The below is written to give an acknowledgement to professor Martin Delatycki and doctor Louis Corben for their expertise in the medical conclusions of Friedreich Ataxia.
“Dr Peter Gibilisco was diagnosed with Friedreich ataxia at the age of 14 years. He is now 55 years old. Friedreich ataxia is a rare, progressive neurological condition. The main symptoms of the condition include initial unsteadiness in walking, fatigue, sleep disturbance, incoordination of the upper limbs, reduced balance, reduced hearing, difficulty speaking and significant heart involvement. The affected person eventually loses their capacity to walk and becomes dependent on a wheelchair for mobility. In addition they increasingly require assistance with most personal care tasks as the disease progresses. To date there is no known cure for this life-shortening, devastatingly progressive and debilitating condition.
Friedreich ataxia affects Peter in the following ways:
Mobility: Peter is dependent on a manual wheelchair for mobility and relies on a hoist plus maximum assistance of two people for all transfers. Peter can only wheel himself a metre or two hence requires assistance from another to move the wheelchair around his room. He relies on a wheelchair accessible taxi for all transport outside of the home. He requires customised wheelchair seating and back support to maintain postural control and stability. He requires customised wheelchair seating, and provision of an alternating air flow mattress and adjustable height bed to maintain skin integrity and prevent the development of pressure areas. Peter is unable to move himself in bed and given he occasionally requires toileting overnight he requires the availability of overnight care.
Accommodation: Peter currently lives in supported accommodation managed by Yooralla. He has resided in this facility since 2011. He has undergone a number of allied health visits to ensure he has access to the carer support he requires. This has proved problematic as his functional capacity has declined in line with disease progression and his carer requirements have proportionally increased. Prior to this move he lived in an accessible unit in Dandenong and received carer support.
Activities of daily living: Peter requires assistance in all areas of personal care including grooming (teeth-cleaning, shaving), dressing, showering, bed mobility and transfers. Peter is unable to feed himself however can administer drinks in a modified cup/straw once the cup is placed in his hand. He requires a carer to remove the cup on completion.
While Peter is continent he does have bladder frequency which means he is unable to delay attending to toileting needs once it is apparent it is required. He requires physical assistance with all aspects of toileting including undressing and dressing, positioning of urinal, transferring onto commode if required and hygiene issues.
Peter is unable to participate in any aspect of domestic activities of daily living.
Community and Social Access/Communication: Peter requires carer assistance and supported transport to access and participate in all community based activities.
Due to the nature of his condition verbal communication is exceedingly difficult for Peter. He is profoundly dysarthric (slurred speech) and has trouble coordinating his breath and speech therefore speech is effortful and exhausting for him. It is at times very difficult to understand what he is saying and needless to say this is a source of great frustration for Peter. He requires continual carer assistance to communicate his needs either by face to face contact, by phone or electronically. As such he is completely dependent on assistance from another person to maintain important social connectedness by social media and web based communication as well as visits to community based activities. Due to the complexity of his multiple impairments (profound dysarthria, significantly impaired hand function, reduced vision and hearing) it is imperative that Peter receive adequate carer support to maintain his connection with every aspect of his life. Consistent with this requirement is that Peter requires regular review of his technological needs in regards to access and ease of use.
Upper limb function: Peter’s upper limb function is significantly impaired by incoordination, weakness, sensory changes and spasticity. Due to his extremely limited hand function he requires assistance with all tasks requiring strength or dexterity including feeding himself and use of a keyboard. He also requires review and provision of equipment to promote and support his independence.
Cardiac function: Peter requires regular cardiac surveillance.
Physical Exertion and Stamina: Peter experiences ongoing fatigue which is related to his condition and impacts on his functional capacity.
Hearing and vision: Most individuals with Friedreich ataxia have an auditory neuropathy which impacts on the capacity to hear, particularly in a noisy environment. Moreover many individuals have visual impairment. Peter is no exception and has a significant hearing and visual impairment. In particular his visual impairment makes it exceedingly difficult to view a computer screen, his main source of communication hence it is imperative he have carer support available to support his communication needs.
Speech and swallowing: Due to the presence of dysphagia he requires careful positioning to be fed in an upright position with no time constraints on how long it takes for the task to be completed
Ongoing medical and allied health review: It is important to note that Friedreich ataxia is progressive therefore Peter’s needs have changed and will continue to change. As such he requires regular, proactive medical and allied health management including regular review of his assistive equipment needs. He currently attends the Friedreich ataxia clinic at Monash Health on at least an annual basis however on occasions he requires more frequent review. Peter requires regular access to neurology and cardiology through the Friedreich ataxia clinic. In addition he requires regular (i.e., every two to four weeks) physiotherapy, occupational therapy, speech pathology and podiatry from specialised community based clinicians able to visit him in the home. Such clinicians will also be able to train the carers who are working with Peter on a daily basis to continue his programme of stretching, strengthening and activity that is critical to maintaining his health and well-being.
