The more I think about guardianship and what it entails, the more enraged I become. Part of my frustration is that the safeguards that are in place to protect people with disabilities from losing their independence and autonomy ironically discriminate against those who are on the profound end of the disability spectrum. One commenter disputed my view by stating that “Disabled people have the same human rights as non-disabled people, so it makes sense that their rights (autonomous decision-making authority) is the standard. If she does not have the capacity to make decisions for herself, you should have to prove that before being granted authority over another person’s life.”
They are correct. It has never crossed my mind that Meredith’s rights are any different than my own. We have proven ourselves and our ability to care for her at home for the last 22 years defending her rights and advocating for her every step of the way. Not only do we have people in our home almost 20 hours/ day but we also have eyes on us through care coordinators who make home visits every 60 days as well as the many other professionals involved in our lives. Therein lies the problem.
Some facts: The life expectancy of babies, like Meredith, with severe brain damage at birth caused by severe Hypoxic-Ischemic Encephalopathy (HIE), is significantly reduced. Studies indicate 20% to 50% of these infants may not survive the first week or early childhood. Those who survive often face long-term, profound disabilities requiring intensive, lifelong care. If you have not cared for someone with medical complexity, it is difficult to comprehend the intensity of care that is required. When I reflect on this last two decades, I am very aware of the tremendous responsibility that was bestowed upon us when we walked out of the children’s hospital in 2004 with our extremely fragile infant. I reflect on the thousands of small “t” traumas, the big “T” traumas, the breathtaking moments, the millions of decisions, the troubleshooting and brainstorming and everything else that we encountered in the first eighteen years alone and that continue into adulthood. It’s a funny thing with our complex kiddos……the turning of a calendar page does not miraculously change our circumstances.
When it comes to medical fragility, parents like us are dealing with a shit tonne more than disability (the umbrella term for physical, mental, cognitive or sensory impairments that interact with environmental barriers to hinder full participation in society).
Meredith’s diagnosis of life-limiting cerebral palsy is the least of our worries. Her medical fragility made it impossible for her to access or participate in treatments/ therapies that could have potentially benefited her. She could not attend school due to the precise care she requires. She is only alive today because we kept her home and have dedicated our own lives to keeping her alive and well. That and a whole lot of random luck.
We have been told by onlookers that Meredith has surpassed her life expectancy by almost 15 years because of our deep and abiding love and the care we have provided to her. It’s a lovely sentiment but we are wise to the fact that other mothers and fathers who loved their children just as fiercely had to witness their dying. No amount of love can compete with this reality of medical fragility and complexity.
Twenty-two years in and our entire existence continues to revolve around her and how we can best care for her. I gave up my career, working sporadically over the years, to be home and manage what we lovingly refer to as Meredith Inc. We cannot travel far and have only been away for three nights in a row a handful of times in the last 2+ decades. Our home is not our own. Meredith requires round-the-clock care and so we are grateful to DSW’s and nurses who help us in caring for all of Meredith’s needs. The trade off is our privacy. 
I share these small details not to complain or to receive accolades but instead to illustrate the asinine request that we now are expected to apply for guardianship to prove our worthiness and capabilities of caring for Meredith and speaking on her behalf so she can access benefits that she is entitled to. We have a proven and unblemished track record of providing exceptional care to her. I would like to say we would give our lives for her but that would be a lie. I am terrified of dying before her but I digress. We have willingly, without question, sacrificed whatever it has taken to ensure her well being. When we became her parents, we stepped up to this extraordinary experience of parenting without hesitation; an experience that our minds could have never imagined or fathomed.
I am not in a position to compare our experience with what other families deal with. I can only speak/ write through the lens of our lived experience. My argument is that there is more than sufficient evidence that we have been taking care of Meredith for 22 years and should not be forced, due to a flawed system, to spend thousands of dollars applying to the Supreme Court to be granted Guardianship. There needs to be another option between POA and Guardianship. It isn’t all about the exorbitant cost and the year it can take to complete this quest, it is the principle of it. I am very aware that for A LOT of parents, this fee for guardianship would be impossible to provide. I guarantee that the thought of having to seek guardianship when your medically complex child turns 18 and not having the funds to do so is what nightmares are made of for parents like us.
