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

Dear Sisters and Brothers,

In October 2005, I was elected National President of the Union of Postal Communications Employees (UPCE) component of the Public Service Alliance of Canada (PSAC).

I have been very supportive of our union’s work with CUPW on the Child Care Fund. In 2000 after we negotiated a child care fund with Canada Post, I was the UPCE representative for child care. I had at the time, two young children in child care programs in Quebec.

I think the Special Needs and Moving On projects are extremely important in recognizing the additional difficulties that members face working and having a child with a disability. This project helps our union reach out to members in a very special way. It keeps us connected with many of the issues that you face. Currently there are 25 UPCE-PSAC members taking part in this project.

Along with CUPW, we are excited to launch our new poster, Breaking through Barriers. It is colourful and should be easily recognizable as we try to have it on all union bulletin boards in our workplaces. Our goal is to increase the visibility of disability issues at work. It will also help get the message out that children with special needs have a range of disabilities. Some are readily visible while others are invisible. But it is important to support everyone. So please let’s take this opportunity to talk it up at work and let everyone know about these projects.

In Solidarity,

Richard L. Des Lauriers

National President UPCE

Having triplets at 31weeks (9 weeks premature) was very scary for my wife and I with the risk of so many premature infections and disabilities. We did not know what to expect. Now 3 years later we have special needs children. Our daughter is non- verbal (3 word vocabulary) and is very hyperactive. Our son Cameron is on the Autism spectrum and we are on a waiting list to officially diagnose our son Carter who is 4-6 months developmentally delayed. Chloe and Cameron on the other hand are closer to 12-14 months developmentally delayed. They all have asthma. Even with all the special needs we are truly grateful for our little miracles.

Windsor, ON

We have a 13-year old autistic daughter. This year, she entered high school. Naturally, she couldn’t attend the regular classes because her comprehension and language skills aren’t well developed, but we’re happy to see that she’s doing better in a special class for children with learning difficulties, which is geared to her needs. The only problem is that there’s no daycare at school. Child care usually isn’t provided for children her age. But she isn’t very independent, and since she starts school at 9 a.m. and finishes at 2:30 p.m., we face an enormous problem. Her school schedule isn’t very compatible with a normal work schedule. It isn’t easy to find someone who wants to care for a 13-year old girl, especially at staggered hours. Thanks to the financial assistance we get from the Special Needs program, we’ve been able to find help. A lady comes in every morning to watch over Laurianne from 7:30 to 8:15 a.m., returns at 3 p.m. and stays with her until 4 p.m. There’s no doubt that without the program’s support, we’d be facing budget problems.

We are happy with this arrangement for the time being, but a school-based child care program is what we really are hoping for.

Letter Carrier

Longueuil, QC

When you have a child with special needs, very few people can ever dream of the responsibility that is inherent with it, unless they themselves have been subject to catering to a child with these needs. With this in mind I extend a heartfelt “Thank You” to our CUPW/UPCE – PSAC Special Needs Project. It is not only for the financial support offered but also for the emotional support, comradeship, understanding and empathy that we receive from our contact and advisor. I just want to acknowledge all the effort the co- coordinators have put into this project and in particular the encouragement they give for us to share our experience, information and knowledge acquired, so others may benefit. It is amazing. Hats off to you and once again, “Thank You”.

Administrative Assistant

Mississauga, ON

I am so happy that Nova Scotia will be getting the money (hopefully) for childcare. As for New Brunswick, well as usual we are being forgotten by our own Premier (Lord). I am starting a new job with Canada Post (P05 Midnights) so that I can be home to look after my sons during the day and evening. I’m having trouble finding someone to look after Chris because of his disability. I had my mother but she passed away in April (cancer) so again I have to put my faith in myself. We do thank you for all your help, understanding and caring.

Mail Dispatcher

Moncton, NB

Editor's Note: NB signed a federal/ provincial agreement in November.

We all know how much we value CUPW’s Special Needs program. But we should be waging our battle more with our dear government, and insist that all specialists work together to conduct appropriate research on vaccines and antibiotics that are harmful to young children. The pharmaceutical industry has a hold on our governments. This has to be stopped. Research needs to be done on the heavy metals our children are breathing in. We should also educate people on our infamous Food Guide to Healthy Eating, which is poisoning us all by promoting the consumption of beef that’s full of casein the human body cannot digest, antibiotics, etc., not to mention the excessive amount of gluten found in all the food made with wheat. We need to become more critical and do the research. We’ll then see how these products affect the left hemisphere of our brain. The answer lies with curative therapy. Once again, thank you, CUPW.

