Michelle Kungl’s incredible journey

TheStar.com – News/GTA – From the moment she was born, Michelle Kungl has been fighting — for her life, for independence, for every breath. She has battled every obstacle with a warrior’s spirit, but now, as an adult, she is up against her most daunting barrier yet: Ontario’s rule-bound social assistance system.
Sept. 2, 2017.   By

Michelle Kungl was pulled from the womb with a broken neck and a grim prognosis.

Limp and unable to breathe, nobody expected her to survive the difficult forceps delivery 34 years ago. Her parents and doctors were preparing to remove her from life support when suddenly, an elated nurse noticed something miraculous — Michelle’s tiny hand, twitching.

It was the beginning of an astonishing journey that would see the bright-eyed baby — who had no movement below the neck and was attached to a ventilator to breathe — eventually learn to talk, sit up, walk and even ride a tricycle.

Photo blog: Against all odds: Michelle Kungl’s everyday battle

Throughout the ’80s and ’90s, Michelle became a media darling. The Star and other local newspapers wrote stories about the little dynamo at the Hospital for Sick Children who couldn’t go home because she relied on a ventilator. She was featured on CBC and CNN as a youngster determined to live like any other child.

Michelle would spend the first seven years of her life at Sick Kids — the hospital’s longest in-patient — before she was transferred to Bloorview Children’s Hospital, where she was finally allowed to go home for the first time with a nurse. Another seven years would pass before the province’s health-care system provided the support for her to live at home full time.

Doctors never thought she would live independently. But now 34, Michelle has her own apartment in Richmond Hill with on-site attendants. She drives a 2013 Dodge Caravan Crew SE, enjoys playing video games with her boyfriend, and earns more than $42,500 as a full-time credit card fraud investigator for a bank.

Michelle overcame impossible medical odds as a child. But as an adult she is fighting her most frustrating and seemingly impossible battle yet — convincing Ontario’s narrow and rule-bound social assistance system that she is disabled enough to receive help to cover her extraordinary medical and disability-related expenses.

“The impact this is having on her life is devastating,” says her lawyer Brendon Pooran, who specializes in human rights and financial security for people with disabilities.

* * *

It is early July and after 11 months of emails, phone calls and meetings, Michelle believes York Region’s Ontario Disability Support Program (ODSP) office has finally sorted out her monthly payments and extended health benefits.

The bad news comes first thing in the morning on July 6, when Michelle’s ODSP worker calls to say her provincial support has been suspended for about the 50th time in almost 14 years.

Today, it is because she received three bi-weekly paycheques in June and has — once again — exceeded the program’s monthly income threshold.

“I don’t believe that they care at all about me — I’m just a number, a case file,” she writes in an email to her mother.

“They give you as little as they possibly can and turn away from you like you are invisible.”

Since she finished college in 2003, Michelle has had to choose between her health — even survival — and being an active and productive member of society.

The irony is, she knows exactly what she could do to make these headaches disappear overnight.

“Everything would be so much easier if I just didn’t work,” she sighs, placing her index finger over the tracheotomy tube in her neck to steady her voice.

And yet Michelle, who achieved “top performer” status at work earlier this year, loves her job.

“When you are working it helps your mental health. You have friends. You have something to look forward to,” she says. “You have more income — more than what you get on ODSP (alone.) You have activities where you meet new people. It’s better than staying home alone, isolated.”

Working also keeps her moving, which is good for her overall health, especially her fragile lungs.

While living in hospital, Michelle learned to breathe without her ventilator, a process that requires her to think about every breath she takes. But she still needs her ventilator when she sleeps and is at home relaxing, in case she nods off.

“If I forget to breathe, I’m dead,” she says, only half joking.

Every time her income crosses a certain threshold, Michelle’s benefits are suddenly cut off, leaving her scrambling.

This day’s latest setback is particularly worrisome because her accessible van is being serviced and she is expecting a bill for more than $2,300. As she has explained dozens of times to ODSP workers who have questioned these expenses, she needs the van for work because accessible public transit doesn’t accommodate her hours.

To make matters worse, July is when her tenant and auto insurance are due. Michelle pays these expenses annually to save on both premiums and paperwork.

And it is a mountain of paperwork. Every year, Michelle collects scores of receipts and fills out dozens of forms to convince ODSP to help cover more than $25,000 in annual disability expenses that keep her healthy and able to work.

Keeping up with the paperwork has become a part-time job for Michelle and a full-time job for her mother Lyn, a 62-year-old artist and retired gallery manager.

“It’s hard watching your kid struggle,” says Lyn. “But this is beyond that. This is a human rights issue.”

