more responses on Kingsdene and long-term support published today

Letters to the Editor, Sydney Morning Herald, today:

Greatest disability is in the funding
How is it that the Anglican diocese with all those churches, all their affluent congregations, all their aged-care facilities and all those rich private schools with their swimming pools, science blocks, ovals and cricket pavilions cannot fund part-time residential care for a handful of children at Kingsdene (Letters, November 6)?

Some community.
Jane Salmon
Lindfield

Parents of children with disabilities lose access to Kingsdene, the state's only specialised boarding school, because governments are prepared to resource only options that keep children at home. Around the corner at the King's School, government funds and parents' fees keep children at boarding school and no one says they should be at home.

It is hard to avoid the conclusion that governments prefer to save money and collect votes than provide genuine support for people with disabilities. Perhaps the King's School could consider putting government to shame by throwing the school a lifeline.
Bronwen Elliott
Ashfield

Some bloke pays $23 million for a family house and Kingsdene cannot find enough funds to stay open (''Murdoch forks out $23m to head for the hills'', November 6). Something is warped in our society.
Trevor Smith
Culburra Beach

Andrew Pesce (Letters, November 6) supports a national disability insurance scheme. Unfortunately, the Federal Government has different priorities. What we really need, it says, are 12 new submarines by 2025.

Estimates of the cost of the Future Submarine Program range from $20 billion to $36 billion, even without likely blow-outs. Defence of the realm being what it is, the Government has no intention of telling us why this particular procurement is so essential. Might it be the solution to the boat people problem?

Perhaps the Collins class clunkers that will be replaced can be used as demountable classrooms as part of the education revolution.
Greg Thomas
Annandale

A proposal is before Leichhardt Council to renovate three unoccupied houses in Lilyfield for people with an intellectual disability. At a committee meeting this week, one councillor said ''this seems a lot of money for such a small benefit''. It seemed lost on her that families such as ours have saved the public purse millions of dollars by caring for our children at home (in our case for 32 years).

Luckily, others on the council have more enlightened positions.

But if a young, intelligent, well-informed local government representative can still hold such views, families such as ours who have been hoping the ethical compass is finally turning slightly in our direction might have a lot longer to wait.

The problem is, we can't; our daughter will outlive us by many years.
Peter Rix
Annandale

Response to Kinsdene closure

Yesterday's editorial in the Sydney Morning Herald says, in response to Anglicare's decision to close Kingsdene School (this post links to the first story to appear on Monday this week), that "fundamental reform of the entire disability support system is needed.

The news and editorials throughout the week have provoked several letters, that you can read here (Wednesday) and here (today), all of them arguing for increased funding for Kingsdene in particular, for services in general, and for implementation of a National Disability Insurance Scheme. Dr Andrew Pesce's letter reiterates the full support of the Australian Medical Association, of which he is federal President.

Vintage by the Sea

Shabby Chic Market

9 am - 4 pm, Sunday

15th November 2009

Cronulla Masonic Hall,

43 The Kingsway

CRONULLA

Entry by donation

(Proceeds to Down Syndrome NSW)

Browse and buy from our stalls ..... furniture, vintage fashion, collectibles, garden and homewares

Enquiries: Robyn 0425 243 520

Library Thursdays: Other Australian Websites and Newsletters

In addition to the books, videos and kits available in the library, we also have newsletters from many organisations including Down syndrome associations throughout Australia and the world. Articles from these are referred to from time to time in our newsletter but many of these are available from the associations' websites as well as other interesting things.

Down Syndrome Victoria's journal, Voice . The current issue, Spring 2009, includes articles on: Teaching new skills and building competence, Healthy lives and informed choices. You can have both! by Joan Guthrie Medlen, "Says who?: Life stories and people with Down syndrome by Amie O'Shea, Story books by Kirsten Deane (about creating books for your child), Tim's story by Kate Calwell.

Some of the past issue's articles are available on their website from the Journal menu item (this will show up in the menu on the left after clicking Down Syndrome Victoria from that menu and then Publications even though nothing will appear on the Publications page. (I think the site is still developing).)

Down Syndrome Western Australia has recently launched their new website. Their newsletter, The Diary is available online. The site has other interesting informtion and there is also a link to the developmental disability library in WA--ACTIV.

Down Syndrome Association Queensland's newsletter, DSAQ Digest is not available on their website but the latest issue in our library has articles on; Health checks, World Down Syndrome Day 2009, Queensland Companion Card, Siblings, and Vision & Glasses.

ACT Down Syndrome Association's newsletter is also not online, but their website is up to date.

