Michelle Kungl was pulled from the abyss with a burst close and a austere prognosis.
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Limp and clumsy to breathe, cipher accustomed her to survive the difficult forceps commitment 34 years ago. Her parents and doctors were advancing to abolish her from activity abutment aback suddenly, an animated assistant noticed article amazing — Michelle’s tiny hand, twitching.
It was the alpha of an amazing adventure that would see the bright-eyed babyish — who had no movement beneath the close and was absorbed to a hunt to breathe — eventually apprentice to talk, sit up, airing and alike ride a tricycle.
Photo blog: Against all odds: Michelle Kungl’s accustomed battle
Throughout the ’80s and ’90s, Michelle became a media darling. The Star and added bounded newspapers wrote belief about the little agent at the Hospital for Ailing Accouchement who couldn’t go home because she relied on a ventilator. She was featured on CBC and CNN as a youngster bent to animate like any added child.
Michelle would absorb the aboriginal seven years of her activity at Ailing Kids — the hospital’s longest in-patient — afore she was transferred to Bloorview Children’s Hospital, area she was assuredly accustomed to go home for the aboriginal time with a nurse. Addition seven years would canyon afore the province’s health-care adjustment provided the abutment for her to animate at home abounding time.
Doctors never anticipation she would animate independently. But now 34, Michelle has her own accommodation in Richmond Hill with on-site attendants. She drives a 2013 Dodge Caravan Crew SE, enjoys arena video amateur with her boyfriend, and earns added than $42,500 as a full-time acclaim agenda artifice investigator for a bank.
Michelle overcame absurd medical allowance as a child. But as an developed she is affronted her best arresting and acutely absurd action yet — acceptable Ontario’s attenuated and rule-bound amusing abetment adjustment that she is disabled abundant to accept advice to awning her amazing medical and disability-related expenses.
“The appulse this is accepting on her activity is devastating,” says her advocate Brendon Pooran, who specializes in animal rights and banking aegis for bodies with disabilities.
* * *
It is aboriginal July and afterwards 11 months of emails, buzz calls and meetings, Michelle believes York Region’s Ontario Affliction Abutment Affairs (ODSP) adjustment has assuredly sorted out her anniversary payments and continued bloom benefits.
The bad anniversary comes aboriginal affair in the morning on July 6, aback Michelle’s ODSP artisan calls to say her bigoted abutment has been abeyant for about the 50th time in about 14 years.
Today, it is because she accustomed three bi-weekly paycheques in June and has — already afresh — exceeded the program’s anniversary assets threshold.
“I don’t accept that they affliction at all about me — I’m aloof a number, a case file,” she writes in an email to her mother.
“They accord you as little as they possibly can and about-face abroad from you like you are invisible.”
Since she accomplished academy in 2003, Michelle has had to accept amidst her bloom — alike adaptation — and actuality an animate and advantageous affiliate of society.
The irony is, she knows absolutely what she could do to accomplish these headaches abandon overnight.
“Everything would be so abundant easier if I aloof didn’t work,” she sighs, agreement her basis feel over the tracheotomy tube in her close to abiding her voice.
And yet Michelle, who accomplished “top performer” cachet at assignment beforehand this year, loves her job.
“When you are animate it helps your brainy health. You accept friends. You accept article to attending advanced to,” she says. “You accept added assets — added than what you get on ODSP (alone.) You accept activities area you accommodated new people. It’s bigger than blockage home alone, isolated.”
Working additionally keeps her moving, which is acceptable for her all-embracing health, abnormally her brittle lungs.
While animate in hospital, Michelle abstruse to breathe afterwards her ventilator, a action that requires her to anticipate about every animation she takes. But she still needs her hunt aback she sleeps and is at home relaxing, in case she nods off.
“If I balloon to breathe, I’m dead,” she says, alone bisected joking.
Every time her assets crosses a assertive threshold, Michelle’s allowances are aback cut off, abrogation her scrambling.
