Annual Special Children’s Christmas Party

Dream Media & Promotions'

will be held at

10.00 am – 3.00 pm Wednesday 2nd December 2009

Rosehill Gardens, Rosehill

The Sydney Special Children’s Christmas Party is an event for children with special needs, aged 1 – 14 years, and their families, giving children with special needs the opportunity to interact with other children and families that face similar challenges in a fun filled day.

This year’s event will again be a carnival, with lots of rides, roaming performers, games, treats, a full stage show with celebrities and best of all – Santa will be there!

Please return the request form with all areas completed in full – Down Syndrome NSW members can download the form directly from here, or from the DS NSW website or you can contact Priscilla (ph. 9683 1900 or email priscilla@dsansw.org.au ) for an emailed or print copy.

To avoid disappointment, please return your request as soon as possible. All tickets will be sent in September / October 2009.

Ever After Theatre Company: How to Handle a Fractured Heart

A brand new theatre work made by Sydney's longest running ensemble of people living with disabilities, the Ever After Theatre Company

How to Handle a Fractured Heart

Friday 7th August Premiere: 7.30 pm

Saturday 8th August Matinee: 2.00 pm

PACT Theatre

107 Railway Parade Erskinville

Tickets $15/$10 Concession

Ph. Sue: 9555 8988 ext 2; everaftertheatre@gmail.com

• Click here for a flier with further details

Softball NSW: Stanhope Cup

Softball NSW invites people with a disability of all ages to participate in the Stanhope Cup.

Every Sunday from 2 August 2009 till 27 September 2009; 10am start

Blacktown Olympic Park, Eastern Road, Rooty Hill

You are welcome to pass this infomration on to anyone who may be interested

For more information, flier and registration form: please contact Cathy Kerr on 9677 4006 or genmanager@softall.net.au

QSWWA Mid-Year Charity Event: 29th July 2009

The Hughenden
14 Queen Street
Woollahra

6.30 pm, 29th July 2009

Your hosts are Saxon Graham and Paul Jones

• Featuring Luxe Duo: Patrick Franklin and Catherine Jefferies


• Winner of Best Actor, TropFest (in Best Film): Gerard O'Dwyer


• Special Guest: Craig Wing, Patron of Down Syndrome NSW

Major Raffle: NRL football jersey - signed!

Tickets $39.00 (inc meze plate and a glass of house .....)

For further details and to purchase tickets, call 02 9363 4863

Click here to download poster

Supporting Down Syndrome NSW

Down Syndrome NSW is only able to do provide our current range of services with of the financial support of our members, friends and the wider community - we are very grateful to other groups who choose to make us beneficiaries of their fund-raising efforts. Our tghanks to the Queen Street and Woollahra West Association on this occasion.

Morgan's Wonderland - an innovative venture in Texas

One of our members has drawn our attention to the development of Morgan's Wonderland in San Antonio, Texas, an outdoor recreation park, with facilities adapted to accommodate people with a very wide range of special needs (for physical, cognitive and sensory support), enabling them to have fun outdoors, along with family and friends.

The thinking behind the park is not to segregate people with disabilities, but to address current inequities - the brochure states that "...... currently, less than 10% of those with disabilities participate in daily outside recreation". The facilities appear to be very well thought out, and could provide inspiration for the development of more accessible recreation spaces on a smaller scale in local communities, as well providing a very special "one off" experience. Local San Antonio residents will have regular access, as entry will be free.

The large park is part of an even larger leisure and sporting complex, scheduled for opening early in 2010. It has been financed by a generous philanthropic donation, supported by local government funding, and further fundraising.

Take a look at the Morgan's Wonderland website to see the scope and nature of the facilities, and if you happen to be visiting the US, and Texas in particular, you might check it out and report back on how you enjoyed it.

Indoor Netball for children and teens with disabilities: Penrith

Indoor Netball NSW has scheduled a new activity for children and adolescents with disabilities:

Penrith Indoor Sports & Recreation, Jack Williams Drive, Penrith

Fortnightly on Saturdays from 2:30pm – 3:30/4:00pm

Starting in first the week of September and going until March 2010 with a break over Christmas.

Boys or girls with a disability (but not a physical disability i.e wheelchair) from about 8yrs old to early 20s.

Cost - free (uniforms provided)

Players will be coached in the rules of netball and have opportunities to have a game. Experienced coaches will be following a modified netball program as developed by the University of Victoria.

Anyone interested can contact Sue Barnett (secretary of Indoor Netball NSW) on innsw_sbarnett@hotmail.com

Library Thursdays: See, Sign & Say Series

Last year Tara Hearne & Aileen Ryan produced some beautiful books on various subjects with a picture, word and sign on each page. Now they have updated these books with bright and expressive photographs and added more titles. Titles include: Primary School, Colours, Alphabet, Pre-school, Baby Animals, Animals, Objects, Opposites One, Opposites Two, Verbs, Emotions/Feelings, Teen Feelings, Directions, and Food. 

