Federal Budget 2017: media commentary

Today's media is, of course, full of news and opinion on the Federal Budget delivered last night. These links, compiled by People with Disability Australia, include mainstream media comment on budget measures likely to directly impact people with disabilities:

Budget 2017 sees Medicare rebate freeze slowly lifted and more funding for the NDIS: experts respond, The Conversation, 9 May 2017

Federal budget: Medicare levy and taxes to fully fund National Disability Insurance Scheme, The Guardian, 9 May 2017

Medicare levy slug for NDIS worthwhile, PM, AAP/Yahoo 7, 10 May 2017

2017 budget a 'responsible plan' that will lead to better days: Turnbull, Breakfast, Radio National, 10 May 2017 (audio file)

Welcome change of tack in health education and housing, but vilification of people who are unemployed continues,  Australian Council of Social Services, 9 May 2017

Added 11 May 2017:

'I'm not saying no to Gary': Treasurer reveals personal struggle behind NDIS budget decision, The Age, 10 May 2017

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The Australian Government provides information on budget measures by each portfolio - this page gives links to those relevant to the Department of Social Services, likely to be relevant to many people with disabilities and their carers:

Budget 2017-18
Australian Department of Social Services, 10 May 2017

• Portfolio Budget Contents
• Media releases
• Fact sheets

The Australian Government Budget website also has more information about the Budget 2017-18.

Women’s Health Learning Circle

Image description: text reads 'The Women's Health Learning Circle' Family Planning NSW is starting a Women’s Health Learning Circle for women with intellectual disability aged between 45-64 years of age. Image description: A woman in a blue top, smiling, looking up to her left. The Learning Circle will be a place for women to learn about their bodies and the changes they will experience as they age. The Learning Circle will run once a week for four weeks and be led by experienced reproductive and sexual health educators. If you know anyone who would be interested in attending The Learning Circle please forward the information on to them. Places in The Learning Circle are limited so it is important people register to attend the group. Some of the things you will learn about are: menopause health checks for you private body parts relationships how to keep your body healthy The Women's Health Learning Circle will meet once a week for 4 weeks. Where: Family Planning NSW,  328 - 336 Liverpool Road, Ashfield When: 2.00 - 4.00 pm Thursday 8 June 2017 Friday 16 June 2017 Thursday 22 June 2017 Friday 30 June 2017 If you would like to be part of this group contact: Abi Monaghan P: 02 8752 4388 E: healthpromotion@fpnsw.org.au It is important to contact us before 2 June if you want to be part of this group.

NDIS information event, Burwood (Sydney)

NDIS: Community Information Session 

10.00am - 12.00pm or 6.00pm - 8.00pm 27 April 2017 -  Burwood NSW

• designed to help people with disability, as well as their families and carers, get ready for the National Disability Insurance Scheme that will commence in your area on 1 July 2017
• what is the NDIS and how does it work?
• am I eligible for the NDIS?
• what will happen if I am made eligible?
• what kind of support can I access through the NDIS?
• RSVP by 24 April

'Voices from a silent journey': International Journal for Direct Support Professionals

Voices from a silent journey
Melodie Cook, International Journal for Direct Support Professionals, Vol 6, #4, April 2017

... People with intellectual disabilities are often socially withdrawn whether they communicate verbally or not. This has nothing to do with their ability to contribute but has lots to do with our social world which tends to value verbal communication which is fast paced ...

This free Canadian journal is also available in French, and all back issues are available online here. Each issue deals with a single topic.

You Can't Ask That: reminder of series return tomorrow, ABC TV

Several people with Down syndrome will appear in the new series series:

You Can't Ask That returns for a second season of life-affirming, insightful, hilarious and refreshingly inappropriate television. 

... You Can't Ask That asks groups of misunderstood, judged or marginalised Australians the awkward, inappropriate or uncomfortable questions you've always wanted to know the answers to, but have always been too afraid to ask.

You Can't Ask That Series 2 starts on ABC TV 1, 9.30 pm Thursday 6 April 2017 and will be on iView (Episode 1, Blind People, is available now).

