On Monday 30^TH April 2012, across each State of Australia, people with disabilities, their families and supporters gathered in their cities to rally for the development of the National Disability Insurance Scheme

Not since the 1980’s has there been such a gathering of people with disabilities, their families and supporters in support of such a reform.  This major reform will improve the way people receive funding for their disability support needs.  “Making It Real” was the theme of this rally.  There were a number of speakers and the whole rally was competently compared by Stella Young.

It was a significant day because there was also a show of bipartisan support for this reform.  Let’s hope this support continues til the establishment of the NDIS in 2012 –  2013.  It was also a day of celebration as you can see from the video clip.

Prime Minister Julia Gillard announced from the Sydney rally that one of her key Budget announcements will be to bring the start of the scheme forward by one year.  People with a significant and permanent disability will be among the first to benefit.

Ms Gillard said a trial would start in four locations around the country with the sites to be decided in consultation with the States. It will double to 20,000 people in 2014. A number of Committees have been established to oversee the development and establishment of the NDIS.

Let’s hope that with this new system of distribution of funding that all people with disabilities will be treated equally and with dignity and we all receive the disability supports needed to live a full, enjoyable and inclusive life.

Did you attend a rally in your State?  Did you come away feeling positive about the NDIS?

If it means using local facilities in the community like shops, libraries and gyms then I’m included. But to me, it means having the spontaneity of being able to go out, meet, chat to and be with other people.

Recently, I attended a Workshop called Belonging in the Community by Bob Jackson.

Bob’s definition of “community inclusion” is an ordinary life of being involved in activities and relationships with other valued citizens in ordinary physical and social settings. Given this definition, we need to consider what the vision is of an ordinary life for a person with a disability, given their past expectations and life experience. Will they be able to develop a vision outside the services they have been involved in?

I was able to do this. I remember when I left the environment of a sheltered workshop to attend Melbourne University. I had prearranged all the disability supports I would need, for example, library assistance, note-takers and assistance to get drinks and meals in a café. I was in control of how I spent my time rather than being told what to do. Knowing I had those disability supports in place when I needed them made me feel very included in the university community. I felt included because my support needs were being met and I was able to mix with other students and maintain my independence.

Bob then proposed a Different World View that “community” is built on two central foundations: Relationships and Contribution. The inclusion of people with disabilities can bring out attributes in others such as taking time, slowing down, listening, consideration of the needs of another and empathy. These are essential attributes for our society. This also means that people with disabilities can be major contributors to the strength of our society through their inclusion.

There are several academic definitions which all include terms such as social inclusion, community inclusion, social connectedness, normalisation, social integration and social citizenship. All these are terms that relate to the importance of the links between the individual members of our society and the role of each person as a member of this group.

I could keep looking for different definitions but the question for me is – how do you know when you are included? For me, I have days when I feel totally included getting on with life with people I know and love and doing activities with them and having a sense of belonging and acceptance.

Then I have days when I think I’m not sure what inclusion is and who is responsible for it?

These are days when I have nothing planned and end up staying home. On such days I sometimes wonder whether I should just take the ”bull by the horns” and go out and hope I can get assistance with a meal or with other things I need to do. Being reliant on disability supports can deflate the ability to be spontaneous and able to meet people in the community. But then I could get on with life in the community and hope that I can find people who will give me assistance when I need it.

Going back to Bob’s definition, this should bring out the best and most caring attributes of society. But on one level, this puts me in a vulnerable, tentative and unsure position. It also impacts on my pride as an independent person and this is why, to some extent, I prefer to have my disability support with me.

By independent I mean I am showing responsibility for my support needs and not being faced with the uncertainty and “fear” on peoples’ faces when I ask them for some assistance. For me an indication of real inclusion will be when strangers don’t have a look of uncertainty or fear when I approach them and I have a sense of belonging all the time.

So do people with disabilities need to change our ways to conform to society to “fit in” as some academics have us believe? Should the “ordinary person in the street” take some responsibility to change their ways to create a more inclusive society?

So what is inclusion for you?

