Editors note: The following story originally ran in the Feb. 14 edition on A11 but was not in it’s entirety. The Star and Times apologizes for this error.
There is a definite need for more support and advocates for people with disabilities. Valley resident, Evelyn Yelinek, knows all too well about the needs people with disabilities have and recently, she’s been appointed to the Manitoba Intellectual Disability Advisory Council to share her experience and advocacy on certain topics.
“There was a call for interest on the Manitoba government website and I applied,” said Yelinek. “I first noticed that some people were being treated disrespectfully when I was in Grade 6. I recall telling a teacher that he was being a bully. This resulted in being sent to the office. I told the principal what happened. I was thanked and was asked to report back if I felt things like this happened again, but I should not address the teacher myself because then I was the one being disrespectful. Being the cheeky child that I was, my response was that maybe the teacher should be a better role model.
“I have a cousin who has Down Syndrome. When she came to visit, she was not allowed to play with us; she could only sit on the couch and look at books. I thought that she had a very sad life. When I asked my aunt why I was told it was not safe for her because she was very fragile.
“I also had an uncle who lived with us for a while,” said Yelinek. “He wasn’t able to care for himself and eventually he was placed at MDC because his behaviours made it unsafe for him and us. Then I became a mom to a couple of great guys. You really don’t know what love is until you have a child. My guys were born three and a half months early and I was determined to make their world very much unlike the one I witnessed as a young girl.”
Yelinek’s desire to advocate for fairness for others really developed through her own experiences as a mother.
“When I was a new mom, I was made to feel like I did something wrong that caused the early births,” said Yelinek. “The social worker constantly threatened my rights as a parent. She said that she was an educated woman and didn’t feel that she could care for the boys, so what would make me think I could? I felt she was judging me, and I was also feeling that way by some friends and family too.
“Every birthmark and bruise had to be explained. Little kids do get bumps and bruises. Add being blind to the mix, any educated person should understand that they too would get bumps and bruises.
“Then there were issues getting funding for support workers at daycare; issues getting funding for EAs; very little funding was available for respite because we lived in a rural area; the guys were not allowed to go on many field trips because of lack of support staff; while EAs came and went,” said Yelinek.
“Then comes adulthood and needing to rely on government assistance. This program was designed to help people for a short time until they can get back on their feet. It is not acceptable in any way to subject already vulnerable adults to a life of poverty in which the rent budget is so little that safe housing is very challenging, if not impossible to find. Some families have to have their adult children placed in homes outside their home community because of a lack of proper homes.
“These are just some of my experiences. People wonder why families of people with disabilities have a hard time trusting,” said Yelinek. “I never want any other mom to feel the way I did.”
Along Yelinek’s personal journey, she met some incredible people who helped her along the way. It was through their guidance that she found the inspiration to keep advocating for people with disabilities and to demand fairness for them on many issues.
“I have met some wonderful staff and friends along the way,” said Yelinek. “Dr. Rajani, a pediatrician, and Deb Ramsay, a mom from the Parents of Premature Babies club, were the first two people who provided amazing support. Deb and I are still close friends. Lois Paske, OT/PT from CNIB, told me that I was a great mom; she empowered me to stand up to the social worker. She and Dr. Rajani wrote letters on my behalf to that social worker.
“Then I moved to the Valley and met some wonderful workers here. Iris Jonsson, a Children’s Disability worker, heard my story and took me under her wing. I started working for the Department of Families and continued to be mentored by Lee Greig and Donna-Jean Slack, who were program managers, to become the best worker I could be. I was often matched up to work with families who had special needs kids; some were children and some were adults.
“At the Department of Families, I met a wonderful man named Phil Boguski, who was the Vocational Rehab Worker,” said Yelinek. “He provided so much guidance to me as a worker and a mom. I volunteered on the Association for Community Living board and met many wonderful people who attended the day program. My fellow board members were passionate about making this world our children are part of life, a much better place.
“Volunteering on the Community Mental Health board provided another opportunity to meet some pretty great citizens and see life from a different perspective. I’m now on the Innovative Life Options board and again have been blessed to meet so many wonderful men and women.”
Advocating for a loved one who has disabilities is a very challenging and draining task; one that makes you feel like the odds are greatly stacked against you. Yelinek’s faith and support from her immediate family, helped her to continue the good fight.
“Even though I have been so blessed, the struggle was real, the hurdles were huge and many times life was discouraging and heartbreaking,” said Yelinek. “This should never be the case. I am so glad that my parents raised me in a Christian home and taught me not to be afraid to speak out when things are just not right. I’m so glad my husband encouraged me to grow in my faith and continue to speak out. One of my favourite Bible verses that inspires me to keep going is ‘through him, all things are possible’. This is the verse I relied on upon through all those difficult years.
“My guys are 38 now. Christopher receives financial assistance, but no other support. Devon hires his own staff using provincial funds. Devon is part of a wonderful organization called In the Company of Friends (ICOF), whose governing board is Innovative Life Options. ICOF refer to people they serve as employers. These men and women, with the guidance of a group of people of their choosing, hire their own staff, choose where to live, what to eat, and what activities they want to enjoy. In other words, these ladies and gentlemen live with dignity, are respected, and know exactly what it means to have full citizenship. I wish more people with an intellectual disability would have an opportunity to choose ICOF.”
Yelinek feels the new changes being made will better support people who live with disabilities and that this government has given people ample opportunity to engage in the dialogue on these issues.
“I’m so hopeful of all the new changes our government is making to support people who live with disabilities,” said Yelinek. “The development of this advisory council and the fact that Heidi Wurmann, the Assistant Deputy Minister with the Department of Families, will chair it, demonstrates this government’s seriousness about making changes to current policies. The eight-person Advisory Council members were strategically selected to ensure the team is made up of people who bring many years of hands-on real-life experiences from a variety of perspectives.
“It’s so important to speak out whenever there is an opportunity provided and even when there isn’t. This government is providing its citizens with different opportunities to speak out. For example, we have EngageMB surveys and in 2022, there were many consultations about the Employment and Income Assistance program as it relates to people who live with a disability. There have been many good first steps made to the EIA program because of government has been listening to front-line staff and the recipients of this support. The Advisory Council will be another tool our government decision-makers can use to ensure the development of the best policies, procedures and programs to support Manitoban citizens who live with an intellectual disability.”
There are some issues that people with disabilities face that Yelinek would like to see addressed in the near future.
“Some of the areas that need improving for people with disabilities are fair wages for support staff, which would mean less staff turnover and more people interested in being a support worker as a career,” said Yelinek. “Fair means higher pay based on the types of support being provided and employee benefits. The department recently developed a very fair assessment tool that could be used as a guideline to develop such a wage scale.
“There needs to be more affordable housing and higher EIA rental rates. As well as promoting the benefits of hiring a person who has a disability and continuing to provide employers with incentives and supports to do so
“One change that could help would be to make the EIA disability supports a pension,” said Yelinek. “This way the person could marry a person with a higher income without losing a way to support themselves. Eliminate any fees related to Public Trustee services would greatly help too.”
Yelinek will meet with members of the Manitoba Intellectual Disability Advisory Council this month and looks forward to this new opportunity to advocate.
“The whole team will meet minimally three times a year, however, my current understanding is that there will be sub-committees formed who will meet as necessary,” said Yelinek. “My term on this committee is for two years. I would like to see all Manitobans live their best life, live with dignity, be respected and have a voice in every part of their life. I look forward to our first meeting in February.”