Links
We have put together a selection of useful links which may prove helpful to members. If you have come across a link you may feel is worthwhile sharing, please email our co-ordinator at co-ord@cdssg.org.uk
- Down’s Syndrome Education International – works to improve early intervention and education for children with Down syndrome
- Mencap – supporting people with learning disabilities
- Contact a Family – support families of disabled children across the UK, whatever their condition or disability
- Family Fund – if you’re raising a disabled or seriously ill child, you might be eligible for a grant from Family Fund
- Special Needs Toys – Special Needs Toys, Sensory Toys, Multi Sensory Equipment and Sensory Rooms
- Face to Face, part of Scope – connecting parents with disabled children for emotional and practical support
- Counselling Directory – connecting you with professional support
- NARA – The Breathing Charity– NARA is a registered working title of The National Association for the Relief of Apnoea. Many of our members have problems with their breathing and this organisation can hopefully assist many who suffer or know those who suffer from various respiratory conditions.
- www.upsanddowns.net – Down’s syndrome support group for the South West. They often run workshops for schools and can come in as an Education Consultant for Cornwall and Devon Schools.
- www.specs4us.com – glasses specifically designed for children with Down’s Syndrome. They are based in the US but Specsavers in Bodmin and Camborne are now suppliers for Cornwall.
- Downs Side Up – an inspiring award winning blog from one of our members Hayley Goleniowska, gently changing perceptions of Down’s syndrome from within hearts
- Positive About Down Syndrome – a website for parents by parents with stories and photos to reassure, inspire and show you the reality of life with Down syndrome
- Ipsea EHCP Planning – Independent Parental Special Education Advice regarding EHC PLANS (Education, Health, & Care). An EHC plan is the document which replaces Statements of SEN and Learning Difficulties Assessments for children and young people with special educational needs.
A selection of links which may prove useful to new parents
- Down’s Syndrome Association – there is a new parent pack you can download: http://www.downs-syndrome.org.uk/download-package/new-parents-pack/Membership is free if your child is under 1 year old (£15 pa thereafter). You can join, here: http://www.downs-syndrome.org.uk/membership-join-the-dsa/
- Disability Living Allowance – general information regarding DLA on Govt website.
https://www.gov.uk/disability-living-allowance-children – specific to children
‘Contact a family’ can help complete this by calling 0808 8083555 or also Sendiass (see below) - Carers Allowance – £62.10 per week as long as you don’t earn more than £110 per week after tax and child care costs and your child is in receipt of either mid or higher rate care DLA.
- Sendiass – for help with completing DLA forms and other advice. http://www.cornwallsendiass.org.uk/
- Early Years Inclusion service:
- http://www.cornwall.gov.uk/education-and-learning/schools-and-colleges/special-educational-needs-file/information-advice-and-support/council-services/childrens-psychology-service/early-years-inclusion-service/ Portage, CDC etc. Portage will introduce you to the
Development Journal, which can also be found here: http://www.ncb.org.uk/media/884631/early_years_developmental_journal2013.pdf
- http://www.cornwall.gov.uk/education-and-learning/schools-and-colleges/special-educational-needs-file/information-advice-and-support/council-services/childrens-psychology-service/early-years-inclusion-service/ Portage, CDC etc. Portage will introduce you to the
- Family Fund For help funding iPads, holidays, wheelchairs etc. http://www.familyfund.org.uk/
- Cerebra Further help with DLA forms etc http://w3.cerebra.org.uk/
- Contact A Family Also assist with DLA forms and information. Call 0808 808 3555 http://www.cafamily.org.uk/
- Makaton What is it and how will/can it help? Signing and symbols for those with developmental delay and communication challenges. http://www.makaton.org/
- Symbol UK What are they and how can they help? Private, specialist Speech and Languauge. http://www.symboluk.co.uk/ (See tips and things you can start doing now, further down in the document)
- Positive About Down Syndrome – a website for parents by parents with stories and photos to reassure, inspire and show you the reality of life with Down syndrome
You can also download a summary of the links here including the summary of things you can start doing now regarding communication from Symbol UK