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PEER SUPPORT GROUPS IN PERTH METRO AND REGIONS

Would you like to find out more about peer support groups in WA?

 

Are you looking for a service provider?

Click here to find:

- the link to the list of disability service organisations which provide service on behalf of Disability Services Commission, sorted by region: REGION

- the list of services registered to provide services under NDIS in our State: WA

Are you interested in participating in research projects?

 

 

 

 

Telethon Kids Institute has developed a questionnaire to measure 'quality of life' in children with Down Syndrome.

They are seeking parents with a school aged child or adolescent with Down syndrome to road test their new questionnaire.

Siblings Australia is running a project, "Creating Capacity: Support for Adult Siblings Project" to build the capacity of siblings to understand the NDIS and to support their brothers and sister with disbility in the transition to the NDIS environment.

A reference group is being set up to guide the implementation of the project, and the group will oversee the governance and help maximise outcomes for siblings, people living with disability and their broader families in the light of the NDIS.

If you would like to find out more about this project, or be part of the reference group:

  

 

Click on the image above to read the report....

"The lives of people with disability are often secret lives. We are routinely segregated and isolated from our non-disabled peers – we live, work and play in places which are not often frequented by those without disability. Often, we are lonely. If we do not have families, paid staff are sometimes the only people in our lives. We are shut out by barriers to participation in Australian life, and shut in when we are hidden in institutional settings."

(Report authors Samantha Connor and Ben Keely)

The Peer Connect website is for people living with disability, their families and supporters.

The website has information about having choice and control in your life, the NDIS, connecting with Peer Support Networks and getting involved with your community.

www.peerconnect.org.au/

 

Duchenne Foundation in WA have published a great new story for children called "That's What Wings Are For". Part proceeds from sales of the book will go to the Duchenne Foundation.

Read more about it here, including an author interview 

  

 

 

 

 

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You can be part of these research projects and contribute to positive change by sharing your experiences and opinions. 

 

21 June 2017

THE SAFETY PROJECT

Centre for Children and Young People 

Survey for young people  

This survey is for young people with disability. It is about what helps you to feel safe, and be safe.

If you have 10 minutes, they would love to hear from you!

  • What helps you to be safe?
  • Will you tell about your ideas about safety?  

  You can share what you think by doing the Centre's survey. Click here to start.

 Survey for supporters  

  • Are you a family member, friend, support worker or advocate of a young person with disability?
  • Have you got some ideas about what helps them to feel, and be, safe?

The Centre for Children and Young People are doing research about what helps young people to feel safe, and to be safe.  If you have 10 minutes, they would love to hear from you!  You can share what you think by doing the Centre's survey here.

Dr Sally Robinson is contactable here.

Background details: 

The Safety Project is research being conducted by the Centre for Children and Young People at Southern Cross University, with the UNSW Social Policy Research Centre, People with Disability Australia and Children with Disability Australia.

Dr Sally Robinson and Meaghan Vosz are talking to young people with disability aged 16 - 25 across Australia about what safety means to them, and what helps them to feel and be safe.

In WA they talked with many young people and service providers to find out what 'being safe' means to young people with disability, and how we can better support them to be and feel safe. Sally also presented the Safe at School research conducted in by the Centre in 2014 in a seminar for parents, supporters and service providers held at Developmental Disability WA.

 

 

 

7 April 2017:

Relating, Dating and Intimate Relationship Viewpoints 

This is an online study to gather the viewpoints of young adults (18-30) with and without Autism regarding relating, dating and intimate relationships.

 

Overview: To gather the personal views of young adults on friendship, dating, and forming long-term relationships within an Australian cultural context.  We know this is a difficult area for everyone and we want specific feedback from people on the Spectrum because we do not know what areas are the most problematic. The aim of this study is to inform future relationship support programs to help address the unmet needs of young adults on the Autism Spectrum. The study involves sorting 36 statements on relating, dating and intimate relationships from most to least confident, takes about 5-10 minutes to complete and is de-identified to ensure privacy.

