Rebuilding HOPE Conference Tidbits

I attended the Rebuilding HOPE Conference on March 29, 2025. This was the second conference the 
Province has held as part of the infamous Human Rights Remedy*. 

My plan was (and still is) to post about the content of the Conference but I think we all know my history with planning and posting. 

So as a treat (and to string you along a little ;) I offer this:

... the Honourable Scott Armstrong, Minister of Opportunities and Social Development, spoke at the conference and announced a new $9.3 million investment to support people in three programs: Flex Individualized Funding, Direct Family Support for Children, and Alternative Family Support. These programs are community-based and provide individualized, self-directed, portable funding in line with the remedy. This is an interim step as the Province transitions to permanent, individualized funding for all people with disabilities. The formal announcement is available here. The Minister also had an interview with CTV following the conference - you can watch it here. We have also attached the three presentations made during the conference for your reference.

And with that I bid you adieu until we meet again.

        *With many thanks to the Disability Rights Coalition of Nova Scotia  for getting us this for. It was a long and tortious process but they hung in and that makes them heroes in my book.

       **You can read more about the Province's timeline to implement the Remedy here.

      *** Picture courtesy of Tierra Mallorca 

Experts’ Report: Human Rights Review and Remedy Summary

I've been hearing a lot about the "Human Rights Remedy" from our DCS social worker lately. 

The full title for the process has quite a handle; namely, the "HUMAN RIGHTS REVIEW AND REMEDY FOR THE FINDINGS OF SYSTEMIC DISCRIMINATION AGAINST NOVA SCOTIANS WITH DISABILITIES".

In a previous post giving a broad overview of the changes the Department of Community Services is now legally required to implement within the next five years, I mentioned in passing the expert's report which the government is now legally obligated to follow. 

Compared to the length and complexity of the full report, the summary found here is well-worth the read. It summarizes the six key decisions arising out of the process; namely,

    individual planning and support coordination

    closing institutions

    community-based supports and services

    a program that works in all areas of the province and many professionals work together to                   support local choices

    individualized funding; and

    disability system capacity.

Check it out.

The Continuing Saga of Human Rights in Nova Scotia

In my last post, we discussed the (hopefully) upcoming changes to the Disability Support Program following the ruling of the NS Court of Appeal in the human rights case involving three residents of the NS Hospital.

I gave some of the backstory and talked about the interim agreement reached between the Disability Rights Coalition and the Province.

Believe me, after all these years, I'm as cynical as anyone else when it comes to wholesale changes in how (and if) Nova Scotia delivers services to individuals with disabilities. 

But the one change (and if this doesn't make a difference, I can't see how anything else ever will) in this case is a decision with the force of law behind it.

The NS Court of Appeal agreed with us and the Supreme Court of Canada denied the Province's leave to appeal so .... there's really nowhere else for them to go.

Our family attended one of the in-person sessions held across the Province and it was ... interesting. Kentville was suppose to be the third meeting but ended up being the first and the Province readily admitted that it wasn't prepared for the turnout. 

A few interesting take-aways from the meeting. 

• The Province has 5 years to implement all the changes set out in the Agreement.
• They will need to hire 100 more social workers to make this work.
• The plan is to hire 25 social workers every year.*
• The waiting list that always 'wasn't** will no longer exist.
• Instead your worker will come to you to ask where and how you want to live.

A very astute person in the audience asked what would happen if suitable housing wasn't available (which seems to be the case for a lot of people in the Province, with disabilities or not). The response was something to the effect that if you couldn't find what you were looking for, you would need to wait until you could. I assume that meant you would need to 'settle for something else'  (of your choice) in the interim but you know what they say about the danger of assuming. Although I suppose we can't legitimately ask the Province at this point to figure that (or a lot of other things) out right away.

The sessions are over now so I hope at least some of you attended.

BUT the reason I started this post was ... [drum roll please] ... I actually read the plain language executive summary of the independent expert report today. I found it a little hard to navigate at first - how the heck do I find p. 2 - but it turns out the squiggly little up and down arrows at the bottom of the page did the trick. It's very short and I make no comment on its sweetness but I would suggest we all at least start there.

The full report (which I admit I have not yet read) can be found here.

Very well. Carry on.

*Meaning that it will take 4 years just to get the staff they need.

** I assume most of us have found that depending on who you speak with (and when), there may or may not be a waiting list for services.

In Residential Care Situations, What Are Essential Visitors?

These days when I come across an interesting issue or article in the media, I generally just post on FaceBook, reasoning that at least that way it will receive some attention. You may not know this but legal blogging is  a very labour and time-intensive craft (at least it is if you want to do it right) and many days I find it hard to keep up with both my practice and my life.

Although something may indeed better than nothing, the downside is that it limits how much commentary I can provide on any given issue, so it really isn't the same, is it? 

So just as I would about to add this link on the MMC Legal Services FB page , I stopped, took a deep breath and made the decision bring it here instead. Consider it a small effort at atonement.

I know for a fact that the restrictions on visitation at Dept of Community Services home in Nova Scotia has affected many individuals and their families. Although I don't know for sure exactly how negatively people have been affected here, I do know that Nova Scotia could sorely use something along the lines of this proposed Private Member's Bill in Ontario.

Many, including Taylor, hope that a private-member’s bill introduced in September 2020 could lead to change. The More Than a Visitor Act, proposed by Lisa Gretzky, NDP critic for the Ministry of Community, Children and Social Services, aims to ensure that caregivers of a group-home resident would not be treated “merely as a visitor,” especially in emergency situations. The bill defines a caregiver as an individual who “continuously or occasionally provides significant, unpaid, non-professional support to a person receiving care, support or services,” shares an “emotional bond” with the person who receives care, and is considered by the person receiving care, or their substitute decision-maker, to be a designated caregiver. “A designated caregiver,” the bill reads, “may be a family member, a neighbour, a friend, a support person, an attorney for personal care or property under the Substitute Decisions Act, 1992 or another similar type of person.”

