Proceedings
of the
First National Roundtable
on
Children with Disabilities
Ottawa, Canada
December 9-10, 2002
Table of Contents
December 9
December 10
Funding for the roundtable was provided by
The Hospital for Sick Children Foundation
Human Resources Development Canada
and
Health Canada
December 9 - Opening Plenary
Opening Remarks
Pauline Mantha, Learning Disabilities Association of Canada
Pauline Mantha welcomed roundtable participants on behalf of the National
Children’s Alliance (NCA). She hoped this timely gathering would
provide each participant with the opportunity to engage in a rich exchange
of ideas. Today’s discussions will help to influence the future
work of the NCA, she said.
She then took a few minutes to recognize those who worked to ensure
the success of this roundtable. She concluded her comments by encouraging
everyone to have fun and to explore the issues that affect children
with disabilities and their families.
Panel Discussion : Grounding the discussion
through the lens of the child and family
Introduction: Peter Dudding, Child Welfare League of Canada
Peter Dudding introduced the session, saying it was an appropriate
vehicle to begin this roundtable because its focus reinforces the necessity
of a rights-based approach to participation in civil society.
Citizenship: Fraser Valentine
Fraser Valentine said his comments would be based on a report he developed
for the Canadian Policy Research Networks (CPRN), an organization committed
to progressive research on social issues.
He said the report’s overall finding was that the status of children
with disabilities and their families falls short of what is necessary
to ensure full citizenship. In addition, there is no pan-Canadian vision
to change this situation. The Agreement on Early Childhood Development
Initiatives signed between the federal government and the provinces
(except Quebec) demonstrates an emerging pan-Canadian vision for young
children; however, it does not include school-aged children with disabilities,
a group that largely falls outside the government’s policy focus.
“What is citizenship and what do we mean by full citizenship?”
he asked. In its broadest terms, being a citizen means “having
the rights and responsibilities associated with being part of a group,
community, or country.” However, citizenship is more than formal
rights and responsibilities; it also includes a social dimension that
encompasses the notion that members of society are responsible for each
other. A key element to understanding full citizenship is to answer
the question, “Who is assured access and under what conditions?”
There are three dimensions to full citizenship:
- Rights and responsibilities
- Access (to work, income, education, technology, social protection,
etc)
- Belonging
Full citizenship means having equal capacity to exercise each of the
three dimensions stated above.
Valentine said he believes the current situation for parents of children
with disabilities falls short of full citizenship. Patterns of exclusion
exist. For example, community supports are not yet recognized as central
components of a citizen’s rights. In addition, time and resource
constraints often isolate parents of children with disabilities from
each other and from their broader community.
He asked how those who are intent on putting policy into action could
ensure that citizenship is realizable for children with disabilities
and their families. The time has come for all governments to make all
children—including those with disabilities—a priority, he
said. Formal rights must be made real for everyone.
To begin with, the demands placed on the families of children with
disabilities must be acknowledged by providing them with the tools they
need to balance work and family life. Efforts must also be made to ensure
access to an inclusive base of generic supports and services. A package
of portable supports that will be available to all, regardless of where
they live in Canada, must also be provided. Valentine added that a sense
of belonging needs to be fostered in communities. Finally, the national
children’s agenda must be expanded to include school-age children
with disabilities.
To accomplish these goals, strong democratic institutions are needed
and persons with disabilities must be encouraged and supported in the
political process. Community-based organizations require more financial
support, and a sense of meaningful dialogue is needed throughout the
policy development consultation process, Valentine said.
Her Story: Barb Horner
Barb Horner showed the group a picture of her family and introduced
her daughter Mallory. Mallory—who is 17—is extremely bright,
funny, and determined to be heard, Horner said. “She has been
my teacher.”
She described the early years of Mallory’s life—about the
daily stresses and struggles they faced as a family because of the lack
of policy commitment and political will. However, Horner said, she fell
in love with Mallory the moment she was born.
Mallory’s disabilities meant she required much medical attention
when she was born. After several weeks in the hospital, Mallory came
home. After the family’s move to Nova Scotia, they were told that
they could have $52.50 per month to care for Mallory at home or they
could put her in a centre where her care would cost $200 per day. The
difficult, although temporary, decision to place her in a centre was
one that Horner says she regrets.
When Mallory reached school age, Horner said that they wanted to place
her in a fully inclusive setting. Mallory has had a wonderful school
life, because the family has been involved every step of the way to
ensure she has had the same opportunities as her brother, Horner declared.
Nova Scotia has one funding program—the In-Home Support Program—that
is geared to income. While it is not common, Horner receives funding
for a budget tailored to meet her individual needs. “That allowed
us to build a support team around Mallory,” she said. In-home
support and respite options enable Mallory to have the same opportunities
as other teenagers to develop a life away from her family.
Although funding may change when Mallory turns 19, the individualized
funding needs to continue to allow Mallory to remain at home for as
long as she wants to. “We need to plan her future together with
peace of mind, knowing that she is valued, respected, and an integral
part of the community,” she said.
Horner said that her journey with Mallory should not have been this
difficult, and that the future should not be this frightening. She read
the group an essay written by one of Mallory’s friends describing
her as kind, gentle, intelligent, and polite. The essay concludes with
“even though Mallory has CP, she is my best friend.” The
future is with our children as they understand intuitively “that
Mallory deserves a future where her right to belong is not questioned,”
said Horner.
His Story: James Cincotta
James Cincotta told the group that he changed from a happy, active
child to a sad, secretive child following his first three years in elementary
school. He said his mother did not blame him for this change; she blamed
the school for not being able to teach him. After this early frustrating
experience, he was enrolled in an alternative school that focused on
his potential. He had great success in that school and graduated from
Grade 12 at the top of his class.
His first years of university brought him back into a “normal”
school setting and he did not fare well. With help from the university
psychiatrist, he was diagnosed with learning disabilities. “This
answered many questions and it provided me with options.” As a
student with a disability at McGill University, Cincotta received the
services that he required to succeed academically. He went on to receive
a Master’s degree from Concordia University.
He is currently focusing on learning different pedagogical models.
He said he feels that inclusion does not always address the needs of
children with disabilities. Under the “inclusion banner,”
children are often corralled into classrooms without the support they
need.