Montréal, QC

Transitions are often challenging, but even more so for families who have children with disabilities making major changes at school or becoming adults. The following stories are about the transitions experienced by three families in the Special Needs/Moving On projects.

Now that You’re All Grown Up...

Susan Miller had no plans to become an employer with responsibility for training, hiring and paying workers. But when the Victoria postal worker’s son turned 19 this past summer, that’s what the government of British Columbia required her to do in order to access funding for his care.

Miller’s son, Neil, has Duchenne muscular dystrophy and scoliosis, and is on a ventilator. When he was a child, the province provided about $20,000 monthly for the high level of care he needed; now, at 19, the monthly funding available for his care has dropped by almost 73%—to $5,497.96.

“It’s pretty tough,” said Miller, who also has a daughter, 16. “The government makes it really hard to go through this transitional process. There’s so much paperwork and steps to get this funding. They make you incorporate. It’s been a lot of work and I’m still adjusting. I have to do payroll, pay into EI and Revenue Canada and had to open up accounts for all of that.”

People who have Duchenne muscular dystrophy have generalized weakness and muscle wasting, which eventually affects all voluntary muscles, and the heart and breathing muscles. Neil’s severe scoliosis is related to the muscular dystrophy. He also had to have a tracheotomy and be placed on a ventilator to ease his breathing difficulties. CUPW’s Moving On Project helps to pay for the vitamins and supplements he needs that aren’t covered by plans.

Before Neil became an adult, Miller could pay for 360 hours of care provided by registered nurses and licensed practical nurses. New nurses coming into her home would be given a three-day course and then work for five days alongside another nurse to learn the basics of Neil’s routine and chest physiotherapy. After that, Miller would spend three or four shifts with each of them.

No Licensed Care

Today, there is not enough money to pay for licensed care. The government says the monthly funding is enough to cover 53 hours of care per week at an hourly wage of $25. But Miller needs more hours each week and so is only able to pay about $14 an hour. Training a new worker consists of a basic one-day course on what it means to be ventilated—but no training on the ventilator. Miller and her other staff must do the bulk of the training.

“I don’t have help on the weekends, only Monday to Friday,” says Miller, who works part-time in the afternoons. Staff come into her home at 10 a.m. each day and the last shift ends at 2 a.m. Neil needs to be rolled and manoeuvred a minimum of once or twice per night. If he is getting a cold, more care is needed, such as suctioning, more positioning and dressing changes.

There is, however, a small silver lining. Miller says it was difficult to have continuity of care when Neil was a child because the nursing agency hired everyone as a casual and there were availability problems. Now that Miller employs her own staff, there is more stability.

A Complex Case

Miller said the transition to incorporation and lower funding was made even more difficult because no one in government realized what would be involved in Neil’s case.

“The process took almost four months but we weren’t allowed to start until two months before his birthday,” said Miller. “By the time the government got back to me [after the application process started] they went into panic mode because there was still so much to do. They didn’t realize some transitions are complex and assumed it wouldn’t be a big deal.”

But it was a big deal, and Miller had to take two months off work without pay to make sure she could make things go as smoothly as possible for her new staff. It was tough to make ends meet. When she returned to work, she faced another financial hit—the pension payments she owed for her leave period were all deducted off her first cheque, reducing her pay to $33.

Her best advice to parents facing a similar transition is to start early and make sure all those who will be involved in the transition understand right away what the child’s needs will be.

Going Into Adult Medical Services

For Mona Poulin’s daughter, Lisa, the biggest stress from transition into adulthood was moving from children’s medical services to adult services. Lisa has cystic fibrosis, diabetes, asthma, arthritis and osteoporosis. She has to eat 5,000 calories a day to keep her body weight up.

Once Lisa turned 18, it meant moving from the children’s cystic fibrosis hospital clinic in Calgary to the adult clinic at Foothills. During the three-month gap between her last check-up at the children’s clinic and her first one as an adult, Lisa had a medical emergency and had to be taken to hospital.