Michelle can’t work, save money for a vacation or even consider marrying her boyfriend without losing critical financial support, she notes.

Michelle’s employer allows her to work set hours instead of the usual rotating shifts. Her Friday to Tuesday afternoon/evening work schedule accommodates the one-hour attendant care she receives every morning as well as an extra two-hour appointment every Wednesday when an attendant helps her do laundry or clean the circuits on her ventilator.

Michelle’s days off are packed with household errands, medical appointments, trips to her wheelchair service technician or auto mechanic and the ever-present administrative burden of keeping track of expenses she must submit monthly to prove she needs ODSP to survive.

Lost receipts mean lost support and more precious time fighting for reinstatement, so once a month she drives the documents to the ODSP office to ensure nothing goes missing in the mail.

As of June, Michelle was approved to receive $767.24 a month to offset what she and her mother estimate are almost $1,700 in monthly work-related disability expenses that allow her to hold down a job and remain active in the community. Life-sustaining medical equipment related to her ventilator adds another $507 to Michelle’s monthly costs that she recoups through her company benefits plan and ODSP extended health benefits.

But as the latest call from her ODSP worker shows, it is never a sure thing.

From the time she moved into her own apartment and began receiving ODSP in 2003, Michelle’s support has been questioned. There were disputes over her supplies, such as the “trach tie,” a collar she wears around her neck that holds her tracheotomy tube in place. The only brand the program covered cut into her neck until it bled.

When Michelle’s part-time work hours grew, the program would spit out form letters informing her she was cut off for earning too much.

Finally, in 2007, while living in Toronto, Michelle’s local legal aid and ODSP workers devised a “creative solution” that ensured her extraordinary disability costs would be taken into account so the cut-off notices would cease.

Her monthly income support and medical benefits remained relatively stable until last summer when she relocated to an apartment in Richmond Hill closer to work.

“When she moved, the whole thing fell apart,” Lyn says.

York Region ODSP didn’t recognize how her case was handled in Toronto, she says. “They told her go home. Deal with it on your own. You are making a salary and you should be able to look after this by yourself.”

Complicating matters — and adding to the paperwork — was Michelle’s promotion to full-time last fall which entitles her to company benefits.

Since ODSP is a “program of last resort,” Michelle can no longer submit an annual list of medical supplies to her local pharmacy, order what she needs every month, and have everything covered.

Instead, she must pay upfront. To get her money back, she has to submit the bills to her company benefits supplier, which covers 80 per cent of most items. Then she has to bring the benefit statement toODSP to cover the balance. Wheelchair repair costs are handled the same way.

See Chart: To Work or not to Work? – https://misc.thestar.com/interactivegraphic/2017/09-sep/01-michelle3/ci-michelle-html-Desktop.png

It is an onerous process that usually takes two months and explains why Michelle carries 14 credit cards to juggle the costs. She figures she owes about $30,000.

* * *

Dr. Karen Pape was in the neonatal intensive care unit at Sick Kids on Dec. 19, 1982, when Michelle arrived by ambulance from Women’s College Hospital, barely alive.

And it was Pape’s ground-breaking use of electric stimulation to Michelle’s inert muscles about three years later that changed the course of the young girl’s life.

But the neonatologist who has since retired from clinical practice, confesses she was shocked when she reconnected with her former patient several years ago while writing a book about innovative treatments for children with early brain and nerve injuries. After everyone worked so hard for Michelle as a child, public systems seem to have abandoned her as an adult, Pape says.

“She has really been failed. She has chronic ventilatory dependence. This is not a joke. She will die a respiratory death.”

As far as Pape knows, Michelle is the oldest person with a neonatal spinal cord injury who is partially ventilator dependent and living independently.

Adults with Michelle’s level of injury are usually in institutions and costing the public hundreds of thousands of dollars, she notes.

Instead of the constant paper chase and hour-long drive each way to Newmarket to submit her income statements and expense receipts every month to ODSP, Michelle’s time should be spent living her life and looking after her health, Pape says.

She should have a massage and physiotherapy once a week, an athletic trainer to keep her mobile and an occupational therapist to monitor her for safety and medical aids, the doctor says.

But none of this is covered by Michelle’s employer or ODSP. Her company benefits cover the equivalent of just one physiotherapy treatment a month.

Pape was the catalyst for Michelle’s move to Richmond Hill last summer where she lives in an accessible, ground-floor apartment in a non-smoking building with underground parking. Second-hand smoke, which was common in Michelle’s subsidized apartment in Toronto where she lived for almost 13 years, is particularly dangerous for people on ventilators, she notes.