In order for children to succeed, Cincotta said, the following six
points should be considered whenever there is discussion about policy
decisions in the classroom:
- Early identification and multidisciplinary assessments
- An individual education plan
- The human, physical, and material resources required by both teachers
and students
- A school environment where learning disabilities are understood
and accepted
- Outcome indicators that allow for evaluation
- Frequent communication regarding progress
He added that early identification is key; it should happen as systematically
as immunization. “Early identification fosters better outcomes.”
Cincotta said that being diagnosed with a learning disability was the
best thing that ever happened to him. “It was like putting on
a pair of glasses for the first time. It shifted the focus from me to
a disability that I could understand.” He acknowledged that some
people feel that labelling hurts children, and noted that it is unhealthy
to allow children to fail and to develop harmful patterns of behaviour.
He asserted that labelling actually empowers children, allowing them
to build their own futures.
Questions and discussion:
A participant asked the panelists about the role of parental choice
in the area of inclusion. How does one balance inadequate resources,
parental choice, and the focus that is placed on simple placement
in the “mainstream”? Horner said that there is concern
because parents have never been involved in the educational decision-making
process. The lack of resources affects how every child is educated.
Valentine stated that the range of services available at the school
board level across the country should be redressed by legislation.
Cincotta agreed, adding, “If you have a disability, that disability
should be portable from coast to coast.”
Responding to a question about how to define the responsibilities
of persons with disabilities, Valentine said responsibility includes
voting and becoming actively engaged in the political process. However,
persons with disabilities need to have access to the resources that
allow them to exercise these and other responsibilities.
In response to a question about what parents and advocates can do
to move governments on this issue, all the panelists called for mass
mobilization. Work together to put pressure on all levels of government
to deal with this complex issue, Valentine said.
A participant noted that Valentine had left “dignity and equality”
out of his definition of citizenship, and he said that when one speaks
about “access” it should refer to “equal access.”
Continuing in the area of language choice, he said that labelling
has had a pejorative connotation in the past; he suggested using “identification”
instead.
Luncheon Presentation
Implications of current data practices: Satya Brink, Acting Director,
Child, Youth and Social Development Studies, Human Resources Development
Canada.
Satya Brink said the roundtable provided an exceptional opportunity
to present some “hot” information-data that was just released
the week before. As it constitutes evidence, data is fundamental to
show the condition of Canadians, whatever their situation.
“When we talk about research on children with disabilities, we
must look at them the same way we look at all other Canadians-that is
through their life cycle,” she said. The national vision is to
achieve the “full integration of persons with disabilities into
Canadian society.”
Brink described ways to accomplish this vision. First, convert the
concepts of inclusion and equity into outcomes, and measure these outcomes.
She added that equality does not mean treating everyone the same but
ensuring that the outcomes are the same for all people. Then, look at
outcomes at specific stages of life, she said. The concept used when
measuring outcomes is that of “reasonably close parity”
with outcomes for other Canadians, such as learners, workers, family
members, and citizens.
The second important element is the trajectories. The objective is
for the outcomes to be similar in their timing of occurrence, in the
sequence of life events, and in the experience of people with disabilities,
she explained. In children’s cases, it is important to see how
they proceed through life, what the dynamics of their disabilities are,
and how resilient they are.
She described the two main sources of information available. The National
Longitudinal Survey of Children and Youth (NLSCY) is a survey of Canadians
from birth to adulthood that provides a single source of data for the
examination of child development. It includes questions on physical
disabilities, chronic health conditions, and activity limitations, and
focuses on outcomes and trajectories. Its main limitation, she said,
is its low sample size. The Participation and Activity Limitation Survey
(PALS) is a post-census survey that collects information about people
whose everyday activities may be limited because of a health-related
condition or problem. It provides information on prevalence and who
uses what supports, but does not look at outcomes or trajectories. It
focuses on counting, not measuring.
Alluding to the morning’s discussion on labelling and identification,
Brink said the identification of children with disabilities is very
important in order to prove they exist. Responses to the question “Are
you limited by a health condition or problem?” asked in PALS indicate
that 3.3 per cent of children zero to 14 years old reportedly have a
disability. Brink pointed out that the survey used a standard filter
question. If a definition similar to that used by PALS is used, the
NLSCY indicates that, for children zero to 15 years old, 5.5 per cent
have some activity limitation because of a health condition.
“What data do we have?” asked Brink. She presented a number
of overheads showing graphs of the distribution of disabilities by age,
sex, and type of disability. She stressed the importance of remembering
that this information is self-reported. According to the data, more
boys than girls zero to 14 years old have a disability, while more women
past the age of 25 seem to have an activity limitation due to a physical
condition. The proportion of children with disability is higher in single
parent families and for children whose mother is not a high school graduate.
She then presented a series of overheads on outcomes, comparing learning
outcomes for children with disabilities with national averages. Learning
outcomes, she said, are often close, as are social outcomes for indicators
such as the number of close friends a child has. To get good evidence,
Brink concluded, good data is needed.
Panel Discussion: Policy issues through
the lens of research and practice
Introduction: Janis Douglas, Canadian Association for Community
Living
The objective, said Douglas in her introduction, was to look at how
research can influence policies.
Highlights of the Roundtable Background Paper: Louise Hanvey
Louise Hanvey, a consultant in the area of children’s health
and well-being, presented selected highlights of the discussion paper
she prepared for the roundtable. The purpose of the paper was to provide
context and stimulate discussion. She said her intention was to be child-
and family-centred and look at children with disabilities in the context
of their families and communities.
Hanvey quoted the percentages of children with disabilities given by
the National Population Health Survey (7.7) and by the 1991 Health and
Activity Limitations Survey (7.2).
Economic insecurity is part of the “stark reality of children
with disabilities,” Hanvey said, and although the dynamic of the
relationship between disability and poverty is not clear, hunger is
more prevalent in poorer families. Other important information included
the fact that many families need two incomes to meet their financial
needs while facing employment barriers, especially in the area of child
care and flexible work hours.
Important qualitative research is also being done in Canada, she said.
For example, families with children with disabilities often spend 50
to 60 hours a week on personal care, advocacy, co-ordination of services,
and transportation, all of which affect their well-being. “Mothers
are clear-the stress is caused by the lack of support, not by their
families. They also talk about the positive gains of caring for children
with disabilities.”
There are a number of programs and services in place, but access remains
a problem. One of the difficulties for families is “complying”
with the means test and having to humiliate themselves and focus on
the disabilities to get the help that is needed. “Some choose
not to,” she said.
Young people often define inclusion in terms of their friends. Eight-two
per cent of 11 to 16 year-old children with disabilities in Ontario
report having more than one close friend, Harvey added.