Down Syndrome Tasmania's newsletter of Winter 2009 had articles about its 25th birthday, Tim's Story, and Two choices: I hope I made the right one- an article about putting inclusion above winning in a baseball game.

Down Syndrome Society of South Australia produce their own informational books and these can be purchased from their site.

Foundation 21 (South Australia) also has a few pictures and news items from their events.

Down Syndrome Association of the Northern Territory do not have a website, but they do have a newsletter. In their September 2009 edition, articles include a Report from the World Down Syndrome Congress, a History of Down Syndrome and tips on Introducing the computer to a child or student.

We have links to all the Australian associations (their location, website and contact details) on our website.

Threatened closure of school highlights system gaps ... again

There have been numerous stories, and an official inquiry into the provision of adequate care and support for people with severe disabilities and their families, and another threat is reported in the Sydney Morning Herald this morning:

Harrowing choice put a loving mother to the test
Louise Hall, Sydney Morning Herald, November 3, 2009

Exhausted and depressed after devoting her life to caring for her severely disabled son Niall, Anita Cain took him to a respite centre - and left him there.
Abandoning him to the state's welfare system 3½ years ago was the only way the single mother could get the support she needed.

A rare genetic condition means Niall is deaf, blind in one eye and developmentally delayed, but Ms Cain's pleas for a permanent placement in supported accommodation were rejected until she relinquished day-to-day responsibility for him to the Department of Community Services.

''I only got one weekend every two months respite … all I wanted was more regular, longer breaks, but they wouldn't find anywhere for Niall to go unless I officially abandoned him,'' she said.

In NSW 32 children were given up to the Department of Community Services in the two years to June and this could worsen, with the state's only boarding school for severely disabled children facing closure.

Click here to read the full report.

While we are aware of at least one other school in NSW that does offer boarding facilities for children with disabilities, and that it is highly valued by the families of its students, the threatened closure of Kingsdene might well put pressure on the capacity of any other similar school, as well as on the families of Kingsdene students.

Scrapheap Adventure 2010 registrations now open

You can register now for the 2010 Scrapheap Adventure via the link here.


And if the Scrapheap Adventure concept has captured your interest, you can follow this discussion thread for some inside information.

New addition to the Blogroll

The Blogroll is the list of blogs that we check into regularly - scroll down the right hand column of this page and you'll come to it.

We've just added Welcome to Illinois, views from Matt, one of many dads who have chosen to blog about his thoughts and experiences arising from being the father of a child with Down syndrome, and one without.

Scotland on Sunday: opinion on UK research and media

This article from a Scottish Sunday paper was also prompted by the media response to the UK statistics released last week.

The upside of Down's
Dani Garavelli, Scotland on Sunday, 01 November 2009

Almost every day, I pass a little boy with Down's syndrome coming home from school.

As he bounces along the road, his face beaming, he is so cute I want to pick him up and take him home. At my local church, too, there are special masses in which adults with DS play a leading role. They are among the most moving services I've been to, perhaps because those involved throw themselves so unreservedly and so unselfconsciously into proceedings.

Of course, I realise these brief encounters give me no real insight into what it would be like to raise a child born with this condition. Moreover, harping on about how "loving" and "unaffected" people with DS are, is borderline offensive, suggesting as it does that they are a homogeneous mass rather than individuals with distinctive personalities like everyone else. Click here to read the whole article.

(Ed - I had to read the third last paragraph a couple of times to be sure what it said. A quick Google search showed that Claire Rayner's patronage of the Down's Syndrome Association (in London) was immediately terminated when she made the remarks referred to.)

From disbelief at Down diagnosis to joy and delight

Prompted by the media response to UK research published last week, the Sun-Herald investigated local statistics, and published this report today. It was accompanied by a delightful photoraph of Ian and Jo Smith with their children:

From disbelief at Down diagnosis to joy and delight
by Jessica Mahar, Sun-Herald (Sydney) 01/11/2009

Ian and Jo Smith knew their third child would have Down syndrome from the time Ms Smith was 15 weeks pregnant. A 12-week screening showed a one-in-six risk but the couple wanted to be sure.

When the result came back positive, Ms Smith, 43, could hardly believe the results. "I thought I was going to be sick, I had no idea how I was going to cope with it and I probably cried for three days and then I didn't cry any more. Then we just started our research."

Their daughter, Catherine Rose, was born three weeks ago.

"I went through that, feeling guilty about the impact it would have on my other children and who would look after Cate when we've gone," said Ms Smith, from Sydney's eastern suburbs.

