Two Fer

Just a heads-up in case anybody missed it - I will be giving two presentations (hence the title of this post) at the Keshman Goodman Library (330 Lacewood Drive) in Halifax this Saturday (November 26th). The first  will be on the Henson Trust and it's use in Nova Scotia and the second (much longer) presentation will cover Supported Decision-Making and Legal Guardianship in Nova Scotia.

I've written extensively about both these topics on the blawg so if you're a wee bit confused (or simply don't have the energy to plough throw the myriad of posts), this will be a good chance to either learn it from scratch or have your questions answered.

The show starts at 1:30 and I look forward to seeing you.

Incidentally, there's no cost for this event, which is being graciously hosted by HACL.

Please RVSP by calling the Halifax Assoociation for Community Lirving @ 463-4752 or email Yvetter or Lisa at famsupporthacl@eastlink.ca. 

Guilty As Charged

I am sad to say that I am equally at fault here.
Perhaps even more at fault, given my personal connection* to this issue.

You see, although I recall hearing about the release of the Braemore Report on the radio (and equally recall my bestest intentions to get a copy of the report and write a blawg post), once again, life got in the way.

But fortunately it's not too late.  Not for me. Not for you.

Let's make sure it's not too late for them.

Dear Families, Friends and Members of NSACL

In October, 2011 the Department of Community Services released a long awaited Operational Review of Braemore Home in Sydney, Nova Scotia. This review came about after findings of abuse related to a 21 year old resident with Autism. Two days after the release NSACL along with our National Association, CACL released a press release, which has to date not been picked up by the media. We need to bring this review and our concerns to the media. The same week this review was released the news of the Ship Building contract was announced and it is believed that the review and its findings got lost. WE CAN’T LET THIS HAPPEN

I am attaching the Braemore Review...please read it... please also be prepared to read some very distressing and disturbing information. I am also attaching the addresses of Minister Denise Peterson –Rafuse and Premier Dexter in the hopes that you will write a letter in regards to the review. I am also including how you can get in touch with the Chronicle Herald’s letter to the Editor department. Letters to the editor: email letters@herald.ca And lastly I am attaching our press release.

• We need to let people know that this is not acceptable, not now, not ever and certainly not one more day. This is not what we want for our sons, daughters or family members.
• Nova Scotians should be outraged that persons with disabilities are being abused in institutions.
• Nova Scotians should be outraged that institutions exist in this province, there is no place in Nova Scotia for institutional services for persons with intellectual disabilities. Regardless of degree of disability or complexity of needs, all are equally entitled to community based support. 
• NSACL’s position paper on Deinstitutionalization is also attached to this email.

Please write letters to the editor, letters to the Minister of the Department of Community Services, the Premier and your local MLA’s. We cannot let this go unnoticed...we need to have a strong voice.

Thank you in advance for bringing attention to this matter. If you wish further information please don’t hesitate to get in touch with me.

Jean Coleman,
Executive Director
Nova Scotia Association for Community Living
22-24 Dundas Street, Suite 100 Dartmouth, NS
B2Y 4L2
469-1174
nsacl@accesswave.ca

Braemore Home Operational Review
Braemore Press Release
NSACL Position Paper on Deinstitutionalization

Honourable Darrell Dexter                 424-6600                     424-7648                premier@gov.ns.ca  

Premier, Office of the Premier

7th Floor, One Government Place

1700 Granville Street

P.O. Box 726

Halifax, Nova Scotia

B3J 2T3

Honourable Denise Peterson-Rafuse    424-4304                  428-0618                   petersdj@gov.ns.ca

Department of Community Services

8th Floor, Nelson Place

5675 Spring Garden Road

P.O. Box 696

Halifax, Nova Scotia

B3J 2T7

We know what we need to do. 
Now are we up for the challenge? 

* I have a sister-in-law residing in Braemore.

Note to Self ** ... And Small Kudo to Gov't

** Please try to remember to post relevant happenings when they actually happen.

Province Expands Program for Families Supporting a Child with a Disability

More Nova Scotia families caring for a child with a disability will soon have help thanks to a $1.3‐million provincial investment.

The Department of Community Services is expanding the income eligibility guidelines for the Direct Family Support for Children Program to support more children with disabilities who live at home with their families.