While I was planning my funding for my support needs, I was told I was unlikely to receive any extra funding. Therefore people with disabilities now need to become more responsible and discerning around how we use our funding so we have enough funding to have the disability support we need to be able to do what we want. This could create a dilemma for some people with disabilities when they have to choose between doing some personal care or household tasks in order to have a social life. It’s a pity that at a time when we are told human rights should play an important part in our lives, we are still having to juggle our funding to be able to enjoy a social life!

I use the majority of my disability supports for necessary tasks like personal care, having meals and doing household tasks. I try to find some support hours to do some tasks like shopping, medical appointments and going out to dinner with friends. When I’m doing these tasks my disability support needs do not disappear. For example, when I go shopping, I prefer to take a support worker with me to take certain items off the shelf, rather than me accidently knocking other items off the shelf to get the item I want (which is great fun!), or being at a medical appointment and having the assistance of a worker to remove necessary clothing in a timely manner rather than me having to struggle and taking a longer time to do it.

The issue for me and many other people with disabilities is that our disability support needs do not disappear when we leave our house. We need our support workers for certain tasks to have a more active life within the community. At the moment I am constantly looking for ways to “save” funding to be able to do more social activities with the assistance of a support worker, for example, to have a meal at the local pub or start exercising at my local gym.

However I do not need the assistance of a support worker for all my social activities when I know and am comfortable enough to ask the people I’m with for the necessary assistance I need. But this is not always the case and for my own satisfaction or pride I prefer to have a support worker with me to assist me.

Lately, I have been researching services which will give me more value for my support dollar which will give me more support hours to have more of a social life, I am currently in the process of moving some of my support funding to Independence Australia, a service I wrote about in a previous post.(I hope there are other services which assist us to make the most of our funding) I have worked out that by using this service to meet some of my support needs at a lower rate, I will gain extra support hours for a more social life.
We need to find ways to be able to have the disability support we need for a more social and inclusive life.
As I said before, at a time when human rights play an important role in our lives, shouldn’t we be able to enjoy a social life in the community without worry about if we have enough funding to do so?
How do we do this?
Should we just rely on services to do this?
What are some of the ways you juggle your funding to have a social life?

We need to become more knowledgeable and mindful of how to use our funding efficiently. We need to look around for services which encourage flexibility, choice and value for money. We must look for services which have introduced innovative ways which will assist us to make the most of our ISP funding.

One innovative way could be a Host Employer arrangement. Basically this is a written agreement where an organisation works with an apprentice or trainee employed by a group training organisation. This type of arrangement has been adopted by the disability sector which enables people with disabilities and their families to manage their disability support workforce as Host Employers. They will take on some of the responsibilities around employing and managing their own support workers.

For me, there are two attractions to a Host Employers arrangement.

First, it enables people with disabilities and their families to be involved in the recruitment and selection process, including interviews for their support workers. People with disabilities also become responsible for the day-to-day management of the trainee including assisting in performance reviews, directing on-the-job training, and service co-ordination and rostering.

Second, there are two ways to make the most of your funding. As the person with disability will be working with a trainee, the base rate will be $26.06 per hour. The minimum hours a trainee can be rostered is six hours per week. The benefit to people with disabilities is a lower hourly rate, which means spending less on hourly supports, leaving more funding to buy more disability supports.

Alternatively a person with a disability can continue to pay the top hourly rate and roster the trainee for 6 hours per week. On a 13 week commitment the person with disability can receive a $4000 Government incentive reimbursement to be spent at the person’s discretion, perhaps on more support hours or needed equipment.

An example of this service is Independence Australia which has a Group Training Organisation. In the coming weeks, I will be looking for other services or arrangements which will assist me to make the most of my Package.

If you know of any such services, please let us know about the service and how it can help us make the most of our Individual Support Packages.

Have you had any experience at being a Host Employer? Was it a good experience? Was there anything that made it difficult or negative?

My night at the Australian Open started out really spectacularly. My friend and I enjoyed 2 great matches and had a great night. After the matches were over, we said goodbye and I waited outside for my booked taxi.

