Principle 14: Create Long-term Support Systems Centred On The Individual

Introduction

The following is one of a group of principles which recognise the particular needs of tamariki and rangatahi receiving health and disability support services. The principles describe what should be provided when your child or young person receives those services.

The principles are based on expert opinion and a considerable body of literature in Aotearoa New Zealand and overseas and they have been developed after wide consultation.

See a listing of 14 principles guiding provision of health and disability services

Create long-term support systems centred on the individual

Principle: Healthcare and disability support providers of Well Child, chronic care or disability support services for tamariki (children) and rangatahi (young people) should ensure that long-term support systems are created which are centred on the individual.

Tamariki with ongoing health and disability support needs require services that are:

• coordinated
• relevant
• can be changed to meet the changing needs of the child or young person and their whānau (family)

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

You should have one person who coordinates 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

Healthcare providers need to promote and encourage family-to-family support and networking.

Family-to-family support provides:

• mutual support and friendship
• information gathering and sharing
• ideas for improving the delivery of healthcare 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
• 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 whānau should draw on the special expertise of whānau.