We need change immediately, lives are literally at stake.

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Marcy White with her son Jacob Trossman and their dog Felix on Tuesday April 5, 2016. Jacob has Pelizacus-Merzbacher disease which is a progressive disease that leaves him wheelchair bound, he doesn’t speak and can’t feed himself and relies on 24-hour nursing care. Craig Robertson/Toronto Sun/Postmedia Network

By Marcy White

When she was Ontario Patient Ombudsman, Christine Elliott came to my house to meet my son. She advocated repeatedly, but ineffectively, on his behalf when she learned about the frequent nursing errors Jacob experienced at home. We had weekly meetings discussing the status of her efforts.

The current Minister of Health, the same Christine Elliott, knows that medically fragile patients’ lives are at risk because of incompetent and inconsistent home nursing.

We need change immediately, lives are literally at stake. Vulnerable, innocent and fragile lives.

In the midst of caring for my severely disabled teenager, I thought I was the only one struggling with incompetent nursing care at home. I didn’t realize that having to wake a slumbering nurse out of a drug-induced sleep at 3 o’clock on a Saturday afternoon or receiving a panicked telephone call from a nurse explaining that my child with no independent movement“somehow” toppled out of his bed onto the hard floor because she forgot to raise the side-rails was an experience that other parents of special needs children shared.

I am not alone.

Steve (all names have been changed) walked into his medically fragile daughter’s bedroom at 2am only to be confronted with a horrific sight: the nurse fast asleep on the floor, holding onto one of the legs of the baby’s crib, a water bottle filled with an alcoholic beverage by her side.

As Martha answered her phone, she was floored when the school principal informed her that the nurse who was assigned to care for Martha’s child was fast asleep, drunk, on a sofa in the kindergarten classroom.

Several parents recounted experiences where they had nurses show up for a day shift right after the nurse finished an overnight shift somewhere else. Or nurses showed up for a night shift following a full day shift.

An infant girl fell off the changing table while under the care of a nurse. How did it happen? The nurse walked away from the child on the table. The baby was injured, required stitches and the nursing agency blamed the parents for not having the changing pad bolted to the table.

Over the past four years I have written several articles about the incompetence that exists within the home-care nursing system in Ontario and the dangerous situations my medically fragile son has faced as a result of this ineptitude.

Nobody was ever held accountable for the many errors we witnessed, including medication errors, poor judgement and inexperience with life-sustaining equipment. In our case consequences were never discussed, much less enforced. Nurses who endangered my son’s life were not retrained or disciplined, they were simply reassigned to other, less outspoken, families.

When one person speaks out or complains, it’s easy for an onlooker to assume that this is an isolated occurrence, the family is too demanding or the stories are exaggerated. But when the same experiences occur in homes across the province, it’s time for a thorough investigation, accountability and consequences. The experiences I shared here are only a fraction of the horrors that take place daily in homes and schools with innocent people who are dependent on skilled nurses for their ongoing survival. There are a slew of families who are too afraid to complain as they fear losing the services they currently receive. The worry is real – my son lost services after I began sharing my experiences.

The College of Nurses of Ontario (CNO) must play a greater role in ensuring that nurses are competent. They need to create an easily accessible route to report serious medical errors. Complaints to the CNO currently fall on deaf ears and follow-up is mostly non-existent. The nursing agencies and the Local Health Integration Networks (LHIN) have clearly proven that they are not willing to do this.

Obliterating the LHINs is not the solution. This change will not create responsibility or instill consequences. It will not protect unsuspecting patients from incompetent care. The new legislation fails to address the crux of the problem – poor oversight of nursing skills within the community and a lack of experienced nursing to care for the medically complex patients in their homes.

The Minister of Health and the CEO of hospitals in Ontario need to unite with families like mine immediately and figure out a way for our vulnerable family members to receive the exact same quality of care that they receive when they are hospitalized. We need to redefine what community nursing looks like for medically complex patients and extend the care provided by the hospital into our homes.

We cannot wait until more mistakes occur. The lives of fragile human beings are at stake.

Note: Over the course of my son’s 17+ years of daily nursing, he has had, and continues to have, some wonderful, caring and skilled nurses. The purpose of this article is to address the lack of experienced and competent nurses who are responsible for the lives of Ontario’s most medically vulnerable population.

Support Marcy & Jacob and thousands of vulnerable citizens by reaching out to your MPP by phone or email with your stories and concerns.
https://www.ola.org/en/members/current/contact-information

Marcy White BSc, MSW, MBA, enjoyed a career in the investment industry until her son, Jacob was born in 2002. Her academic degrees did not prepare her for caring for Jacob, who was born with Pelizaeus-Merzbacher disease (PMD). Since Jacob’s diagnosis at 10-months-old, Marcy has become an advocate for her son. Marcy is the author of The Boy Who Can: The Jacob Trossman Story and has published many articles about the challenges of parenting a child with complex care needs. She co-founded curepmd.com to educate people about PMD and fund research into finding a treatment. Marcy lives in Toronto with her husband, Andrew, and their three children, Jacob, Sierra and Jamie.

Minutes from our meeting with Honourable Minister Todd Smith.

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.

Speak Up! We are NOT Red Tape Rally

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. 

#TherapyForAll
#NeedsNotLabels
#BarrierFreeOntario
#EndTheDisabilityDivide
#StopDisabilityDiscrimination

About the Ontario Disability Coalition 

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 

Email: OntarioDisabilityCoalition@gmail.com
Tel: (416) 903-5067

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

A Good Friday Surprise! Government of Ontario cancelling student loans – but only for the privileged few

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?

How is this right?  How is it fair?

This is systemic discrimination.

If this upsets you, let your MPP know.

Download the Ontario Disability Coalition Advocacy Kit.  It has step-by-step instructions to help you advocate for your child’s rights.

Let the government know that you will not stay silent.  

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