National Disability Strategy

The Ontario Disability Coalition 

May 23, 2019

Dear Senator Jim Munson,

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. 

According to Easter Seals Canada 

(https://easterseals.ca/english/wp-content/uploads/2016/12/Disability-in-Canada-Facts-Figures.pdf)

Disability in Canada: Facts and Figures – Easter Seals CanadaPage 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 billioneasterseals.ca

 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. 

Sincerely,

Sherry Caldwell

Co-Founder, Ontario Disability Coalition

Email: OntarioDisabilityCoalition@gmail.com

Fund the Need Not the Label

We need your help to ensure equality for ALL disabilities

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.

#NoChildLeftBehind
#InclusionRevolution

Minister MacLeod, over 50,000 Children with Disabilities other than autism in the Province of Ontario deserve better

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

News reporters following ODC’s press conference:

May 7th 2019,
TorStar QPBriefing By Sneh Duggal
Disability advocates say province’s current disability strategy is ‘picking winners and losers’
https://www.qpbriefing.com/2019/05/07/disability-advocates-say-provinces-current-disability-strategy-is-picking-winners-and-losers/fbclid=IwAR1puf713pra0esdw23JOQ3QzET6xXvGhqH1DgA7pcDe1qhqKi_2Yyl_m1M

May 6th 2019,
Toronto Star By Kristin Rushowy
Children with disabilities ignored by province, parents say

Deane is my brother.

Rayne smiling with her brother Deane

Deane is my brother.

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

“We are people first, we deserve to be treated with dignity and respect like anyone in our communities”

Hamilton Ontario, Statement from
Anthony Frisina Above & Beyond Producer /Founder 
“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)
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
most.
Anthony Frisina (905) 741-2712
Above & Beyond Producer/Founder
Anthony_Frisina

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