Jacquie Petrusma

Jacquie Petrusma MP - Member for Franklin
HEALTH - HUNTINGTON'S DISEASE
May 26th 2011

Recently, along with the shadow minister for health, Jeremy Rockliff, I met with the Huntington's Disease Association about the difficulties that are faced by people with this disease and the difficulties they face in having their health and care needs met. As members may be aware, Huntington's Disease is a health or neuropsychiatric condition. However, the course of the disease means that people with the disease do not reach a stable level of functioning and their condition continues to deteriorate over time - for up to 15 years - until the person is bedridden, unable to speak, has swallowing difficulties, is emaciated, has dementia and perhaps also suffering a serious psychiatric disorder. This is a disease that causes progressive deterioration and disability and the lack of knowledge of the disease and the high level of unmet need is extremely concerning.

The concerns of the association are as follows. Firstly, currently those with Huntington's Disease who are 65 years of age and over are referred for packages of care; residential respite services and permanent residential care through ACAT. On the other hand, people under the age of 65 previously referred for assessment and ISPs through Disability Services are now referred to Gateway services. While there are some special provisions through the Younger People with Disability in Residential Aged Care Program for people under the age of 50, for those aged between 50-64 there are no special provisions and these people are forced to rely on underfunded Gateway services and limited HACC services. ACAT has been unwilling to assess people under the age of 65 without a letter from Gateway services. For clients and their families and carers what services are available for respite and permanent residential care remains unclear, despite meetings being held with Gateway to determine the level of support available.

Secondly, there is a general lack of awareness of the disease amongst services. One service rang a client to ask if the client wanted services but as the client has Dysexecutive Syndrome - that is, difficulty in processing thought, comprehension and speech, which therefore causes problems with everyday decisions - services were refused. The client was and remains very much at risk. The case manager was not consulted, nor anyone else providing direct care. As well, there is a lack of awareness from Mental Health Services despite efforts to bring these to the attention of senior management in Mental Health Services.

Thirdly, there are limited services available under HACC services and often these are used until the need outstrips the availability of service hours and an individual support package becomes critical. Fourthly, individual support packages. It is difficult to get any sort of package without prolonged waiting times and now, with no more funding available for ISPs, there is little hope that an individual will receive one. Fifthly, planning. Because of the documented progression of the disease people with Huntington's Disease and their families and carers need to map out a plan and have that put in writing before the client loses cognitive competence.

In the past when ACAT was willing to accommodate younger people with the disease the person was introduced to respite and other care facilities prior to that care being needed, but with changes to services, pathway planning is not being conducted and care and support is more reactive, often resulting in the hospitalisation of those needing high-level care.