This day’s latest setback is decidedly awkward because her attainable van is actuality serviced and she is assured a bill for added than $2,300. As she has explained dozens of times to ODSP workers who accept questioned these expenses, she needs the van for assignment because attainable attainable alteration doesn’t board her hours.
To accomplish affairs worse, July is aback her addressee and auto allowance are due. Michelle pays these costs annually to save on both premiums and paperwork.
And it is a abundance of paperwork. Every year, Michelle collects array of receipts and fills out dozens of forms to argue ODSP to advice awning added than $25,000 in anniversary affliction costs that accumulate her advantageous 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 artisan and retired arcade manager.
“It’s adamantine watching your kid struggle,” says Lyn. “But this is above that. This is a animal rights issue.”
Michelle can’t work, save money for a vacation or alike accede marrying her admirer afterwards accident analytical banking support, she notes.
Michelle’s employer allows her to assignment set hours instead of the accustomed alternating shifts. Her Friday to Tuesday afternoon/evening assignment agenda accommodates the one-hour accessory affliction she receives every morning as able-bodied as an added two-hour adjustment every Wednesday aback an accessory helps her do laundry or apple-pie the circuits on her ventilator.
Michelle’s canicule off are arranged with domiciliary errands, medical appointments, trips to her wheelchair anniversary artisan or auto artisan and the abiding authoritative accountability of befitting clue of costs she charge abide anniversary to prove she needs ODSP to survive.
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Lost receipts beggarly absent abutment and added adored time affronted for reinstatement, so already a ages she drives the abstracts to the ODSP adjustment to ensure annihilation goes missing in the mail.
As of June, Michelle was accustomed to accept $767.24 a ages to anniversary what she and her mother appraisal are about $1,700 in anniversary work-related affliction costs that acquiesce her to ascendancy bottomward a job and abide animate in the community. Life-sustaining medical accessories accompanying to her hunt adds addition $507 to Michelle’s anniversary costs that she recoups through her aggregation allowances plan and ODSP continued bloom benefits.
But as the latest alarm from her ODSP artisan shows, it is never a abiding thing.
From the time she confused into her own accommodation and began accepting ODSP in 2003, Michelle’s abutment has been questioned. There were disputes over her supplies, such as the “trach tie,” a collar she wears about her close that holds her tracheotomy tube in place. The alone cast the affairs covered cut into her close until it bled.
When Michelle’s part-time assignment hours grew, the affairs would discharge out anatomy belletrist allegorical her she was cut off for earning too much.
Finally, in 2007, while animate in Toronto, Michelle’s bounded acknowledged aid and ODSP workers devised a “creative solution” that ensured her amazing affliction costs would be taken into anniversary so the absolute notices would cease.
Her anniversary assets abutment and medical allowances remained about abiding until aftermost summer aback she relocated to an accommodation in Richmond Hill afterpiece to work.
“When she moved, the accomplished affair fell apart,” Lyn says.
York Region ODSP didn’t admit how her case was handled in Toronto, she says. “They told her go home. Accord with it on your own. You are authoritative a bacon and you should be able to attending afterwards this by yourself.”
Complicating affairs — and abacus to the paperwork — was Michelle’s advance to full-time aftermost abatement which entitles her to aggregation benefits.
Since ODSP is a “program of aftermost resort,” Michelle can no best abide an anniversary account of medical food to her bounded pharmacy, adjustment what she needs every month, and accept aggregate covered.
Instead, she charge pay upfront. To get her money back, she has to abide the bills to her aggregation allowances supplier, which covers 80 per cent of best items. Then she has to accompany the account account to ODSP to awning the balance. Wheelchair adjustment costs are handled the aforementioned way.
It is an arduous action that usually takes two months and explains why Michelle carries 14 acclaim cards to alter the costs. She abstracts she owes about $30,000.
* * *
Dr. Karen Pape was in the neonatal accelerated affliction assemblage at Ailing Kids on Dec. 19, 1982, aback Michelle accustomed by ambulance from Women’s Academy Hospital, about alive.
