Project information

Hear what I say!

It is often difficult to understand what children with Down syndrome are saying, and this can be immensely frustrating for them. Communication difficulties make it more difficult to engage in everyday life and education. Our project promises to help children with Down syndrome speak more clearly.

2 years

Charity information: Down Syndrome Education International

Down Syndrome Education International logo
  • Need

    Need

    It is often difficult to understand what children with Down syndrome are saying. Although the children’s speech and language difficulties are well known, no therapy has clearly been shown to help. As a result, speech therapy practice varies and outcomes are often poor. Communication difficulties can hinder inclusion and acceptance. Being able to understand more than you can express is often frustrating and demoralising and leads others to underestimate your abilities.

    Solution

    We will evaluate an intervention that promises to improve speech clarity after only 16 weeks of therapy. If successful, the programme can be easily replicated through existing NHS, private and nonprofit speech therapy services in the UK and in many other countries. Pilot studies pilot studies indicate potential gains in the proportion of correctly pronounced consonants of between 20% and 50% after 16 weeks of intervention.

  • Aims

    Aim 1

    To evaluate a therapy designed to improve the speech clarity of children with Down syndrome


    Activities

    » Conduct a randomised waiting list controlled trial with 60 children with Down syndrome
    » Report the findings in a peer-reviewed scientific journal and in parent/advocacy organisation’s newsletters

    What success will look like

    The success of the trial will be demonstrated by completion and the publication of findings in a peer-reviewed scientific journal.

    Aim 2

    If the trial indicates the intervention is effective, encourage adoption of the therapy programme


    Activities

    » Document the therapy programme and publish a handbook
    » Develop and provide training courses for Speech and Language Therapists

    What success will look like

    The success of efforts to encourage adoption of the programme will be demonstrated by the volumes of handbooks sold and training courses attended.

  • Impact

    Impact

    More effective speech and language therapy resulting in improved speech skills for children with Down syndrome. To demonstrate success, we will monitor ongoing sales of the handbook, uptake of training courses and survey families to assess the use and benefits of the intervention.

    Risk

    The trial could show the therapy to be ineffective. Although this result would be disappointing it would still benefit therapy services by pointing therapists away from an ineffective intervention.

    Mitigating against this risk, four studies of speech interventions with children with Down syndrome published between 1989 and 2009 reported highly significant gains in percentage consonants correct with intervention periods of between 12 and 18 weeks.

    Reporting

    We will report progress to donors biannually via email bulletins.

  • Budget

    Budget - Project Cost: £385,000

    Loading graph....
      Amount Heading Description
      £280,000 Staffing costs Staff salaries and associated costs
      £25,000 Project expenses Assessment materials and travel
      £55,000 Administrative costs Administrative, IT, telecoms and management overheads
      £25,000 Property, finance, legal Finance, governance, legal, property and depreciation overheads
  • Background

    Location

    NHS Speech and Language Therapy services in London and Manchester, supported and evaluated by psychologists and speech and language scientists from Down Syndrome Education International and City University, London. If successful, the therapy will be adopted nationally and internationally.

    Beneficiaries

    Children with Down syndrome, aged 3 and over will benefit. While the therapy should be beneficial for children of all ages, greater gains are expected for those aged 3 to 5. There are 2,400 children with the Down syndrome aged 3 to 5 in the UK and 6,800 aged 6 to 15 years, with 830 born annually. Worldwide, there are an estimated 365,000 children with the Down syndrome aged 3 to 5 and 810,000 aged 6 to 15 years and approximately 225,000 babies annually.

  • Why Us?

    Why Us?

    Down Syndrome Education International is a world leader in scientific research and evidence-based information and training in support of more effective education for children with Down syndrome. According to New Philanthropy Capital, the charity “is now central to the worldwide understanding and sharing of research from many academics and the longer-term experience of those working with generations of children with Down syndrome.”

    Read more about the Charity running this project.

    People

    Professor Sue Buckley OBE

    Principal investigator. Sue is widely regarded as one of the leading researchers in the education and development of children with Down syndrome

    Professor Barbara Dodd

    Consultant. Barbara is an expert in the diagnosis and treatment of speech disorders in children.