The Ontario Disability Coalition (ODC) is a grassroots coalition that was established in 2017 to be the voice of parents, caregivers, health service professionals and disabled individuals children and adults. Our primary goal is to advocate for health care services that a person needs to find their way towards achieving as normal a life as possible.
Our secondary goal is to ensure that all publicly funded services, have minimal wait times, are fully accessible and flexible to meet the needs of all disabled individuals. We are willing to assist with policy development related to issues of children, youth and adults with disabilities. We will co-operate where possible with other organizations and advocates for individuals with disabilities. We will assist with and support the efforts of parents, caregivers and professionals to meet the needs of people with disabilities. We will preach accountability and transparency with all publicly funded or public supported health services.
This blog is managed by Geoffrey Feldman, Director, Ontario Disability Coalition
On September 20th 2019, the day of Ontario Disability Coalition (ODC) Queens Park rally “We are not red tape”, ODC advocates also had an opportunity to meet with senior ministry staff and the Honourable Minister Todd Smith. This was an opportunity for self advocates and their caregivers to share their hardships and experiences with Minister Todd Smith about growing up and living in Ontario with a physical and developmental disability.
They talk openly about why we need an Ontario Disability Program. Self Advocates open up, so we can move forward to a Barrier Free Ontario. Minutes for our meeting are posted below.
Front Row Brandon Colatosti, Lexi Tokhi, Ashley Caldwell and Dante Wellington Backrow Kevin John-Head and Michael Madden. Posing outside the provincial legislature before meeting with Minister Todd Smith Pictured is Minister Todd Smith and his staff seated at a large board table surrounded by self advocates children, youth and adults living with disabilities in Ontario. They shared their experiences and barriers they faced as they advocated for an Ontario Disability Program to ensure Ontario is Barrier Free.
Image reads: speak up rally at Queen’s Park stop discrimination fund all disabilities, Friday September 20th@ 11AM odcoalition.com and the Ontario Disability Coalition Logo.
TORONTO, ONTARIO– On Friday September 20th, 2019 at Queen’s Park from 11:00am until 12:00pm the Ontario Disability Coalition is hosting a rally to allow people with disabilities to speak up as we urge the government to STOP discrimination and fund ALL disabilities.
Self-advocates will be calling on the Ontario government to take immediate action and implement policies to that will ensure Therapy for ALL and request consultation with the entire disability community, to create a robust and comprehensive Ontario Disability Program.
We are asking that our government end the disability divide in public policy to ensure that no child youth or adult is left behind. Ontarian’s are not in support of discriminatory service allocation that excludes children and adults with real needs. Critical to include those needs as it lessens the burden on schools, employers, families, and the health system almost immediately.
The Ontario Disability Coalition was founded to address and redress the ongoing and proactive discrimination of the Government of Ontario against persons with disabilities. It is a grassroots organization, comprised of thousands of concerned parents, caregivers, and persons living with disabilities in Ontario.
MEDIA CONTACT: For more information, please contact: Sherry Caldwell, Co-Founder Ipek Kabatas, Executive Member
As a Canadian I’m writing to you as a passionate change maker and mother to my daughter Ashley who is 14 years old and has a rare genetic syndrome. She requires several assistive devices to participate fully and actively in daily living. She uses a wheelchair, a feeding tube for nutrition, and a communication device to allow her to communicate with family and friends. Supporting and watching her grow has been a joy but also emotionally, physically and financially draining. As we run into endless barrier after barrier it is a constant uphill battle to ensure she has essential health services and necessary assistive devices which improve the quality of her life, reduce her pain, allow her an ordinary life. Sadly, in Ontario and across Canada rehabilitation therapies and access to equipment like wheelchairs is unaffordable to the average Canadian family due to the extraordinary cost.
There is a patch work of rehabilitation service across Canada with ocean size gaps. It is extremely costly to raise a child with a disability the therapies and equipment needed annually cost well over $40,000 a year. To put that in perspective it is like buying a new car every year. I do not know any family that can afford that.
I am writing to you today to express my concerns with the push for a National Autism Strategy that you’re championing, as this leaves the needs of millions of children, youth and adults with other disabilities across Canada will not be addressed.
The stark reality is that all individuals with disabilities, irrespective of labels, require and are deserving of appropriate therapeutic interventions, access to timely essential health services and assistive devices. No individual should be forced to wait their turn for life-altering therapies and necessary supports while the government limits its focus to only one diagnosis.
The government needs to ensure that the advantages being afforded to children, youth and adults with a diagnosis of autism through a National Autism Strategy, are equally available to children, youth and adults with any other disability such as but not limited to Down Syndrome, Cerebral Palsy, Muscular Dystrophy, Chromosome Abnormalities and many other rare and unique diagnosis. I’m urging you to ensure election platforms advocate for a National Disability Strategy which is inclusive of ALL disabilities rather than focus solely on one diagnosis.