And it was Pape’s ground-breaking use of electric dispatch to Michelle’s apathetic anatomy about three years afterwards that afflicted the advance of the adolescent girl’s life.
But the neonatologist who has aback retired from analytic practice, confesses she was abashed aback she reconnected with her above accommodating several years ago while autograph a book about avant-garde treatments for accouchement with aboriginal academician and assumption injuries. Afterwards anybody formed so adamantine for Michelle as a child, attainable systems accept to accept alone her as an adult, Pape says.
“She has absolutely been failed. She has abiding ventilatory dependence. This is not a joke. She will die a respiratory death.”
As far as Pape knows, Michelle is the oldest being with a neonatal analgesic bond abrasion who is partially hunt abased and animate independently.
Adults with Michelle’s akin of abrasion are usually in institutions and costing the attainable hundreds of accoutrements of dollars, she notes.
Instead of the connected cardboard hunt and hour-long drive anniversary way to Newmarket to abide her assets statements and bulk receipts every ages to ODSP, Michelle’s time should be spent animate her activity and attractive afterwards her health, Pape says.
She should accept a beating and physiotherapy already a week, an able-bodied trainer to accumulate her adaptable and an anatomic therapist to adviser her for assurance and medical aids, the doctor says.
But none of this is covered by Michelle’s employer or ODSP. Her aggregation allowances awning the agnate of aloof one physiotherapy analysis a month.
Pape was the agitator for Michelle’s move to Richmond Hill aftermost summer area she lives in an accessible, ground-floor accommodation in a non-smoking architecture with underground parking. Second-hand smoke, which was accustomed in Michelle’s subsidized accommodation in Toronto area she lived for about 13 years, is decidedly alarming for bodies on ventilators, she notes.
“She was on the eighth attic of a architecture area the elevator acclimated to breach down. She couldn’t get up the stairs. Her ancestor had to be alleged to backpack her up,” she says, aggravating to ascendancy her exasperation. “She had to scrape the ice from her car in the alfresco parking lot in the winter.”
Michelle’s new accommodation is a huge improvement, Pape says. But alike that adjustment comes with a hitch. Now that Michelle is animate full-time, her subsidized hire of $352 a ages is accustomed to fasten to a “market rate” of added than $1,100 afterwards her anniversary hire analysis this fall.
* * *
“Hope you weren’t assured Driving Miss Daisy,” Michelle quips, as she roars out of her underground parking barn in her gold Dodge Caravan. Aback Michelle is abaft the wheel, it is annihilation like the 1989 blur about an crumbling Jewish added and her African-American driver.
Her authorization bowl — “Sparky8” — is a appellation from her years at Brother André Catholic Aerial Academy in Markham. The dejected butterfly boom on her larboard accept brand and an angel of the moon and the stars active on her lower aback are additionally aerial academy relics.
“Why not attending at the moon aback you are attractive at the moon?” she says with a smirk.
The van, with a bulk tag of about $25,000, bulk her added than $80,000 afterwards accessibility modifications were installed to board her electric wheelchair. Her 10-year, annual accommodation payments boilerplate about $941 a month, an bulk that charge be paid until 2022. Now that the assurance has run out, her anniversary costs will escalate.
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But the van is Michelle’s life-line.
Her aboriginal stop is about consistently Starbucks drive-thru for a venti Caramel Frappuccino “no aerated cream, added drizzle” or Tim Hortons for a ample S’mores Iced Capp.
Michelle frowns as she pulls into Costco and looks for a wheelchair parking spot. The distinctively appointed spaces generally don’t assignment for her van, which requires at atomic bristles metres of approval for the electric wheelchair access that extends out the right-hand sliding aperture at the advance of a button on her keychain. As a result, she parks in a approved atom at the far end of the lot to abstain accepting boxed in.
As she searches for a accord on artificial cups for a assignment pot-luck, she zips by abashed shoppers in her electric wheelchair barking “careful now” in a “don’t blend with me” voice.
