Research on interaction with play therapists in hospitals

Sarah has asked us to advertise her survey so that children with disabilities are represented in her research:

Hospital Play Therapy

Parents:

• Has your child experienced hospitalisation?
• Are they aged between 0-12 years?
• Have you and/or your child been involved with Hospital Play Therapists?

If you answered Yes to the above questions, you are invited to participate in a research study looking at the partnerships between hospital play therapists and families.
Your experiences will provide valuable insight into the existing partnerships and will aid in creating positive hospital experiences for young children.

If you are interested please follow this link https://www.surveymonkey.com/s/PVYLDG2 for more information.

Sarah Scott

E: sarah.scott@students.mq.edu.au
Ph: 0425 225 050

Eastern Sydney Speak Up Group Information Session

IDEAS NSW invites people with an intellectual or learning disability, their supporters and any interested service providers to attend the Speak Up Group Information Session.

The goal of the Speak Up Group is to provide an opportunity for people with an intellectual disability to get together and talk about Human Rights and self advocacy skills, as well as to make new friends and socialise.

So far IDEAS has had the help of a great pilot group who have contributed to the development of this project, including identifying topics and issues that might be important to people with disabilities, and in developing resources.

The information session is an opportunity to learn about the objectives of the group and how it will be run. Members of the pilot group will also be there to share their thoughts and experiences of the project. IDEAS NSW will also ask people for their thoughts about the best way to plan and run the Speak Up Groups in the future. Some of the topics that the group can cover in the future include Human Rights, communication skills, making complaints and finding out where to get help.

Thursday 28 July 2011
2pm – 4pm

Meeting Room 2, Level 2 Mill Hill Centre, 31-35 Spring St, Bondi Junction
Afternoon tea will be provided.

If you would like to come along or would like more information please call Rachel at IDEAS on 1800 029 904 or email RachelSpencer@ideas.org.au

Spark 2011 Creative Arts Festival

This festival is designed to allow people with a disability the chance to find their voice through the creative outlets of music, dance, art and performance. In a positive and safe environment, people with a disability can come together to share their stories, interests and ideas and be given the opportunity to share their experiences.
Held over three days, people with a disability will work and interact with professional and accomplished community artists who have been drawn from numerous artistic mediums to provide workshops throughout SPARK.

The aim of the workshops will be to take every festival participant through a series of sessions including the process and production of an original CD recording. Each step in the process will build skills and encourage each individual to tap into their creativity.

Professional artists will be presenting workshops and performing for the festival participants as well as working side by side and in support of participants. On the final day of the SPARK Festival the people with a disability will have the opportunity to express their skills through a performance and presentation.

Wednesday 26 October to Friday 28 October

Tops Conference Centre, Stanwell Tops.

For more information and registration please click on the following link: http://thejunctionworks.org/news-events/events/spark-2011-creative-arts-festival-0

Source:  IDEAS e-News Issue 22, July 2011

Gray, green and gold

Interview with Joshua Gray, Special Olympics World Games muliple medallist in gymnastics, and his proud grandfather, in the Australian Jewish News.

Webinars coming up

A number of webinars (seminars conducted via the internet) on a wide range of topics about people with Down syndrome are coming up, from international organisations. Some offer live sessions during the day for Australian time zones, others are post permanent links to video of the presentations. Most make documents about the content available online. Some are free, and there is a small charge for others.

Boston Children's Hospital Speakers Program
The excellent Down Syndrome Program of Speakers for Parents is now in its second year at Boston Children's Hospital. Each event is webcast live, with the talk then being made freely available online to access at any time, bringing a world class expert to your computer. A few days afterwards, notes and handouts are posted, along with the online video.

All links and schedules are available here.

Already available online from the 2011 series:
Postsecondary Education, Employment and National Service
Breastfeeding and Down Syndrome
Dental Issues in DS and Orthodontics in DS
Autism and Down Syndrome
Complex Care Needs and Down Syndrome

Coming up:
September 6, Cynthia Haddad, and John Nadworny on Financial Planning for Families
October 24, Margaret Kenna and Lisa Walker on Hearing/Audiologic Concerns and Down Syndrome
November 1, JoAnn Simons, on Transitions for Young Adults with Down Syndrome
December 12, Priscilla Osborne and Jessica Konter on Gross Motor Skills and Down Syndrome

Down Syndrome Education International has reached the final stages in its current reading research with children with Down syndrome, and is offering an online event. Read about the preliminary findings and publication plans here.

