My Disabled Sister is a Person Too, Even in Quebec

I remember clearly when my sister Sarah was born. I was thrilled to have a little sister. I remember my brother bursting into my room and announcing “Mom had her baby!” then miserably add, “It’s a girl”. He, obviously, wanted a boy. But it took a few seconds for us to both fall in love with her sweet spirit.

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Several months later however, my grandmother noted that my sister wasn’t reaching the milestones as expected.  And so began the long journey of discovery leading to a diagnosis of Cerebral Palsy, with both cognitive and physical manifestations.

Sarah, or as my kids affectionately call her “Auntie Di” (when Zach was little, “Sarah” was too hard for him to say, so he called her “Di”. Not sure why, but it stuck and years later she is our “Auntie Di”), is one of the kindest, most compassionate, caring people you will ever meet. Years of therapy, hard work, perseverance, and enthusiasm have  allowed her to lead a very respectable life. With support, she completed high school, has always been an active participant in our Church (The Church of Jesus Christ of Latter Day Saints), and since finishing school has always “worked” through government training programs (making a pitiful $130 per month) at institutions such as Winners, Celestica, West Island Readaptation Centre, Brunswick Medical Centre or currently, stocking shelves at a food bank. She loves to serve, and even though her disability has prevented her from working and leading a fully independent life, she has made sure she is a valuable contributor in society. She resides with my mother in an English speaking town just outside of Montreal, Quebec, in the same house my brother and I were raised in as well.

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At the age of 18, in hopes of developing her independence as she became a legal adult in Quebec, Sarah applied for social assistance. Knowing that she would never be able to work and be self sufficient, this was her only option of income given the physical and cognitive challenges that her Cerebral Palsy, coupled with a later diagnosed seizure disorder, that was available to her. Along with the limited funding provided by social assistance of $918/month (an amount that no one is really able to live off of, never mind when extra support is required), Sarah was also eligible to have her monthly medications covered by the Quebec government.  While not receiving much money on a monthly basis, she was able to have some level of independence. Given she lives with my Mom, who is a pensioner and a widower for the past 12 years, Sarah has taken pride and ensured she uses her own money to pay for things like her public transportation, clothing, personal affects, entertainment, as well as contribute a portion for things like food to help my Mom out.

When my father was alive, both he and my Mom were always very concerned about Sarah’s future. Knowing she would not be able to live independently, they worried what would happen to her when they both passed away. When my Dad passed away in 2003, it became more of a worry. I reassured my Mom that I would be Sarah’s guardian, however the logistics and reality of doing that are a bit tricky when you live in another province and have 5 kids of your own. A couple of years ago, my Mom and I began some estate planning to ensure that Sarah would be taken care of. At that time, my mother let me know that over many years she and my Dad had saved a little bit here and a little bit there and accumulated some money that they wanted to save for Sarah’s future. Although not much money, it was something that could be used for Sarah’s future.

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I did a bit of research and found out that, in Canada, you can establish something called a “Henson Trust” (sometimes called an “Absolute Discretionary Trust”) designed to benefit disabled persons. It is set up to protect the assets of a disabled person, as well as protect the right to collect government benefits and entitlements. The person who is disabled, has no direct access to the money, rather the trustee of the trust will only disperse funds in the event that they are needed. They often do not disperse the funds directly to the person who is disabled, rather use these funds for things such as assistance or resources that the person may require, and that obviously their meagre social assistance payments would certainly not be able to cover. In our case, although a modest amount of money, we decided a Henson Trust would be ideal to set up for the future to set aside money to help pay for personal support workers, additional caregivers, nurses and other services that Sarah would no doubt need when my mother passed away.

Unfortunately, like many things in Quebec, a Henson trust does not exist. Although it has been around and recognized since the late 80’s in the rest of Canada, it is not used in Quebec. We finally found a lawyer who informed us that although a “Henson Trust” does not exist, you can create a similar trust  entitled an “Absolute Discretionary Trust” which essentially has the same terms and conditions. We created it. My Mom took the savings that she had been saving for Sarah and moved them all to various accounts under the “Sarah Ruth Davidson Trust” in 2012.

