Chapter 6: Young Children with Disabilities in Canada⁽¹¹⁶⁾

When examining the young Canadian population, the situation of very young children with disabilities poses one of the greatest challenges for researchers. While defining “disability” is difficult in any age group, it is particularly so when dealing with very young children. The full impact of many underlying conditions is often difficult, if not impossible, to detect in children in the early stages of development. The methods used to identify children with disabilities often differ from those used for adults. In 2001, substantial changes were made to the filter question used to identify disability on the Canadian census of the population. Even more important are the changes made to the new post-censal survey designed to examine disability issues. Replacing the Health and Activity Limitations Surveys (HALS) of 1986 and 1991, the Participation and Activity Limitations Survey (PALS) of 2001 employs a very different sampling plan than its predecessor. As well, PALS relies upon a different set of filter questions to detect the presence of a disability. For this reason, there can be no comparison between the results of the HALS (1986 and 1991) and the results of the PALS (2001)(117).

The 2001 PALS identifies children with disabilities based upon a set of filter questions regarding: difficulty “hearing, seeing, communicating, walking, climbing stairs, bending, learning or doing any similar activities” and the presence of a “physical condition or mental condition or health problem” which reduces the amount or the kind of activity the child can perform at home, school, or in any other pursuit such as transportation or leisure. It further relies upon information gathered concerning the presence of delayed development or a professional diagnosis of developmental disabilities or disorders, and the presence of a list of chronic health conditions.

Last year’s report, The Well-Being of Canada’s Young Children: Government of Canada Report 2002, provided a profile of young children with disabilities using the most current data at that time. This chapter builds on the profile provided last year, incorporating findings of the recently-released 2001 PALS data on very young children with disabilities.

Young Children Have a Low Rate of Disability

The rate of disability among young children in Canada is lower than it is among adults. This is partly because some disabilities in children have not yet been detected and also because the majority of disabilities are acquired after childhood. In 2001, the disability rate among children 4 years of age and under in Canada(118) was 1.6% (1.9% for boys and 1.3% for girls) under the new sampling procedure and screening criteria. This represents some 26,210 children (16,030 boys and 10,180 girls)(119). Among children 5 to 9 years of age, in 2001, there is a higher disability rate at 3.7% (4.6% for boys and 2.7% for girls). Among children 10 to 14 years of age, the rate is 4.2% (5.1% for boys and 3.3% for girls). While some children acquire disabilities with age (through illness or accident), it is also the case that some types of disabilities are simply not detectable until the child is older.

The Majority of Disabilities in Young Children are Mild to Moderate

The majority of disabilities in children 4 years of age and under range from “mild to moderate” in nature(120). According to the 2001 PALS, 57.5% of children with disabilities 4 years of age and under had a “mild to moderate” disability (representing 15,080 children); and 42.5% (representing 11,130 children) had a “severe to very severe” disability.

The 2001 PALS identified the most prevalent disability type among children 4 years of age and under as “developmental delay”. Developmental delay is described as a “delay” in the child’s development which is either a “physical, intellectual or another type”. In 2001, 68% of children with disabilities 4 years of age and under (17,820 children) had some type of “delay”. This was more likely to occur in boys (71.7%, or 11,500) than in girls (62.1%, or 6,320). Disabilities due to chronic illness were also very common among children aged 4 and under, with 62.6% (16,400 children) of young children with disabilities being affected. Among girls 4 years of age and under, 61.2% (6,230) had a disability due to chronic illness compared with 63.4 % (10,170) of their male counterparts(121).

Nearly One in Five Young Children With Disabilities Lives in a Lone- Parent Family

A fairly high proportion of children with disabilities live in lone-parent families: among children 5 years of age and under with disabilities, 19.7% lived in a lone-parent family in 2001.

Young Children With Disabilities Have an Impact on Parental Employment

The employment situation of parents of young children with disabilities is often affected by the presence of a child with a disability(122). The more severe the disability, the more likely the family is to experience some type of labour force impact. According to the 2001 PALS, for example, 54.1% of children under 5 years of age with a mild to moderate disability have at least one parent whose employment has been affected by the child’s disability; among children under 5 years of age with a severe to very severe disability, 72.3% experienced some type of impact on parental employment.

According to the 2001 PALS, the most typical employment impact reported by parents of young children with disabilities is either turning down a promotion or turning down a better job; 38.2% of children with disabilities under 5 years of age had a parent reporting this(123). Other types of employment impact reported among families of young children with disabilities include: working fewer hours (31.3%); not taking a job (31.2%); changing working hours (22.8%); and quitting paid employment (18.6%). Many children had parents reporting more than one type of employment impact as well.