I recently sat in on a timely webinar on Alternatives to Guardianship offered by Partners for Planning (P4P). Again, our unique situation was not addressed. You see, many of the children in my small community of extraordinary and complex medical needs are living much longer than ever expected due to medical advancements. Had Meredith been born 35 years ago, she likely wouldn’t have survived the first 48 hours. The problem is the “system” has not kept up to make accommodations and consider this population.
The final message in the webinar was that Guardianship is not recommended except in extreme and rare circumstances and that for those of us whose adult children cannot make a POA? We are better off going without the benefits and consequently struggling with the CRA website and requirements than to seek Guardianship. The presenter stated that it makes no sense to spend thousands of dollars to apply for Guardianship to receive the $200/month Canada Disability Benefit, for example. Again, seriously? I can’t be the only one who sees how completely insane this is.
Countless parents, who are in a similar situation to us, posted in the chat of the webinar and quickly validated that we are not alone. There are many of us who have fallen through the gaping crack and going without those benefits to avoid Guardianship. Yes, parents have gotten very creative to find workarounds or to be forced to commit fraud. I had a representative from Service Ontario tell me to place my hand over Meredith’s and sign her name on the Medical Exemption Form and fill it out as though she was filling it out. I refused because workarounds, although helpful in the moment, are just a Band Aid. I think it is time that we rip off the “proverbial” Band-Aids that are barely holding the system together and get to the root. There needs to be an overhaul and more solutions to address specific and extraordinary circumstances.
Brendon Pooran (founder of PooranLaw as well as the founding director of Partners for Planning) has requested a phone call after I sent them an email with my concerns. Hopefully, they can shed some light on this. I will report back to everyone who is following along after that meeting.
Please leave a comment and share widely.
The more ‘noise’ we make the more likely change will happen.
This is nuts! I’m so glad you are being vocal about this and insisting change. Thank you for sharing your stories Julie.
Thanks, Jenna!! It is totally insane and I am hearing all kinds of stories that reflect this reality for parents in Ontario. Can you imagine having people involved in your neurotypical/ healthy chidren’s upbringing and then being told you need to essentially BUY and LEGALLY prove you can parent them? It’s such an insult and triggering a lot of old trauma.
Julie ,
Thank you for standing up for what is right.
Our situation isn’t as complex here , however your voice and the voice of all of us can be the difference needed to assist our kiddos:)
Yes!! All of voices are needed and valuable regardless of where we land.
I am so glad to have seen your post. I thought I was the only one feeling this way. I am currently in the process of applying for guardianship of property for my son who is 21. I have had the same experience with webinars from P4P as well. And I have gotten the same feelings from trying to figure this out before my son turned 18. Everyone said you don’t really need guardianship. But we do, we are trying to go about it all the legal way. It should have been streamlined before he turned 18, the way DSo funds and ODSP was initiated. It seems no one really knows how to go about it, and now we have to figure it all out, more work, more stress for us.
Yes…..the lack of guidance and the plethora of misinformation is so stressful and just “one more thing” to deal with. I suspect there are a whole lot of parents dealing with similar anxiety. Survived transition only to be hit with another massive hurdle to climb over.
Thank you for sharing! As our daughter gets closer to 18, and knowing that POAs don’t/won’t work for us either – and so many other families are in the same position. How has this not been addressed yet?! Would the ombudsman be helpful?
Part of the issue is parents are getting creative in workarounds AND complex kids are living into adulthood which in the past they likely would not have. This has meant a lack of dealing with the core issue. I think, like so many issues, the parents are exhausted and have fought so hard for so long that they just bite the bullet. Thankfully, I am in postmenopause and have a whole lot of rage needing a healthy place to be metabolized 🙂 The Ombudsman is a good idea. Presently, our MPP’s office is bringing my concerns to the Minister of the Attorney General. We’ll see what happens first.
I am hearing more and more stories just like this in the autism parent community. Just this week, a mother was telling me of her fight with Service Ontario over renewing the health card of her non verbal child. There was a specific piece of information that they wanted to “hear” the child say himself and would not accept him using his AAC device.
There are so many hurdles for our children just in daily life and we fight alongside and for our children. At some point, common sense should override “the rules”, therefore lessening the fight to just move forward.