New quarterly newsletter from Down Syndrome Australia

'Welcome to Down Syndrome Australia’s first newsletter, bringing you key highlights from our work, information on upcoming events and opportunities to share your views and experiences. Down Syndrome Australia was established in 2011 as the peak body for people with Down syndrome in Australia. 

Our vision is an Australia where people living with Down syndrome are valued, reach their potential and enjoy social and economic inclusion. '

You can subscribe to receive the newsletter online via the Down Syndrome Australia website - scroll to the bottom of the page to enter your email address.

Sydney workshops on Microboards

Introduction to Microboards

1 April 2017 - West Ryde (Sydney) 

and
Family Mentoring Session

2 April 2017 - West Ryde (Sydney) 

Developmental Disability WA

A microboard is a small group of people, typically committed family and friends who form an incorporated association and work with the person to help them plan and achieve their goals for a good life. 

Depending on a person’s particular needs, a Microboard’s role can include assisting with coordinating support services, finding and keeping employment and facilitating friendships. 

This workshop will introduce you to what a microboard is and how they can be set up and run. 

• The orgnisers advise that NDIS participants might be able to use NDIS funds to attend these workshops. 

Health matters

Twenty Things I Want My Health Care Provider to Know

A series of videos from the Adult Down Syndrome Center, published on their Facebook page. The quickest way to reach them is via this link, or via the 'Videos' tab in the left column of the ADSC home page :

 Before We Get Started - published October 2016. A 'welcome to the series', includes a brief history of the Adult Down Syndrome Center. (3m 6s)

It Is More Than Just Language - published 13 February 2017. It is about language but it is also a philosophy on interacting with people with Down syndrome. (1 m 10s) 

Common Characteristics of People with Down Syndrome - published 16 February 2017. All is not Down syndrome. (3m 33s) 

Life Expectancy and Two Syndromes - published 19 February 2017. People with Down syndrome are living much longer than in the past and despite the same genetics from years ago, the lives of people with Down syndrome look much different than they did in the past. (7 m)

• More health related information and resources are available from the Adult Down Syndrome Center's website. 

Keratoconus and Down’s syndrome

Stephanie Campbell, Down's Syndrome Association (London), 3 January 2017
Keratoconus is a condition in which the cornea, the transparent ‘window’ at the front of the eye, grows abnormally thin and into a cone shape, causing distorted vision.

... Until recently, there was no treatment for early stages of keratoconus, and nothing to be done about it until vision was affected, when contact lenses can be a real help. In cases of severe progression, scarring of the cornea meant that a corneal transplant was the only means of providing reasonable vision.

Now, there is a new treatment becoming available, called collagen cross-linkage therapy that can halt the progress of the abnormal growth and prevent sight deteriorating ...

• Keratoconus and Down’s syndrome: Rachel’s story,  DSA (UK), 27 January 2017

Lack of Specialist Clinicians Failing Australians with an Intellectual Disability
Simon Wardale, Probono News, 3 October 2016
Bluntly speaking, complex and challenging behaviours are not very well understood, even within the disability sector, and that situation is borne out by the training – or lack thereof – available for Australian practitioners ...

Jackson Lab Helping 11-Year-Old With Rare Disease In Search For Cure

Stephen Singer, Hartford Courant, 3 January 2017
... At age 4, Talia Duff, who was born with Down syndrome, began to slowly lose motor milestones that were hard to achieve initially. Doctors believed her motor skills were delayed because of her Down syndrome ...

Free NSW forums on NDIS - Every Australian Counts

The Every Australian Counts team will be hitting the road from March – May presenting NDIS information forums in the NSW regional areas where the NDIS will be rolling out from July.

Topics include:

• What the NDIS is, why we need it and what it means for you
• The changes that the NDIS brings and how they will benefit you
• How to access the NDIS and get the most out of it 

These free forums are designed for people with disability, their families and carers, people working in the disability sector and anyone else interested in all things NDIS.

