Chapter 9 - Young Children with Disabilities — An Overview101
Since the last report on the well-being of Canada's children, there have been a number of positive policy initiatives designed to provide greater support for young children with disabilities and their families. Nevertheless, there remains much that is not known about their well-being, as the last national data was collected in 2001. The 2006 participation and activity + imitation survey will likely generate new information and analysis. In the meantime, this chapter provides an overview of key issues specific to young children with disabilities and their families.
9.1 Prevalence
In Canada, the most recent disability incidence rates have been drawn from the Participation and Activity Limitations Survey (PALS) undertaken in 2001. Parents were asked to respond to a series of questions regarding difficulties their children might experience in a number of areas of activity — "hearing, seeing, communicating, walking, climbing stairs, bending, learning or doing any similar activities" — and the presence of a "physical cond ition or mental condition or health problem" that limits the child's level of activity at home, at school or in any other pursuit, such as transportation or leisure.102, 103
Based on this survey, the rate of disability among young children (from birth to 4 years of age)104 was estimated at 1.6% or 26,210 children (1.3% for girls and 1.9% for boys106).106 Of these children, 57.5% had mild to moderate disabilities and 42% had very severe disabilities.107 Nearly half (49.1%) had more than one type of disability. While PALS identified up to ten types of disability for older age groups, only five were identified in the birth to 4 age group: hearing (12%); seeing (8%); chronic health conditions, including asthma, allergies, complex medical care needs, cerebral palsy, autism, heart conditions and spina bifida (63%); developmental delay (68%); and disability of an unknown nature (8.9%).108
Why is this important?
Establishing a prevalence rate of disability among young children poses a number of methodological issues for researchers. Young children may well be underrepresented in disability statistics due to a number of factors. First of all, the definition of disability used in the survey may be more applicable to older children and adults with disabilities than infants and toddlers. Symptoms of a disability may not have emerged or been diagnosed at the time of the study due to the nature of the disability or screening and diagnostic practices. In addition, certain disabilities may be difficult to detect and assess in young children in terms of long-term significance and ultimate severity. Furthermore, given the variation in rates of child development in the early years, professionals and parents may in some cases be reluctant to label a young child as having a developmental problem. Some apparently delayed children may indeed catch up to their peers as they get older. On the other hand, while a developmental delay may appear to be relatively mild at a very young age, over time the gap between a child with a delay and more typically developing children may widen exponentially. For example, a child whose speech is considered 6 months behind at 2 years of age may be 2 years behind by the time he or she reaches the age of 6. And by then other cognitive difficulties may be more obvious.
9.2 The trends in the disability incidence rates
Assessing the rates of disability among young children in Canada remains a challenge. Comparing previous survey data (e.g., the 1991 Health and Activity Limitations Survey)109 with more recent PALS data is problematic given differences in survey methods. However, most medical practitioners believe that there is an increase in the number of identified children with disabilities due to better diagnoses and earlier detection, as well as in the actual number of children with disabilities due in part to advances in medical treatments and technologies that have improved the survival rate for premature infants as well as medically fragile children.110 As well, there is growing evidence that environmental factors (particularly chemicals) are contributing to an increase in certain disabling conditions among young children (see below). On the other hand, improvements in safety standards (e.g., car seats, playground equipment, reduction in lead use) may have contributed to a decrease in disabilities resulting from environmental injuries. Immunization and more effective treatments of a number of childhood diseases have also certainly reduced the incidence of related disabilities (for example, meningitis-related hearing loss).
Why is this important?
It is important to emphasize that official estimates of disabilities in the early years are likely below the actual incidence. Because of this, considerable caution should be used before this prevalence data is employed to anticipate service needs.111 Moreover, disability definitions used in surveys do not necessarily form the best basis for service eligibility and design, particularly in the early years.
