The Disability Information and Resource Centre

The online Expressions of Interest (EOI) process for participation on a mental health Consumer Reference Group (CRG) is now open.

The CRG will provide advice to an existing well-established non-government body, which will be responsible for establishing the infrastructure of the new national mental health consumer organisation. It is intended these auspice arrangements will be in place for about two years to assist the new organisation to transition into independence with strong and sustainable foundations. The Government is currently giving consideration to a non-government body to undertake this auspicing role, and will be announced in the coming months.

The CRG will be comprised of members with a diverse range of experience, skills, knowledge and backgrounds; and who have a commitment to a shared vision leading to improved quality of life, social justice and inclusion for people with mental illness in Australia.

The Department of Health and Ageing is coordinating Expressions of Interest for the CRG through an on-line process. For the purposes of this process, the term ‘mental health consumer’ is used, and is defined as follows: “a person with a lived experience of mental health problems / mental illness”).

Information about the role of the CRG and how to apply is available at www.health.gov.au/mentalhealth.

Expressions of interest can be submitted until Monday 4pm AEDT 20 February 2012.

Recently, concerns about waiting lists for accessible taxis for Christmas Day have again been raised in the media.

This highlights that the availability of reliable transport continues to be an issue for people living with disability.

In response to this, Purple Orange is setting up a web-based feedback mechanism to collect the lived experiences of people who are relying on accessible taxis in South Australia over the next few months.

What information is Purple Orange interested in?

People’s experiences using accessible taxis. These experiences can be positive or negative.

Who can be involved?

Anyone who is using accessible cabs during this period can be involved, and families and friends are also welcome to record their experiences.

Purple Orange are also interested in feedback from personal support agencies who may be helping individuals to get out and about.

How can I access the survey?

You can access the survey via the Purple Orange website www.purpleorange.org.au or click here to begin the survey now.

If anyone has difficulty accessing a computer or using an electronic survey tool they can call Alicia Fidock, Purple Orange Research Officer on (08) 8373 8311 or freecall 1300 857 327 to complete the survey over the phone. They will be open until 5pm, 23 December 2011 and then back on 3rd of January 2012. If you don’t receive an answer you can leave a message.

How many times can I complete the survey?

You are invited to complete an electronic entry each time you use, or assist someone to use, an accessible taxi. The survey will be open until 15 January 2012.

What will Purple Orange do with the information gathered?

Purple Orange will use the information to identify ways to work with the state government and the taxi industry to improve taxi services.

Purple Orange is working with a local newspaper who want to highlight some of the major findings from the recently completed Tellus survey. They are keen to talk with any person living with disability, or family members, who have personal experience of some of the issues the Tellus survey has highlighted.

The Tellus survey results show many people are living lives characterised by:

• Difficulties accessing personal support
• Costs (loss of income, impact on own health etc) on family members providing high levels of informal support to a loved one
• Little or no choice about who provides their personal support
• Difficulties getting out and about in the community
• Having few or no friends or meeting anyone new (whose not paid to be there)
• Little or no involvement in work or leisure or social life
• Lack of choice about where to live, or who to live with

More than 880 people completed the survey, and the findings lend weight to the issues and recommendations reported in the Social Inclusion Board’s report Strong Voices, currently with the state government for consideration.

In order to highlight the urgent need for positive changes Purple Orange are looking for people to share their stories.

Anyone interested in sharing their story (especially if it relates to the Tellus findings) is asked to contact Purple Orange on (08) 8373 8333 or freecall 1300 857 327 and ask to speak to Research Officer Alicia Fidock.

If you permit, Purple Orange will then put you in touch with the journalist. The newspaper hopes to interview people in time for the story to be published this weekend. The newspaper will also wish to take a photograph.

For more information, please contact Brigette Elliott on (08) 8373 8333 or email brigettee@purpleorange.org.au.

Brooke and Claire, Occupational Therapy students from the University of South Australia have created a survey on long term exercise for people with a disability:

WE WANT TO HEAR YOUR THOUGHTS – Long Term Exercise and Rehabilitation Activities for People with Disabilities. Our names are Brooke and Claire, and we are Occupational Therapy students from the University of South Australia. We are currently undertaking a community development project aiming to find out what the barriers are for people with disabilities when accessing long term exercise or rehabilitation activities in the community. If you are a person with a disability, or support someone with a disability, please take a couple of minutes to fill out our short survey. The answers you provide will be valuable to our project and will hopefully lead to improvement of services in the future for people with disabilities.

Please follow this link to participate in our survey: http://www.surveymonkey.com/s/PDF3863

The Community Services and Health Industry Skills Council (CS&HISC) invites you to contribute to production of their Environmental Scan (EScan) 2012.

The EScan is a formal part of the CS&HISC role as the developer of the national vocational education and training (VET) sector qualifications and competency standards housed in the HLT07 Health and CHC08 Community Services Training Packages. It is developed annually to ensure the packages reflect current and emerging work practice.

The EScan also supports workforce planning and development decisions by industry and government stakeholders.

