DS NSW e-Update, May 2010

The online edition of our monthly information and events bulletin, Down Syndrome NSW e-Update, May 2010 is now available here.

You can subscribe to email delivery using the link in the masthead.

Inquiry into planning options and services for people ageing with a disability

This Senate committee is investing:

Access to planning options and services for people with a disability to ensure their continued quality of life as they and their carers age, and to identify any inadequacies in the choice and funding of planning options currently available to people ageing with a disability and their carers.

The Committee is seeking written submissions from interested individuals and organisations preferably sent electronically by email to community.affairs.sen@aph.gov.au  as an attached PDF or Word format document.The email must include full postal address and contact details.

Alternatively, written submissions may be sent to:

Committee Secretary

Senate Community Affairs References Committee

PO Box 6100
Parliament House
Canberra ACT 2600

Closing date for the receipt of submissions is 28 May 2010.

Terms of reference and further information is available from the Inquiry's web page.

Down Syndrome NSW is compiling a submission, and welcomes members' input - please contact Kathi Beck, library@dsansw.org.au  or phone 9841 4410 on Tuesdays or Thursday (or leave a voicemail at other times). Individual submissions are, of course, encouraged.

Library Thursdays: Exercise and physical activity

At the World Down Syndrome Congress last year, Nora Shields spoke about the need for physical activity and how it is more difficult for people with Down syndrome to move due to low muscle tone and other factors. Lack of activity has an impact on health, work possibilities and quality of life so activities need to be found that are enjoyable and not difficult. We have a few resources in the library that could be helpful.

Down syndrome: Play, move and grow by Anne Jobling & Naznin Virji-Babul (DSRF, Burnaby, Canada, 2004) looks at each age group and how motor development progresses and can be encouraged. It is a bit clinically but there is much good information and research.

Gross motor skills in Children with Down syndrome by Pat Winders (Woodbine House, 1997) is a classic for motor development activities in the early years. And Motor Skills Development for individuals with Down Syndrome by Ben Sacks & Sue Buckley provides the usual great research and information from Down Syndrome Education International.

Yoga for the Special Child: a therapeutic approach for infants and children with Down syndrome, cerebral palsy, learning disabilities by Sonia Sumar (Special Yoga Publications, 1998) gives an easy to follow program for parents and professionals.

Yoga and children with Down syndrome- shows the introduction to a DVD on yoga done with people with Down syndrome.

Links to sports activities can be found in this blog as we become aware of them as well as on our website.

If you'd like to borrow any of the resources or anything else from the library, just email or phone us.

Respite Guidelines and New Directions in Respite Services: new from ADHC

Two new publications related to respite care services have been released by (NSW Human Services) Ageing, Disability and Home Care:

Respite program guidelines (disability) - Operated and funded services under the disability services program

About the respite program guidelines

The Respite program guidelines (disability) (the guidelines) provide the framework for respite service delivery for Ageing, Disability and Home Care, Department of Human Services (ADHC) operated and funded disability respite services. The guidelines have been developed by ADHC to support ADHC and non-government providers in delivering respite services in NSW. These guidelines will also be used by ADHC staff involved in the performance monitoring and reporting of respite services.

These guidelines provide an outline of respite services, the role of respite services within the disability service environment and the principles and values that should guide service delivery. They provide information about ADHC’s expectations for the provision of respite services by ADHC Regional and funded providers, while also enabling providers to deliver services in ways that respond to the needs of respite users and local conditions. The guidelines reflect the NSW Government’s commitment under Stronger Together: A new direction for disability services in NSW: 2006-2016 to expand existing respite services and build a more flexible and responsive disability respite service system.

These guidelines are not intended to provide detailed operational guidance but should be considered within the existing policy framework as set out in the funding agreement and the description of funded service or the service description schedule.

Copies of these guidelines and the documents referred to in the guidelines may be obtained from ADHC’s website at www.adhc.nsw.gov.au

Content
About the respite program guidelines
Services these guidelines apply to
Updating the guidelines and feedback from service providers
Overview of respite
Responding to a growing need for respite
Principles
Eligibility and priority of access
Service types
Funding
Operational service requirements
Service monitoring
Legislation and policy
Working in partnership
 

New directions for disability respite services in NSW  is a report on consultations about respite services in NSW, conducted during 2009.