Over a Quarter of Young Children With Disabilities Live in Low-Income Families

According to the 2001 PALS, 26.6% of children under 5 years of age with disabilities lived in families with incomes below the low-income cut-off (LICO) (using the pre-tax LICO); this compares with 20.1% of young children without disabilities(124).

This tendency to live in families with lower levels of household income, coupled with the potential for higher disability-related expenses, can often lead to financial problems within the child’s family. For example, according to the 2001 PALS, 23.1%(125) of children under 5 years of age with mild to moderate disabilities lived in families which reported experiencing financial problems as a result of the child’s disability; among young children with severe to very severe disabilities, 35.1% lived in families reporting such difficulties.

Balancing Work, Family and Child Care Is a Challenge for Parents of Children With Disabilities

Parents of children with disabilities may take on multiple roles of therapist, teacher, playmate and advocate, in addition to providing physical care(126). Survey research suggests that 93% of families with children with special needs(127) reported feeling moderate to high levels of tension as a result of balancing work, family and child care responsibilities(128).

One source of stress in this ‘balancing act’ is finding child care. According to the 2001 PALS, parents of one in five children with disabilities between birth and 4 years of age reported being refused child care due to their child’s disability or health problem(129).

In addition to caring for their child with a disability, parents often require assistance balancing other responsibilities. In the 2001 PALS, parents of children with disabilities were asked if they required help with housework, family responsibilities, or time for personal activities due to their child’s disability. Among parents of children with disabilities under 5 years of age, 52.6% indicate such a requirement(130). Most parents who require such assistance, however, either don’t receive any help at all (43.6%) or receive some help, but still require more (31.7%(131)); only about a quarter (24.6%) of parents requiring this type of help actually receive all the assistance they require(132).

Acknowledgement for the development of this chapter is extended to Gail Fawcett and Paul Roberts of the Canadian Council on Social Development.
Approximately 8,000 children with disabilities were sampled in the PALS 2001. Children under 5 years of age and those 5 to 14 years of age were asked many common questions, however, there are portions of the survey that do not apply to younger children. For more information regarding the differences between the HALS and the PALS, refer to: “A New Approach to Disability Data: Changes between the 1991 Health and Activity Limitation Survey (PALS)”, December 2002, catalogue no. 89-578-XIE, Statistics Canada, Housing, Family and Social Statistics Division.
Unlike the 1986 and 1991 HALS which provided data on all provinces and territories, the 2001 PALS was conducted only in the ten provinces; the 2001 PALS does not cover any of the three territories.
According to the 1986 HALS, the disability rate in this age group was 3.4%. According to the 1991 HALS, this figure had risen to 4.5%. Unlike the 1986 and 1991 HALS, however, no time comparison can be made with the 2001 PALS due to fundamental changes in the nature of the survey. The much lower rates being found in 2001 cannot be interpreted as a drop in the disability rate.
For children 4 years of age and under in the 2001 PALS, severity level is divided into only two groups: “mild to moderate” and “severe to very severe”. The severity scale is based upon both the number of types of activity limitations as well as the intensity of the limitations.
Among children 4 years of age and under in 2001, only five types of disabilities were identified. In order of prevalence among children with disabilities in this age groups, these disability types are: delay (68%); chronic illness (62.6%); hearing (12.1% – use with caution due to low sample size); unknown disability type (8.9% – use with caution due to low sample size); and seeing (8% – use with caution due to low sample size).
This was reported by 61.8% of all children with disabilities under 5 years of age.
Among parents of young children with severe to very severe disabilities, this figure was 48.9%; and among parents of young children with mild to moderate disabilities, it was 30.3%.
This excludes children living in the Territories and children for whom the concept of LICO is ‘not applicable’. These figures cannot be compared with those released in last year’s publication since they utilize different surveys with different screening criteria and different sampling techniques.
Use estimate with caution due to sample size.
Voices for Children Home Page, 2002, http://www.voicesforchildren.ca (September 6, 2002).
Special needs refers to “disabilities, delays or health disorders that significantly increase the difficulty of obtaining and keeping adequate child care and/or child care-related services.” (According to S. Irwin and D. Lero in their boX In Our Way: Child Care Barriers to Full Workforce Participation Experienced by Parents of Children with Special Needs – and Potential Remedies, Pp. vi.)
Canadian Institute of Child Health, The Health of Canada’s Children: A CICH Profile – Third edition (Ottawa: Canadian Institute of Child Health, 2000).
The severity level of the child’s disability did not seem to make much difference when it came to being refused child care.
Among those with severe to very severe disabilities, this figure was 70.1%; among those with mild to moderate disabilities, it was 39.5%.
Use estimate with caution due to sample size.
For more information on the derivation of some of these variables using the 2001 PALS and for some similar data for children aged 5 to 14 with disabilities, see also: Children with Disabilities and their Families – Tables, July 2003, Catalogue No. 89-586-XIE.