NDIS and Me - closed Facebook group

Social media, including Facebook has allowed people with disabilities and their families unprecedented access to the support of others with similar interests around the world, all the time, very inexpensively. 

That freedom also comes with a degree of vulnerability, so higher levels of privacy, and the oversight of administrators makes closed Facebook groups more secure for all. 

We have just passed the second anniversary of the implementation of first trial sites for the national Disability Insurance Scheme, and the full roll out is on its way. It has been called the biggest social change in Australia since universal health care, in the form of Medicare, was introduced in the 1970s. The NDIA is using many different platforms to promote the transition to the NDIS. This one is specifically for people with Down syndrome and their families:

NDIS and Me is a closed Facebook group for Australians with Down syndrome and their families. The aim of the group is to help its members to get ready and get the best outcomes they can from the National Disability Insurance Scheme (NDIS).

This Facebook group is just one of a number of Local Support Groups (LSG) being set up across the country by peer support organisations. Most LSGs will be face-to-face groups in local places, but you can take part in this group, wherever you are in Australia. We hope that people already in the NDIS as well as people yet to sign up will join this group to share information and support.

The group is funded by the NDIA and its goals include that people will learn how to:

• Exercise choice and control
• Effectively engage with the NDIS
• Effectively engage with mainstream programs, services and activities
• Increase opportunities for independence, self-management and community inclusion

DSWA runs the group with support from DSNSW and DSV.

• Get more information and request an invitation to join the closed Facebook group here.

Working

Employment has many dimensions for everyone - for people with Down syndrome there are extra considerations, arising largely from a history of low expectations that 'employee' was a role that most would ever fill. This post highlights just a few of the increasing variety of jobs that some people with Down syndrome hold down now, at the same time as some struggle to find a job at all:

Cafe in Istanbul only employs workers with Down syndrome

Daily Sabah, 20th June 2015

At first glance, there is nothing out of the ordinary in Down Café located in one of the more well off neighborhoods of Istanbul.

The hint is in the name. Indeed, all 25 employees, aged 18 to 25, have Down syndrome.

"Down Cafe was established to create employment and increase the self-confidence of young people with Down syndrome," says Saruhan Singen, who opened the café in Sisli district of Istanbul ...
Maddie Stuart, model with Down syndrome, lands her first gig with fitness brand Manifesta

Jenny Noyes, Daily Life, 7th July 2015

... Stuart has landed her first modelling contract, fronting a campaign for body-positive activewear brand Manifesta, which designs clothes specifically with curvy women in mind .... it also showcases its clothes on strong, healthy women of all shapes and sizes ...

Ethical Hotel managed by staff with Down Syndrome

Annalisa Lista, WEST, 22nd June 2015
Italy’s first ethical hotel has opened in Asti, run by staff with Down’s syndrome. It has 21 rooms and a staff of impeccable waiters, receptionists, sommeliers and tour guides with Down’s syndrome offering a wide range of services, with something for everyone ...

A first for the Minneapolis Police Reserves
Everyone Employed, 1st May 2015
Ever since Sam was young he has been passionate about helping others in his community, information that was discerned during the early phases of his employment discovery journey. More recently, it has become clear that Sam has developed a strong interest in law enforcement and detective work ...

Research news and commentary #5 for 2015

Genetic disorders in children: An assessment of fathers coping strategies, wellbeing, and support

Find Lab (Family Interaction and Neurodevelopmental Disorders) is based in the School of Psychology at the University of Newcastle, Australia.

' ... (our research) acknowledges the importance of family and social support in promoting health and well-being in vulnerable children and young people. In particular the focus of our research is on young people with Neurodevelopmental Disorders such as 22q11.2 deletion syndrome (also known as velo-cardio-facial syndrome), Williams syndrome, Prader-Willi syndrome, autism spectrum disorders and their families. We also investigate the Mental Health of Parents and the impact of mental health issues on child development. This research includes biological and foster carers with and without mental health issues.'