From the introduction:

The (paper) New directions for disability respite services in NSW has been developed to assist in the reform and expansion of disability respite services.

It will guide the way future disability respite services are delivered, how people access those services, the types of services provided, the settings in which they are delivered and the development of new respite services across the sector.

.... Ageing, Disability and Home Care (ADHC) has consulted with a wide range of stakeholders and reviewed national and international research along with key research conducted locally by Interchange NSW and Carers NSW.

..... In all, more than 30 consultation forums were held across the state where families and carers told us what types of respite services they need, how they would like respite services to be delivered and the times at which they need respite support. Respite service providers and advocates suggested ways in which the respite service system could be improved to ultimately deliver the best possible respite support for their clients. In addition to the forums more than 50 separate written submissions were received from people with a disability, their families and carers, advocates and service providers.

Revision of the National Standards for Disability Services

From April 2010, people will be able to participate in consultations to support a revision of the National Standards for Disability Services (National Standards). The consultation is open until July 2010.

Focus Groups
For further information on focus groups and workshops in NSW, please contact Sonia Davda, Policy Officer, Ageing, Disability and Home Care on (02) 8270 2093 or by email at sonia.davda@dadhc.nsw.gov.au

Online Survey
From 21 April 2010, people wishing to complete an online survey can go to
http://www.dhs.vic.gov.au/disability/improving_supports/national-quality-framework/online-survey-for-the-national-standards

Written Submission
From 20 April 2010, people wishing to write a submission can find the template at
http://www.dhs.vic.gov.au/disability/improving_supports/national-quality-framework/written-submission-for-the-national-standards

Telephone feedback
From 22 April 2010, people wishing to give telephone feedback can call the NSW Fair Trading Information Centre on 1300 528 937.

Source, and further information:
Revision of the National Standards for Disability Services,  Bulletin #3 – March 2010, posted on the AHDC website.

Entertainment Book 2010 - 2011 is now available

BUY A BOOK TO BUY A BOOK - you can support the DS NSW library by buying the Entertainment Book 2010 - 2011.

The Entertainment Book is a restaurant and activity guide that provides special 25-50% discounts and 2-for-1 incentives from many of the best restaurants, hotels and attractions. It represents great value for family entertainment. The featured restaurants and other businesses do not pay to be included, they are selected based on awards, reviews and personal recommendations. See the Entertainment Book web site for more information.

You can order localised editions, including North Sydney, The Hills/Parramatta, Canberra, Central Coast/Newcastle/The Hunter, and there are interstate and even New Zealand editions that would make great gifts.

• Click here to download the Entertainment Book 2010-2011 order form for Sydney and North Sydney
• Click here to download the Entertainment Book 2010 - 2011 order form for Parramatta and the Hills

 or contact Angela Adams at the DS NSW office on (02) 9841 4409 or email admin@dsansw.org .au for an application form.

 

Thank you for your support - enjoy your Entertainment Book's benefits.

 

Young man with DS in University of Utah Valley program

Reed Hahne is a young man making his way in the world, making the most of opportunities that were almost unthinkable a generation ago, and remain unusual - while school systems still wrestle with supporting students appropriately, post-secondary education is beginning to open up.  Here is the University of Utah Valley's Student Success Story on Reed.

Nutrition researchers to develop new growth charts for children with Down syndrome

The Children's Hospital of Philadelphia (affectionately known as "CHOP") runs a well known and highly regarded Trisomy 21 Program. Such specialist programs take on clinical, education and research roles. Here is news of a current research project that will directly benefit the health care of children with Down syndrome, at a very practical level:

Parents and doctors have known for a long time that children with Down syndrome tend to grow more slowly and are considerably shorter than most other children. But pediatricians needing to record growth milestones at regular office visits have an outdated set of growth charts based on data collected more than 25 years ago. Since that time, there have been major advances in the medical care of children with Down syndrome. In addition, the demographics of the general U.S. population have changed, and children are taller, but also more overweight.

