Not A Very Merry Christmas

We've talked a bit here and there about Nova Scotia's track record with institutions for the disabled - both the fact that more money seems to be going into them and how residents are treated.

Out this months is the Report on the Riverview Home Corporation released by the Department of Community Services.

As noted by the Nova Scotia Association for Community Living, this is most definitely not the time of year that we look forward to reading reports. That being said, it is requested that we take the time and reflect on our lifestyle in comparison to the descriptions given in this report.

The conditions described are appalling. It is unacceptable and unthinkable that citizens of this province should have to endure such lack of privacy, overcrowding and lack of service. They are unacceptable working conditions for staff as well.

Riverview is an institution outside New Glasgow. NSACL urges that you all take time to read the report and to take action. Please write or call your MLA , the Premier premier@gov.ns.ca or dexter@ns.sympatico.ca 424-6600 and the Minister of Community Services, Denise Peterson-Rafuse petersdi@gov.ns.ca or denisepetersmla@bellaliant.com 424-8296 to express your concerns.

We wish you all peace and health and joy for the coming year.

Nova Scotia Association for Community Living.

To which Dorothy of the Disability Rights Coalition adds this:

We who have loved ones or have a disability ourselves should really be alarmed about this report; our government is in the process of building and renovating more institutions in Nova Scotia. They do not seem to “get it”.

If Newfoundland closed down their institutions in 1996 and Ontario closed their last institution last fall why is it our government feels they have to continue operating these places, they bear no resemblance to a home; they are more like penal intuitions.

Every study indicates that with the right kinds of supports people with disabilities
not only are able to live in their communities they thrive there.

What more must we do to let our politicians understand. I hope as Mary suggests you will all take the time to write or speak to your MLA’s.

'Nuff said.

The Need to Reform the Law of Guardianship

Many have a problem with the whole concept of guardianship. It's too intrusive. It doesn't recognize the rights of the disabled person to make choices in their own lives. It's expensive, complicated and takes a long time.

In fact, over a decade ago, the Nova Scotia Law Reform Commission advocated for dramatic change to this Proince's gaurdianship law, noting problems with the law's

• offensive language;
• all or nothing approach;
• emphasis on property;
• lack of monitoring of guardians;
• lack of respect and autonomy; and
• Charter violations

And to a large extent, I agree with these concerns.

As we discussed previously, the assessment of "competency" under our law is also an all-or-nothing evaluation. People are labelled as "competent" or "incompetent", without recognizing that people may be "competent" in some decision-making areas and not in others. As well, people may be "incompetent" only some of the time. There are, of course, some examples of people who are totally unable to decide, such as a person in a permanent coma, but this is quite rare and most decision-making limitations are partial.

In view of the principles of autonomy, respect and equality, this all-or-nothing approach leaves a lot to be desired. And it's important to realize that not all provinces have taken the all-or-nothing approach to guardianship that Nova Scotia has.

Under the Canadian Charter of Rights and Freedoms, all adults have "the right to life, liberty and security of the person". The appointment of a guardian results in the loss of our fundamental rights and freedoms, particularly the right to liberty. This means that the Charter gives people the right to the least restrictive alternative when there may be a denial of their freedoms, such as when a guardianship application occurs.

The Charter requires some basic procedural safeguards which should include the following:

• a fair and impartial hearing during which the person is entitled to full legal rights including the right to be notified of an application and hearing;
• the right to be represented at the hearing;
• the right to be heard at the hearing;
• the right to an interpreter;
• the right to call, examine and cross-examine witnesses;
• the right to review documents that are submitted to the court;
• the right to secure an adjournment of proceedings;
• the right to be informed of the outcome and the reasons for a decision; and
• the right to an appeal.

It's important to recognize that although many of these safeguards are currently available under the Incompetent Persons Act, it is often extremely difficult for a person subject to a guardianship application to make use of them for a number of reasons such as lack of knowledge about the legal system, a lack of support and assistance, as well as an inadequacy of financial assistance to hire a lawyer.

Also, adults should have the right to "procedural fairness" before having a guardian appointed. The inadequacy of procedural safeguards can be an area of concern with the way in which the Incompetent Persons Act is applied.

