Helping children with Down’s Syndrome develop vital life-skills
£50 a month buys a specialist therapist for a term (11 weeks).
Along with all the medical complications, Down's syndrome makes it much harder for children like my son to do the basic things like walking and talking. In addition, he is also deaf. I was feeling pretty desperate about his future until we joined DSL...

9 months later and my son is now crawling and making his first attempts at speaking.

Mel Rosenvinge
  Friends of DSL
Further Reading...



Supporting evidence for specialised targeted early intervention and further reading

Below is a list of sources documenting the patchwork provision of statutory therapy services available to babies and children with Down's Syndrome, and evidence of need and best practice approaches to assist their development.


1. Lack of specialist intervention therapies and advice, NHS, therapy waiting lists

Bercow report on SLT provision in the UK 2008

"The current system for providing support to children and young people with SLCN is routinely described by families as a ‘postcode lottery’, particularly in the context of their access to speech and language therapy (SLT). Despite the hard work and commitment of many professionals in health and children’s services, the needs of many children and young people are still not being met."
http://dera.ioe.ac.uk/8405/1/7771-dcsf-bercow.pdf

UK Government: Every Child Matters

"Regular advice and input from a speech and language therapist is desirable from six months of age or earlier, but this level of service is not currently available in every part of the country. If you do receive help, it’s useful to ask what prior knowledge and experience the therapist working with you has of Down syndrome."
www.dcsf.gov.uk/everychildmatters/earlysupport


2. Evidence of need for therapies in the early years

Down's Syndrome Association (UK) (http://www.downs-syndrome.org.uk)

Information for Parents: Down Syndrome, funded by The Department for Education) (Page 9): "Helping children and young people to develop and achieve their potential" At the present time, there is no ‘treatment’ or ‘cure’ to reverse the effects of the extra genetic material that causes Down syndrome. However, research over the past 25 years has taught us a great deal about how the syndrome affects individuals and about how to promote development.

Children and young people achieve their potential with:
  • effective healthcare
  • good parenting skills
  • everyday family activities
  • early intervention in their first years of life to support development
  • good education at primary school, secondary school and in further education
  • sports, recreation and community activities
  • vocational training and work
http://www.downs-syndrome.org.uk/images/stories/DSA-resources/health/early_support_down_syndrome_final_2013.pdf


DforE's position on the principle of early intervention

"We accept that orientating services more towards early intervention is not easy, particularly during tough financial times, but there is evidence it can be done. Some suggest that under the current economic circumstances early intervention is a luxury that cannot be afforded. On the contrary, as this paper shows, when early intervention is embedded it can relieve the pressure on services so a given level of resource is used to better effect. Moreover, all the evidence is that no children’s services system can be efficient unless early intervention is a significant part of the mix."
(Source: Early intervention: Securing good outcomes for all children and young people, p.4)
(http://webarchive.nationalarchives.gov.uk/20130401151715/ https://www.education.gov.uk/publications/eOrderingDownload/DCSF-00349-2010.pdf)

Effectiveness of early intervention on children with Down's Syndrome National Down Syndrome Society (US) (http://www.ndss.org)

"The first years of life are a critical time in a child's development. All young children go through the most rapid and developmentally significant changes during this time. During these early years, they achieve the basic physical, cognitive, language, social and self-help skills that lay the foundation for future progress, and these abilities are attained according to predictable developmental patterns. Children with Down syndrome typically face delays in certain areas of development, so early intervention is highly recommended. It can begin anytime after birth, but the sooner it starts, the better."
http://www.ndss.org/Resources/Therapies-Development/Early-Intervention/

The Down Syndrome Research Foundation (UK) (http://www.dsrf-uk.org/)

"Physiotherapy, speech therapy and special educational programmes have an important role to play, while specific medical conditions associated with Down’s syndrome are treated appropriately."
http://www.dsrf-uk.org/index.php?option=com_content&view=article&id=148&Itemid=115

Effectiveness of early intervention speech and language therapy Down Syndrome Education International (http://www.down-syndrome.org)

See and Learn programme (http://www.seeandlearn.org/en-us/about/)

"The early years is a critical period for the development of key skills that provide the foundations for later learning. Children with Down syndrome learn more slowly and find it more difficult to learn than many other children and therefore need additional support. Targeted early intervention can help to improve rates of progress and outcomes."

