Silencing soft targets

By Alexandra Hurley in conversation with Vicki Wilkinson | 31 Jul 14
“I call on the Attorney General to strongly reconsider the need for a dedicated Disability Discrimination Commissioner … We have a right to be seen and heard and you are taking this away.”
Right Now’s Alexandra Hurley spoke with Vicki Wilkinson, a mother of two who until recently had been forced to live in a nursing home.

Vicki Wilkinson is an ambassador for the Summer Foundation, and shares her experiences in an effort to raise awareness and create change for young disabled people forced to live in nursing homes. The Summer Foundation work to resolve the issue of young people with disability being forced to live in nursing homes due to a lack of alternatives. Every year, 70 young people enter aged care nursing homes in Victoria alone, where the average age of residents is 84.

The World Health Organization states that disability is the interaction between individuals with a “health condition” (e.g. Cerebral Palsy, Down Syndrome and depression) and “personal and environmental factors” (e.g. negative attitudes, inaccessible transportation and public buildings, and limited social supports). The societal and cultural factors determine the individual’s ability to live a full and engaged life. 

Although the Abbott Government has promised to continue with the National Disability Insurance Scheme (NDIS), this will be without a National Disability Commissioner. On 30 June funding was cut and the role of Discrimination Commissioner, previously filled by Graeme Innes, was downgraded to a part-time position. It has fallen to Age Discrimination Commissioner Susan Ryan to fulfil both roles.

Right Now: How will the lack of a Disability Commissioner affect the implementation of the NDIS? 

Vicki Wilkinson: This is a severe blow for all Australians to the commencement of a revolutionary new approach to assisting people with disability, in particular, the promise to assist young people in nursing homes or at risk of being admitted to a nursing home, the opportunity to live and access the community. The Disability Commissioner would have played a major role in the implementation phase in terms of being able to represent the needs of those requiring representation at a national level and being able to affect change to ensure care is consistent across the country.

What are the main issues for people with disabilities that you feel need representation and advocacy? 

The decision to place young people in nursing homes under the Aged Care Commissioner’s portfolio along with those who have chronic illness resulting in severe disability and those in aged care with disability. Having to approach the local Regional Information Advocacy Council (RIAC) for representation about the 52-day rule (of being able to stay away from the nursing home at night) discriminates against the rights of young people having a relationship with their husbands or friends and family. They are not able to stay at home unless they are almost dying.

Vicki, in your blog you mentioned the distinction between being discriminated against because of your age and a disability. Could you explain this difference?

Discrimination happens at a number of levels. The first being the lack of autonomy, i.e. being dumped in a nursing home with no preparation, no planning documents (including medication lists), no one knowing when you are going to arrive. As a young person, this is totally unacceptable and constitutes unintended discrimination.

We are marginalised and left to our own devices with no access to internet or the outside world. We are at the mercy of the nursing home’s ethics, policies and procedures. They are only as good as the management, and I question whether there is adequate staff to assist in making the nursing home experience a positive and fulfilling one.

[There is a lack of autonomy] you have to push the buzzer and ask nurses or carers to open things like your curtains, turn the television and bed light on, pick up magazines from beside the bed and pick up the bed buzzer and bed control from wherever they were left from staff attending to me last. Sometimes these items would fall on the floor and so I was unable to contact staff, which left me in a predicament; unable to get help.

You also motioned that “young people in nursing homes is about preserving life, engaging life”. What helps you to feel healthy and engaged with life?

Having the same access and options in our community that everyone else takes for granted. Ours just takes more planning, building bridges to activities or points of interest to help build our re-integration; simple access to medical and allied health services with our input so we can feel like we can have a say in our own treatment. By far the most important of all is debriefing from intuitionalism, and becoming acquainted with the changes in the world we have “lost” and this helps alleviate the displacement and isolation that has shaped our time in a nursing home.

Vicki, you mentioned you have two daughters. How has living in nursing home affected your relationships with your family?

From my daughters’ points of view, they felt that when I was in the nursing home I gave them more quality of time, even though I saw them five to six times per year. They believe that staff did all of my care so I was free to be the real me. They recoiled when they would walk through the lounge room and see 20-odd aged residents lying in the blue Princess Mary chairs fully reclined, covered by blankets with barely discernible movements, mouths gaping open and feet protruding, all parked in front of the TV and senseless sound pouring out from the set. They discovered alternate routes to get to my room.

From my perspective, I felt my children thought I was safe in the nursing home. They would visit and then leave me there, door closing and once again I was alone. It was like the beauty and joy I had with them was sucked out of the room – when they leave you are desolate again, packaged and boxed up. My relationships suffered and my children have been through the stage where everything I did said or shared was wrong and this has caused me much distress. Part of it is that we all miss each other. It becomes a role reversal, the girls as mum, and me as daughter. Resuming life in the community has been fraught with hourly and daily challenges, but this has motivated me to seek out my children more for friendship, love and relationships. The relationship is now much better as I no longer feel so displaced and irrelevant to life, society and family.

