Living with Cerebral Palsy was at times difficult and yet it has allowed.me to live a fulfilling life and to purse my dreams!
What is Cerebral Palsy? Cerebral Palsy is a condition that can affect people in different ways. For some, it can affect their speech and motor control skills and for others it can affect their balance and perception. These things are affected because certain brain cells, controlling one's motor, speaking, and balance, don't receive enough oxygen. This can occur during birth or while a person is unconscious due to a serious accident. If no oxygen is received, the cells are damaged. Once they are damaged, they cannot be restored. So, people with Cerebral Palsy will always have Cerebral Palsy.
For information about Cerebral Palsy, go to the Ontario Federation for Cerebral Palsy website, www.ofcp.on.ca
As a small child, I wished that it was possible for me to walk without a walker (which I do now) or speak without having people asking me to repeat myself or without drooling. I would imagine myself running in the street with the other kids or riding a bike to the corner store. Knowing that I could not do these things made feel very sad. It felt as though, I was missing out. Sitting in my wheelchair on my front lawn watching the kids play, I couldn’t help wishing to be “normal”.
For my parents, accepting that their first-born child had a disability was difficult. Growing-up in a small village, they had not been around a person with a disability. In Greece, children who were born with disabilities were often locked away in institutions. Never to be seen or heard from again.
People with disabilities were seen as being “different” or “not normal”, certainly not seen as productive members of society. So, when my Mom and Dad were confronted with the issue of their own child being "different", they don't know how to deal with it.
One of the ways that helped me and my family embrace my disability was starting to focus on my Abilities!
At the age 18, I took a part time job at the Ontario Science Centre as an Information Clerk and worked alternate weekends for 5 years. As part my co-op placement at Seneca College, I worked at the Centre for Independent Living in Toronto (CILT) for a semester then volunteered for a year and was hired on as the Youth Program Coordinator from 2000 to 2008.
In my mid 20ties, while working at CILT, I moved into an apartment that provided 24 –hour attendant services. Living on my own had been dream of mine since I was 8 years old. It was fun having my own place, shopping for my self, paying my bills and having the ability to make decisions.
Today, I still live on my own, participate on committees that are working to make positive changes for people living with disabilities and I also enjoy travelling.
Focusing on my Abilities and pursuing my Dreams, made it easier to embrace my disability!
Attendant Services
The Direct Funding (Attendant Services) Program is a government funded program that provides money/funds to people with disabilities who want to hire and manage their own Personal Support Workers (PSW)/Attendants. The program is run through the Centre for Independent Living in Toronto (CILT). For more information visit www.cilt.ca
Attendant Services is services that people with disabilities use to manage their own care/needs, increasing one’s Independence. Attendants provide assistance with activities of daily living which could include, dressing, bathing, meal preparation and much more. For each person, the assistance required differs.
A Personal Support Worker/Attendant is an extension of a person’s leg and arms. Their role is to Support or Assistance the individual with a disability to live a productive life.
Directing one’s care is a term used to explain that the person receiving assistance is “in charge”. When the attendant comes to the person’s home, she/he “directs” the attendant to help with what needs to be done, for example; prepare meals, help with personal care and/or assistant with grocery shopping.
People with disabilities who live in accessible housing receive support from Personal Support Worker/Attendants who work for the agency usually located within the building. This is known as 24 – hour Attendant Services. Those living at home with family can also receive Attendant Services through Outreach Services or Direct Funding.
I have been on the Direct Funding (DF)) Program for over four years and it has enhanced the quality of my life a great deal. I am able to hire the attendant and have assistance for several hours a day.
Before being on DF, I received Attendant Services from the place where I lived. The attendants worked for an agency within the building and provided assistance to about 10 to 20 people a day. When the attendants came to assist me, they could only stay for an half an hour and helped me with my basic needs.
Getting older, I seem to need more assistance and being on Direct Funding allows me the opportunity to receive the support required to live a productive life.
Individuals who are on the DF program are referred to as Self Managers. Being a Self Manager is big responsibility. It includes, interviewing and hiring the attendants, establishing guidelines, making sure their pay is received on time and registering with WISB. I have hired a bookkeeper to handle the pay roll and to do the quarterly reports. It is my responsibility to look over EVERYTHING.