An adult may have difficulty opposing a guardianship application, because the proceedings are often seem as complex, intimidating and expensive (although I question whether this perception is always accurate, but more on that in another post).

Hearings themselves may also be lacking in terms of procedural fairness. The adult is usually not present or represented by a lawyer. Medical evidence is often accepted without question, and medical practitioners are also absent from court.

Once a guardian has been appointed, the adult will have difficulty challenging the order by way of appeal or by seeking to revoke the guardianship order. Where a person no longer has control over his or her affairs, he or she may also lose the right to start a legal action and the "ability" to instruct and pay for a lawyer.

In a later post, we will look both at some of the other options available to guardianship that aren't currently available in Nova Scotia as well as what the Law Reform Commission, itself, proposed for a new Adult Guardianship Act in 1995.

We will also tackle that concern of just how expensive, complex and time-consuming a guardianship action is.

Absolutely Awesome

That would be the IWK Pediatric Rehabilitation Department's 2010 Winter Program Catalogue.

There are activities and programs for both physically and mentally challenged youth and their parents/caregivers.

Here's just a sample

• a workshop for children with brothers and sisters with special needs;


• a new sexual education program teaching lessons, facilitating activities and leading discussions covering a variety of issues related to sexual health such as self-image, dating and relationships, emotions, sexual identity, and safe practices;


• the January - May 2010 Launch Program (for caregivers of challenged youth in junior or senior high school);


• a preschool leisure program; and


• and a six-week Junket of food and fun (learning how to plan, shop for, and prepare healthy snacks and meals)

This looks like really good stuff. Check it out.

Oh, yeah. The registration form can be found here.

Provincial Autism Centre Newsletter

There's lots of interesting stuff in the latest Autism newsletter, which you might want to check out.

From their social groups for teens and adults, a new supported employment program (very cool, that), a message from Susan Bryson on the Early Intensive Behavourial Intervention Program, a 'Parents Corner' on the realities of traveling with our children on the spectrum [if only I had read this (or had a half a brain to think it through myself beforehand) before our trip this summer ... airport security... DUH!) to some very interesting looking books, there should be something for just about everyone.

And I'm sure I don't need to remind anybody reading here that even if a challenged child doesn't sport the label of "autism", many of the same challenges and creative solutions will still apply.

Happy reading!

'But I Still Don't Agree With Gaurdianship ...

You've read the various reasons why I might recommend you consider guardianship for your adult child with a significant mental disability. And what I've had to say about how and why other less restrictive options might be limited or inapplicable. And yet you still don't agree with guardianship (from a philosophical point of view). And not only that, but you're not so sure your adult child would legally qualify for it anyway.

Which would leave you (and them) exactly where?

It's true. The effect of an order made under the Incompetent Persons Act does severely restrict the rights of the person who is the subject of the order. Most guardianship orders restrict the following rights:

• the right to deal with her or his property;
• the right to vote in an election;
• the right to be a juror;
• the right to consent to or refuse medical treatment;
• the right to start a civil action or to defend one; and
• the right to marry or divorce.

Legally, it is, indeed, an all-or-nothing approach.

Unfortunately, the Act does not allow for the separate appointment of a guardian of the person and a guardian of the estate. And there are usually no limits to the guardianship order so that most guardians have full powers to make most, if not all, decisions for the adult.

BUT.

Other than enduring powers of attorney (POA) and personal care directives (with their many limitations, not the least of which is the issue of the capacity to enter into one), what other options are there in Nova Scotia?

Sure, British Columbia has legislation allowing everyone (even if they can't manage their own affairs) 19 years of age and over to make a document called a "Representation Agreement", which permits a person to create a legal Plan giving authority to someone else when a person needs assistance managing their affairs. Which can cover financial and legal matters AND health and personal care matters. But there's nothing comparable in Nova Scotia.

And although I most wholeheartedly agree that the law of guardianship needs reforming in Nova Scotia (and will post more on that very topic later), the bottom line is that at the moment it's all we have in Nova Scotia.

