Resources

New Zealand Down Syndrome Association (NZDSA)

The NZDSA works alongside families, whanau and carers to support and empower people with Down syndrome to realise their potential and aspirations through all life stages and within all communities. The supply resources and new parent packs. When you sign up to the WDSA, we'd recommend you sign up to the NZDSA too (and vice versa).

There are loads of great resources on the NZDS website - like creating a positive hospital experience, planning for the future and living with Down syndrome - aimed at all ages and stages.

Self-advocacy group STRIVE are part of NZDSA. They meet regularly for training and workshops.

NZDSA video resource, Turn the Page with Me, demonstrates how parents can share books to support both their child's spoken language development as well as literacy skills. NZDSA members who have a child who is six years of age or younger are entitled to one free copy.

NZDSA Website

The IHC Library is free to use and open to anyone living in New Zealand. The library has an excellent online catalogue containing information on all aspects of intellectual disability, autism and other developmental disabilities, built up over many years. It’s free to join and borrow from – you can order books and DVDs online and they will be sent out. The only cost is returning the books if you chose to do so by post – it’s free to drop them back into their Willis St branch in Wellington.

They hold an excellent resource by DSE to help children with sign.

The IHC Library is also kindly looking after the WDSA resources to make it easy for people to borrow them.

IHC Library

IHC Website

Wellington Early Intervention Trust (WEIT)

The Wellington Early Intervention Trust is an independent charitable trust accredited by the Ministry of Education to provide early intervention services to preschool children 0-5 years from the greater Wellington region.

WEIT offers a centre based programme for families who have a young child with developmental delays (physical, intellectual or behavioural). There are four specialist therapies; Music Therapy, Physiotherapy, Speech Language Therapy, Early Intervention Teaching.

WEIT Website

And there’s many more…

Child Disability Allowance / Disability Allowance

Every child with Down syndrome is entitled to a fortnightly payment in recognition of the extra care and attention needed for that child.

Over 18s can access the Disability Allowance. Depending on the circumstances, you may be able to get both at the same time.

Needs Assessment & Service Coordination (NASC)

When your child is diagnosed with Down syndrome, a needs assessment is a step towards getting support or services, like respite care and individualised funding, for your child and family. Capital Support is Wellington’s NASC.

Individualised Funding (IF)

IF is available throughout New Zealand for eligible people who have either a Home and Community Support Services or Respite allocation. IF gives disabled people more choice in how they are supported. You can get IF after a NASC.

International Organisations

Down Syndrome International (DSI): committed to improving quality of life for people with Down syndrome, promoting their right to be included on a full and equal basis with others.

Down Syndrome Education: thought leaders in Down Syndrome education. Sue Buckley has years of research to back up DSE’s tools and courses.

Speech Language Therapy (SLT)

Upside Downs provides funding so your child can have private speech therapy. There can be a long wait list so it’s a good idea to sign up as soon as possible.

Local therapists include: Christian Wright; Camilla Peet; Vocal Saints; Inclusive Communication

New Zealand Government

Whaikaha - Ministry of Disabled People: the new ministry set up in partnership with the community and Māori to transform the lives of the many New Zealanders living with a disability.

Ministry of Education: loads of useful resources

Health & Disability Commissioner: promotes and protect the rights of consumers as set out in the Code of Health and Disability Services Consumers' Rights.

Are we missing anyone?

Please let us know if you are aware of an organisation, support network, local group or activity that should be listed here but isn’t.

Entitlements, Grants & Freebies

-Glasses subsidy
-Funded Nappy Service (4 years & over)
-Mobility Parking Permits
-Numicon Kits for early maths
-Halberg Activity Fund grants for sport

Support Networks

Parent to Parent operates a parent support network for families raising children with a disability through initiatives like coffee groups and sibling camps.

Care Matters can link you to workshops throughout New Zealand (facilitated by other parents and tailored to local needs). The website has a range of online resources.

Carers NZ exists to support our country's family, whanau, and aiga carers.

Your Way | Kia Roha (Formerly Imagine Better) is a charitable trust dedicated to helping disabled people thrive, living the lives they choose in their communities.