There's already been one successful human rights decision on this issue in Ontario, in which the Commission found that a child's disability-specific needs were violated when a rigid visitor restriction policy initially allowed for only video calls or drive-by visits and when in-person visits were allowed, they were required to remain six feet apart from residents. Unfortunately, due to a  communications disability, the child could not use words to communicate, instead relying on  touch, hugging, pulling on hands, gestures and other physical displays of expression.

This decision raises (and answers) many complex and timely issues.

Significantly, the Tribunal found that “[h]uman rights protections do not go away in a pandemic”, despite the service provider's argument that the unprecedented nature of the pandemic did not allow space for individual human rights protections or individualized assessment. Although the pandemic raised important and difficult issues, service providers were still required to follow the requirements of the Code. The human rights framework is robust enough to address many contexts – including a pandemic where safety and health considerations require particular attention. 

The next point of interest is Commission's response to the argument that the parents were at fault for failing to try out the alternative methods of communication proposed offered and instead “insisted upon their preferred accommodation.” The Tribunal rejected this, finding that once the parents had made an accommodation request and explained why the alternatives offered were insufficient, it was incumbent upon the Respondent to actually consider their request, as opposed to insisting that their way was the only way. 

Although the duty to accommodate requires the cooperation of both parties cooperative process, the ultimate responsibility for finding and implementing the accommodation solution remains with the respondent.          

The third important finding relates to the effect of government guidance around safety protocols on human rights obligations. The provider asserted that it was required to strictly follow the government guidelines and couldn't deviate from these to accommodate any individual. However, the Tribunal found that such directions were advice and recommendations intended to guide service providers in their decision making. 

This mandated that the service provider implement the government’s guidelines and recommendations with its mind turned to the individual human rights of its residents. The accommodation request must be investigated and an assessment of the actual risk of accommodating the individual must be undertaken. As they had failed to do this, it was unable to demonstrate that accommodating these individual needs would amount to undue hardship.

The ball was in the respondent’s court to consider the applicant’s accommodation request, and seek its own public health advice on that specific request. It did not do so. Instead, it remained steadfast in its approach. Because the respondent did not investigate the applicant’s accommodation request, there is no objective health evidence that it would have caused undue hardship to grant the request in terms of jeopardizing the health and safety of the residents and staff in the applicant’s home. (para 132) 

Although the Tribunal’s decision relied heavily on the individual facts of the case (the child came with particular pressing needs to have meaningful contact with his parents; the group home had only two residents, which was a relatively controlled environment; and the public health authority was supportive of an individualized risk-based assessment informed by the rates of transmission in the region at that time). all of the above were important factors in the Tribunal’s determination. 

I would submit that there is a strong argument to be made that such such accommodations must be guaranteed to  adults as well. There are a myriad of factors to be considered when individuals have developmental disabilities or delays. For example, outdoor visits with strict rules around touching can be very confusing and upsetting for these individuals, no matter their age. 

The definition of "essential visitors" in residential care situations must include parents or other significant individuals and accommodations must be made [to the point of undue hardship] to meet everyone’s needs. The law requires it.

Hoping for Good News [Round Two]

I'm hoping (and praying) for some good news today.

Some night recall the Federal government's "thwarted" attempt in June to provide a one-time non-reportable payment to individuals with disabilites to "navigate the effects of the [COVID] outbreak" and "assist with additional expenses incurred during the pandemic". "

Thwarted" by party politics, it was.

Today, they return to the House of Commons for Round Two:

Today, the Honourable Carla Qualtrough, Minister of Employment, Workforce Development and Disability Inclusion, announced that the Government of Canada intends to propose legislation that would make the benefit available to more people and expand the one-time payment to include approximately 1.7 million Canadians with disabilities

You will qualify if you receive any of the following benefits/services:

•  a Disability Tax Credit certificate provided by the Canada Revenue Agency;
• Canada Pension Plan disability benefit or Quebec Pension Plan disability benefit; or
• disability supports provided by Veterans Affairs Canada.

This too is good news in that eligibility criteria have been expanded. I'm fairly confident that the original proposal would have only provided the payment to those in receipt of the Disability Tax Credit.

Here's hoping and praying that the Department of Community Services doesn't claw this one back too (as they did with the CERB).

ROUND TWO [bell rings]

All Hail the New Leader: Disability Support Program

I stumbled across this by accident on the Disability Support Program website. Very, very interesting. Of course, whether it will actually mean anything for the disability community's point of view remains to be seen.

I can tell you, however, that I recently met with Maria Medioli, who has taken over Joe Rudderham's position as Executive Director of the Disability Support Program. And I must say that I was positively impressed - which is not an easy feat with this long-term cynical parent/ disability lawyer.

You might remember that it was Ms. Mediolia that recently commented to the effect that parents and caregivers should contact staff at the DCS, who will "will bend over backwards to support families as best they can."

I must admit that when I first read that, I rolled my eyes, shook my head and wondered why the more things change, the more they stay the same. And that, as they say, was that.

Or at least it was until I actually spoke with Ms. Medioli in person (as part of a small group of families). The conversation lasted close to two hours and she seemed very open and honest in her answers/comments. To say it was a pleasant surprise would be a very large understatement.

So, let's put it this way, Mr. Rudderham and I never really hit it off from the first day we met but I got a very different, very positive feeling from Ms. Medioli.*

Never fear, though; I remain somewhat cynical. After all, does anyone remember the story of the former Student Services Coordinator for the Annapolis Valley Regional School Board who sounded like God's gift to parents whenever she spoke in public but was pretty much the polar opposite when a family actually had to advocate on behalf of their child?

Whether some people start from the right place but quickly get sucked up and corrupted by the system or  are simply very good at "playing the game" (generally to the detriment of individuals with special needs and their family members), I take very little at face value.