"Families want their children to stay at home and in their communities," said Community Services Minister Denise Peterson‐Rafuse."This investment is making life better for families, and shows our commitment to improve services for persons with disabilities and their families."

Effective Dec. 1, the amount a family can make and be eligible for the Direct Family Support for Children Program jumps from $47,000 to $72,000, after taxes. More than 80 additional families will now have access to this funding, which helps with costs for things like transportation, medication and respite when a break is needed. The amount of assistance a family receives varies depending on their income, assessed need for respite and family size.

. . . .

Government has increased investments in programs for persons with disabilities by $19 million since 2009, bringing the annual budget to nearly $255 million.

My apologies, I fully intended to post this the day it was announced, meaning it is now over a week old.

Still, better late than never, right?

Posted Without Comment

Visit msnbc.com for breaking news, world news, and news about the economy

A Voice in the Wilderness

Following is a copy of my presenataion at the recent CACL Conference, part of multi-person session on supported decision making. As the above title implies, I was the sole person questoning how well this concept might actually work.

A good discussion followed in which some of concerns were discussed and explained. Some to my satisfaction and others less so. Such is life.

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, Canada's Ambassador to the United Nations at the time, to the effect that 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 primarily as a mother. A mother with a legal background, a mother who walks both in the field of disability and law, but a mother.

I've tried to read some of what Michael [Ed. Michael Bach - Vice President of CACL) and others have written on exactly how supported decision making would work. I say tried, not due to lack of interest, but simply due to lack of time. Because I found it fascinating. But, quite frankly, I also found some of it scary.

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

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. After all, I listened to Dr. Condoluci speak yesterday of research showing that cross-culturally parents want their children to be healthy, happy and have longevity. I rest my case. For now anyway.

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 at this Conference demands and deserves) with the duty to protect where decision-making abilities are limited or where they are lacking needed supports or where people are vulnerable to abuse or neglect.

The Road To Hell

I've been flat-out busy lately but I can't believe it's been over a month since I've posted. So apologies.

What have I been up to, you ask?

Well, a few more presentations on Supported Decision-Making and Legal Guardianship in Nova Scotia. The effort involved in trying to start a new business (see above).

And, what I would most like to share with you, attending the recent CACL (Canadian Association for Community Living) Conference. My youngest and I headed out again and it was a great, if exhausting, weekend.

So, quickly them (much to do, much to do) some of the highlights, in no particular order:

• reconnecting with old friends and meeting new ones
• meeting Emily Eaton and her father
• hearing/seeing the infamous Michael Kendrick (author of the infamous Kendrick Report) for the first time
• the pre-conference session with Dr. Al Condolusi (a most excellent speaker/presenter)
• hearing, with my very own ears, our Minister of Community Services state that she believes that every person in this Province is entitled to live in the community, if they so choose (and briefly discussing that comment with her afterwards)

Okay, yeah, I might have saved the best for last.

Now the real question is will I ever get back here to post more about the Conference?

Let's just say I hope to but I'm not making any promises.
Because, sometimes, when I make promises, it just doesn't work out so well.

Now just what is that saying about the road to hell?

Hell isn't merely paved with good intentions; it's walled and
roofed with them. Yes, and furnished too.
~ Aldous Huxley

Where Will You Go ... What Will You Discover?

Wow ... I was updating the "Places To Be" section in the sidebar and was amazed pleasantly surprised at how much is happening in the next little while.  So much so, in fact, that I thought it might just be best to give it a little more visibility and post about it right here.

You might think this month is pretty well shot but don't be fooled, there's still four activities left for this last week of September. 

Besides the regularly occurring Social Night for Persons with Disabilities every Tuesday @ 4:00 and the Mental Health for All Coffee House running Saturday afternoons from 1:00 - 4:00 from now until December 3rd (both in Halifax), Ken Pope, LLB, TEP, Henson Trust Specialist is offering a live videoconference/webcast on Disabilities and Estate Planning this Wednesday, Sept. 28th from 10:00 am to 12:30 pm.