Find out more at the free online event:
20 July 2011 6.30pm Sydney time
Register here.

Proloquo2go
The producers of the very popular communication app Proloquo2go are planning two series of free webinars during the northern hemishpere summer - one for professionals, and one for families.
Descriptions of the content, the schedules and online registrations are available here.

Developmental Disabilities and Challenging Behaviour: Research to Practice and Policy - Conference

30 September 2011
Camperdown campus, University of Sydney

The Faculty of Health Sciences and Brain and Mind Research Institute, University of Sydney in association with the NSW Council for Intellectual Disability is pleased to announce the conference: "Developmental Disabilities and Challenging Behaviour: Research to Practice and Policy”.

Leading international and Australian researchers will present the latest developments in supporting challenging behaviours in people with autism spectrum disorders and intellectual disability. Strategies for gaining government support to implement proper services will also be a focus.
This conference will benefit those working with people with developmental disabilities in community and health settings, as well as research students and academics, and clinical practitioners.

Registrations will open in July 2011

Enquiries can be directed to: Imelda Noti Imelda.noti@sydney.edu.au  or Prof. Stewart Einfeld, Convenor stewart.einfeld@sydney.edu.au  

More information can be found here.

Down Syndrome NSW Office closed Friday 15th July for one day

The Down Syndrome NSW office at Harris Park will be closed tomorrow,
Friday 15th July while some building repairs are carried out. 
Business will resume as usual on Monday 18th.

Living life my way: Person centred approaches consultations, August 2011 (ADHC)

From Ageing, Disability and Home Care, on the scheduled Person centred approaches consultations, launched with a 2 day summit last week.  Consultations will be held across NSW.  We urge families to have their say, either by attending a local consultation meeting or by making a submission.  Individual families' points of view and stories are an important part of this process.  More information is available on the ADHC website:

Message from the Minister about Living life my way

Register to attend a consultation

Consultations with people with a disability, their families and carers, as well as workshops with service providers will be held from 1 August to 2 September 2011 at a range of locations around the state.
The consultation sessions will involve small focus group discussions with people with a disability, their families and carers so that every participant has an opportunity to have their say.

• Person centred approaches consultation schedule (PDF)

To register to attend, visit www.pcasummit.net or call (02) 4984 2554.

 

How to make a submission

You can make a submission by:

• Email: pcaconsultations@dhs.nsw.gov.au
• Post:
  Manager, Person Centred Approaches
  Ageing, Disability and Home Care
  Department of Family and Community Services
  Level 5, 83 Clarence Street
  Sydney NSW 2000

If you require assistance to make a submission or would like further information about other opportunities to participate in the consultation process, please contact the Person Centred Approaches Team on (02) 8270 2132.

Disability in education follow-up survey - input to talks with Australian Government

Here's an oportunity to have a say on education and students with disabilities, by completing an online survey:

The Australian Youth Affairs Coalition (AYAC) recently conducted a survey on the Disability Standards for Education and these results were shared with to the Government. Since then, the Federal Government announced $200 million extra funding for school students with disabilities.

AYAC will be meeting with the Minister for Youth and Schools Education on 11 August this year. That's why we would like to hear your views on education and disability so that we can present them to decision-makers so that they can better support you.

Your answers will remain anonymous, so please take 5-10 minutes to complete the survey - or pass it on to your friends and your networks.

The survey closes Friday 29 July.

Website of the week: Down's Heart Group

About half of all babies born with Down syndrome also have  congenital heart condition (commonly known as a 'hole in the heart').  While almost all of those conditions will be corrected by surgery or will heal without interference, dealing with a heart condition, with heart surgery and other treatment is often overwhelming for parents, and Down syndrome might be a secondary consideration while it is taken care of. A very few congenital heart conditions will be ongoing, and the availability of ongoing support for families is important.