These would be great books for any young child and even nicer for those who are learning Makaton signing. Aileen has kindly donated a set to the Down Syndrome NSW library.

If you want to borrow any of these, just email us.

More City-To-Surf supporters for DS NSW

We now have six runners fund-raising for Down Syndrome NSW in this year's City-to-Surf classic, on Sunday 9th August. Click on their names below to go to the Everyday Hero pages, and pledge your support

• Daniel Fleming
• Allan Le
• Shmulik Kachlon
• Joe Hedger
• Tamzyn Bielecka
• Brad Dewhurst

We thank them for their generosity and the work they are putting into their preparation and performance - run well and enjoy the race!

Workshops in the Arts for People with Disabilities: Granville and Ermington

WAPD holds four weekly drama/dance workshops catering for clients with varying physical and intellectual disabilities. The program focuses on improving and developing skills in movement, drama, dance and singing, and each ninety minute workshop consists of a wide range of theatre sports, games and dances.

Different classes cater for people with moderate to severe disabilities, and those with mild to moderate disabilities.

Click here for the WAPD website for further details of classes at Granville and at Ermington, information about the program and the tutors, and enrolment forms.

Workhshops in the Arts for People with Disabilities is an activity of Riverside Theatres, Parramatta.

Penguin Party: fundraiser in Coffs Harbour, 18th July

Click here to download the flier for The Penguin Party - a fundraiser for Down Syndrome NSW in Coffs Harbour, organised by Leila Sweeney.

If you live on the Mid-North Coast are lucky enough to be visiting - join in the party!

18th July at the Coffs Hotel

Contact host at lu39@live.com.au

Far North Coast: Coffee Morning for Parents, Families, Friends and Carers of people with Down syndrome of all ages

When: Wednesday 19th August 2009

Time : 10.00am - 12.00 pm (Approx)

Where : House With No Steps, Wardell Rd, Alstonville

Gold coin donation requested to help cover morning tea

RSVP : Wednesday 13th August 4pm

Trish 0411 693 127 or email

trish@aydata.com.au

Changes to Carer Payment (care receiver under 16 years).

Along with other organisations, we have been asked to help circulate this information through our networks, by the Australian Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA):

Are you looking after a child under 16 with severe disability or severe medical condition?
If so, you may be interested to know about some changes to Carer Payment that take effect from 1 July 2009.

Carer Payment provides income support to carers who, because of the demands of their caring role, are unable to support themselves through substantial paid work. Carer Payment is income and assets tested and paid at the same rate as other social security pensions.

The most important change is to the way qualification for Carer Payment is assessed. The new method that will be used from 1 July 2009 looks at the carer’s total care load.

Other changes include:

• recognising more situations when carers will receive the payment, such as caring for:

- one child with severe disability or severe medical condition
- two or more children with disability or medical condition
- an adult with disability and one or more children with disability or medical condition

• the payment will be available to eligible carers who are looking after a person for a short period of time, that is at least three months, but less than six months
• more sensitive and generous arrangements for carers of children with a terminal illness
• removing the 63 day limit on hospitalisation
• automatic Carer Allowance for carers who qualify for Carer Payment
• a wider range of health professionals to complete medical forms.

Further information
From 1 July 2009 for information about rates, other available assistance or your potential eligibility you can:

• visit the payment page on Centrelink’s website www.centrelink.gov.au
• telephone Centrelink on 13 27 17 or for TTY service 1800 810 586
• visit your nearest Centrelink office.

Do you have feedback about these changes?
If so, you can email the Department of Families, Housing, Community Services and Indigenous Affairs at carer.reforms@fahcsia.gov.au or write to:

FaHCSIA - Carer Reform Implementation
TOP CE2
PO Box 7576
Canberra Business Centre ACT 2610

All feedback will be acknowledged and carefully considered in our review of Carer Payment over the next 12 months.

Triple P (Positive Parenting Program) - free course for parents of children 0 - 5 with additional needs

A FREE group course for parents with children aged 0-5 years old with additional needs

Practical solutions to common parenting problems
The Triple P positive parenting program can help you find ways to deal with difficult behaviours and support your child.

Triple P is an evidence-based program (backed up by over 25 years proven clinical research) so it works for most families.

Triple P can help you:

• create a stable, supportive, harmonious family environment


• teach your children skills to get along with others


• deal positively, consistently and decisively with problem behaviour


• encourage behaviour you like


• develop realistic expectations of your children and yourself
  take care of yourself as a parent.