Now researchers at The Children's Hospital of Philadelphia will be measuring children with Down syndrome from birth to age 21 to develop updated growth charts. A four-year, $1.2 million grant from the Centers for Disease Control and Prevention (CDC) is supporting this effort, which brings together experts from the Hospital in growth and nutrition, Down syndrome (also called trisomy 21), and general pediatrics.

Read on for the full text of Eureka's news report about this work (22/4/2010)

The study will produce valuable new clinical tools, but it will also be interesting to see the changes in growth patterns over the 25 years between data collections.

New thinking about molecular genetics and Trisomy 21

An Ohio State University study published in March highlights the complexity of the effects of increased “gene dosage” that comes with Trisomy 21 . The researchers observed that a protein, MeCP2, involved in gene functions that influence cognition is reduced in brain tissue from people with Down syndrome. They then demonstrated that the levels of MeCP2 could be increased in the brains of mouse-models of Down syndrome, by injecting an experimental drug. The relative importance of MeCP2 in cognitive impairment in Down syndrome is not yet clear, although it is known to play a role in Rett’s syndrome.

The broader concepts of gene-protein product pathways acting in paradoxical ways is not really new, but the demonstration that increased gene dosage is not necessarily a simple linear effect in Trisomy 21 is significant for understanding that it is unlikely that there will be a simple “solution” to the anomalies that Trisomy 21 causes, even in isolated aspects of its multiple impacts. Even when we know what the genes involved are and what effects they have, the biological pathways are complex.

The online science news service Eureka reported the research and the interesting background to how the protein was linked to Trisomy 21 here.

Citation
Donald E. Kuhn, Gerard J. Nuovo, Alvin V. Terry Jr., Mickey M. Martin‡, Geraldine E. Malana, Sarah E. Sansom, Adam P. Pleister, Wayne D. Beck, Elizabeth Head, David S. Feldman and Terry S. Elton, Chromosome 21-derived MicroRNAs Provide an Etiological Basis for Aberrant Protein Expression in Human Down Syndrome Brains J. Biol. Chem. 2010 285: 1529-1543.

The abstract is available online from the journal's website.

DS NSW Mothers' Weekend 2010

18th - 20th June 2010
Treetops Resort, Avoca Beach

$245 per person, twin share

This event is open to Down Syndrome NSW members only.

Register by 30th May 2010

Enquiries: Lynn or Judy at Down Syndrome NSW 9841 4401 or support@dsansw.org.au

Click here for a flyer and registration form for Mothers' Weekend 2010

Library Thursday : an Interview with Jennifer Graf Groneberg

The author of Road Map to Holland has recently been interviewed by Literary Mama about life with her growing family in rural Montana:

In addition to writing, she home schools all three boys -- the twins are now 6 and Carter is 11 -- and has become a resource and advocate for families with special needs children. In an interview with freelance writer Sarah Werthan Buttenweiser, (Jennifer) Graf Groneberg talks about how and why she wrote her story, what it's like to move from Internet popularity to print publishing and how she juggles motherhood, homeschooling and her creative life........ Read on to catch up with Jennifer Graf Groneberg 6 years along the Road

Road Map to Holland is available for loan to member from the DS NSW library - you can request it by email: library@dsansw.org.au

DS NSW events April - May - June

The last few weeks have been busy with World Down Syndrome Day, adventures, fundraisers and social happenings. For the next few weeks, we'll be busy with information events. Here's a summary of what's coming up. More details and the links you need to register for each are here, or go directly to the flyers linked below:

• Arabic speaking parents of children with Down syndrome - morning tea, Thursday 29th April, 2010 , 10:00am – 12:30pm, Harris Park.
  Phone Lynn or Miriam at DS NSW, on 9841 4401 or Maha on 0408 205 522 to RSVP
  
  
• Behaviour Management - for teachers, Friday 30th April 2010, Rosehill, Ass Prof Keith McVilly
  
• That’s what friends are for, Saturday 1st May 2010, Rosehill, Ass Prof Keith McVilly
  
  Click here for more details and link to brochure and registration form these two events presented by Ass Prof Keith McVilly
  
  Click here to book online for That's what friends are for at Rosehill
  
  
• Starting School - for parents of children with DS starting kindergarten in 2011 or 2012, Saturday 15th May 2010: Parramatta. Download flyer and registration form.
  