“She was treated as just another adult,” said Poulin who works in a mail processing plant, off-shifting with her supervisor husband. “They were ignoring her signs of sugar going down, down, down, and not acknowledging that she has cystic fibrosis.”

When the hospital finally called the doctor who specialized in cystic fibrosis, “he was fuming that he had not been contacted by the hospital. He said to me, ‘don’t ever go to the hospital without contacting me.’”

Other issues also made for a difficult transition

“Before, we saw the doctor together, but now Mum and Dad don’t exist. They want to see the children alone. As well, in the first 18 years, we only saw one person who was really sick, but when you go to Foothills you see everything while you are in the waiting room,” said Poulin, explaining that cystic fibrosis progresses with age.

Helen Healy, a specialist in transition issues, says that the “big problem is that the main supports all fall away at age 18. The whole group that lives around and protects that child all fall away, shake hands and say ‘bye, bye’ and the child goes into an adult environment without the skills to negotiate that environment.”

Healy, who is director of community outreach, recreation and education at the Bloorview MacMillan Children’s Centre in Toronto recalls accompanying an 18-year-old young woman with spina bifida to her last appointment with her neurosurgeon, who shook hands and wished her luck.

Afterwards, the young woman burst into tears, telling Healy it was because the neurosurgeon had made every important decision in her life, deciding when her back needed to be fixed.

“He just shook my hand and said goodbye,” said the young woman. “I can’t believe he just did that.”

Graduating into High School

“There’s always a transition,” says Kamloops postal clerk, Elaine Bonderud. “My fight has always been getting the resources at school. They will always take the easy way out and that has been my most frustrating thing with Alana.”

Throughout the years, Bonderud has fought to get Alana the extra resources she needs. Alana, 15, has developmental delays, but her mother says she is borderline so is always at the bottom of the list because her needs are not as great as other children’s. The Special Needs Project has helped Bonderud pay for the extra resources when they have not been available in the school system.

Alana faced bullying in her primary school years. In Grade 7, Alana’s teacher told Bonderud that her daughter should “learn to how to cook, clean and manage her money”. The teacher wanted to put Alana, then 12, into a high school work experience class. Bonderud fought to make sure that didn’t happen.

Then when Alana did graduate into high school, “they were adamant to have her go in the resource room,” says Bonderud. Fortunately, she had just taken a course for parents of children with special needs and knew there was a modified adapted regular program available.

“I took this course and I was never more angry and frustrated at the whole system and the individuals I worked with in the past and I went forth with this new knowledge of what was available,” she said.

Bonderud challenged the high school, demanding to know why her daughter couldn’t do things like band and be integrated with the rest of her peers instead of being in the resource room and not having the experience of a regular high school.

With the support of a principal who had helped Alana when she was younger, Bonderud convinced the high school to put her daughter in modified math and English courses, but in regular food, textiles, band and physical education courses.

“By being integrated into the regular school program she also made a whole slew of friends and her self-esteem skyrocketed,” says Bonderund, whose daughter is in Grade 9 now. “She feels secure and positive about herself.”

Bonderud advises parents to always take an advocate with them when meeting with school officials. “You need somebody to back you up and be your support, someone they’ll look at who’s not the parent who, in their eyes, doesn’t have realistic views.”

The Kick Sled

We are eagerly awaiting the snow for the first time in a long time. The reason for this is the arrival of a fantastic gift from a family in Waterloo, Kelly and John Schiedel (seen in photo with Jordan and his great aunt).

A few years ago when we filled out a Member- to-Member Connection story form, we asked if anyone had a gently used kick sled we could have or purchase for a small amount. They retail for about $400. We continued to request this and other things on the newsletter for a few years with no reply, as the kick sled is not a common item. We really didn’t expect to hear from anyone about this. A few years went by and then just recently I got an e-mail from a family who told me that they typed “kick sled wanted” into the search engine and our union webpage, with a copy of the Special Needs Project newsletter, came up with MY request for anyone with a kick sled to contact me. Guess what? They contacted the Special Needs Project who forwarded the e-mail to me.