Please register for tickets and let Every Australian Counts know about any access requirements. All the venues are wheelchair accessible and Auslan interpreters are available if required. Please contact us when you book if you have specific access requests.

We’ve locked in the following locations:

Casino 8th March
Grafton 9th March
Coffs Harbour 14th March
Port Macquarie 15th March
Wagga Wagga 23rd March
Orange 5th April
Dubbo 6th April
Nowra 2nd May
Wollongong 3rd May
Albury 9th May
Broken Hill 16th May

We will be holding Sydney metro forums too – we’ll have those dates to you ASAP.

Click on a link above to register online now!

News and commentary on the NDIS (59)

The official NDIS website provides access to documents, and up to date information about how the NDIS works, and NDIS events such as local workshops and webinars.

NDIS and Me
People with Down syndrome and/or their families and carers can join the closed Facebook Group, NDIS and Me, for discussion specifically about the NDIS and people with Down syndrome.

Disability Loop - a way to find out more about the National Disability Insurance Scheme (NDIS). Through Disability Loop you can:

• Find a great selection of resources relating to the NDIS
• Find out how the NDIS is working for other people
• Have your say about the NDIS
• Keep up to date with news and events about the NDIS

Disability Loop is a project funded by the NDIS. It is run by, and for, people with disability and their allies.

Two other closed Facebook groups (only members can see the posts) that you might find useful for answering particular queries are:

• NDIS Grassroots Discussion - a large group run for and by people with all kinds of disabilities, and welcoming of carers - the administrators are very experienced in managing discussions that can become robust at times, as criticism of the NDIS is raised
• the newer and smaller I Love NDIS started recently to promote discussion individual's successes in putting their plans together and implementing them. 

Counting what counts surveys 
Julia Farr Association
We have had a significant response to the first Counting What Counts survey but it's not too late to have your say.

If the NDIS is to be really helpful in people’s lives, it needs to be shaped in line with what people living with disability need to live a rich and meaningful life.

Currently, much of the NDIS development is focused on how service providers make the move to the NDIS. This creates a risk that the NDIS market will reflect what providers need, not what people and their families need.

Counting What Counts is a series of surveys to find out more about what people living with disability, their families and supporters, want. JFA Purple Orange will publish the survey results, so people can use the information to make sure the NDIS is implemented well.

2016 NDIS supporter survey
Every Australian CountsTell us what you think about the NDIS.

People with disability, their families and carers and the service provider sector must have an NDIS that’s the best it can be.

That means letting our decision makers know what’s working, what isn’t and what needs to be done to make it better.

We’ll be releasing our first Every Australian Counts Community Report Card in December and we need you to shape it.

This is your NDIS. Fill out this simple survey to make sure you have your say.

Information, linkages and capacity building

National Disability Insurance Scheme, 9 November 2016
The NDIS has released the Information, Linkages and Capacity Building Framework (ILC). The ILC includes:

Personal capacity building – this is about making sure people with disability and their families have the skills, resources and confidence they need to participate in the community or access the same kind of opportunities or services as other people. 

Community capacity building – this is about making sure mainstream services or community organisations become more inclusive of people with disability ...

The ILC Toolkit is designed to help organisations get ready for ILC - it was released on 21 November 2016.

The National Disability Insurance Scheme: a quick guide

Luke Buckmaster,  Parliamentary Library (Australia), 1 September 2016

This five page 'Quick Guide' from the parliamentary Library could be a useful for those who are hearing about the NDIS for the first time, either as participants, family members, carers or potential service providers or support workers.

Our Choice Our Voice: Talking About The NDIS

Community Disability Alliance Hunter (CDAH), 11 November 2016
A video about the NDIS and the importance of peer support. Made by people with intellectual disability for people with intellectual disability. 9 m 30s

National Disability Insurance Scheme struggling to meet enrolment targets, report shows
Norman Hermant, ABC News, 14 November 2016
The first quarterly report from the National Disability Insurance Scheme (NDIS) transition phase shows the scheme came nowhere near to hitting its original estimates for enrolees ...