Every Wednesday, starting 5 August 2009 (four-week program), 5:30 – 7:30pm

Waverley Council’s Family Day Care Centre
25 Ebley St, Bondi Junction 2022

RSVP by Wednesday 15 July

CONTACT Paul Berchtold: PHONE 9310 6300 ; EMAIL paul.berchtold@dadhc.nsw.gov.au or steve.cato@dadhc.nsw.gov.au

FACILITATORS Steve Cato (Speech therapist, DADHC) and Paul Berchtold
(Case Manager, DADHC), whose areas of expertise include working with children
with additional needs and challenging behaviours.

Click here to download the flier

Supported by Waverley Council and NSW Dept Ageing, Disability and Home Care

Numicon Training in Sydney, Brisbane and Canberra: August 2009

Numicon is a multi-sensory approach to teaching mathematics for all children, but especially for those with learning difficulties. Margi Leech will be in Australia providing training for parents and for teachers during August.

Please note these are not DS NSW events - any enquiries should be directed to the contacts given in the relevant fliers.


SYDNEY

Workshop 1 - for all parents, teachers,

9.30 am – 4.00 pm, Monday 3 August, 2009


Workshop 2 - a workshop for training teachers to become Numicon trainers
9.30 am – 1.00 pm, Tuesday 4 August, 2009

Venue for both days: St Lucy’s School, Wahroonga

Registrations close 27th July 2009

Click here for the Sydney flier for further details



CANBERRA

Workshop 1 - for all parents, teachers, educators
9.00 am – 3.45 pm, Wednesday 5 August, 2009


Workshop 2 - a workshop for training teachers to become Numicon trainers
5-8 p.m, Wednesday 5 August, 2009

Venue for both events:Turner School, Turner, ACT

Registrations close 27th July 2009

Click here for the Canberra flier for further details


BRISBANE

Workshop 1 - for all parents, teachers, educators
9.30 am – 4.00 pm, Friday 7 August, 2009

Workshop 2 - a workshop for training teachers to become Numicon trainers
9.30 am – 1.00 pm, Saturday 8 August, 2009

Venue for both events: Grange Bowls Club Brisbane

Click here for the Brisbane flier for further details

Registration for Brisbane workshops: via Numicon NZ website only.

Contact Margi Leech at Numicon NZ: margi@numicon.co.nz or via www.numicon.co.nz

Performers for Professional Integrated Dance Performance Company

From Accessible Arts Newsletter, June 2009:

Call Out : Sydney : Open : Expressions of interest sought by Sydney based movement teacher, choreographer and divisor of new dance work from artists wishing to develop a new integrated Dance Company.

This new group will work on a weekly basis, progressively developing skills in physical performance and material creation as led by Margot Politis and other professional guest collaborators. The intention is to work over time towards regular performances of created material. These performances may include workshop showings, participation in short-works performance programs and eventually stand-alone company performance.

The short-term purpose is to provide professional working and performance opportunities for local artists interested in collaborating in an inclusive and accessible setting.

Click here for further information and contact details.

Restructure of NSW Government Departments and agencies - where will Disability Services fit?

Under the restructure announced recently by the Premier, the existing 160 NSW Government agencies are combined to create 13 ‘super-departments’ which in turn are grouped into 6 ‘Policy Groups.’ There remain 23 Ministers assigned to various policy areas within the super-departments.

The NSW Department of Ageing, Disability and Home Care has been amalgamated into the NSW Department of Human Services, as part of the Social Development Policy Grouping.

The Department of Human Services will be headed by Ms Jennifer Mason, formerly the Director General of the NSW Department of Community Services. The Department of Community Services (DoCS) and the Department of Housing will also be grouped in Human Services.

View a diagram of the new super agency alignment.

Sources: PWD E Bulletin, Issue 54, June 2009; NSW Carers ebulletin, June 2009

Enhanced protection for the rights for people with disability

From PWD E-Bulletin, Issue 54, June 2009 (a publication of People With Disability Australia Inc):

On Thursday 25 June 2009, the Attorney General, the Hon Robert McClelland MP and the Parliamentary Secretary for Disabilities and Children’s Services, the Hon Bill Shorten MP, announced two major initiatives for human rights for people with disability:

• the Disability Discrimination and Other Human Rights Legislation Amendment Bill 2008 was passed by both houses of the Federal Parliament;
• the Australian Human Rights Commission will be given specific responsibilities for monitoring Australia’s implementation of the international Convention on the Rights of Persons with Disabilities (CRPD).

Human Rights Commissioner and Disability Discrimination Commissioner Graeme Innes welcomed these initiatives as “milestones on a long road to equality and human rights for people with disability and their families”.

“Human rights for people with disability present some of the biggest emerging human rights issues in Australia and internationally, and it's great to see today’s announcement recognising that," Commissioner Innes said.

PWD is particularly pleased at the formal recognition given to the CRPD as part of the human rights framework within Australia. The Australian Human Rights Commission can now consider the rights contained in the CRPD and report to Government on how it is being implemented.

PWD will be seeking further information on the practical application of this initiative and providing information in future editions of E-Bulletin.

