The Journey Home

By Morag Beaumont

For Louis Heroux, the expression "there’s no place like home" has special meaning. He once thought that he would never have a "home" again. Two years ago, Louis was involved in a motor accident in which he sustained a serious head injury. He spent three months in hospital in Ontario and was then sent to a rehabilitation centre in Pennsylvania to receive chronic care. The dollar cost to our medical system was astronomical and the emotional cost to Louis and his family was immeasurable.

People like Louis, who are sent to rehabilitation hospitals in the United States because there are no Canadian alternatives, cost our healthcare system $550,000 each per year. Compare this with the $400,000 per year the Ontario March of Dimes spends to provide services for Louis and 15 other people in a Support Services Living Units (SSLU) Program in Mississauga. It does not take a mathematician to recognize the savings this type of program can offer to our overburdened healthcare system. Sixteen persons with disabilities are receiving support for $150,000 less than it cost for one to receive chronic care services outside of Canada.

Louis’ rehabilitation after the accident was complicated by the fact that he has myotonic dystrophy, a hereditary disease which causes muscle atrophy. He requires a tracheostomy in his throat which prevents him from talking, and a gastronomy tube in his stomach through which he obtains nourishment.

On completion of his rehabilitation program Louis’ parents were unable to find a suitable facility for him in Ontario and had to send him to Pennsylvania. This arrangement proved a great hardship. They are both in their 70s, with health concerns of their own. Every Wednesday they would travel to visit him in Pennsylvania for a couple of days and then rush home to assist two of their daughters, who also have myotonic dystrophy. Each week when his parents left Louis would weep, thinking he would never see the day when he could come home, have some independence, and be with his family again.

Mr. and Mrs. Heroux fought hard to find a way to bring their son home, pursuing every possible channel. In the end, their persistence was rewarded. In June of 1992 they contacted the Ontario March of Dimes and learned about the Support Services Living Units in the Peel Region. This program offers attendant services, including bowel, bladder and tracheostomy care, to residents in the accessible units within the Peel Non-Profit Housing. Louis’ parents wrote letters to government ministries and finally in October 1992 an Ontario March of Dimes representative, Louis’ rehabilitation counsellor, a psychologist from Hamilton’s Chedoke Hospital and three family members met at the Pennsylvania centre to see if repatriation would be possible. On November 2nd, Louis came back to Canada. Although he had to spend a couple of months in West Park Hospital in Toronto, Louis was on the road to independence.

By Christmas, Louis was living in his own apartment in Mississauga where attendants were available to him on an "as-required" basis. West Park Hospital respiratory therapists trained the Ontario March of Dimes attendants to perform the suctioning of his tracheostomy, and the nursing department demonstrated the method used to assist him with his gastronomy tube feedings.

When Louis was asked about his new lifestyle, he spelled out on his Epson board, "I like Canada better than the U.S.A. When you are far away from home, eventually your friends and even some family members forget about you."

An avid traveller, Louis has in the past journeyed throughout the Far East and the south Pacific, visiting Expo in Japan and working in Australia for a year. Now he has plans for another journey: back to Oakville, his home for 35 years. The Ontario March of Dimes is building another SSLU there and Louis is hoping to obtain one of these apartments. With his newfound independence -- able to do what he wants, whenever he wants -- Louis says, "There certainly is no place like home."

(Morag Beaumont is an Independent Living Manager in the Peel Region of the Ontario March of Dimes.)


ANNUAL GENERAL MEETING

Comedian Gord Paynter and Board member Mrs. Sandi Bell will be featured speakers at the first joint Annual General Meeting of the Ontario March of Dimes and the Stroke Recovery Association of Ontario. The theme for this year’s meeting is "Quality of Life for Persons with Disabilities." Workshops will include such topics as: Sexuality -- It’s Okay; The Choice is Yours: Leisure and Travel Opportunities; Care for the Caregiver; and Sharing the Challenge Through Self Help Groups. The meeting will take place at Parkway Suites Hotel, 3530 Schmon Parkway, Thorold, Ontario on Saturday, September 11. Volunteers from both organizations will be honoured at the Annual Awards Presentations following a dinner on Friday, September 10. For more information, please contact Shirley Teolis at Ontario March of Dimes, (416) 425-0501, or Gwen Crown at the Stroke Recovery Association of Ontario, (416) 493-9990.