Rocky start to NDIS transition period

Every Australian Counts, 16 November 2016

The first quarterly report covering the NDIS transition phase has been released. Here’s what you need to know.

Accessible Arts Newsletter: November 2016

Accessible Arts November news is full of great announcements and opportunities for the arts and disability sector in NSW:

• InternationalDay of People with Disability
• Sydney New Year's Eve for everyone
• Don't DIS my ABILITY 2016
• 2017 Artist with Disability Fellowship
• Performing Arts Summer School 2017
• Events
• Featured arts + disability videos
• Auslan Interpretation of eNews
• Accessible Arts | Facebook | Twitter | Instagram

Health matters

Improving Mental Health in Children with Autism and Intellectual DisabilityBelinda Ratcliffe (guest blogger), NSW Council on Intellectual Disability, 26 October 2016

Did you know about 70% of children with Autism have mental health issues like depression, anxiety or challenging behaviour?

Positive Cardiometabolic Health for People With Intellectual Disability resources

3DN at the University of NSW has developed a set of  resources and tools on Cardiometabolic Health for People with Intellectual Disabilities,  including postcards to take to your doctor.

Cardiometabolic health of people with intellectual disability differs from members of the general population. The resources aim to inform medical practitioners, those who work with or care for people with intellectual disability, people with intellectual disability, and prescribers of psychotropic medication on the affects on specific health conditions of people with intellectual disability.

• Click here to download resources on a range of topics related to cardiometabolic health.

What a patient with a learning disability would like you to know
Emily Smith, British Medical Journal 2016; 355: i5296, 5 October 2016
Emily Smith has Down’s syndrome and is an Expert by Experience at the University of Nottingham. After a visit to an emergency department (A and E), she was referred to her general practitioner. Here she contrasts the interactions she had with the different healthcare professionals ...

Service, Support and Success: October 2016 issue

Service, Support and Success is a monthly international journal for direct support professionals, published in Canada. Each issue features a single substantive article focussed on a practical aspect of direct support.

As more people manage their own support via the National Disability Insurance Scheme, they will be interested in locating such good quality resources themselves, to establish good practice,  and as education and training resources for the professionals they employ.

It is available free via email subscription or through a website (link below). Here is the link to the latest issue:

In Case of Emergency, Please Read: Ideas and Strategies for Supporting People with Intellectual  Disabilities Receiving Emergency Care 
 Yona Lunsky and Jacques Lee, Service, Support and Success, Vol 5, issue 10, October 2016
Adults with developmental disabilities visit the hospital emergency department (ED) as often as some of us go to the dentist. In fact, they go twice as often as adults without developmental disabilities (DD). We all know the “drill” when it comes to the dentist, but just how much do you know about what to expect out of an emergency department visit? This article offers some practical tips about how to make emergency visits as good as they can be, and also outlines some steps we can all take to reduce the likelihood of having to go to the hospital in the first place. Because, let’s be honest; like the dentist, none of us want to go the hospital more than we have to...

Answers to FAQ’s about the journal

1) The journal is intended to be widely distributed; you do not need permission to forward. You do need permission to publish in a newsletter or magazine.

2) You may subscribe by sending an email to dhingsburger@vitacls.org

3) We are accepting submissions. Email article ideas to either the address above or to anethercott@handstfhn.ca

4) We welcome feedback on any of the articles that appear here.

• Link to back issues of Service, Support and Success on the Vita Living Services website, here. Each issue is now available in both English and French. 

World Mental Health Day: 10 October

Today, 10 October, is World Mental Health Day. NSW Council on Intellectual Disability on Facebook published a timely reminder of it's print resources on 5 October 2016:

Worried. Sad. Angry. Scared. Upset. 

We all have these feelings sometimes. If these feelings last 2 weeks or more or keep coming back it maybe a mental health issue. 

NSW CID has Mental Health Fact Sheets - good info and and great conversation starters around what can be a sensitive topic. 