Conference papers now online - Carers in Action in NSW biennial conference 2009

Carers NSW hosted a two day biennial conference on carers issues in June.

The focus of the conference was on leading practice in carer support, health and community care. Targeted at service providers, keynote speeches were made by John Watkins, CEO of Alzheimer’s Australia NSW, Associate Professor Diana O’Halloran, Chair NSW General Practice Council, Dr Kristy Muir, Social Policy Research Centre of the University of NSW and Elena Katrakis, CEO Carers NSW.

Conference papers, 22 in all, are now available online.

Source: Carers NSW ebulletin, June 2009

To subscribe to Carers NSW ebulletin, go to the Carers NSW website, and click on the "Information and Resources tab, and then "ebulletin". Open any of the ebulletins listed and enter your email address in the subscription panel.

School holiday activity: come and try basketball and other sports

Special Olympics Sydney Inner West Region

Come and Try : Basketball (and other sports)

Tuesday, July 14th

Debbie and Abbey Borgia Community Recreation Centre & Steel Park - Illawarra Road, Marrickville

Click here to download the flier for further details.

It is essential to book in to join in. Contact: Kristen Fitzpatrick, Ph: 0424 185 565 or email: kristenf@specialolympics.com.au by Friday 10th July at the latest.

Sydney Inner West - new dance opportunity

Special Olympics Sydney Inner West Region introduces

a co-educational dance facility that presents an exciting opportunity for people with intellectual disabilities to learn different genres of dance with structure & technique along with fun & friendship

You need to register with Special Olympics to join in the regular class

Class Timetable: 4.30pm – 5.30pm; and 5.30pm – 6.30pm

Styles covered in both sessions include Ballet, Jazz & Hip Hop.

Age: from 7 years up

Presbyterian Church Hall, 443 Great North Rd

Abbotsford
(The hall is at the back of the church - opposite Abbotsford Public School)

Tuition $5 per dancer

For further information & registration for Special Olympics contact:
Kathleen Collins, Sports Co coordinator for Special Olympics Sydney Inner West region:

kath2012@tpg.com.au or 0405 100 753

DADHC Focus Groups on self-directed funding: July 2009

This information has been circulated at very short notice (and two events have already been held), but we know that families are interested in self-directed funding and will value an opportunity to put their views to DADHC.

The NSW Department of Disability, Ageing and Home Care is holding focus groups across NSW to speak with carers about self-directed funding.

The focus groups are being held over the next month and more respondents are needed to participate. Attendees must receive DADHC services directly or through an NGO service. They will also be paid to attend and can be reimbursed for travel costs.

The meetings will be held on the following dates:

Broken Hill, 3 July, 9.00 am to 12pm

Parramatta, 6 July, 9.00 am to 12pm

Penrith, 8 July, 10.00 am to 1.00 pm

Gosford, 14 July, 11.00 am to 2.00 pm

Lismore, 16 July, 1.00 pm to 4.00 pm

Wollongong, 20 July, 10.00 am to 1.00 pm

To be a part of the focus groups contact Wendy Wride from The Allen Consulting Group:

Wendy Wride Corporate Services
The Allen Consulting Group
Level 12, 210 George Street,
Sydney NSW 2000

02 8272 5100
wwride@allenconsult.com.au

Library Thursdays: Puberty resources

Some of the most popular items in the library are the puberty resources. Special Girls' Business and Special Boys' Business by Fay Angelo, Heather Pritchard and Rose Stewart are excellent resources to explain to girls and boys with intellectual disabilities the changes happening to their bodies and how to manage them (most of the Girls' one concerns periods). Other resources by the same authors include Secret Girls' Business and Secret Boys' Business for all girls and boys. They have more details in a more complex manner than Special Girls' and Boys' Business but can be good for parents to explain things to their children with Down syndrome as well as for older, more accomplished readers. Now the authors have created More Secret Girls' Business. It is promoted as a companion volume to Special Girls' Business. It includes more details about the information in Special Girls' Business and physical and emotional changes. It also seems to be presented in a clearer and less busy way. 

For girls with Down syndrome starting puberty, I would recommend Special Girls' Business but for parents who want simple ways to explain and discuss things and for older girls who want more information, I would recommend More Secret Girls' Business. I look forward to More Secret Boys' Business which I hope is coming out soon.

Other puberty resources in our library:

Janet gets her period

Talk to me: A personal development manual for women and girls with Down syndrome and their parents Available Online 

Down's Syndrome Scotland also have some good resources online

These resources are available from our library, just email us.

Family Planning NSW also loans out many resources to carers and service providers for people with disabilities. The above resources and many others are available.

DS NSW e-Update: July 2009

The online edition of the Down Syndrome NSW Update, July 2009 is now available here.