Currently in Ontario families of children with other disabilities feel ignored and forgotten. In Ontario government policies and practices towards individuals with any disability other than autism are devastating and discriminatory.
When you look across Canada it is clear our disability systems are unfair and inefficient clearly in a state needing reform. We do believe in 2019 this discrimination and inefficient systems need to end.
I strongly urge the Canadian Senate and all levels of government to look at Australia as they have created an inclusive National Disability Strategy which does not divide the disability community but instead unites their nation in a non-disabling society.
Australia likewise has a National Disability Insurance Strategy (NDIS) which helps people with disabilities achieve their goals using a lifetime approach and investing with people with disabilities early on to achieve their goals later in life. The NDIS recognizes that everyone needs and goals are different and they provide people with individualized choices and control. Here is a short video prepared by NDIS which will explain this further.
I’d welcome a meeting with you to discuss this in further detail.
In the 2019 federal election, we need campaigns to ensure every child, youth and adult with a disability in Canada is supported and afforded equal opportunities in life. I urge you to advocate and be a champion for a National Disability Strategy where no one will be left behind. The time is now to unite and support the entire disability community to achieve a barrier free Canada.
We can’t do this without you! Do you have 30 seconds to spare? The Government of Ontario needs to stop discriminating between disabilities. All individuals with disabilities should be supported according to their need not their label! Let’s come together with a united voice and be heard; we are asking the government to stop systemic discrimination, and to start supporting the needs of ALL disabilities. Click here to access this MPP letter writing tool.
This tool is brought to you by our friends at Project 321 Peel. This group of determined parents and caregivers set of goal of sending 1500 letters, they are just one week in and 528 letters have been sent. Let’s ALL help them reach this goal.
Ashley C, Sherry Caldwell, Dante W, Sharon Gabison and Ajay Sharma pictured in Queens Park media studio behind a wooden desk with Ontario and Canadian flags in the background.
On Monday, May 6, 2019, the Ontario Disability Coalition was pleased to hold a press conference at Queen’s Park, to discuss the plight of over 50,000 children in the province of Ontario with disabilities other than autism.
In response to our press conference, Minister Lisa MacLeod admitted that children with special needs other than autism are deserving of support from the Ontario government.
Unfortunately, her solution was to direct 50,000 families of children with disabilities other that autism to the current Ontario Autism Consultations.
This simply will not do.
Today, the Ontario Disability Coalition sent a response back to Ministers MacLeod and Christine Elliott, to express our concern and frustration at the government’s continued dismissal of the needs of thousands of children with disabilities in Ontario:
Page two of a letter from ODC to Ministers Lisa Macleod and Christine Elliott
He is physically and developmentally disabled and he is about to lose most of the support services that help him live a healthy, engaged life. Why? Because he will soon age out of the school system.
That’s right. When Deane and thousands of disabled young people like him reach the age of 21, the majority of support services provided by our society stop. Families like mine will be left with only their abiding love because there are few to no activities, facilities or programs to meet their children’s extensive needs.
Soon, my exams begin and Deane graduates high school. Graduating is a big deal for Deane and an even bigger deal for my parents because my brother’s future is so uncertain. Going into post-school life is hard for anyone. When I graduate I will have many choices of what to do with my life. Deane’s choices are limited by his disability.
The plan right now is that he will stay at home with my mom and dad until he makes it to the top of a 5-to-25-year waiting list for a place in a special care home. The challenges are endless. One of my parents may have to stop working, meaning one less income. And, what will they do all day – day after day – to keep Deane stimulated and learning? Getting out and about is not easily done. Neither mom nor dad can lift Deane by themselves and his mobility lift can’t go everywhere with him.
Deane went to a day program outside the city as a test to see how he liked it, and whether he and the program can fit together. He said that he at least liked it a little bit. I guess it will take a while for him to get used to it. Perhaps he will try this next year but because it is such a far commute it is a temporary fix, not a solution.
As difficult as this situation is, my parents and I are a loving, positive team. We are not wealthy but we have some resources. When I imagine being a single parent who doesn’t speak much English, who has a developmentally disabled child, I despair. When I imagine a support system that would help Deane and all disabled people throughout their lives, I wonder why it does not exist in our wonderful Canada.
We need all levels of government to recognize this, and put into place a re-defined support service system that helps the disabled and their families lead lives of joy, security, and comfort. We need post-secondary education options for these people who now have nowhere to go. We need support services that do what parents, siblings, and un-paid caregivers often can’t do by themselves.