"My five-year-old saw me crying a lot. He heard me saying the words Down syndrome so I told him his sister has got something called Down syndrome and it means she might take longer to do things and she might need more help from us."

The number of diagnoses of Down syndrome in NSW has increased as women have delayed motherhood.

But the number of babies born with the syndrome has dropped as prenatal screening has improved and more people have chosen to terminate their pregnancies.

In 1995, there were 140 diagnoses of Down syndrome and, of that number, 113 ( 81 per cent ) were born. The rest were either stillbirths, neonatal deaths or terminated.

Figures from 2005 reveal 211 cases, with 73 babies born (a 35 per cent birth rate).

A 20-year-old woman has a one in 1411 chance of having a baby born with Down syndrome. Ten years later, at 30, the risk rises to one in 959. At 40 it is one in 84 and at 45 it's one in 32.

Down Syndrome NSW information and services director Jill O'Connor said she was worried people didn't have enough time or information when they were told the news.

"We're not convinced that people are getting all the information that they might like to have when they are making these decisions," she said.

"We want them to know what Down syndrome is and we'd also like to see people not being made to make quick decisions."

Ms O'Connor has a 24-year-old son with the condition, who was diagnosed at birth. "Nearly every child who is diagnosed with Down syndrome is going to be a wanted baby," she said. "People are still being given very negative information and very often the assumption of health professionals and family professionals is if you have a diagnosis you will terminate."

Andrew McLennan from the Royal Australian and New Zealand College of Obstetricians and Gynaecologists said screening had improved but it needed to be offered to all.

"This is all about choice," he said. "It's certainly not about running a program seeking to increase the terminations for abnormalities."


Genetics counsellor Mona Saleh, who works for the Centre for Genetics Education, said the statistics showed a change of demographics in prenatal testing.

"There are more people being screened now than 10 to 15 years ago," she said. "It was only older mothers who were being offered testing."

The Smiths say they would not have it any other way.

"We would not swap this journey," Ms Smith said. "I wouldn't even swap the Down syndrome because our family has just now come together.

"I don't even see the Down syndrome when I look at her. She's the joy of my life."

This information was presented in a table, highlighting the increased diagnoses and termination rate:

The 1995 birth rate of foetuses diagnosed with Down syndrome.
 140 cases of Down syndrome were diagnosed.
 113 babies were born with the disorder.
 27 terminated, stillborn or neonatal death (vast majority terminated)

The 2005 birth rate of foetuses diagnosed with Down syndrome.
 211 cases of Down syndrome were diagnosed.
 73 babies were born with the disorder.
 138 terminated, stillborn or neonatal death (vast majority terminated).
Source: NSW Mothers and Babies reports

"ADHC"; revised supported accommodation document; new supported accommodation places

Since the creation of the "super-department" of Human Services, the Department of Ageing, Disability and Home Care is no longer a government "department", and will be known as NSW Ageing, Disability and Home Care (ADHC). Its CEO is Jim Moore, who was previously called the Director-General.

ADHC has published its revised protocols for allocating supported accommodation places in non-government services that are ADHC operated and funded. Read the new ADHC document here: Allocation of places in supported accommodation policy and procedures　

These extracts briefly address the most common enquiries we receive from families, about availability and the process for accessing ADHC supported accommodation (of course the document includes a great deal more detail):

4.1 Guiding principles ..... (4) A person’s needs are more likely to be met effectively by making early contact with DADHC, before any crises occur. Carers may contact the regional Information, Referral and Intake teams at any time to discuss their circumstances and to explore the support options available to them.

5.1 Requesting a supported accommodation place ..... Where a person with a disability is eligible for and seeks supported accommodation, the case manager will confirm the person’s eligibility for supported accommodation and consider all other support options with the person and his or her family/support person/guardian. Once this has occurred, the case manager will submit a written request for a place on the Register of Requests for Supported Accommodation. The person with a disability will be notified in writing that his or her request has been added to the register.

5.1.1 Indication of future service need ..... A person may indicate to DADHC if they consider they will have a future need for supported accommodation. This information will be recorded by DADHC and may be used in future planning. When a client notifies DADHC that their indicated future need has become an immediate need services will be offered on the basis of assessed need, priority and available places.