She also raised the issue of safety. Children and youth with disabilities
are more likely to be physically, sexually, and emotionally abused.
Harvey concluded that many challenges remain in creating a Canada that
includes all children. There are problems to be solved in the areas
of data and measurement. More attention must be paid to the issue of
transition into the adult world for children with disabilities, and
to groups with a double or triple disadvantage, such as Aboriginals,
people in the North, isolated communities, and immigrants.
Research Influencing Policy: Mary Anne Burke
Mary Anne Burke, director of research at the Roeher Institute, briefly
described the Institute, saying it is a “global centre for advanced
and applied policy research on disability issues, grounded in human
rights and the lived experience of persons with disabilities and their
families.” An important part of the Institute’s work focuses
on communities. Often these are not inclusive, and the human rights
and needs of children with disabilities are not met, which can make
them feel unvalued.
Devaluation starts before birth, Burke suggested-words like “abnormal,”
“defect,” and “burden” are used to talk about
genetic and other differences-and continues after birth, with parents
receiving “condolences” for the birth of their “abnormal”
baby who is labelled “defective,” “disordered,”
“diseased,” or worse, “a vegetable.” Doctors
offer to “fix” the child or, if it is not possible, to “relieve”
parents of the “burden” of caring for them. This results
in feelings of isolation, shame, or social irresponsibility for parents
as well as low self-esteem and poor mental health for the children.
Children with disabilities are denied their childhood, said Burke.
Many grow up in poverty, and in unemployed or stressed families due
to the lack of support. They are often prevented from attending local
daycares, schools, and recreation programs-all places where they could
“be children and gain social and citizenship skills.” Even
for those who do attend, resources are often lacking to support them
and allow them to fully participate and benefit. Statistics show, however,
that people with disabilities who have not attended regular programs
are less likely to continue in higher education and have lower levels
of educational attainment and lower incomes later in life.
The attainment of inclusive communities, Burke explained, requires
an understanding of the context in which policies unfold and what inclusion
means at the community level. It also means being able to measure and
monitor inclusion. For that, better data is needed that will allow for
better measurements of the inclusivity of community resources, programs,
policies, and services, but also of the outcomes of inclusion.
The Roeher Institute has developed instruments to measure inclusion
and generate data at the community level. These instruments are built
around a set of assumptions about the dignity of persons; the value
of diversity, and the role of families and communities in supporting
the healthy development and inclusion of all persons; shared principles
(dignity, equality, diversity, autonomy, and justice); inclusion criteria;
and personal and interpersonal descriptors and co-requisites (family,
school, community and policy factors that play a role in shaping well-being
and healthy development). These instruments include:
- A policy assessment instrument that measures the degree of inclusion
in a policy or program’s philosophy, legislation and regulations,
standards and guidelines, services delivery models, policies, programs
and practices, budgets, staffing and monitoring, and evaluation frameworks;
- A program assessment tool that examines a number of elements such
as the physical environment, the attitudes of boards of directors,
individual program plans, and the involvement of parents and children;
and
- A community profile instrument to identify whether the needed community
supports are available, accessible, flexible, integrated, and to assess
the inclusivity of community planning, delivery, and evaluation processes.
Burke also talked about the use of an analytical framework to identify
and eliminate bias, because “understanding bias points to solutions.”
Environmental Issues: Miriam Levitt
Miriam Levitt, vice-president for research, policy and programs, Canadian
Institute of Child Health (CICH), started her presentation by sharing
CICH’s mission statement with participants: “promoting and
protecting the health, well-being and rights of all children and youth
through monitoring, education and advocacy.”
The effects of environmental contaminants start before birth, Levitt
explained, and can be felt by the immune system and the reproductive
and endocrine system. They can also affect the IQ and result in learning
disabilities, behavioural disorders, and birth defects.
The processes of growth and development make children more vulnerable
than adults to the effects of contaminants. Some of the reasons for
this are that children have a higher metabolic rate, higher levels of
physical activity, lower plasma protein-binding capacity, immature hepato-renal
and gastro-intestinal functions, and a higher dermal absorption. Their
behaviours also increase their vulnerability. She mentioned their dependency
on adults, breast-feeding, hand-to-mouth activity, floor play, and nutritional
habits.
Among the contaminants of clinical concern, she listed metals, pesticides,
persistent organic pollutants and solvents, and volatile organic compounds.
She said that asthma prevalence among children up to the age of 19 is
constantly increasing. Other worrying trends include the frequency of
problems with hyperactivities and the shift to the left of IQ distribution,
with the number of people with an IQ inferior to 70 (the clinical definition
for mental retardation) that has doubled over the last decade.
Children are exposed through multiple paths:
- The air they breathe indoors (tobacco smoke, dust mites, combustion
gases, compounds that “outgas” from glues, solvents, and
other products);
- The air they breathe outdoors (nitrogen oxides, sulphur oxides,
ozone, particulates);
- The water they drink and bathe in (biological and chemical contaminants);
- The food they eat;
- Various products around the house and garden (cleaners, solvents,
pesticides, paint, lead, toys, and household products); and
- “Whatever is in the environment that gets into us and our
children.”
CICH has a number of ongoing projects:
- The Canadian Health Network, that assesses and selects the information
made available over the Web to people and answers information requests;
- Healthy Spaces, a Web-based project for parents and caregivers that
focuses on child-centred spaces;
- The Voluntary Sector Initiative: Children’s Environmental
Health that focuses on capacity building for policy development and
facilitating policy change;
- The Cuban Environmental Tobacco Smoke Initiative aimed at protecting
children from harmful environmental tobacco smoke;
- The Argentina Initiative, Measuring the Environmental Impact on
Children’s Health in the Southern Core; and
- The PALS initiative.
In conclusion, Levitt said the actions needed for protecting children
from contaminants include new children’s environmental health
markers, a new paradigm for children’s environmental health assessment
that includes multidisciplinary research, and an informed public and
responsive industry. Practically, public health inspectors must look
for flaking paint, the way products are stored, signs of mould, pressure-treated
wood, and pesticide use.
Reports Back from Small Group Discussions
Facilitator: Cynthia Taylor
Cynthia Taylor asked the participants to report back on their small-group
discussions around the question, “What one change do you see yourself
making?”
The representative from the first table said her group had concluded
there was a need to increase awareness and to take the results of this
roundtable back to their communities to influence the work they do.
