Pilot project offers choice for people with a disability

An innovative NSW Government pilot project which enables people with a disability and their carers to design their own program of activities is proving a success, Minister for Disability Services Paul Lynch said today.

The two-year pilot started in June 2007 and in its first year has played a decisive role in supporting people with a disability increase their independence.

Mr Lynch said young people with a disability and their family or advocate were being given more choice in the services they received through the Self-Managed Community Participation Project.

Of the 80 packages that are available, Ability Options is delivering 40 of them through $1.2 million in support from the NSW Government.

Mr Lynch today attended a celebration of Ability Options’ program in Sydney.

He said the Self-Managed packages enabled people to choose, direct and control the nature of their support.

“The NSW Government recognises that people should be involved in decisions about their own support, and that this should be customised to individual needs and goals,” Mr Lynch said.

“Young people with a disability are being empowered to achieve their goals and participate as valued and active members of their community,” he said.

Mr Lynch said the model had been well-received. (see attached case studies)

“There has been strong interest in the new packages and positive feedback from young people and their families,” Mr Lynch said.

Ability Options CEO Matt Donnelly said: “A key factor that is contributing to the success of this program is the commitment from people with a disability and their families to make this work.”

“So much has been achieved in a relatively short period of time and we are looking forward to working in partnership with people and their families into the future,” Mr Donnelly said.

Lauren Clifton and her family’s experience in the Self Managed Community Participation Pilot

Written by Parent Kim Clifton

I’d like to share with you our story

Today I would like to tell you the experience my family has shared that has focused on what we could do to improve Lauren’s quality of life. The catalyst to make this change was the opportunity to work in partnership with Ability Options to self-manage her Community Participation Funding.

We first heard about the Ability Options pilot program last year in September through our Department of Ageing, Disability and Home Care (DADHC) caseworker, and a meeting was planned for 17 September to meet with Ulli (from Ability Options) so she could explain how it could all work. At this point we were hearing how it should work but we didn’t believe it could. This period was quite a difficult time for our family, as Lauren has an intellectual disability and her challenges in life became greater when she was diagnosed with schizophrenia as well.

During this time Lauren withdrew from social contact preferring to be alone in her room, sometimes for days at a time. At this point we were willing to try anything.

So we met with Ulli and signed up to this new program, thinking we have to keep on trying.

The first step in the process was that we could choose to establish a “circle of support” or planning circle. The idea behind this is that the service does not see themselves as the expert on your child, but that the people who know and care for her were seen to be the experts.

So on15 October, 2007 we held our first circles meeting to start talking about and thinking about how we could support Lauren to have a better life.

We invited a small group of people who have been our close friends for many years and have watched Lauren grow up – these are the people who care, love and want the best for her.

At this meeting we did start to think more positively. The group was great and we started sharing ideas and despite Lauren’s struggles everyone could see all the great qualities she has, she is a good friend, loving and considerate. As parents this was so important and great to hear. Then we moved onto discussing all the things we thought Lauren might enjoy, swimming, dancing, being around children. But then the next question came: How are we going to make this happen?

Ian and I knew Lauren would not accept just anybody in her current state. We could not invite just anyone to come in and support her. It just would not work. But something amazing happened that surprised Ian and I. Our friends who we had invited to come and plan with us, put up their hands and said they could start supporting Lauren to do things she might enjoy. We accepted the offer and it felt good to be able to offer payment leading us to feel more comfortable asking for support of other friends and acquaintances.

It just made sense, these were the people Lauren felt most comfortable with, they have known her for many years and very importantly they knew how to support her with her dual diagnosis. For the first time we thought this just might work.

We started small, we wanted to take things easy so we started off with our friend Guy taking Lauren to his house to swim with his children, have lunch and sometimes watch a DVD. These outings to our friend’s home led to Lauren being confident enough to attend the local swimming centre. During her visits at the swimming centre Lauren became known to staff and other patrons. This has now offered her the opportunity to work as a volunteer.

Then on another day our friend Karen started taking Lauren to her daughter’s dance studio to study the art of dance and be a dancer. This became her passion – we finally found something that she really loves. She has enjoyed dancing so much she is now enrolled in a private dance studio, being taught by teachers who were not previously known to her. We are now exploring singing and drama lessons and in Lauren’s words: “I’m quite the little performer.”

Lauren loved this, she started to enjoy herself, and we could start to see positive changes in her.

Whereas Lauren previously had just wanted to sit in her bedroom, she now began to look forward to life and what she was doing each

day. Lauren for the first time since the onset of her illness was showing interest in her life, which gave us hope for the future of our whole family.