But I will give Ms. Medioli a chance to show that she not only talks the talk, but actually walks the walk. Maybe you should, too.

* Ironically, some might say, at the end of our meeting, Ms. Medioli commented that it had went much better than she feared though it would. Skeptic meet Skeptic.

Canada's Record on the UN Convention on the Rights of Persons with Disabilities

Last month, Canada hosted the United Nations Special Rapporteur [an independent expert who reports to the United Nations Human Rights Council and the General Assembly, and advises on progress, opportunities and challenges encountered in the implementation of the rights of persons with disabilities worldwide] on the rights of persons with disabilities. And she had lots of interest to say.

I'm going to highlight a few areas in this post, those of particular interest to me. However I strongly encourage you to read the entire document. Yes, it's lengthy but definitely worth the time.

GENERAL CONSIDERATIONS
Nevertheless during my visit I have noticed that discussions about the rights of persons with disabilities are still framed in terms of social assistance, rather than from a human rights-based approach. ... Therefore, more proactive governmental responses are needed to ensure systemic change and take away from individuals the burden of initiating lengthy and onerous legal procedures to achieve the recognition and enjoyment of their rights.

EDUCATION
I also noted a disconnection between the State’s commitment to inclusion in legislation and policies, and everyday implementation in practice, reflected in long waiting time and lack of services for students with disabilities and their families, putting them under significant emotional and financial pressure. ...

ACCESS TO JUSTICE
I would like to remind the federal, provincial and territorial governments that the obligation to provide procedural accommodation to persons with disabilities in all legal proceeding, as established in article 13 of the CRPD, is distinct from the obligation to provide reasonable accommodation, as the first is not subjected to the test of undue hardship.

In addition, I am very concerned about the overrepresentation of persons with disabilities, particularly those belonging to indigenous or other minority communities, in both prisons and the juvenile justice system. I have also received alarming information that persons with psychosocial disabilities are diverted to mental health courts for minor offences where they are subjected to higher penalties and stricter regimes.

LIVING INDEPENDENTLY in the COMMUNITY
I am extremely concerned about the lack of comprehensive responses to guarantee the access of persons with disabilities to the support they need to live independently in their communities. Whereas legislation, services and programmes vary across provinces and territories, generally access to support is not considered as a right, but rather as a social assistance programme dependent on the availability of services.

... persons with disabilities have limited access to different forms of support (including income support, home support, and respite centers), experiencing long waiting time up to several years. While some pilot projects have shown their potential to transform service provision (e.g., the initiatives to provide personalized direct funding), the overall identification, systematization and scaling-up of such initiatives remain a challenge.

RIGHT to LIFE
I am extremely concerned about the implementation of the legislation on medical assistance in dying from a disability perspective.... I have further received worrisome claims about persons with disabilities in institutions being pressured to seek medical assistance in dying, and practitioners not formally reporting cases involving persons with disabilities. I urge the federal government to investigate these complaints and put into place adequate safeguards to ensure that persons with disabilities do not request assistive dying simply because of the absence of community-based alternatives and palliative care.

Now go read the rest. Trust me.

NS Family Fights for Future of Son with Disabilities

This video is making its way around FB with good reason.

It is heartbreaking and a true rendition of what is happening in Nova Scotia right now, particularly to those with more severe challenges, such as Brendon.

My Favourite Time of the Year ... Election Time!

Long time, no speak. My apologies for that.

But look at what I found today ...

Shaping the future of NOVA SCOTIA’S DISABILITY SUPPORT PROGRAM Choice and Inclusion: Implementation Plan

Reading through it, it occurred to me that they design these things so that anyone outside the disability community who happens to stumble across it will flip through it and think, "Good job, guys. Look at us go".

Unfortunately, if you happen to be someone who has actually walked (or wheeled) their way through this world, you might want to take a Valium (or some other nervous system calming agent) before trying to read it.

If I may ... a few examples, perhaps?

Oh look, they are going to take a new approach in providing services. How special.

A New Approach
Nova Scotians with disabilities have the same rights as everyone. We all deserve to live our lives as independently as possible. Each of us has a right to be full participants in society.

That means full social and economic inclusion, and the opportunity to live with dignity and choice. A person-directed, accessible and flexible support system for persons with disabilities will focus on key areas of action: • Increasing community-based living with social and economic inclusion; • Modernizing services and programs based on choice, flexibility and person-directed planning; and, • Reducing reliance on long term larger facilities. 

Too bad that promise was first made four year ago, when this government came to power. You might remember that - it was when the Liberals first adopted the NDP plan in the middle of our last election campaign.

Update the legislation? You mean the Homes for Special Care Act, first passed in the 1970s? That would be awesome, wouldn't it?

Updated Legislation
New legislation to replace the Homes for Special Care Act will ensure a person-directed approach to service delivery and emphasize helping people live in their own homes and communities. The legislation will help establish a range of services, supports and funding, while protecting the rights of individuals with disabilities so they can access government services and programs. 

Too bad that promise was made four year ago, too. And still not a hint of the legislation, let alone the regulations that would have to follow (often where the "meat" of the law lives).*

Should I go on? Just a few more thoughts, I promise.

What exactly are we to "reimagine" these "facilities" as?

Reimagine Residential Facilities
Under a new delivery system, facilities will no longer be used as long term residences. Instead, they may be adapted and reinvented in keeping with the principles of the transformation. The province will no longer fund the expansion of the old model of support which includes Regional Rehabilitation Centres (RRC) and Adult Residential Centres (ARC). This will not happen overnight. As we move away from the old model, there will be a focus on community-based residential living options. 

And when, exactly, will referrals actually stop? Just how long can a "temporary" placement in one of these institutions last?

Sorry, I didn't quite catch that ... how many years was that?

All right, all right. I hear you.

I will leave it to you to peruse the rest at your leisure.

But before you go, anyone interested in a little history on the Roadmap?

