Understanding the needs of disabled children with complex needs or life-limiting conditions

This report by the Council For Disabled Children and The True Colours Trust looks at what we can learn from national data on the numbers of children with complex needs or life-limiting conditions.

Together with the True Colours Trust, we commissioned this piece of research because we wanted a definitive picture of the type of data that is available; to understand what this data tells us about the population and whether it shows us anything useful in terms of developments and/or changes in the population; to identify gaps in current data collection; and to develop an action plan with key stakeholders to drive forward improvements.

It’s the first analysis of the numbers of disabled children with complex needs and life-limiting conditions in over a decade, and estimates that numbers have increased dramatically by over 50% since 2004, from 49,300 to 73,000 children and young people.

Read the full overview here

Read the full report here

Enablers and challenges to inclusion for disabled children, young people and their families

The report reflects the views of 10 young people, 123 parent carers of disabled children and adults and 128 professionals and volunteers who responded to the Disability Matters ‘call for evidence’ earlier this year | RCPCH

The report, ‘Disability Matters in Britain 2016: Enablers and challenges to inclusion for disabled children, young people and their families,’ pulls together the views and experiences of disabled children, young people and their parents or carers with the aim of raising awareness of good practice being adopted already, encouraging others to follow their lead and to help ensure that disabled people of all ages are valued as equals in our communities.

Read an overview of the report here

Read the full report here

Maternity Care Failing Some Disabled Women

Hall, J. et al. | Published online: 15 September 2016

Research published  by Bournemouth University and commissioned by Birthrights highlights how maternity care may not be meeting the needs of some pregnant disabled women.

A survey of women with physical or sensory impairment or long term health conditions highlighted how  – despite most women rating the support they received from maternity health carers positively – only 19% of women thought that reasonable adjustments or accommodations had been made for them. Some found birth rooms, postnatal wards and their maternity notes and scans “completely inaccessible”,  while a quarter of women reported that they felt they were treated less favourably because of their disability. Most strikingly, more than half (56%) felt that health care providers did not have appropriate attitudes to disability.


Image source: birthrights.org.uk

Just over half of the participants expressed dissatisfaction with one or more care providers, particularly their awareness of the impact of disability and their perception that their choices in pregnancy and birth were being reduced or overruled. One participant with a physical impairment and a long-term health condition stated, “No one understood my disability. No one knew how to help or who to send me to for support.” Another added, “I didn’t have any control or any choice. Everything was decided for me.” And one woman said, “They did not listen to me. I advised them on the unique way my body works. They did not listen to my advocates.”

Read the full report here

Read the full commentary here

Language and speech outcomes of children with hearing loss and additional disabilities

Cupples, L. et al. International Journal of Audiology. Published online: 14 September 2016

Objective: This study examined language and speech outcomes in young children with hearing loss and additional disabilities.

Design: Receptive and expressive language skills and speech output accuracy were evaluated using direct assessment and caregiver report. Results were analysed first for the entire participant cohort, and then to compare results for children with hearing aids (HAs) versus cochlear implants (CIs).

Study sample: A population-based cohort of 146 five-year-old children with hearing loss and additional disabilities took part.

Results: Across all participants, multiple regressions showed that better language outcomes were associated with milder hearing loss, use of oral communication, higher levels of cognitive ability and maternal education, and earlier device fitting. Speech output accuracy was associated with use of oral communication only. Average outcomes were similar for children with HAs versus CIs, but their associations with demographic variables differed. For HA users, results resembled those for the whole cohort. For CI users, only use of oral communication and higher cognitive ability levels were significantly associated with better language outcomes.

Conclusions: The results underscore the importance of early device fitting for children with additional disabilities. Strong conclusions cannot be drawn for CI users given the small number of participants with complete data.

Read the abstract here

A guide for health professionals on the support system for children and young people with special educational needs and disability (SEND)

sen comm1

Image source: DoH

This guide is for:

  • clinical commissioning groups
  • health professionals
  • local authorities

It explains the duties and responsibilities of health professionals who deal with children and young people with special educational needs and disability (SEND) and their families.

This guide should be read alongside the ‘Special education needs and disability code of practice: 0 to 25’.

sen comm.png

Image source: DoH

Read the full overview here

Read the full report here

Perceived barriers and facilitators to participation in physical activity for children with disability: a qualitative study

Nora Shields & Anneliese Synnot. BMC Pediatrics. Published: 19 January 2016

Obesity - A Positive Lifestyle

Background: Children with disability engage in less physical activity compared to their typically developing peers. Our aim was to explore the barriers and facilitators to participation in physical activity for this group.

Methods : Ten focus groups, involving 63 participants (23 children with disability, 20 parents of children with disability and 20 sport and recreation staff), were held to explore factors perceived as barriers and facilitators to participation in physical activity by children with disability. Data were analysed thematically by two researchers.

Results: Four themes were identified: (1) similarities and differences, (2) people make the difference, (3) one size does not fit all, and (4) communication and connections. Key facilitators identified were the need for inclusive pathways that encourage ongoing participation as children grow or as their skills develop, and for better partnerships between key stakeholders from the disability, sport, education and government sectors. Children with disabilities’ need for the early attainment of motor and social skills and the integral role of their families in supporting them were considered to influence their participation in physical activity. Children with disability were thought to face additional barriers to participation compared to children with typical development including a lack of instructor skills and unwillingness to be inclusive, negative societal attitudes towards disability, and a lack of local opportunities.

Conclusions: The perspectives gathered in this study are relevant to the many stakeholders involved in the design and implementation of effective interventions, strategies and policies to promote participation in physical activity for children with disability. We outline ten strategies for facilitating participation.

Read the full article here