You are invited to participate in this study as a father or male caregiver of a child diagnosed with a diagnosed neurogenetic disorder (such as 22q11.2 deletion syndrome, Velo-cardio-facial syndrome, DiGeorge syndrome/sequence, Fragile X, Down syndrome, Prader-Willi syndrome, Tuberous Sclerosis, etc.).

The online survey asks about experiences of well-being, coping styles and access to support.

• Contact: Kirsty Rudd, Kirsty.Rudd@uon.edu.au

Thick cortex could be key in Down syndrome

Drexel University,  19th June 2015
The thickness of the brain's cerebral cortex could be a key to unlocking answers about intellectual development in youth with Down Syndrome. It could also provide new insights to why individuals with this genetic neurodevelopmental disorder are highly susceptible to early onset Alzheimer's Disease later in life.

Dementia diagnostic criteria in adults with Down syndrome 
Rosalyn Hithersay, Learning Disabilities Elf, 5th June 2015

... Although we may think of dementia as covering a range of diseases that mainly affect people’s memory, in people with DS, carers may see personality changes and problems with planning and controlling behaviour before memory problems are noticeable (Ball et al., 2006).

As dementia may develop differently in people with DS, we do not know if the criteria that we use to diagnose dementia in the general population are suitable for this group ...

Down Syndrome Education International Research Forum (UK)
The Down Syndrome Research Forum is a regular international event, sponsored by Down Syndrome Education International, where researchers and practitioners meet to discuss current research, recent findings and implications for practice. Call for papers now open, closes 26th June 2015.

22nd - 23rd September 2015 - London

Can we model the development and maintenance of self-injury in children with developmental delay?

Alix Dixon, The Learning Disabilities Elf, 1st July 2015

Self-injurious behaviour is demonstrated in some children with developmental delay and is known to have a substantial impact on the well being of the children and their carers. Studies suggest that the prevalence of self-injury in children with severe learning disabilities is around 17% ...

Lines of Inquiry June 2015 - Centre for Applied Disability Research newsletter

Key Word Sign Workshop - Karuah

Key word signing workshop is coming to the Hunter! Limited places left.

This event is free for members of Down Syndrome NSW but registration is essential.

Local DS NSW member Olivia Hurstfield has organised Hands Can Talk to give a half day workshop on school based key word signing. Staff from local schools and community organisations will be attending as well as parents.

The session will cover

• Approximately 80 everyday signs used at school 
• Different situations where signs can be introduced 
• Techniques for remembering & practicing signs 
• Survival signs covering play, behaviour, lunch, recess and classroom activities. 

This is a great opportunity for school staff and parents to learn the same signs and techniques and be consistent at home and school with signing.

10am—12.30pm Monday 13th July 2015
Karuah RSL Club, Tarean Rd Karuah

Contact admin@dsansw.org.au to register or call 1800 811 629

Accessible Arts Grants Program 2015-2016

Accessible Arts is the peak arts and disability organisation across New South Wales.

The Grants Program consists of Quick Response Grants up to $5,000 and Small Grants from $5,000 – $20,000 over two-grant rounds in 2015 and 2016.

Accessible Arts highly encourages applicants to consider artist with disability led projects and/or integrated projects with artists with and without disability as part of their application.

Applications are invited from across NSW and across all artforms. Applicants from regional and remote NSW are particularly encouraged to apply. Small Grants applications close this Friday, 10th July 2015.
Visit Accessible Arts website for more information.

Positions Vacant - Down Syndrome NSW

Down Syndrome NSW is currently looking for passionate, energetic and committed individuals to fill casual Community Connector positions in its National Disability Insurance Scheme (NDIS) Disability Support Organisation (DSO) Capacity Building Project.
The NDIS DSO Capacity Building Project team will be setting up local chapters of the Up! Club group, across various locations around New South Wales.

The goal of each local Up! Club group will be to build the social networks and capacity of people with Down syndrome or another intellectual disability, and their families to:

• Exercise choice and control
• Effectively engage with the NDIS
• Effectively engage with mainstream programs, services and activities
• Increase opportunities for independence, self-management and community inclusion.

1. Community Connector – Western Sydney and Blue MountainsThis position involves establishing and coordinating two chapters of the Up! Club social group for adults with Down syndrome or another intellectual disability in the Western Sydney and Blue Mountains region.