Ask CID can also help with information and referral to Mental Health services 

Ph 1800 424 065 

Mental Health Day is near, so maybe it's time to check in on your Mental Health or the health of someone you know.

• NSW CID Health Fact Sheets can be downloaded here 

Down Syndrome NSW resources on mental health in people with Down syndrome

• Dennis McGuire’s Mental Wellness seminar now available online
• Mental Wellness in Adults with Down Syndrome, Dennis McGuire and Brian Chicoine, Woodbine House (DS NSW library collection)
• Down Syndrome: When to Worry about Mental Health and What to Do About It! A Guide for Parents and Care-Givers, Robin Friendlander and Peter Johnson (DS NSW library collection)

NSW Mental Health Commission: October is Mental Health Month

Mental Health Month NSW is part of a national mental health promotion campaign held throughout October each year. The timing of the campaign centres on World Mental Health Day, which is marked each year on October 10. 

For further information visit the Mental Health Association NSW website.

Down Syndrome Australia calls for better information to support new pre-natal testing

Statement from Down Syndrome Australia, 5 October 2016

Down Syndrome Australia welcomes the current discussion in the media about pre-natal testing, prompted by the release of a BBC2 UK documentary involving British actress Sally Phillips who is the mother of a child with Down syndrome, exploring issues around pre-natal testing for Down syndrome.

Over the last few years the capacity to test for genetic conditions such as Down syndrome before birth has increased. It is now possible to detect various chromosomal conditions pre- natally through a blood test also known as a non-invasive prenatal test (NIPT).

It is the view of Down Syndrome Australia that this advance in medical technology must be accompanied by appropriate information to support families in making informed decisions about testing and how to respond to the results. Feedback from the Down syndrome community suggests that in most cases the information provided to families is out-dated or focused on a very negative portrayal of what it is like to have a child with Down syndrome.

“It is critical that decision-making following a diagnosis of Down syndrome is informed by accurate and relevant information and made freely after active consideration of one’s own values and beliefs” stated Angus Graham, Chairman, Down Syndrome Australia.

Down Syndrome Australia is a non-profit organisation whose primary aim is to represent and progress the needs, interests and aspirations of people with Down syndrome and those who support them throughout Australia.

Since its establishment, Down Syndrome Australia has worked closely with its member organisations, the eight State and Territory Down Syndrome associations in Australia, on issues related to pre-natal testing including by developing a national resource available on its website, to ensure that expectant parents in Australia are provided with contemporary, balanced and up-to-date information about Down syndrome and prenatal testing.

Down syndrome Australia will continue to advocate for better pre-natal information and support as part of its commitment to improving the lives of people with Down syndrome throughout Australia.

uni 2 beyond: Open Day

uni 2 beyond supports people with an intellectual disability to study courses for interest and take part in university life. Studying for interest is also called “auditing”.

Classes will begin in March 2017 and you can take part for 2 years, with a possible extension to 3 years.

Who can apply: People with an intellectual disability who would like to experience university.

How to be part of the Open Day and apply for uni 2 beyond: 

• Register to come to our Open Day on 31 October 2016  at Sydney University, Camperdown, and learn more about uni 2 beyond. You can bring a friend or support person if you like.
• You can apply for a place after you have attended the Open Day. Please note that there are only limited spaces available. 
• Please read the information in the Information Pack to decide if uni 2 beyond could be right for you. 
• If you would like to come to the Open Day, please send us the Registration Form on page 7 of the Information Pack
• You can email Jemima at Jemima.MacDonald@sydney.edu.au if you have any questions. 

International news and perspectives

Nothing without people with disabilities

Catia Malaquias, director of Starting with Julius and the Attitude Foundation - two Australian organisations seeking to change attitudes to disability through media initiatives - and a director of Down Syndrome Australia, is currently at the United Nations in Geneva, to deliver an address at the launch of the Global Alliance for Disability in Media and Entertainment (GADIM).

