I’ve written a lot about my experiences in disability supports as a caregiver. I’m also a disability self-advocate. At very young age, I was diagnosed with dyslexia. I wasn’t very good at academics until I was able to tap into a bit of a super power in my last year of high school. I have a near photographic memory. I ended up a strait A student after I figured out how to use it properly. It’s served me well in post secondary training as a journalist, and later as a systems analyst, but it comes with a cost. As much as I remember the good in life, the bad is just as crystal clear. The way I’ve dealt with this in my adult life is to take the bad and turn it into a positive memory by making a positive influence on other people as a result of my experiences, and for over a decade in policy and advocacy.
One of the most positive things I’ve seen happen over the course over this past year, is that this blog has assisted with getting the disabled in Ontario and across the country energized to speak up about their rights as individuals that are living under a very repressive system of supports. I’ve seen a major upraise in disability self advocates in this country who have raised their voices above the stakeholders who often take advantage of disability movements to push forward their own agenda. I’ve witnessed the raw emotion through social media of people who are on disability supports, pleading and begging for more money just to have the privilege to eat a healthy meal. I’ve also seen the province respond to that with an app for mental health. I hope what you read here today will help raise that voice to another level, and to help you advocate to effect meaningful and sustainable change in the way the system of supports treats you as a person with disability or a loved one that is effected by a disability.
I’ve been a very strong advocate for government to listen directly to the voices of the disabled and their families. There have been times where I’ve received a lot of press attention regarding our family situation, only to redirect that attention towards community members, and ensuring that the voices of the disabled and families take precedent. This post isn’t to meant to bring attention to me or my family (however I will be referencing some of our experiences throughout this post) it’s to assist each and everyone of you in your advocacy for yourself or your family. I would also hope that policy makers take this post seriously.
As a systems analyst, users of any complex system are the ones to identify – and be effected greatly by – significant problems within that system. The first step in the systems analysis process is to interview the users. The first step in solving a problem, is recognizing there is one. The administrators or policy makers are usually pretty clueless when it comes significant problems in the disability support system, and rather than listening to the users of the system (to which I find discriminatory) law makers rely on stakeholders who have a financial stake in system to educate them on what needs to change. What this has created in Ontario is a system that is adversarial, unaccountable, unsustainable, inequitable, dangerous and discriminating towards people with disabilities.
Billions of tax payers dollars are being provided to non-governmental agencies (NGOs) tasked with providing support for the disabled, and not enough of this money is reaching the front lines and the people that need it. I’ve heard from many employees of these NGOs over the years who compare it too an orgy hierarchy. It’s all about who you know, or who you sleep with in order to advance careers in these NGOs. This has created a lack of accountability to those who provide support through these agencies and who are on the front lines. There’s little deterrence for employees who treat clients with disrespect, discrimination or even abuse.
Problem #1 Equitable Supports:
The dirty little secret within disability supports is that gatekeepers to that support will put up walls, or most commonly omit support options you qualify for, unless you start raising your voice and causing problems. In our experience, it wasn’t until I started causing problems for these gatekeepers regarding accommodation of our family (and this took several years of being a pain in the ass) that funding we had qualified for – that we were not told about for years – became available to us. NGOs receive transfer payments from the province that are discretionary. Meaning that NGOs decide who gets what support and how much with those transfer payments. Qualifying for these funds is often not based on the needs of the client, but rather who is a bigger pain in the ass. These NGOs would rather put the money towards their overhead and other expenses rather than put the money towards supporting individuals with disabilities that need it. Getting them to release that money for supports is like pulling out teeth. You must fight tooth and nail for supports, and the system banks on exhausted families or individuals with disabilities to go away, rather than pick a fight. This is illegal and it’s a form of discrimination.
Equitable Supports Solution
The province needs to end discretionary benefits or change the way they are provided by the NGOs. The way this support currently is offered is not inline with the Ontario Human Rights Code, nor in line with international human rights law. Transfer payments should be administered on a per client basis, and qualification for these benefits determined by a clinician chosen by the client, not by the NGOs.
How to Advocate for Equitable Supports
If you feel that you or someone in your care is not getting the proper support to accommodate the needs of the disability, and/or if you require assistance in daily living that isn’t being properly provided to you, the first step is to approach your case manager in writing, outlining your concerns. If you speak with them on the phone about this, record the phone call. Try to get a written response if possible. If you feel you are getting the run about, please contact ARCH Disability Law (which provides free legal advice and/or representation to people with disabilities) who maybe able to assist you or point you in the right direction.
Problem #2 Agency Accountability
This is my biggest gripe within the system of supports. Those to whom are on disability benefits of any kind are regularly audited forensically. This means that those who are on ODSP/Passport ACSD/SSAH often have to cough up a year’s worth of bank records, and provide receipts. The NGO’s tasked with providing support in the system are not audited in the same way. These NGOs are not expected to provide receipts for their own expenses, and detailed explanations on the purchase of every staple, pen, or lunch they bill out as an expense.