The successful applicant will be based in the Western Sydney / Blue Mountains region, with strong networks in the local community.

The position is approximately 20 hours (2-3 days) per month – mainly weekends.

2. Community Connector – Far North Coast This position involves establishing and coordinating two chapters of the Up! Club social group for adults with Down syndrome or another intellectual disability on the Far North Coast of NSW.

The successful applicant will be based on the Far North Coast, with strong networks in the local community.

The position is approximately 10 hours (1-2 days) per month – mainly weekends.

3. Community Connector – Mid North Coast This position involves establishing and coordinating two chapters of the Up! Club social group for adults with Down syndrome or another intellectual disability on the Mid North Coast of NSW.

The successful applicant will be based on the Mid North Coast, with strong networks in the local community.

The position is approximately 10 hours (1-2 days) per month – mainly weekends.

For more information:
If you would like an information package please email admin@dsansw.org.au – specifying the position that you would like information about in the email subject line.

Applications close Friday 24 July 2015.

Weekend reading and viewing 4th - 5th July 2015

Jillian The Magnificent takes vows

Paul Daugherty, Cincinnati.com, 29th June 2015
... I don't know what it's like to scale Everest or to create a polio vaccine or bloop base hit No. 4,192 onto the plastic at Riverfront Stadium. I couldn't tell you how it feels to be elected president or walk on the moon ...

I know lifetime achievement, though. I know what it's like to spend every minute of every day working to defy perception and stereotype and How It's Always Been, in the pursuit of another person's happiness, and by extension my own.

At about 6:10 Saturday night, I was Edmund Hillary and Pete Rose, Jonas Salk and Billy Hamilton. That's when Jillian The Magnificent became Jillian Daugherty Mavriplis ...

The Down's Syndrome woman who shattered Stephen Nolan's prejudices

Stephanie Bell, Belfast Telegraph, 24th June 2015

... What a difference a few decades and a group of determined parents can make. When their daughter Louise was born with Down's Syndrome, Newry lawyers Emer (72) and Alan (73) Cleland couldn't have been given a more negative forecast of what the future would hold for their little girl ... Today, Louise is a happy 33-year-old doing her dream job of working as a classroom assistant in a primary school in Warrenpoint, having passed her NVQ levels 1 and 2.

Fast-forward 30 years and the birth of little Embarr McCourt, from Armagh, couldn't have been more different.

This time when parents Tom (46) and Gemma (36) left hospital with their little girl it was with the most encouraging words from a consultant ringing in their ears.
They were told that they had no idea yet of the joy that Embarr was going to bring and that their lives would be enriched by having a child with Down's ...

The secret teacher got it wrong: a response to 'I am all for inclusion in principle, but it doesnt always work
Cátia Malaquias, Global Observatory for Inclusion, 25th June 2015
This is a response to the article published on 23 May 2015 by The Guardian ...

What is “inclusive education”? Many, like the Secret Teacher’s school, profess to strive for it. Many, like the Secret Teacher’s school, profess to practice it. But the practical reality is that too often, inferior formulations are wrongly labelled “inclusion” and sold to students with disability, to their parents and to their teachers as meeting or even exceeding the mark – many drink it (or are forced to drink it) none the wiser as to its quality or limitations ...

Why I Post Photos of My Child with Down Syndrome OnlineAmy Julia Becker, Parents.com, 29th June 2015
When I first considered blogging regularly about our oldest daughter Penny, who has Down syndrome, I had to think long and hard about sharing Penny’s image online. Not only does it involve the risk of strangers seeking her out and the possibility of someone stealing her image, but the internet is also full of sites that intentionally mock people with Down syndrome.

In spite of all the risks, I share pictures of and stories about Penny every chance I get ...

Dear Pixar: 'Inside Out' and Papercut Death
Jisun Lee, Kimchi Latkes, 22nd June 2015
... So I took my kids to see 'Inside Out' last week. It was good. Until it wasn’t.