Rate Your Government

Yet another survey, this one from CHAG (Community Homes Action Group), formed a few years ago to gather information and provide help for good housing options for people with developmental disabilities.

In June 2013, the Government of Nova Scotia accepted the work of a joint Community-Government Advisory Committee on Transforming the Services to Persons with Disabilities Program (called the Roadmap). Before that, people with developmental disabilities may find it hard to do many things that most people can do easily. These disabilities can make it hard to learn, speak, tell others what you want, work with others and take care of daily needs. Developmental disabilities are present at birth or develop before 18 years of age. People can have more than one disability. 

CHAG wants to know the opinions of people on the status of services for people with development disabilities three years into the Roadmap. Please help us by filling out a short survey.

We are sending the survey to many people to learn Nova Scotians’ thoughts about the Roadmap. CHAG will create a “report card” that we will share with others. We have two goals: 

1. To make people aware of the critical issues facing people with developmental disabilities and their families; and
2. To encourage government to take action on these issues. 

Do you think the Roadmap has helped or not helped people living with developmental disabilities, their loved ones and service providers? Please tell us what you think. 

You do not have to give your name or tell us about yourself. No one will know that you filled-in this survey. Nothing about who you are will be kept with your answers. Please answer as many of the seven survey questions as you can. You can stop at any time. Clicking the link says that you know your answers will be kept private and that you agree to try the survey.

Please complete this survey by December 1, 2016. Make your opinion count!

As a community, I firmly believe that we really need to hold the government's feet to the fire on the issue of the Roadmap.

After all, if not us, then who? Please take the survey.

The Disability Support Puzzle Changes Again

Some of you might recall me posting a little over two years ago when the Dept of Community Services first posted the Disability Supports Services for Persons with Disabilities (SPD) Program Policy online. The document covered both financial eligibility for the programs under the SPD umbrella and the Basic and Special Needs Policy. So good stuff, that.

Or, at least I thought so, until I noticed the other day that we now also have a Level of Support Policy, dated May, 2014, which appears to supplement the 2012 Policy. Which, yes, means I am a little out of date, but, really, if you knew about it, why didn't someone tell me? Personally, I find that it can be awful hard to keep with life these days.

But back to the point and that is this - this Levels of Support Policy appears to be significantly different than the 2012 Policy.

While the Disability Supports Program Policy (2012) mostly concerned itself with general eligibility requirements and SPD DSP support options (aka Places to Live), such as

• Direct Family Support;
• Independent Living;
• Alternative Family Support;
• Residential Care Facilities;
• Group Homes;
• Developmental Residences;
• Small Options Homes;
• Adult Residential Centres and
• Regional Rehabilitation Centres

the new Levels of Support Policy focuses much more on "support planning" and the five "levels of support", along with the requirements for each.

If you're not "in the know", when an individual transitions to the adult system they are re-assessed and given a Levels of Support rating, from One to Five.The Support Levels look something like this:

• Level One - Minimum Support
• Level two - Moderate Support
• Level three - High Support
• Level four - Enriched Support; and
• Level five - Intensive Support

What form of residential support "program support options" are available to that person will depend on what Level of Support they have been assessed as requiring.*

To come up with said Support Level, the assessment looks at

• Activities of Daily Living;
• Instrumental Activities of Daily Living;
• Health Status;
• Medical Conditions;
• Behaviour; and
• Safety

The Levels of Support Policy also deals with other issues, of course, such as

• medical care and behavioral support requirements; 
• acute nursing services; 
• chronic medical conditions; 
• end of life care; 
• behavioral support parameters; and 
• something called "discretionary case management regarding a program option". 

Of course, last, but certainly not least (and never to be forgotten) sits the the appeal process.

Intrigued? Perhaps you best check it out for yourself.

* You might want to consider asking for a copy of the Assessment after it's complete. You will likely be denied, but that's no biggie - just make an application under the Freedom of Information Act. Don't ask me why they make us jump through the hoops, but they usually do. At any rate, I think it's worth having a copy of this (and further reassessments if the Support Level is changed) just in case. Here, this might help.

** For a complete list (with links) of all policy documents under the Disability Supports Program, go here.

Let's Talk Landon Webb Guardianship ~ Part II

I must admit that this was most definitely not what I had in mind for Part II of this series, as I had have no intention of making any further comment on Landon Webb's personal situation, However, comments such as the below from the editorial in yesterday's Chronicle Herald simply cannot go unanswered.

We are hopeful that the courts will rule that, no matter what Mr. Webb’s disability, he wants to live in society and should have the right to do so. No one should be locked up because he or she is disabled or needs appropriate support in order to live successfully in the community.

Really?

No one should be locked up because he or she is disabled or needs appropriate support in order to live successfully in the community?

I can see thousands of individuals with disabilities and their family members across the province shaking their heads in disbelief ... wondering why in the world this thought had not occurred to them, too.

At any rate, I sincerely hope both the Nova Scotia Human Rights Commission and Joe Q. Public can keep that concept in firmly in mind when the human rights complaint brought by three residents of Emerald Hall is heard later this year.

Yes, this is the very same human rights complaint where individuals had been forced to live in a psychiatric hospital for up to 13 years (with no end in sight) for the simple reason that the Department of Community Services either couldn't or wouldn't provide them with placement in the community.

The very same complaint where the investigation conducted on behalf of the Human Rights Commission found that “the existence of discrimination cannot be denied", yet, incredulously  the investigator recommended that the complaint be dismissed. That would have been the end of the matter had the complainants' lawyers not fought on and brought the matter before the Commission for a review, arguing successfully that it should go forward to a hearing.

News Flash #1: Individuals with disabilities who cannot live in the community without support need someone to provide them that support.

News Flash #2: Caregivers don't work for free - someone has to pay them a living wage.

And just who would that "someone" be? For the uninitiated, it would be the provincial government in the form of the Department of Community Service's Disability Support Program.

