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In Our Way
Child Care Barriers to Full Workforce Participation Experienced by Parents of Children with Special Needs - and Potential Remedies

Sharon Hope Irwin - Director, SpeciaLink
Donna S. Lero - University of Guelph, Centre for Families, Work and Well-Being

The Study
Ongoing Stress
The Project


All parents in the paid workforce face challenges balancing their work and family responsibilities. But for parents of children with special needs, the juggling act also involves economic penalties in the form of extra expenses and foregone employment income, as well as added stress because of inadequate child care, workplace and social supports. These are the major findings of In Our Way: Child Care Barriers to Full Workforce Participation Experienced by Parents of Children with Special Needs, a Canadian national study on workforce barriers for parents of children with special needs.

The study is the first Canadian research on how employed parents of children with special needs, estimated to comprise 6 to 10% of children in Canada, juggle work and family responsibilities. It was sponsored by the Canadian Union of Postal Workers and undertaken by Drs. Sharon Hope Irwin and Donna S. Lero.

The researchers surveyed 151 postal worker and non-postal worker families across Canada whose children have special needs. They found that a significant percentage of parents were either unemployed, underemployed or worked part-time because of the demands of their child's disability or health condition.

  • 39% reported their employment status had been affected;
  • 26% reported that their choice of occupation had been constrained;
  • 46% said their work schedules had been affected;
  • 68% had turned down overtime;
  • 27% had to forego opportunities for promotion; and,
  • 64% of two-parent families with one parent unemployed reported their child's special needs were a major factor in the unemployment.

Mothers' employment was far more likely to be affected by their children's needs for care and support, and the extra logistics of balancing work and family responsibilities.

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Moreover, 88% of parents said they felt tired and overloaded, and 90% said they were stressed about balancing work and family obligations. A major cause of stress was the lack of access to appropriate, affordable licensed child care. Typically, children were cared for by parents or a caregiver in the child's own home, and parents had few backups in case a child care arrangement ended or broke down temporarily. Parents also worried about whether the caregiver or program could be flexible when needed, the high cost of care, and whether the care provided was the best for the child.

Many parents in dual-earner families reported working opposite shifts to provide economic stability and meet the special needs of their child. But they had little time for themselves or as a couple. As well, they were often exhausted, especially those working regular night shifts, whose daytime child care responsibilities left little time for sleep.

"It takes a long time to feed her and dress her because of her cerebral palsy," said one parent. "Then, after school, which ends at 2:30, she really requires a lot of tutoring and extra help from me, if she's going to keep up at all. I never get enough sleep."

The postal workers union commissioned the study after a needs assessment of its members revealed that child care for children with special needs was a major issue. The shift work, extended hours and weekend work at the Post Office magnify the child care challenges faced by traditional "9 to 5" workers. The union feels that negotiated workplace supports are critical to help parents in the workforce meet their family and work obligations.

"We thought that the postal worker parents and those in the reference group would be very different," said Irwin. "But there were lots of parents in the reference group who also worked back shifts, split shifts, left regular jobs and had to opt for non-traditional employment arrangements to meet their child's needs."

A variety of supports needed:

The study shows that while parents of children with special needs face the same problems as other employed parents, the intensity, availability, cost and duration of their child care needs are different. Parents said they needed a mix of flexibility, services and support to help them cope, including:

  • formal workplace policies and benefit provisions, such as extended health plans to cover additional expenses for their children's special needs;
  • paid special leave for emergencies and paid family responsibility leave, since many parents use their sick or vacation leave, or take unpaid leave for emergencies, or when their child is ill or has a medical appointment;
  • flexibility in schedules and workload;
  • stability in work scheduling for temporary or casual workers to help them plan child care;
  • assistance with child care provision and child care costs; and,
  • increased awareness and sensitivity of employers, unions, co-workers and the public to the challenges of parenting a child with special needs.

Parents also expressed fears about losing already fragile community-based resources because of government cuts to social programs. These cuts threaten the access of children with special needs to therapy, assessments, medications and assistive devices.

In addition to contractual conditions specific to CUPW and educational materials for co-workers and supervisors, the study recommends the development of progressive public policies to help parents juggle family and work. These policies include a comprehensive national child care program, promotion of employment and pay equity, and honouring ILO conventions on the rights of workers with family responsibilities to equitable treatment in the workplace, and equitable treatment of persons with disabilities.

"The basic child care issues parents face in today's social and economic climate, and the additional challenges faced by parents of children with special needs, require much more than ad hoc solutions," said Lero. "We need strong, comprehensive family-supportive policies that help all families in Canada meet their work and family obligations."

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The research resonated for the Canadian Union of Postal Workers (CUPW) - showing how their members who have children with special needs experience enormous stress over child care related issues, how they use their vacations for hospital visits and care of sick children, how their child care arrangements are so fragile and without back-ups, how cutbacks in educational, social, and health services make their ability to juggle work and family even more difficult.

