Child Care Barriers to Full
Workforce Participation Experienced by Parents of Children with
Special Needs - and Potential Remedies
Sharon Hope Irwin - Director, SpeciaLink
and
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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SpeciaLink: The National Centre for Child Care Inclusion
76 Cottage Road,
Sydney, NS B1P 2C7
Phone (902) 562-1662
FAX (902) 539-9117
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