But what happens if you are forced to rely on a system where the wait list for residential placement currently sits at over 1000 people?

What are individuals with disabilities and their families to do when they want nothing more than to live in the community but simply can't move out of their family home, Emerald Hall or an institution because the Dept of Community Services won't provide the funding for the type of support the person
requires to be successful in the community?

Could there be anything the public could possibly do to help?

Oh, wait. I know. One really helpful move would be to bash an individual's family members for the continuation of institutions in Nova Scotia.

I have yet to meet anyone in the disability community who wants to see their family member housed in an institution. Have you?

* You might have noticed that the sarcasm was a bit thick in this post. That's something I generally work very hard to avoid, but sometimes a person simply has to use whatever tools are at their disposal to make people see that a spade really is a spade.

** Part III will, as promised, will examine take a look at the alternative being presented to guardianship at the moment - supported decision-making.

Let's Talk Landon Webb Guardianship ~ Part I

Oh, the irony.

Those who know me at all (or have been to any of my presentations) know how I feel about Nova Scotia's guardianship legislation, the Incompetent Persons Act. To call it old or out-of-date would be more than flattering and undeserved. In fact, antiquated would be a much better word.  I can say, without a shadow of a doubt, that nearly every other province in Canada does a better job than Nova Scotia with their guardianship legislation.

You see, although most other provinces provide for the appointment of a guardian of the person (to make personal care
decisions for the adult) and a guardian of the estate (to make financial decisions for the adult), in Nova Scotia full powers for both personal and financial decisions are given to the guardian, even if the adult is only in need of one type of decision-making assistance. It’s an all or nothing, one size most definitely does not fit all, take it or leave it kind of deal.

There's nothing new here; in fact, this is very old news. As far back as 1993, the Law Reform Commission of Nova Scotia publicly recognized that the Incompetent Persons Act was no longer appropriate and suggested that a new law be passed that would reflect certain fundamental principles, like

• not imposing guardianship simply because a person makes a decision that others do not understand or agree with;
• presuming everyone to be competent to make their own decisions unless it is proven they are not; 
• inquiring whether other less restrictive alternatives have been exhausted;
• focusing on the adult’s abilities, allowing them to participate in decision-making as fully as possible in as many areas as possible; and
• taking into account the wishes of the adult (with the court deciding how much weight, in the circumstances, should be given to those wishes).

Two years later the Law Reform Commission actually drafted a new proposed Adult Guardianship Act. The heavy lifting was done for the government of the day. The legislation had been drafted. Cue the applause.

However, instead of a new Act, in 2007 the legislation was amended to remove terms like “lunatics” and “insane persons” and replace them with the somewhat more politically correct “incompetent person”, which some might find, in and of itself,to be rather ironic.

And yet, that is not the irony I am referring to.

Nova Scotia's First Family Demonstration Project

I'm not sure why I have put off posting about this for so long. It definitely wasn't intentional - perhaps just a by-product of how busy my life seems to have become between going back to practice and what I am about to share.

Show of hands, please ... how many of you remember the NDP government's Roadmap for transforming Nova Scotia's Services for Persons with Disabilities Program (as it was then known)? Sure you do, remember the election campaign when all three parties endorsed the Roadmap and promised to implement it?

Now before you say anything, I must admit that I, too, was very cynical had my doubts - after all, how many times have the names of the Programs been changed? And how many times has government commissioned reports, conducted studies and, above all else, promised to change things ... all with no real or meaningful results?

So it was with great surprise (and maybe a little trepidation) that two other families and mine accepted the Department's offer last summer to turn our Transition House Project* into one of the long-awaited pilot projects for the Roadmap.

It took almost nine months to get here but I am pleased to say that my oldest daughter is one of the participants in the Province's first Family Demonstration Projects.

She has two roommates - not individuals imposed upon her (or she upon them), but two young adults that that she has grown up with and who share similar interests. Two good friends.

I must say that they have a VERY nice home. Trust me when I tell you that most of us would have killed to have our very first place out on own as nice as theirs.

But most important of all, our young adult children have the funding required to engage the support people ("house buddies" as we call them) needed so they can successfully live in their own home in the community.

Let's be clear here. This is most definitely not just enough group or small options home in disguise - we, the families (in our particular situation) decide what is needed to ensure that this will be successful for our young adult children. We, the families, are calling the shots - not the government or some residential service provider.

However, as usual, the devil is always in the details. In that vein I have some bad news and some good news for you.

The bad news is that the process, itself, of getting from the idea dream to reality was long and more than a little painful, for both sides. The good news is now that two different groups of families have successfully negotiated with the government and have committed to being in the Family Demonstration Project and one group is successfully up and running, the process for you and your family should be much, much smoother.

What's this all mean, you ask?

To put it simply ... here it is. The time has finally come. What is your dream for the ideal living situation for yourself or your family member? The time is here, people. It can and is, in fact, being done.

Full disclosure - it's a lot of work for the families to take on, there is no denying that. The Department tells us that Third Party Administrator Funding** (meaning that a third party would actually be responsible for handling the all the day-to-day tasks in making sure the financial end of things runs smoothly) won't be available for another two or three years. That leaves us, the families, to take on all aspects of managing and administrating the home, at least for the time being.

But trust me when I say that this is huge - huge for my daughter, for her roommates and for my and their families. But, most important of all, this has the potential to be huge for all persons with intellectual disabilities and their families in this Province.

Break out the band. Pop the champagne corks. We already have.

* Most definitely a story for another day.

** The Roadmap calls for participants or their families (as the case may be) to have the option of either managing the funding themselves or having a third party (I believe the plan is to redefine the roles of the current residential service providers to include acting as Third Party Funding Administrators) manage the funding. [See pp. iv, 23, 25 and 44 at the link.]