I went through shock and then total excitement as I communicated with this lovely couple in Waterloo, Ontario about their kick sled. They wanted to donate it to our family after reading my letter in the newsletter. They had a very strong feeling about their decision to contact us and so did we. I made arrangements to get out there and pick it up. The drive was just over 3 hours there and 3 hours back. My aunt, eldest daughter Amanda and of course Jordan came along for the ride. We met and chatted for a while. What a wonderful and giant-hearted couple the Scheidels are! Now living in a condo in the city, they wanted to sell or donate their sled. We are very happy the way this turned out. When the ice and snow are here, we will strap Jordan onto the seat and if needed add support to the seat so he doesn’t fall off. When Pigeon Lake freezes over, Jordan and I will be out there getting fresh air and exercise. If the sled will move on the roadside we will be sliding through the neighborhood too.

All I had to do was to pick this kick sled up and so we did. Now the story just begins as we will be learning how to use and enjoy this wonderful gift. Keep watching as we update the Special Needs Project on our adventures.

Letter Carrier

Bobcaygeon, ON

Gabriel had a very busy and hard summer. He was in and out of hospitals. Vomiting after meals was constant, and he had to do some tests. So, this was very hard for all of us. Aside from being ill, we found time to go to the beaches and community center where we swam like fish. This was a lot of fun. He needed extra care this summer. Now the therapies through the coming months are approaching. He’s starting to use AFO’s (ankle foot orthoses). It’s a special brace that comes up to his knees, so that he’ll walk normal.

Letter Carrier

Toronto, ON

We have had great success with an eye exercise specialist. She taught us very simple exercises to do with our daughter to try to get both eyes working together. Immediately we noticed an improvement in her fine motor/gross motor function. The science behind this is to exercise the eyes to their full potential, then test the eyes again and see if glasses, surgery or patching etc., is needed.

Letter Carrier

Toronto, ON

A Statistical Snapshot of Our Families

Our mid-session interview conducted earlier this year gave us a snapshot profile of families who use the CUPW-UPCE Special Needs Project. We completed 479 interviews and will be further analyzing the results to give us a more complete picture of the families in the project. In the meantime, here’s a flavour of what we found:

• 76% of families using the project are two-parent families.

• 83% of parents work for Canada Post full-time.

• 21% of parents off-shift to accommodate their child with special needs; 53% say this has resulted in lost opportunities for job advancement.

• 94% of children using the project are school age—6 years or older.

• 42% of families in the project regularly use child care services.

• The most common child care arrangement is care provided in the child’s home by a non-relative (35%).

• 67% of families using child care chose it primarily to provide care for their children while parents work or attend school.

• A number of children in child care receive specialized individual programming and additional staff for support.

Once again, thank you so much for enabling me to provide my 8 year old daughter Ashley with some summer tutoring/social skills activities. This year she is entering grade 4 and has many changes and challenges. The summer funding allowed her to not lose what she has been working on in grade 3. It is certainly helping to try to keep her on track. I would not be able to do this without your help. Please know how much it’s appreciated for Mom as well as Ashley.

MSC

Ottawa, ON

Michelina is 11 years old and in grade six at Oxford school here in Halifax. Michelina is doing very well in school and up until the beginning of (the last) school year, she always had a teacher’s helper. Just before Christmas the teachers at Oxford school who are looking after Michelina’s development and learning decided that she is doing so well that she no longer needs a teacher’s helper. She is now learning on her own.

Postal Clerk

Halifax, NS

Jennifer is now 9 years old and turning into a beautiful young lady. She suffers Trisomy 12P, a rare chromosome disorder marking her as one in forty children in the world. She is developing a lot of frustration now, as she wants so desperately to communicate. We still go through a lot of Doctor’s appointments and illness with her. It’s almost never ending, and can be extremely frustrating at times. The extra bit of financial support that we get from CUPW makes a difference and somehow seems to take a tiny amount of the stress off. Many thanks for your excellent program.

Letter Carrier

Orangeville, ON LC Brampton North

Being a single mom of a learning disabled child, I would like to say thank you very much to the CUPW Special Needs Project. Along with the much appreciated financial help, the information that I have received from Norma my advisor has opened many doors to needed support to help my son in his education process. Thank you.

RSMC

Wasaga Beach, ON

I am so proud of my daughter Stephanie. On Oct 7/05 the Honours Society for academic achievement will award Stephanie at her school for obtaining an 80 overall average. She pulled from 60’s to 80’s in her marks last year.

Letter Carrier

London, ON