Please bring the plight of maturing disabled people and their families to the attention of your representatives at all levels: municipal, provincial, and federal. Tell them that getting your vote depends on how well they support all the people of Canada. Deane and I know that’s how democracy works.
Rayne
Please add your own comment to the story I have shared and share it with your MPP and anyone else you think needs to hear this message. You can find your MPP here: https://www.ola.org/en/members/parliament-42
“Funding is paramount to preserve the quality of life for people who live with disabilities. I am a Student Services Representative at Mohawk College & Standardized Patient at McMaster in Hamilton respectively, and a man who volunteers with passion in my community to ensure that all people are treated with dignity and respect. I am speaking to you today through this statement to ensure that this doesn’t fall by the wayside. All persons are people first. Should we remove funding from those who require it to preserve their activities of daily living, we are compromising QUALITY of life.
There’s a real reliance on assistive technology According to Statistics Canada’s 2012 Canadian Survey on Disability, over 81% of people with disabilities reported using some kind of assistive technology or specialized equipment to help them move, communicate, learn or carry out the daily activities of life. Disability is expensive
A customized power wheelchair can cost more than $25,000. A porch lift can cost upwards of $5,000. A specially designed walker can cost up to $2,500. Modifications and renovations to make a home accessible can cost tens of thousands of dollars. Disability is expensive. For a family, it can cost more than $40,000 a year to care for a child with a severe disability, yet some of these families have a total annual income of barely that much. According to Easter Seals Canada (https://easterseals.ca/english/wp-content/uploads/2016/12/Disability-in-Canada-Facts-Figures.pdf)
Page 1 of 3 Disability in Canada: Facts and Figures 15% of the world identifies as having a disability According to the World Health Organization, 15% of the world’s population (an estimated 1.1 billion
As someone who is volunteers with the Rick Hansen Foundation, Catholic Youth Organization, United Way, Disability Justice Network of Ontario, The Forward Movement and someone who has pioneered an initiative entitled Above & Beyond – Bridging the Gap to accessibility & inclusion – I implore you to take a look at the numbers. They are staggering, more often than not we are directly or indirectly affected by disability. But before disability, we are people first, we deserve to be treated with dignity and respect like anyone in our communities. Eliminating funding takes that away. We are often the subjected to stereotypes and stigmas, we are often exposed to assumptions-based mindsets. “Nothing About Us, Without Us”. Eliminating or reducing those funds restrict our voice. Often times, people with disabilities live in poverty, increasing funds once again increases ones ability to be an active member of their community, participate in recreation, become employable and ensure that our quality of life is on par with our able-bodied cohorts and that benefits everyone. We must reconsider and ensure all lives are maintained with dignity, integrity and respect. Don’t take something away from those who need it the
Starting next week, every white woman under the age of 25 in
2019, who is a size 2 or under, will have their student loans cancelled by the
Government of Ontario.
If you’re a man, not white, not slim, or over 25, you’re out of luck.
Absurd, isn’t it?
Put another way, starting next week, children with autism up to the age of 17 will start receiving anywhere from $5000 to $20,000 per year from the government for private physiotherapy, speech therapy, and occupational therapy.
If your child has a disability other than autism, or is over the age of 18, you’re out of luck.
Unfortunately, this really
is happening.
Why is the Government of Ontario telling us that a 12 year
old with autism deserves $5000 a year from the government to pay for private physiotherapy,
but a 12 year old with cerebral palsy does not?
Today appeared to be letter writing day for the ministry as a number of members received the same response letter. It did not take long for members to respond.
Dear Mrs Jane Cleve,
Thank you for your response letter. Just to clarify my letter to Honorable Lisa MacLeod and Premier Doug Ford was specifically about the lack of therapy and funding for therapy for children with physical and developmental disabilities(zero). I am very much capable of navigating/looking for services/resources; the problem isn’t my inability to navigate the system but rather there isn’t anything available in terms of physical therapy, occupational therapy as well as speech/communication therapy for children like my son. The whole point was/is to ask for change to the current system which has been discriminating against children like my son. How is it that one disabled child (with autism) can get $80,000+ for various therapies including and not limited to physical therapy while at the same time another disabled child (physically and developmentally disabled) gets $0?
I am not satisfied with your letter/response as it doesn’t speak to my concerns and frustrations; the government of Ontario is discriminating against my child as it is not giving same support to him as it does for children with autism.
I hope to see prompt change to current system which lacks support for physically and developmentally disabled children. There are thousands of children like my son, waiting to see same treatment as children with autism spectrum disorder.
I hope to hear back from you; addressing the concerns that I have been tirelessly expressing along with thousands of other parents.