They also spoke of the need for greater and stronger advocacy.
Responding to a previous comment about the fact that “equity
and equality are not equal,” the next group said that the National
Longitudinal Survey on Children and Youth (NLSCY) should conduct research
on learning disabilities.
Another group representative said there are too few resources available
for the families of children with disabilities. The group’s discussion
focused on the perspective of the deaf, she said, where inclusion has
a different meaning. It is important that parents be offered more choices.
In addition, children suffer because of government policy regarding
language in the classroom, specifically the exclusion of American Sign
Language.
Additional information from the Roeher Institute is needed about their
evaluation instruments, she said. There is also a lack of data. It will
be important to look at the NLSCY and the PALS and determine who was
included in each survey. It is also important to look at the support
families receive and to make the necessary resources available to them.
Another group was also interested in tools, specifically those that
would elicit feedback from families receiving services. In addition,
there should be some commonality regarding evaluation, one participant
noted. A significant current challenge is that children with disabilities
are lumped together as a group with the burgeoning population of seniors
with disabilities. The different needs of children with disabilities
and their families must be kept at the forefront of discussions, she
said.
Another participant said his group also spoke of the importance of
having a unified voice. It is imperative that the issue of children
with disabilities be moved from a charity to a human rights model to
“bring them to centre stage.” The focus must be on abilities
rather than deficits.
The next representative said her group focused on the need for children
with disabilities to be recognized as full citizens.
Another small group discussion focused on the need for research and
concluded that time should be spent reviewing the research instruments
and the resulting data. Data cannot merely be accepted without question.
Culturally appropriate testing instruments and definitions are also
needed, she said.
Families are the most effective agents for social change, said the
next small-group representative. Families need to talk to each other
and increase their political activity. A national program for individualized
spending is also needed.
A pan-Canadian vision is required, with the data to support it, said
a participant. The data collected should also use similar methodology.
Another group talked about labelling, in light of the morning presentation.
It is imperative to do whatever it to takes to get the right kind of
help for children with disabilities. Also, families living in remote
areas must have access to the resources they need. Too much money is
spent trying to decide what families need instead of getting the money
to the families, she said. Data needs to be analyzed and validated in
the communities. It is also important to examine what policies are in
place at the community level and how they are implemented on a day-to-day
basis. There is also a need to help staff in childcare settings, advance
inclusion, and help foster friendships.
The key message from another group was the need to advocate and create
a single voice across the country to effect change. Enlisting the media’s
help in this cause is important, he said. The instruments used to collect
data should be questioned and the data must be both quantitative and
qualitative. Better instruments are needed that measure both policy
and program impacts at the community level. Education initiatives need
to be furthered and information shared. In terms of action, the available
information to influence agenda setting must be used in a strategic
way, he said. Also, provincial and federal squabbling must end. The
Romanow Report provides an opportunity-it fostered a national discussion
on vision and principles instead of money. It is also important to create
a Canada Health Transfer to free up money for social services, he said.
A common thread in another group’s discussion was the need to
change the kind of language used to discuss disability. Silos need to
be broken down.
The next representative said her group discussed the need for quantitative
and qualitative data.
The first concern should be the need to respect and understand more
fully the needs of all children with disabilities and their parents,
said a group member. He described a report on Fetal Alcohol Syndrome
(FAS) in the Northwest Territories that was released in 2000. It spoke
of the catastrophic effect of FAS, results that were verified by Health
Canada.
A child welfare database is needed, said another participant. There
are a growing number of children in need across the country, he said.
As the visibility of the obstacles faced by families increases, so does
concern about the role of child welfare agencies.
Another group agreed on the need to find areas of commonality in order
to take action and move forward. Information needs to be shared in order
to reduce the isolation that the parents of children with disabilities
often feel. This will lead to hope.
The last small-group representative said that taking action with a
common goal is needed. The information that was shared today must be
shared in our places of work, our homes, and our communities. The NCA
could be used as a starting point, she said.
Book Launch: Moving Mountains: Work, Family
and Children with Special Needs
Denis Lemelin, 2nd National Vice President, Canadian Union of Postal
Workers (CUPW) said that the CUPW book, Moving Mountains: Work, Family
and Children with Special Needs, is a concrete example of what can be
done to provide support to parents of children with special needs.
CUPW represents 50,000 national postal workers, most of who work outside
the traditional 9-to-5 shift. This latter fact poses additional problems
for working families. In 1995, CUPW focused on ensuring that its members
had the kind of childcare (for example, community-based, non-profit,
high quality, and providing services for children with special needs)
that every child in the country should have.
The results of a survey of its members told CUPW about the difficulties
faced by parents of children with special needs (for example, lack of
adequate programs, increased costs, and inflexible work schedules).
With the results of this survey, CUPW went to the community in order
to better understand the issues. Groundbreaking information surfaced
on the types of barriers that families of children with disabilities
face, and the union knew that it was time to take action. The book chronicles
the seven years that it took to put the program in place, he said.
In addition, CUPW launched an extensive education program that included
a five-day course that had special needs as a key element.
Feedback from members also focused on the need for improvements to
the benefits to which workers were entitled. This led to the creation
of a $12 million per year Child Development Fund.
It is hoped that this project will not only support individuals but
will also impact on public policy development and spur additional change
at the government level.
CUPW is very proud of this book, he said, because it gives a voice
to its members and their experiences. He concluded by stating that helping
working families is a shared responsibility.
Jamie Kass, CUPW National Child Care Coordinator said that the CUPW
program includes individualized funding of $100 per month for part-time
care and $200 per month for pre-school/full-time care. Recipients can
use the funding as needed. The program supports 443 members with over
500 children in every province in the country.
CUPW also has 38 special needs advisors in place across the country.
These individuals keep in touch with the union membership to identify
additional services that may be required by families of children with
special needs. The advisors also help families through transition periods
(e.g., pre-school to school).
There is also an education piece to this initiative that includes a
newsletter, which is published three times per year. The success of
the project is also evaluated.
Gwen Holmes, CUPW member and parent of two children with special needs
said that she became an active union member as a direct result of the
Child Development Fund. This Fund moves the union away from its traditional
focus on wages and grievances to becoming a strong advocate for children.
Children are the “canary in the mines,” she said. The impacts
of cuts affect them first, but then filter down to other children and
families. She then read from the book about a five-year old boy with
cerebral palsy.
Joanna LaTulippe-Rochon told the group about Cape Breton Family Place
Resource Centre, the home base for CUPW’s special needs project.