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Shortly after, the Quebec government got wind of this new found trust account. While clearly labelled as a trust account, and clearly set up as an Absolute Discretionary Trust Account, they insisted that my sister now had too much money to qualify for social assistance (she is only allowed a maximum of $2500 in her bank account) and cut off all her social assistance funding and medical coverage in December 2013. They would not consider any arguments presented by my Mom (as Sarah is not capable of defending or representing herself), and my Mom was forced to engage a lawyer.

Sarah’s lawyers have attempted many times over the past 15 months since she was cut off to get her reinstated, but to no avail. The Quebec government has insisted that Sarah must use up her “trust funds” and in fact has also demanded back pay for funds she received the year prior!

In the interim, with no sources of funding for my sister, and no medical coverage, my mother has withdrawn some money from the trust fund to pay for incidentals, and the government now has the nerve to be accusing my mother of inappropriately “taking money from the trust fund” and are trying to force her to account for every cent that that has been used. Ironically, the majority of the money that was removed from one account in the trust fund (a chequing account), was merely transferred to another account in the trust fund (an investment account), not into my mother’s pocket as they have accused her of.  However, some funds have been withdrawn to help cover the costs of things such as Sarah’s medications, public transit, and personal effects. How else is she expected to cover these costs? According to the Quebec government, my mother – who is on a fixed pension and a widower – should cover it all.

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A request to have Sarah’s social assistance urgently reviewed (after it had been cut off for 1 year) was made and a hearing was held in January 2015 (the hearing was conducted in French, despite both my mother and sister being English speaking. Their lawyer attempted to provide some translation). The results of that hearing were shocking: They asked my mother if she was planning on kicking my sister out of the house or would she continue to allow Sarah to stay, (even though Sarah could not contribute to any of the expenses and my mother had to also cover all additional expenses such as Sarah’s medical expenses.) Obviously my mother would not kick her disabled daughter onto the street! Well, according to the government representative at the hearing, Sarah was therefore not at any real risk and there was absolutely no reason to reinsate her social assistance. The government representative also suggested that Sarah had access to an older brother and sister who could provide her with assistance if need be. Sarah would have to go to court to fight for social assistance. Sarah would have to use her entire trust account before her reinstatement would be considered.

The written position of this government representative (which was written only in French, I might add, although the lawyer’s office attempted to translate it, but it is still very difficult to understand) was that the “family trust” was to be depleted as it was the responsibility of the family to care for Sarah. Attempts were made to explain that this trust account was NOT in fact a usual family trust account, but one that was created in the same manner of a Henson trust. In fact, in early 2014 the Quebec Superior Court even heard a case almost identical to Sarah’s case and it was ruled:

In conclusion, the court makes a parallel with the common law rules applicable in other Canadian provinces and recognizes that while the statutory dispositions are different, the principles are essentially the same in Quebec and in the rest of Canada. This type of trust is already recognized in the rest of Canada and is commonly known as a “Henson Trust.” The court summarizes the rule that applies in other provinces as follows:
“The eventual and precarious “right” of the beneficiary of a discretionary trust does not make him lose his right to social security payments to which he is otherwise entitled under the law.”

But, the Quebec government refuses to acknowledge this kind of trust and this ruling. In fact now, after an appeal, another representative of the government is overseeing the file and now insisting on a full accounting of all monies that have been removed from the trust, and stating that THIS is now the reason why Sarah has not been reinstated, as she has access to the trust money and has been using it, or even her mother has been misusing it. They fail to miss the point that the only reason the trust money has ever been touched (and to a very small degree) is because Sarah has NO MONEY to live on!!!!

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Their position continues to be that as long as she is living with my mother, has access to this trust fund (which again, Sarah has no access to it), she is not entitled to benefits.

In my mind, it is simple:

1) Sarah is an adult. She is a citizen of Canada and a resident of Quebec. She files a personal income tax every year. She votes. She is permanently disabled and fits all the criteria of being eligible for social assistance based on her disability. There is no possibility of her ever being employable and living completely independently.

2) The Quebec Superior Court in early 2014 ruled that the type of trust set up for Sarah is valid and needs to be upheld in Quebec, and that the monies protected in the trust does not make her lose her right for her social security payments. (And let me assure you, the monies are limited;and will be used to provide Sarah with the additional care that she will need when she is no longer living with my mother)

But to the government of Quebec? Sarah, who is 38 years old, is not entitled to any social assistance . She is living with my mother and therefore it is my mother’s obligation to provide for her. Sarah, has no rights as an adult.

