Tag: disabilities

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1.2 What is EI: concerns/special considerations for Aboriginal people

People of Aboriginal Descent

Early Intervention Programs in Aboriginal/First Nations Communities

As with all families with children with disabilities there are as many differences as there are similarities within Aboriginal families. Each family’s experience is unique to them and to their child.

However, there are common themes experienced by all families of children with disabilities. These themes cross cultural, social, economic and educational backgrounds. Families want the best for their children. A diagnosis of disability can represent uncertainty or possible threat to their child’s future. Also, many families struggle in learning more about the disability, what the disability means for their child, for their family and for their capacity as a family to adapt and to manage.

Beyond the challenges common to all families, Aboriginal families also face other stress factors which may impact their capacity to adapt to and manage disability related challenges. These include limited services in Aboriginal communities and limited access to services for urban Aboriginal families. Available services may not be culturally relevant or linked to services already used by the family. Small communities may have little or no experience with rarer conditions and may have few or no resources available to support the child and family when a diagnosis of disability is made.

In terms of early intervention services that follow culturally sensitive practices for families with Aboriginal or First Nations descent, the Aboriginal Infant Development Program and the more recently created Aboriginal Supported Child Development Program are designed to support Aboriginal families with children at risk, or with delay or disability. These programs work to help Aboriginal families  access and use available assessment and intervention services.  As family-centered services, these programs follow the family lead in determining the family strengths and needs and work to provide the family with a range of individualized services that promote healthy child and family development.

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1.2 What is EI: The Nature/Nurture Debate

Risk and Opportunity

In this course, when we refer to “risk,” we are talking about the wide variety of conditions and factors that work against healthy development in children. Early intervention specialists[1] talk about “established” and “suspected” risks. Examples of “established” or known and diagnosed conditions include biological factors, e.g., genetic conditions or illnesses.  Examples of “suspected” risk factors include environmental risk factors, e.g., toxic agents or poverty. These factors exist on a continuum. They are related to each other in a very complex way.

Risk is part of our daily lives. And yet, risks and opportunities go hand in hand. This can be seen in children with developmental delays, as well as for those who are at risk for disabilities.

It’s true that children with disabilities may have disadvantages compared with other children. But, the actions of parents and early childhood interventionists may help reduce the effects of the risk factors to which children were exposed. We see benefits in early diagnoses for children with moderate to severe conditions, and for those with subtle neurological differences.

[1] References:
Spiker, D., Hebbeler, K., & Mallik, S. (2005). Developing and implementing early intervention programs for children with established disabilities. In M.J. Guralnick (Ed.), A developmental systems approach to early intervention: National and international perspectives, (pp.305-351). Baltimore: Paul H. Brookes.

 

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1.2 What is EI: Family Adaptation

Overview of Family Adaptation

Just as different cultures experience disability in different ways, so do families. In some families there are a variety of stresses that come with having a child with a disability. In this section we present some of the family factors and dynamics that relate to this topic.

Most children with disabilities grow up within loving families. They share the joys and sorrows of family life with their parents, brothers, sisters.  While most children with disabilities live with their families, some children may be in foster homes or in hospital for a variety of reasons; e.g., some require specialized medical treatments; others live in places with little or no support for families.

How parents feel about having a child with disabilities may have an impact on how well they cope and adapt to everyday living with their child. This is because having a child with a disability is usually an unexpected event! How families adjust to disability vary. Sometimes it depends on the timing―when they found out about their child’s condition. It can also depend on whether or not a family has previous experiences with disability within their community. Both are important factors.

Families who have children with disabilities also have additional stressors in their life compared to other families. These include additional financial costs, and, at the same time, fewer opportunities for full-time work, resulting in lower family income. Approximately 29% of children with disabilities in North America live in households that are between the lower-middle and lowest income ranges (Hanvey, 2002)1.  Work can be stressful for parents because they often require time off due to  taking a child  to medical appointments or having to stay at home to take care of their more fragile child.

Recent research has indicated that often it’s not the child’s particular issue that causes stress (see full Glossary) for the family, but is instead dealing with systems to get services and support for the child that is incredibly stressful for families. At the same time, families are trying to provide the best for their child, including  a strong sense of community, a feeling of belonging, and having faith affiliation. In contrast, a higher proportion of risk factors make it more difficult for both these children and their families to cope.

