Service provisions and family uptake

Service use patterns by children and youth with Down syndrome in a Canadian region served by a specialty medical service

John D. McLennan, MD, PhD 1,2; Casey Fulford, PhD 3; Sophia Hrycko, PhD, MD 2,3; Virginie Cobigo, PhD 2,3; & Munazza Tahir, MA 2,3

  1. University of Calgary, CANADA
  2. Children's Hospital of Eastern Ontario-Research Institute, CANADA
  3. University of Ottawa, CANADA



Background: Children with Down syndrome require an array of services from different sectors over time to optimize health and development, however, there is little information on longitudinal, cross-sector service use. This study describes such patterns for a cohort of children with Down syndrome.

Methods: Parents of children with Down syndrome (n=20) were recruited from a specialty Down syndrome clinic based at a Canadian children's hospital. They were interviewed by phone using a semi-structured interview covering service use across multiple sectors. Service use maps were constructed from the elicited information. Service patterns were then identified through cross-map comparisons, supplemented by contextual information extracted from the parent interview texts, and illustrated with a case example.

Results: Five key service patterns were identified:

  1. A circumscribed role of primary care physicians related to the availability of a specialty Down syndrome clinic
  2. A marked shift in the delivery of public habilitative services from development agencies in the preschool years to exclusive school delivery after school entry
  3. Families obtaining private services, especially speech and language services, to complement perceived gaps and uncovered components within public services
  4. A prominent role for parents in the advocacy and pursuit of additional services, especially non-physician services
  5. Service variability as a function of timing and severity of medical comorbidity

Conclusion: Next steps should include examining the acceptability and cost-effectiveness of these service patterns and determining whether service system changes are addressing some of the problematic areas, while preserving the flexible and functional aspects of the service system.

Parental survey: availability, type and frequency of early intervention support for children with Down syndrome aged 0-5, living in the UK

Dr Deborah Thompson



In 2019 a group of parents worked with the Down's Syndrome Association (DSA) to set up an online parental questionnaire to record variation in availability, type and frequency of early intervention support for children with Down Syndrome aged 0-5 living in the UK. The questionnaire was available through survey monkey for 2 months and was widely promoted through social media channels and through the DSA.

Survey participants

234 people responded with children aged between 0-5 months and 5 years, predominantly from England (193).

Main findings

The majority of parents reported that as a new parent and navigating the support available, the local Down syndrome support groups (60%) and Facebook (50%) were common sources of advice/guidance. It is a concern that less than half of parents felt they had received support through their health visitor or their pediatrician. The majority of children attend mainstream early years settings and parents felt that the setting was working with them to set goals (70%) and work towards them (80%) - but less than 50% felt that they consider their priorities as a carer when setting goals.

The results for England show that access to Portage or early development increases with age, however it is worrying that a third of children with Down syndrome aged 2-3 had never had Portage. Of those 103 children receiving Portage there was a wide range in frequency. 61% of parents had accessed speech and language support for feeding and 59% for communication. The majority of children aged 2 and up were receiving speech and language therapy for communication, however support for children under 2 was not the norm.

The implications of these findings and parental views on them will be discussed.

Providing services to people with Down syndrome in the light of ethical principles

Tatyina Nechaeva 1; & Alexander Borovykh 2

  1. Director of the Family Center, Downside Up
  2. Director of Strategies, Downside Up




The main aim of the presentation is to discuss the need to further develop the set of key services based on ethical norms in order to enhance the quality of life of the people with Down syndrome and their families

Director of the Downside Up Family Center will present key elements of the long term multidisciplinary family support program aimed at developing competencies of people with Down syndrome at various stages of their life. The presentation will demonstrate program approaches which Downside Up implements in its practice to observe ethical principles and meet the needs of people with Down syndrome and their families. Also, in her presentation she will focus on other tools (protocols and policies) that Downside Up promotes to ensure the quality of services to people with Down syndrome in Russia. The application of the ethical norms is key for positive environment in the society to foster tolerance and acceptance of people with Down syndrome. The presentation will also include main results of recent Downside Up survey on ethics. The survey was implemented in April 2020 among families raising children with Down syndrome and professionals working with people with Down syndrome. Also, the presentation will show examples how research results were translated into practice improving Downside Up programs.

Empowering parents to implement early intervention toilet training for children with Down syndrome

June Rogers MBE 1; & Nicola Enoch 2

  1. Retired Children's Specialist Nurse
  2. Founder of PADS




Lack of research regarding toilet training children with Down syndrome has resulted in confusion and misconceptions around how and when toilet training should be started. Parents also reported that they receive little or no advice and any given is either not helpful or completely wrong. However, personal experience had showed us that with the right advice and support, children with Down syndrome can be toilet trained at the same age as their typically developing peers.

So, the questions we wanted to answer were:

In 2019 a closed Facebook (FB) group was set up as a platform for information giving, advice and mutual support. A range of resources were also developed, including information sheets and videos, and made available for families to view and download. Membership of the group grew rapidly with currently over 2.3K members. Several other related closed FB groups have now been developed including smaller groups to help parents trouble shoot - the aim being to enable all children to be toilet trained before they start school.

The group has been hugely successful in terms of not only empowering parents to toilet their child with Down syndrome but also raise awareness of common problems such as constipation, ensuring timely and appropriate treatment. Regular survey polls are conducted to evaluate the impact of the group and the effectiveness of advice and support given. The project was shortlisted for 5 Awards in 2020 and an article published 1.

Providing advice and support via social media has shown to empower parents to toilet train their child, with Down syndrome, age appropriately.

  1. Rogers J, Enoch N (2020) Early Intervention toilet training for children with Down syndrome. British Journal of Nursing; 29:22, 1325-1326