The industries are changing as well as growing as consumer demand drives new service models. 2011 has seen progress against key reforms in sectors including disability, aged care, health and children’s services as well as in the education sector. EScan 2012 will provide an update on these and new developments and they are seeking public  input.

Submissions are invited by 2 December 2011.

You can either make a written submission or use an online survey. For details, see here.

Are you an adult with an Autism Spectrum Disorder?

Or

Are you a care‐giver of a child or adult with an Autism Spectrum Disorder?

Dr Jane McGillivray and Belinda Minett from Deakin University are conducting a study about the individuals and care‐giver’s perspectives of medication to manage behaviour and emotions associated with Autism. There has been lots of debate about the use of medication by people with autism spectrum disorder. However, little is known about the perspectives of people with ASD.

This study is designed to find out what you think about medication. Do you take it, what do you take and why, how do you feel about it. What you have to say is important to discussions about the best treatment alternatives for managing the conditions associated with ASD. Your answers are anonymous, so you can say what you want.

To proceed with the online questionnaire, click here.

If you would like a paper copy of the questionnaire or have any other questions contact Jane McGillivray Ph: 03 9244 6426 or Belinda Minett email: bami@deakin.edu.au.

The South Australian Health and Community Services Complaints Commissioner (HCSCC) is seeking your ideas about the redevelopment of their website. The new website aims to:

• improve your access
• provide helpful information to consumers, carers, advocates and service providers
• simplify navigation – so information is quick and easy to find
• have the capacity to add new functions – such as new ways to communicate

To find out more please read the  Information Sheet and then complete the short Website Survey.

HCSCC welcomes survey responses up until 5.00pm on Friday 7 October 2011.

The Department of Families and Communities (DFC) has provided some one-off funding in 2011 to start a state-wide autism project (SWAP) to develop a service improvement framework for people with autism spectrum disorder (ASD). Part of the one-off funding is allocated to undertake a “consumer and service provider survey by an independent contractor”.

The South Australian (SA) service improvement framework for ASD will be structured to reflect the key phases of the journey that an individual with ASD (and their family) will travel; diagnosis and assessment, early intervention, education, employment/day options, long-term care and care in advanced age. Mental health across the lifespan will also be addressed. Family support that encompasses adaptation to the diagnosis and at times of transition will also be a key component of the framework.

The intention of the framework is to drive improvements in services to achieve optimal outcomes for all South Australians with ASD through the provision of equitable, timely and effective services and support. The framework will also seek to reduce variations in support by outlining the services that all people with ASD should expect to receive from the Australian health and disability sectors, across the continuum of the condition.

The aims of the stakeholder consultation are:

1. To explore the experiences of key stakeholders with autism services within SA, and
2. To identify actual and perceived barriers and facilitators from the perspective of key stakeholders to the delivery of optimum services to people with ASD.

The stakeholder consultation is being conducted by Manya Angley Research and Consulting (MARAC), an organisation independent of Autism SA. Your responses will be anonymous and be treated confidentially.

If you prefer to communicate your views via the on-line survey, it may be accessed at http://www.surveymonkey.com/s/8PBXJ3D. Alternatively, if your preference is to participate in a semi-structured interview, which can be conducted by telephone, Skype or face-to face at your convenience, please contact: Manya Angley, Director of MARAC, to register your interest Ph: 0400 951 179 or email: manya@marac.com.au

It is anticipated that the survey or interview will take about half an hour.

Carers of adults with a mental illness find it difficult to access the Carer Payment and the Carer Allowance. In 2004, the government reported that 1.3 million Australians are missing out on the Centrelink benefits designed to help them to participate in the community.

Carers Victoria are conducting a survey to find out more and to inform government what needs to be done to ensure that carers of adults with a mental illness get the payments they are entitled to.

There are two ways you can participate:

1. An online survey (allow around 15 minutes to complete).
2. Via telephone conversation or interview (allow around 30 minutes).

For more information, click here, or you can send an email to Penny Paul to register your interest.

Due to the large amount of interest in the Tellus Survey at the DIRC Disability and Ageing Expo last week, Purple Orange have extended the closing date for responses to Sunday August 21 at 5pm.

Participating in the survey could win you an iPad 2!

The Tellus Survey is developed by Purple Orange to gather information from people living with disability about their lives.

Findings from the previous survey has informed a number of policy submissions including; National Human Rights Consultation, National Disability Strategy, and Disability Care and Support, as well as three Tellus reports; Having Choice and Control, Accessibility, and Disability Funding – Where should it go?

Any person living with disability or any member of the disability community is invited to participate.

How to complete the survey

• Complete the survey online at www.surveymonkey.com/s/JFA_Living_with_Disability_Survey
• Obtain a hard copy version by calling Purple Orange on freecall 1300 857 327 or (08) 8373 8333 or emailing admin@purpleorange.org.au
• Completing an electronic version of the survey and saving the completed version on a CD which can be sent back. To obtain the electronic version please contact us as above
• Calling Purple Orange on 1300 857 327 or (08) 8373 8333 and giving your responses verbally over the phone

For more information contact Robbi Williams at Purple Orange by emailing robbiw@purpleorange.org.au or calling (08) 8373 8333 or freecall 1300 857 327.