NEWS RELEASE: DISABILITY RIGHTS COALITION

UPCOMING PROVINCIAL ELECTION

We are asking you to take action in your home communities to support and address issues relating to individuals with disabilities and their families.  We share with you our latest News Release and ask you to also share/post it on your websites/facebook & tweet away...

Contact your local candidate and ask them what their position is on the "Transformation Process"...or attend a candidates meeting...

Contact local media in your area to see whether a story could be done on these issues pertaining to the Transformation and how it relates in your community.

DRC have asked for meetings with Premier McNeil & Opposition party leaders to highlight our concerns & the issues facing our community.  This is a chance to have your voices heard.

Ask other family & community members to support you in your efforts!

NEWS RELEASE DISABILITY RIGHTS COALITION

Since 2014 the Liberal government stalls Human Rights Complaint that was filed jointly with three individual complainants, the Disability Rights Coalition(DRC) and the Canadian Elizabeth Fry Society.

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?

Inclusion ... Missing the Point?

The more things change the more they seem to stay the the same.

This time, it seemed to all start sometime after teachers and the Nova Scotia government couldn't come to an agreement for a new contract. Although not mentioned at first, the concept of inclusion and how well it is (or isn't working) eventually popped up. Right on cue. And not just in Nova Scotia; suddenly Newfoundland teachers were weighing in on the topic, too.

But none of this is new news to any of you. You've heard it, seen it read, read it, lived it.

Most of us in the disability community who have had to deal with Nova Scotia's public education system can provide a laundry list of reasons why inclusion doesn't work as well as it should. One of the biggest reasons being a pitiful lack of proper funding and resources, of course.

But again, old news. So why are we here today, you ask.

Good question. But before I answer that, let me tell you why we're not here.

1. I don't want to talk about whether inclusion as a concept is a good or bad idea. 
2. Nor am I here to talk about how we could implement it better. 
3. I'm not even here to bash the Nova Scotia government for practically setting inclusion up to fail in this province. 

No, not today. Today, I have something else in my mind. Today I want to talk about the very definition of inclusion; what it means as a concept; more specifically, what it looks like on the ground in the classroom.

No, not the dictionary definition of the word. Nor am I talking about even the more disability-specific definition of the word.

I am talking about what inclusion means in the classroom. What it really means.

Round and Round We Go

Here we go again, inclusion is back in the news. Or did it ever leave?

Frankly, I don't know about you, but I am beginning to have been finding it a little old for quite a while now.

Here's the thing folks, what we all (parent, teachers, everyone) need to remember.

Talking about "inclusion" as if the option of getting rid of it is even .. a possibility ... is ridiculous. You can't just sweep it out the door like yesterday's dirt and say "I know, let's try something new".

Remember this quote from Karen Casey back in December?

I don’t think we want to talk about caps for special needs students,” said Casey. “What we need to make sure is that we have the appropriate programming in the right environment for all students.“

As I said on the website, it amazes me how successive Ministers of Education always seem to be able to find the right words and yet, just as consistently, seem unable to implement any meaningful changes to support inclusion. Be that as it may, any whisper of inclusion being an issue for anyone is enough to SCARE many parents. In all honesty and even though I know better  - myself included, at least in my initial from the gut reaction.

So, here it is - what you and I need to remember and preach to others. Sing it from the rooftops.

It goes something like this.

INCLUSION IS NOT A PROGRAM

BUT MUCH MORE IMPORTANTLY, INCLUSION IS NOT AN OPTION.

We definitely need more resources to have inclusion work properly for everyone - our children, their classmates and their teachers. No one is going to argue with that. And yet, it's not always a question of resources, is it? Sometimes what is needed is as simple as a good solid dose of common sense.

Between my two children with special needs, I have dealt with the public school system for 17 years, seen a bit during that time.

The balancing of what’s best for every individual student with special needs will, of course, vary (and I think this is where the rub will often lie), but the entire concept of inclusion is legally protected by (from highest to lowest):

1. the Canadian Charter of Rights and Freedoms [sec. 15]
2. the Nova Scotia Human Rights Act [ss. 4 & 5]; and
3. the Nova Scotia Education Act*

You can read more about the interplay between those documents on a practical level here.

For the average parent, however, outside the IPP appeal process, the best bang for your buck can probably found at the provincial human rights level. While notoriously slow, human rights complaints are far from useless - in fact, we have seen some most excellent results from such complaints in the past.

