The Preventable Freefall

“Sometimes a pessimist is only an optimist with extra information.”

– Ralph Waldo Emerson

**Be forewarned, this is a bit of an incoherent ramble of an update.

Where to begin?

Since I posted about our frustrations with the constant request for proof that Meredith have a POA (if you are new, please read THIS, THIS and then THIS before proceeding), we have inadvertently emerged from beneath a rock that we have happily inhabited since surviving Meredith’s transition into adulthood 4 ½ years ago.

I have heard from countless folks who have provided information, offered advice and shared some horrific stories of abuse of a system that is ill-equipped and in desperate need of an overhaul. It has been overwhelming, heart-breaking, breath-taking and frankly, infuriating. It would be easier for us to do the things that we think are best for our situation and slip back under our rock however, I am hellbent to learn more, to rally the troops, so to speak, and to see what can be done to create some sort of navigation tool so that we are not all wandering around, bumping into barriers and feeling confused by so much conflicting information.

When this request for POA came up over and over again, I was certain I must be missing something. Instead, my eyes were opened to the massive oversights and obstacles in place that make it impossible for people with intellectual disability and medical fragility to access the benefits and services they are entitled to. These limitations and barriers inhibit our ability to continue the care that we have provided for 18 years once once our children transition to adulthood. Initially, I assumed there were cracks that people were falling through but now realize it is more like a free fall off a cliff that has been constructed by a system held together by bandages.

After sending an email to Pooran Law (many of you recommended them), Brendon Pooran and James Noronha requested a phone call which took place this week. We chatted for 30 minutes about the holes in the system and about the advocacy work he and his firm have been doing for 20 years. I don’t know if it is my chronic exhaustion or my post menopausal brain but something happens to my attention span and ability to retain information once legal and political jargon get tossed around in a conversation. What I did come out of that call with was the fact that Ontario is lagging far behind in its legislation compared to other provinces. Federal benefit programs leave it up to the provinces to delegate how these benefits are accessed essentially.

Mr. Pooran suggested I look up the Representation Agreement that is an option in British Columbia, for example. At first, I thought it was the “in-between-a-POA-and-Legal-Guardianship” solution I was seeking, however, after reading more about it, I quickly realized that again, it may be a solution for A LOT of Ontario families but not for ours. The minimal level of capacity required to make a Representation Agreement is still too much capacity required for our situation. So, even if the powers that be can bring this option to Ontario, our family and other families like ours are l back to square 1 although it would be, as I said, a worthy option for many families. I was grateful to have the conversation, and Mr. Pooran has offered to keep me abreast as to any developments/ progress being made in that regard.

I also received a lovely message from Rachel Merucci, Licensed Paralegal, of TBH Legal. I received many comments and messages that Rachel may be another great contact. We have yet to meet outside of email but she has provided some excellent ideas and resources in the meantime that my husband I am are looking into. Once Rachel and I sit down together, I will add her recommendations to a blog post that I am working on to offer some sort of map to follow.

My mind is swirling with thoughts, ideas and reflections; so much so, that my dreams are being infiltrated by fearful scenarios that come with caring for a vulnerable family member.

I have made some realizations over this last couple of weeks. First off, I know that I am not speaking about anything new and am merely joining a battle that mothers and fathers have been fighting for decades. I also recognize that there are grassroots organizations and groups that exist as a way of facing these barriers together as opposed to fighting this uphill battle individually. Second, this is a complex issue and affects families differently. I imagine creating one of those decision trees where you choose Yes or No and then follow the path that is pertinent to your situation: “Is your child considered medically complex? Yes? Proceed to Track 3. No? Continue on Track 2. Just a simple and straightforward path so that it can at least reduce some of the anxiety that plagues parents in the three years even before their kids turn 18. It could also be a useful tool for the government workers who insist on requesting proof of POA when they obviously lack education and understanding as to what a POA is. Sadly, there isn’t a straightforward path…… yet.

The fact that the Attorney General, MP’s and lawyers are meeting in boardrooms behind closed doors without the voices of parents and those adults living with disability at the table, doesn’t sit right with me. I did ask Mr. Pooran if, perhaps, parents could be contributing somehow to his efforts, but I did not receive a clear answer.

If you missed the timely Globe and Mail opinion piece by Max Shilleto (Vancouver lawyer) published yesterday called, “When a child with intellectual disabilities becomes an adult, the financial system can fail them”, I strongly recommend you subscribe to the Globe and Mail just to read it. “The article addresses the significant challenges faced by families of young adults with intellectual disabilities as they navigate the transition into adulthood. Max examines the limitations of current provincial capacity laws, which often treat individuals as either fully capable or fully incapable.”

“The true measure of any society can be found in how it treats its most vulnerable members”

~ Mahatma Gandhi

This isn’t a cut and dry/ black or white issue. There are MANY layers and circumstances but perhaps really listening and understanding the unique experiences of all families to create a system that has more than two options is a good starting point. Instead of making assumptions, cutting corners and making decisions behind closed doors, we might meet people where they are and see what solutions can be found when people work together creatively and respectfully. And the burden of educating government employees on the differences and legalities around POA’s, Substitute Decision Makers, Guardianship of Person and Guardianship of Property, etc. should not be left to parents to provide at the counter of Service Ontario when a parent is attempting to renew their adult child’s healthcard. A pre-requisite to being a public servant must include education on these topics. As a death preparation educator/ facilitator and someone with lived experience, I’d be happy to contribute to the development of said education.

While I am hopeful things can change, I also know that hope is not a plan.

 

***Stay tuned for more updates as I continue to explore, have conversations and find solid answers to help us give the best care to our most vulnerable beloveds.