Time to Shake Things Up

UPDATE: It gives me great pleasure to advise that this complaint will get a hearing before a Board of Inquiry and the Disabiltiy Rights Coalition has been given standing to be added as a party. Kudos to all involved.

Anybody who has been reading here for any amount of time is quite familiar with my an ongoing love affair with the Dept. of Community Services (DCS). Don't believe me? Follow the link.

On that note, I was very pleased to (very) recently learn about the Human Rights Complaint that has been brought forward against the Services for Persons with Disabilities Disability Support program on behalf of three long-term residents of Emerald Hall.

As noted in Beth's story, Emerald Hall is intended to be an acute care in-patient unit serving clients who live with intellectual disabilities as well as complex mental and/or physical health issues. What Beth's story fails to mention is that Emerald Hall is designed to provide only temporary (up to three months) stabilization care for people who are living in the community.

Note this comment from Capital District Health's Capital District Mental Health Program Services page:

Emerald Hall supports adults living with a mental illness and developmental disability who are not able to live in the community either because of a lack of available resources or a need for intense support that is only available in hospital. Many of Emerald Hall’s current clients are long-term residents. As such its occupancy is almost always 100 per cent. However, crisis admission is sometimes available to registered clients.
(Emphasis added)

Long-term residents is one way to put in I guess - some of those "residents" have lived there for 13 years. That's right - 13 years. And that's not because it was considered medically necessary - these residents individuals have been medically discharged from the NS Hospital years ago but continue to reside there because DCS either can't or won't provide them with placement in the community.

"Sad situation, indeed", you say. "But what exactly does this have to do with my family?", you ask.

Good question. Deserves a good answer.

But before we get there, let me point out one more thing.  From the Chronicle Herald article:

A complaint over the province’s failure to provide supportive, community-based housing for people with disabilities has been accepted by the Nova Scotia Human Rights Commission.

“There has been an investigation and investigative report prepared,” Donna Franey, executive director of the Dalhousie Legal Aid Service, wrote in an email to the media late Friday.

“The report notes that ‘the existence of discrimination cannot be denied in this situation,’ yet the recommendation to the commission is dismissal of the complaint.”

Riddle me this, please. How is it even possible for a Human Rights Commission investigator to find that "the existence of discrimination cannot be denied in this situation", but then go on to recommend that the complaint be dismissed?

Is it just me or does that sound awfully strange to you too? Fortunately this story is far from over.

But back to you. And me. And your children. And mine.

This complaint, if successful, has the potential to shake up the SPD Disability Support program for all of us, in a very positive way. The crux of the case is the argument that the three complainants were discriminated against by being forced to stay in an institution, where they neither want nor need to be. That DCS discriminated against these individuals by providing assistance for people without disabilities, who are in need, to live in the community while failing for many, many years to take into account and accommodate their differing needs and offer supports for them to live in the community.

Can you imagine being forced to be live in a locked unit in a psychiatric hospital even though you neither wanted nor needed to stay in the hospital, let alone in a locked unit?

Can you imagine being unable to properly develop or receive an education, of being deprived of the chance to work, make and interact with friends and do any of the myriad of other things that you and I take for granted in the community?

How about being exposed to the problems of living in a psychiatric ward, including noise and the risk of violence on a daily basis?

Can you imagine your feelings if you were  repeatedly told that you would be found a home in the community but it never happened?

I can and it makes me shudder.

At this point, we can only hope and pray that reason and the rule of law will preside when the matter goes before the Commission for review and a decision is made on whether to dismiss the case or forward it to a board of inquiry.

Whazzup With That Roadmap, Anyhow?

Everybody needs a hero, right? I think I may have found (one) of mine.

This guy right here. He impresses me.

Why, you ask?

Because, in the midst of all his other work, he has written repeatedly on some very important issues for the disability community. And he's not showing any signs of letting it go. You have to like that.

What's up with the @DCS roadmap for people with disabilities? http://t.co/eEBsrmB7LD #nspoli @MMCLAW
— robert devet (@DevetRobert) April 1, 2014

And that raises a very important question - what is up with the Department of Community Services Transition Roadmap (aka The Roadmap)?

The report, written by a joint group of civil servants and representatives of community organizations, calls for the phasing out of large institutions, a more individualized approach in terms of care and funding, and altogether a new emphasis on changing services to better accommodate people with disabilities.

The short answer ... Hell if I know.

The sad reality is that the best information I have comes from Robert's article. Much like Sgt. Schultz, I see nothing, I hear nothing, I know nothing.

But fear not, for others know much, much more than I. Let's see what Robert has to say:

At the time the department, right in the introduction to the report committed to "implementing these recommendations over a five-year time frame, with major action steps for each of the ten recommendations being plotted over 2013-14 through 2017-18."

.  .  .

That was September of last year.

Now it appears things are moving ahead, but not at the pace that the report suggested.

Of the thirty or so action steps scheduled for the previous fiscal year 2013-14, not one has been completed. But work has started on all of them, Elizabeth MacDonald, departmental spokesperson, tells the Halifax Media Co-op.

Stakeholder provincial advisory groups, which according to the report should have been in place by now, have not yet been announced.

 Guess who else apparently knows something? Wendy Lill.

Wendy Lill, playwright and former Member of Parliament, has been advocating on behalf of people with intellectual disabilities for a very long time. She was co-chair of the team that helped shape the transition roadmap.

Just two weeks ago she attended a roadmap progress update for stakeholders organized by Community Services. That was also the first update provided by the department since the roadmap was launched seven months ago.

"After that meeting I am hopeful that there is some real movement happening and that there is good faith there," Lill tells the Halifax Media Co-op.

Apparently, we are to hear more about a series of pilot projects "in the spring" [wait, isn't that, like, now?] and the membership of advisory groups will be revealed some time after March 31st [so, again, that would be, like, any time now, right?]. But not just that - "a training program" for "care coordinators and service delivery people" is on the way. Thank God for that. Just, please, don't ask me what it means - I'm not entirely sure.

