Appendix: Resources for Families and Professionals
1. Resources for Professionals
Down Syndrome Medical Interest Group (DSMIG): National group offering guidance and training for clinicians.
Visit DSMIGDSA – “Tell it Right, Start it Right” Campaign: Training for delivering a T21 diagnosis.
Access TrainingNational Down Syndrome Policy Group (NDSPG): Promotes inclusion and policy change.
Visit NDSPGMakaton Charity: Training and resources for professionals and families.
Visit Makaton
2. Information and Support for Families
National Organisations:
Down’s Syndrome Association (DSA):
Helpline: 0333 1212 300
Email: info@downs-syndrome.org.uk
Provides Red Book Down Syndrome inserts and new parent packs. Visit DSA
Down Syndrome UK (DSUK): Online communities and support. Visit DSUK
Positive About Down Syndrome (PADS): Online parent support. Visit PADS
Down Syndrome International (DSi): Promotes inclusion and WDSD. Visit DSi
Health and Medical Support:
Down’s Heart Group: Support for heart conditions.
Helpline: 0300 102 1644 - Visit DHG
International Mosaic Down Syndrome Association (IMDSA): Resources for mosaic Down syndrome. Visit IMDSA
Financial and Benefits Support:
Mencap – Wills and Trusts Service: Financial planning guidance. Learn More
Family Fund: Grants for families. Visit Family Fund
Citizens Advice – Watersure Scheme: Help with water bills. Visit Citizens Advice
Barnet Local Offer: Disability Access Fund (DAF) and Early Years SEND Inclusion Funding (SENIF). Explore Barnet Local Offer
3. Local Barnet Organisations
Barnet Local Offer: Local services directory. Barnet Local Offer
Barnet Mencap: Family support services. Visit Barnet Mencap
Barnet Carers: Carer support services.
Barnet Parent Carer Forum: Family advocacy group.
Barnet Parents WhatsApp Group: Join via BUDDS Contact Page
Barnet Leading Edge Group (LEG): Guidance for supporting children with DS in schools. Visit LEG
The BIG-DS Hub (Barnet Integrated Group for DS): Integrated support for preschool children with DS. BIG-DS Hub Poster
4. Support Groups (UK and Online Communities)
Future of Downs (Facebook): Online parent support. “Future of Downs” on Facebook.
Downright Excellent: London-based therapy programs for children with DS. Visit Downright Excellent
Up on Downs (Hertfordshire): Parent-run support group. Visit Up on Downs
Down Syndrome Scotland: Family support services across Scotland. Visit DSS
Down’s South London: Free early intervention therapy for children with DS.
Visit Down’s South LondonDS Achieve (Hertfordshire): Training and support for families.
Visit DS AchieveWouldn’t Change A Thing: Awareness campaign sharing life stories from the DS community. Visit Wouldn’t Change A Thing
Down Syndrome Research Foundation UK (DSRF-UK): Research and evidence-based interventions. Visit DSRF-UK
5. Mental Health Support for Parent Carers
DSA Parent Carer Mental Health: Resources to support parent carers. Parent Carer Mental Health
DSA Listening Service: Free 40-minute Zoom support sessions. Access Listening Service
Well-being Wednesday for Parent Carers: Weekly peer support sessions. Well-being Wednesday
6. Additional Parent and Carer Resources
Care for the Family – Positive Parenting Courses: Workshops and online courses. Visit Care for the Family
SNAP Charity (Special Needs and Parents): Family support and a useful resource directory. Visit SNAP
Cerebra: Supports families of children with brain conditions. Visit Cerebra
Newlife Charity: Provides essential equipment for disabled children. Visit Newlife
Caldwell Children: Funds therapies and treatments for disabled children. Visit Caldwell Children
Homestart Barnet: Home-visiting volunteer support for families. Visit Homestart Barnet
ADDISS (ADHD Information and Support): ADHD resources and parent groups. Visit ADDISS
SENDIASS Barnet: Free, impartial advice for parents regarding EHCPs and SEND processes.
Visit SENDIASS