Breaking through barriers for workers who have children with special needs.

Special Needs Project: Celebrating 20 Years!

Back in 2005 our family found out about the Special Needs Project. Having almost 3 year old triplets at the time, each of them having a different diagnosis, the Special Needs Project gave us a sense of relief when it came to some of the extra cost encountered with each of their needs. Now almost 11 years later the children are excelling each at their own pace thanks to the “extras” that we can do with our children and with the funding that we receive from the project. Dealing with diagnoses from autism to juvenile rheumatoid arthritis, severe asthma, social delays and learning challenges we’ve come across several different obstacles. Our advisor Janet is always willing and able to assist us with finding resources available in our community.

In the fall we will be transitioning to high school. Thankfully we will have the financial assistance of the project for another meaningful summer of programs and camps before this big milestone in their lives. The kids have grown up with the Special Needs Project. The ladies in the office get our updated pictures on a regular basis and they’ve become part of our circle of resources, people that we can count on and will always be there! We are ever so grateful for this monthly contribution and hope to see it continue through the next phase of the kids’ lives!

Letter Carrier

Windsor, ON

The story starts on July 2, 2015. My 13-year old son had no energy, and was listless and unhappy. He had suicidal thoughts.

So I took him to the hospital and, once there, the whole process started: medical examination, psychologist, social worker, youth psychiatrist and all kinds of specialists.

He did not go to school all year long, because he was scared of being bullied and all the stress that would cause him. He spent two months in Hôtel-Dieu du Sacré-Coeur hospital. As he had severe behavioural problems, he was placed in a youth centre. He has been there for a year. He is beginning to feel better because of his medication.

Diagnosis: personality disorder, ADHD, mixed anxiety disorder and tics, for example, he pulls out his hair, picks up everything and eats all the time.

In short, someone at work talked to me about the help I could get, and I called (the Special Needs Project). I would have liked to know about it sooner, but that’s how it is. The costs for youth centres are very high.

I only pay half and, with the medication, it costs me between $350 and $450/month. Imagine!

Letter Carrier

St-Brigitte-de-Laval, QC

Old Friends

Member Loreen Munro and her longtime advisor Shirley Mcguire talk about their relationship and the project

Shirley and Loreen have been talking on the phone for about seventeen years, but they only met in person recently.

“It was like meeting an old friend of the family,” says Loreen.

“I’ve talked to some families for fifteen or more years without ever meeting them,” says Shirley. “It’s a wonderful relationship because I’m able to, I think, assist them and find them resources for their kids, but you usually don’t get to meet face to face.”

Shirley started out as the Saskatchewan advisor for the Special Needs Project when it began in 1995. Now semi-retired, she is the Moving On advisor for Saskatchewan and Manitoba. Loreen’s son and daughter started with the Special Needs Project in 1999 and both are in Moving On, so Shirley has been her advisor the whole time.

“Being one boy and one girl they each needed different things,” says Loreen. “Shirley was always there with advice... she was someone who would listen and not judge. People would say, ‘Oh you have kids with disabilities?’ and then they wouldn’t really want to talk about it. But Shirley was always there, helping me through good times and bad times.”

Shirley is careful to respond that she isn’t just returning a compliment when she describes Loreen as a great mom who “works endlessly on behalf of her kids. She’s always looking for new ideas and new initiatives to maximize everything she could do for them.”

Loreen says she’s found some ideas in Member-to-Member Connections and has shared some of the letters with her children over the years. “I think the kids felt better knowing there were other people like them.”

She has used the money she received from the project for many different activities for her son and daughter as they grew older and their needs changed—from summer camp to social activities to language programs. She says being part of the project allowed them to do more: “They might have just stayed at home playing video games or watching TV. Instead they got out and interacted with more people.”

Loreen’s son and daughter are both living at home. She’s currently using Moving On funding to pay for life skills coaching. “It’s nice that they can get together with people around their own age who can mentor them and show them things,” she says. “And I guess I feel better too, because when they go out I feel they’re safe.”

Shirley echoes the importance of going out: “You can’t have a world where everyone is the same,” she says.

“I hope that this project helps to put a better value on families and people with disabilities, because they’re so necessary to have in our society and I don’t think we look at that enough. I thank Loreen and her kids for just being part of our community.”

The Special Needs Project Over the Years

• 1989

  • A joint CUPW-Canada Post survey of the child care needs of postal workers finds that parents of children with special needs have the most challenges.