“She was on the eighth floor of a building where the elevator used to break down. She couldn’t get up the stairs. Her father had to be called to carry her up,” she says, trying to control her exasperation. “She had to scrape the ice from her car in the outdoor parking lot in the winter.”

Michelle’s new apartment is a huge improvement, Pape says. But even that arrangement comes with a hitch. Now that Michelle is working full-time, her subsidized rent of $352 a month is expected to spike to a “market rate” of more than $1,100 after her annual rent review this fall.

* * *

“Hope you weren’t expecting Driving Miss Daisy,” Michelle quips, as she roars out of her underground parking garage in her gold Dodge Caravan. When Michelle is behind the wheel, it is nothing like the 1989 film about an aging Jewish widow and her African-American driver.

Her license plate — “Sparky8” — is a nickname from her years at Brother André Catholic High School in Markham. The blue butterfly tattoo on her left shoulder blade and an image of the moon and the stars inked on her lower back are also high school relics.

“Why not look at the moon when you are looking at the moon?” she says with a smirk.

The van, with a price tag of about $25,000, cost her more than $80,000 after accessibility modifications were installed to accommodate her electric wheelchair. Her 10-year, biweekly loan payments average about $941 a month, an expense that must be paid until 2022. Now that the warranty has run out, her service costs will escalate.

But the van is Michelle’s life-line.

Her first stop is almost always Starbucks drive-thru for a venti Caramel Frappuccino “no whipped cream, extra drizzle” or Tim Hortons for a large S’mores Iced Capp.

Michelle frowns as she pulls into Costco and looks for a wheelchair parking spot. The specially designated spaces often don’t work for her van, which requires at least five metres of clearance for the electric wheelchair ramp that extends out the right-hand sliding door at the push of a button on her keychain. As a result, she parks in a regular spot at the far end of the lot to avoid getting boxed in.

As she searches for a deal on plastic cups for a work pot-luck, she zips by startled shoppers in her electric wheelchair barking “careful now” in a “don’t mess with me” voice.

“People just don’t look where they are going,” she says. “And I hate it when people see someone in a wheelchair and just assume you need help.”

Michelle smiles in the check-out line where clerks greet her by name.

Growing up amid hospital routines, rules and regulations have given Michelle an intense, if not extreme, respect for authority, confidentiality and protection of personal information in both her professional and private life.

Punctuality and precision are also touchstones. “I’d rather be an hour early than a minute late,” she says describing how she allows 90 minutes for the 30-minute drive to work.

“Wheelchair breakdowns, accessibility ramp glitches and difficulty finding wheelchair parking spots. Having a disability takes time,” she says wryly.

* * *

Lyn has spent more than three decades fighting for her eldest child’s right to live a normal life. While raising two younger boys, she pushed for Michelle to leave the hospital with a nurse so she could attend school with her peers. She insisted her daughter join the school choir, become a Brownie and a Girl Guide, take taekwondo, go to summer camp and go on family vacations.

When Michelle became a young adult, Lyn insisted her daughter work part-time and attend college where Michelle lived in residence and learned to drive.

Michelle credits her mother for her fierce independence.

But her years of hospital life and Lyn’s constant advocacy have forged a difficult mother-daughter relationship.

“My mom and I both have different ideas about how I should be conducting myself,” Michelle says diplomatically.

Strong-willed and extremely private, Michelle refuses to introduce her mother to her boyfriend, a man with spastic cerebral palsy she has dated for more than two years.

And she is annoyed by Lyn’s discomfort with suctioning.

Because Michelle can’t cough, she carries a portable medical vacuum mounted to the back of her wheelchair that sucks the mucus from her lungs through a clear narrow catheter. When she sticks the catheter into her lungs through a tracheotomy tube in her neck, the machine whirrs and makes loud slurping noises.

“I suction wherever I want. But for some people, it makes them feel sick, so Lyn feels I should do it in the bathroom.”

As a teen, when she finally moved into the family home, Michelle was angry Lyn forced her to leave her wheelchair in the garage and walk or use her walker.

“She thought it was better for me. Which of course it was,” Michelle concedes.

Lyn loves her daughter. But she admits Michelle is sometimes hard to like.

“Michelle’s point of view is f-you. I’m disabled. Get over it,” Lyn says.

She frets about her daughter’s hygiene and diet. “I find it hard to go to her house and see bags of potato chips and packages of Mr. Noodle everywhere.”

“Michelle feels I have never accepted her disability,” Lyn says. “And she is right. I’ve never had the luxury of feeling sad for my daughter because I’ve been so busy fighting. I’ve always been the difficult one. I had to be. Because feeling sorry for Michelle was never going to get her where she needed to go.”

But Lyn knows she has to let go.

“Michelle is an adult. I have to let her live her life. We all have to let her live her life. And that is what this fight is all about.”