Before we knew it Christmas was on our doorstep and it was great!. We enjoyed spending time together as a family and life had started to become enjoyable again.

The combination of finding the right medication and accessing Self Managed Community Participation has changed Lauren’s life. It has introduced new people and new experiences into her life and given her control over how she wants to spend her time. During the last 13 months we have seen great changes in Lauren.

During this period we have seen Lauren transform from a person who shunned human contact of any sort to become a young womanwho is always willing to try any new experiences. We as a familyare always looking for new opportunities and people to expand her social network.

Lauren will be attending her first concert without a parent in 2 weeks’ time to see Alicia Keys at Acer Arena and we don’t know who is going to need the Valium – her or us!

Clare Hooper: Ability Options Celebration

Written by Helen Hooper: Parent

In one year our family has moved from a very poor needy situation to a life of joy, activity and learning.

Clare, my daughter, who has a dual disability has now valued physical and social roles as she is an artist in her own right, a cook, a volunteer, office worker, weight watcher, trainer, commuter, a citizen, shopper, TAFE student and valued community member. All of this has been achieved through a very carefully planned self managed program.

How did we do this?

After discovering that we could manage Clare’s life ourselves, the wheels moved very fast. After several meetings with Ulli at Ability Options it was decided that Clare and her family should establish a ‘circle of support’.

The circle was selected by Clare and was made up of her peers, twin sister and close family friends. The people involved had an understanding of Clare’s life to date and a wish to make things a whole lot better.

The group met on neutral territory with Ulli as facilitator and together we began to plan a new beginning for Clare. From a room full of charts highlighting Clare’s interests, needs and goals we extracted key areas to develop.

In a very short period of time Clare was working with an artist once a week producing amazing, vibrant, colorful canvases.

In November 2007 it was decided that a Christmas card should be printed from Clare’s artwork called the “three wise cats”

Along with this exciting venture we held an exhibition of her work at Salmon Galleries where she sold 19 paintings in one hour. What joy – Clare was able to add philanthropy to her list of valued social roles, as money raised went to St Lucy’s school – a school for young disadvantaged children.

We did not stop here. In June this year she won the North Sydney Disability Art Prize. The judges’ comments said it all: “What a joy it was to engage this painting. The colored lines in this work suggest the life and vibrancy of Luna Park. One minute I find myself looking into water, then into structured buildings, then onto a rollercoaster, and there is the artist in the middle of it all.”

Clare has since produced postcards and occasion cards from her art work giving her an understanding of business and recognition.

What a beautiful and rewarding experience this art program has offered; success, fun, new skills, lifetime activity and confidence. Clare has also developed her own flyer placing herself in her local community as a volunteer with a catchy phrase: “Clare the volunteer, Help a local out.”

This led to two supported voluntary jobs; one in real estate and the other in an architect’s office. Not only does this teach her office skills but introduces her to her community where she is gaining confidence, a feeling of security and relationships.

Our aim is to have Clare living independently, so once a week she enjoys a day at home menu planning, shopping, cooking and the very essential cleaning up. She is learning to buy healthy foods that are easy to prepare. Meals are cooked in the microwave and in oven bags without tasting like “bag food”. Also with complicated fine motor skills she has learnt how to overcome the difficulty of food preparation. Imagine after her long restricted journey, being able to produce with pride a meal for the whole family.

The positive changes in Clare over this very short period of time have also encouraged her to think about herself, her image and appearance. Her medical condition calls for a lot of medication which in turn caused massive weight gain. The support circle encouraged Clare to attend Weight Watchers and work with a personal trainer, a local fireman. She has lost 20kg and is still reducing. She is also breaking speed records; the bay in 59 minutes!

Clare is embracing tertiary education just like her peers and it is hoped she will pursue further education, not under the disability banner, but as a student who has ability and a need for further education in her chosen interest.

In fact Clare’s art success has inspired the International School of Colour and Design to run a new series of art programs under the banner of inclusive art. The college says: “That art and design is aligned to our vision that art and design and the creative process should be accessible to everyone. The program will work along side business and industry professionals providing possible new pathways for the participants.

With this wonderful confidence growing, Clare took on the role of volunteer during World Youth Day, with the distinguished title of ‘Crowd Marshall”!

As you can hear, our journey is impressive and successful. Being Self Managed has allowed us the flexibility to make beneficial changes on a daily or weekly basis always improving the possibilities for not only now but in the future.

Our success must filter through to other families as this program is a triumph.

As Winston Churchill said:-

“Destiny is not a matter of chance, it is a matter of choice, it is not a thing to be waited for, it is a thing to be achieved.”