From Struggle Triumph: Real-life Inspiring Tales.
LIVE YOUR LIFE THE WAY YOU WANT
CORY'S SELF-DIRECTING STORY
My name is Donna and I am mother to Corey who is 27 years old. Corey has been diagnosed with Cerebral Palsy. He is also cortically blind, has an intellectual disability, and suffers from epilepsy.
Before I started self-directing I was a little lost in red tape, and Corey and I were very bound by service providers. While we were affiliated with service providers, it was very frustrating most of the time when the service providers couldn’t supply support workers for the hours that were needed. We often had different support workers that would just turn up and not know anything about Corey or his needs. As Corey cannot communicate, I would have to go through all of the information about his needs each time.
Most times the support workers couldn’t or didn’t want to do the things I would want them to do with Corey, like swimming which he loves and which also helps with his muscle pain and contractions. Some of the support workers couldn’t swim or didn’t like the water. Corey also needs constant stretches and physio so I had made a special book to explain the exercises, but none of the support workers ever attempted these.
While we were with service providers, I also never knew how much funding was left or how much we even had to start with, so our experience before self-directing was very rigid and uninspiring. Corey was always upset and had little or no quality of life. In fact, he was just existing!
Then we started self-directing, and things changed. We employed awesome support workers who are now more like family than employees. They love to do what Corey loves and they love to help him with different experiences. Having the right support workers are the key to having a happy experience. Having the same workers coming each day means that they get to know Corey and know what he wants, which is a big relief. Corey now has more of a social life than most of our family. He goes to things such as music therapy, swimming and has lunch twice a week with his friends. Accessing the therapy that Corey needs is now easier and he also gets much more community access, which is giving Corey a much richer and more fulfilling life.
At first I was a little scared of how I would manage, but with the help from Bespoke Lifestyles and all the wonderful staff there, it was even easier than when we were with a service provider. I was worried about staffing but have actually found that it is quite easy to obtain staff, and it is staff that I can pick myself and approve of, not some service provider’s choice.
HELP WHEN WE NEED IT
Tailored Support, Hassle-Free Management
We have been associated with Bespoke Lifestyles since its inception in 2010. We were immediately attracted to self-directed funding for our 33 year daughter Anna, because it meant additional funding through lower administration costs as well as greater control over how these funds would be spent.
Some additional tasks associated with self-directed funding seemed at first a bit daunting, like finding workers for Anna ourselves, conducting regular support worker meetings, supervising workers and paying them. However, with the help of Bespoke Lifestyles to ease us into this at the beginning, now this all seems very natural.
Finding workers has rarely been a problem. In fact they usually find us! Some are friends or siblings of current workers (currently Anna has nine workers) or just someone who knows someone who wants to work as a support worker.
Initially a consultant from Bespoke Lifestyles helped us with staff meetings but now we (my husband and I) confidently conduct bi-monthly dinner meetings which have become a social event at Anna’s unit as well as being an important business event. Anna enjoys having all her workers present. She is encouraged to participate as much as possible and loves being the centre of attention.
Staff supervision is also not difficult as I am in constant contact with each of them either by phone or in person to catch up on how things are going. The lines of communication between us are always open. Staff pays aren’t a problem. My husband enjoys doing spreadsheets and checking invoices against timesheets and reconciling the petty cash book. We have to do a monthly estimate of Anna’s cash requirements and report all the payments on a quarterly basis. Self-directed funding requires a high degree of accountability. However, Bespoke Lifestyles have established guidelines and checklists to assist families in this area. We also feel reassured that if we were to become overwhelmed or if we decided to take a long holiday and were not available to pay the staff, Bespoke Lifestyles would assist us to organise someone to take on this task for us.
Bespoke Lifestyles helps us each year with a financial budget to help us work out what support Anna can afford. With self-directed funding, we have the opportunity to manage our daughter’s funding to the best advantage to give her the best possible life and we are able to modify the funding plan if her circumstances change. For Anna, self-funding has meant she could afford more support which enabled her to move to her own unit last year. This means she is more independent and leads a more normal life in her community.
