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

10 Years: Happy Anniversary, Moving On!

It has been ten years since the Moving On project was first introduced to postal workers.

Our Unions recognized that members who have adult sons and daughters with disabilities face additional emotional and financial stress as well as a lack of adequate supports and resources as they try to balance work and home life. Following the Special Needs project, a parent told us: “Children don’t stop having disabilities when they turn 19.” In fact, issues of independence and future planning for the child’s security increase along with family stress and financial worries.

CUPW-UPCE/PSAC responded to members’ needs and CUPW, in 2003, successfully included adult children who are dependent on their parents for care into the Child Care Fund, Appendices L (CUPW) and H (PSAC) respectively.

Moving On has helped to support members and their families with the additional challenges they face as their sons and daughters with disabilities ‘move on’ to adulthood. Since the project began, we have supported 452 members with approximately 475 adult daughters and sons.

And now, some members, like Robert MacDonald featured in this newsletter, are retiring. We wish him, and all those members who are “moving on” to new places in their lives, all the best!

“RWA will promote understanding as to the value of hiring people with intellectual disabilities and ASD.”

What is It?

This national initiative is a project of the Canadian Association for Community Living (CACL), in partnership with the Canadian Autism Spectrum Disorders Alliance (CASDA).

The vision that guides the project is to build “an inclusive and effective labour market, with an employment rate for people with intellectual disabilities and autism spectrum disorders on par with the national average”.

The three-year project (September 2014 to August 2017) is designed to increase employment opportunities of people with intellectual disabilities and ASD.

The RWA project is funded by the Government of Canada and is active in 20 communities throughout the country.

• St. John’s Metro area, NL

• Queen’s County area, PEI

• Saint John, NB

• City of Quebec, QC

• City of Toronto, ON

• Winnipeg, MB

• Prince Albert, SK

• Edmonton, AB

• Vancouver, BC

• Iqaluit, NU

• Halifax Municipality, NS

• Fredericton, NB

• Montreal, QC

• Toronto Region (GTA), ON

• Brandon, MB

• Saskatoon, SK

• Calgary, AB

• Prince George, BC

• Whitehorse, YK

• Yellowknife, NWT

What Does It Do?

The primary focus of RWA is to reach out to employers. The project hopes to achieve approximately 1200 jobs during its three years.

RWA is designed to:

• Engage, connect and support three key groups - 1. employers, 2. people with intellectual disabilities and ASD, and 3. community agencies - at three interconnected levels - local, provincial/territorial, and national.

• Promote understanding and awareness among employers and the general public as to the value of hiring people with intellectual disabilities and ASD.

Enhance the capacity of employment service providers to refer people with intellectual disabilities and ASD to employers and help them transition into employment.

In addition to creating increased employer demand, RWA will also focus on the areas of transitional planning, entrepreneurship, inclusive post secondary educational opportunities, and strengthening employer-to-employer networks.

How Does It Work?

The program will be delivered by Labour Market Facilitators (LMFs), located in each province and territory, and 4 Regional Autism Coordinators (RACs) who have responsibility across the 20 communities. To find out if you or a family member can take advantage of this initiative, contact the RWA staff in your area. Contact information of RWA staff in your province can be found here.

Where necessary, the project will also provide funds to enable the provision of necessary on the job supports that might be required by individuals as they transition to their new employment.

For More Information Contact:

Don Gallant
National Director, Ready, Willing & Able
Phone: (709) 437-1504
www.readywillingable.ca
Email: dgallant@nl.rogers.com

Advisor Profile: Kathleen Barrett

When you talk to Kathleen Barrett about her life and work, one word comes up again and again –“Gratitude.”

Kathleen is an Advisor for the Special Needs and Moving On Projects. She does this work in addition to her full time job at Rygiel Supports for Community Living, a non-profit organization in Hamilton, Ontario.

For the past 20 years Kathleen has coordinated supports for people with physical and developmental disabilities at Rygiel. Kathleen is grateful for the people she meets, coaches, and assists with supports. She enjoys watching people grow by making sure they have the supports they need to live a full and meaningful life.

Kathleen’s work at Rygiel is a great ‘fit’ for her. Her 24-year-old daughter, Tara, has physical and developmental needs. Tara lives with Kathleen and Kathleen’s younger 18-year-old daughter, Faith. The Barrett household is also home to 3 cats, 4 kittens and a dog!

One day, a little over five years ago, a co-worker at Rygiel (who is a CUPW Advisor) asked Kathleen if she was interested in working with the Special Needs and Moving On Projects. The rest is history - Kathleen has been an Advisor in both projects ever since!

Kathleen has gratitude for the people she meets through the Special Needs and Moving On Projects. She is grateful that members are open and willing to share their stories, along with their challenges and difficult times. Kathleen learns much from members. They teach her about their particular needs and she is inspired by how they think positively about the future and work to achieve their dreams for their children.