Auslan flashcards, game cards

In addition to teaching and publishing, Hands Can Talk produces a range of resources to assist families learning to use sign and maintaining sign skills to support communication. The latest products are card sets, designed to teach signs in various categories, suitable to be used as flashcards or for memory games, and an Animal Lotto game incorporating photos and signs.

The Hands Can Talk website is currently undergoing a comprehensive overhaul, and will be relaunched shortly. The new products will be available through the new website, but meanwhile, contact Hands Can Talk by phone or email for further information on formats and costs.

Contact details for Hands Can Talk:

Phone 02 9824 8332

Fax 02 9824 8112

Email aileen@handscantalk.com.au

10th World Down Syndrome Congress - 7 weeks to go

A reminder that the 10th World Down Syndrome Congress will be held in Dublin, Ireland from 19th - 22nd August 2009 - that's just seven weeks away, but you still have time to register. We know that a number of NSW families are planning to be there, and two DS NSW staff members are attending.

The Congress has a comprehensive website, providing full details for registration and programs, including the first International Synod of People with Down Syndrome, adressing the topics of Employment Opportunities and Living in the Community:

The theme for the Congress is "Lifelong Living and Learning". We have chosen this theme to stress the fact that people with Down syndrome and their families develop right throughout their lives. We are constantly encountering new experiences and personal demands, in circumstances that can be both challenging and fulfilling for each individual, family and community.

Playschool, Tuesday 7th July

ABC TV perennial Play School will feature Matilda, who has Down syndrome, on Tuesday 7th July, in the morning episode (a different episode will be broadcast in the afternoon time slot).

Post School Options Expos: for Students with Disabilities

North Sydney Post School Expo

Date: Thursday 6 August 2009

Time: 3.00pm - 5.45pm

Venue: Dougherty Community Centre 7 Victor St, Chatswood

Find Out About

• Transition to Work
• Community Participation
• Open Employment Options
• Australian Disability Enterprises

For more information contact:

Sue Werner on 9413 3400

Eileen Lyons on 9416 1087

Timothy Hart on 8878 0514


Post School Options Expos are also scheduled for:

7 July 4.00 – 7.00pm, Windsor HS - Mulgrave Rd McGraths Hill

3 August 4.00 – 7.00pm, Crestwood HS - Chapel Lane Baulkham Hills

11 August 4.00 – 7.00pm, Nepean HS

Source: Disability Education and Employment News: No. 10, Vol 5.

"Making friends: Strategies for supporting friendship development"

A workshop for parents of a pre teen or young adult with Down syndrome

9:30am - 4:30pm
Saturday 19th, September 2009

The Commercial Club
618 Dean Street
Albury

Cost - $55 per person, adult siblings free (Includes morning tea, light lunch, GST)
Guest Speaker: Liz Dore, Relationships and Private Stuff

This workshop will give parents ideas and strategies when supporting their child to:

• Feel good about themselves


• Build communication skills


• Recognise different types of relationships


• Develop positive and long term friendships


• Think about others while taking care of themselves

The workshop will include discussion, group activities and reviewing resources.

• Click here to download flier and registration form

Enquiries to Siena O’Brien at carereducation@dsansw.org.au or phone 9683 4333

Research participants required - Bond University, online survey

The latest issue of Infoxchange Australia's Disability News includes an invitation from Melissa Reardon, a postgraduate psychology student at Bond University in Queensland for parents to participate in an online research survey:

The aim of the study is to explore levels of parental well-being of parents raising a child with a disability. Parents will be required to answer questions relating to the behaviour of their child, their feelings as a parent, the quality of the relationship with their child, and service provision. The benefit of the study is to assist in the development of resources and support services for parents of children with disabilities and to further expand research into this area.

Click here for the Infoxchange item, with a full description of the project and links to the student, her supervisor and the relevant ethics committee.

Library Thursdays: Getting Started!!! Using Visual Systems to promote Communication

We have previously blogged about the benefits of using visuals to aid communication for people with Down syndrome. Dolly Bhargava and Carson Street School in Perth have produced a manual and DVD on the basics of creating and using visuals, Getting Started!!! Using Visual Systems to promote Communication. The book shows many examples and gives many tips to help with creating visuals as well as to help with communication. It is a useful resource for teachers as well as parents. They have sent us copies of their book to give away to anyone who would find it useful. If you would like a copy, please come and pick one up, email us or call our office and we'll send it out to you. We can post it out with any library books you may want to borrow.

Research on sleep in children with Down syndrome - online survey

A Scottish research student at the University of Glasgow is seeking parental input on sleep disorders and children with Down syndrome or an Autism Spectrum Disorder (aged 5 - 11 years). The DSA (UK) is co-operating with recruitment through their website, and Jane Macquarrie has emailed DS NSW directly to enlist further assistance:

My name is Jane MacQuarrie and I am researching parent's views about their child's sleep problems, in parents of children with Down Syndrome or an Autism Spectrum Disorder. I am undertaking this research as part of my Clinical Psychology training at the University of Glasgow in Scotland.To complete my research, I am asking parents to complete a questionnaire on-line.