So let them say what they will: Inclusion it not a program.

Inclusion is not a choice.

Inclusion is the law - from the highest levels of the land.

In my mind, the ONLY issue we should be dealing with is exactly how we will define the term "inclusion" for each child - I doubt there will ever any one-size-fits-all solution for students with special needs or that we could ever agree on one.

Spell it With Me Now ... A-C-C-O-M-M-O-D-A-T-I-O-N-S

For your human rights in employment education and entertainment today, I offer a little story about a pizza shop in Utah that had to pay out 'big dough' for failing to provide reasonable accommodations to an employee with Down Syndrome. 

Actually, from my (and perhaps your) point of view, it's even worse than your that - this wasn't just your garden variety failure to accommodate case - this particular employee had "happily did his job for more than five months with 'an independently employed and insured job coach* to assist him'.” 

Or, at least he had until an operating partner of the company saw him working with his coach, and ordered him fired.

Seriously? Some people companies people will never learn.

See, even though individuals with disabilities living in Utah do not have the benefit of the Canadian Charter of Rights and Freedoms (or, more particularly, sec. 15 thereof) or any of Canada's federal or provincial human rights legislation, they do (as do all residents of the US) have the benefit of the the Americans With Disabilities Act (“ADA”).

The ADA is one of America's most comprehensive pieces of civil rights legislation that prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life -- to enjoy employment opportunities, to purchase goods and services, and to participate in State and local government programs and services...

To be protected by the ADA, one must have a disability, which is defined by the ADA as a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered.

Sound familiar?

However, unlike Canadians, Americans also have the benefit of the US' Equal Employment Opportunity Commission ("the EEOC"). the organization that enforces the ADA in the employment context; meaning you bring your employment complaint to them and, if they think it is justified, they will sue the employer on your behalf. Making them, kind of, sort of like a human rights commission solely for employment issues.

At any rate, thanks to the fine work of the EEOC, Papa John's has not only 'agreed' to pay that employee damages in the amount of $125,000, but also to “review its equal employment opportunity policies, conduct training for management and human resources employees for its restaurants in Utah, and establish a new recruitment program for individuals with disabilities in Utah.”

The take-away(s) of the story for Papa John's (and all Canadian and American employers) is that

• employers must provide "reasonable accommodations" to persons with disabilities and "engage in an interactive process to determine if an accommodation is reasonable yet not burdensome"; and
• a long-term "independently employed and insured job coach" might just be a "reasonable accommodation" for a person with an intellectual disability.

Or, to put it another way, what he said:

“Employers must understand that they cannot refuse to provide an accommodation to individuals with intellectual disabilities. … Employers should embrace workers like Scott who work with such joy. I want employers to know that their obligation to provide a reasonable accommodation includes allowing a job coach at the workplace, if needed, absent undue hardship.”

* Which subject (that being "an independently employed and insured job coach to assist him") could be the subject of a blawg post all by itself, says she, as she continues to toil away at accessing funding for just such a beast for her own daughter.

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.

Breaking News from the National Self-Represented Litigants Project

You might recall me going on a bit in the past about this beast known as "unbundled legal services".



That's what I'm talking about.

But much more importantly, that's what I would be very happy to talk with you about.

Good News From our Friends at reachAbility

Well, good news if you live in the Halifax area, anyway. The rest of us just might be out luck.

reachAbility will be offering free form-filling assistance at two drop-in locations in the Halifax Regional Municipality, as well as by appointment in their Halifax office. The clinic is said to be designed to help people through the process of any application, form or document they may need assistance to complete.

These are some of the things the service can provide:

• Assistance filling out simple applications
• Assistance filling out government forms
• Assistance filling out court forms
• Help finding legal information and other resources
• Providing referrals to other legal, social or community programs

Check out the reachAbility website for times and locations.

So, as I said, a good deal if you live in the right area. Perhaps the rest of us need to be lobbying to have such services offered in the ROP.

* ROP = Rest of the Province

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.

Most Valuable Info

Show of hands please. 

Have you ever noticed that the most valuable information ever given to you on this journey has been received from another person in the special needs community and, sadly, not from those that are paid to assist our families? I know that's definitely how it was when my daughters were young and sadly it doesn't seem to have changed any.