5.7 Creating a shortlist [for a vacancy].....

(d) Priority and in order:

High:
• homeless or effectively homeless, or
• at imminent risk of homelessness – the person’s support system has broken down, or
• the person’s own support needs have increased and the family is unable to continue to provide support in the family home, or
• the person’s primary carer is older than 65, or who has ageing related support needs, or
• the person is in receipt of emergency funded support and has applied for supported accommodation, or
• the person or placement is at risk, or
• a person requesting to move from one supported accommodation place funded by DADHC to another supported accommodation place funded by DADHC where the current place does not adequately support a person’s living arrangements or social connections, or
• a person exiting from the Integrated Services Project (ISP).　

Moderate:
• A person whose current living arrangements are not likely to be sustainable or whose current placement is showing early signs of breaking down.

Low:　
• For any other reason not mentioned above.


The continued roll out of new supported accommodation places under the Stronger Together initiative is announced in this Ministerial media release (8th October).

Library Thursdays: Up Up and Away DVD and Manual

Following on from last week, another DVD has come into the library about adults with Down syndrome working towards their goals. The Up Up and Away project recently launched its DVD and manual showing how to set up a program that enables adults to identity their interests and goals and set up the supports that make attaining those goals possible. The DVD is inspiring to watch. It shows the change that occurs for the young adults throughout the program. And the young people, their family and support teams all give their views.

Also new to the library is another book which may help some people with Down syndrome follow their interests or reach some goals. It is the Next Chapter Book Club (Woodbine House, 2009). We have blogged before about this concept, but now everything you need to know to set up your own book group is contained in this book. It also explains the benefits

and talks about the groups already in existence. We still hope to get funding to set up a trial group, but now you don't need to wait for that, just borrow this book and get started.

To borrow this or the Up Up and Away program DVD and manual, just email us.

UK research widely reported: increased diagnoses, steady birth rate

This paper published online this week by the British Medical Journal, on the observed increase in prenatal diagnosis and a steady rate of live births while termination rates remain very high in the UK, has produced widespread reporting and reaction in the British and international press, including various family responses:

Trends in Down’s syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: analysis of data from the National Down Syndrome Cytogenetic Register

Joan K Morris, professor of medical statistics, Eva Alberman, emeritus professor,
Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London

The media is well summarised, linked and collated in Patricia Bauer's commentary, Disability News (go to entries dated 28th October 2009).

ABC TV's Q and A on National Disability Insurance Scheme

On Thursday 29 October at 9.30 pm, the ABC TV 'Q&A' program will feature Bill Shorten and Tony Abbott.


Written and video questions are now being taken. Please take a moment to show your support by posting a question about the National Disability Insurance Scheme on the Q&A website.

The program will be available as a Vodcast following the broadcast.


Visit the National Disability Insurance Scheme website here.

Photo Project

An invitation to men and women with Down syndrome:

Would you like to have a photograph taken with your boyfriend or girlfriend, partner or family?

At your home, in a local park or at a wedding or commitment ceremony?

Liz Dore, from Relationships and Private Stuff, is hoping to collect photos of a diverse range of couple, including those with intellectual disability. They would be used to create a set of A4 and A5 laminated cards to be used in relationships counselling and educational workshops. You would receive a photo enlargement and digital frames.

If you and your partner are interested, please contact Liz Dore, Relationships Counsellor and Educator: 0416 122 634 or email lizdore@bigpond.com

www.relationshipsandprivatestuff.com

Relationships and Private Stuff: 2 workshops

Friendship & Dating Skills Workshops

For people with intellectual disability, aged 25 – 50 years

3pm – 6pm 21st and 28th November

Woodstock Community Centre, 22 Church St, Burwood

Each group participates in two 3 hour sessions held over two consecutive Saturdays

Activities and DVD’s will be used for structured education sessions in a group. Informal activities to reinforce learning will include going out to a local café or pub.

The cost is $120 and includes the two 3 hour sessions.

BYO money for outing. (Discount $100 for pensioners & low income earners).

For enquiries contact Liz Dore 0416 122 634 or lizdore@bigpond.com

To find out more and for directions www.relationshipsandprivatestuff.com

A practical approach to teenage private stuff - for parents

This workshop gives parents strategies for teenagers who have an intellectual disability or ASD and difficulties relating to others. It will include practical ideas to support them to have healthy relationships. Resources and discussion will focus on:

Puberty and self esteem
Relationship and communication skills
Appropriate and positive ways to sexual expression
Sex, consent and safe sex
Protective behaviours

10 AM – 1 PM Saturday 5th December 2009

Australian Technical College, Bridge St, Coniston (Wollongong)

Workshop cost $60 for one or $100 for couple.

To register send cheque and form to Liz Dore PO Box 1060 Burwood North 2134 before 30/11/09.

For enquiries ring 0416 122 634 or email lizdore@bigpond.com