought it's not only a matter of protecting fundamental human rights I would have thought that the government would think that this is excellent politics as well to be seen as supporting persons who are otherwise marginalized and disempowered and unfortunately I was in the house when and Ruth was as well on the evening when the premier arose to stop consideration of this bill before it went to third reading we thought at the time they're going to come around to introduce the kinds of supports that we have been hoping for and arguing for tonight but it wasn't that at all I've got a couple of responses to that as well and one partly to Alice's question and building off what Archie just said one of the problems I think that one encounters the sort of the zone of institutionalization or guardianship is the paucity of options of meaningful options and so even in that case in the group home we can tell you we can get on our high white charger and say that's against the law and you should take them to court well if they're saying we're going to kick Johnny out of the group home which is what I hear from people who are having trouble like that and then the responses well if you don't like it lump it we've got somebody in line who's really happy to take that bet that is hard and that's where it comes back sort of to systemic to coming together because if there was a mass complaint these are systemic problems over medication for instance and then on to the other models of supported decision making one that comes to mind and the next where there aren't family around for a person is this PO skein the personal ombuds from this little zone in Sweden where they set up a system where you have somebody like maybe it's something like I think of them as a high power OT and they're assigned to you and they're your system navigator and friend and some people look at that and think that must cost so much money I mean how can you control you it's not like a sort of treatment community treatment it's someone there to facilitate and talking to the fellow who set that up he says no we have done studies on that we've done the economic sort of you know analysis of the savings that you make in the jail system and other systems so I think that's an awesome model and I'd love for Nova Scotia to pilot it because they're so small to launch innovative pilots BC's representation act the only thing that I'd say about that well two one is that there is a model in that act which I think a lot of folks were interested in putting into our act which was supported decision making agreements so these are mechanisms where you come together with the person who you know wants support a relationship through an agreement but you don't have to put that person through an ordinary capacity assessment of understanding and appreciation the matters that are going to be under decision under BC's act it's a different kind of threshold for entering into a supported decision making agreement that includes having a relationship of trust so it's kind of innovative in that way it worries a lot of people for that reason to be honest there's fights about it as I understand it are very behind it so last time and I would just add there are a lot of international examples you know we're seeing progressive legislation coming out in Costa Rica we're seeing really good examples coming forward in Colombia Ireland there are some challenges but there is progressive legislation that directly includes that some sort of service clearing house kind of mechanism so there are I mean there are a lot of people who are trying to understand that there is a lot of understanding between that everyone is moving this forward in very progressive ways but at the same time somewhat incrementally questions yes Jeff you mentioned that it has to be a medical person or it should be a medical person making the assessment on whether professionals and that they would have to take some sort of training I know this is new so has anybody done that yet or has anybody the legislation currently empowers only medical practitioners and registered psychologists that's under the regulations section four other health professionals will be able to do assessments but only once they complete the training program but that will include registered nurses or nurse practitioners social workers occupational therapists licensed practicing member of any other health profession that has designated by the minister so that could include additional health professionals or social service professionals so it's only doctors and psychologists who are currently able to do this without engaging in training and it was a piece that we really put in place for example and doctors have very heavy case loads so we really pushed and that was one piece I think Anna was there that day and because also how are we ensuring that doctors have a current understanding of this paradigm shift how are we supporting new professionals and other communities anyone who's a parent who is involved in like the DTC I basically sit down with my doctor come up with whatever jargon and we make sure that systems are done very differently with such significant consequence on the line I disagreed with the government and spoke about it at the time in these consultations I thought that no health profession should be able to be trusted with responsibility of doing assessments under this new legislation without training I just thought that's part of advancing one's professional but everyone should be required to take the training program well I don't know I'm not involved with government I know it's happening it's being devised but I don't know how far it's going on I think I had a comment to follow up on that just because this is my son and we're kind of involved in all of this right now and one of the comments I just spoke with one of the physicians who had done a machine for it since October to find out who was able to do it because she wants the training as well so she was able to do the assessment under the old variants however not even now because she doesn't feel like she's trained and even I'm a registered nurse I'm reading through it I don't even understand a lot of it and I do physical assessments and different things like that but just using the wording I'm reading this assessment or doing it beforehand this is what the data is about development sort of clinic development for adults they don't even know when it's coming and they've been pushing since October because they wanted to get the training down at any place before it changed and it changed and they're still waiting so that was one of the questions she actually asked us was if anybody knew when this training was coming or I made a phone call actually it's in process they're still hiring staff to get some things rolling but it's not online yet any other questions it's just about phone calls oh I'm sorry it's raining there are any safeguards in front of those who would in case each person take advantage of that well I mean the big safeguard under this legislation who has the responsibility of ensuring that the representation plans and the monitoring thereof are in accord with the legislation but that's where cases come before courts obviously there are many vulnerable people and people who will not be affected by this legislation who can be the subject of predators we have to see it all the time yes and there are existing like if you're talking as well about you know one of the issues is contracts and so getting a cell phone and then the cell phone bill is like eight bazillion dollars and mom or dad has to pay the cell phone bill I see a lot of heads nodding on that one so there are consumer protection legislation that you can go against Val you can go against Rogers and I think sometimes we miss the opportunities within existing consumer protections or existing vulnerable persons legislation pieces that we can use equally as effectively as little pieces that lead us to the big ones so how are we making those initial complaints mechanisms more accessible more disability aware those sorts of things yes I think we're winding down so thanks everybody for coming out I think just finally I'd say that encourage everybody to continue the conversation get engaged go to the public trustees website there's information there there's education and dialogue going and it's really a joint effort between people with intellectual disabilities the community, government, all of us I think the onus is on all of us to work together to continue to work forward we have three years then there's a year of review after that I don't know if you remember that part but anyway we have time to keep educating ourselves so that when we get to that point we can challenge and offer other options thanks everybody for coming out