As an Advisor with the Moving On Project, Kathleen has many discussion with parents about advocacy. When adult children turn 21, there is a big gap in services and supports. Things can feel very bleak for families (no school, no funding, no day programs). Kathleen finds herself in a similar position personally, and is able to share with members what she has and is going through.

Kathleen understands that it is hard to get to a place of dreaming for your adult children when things are so difficult. But she works to support families to get to a place of thriving instead of surviving.

And what supports Kathleen through all of her life’s demands? Kathleen pursues her passion – she is a yoga instructor! As well as having a daily practice, Kathleen teaches yoga at a Martial Arts School and to individuals with disabilities at Rygiel. At Rygiel, she teaches ‘partner yoga,’ that includes the support people and the individuals with disabilities.

Kathleen sees yoga as a meditation, through body and breath awareness, that calms the mind and nervous system, boosts immunity and overall health. If you calm yourself then you can calm the people you are with.

And while Kathleen talks about the gratitude she feels in the work she does, you can be sure that families are grateful to her for the support she provides through the Special Needs and Moving On Projects!

Moving On Families:
Ten Years of Challenges and Support

The Moving On Project for CUPW members’ adult sons and daughters with disabilities marks its tenth anniversary this year and there’s a lot to celebrate! We interviewed several members who use the project as well as one of its founders.

Background/Timeline

In 1989, postal workers were surveyed about their child care situations. The survey revealed an urgent need for support for members who had children with disabilities.

Based on recommendations from the survey results, the union’s Special Needs Project was born as a summer pilot project in the summer of 1996. It was so successful that CUPW decided to make it a permanent, year-round project. It remains the only program of its kind and has been honoured by awards from the Quebec government and Family Service Canada.

By 2005, the Moving On Project was introduced as it became clear that families with dependent adult sons and daughters with disabilities also need support. The Special Needs Project provided assistance for families up until their child was 18.

Before they could access Moving On, members with dependent adult sons and daughters with disabilities who were turning 19 faced very stressful times as most programs and supports are designed only for children. Canada Post agreed in the 2003 round of bargaining to expand the coverage to include members who had adult children dependent on their parents for care.

Donna Michal, a long time Advisor for the Special Needs Project, worked with CUPW to help create the new project. She heard lots about these issues. “Parents were saying ‘there’s nothing for my child after they finish school,’” she recalls. Michal says it was important to understand and hear the concerns and dreams parents have about the future for their children with disabilities.

Felix Lussier, 33 years old, has a severe developmental disability, is non-verbal and has difficulty communicating, especially when he is feeling bad. His father, Judes, an RSMC, told us about his son’s transition to becoming more independent. “I used to be very protective of Felix,” Jude said, comparing his protectiveness to a “prison,” but “over the years I’ve come to understand he can handle some things.”

Now, Judes says, with the help of supports like Moving On and l’Entraide, a non-profit group for people with disabilities, Felix has “done all kinds of things we would never have believed he could do.”

“Felix is living at the Maison de l’Arche with about 5-6 friends. They all look out for each other. He is happy there and he’s happy to visit with us.”

Felix now has a job shredding paper, which he likes because it keeps him busy, subscribes to the Journal de Montréal because he likes to look at the pictures, and often goes to hockey games, more for the atmosphere than the hockey itself. “He likes to watch the crowd,” said Judes.

“We made a very conscious choice to use “’adult sons and daughters with disabilities, rather than “adult children with disabilities”’ Donna Michal remembers. “’Adult children with disabilities’ doesn’t acknowledge that they are adults who should be involved in the planning of their lives.”

In 2004, in planning the design of the new project, she organized focus groups with postal workers across the country. “I called these parents and said that the union was looking at a way to support them.

To Michal’s amazement, 98% of the people she contacted showed up for the meetings. “It was such an important issue for them.”

Michal will never forget the initial focus groups with CUPW members. “It was an extremely moving experience to meet them and hear their stories... These were painful stories–once their children became adults, there was nothing for them. We heard that there were not enough services in communities, we heard about long waiting lists, about how work-life balance was affected, and about issues of independence for adult sons and daughters.”

The Moving On Project has done its best to address these gaps. “Parents had no help or support in planning,” said Michal. The parents who had had children in the Special Needs Project “really liked it and wanted something similar – access to an advisor, information, some financial planning.”

Kathy Hauck, a lead hand in Wainwright Alberta, was one of the early users of the Special Needs Project for her son Ian. An early video about the project, Key to Caring, shows a then five-year-old Ian signing “Twinkle Twinkle Little Star” with his family, who were all taught sign language so that they could communicate better with him. “I don’t remember how I found out about the project,” Kathy says, but she lets her co-workers who might need it know about it. “It’s not being proud, taking care of you and your family. You have to be very resourceful to try to figure out how you’re going to get through every day.”