• 1991

  • CUPW negotiates a jointly administered child care fund with Canada Post (Appendix L of the collective agreement). The fund is capped at $2 million and the employer puts $200,000 into the fund every three months. The fund can be used for projects on child care services for postal worker families, information and research. However, management and the union have difficulty agreeing on any projects.

• 1995

  • CUPW negotiates sole administrative control of the Child Care Fund.

• 1996

  • Through the Child Care Fund, the union sponsors a study,In Our Way, that looks at the work- force barriers for parents of children with special needs. It is the first research of its kind in Canada and Québec. The study recommends that the union set up a pilot program for CUPW parents of children with special needs.

• February 1996

  • The union produces the Child Care Fund video, Juggling with Care, which contains segments about families who have children with special needs. The video discussion guide features sections on the stresses and workplace issues around having a child with special needs.

• Summer 1996

  • The union puts in place the 1996 Special Needs Summer Project, designed in collaboration with SpeciaLink: The National Centre for Child Care Inclusion. The pilot draws the participation of 105 members.

• Fall 1996

  • The pilot project becomes a permanent, year-round project intended to help reduce the financial, emotional and physical stresses of CUPW families of children with special needs. It is administered for CUPW by SpeciaLink.

• May 1997

  • Child Care Now!, CUPW's 5-day child care course, is held at Port Elgin for the first time. The course contains a component on children with special needs, and a significant number of course participants are parents who use the Special Needs Project. New understanding and strong connections are forged during the course by those who have children with special needs and other parents. This bonding occurs each subsequent time the course is held.

• June 1999

  • The Key to Caring, another video, features three of the union's child care projects, including the Special Needs Project.

• 1999-2000

  • The Public Service Alliance of Canada (PSAC), on behalf of its component, the Union of Postal Communications Employees (UPCE), negotiates a child care fund with Canada Post. UPCE-PSAC and CUPW sign an agreement that CUPW will administer the Child Care Fund. CUPW makes the Special Needs Project and other projects under the CUPW Child Care Fund accessible to UPCE members working for Canada Post.

The Special Needs Project has supported almost 1500 CUPW and UPCE-PSAC members since the project started.

The union introduces the Moving On Project to provide information, resources and financial support for families who have dependent adult sons and daughters with disabilities.

• 2000

  • The union prepares a package of educational material on what it's like to work and have
    a child with special needs. The package includes a poster and quiz, and is for locals to use on the shop floor.

• 2002

  • Family Place Resource Centre, a federally funded, non- profit organization, becomes
    the administrator of the Special Needs Project. A staff of three administers the day-to-day operations of the project out of an office in Baddeck, Nova Scotia.

  • The book, Moving Mountains: Work, Family and Children with Special Needs, is published and widely distributed. The book showcases the stories of families who are using the Special Needs Project.

  • CUPW wins the 2002-2003 ISO Families Award, given by the Quebec government's Council on the Status of Women, for the work the union is doing on the Child Care Fund to help parents balance work and family life.

• 2003

  • The union negotiates improvements to the Child Care Fund. The fund's coverage is expanded to include CUPW members with dependent adult sons and daughters with special needs, and members who provide primary residential and financial support for their grandchildren. The fund is capped at $2.5 million, with the employer's contribution increasing to $300,000 every three months.

  • The Special Needs Project wins the Rosemarie Popham Award. The award recognizes exceptional contributions made to advocacy and social policy development on behalf of children and families. The award is presented by Family Service Canada.

• 2005

  • The union introduces the Moving On Project to provide information, resources and financial support for families who have dependent adult sons and daughters with disabilities. The project helps families whose children with special needs are transitioning into adulthood, and who find that many programs or supports will no longer be available when their sons or daughters shift to adult services.

  • The union produces a new poster, Breaking through barriers, on the Special Needs and Moving On projects. The poster wins a Canadian Association of Labour Media (CALM) award.

  • CUPW negotiates access to the Child Care Fund and all of its projects for Rural and Suburban Mail Carriers in the RSMC collective agreement.

Almost 500 union members have been supported by the Moving On project since it began in 2005. 72% of the current Moving On members came from the Special Needs Project.

• 2006-2007

  • The Special Needs Project surpasses its first decade. The union negotiates cost-of-living increases to the Child Care Fund to ensure that the projects will continue to grow and be available to the members. By 2010, Canada Post will make quarterly deposits of $324,000 into the fund.

• 2008

  • A bilingual website was developed by the Child Care Resource Unit (CRRU) for our projects including new butterfly logo. Shortly after the website is expanded to include a listing and links to national and community resources. CUPW also developed Breaking Through Barriers - DVD highlighting the story of three postal workers who had young and adult children with disabilities.

