History of Disability in South Australia

Leveda is a not for profit non-government community support service for individuals with a disability and complex support needs.

We have two very distinct consumer groups:
• Individuals with severe and multiple disabilities. Most of who have severe cerebral palsy. This group make up approximately 70% of the client group,
• The remaining 30% of clients are individuals with an intellectual disability and support needs related to behaviour.

Leveda’s main mode of support is group homes with 2-5 people sharing a home together with staff support and with a smaller component of the service being intensive in-home support and respite support.

How did Leveda Begin?
Leveda was formed as part of the closure of Ru Rua Nursing Home; an institution for almost 100 children and young people with severe and multiple disabilities. Ru Rua was quoted in a Government report as being the shame of SA and housed the most disadvantaged and disabled in our community.

Ru Rua was overcrowded; individuals slept in cots all lined up and if you have ever seen the movie “Annie’s Coming Out” it has startling similarities to Ru Rua. As people moved from Ru Rua to group homes in the north and northeastern suburbs of Adelaide, families became very involved in both the establishment of the services and their overall development. This resulted in a break away from Government and the formation of Leveda. Leveda has more than doubled in size since those early days 17 years ago and now supports 70 individuals.

Over the years some of the people supported by Leveda have become increasingly medically fragile and we have adapted our services to the changing needs of clients. Rebecca’s story is an example of one of the ways that we have changed our services to meet the needs of clients.

By Denice Wharldall (CEO)

Rebecca’s story as told by her mum
Rebecca has very severe disabilities, which have threatened her life, and involved decision making that was difficult and came with risks.

Rebecca is above all a social person who enjoys company and being involved in all that is happening. She loves soap operas and in particular “Home and Away” and “The Bold and the Beautiful” and you can only engage her in conversation during ad breaks when these shows are on!

Rebecca is able to communicate by rolling her eyes up for yes and blinking for no. She likes to look good, have her nails done and dress in the latest fashion. She likes to have young support workers because they know the fashions and the right music to listen to.

She likes discos and enjoys watching the tennis and Australian Rules Football team the Crows. Her father is trying to convince Rebecca to follow Port Power but this has not been successful.

Rebecca attends a day service called the Community Access Service, which she gets great pleasure from as she has the opportunity for a wider circle of friends and activities.

One thing that gives Rebecca greatest pleasure is being an aunty and she has a particular bond with her nephews Jackson and Nathan. When Jackson was a baby he would have an afternoon nap on Rebecca’s lap and we would place the two of them in front of the mirror so Rebecca could see him properly and they would snuggle up together.

Please do not think of Rebecca as someone to be pitied but a strong vibrant person.

Rebecca is the middle of our 3 daughters and acquired her disability aged 2 when her older sister was 5 and her younger sister was 6 weeks old. At the time we were living in Alice Springs and had no network or supports. There were no services in Alice Springs and respite was at the local hospital, which we never used. Another mum and I established a playgroup and we met once a fortnight with about ten mums attending.

At one time we went to Adelaide for 6 weeks for Rebecca to be assessed at the Spastic Centre and she was given a buggy and I was taught how to exercise her and assist her with her meals.

When Rebecca was four we moved to Adelaide for services and Rebecca started to attend Nursery at Spastic Centre one or two days a week.

From the word go Rebecca had trouble swallowing and it was a constant battle to feed her and drinks were a particular problem. I followed all the professional advice to no avail and by the time you finished one meal it was time to start again with the next.

We had some respite at the Nursing Home at Spastic Centres and the Matron, Maureen, was so very kind ringing us to offer us respite and a kind word when she could. I do not know how we would have survived.

Life was tough but it was about to get a lot tougher when I was called into the Spastic Centre’s Doctor’s office and told that basically Rebecca had no potential, would not be able to go school as she could not be educated and that she would be much better off at Ru Rua Nursing Home and he would arrange an assessment. If we did not accept Ru Rua we would be left with no support. I know things have changed but to this day I find it difficult to forgive the Spastic Centre for abandoning Rebecca. Rebecca was assessed at Ru Rua and we were offered a spot and told that if we did not take it another one was unlikely to come. Rebecca left home aged 9 and we thought that she would have better care and attention than we could possibly provide. I was struggling with the meals, the postural drainage and felt like a failure.