Can I just also add how completely insulting, degrading and dehumanizing it has been for my sister to be consistently told that she has no right to her own money, as she is an obligation that my mother has to care for? Although disabled, can you perhaps think that she might have feelings and this is impacting her sense of self worth? (I won’t go into how health wise this has affected her, but you know how stress affects the body…) Can you imagine not being entitled to ANY money? When thousands of others are collecting social assistance for the very same reason, or for other reasons (and some of them questionable even).

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What is my purpose in writing this? It’s two fold really.

Firstly, I feel helpless. The only option is to go to court – which we will have to do eventually  – or for my mother to kick Sarah out onto the street. But why should this have to become a court case? Sarah clearly qualifies for the program that I, and so many of you are  paying for! Were these programs not created for us to help support the people in society – who for no fault of their own – can not take care of themselves?

We must stand up for those suffering with disabilities! We must ensure that they are not denied their basic rights! We must speak up for the Sarah’s in this world! Please spread the word, help Sarah get reinstated to the social assistance program, and protect others from the abusive behaviour of the Quebec government!

Secondly, and most importantly, my purpose in writing this is to let Sarah know that she is loved, she is valued and she is of infinite worth. And I would like you to tell her that too! I have opened up an email account at care4sarahd@gmail.com and a twitter account for Sarah – so please email or tweet her to show her your love! @care4sarahd

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Please pass this post along to help care for Sarah! We can make a difference!


Comments

My Disabled Sister is a Person Too, Even in Quebec — 53 Comments

  1. Having known your family almost since Sarah’s birth, I am right now–without exaggeration–wiping hot, angry tears from my eyes. Your entire family has always been honest, hard-working, generous, and kind. Not once did I ever see a molecule of extravagance or greed. You wanted for nothing, but everything you had was EARNED. If just one Quebec bureaucrat would listen with both ears and mind open, there would be no question as to how this matter should be settled. And why deprive your mom of Sarah’s cheerful company as a condition? Should any Canadian governmental entity be in the business of trading family for cash? This is utterly ridiculous and, quite frankly, embarrassing. I will be sending Sarah an email to let her know the truth: spending time visiting with her last Christmas in Montreal was one of the highlights of my trip home. Because of her health condition, she has remained as she always has been: spiritual, kind, sweet, funny, and childlike. Love to all the Davidson Family, and go get ’em!!

  2. Sarah you are so loved. You are one of my best friends. We have had so much fun joking and laughing when we are together. You (and your Mum) have always followed the rules and the fact that some government official has made such an inhuman, inccorrect decision that has taken away your rightful pension and your little bit of treasured independance is just unaccepted. I hope that Leah will mae sure this blog goes to your member of parliament provincially and federally as well as the premier to see if they can correct this inhuma decision.

    • Have reached out to members of parliament before and nothing. However, they have recently responded and said they would look into things.

  3. I was in young woman’s with Sarah over twenty years ago and she was such a kind soul. We went home to visit a few years ago and she is the same gentle sweet girl she was always been. Please tell her how wonderful she is. This is so incredibly sad and unjust that your widowed mother has to deal with this. I will pray for your family that this will all work itself out. Tell Sarah that i am thinking of her and not to let this break her gentle spirit. Your post is beautifully written. She is so blessed to have a sister like you.

  4. What a beautiful and heartfelt blog. How unjust and unfair and thank goodness sarah has a sister like you to spread the word on this terrible injustice

    The pics are so beautiful. Three nights ago i dreamt of sarah so vividly . Remind me to tell all upon my return. Will write sarah for sure next week when back

    Stay strong sarah! You are an amazing woman!

    Love tarina

  5. I was her home teacher when they lived in DDO … you couldn’t find a family with more love towards _everyone_!! Although I understand how the government can have the opinion that they do because most people do not have the same situation, I think that if they considered the arguments presented … how could they not agree that Sarah’s mother deserves the right to protect her.

  6. Sarah is a loving,kind, and happy person whom I felt privileged to know through our Church. Whatever would we do without her pure spirit? Sarah’s spirit was crucial to our enjoyment when pulling together during many assignments.

    I pray that someone in the Quebec government finally take on Sarah’s issue of being able to earn her own discretionary funds as well as receive assistance that is so deserved and necessary. When are people going to recognize how needed those funds are?