 

Participants need to be 18-30 years old, raised in a Western culture, identify as neurotypical or on the Autism Spectrum and be able to independently complete this online study.

 

For further information contact

 

Rachelle Quintner, Honours Curtin University

rachelle.quintner@student.curtin.edu.au

 

 

Bob Jackson and Include are asking parents of children with a disability included in mainstream classrooms and the students themselves where possible, to rate how well their school is meeting the Disability Standards for Education (2005) as well as the inclusiveness of their educational experience.  They are also looking for ratings by teachers and principals of their school, as well as ratings of others directly involved such as teacher aidesadvocates and visiting professionals

The link to the survey is below.  It only takes a few minutes to complete, and does not identify individual schools.  Please complete the survey and pass the link on to other families as well as teachers, principals and other relevant people.  The more people who complete the survey, the more valid the results.  Even though the Standards have been a legal requirement since 2005 they have never been formally assessed, so this will be the first opportunity to determine how well they are working across Australia.  

Brief information on the standards is included when you open the survey, but if you would like to read more about them click here: https://education.gov.au/disability-standards-education

The results will be published when completed, but if you include your email address in the survey, an individual update will be provided.

https://www.surveymonkey.com/r/EducationStandardse

Thanks for your help with this important research.

Bob Jackson PhD, Bob Jackson PhD, Psychologist Adjunct Associate Professor Curtin University

 

 

November 2016:

Telethon Kids Institute has developed a questionnaire to measure 'quality of life' in children with Down syndrome.

They are seeking parents with a school aged child or adolescent with Down syndrome to road test their new questionnaire.

The questionnaire will take about 10-15 minutes and can be done online or on paper.

If you would like to find out more please contact Dr Jenny Downs (Jenny.Downs@telethonkids.org.au) or Ms Amy Epstein (Amy.Epstein@telethonkids.org.au). They will be very happy to provide you with more information, or read on for some further background to this research:

BACKGROUND INFORMATION

Our understanding as to which factors are associated with their best quality of life in children with intellectual disability is disappointingly poor. This is partly because it has been difficult to measure the child's quality of life and so the goal of the Telethon Kids Institute researchers has been to develop a robust quality of life measure for those children specifically. To do this, they have conducted 86 interviews with parents with a child with either Down syndrome, Rett syndrome, autism spectrum disorder or severe cerebral palsy. The conditions together represent a range of strengths and problems that the children may have.

During the interviews, the researchers asked parents about what was happening when things were going well for their child and the things that were happening when things were not going so well. The interviews told the researchers about their child's experiences of satisfaction and challenge in life. From this very rich grass- roots information, they have now constructed a quality of life questionnaire especially for children with intellectual disability.

They have checked the questionnaire with families and they now need to test the questionnaire statistically.

The researchers particularly need families with a school aged child with Down syndrome to join this study, and to participate parents will be able to log in to their website and complete the questionnaire which will take around 10-15 minutes.

The researchers hope that this new quality of life measure will more clearly identify the child's support needs and will have a role in future research that evaluates new treatments.  

Contact: Dr Jenny Downs (Jenny.Downs@telethonkids.org.au) or Ms Amy Epstein (Amy.Epstein@telethonkids.org.au)details for more information. 

 

 

September 2016 - June 2017:

What is the "Creating Capacity: Support for Adult Siblings" project?

It's aimed at building the capacity of siblings to understand the NDIS and to support their brothers and sisters with disability in the transition to the NDIS environment. This will provide a whole-of-family approach.

Who are Siblings Australia?

They were established in 1999 with a focus on siblings of children and adults with disbaility or chronic illness. Since then Siblings Australia has developed a national and international reputation for its work with families and professionals. Siblings Australia aims to create connections between siblings, beteen parents and siblings, and bteween families and professionals, with a focus on strengthening families. 