“People aloof don’t attending area they are going,” she says. “And I abhorrence it aback bodies see addition in a wheelchair and aloof accept you charge help.”
Michelle smiles in the check-out band area clerks accost her by name.
Growing up amidst hospital routines, rules and regulations accept accustomed Michelle an intense, if not extreme, account for authority, acquaintance and aegis of claimed advice in both her able and clandestine life.
Punctuality and attention are additionally touchstones. “I’d rather be an hour aboriginal than a minute late,” she says anecdotic how she allows 90 account for the 30-minute drive to work.
“Wheelchair breakdowns, accessibility access glitches and adversity award wheelchair parking spots. Accepting a affliction takes time,” she says wryly.
* * *
Lyn has spent added than three decades affronted for her earlier child’s appropriate to animate a accustomed life. While adopting two adolescent boys, she pushed for Michelle to leave the hospital with a assistant so she could appear academy with her peers. She insisted her babe accompany the academy choir, become a Brownie and a Girl Guide, booty taekwondo, go to summer affected and go on ancestors vacations.
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When Michelle became a adolescent adult, Lyn insisted her babe assignment part-time and appear academy area Michelle lived in abode and abstruse to drive.
Michelle credits her mother for her affronted independence.
But her years of hospital activity and Lyn’s connected advancement accept artificial a difficult mother-daughter relationship.
“My mom and I both accept altered account about how I should be administering myself,” Michelle says diplomatically.
Strong-willed and acutely private, Michelle refuses to acquaint her mother to her boyfriend, a man with spastic bookish attached she has anachronous for added than two years.
And she is affronted by Lyn’s ache with suctioning.
Because Michelle can’t cough, she carries a carriageable medical exhaustion army to the aback of her wheelchair that sucks the fungus from her lungs through a bright attenuated catheter. Aback she sticks the catheter into her lungs through a tracheotomy tube in her neck, the apparatus whirrs and makes loud slurping noises.
“I assimilation 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, aback she assuredly confused into the ancestors home, Michelle was affronted Lyn affected her to leave her wheelchair in the barn and airing or use her walker.
“She anticipation it was bigger for me. Which of advance it was,” Michelle concedes.
Lyn loves her daughter. But she admits Michelle is sometimes adamantine to like.
“Michelle’s point of appearance is f-you. I’m disabled. Get over it,” Lyn says.
She frets about her daughter’s hygiene and diet. “I acquisition it adamantine to go to her abode and see accoutrements of potato chips and bales of Mr. Noodle everywhere.”
“Michelle feels I accept never accustomed her disability,” Lyn says. “And she is right. I’ve never had the affluence of activity sad for my babe because I’ve been so active fighting. I’ve consistently been the difficult one. I had to be. Because activity apologetic for Michelle was never activity to get her area she bare to go.”
But Lyn knows she has to let go.
“Michelle is an adult. I accept to let her animate her life. We all accept to let her animate her life. And that is what this action is all about.”
“Hey there, whatcha accomplishing for dinner?” Michelle texts.
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“Call me — easier that way.”
Michelle’s dad Werner, 60, a blooming and able-bodied auto artisan who came to Canada from Germany aback he was 18, suggests they accommodated for banquet at The Keg at 10 p.m. on a Tuesday night.
As generally happens aback couples accept a alarmingly ill child, Werner and Lyn’s alliance burst beneath the accent of Michelle’s alarming bearing and a consecutive bootless medical abuse lawsuit. But as Werner is quick to point out “we are all accompany now.”
“Your mother deserves all the acclaim for accepting you area you are at. It is all your mother,” he tells Michelle as he abode into his adjustment of Baseball Top Sirloin. “She was consistently there for you. She is a actual able woman . . . Me? I’m aloof the banana relief.”
The restaurant rings with Michelle’s characteristic cackle as Werner recounts the time he took her to summer camp, collection assimilate the artery accept and told her the babble from the boom band was a helicopter ambit overhead.
“I fabricated you look,” he jokes.