As I was waiting, two women approached me. It was obvious that they had had a few drinks and were very merry. “Can we help you?” they asked. Using my Lightwriter, I replied, “No, I’m fine. I’m just waiting for my booked taxi to pick me up.” “But where’s your support worker?” they asked. “Anyway we’re support workers and we’ll help you. We can call you a taxi.” I replied, “No, my taxi is booked and will be here soon. I really don’t need any help from you, thanks.” “But your support worker has left you, and we can help you.” “No, I’m here by myself, waiting for my taxi and don’t need your help. Bye.”

At this point, I was getting irritated, so I started to move. But they followed, asking, “Shouldn’t you wait for your support worker?” After 45 minutes of this, fortunately my taxi arrived. As I proceeded to get into my taxi via the ramp, I looked up and these two women had jumped in the back seat. I said, “What are you doing, you can’t come with me, I don’t know you. Please get out.” At this point, my driver was a little confused, because on previous nights, I had had friends with me so he assumed these women were with me. I then had to tell him that I didn’t know these women and didn’t want them to come with me. They then slowly proceeded to get out of the taxi, still protesting they were there to help me.

As I said earlier, this started me thinking about the community’s perception of people with disabilities and their support workers.
Do people with disabilities, who need assistance with some tasks, lose their identity to be an independent and active person in the community? Does the need for some support with some tasks take away our ability to be seen as capable of looking after ourselves when we clearly can?

I know I am reliant on my disability support workers for some essential daily tasks which I accept. However, I am also capable of going out with friends or on my own. I would also like to think that if I need assistance with little queries or tasks I am able to ask shop assistants or customer service or perhaps approachable strangers, without being confronted with the question, “Where is your disability support worker?”

Have you had any experiences like this? What were they”

Why do you think this perception exists?

With Self Directed Approaches, more people with disabilities will be out and about with their support worker or a friend. What can people with disabilities do to change this perception that the person with them is solely there for their assistance and not for friendship?

This year, I will continue to look at services which are assisting people with disabilities to make the most of their Individual Support Packages. If you have used a service which has been helpful and innovative in working out how to effectively use your Individual Support Package, please let us know.

I recently spoke with the Manager, Deb Rouget, of Personalised Lifestyle Assistance (“PLA”). This service was established with the purpose of working with people with disabilities and their families to work out “their passions, their abilities, their interests; what they want and didn’t want to do with their lives and how they were going to do this and what resources they would need.”

This service started from a small program to plan and work with people with disabilities around what they wanted to do with their lives – what supports / resources they needed to achieve what they wanted in their lives. This became the “One to One project.

The program then received further funding to set up a service now known as Personalised Lifestyle Assistance.

PLA’s Guiding Principles

PLA has no standard way of working with people. Workers work with people with disabilities and the families to ensure their plans are worked out individually. Plans must be completed in agreement with the person to enhance their involvement in the community. There is no set way of developing a plan because each person is unique.

They work on the idea that not all a person’s needs will be met with ISP funding. So they need to look for other resources and other ways of doing things. They look at how other family members achieved goals and try not to rely solely on paid workers but bring in other people to support a person

Deb explained that people needed to be inspired. People needed to see what was possible because if you don’t know what’s possible, you end up doing the same things. . Goals can range from a large goal being “moving out of my parents’ home” to create “friends to support me when mum and dad die”.

PLA dos this through their inspirational and educational /program., This consists of conferences, family retreats; Family Leadership programs and Workshops

Once inspired, people need assistance to explore what they want to do. PLA offer services to assist people to work out what they want to do with their lives.

Are you able to turn over during the night to get comfortable or get up to get a glass of water?

With the introduction of Self-directed approaches, people with disabilities are now looking for new types of services which provide flexible support to fit in with their lifestyles. In the last couple of years, a number of services have been introduced which take into account the right of people with disabilities to have more control of their lives.

One example of this is Nightlife Disability Services, which operates in the Southern Region, from St. Kilda to Frankston thereabouts. This service employs Support Workers who assist people with disabilities in their home after a night out or if they need assistance for small tasks during the night.