But, hey, know what I do (think I) know? Politics. I can talk politics. Let's try that.

The Roadmap was originally brought forward by the NDP government. The very same NDP government that a lot of people, myself included, were pretty frustrated with. We were frustrated because we expected CHANGE with our first NDP government, real CHANGE. And we didn't get it, or, at least not as fast as we wanted. It was that very frustration that caused played a large part in the NDP's defeat in the last election.

So now we have a new government. A Liberal government. And I have to wonder if people will be as hard on them, expect as much change as quickly from them, as they did our last government. Because, if so, I am pretty sure we will have another epic fail.

In the words of Wendy Lill:

"Things are dreadful now, [the Department is] spending a lot of money and they are getting very poor results," says Lill. "Strong arguments have been made that [the new way] can be sustainable, and they have leadership that is mounting that argument in a very strong way."

Yeah, they are. And how much (and how fast), if at all, that changes will be up me you and me. That's right, you. And you. And you. And me.

And that takes me back to why I am so grateful for Robert Devet's continued writing on these subjects, for his efforts to hold our government accountable for what was promised. But that you and you and you and I can do half as good of a job in that regard.

Pertinent and Timely Questions in Criminal Law (The Wrap Up) ~ Part III

UPDATE: Thoughts from some of those in the trenches (the president of the NSGEU and a retired community mental health worker) on these sorts of situations: 

Both Jessome and Reece agree that people with diminished capacity should not face criminal charges for their actions. They say there are alternative ways to address their behaviors. 

“No matter what the disability is, consequences can be put in place so people understand that this is not an acceptable behavior,” said Jessome. 

“Employers need to minimize the risk, and they don’t do a good job at it. 

“There are a lot of people who don’t stay in the profession where they work with people with disabilities because they can’t get the safety issues death with.”

I received the following comment on this post regarding Anna Marie Tremoni's interview with Nichele Benn and her mother on CBC's The Current:

The problem is that community services has too many individuals to care for, and too many of these cases fall between the cracks of mental health or community services. However, if you were to look into the history of these clients, you cannot just blame bi-polar for the reason for the Amanda Murphy assault charges. Have there been many assualts done by this woman?I'm guessing yes. And her family.. How long has she been apart from them? I'm guessing they haven't been able to manage her for years and she's probably been in and out of instutitions and group homes. You are right, more policies do need to come into play for housing. However, letting serious offences be pushed under the rug by saying she is either cognitively delayed and/or has a serious mental illness is not solving the problem.

After I finished shaking my head, I asked myself what, in particular, it was that some people just aren't getting. The answer, of course, was obvious - well to me, anyway. They're missing the fact that (on at least one level) this isn't about bipolar or epilepsy or any other such condition. It's about developmental age.

But before we go there, let's back up for a second; back up and try to wrap up this trilogy on individuals with special needs and the law.

There are various places where I, personally, believe the criminal justice system could be doing a far better job when it comes to individuals with special needs. One, in particular ( a pet peeve of mine, if you will) is in how it treats complainants with special needs.

In particular, I am referring to the "hate propaganda" provisions of the Criminal Code, which create an offence for "advocating or promoting genocide", defined as certain stipulated acts "committed with intent to destroy in whole or in part any identifiable group". As you will recall, although the term "iidentifiable group" includes any section of the public distinguished by colour, race, religion, ethnic origin or sexual orientation, there is mo mention of disability. The same is true with respect to the provisions of the Code concerning the promotion of hatred.

A similar pet peeve of mine is how the criminal law takes absolutely no notice of a complainant's intellectual or developmental age when it comes to luring an individual to engage in sexual activity. We protect our "children", of course; but anyone over the age of 18 years is fair game, no matter their developmental age.

And yet when it comes to the Nichele Benns and Amanda Murphys of the world, I must admit that I did not initially see these situations as a problem with the criminal justice system, per se. My reasoning being that since such cases should not be brought within 1000 yards of the criminal justice system in the first place, there should be no problem.

If the rest of the "system" (read, in this case, the Departments of Community Services and Health) was working properly, charges would never have been laid in these situations. The only *fault* I initially saw with our criminal law system was that prosecutors were exercising their discretion to lay charges in cases where a completely different decision should have been made.

At least that was the way I saw it until I read about Amanda Murphy's most recent court appearance. It was this paragraph in this story that caused light to dawn on this particular marble head.

“I’m not sure,” Gerald MacDonald, Murphy’s lawyer, said when asked after her appearance if there is a precedent stating that someone has to be dealt with by the court system according to their chronological age rather than their mental one.

That, you see, was a brilliant question asked of Mr. MacDonald. That is *the* question that needs to be asked and answered properly in these cases. And I say "properly" because if the answer happens to be that there is no such precedent, than it is long past time to create one.

The discerning reader will have noted that this very issue of whether or not there is any precedent for dealing with an accused according to their chronological age rather than their mental age is the very same difficulty we faced in pet peeve #2, above, where no recognition is given to a complainant's developmental age, even if the defendant is well aware of it.

All of which made me realize that a significant problem we face with Canada's criminal justice system is that it does not appear to offer any recognition of an adult's developmental age; not with respect to

1. the effect it has on an accused's ability to formulate the mens rea necessary to be found guilty of committing most crimes (including both assault and assault with a weapon);
2. the public policy issue of whether we should morally be prosecuting individuals who would not be subject to the criminal law if their developmental age matched their chronological age; and
3. the public policy issue of why the criminal law fails to protect individuals it would otherwise protect if their developmental age matched their chronological age.

Perhaps as an aside (perhaps not), those last two points are almost enough to make a person question if our criminal justice system is guilty of discrimination, if it violates some of those very "fundamental rights and freedoms" that Canada's Constitution vows to protect. How ironic that would be.

But that, my dear friends, take us back to that anonymous commenter - the person who, much like our criminal justice system, apparently fails to see that (at least one of) the issue here is that Amanda and Nichele have developmental ages of children.