SOMETHING TO INSPIRE TO
Making My Own Choices
David is a young man of 31, living in Boondall and sustained by family and support workers to have an interesting and challenging life. He has two older sisters and Mum and Dad. Bespoke Lifestyles supports the family to manage his funding and provides ongoing advice and education around family-managed arrangements.
When David left school about 13 years ago, our idea of his future was limited to “special” day programs. David has Autism and very little speech so had little input into the decisions about his future at that time.
In 2005 David discovered Facilitated Communication which enabled him, for the first time, to articulate what he wanted to do with his life. Using FC, he could convey his deepest feelings about self-worth and participating in society. He could then tell us that he found the day programs frustrating as his individual needs could never be met in a big group setting. He didn’t want to spend his time on a bus going to the movies or doing “activities” with a group of people not of his choosing to fill in the day.
“David’s journey to this point has had two large cross roads – one the discovery of FC and the other being able to plan his life and make his own choices with his individual funding.”
We attended conferences and workshops with organisations such as Pave the Way which showed us a future for David we never thought possible. Hearing words like ‘family governance’ and the possibility of David living in his own home was a revelation. We learnt how to have a plan and a vision for David for his future. We applied for funding to support David in this new plan and have been successful in securing some ongoing funding for this purpose.
We started with Bespoke Lifestyles in October 2010 and David is now well supported by six wonderful support workers who all contribute something unique to his life. We have hired these workers ourselves and David is part of this process. The support workers and family have regular meetings to troubleshoot issues and to seek out more interesting pursuits for David.
Each week day has a plan, which of course is subject to weather and other variables as is anyone’s. David enjoys gardening, both at home and at a community garden, attends local gym and a hydrotherapy pool for fun and fitness. He is building up his mowing business on Tuesdays and Fridays. He rides his bike around local bike tracks and enjoys backyard cricket, ten pin bowling and golf. He attends two writers’ groups on a monthly basis which extends his self-expression and monthly he hosts a group of friends at his house for coffee and conversation. David is currently working on a leadership project with the Brotherhood of the Wordless to advocate to service providers what non-verbal people need to achieve a satisfying and productive life. Each facet of his life brings a different mixture of challenges and friendships to be built on in his local area.
There is a rich mixture of work, exercise and creativity in his life – something we all aspire to. He isn’t doing anything just to fill in his days idly, in fact he craves being busy and useful. David has voted in the last few elections and is proud of his status of being a “fully-fledged member of society” – his words.
David is now living in his own home with his house-mate, Dan. This arrangement has been working for just over a year and has enriched David’s life immeasurably. Dan works in Redcliffe and is home in the evenings for dinner and genuine company. They do great things some weekends, like long bike rides, bare foot bowls at a local club and just hanging out. They enjoy $6 steaks at our local footy club on Monday nights with David’s sister Lisa. Dan’s presence has made David feel like a regular guy, and we as a family are confident David is safe and enjoying his life. He recently had a State of Origin night at his home, with both sisters, two little nephews, in fact ten of us all sharing the fun and food in his own home.
SOMETHING TO INSPIRE TO
NATHAN'S STORY
Our son, Nathan is now 21 years of age and due to his significant disability, has been in receipt of substantial formal paid support from the age of 13.
The service provider at the time gave our son and his family great support and provided a person-centred plan created with our help and to our satisfaction. However, unfortunately it did not continue in this way in his adult life. After leaving school he attended a day respite service where his only option was pursuing leisure activities in groups with others with disabilities and his individual interests and skills were not acknowledged or developed. Then we were introduced to the concept of self-direction through a hosting agency and we knew immediately that’s the road we wanted to choose. We were amazed at the difference it could and has made to all our lives. It can only be described as a breath of fresh air.
Nathan is now free to choose the lifestyle he wants and pursues activities that he prefers. He no longer attends day respite, he likes the staff and he is more communicative than he has been in the past. He is beginning to build community networks that will ensure his wellbeing into the future. We, his parents, are very involved in the hiring, training and management of staff and this is our preference. It gives us a real sense of autonomy and the freedom to hire the most appropriate persons for this role. We now manage our son’s lifestyle in a more relaxed and positive way and our own health, wellbeing and family life have improved.