Click here for a flier about Jane Macquarrie's research

Click here to go to the letter of invitation and to the online survey

DADHC 2009 - 2010 Budget

The NSW Dept of Ageing, Disability and Home Care has published a summary of its budget for 2009 - 2010 following release of the NSW State Budget last week.

Further detail of funding for services in regional NSW is summarised in this press release, and detailed in a series of more specific releases (dated 16th June 2009) that can be accessed here.

National Disability Services (NDS) NSW budget commentary is available in its 17th June News Update.

The Council of Social Services of NSW ( NCOSS) 2009 - 2010 budget analysis is here.

Interview with a celebrity sibling

Eva Longoria Parker (of TV series Desperate Housewives) recently spoke to the UK Daily Mail's Gabrielle Donnelly about her sister, Elizabeth, who has Down syndrome. Click here to read the interview.

Which workshop was that?

It's good to see so many opportunities to tap into others' expertise and experience. We have posted about a number of workshops and seminars recently - here is a summary and links to those occurring in the next few weeks to help you keep track:

Dating Skills Workshops - adults 25+ (Saturday 20th and 27th June. Relationships and Private Stuff )

Workshop for teachers in special education (Wednesday 1st July. Down Syndrome NSW)

Updates in Developmental Disability Health (Thursday 9th July, 2009. Centre for Developmental Disability Studies, University of Sydney)

DADHC workshops available to Northern Metro families (various locations during July, Dept Ageing Disability and Home Care, Behaviour Intervention Service, Metro North)

After school - what then? (various metropolitan locations, late July. Family Advocacy

Planning for the Future (Saturday 8th August, 2009. Family Advocacy)

Healthier Lives – pathways to better health for people with intellectual disability (Sydney City, Tuesday 11 August, NSW Council on Intellectual Disability)

Library Thursdays: Facing the Crowd

Facing the Crowd: Managing other people's insensitivities to your disabled child by Deborah Fulwood & Peter Cronin has been around for many years. It was first published in 1986 and the reprint in our library was done in 1997. But despite increased inclusion of people with Down syndrome in society, it is still relevant in 2009.  Many new parents are bewildered how to respond to people's remarks about their child. Fulwood & Cronin look at the types of remarks made as well as the types of people making them (loved ones, people you need on side, people you are stuck with and other children). They relate other people's experiences and give strategies and set responses to use.

This is a practical, easy book to read and recommended for anyone who feels weighed down by other people's remarks.

Fiona Place's article in this quarter's newsletter about the use of the R word is also relevant and helpful.

To borrow this book or if you have any queries about the library, call or email us.

Family Advocacy Workshop: Planning for the future

8th August - Sydney

Presenter: Jeremy Ward

One of the most common concerns for families is the uncertainty about the future for their family member with disability.This workshop will identify the ways families can plan for and provide a secure future.

It discusses ideas about creating a vision, making a plan and developing a circle of support.

This workshop will be helpful for a parent, adult brother, sister, other relative or friend of a person with developmental disability.

For further details, contact Family Advocacy directly:

Phone: 02 9869 0866 or 1800 620 588 (NSW non metro callers)
Email: workshops@family-advocacy.com
www.family-advocacy.com

Revised DADHC policy on respite capacity

The NSW Department of Ageing Disability and Home Care issued a draft policy "Maintaining Respite Capacity" in late 2008 that drew so much criticism that the Minister withdrew it for revision in light of the commentary (see these posts from 10th August 2008; 27th August 2008; 16th October 2008). The revised policy has now been issued, and can be downloaded from the DADHC website here (scroll halfway down the page to April 2009, Maintaining Respite Policy).

A number of associated documents about the revision process are also available from this web page, with these comments:

DADHC has reviewed and taken into consideration the many submissions made in relation to the two draft policy during the six week consultation process.

The Minister requested that the draft policy be re-drafted to take account of this initial feedback. The policy reflects the concerns and suggestions made by many people including carers, advocates and service providers. It reflects how we can work together to support families who have made the difficult decision that they can no longer support their family member at home. The Department acknowledges that any family who has had to make such a decision has not done so lightly.

DADHC is currently seeking responses to a discussion paper, "New Directions for Respite Services in NSW", with submissions closing next week, on Friday 26th June (see this post for more information and links).

DADHC workshops available to Northern Metro families

Department of Ageing, Disability & Home Care (DADHC) Metro North Regional Behaviour Intervention and Support Team provides a calendar of workshops designed to be easily accessible to a variety of people working in the area of behaviour support work, from direct care staff to managers, from families to clinicians.