“We are dedicated to shifting things to ensure opportunities for
participation for all members of society,” she said. The focus
must be on our shared responsibility, she said. This project is a prime
example of union, management, workers, and business working together.
It is also imperative that society “filter public policy through
a family-focused lens,” she said.
Mr. Lemelin said that the future of the fund includes the provision
of additional funding and an extension of services to children over
19 years of age.
Dinner Presentation
A World Fit for Children: The Honourable Landon Pearson
Introduction: Sandra Griffin, Canadian Child Care Federation
Sandra Griffin said that it was a great pleasure to introduce the Honourable
Landon Pearson—a woman who has accomplished great things in her
life. “No one has done more for children’s rights in Canada,”
she said.
Senator Pearson thanked Griffin for her warm introduction. She said
a letter would be released on the following day that will ask interested
parties to take part in preparing a National Plan of Action in order
to fulfil the governmental commitment undertaken at the United Nations
Special Session on Children in May 2002.
“The Prime Minister has asked me to continue as his personal
representative in this process,” she said. Part of that responsibility
is to ensure that Canada respects its international commitments to children
and to communicate with as broad a representation of Canadian society
as possible, including children and youth. “I am fully committed
to doing this.”
The National Plan of Action will be based on A World Fit for Children,
which is available on the Senator’s Web site.
The Government of Canada firmly believes that the Convention and A
World Fit for Children strongly supports the central role of parents
and families in safeguarding the rights of children, Senator Pearson
said. These documents also reinforce the role of the state and the duty
of all members of society to help families meet their basic needs and
fulfil their responsibilities. The government is very mindful of the
special needs of families with children with disabilities, she added.
A World Fit for Children was negotiated over a three-year
period by nations from around the world. It contains a Plan of Action,
which focuses on four main themes:
- Promoting healthy lives;
- Providing quality education;
- Protecting against abuse, exploitation and violence;
- Combating HIV/AIDS.
Special issues have been identified within each of these themes. She
said she hesitated to include many of these issues in the call letter,
because she did not want to direct the process. The intent is to throw
the ball out to a wide population and see what responses are received.
The Plan of Action also names a number of mechanisms that will have
to be in place if the nations of the world are to be successful in improving
the situation of the world’s children. The document calls for
structures to protect and promote the rights of children at the national
level, capacity building, research, monitoring, and evaluation. All
these structures underline the importance of building partnerships—both
for and with children.
She urged participants to read A World Fit for Children, and
to take time to “imagine the Canada and the world that you would
like to see in the year 2015.” The deadline for submissions is
January 31, 2003. She asked respondents to list their priorities for
action on behalf of children-in Canada or abroad or both-along with
their strategies for achieving these priorities and, finally, to identify
any emerging issues of concern.
The first draft of Canada’s National Plan of Action will be ready
by the end of February 2003 and posted on the Web site. Consultations
are planned for the spring. The second draft will be prepared by June
2003 and the final draft will be written over the summer. It will be
submitted in its final form to the UN in December 2003.
The intent of this process is to “ensure that we put together
the shape of a national plan that will hold as firm as possible for
the next 10 years,” Senator Pearson stated.
She asked participants to share the letter with others. She also urged
them to keep their responses as short and focused as possible. “Do
not feel that you have to tackle the entire world,” she said.
“Instead, focus on the things that you know most intimately.”
She stressed the importance of youth participation in this process.
Canada was the first country to include youth as part of their UN delegation.
By the end of the Special Session, over 100 countries had included youth
in their delegations. This gives authenticity to the experience, she
said.
Zuhy Saheed of the Canadian Association for Community Living thanked
Senator Pearson for her thoughtful words. She said that she had had
an opportunity to work with the Senator and to see her commitment and
tenacity firsthand. “Without her, there would be no active follow
up in Canada to A World Fit for Children.”
“We can use the torch held up by Senator Pearson to move forward.”
In this way, the necessary changes can really be examined, she said.
She concluded by saying, “Thank you, Senator Pearson, for your
love for our children.”
December 10
Panel Discussion : Policy issues through
the lens of community supports
Introduction: Janice Douglas, Canadian Association for Community
Living
Janice Douglas reminded participants that the morning presentations
would focus on policy issues through the lens of community supports.
Need for Supports: Sharon Hope Irwin
Sharon Hope Irwin said she had been involved with children with disabilities
while working in a daycare in Nova Scotia.
One of the families she has continued to work with is Sean’s.
The teenager shown on the screen sitting in a wheelchair on a golf course,
she said, “could be described in terms of what he can or cannot
do.” However, his gift for friendship would do more justice to
who he truly is. His parents say that he is a typical teenager-he is
in the top 10 per cent of math students in Nova Scotia, and he wants
a tattoo and a driver’s license. His third wish these days, she
added, is to become a junior member in his local golf club. “He
is competent at running his own life.”
“What were the supports that helped him get where he is?”
she asked. “If governments were more disability-sensitive, they
would make what his family did more common across Canada.” His
parents credit his success to his access to inclusive childcare and
summer camps until he was 12. In addition to allowing his parents to
keep their jobs, it gave him the social and cognitive skills that later
helped him to make the transition to school, and also meant that his
parents became activists early. Other success factors include the flexible
work options Sean’s parents enjoyed in the federal government,
responsive schools, tax rebates, support from co-workers and their church,
and fundraising. “They are a highly skilled, strategic, lucky
family.”
“I am a Throne Speech wonk,” she confessed, explaining
that she always studies these speeches carefully to see if anything
can be “tweaked” to support people with disabilities and
find opportunities for family-friendly policies that are sensitive to
people with disabilities-things like Québec’s family respite
leave. She gave the examples of employment insurance support and maternity
parental leave-a policy that had its problems. Although it did not take
into account the needs of parents with a child who had to spend the
first year of life in hospital, subsequent court cases led to an improvement
of the policy for families with a child with a severe health condition.
In conclusion, Irwin encouraged participants to keep trying to “shoe-horn
in” the disability angle, to keep thinking about opportunities
for disability-sensitive opportunities in policies.
Selective Trends: Programs and Services in the Context of
Educational Reform
Heather-jane Robertson
Although parents are rarely thinking in terms of policies when they
advocate for their children, the context in which families live is framed
by policy options, remarked Heather-jane Robertson.
