About Complex Care Group

Support, connection & a voice for our community

Complex Care Group is here to provide information and support for family’s and carers who are providing an intensive level of care for a disabled child/young adult,  who also has either multiple disabilities, a serious, ongoing medical condition and/or behavior that requires a high level of support. We aim to provide a collective voice for these  carers and an opportunity for them to network with other members, as well as raising the awareness with the Ministry of Health, funders and service providers of the specific issues that face our community.

 


Background
  • The Complex Carers Group Project grew out of concerns expressed by families in the Just Surviving Review published in December, 2000.
  • The Wilson Home Trust initiated a project in 2001 to set up a national body to provide support and a collective voice for families.
  • In 2002 the Ministry of Health made funding available for new initiatives to support family/whanau carers.
  • A pilot study was undertaken in 2003/4 in Waitakere City to inform the process for the development of the group nationally and to identify specific needs of this group. Associate Professor Anne Bray from the Donald Beasley Institute provided the research/mentor role.
  • In 2005 following the evaluation of the Waitakere City pilot study the Complex Carer’s Group was contracted by the Ministry of Health to become a national group.
  • The group became a special interest group under the umbrella of Carer’s New Zealand until 2011 and is now its own legal entity and known as the Complex Care Group Trust
  • Complex Care Group was registered with the Companies Office in July 2012 and received charitable status with the Charities Commission in March 2013. The Charities Commission registration number is CC49033
  • The board of the trust consists of four current family carers of children/young people with intensive support needs and 2 other members with passion and skills to support this population.
 

What is a “complex” disability?

Our definition is one that requires intensive support:

  • Because the person has multiple disabilities, i.e. is physically disabled and has an intellectual disability
  • Is disabled and has a serious ongoing medical condition, i.e. epilepsy
  • Is disabled and has autism spectrum disorder or behaviour that requires a high level of support
 

The role of Complex Care Group is to:
  • Provide information and support to families who have a child/young person with intensive support needs
  • Provide opportunities for families to connect to others in similar situations to themselves to share ideas and experiences
  • Provide information to government agencies and service providers about the unique needs of this population.
 

CCG supports its members by:
  • Being a listening ear for families
  • Helping families navigate the complex systems and processes of the disability sector
  • Providing relevant updated information to families by phone, e-mail or on the website
  • Identifying and reporting to those who can make a difference the unique issues these families face. Highlighting the gaps in services and resources and providing input into relevant policy and service development.
  • Ensuring that the CCG Trust board has no less than three trustees who are current or recent carers of a child/young person with intensive support needs and that the remaining board members have a real understanding and passion for this population.
  • By providing opportunities for families to connect with others in similar situations.