The long road to diagnosis

Glynis and Shane were married in 1985 and each brought three young children from previous marriages into the relationship. Although Shane had experienced medical problems for some time, he had no obvious symptoms and had not been diagnosed for the condition he referred to as “It”. After a serious attack which occurred on their honeymoon, Shane and Glynis embarked upon what would turn out to be a 27-year struggle for certainty involving countless medical professionals, case managers, funding bodies, tests, and surgeries.

One of the initial diagnoses was Multiple Sclerosis (MS) however the many neurological specialists Shane and Glynis saw could not agree. It was not until 1989 that Magnetic Resonance Imaging (MRI) technology become accessible in Victoria and Shane was one of the first people to be tested. The result? A form of MS which was so unusual that the doctors wanted to write Shane up in the Australian Medical Journal. Unfortunately, this brief moment of clarity about Shane’s condition was not to last. A week later the diagnosis was thrown into doubt when the machine was found to be faulty.
In 1991 Shane had another MRI scan. The doctors told them they were “pretty sure” that Shane had slow progressive/attacking MS. In the absence of any other information to rely on, this was how they referred to his condition for the next 13 years.

It’s ok to ask for assistance

Shane’s condition made him moody, depressed and frustrated and placed huge emotional strain on their marriage. There were constant arguments about money and Shane hated the fact that he was no longer able to provide for his young family. The line between wife and nurse was blurred as Glynis provided at-home care for Shane; she was married but lacked a life partner with which to share things. Even as Shane’s medical needs were being met, the emotional needs of the family were being ignored.
Like many people who are thrust into the role of caring for a family member, Glynis was reluctant to ask for assistance. She felt the act of caring to be her duty as a wife and mother and thought asking for help would be a sign of failure.

Eventually though, she was convinced to look for support and began to apply for funding to assist with personal and home care.

Finding the right support

In the 1990’s, access to funding and care services was vastly different from the model we have in place today. Shane’s funding package was extremely limited and did not stretch to cover things like after-hours care, which would have made an enormous difference to his and Glynis life. Applications for funding had to be submitted every three months, an exhaustive process. Finally, Shane was granted In-Home Accommodation Support (which later became Home First/ Individual Support Package) and the family undertook an assessment to determine how many hours of care they would receive. They were granted just 26.75 hours per week, which was eventually increased to 34 hours as Shane’s health deteriorated. While this still left a huge burden of work on Glynis’ shoulders, these 34 hours of care allowed Shane to stay at home and avoid the necessity of full-time care, which he adamantly did not want.

Throughout the subsequent years of his illness, there was constant communication and review of Shane’s Care Plan. His Case Manager performed monthly home visits, and his Care Plan was reviewed every six months and updated as Shane’s health became progressively worse. Physiotherapists, Occupational Therapists and Speech Therapists were also involved in regular case meetings. While there was always a number of stakeholders involved in Shane’s care, Glynis was careful to maintain control and dictate the terms of the relationship between Case Manager and participant. As Shane’s primary carer and advocate, Glynis knew exactly the level of care and support the family needed.
It is clear when speaking to Glynis that the success of a support plan rests on the ability of the participant and their family to determine their own needs. Patient led planning which is appropriate to a participant’s unique requirements is key to delivering better outcomes.

Encountering ableism

The social model recognises that disability arises from the physical barriers, digital barriers and barriers of communication and attitudes that people encounter. In this way, the impairments caused by Shane’s illness were magnified by the ableist environment in which he had to operate.

There are many ways in which ableism is expressed and Glynis and Shane experienced all of them. Glynis recounts Shane getting stuck in automatic doors and medical clinics that didn’t have wheelchair access. She remembers people who questioned the family’s decision to care for Shane at home, wondering why they didn’t ‘just put him in nursing home’. She recalls others who considered Shane to be ‘playing up’ his symptoms, especially in the early years before a diagnosis was made. Glynis points to the more subtle ways in which language can be used to demean or degrade disability and is a fierce advocate for the use of inclusive language. (link to Inclusive Language Blog)

Working with disability

Shane had Multiple Sclerosis for 27 years and was in varying degrees of pain throughout his entire illness. After the serious attack which occurred on his honeymoon, he was forced to give up his very physical job as a butcher, but his disability did not exclude him from the workforce altogether. A Commonwealth Rehabilitation Services (CRS) scheme arranged for a six-week work experience stint which led to six months paid employment. A second program within the Department of Agriculture Victoria lasted for eight years of permanent part time employment. Shane was able to perform his duties thanks to a motorised wheelchair, highlighting the importance of making assistive technology available and affordable.

From carer to career

Shane passed away peacefully in his home in 2004, aged 49 and just shy of their 20th wedding anniversary. Glynis was 47 years old.

A short time after Shane’s passing, the service provider for Shane’s care called Glynis and asked her to interview for a position. She was successful and began working as a Care Program Coordinator. Having already completed a Certificate IV in Disability, she returned to school and obtained the Advanced Diploma in Disability Work. Her career progressed further with a role as Team Leader, and then Business Manager of Home Support with St. Laurence Community Services. She is currently studying for the Bachelor of Applied Science (Disability).

While caring for Shane, Glynis also became a powerful advocate for disability support. She has sat on the respite committees for both MS Society of Victoria and the Western Region Disability Network (WRDN). She has been the Vice Chair of MS Australia Advisory Council, advising the board on carer issues. Glynis has been nominated for numerous awards including the 2010 Brainlink Women of Achievement Award and 2012 MS International Federation Award for carers.

Despite her achievements, Glynis is self-deprecating and says she has only done what thousands of other carers do every day.

Glynis continues to work full time as a State Operations Manager for Healthcare Australia.

How the NDIS is changing Disability Services

Glynis and Shane’s experience with healthcare service in Victoria predate the NDIS, which has led to improvements in the provision of care and access to assistive technology. The NDIS individual funding model provides more choice and flexibility, empowering people to select their own service providers.
Glynis notes that there is no standard approach to working with people with disability. Everyone is different, which is why a tailored care plan is so critical. At Healthcare Australia, our Client Services Team work with participants to understand their requirements, and then comb our network of healthcare professionals to find the right support team. Healthcare Australia Support Coordinators focus on sustained support and building lifetime connections to help participant reach their goals. Support Coordinators are in turn assisted by Healthcare Australia in navigating the bureaucratic maze of NDIS standards and funding.

The National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measures) Act 2022 which was passed in March 2022 will further reduce red tape and increase flexibility for participants, their families and carers. The Act is informed by significant community consultation with people with disability and advocates just like Glynis, whose personal experiences give them unique insight into the ways in which we can improve Disability Services in Australia.
As one of Australia’s leading NDIS providers, Healthcare Australia welcome the changes that are occurring in the Disability Services sector and the government’s commitment to consultation with people with disability, their families, carers and representatives in developing the national strategy.

The success of Healthcare Australia relies on the diverse workforce we bring together to facilitate the care plans of participants. The breadth and depth of experience our network represents allows us to find the right support team for every individual. Through extensive consultation with participants, we create a tailored care plan that will help them achieve their short- and long-term goals. Many Healthcare Australia healthcare professionals have lived experience of disability and can empathise with participants, whilst drawing on the organisation’s 50 years of experience in planning and coordinating support needs.