    Sarah, not only do we smile in our memories of fun times together, we stand in joy at your independence. You are a most kind and sweet person. Please also say hi to your Mom from Doug and myself. Your Mom is one of the nicest people we know. I miss our talks! Love to you Sarah.

    • I hope that Sarah’s story will help shed some light on the importance of this issue and pave a better way so others don’t have to suffer. Thanks for your love and support.

  7. Dear sweet Sarah. We all love and pray for you. I hope Heavenly Father smiles down on you and helps you ad much as He can. I can’t imagine how stressfully and scary everything much be at this time. You are in our prayers. We really do love you and hope things will turn out better then they have been. Love Rachel and John xoxoxo

  8. My heart goes out to Sarah and her family for the current trials facing them.
    I grew up with Sarah in my church congregation and I can only recall pleasant moments with her, always greeting me with a smile at the church doors and sincerely asking how I was. Please let Sarah know that I have always appreciated her sweet spirit!
    I have been working with people with special needs for about half a year now and it pains me to hear how the Quebec government is handling this issue. Surely people with special needs are entitled to their own rights and privileges! I stand firm in this belief. You will be in my prayers!
    – Derek Macpherson

  9. CBC has a program called ” Go Public”. Think it’s time Sarah’s story hit the big time. Please, look into this.bit might help.

  10. Glad you wrote it. It was hard for me to understand because my eyes glaze over about financial stuff, here in the US or abroad, but I really did follow along.
    The system is definitely failing you all.
    On a happy note, I totally support you all and I followed your sis on twitter!
    Tamara recently posted…How To Keep Your Cat Happy & Healthy.My Profile

    • I know it was a tough read. Just felt I needed to give the details to get the attention it needed. Thanks for sticking with it!

  11. I am the CEO at the food bank where Sarah volunteer. She is loved by all and her smile is contagious. You should see her dance when we have our annual Christmas party. I think like one of the comment said, its time to go public with the medias. I would also strongly suggest to contact the government representatives of your riding as they are usually very helping in this sort of thing. Let us know if there is anything we can do to help Sarah. West Island Assistance Fund

    • Thanks for your comment! I laughed out loud — Sarah LOVES to dance and is dancing away at every family event we have! Thanks to your wonderful organization for their support.

  12. It has been my pleasure to know Sarah since she was little…..she used to be in our Jr. Sunday School class @ Stake conferance….Sarah is an inspiration to everyone who knows her….and she is a wonderfull example of someone lettjng their light so shine. Sarah you are one of Heavenly Fathers chocest daughters….He loves you and so do I

  13. My heart goes out to u. Social Assistance is ridiculous. I have been going through a similar situation with a friend of mine. Ever since she started on assistance due to several health issues they have been trying to kick her off. She lives on her own with these health issues but they don’t consider that. She has currently been cut back to $707 per month or something like that. She can pay her rent and pay cable. That’s it. How can they expect someone to survive like that. I did contact an ombudsman on line and they have been very helpful. I would suggest u contact the ombudsman and get them on the case. Feel free to write me if u have any questions.

  14. It is regretable that the government acts in this manner. Sarah’s plight should be brought to the media’s attention for maximum exposure. Maybe there are other families in Montreal who have a similar experience.

  15. I am just SICK about this, Leah!! This is just so wrong!! I’m so so sorry you all have to endure such a horrible journey through the ‘law’ in having some financial stability for your precious sister. I can’t imagine the stress this has been on you and your mother…

    Sharing. Praying. There must be change!
    Chris Carter recently posted…Teachers…They Are InvaluableMy Profile

  16. Hi Sarah , you and mom are in my prayers . I cannot wait till we go for lunch in the next week or two . When we went to the Christmas service at Christ Church and heard you sing it was like an Angel and that is what you are not only to me but to God . You and mom are very special people and I enjoy our outings with Janice when we go for lunch . God Bless you are loved by so many . Bev. xoxo

  17. I am sorry to hear you are going through this. This is just awful and I hope things turn around for you and your family very soon, for the better. It is ridiculous that they are making you go through this unnecessary stress. I wish you all the very best.