My mum and twin sister were the primary support team on a daily basis until mum died unexpectedly and then my twin sister in 2013. This gutted me. These two people would advocate for me to staff, pray with and for me and they knew me so well, they both loved me and I loved them too. They both felt bad I was in a nursing home and felt responsible. My life dropped out like a meteorite flattening my room, my life and everything in between. Shortly after this, another couple used to visit me regularly, but then they died, leaving with me nothing. Support team over. Period. My friends in the nursing home were also “going down like flies” – that is dying – and this was just too much.

You mentioned on your “Digital Story” that when you were first faced with your disability you felt “ignorant” and you faced many closed doors. How could this be avoided for someone going though the same situation? What helps you feel supported?

This could be avoided if there were more suitable options for people like myself. For instance, don’t just “duck shove” us into aged care just so it solves a problem for the hospital and meets government discharge timelines. Exceeding your stay in rehab beyond five weeks causes a huge black mark on the hospital and ward, so at all costs, staff are forced to move you along so that the “pie charts” remain right. When I consider that I was a statistic, that had to be moved on regardless, it demonstrated to me that it was all about money.

Grief counselling, engaging us and our support team (usually family) with written material, options counselling, and discharge planning are all positive and something helpful we can cling to. As well as other’s stories of facing similar situations, who have successfully navigated going into nursing homes from rehab, and even be discharged back in the community. Proper discharge planning would go a long way to helping us.

There is a saying, “all things are possible to them, who believe”.

You mentioned that you are hoping to attend a conference in Sydney at the end of August, but the options you have of either buying two or three seats on a plane, or hiring a taxi for three to four days could cost you about $3000, or a third of your yearly disability support pension. Is this a common problem? 

This is a common problem for anyone who is outside the ordinary, in terms of having a disability. Most companies just go the bare minimum to cover what legislation requires for such things as wheelchair size, leaving no room for the unexpected. I have had VLine tell me they are not obliged to find alternative means of transport for me, because my wheelchair exceeds the 1300mm length of wheelchairs stated in the Disability Legislation. Similarly, I attended a production of My Fair Lady recently, and having booked tickets prior and explained my wheelchair situation at length, to my dismay, when I got to the venue and was about to be ushered in, the attendant announced that, “due to my size that I would need to position my wheelchair parallel to the stage and to turn my head to the right side to see the production”. My prompt answer was: “No way, please put me where I can look straight onto the stage as I have a neck issue.” With that, I was taken to a spot that didn’t fit my size of wheelchair, so I was told to move backwards onto the feet behind me and in doing so, blocked the walkway, with my feet touching the front stage where the band pit was located. So yes, it is common!

What other structural or societal problems do you feel affect your ability to life a full and engaged life? 

Things that affect my ability to live a full and engaged life are little things but huge structural challenges to me including things such as:

When I am shopping, some stores only have steps to enter the premises and when asking for a ramp, being told: “It is covered in stuff and you don’t really need anything from here, do you?”

Doorways and footpaths that are too narrow in public, commercial and private sectors. New buildings look fabulous on the outside and very trendy, however, when trying to access office areas or suites (even doctors) the doors go all the way to the roof and it looks very spacious as do the corridors. That is all but lost on me as my size wheelchair, which cannot be modified anymore or made smaller because of the model. When trying to access a doctor’s office, I removed paint on the doors, as they were slightly less than the standard 800mm wide frame.

On a societal level, public servants and politicians don’t really have an appreciation for what it’s like for a young person living in a nursing home. Young people with high and complex needs bring in the most money for nursing homes, with the least output, thus making a huge profit. No meals are geared for young people; nor flexibility in having a wash – it’s morning and it’s a rigid routine; no programs to stimulate us to stay acquainted with our outside life, let alone learn new skills and interests; no access to internet (we are forced to pay for these services). Most young people rarely have visitors come to see them after a year, so they really adjust to living in a microcosm community designed for old people. However for us young people, being institutionalised makes you lose all concept of your previous life as a sibling, friend, aunty, uncle, parent, partner, lover, worker, or school attendee. When an exit opportunity occurs – it opens your eyes and scares you all at the same time.

Discharge planning is one of the key components for successful reintegration. There is a lack of reintegration planning when discharged from an institution like a nursing home, back into the community to not only survive, but thrive!

More information
Vicki’s Digital Story and Vicki’s blog.
The Summer Foundation is developing new models of housing to demonstrate alternative, integrated housing for young people with disability. Along with this they conduct research to influence policy change and support people with disability to share their stories with the Australian community to highlight the importance of our work and keep the issue on the political agenda.