Yes….the questions that came up during that recent webinar illustrated a whole lot of people dealing with similar obstacles particularly with the with the CRA. I am so frustrated with the stupidity of rules that make zero sense.
I am happy to see that you as a parent of an 18 year old with complex needs are fighting this battle for guardianship, and the battle to pay fees that many can’t afford. Being parents of a 52 year old daughter, we fought that battle about maybe 20 years ago . We were told to settle for “Supported Decision Making” instead of going for “Legal Guardianship…. Which at that time was about $3500. But, we were witnessing what was happening to a mother who was maybe in her late 50’s, who was on welfare and her son, living in a DS Agency Home, she was listed as his trustee but, when her son fell , fractured his back, she was told she had no, decision making authority because she wasn’t his “legal guardian” I supported her by helping her fight the battle of having no legal rights, she wasn’t his trustee because, she was told he was over 21 years old and the DS Agency had “Supported Decision Making” authority … this is when my husband and I and our son became “Legal Guardians” .. We realize many families can’t afford this but, it is important that families have this knowledge . As most parents who have raised our kids with a developmental disability and in some cases, complex medical needs and speak for them and assume we can do that after 21 years old but, it’s when medical or legal problem arise, that’s when we find out, that becoming legal guardians is not automatic.
I am questioning the advice given in that webinar to avoid guardianship unless absolutely necessary. I feel that, if one can afford it, it is the only protection in keeping your adult child under your care when they are unable to do so. It causes me tremendous anxiety when I hear stories of parents rights being threatened or the decision making being in the hands of a group home and not the parents. There needs to be a better, more efficient process where parents are empowered and do not lose the ability to speak on behalfo their most vulnerable adult children.
My husband and I have cared for our two severely disabled boys for 30 years. We love our boys more than anything in the world. They have given us a world that we would have never otherwise experienced, one where there is innocence, and the simple joy of living one day at a time. There have been many struggles, with their health, the education system, the government and ignorant people. There has also been the gift of wonderful people who we would have never met had it not been for the boys. I have never regretted giving up my legal career to care and advocate for them. I am their voice. They do not speak. They cannot read. They do not understand danger. No one would ever consider them “competent” enough to complete government forms for funding. But the law says that I must have them declared incompetent and apply for guardianship if I am to have any standing when it comes to their rights with the government. It doesn’t matter that we have dedicated our lives to their care and have done so lovingly for 30 years.
Thank you for sharing your story! And thast is the point, isn’t it? It SHOULD matter that we have dedicated our lives to loving and caring for our mostr vulnerable family members. It is disrespectful and insulting and the system needs to be questioned and challenged.
I feel so incredibly lost in all of this. My son will be 18 on January and he is verbal and can understand when explained things to an extent. He can print his name but cannot read. He’s definitely in between the two. I feel guardianship will take all of his rights away and although I can explain things to him for him to understand others are making it sound like it should be the guardianship route. So incredibly lost. Where is the in between 😭
Hi, Megan…….Stay in touch and hopefully there will be something that comes out of this. Meredith is 22 and this is the first time I have run into these issues. If you don’t already have a joint bank account with your son, do that before he turns 18. You can become the Trustee of his ODSP and Passport which will be deposited into your joint account. You are automatically hus Substitue Decision Maker for Personal Care if he does not have a POA. Is it possible he could be deemed capable of making a POA? Hang in there. We mustn’t let fear take over.
Thanks for this Julie. I am feeling the strength of your “menopausal rage” and, on this side of the adulthood cliff, I would like to be part of the change. I agree 100% with you that there needs to be something between POA and guardianship and that the workarounds that most exhausted families have (un)successfully found are unacceptable and discriminatory. Our children absolutely deserve to be protected. Healthcare, technology and supports have advanced dramatically in the past couple of decades but the broken system has not prepared for medically complex ADULTS. I am several steps behind you, but reading your post and the various comments I wonder if there were more of us pushing the powers that be like you are currently doing, would it help propel your ripple? Would you feel comfortable sharing who you wrote to, the language you used? We could maybe come up with a sort of ‘action plan’: templates, addresses to share in the community to amplify the voices. We are few and far between, but when we work together it might help lawmakers recognize that this gap needs to be tended to… our complex kiddos are living longer and it’s just going to widen.