Support For Members

As it does with the Special Needs Project, the union provides advisors for members who have adult sons and daughters with disabilities. The Advisors help families identify ways to use the project’s funding and services to fit their needs. Through the project, families can access education supports, including for postsecondary education as well as training, respite caregivers and other activities.

“The project has found Advisors who have experience [in supporting adults with disabilities] and can offer support to CUPW members,” said Donna Michal.

“Aside from financial support, they find somebody to give them opportunities to dream for their kids. They are empowered to go out and find options... There’s always something this project can offer people.”

Michal also has huge praise for the three staff who work full time administering both the Special Needs and Moving On projects, operated by Family Place Resource Center in Baddeck, Nova Scotia. She feels their work gives the project an extra sense of caring and flexibility in the way they respond to individual needs. The staff is incredibly committed to offering parents any support they can and often talk to them by phone.

“With the money the union gives us, we organize activities and outings, workshops,” said Judes Lussier.

He is also the president and a volunteer at l’Entraide. They know how to make a little money go a long way for the families they help. “More funding means we can offer more – if there are no community supports, families suffer – the kids never go out.” Judes points out that smaller and rural communities under 35,000 people often lack the facilities and support networks of larger urban settings.

Michal says that members are usually “thrilled” to learn that there is some support for them. “There is no other union that does this.” She is proud of the example the Project sets as a grassroots initiative that can be a model for other unions and community groups to follow. Most of all she underscores the possibility of transforming research into action: “It wasn’t just to survey parents and write about focus groups. The goal was to do something, get something going for families... I’m honoured to be part of this. It is possible to make a difference in people’s lives.”

Judes Lussier agrees. “The union’s program is exceptional.” He wants all persons with disabilities and their families to have recourse to such programs. “Now the fight is for all Felix’s friends, to have services for everyone.”

Sonya Payne, a postal clerk, is a single mom with four children, 2 girls and 2 boys. Three of her children struggle with disabilities and her 2nd son, Sheldon, is severely autistic.

Sheldon, now 26, has been living in a group home since age 13. Advocating for her son is exhausting, Sonya explains. “I’m always fighting – the staff at the group home, doctors, the government, his father.” After the $1,000.00 Sheldon gets from the Ontario Disability Support Program (ODSP), he has $138 left, which is not enough to cover all his needs. When Sheldon had surgery last year, Sonya had to plead with OHIP to get it covered.

She also had to take personal time to be with her son during his surgery as her request for special leave was refused. Sheldon has been on a waiting list for passport funding since 2013.

Kathy Hauck’s family has also had a fight on its hands with her son’s doctors. She was taking a vacation in Mexico with her daughters when she learned from Ian’s group home that he had suffered congestive heart failure due to being taken off his medications. Kathy said, “There is no excuse for what has happened.”

Now Ian has a VAD – a Left Ventricular Device – permanently installed through his abdomen, which helps his

heart to work. He doesn’t qualify for a heart transplant. This device, which keeps him alive, costs $100,000. Kathy told us that Ian started using the sign language he’d learned when he was five when he was in the hospital and unable to communicate any other way.

The funding and support that Moving On provides helps parents cope with their challenges. Sonya used to need a respite worker for Sheldon during the nights when she worked. “It really helped a lot, having the extra funding and the peace of mind, knowing that if he wakes up, the worker is there.” Both Kathy and Judes have also used respite workers.

“He’s a wonderful loving boy,” Sonya says proudly of Sheldon. “He’s given me the strength I have now. He’s taught me patience and made me the person I am. People ask me ‘where do you get all this love from?’ I have learnt from my experiences.” Kathy Hauck says “I’m blessed he’s here–I’m blessed by his presence in my life, the unconditional love he shows. He doesn’t care what colour you are, he doesn’t care about money, he doesn’t care what you’re cooking as long as he can eat some... he’s contagious, you can’t help but love him. If you want to learn unconditional love, be with him.”

Parents say their understanding of their sons and daughters, as well of themselves, has grown and changed over the years. “He’s constantly teaching me,” says Kathy of Ian. “He’s so patient and helpful... always giving me hugs and kisses.” Judes Lussier told us Felix taught him “to slow down, learn to appreciate everything in life and accept things as they are.”

“Felix listens to everything, he’s a good sounding board!” He laughs, and then grows more serious as he reflects upon how Felix taught him to get over disability phobia. “Before Felix, I used to cross to the other side of the street” when he saw a person with a disability. “Now I couldn’t do that.” He also talks about how Felix has helped him and his wife become more community-oriented. “I would never have done so much volunteering if it were not for Felix.”

Making Connections

The newsletter you are reading, Member-to-Member-Connection, is also part of the Special Needs and Moving On projects, helping to connect families through sharing their stories and experiences.