  • Project staff and advisors inform parents about Registered Disability Savings Plan and Disability Tax Credits to ensure they are using all available government programs.

• 2012

  • Outreach to researchers, disability and labour organizations and postal workers is key work during this year.

    • Union’s Child Care Coordinator presents on Special Needs and Moving On projects in symposium at Work and Family Research Network- establishes an international working group on disability work and parenting

    • CUPW presents at international CRIMT conference in Montreal, presents research paper examining how innovative projects engage, support and enhance the lives of postal workers. titled “A Cherry on Top of a Sundae - small but good”.

    • Union develops new promotional materials and mails out a new brochure to the homes of all members

The Special Needs Project currently supports 362 members with 447 children. Sixty-nine members have 2 children in the project, 6 have 3 children and 1 has 5 children.

• 2013

  • Our unions use the child care fund to produce useful information to document the state of inclusion and a website with tools for parents to use in finding and understanding quality child care.

  • CRRU produces with funding from our Union’s child care fund a paper examining inclusion of young children with disabilities in regulated child care in Canada. A snapshot: Research, policy and practice

  • Findingqualitychildcare.ca is launched. It is a unique website to help parents find quality child care. It has a video that identifies inclusion as part of quality and links and help on “finding" inclusive care including questions to ask and a checklist. The video is in American Sign Language (ASL) and LSQ.

  • CUPW undertakes a study “Overload” to better understand the impact of the changes at Canada Post with Postal Transformation on work life balance. The researchers develop a survey and advisors play a key role in administering the survey by phone to all members who have gone through PT. An overview of results is published in Summer 2014 issue of Member-to-Member Connection.

The Special Needs Project supports CUPW members in 65 different locals and 8 regions. It supports UPCE members in 8 locals and 4 regions.

• 2014

  • Eight postal workers attend the ChildCare2020, a 4thNational policy conference on early childhood education and care. Members attend workshops on a range of topics including quality, inclusion, Indigenous children and making the economic case
    for building a national program. CUPW hosts a Save Canada Post table.

• 2015

  • CUPW collaborates with the Canadian Centre for Policy Alternatives to release an overview of public education inclusion policies and funding in all Provinces and Territories. Soon after CUPW and UPCE publish an on-line searchable Special Needs Resource Guide to assist parents with children with special needs to navigate the education system and know their rights. Social media helped get this guide circulated to disability groups.

  • The Unions hold the first National Advisor’s Conference in Port Elgin, ON. This is the first time that our Advisors get to meet face to face with project staff, Child Care Coordinators and 2nd National VP. Two CUPW parents attend to have a face- to-face conversation with their advisors. A thank your poster is given as a token of our appreciation. Parents using our Special Needs Project have a one-time increase
    in funding for the summer months and those on Moving on also get a lump sum payment. This helps all parents with the additional costs parents face when having a child with disabilities. It was also an important way for the union to pass on the profits from CPC.

Currently there are 32 Special Needs Project advisors. Ten of them have been with the project over 15 years. One has been with the project from the very beginning.

The Special Needs Project: 20 Years of Supporting Members

This summer is the 20th anniversary of the Special Needs Project. Current and past members from across the country reflect on what being a part of the project has meant to them and their families

When Brampton letter carrier John Adeshigbin’s son Abbey first started to get sick in the late 1980s, he didn’t tell anyone at work what he was going through. And he worried about having to take so much time off work.

“I kept having to take Abbey to the hospital because he was experiencing pain,” Adeshigbin remembers. “They’d say nothing was wrong, until he had a stroke at age five. He was taken to Sick Kids in Toronto by air ambulance—that’s where they discovered he had sickle cell anemia.”

The hospital got in touch with Adeshigbin’s work supervisors to let them know what was going on. To his relief, he was granted special leave. After his stroke, Abbey woke up from a coma blind and with the left side of his body paralyzed. He’s still living with those disabilities today.

A few years later, when Adeshigbin heard his union’s childcare fund had launched a project for postal workers who had children with special needs, he became one of the Special Needs Project’s first members in the Toronto area.

“I thought it would help, recalls Adeshigbin. “I had been doing a lot of research, searching for all sorts of government assistance and resources on my own. It wasn’t easy.” And when it turned out that two more of Adeshigbin’s sons, Lanre and Kareem, also had sickle cell anemia, it was a relief to know that the project was there for them too.

Adeshigbin says the Special Needs Project gave him the confidence to ask for time off from work when he needed to take care of his family: “Talking to my Special Needs Project advisor and knowing that the project is fully backed by my union really helped a lot.”