"See and Learn offers an evidence-based developmental approach to early learning, drawing on the latest research on how children learn and develop and adapted for the particular characteristics of children with Down syndrome."

See also: Development in practice - Speech and language activities for preschool children with Down syndrome (http://www.down-syndrome.org/resources/2089/)

Reading interventions: http://www.down-syndrome.org/reviews/2128/
Speech production and clarity in Down's Syndrome: http://www.down-syndrome.org/reviews/2075/
Research: http://www.down-syndrome.org/research-practice/advance-online/
http://www.dsrf-uk.org/index.php?option=com_content&view=article&id=148&Itemid=115

Reasons for sensory integration therapy Down Syndrome Association (US) (https://www.dsancr.com)

Children with Down syndrome often also have Sensory Integrative Dysfunction…A Daily Sensory Diet can encourage the maturation of the Central Nervous System and build a more balanced neurological system. Basically, Sensory Integration can decrease sensitivities in the environment and replace undesirable behaviours with more appropriate behaviours, but can also aid in the regulation of emotions (anger, anxiety, excitement), motivation to do work, improve focus and lengthen attention span, improve generalization of skills, improve expressive and receptive language .
(https://www.dsancr.com/content.php?doc=62)

Bayley Scales of Infant Development:

See:
http://www.psychometrics.cam.ac.uk/services/psychometric-tests/bayley-scales
http://www.pediatricapta.org/events/ACP/2012/handouts/pedsfwdcampbell2/ BayleyIII-CK.pdf

Miscellaneous

Comparison of different therapy approaches in children with Down Syndrome:
http://hmg.oxfordjournals.org/content/18/R1/R75.short
From Down Syndrome—recent progress and future prospects

Medical advice, evidence, research into Down's Syndrome Lejeune Clinic:
http://www.lejeuneclinic.com/
http://www.lejeuneclinic.com/what-to-look-out-for
http://www.lejeuneclinic.com/speech-and-language
http://www.lejeuneclinic.com/physical-development

Down Syndrome Medical Interest Group:
(http://www.dsmig.org.uk/index.html)


3. The family, social perspective

DfE advocates early support and family centred approaches: "Strong and stable families are the foundation of a strong and stable society and are key to ensuring children develop into healthy, happy and successful adults."
(http://www.education.gov.uk/childrenandyoungpeople/families)
http://www.education.gov.uk/childrenandyoungpeople/families/a00203160/role-of-parents-in-childs-learning
http://www.education.gov.uk/childrenandyoungpeople/sen/earlysupport

A review of research into the role and impact of early intervention on the family

Families of children with Down syndrome: What we know and what we need to know:

"While early intervention is usually viewed as an intervention aimed at improving child developmental outcomes, there is general recognition that it is part of a developmental system[68] and as such often has important effects on other family members, particularly mothers. In a review of studies of early intervention (parent training models) with a child with autism McConachie and Diggle identified positive impact upon mothers as one of the outcomes[69]. Pelchat, Bisson, Ricard, Perreault and Bouchard found that parents of children with Down syndrome or cerebral palsy who were involved in early intervention had more positive perceptions of their child and of their parenting situation, had lower levels of distress and felt more supported[70].

The benefits accruing from involvement with early intervention are likely to reflect a number of processes including the mother's perceptions of progress for her child, the development of self-confidence in her skills for working with her child, and an increased sense of support as a result of sharing her concerns with professionals (see REF 71) and other parents.

In an explicit acknowledgement of the role of early intervention in supporting families, Bailey and colleagues identified five outcomes to aid in determining the effectiveness of early intervention, all of which were aimed at the family functioning rather than at child skill development:

"(a) families understand their child's strengths, abilities and special needs; (b) families know their rights and advocate effectively for their child; (c) families help their child develop and learn; (d) families have support systems; and (e) families are able to gain access to desired services and activities in their community"[72:p.227]"
http://www.down-syndrome.org/reviews/2079/


For more papers on DS see The Learning Exchange: Downs Syndrome (http://lx.iriss.org.uk/category/learning-exchange/learning-disabilities/downs-syndrome

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