Ru Rua was not a good place and visiting was difficult. It was heart wrenching to walk away and leave Rebecca. We visited weekly as a family and I visited midweek. Rebecca’s eating and drinking continued to deteriorate and we avoided visiting at meal times. Staff, told me on the quiet, that Rebecca was vomiting blood. I demanded she be taken to hospital and see a specialist and it was found that Rebecca had a badly ulcerated oesophagus and required urgent surgery and had a gastrostomy. There were some tense times with such invasive surgery but Rebecca pulled through and her health picked up and she put on weight. It is hard to believe now but at that time gastrostomies were rare and everyone was tentative about managing Rebecca’s nutrition.

All of this happened just as Rebecca was about to move out of Ru Rua into a group home with 3 other people. She moved close to our family home and started attending school, she was aged 14. It was wonderful to be able see a lot more of Rebecca and have her part of our family again. Rebecca shared a ward with over 25 people nearly all in cots; to finally have her own room was a joy. Having her own belongings and having a choice to listening to TV or music when she wants to. We must never forget the damage that institutions do to people with disabilities, they drive away their families and dehumanise people.

Life went along and had the usual ups and downs but Rebecca was gradually becoming quiet, lacking energy and needing more rests. In 2003 she deteriorated to a point where she needed to be hospitalised on several occasions as she was having trouble breathing and we had noticed she had a bluish tinge. I remember the difference the oxygen made to Rebecca’s comfort and she kept looking at us as if to indicate that she needed it all the time. The hospital told us it was part of her disability and refused to discharge Rebecca with oxygen. I was beside myself and needed to find a specialist who could give us a clear picture of why this was happening. I was given the name of a specialist that another Leveda client was seeing and a referral was arranged.

Things started to happen then and Rebecca got the much needed oxygen and alarmingly an arterial blood test showed oxygen levels of 49%. Tests showed that due to all her spasms her jawbone had straightened.

We were given 3 options:
• Do nothing and this was likely to result in an emergency tracheotomy with Rebecca continuing to waste away with her body shutting down
• Have major surgery to reconstruct the jaw
• Have a planned tracheotomy, with this option being the advised one by specialist

We had many family meetings. Discussed the pros and cons and talked to Rebecca endlessly. In fact when I asked her if she wanted to stop talking about it she indicated yes. We met another family whose son had a tracheostomy and this was most helpful and assisted Rebecca to understand what was happening as she could see what we had been talking to her about. We took the specialist’s advice and a new journey began.

In hospital I promised Rebecca I would not leave her side and would be there when she went to sleep and when she was in recovery. This was not to be and I was not allowed to be with Rebecca in recovery and I knew Rebecca would be frightened and distressed if she woke and I was not there. I did get summoned into recovery where I found her bed was surrounded by people with panicked looks on their faces. Rebecca was very distressed; she was being bagged as she was having difficulty breathing. I spoke to Rebecca and reminded her to breath slowly through her chest and try and relax as we had discussed as she did this she started to breathe for herself and we all breathed a sigh of relieve.

Rebecca recovered well and returned home. One big down side is that Rebecca developed epilepsy after the surgery, a condition she did not have previously. It was a big learning experience for everyone and there was much fear and anxiety from staff. They were frightened of hurting Rebecca and she was treated with kid gloves and for this to work appropriate systems needed to be in place. Having a Registered experienced nurse to support and train staff is critical. Our District Nurse Joe has been invaluable and very supportive.