* * *

“Hey there, whatcha doing for dinner?” Michelle texts.

“Call me — easier that way.”

Michelle’s dad Werner, 60, a bronzed and burly auto mechanic who came to Canada from Germany when he was 18, suggests they meet for dinner at The Keg at 10 p.m. on a Tuesday night.

As often happens when couples have a critically ill child, Werner and Lyn’s marriage collapsed under the stress of Michelle’s traumatic birth and a subsequent failed medical malpractice lawsuit. But as Werner is quick to point out “we are all friends now.”

“Your mother deserves all the credit for getting you where you are at. It is all your mother,” he tells Michelle as he digs into his order of Baseball Top Sirloin. “She was always there for you. She is a very strong woman . . . Me? I’m just the comic relief.”

The restaurant rings with Michelle’s distinctive chortle as Werner recounts the time he took her to summer camp, drove onto the highway shoulder and told her the noise from the rumble strip was a helicopter circling overhead.

“I made you look,” he jokes.

Werner pulls out his cellphone to share photos of Michelle in a bikini, marching in the gay pride parade and riding on the back of his black Harley Davidson motorcycle.

Michelle is still laughing when Werner mentions he and his partner have just joined Bare Oaks Family Naturist Park, a local nudist colony.

“Maybe you want to join too,” he suggests.

“Could I take my wheelchair?” she shoots back.

“I can never say no to you,” her father replies. “Except when you ask for a Ferrari.”

Michelle’s youngest brother, Dane, 30, runs a tow truck company and is often around her father’s Markham auto shop. “I know he will always be there if I need him, especially if my van breaks down on the road,” she smiles.

But she is closest in both age and spirit to brother Ryan, 33, an electrical engineer, currently studying dentistry in Australia and about to apply to medical school.

“When I see Michelle I don’t see her disability,” he says over Facetime from Brisbane. “She has never been defined by her disability and has never asked for any handouts.”

Ryan, the peacemaker in the family, struggles to describe his frustration over his sister’s battles with bureaucracy.

“What I would hope for Michelle is to see her be supported by a program that gives her a fighting chance at continuing to lead a normal life in the face of extraordinary circumstances,” he adds. “A program that covers her basic medical needs without all the hassle of endless paperwork and red tape.”

Disability rights lawyer Pooran, is outraged by Michelle’s struggles with ODSP.

“This constant flow of paperwork — the monitoring and compliance requirements — has had a devastating effect on her physically, emotionally and psychologically. And it has to stop,” he says.

For more than two decades, Pooran and other disability advocates have been urging Queen’s Park to ease the onerous reporting requirements and strict income and asset rules that govern ODSP. He is accompanying Michelle and Lyn to a meeting with provincial officials early next month to discuss her case.

Although Pooran acknowledges Michelle is somewhat unique — few with her level of disability work full time — her experience highlights the problem most people on social assistance face when they try to work or receive income from other sources. More than 900,000 Ontarians rely on social assistance, including more than 490,000 on ODSP. Barely 10 per cent of individuals receiving ODSP have employment income.

It is a key issue Community and Social Services Minister Helena Jaczek asked a provincial working group to address last summer as part of a review of Ontario’s income security system. The group’s 10-year blueprint for reform, is expected in October.

In the meantime, a ministry spokesperson said the government has already increased the amount individuals and families can deduct from their earnings for disability-work related expenses from $300 to $1,000 a month.

The ministry is also planning to ease the burden of monthly income and expense reporting by allowing people to submit records electronically.

“We understand it can be inconvenient, onerous and at times a frustrating process for individuals,” said Kristen Tedesco. “We know we have more work to do and we look forward to the recommendations from the Income Security Working Group in order to further improve social assistance programs in Ontario.”

When the Kungls lost their medical malpractice lawsuit in 1989, it was a crushing blow to Michelle’s financial future.

As the judge warned in his ruling: “I cannot help but feel that the law has failed the infant plaintiff Michelle. Society must not fail her.”

The words echo as Lyn continues to battle for her adult child.

“Our society should be looking after disabled people,” she says. “Our programs should be looking after Michelle’s medical expenses. If she was not working, it would all be covered. It doesn’t make any sense.”

Lyn confesses she urged doctors to take her severely-injured baby off life-support.

“I can tell you there were times when I wished for the pain of watching Michelle’s struggle to breathe to end,” she says.

“She is a woman now. But the struggle to have a life — a life that you and I take for granted — has always been beyond her reach,” she continues. “This is the pain that I share with my child who lives.”

https://www.thestar.com/news/gta/2017/09/02/michelle-kungls-incredible-journey.html

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