Robertson read a letter sent to the editor of the Ottawa Citizen by
the parents of a child with autism. In this letter, the parents explained
how recent cuts to the special education budget led to three children
with special needs being on “rotating suspension” because
the only personal attendant left in the class could not deal with the
three children at once. “What would you do as a parent?”
she asked. She read a second letter, this one from parents pointing
out that the quality of education suffers when there are children with
special needs in a classroom with 30 students and only one teacher.
These people, she commented, would say that funding is the problem.
“I can’t disagree, but it masks other reforms, other decisions.”
Policies are comparable across the country, as well as in other countries,
“with varying degrees of enthusiasm and apologies.” Increasingly,
she said, education is catering to the world of commerce, embracing
the notions of competitiveness and performance. Predictably, this subtle
and dangerous trend is strengthening the prejudice against all the students
who are seen as a “drag on resources.” In Ontario alone,
39,000 children are waiting to be assessed in order to qualify for special
education services, and “as long as they are not counted, they
do not have to be served.” Even more worrying is the fact that,
when schools are treated like production lines, it is logical to weed
out substandard products, amongst which children with disabilities are
certain to be filed, she said.
It is a great credit to the hard work of the inclusion movement, that
so many teachers, parents, and students resist the simple solution of
re-segregating students with disabilities. “Inclusion is more
than a philosophy, it is a practice that cannot survive on good intentions
alone.” It cannot depend on the heroism of teachers, the persistence
of parents, or the determination of students.
Family-to-Family Support: Danny Soucy
Most people seek and find support from people with common interests
in activities, said Danny Soucy. “It is different for people with
children with disabilities.” Many of these families live in their
own little world and yet are keen to connect with other people with
similar experiences.
Soucy then described Family-to-Family Support using the letters of
the words:
F It must be fun. It must be a place where you
can discuss problems but also party.
A It must provide alliances with people who understand.
M It must be manageable and simple.
I It must be individualized, as every family is
different.
L Listening is essential.
Y “Why?” Soucy joked, “Because
we need to survive!”
T Teamwork is key-teaming up with other groups
and using their tools and strengths.
O Opportunities must be created through this network.
F Funding is needed to help with co-ordination
and with “getting other groups to understand our needs.”
It must be new funding, not money taken from other groups.
A It can help hold governments accountable, “if
our network goes coast to coast, if our voice is strong.”
M We need to connect with more people, to make
our other networks understand what we live.
I It must be inviting and comfortable.
L Laughter is essential, as it can help solve many
problems.
Y “Why? Because our society needs us to be
strong so that we can raise strong children, because we all need to
become people who accept people for who they are, not what they can
or cannot do.”
Most of all, it must be simple, he said, and not give families more
work or stress. He invited participants to visit their Web site at www.family-voice.com.
Community Inclusion: A Social Innovation Agenda? Michael
Bach
“Where should we be headed?” began Michael Bach. The answer,
he said, is “Towards a FPT policy.” A political and social
strategy is needed to move the political agenda forward for people with
disabilities.
Bach outlined a number of elements that are required for a “policy
architecture” that supports children with disabilities and their
families. The first one is a broad vision. It has already been negotiated,
to a certain extent, he said, referring to Unison, the National Children’s
Agenda, Knowledge Matters, and the Innovation Strategy. He drew participants’
attention to the danger associated with governments putting knowledge
on their agendas. “Focusing on certain forms of knowledge-having
certain actors dominate-can lead to children with disabilities being
left out.”
The second element listed by Bach was building blocks-learning, support,
income, and employment. Third, there has to be an investment in individuals,
families, and communities. He presented a grid, a “map,”
with building blocks and targets, and the areas where work is possible.
Bach-like Irwin-stressed the importance of working on Throne Speech
commitments. He encouraged participants to focus on the commitment to
specific measures for children with “severe” disabilities
in low-income families, and to provide compassionate leave for the gravely
ill and dying.
In order to get the government to honour its commitments, Bach said
it was essential to move all the elements on the map forward and to
develop a community-level strategy with six key areas:
Questions and discussion:
A participant asked Bach what opportunities he saw in the plan of
action launched the night before by Senator Pearson to implement the
co-ordination he talked about. “Senator Pearson created the
opportunity, we must create the vehicle,” he replied. “We
should figure out a way to grab hold of this vehicle and send a message
to the government on what our society wants.” He encouraged
participants to take advantage of this opportunity and invited them
to a meeting at the end of the roundtable to discuss this further.
Another participant commented on the fact that inclusion had been
accepted by provinces in the sense that, with the exception of Québec,
they have used it to cut back on special education. Robertson replied
that she uses the word “segregation” rather than “exclusion.”
When they promoted “mainstreaming” in 1985, she added,
it was understood it had to come with support.
In response to a comment on the need to develop a national education
policy in order to move forward, Bach admitted no “grand leaps”
had been made so far. He added that the best hope was to find education
ministers open to this idea and places to have a national dialogue
on education.
Reports Back from Small Group Discussions
Identifying Collective Policy Options
Facilitator: Cynthia Taylor
After taking them through a priority-setting exercise, Cynthia Taylor
asked participants to identify a key barrier to (or opportunity for)
actions that they could take. Each action would overcome a barrier (or
take advantage of an opportunity). Participants were also asked who
should do it, what exactly they would do, and the desired outcomes.
Suggested Priority Areas for Action and Outcomes
The representative for the first small group said they would promote
a culture of rights and inclusion. They would develop a communications
plan based on those rights and target individuals with less experience
and knowledge about children with disabilities. This would be an excellent
opportunity for co-operation and collaboration, he said. The NCA could
take the lead in this process with involvement from the grassroots communities.
They could use the Web to disseminate information about the issues faced—and
resources needed—by parents of children with disabilities.
A forum for action for children with disabilities is needed that would
allow people to come together to discuss this issue. One obstacle, however,
is the attitudes of provincial premiers. More active participation is
needed in Canada’s political processes to protect the interests
of children with disabilities and their families, and to communicate
it to the general population. The result of this action would be more
commitment from premiers and an opportunity to create links between
sectors to allow them to share their experiences and identify issues.
Political pressure could influence the creation of new policies and
the selection of priorities, she said, and ways could be found to realize
opportunities and capitalize on best practices.
Ongoing research and data collection are needed, and these data have
to be translated into action, said the next representative. This is
particularly crucial in rural, northern, and isolated communities. There
is an indifference towards these communities and their data needs are
not being met (for example, PALS did not include the North). Urban and
non-urban areas and governments at all levels could be involved in capacity
building and knowledge exchange. By adopting a multi-advocacy process,
advocates can be better assured that the issue will stay on the agenda.