Topics to be discussed include ODSP eligibility and benefits, exempt asset arrangements, using and back filing the disability and caregiver tax credits, Registered Disability Savings Plans, legal guardianship and Powers of Attorney, Wills and Henson Trust arrangements, funding trusts with life insurance, RRSP rollovers to adult children with disabilities, Lifetime Benefits Trusts to receive RRSPs for children as parallel trusts, and planned giving, bequests, charitable remainder gifts and minimization of income tax on death from RRSPs.

Also on Wednesday (and yes, you can do both because this just happens to be in the evening), Nova Scotia Community College Disability Services is offering an Information Session for parents, teachers, guidance counsellors and students. The point of the session is to answer questions about the transition from high school to college for learners with disabilities including those who are on an Individualized Program Plans. Issues that will be explored include how to help someone with a disability apply to college, whether having an IPP makes a difference when it comes to applying to community college, what can be done now to get ready for college in the Fall, what resources are available at NSSC that students might find helpful and what funding is available for students with disabilities in post secondary education. And, of course, often the most pressing question for parents; "I know how to support my child in school - what's going to change now s/he is going to college?".

And that's just for September.

Success

About our little adventure in trying to get out youngest daughter into Landmark East ... I have only one word to say.

Success.

Okay, maybe nine words ... Thank you Lord.  And Thank you Dept of Education.

And, trust me, the latter are not words you would ever often hear me say.

Now, next up ...

Did You Know?

Sorry I am a bit late getting this out (public school having started two days ago) but I do have a wee bit of an excuse - having just spent the last week or so trying to get Tuition Support funding to get my youngest daughter into Landmark East, I'm a little on the fried side.

Wish me luck, please ... although the school has agreed to take her and she started on Wednesday with the rest of them,we still don't know if the funding will work out!

But on to what I am here to talk about ... in the process of trying to crack the doors of a private school for learning disabilities, I happened to learn a couple of things I thought some of you might find interesting.

So here goes ....

• Unlike the former system of a student having to be on an IPP before they could access tuition support funding, the program now calls for them to be on an IPP, to have been on an IPP or to be "working towards an IPP"; and
  
• For a parent considering appealing an IPP, the regulations use to provide that only "outcomes" or "placement" could be appealed. BUT NOW IT'S POSSIBLE FOR A PARENT TO APPEAL THE FACT THAT A CHILD DOES NOT HAVE AN IPP ... in other words, that the school refuses to put the child on an IPP. [For those wondering, this is based on a change to s. 53(3) of the Ministerial Regulations made under the Education Act]

Two rather big developments I would say. 

With regard to the first, remember that it doesn't have to be an academic IPP. It could just as easily be a social IPP that the student is "working towards".

And with regard to the latter, I have spoken with many parents over the years whose children were refused IPPs and who were effectively left with no recourse other than the possibility of a costly law suit. Not so any more.

As a final thought, if one were inclined to put these changes together- if a parent was anxious to access one of the private schools for a student without an IPP, there are now two possible routes around that obstacle - convene a meeting of your child's program planning team and see if they are willing to work towards an IPP (social or academic) for the child or, if the school is uncooperative in that regard, appeal the school's refusal to provide an IPP. 

I'm not suggesing for one minute that going through that latter appeal process would be either an easy or fun experience (it generally being recoginzed that you are almost guaranteed to lose any such appeal at the school board level) but it does potentially open a door that, up until now, didn't even exist.

And that has to be a good thing, right?

RDSP Information Workshops

Independent Living Nova Scotia (ILNS) is pleased to be offering free workshops throughout Nova Scotia to help you understand the Registered Disability Savings Plan.

Helping you save

The Registered Disability Savings Plan (RDSP) is a long-term savings vehicle to help you, your child, your family and others save for the long-term financial security of a person with a severe disability. Contributions to an RDSP could be supplemented by matching Canada Disability Savings Grants from the Government of Canada. The Canada Disability Savings Bond is also available for low-income families even if no contributions are made. RDSPs can be opened until the year the beneficiary turns 59 and Grant and Bondcan be received until the year they turn 49.

You have questions; we have answers.

To schedule a workshop in your area or for more information please contact ILNS at 453.0004.

We can also be reached toll free from anywhere in Nova Scotia at 1.877.310.4567

2011 RDSP Update

It is a pleasure to announce another new feature to our web site – videos about the Registered Disability Savings Plan (RDSP), the Canada Disability Savings Grant and the Canada Disability Savings Bond in American Sign Language (ASL) and Langue des signes québécoise (LSQ). The Office for Disability Issues developed these videos to provide members of the Deaf and hard of Hearing communities with general Program information. These videos are equipped with closed captioning and voice narration.