Recently I spoke to Delia Fisher and Dean Richards, the co-founders of the Nightlife Service. Nightlife is very unique in its philosophy and its delivery of services. Nightlife is a consumer driven organisation to ensure that the service remains true to its intent.    

For example a person with a disability can now go out to a show, party or sporting event, without having to worry about getting home at a certain time to receive the assistance they require. They can call Nightlife and request a Support Worker to meet them at their home within a time acceptable to both.

What Nightlife Services Do Not Do

However, the role of the Support Worker is not to accompany people out to events. Worker’s roles are only to assist people with disabilities when they return home from an outing at night.

Membership

To become a Nightlife member and be able to use this service, a person with a disability needs to have an Individual Support Package and live in the southern region.

Principles of the service

Both Delia and Dean continually expressed the importance of the service being managed by people with disabilities. This plus the nature of the service, has been empowered by people with disabilities to regain control of their lives especially in the evenings.  People with disabilities can now go out in the evenings and know they can return home at any time and have the assistance they require.

Developing other services

Nightlife only operates in the southern region. Dean suggested that if people with disabilities in other regions, were interested in setting up a similar service in their region, Delia and Dean would be happy to assist them.

Nightlife’s website is; www.nightlife.org.au if you are interested in finding more about their services.

I would like to wish everyone a very Merry Christmas and Happy New Year.

 The main presenters at this forum were;

• Bruce Uditsky, Chief Executive Officer of theAlbertaAssociation for Community Living.  He has been involved in the implementation of self-directed funding in Alberta, Canada by being involved in the development of government policies, community resources and developing processes to evaluate and safeguard the implementation of self directed approaches
• Anne Hughson is the Director and Associate Professor, Community Rehabilitation and Disability Studies, Department of Community Health Department, Faculty of Science. 
• Families who talked about how they have used self-directed funding to change the lives of their sons/daughters by assisting them to follow their dreams and have the life they want. 

 A summary of the forum presentations is below.  I would like to concentrate and extrapolate some of the learnings put forward by speakers at this forum

 One of the things I am finding from attending various forums and talking to different people about self-directed approaches is that;

• People with disabilities and their families/supporters really need to change their ‘mindsets’ around how they use their disability supports.  We need to become more creative and think ’outside the box’ around how we use our disability supports. 
• We all must all work within community development principles  e We still have a long way to go and  we must not think that ‘self-directed approaches / individualised funding’ is the sole enabler for social inclusion.  Resources and attitude change must occur within our community and there must be change to our social facilities to accommodate the needs of people with disabilities. 
• We must not use self-directed approaches just to perpetuate already existing services.  We must request services that suit our needs. People with disabilities and their families must become more adamant about what they need.  We must begin to use advocacy assistance to gain the services that we want. 
• One statement that has stuck in my mind is that we must keep striving to make self-directed approaches work so that it becomes enshrined in our society.  We must do this to ensure that changes in government cannot ’swing back’ to the conservative type of delivery of disability support services. Bruce Uditsky spoke about how this is unfortunately, starting to happen in Canada

I came away from this forum with a slightly different way of thinking about how to utilise my disability supports.  I suppose, with the daily routine of life, it is sometimes hard to take a step back and ‘take a look at the big picture’ to make one’s life a little better.  As I said before this forum gave me some ideas how to use my disability supports in a different way.  I guess the difficult part now is how to implement some of these ideas into practice.  We need to search for people and services that  are assisting people with disabilities to make changes to our lives.  Over the coming weeks, I will be looking for services that  are being used by people with disabilities to better utilise their disability supports.

 I am interested to hear your views about how change can happen and what is out there that is different to the traditional service delivery.

 A few weeks ago I attended a forum put on by L.I.R.D.S. (Leadership in the Reorientation of Day services) in the North-\West Region.

For some background information, DHS is currently funding working groups and organisations acrossVictoriato implement self-directed approaches. In the Northern Metropolitan Region the LIRDS project aims to:

 Enhance the capacity of Chief Executive Officers (CEOs), Day Service Managers and other key leaders within Community Service Organisations (CSOs) to successfully lead the transition to self-directed approaches in day supports; and

 Support families to develop an increased awareness and understanding of the options available to their family member with a disability through the Implementation of Individual Support Packages (ISPs) and self-directed approaches.

