Introduction

The following is one of a group of principles which recognise the particular needs of children and young people receiving health and disability support services. The principles describe what should be provided when your child or young person receives those services. They are based on expert opinion and a considerable body of literature in New Zealand and overseas and they have been developed after wide consultation. See all the principles listed in Principles: what health and disability services should provide for your child or young person.

Create long-term support systems centred on the individual

• co-ordinated
• relevant
• can be changed to meet the changing needs of the child or young person and their family

Families involved with multiple providers need to be informed about the roles of all providers.

You should have one person who co-ordinates services for your child or young person and ensures that long-term services and support are available.

Wherever transitions are necessary (such as from paediatric services to adult services), the transition should be carefully planned, well in advance. At least one individual provider should stay with you and your child or young person after the transition, until the new services are well established.

Family-to-family support

• mutual support and friendship
• information gathering and sharing
• ideas for improving the delivery of health care services

People often find that more help comes from strangers with the same problem than those close to them because the latter are also distressed and need support.

Mutual support is very effective because participants learn that other people have similar feelings and that these feelings can be normal in their circumstances. They are encouraged by the observation that they too, in turn, can become helpers rather than clients.

Parent-to-parent support can take many forms, including:

• formal support groups that meet at a regularly scheduled time (see Support Groups A-Z )
• informal networks and support

Parent-to-parent groups do not replace physicians, therapists or other professionals. The development of written resources and programmes containing medical information or educational information should be guided or reviewed by professionals with appropriate expertise. Professionals developing services for families should draw on the special expertise of families.

Where to go for more information

On this website
Disabilities or chronic conditions - support
Well Child / Tamariki Ora services for under fives

Acknowledgements