Unfortunately, getting information in this matter is always hit and miss. That's the reason I believe that it's ivitally mportant for each of us to share whatever information we come upon that might help others. 

In that vein, I offer you "A Funding Source":

Just wanted to reach out to you all and let you know about a funding source that we stumbled upon that has turned out to be shockingly good. I thought some of you may be interested in this as our kids are all nearing adulthood.

Housing NS has a program called the RRAP (Residential Rehabilitation Assistance Program) for landlords. It is not based on your income but on the income of the renter. Their income must be less than $32,000 for your to qualify. The goal is to create long term housing for low income Nova Scotians,($24,000 available) and there are more incentives (additional $16,000 available) to create an accessible space.

Since*** now receives the Disability Support Program monthly allotment from Community Services, we decided to act as his landlords and create an apartment for him in our basement as a transition space for him to practice independent living skills and allow us to bring in more outside help in a way that isn't.  We were going to do this anyway but this program made it possible to do it much better than we could have on our own.

Turns out we were eligible for $40,000 in funding to do this. This is a forgivable loan that we do not have to pay back as long as **** lives with us for 8 years, or if he moves out we would need to rent it to another low income disabled person until the 8 years is up. The range of forgiveness is 8 – 15 years depending on how much of your own money you put into the project over and above the money they give you.

It is a lengthy process and involves loads of paperwork, zoning, building permits, inspections, and the ability to fund the project until they reimburse you once it is complete. You also need to register the money as a mortgage on your house which involves a lawyer. That being said it is well worth it, and we are nearing completion of ****’s apartment right now, which we designed to be accessible for him now and for how things may change in the future. Didn’t want to jinx it until we got the funds but it is all settled now so thought I would spread the word.

I would be pleased to answer any questions any of you might have and guide you through the process that worked for us. 

I must say, it does sound intriguing.

Let's Talk Landon Webb Guardianship, Part V

You might recall a post from back in February of this year, where I questioned whether or not that was a good time for a family to pursue legal guardianship, given what was on the horizon with the Landon Webb case. I know many of you are now well aware as to exactly how Landon's case ended.

For several years, in the presentations I have given around the Province, I have repeatedly called for a reform of the Incompetent Persons Act, noting that it is an "all or nothing, one size most definitely does not fit all" sort of deal. Apparently the court agreed.

[22] The Incompetent Persons Act takes an all or nothing approach. It allows for no nuance. It does not allow a court to tailor a guardianship order so that a person subject to that order can retain the ability to make decisions in respect of those areas in which they are capable.

Just to be clear, there were absolutely no surprises here with respect to the court's finding that the legislation, as written, is unconstitutional. Not only did Landon's parents acknowledge and agree that the Act was unconstitutional, but, from almost the beginning of this court challenge, the Department of Justice had taken the position that it would not oppose the constitutional challenge and was committed to reviewing the current Act with a view to improving it. As noted in the Webb decision, that was a "remarkable thing", as governments rarely concede that legislation is unconstitutional. In the words of the court, "It happens only where there is a clear and compelling case, such as this".

Leaving us with the question ... What now?

First, let's take a look at what did not happen; what the decision in the Webb case does not mean. To put it simply, all current guardianship orders under the Incompetent Persons Act remain valid and the decision regarding the constitutionality of the Incompetent Persons Act will not affect my current Guardianship Orders.

Now that we know what didn't happen, let's take a look at what did.

Yes, Landon successfully challenged the constitutionality of the Incompetent Persons Act. To put it simply, on June 28, 2016 (as expected) the court found certain provisions of the legislation unconstitutional, but granted one year for the Act to be updated.As noted above, all orders remain valid during this period.

The government tells us that it is currently researching and consulting, with a view to crafting a new law on substituted decision making. Which shouldn't be too difficult to do, considering the help they previously ignored were given. In fact, you might recall that the Law Reform Commission was kind enough to draft an entirely new piece of legislation for the government in 1995.

Be that as it may,this means that applications can still be brought under the current legislation until either a new law is brought in or the one-year time period has expired (which would be June 27, 2017).In addition, the process of review that always existed under the Incompetent Persons Act (contrary to what some would have you think) is still available.

Now for the really important part for your family:

The MacKenzie Friend - A Welcome Development

I'm happy to share a great idea to assist self-represented litigants (SRL) in court, one which I must admit I was totally unfamiliar with until now - the MacKenzie Friend.

