Definition Document

Children and Adults with High and Complex Needs:

The unheard voices in our communities

There is a very small segment of the disabled population that needs to be recognised as different from the rest, with government policy allowing for these differences.  This minority sector of society is actually a distinct group in their own right whose extreme needs can span the spectrum of disabilities and medical conditions.  Their lack of recognition means they slip between the cracks of policy, services and funding.

Who are they?

These children and adults with disabilities are some of society’s most vulnerable citizens and may have some or all of the following:

• Multiple disabilities including sensory disabilities, physical disabilities, severe  intellectual disability, or serious and ongoing medical conditions

• Behaviours that may require a very high level of support

• A lack of  appropriate services or policies to meet their intensive support needs

• Often unable to voice their needs in appropriate forums due to their severe intellectual and learning disabilities

They will probably never work or earn a wage. Their needs may be expressed in such a unique way that only those close to them will understand.

Recognition that this small group of disabled people is a distinct group with diverse needs, which differ from other disabled people, is essential. When those who have high and complex needs are treated under the general disability umbrella, supports are not only inadequate, but in many cases non-existent.

Why has this happened?

For the first time society is seeing a number of developmentally delayed children reaching adulthood with complex illnesses and disabilities who would previously not have survived.  Many would not have lived until adulthood and for those that did the medications required to control their epilepsy and other neurological conditions would have left them heavily sedated and institutionalised.  Although they are now resident in ordinary communities, they are mostly invisible.  They are not able to voice their needs in appropriate forums, and for this reason their voices are not heard and policies and services have not been developed specifically to meet their needs.

It is important to note that society and government has not had to support these people in the past, outside of institutions, making them out of sight and out of mind. With the closure of institutions, however, many of the essential support services have not transferred into the community, resulting in families now being required to provide these supports. Many have outlived their initial prognosis and it is now clear that to provide appropriate and skilled support for this group it is costly in both financial and human terms.

So what are the issues?

Because of the complex and unique needs of this population group basic human rights are not being recognized. Through a lack of awareness and neglect these citizens and their carers are devalued.

People with complex needs are yet to find their voice within the disability community.

There is an emerging debate about who should be the voice for people with complex needs.  Barriers exist in the form of lack of knowledge and understanding about their existence, their vulnerability, their needs, unskilled and ineffective support staff, lack of services and funding that creates daily struggles for carers.

Parents’ influence is diminished, as society perceives the young person
as an autonomous adult.  However in many cases this is not a parental reality, as families continue to care for the young person/ adult with the cognitive ability of a child.

What is needed?

• Increased understanding and awareness that this group requires specialist support services (this includes in home and out of home support), and a workforce with the high quality skills to address their complex needs

• An awareness and acceptance by communities

• A voice that can be heard in all forums

• Assistance for family carers – those people who currently provide the natural supports for this group of children and adults within the disability community. Family  carers are often very isolated due in part to the high level of care they are required to provide. They also need support to navigate the numerous agencies that they must interact with.

Complex Care Group provides support, networking and information for the children, young people and families of this population.

For further information e-mail complexcarers@xtra.co.nz

Download this document here – Definition document