  
• That's what friends are for - a workshop for parents and carers of young people with Down syndrome, Saturday, 29th May, Tamworth. Presented by Susan Jones, Step Ahead Consulting. Download flyer and registration form.
  
  
• How can Proloquo2go assist people with Down syndrome to communicate effectively? A parent forum about a communications application for iPhone/iTouch/iPad, Saturday 5th June: Harris Park. Download flyer and registration form.
  
  Details for events for grandparents and for teachers later in June are to be confirmed.

Centre for Disability Studies

The Centre for Disability Studies (previously the Centre for Developmental Disability Studies) is an academic unit of the University of Sydney. The Centre has recently undergone some changes, including the appointment of its new Director, Prof Patricia O'Brien, following the retirement of the founding Director, Prof Trevor Parmenter.

The website has been considerably re-vamped and upgraded,and includes better access to and information about the NSW Developmental Disability Health Unit (a specialist consultative medical service for people with developmental disabilities) - accessed from the Clinical Services tab.

Well worth a bookmark.

Grace App - another communication option

Grace App is another option for using picture communication on an iPhone, iTouch or iPad. developed by the mother of an autistic child. It is available from iTunes. Click here to read a report press report.

Supported Living Fund for NSW

The discussion paper, A Supported Living Fund for NSW, is an initiative of Family Advocacy - you can download the document here.

Down Syndrome NSW has discussed supported living arrangements with many members over many years, individually and in group settings, and has presented the views of families to government at every opportunity. While a very welcome increase in funding for supported accommodation has materialised in the last 3 - 4 years, families remain frustrated that mechanisms to allows people with disabilities and their families to have more control over and input into supporting them to live away from the family home has not been developed.

This discussion paper raises most of those issues and proposes a solution that is in line with what many families would welcome. Its release is timed to maximise interest in the lead-up to the State election, and follows recent publicity of the no-win situations that families have found themselves in when they can and wish to contribute to their son or daughter's long term support outside of the existing ADHC controlled system of supported accommodation.

It is important to note the distinction that this document, and other Family Advocacy initiatives draw between "supported accommodation" and "supported living" .... it's a lot more than semantics.
And to note that this concept is separate from (although related to) concurrent campaigns for Self Directed Funding, and the campaign for a National Disability Insurance Scheme.

A wedding video ....

Some people have suggested that this wedding video should come with a tissue warning. Tiffany's mother sums up the couple's loving relationship as "better together than either on their own". The video speaks for itself.

(Thanks to Stuart Mills at DSA in London for the link)

Shorten the white knight for no-fault disability insurance

The campaign for a National Disability Insurance Scheme continues to draw attention in the media.

In today's Fairfax press, columnist Adele Horin surveys the role of Parliamentary Secretary for Disabilities, Bill Shorten in putting disability-related issues firmly on the national agenda.

..... Whatever the motive, Shorten has turned a backwater cause into a politically prominent issue ..... Click here to read the column.

CHW School Link: mental health, children and adolescents with intellectual disability

School-Link is a project of the Children's Hospital, Westmead (in Sydney), supporting the mental health of children and adolescents with an intellectual disability by focussing on training and informing the wide range of professionals who might work with them and their families.

The first CHW School-Link Newsletter has just been released, and is available online here.

You can also sign up to an e-list that will mainly be used to circulate future issues of the Newsletter.

Hands Can Talk - new website

Hands Can Talk, the sign language and communication consultancy run by Aileen Ryan has a bright, colourful new website, with information about how sign can be implemented for people with communication difficulties whether their hearing is impaired or not, resources, and workshops all over NSW and interstate.

Free ABA apps from iTunes for April

To mark Autism Awareness Month, iTunes is offering 26 ABA flash card applications, each with 50 - 60 photographs, for free download until the end of April.

The apps are for iPhone and iTouch - we hear that they are beautifully clear photographs, many with no backgrounds. Click here for more information and links to the downloads.

The producers list these features:

- Clear, Colorful, Concrete Images
- Benefits to both Visual and Auditory Learners
- Classical Music with Visual Reinforcement
- Sound can be turned "on" or "off"
- Flash Cards can be shown in order or shuffled
- Concisely Pronounced Audio