1. see Reference
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1.2 What is EI: Effects of Culture and Family

Culture and Family

We know children with disabilities living in Canada come from a variety of cultural, ethnic and faith backgrounds.

But we do not know specific numbers on disability and race or cultural origin in Canada.

  • In this course, the term culture includes oral or written traditions (see full Glossary), the language, and the religious beliefs (see full Glossary) and practices (see full Glossary) in each family.
  • Cultural differences include values about independence or interdependence; how adults and children interact ; what the family expects in terms of their child’s development; and, the cultural values (see full Glossary) and beliefs about disability.

It’s important to be sensitive to cultural differences for families and children with disabilities.

Family culture

Some family cultures view disability as a reflection of their family status. They may place a high value on keeping their reputation intact within their community and they may not access services or information. Providing services that are culturally sensitive is one way to reach these families. Culturally sensitive practices include listening to –and finding out and learning about– family values, beliefs, their language and cultural traditions.

Other family cultures may value interdependence, and live within a large extended family network. This means that any decisions about the child’s care must be made with grandparents or other family members as well as the child’s parents.  There are many hands to help take care of the child.

Language:

In some cultures, the words for some disabilities or medical procedures may be very difficult to translate.

Canada is a culturally diverse country and there are more services  and more information available for families in variety of languages and cultures.

It’s important not to stereotype because a person’s  beliefs and response to having a child with a disability may be related to their culture.

The interplay between the systems that impact a family are varied. Urie Bronfenbrenner described child development happening within an ecological model (Fig. 1) that includes influences from the individual child characteristics; the family characteristics; the extended family, social systems and school systems, among others.

Ecological model

Fig. 1: This figure illustrates an ecological model that includes the values and beliefs that influence the child, family, community and larger society
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1.2 What is EI: Definition of Early Childhood Intervention (ECI)

Early Childhood Intervention (ECI)

Early childhood intervention is a broad term that describes a wide range of services that are offered to children who are at risk (see full Glossary) for developmental delays or who have a developmental disability, and for their families. When children have special needs, both parents and their children may benefit from early childhood intervention services. These services do not replace the parent. They offer support, information and guidance to help a child’s development. One goal of early childhood intervention is to help infants and young children reach their full potential. Another goal is to minimize the effects of a disability or condition on the infant and young child. Early childhood intervention contains educational, therapeutic, and preventive components.

Early childhood intervention (ECI) services are provided by a wide variety of well-trained professionals (see full Glossary) and who work following the parents’ leads, based on their needs–that is, using a family-centred approach (see full Glossary). The ways ECI services are delivered vary. They may be provided at home or at a centre. In contrast to family-centred programs, some early childhood programs provide direct therapy-based services for children. These are offered in a play situation, where the child and interventionist interact together through toys and other therapeutic materials.

Decades of research indicate that early childhood intervention will make a lifelong difference in the lives of many children. It’s crucial for children who may not be developing typically or who may be at risk for developmental delays. Early childhood intervention may help children who are at risk for developmental delays:

  • Learn more efficiently and/or effectively;
  • Remember what they have learned;
  • Apply what they have learned to new situations;
  • Perform better in school;
  • Stay in and graduate from school;
  • Form good friendships;
  • Be in successful and happy relationships;
  • Get and maintain a satisfying job.

Families of children who receive early childhood intervention services are usually better able to:

  • Live successful family lives;
  • Manage their lives;
  • Be active and welcome members of their communities;
  • Navigate the system in order to get the best services possible for their children ;
  • Have wishes and dreams for children and achieve these wishes and dreams.
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1.2 What is EI: Overview of Disability and its Impact on Canadian Culture

Overview of Disability and its Impact on Canadian Culture

Canadian children with disabilities are a diverse group coming from a variety of cultural and faith backgrounds. Some children live with their families in large urban centers and some live in very isolated and rural communities; some are from other countries and some are aboriginal; some live in two-parent families and some live in lone-parent families.

Historically,1   many children with disabilities have been invisible. Many of them were raised in large institutions, away from their families and communities.  At the beginning of the 19th century in Europe, a person with a disability was seen as punishment; in other cultural traditions, it was perceived that the parent or family had done something wrong.