There I sat, at the peak of the story arc, watching Joy and Sadness hang on for dear life while their buddies inside headquarters tried to figure out how to break open the glass and let them in. It was tense. Would they make it in? Would Riley get back in touch with all her feelings? Disgust had a righteous idea when she made Anger so mad he broke the glass open. Clever.

But why, Pixar, why???

These moments are little, I admit it. It isn’t like the punch to the gut that I feel when I hear short bus jokes or see that stranger stare at my child like he’s contagious. Instead, jokes like the one you made in Inside Out are like little paper cuts. Little stings that remind me that the world thinks that my kid’s existence is something that no one wants. In case I forget, you know. Wouldn’t want that.

Let’s not break up, Pixar. You seem like a decent force for good ...

Down Syndrome Australia welcomes Federal funding

Down Syndrome Australia posted this excellent news late yesterday (2nd July 2015). 

Recent difficulties in securing Federal funding were reported here, here and here:

Step in the right direction on federal funding

The Australian Federation of Disability Organisations (AFDO) has secured a $600,000 funding commitment from the Federal Government to work with ten national organisations representing people with disability and their families.

The funding will allow AFDO to identify practical solutions that can support people with disability to access information, peer support and best practice specific to their condition and build the capacity and self-sustainability of people with disability organisations.

AFDO CEO Matthew Wright said the Federal Department of Social Services funding was a “step in the right direction”.

“This is a welcome announcement which will enable specialist people with disability, representative and family organisations to keep their doors open this year and to continue to provide important support to over 200,000 Australians with disability. However there is still work to be done to secure our future” said Mr Wright.

“This is a step in the right direction and reflects an understanding that specialist people with disability, representative and family organisations play a valuable role in supporting the community and building an NDIS.

“I am very pleased with what our ten organisations have achieved working collaboratively to ensure that every person with a disability has a voice.”

“Two national organisations, through AFDO, will receive Federal funding for the very first time, including Down Syndrome Australia and Autism Aspergers Advocacy Australia. Mental Health Australia will also receive funding to build the capacity of mental health consumer and carer voices.”

CEO of Down Syndrome Australia Ruth Webber said it was the first time ever that Down Syndrome Australia had been funded by the Federal Government.

“We welcome the recognition of the important role we play for the Australian Down syndrome community and the support we provide to over 4000 people with Down syndrome and their families. This funding enables us to develop additional resources to support new parents and to provide information to adults with Down syndrome about the opportunities the NDIS can bring to make more informed choices,” Ms Webber said.

Our organisations look forward to working collaboratively with the Federal Government.

“We would like to thank Minister Fifield and the Department of Social Services for this important step forward. We will work collaboratively with DSS to ensure we build the capacity of our organisations as the NDIS commences full roll out,” said Mr Wright.

“AFDO and our ten people with disability, representative and family organisations would like to publicly acknowledge the significant support we have received from departmental staff, advisors, ministers, people with disability, carers and service organisations and the media. I have been overwhelmed with the support we have received, reflecting the value that Australians place on the importance and contribution of people with disability broadly.”

Matthew Wright, AFDO CEO

To download this article as a PDF, visit the AFDO website where the story was originally published.

Latest additions to events pages

'Other events' page:

These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them

2015 Trevor Parmenter Lecture
The lecture topic, The potential of dis/ability to rethink the working of civil society, is in keeping with Emeritus Prof Trevor Parmenter's commitment to making the world a better place for all. Information flyer, online booking / or registration form.
Friday 31 July 2015 - Camperdown


2015 IDEAS Possability Expo

24th - 25th July 2015 - Penrith

News and commentary on the NDIS (34)

NDIS Progress Report: Year Two

NDIS e-News - June 2015

NDIS FAQs by My Choice Matters

Five fact sheets are available to download in Plain English and/or Easy Read:

NDIS FAQs 1 - Can I get the NDIS?
NDIS FAQs 2 - What should I know about plans?
NDIS FAQs 3 - How do I manage funding?
NDIS FAQs 4 - How do I make my plan come true?
NDIS FAQs 5 - What if I am not happy?