Outside of the differences in monetary audits, policy and legal compliance is self regulated. In York Region we have one NGO (York Support Services) tasked with ensuring policy and compliance of another NGO (Developmental Services of Ontario). Compliance audits should be done specifically by the ministry overseeing these agencies. These agencies should not be auditing themselves for policy and legal compliance especially when dealing with vulnerable clients. This should be totally and completely unacceptable to law makers and the public at large.
When dealing with staff complaints, formal complaints procedures against staff at these agencies require the agency to hire an “independent” investigator tasked with investigating these complaints. The way these formal investigations are set up, are meant to be a deterrent for lodging a complaint against staff in the first place. A formal investigation will often include interviews conducted by a hired lawyer these NGOs task with investigating a complaint. For a family or an individual dealing with a disability, having to be interviewed by a hired lawyer is intimidating, and discriminating against what most families impacted by a disability already have to deal with.
These investigations often lean on the side of the employee rather than the client. Often these investigations come down to hearsay because vulnerable clients haven’t collected direct evidence or facts needed to resolve these complaints, and rather than the customer knows best policy, the client is often the one responsible for proving a complaint has merit.
Agency Accountability Solutions
Policy needs to reflect law. It is discriminating to subject those who are in receipt of support to forensic audits on a monthly/yearly basis, and not these agencies tasked with providing supports. The reason why the government will not forensically audit these agencies the way they do to clients is because forensic audits of organizations cost a lot of money. It’s cheaper to audit the end user of the system, than it is these organizations. That mindset needs to change and is against the charter rights of individuals receiving supports.
The Ministry of Community and Social Services should be tasked with compliance audits of NGOs. These agencies should not be self-policing themselves, especially when dealing with a vulnerable population. There should be strict independent oversight when it comes to compliance with law and legislation. The people overseeing compliance with respect to law/policy and funds should be accountable to the taxpayer and the public, not to themselves.
For the protection of vulnerable clients, any point of contact with NGO employees should be voice recorded and subjected to quality control for policy, ethical, and legal compliance of staff.
How to Advocate Around Agency Accountability
I used to work in finance. I worked in a call centre, and later in investigations for some of the major financial institutions in Canada and the US. When we were representing any of these financial institutions toward their clients we were recorded to ensure compliance with law, and the banks policy on customer service. Had we breathed on the client the wrong way, we were fired on the spot, no questions. Pack your desk up, and find another job. Until that becomes a reality in a sector that deals with vulnerable populations, I’d recommend discreetly voice recording all contact you have any agency staff, and yes that’s legal. In Canada only one person needs to be aware of the recording. This is to protect you. It is your right to collect evidence to protect yourself and your family especially given the lack of accountability on staff in the system right now.
No matter how nice the person you’re dealing with is, everything that you say to them will end up in your records. Keep that in mind when you speak with anyone from any NGO’s that are providing you support. You have the right to request records to see what agency staff have written in them about you or your loved one. I would strongly recommend that if you are currently dealing with any NGO – or the Ministry for that matter – that you request your records. Information is power. You learn a lot from your records. It’ll help tremendously in your advocacy efforts.
On a personal level, we ended up with a case manager for my son who got too close to me. She treated me as a good friend rather than a client. She crossed an ethical line. As a caregiver of two disabled individuals, I’m vulnerable, often exhausted, and stressed. I have a lot of responsibility on my back, not to mention the horrid task of dealing with this broken system to ensure my family is properly supported. After a few years of being in her care she started to become very unprofessional and flirtatious with me in front of my wife.
Rather than adhering to her professional code of ethics and removing herself from this family’s care, she started to play on my vulnerabilities to get even closer to me. It got to a point where she pushed me over the edge, became obsessive with communications towards me, wouldn’t leave me alone after several written requests to do so, and I didn’t know how to deal with it properly because of the rapport I had with her. I made an inappropriate comment to her thinking she would just leave me alone a vacate after that. As a result of the rapport I had developed with her, I didn’t want to get her into trouble. She reported the comment to her bosses, and advocated to stay on with our family regardless. All of which is recorded in detail in my son’s records. Her employer agreed with her and kept her on, regardless of clear ethical lines that were crossed on both sides. It took me to bluntly request in writing that she be removed from my family’s care and then she finally left. It shouldn’t have been my responsibility at all to do that. It’s not my job as a caregiver to provide quality control of employees tasked with supporting vulnerable families, and I’m not the one with an expectation or requirement to uphold a professional code of ethics.
This situation caused significant damage to me, my marriage and threw me into a full-blown mental health crisis in the middle of the pandemic. Then she kicked me on the way out with a complaint into Children’s Aid because I asked for a break in services during COVID (all recorded in our records with this agency), and after I sought the Ministry’s protection to accommodate a break in services. This lady was than exonerated upon a formal complaint of any wrongdoing and latterly moved to a different agency where she still is dealing with vulnerable families. We’ve since moved down a tier of support because of this situation, and the lack of trust I have with this NGO to appropriately deal with employee concerns, ethical guidelines and policy adherence as a result of how they handled this situation. Written requests to be moved to a different agency were denied twice by this NGO. I had to threaten a lawsuit and get the Ministry involved before they complied.