 The forum  was for parents and families interested in taking on self-directed approaches. With the implementation of self-directed approaches, this forum was to explore what this new funding direction will mean for people with disabilities who currently use Day Services.  The aim was to encourage people with disabilities and their families ‘to dream and to have a conversation about what is possible.’

We heard from three parents who used different approaches to enable their children to live more fulfilling lives.

• Jeff Strully spoke about how using ‘Circles of Support’ has assisted his daughter with achieving her goals to live a life with ‘common ordinary experiences’ – just like those of his other children.
• Another parent talked about how the management of his disability funding has enabled her son to move from day services, where restricted practices were often used, to take up hobbies and activities in the community, by setting up different supports in his area.
• A third parent who through management of their funding has enabled them to pursue their child’s passion for art and how he has become a well know painter in his community.

 Attending this forum brought back memories for me when I announced to my mum and dad that I was going to leave the sheltered workshop to go to university to study law.  My mum’s first reaction was, “Who will look after you during the day”. For me leaving the safety and routine of the workshop was the best thing. I think self-directed approaches needs to be about parents thinking beyond the disability and taking control of the funding to develop the supports to meet the ability and needs of their sons / daughters  to create a better and meaningful life.

I remember before I started at university I had several meetings to arrange the disability supports that I would need to get through the day.  Once I settled in at university I cannot express the feeling of freedom I felt knowing that I had the supports when I needed to get through the day rather than having to fit in with supports that were offered by services at that time.

 While writing this, I was thinking it really comes down to the type of values and attitudes parent, people with a disability and their supporters  have. We need to take up self-directed funding “by the horns”; and be creative and strive to set up the best and most appropriate supports to achieve the most out of people’s lives.

 As stated by the two parents who presented,

“Parents will never know the full potential of their son or daughter until they work towards setting up appropriate disability supports to assist them to achieve this.”

 Look forward to your comments about how you have or intend to take on these new approaches by the horns.

This blog post will provide an overview of the forum and I will provide more detailed information about individual presentations in upcoming posts.

We heard from a number of people with disabilities who have successfully taken on self directed funding, about the practical ways it has changed their lives. Some of the themes that emerged were, self directed funding enabledgreater control of one’s life; transparency around one’s funding; better quality of care, just to name a few. The following three short videos were shown at the presentation.

Click on the image above to view the video vignettes as shown at the field forum

George Taleporos spoke about his experience of managing his own funding. He accomplished this many years before Self Directed Funding was introduced. He gave an outline of how he set up his own business to be able to manage his disability support funding and to employ his own workers. George answered a number of questions which had been sent via twitter. I will elaborate on these in another blog.

We heard from a parent who has taken on the management of her daughter’s funding. She spoke about how her daughter’s life has greatly improved since doing this.

Jane Morrell, a representative from Carer Solutions Australia, gave a presentation on what Carer Solutions Australia organisation could offer people with disabilities, parents and carers who have taken on Self Directed Funding. This organisation manages the administrative tasks of one’s support funding. They charge a percentage of a person’s disability funding.  

Deb Rouget from Personalised Lifestyle Association (PLA), gave an overview of the services that PLA provide.  PLA aims to provide assistance to people who have a disability together with their families/ allies who want to:

• Create “typical” lifestyle responses and supports (that foster community inclusion)
• Create personalised (one person at a time) supports
• Have influence over their own lifestyles Govern their own projects/arrangements and have high degrees of influence over service design and implementation.

Again I will elaborate on these services in future blogs.

It was encouraging to hear how services are there to support people with disabilities, families and carers to assist with their management of their disability funding. Although these services may be of benefit for people we must also remember that these services will be charging a fee and it is important to shop around.

People will need to research:

• What these services will offer for them
• Whether these services will be taking a fair or unfair percentage of the SDA funding?
• Whether it would be more cost effective for them to do the management of their funding themselves?

What do you think? I hope people who are using these services and people who are managing their SDA funding themselves will contribute to this discussion.