Autism rates are a case in point. In recent years, there has been a public perception of a dramatic increase in incidence.112 However, it is not clear that an actual increase has taken place.113, 114 Accurate estimates of Autistic Spectrum Disorder are impeded by a number of factors. First, the autism diagnostic criteria has undergone "purposeful change" since it was first included in the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association in 1980.115 A broadening of the criteria for autism makes it problematic to compare incidence data collected from earlier studies with more recent data. Also, greater awareness among professionals and parents of children with the disorder may have contributed to an increase in the number of diagnosed116 cases but not necessarily to an increase in incidence. In any event, whether or not rates of autism or any other disability are increasing does not take away from the importance of early identification and intervention.
9.3 Early Identification
The importance of early identification of a disability in young children cannot be overemphasized. Some children with disabilities can be identified (and even treated) before they are born. Or the potential for a disabling condition may be discovered through screening of newborns, which then will be negated or confirmed with additional testing and diagnosis. Other children may be identified as the result of developmental screening in the early years or the emergence of symptoms. Still others will be identified following a contributory event (e.g., injury or illness).
Technology to conduct newborn screening tests did not become available until the 1960s. Prior to that, conditions were usually not detected until there were symptoms, such as developmental delays, and by then neurological damage had already occurred. Early detection can mean earlier treatment, which in turn may prevent problems from developing.117
Why is this important?
The importance of newborn screening and genetic testing is widely recognized in developed countries and increasingly in developing ones. Newborn tests can now screen for a range of disorders, both genetic and non-genetic, including congenital hearing loss, cystic fibrosis, sickle cell anemia and metabolic disorders (e.g., Phenylketonuria).118 The Save Babies Through Screening Foundation of Canada has recommended that 29 tests119 be conducted.
Just as important as newborn screening tests are assessments of the child's development conducted at regular intervals during the first 5 years of a child's life. Like newborn screening, such assessments can be critical to the early detection of emerging problems (e.g., developmental delay) and to paving the way to effective interventions that could potentially prevent or mitigate more serious and protracted problems later on.120
9.4 Causes of disabilities
Causes of disabilities vary widely. Some children become disabled as the result of genetic predisposition, while others become disabled as the result of environmental factors. Some children may become disabled as the result of an accumulation or interplay of factors, for example, a genetic susceptibility combined with environmental exposures during vulnerable periods of development.121
Why is this important?
Young children are vulnerable to disabilities resulting from unintentional injuries (e.g., brain injury) sustained in car crashes, falls and near-drownings.122 They are also vulnerable to disabilities resulting from intentional injury (e.g., shaken baby syndrome, other forms of child abuse and neglect123). There has been increasing concern in recent years about the proliferation of environmental chemicals and their impact on young children who are "uniquely vulnerable to chemical toxicants because of their disproportionately heavy exposures and their inherent biological growth and development."124 Children's exposures to environmental toxins (both pre and post-natal) "are understood to contribute to the causation and exacerbation of certain chronic, disabling diseases in children including asthma, cancer, birth defects, and neurobehavioral dysfunction."125 Children may also be damaged in utero due to maternal consumption of drugs and/or alcohol (resulting in Fetal Alcohol Syndrome Disorder or Fetal Alcohol Effects),126 exposure to tobacco smoke, or the physical abuse of their mothers. Young children living on farms can be negatively affected by pesticide use127 or disabled due to farm related injuries.
For many children, the cause of their disability is unknown. Where children with developmental disabilities are concerned, a specific cause is established in less than 30% of identified cases.128
9.5 Interventions
Once a child has been identified with a specific disability or possibility of a disabling condition, intervention becomes of utmost importance. With most disorders, the earlier intervention or treatment can be initiated, the greater the chance of having the best possible outcome for the child. Interventions can range from early home visiting programs, through specialized preschools or inclusive child care centres with appropriate support and expertise, to rehabilitative services and complex medical treatments.
Why is this important?
One of the issues identified by experts in the field is the pressure being exerted on current services by increased levels of identification.129 Accessing appropriate treatment and support once a diagnosis is made can be a problem, particularly in cases involving children with developmental disabilities. Evidence from professionals and parents suggests there is a different level of service for children with physical disabilities than for those with developmental disabilities, with the latter more likely to face protracted delays in obtaining assessments and rehabilitative services. This problem may be exacerbated depending on the severity and type of disability, and the geographic location (e.g., rural).