What have we learned from this experience?
• Always insist on having access to the best specialist. Rebecca has severe disabilities and needs the best. Time and time again she has been offered nothing. The number of times you hear “it’s her disability you have to accept this”. When we finally had access to the best they presented us with all the options and did not limit them due to her disability. Although there are many good health professionals there still remains considerable prejudice in our health system. My other two children would not have left hospital that day without oxygen and a referral to a specialist.
• I very much regret not standing my ground regarding being there when Rebecca was in recovery. I believe she may well have died without me being called in. There needs to be special provision for special circumstances.
• Having staff with the skills to support Rebecca’s special needs is important and also staff that Rebecca feels comfortable with and can trust. Leveda sometimes struggles to find consistent staff. It is important for families to work collaboratively with service providers it is a partnership.
• When making decisions about such very invasive surgery think about the outcome you want to achieve and if this is going to achieve it. We wanted Rebecca to start enjoying life again and doing the things she enjoyed; it wasn’t about keeping her alive at all costs. Weigh up the advantages and disadvantages and talk to people. We found meeting another person who had a tracheostomy and their family extremely valuable and I thank them for sharing their time and answering our many questions.

We have the old Rebecca back and in fact her general health is better than it has been in years.

By Wendy Cogan

The service provider’s view
Support staff at Leveda also had many concerns about Rebecca’s welfare and like Rebecca’s family felt that the health system was letting Rebecca down. Support Workers are often listened to less than families and easily dismissed. At least Leveda knew the name of a good specialist that other clients see.

Everyone was very nervous about Rebecca having a tracheotomy and concerned that we may not be able to manage, however watching Rebecca deteriorate to the point that she was spending most of her time in bed and not interested in anything was distressing for everyone.

The first thing that needed to happen was that the whole area of tracheotomies needed to be demystified and the fears allayed. This was done by the Registered Nurse who supports Leveda clients and trains staff running many sessions on tracheotomies even for staff that would not be supporting Rebecca directly. For example every Leveda team leader did the training. The training involved what is a tracheotomy, what do they look like and feeling and touching the equipment. This was very valuable. The staff that supported Rebecca and five additional Leveda staff went on to have more intense training.

After Rebecca had a tracheotomy staff visited the hospital daily and were introduced to the new procedure. Rebecca’s mum was a wealth of information as she had not left Rebecca’s side since surgery and had learnt from the health professionals and Wendy remains the expert to this day. It is important to acknowledge the skills of others.

When Rebecca returned home the Registered Nurse spent a great deal of time at the service supporting and training staff and this is critical. Rebecca and staff need support and guidance. Wendy also makes herself available for support and we are all part of a team with Wendy being part of that team. In the beginning staff treated Rebecca with kid gloves and were terrified. Of course over time this has changed and the management is all part of the routine and not perceived as so special. The ongoing availability of a Health Professional for support is crucial for Rebecca’s safety and comfort and for Leveda to maintain their workforce. We do not need nurses to support Rebecca 24 hours a day but the support staff need a skilled and experienced Nurse for advice and guidance.

There have been times when Leveda has struggled to provide a consistent workforce but the reasons for this have not been related to Rebecca’s needs but other organisational issues. Rebecca’s needs have dictated that staff who support her need to have good attention to detail and not cut corners and be very focused and some staff needed to shift locations because they struggled with this. In many instances they were very good staff but there skills were better used elsewhere.

There have been staffing implications for Leveda, Rebecca does not get one to one support whilst at home but always needs someone available instantly. One to one support is provided outside of the home setting. The support time to meet Rebecca’s physical needs has not changed as her chest care now takes significantly less time. If Leveda was unable to provide a skilled staff member to meet Rebecca’s needs we would need to employ a Registered Nurse to fill a shift and this has not occurred so far.

Supporting only one person with a tracheostomy has implications for maintaining a skilled workforce, as you need to have many staff skilled to cover all the contingencies. Having a lot of people that need to work at the service to keep their skills maintained has its down side. We support many people who have nutrition via a gastrostomy so keeping a flexible workforce to meet this need is not an issue.

I have never heard anyone say we should not be doing this or this is not my job, everyone believes that our role is to support individuals to live and be part of the community. When you know how unwell Rebecca was and she did not have the energy to smile to now see her back having fun and participating in life it has been a road worth travelling.

By Denice Wharldall (CEO)