Like many other members, Adeshigbin felt that the union had his back.

Twenty years after the Special Needs Project was born as a summer camp pilot, it is still the only project of its kind in North America. No other union has offered a child care initiative this ambitious or progressive to its members.

While the financial support members receive from projects like Special Needs and Moving On help in very tangible ways, the project offers other types of support that are equally important, if more difficult to quantify. There’s the emotional support that members receive from their Special Needs Project advisors and from project staff, and there’s the awareness the union has helped to raise among postal workers about what it’s like trying to balance your life at work with your life at home when you have a child with special needs or disabilities.

Progressive Union, Progressive Project

John Bail, who was CUPW’s National Director for the Pacific Region up until he retired recently, remembers back to the ‘90s, the decade when CUPW was negotiating the Child Care Fund with Canada Post, and the decade that the Special Needs Project was born.

"The national union had a women's caucus and we were really at the forefront of women's rights," recalls Bail. “Child care was seen as a woman’s right—it still is—and yet it’s a right for all parents, really. I was a single dad, so it was different for me.”

Bail’s situation as a single father of three wasn’t very usual at the time, and still isn’t really today. And one of Bail’s three children, his son Ryan, had special needs. “I wasn’t getting a lot of assistance from the government of British Columbia,” says Bail. “I had about three hours of respite time per week, which was pretty insignificant.”

Getting into the Special Needs Project meant getting some immediate help, like having an advisor to talk to about what resources were available and getting some financial assistance to cover some of Ryan’s needs.

But it also had long-term effects. “It felt like my union was not only supporting me at work but supporting me in my life in general,” says Bail. “It gave me the time to get more active in the union after I had backed out a bit because I was so busy. It was a light in the darkness where they were actually talking about supporting people with children with special needs. It was a life-changing experience for Ryan as well.”

Ryan is now 31 and living on his own in Sooke, British Columbia. He qualifies for about $900 a month in government disability allowance. That’s not enough to cover his monthly expenses, so he makes up the difference working part time at a fast-food restaurant.

“I think the program had a lot to do with Ryan’s ability to live on his own,” says Bail. “The outcome for Ryan was a positive one. He’s a very pleasant individual and he’s somewhat self-sufficient as well. He has some issues with daily life matters but he does fairly well.”

Having a child is expensive. And having a child with special needs is almost always more expensive. Factor in single-parent families or families that have more than one child with special needs, and these expenses mount even higher.

“I had one child with an invisible disability and one with a very visible disability,” says Gwen Holmes, a postal clerk in Ontario. “The perspective of each is slightly different.” Both of her children started in the 1995 summer camp pilot and continued when the Special Needs Project became permanent in 1996. She used the support she received to cover extra tutoring for her son, Jonathan, who had some learning difficulties related to attention deficit disorder.

For her daughter Elizabeth, who has blindness and developmental delay caused by Leber's congenital amaurosis, Holmes used her funding for life skills training and support to help Elizabeth participate in recreational activities like swimming, horseback riding and skiing.

Jonathan, now 30, is a construction carpenter in Alberta, where he lives with his wife and two children. Elizabeth, now 28, is living at home with her parents. She’s part of the Moving On project, which helps her participate in activities outside of the house almost every day.

"Elizabeth is an inspiration to me every single day," says Holmes.

For John Craig Power, an RSMC in Nova Scotia, being part of the Project means his nine-year-old son Max, who has autism spectrum disorder, can learn to swim. “Private lessons cost about twice the amount of regular lessons,” says

Power. The money also helps pay for Max to attend a day camp three or four times a week for eight weeks in the summer. The camp is organized by Parents Supporting Parents, a group of parents around the Truro area who all have children with special needs.

Power says Max is doing well. It turns out he loves swimming. And after a year of early intensive behavioral intervention (EIBI) therapy, Max began to speak in words. “Before that he’d been non- verbal,” says Power. “It was pretty big.”

Jean Valiquette, a letter carrier in Quebec, has a 14-year-old with dyspraxia and moderate intellectual disability. Julien has been in the Special Needs Project since he was six. The project has helped Julien with activities like playing hockey in a special league and learning karate.

“This is quite an achievement for a child with dyspraxia,” says Valiquette. "He'd never have had these opportunities without the Special Needs Project. I can't say thank you enough."

“Being part of the Project helps relieve a lot of stress,”

says UPCE member Toni Swan, a customer service supervisor in New Brunswick and single mom to two children. “An ease of financial stress leads to an ease of overall stress—finances are huge.”

