Once reality hit home, I looked around to see what help was available to us. Although I feel that there is not enough assistance available to sufferers of serious illnesses and their Carers, there are quite a few schemes and programs if one knows how to access them. I remember when I first decided to see what help was available to me. I rang one organisation, explained my situation, and asked what help they could provide. I was politely referred on to another organisation. I rang them and was again referred on to yet another organisation. After four, maybe five telephone calls, I ended up being referred back to the first person that I had telephoned. To say I was frustrated would be an understatement.
Eventually, I was able to make some headway and gradually became familiar with what was available to us. Some of the organisations I am aware of and have used here in Melbourne are:
Victorian Aids and Equipment Program
Once again, I must point you to the disclaimer at the foot of the page.
Bethlehem Hospital is a public Hospital owned and operated by the sisters of the Little Company of Mary. Their web site is www.bethlehem.org.au (http://www NULL.bethlehem NULL.org NULL.au/). They provide the following services:
Community Nursing Service
Provides nursing and other support in the home to patients suffering from progressive neurological conditions. This service operates within a 15km radius of the hospital.
Community Palliative Care Service
Provides multi disciplinary palliative care for patients wishing to remain in their own homes. This is delivered in conjunction with families, friends, volunteers and local health professionals.
Home Respite Services
Provides in-home respite, by trained care assistants, to support primary Carers looking after a person with a progressive neurological condition at home.
Day Care Centre
Provides nursing support, outpatient therapy programs, day respite and other activities for neurological patients who wish to attend on a day basis.
Provides a comprehensive support service to health professionals in the care and management of motor neurone disease and other progressive neurological disorders.
Palliative Care Consultancy
Provides specialist nursing, medical and allied health consultancy for community based palliative care patients, including support for people residing in nursing homes and other supported residential accommodation.
Allied Health Services
Provides a broad range of Allied Health Professional Services to both inpatient and community based clients. This includes support and consultancy services to patients living in residential accommodation and nursing homes.
These services include:
Speech Pathology – see below
Bethlehem Hospital Speech Pathology Department provides comprehensive and quality care to people with chronic and progressive illnesses. For some, this may include problems with communication and/or swallowing. The Speech Pathology Department is responsible for providing assessment and management for people who experience changes in communication, swallowing and secretions. Clinicians also provide counselling and support to patients, families and Carers as they adjust to changes during the course of the disease.
Changes in swallowing can include:
sensation of food or drink caught in the throat
longer meal times
avoiding certain foods or drinks
coughing or clearing the throat during or after eating or drinking
Assessment involves discussion with the patient and Carers, observation of swallowing during eating and drinking and, in some cases, a videofluoroscopy (x-ray of swallowing).
The Speech Pathologist will suggest strategies that aim to make swallowing more manageable and meal times easier and more enjoyable. This might include changes in positioning, swallowing techniques or changes in the consistency of food and drinks. The Speech Pathologist can also provide information and counselling on alternative methods of feeding if this is appropriate.
Videofluoroscopy is a special x-ray technique that allows the Speech Pathologist to examine a radiographic image of a person’s swallowing recorded in real time. A videotape recording of the procedure can be viewed in slow motion or frame-by-frame for precise analysis of swallowing function. The clinician can trial various consistencies and strategies during the procedure. Patients, families and Carers can also view the videotape after the procedure. Videofluoroscopy is recommended when confirmation or clarification of the clinician’s swallowing assessment is required.
Trained volunteers enhance the quality of life for Bethlehem Hospital’s patients by providing a range of valuable services including support, massage, aromatherapy and companionship.
Pastoral Care and Chaplaincy
Provides spiritual and emotional support and understanding to those for whom we care, for their families and friends, always respecting their beliefs and wishes.
Provides bereavement follow-up offering support and comfort to recently bereaved relatives, friends and Carers.
Provides an anonymous telephone support service offering assistance to the community 12 hours a day 7 days a week between 12 midday and midnight.
Hospice Inpatient Unit
A 42 bed unit provides care for patients with life threatening illness. It offers acute symptom control, assessment, rehabilitation, respite and end of life care.
Neurological Inpatient Unit
A 30 bed unit provides care for patients with progressive neurological conditions. It offers acute care, assessment, rehabilitation, respite and end of life care.
