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.

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.  

Sunday December 10, 2017 – The Ontario Disability Coalition is releasing this statement today which is the International Day of Human Rights.

The Hon Michael Coteau MPP, Ministry of Children and Youth Services has invested $500 Million Dollar into Autism Services.  While this is welcome wonderful news, they are leaving out thousands of children with disabilities in Ontario.

The Universal Declaration of Human Rights (UNUDHR) was established by the United Nations in 1948.  The Declaration outlines international laws that protect individuals’ civil, political, economic, social, and cultural rights from birth, and are stemmed from ideologies of dignity and autonomy.

  • Article 1 of The UNUDHR upholds the rights of persons with disabilities, in stating that all human beings are born free and equal in dignity and rights.
  • Article 2 specifies that this is not dependent on “race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status” or the “political, jurisdictional or international status of the country or territory to which a person belongs, whether it be independent, trust, non-self-governing or under any other limitation of sovereignty.”
  • Article 3 highlights that “everyone has the right to life, liberty, and security of person.”

These Articles establishes that parents and children with all disabilities have the same rights as parents and children with no such needs.

The UNUDHR Article 23 (2) states that, “everyone, without any discrimination, has the right to equal pay for equal work.”  However, in relation to inequitable therapies and caregiving roles, parents of children with disabilities have dual roles as parents and caregivers, meaning they work as unpaid medical care providers.  These unpaid caregivers are providing therapy, nursing, medical, and social work care 24 hours a day.  Thus, the health and social system in Ontario is taking advantage of parents’ free labour to fill gaps in funding and services that should otherwise be provided by the Ministry of Child & Youth Services and Children Treatment Centres.

Further, Article 25, outlines that children with disabilities, and the caregivers of children with disabilities have a right to the same standard of living as everyone else: “everyone has the right to a standard of living adequate for the health and well-being of [themselves] and of [their] family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability … or other lack of livelihood in circumstances beyond [their] control.”

However, parent surveys unveiled how they and their children’s human rights are constantly violated through Children Treatment Centres withholding and limiting access to therapy.  One of the key ways caregivers and their children are discriminated against in the rehabilitation system is in how the child’s needs are evaluated based on whether they can improve functional within a 6-week period compared to another less disabled child, rather than an evaluation based on the child’s individual needs. Most surveyed participants had difficulties in accessing timely and adequate rehabilitation therapies though, their children met the definition of children with disabilities as set by the Ministry of Health and Long-Term Care.  Inability to access timely therapies and equipment results in social isolation, avoidable health inequities and inequalities, and a lower standard of living for children and their parents.  Not being able to access therapist presents a barrier from accessing needed equipment.  Children should not need to prove they can use the equipment before they get it, we know that children need time and practice to learn to use equipment such as walkers, wheelchairs, communication devices, to name just a few.

On Thursday, December 7th, 2017 the Minister Michael Coteau released a statement of the investment of $500 million dollars into Autism services.  Part of this investment is for a direct funding model for behaviour therapies for children diagnosed with Autism.  We have known that this announcement was coming out for months.  For months, we have asked this Ministry to ensure the policy framework included ALL children with disabilities in Ontario and to ensure that they ALL have equitable access to ALL therapies (OT/PT/SPL/AAC) through the same direct funding model.  Again, thousands of children in Ontario continue not to have access to therapy and equipment.  In the end, so many children are left behind.

  • Why does Ontario continue to be selective in which children they serve and which will remain unserved?
  • Where is the equal opportunity to life?
  • Where is the dignity?
  • Where is the equality?
  • Where is the equity?

We urge you to tweet Hon Michael Coteau MPP Ministry of Children and Youth Services / Anti-Racism Directorate at @Coteau, you may also contact his office by phone at 416-212-7432 and by email at  mcoteau.mpp@liberal.ola.org

We want #NoChildLeftBehind.

Lynda Reusse, CoFounder, Ontario Disability Coalition
Sherry Caldwell, CoFounder, Ontario Disability Coalition
Manda Krpan Mesic,  CoFounder, Ontario Disability Coalition
Geoffrey Feldman, Director, Ontario Disability Coalition
Samadhi Mora-Severino (PhD student), Advisor, Ontario Disability Coalition               Paula Tzouanakis Anderson, Advisor, Ontario Disability Coalition

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

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