9.6 Impact on the Family
When parents discover that a child is not developing typically or that he or she has an identifiable disability, the response is often shock, disbelief and grief. The early years of the child's life may be very anxious and stressful for the parents as they deal with multiple tests and assessments as well as new terminology and services, and ongoing appointments with specialists and service workers. Families with children with developmental and/or severe disabilities may face particular challenges in accessing appropriate services. Some families may even relocate (e.g., from a rural to urban setting) to find services for their children.
As well, parents must struggle with new roles as they become their child's case manager, advocate and often, therapeutic interventionist. Siblings are also likely to be affected as the parents focus their attention on the needs of the child with a disability.
Stress for many families with children with disabilities remains high,130 and respite and other home services are often critical to their well-being. Among young children (from birth to 4 years of age) with disabilities, about 40% have parents who report needing help with housework and family responsibilities and time off for personal activities because of their child's condition, but are not getting the help they need.131
Why is this important?
Once they are able to come to terms with the change in their circumstances, most parents are able to adjust remarkably well to their new situation and enjoy their children. Many report that having a child with a disability has enriched their lives.
However, the majority of families of children with disabilities report that their child's disability has affected the family's employment situation, with mothers the most likely to be affected. This is particularly true of families with young children with disabilities, 62% of whom report that their employment situation has been affected, which could include turning down a promotion or better job, working fewer hours, changing hours of work, not taking a job or quitting.132
In addition to a possible impact on employment, the family income can also be affected. For example, the average household income for families with children with disabilities in the birth to 4 age group in 2001 was $54,660, whereas the average household income of families with children from birth to 4 years of age without disabilities was $66,138. This difference is most pronounced in the early years of caring for a child with a disability, continuing to a lesser extent as the child with a disability gets older.133 According to PALS, families of children with disabilities are more likely than families without children with disabilities to have an income of $29,000 or less, and less likely to have an income of $50,000 or more.134 Single parents caring for children with disabilities are at particular risk of lowered income and job loss.1352
Families may also have to deal with disability related expenses that put a strain on household finances. A number of disability related tax measures are in place (such as the Child Disability Benefit) to assist families in dealing with the pressures. Families may also be eligible for provincial funding to offset extraordinary disability related expenses.
Workplaces that are understanding of the needs and changed circumstances of parents with children with disabilities can make an enormous difference to the economic and social well-being of families.136 Examples of sensitive policies include flexible work arrangements (e.g., flex hours, job sharing, compressed work week, working from home), predictability of scheduling, special leave, employee assistance, and benefit packages that take into account the needs of children with disabilities.137
9.7 Child Care
Accessing inclusive and appropriate child care can pose a substantial challenge to families caring for children with disabilities.138 According to PALS, approximately 20% of parents of preschool children report having been refused child care or babysitting services due to their child's disability. This percentage does not appear to vary significantly based on the degree of disability.139
And even when parents do manage to access child care, they may face a significant challenge once their young children approach school age in ensuring continuity of support during the transition from child care to school. (Child care located within a school can greatly assist with this transition as well as provide after school care.)
Nonetheless, inclusive child care in Canada continues to evolve and many child care centres have demonstrated a high degree of commitment to the inclusion of children with special needs.140
Policies conducive to the inclusion of children with special needs in child care vary across the country. Such policies may include funding of auxiliary supports (e.g., itinerant services) or reduced ratios (i.e., additional staff); staff qualifications, specialized training and support; specialized equipment; and requirements for Individual Support Plans and parental participation.141 In terms of the number of children with special needs in child care programs as a percentage of the total number of children included, 10% is suggested by available research and practice as a guideline in preschool (age 3 to 5) and 5% in infant/toddler programs.142
Why is this important?
Inclusive child care is important to families caring for children with disabilities for several reasons. First, it is beneficial for a child with a disability143 to have the opportunity to be in a setting with his or her peers (with and without disabilities): children with disabilities are often isolated and without community, and child care can help to overcome that. Inclusive child care is also important in terms of its potentially positive impact on the child's individual growth and development in key areas. And it allows both parents to continue to work, which can be crucial to meeting disability related expenses and to the family's economic and psychological well-being, both in the short term and the long term.144
101 Acknowledgement for the development of this chapter is extended to Catherine Stewart of Catherine Stewart & Associates.