Having the ability to have support for a number of hours allows me more independence and a little more spontaneous. If I need to go to the store to pick up milk, I don’t have to wait until the next day for somebody to come in and help me. Also, if you are fortunate enough to have the same people working for you for a long time, a trusting relationship develops. It is comforting knowing that the same person is coming into home everyday to assist you. A sense a loyalty is felt. If the attendant can’t come in one day, they call the other attendant to come in instead because they do not want to leave me without help for that day. They also start learning your routine. After a while, there’s no need to “direct” or tell them what do step by step. The attendants, or assistants as I like to refer them, know what needs to be done, without me telling them.
I am very lucky to have two wonderful ladies who work with me. They both understand their role as an attendant/assistant. They respect me as an employer and as an individual.
Being on the program gives me the opportunity to manage my life easier. I like to think of this way, if celebrities like Lindsay or Britney can have Assistants to help them manage things in their lives everyday, why can’t I!
Along with the Direct Funding Program, they are other types of Attendant Services available.
24 – Hour Attendants Services in a Supportive Housing
The attendant works for an agency in an apartment building and provide assistance to people living in the building.
Some apartment buildings that offer 24- hour Attendant Services include, Tobias House, Participation Apartment, Three Trilliums.
The Project Information Centre (PIC), a program at the Centre for Independent Living in Toronto has a list of which apartment buildings in Toronto, offer 24 –hour Attendant Services.
Outreach Attendant Services
The attendant works for an agency and come into people’s homes, workplace or school to provide them with assistance.
Some agencies that offer Outreach Attendant Services included, March of Dimes, PACE, Bellwoods Centre for Community Living.
You can also find more information about agencies that provide Outreach on the 211toronto.ca website, type in Outreach Attendant Services.
Direct Funding Attendant Services
Attendants are hired by the person receiving the assistance. The attendant works for the person and not for an agency.
You can be living in your own apartment or at your parents’ house.
There is a 10 year waiting list for the Direct Funding Program.
For more information on all the Attendant Services mentioned above call, the Centre for Independent Living in Toronto (CILT) at (416) 599-2458 or visit their website at www.cilt.ca
Through out my life, I have achieved many things. I graduated from college with a diploma in Social Work, have had a successful career working with youth and have lived on my own for over 10 years.
I see myself as a very smart, outgoing and funny woman. I am an independent person who does require some assistance and who can also manage many things on my own. Yet, when I am around people without disabilities (friends and family excluded) sometimes I feel totally disabled.
I was born with Cerebral Palsy and it has affected my speech. If a person meets me for the first time, they may think I have an intellectual disability as well as a physical one. I don't. My disability is physical. It has affects my speech a little bit and my motor skills. I am aware that my voice sounds hoarse all the time and that there are times when it difficult to understand me. If given a chance, people would see that I can and do hold a conversation very well.
I do have the ability to walk and do use a scooter to get around faster/easier. People seem surprised to see me walking.
Within the disability community, sometimes it feels like I don't fit in either.
Perhaps the best way to explain my feelings is to say it like this: The feelings I have about being caught between worlds could be similar to the feelings a person who is interracial may have. Feeling as though they belong in both races and yet when she/he is among one group, they are not sure if they are accepted.
I hope by my sharing my thoughts and feelings, people are not offended. I am proud to be a person living with a disability and all the work I have done within our community. I am not sure what these feelings of self doubt are really about. Maybe it's about me, trying to find my way and purpose in this crazy world we live in. And don't we all struggle with that once or twice in our life time?
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Wheel Trans is a division of the Toronto Transit Commission (TTC). It is a door to door service that people with disabilities and the elder use to get around the GTA. People who use Wheel Trans pay the regular TTC fare $2.75 each way or they can pay with TTC tickets ($22.50 for 10 tickets) or a monthly Metro Pass ($110.00). |
To learn more about Wheel Trans go this link:
http://www.toronto.ca/ttc/special.htm
Wheel Trans must sound like an ideal transportation service. A bus picks you up in front of your door and drops you off in front of another door. Sounds Great! Especially to those who have to stand at a bus stop on a freezing cold winter's day or on a scorching hot summer's day! Or for somebody who spends hours waiting in traffic.
I have used Wheel Trans for over 20 years. Let me tell you, it is not a Great Service at all!
