AHDA (Vic) Inc. staff can provide information and assist people to make contact with a range of helpful services which support people affected by HD in Victoria. These include specialist services and general services in local communities.
SPECIALIST HD CLINIC
AHDA (Vic) Inc. staff members attend and support the specialist HD Clinics run by HD specialists, Associate Professor Edmond Chiu at St Georges Hospital, Kew and Dr Andrew Churchyard who also works from this Clinic. Dr Churchyard also holds an additional clinic for for people with HD at Bethlehem Hospital in Caufield.
AHDA (Vic) Inc. staff supporting people with HD may recommend a review at a specialist HD Clinic to assist in providing the best care.
In addition staff from AHDA (Vic) Inc. liaise with other medical specialists and General Medical Practitioners, with permission of clients with whom they are working
Information about these HD Clinics or liaison with medical practitioners can be obtained by contacting AHDA (Vic) Inc .
PREDICTIVE TESTING
In 1993, the gene responsible for Huntington's was discovered. This enabled an accurate pre-symptomatic test to be designed. Now, a blood sample of a person who is "at risk" can be analysed to determine whether the HD gene is present. Those "at risk" can therefore know if they will develop the disease.
The predictive test is performed at Genetic Health Services Victoria in Melbourne, which is located on the campus of the Royal Children's Hospital.
A predictive test coordinator and specialist medical team ensure that the person wishing to take the test receives appropriate information and counselling.
Choosing to have a predictive test is a very personal decision. AHDA (Vic) Inc. provides information to people who are at risk and want to consider the pros & cons of testing before making contact with the Predictive Testing Service.
AHDA (Vic) Inc. has produced a video called "Freedom of Choice ". In this video a number of real people discuss their views and feelings about predictive testing and the decisions that were right for them. It is available on loan from the Association.
ARTHUR PRESTON RESIDENTIAL SERVICES
Arthur Preston Residential Services (APRS) is a world renowned program of Wesley Mission Melbourne funded by the Disability Division of the Department of Human Services, Victoria to provide long-term residential care for 30 people in the later stages of HD.
WMM have been operating this service since 1981 when it was established as the first specialist HD residential care facility in the world and is now housed in a purpose built facility.
Whilst people affected by HD are keen to have an opportunity to live in the APRS when the time comes for out of home care, this is not always possible. Currently approximately 150 people require residential care of some kind in any year in Victoria, so 30 long-term beds at APRS cannot meet the level of demand. WMM have developed a set of eligibility criteria for their service. At the time a vacancy occurs, staff at APRS seek a recommendation from AHDA (Vic) Inc. about the person whose care needs, at that time, most closely match the APRS criteria.
OTHER RESIDENTIAL SERVICES
In 2005, 132 people in Victoria require residential care, only 30 of whom can be accommodated at APRS. So in fact most people with HD who need residential accommodation reside in Special Residential Accommodation facilities or Aged Care Hostels or Nursing Homes. AHDA (Vic) Inc. works closely with these facilities to ensure a high quality of care is provided, by monitoring the specialist HD issues, providing staff education and information and providing consultation re care.
AHDA (Vic) Inc can provide information or assistance with residential care services for people with HD.