102 Government of Canada (2003) The Well-being of Canada's Young Children: Government of Canada Report 2003. Ottawa: Government of Canada.
103 This criterion in itself is likely to have resulted in a low estimate, as parents of very young children may not yet see the difficulty as limiting their activities.
104 Although this report encompasses children from birth to 5, the statistics cited in this chapter are based on PALS, where the age category is birth to 4.
105 It is worth noting that while boys with disabilities outnumber girls, this proportionality reverses itself in adulthood, when women with disabilities outnumber men. It has been suggested that the under-representation of girls in special education may reflect diagnostic practices that focus on behavioural symptoms more likely to be evident in boys. See American Association of University Women, "Women and Girls with Disabilities,"http://www.aauw.org/issue_advocacy/actionpages/positionpapers/disabilities.cfm.
106 Please note: PALS did not include people in institutions, First Nations reserves, the Yukon, Northwest Territories and Nunavut.
107 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." Theseverity scale is based on both the number of types of activity limitations as well as the intensity of the limitations.
108 Office for Disability Issues (2001). A Profile of Disability in Canada. Ottawa: Human Resources Development Canada. Available at: http://www.sdc.gc.ca/en/hip/odi/documents/PALS/PALS.pdf.
109 The 1991 HALS report estimated that 5% of male and 4% of female children (from birth to 4 years of age) have special needs.
110 Communication with Dr. Wendy Roberts, Bloorview MacMillan Hospital, September, 2005.
111 Communication with Dr. S. Hope Irwin, SpeciaLink, September 19, 2005.
112 Barclay, L. (2005). "Autism ‘Epidemic?' A NewsmakerInterview with M.A. Gernsbacher, PhD, and C. J. Newschaffer, PhD." Medscape Medical News. Available at: http://www.medscape.com/viewarticle/508429?src=mp. Although there is limited data in Canada, this is a common belief here as well. In California, the statewide Department of Developmental Services reported that from 1987 to 1998 the number of individuals served under the category of "autism" had increased by 273%. A 2002 report to Congress on the federal Individuals with Disabilities Education Act (IDEA) claimed that the number of students (ages 6 to 21) with autism in America's schools rose 1,354% over eight years. See Gernsbacher, Morton Ann, Michele Dawson and H. Hill Goldsmith (2005). "Three Reasons Not to Believe in an Autism Epidemic." Current Directions in Psychological Science. Vol. 14. No. 2. 55—58.
113 Gernsbacher, M. A., M. Dawson and H. Hill Goldsmith (2005). "Three Reasons Not to Believe in an Autism Epidemic." Current Directions in Psychological Science. Vol. 14. No. 2. 55—58.
114 Newschaffer, C. J., M. D. Falbe and J. G. Gurney (2005). "National Autism Prevalence Trends from United States Special Education Data." Pediatrics. Vol. 115. No. 3. 783—784.
115 Ibid.
116 Diagnosis is further complicated by the fact that there are no biological markers for autism. Diagnosis is behaviourally based, and therefore is relatively subjective.
117 Mayo Clinic (2002) Newborn screening (monograph). Rochester, MN: Mayo Foundation for Medical Education and Research, cited in Kenner, C. and M. Moran (2005). "Newborn Screening and Genetic Testing." Journal of Midwifery and Women's Health.Vol. 50. No. 3. 219—226.
118 Kenner, C. and M. Moran (2005). "Newborn Screening and Genetic Testing." Journal of Midwifery and Women's Health.Vol. 50. No. 3. 219—226.
119 The US government is preparing to recommend screening for 29 treatable conditions and disorders. See Eggertson, L. (2005). "Pediatric Screening: Canada Lags on Newborn Screening." Canadian Medical Association Journal. Vol. 173. No. 1. 23—26.