And consider this, after you hold a POA and a personal care directive in your hands, haven't you effectively taken away just as much power and rights from your adult child as if by guardianship?

But no, you respond. I don't have to exercise all those rights all of the time. I can let him do what he is able and only step in where necessary.

Indeed. Same as with guardianship.

Because from a practical point of view, nobody is going to know that a person has a guardian unless they are explicitly told. Meaning that if your son or daughter walks into a polling station with their voter registration card that came in the mail, is anybody really going to know that they have a guardian? And that that means they cannot vote? Or are they just going to smile, direct them to the proper booth and explain how to fill in, fold and return the card?

Under the Nova Scotia Civil Procedure Rules, a person "who is not capable of managing their affairs", must start, defend, contest and respond to a civil proceeding by either a named litigation guardian or a guardian under the Guardianship Act (which applies to children) or the Incompetent Persons Act. So I can't see how having a guardian appointed really takes away too many rights there.

Since marriage is considered a civil contract a person for whom a guardian has been appointed cannot marry since they will not be considered capable of entering into a contact. Although that would be equally true of everyone considered legally incompetent, whether or not a guardian has been appointed.

However, when you consider the fact that every province in Canada, including Nova Scotia, allows for teenage marriage, provided there is parental, guardian or court consent, I have to question why a person who has a guardian appointed could not marry as long as they had their guardian's or the court's consent. And if you have been allowed to marry then ... yeah, you're going to be allowed to get divorced.

And when it comes to medical treatment, if you're the guardian then doesn't that mean that if you consider it appropriate you can allow the person make their own decision about whether or not to accept a particular medical treatment?

I'm just saying ...

... And I Probably Couldn't Get It Anyway'

I've heard a few parents comment that they probably couldn't get guardianship of their adult child because the child was too high functioning. I've given this matter some considerable thought and from what I've seen I am rapidly coming to the conclusion that as long as you have two doctors willing to back you up, you most likely will be successful in getting guardianship even if your child is fairly high-functioning.

I expect to be in the same position myself in a few years with my oldest daughter. She is very verbal and very capable of making her wishes known but as far as I'm concerned (and as her neurologist agrees) the problem is that she doesn't and won't have the ability to manage her money, keep herself safe and live as independently as she would like.

And I don't think it can ever really hurt to try for guardianship if, in your opinion as the parent looking out for your child's best interests, it is is warranted. If you can get two doctors onside and as long as no one heads to court to object, I think chances are good you will be successful. And, if you're not, I don't see how you're really in any worse position than you were before.

And even if you have only one doctor who advises you that you are well-advised to seek guardianship (it seems like it often often happens that while a specialist might agree, your family doctor won't or it might be that your child only sees one doctor), that doesn't mean it's a hopeless proposition.

Sometimes a family doctor will 'change their tune', so to speak, if they are presented with a copy of the specialist physician's completed affidavit and will then agree to provide their own. Even though they initially refused.

Or, if not, you could always explain the situation to the one doctor you do have onside and ask if they could refer you to another doctor who might be willing to assist. Of course, that new doctor would have to meet with you and your child in order to do an assessment. But that likely wouldn't involve much (if any) more than one visit.

I was actually surprised by the response of our pediatric neurologist when I first broached the subject with him, asking if he would, when the time came, be willing to support me in an application for guardianship of my child. Yes, he would. But then he added, much to my surprise, that, in his view, guardianship applications are a colossal waste of time and money when it comes to young adults who very severely challenged because "no one is going to do anything without checking with Mom and Dad first". But that, in the case of young adults like my daughter, who will be so much more involved and active in the community, these are the ones for whom guardianship is essential to keep them safe.

And although I might well disagree with his assessment in the case of those who are very severely challenged, I most certainly do agree that we need something in place to protect our higher functioning children. And, at the moment, the only option on the table is guardianship.

I do think the one thing to be careful about with a high-functioning individual, though, is to how you present the guardianship application to them. To make sure you present it so they will see it as something positive ("your parents will always be here to help you with those things you find difficult") as opposed to something negative ("you're not able to do this, I won't allow you do do that") and thus be less likely to voice objections to the idea.

