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 DSMIG

  • DSA – “Tell it Right, Start it Right” Campaign: Training for delivering a T21 diagnosis.
    Access Training

  • National Down Syndrome Policy Group (NDSPG): Promotes inclusion and policy change.
    Visit NDSPG

  • Makaton 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.

  • International Mosaic Down Syndrome Association (IMDSA): Resources for mosaic Down syndrome.
    Visit IMDSA

Financial and Benefits Support:

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. Search “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 London

  • DS Achieve (Hertfordshire): Training and support for families.
    Visit DS Achieve

  • Wouldn’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

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