120 Communication with Dr. Wendy Roberts, Bloorview MacMillan Hospital, September, 2005.
121 Suk, W. A., K. Murray and M. D. Asvakian (2003). "Environmental Hazards to Children's Health in the Modern World." Mutation Research/Reviews in Mutation Research. Vol. 544. No. 2—3. 235—242. See page 235.
122 Volpe, R., J. Lewko and A. Batra (2002). A Compendium of Effective, Evidence-Based Best Practices in Prevention of Neurotrauma. Toronto: University of Toronto Press.
123 Once children have disabilities they are even more vulnerable to abuse and neglect. See Sullivan, P.M. and J. F. Knutson (2000). "Maltreatment and disabilities: A population-based epidemiological study." Child Abuse & Neglect. 24(10): 1257—1273.
124 Suk, W. A., K. Murray and M. D. Asvakian (2003). "Environmental Hazards to Children's Health in the Modern World." Mutation Research/Reviews in Mutation Research. Vol. 544. No. 2—3. 235—242. See page 235.
125 Landrigan, P. J. and A. Garg (2002). "Chronic Effects of Toxic Environmental Exposures on Children's Health." Clinical Toxicology. Vol 40. No. 4. 449—456.
126 Disability rates among children are likely to be disproportionately high in communities where alcohol abuse is widespread and intergenerational. In such communities, FASD or FAE may affect as many as one of five children. See Heath Canada (2005). It Takes a Community: A Resource Manual for Community-based Prevention of Fetal Alcohol Syndrome and Fetal Alcohol Effects. Ottawa: Health Canada. Available at: http://www.hc-sc.gc.ca/fnih-spni/pubs/preg-gros/takes-prend-commun/res chap05 e.html.
127 Government of Canada (2002). The Well-being of Canada's Young Children: Government of Canada Report 2002. Ottawa: Government of Canada.
128 Communication with Dr. Wendy Roberts, Bloorview MacMillan Hospital, September, 2005.
129 As suggested earlier, this situation may be exacerbated if planners depend on census data where young children with disabilities are underrepresented.
130 Irwin, S. H. and D. S. Lero (1997). In Our Way: Child Care Barriers to Full Workforce Participation Experienced by Parents of Children with Special Needs — and Potential Remedies . Cape Breton: Breton Books.
131 Office for Disability Issues (2001). A Profile of Disability in Canada. Ottawa: Human Resources Development Canada. Available at: http://www.sdc.gc.ca/en/hip/odi/documents/PALS/PALS.pdf.
132 Ibid.
133 Ibid.
134 Ibid.
135 The Roeher Institute (2000). Finding a Way In: Parents on Social Assistance Caring for Children with Disabilities. Toronto: The Roeher Institute.
136 Irwin, S. H. and D. S. Lero (1997). In our way: Child Care Barriers to Full Workforce Participation Experienced by Parents of Children with Special Needs — and Potential Remedies . Cape Breton: Breton Books.
137 The Roeher Institute (1998). Employees Who are Parents of Children with Disabilities: A Guide for Employers. Toronto: The Roeher Institute.
138 Ibid.
139 Office for Disability Issues (2001). A Profile of Disability in Canada. Ottawa: Human Resources Development Canada. Available at: http://www.sdc.gc.ca/en/hip/odi/documents/PALS/PALS.pdf.
140 Irwin, S. H., D. S. Lero and K. Brophy (2004). Inclusion: the Next Generation in Child Care in Canada. Cape Breton: Breton Books.
141 The Roeher Institute (2004). Inclusivity of the Child Care Policy Environment in Canada: Much work to be done. Toronto: The Roeher Institute.
142 Zigler, E. and S. J. Styfco (2000). "Pioneering Steps (and Fumbles) in Developing a Federal Preschool Intervention." Topics in Early Childhood Special Education. Vol. 20. No. 2.: 67—70.
143 Not only is it beneficial to the child with the disability, but there is much to suggest that it is also beneficial to children without disabilities.
144 Irwin, S. H., D. S. Lero and K. Brophy (2000). A Matter of Urgency: Including Children with Special Needs in Child Care in Canada. Cape Breton: Breton Books.