Workshops that could be relevant to families of people with Down syndrome offered in the July calendar include:

Makaton Basic Workshop

9:00am - 4:30pm Monday 13th July 2009

Achieve Foundation Eastwood, Level 4 – 2 Rowe Street, Eastwood

Working with Challenging Behaviours

9.30 am - 1.30 pm Wednesday 15th July 2009
DADHC Office Level 2 – 93 George Street, Parramatta

Wills & Trusts. Planning for the Future
9.30 am - 12.30 pm, Friday 24th July 2009
DADHC Office Level 2 – 93 George Street, Parramatta

Music Therapy for People with Disability
10:00am - 12:00 pm Tuesday 28th July 2009
The Golden Stave Music Therapy Centre, Kingswood

Families / non paid carers will be given priority where possible. In most instances morning / afternoon tea will be provided. Sessions are at a cost of a gold coin donation, to cover refreshments and materials.

Contact Down Syndrome NSW on 9683 4333 or email info@dsansw.org.au for a calendar with full details of each workshop and booking procedures (which are handled directly by the Behaviour Support Team).

NSW Council for Intellectual Disability Forum on Healthier Lives

– pathways to better health for people with intellectual disability

9.30am – 4.30pm, Tuesday 11 August 2009

Sydney Masonic Centre,
66 Goulburn Street,
Sydney

Cost: $30 for service providers and professionals, free for people with intellectual disability, family members and carers. Lunch and refreshments will be provided

Keynote Speaker: Ass Prof Nick Lennox, Director Queensland Centre for Intellectual and Developmental Disability; President of the Australian Association of Developmental Disability Medicine

An important health forum discussing health outcomes for people with intellectual disability, strategies for improving people’s health and an introduction to NSW CID’s Health Fact Sheet Project.

For further information, an up-to-date program and registration brochure, visit : www.nswcid.org.au , and go to the “Future Events” menu; or phone NSW CID on 9211 1611

Library Thursdays: Competition and The Madonna in the Suitcase

The arrival to the library this week of a New Zealand mother's story* written to her 40+ year old daughter with Down syndrome coincided with the arrival of a box of donated new books. This, in addition to the flux of sibling stories recently, made me think we should run a competition to collect some of our own stories.  We'd like you to send in a story about your family member or friend with Down syndrome and go in the running for free books. There are various current fiction titles for all ages.  Send your stories in to Down Syndrome NSW Attn: Library,  P.O. Box 2356, North Parramatta 1750 or email to library@dsansw.org.au and we will select winners and mail prizes. Your stories may be published in whole or excerpted form unless you request otherwise. 

* The Madonna in the Suitcase by Huberta Hellendoorn is a mother's love story to her daughter with Down syndrome, Miriam, who became an excellent artist. It tells the story of migrants finding their place in New Zealand, having a child with Down syndrome in the 60s, encouraging independence and dealing with and deciphering health issues. The photos and Miriam's beautiful paintings really add to the story. This book may be of interest to those interested in artists with Down syndrome as well as those wanting to read about a family who dealt with many issues.

Other links about The Madonna in the Suitcase:

Arts Aeoteroa 

Blog from Dunedin NZ reviewing The Madonna in the Suitcase

To borrow this book or any other, email us or call the DS NSW office (02)9683 4333.

New blog on sign language, particularly its use by people with disability

sign language: Auslan Makaton Key Word signing is Aileen Ryan's new blog, Aileen has run her business Hands Can Talk for some years, and it will be familiar to many families and professionals in NSW with an interest in people with disabilities such as Down syndrome. The Hands Can Talk website is currently undergoing extensive revision. It will be re-launched shortly, and linked from the blog, of course.

In the new blog, Aileen will post about issues to do with everyday use of sign, teaching and learning sign, and its use within education here in NSW. She can answer questions through reader comments, and debate can follow.

Aileen has many years of experience as a sign teacher, author, workshop presenter, and as the mother of four grown up children, including 16 yr old Elysha, who has Down syndrome.

After school - what then?

A Family Advocacy workshop about navigating the post school system for families of school students in years 11 or 12 or planning ahead!

NORTH SHORE: Tuesday 28 July

PENRITH: Wednesday 29 July

CAMPBELLTOWN: Thursday 30 July

FAIRFIELD: Friday 31 July

The focus of the day will be on the system of funding and support - Commonwealth and State Government responsibilities and non government service providers approved to support school leavers, including:

• achieving a positive future for young people leaving school
• what other young people have achieved with their funding
• levels of funding and how it is allocated
• the different forms of support arrangements that are available
• how to make informed choices about the future
• government guidelines and how they affect school leavers.

Cost to attend: $10.00 per person (GST inclusive and covers morning tea, lunch and materials)

Please phone to register before Thursday 16 July 2009

DS NSW members who have attended this workshop previously highly recommend it.

