"... To Each According to His [or Her] Need"

Show of hands, please.

How many of us have had dealings with any of the programs under the Province's Services for Persons with Disabilities Program?

It might have been Direct Family Benefits (formerly known as In Home Support), Alternative Family Support or Independent Living (formerly known as Supported Apartment). Or perhaps it involved Small Options, Group Homes/Developmental Residences, Residential Care Facilities, Adult Residential Centres or Regional Rehabilitation Centres.

Anyone? Anyone at all? Yeah, I thought so.

For those of us so blessed, how many have been told that the amount of respite available to your family member is capped at a certain amount or that the Department of Community Services will only pay $10 per hour for respite workers and, if yours happen to charge more, well, so sorry but you will just have to make up the difference yourself?

I see those heads nodding.

How about this one - anyone ever been told (and I mean told) that the government is not obligated to provide these programs, that they do so voluntarily. With the implicit undertone being Do. Not. Rock. The. Boat. Do. Not. Push. Us. Too. Far. Or. You. Will. Find. Yourself. Without. Any. Help. Whatsoever.

Well, then, you're sure to really appreciate this March, 2011 decision from the Nova Scotia Supreme Court.  Check it out. You're going to love it. Trust me.

But first, let me ask you this - how many times have I suggested that we need to help one another, to stand and work together when it comes to getting the system to meet the needs (and respect the rights) of individuals with disabilities and their family members? I only ask because, to me, this decision is a prime example of just how (and why) that works.

Anne Boudreau went to court to get her son and herself the help they desperately needed, the help the government refused to provide. But in winning a victory for Brian and her family, she also won a victory for you. For me. For all of us. Which explains exactly how I view the world - anything I do for one of my children, I do for other children. And anything I do for another child or family, I do for my children and family.

Brian Boudreau has autism and requires 24/7 care. To assist with this, his mother received money to pay for part-time and full-time personal care workers from the Services for Persons with Disabilities (SPD) Program. But the Boudreaus were unable to keep these workers because they couldn't pay a sufficient hourly rate. Needless to say, this constant turnover was not in Brian's best interests, particularly given his very high level needs.

Receiving funding of only $10 and $12 per hour respectively for part-time and full-time workers [the hourly rates set by the Department, which have remained unchanged since 1998], when the average hourly wage in their area was $14 per hour plus benefits, it shouldn't have surprised anyone when they went through seven workers in the span of one year.

Her request for extra funding to allow her to pay $12 and $15 respectively to the part-time and full-time PCWs denied, 

["As you know the Direct Family Support program bases its respite amount on $10 per hour. Unfortunately Services for Persons with Disabilities (SPD) staff have not been authorized to increase this hourly amount at this time. In regards to the possibility of increasing your monthly amount, in order that you can use the additional funding to pay extra per hour, SPD has not been authorized to allow any increases which result in payments exceeding $2200 per month. As Brian’s current respite allowance already exceeds $2200 per month no increase may be authorized at this time."] 

Mrs. Boudreau appealed. And although initially unsuccessful, she was successful at the second appeal level, to the Assistance Appeal Board.

The Board found that although neither the directive [in November, 2009 a directive had been issued from the Director of the SPD program limiting DFS program approval levels for respite funding to $2200 per month] nor the policy [which also limited DFS respite funding to $2200 per month] supported the appeal, neither was there any Regulation under the Act to support the directive or the policy. [You can find a discussion of how that interaction works from a legal point of view here.]

Instead the Regulations provide a guide to the intention of the Act, which allows for variance from policy and directive when it was in the best interest of the client. Sound familiar?

Not surprisingly, this result did not please the Department, who promptly took the matter to court.

Because the Board had found that Brian was entitled to the additional funding under the Employment Support and Income Assistance Act (ESIAA), one of the issues before the court was which of the three possible pieces of legislation [the Employment Support and Income Assistance Act (ESIAA); the old Social Assistance Act ("SAA"), which was effectively gutted when the ESIAA was proclaimed; or the Homes for Special Care Act] govern the SPD Program. Or, perhaps it was as the Department argued, that the Program is something done out of the goodness of their heart, with absolutely no legislative authority?

For those of us less legally inclined, I am going to provide the summation of what this case actually decided here. Those with interest can read on to see how the court came to the conclusions it did.

In other words, pay attention. Here's the important part.

In the words of Mr. Calderhead*, the Boudreau decision is very important for at least four reasons.

1. It settles, once and for all, the question of whether the SPD program is authorized by legislation (it is!) and which legislation (the Social Assistance Act and the Municipal Assistance Regulations).
2. It makes it clear that there is nothing voluntary about the SPD program. That is, once eligibility for services has been shown/accepted, a legal entitlement arises automatically.
3. Further, as with any other “assistance” under the Social Assistance Act, eligibility triggers not just a right to that assistance but one that is to be immediately provided.
4. Generally, the SPD Program will fall under the ‘special needs assistance’ provisions in the Social Assistance Act and, in situations where the legislation does not stipulate a maximum amount for such assistance, the Department should be paying “reasonable” amounts sufficient to meet the need.