The alliance 'was created to encourage actions to increase and improve representation of persons with disabilities in the media. Here you will find resources to help create more inclusive media productions' ...

The full text of Catia's speech (3 October 2016) can be read on the Starting with Julius website, here

... In my view, the positive engagement of the media in the realisation of human rights for people with disability is as critical and could be as powerful as the social implications of the right to inclusive education – as recently amplified by the Committee of the Convention of the Rights of Persons with Disabilities. 

Only with the concerted, sustained and positive engagement of the media can social inclusion of people with disability and the realisation of their human rights occur in a proximate timeframe. It takes much longer to change habits than to form them – people with disabilities have been habitually excluded for centuries ...

Out of sight: the orphanages where disabled children are abandoned
Naomi Larsson, The Guardian, 26 September 2016
NGO Disability Rights International has campaigned for institutions to be closed for years but despite progress, there are still shocking instances of abuse ...

Women and girls with disabilities are equal rights holders, not ‘helpless objects of pity’ – UN rights committee
United Nations News Centre, 30 August 2016

... “Policies for women have traditionally made disability invisible, and disabilities policies have overlooked gender,” said Theresia Degener, a member of Committee member in a news release issued by the Office of the UN High Commissioner for Human Rights (OHCHR).

“But,” she added, “if you are a woman or a girl with disabilities, you face discrimination and barriers because you are female, because you are disabled, and because you are female and disabled.”

To address this issue, the Committee has issued guidance for the 166 states that have ratified the Convention on the Rights of Persons with Disabilities to help them empower women and girls with disabilities and to enable them to participate in all spheres of life on an equal basis with others, as set out expressly in Article 6 of the Convention ...
Lurie Institute for Disability Policy spotlights healthcare inequities for women with intellectual disabilitiesJulian Cardillo, Brandeis Now, 30 August 2016
Why is it that nearly half of women with intellectual disabilities are not receiving the appropriate medical care they need and deserve to detect cervical cancer?
Life with a disability in Britain 'has not improved since the London Paralympics'BT, 5 September 2016
The majority of people with disability polled said there has been no change in the way others treat them.  Four out of five disabled people don’t think Britain is a better place to be disabled since the London 2012 Paralympics.

In a poll of 1,000 disabled people more than 70% said there had been no change in the way people act towards them, including the way people talk to them, language people used, and the awareness people had of their needs ...

(UK) Disability hate crime convictions surge by 40 per centJon Stone, The Independent (UK), 9 September 2016
Prosecutions for disability hate crimes surged by more than 40 per cent last year compared to the year before, official figures show ...

New resources from Down Syndrome Australia

Down Syndrome Australia has published three new resources, all free to read and/or to download from the DSA website:

Ageing and Down Syndrome
- a 30 page booklet

Down syndrome in the workplace for employees  
- a 12 page booklet

Down syndrome in the workplace for employers  
- a 20 page booklet,

News and commentary on the NDIS (54)

This post is focused on the recent difficulties experienced by both participants and service providers attempting to use the new NDIS 'portal', the subject of an urgent review. Links to other information about the NDIS will be posted separately:

NDIS and Me
People with Down syndrome and/or their families and carers can join the closed Facebook Group, NDIS and Me, for discussion specifically about the NDIS and people with Down syndrome.

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Added 2 September 2016:
NDIS technical delays 'unacceptable', says draft COAG document

Bridget Brennan, AM (ABC Radio), 2 September 2016 (audio file)

The COAG Disability Reform Council is meeting today to discuss major IT setbacks that have slowed the roll-out of the National Disability Insurance Scheme.

AM has seen a draft communique from today's meeting, which concedes that the NDIS is behind schedule and that the delays have been "unacceptable".

The new NDIS online portal has been plagued with problems and has meant thousands of people haven't been able to get care plans approved. The peak body for disability services says the stuff-up has caused considerable stress to disabled Australians.

NDIS myplace portal explained

Every Australian Counts, 31 August 2016

On the same day the NDIS began full transition a new payment portal, myplace was released. It’s been getting some pretty bad press since then, here’s why ...