Any research should lead directly to short- and long-term benefits for
isolated communities and towards policy development by federal, provincial,
and territorial governments. “We have to put the North back into
PALS, and any research should have direct, practical meaning for communities.”
There must be an integration of policies across silos that will ensure
easier access for parents of children with disabilities, said the next
speaker. The time is right to capitalize on a number of ongoing initiatives,
including the Romanow Report, The World Fit for Children, and
the Throne Speech. The NCA can lead and facilitate this process by mobilizing
people and writing letters to politicians.
Family networks must be funded along with the creation of a strategic
plan to foster leadership regarding the issues faced by families with
children with disabilities. A barrier to this is the fiscal and territorial
restraint within community-based service provider organizations. Senator
Pearson’s National Plan of Action can be used as a springboard
to mobilize families, build alliances, and nurture leadership, she said.
Groups can work with the Sub-Committee on the Status of Persons with
Disabilities to help foster political action regarding policy development.
The NCA can continue its contact with the Sub-Committee to raise issues
facing families with children with disabilities. It will also be important
to secure the necessary funding to influence the Sub-Committee around
best practices, for example. The Sub-Committee should receive full committee
status, which would recognize the importance of this issue and help
it secure the necessary funding to tackle an issue of this magnitude.
Better co-ordination is needed at the community level to achieve success.
Resources are needed to bring forth the actual costs and to prioritize
action, he said.
It is imperative to speak with one voice from the family perspective,
declared the next speaker. It will also be necessary to ensure that
the organization and infrastructure to achieve this is put in place.
Organizations such as the Family Network of Ontario can be used to strengthen
the collective voice. Ultimately, a pan-Canadian family network is needed
that puts the voices of families first.
Language—the way society speaks about issues—is of utmost
importance because it affects how people think about issues. Everyone
has to be targeted to ensure that he or she recognizes and uses language
that always respects the worth and dignity of persons with disabilities.
One way to move this forward would be to share the language policies
that many organizations (for example, Muscular Dystrophy Association)
have already developed. In order to effect change, “faces”
have to be put on different disabilities, she said.
To achieve the objectives of the National Plan of Action regarding
disability issues, a working group to focus on disability issues should
be formed and include representatives from a variety of existing organizations,
including the NCA and the Canadian Association for Community Living
(CACL). Youth should be included. The goal of this group would be to
focus on decision-making through a disability lens that would lead to
the development of action plans and policy. This information could be
distributed via the Web to NCA partners. In addition, a workbook to
disseminate knowledge at the community level should be developed.
A national education agenda needs to be developed and a champion found
to support this cause. The National Children’s Alliance could
facilitate this agenda in order to provide a national educational reality
for children with disabilities.
A shared vision needs to be built that respects the different skills,
strengths, and experiences that each individual brings to the discussion,
said the next speaker. A planning group could facilitate the development
of that shared vision.
There is a need to build awareness and create a sense of outrage about
the violation of the rights of children with disabilities among all
Canadians. This will lead to solidarity and action, she said. To overcome
the barrier of stigmatization faced by persons with disabilities, the
NCA could involve many different groups, including schools, media, governments,
and persons with disabilities to help affect attitudinal change. It
is important to ensure that people hear about positive personal stories.
Equally important is the need to build family-to-family links and move
from a medical model to a human rights model (for example, in medical
schools). This can be accomplished through a public awareness campaign
that has real stories at its base. The outcome of this action will be
a greater valuation of every person and recognition of his/her intrinsic
rights.
The next speaker emphasized the need to build a coalition and foster
network building. One barrier is the fact that Canada is such a large
country. This group will need to ensure that all its individual actions
are rights-based. Future networking must include grassroots organizations
so there is representation at every stage for families of children with
disabilities.
It will be important to support a national network for families, stated
the next representative. A forum is needed that will provide a voice
for families of children with disabilities, so they can identify and
share expertise on important issues. Information is needed at the local,
regional, and national levels. The instruments developed by the Roeher
Institute can be used to increase the voice of persons with disabilities
in the decision-making processes.
Much of what the next group discussed has already been brought forward
by the other groups, said the spokesperson. There must be support—both
financial and attitudinal—for family-to-family networking, along
with a commitment from all organizations to really listen to families.
Organizations must work from a value base that is not associated with
one champion who could leave the organization. Family networks must
be nourished and empowered so that they retain their autonomy and continue
to thrive even if funding dissolved.
The final group to speak also supported the creation of a forum that
will continue to network at a national level. One barrier faced by Canadians
is distance; however, the NCA can be the vehicle to generate discussion.
It is important to create a central system that ensures that the broadest
possible range of voices is heard. A Web site could be used to disseminate
this information and act as a central clearinghouse.
Questions and discussion:
A participant asked if there was a ray of hope that one could latch
onto. Bach said that he is involved in a task force that will develop
a series of regional and provincial summits to identify key educational
issues. The aim is to hold a national summit in a year and a half.
Members of this group should not allow their visceral sense of outrage
to pass, said another speaker.
The situation faced by two-parent families who have a child with
a disability as well as other children should not be forgotten, said
a participant. Inevitably, one parent takes on the responsibility
of the child with the disability almost to the exclusion of parenting
the other children. The CUPW surveys look at the affect on siblings,
said a panelist.
A participant asked what the NCA could do for parents who were new
to Canada and who were not necessarily aware of their rights. The
NCA is a group of approximately 50 national organizations, explained
another participant; it is not a body unto itself, but rather a collective.
“I am thrilled to hear people raise this issue,” said
another participant. New immigrants who are parents of children with
disabilities often do not know about the services and programs to
which they are entitled. In fact, they are often hesitant to access
these services for fear that their status may change as a result.
People¾both immigrant and non-immigrant populations¾are
often negative towards accepting children with disabilities into Canada.
Awareness about this issue needs to be raised in every group and community.
Closing Plenary
Summarizing the Discussion: Pauline Mantha,
Learning Disabilities Association of Canada
Pauline Mantha said that one of the NCA’s greatest strengths
is its ability to bring together a vast group of stakeholders to identify
and discuss issues related to children. Her task is to now analyze the
action areas that the small groups presented. She identified eight themes
from the morning’s session:
- Advocacy and awareness raising: Children with disabilities
should always be on the public policy agenda and that agenda should
be viewed through a “children with disabilities lens.”