Prognosis: Friedreich ataxia is life-shortening. Progression of the neurological and cardiac symptoms associated with the condition renders the affected person dependent in mobility and self-care tasks on average 15 years after diagnosis. Peter is to be commended for his determination to maintain his functional capacity however his condition is steadily progressing and unfortunately his functional capacity continues to decline. Despite this fact he remains determined to maintain his functional capacity, health and well-being however cannot do so without access to supports such as provided through the NDIS.
Peter has Friedreich ataxia which is permanent, life-shortening and for which there is no cure. He will require support under the NDIS for his lifetime. He has a number of significant impairments that reduces his ability to perform daily activities and is dependent on assistance of others for most aspects of daily living.
Peter considers that his extensive complex needs are not being met in his current accommodation situation. He is keen to move back to living in the community with 24 hour care to ensure his ongoing health, well-being and dignity. He will require 24 hour care with at times two carers in attendance. He urgently requires provision of funding to support this endeavour and to this end I would urge the NDIA to consider Peter’s application for the NDIS in the light of his living with this devastating, progressive, neurological condition.”
The last 7 years in this group home has frustrated me, at times beyond the need for life – it has been especially difficult for me, as someone with a severe physical disability who has high support needs.
It is important to emphasise that I am not a person with cognitive, behavioural, or developmental disability. Moreover, as you can probably understand, I do not take kindly to being treated as if I do have these kinds of disabilities. Likewise, I am also sure many people with intellectual disabilities do not take kindly to being treated like a semi-paralysed person who must live in a wheelchair. Such mistreatment is a total disregard of a person’s humanity, a violation of a person’s rights, and shows a complete lack of respect and empathy.
To go further into the standardised and stereotyped processes behind most shared supported residencies – I would like to point out once again how difficult and utterly frustrating it is for residents like me, to live in group home specifically designed to standardise the care of people with high support needs. People with disabilities with high support needs should not be standardised. Let me now highlight a pragmatic and logical example of what is wrong with this process of caring for people with severe disabilities:
“ACE DISABILITY SERVICES – We are here to give independent and fulfilling lives to people with physical, intellectual and multiple disabilities.”
Lovely slogan isn’t it? But then reflect upon the efficiencies that are required in shared supported accommodation like my own. And now look carefully at that phrase: people with physical, intellectual and multiple disabilities. I am not criticizing the ethical intention; I am trying to draw attention to the inner organizational chaos that will result for workers and residents if a facility conflates physical and intellectual disabilities. And who can tell how care for those with ‘multiple disabilities‘ can emerge in the midst of such organizational blurring.
There are many residents, perhaps an overwhelming majority of up to 80%, in supported accommodation with some form of intellectual disability. Therefore it can be expected that in shared supported accommodation like the place where I reside, that a policy of taking on such high demand people will simply result in a standardization of disability care for many service providers. And don’t get me wrong. Such people are also my neighbours and deserve proper care. But by putting all disability together in one facility, even if there are different classifications on paper in a provider’s policy documents, there will be an inevitable drive toward standardized care and abstract efficiency, that may allow the provider to continue its ‘service provision’ rather than actually looking to the individual care of people with disabilities.
Quite seriously, this is what I fear will happen. Without a rediscovery of how residents are genuine members of the community that the service provider is maintaining, a policy will tend to be in favour of standardisation over the appropriately differently structured individual care needed for people with severe disabilities in shared accommodation. I feel this example to be the crux of the problem, and the conflation I have described is very detrimental to my wellbeing.
Please, I need to be acknowledged for my needs, as I am a human too.
Support work in shared supported accommodation is so far removed from one on one support. One on one support provides a more relaxed and individually focused environment, where there are not many on hand time constraints to support workers to listen to my questions and actually understand my needs. Here, I am in control of the management of my own support workers, and they are given the chance to hear beyond my disability and severe speech impediments. I was successful living on my own and having one on one support from 1994-2011; during this period I was more independent and in control of my own life.
However, in my perspective, the shared support accommodation where I have lived for the past 7 years has completely stripped me of my independence and individuality. This is due to the failing of some crucial processes, and allowing the impacts of standardized assumptions because of group and time factors, dictate the provision of supports. A clear example of this that I see every day is that the time needed to effectively understand me and my disability, are not being adequately satisfied.
Thank you to Bruce Wearne for his empathy and understanding in helping me with this piece. And the ‘thank you’s do not end there. Chrissy, my academic support worker in helping me with editing, reading and writing. Also thank you to Peter Cross for his advocacy and to Donna Roberts for her support.