Down's Heart Group is a long-established UK  charitable organisation that provides information and support specifically about the range of heart conditions that can occur in people with Down syndrome of all ages. 

Information is provided from a parent's perspective, and  checked for accuracy with appropriate medical professionals. It includes the expected qualification that "... information provided on this website is to assist with understanding only and should never be used as a substitute for professional medical opinion.

While some information is specific to the UK, much of it is useful to families anywhere.

This well researched website can complement support offered in relation to Down syndrome alone and to heart conditions alone, at times when both or either can be very challenging for families.

Self-directed funding - learning from the Canadians

Resourcing Families is a new initiative of Family Advocacy.

Creating Inclusive Lives – the Canadian Experience

This workshop is for families, friends and professionals interested in creating rich inclusive lives for people with developmental disability.

The workshop gives you the opportunity to:

· learn from many years of experience in self directed funding in Canada

· hear about strategies to build inclusive communities

· explore opportunities for post school life

· understand the value and importance of a vision in creating a rich life

This one day workshop includes presentations by family members and professionals who have a long history of supporting inclusion and self directed funding in Canada. It is a wonderful opportunity to learn directly from a large group of people who have experienced many years of self-directed funding in Canada, and will be particularly helpful as the NSW government has committed to making self-directed funding an options for all support by 1 July 2014.

Thursday 18th August 2011
Ryde Eastwood RSL Club, West Ryde

Registrations and payments must be received by 4th August 2011

Further information on the impressive list of speakers and options for concurrent sessions is available from the flyer/registration form, and from the Resourcing Families website.

Apps 2

 

Apps for Literacy Support - Greg O'Connor from Spectronics has created a list of Apps for iPad and iPod Touch/iPhone that support the literacy needs of people who struggle with reading and writing. Included in the list are Apps to support reading text, writing, note taking, organisation and study.

Apps for children with special needs is a website allowing users to see apps in action before you buy, via video demonstrations.

Lillie's Pad is a blog about iPad and iPhone resources designed for and/or used by children with disabilities.

For earlier listings, re-visit this post from 18/06/2011

Lake Cargellico fundraiser for Down Syndrome NSW

Coden Stenhouse is just eighteen months old, but but he is already well known and loved in his home town of Lake Cargellico in the Riverina.The Tullibigeal Lakes United Sharks rugby league club held a very successful charity day on 26th June, with more than $12,500 raised for Down Syndrome NSW! The local community really got behind the day, at which Coden was the mascot, in his own tailor made Sharks jersey. 

Coden with his cousins, Jaden and Tenayah Kelly modelling the charity jerseys that were so succesfully auctioned on the day. 

The event was big news in the Lakes News. Coden is pictured with his Mum, Deanna.

Organiser Kerry Amoamo reports that the weather was perfect, the crowd huge and the auction of football jerseys awesome, under the gavel of Dasher Frankel. Coden had a great day, along with his little friend from Condobolin, Jock. Junior, senior and first grade matches between the Sharks and the West Wyalong Mallee men entertained the crowd.

Funds were also raised through a raffle and donations. Kel's Kitchens provided the much appreciated coffee, and donated the proceeds.

Our grateful thanks to the community of Lake Cargellico and Tullibigeal for your generosity and support for the organisation, and for Coden and his family.

More photos are in the Down Syndrome NSW Facebook album, Lake Cargellico - 2011

Help test a new online program, to teach behaviour management skills

From the Parenting Research Centre (which provides the Raising Children Network among its other activities):

 

One of our research projects is seeking parents of children aged 3-9 with a developmental delay or intellectual disability and difficult behaviour to participate in the trial of an exciting new online program called the Behaviour Skills Builder.

 

Parents of children with special needs who are finding their child’s behaviour difficult to manage are welcome to participate.

Behaviour Skills Builder is free, can be done online in your own time and only takes 30 minutes each week for 6 weeks to complete the online component. Parents will be able to:

• gain a better understanding of why certain behaviours occur
• tailor a plan specifically to suit their child
• try out strategies with their child in between online sessions.