The unique needs of this group must be recognized and a sense of outrage
among all Canadians must be created about this issue. Ultimately,
fostering integration across silos is needed. It must be easier for
everyone to access the services they need.
- Opportunities: There are many opportunities available
to promote the notion of citizenship and rights as they relate to
children with disabilities and their families.
- Partnering and community support: Partnerships-both
horizontal and vertical-are needed at many levels, including grassroots,
community, provincial/territorial, and federal. They can be used as
a vehicle to drive a solid policy action plan.
- Education: A national education agenda is needed
that includes strong support for an inclusive education policy and
system. There is also the need for more funding.
- Family network support: Family networks need support
because they play a critical role in supporting children with disabilities.
A mechanism to foster leadership within these networks must be developed.
- Research and data collection: Research and data
collection will help to drive policy action regarding rights, education,
and family networks.
- Funding and income support: A strong message must
be sent that issues such as paid leave and flexible work arrangements
are critical elements of family support.
- Accountability: Greater accountability at all levels
is needed. An accountability framework—and the associated measurement
tools—must reflect the unique needs of children with disabilities
and their families.
A Message from the Honourable Jane Stewart, Minister of Human
Resources Development Canada
Janice Douglas read a message from the Honourable Jane Stewart, who
was unable to attend the meeting. In it, Minister Stewart thanked the
group for the invitation to take part in their roundtable and said she
valued the work they were doing to improve the lives of children and
youth in Canada. By ensuring well-being in the early years, the foundation
is laid for well-being in later life, she said.
Minister Stewart also said she was encouraged by some recent events,
including the September 2002 Speech from the Throne, which vowed to
increase access to early learning as well as ensure appropriate and
quality childcare for low-income families. There was also a resource
commitment made to children with severe disabilities. Everyone can join
together to help make Canada stronger, she concluded.
Guest Speaker: The Honourable Ethel Blondin-Andrew, M.P.,
Secretary of State (Children and Youth)
Douglas introduced the Honourable Ethel Blondin-Andrew, noting that
she was the first Aboriginal person elected to the House of Commons.
Blondin-Andrew continues to be an advocate for Aboriginal peoples, children,
youth, and persons with disabilities.
Blondin-Andrew thanked the group for the invitation to speak and for
being so dedicated to some very challenging issues. She said that children
with disabilities are a priority for the Government of Canada as well
as for her personally. She had had the honour of announcing a $320 million
early childhood development fund that would, among other things, allocate
education funding for children with special needs. Excellent work has
been done in many areas (for example, Fetal Alcohol Syndrome); however
more awareness must be generated in order to continue moving forward.
She said she was encouraged to see groups from different backgrounds
coming together with a common purpose. She applauded the NCA for putting
together such an impressive roundtable.
For years, children sat in classrooms without help and families struggled
without the necessary support. This is changing today. The potential
of moving the agenda forward together is enormous.
She said she looked forward to reading the conference report and that
she had made note of the eight points that Pauline Mantha raised earlier.
This information would arm her in her future work, she said. The Government
of Canada is committed to working with its partners to ensure full inclusion
of children with disabilities and their families.
The September 2002 Speech from the Throne included a commitment to
remove barriers to work and education, including providing support for
families with severely disabled children. These families work all day,
every day, sometimes with no respite care. They face fatigue, frustration,
and conflict. Human beings need rest and replenishment.
The Government of Canada is committed to ensuring that all children
receive a good start in life, Blondin-Andrew said. There has been an
increase to the National Child Benefit for the last four successive
years. This has reduced poverty because the funding is going right to
the families.
Prevention and early interventions are integral parts of any assistance
the government provides, she said. An increase in access to early learning
opportunities and to quality childcare is essential. Part of the $320
million that the government pledged will go to this.
The government has also introduced measures to help low-income families
with children with severe disabilities. Blondin-Andrew said that one
out of every three children with disabilities lives in a family that
is below the low-income cut-off point. The government will work with
its partners to ensure that the families in need receive the support
they require. The Government of Canada will break new ground to advance
the issues related to children with disabilities. During recent government
cuts, two areas were not affected: children and Aboriginal peoples.
This continues to be a strong, civil society-oriented government, she
declared.
One challenge the government faces is the lack of reliable data to
help it understand exactly who these children are. PALS data are just
becoming available.
Blondin-Andrew welcomed the partnership represented by the NCA. “We
can accomplish significant work together,” she said. She congratulated
the group on its dedication, tenacity, and commitment to valuing each
child and his or her individual potential. She added that one should
not make the mistake of forgetting children living in remote, northern,
or isolated communities. “Success will come from the grassroots,”
she said.
Douglas thanked Blondin-Andrew for joining the roundtable. “We
have all come together to focus on political issues through the lens
of children with disabilities and their families.”
Adjournment: Dianne Bascombe, The Coalition
of National Voluntary Organizations and The National Children’s
Alliance
Dianne Bascombe thanked participants for challenging and inspiring
the NCA. “It is your stories that keep up going through our daily
work.” She told the group that the NCA is comprised of 51 national
organizations, which represent a cross-section of multi-disciplinary
groups. These organizations work with and are made up of children and
families.
The challenge is to advocate moving the political agenda forward. She
said the NCA has listened to what participants said when they talked
about the need to fill data gaps and the need to advocate for rural,
northern, and isolated communities. The NCA will work harder to use
a disability lens in its political work, she said. It will look at all
policies in terms of their implications for children with disabilities
and their families, and it will work toward identifying specific policy
options.
The National Plan of Action can be used to push policies forward and
to break down silos, she said. The United Nations Convention on
the Rights of the Child and the National Children’s Agenda
can also be used to frame all of the work the NCA does.
Bascombe said the NCA would also work more closely with the Sub-Committee
on the Status of Persons with Disabilities. She added that the idea
of having this Sub-Committee elevated to full committee status is an
interesting one.
The NCA will also look for more opportunities to link with grassroots
organizations and to work in unison to develop a pan-Canadian family
network. The building blocks exist, she said, but could be strengthened
by the inclusion of family voices.
A Web-based forum for national networking is a good idea, she said.
It is something the NCA could facilitate. The ideas raised around a
public awareness campaign were also very interesting. She said the NCA
would build on a rights-based approach to service delivery and policy
work, and improve the way it communicates as well as the language it
uses.
She added that the group has challenged the NCA to give a voice to
families, youth, children, and children with disabilities, and it will
continue to be mindful of that need.