One thing that is really frustrated for people who use Wheel Trans is the constant waiting around for a bus. A few weeks ago, I waited 3 hours for a bus to pick me up from a location.
On Friday January 18, I had a meeting at 12 noon. I called Wheel Trans at 7 am on Thursday morning to request or "book" bus for Friday. When booking a bus to go anyway, people who use the service need to call the morning before. So, on Thursday morning, I called to book a bus for Friday asking to be dropped off at the location of the meeting at 10:30 am. I called on Friday morning at 7:30 am to confirm my times (I also checked the times Thursday evening) and was told my pick from home was scheduled for 10:00am and my returning ride was at 2:30pm.
Wheel Trans has a policy that the customer (me) must be ready and waiting at the door 5 minutes before the vehicle is suppose to arrive. I was waiting in the lobby of my building from 9:55 am until 11:15am. My scheduled pick up time was at 10:00 am and the bus came at 11:15 am. I arrived at my meeting at exact 12 noon.
My return pick up was scheduled for 2:30pm. Melissa, my assistant and I went to the door to wait at 2:25 pm. The bus scheduled for 2:30 pm did not arrive until 5:30pm.
Another Wheel Trans policy is that you have to allow a 20 minute "lee way" time before you can call to check on your ride. Melissa called Wheel Trans at 2:50pm to ask how much longer the bus will be and was told another 10 minutes.
For 2 hours from 3:00pm until 5:00 pm, Melissa called every 20 minutes and was told the same thing, "the bus should be there in 10 minutes". At one point, we were told that according to the schedule they had, I didn't even have a scheduled ride home at all for that day. Melissa explained that I had checked that very morning and was told that there was a bus scheduled for 2:30pm. A Wheel Trans rep on the phone said "yes there was, but there was a computer error and the bus was rescheduled for 3:00 pm." This information was told to us at 4:00 pm. And still no bus had arrived.
The bus arrived at 5:30pm and the scheduled pick up time was 2:30pm.
Another thing that is frustrating about Wheel Trans is the "5 minute wait" Policy. If a bus arrives to pick a person up and she/he is not quite ready, the driver is only suppose to wait 5 minutes and then they can leave. This also applies if/when the bus arrives late. If a customer does happen to miss their ride the chances of another bus coming to pick them up is very slim. You may have to wait another 2 hours for another bus to show up.
Also, when one is waiting for a bus, you have to stay by the door and wait, even if it's for 3 hours. Going to the bathroom is out of the question. If the bus comes and the person is not at the door waiting, the driver can leave after waiting only 5 minutes. Meanwhile, the person may have been waiting for 1 hour or more.
Many, many many, complaints have been made by many of us who use the Service.
Letters have written to the President of Wheel Trans and to Members of Parliament. Public forums have been held and numerous phone calls have been made to Wheel Trans Customer Service. Nothing changes!
Sometimes I feel that the "Powers that Be" at Wheel Trans feel that people who use the service, should be grateful. After all, all "we" do is go to the mall and to special programs or medical appointments. So what, if you have to wait for a bus, at least we are getting out!
I would like to inform the "Powers that Be" at Wheel Trans and at the TTC of this important fact: There is a vast majority of people with disabilities who do work, paid work and attend college/university. They rely on Wheel Trans to get to these places and so many times they are sitting waiting for a bus that could be an hour or more late. . For those who do go to the mall or a special program, for that person it is just as important as going to work or to school.
People who use the "regular" TTC buses don't have to wait more than10 minutes for a bus at a bus stop. Why do people who use Wheel Trans have to wait for up to a 1 hour or more to go where ever they need to or want to go?
Another important fact that Wheel Trans needs to think about, when a bus is late it does not just on effect the customer, it can and does effect others in our lives. For example, our support staff, friends and family. I was at a friend's house one afternoon and she received an emergency call 10 minutes before my pick up. The bus was an hour late. My friend didn't feel comfortable leaving me alone to wait for a bus.
My attendant, who works until 3pm and then picks up her son at daycare, has had to make other arrangements for her child, while she waits with me for a bus to pick me up. She worries I may be strained.
When will Wheel Trans start realizing that when the buses are running late up to 1, 2 or 3 hours, it affects many? The really is question when will they start to CARE!?