A Good First Step

How on earth did we ever miss this?

Maybe because we're too busy whining about what he can't get right? Or maybe it just isn't considered newsworthy...

Either way, it's something that should be recognized. And acknowledged.

Yes, I realize it's only a step. But a first step is better than no step, no?

And then we might just ask when a similar move might be made in Canada.

Practical Applications: Limitations on Powers of Attorney

Continuing our discussion of the issues involved in a person with a disability executing a Power of Attorney (POA) in favour of the parent instead of the parent having to go through the guardianship process, I offer a few more thoughts on the limitations of a POA.

First of all, as was mentioned in passing before, it must be remembered that if a person is capable of granting a legally valid POA, they are equally capable of revoking it. Which means that you, as the parent, need to be beware that down the road, your child would be allowed to legally change his mind and revoke the POA. As long as you recognize and are prepared for that possibility, then it's okay.

BUT. Big BUT here, before you think you are comfortable with that possibility, that either it wouldn't happen or you would be able to sit down and convince your child not to do this, consider this.

Our adult children who are relatively high functioning, who might be able to get away with signing a POA, are also the ones at the most risk of being taken advantage of others. Because they are higher functioning, they will be out in the more community more, involved in some form of work and leisure activities, and they could be a prime target for unscrupulous individuals who want to take advantage of them. Who could, perhaps, convince them that their parents are interfering with their Independence, are treating them like a child and not an adult, and that they are more than capable of handling their own life and business. And if that person happens to be of the opposite sex, you can throw a dose of hormones into the mix. Which raises the risk of your POA being revoked and your adult child "managing his affairs" with the help of a not quite so honest 'friend'.

Secondly, since a POA only covers financial matters, if a person were to go this route, they need to consider whether they child should sign some form of personal directive, as well. [See this discussion as to the distinction between what is authorized under a POA as opposed to a personal care directive. And you can find the Personal Directives Act here.] This would allow the parent to make decisions for their child around issues of medical and personal care. Although keep in mind, that the same standard of competency as would be required to execute a POA (whatever that might ultimately be) would also be required to execute a valid personal directive.

My last thought (for today anyway) on the possible limitations of a POA, involve the Registered Disability Savings Plan (RDSP). If one of the reasons you want a POA in order to open a RDSP for your adult son or daughter, remember this. Since this wouldn't be a guardianship situation, that means the RDSP will be opened in the name of the adult child. Which raises the question of whether a person holding a POA can just walk into a financial institution and open a RDSP on behalf of another. Perhaps they can.

Although I would hope that a financial institution might require a bit more than that. Like actually wanting to see (or at least speak with) the person with the disability. Which, if that were required, would be fine as long as the disabled person appeared high functioning enough to not cause the bank any concerns. But if they come across as too challenged, a savvy bank rep is likely going to question both their competency to open the RDSP and the validity of your POA.

As I said, I'm not sure how much of an issue this might actually be in practice. Particularly as I hear some anecdotes of how some financial institutions are handling (or not handling) the process of opening RDSPs. Still, I think it's something to keep in mind.

That being said, I would be remiss not to point out that the whole issue of the need for guardianship around RDSPs is being looked at by both the federal government and PLAN with the intent of to eventually come up with a solution that would allow parents to be plan-holders for their adult non-contractually-competent children. And that, in the interim, at least some banks are accepting the argument that if the person has assigned the parent to be his representative for dealing with the Canada Revenue Agency (a process easily done), that will qualify as "a guardian, tutor, or curator of the beneficiary, or an individual who is legally authorized to act for the beneficiary". Which, it appears that at least some Canada Revenue Agency representatives appear willing to accept this situation for the moment.

None of which the lawyerly part of me would recommend. That some banks are willing to fudge the rules at the moment and that the Canada Revenue Agency appears willing to turn a blind eye to that just doesn't inspire confidence in me. Even though I do believe that the Canada Revenue Agency is committed to the RDSP and making it work and are most likely acting in good faith in what they are doing, it still makes me nervous. But then again, I could be just a little anal. It's most likely the lawyer part of me.

~ With thanks to Audrey, who inspired much of this post with her comments ~