Also, as you may have read in the information kit recently mailed to you, the Government of Canada introduced two improvements to the RDSP, the grant and the bond that provide more flexibility to Canadians with disabilities and their families when saving for the future.

• Effective January 2011, individuals can claim unused grant and bond entitlements from the past 10 years (starting from 2008, the year RDSPs became available). This applies to new and existing plans.

• · As of July 2011, parents or grandparents will be able to arrange for some or all of their retirement savings to be transferred, tax-free, to the RDSP of their financially dependent child or grandchild when they pass away.

More recently, in Budget 2011, the Government also announced a new provision that gives more flexibility to people with shortened life expectancies when making withdrawals from their RDSP. This measure is effective as of June 26, 2011.

The contents of this information kit have recently been added to the “In Focus” box on our web site.

We invite you to visit www.disabilitysavings.gc.ca to use these tools to promote awareness about the RDSP, grant and bond among your membership. Information about the RDSP, the grant and the bond continues to be available on our web site, or by calling 1 800 O-Canada (1 800-622-6232). TTY users may call 1-800-926-9105. A detailed brochure – available in alternate formats such as large print, Braille, audio cassette, CD, DAISY, and computer diskette – is also available by calling these numbers.

Should you wish to make an inquiry by e-mail, please send your message to rdsp-orgs-reei@hrsdc-rhdcc.gc.ca.

Kindly,

RDSP, Grant and Bond Outreach Team

My apologies for mostly just passing on information received from others recently.  But it is good information and I try to tell myself that it's better to pass along such material then to post nothing at all. 

It's not that I don't have stuff of my own to write about, it's just that life can be ... complicated, at times.

Acceptable?

Article 19 of the UN Convention on the Rights of Persons with Disabilities reads as follows:

‘States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community’

But the government of Nova Scotia lacks any current deinstitutionalization commitment with institutions actively being built and/or renovated. This province views institutions as part of the acceptable continuum of residential services for persons with intellectual disabilities.

• In Nova Scotia hundreds of families/individuals are living in near crisis situations while waiting for appropriate residential supports. Many others are living in types of supportive housing unsuitable fortheir needs and detrimental to their health.

• The Riverview Residential Centre (in Nova Scotia) is ‘Home’ to 96 individuals with intellectual disabilities. A Report was commissioned after 22 incidents of abuse were reported at the facility.

• In Ontario, at least several hundred people are living in large congregate care settings such as Homes for the Aged, Psychiatric facilities, Nursing Homes, etc. for no reason other than their label of intellectual disability and the fact that they cannot access the supports they need from a more appropriate source

Meamwhile, as we await the release of the provincial government's report on the Braemore situation, a new incident of abuse surfaces.

Article 19 of the UN Convention on the Rights of Persons with Disabilities.

Right.

The Saga Continues

About this and this and that:

On August 8th, the government made very significant changes to the income assistance regulations regarding ‘special needs’ assistance. These changes cut essential health related assistance to people with disabilities. Attached to this email is a chart which makes clear the regulatory changes.

We urgently need your help in letting the government know that the recent cuts to human rights protections and services from income assistance legislation are unacceptable.

Please write/call Premier Darrell Dexter and your MLA. Let them know you are concerned about the rights of the poorest people in Nova Scotia.

Below you will find:

- Background information

- A form letter you can send to the government

- Contact information for the Premier and MLAs

You can also;

Visit the Stop the Special Needs Cutback – Defend Welfare Rights in Nova Scotia Facebook page

See footage from a press conference held Tuesday, August 16 where disabled people and allies spoke out against the cutback here.


:::Background Information:::

On August 8th government announced changes to the Employment Support Income Assistance regulations. These changes mean that special needs assistance that had been available for people who could show that they required items or services for ‘essential’ needs or to ‘alleviate pain and suffering’ have simply been repealed. They’re gone!