Swan’s son Jacob, 12, has autism spectrum disorder and has been part of SNP since he started school. Swan has used the financial support she receives to help pay for Jacob’s applied behavioral analysis (ABA) therapy, and activities like therapeutic horseback riding and summer sleepaway camp. “The first time he went was just earth-shattering,” she says.

Jacob is largely non-verbal, so the camp counsellors give Swan a CD of pictures and write at least a paragraph each day for her so she can see what he did while away at camp.

More Than Just Financial Support

But Swan and the others are quick to point out that the support the project offers is about a lot more than just money.

“My advisor, Normand, is wonderful. He always has a great story to relate to what you’re going through,” says Swan. “Having access to the newsletter and having that support from my advisor and the others working for the project if I need it, having my questions answered...it’s the best.

"And just knowing that there are people with jobs like yours and work stresses like yours but they're also parents of chidlren with special needs. It's nice to know there's a support system."

Holmes also stresses that it’s not just the money— although it undeniably helps.

“It’s also the recognition that in order to be active in the labour movement, in order even to work, my life is a little different. All of us parents of children with special needs, whether they’re smaller or a little older, our lives are a little different,” she says.

“For me it will always be the acknowledgement, the support, and the love from Jamie Kass and others. I think that the importance of this, in the anniversary year, is that it’s just an incredible achievement.”

Like all the members we talked to for this story, Holmes mentions how supported she feels by her advisor and the project staff, and how much it helps to read Member-to-Member Connections. “To hear the stories and know that other members of our union are going through the same thing means there’s hope at the end of the tunnel.”

“The newsletter shows us that we’re not alone in living with these challenges,” says Valiquette. “I always read carefully from beginning to end.”

Facing The Future

Valiquette says the biggest challenge they face is helping Julien become as independent as possible before he reaches adulthood. “For now we know he’s entitled to educational services until age 21. After that, we’ll see.”

He has decided to delay his retirement plans for now, but maintains a positive attitude about that decision, saying it’s well worth it considering the progress Julien has been making.

These types of discussions have a familiar ring to parents of children with special needs. “What’s in the future? How do we get to it? And what do we do?” asks Holmes. “Right now, it’s really on our mind.”

Adeshigbin isn’t quite ready to retire yet either. And recently he’s faced what he calls a “setback.” For more than two decades he was granted special leave when one of his sons became sick, but over the last couple of years his requests have been denied.

“I’ve been told that I have to use all my sick days and all my vacation, too, before I can apply for special leave,” he says. “Before they always approved it.”

With uncertainties brought about by postal transformation and the additional pressures it puts
on postal workers and on the hard-fought “work–life balance,” perhaps it is more important than ever to reflect on just how much a union can do to support its members. While we stand together and celebrate this milestone year for the Special Needs Project, it's also important to think about where we're going next.

Our Kids: Then and Now

To all the people at the Canadian Union of Postal Workers, Special Needs Project. Thank you very much for the financial support we received from you over the years. I am a PO5 in Winnipeg and have been with Canada Post for the past 26 plus years. My son Aaron was diagnosed with autism at the age of 6 years. He will be 18 years old this summer and is doing really well. It has not been easy raising Aaron on my own for the past 15 years. The money I get through this great project really helped with Aaron’s childcare. We, Aaron and I, really did appreciate the financial help. It may not be a lot of money to some people but it made a difference to me with only one income coming into the household.

PO-5

Winnipeg, MB

Nicholas was my Mother’s Day gift in May 2000. He was my treasure then and I have been his biggest cheerleader and fan for the last 15 years. His star shines so very bright. I just absolutely adore him.

I had this picture of him taken with his grandma’s blanket of many colors to represent that village that it takes to raise our children with special needs – the steady hand and knowledge of a surgeon, the awesome ‘know-how’ of his physiotherapist to help him walk, the speech therapist, the loving and patient teaching from his childcare workers and teachers at school, the guidance from the Special Needs Project advisors, etc. The list goes on.

Thank you for the available information, listening ear and the financial help to meet his needs.

PO-4

Montréal, QC

My family and I want to thank the Special Needs & Moving On team for the support and financial help we have received over the years. Special thanks to our advisor Rhonda who listens to our concerns and guides us towards resources. My son Numair is currently a grade 7 student. He likes going for karate and swimming regularly and has made significant progress. His continuous enrollment in these programs was made possible by the resources provided by the Special Needs project. I am really thankful for that. I know it’s a long road but I am not ALONE!

Letter Carrier

Pickering, ON