Mr. Calderhead also notes that this decision establishes that the Department of Community Services must provide a per diem rate that is reasonable. In the Boudreau case, that was found to be $15.00 per hour for a full time employee, and $12.00 per hour for a part time employee.

Now, for those of you brave enough to venture further, you can READ MORE.

RDSP Survey Results

A while back, PLAN conducted a survey about people's experiences and concerns with the RDSP. The resuts of that suvey can be found here.

And I'm happy to say that given the few changes that were announced to the RDSP in the last budget, perhaps they are making headway.

One. Step. At. A. Time.

The More Things Change...

I was having a conversation with another parent yesterday about the education system. And she relayed a comment from a friend of hers to the effect that we are still fighting about the same issues as we were 20 years ago.

I don't know about the 20 year part but I do know I first brought this story to you back in July, 2008 - nearly four years ago.

Subject: Family needs support

Importance: High

There is a young woman who lives in the community with another family. She has lived with this family for over 5 years and there are extra supports provided to meet her needs. Community Services agree that she has made progress. She wants to stay there. Her own family wants her to stay there. The family she lives with wants her to stay. Her doctor has written to Community Services to say she should stay.

Community Services are opening the new institution in Lower Sackville next month. They have told the Mom that the young woman must move to the institution when it opens. They have told her, and repeated it today, that they will withdraw funding if she refuses the move.

Ring a bell?

Well, the good news is that that situation was resolved. In 2008.

The bad news? It's back. Again.

Brenda Hardiman's 24 year old daughter is diagnosed with a organic brain disorder, conduct disorder, epilepsy and right sided cerebral palsy. This is her story:

Brenda Hardiman's daughter has lived with an alternative family, for 10 years, through the Persons With Disabilities Program, Nova Scotia Department of Community Services. Four years ago the Nova Scotia Department of Community Services tried to force her move to an institution in Lower Sackville, Nova Scotia. With the assistance of the Nova Scotia Association for Community Living we were able to stop this from happening.

We are at the same place, four years later. They are forcing her, once again, and this time I'm afraid they're winning. I don't know if I have the stanima to go through this yet again. To go head to head with the Province again. It's so stressful.

My daughter's alternative family wanted to provide some separation between their work and personal lives by continuing to care for my daughter in a home for special care rather than in their home as they have cared for people, in their home, for 18 years. The Nova Scotia Department of Community Services denied their request to license them in this capacity. Their justification was that they had to put submit a request for proposals. But since there is a mortitorium on this type of care, they couldn't. This is their underhanded way of institutionalizing my daughter.

As a side comment, I picked this situation up in 2008 from an email I received. I picked it up today via FaceBook. Perhaps that's a step forward, in that we now have social media to spread our message.

But back to Brenda's story. What are we going to do?

In the words of Laurie Lawson, President of CACL:

NS is the one province that openly endorses institutions and feels they are appropriate. They are forcing individuals into institutions rather than providing the supports to live in community. Brenda received word yesterday that her daughter will be institutionalized May 3rd. Enough!! Time to mobilize and stop this practice in NS!

I'm sad to say that at this point in my life, (or at least this week month),  I just report the news. [Yeah, yeah, I know. I've barely been doing that lately.] Do with it what you will.

What's Up Your Sleeve?

It looks like the UN Convention on the Rights of Persons with Disabilities might have been put to good use in Nova Scotia this past week.

I've said before that, in my opinion, the best use of that Convention might be in the moral suasion if offers advocates when dealing with government officials. At all levels of government, apparently.

At least that's the way I read the news that Bridgewater has agreed to change its zoning bylaws to allow LaHave Manor Corp. to open a new group home.

In case you're not familiar with the story, the LeHave Corporation intended to purchase a property that was felt to be ideally-suited for use as a group home (single level, wide hallways, open living room and wheelchair-adapted), particularly for three individuals that have lived together for over 18 years. The plan was for these individuals to move together to this home.

Well, that was the plan until neighbours started complaining and the town of Bridgewater decided that the property couldn't become a group home because it violated zoning bylaws. Zoning bylaws that allow for what's known as "low density residential housing". More commonly known as single family dwellings.

Apparently, the Town viewed three people living together in the community as an "institution". Which means that either the Town of Bridgewater has even less of a concept of what community living means than the Dept. of Community Services or they simply didn't want to upset the sensitivities of their good citizens who are more ... sensitive.

At any rate, what I found most interesting about today's new story was these comments from the Town's press release:

"Bridgewater prides itself on being an inclusive community and as such wants to incorporate the intent of the United Nations Convention on the Rights of Persons with Disabilities," the release said. "We acknowledge that the rights of disabled persons are equal to the rights of any other person in our community."

Which makes me think that, in additional to the groundswell of public support from across the country, someone did some smart advocacy work by pointing out to the good Council that, like all levels of government in Canada, it, too, is bound by Article 9 and Article 28 of the UN Convention.

A handy little document to have up your sleeve, no?