Of course this isn't the only thing this person fails to understand.

Holding Their Feet to the Fire

There was an excellent interview with Archie Kiaser regarding Nichele Benn's situation on the Global Morning Show today. Unfortunately, no matter what I do, I simply cannot embed it. So I'm afraid that you'll just have to follow the link. Go ahead. I will wait for you.

As Archie so rightly points out, the criminal justice is simply not geared to deal with people with mental illness and intellectual disabilities. In his words, it's all about "judging and punishing" and, in this case, that's not going to do Nichele or society any good.

In my words, shame on the Department of Community Services, Quest Regional Rehabilitation Centre and the Crown prosecutor involved for creating this situation in the first place.

Think about it - the comparison of Nichele's situation to that of Ashley Smith isn't that far off the mark, is it? Is this what Nova Scotia will become known for? Will/Can we allow this to continue?

There is obviously much more to be said (and done) on this subject, but I'm afraid I must leave you for now - Part II on the Criminal Justice System simply isn't going to write itself, is it?

Good News on the 'Special Needs' Policy

Some very good news to share on that "special needs' policy under Income Assistance that the Nova Scotia government quietly changed in August, 2011.  Remember this?

Well, I am pleased to report that as of October 1st, that policy has been changed again. This time in a good way. Check it out.

Changes to Nova Scotia's Special Needs Policy

"Never doubt that a small group of committed people can change the world. 

Indeed, it's the only thing that ever has."

~Margaret Mead

The Rest of the Story ...

I was very honoured to be asked to appear on the Global Morning News show yesterday (July 30, 2013). Many thanks to fellow advocate, Krista Lettues, and Rhonda Brown, executive producer of the Morning News show and a true friend to the disability community.



BUT.

Now why is there always a BUT??

I really wish we could have had more time to get into more detail on these issues. I really wish I had the chance to share the rest of the story.

You see, as part of my preparation for the interview, I went back and reread the original news article which led to this blawg post, which, of course, led to the interview.

But this time was different. This time, I also read the comments following the article. If you haven't read them, please go do so. It's okay, I will wait for you.

Now, if you're here reading this blawg, I am going to assume that there's a very good chance that you were as upset by some of those comments as I was. But after I calmed down a bit lot, it got me thinking. There will always be idiots out there. I know that and you know that.

But some people aren't *idiots* per se; I would say they are more "ignorant", in the true sense of the word.

ig·no·rant 

/ˈignərənt/

Adjective

Lacking knowledge or awareness in general; uneducated or unsophisticated. Lacking knowledge, information, or awareness about something in particular: "ignorant of astronomy".

Yes, ignorant as in simply not knowing. As one simple example, witness the comment of *myop*:

Animals should not be part of the welfare systems resopnsibility at all no matter what reason people have them other that assistance for the blind. 

Now here's a person who has obviously heard of service dogs for the blind. And only dogs for the blind. He or she remains blissfully unaware of all the other service animals out there - hearing dogs, dogs for persons with physical disabilities, dogs for persons with autism, seizure dogs ... I am sure the list goes on. But *myop* is blissfully unaware.

Here's another comment by *myop*:

IT SHOULD ONLY BE USED FOR THE BASIC NECESSITIES OF LIFE

Do you think he/she has any concept that what constitutes the basic necessities of life might vary between a person with no disabilities or chronic health conditions and those who live with these conditions? I guess not.

And you just can't beat the comments of *KannH*:

Correct me if I am wrong but wasn't Welfare created to help people get through bad times until they get back on their feet? When did Welfare become a career? I was on it once for 2 months between college and my first job starting but I have worked full time ever since. I am greatful it was available back then to help me but I would have never wanted to be on it long term...I had way more self respect.

Yes, dear, you are wrong. So consider yourself corrected.

For far too many people welfare is, indeed, a career. Not their chosen career but the only one our society leaves open to them. I would not choose for my daughter to be a social assistance recipient for the rest of her life. Nor would she choose this for herself. In fact, she desperately wants to have a job, live in her own place, be like everyone else her age. But that, quite simply, is just not in the cards. And yet, as hard as this might be to imagine, *KannH*, this doesn't mean she has any less self respect than you.

I could go on, of course, but snark only gets one so far.

So here's the point I really wanted to make.

After reading those comments, I got to wondering just what percentage of the social assistance caseload in Nova Scotia consisted of persons with disabilities. So I did some research and came up with some very interesting facts. In 1996 (the most recent year with available statistics), fully half of the welfare case load in Canada was made up of persons with disabilities. That's right - half of the case load. And in Nova Scotia, that figure was even higher - 57.5% of the people in receipt of social assistance in Nova Scotia had a disability.

It's funny how many people seem to have that visual of a single mom popping out baby after baby after baby to take advantage of the "generous" welfare funding or only see those in receipt of "welfare" as neglecting their children while watching their large screen TVs, doing and/or selling drugs and spending all their tax money on cigarettes. I suppose there are some people like that - there must be, considering that everybody seems to know at least one such person.

But how ironic, considering that over half of the people in receipt of social assistance in Nova Scotia are disabled. The majority are not, in fact, scamming the system. They aren't there to take advantage of the *generous* benefits, because they're too lazy or don't have enough self respect to get out of the system - they are there because they are simply trying to survive and are pretty much literally trapped.

I am thinking it is high time people got a good education in exactly who is receiving their hard-earned tax dollars and exactly who should be subject to mandatory illegal drug testing. Because the other ironic thing I find is that if you mention persons with disabilities to the majority of the people who make those kind of nasty comments, they immediately respond along the lines of "Oh, I am not talking about those people. Those people are okay. I am talking about the majority ...".

The majority you say?

So now you know the rest of the story. Now you know what I wished I had had the chance to say on the Global Morning News show.

Oh well, hopefully there will be a next time ...