An extensive educational support program is provided to individual patients, their Carers, community and professional groups on palliative care and progressive neurological disorders.
BrainLink Services is a Victorian based service that is dedicated to improving the quality of life of people affected by acquired disorders of the brain.
BrainLink’s first priority is to respond to the immediate needs of the families and friends of those who are living with an acquired brain disorder. Some of these conditions include stroke, head injuries, brain tumour and progressive neurological diseases such as Multiple Sclerosis, Parkinson’s disease, Muscular Dystrophy, Motor Neurone disease, MSA and Huntington’s disease.
The services BrainLink offer include:
•A first point of call for families at onset of diagnosis; •Peer support programs; •Innovative and flexible respite opportunities;
•Specialised case management for individuals with severe brain disorders;
•Comprehensive information and resources;
•A referral service to assist the community in navigating the disability service sector.
BrainLink is a certified provider as per the Department of Human Services Standards (including Standards 8 & 11 of the Disability Services Standards (FaHCSIA) 2007).
Valid from August 2013 – August 2016.
Toll free 1800 677 579
www.brainlink.org.au (http://www NULL.brainlink NULL.org NULL.au)
MonashLink Community Health Service provides a comprehensive community health service to the City of Monash operating from three main sites: Hughesdale, Glen Waverley and Clayton (Dental Clinic), with outreach sites in Brandon Park and Mulgrave.In line with the City’s demographic profile, the major emphasis is on aged care services (allied health and community health nursing), services to people with chronic illnesses, women’s health services, counselling, family, youth and community support and dental health.More than 66 direct care services, groups and programs are provided.MonashLink has successfully joined with other organisations to extend its role including the Eastern Alcohol and Drug Service Consortia, Monash Health Promotion Network and Eastern Region Community Health Centre’s Alliance.I have used MonashLink on several occasions. Quite often when one is trying to get equipment on loan, the organisation providing the equipment requires an assessment and recommendation from an appropriately qualified person, such as an occupational therapist, from an organisation such as MonashLink.I would imagine that all City Councils have an organisation similar to MonashLink.
The Peter James Centre
The Peter James Centre provides the following services:Public hospital providing specialist assessment, rehabilitation, advisory and psychiatric services to older and disabled persons.
General medicine and aged psychiatric assessment, short-term rehabilitation and aged psychiatry residential care provided.
Nursing and Medical Services, Physiotherapy, Occupational Therapy, Social Work, Speech Pathology, Dietetics, Podiatry, Neuropsychology, Transcultural Services Officer, Patient Advocacy
Community Rehabilitation Centre
Cognitive Dementia & Memory Service (CDAMS)
Movement Disorders Clinic
Rehabilitation in the Home Program
The Kingston Centre
The Kingston Centre is a rehabilitation centre providing a range of specialist health and community services to older people within the Southern Health Care Network. The Centre’s Movement Disorders Clinic specialises in the outpatient management of people with Parkinson’s Disease and other similar neurological movement disorders.Patients referred to the clinic are seen by a team comprising a specialist doctor and allied health professionals who assess the patient’s medical condition and advise on appropriate medical and rehabilitative management.The clinic is staffed by health professionals with extensive experience in the management of movement disorders in the fields of neurology, physiotherapy, occupational therapy, speech pathology, social work/counselling and psychology/neuropsychology.
The Villa Maria Society
The Villa Maria Society provides a range of home and centre-based services for older people and people with disabilities to assist them in their choice to remain living in the community.The Society also manages Carerlinks Respite Centre in the Eastern Metropolitan Region which provides a respite booking service in nursing home aged care facilities and a vacancy accommodation register.Villa Maria Community Care Packages provide older people with an alternative to admission to a hostel. This assistance is available across Victoria.
A designated care manager assists with the development and arrangement of a specific individual package of care and support provided to the person in their own home. The care manager continues to monitor and support the person while they receive this service.