Changes in these perspectives occurred after the 1920’s with the Industrial Revolution. During this time, a child with a disability was seen as a burden and caring for this child and keeping them at home would cause hardship on the family.  By the 1980’s professionals had persuaded many parents to institutionalize their child.

The movement to take children and people with disabilities out of institutions began in the 1980’s. The inclusive movement, where children and persons with disabilities are seen as active and contributing members of society, only started in Canada about 30 years ago. Still, some people born during the past three decades in Canada, and in other places, may have no experience with people with disabilities. This is especially true for families coming from countries who hold similar beliefs about disability to those held in Canadian society only 30 years ago.

Our Canadian society is moving towards inclusion.  According to Hanvey2 (2002) an inclusive society is one where “children are involved in activities and social structures in a way that is meaningful to their own unique experiences.” Inclusion means belonging to a community as equal participants.  This is why it should not be the responsibility of the child and family to fit any “program” or “activity.”  Real inclusion occurs when society takes on the challenge to provide a meaningful place for a child. Inclusive societies value diversity and recognize and value the common experiences and aspirations families have for themselves and their children.

Some would say we have come a long way, and others would say we have a long way to go.

1. see References
2. see References
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1.2 WHAT IS EARLY INTERVENTION AND WHY IS IT IMPORTANT?

Charter of The Rights of the Child, Inclusion Laws, and Early Childhood Laws

Parents and professionals involved with children with special needs will find it both important and useful to know about children’s rights and learn about the laws in place to protect each child.

As you read this page, you are invited to click on the links that explain information on laws, agencies and organizations.

The Rights of the Child vs. the Rights of the Parents?

While everyone has basic human rights, there can sometimes be conflicts between the rights of a child and the rights of his or her parents. Every child deserves services that meet his or her unique needs, but not all services offered agree with the values and beliefs held by parents and families. Other times, services may come too late for families.

It’s important to recognize that while people still experience discrimination in Canada, there are many laws that protect human rights, and that these laws apply to children as well as adults.

Canadian Charter of Rights and Freedoms

In 1982, Canada developed the Canadian Charter of Rights and Freedoms. This federal law states that all people in Canada, including children, have certain rights. One of these rights is that of equality, stated in Section 15 (1):

“Every individual is equal before and under the law and has the right to the equal protection of the law, without discrimination and in particular, without discrimination based on… mental and physical disability”

Human rights are also protected by the Canadian Bill of Rights and the Canadian Human Rights Act. In addition, each province also has human rights legislation .

United Nations Convention of the Rights of the Child

In 1991, Canada ratified the United Nations Convention of the Rights of the Child. This means that the Federal government agrees in principle with the international commitment to protecting children’s rights. This convention guarantees rights for all children, including social, economic, cultural, and civil and political rights.

Article 23 is specific to children with disabilities. It states that it’s important that children with disabilities are included and recognizes that special efforts are needed for children with disabilities to realize their rights.

Provincial Ministries

The bills and acts mentioned earlier contain laws set out for each province in Canada. Each province has its own service delivery systems, set out by provincial laws and guidelines.

In British Columbia, for example, services for children with special needs (see full Glossary) and their families are provided mainly by three Ministries:

  • the BC Ministry of Children and Family Development (MCFD);
  • the BC Ministry of Health; and,
  • the BC Ministry of Education.

The Ministry of Children and Family Development (MCFD) has a designated department called “Children and Youth with Special Needs” (CYSN). MCFD provides services to children in five regions in the Province: Northern, Interior, Fraser, Vancouver Island and Vancouver Coastals.

The MCFD and Community Living British Columbia (CLBC) work together to offer a range of services. These services are provided through various organizations, including MCFD and CLBC offices, health authorities, contracted agencies and other programs.

The BC Ministry of Health Services is managed provincially through the Provincial Health Services Authority (PSHA). Together they look after organizations that provide health services province-wide, including the BC Children’s Hospital or the BC Early Hearing Program.

As with MCFD’s regions, there are also five health authorities (HAs), each responsible for delivery of health care services and programs; for example, the At-Home program.

For school age children, services and programs are provided by the BC Ministry of Education. In 1995, a “Special Education Policy Framework” for British Columbia was established. This guided the development of legislation and direction for special education programs and services in British Columbia.

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