Particularly, from the perspective of people with disabilities, this is a significant setback in their enjoyment of human rights. The changes strip people of their right to obtain accommodative special needs services which they could show were either ‘essential’ or necessary to ‘alleviate pain and suffering’. Now, if required items or services are not found in the ESIA Special Needs Policy Manual, they can't and won't be provided.

We would like to respond to some of the arguments we’ve heard from government in the media:

"Nothing has changed"

The Department of Community Services has changed the law. In the past, courts have said that Community Services policy was not consistent with the law. Rather than change their policy to conform with the law, the government has stripped persons with disabilities of their legal rights by repealing the regulation that gave people in need the right to seek essential services.

Rights have been taken away. The government has restricted special needs – particularly in the area of health care. Now the law prohibits special needs assistance for things like "non-MSI insured services.” This is very broadly worded to apply to many health needs "items, services, treatments and substances."

This means that certain dental care including most non-emergency care, massage, physiotherapy, psychological counseling, medical marijuana, and many other health services and treatments cannot be provided prescription drugs unless they are approved as a benefit under pharmacare program

Even though the government's figures show that few people were accessing exceptional special needs assistance, this does not justify taking away the right to obtain accommodative special needs items or services. The fact that so few people were able to obtain their rights on paper does not justify taking those rights away.

“Loophole”

The government has said that people who received exceptional special needs assistance were exploiting a "loophole". It was not a “loophole”, it was the law. See the chart attached to this email explaining the regulatory amendments.

“Level the playing field”

The government says that the change was made to "level playing field", to provide the same assistance to all people in Nova Scotia.

Before the law was changed, people in need had the right to seek assistance for essential services. Now no one has the right to seek assistance for essential services. In that sense, everyone is being treated identically. It’s like saying "the law forbids rich and poor from sleeping under bridges".

In fact, the changes limit the items and services people can receive to those listed in policy and take away the ability of caseworkers, boards and courts to grant individualized and accommodative special needs. In fact, it is precisely the attitude of ensuring that everyone will be treated the same that is at the root of why this will be so harmful to people with disabilities whose needs can only be determined in context by and assessment of each person's situation--a limited province-wide list of what is covered can never do this.

"Dal Legal Aid is the cause of the problem"

The regulations were approved by our elected representatives and interpreted by the NS Supreme Court to require DCS to provide access to essential services - the attempt by government to discredit the spokespeople on this issue is a smokescreen and should not be allowed to deflect our attention from the real issue - DCS failure to implement the law, and their decision now to strip people of the rights they had on paper.

:::Form Letter::::

Dear Member of the Legislative Assembly,

I am writing to you to express my concern about the recent changes to the Employment Support Income Assistance regulations. These changes will particularly affect disabled Nova Scotians. This is a significant setback in their enjoyment of human rights. These changes strip people of their right to obtain accommodative special needs services which they could show were either ‘essential’ or necessary to ‘alleviate pain and suffering’.

It is unacceptable to take away basic human rights to “essentials” and services required to ‘alleviate pain and suffering’–especially from people with disabilities who are living in poverty!

Regardless of how many people have accessed these special needs, it is important that our government uphold the human rights and access to items and services that are necessary for them to live with dignity and good health.

I am asking this government to reverse this regressive cutback to essential health services for disabled Nova Scotians.

Thank you for your attention.

Yours truly,

One thought that has occurred to me after reading the Province's press release on this issue - the implication seems to be that perhaps the "special needs budget" may have been abused in some cases.

The statement that "Over the years, the department has received special needs requests for items and services like hot tubs, gym memberships, and humming touch therapy. These were never intended to be covered under special needs, but because the regulations were not clear, about 20-25 of these requests were approved either by a caseworker or through an appeal" sounds like, perhaps, an attempt to show the public that this government is acting responsibility and ending cases of funding being provided in perhaps less than legitimate circumstances.

To which I respond that IF funding has been provided in situations that are not completely on the 'up and up", the solution is to put safeguards in place to ensure that does not occur.

The solution is NOT to take services away from those who legitimately require this assistance and have the medical proof to back up their claims.

And, now, I must go get some work done. But I hope to perhaps pop back later with some more legally-developed thoughts on this situation.

In the meantime, let's get out there and NOT let this happen. You know what to do.

But before you do, make sure to check out the three videos from the press coverage. It will be well worth your time to help you solidify your thinking and the facts around this matter.