Phone: 02 9869 0866 or 1800 620 588 (NSW non metro callers)

Email: workshops@family-advocacy.com

www.family-advocacy.com

Cricket Day for people of all-abilities: advance notice

SATURDAY 15 AUGUST, 2009

Cricket NSW is conducting a skills development and games day for people with a disability. There are no prerequisites and people of all ages and abilities are welcome to join in the fun!

Where:
SCG Indoor Centre, Driver Ave, Moore Park (Parking - MP1 on Driver Ave and entry to Indoor Centre via Venue Services at the main gate of the Sydney Football Stadium)

Time:
Skill development: 10.30am - 12.00 noon
Lunch: 12.00pm -1.00pm
Game: 1.00pm - 3.30pm

Cost:
$30 per person and all equipment supplied (bring your own if you wish!)

Click here for a registration form

For more information please contact:
Donna Little at Cricket NSW on email: donna.little@cricketnsw.com.au

Graduation tribute

It's graduation time in US high schools. There have been a number of media reports about students with Down syndrome graduating.

This one, a tribute to his daughter Jillian, from Paul Daugherty, a sports writer with the Cincinnati Enquirer, is featured in Patricia Bauer's News Commentary blog.

Library Thursdays: Thicker Than Water

Not long after the arrival of Brian Skotko and Susan Levine's great book for teenage siblings of people with Down syndrome(Fasten your Seatbelt), a new book, Thicker than Water: Essays by Adult Siblings of People with Disabilities (edited by Don Meyer, Woodbine House 2009) has been published. The stories are about people with various disabilities. There are several by siblings of people with Down syndrome and most are siblings of people with some intellectual disability. Many of the authors work in the disability or health sector. Brian Skotko, Kate Strohm (founder of Siblings Australia), Rachel Simon (author of Riding the Bus with My Sister), and Jennifer Owensby (creator of The Teachings of Jon documentary) all contribute to this book. It is an interesting look into the feelings of sometimes an overlooked group who, most likely, as is noted in the introduction, will have a longer relationship with their brother or sister than anyone else including their parents. The essays cover a range of experiences, feelings and reactions. It gives much to relate to for siblings and much to think about for parents in how they deal with all the family and plan for the future.

Also arrived this week is My Sister Alicia, the beautiful picture book written from a sibling's point of view about her 6 year old sister with Down syndrome, mentioned in an earlier blog. This book would be great for primary school aged siblings.

Related links:

Siblings Australia

Sibling Support Project

Other sibling resources by age:

Let's Paint the Octopus Red for young siblings of babies with Down syndrome

The Worst Best Brother picture book for siblings of pre-schoolers with Down syndrome

Oh Brother! for older primary to early high school aged siblings

Fasten your seatbelt for high school aged siblings

If you are interested in borrowing any of the resources, just email us.

Commentary on recent research into cancer prevention

Here are two media articles following up reports of the research into cancer prevention related to Down syndrome (See this post from 22nd May) - the first gives more background to the study, the second is a commentary on how we value people with disabilities, Down syndrome in particular.

A medical puzzle yields cancer clue, Boston Globe June 1 2009, Stephen Smith

Remember that every life has value, Statesman.com, June 03, 2009, Ashley Sanchez

Updates in Developmental Disability Health

Proudly presented by Centre for Disability Studies, The University of Sydney

This seminar will focus on some of the recent developments in the assessment and management of health conditions in people with developmental disability. Current trends in health service provision for people with developmental disability in Australia and overseas will also be explored.

The seminar is open to health care professionals, professionals in disability services, and family carers.

Keynote speaker:

Dr Henny van Schrojenstein Lantman-de Valk
Maastricht University, The Netherlands

9.00 am – 5.00 pm, Thursday 9th July, 2009

Charles Blunt Conference Room
Royal Rehabilitation Centre Sydney
59 Charles Street, Ryde, 2112

Non members of CDDS $132.00
Financial members of CDDS $121.00

Click here to download the brochure including the day's program and registration form.

Closing date for registration Thursday 2nd July 2009

All enquiries to CDDS: Margaret on (02) 8878 0500 or E-mail: cdds@med.usyd.edu.au

PWD budget analysis

Peak disability organisation People With Disability has published a Special Edition E-Bulletin, Issue 53, on the Australian Government Budget 2009/2010

This E-Bulletin talks about:

• Social Security Payments
• Disability Services and Programs
• Employment
• Health
• International Aid

iPhone application useful for people with communication impairment

Patricia Bauer reports about new Apple iPhone application that allows the device to be used as an assistive communication device at much less cost than existing dedicated devices.

See here for a previous post about an Auslan sign language application.

June 2009 Update; Winter 2009 Newsletter; Speak UP! Issue 33

Down Syndrome NSW monthly and quarterly publications are released today. Web editions are located here:

• DS NSW Update, June 2009
• DS NSW Newsletter, Winter 2009
• Speak UP! Issue 33

Print editions will be posted to subscribers this week.