Werner pulls out his cellphone to allotment photos of Michelle in a bikini, boot in the gay pride array and benumbed on the aback of his atramentous Harley Davidson motorcycle.
Michelle is still bedlam aback Werner mentions he and his accomplice accept aloof abutting Bare Oaks Ancestors Naturist Park, a bounded nudist colony.
“Maybe you appetite to accompany too,” he suggests.
“Could I booty my wheelchair?” she shoots back.
“I can never say no to you,” her ancestor replies. “Except aback you ask for a Ferrari.”
Michelle’s youngest brother, Dane, 30, runs a tow barter aggregation and is generally about her father’s Markham auto shop. “I apperceive he will consistently be there if I charge him, abnormally if my van break bottomward on the road,” she smiles.
But she is abutting in both age and spirit to brother Ryan, 33, an electrical engineer, currently belief dentistry in Australia and about to administer to medical school.
“When I see Michelle I don’t see her disability,” he says over Facetime from Brisbane. “She has never been authentic by her affliction and has never asked for any handouts.”
Ryan, the appeaser in the family, struggles to call his annoyance over his sister’s battles with bureaucracy.
“What I would achievement for Michelle is to see her be accurate by a affairs that gives her a affronted adventitious at continuing to advance a accustomed activity in the face of amazing circumstances,” he adds. “A affairs that covers her basal medical needs afterwards all the altercation of amaranthine paperwork and red tape.”
Disability rights advocate Pooran, is affronted by Michelle’s struggles with ODSP.
“This connected breeze of paperwork — the ecology and acquiescence requirements — has had a adverse aftereffect on her physically, emotionally and psychologically. And it has to stop,” he says.
For added than two decades, Pooran and added affliction advocates accept been advancement Queen’s Park to affluence the arduous advertisement requirements and austere assets and asset rules that administer ODSP. He is accompanying Michelle and Lyn to a affair with bigoted admiral aboriginal abutting ages to altercate her case.
Although Pooran acknowledges Michelle is somewhat different — few with her akin of affliction assignment abounding time — her acquaintance highlights the botheration best bodies on amusing abetment face aback they try to assignment or accept assets from added sources. Added than 900,000 Ontarians await on amusing assistance, including added than 490,000 on ODSP. About 10 per cent of individuals accepting ODSP accept application income.
It is a key affair Association and Amusing Services Minister Helena Jaczek asked a bigoted animate accumulation to abode aftermost summer as allotment of a analysis of Ontario’s assets aegis system. The group’s 10-year adapt for reform, is accustomed in October.
In the meantime, a admiral agent said the government has already added the bulk individuals and families can abstract from their balance for disability-work accompanying costs from $300 to $1,000 a month.
The admiral is additionally planning to affluence the accountability of anniversary assets and bulk advertisement by acceptance bodies to abide annal electronically.
“We accept it can be inconvenient, arduous and at times a arresting action for individuals,” said Kristen Tedesco. “We apperceive we accept added assignment to do and we attending advanced to the recommendations from the Assets Aegis Animate Accumulation in adjustment to added advance amusing abetment programs in Ontario.”
* * *
When the Kungls absent their medical abuse accusation in 1989, it was a crushing draft to Michelle’s banking future.
As the adjudicator warned in his ruling: “I cannot advice but feel that the law has bootless the babyish plaintiff Michelle. Association charge not abort her.”
The words answer as Lyn continues to action for her developed child.
“Our association should be attractive afterwards disabled people,” she says. “Our programs should be attractive afterwards Michelle’s medical expenses. If she was not working, it would all be covered. It doesn’t accomplish any sense.”
Lyn confesses she apprenticed doctors to booty her severely-injured babyish off life-support.
“I can acquaint you there were times aback I admired for the affliction of watching Michelle’s attempt to breathe to end,” she says.
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“She is a woman now. But the attempt to accept a activity — a activity that you and I booty for accepted — has consistently been above her reach,” she continues. “This is the affliction that I allotment with my adolescent who lives.”
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