Information about the project is available here. To find out how to take part, contact the team on behaviourskills@parentingrc.org.au

Swimming lessons - inner west Sydney

Kathleen Collins (Emily’s Mum) has organised a Learn to Swim Program  in collaboration with Special Olympics Inner West.

Starts Saturday , 23rd July (Term 3)

Cost is $80 per term with one on one fully qualified Swim Instructors.

Time slots are half hour lessons from 1pm - 4pm every Saturday during school terms.

Where: Annette Kellerman Aquatic Centre, Marrickville (great new pool)

You must be registered with Special Olympics to take advantage of this offer. Limited places are available.

Contact Kathleen on 0405 100 753 or email kath2012@tpg.com.au

The Tricky Bits : Bolshy Divas submission to Productivity Commission

This submission to the Productivity Commission Inquiry into a Disability Care and Support Scheme must have been a refreshing change for the Commissioners and bureaucrats.  It's intent and arguments are every bit as serious and valid as the more usual formats for such submissions. 

They're home!

Most of the Special Olympics Australia team returned from the World Games in Greece late last week.  Here are some of the athletes we have been following, rejoining their families at Sydney airport, with a a very warm welcome home:

• Rhianna Sinclair (gymnast)
• Tracie Sammut (gymnast)
• Mel and Fran Eustace (softballer and coach), and again here.
• Andrew Mujunen (softballer)

They look pleased to be back, after a a wonderful experience. Our congratulations and thanks again to the communications team and photographers who have allowed us to share in their experiences.

Have your say about the new (Australian Government) Supported Accommodation Innovation Fund

Individuals and community groups now have the opportunity to provide feedback on the draft Program Guidelines for the Supported Accommodation Innovation Fund initiative.

This $60 million initiative, spanning three years will help build innovative, community-based supported accommodation places for people with disability.

This funding will be used to create 150 new places to help address the need for accommodation and respite places for people with severe or profound disability, their carers and families. Projects could include renovations to existing homes, pooled resources to build contemporary accommodation services close to community and health services or the modification of existing accommodation within the community.

The draft Program Guidelines are now available on the FaHCSIA website, along with details about how you can make a submission. Your feedback will help shape the final Program Guidelines to be released later in 2011.

Comments will be accepted by email only, and submissions close on 25th July 2011.

Source:  FaHCSIA

Website of the week: paulakluth.com

Dr Paula Kluth was in Sydney in March, presenting workshops on inclusive schooling for Family Advocacy.  Several Down Syndrome NSW members attended the workshops and found them excellent. Renowned for her work related to educating children with autism, her ideas and strategies for differentiating instruction are applicable much more broadly. 

paulakluth.com has been redesigned and relaunched recently, and is well worth a bookmark and a regular check-in for new ideas and information:

• it is bright and welcoming (those pencils look delightfully well-used!)
• the content is excellent - there is a bank of very useful free articles, and much more
• navigation is easy
• the blog is updated regularly, including a 'tip of the day'
• a direct link to her Facebook page is provided (where she  posts a website of the week, each Wednesday, among other posts)

The website introduction:

This website is dedicated to promoting inclusive schooling and exploring positive ways of supporting students with autism and other disabilities. Most of my work involves collaborating with schools to create environments, lessons and experiences that are inclusive, respectful and accessible for all learners.

Parents of disabled children rebel against suspensions

From page 1 of today's Sydney Morning Herald, a report about legal action being taken by NSW parents about the use/misuse of suspension policies when students have disabilities.  Readers are invited to submit their own experiences:

Parents of disabled students are taking the Education Department to court alleging discrimination, saying their children are being punished for their disability by being suspended from school.

One boy from Wagga Wagga, with a mild intellectual disability and emotional disorder, was suspended three times for a total of 80 days as an eight-year-old. He is now 10 and his mother last month filed a $50,000 damages claim against the department in the Federal Court.

His lawyer, Phillip French, the director of the NSW Disability Discrimination Legal Centre, said the boy was effectively ''left with no education at all, not even home schooling''.

 ... read more of Andrew Stevenson's article.