Down Syndrome Research and Practice 10(1)

Provision of coordinated care for individuals with Down syndrome: The Calgary perspective

Donna Heerensperger

In Calgary, Alberta, Canada, cooperation between families, agencies and health care providers has resulted in services that improve the health and quality of life for individuals with Down syndrome. One of these is the multidisciplinary Down syndrome team at the Alberta Children's Hospital, which provides assessment, treatment and support based on established the Down Syndrome Medical Guidelines (Cohen, 1999) to children with Down syndrome. Originally established to provide services to children from birth to six years of age, the clinic now sees children until the age of 18 years. This change in clinic mandate has enriched and changed the practice of the team. They have an increased awareness of how issues develop over time and impact the child's functioning and quality of life and have developed approaches to prevent and minimise these challenges. This article describes the Down syndrome team's evolution and the benefits of a multidisciplinary/coordinated approach for individuals with Down syndrome.

Heerensperger, D. (2006) Provision of coordinated care for individuals with Down syndrome: The Calgary perspective. Down Syndrome Research and Practice, 10(1), 4-9.

Changes in maternal age in England and Wales - implications for Down syndrome

Elizabeth Crane, and Joan Morris

The risk of having a pregnancy with Down syndrome increases with maternal age. The percentage of all births in England and Wales to mothers aged 35 and over increased from 9% in 1989 to 19% in 2003. A 51% increase in the numbers of pregnancies with Down syndrome has been observed over the same time period (from 954 to 1440). Due to improvements in antenatal screening for Down syndrome and the subsequent termination of affected pregnancies, the total number of births with Down syndrome decreased from 770 in 1989 to 609 in 2003. However the number of births with Down syndrome to women aged 35 and over increased from 186 in 1989 to 310 in 2003 because of the increasing number of pregnancies amongst these women.

Crane, E, and Morris, J. (2006) Changes in maternal age in England and Wales - implications for Down syndrome. Down Syndrome Research and Practice, 10(1), 41-43.

Home and community literacy experiences of individuals with Down syndrome

Brian Trenholm, and Pat Mirenda

This exploratory survey was conducted to gain a detailed understanding of the home and community literacy experiences of children, adolescents and adults with Down syndrome. The data were collected from 224 parents/guardians across Canada who were asked to indicate literacy goals and priorities for their children with Down syndrome, the literacy resources they and their children utilised at home and in the community, perceived barriers to their children's literacy attainment, and solutions for alleviating the barriers. The results were analysed according to age when appropriate, in order to better understand the course of literacy development. Overall, the number of respondents who indicated their children with Down syndrome could read and write appeared to be consistent with previously published estimates, including the number reporting advanced reading levels. The wide range of reading and writing materials observed in use at home appeared to be greater than the range of materials actually used by children with Down syndrome. Relatively few of the parents who read storybooks to their children reported asking higher-level questions, suggesting that some parents might benefit from support in this activity. Many respondents reported using the library, and many expressed concerns about the quality and scarcity of literacy programs. The results are discussed with regard to their implications for how parents, caregivers, teachers, and program providers can encourage literacy development in persons with Down syndrome, and suggestions for future research.

Trenholm, B, and Mirenda, P. (2006) Home and community literacy experiences of individuals with Down syndrome. Down Syndrome Research and Practice, 10(1), 30-40.

Obsessive Compulsive Disorder treatment in patients with Down syndrome: A case series

Bruce Sutor, Mark Hansen, and John Black

In this case series we report four cases of patients with Down syndrome with symptoms consistent with obsessive compulsive disorder. Each patient experienced substantial reduction in compulsive behaviors with pharmacotherapy of an SSRI alone or with the addition of risperidone to SSRI therapy. None of the patients experienced significant side effects. This small case series supports the use of these medications in the treatment of co-morbid obsessive compulsive disorder in patients with Down syndrome.

Sutor, B, Hansen, M, and Black, J. (2006) Obsessive Compulsive Disorder treatment in patients with Down syndrome: A case series. Down Syndrome Research and Practice, 10(1), 1-3.

Temperament and behaviour problems in young children with Down syndrome at 12, 30, and 45 months

Deborah Fidler, David Most, Cathryn Booth-LaForce, and Jean Kelly

Though cross-sectional studies have yielded important information regarding the trajectory of psychopathology in middle childhood and adolescence in Down syndrome, there has been little exploration of maladaptive behaviour in the earliest years of development. In this study, we explore the emergence of maladaptive behaviour in young children with Down syndrome (n = 24) and a mental age-matched comparison group (n = 33) of young children with developmental disabilities of mixed etiologies. Behavioural data (Bayley Scales of Infant Development, Infant Temperament Questionnaire, Achenbach's Child Behaviour Checklist) were collected for children in each group at 12 months, 30 months, and 45 months. Findings from this study suggest that the onset of internalising behaviour difficulties in young children with Down syndrome may emerge later in early development than in children with developmental disabilities of mixed/nonspecific etiologies. In addition, temperament at Time 1 appeared to be a much stronger predictor of maladaptive behaviour outcomes at Time 3 in the mixed comparison group than in the Down syndrome group. Implications of this trajectory of the early development of maladaptive behaviour in Down syndrome for intervention for young children with Down syndrome are discussed.

Fidler, D, Most, D, Booth-LaForce, C, and Kelly, J. (2006) Temperament and behaviour problems in young children with Down syndrome at 12, 30, and 45 months. Down Syndrome Research and Practice, 10(1), 23-29.

Speech intelligibility and childhood verbal apraxia in children with Down syndrome

Libby Kumin

Many children with Down syndrome have difficulty with speech intelligibility. The present study used a parent survey to learn more about a specific factor that affects speech intelligibility, i.e. childhood verbal apraxia. One of the factors that affects speech intelligibility for children with Down syndrome is difficulty with voluntarily programming, combining, organising, and sequencing the movements necessary for speech. Historically, this difficulty, childhood verbal apraxia, has not been identified or treated in children with Down syndrome but recent research has documented that symptoms of childhood verbal apraxia can be found in children with Down syndrome. The survey examined whether and to what extent childhood verbal apraxia is currently being identified and treated in children with Down syndrome. The survey then asked parents to identify certain speech characteristics that occur always, frequently, sometimes or never in their child's everyday speech. There were 1620 surveys received. Survey results indicated that approximately 15% of the parents responding to the survey had been told that their child has childhood verbal apraxia. Examination of the everyday speech characteristics identified by the parents indicated that many more children are showing clinical symptoms of childhood verbal apraxia although they have not been given that diagnosis. The most common characteristics displayed by the subjects included decreased intelligibility with increased length of utterance, inconsistency of speech errors, difficulty sequencing oral movements and sounds, and a pattern of receptive language superior to expressive language. The survey also examined the impact of childhood verbal apraxia on speech intelligibility. Results indicated that children with Down syndrome who have clinical symptoms of childhood verbal apraxia have more difficulty with speech intelligibility, i.e. there was a significant correlation between childhood verbal apraxia and parental intelligibility ratings. Children with apraxia often do not begin to speak until after age 5. There was a significant correlation between speech intelligibility and age at which the child began to speak, i.e. children who began to speak after age 5 had lower parental intelligibility ratings. A diagnosis of difficulty with oral motor skills is more frequently given than a diagnosis of apraxia; 60.2% of parents had been given this diagnosis. According to survey results, it is rare (2%) for a diagnosis of childhood verbal apraxia to be made without a diagnosis of difficulty with oral motor skills.

Kumin, L. (2006) Speech intelligibility and childhood verbal apraxia in children with Down syndrome. Down Syndrome Research and Practice, 10(1), 10-22.

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