The union decided to act on the research, to design a project to help level the playing field somewhat-helping its members who have children with special needs, by bringing their child care related costs and opportunities closer to that of other members who are parents.

The members had said they needed funding of course, but they also said they needed technical assistance in finding services, consultation in developing options where there weren't any, understanding from fellow members, and connections with other members who were dealing with similar issues.

The project started in Summer 1996, when 105 members participated. Members had pointed out the extra difficulties of summer - when schools and developmental preschools are closed, and when many community programs are not accessible to their children.

The project criteria had to be clear regarding eligibility criteria as well as about eligible uses. It had to provide a flat rate of funding for each child, rather than a variable one. The process had to be accountable, but at the same time not add to the paper burden that members were already facing. It had to use a variety of mechanisms to get its message to members across the country in a very short time. It had to find knowledgeable people across the country who would help members find or modify services to meet their children's needs. And it had to have a strong evaluation component, in order to build improvements and to monitor its effects.

Working closely with the Union, SpeciaLink took on the project design and administration role, hiring respite workers, early intervention workers, family support workers - all on a part-time basis - to consult regularly with parents. They tried very hard to arrange for members to reach a real person - not an answering machine - when they made their first telephone call to the project. Members heard about the project through Union bulletins, the union newspaper, from shop stewards and union officers, from members who had been involved in the research project, and even from provincial disability associations who heard about it.

The results of the first summer's project were astonishing. Members reported substantial decreases in their own stress, in their spouses' stress, in the well-being of their children with special needs, in their other children's responses, and even in community programs. Members also reported increased pride and respect for their union, and increased capacity to act as advocates for their child and information sources for other members.

Here's one story:

"One CUPW member phoned to find out whether her 7-year old son was eligible for the project. Since she did not get a summer vacation, she needed to arrange for a day camp or a recreation program to cover her child care needs. Her son wanted to go to a soccer camp. But being a severe diabetic, he required frequent glucose tests and insulin injections. And the camp was not willing to take on that responsibility.

Our first idea was to provide funding to educate the camp staff about diabetes, about glucose tests and insulin injections. The member said she'd already suggested that.

Our second idea was to provide funding to bring a health worker to the camp in the morning and afternoon, at regular times, to do the glucose tests and insulin injections. The member said that this wouldn't work either. Sometimes her son would play very strenuously, and need his insulin earlier.

We were out of bright ideas then, and asked whether there was a camp for children with diabetes in her area. She said that she thought so, but before choosing that option, she wanted to think about it.

Next day, the member called back, and said, 'I have another idea. I've found a 17-year old boy, who is also an insulin dependent diabetic, who wants to work in recreation. Could the project pay him as an aide at the camp?' The answer was 'yes'.

The member's son had had a wonderful experience. By the end of the summer, the 17-year old was hired by the camp for the following summer. And the camp was comfortable with diabetes, ready to take on additional challenges of inclusion!!"

Another member used the funding for materials for a ramp at a child care centre. The centre had said her child was getting too heavy to lift up the stairs. He'd attended the centre as a preschooler, and with the ramp, after school child care was now accessible.

Still another member told us that "sleep" was his problem. He'd been off-shifting with his wife for six years, taking over child care responsibilities after his night shift. Between helping his child to eat, dressing her, taking her to school, picking her up at school, and helping her with her school work, he was always exhausted. The funding enabled the family to use summer child care. And while we can't take credit for the rest of this story, it wouldn't have happened without the project.

One day that summer, the member and his wife were both home at the same time because of a one-day closure at her workplace. She said, "Since our daughter is going to child care, you can sleep. And I'm going to take my mother to lunch." They decided to go to the Casino in Sydney, Nova Scotia for that lunch. And after eating, the wife put a loonie in a slot machine. And won $5000!! (Which was later spent on a variety of child related things which I don't have time to tell you about.)

These stories are just a few of dozens from that first summer - of arrangements that were better that they would have been, had the project not existed. All of them are about "leveling the costs" - about making the arrangements closer to what other parents pay, and about reducing the emotional costs of parenting a child with special needs.

Over the three years of the project, the number of participating members has grown from 105 to over 250, and the project has had impacts beyond its effects on individual members. These members are "a canary in the mine" for the Union, highlighting issues that face them more frequently, more intensely, and for longer than they face other members. "Special leave", increasing uninsured health-related expenses, declining educational and social services are three areas that received particular emphasis.

We're beginning to hear from other unions about this project, and have been told by U.S. researchers that it is unique in North America, and maybe in the world. Availability of the Report in both French and English, its launch at a symposium of the Canadian Labour Congress, presentations at various conferences and workshops, and the national media attention it has received will alert unions, employers, governments, and social activists about the issues facing parents of children with special needs, as they try to balance necessary employment and family responsibilities, and hopefully lead to more equitable opportunities for these parents.

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