A McKenzie Friend is a personal supporter, chosen by the SRL, who sits “upfront” and can take notes, pass documents, or even just sit there as moral support. They do not address the court or offer any legal advice, but they can help the SRL to stay focused and calm during a hearing, and can debrief with them after.

This is important because not only are many SRL intimidated with the court process and having to appear in court, they often find it difficult to accurately and fully recall what they were told by a judge because of courtroom nerves.

Although the concept originated in the UK, it is now becoming more widely supported in Canada. You do need to ask the court for permission to have a MacKenzie Friend sit up-front with you, but chances are good you will receive a positive response.

Even better than knowing you can request to have a MacKenzie Friend with you in court is the newly-created Guide, "The McKenzie Friend: Choosing and Presenting a Courtroom Companion”. This new Guide was created by written and researched by Judith DaSilva with Julie Macfarlane (she of the National Self-represented Litigant Project fame).

The new Guide – which includes a Worksheet with a series of questions for SRLs to work through in order to assess their needs, and then to identify a person best able to assist them (and least likely to raise the ire of the other side) is available on our website for free downloads. We would like to strongly encourage not just SRLs but also agencies, paralegals and lawyers serving the primarily self-represented to take a look at this resource and consider making it available to clients.

You can read more about the origin of the MacKenzie Friend, as well as the process leading to the creation of The McKenzie Friend: Choosing and Presenting a Courtroom Companion here.

Honestly, if I were any of one of you and I was considering heading off to court without a lawyer*, I would be on to this in two minutes flat.

Did I mention that it's free?

* Yes, that would include a situation where 1) I had used a lawyer to help me prepare for court but was heading into the lion's den courtroom alone or 2) I was making a guardianship application with the help of the Nova Scotia Legal Guardianship Kit.

Let's Talk Landon WebbGuardianship ~ Part IV

Long, long ago in a galaxy far, far away (in other words, before I had a child with a disability), I was involved with grassroots political lobbying for children in third world countries. Doing that work, I became very attached to a quote from Stephen Lewis, then Canada's Ambassador to the United Nations, to the effect that eventually the day would come would societies would be judged not by their industrial or economic output, but by how they treated their most vulnerable citizens.

I approach the issue of supported decision making as both a parent and a disability lawyer. I've read a fair bit of what Michael Bach, (Vice President of the CACL) and others have written on exactly how supported decision making would work. I found it fascinating. But, quite frankly, I also found some of it quite scary.

I was particularly struck by a response given to a statement made by the Ontario Select Committee on Mental Health and Addictions that the "right to autonomy must be balanced with the right to be well". Part of CACL's response to that statement was that there is no recognized right to be well in domestic or international law.

Is this the path we want to go down? Really?

At any rate, I beg to differ - Section 7 of the Canadian Charter of Rights and Freedoms guarantees all of us the right to "life, liberty and security of the person". I would have no trouble arguing that that includes a right to be well. I recall listening to an amazing presentation by Dr. Condoluci at a CACL Conference a few years back, where he spoke of research showing that cross-culturally parents want their children to be healthy, happy and have longevity. I rest my case. For now anyway.

Please understand. I love the concept of supported decision making. In the abstract. But my concern is exactly how we are to balance the right to autonomy (that you, I and everyone else demands and deserves) with the duty to protect where decision-making abilities are limited, needed supports are lacking or people are vulnerable to abuse or neglect.

I am the first to admit that there are huge problems with the other substitute decision making options available, particularly guardianship. You might just have been living under a rock if you haven't come to realize over the course of the last several months that Nova Scotia has what is likely the most archaic, restrictive guardianship system in the country.

Sadly, we currently have a system that labels individuals as competent or incompetent without recognizing that people can be competent in some matters and less so in others. It's a very blunt instrument that doesn't allow for supported decision making and reinforces the perception that people with intellectual disabilities don't have capacity. It's a winner take all, one size most definitely doesn't fit all, take it or leave it kind of system. Frankly, it leaves a LOT to be desired. I am happy to say that, fortunately, that should soon change ("soon" being a relative term, of course).

As I said, I approach the issue of supported decision making from the perspective of both a parent and a lawyer. And the real question for me is whether and how much it is acceptable for society to act to protect individuals with intellectual disabilities.