What is the Reference Group being created for?

To guide the implementation of the Creating Capacity project. The Reference Group will oversee project governance and help maximimse outcomes for siblings, people living with disability and their broader families in the light of the NDIS.

What will the project actually do?

- Develop a range of onine information packages and resources for siblings 

- Develop opportunities for peer support and mentoring both online and in person

How often will the Reference Group meet?

At first, monthly. Following that, less frequently. Meetings will generally be held by teleconference.

Confidentiality

All matters discussed will be confidential.

Would you like to find out more about being part of the Reference Group?

For further information contact Kate Strohm, Director Siblings Australia, on 0408 720 558 or kate@siblingsaustralia.org.au

 

 

 

 

January 2016:

NAME OF PROJECT: Family carer experiences of mental health services, knowledge and help seeking for people with intellectual disabilities

Macquarie University researcher Joyce Man is completing her PhD in Psychology. She is looking to connect with:

- Family carers of an adult with intellectual disability

- Services must have been sought in the past two years to address challenging behaviours and/or mental health concerns via local hospital or community health, government or non-government disability services

Information gathered from this study will assist in the evaluation of current mainstream services and provide suggestions to improve accessibility for families. 

The study will also provide insight into family carer's knowledge of mental health issues which will inform further education requirements to families. 

Responses will be treated confidentially: No individual will be indentified in any publication of the results; the study is not affiliated with any health or disability services and your participation will not impact on service access. 

Click here for the online survey or cut and paste the following into your browser: https://mqedu.qualtrics.com/jfe/form/SV_3ZZHIuVJTkxxIVv   The survey should take no longer than around 45 minutes to complete.

For further information contact joyce.man@students.mq.edu.au

 

 

Are You Interested in Participating in a Research Project Exploring Supported Living Arrangements that Enable an Adult with Intellectual Disability to live in His/Her Own Home?

The School of Occupational Therapy and Social Work at Curtin University is undertaking a 2-year research program that is funded by an Australian Research Council Linkage Grant. The Individual Supported Living (ISL) Project builds on two previous projects since 2007 that explored individual supported living for adults with intellectual disability.

ISL means supported living arrangements that enable a person with a disability to live in their own home. These sorts of arrangements, which take many forms, are becoming more common. They provide alternatives to arrangements such as group homes that require a number of people with disability to live together. Curtin, which is leading the Project, is partnered with Sydney University and Deakin University and more than 10 NGOs.

If you would like to find out more, open the document here where you will also find contact details.

 

 

Curtin University would like to speak with families about their experiences with Autism Spectrum Disorders.

The Curtin Autism Research Group, in cooperation with the Disability Services Commission is conducting a survey to learn about the experiences of families with a child/young person (aged 2-18 years old). 

This survey is particularly timely with the role-out of the new National Disability Insurance Scheme (NDIS). It is also one of the most comprehensive surveys ever to be undertaken with families living with a child with ASD in Western Australia. Information collected from this survey will inform future services and policy. Importantly, this is the first wave of a longitudinal study that will allow us to learn how the needs of families with a child with ASD change over time.

Who can participate in the survey?

If you are a parent or a primary caregiver of a 2-18 year old child/young person diagnosed with ASD, and live in Western Australia, you are eligible to participate in the survey.

Find out more.....

  

 

Be part of the first Australian Autism Biobank

Telethon Kids are creating the first Australian Autism Biobank, which is a store of behavioural and biological information.

This project is being conducted across four Australian sites (NSW, OLD, VIC, & WA) and aims to collect detailed information on children with autism to find out more about the causes of the condition.

The Biobank project is a long-term approach towards establishing a strong autism research program in Australia contributing to national and international research.

Telethon Kids are hoping to recruit a large number of children with autism and their families for this project. 

For more information contact Andrew Whitehouse: 9489 7777 or click on the flyer for more details.