Media Statement from Minister Porter – NDIS MyPlace portal, 31 August 2016
In the National Disability Insurance Scheme’s first month of transition from trial to full scheme, the NDIA experienced difficulty in implementing the new NDIS MyPlace payment portal.

As a result there were disruptions and delays in payments being made to a group of providers and participants through the payment portal.

I have been working closely with the NDIA, and now the successful payments to providers and participants have increased from around 70 per cent to a 96 per cent success rate.

Once satisfied the main technical issues had been addressed, the Assistant Minister for Social Services and Disability Services and I ordered an urgent independent review into the MyPlace portal.

This review began on 5 August and is expected to be completed and provided to me shortly.

Based on initial advice from PwC, as well as a short-lived technical issue experienced by bulk service providers, there was also an issue around the adequacy of information provided to users of the payment portal which led to errors in inputting necessary information. That situation is improving rapidly and significantly ... read the full statement here

NDIS IT Debacle Blamed On Technical Glitch
Wendy Williams, Probono News, 31 August 2016
The “IT debacle” that hampered the roll out of the $22 billion National Disability Insurance Scheme has been blamed on a “short-lived technical issue” and a lack of information provided to users ...

MyPlace roll-out should have been staged, says minister

Michael Owen, The Australian, 30 August 2016
A staged transition of a new computer system and preparation for inevitable glitches would have saved parents of disabled children and their therapists from frustrating disruptions to the $22 billion National Disability ­Insurance Scheme, Assistant Disabilities Minister Jane Prentice says.

Ms Prentice, the minister ultimately responsible for managing the ­operational side of the NDIS, has just finished another round of meetings across the country as the federal government scrambles to restore faith in an ambitious national rollout that involves ­assessing and approving individual plans for 430,000 ­people during the next three years.

Health matters

Action on the Turnbull government commitments on healthNSW Council on Intellectual Disability eNews, August 2016

As reported in our blog (click here) the Coalition, Labor and The Greens all made useful election commitments on the health of people with intellectual disability.

We have now seen the first actions on the Government’s commitments in new mental health guidelines issued to Primary Health Networks by the Department of Health. Some of the guidelines point out the need to specifically consider people with intellectual disability in consultations and design of programs. 

The guidelines are here. 

We also now have constructive relationships with some key people in the Department of Health and Health Minister Ley has agreed to meet with some local parents in her electorate to hear about their experiences with the health system. 

All of this is just a start but a big step forward from where we were with the Department of Health six months ago.

Onychomycosis -Toenail Fungal Infection 
Amanda Wojciechowski, Adult Down Syndrome Center,11 August 2016
Onychomycosis or toenail fungal infection is common among individuals with Down syndrome (DS). Toenail fungal infections occur due to the weak immune system of individuals with DS but also are more likely to proliferate if one has a minor skin or toenail injury, dry cracked skin on the toes or sweaty feet due to prolonged closed-toe shoe wear ...

• This article was first published on the Adult Down Syndrome Center Facebook page 1(1 August 2016) - a great source of new health information, and reminders about well known health matters. The paper cited above has been added to the Center's website as well.

Hidradenitis suppurativa (HS) and Down syndrome (DS): Increased prevalence and a younger age of hidradenitis symptom onset

George Denny and Milan J. Anadkat, Journal of the American Academy of Dermatology, September 2016 (published online 22 August 2016)
Hidradenitis suppurativa (HS) occurs in approximately 1% of the general population.1 It is characterized by recurrent inflammatory nodules, sinus tracts, and scarring, most commonly in the axilla and groin. The origin is unknown, but is most likely related to inflammation and immune dysfunction, combined with extrinsic factors.2 The relationship between HS and Down syndrome (DS) was noted in 1977 by Dvorak et al.3Since then, scattered case reports have been published but the mechanism underlying this association remains unidentified. Details regarding the relationship between HS and DS, such as effect on disease incidence and age of onset, are also lacking in the literature ...

• The full text of the article is available free online