  18. Pingback: Province cuts support for woman with cerebral palsy because mom set up trust fund - WNewsNetwork

  19. Pingback: Province cuts support for woman with cerebral palsy because mom set up trust fund - World News Line

  20. Pingback: Woman with cerebral palsy loses Quebec’s help because mom saved for her future | Lokalee - Trusted Reviews & Ratings On Your Local Business Directory - USA - Canada

  21. Pingback: Province cuts support for woman with cerebral palsy because mom set up trust fund | Lokalee - Trusted Reviews & Ratings On Your Local Business Directory - USA - Canada

  22. Fight this; fight this hard.

    Leah, I came across your story on CBC GoPublic. When I first saw that Sarah was penalised for setting up an absolute discretionary trust, I froze. It frightens me to think that my brother who, like Sarah, has disabilities that left him with little employability or self-sufficiency prospects, might one day find his assistance taken away in such a callous manner.

    What really got me furious though was seeing what they put your family through, especially your parents and the absolute disrespect of their dedication towards securing a decent life for Sarah. Every single one of those applications, appeals, audits, statements, assessments, and eventual refusals is such a stressful and mentally draining experience felt by the whole family, on top of an already healthcare-centered and worry-filled lifestyle.

    Being from Ontario, my mother and I are grateful to Leonard Henson and others who fought to establish the Henson Trust, allowing us to give my brother some sense of security and dignified independence if he ever ends up alone. Sarah’s plight will benefit other cases in Quebec, and set a precedence for generations to come. Best wishes to you, Sarah and everyone in your family.

  23. I have known Sarah and her family for many many years. Sarah is the sweetest and most gentle person that I know. I personally think that it is horrendous that our government will not give to those like Sarah who stand in need. How many people are receiving welfare just because they are lazy and don’t want to work. This just propogates generation after generation of people on the dole and all in the same family. Here is a beautiful and wonderful human being, Sarah, who is disabled, not lazy, but again I say disabled, and the government refuses to give her the money she needs to continue on and take care of her needs. Her mom won’t live forever, and Sarah will need assistance, and who is going to pay for that. Sarah needs help, and the government is refusing to give her that help just because she has a small trust fund. 14 years ago I was trying to find an English grade 6 for my son. Jonathan was diagnosed as dyslexic and doing grade 6 mostly in French was just not possible for him. Almost all of the totally English grade six programmes were phased out by a French grade 6. What was a mother to do. I cried a lot and prayed a lot. There were 2 English 6th grade programmes left, one in Lachine and one in Pierrefonds, and because we did not live in either city, my son was not allowed to attend. To some degree I understand what Sarah and her family are going through, yet one only truly understands once you have walked a mile in their shoes. I don’t understand our government and perhaps I never will. I ca only hope and pray thst the government will change their mind and truly help those disabled individuals, like Sarah who really need the help.

  24. Fight this!

    This is discriminatory on the basis of family status, her mother being her caregiver. Had she been living in a group home or in a home with a stranger, she would qualify.

    Forcing people into this absolutely dependent position is what governments do to spouses and dependent adult children in Ontario too … while a Henson trust is respected here in Ontario, other income and assets of others in a household is not … and this has led to family breakdown, even domestic violence in many cases … even in the most positive case scenario, as it sits with Sarah at the moment, this is a major blow to her self-esteem and her sense of independence.

    This is wrong at so many levels.

  25. The provincial support funding is meant to cover room and board only. It does not pay for caregivers, medical needs outside of the what is covered by provincial health care plans, transportation costs which can be extremely high for a person with a disability and other disability related expenses. By refusing to allow people of have a discretionary trust fund that would cover such costs, the province is effectively denying these individuals, the disability related treatments and services that they require to live. Having a roof over your head and food to eat is only part of what it costs to live with a disability. Quality of life and health issues are being denied by such cruel legislation.

  26. Not sure why opening a trust for a loved one who is getting disability support is not allowed? The government does how ever allow you to open a RDSP ( registered disability savings plan) with out penalty to your benefits.

  27. The CBC has a feature called ” Go Public”. and has often broadcasted similar stories of government mistreatment…
    Would that be something that might help? Certainly check with your lawyer first as some time the government departments go ballistic when you go public and refuse to discuss or consider you case further…
    God Bless you in your righteous endeavours, We trust there will be a just solution

  28. I am so sorry to hear of these developments, this is shameful for the Province of Quebec to act so unkindly, yet it is quite clear the amount of abuses that exist within Canada where funds for real situations are abused by individuals who are capable.
    I hope this gets a lot of attention and a reversal of the decisions to this point and the monies are attained that she lost,

    Sincerely

    Love from both my wife Helena and myself Ed Goldthorp

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