Yes, Andrea!! I think there are several issues and have heard from a lot of parents. My focus spoecifically is on the smaller group of medically complex kids who, unexpectedly, arrived into the ADULT world where the system is unprepared for them. I think there needs to be a spotlight shone on the rxtraordinary care and lives of families like ours. There are fights happening across the board and I am hearing from a lot of parents. There are issues with parental rights once adult kids move into a group home setting. There is the fact that parents are finding “creatiove workarounds” and ultimately commiting fraud. I am not prepared to that and will instead stand my ground. I agree there will need to be some mobilizing and I plan to do that. Right now I am gathering information and setting up some meetings to have a better understanding as to the gaps.
Wow, Julie & Tim what courage and resilience. You are admiral people/parents.
Murray
Thank you! We will do anything for our girl. XO
Hi Julie, we did obtain Legal Guardianship for our son as he lacks the mental capacity to assign us POA. We used TBH Legal Services, the cost was under $2500 & took about 4 months.
I felt the same way when we were deciding what to do…we’ve cared for our son all his life and have the track record to proof we know what is best.
However, the problems also lies in what happens to his finances when we are not around anymore. Do we want the government to step in, thats a hard no. For example, with legal guardianship already in place, if I pass first, my husband can add our daughter as a new guardian. If nothing was in place, the government takes control of all his finances.
Is this a perfect system when we’ve been handling everything all along? Nope. But it is protection for your child for the future.
In my opinion, having gone through the Guardianship process, I feel there should be a simplified route for parents who’ve always cared for their child. Unfortunately, we are lumped in with all the very unique situations some of which are trying to get their hands of an incapable persons finances.
Hi, Kelly! I assume you got Guardian of Property only. Guardianship of personal care (when a POA for Personal Care cannot be made by the adult child), almost always requires a more expensive, court-ordered process. Did you apply to the Supreme Court? I am already the Trustee of Meredith’s ODSP and Pasport funding. That is the extent of her finances. It is the fact that I cannot apply for the Canada Disability Benefit without there being a POA (the term used by the CRA website) nor could I renew her health card recently or apply for the Canadian Dental Benefit on her behalf. This is the problem. In order to do so, we would need to apply for legal guardianship which would cost aorund $10000 plus take a year in the courts.
We got Guardianship of property only. Guardianship of personal care is not required as personal care follows kinship in Ontario. We are his first point of contact for any decisions required for health then followed by siblings, etc. No need for Guardianship of personal care.
We dealt with the Ontario Office of the Public Guardian and Turstee not the Supreme Court.
Guardianship for property can be required for many things, renewal of health card, Ontario photo ID card and even accessible parking permit.
Most of our adult child’s finances can be handled by parents as trustee or Substitute Decision Maker. But the question remains, what happens when you are not here, who is going to take over.
We don’t want the government stepping in.
Take a look at TBH Legal website for information on the route we took. They were incredible to work with, not as expensive or time consuming.
Again, it’s not fair as trustworthy parents but it is protection.
I appreciate this and TBH reached out to me. I am hoping to have a conversation with them. Our daughter is followed by a palliative care team and so we expect we will outlive her. If we were to die suddenly, I need to have a plan for that.
I am going through the same thing! My child is almost 16 and we are gearing up for the transition to adulthood. If you need strength in numbers count me in!
Yes, strength in numbers. I am rallying the troops! An important thing to do now if you haven’t already is to open a joint bank account in your and your child’s name NOW before they reach adulthood.
I too experienced this. We were fortunate to be able to afford Guardianship however it was a significant amount of money. I asked the lawyer the same question. He is my baby, I have looked after him since birth so why should I pay to have a judge confirm I can continue to look after him. It’s isn’t just for a $200 benefit from the government. It is to permit decision making in a variety of circumstances. It’s fine if everyone knows your family in a small town but once you step outside that circle, your ability to make decisions is not guaranteed.
Yes, I appreciate that and that is a problem to me. I understand how it is and it is absolutely unacceptable. Ontario is far behind other provinces with this “all or nothing” system.
What a broken system! I’m sorry for what you and Tim have to navigate while looking for nothing more than to protect Meredith’s best interests.
Exactly. It feels insulting and so disrespectful for all the years of care and protection.