The lesson I took away from this, is that anyone you deal with in disability supports, you keep at an arms length, and that adherence to ethical and professional codes of conduct are not actively audited or enforced by these agencies, and not just in my case. This is one of many stories throughout the disability community of agency staff acting unprofessionally and unethically some a hell of a lot more serious than a flirtatious case manager. Kinark being one of the main NGOs of concern regarding adherence to ethical standards of practice, and providing misinformation to families about qualified supports. Families of autistic children, and clinicians have voiced their concerns several times to lawmakers about this agency. The province in the past has had to step in because of Kinark’s mismanagement and ballooning budgets. Until there’s quality control on staff from these NGOs that deal with vulnerable populations, you record everything to protect yourself and those under your care without question or apology.
Problem # 3 Advocating For Change
Your voice matters, and it’s important. Whether you’re a caregiver or self advocate, providing your own lived experiences to law makers and the public makes a difference. Advocacy can take many years, but eventually you break through. In the past I’ve successfully advocated for consumer protections, digital and human rights, Ombudsman oversight of our school boards (because trustees don’t seem to understand what their job is), and of course for my family and others in similar circumstances.
Political advocacy takes persistence, patience, and telling your own story a thousand times, and then a thousand times more after an election and change of government until you end up with a law maker who will actually listen to you rather than judge what your motives are. Politicians deal with an abundance of people who lobby them, and most to be frank aren’t all that bright. However, lessons can be learned on how to properly advocate your voice to your MP or MPP.
How to Advocate for Change
When advocating, it’s important to advocate and tell your own personal story and what YOU would like to see change. The wrong thing to do, is to go up to politicians with prescripted responses written by some advocacy or lobby group. It’s got to come from you, your personal experiences and you alone.
When you are dealing with political advocacy, stakeholders will often try and influence an emerging movement and use it to their advantage to push their own political objectives. Often when this happens it’s meant to divide and dilute your voice and your experiences in order for the voice of these stakeholders and their objectives become a consensus among the movement, and effect the course and speed of change. Some cloak this as building a more powerful voice for the movement, when in fact it’s quite the opposite that happens. There are billions invested in disability supports in Ontario, and a lot of stakeholders who have financial interests in the system will do what they can to effect change to protect their own interests. If they are not users of the system, they don’t know what the problems are. You do. This is very common place in political advocacy especially when dealing with a lot of money and with any threat of stakeholder accountability.
Lessons for what to do and what not to do can be learned through the way the autism community handled this advocacy. In 2016, it was ONTABA (the lobby group for the “behaviour analysts”) and the education unions that infiltrated the movement in the autism community.
This divided the community and pit parents with common interests and voices against each other. As someone with a successful political advocacy background I tried warning parents who were using prescripted responses, and photo ops with politicians to be-careful only to later be personally attacked by ONTABA members through social media as my fellow parents provided the voice of stakeholders in their political meetings with law makers rather than their own lived experiences. Quite a few ONTABA members came very close to the legal definition of defamation when replying to me through social media.
This is the biggest roadblock to seeing meaningful change to the system of supports. Politicians need to hear from you. Not ONTABA, not any lobby group, not any advocacy organization claiming to represent people with disabilities or through their questionnaires. They need to hear directly from YOU. You are the best advocate for your situation, yourself or your family. You don’t need to be an expert in politics or political advocacy, you’re the expert on yourself, your family and your lived experiences. Nobody else is. Don’t let anyone filter that voice. Your lived experiences through this broken system of supports needs to be heard above the noise stakeholders create to affect the outcome of change. If you let stakeholders dictate what you say when you’re advocating, than meaningful, and sustainable change which is desperately needed in the way we support our disabled will never come.
Your voice is more powerful when speaking directly to your MP or MPP or the media about your own lived experiences than stakeholders. Therefore, stakeholders will do their best to muddy the waters, confuse you and divide. Change is hard, especially when speaking about changing the way billions of tax dollars are spent and allocated.
The only time I saw change happen in the autism movement is when parents confronted media, MPPs and spoke not just from the heart, but about their own lived experiences. It was raw emotion. It wasn’t just media, but the entire province that was behind this movement when that happened.
I’ve heard a lot from the more wider disability community that the autism crowd got a lot of coverage and other disabilities weren’t depicted in the same light. That’s why. The RAW genuine emotion that captured the province of parents protecting their children against ignorant policy moves is what terrifies politicians from all political parties, and stakeholders. This is what worked! We need a lot more of that in order to make this system accountable to taxpayers and clients under their care, to ensure adequate protection of vulnerable populations the same way banks protect their clients and money and ensure that all the disabled in this province receive the supports they need. Many of these unaccountable employees of the NGOs belong to labour unions. I’d be very attentive about the motives of any advocacy group claiming to represent the interests of you and your family that has aligned themselves with these labour unions.
As a society we need to move past the preconception that giving to the disabled is an act of charity, rather than ensuring people with disabilities are afforded the same protections under our constitution, and that those tasked to providing support to our most vulnerable on the front lines are held to high ethical standards with appropriate oversight (especially on the NGOs and gatekeepers) and ensuring support reaches our most vulnerable rather than having orgies at the expense of the constitutional rights of people with disabilities. Change must happen!