Program allows people with disabilities to retain precious independence

Unique provincial funding program enables those with physical disabilities to hire their own attendants.

Thestar.com
Dec. 8, 2016
By Laurie Monsebraaten

At 73, retired developmental psychologist Audrey King leads a rich and fulfilling life.

She travels, attends a book club, chairs committees at her local church and shares her expertise as an advocate and guest speaker at professional gatherings.

A polio survivor who hasn’t been able to use her legs or arms since she was a child, King has also spent part of her retirement years caring for her aging mother, Maisie, who died in 2012, just shy of her 101st birthday.

King was able to keep Maisie at home in the Don Mills-area condo they shared thanks to an innovative provincial program that allows people with physical disabilities to hire their own personal attendants to help with dressing, grooming, bathing and other activities of daily life.

A recent funding boost will allow more people like King to live independently.

“For most of my professional life, I was the breadwinner while my mother kept the household going, got me up in the morning and looked after the meals,” King says.

“Suddenly, the roles were reversed.”

The direct funding program - which was just being introduced in 1995 when her mother’s health began to deteriorate - allowed King to hire her own personal attendants, so that she could co-ordinate home care and other supports to meet Maisie’s medical needs.

“My mother had a much better quality of life living with me - at a fraction of the cost of a nursing home,” King says. “And look how long she lived.”

Even though she sometimes wondered if her mother should be in a nursing home, King couldn’t bear the thought of moving Maisie from her familiar surroundings.

“I couldn’t do it. In her confused state, I would never, ever want her to feel abandoned,” King says. “After all, she never abandoned me.”

Without direct funding to help her manage her own needs, King says it would have been impossible to care for her mother.

Managed by Toronto’s Centre for Independent Living, the direct funding program is now in its 22nd year and serves about 850 people with physical disabilities across the province. About 400 people have inquired about funding and more than 100 are on the wait list.

An additional $5 million in provincial health ministry funding this fall will expand the annual budget to $43 million and extend the program to another 150 people. By March 2018, more than 1,000 people will be part of the program.

“We are tremendously proud of this work and the invaluable support it provides individuals, many of whom would otherwise have to move to care facilities, and not be able to stay in their homes and communities,” says Susan Fitzpatrick, CEO of the Toronto Central Local Health Integration Network (LHIN) which oversees the funding for the health ministry.

Unlike personal support care givers provided by an agency or a Community Care Access Centre, direct funding allows people with a physical disability to become the employer and manage their own attendants.

Prospective “self-managers,” as they are called, are interviewed by a panel of three people who assess their readiness as an employer to meet the obligations of the Employment Standards Act. Self-managers negotiate a budget with the centre, manage their attendant services and have a back-up plan in case an attendant is sick or otherwise unable to show up for work.

They determine the number of hours they need and pay their attendants based on the ministry mandated hourly wages of between $16.50 and $19.

The average self-manager uses just under five hours of attendant care a day and the current average monthly budget is about $4,200, including money for wages, benefits, employer taxes, postage, bookkeeping and miscellaneous costs, says program co-ordinator Leanne Larmondin.

But there is a broad range. Some who need alternate days or just several shifts a week, use as little as eight or nine hours a week while a person on a ventilator may need as much as 24 hours a day. Those with physical disabilities are eligible from age 16 and the oldest personal manager is in her 90s.

King loves the program because there are “no agency ‘policies and procedures’ to interfere with the assistance you need or how it happens.”

“The attendant can go with you to a cottage, on vacation, to help with shopping or trying on clothes in a store,” she says. “They can take you to appointments, help you get your mail, use the phone, organize your files, whatever your daily needs might be,” she says.

“As an employer, the accountability and responsibility between you and your attendant or attendants is direct. There is no middle manager off-site,” she says. “As a result, you respect each other and care about each other more.”

It also fosters longer-term commitments, notes King, whose weekend attendant has been working for her for 16 years. Her weekday attendant was with her from 1995 until she retired two years ago.

For Derren Whiteman, 45, the program allowed him to move out of his parents’ home and into his own condo three years ago.

“To me, it is freedom,” says the technical writer and website designer who became a quadriplegic after a car accident when he was almost 17.

Since agency attendants don’t work overnight, Whiteman says he could never have lived on his own without the flexibility of the program.

Now, if he gets a cold or is otherwise unwell - which he says rarely happens - his attendant can stay overnight and help clear his airways, if necessary.

“It’s really changed my life so much for the better,” he says.

About 10 years ago the program allowed a GTA-area father who was diagnosed with ALS just after his wife died to stay home and look after his two boys. He was worried that if he went into long-term care, his kids, who were entering their teens, would have been orphaned and put into foster care, says the centre’s associate director Ing Wong-Ward, who has spinal muscular atrophy and uses the direct funding program herself.

“This man got on the program not knowing what the outcome would be. But we were recently sent a photo of him at his son’s wedding,” Wong-Ward says. “He is on a ventilator. He cannot move most of his body. But he has survived long enough to see his oldest child get married. And we have every reason to believe that he will be around to see the birth of his first grandchild.”

More recently, the program enrolled a participant who came out as transgender male to female and has been able to hire people she knows who are trans-friendly.

“When people are seeing your body naked, you don’t want to be judged. If someone is imposed on you from an agency, even if someone is trained and professional, it’s still the subtleties that are really tricky,” Wong-Ward notes.

The program has even funded a First Nations man in Northern Ontario who used an attendant to help him prepare game in the traditional way in keeping with his culture, she adds.

As advocates mark the United Nations International Day of Persons with a Disability this month, King and others hope the relatively small direct funding program continues to expand and change perceptions.

“There is this sense that people with disabilities need to be taken care of and I hate that,” King says. “The program helps us take care of ourselves. The program gives us the power.

“Every other adult is in control of their own lives,” she says. “This program helps put people with disabilities in the driver’s seat.”