UnitingCare Community Options
UnitingCare Community Options, formerly Inner East Community Options, is a program that coordinates support for eligible people of all ages, from newly born to the elderly, and their Carers. Assistance is provided to enable people with special needs to safely remain in their community and maintain their dignity. The program is auspiced by the Uniting Church and funded by the State and Commonwealth Governments.People who are eligible for this program are assigned to a care manager who develops a care plan and then manages that plan by negotiating with the relevant service providersA reasonable fee for service is calculated subject to one’s financial situation. No one is excluded from the program because they are unable to pay
Victorian Aids and Equipment Program
The Victorian Aids and Equipment Program (A&EP), formerly known as the Program of Aids for Disabled People (PADP), is a program operated by the Victorian State Government. The program provides appliances to enable people to continue living at home in order to avoid premature or inappropriate residential care.People with a permanent or long-term disability can apply to the A&EP for assistance in acquiring special equipment such as wheelchairs (electric and manual), electric scooters, oxygen cylinders, hospital beds, surgical shoes, home hoists, special underwear (for incontinent people), and so on. The A&EP will also consider upgrading bathrooms to meet Australian standards for disabled people up to a maximum of $4,000. Wheelchair ramps can also be provided.To be eligible for assistance from the A&EP, you need a written referral or report from a doctor or HealthCare professional such as an occupational therapist.Any equipment supplied by the A&EP remains the property of the A&EP and must be returned to them when it is no longer needed. A&EP will repair and/or maintain items which have been issued under the program.
ComTEC is a service of Yooralla and offers services throughout Victoria to people of all ages with a disability who have communication and technology needs. The ComTEC team consists of speech pathologists, occupational therapists, educators and technicians with expertise in communication and technology for people with disabilities.
Independent Living Centre
The ILC assists people with disabilities to enhance their independence and quality of life by providing advice and information on daily living aids and equipment. The centre has a large range of aids and equipment on display at its facility at the Yooralla Centre on the Geelong Road in Brooklyn. Items can be demonstrated, advice given by therapists and visitors can try out products to determine which equipment best suits their needs.Items on display include household and kitchen items, seating, bathroom and toilet fittings, building fixtures and design, beds, clothing and dressing, eating and drinking implements, manual and electric wheelchairs, electric scooters, hoists and lifting equipment, communication devices and incontinence aids.You don’t necessarily have to visit the Centre to get information. You can ring up and enquire about certain items of equipment and they will interrogate their on-line database and print off the results which can be mailed or faxed to you.
Carers Association Victoria Inc
CAV offer a telephone/referral service providing information, support and referral through their Care Information Line to Carers, service providers and other interested people. In addition they provide representation on Carer issues, networking with other peak bodies, and distribution of information including Carer Support Kits in 10 community languages and English.
Do Care is a Wesley Central Mission program whose objective is to increase the social networks of people over the age of 60 by establishing a one-to-one friendship with a volunteer. Activities include going for walks, going to the cinema, or just sitting and talking.Do Care also provides a Telelink service whereby up to ten people can communicate by telephone each week from the comfort of their own homes. The hook-up lasts for about 45 minutes and equipment for people with special needs can be supplied by Telstra.
Carerlinks Eastern provides a range of respite services for Carers of older people, of people with dementia, acquired brain injury and other disabilities with respite, co-ordination, information, funding and counselling support. Single or multiple respite options are available to give family members a break and include planned and emergency in home and out of home support, holidays, leisure activities and provision of communication and specialised equipment.
Technical Aid to the Disabled Victoria is an organisation whose volunteer members have a broad range of design, engineering and technical skills. The volunteers design, construct or modify equipment for people with disabilities provided no commercially available product or service will meet their needs. There is no charge for the TADVIC service but clients are asked to reimburse the volunteer for any cost of materials and travelling expenses incurred.If you would like to leave a comment, click here (http://www NULL.surfcoastwombat NULL.com/looking-back/)to go to the Comments page.DisclaimerThe information contained on this Web site is intended as a guide to assist visitors to this site looking for information on MSA and related issues. It is not a substitute for diagnosis, prognosis and treatment provided by a qualified medical practitioner. Some people, particularly those in the early stages of MSA, and/or their Carers, might find some of my information upsetting.
In addition, this site provides links to other Web sites that contain information that may be of interest to visitors to this site. I recommend people check out these sites, but I can not guarantee the accuracy, completeness or timeliness of information presented at these sites.