“Member-to-Member-Connection makes you feel better – you are not alone. When I see other kids with disabilities, I look at them and see what they go through,” said Sonya Payne. Similarly, Judes Lussier likes to read about others’ experiences. “Everybody has had their lives changed by their children,” he said. He is glad to see that Member to Member Connection offers useful information such as tips on how to apply for the REEI – Quebec’s Régime enregistré épargne invalides. “When we had a meeting, out of 13 in attendance, only myself and one other person knew about it.”

“I find it helpful – it makes me aware that there are others who have challenges and often more challenges than I do,” said Kathy Hauck. “I’d like to see it mailed to all members because some have no idea – it might make them stop and think.”

Inclusive Education Report: Time for Change

An analysis of policy and their implementations across Canada

by Helena Towle

CUPW commissioned the Canadian Centre for Policy Alternatives to write a policy analysis of inclusive education across the country. We used Appendices L and J (Child Care Funds) of the Collective Agreements to look at policies that affect many of our members who have school-age children with special needs. Government policies can impact children’s’ experience in the education system. Here is the executive summary from the report that will be released soon.

Compared to adults without disabilities, adults with disabilities in Canada have lower levels of education, higher rates of unemployment, and lower household incomes in addition to challenges accessing affordable housing, health care, and transportation. Given the long-term implications of a lack of education, children with disabilities must be given opportunities to learn in an accepting environment with their peers so they can go just as far.

This report provides a general picture of special education policies across Canada. Its intended audience is mainly parents and other family members of children with disabilities. Because they are the primary advocates for their children, it is important for them to have as much information as possible about the policies supporting their children’s right to education in every province and territory.

The right to education of a child with a disability is protected by multiple pieces of international legislation on human dignity and the need to respect diverse needs. However, unlike the United States, Canada has no federal legislation protecting the rights of a child with a disability to inclusive education, because education comes under provincial and territorial jurisdiction.

Although every province and territory has some form of policy on inclusive education, they vary widely in terms of how they define inclusion, how they put inclusive education into practice, and how they fund it.

The author provides an analysis of the current inclusive education landscape in Canada by examining the policy of each province and territory. Basing the report findings on this policy comparison along with a literature review and informant interviews, the author presents a number of recommendations to change the way disability is understood within special education policies across Canada.

The author concludes that inclusive education needs to become a priority for all of Canada’s communities because educational outcomes for people with disabilities have a long-lasting impact on everyone. The investment in improving understanding of, and supports for, inclusive education is an investment that will create a more understanding society. Residential institutions have been closed, so let’s not keep students with disabilities separate and segregated any longer.

Jayden is 16 years old. My son is in quite good health. His marks at school range from a C+ to a B+ right now. He uses the resource room to do his work in some of the subjects and he writes his tests there. He takes 40 mg of Ritalin for the whole day. He is detoxed one time per month and has an Isgemix protein shake 1-2 times per day. He is 6’4” tall. He is well liked. He is taking guitar lessons and is playing volleyball. He was made captain two years in a row and most valuable player this year. He is on the swim team at school and will do badminton when it is available. He also signed up for the rowing team. He is kept very busy. He has youth group one night per week at our church. He spends about 1-2 hours per day on his cell phone looking at youtube or facebook. I take his cell away (he hands it in) at 8 pm every night and he leaves it at home every school day. He is to be in his room by 9:30 pm every night.

Letter Carrier

London, ON

Hi, I’m a letter carrier in St. John’s and my daughter Claire (6) has autism. She is presently doing an ABA therapy program which is having great results with her development. This is a Christmas picture of Claire and her brother Damian in front of the family Christmas tree.

Letter Carrier

Mt. Pearl, NL

The month of April means so much to our family, it’s the only month of the year where we don’t find ourselves alone in this autism world. We are VERY proud of our children with Autism and on April 2nd we wear our Autism gear with pride! Every year we add a little something new to our collection, as well as our “blue” themed dinner. This year our school went blue! We have such great support from all the students and staff. Our children are surrounded by people who love them at home and at school!

Here are some of our pictures for World Autism Day, April 2nd, 2015.

Letter Carrier

Windsor, ON

It’s now been more than two years since Caleb was first diagnosed with autism. Since then, the dust has settled and we’re starting to catch our breath. CUPW’s project has given us time for respite and a chance to meet other families who face the same challenges as we do. We have meetings every month to organize fundraising events that allow us to organize activities for our autistic children: music therapy, arts and crafts, animal therapy and swimming are just some of the activities that help provide respite for the parents and enrich the lives of our children. Our group, Regroupement autisme Presscott-Russell, is very active in the community. We even had the opportunity to fly our flag at City Hall on April 2nd, World Autism Awareness Day! 

Letter Carrier

Saint Albert, ON