Disability Advocacy Review highlights need to be nimble

School for Social Entrepreneurs, 24th June 2015

As the Federal Government’s National Disability Advocacy Framework calls for people with a disability, their families and advocates to provide feedback, the need for disability service organisations to be nimble has also been highlighted ...

Federal NDIS trial has given my sons a new chance at life: Perth mum

Emma Young, Sydney Morning Herald, 17th June 2015

Taking part in the federal National Disability Insurance Scheme trial has given a Perth mum hope that her sons will have a chance to have careers and live independently ... She described being on the NDIA as being able to be like a business owner, able to self-manage your own funding, choose your therapists and sign your own service agreements. She had found it a bit overwhelming, so had chosen a partial model in which service providers looked after the boys' care but she self-managed respite services.

Overall, she said, accessing service providers and choosing what would suit the boys best became easier ...

Disability Challenge

Helen Gregory, Newcastle Herald, 10th ajune 2015
Dale Mulligan’s steady determination, combined with the efforts of Disability Advocacy NSW and his Legal Aid team, have made him the first person to successfully appeal to the Federal Court to access the National Disability Insurance Scheme ...

1st July - NDIS expands to Maitland, Blue Mountains areas

1st July - a major date for the implementation of government initiatives, new regulations and changes to existing programs.

Today sees the expansion of the National Disability Insurance Scheme trial site in the Hunter (to the Maitland LGA), and its beginning in the Nepean/Blue Mountains region of NSW.

NSW Council on Intellectual Disability recommends that potential new participants the NDIS in the Nepean Blue Mountains area pages on the NDIS website.

2000 children set to benefit from NDIS in the Nepean and Blue Mountains region

Rachel Browne, Sydney Morning Herald, 30th June 2015

... Initially available for 2000 children and teenagers, the scheme launches on Wednesday, with support packages available from September ...

... Early intervention is a priority for the scheme, which will be gradually phased into the Nepean and Blue Mountains region ...

... An information office will open in Penrith on Wednesday, followed by other shop fronts in the Nepean and Blue Mountains area. Staff from the NDIA, which is implementing the scheme, will be available to answer questions on the types of support which will be available.

National disability insurance scheme expands to Maitland 

Michelle Harris, The Newcastle Herald, 30th June 2015
The National Disability Insurance Scheme is set to roll out in Maitland from Wednesday, opening it up to 5000 more residents in the region two years after the NSW trial of the reform was launched in the Hunter ...

Independent Reviews of NDIS Decision Key to NDIS Success
Disability Advocacy NSW (DA), 29th July 2015 (media release)

With the National Disability Insurance Scheme (NDIS) trial beginning in Maitland, Disability Advocacy NSW (DA) is asking more people to seek reviews of NDIS access and care plan decisions as a way to make sure the Scheme works well in practice. So far the Hunter trial has had the highest ineligibility rates but very low review rates.

Recent issues of online newsletters

Hand in Hand - Summer 2015

Down Syndrome Research Foundation (Vancouver)
Feature articles on reading comprehension and fluency

• Back issues of Hand in Hand

Down Syndrome News Vol 38, Spring 2015 
(US) National Down Syndrome Congress
Feature article: Building a Strengths Mindset, Ryan M. Niemiec
Sometimes we all need a little push toward the positive. Parenting a child with special needs often presents challenges other families don’t face and scenarios in which no template for management exists ...

• Back issues of Down Syndrome News

Ombo Info - June 2015
NSW Ombudsman's Office newsletter
Safeguards for people with disability:

• Update on the commencement of the Disability Reportable Incidents scheme
• Submission to Australian Parliament Senate Inquiry
• Submission on Proposal for an NDIS Quality and Safeguarding framework

Accessible Arts Newsletter - June 2015
Arts and disability news around NSW

NSW CID on supported and substitute decision making

Supported decision making YES! But what role for substitute decision-making?
NSW Council on Intellectual Disability (blog), 25th June 2015

NSWCID strongly supports the movement in recent decades towards maximum control by people with intellectual disability over their own lives.

Far too often, decisions have been made for people with intellectual disability rather than people being offered any support that they need to make their own decisions. Where decisions have been made for people, too often they have been overprotective and not taken enough account of the person’s views ...

See and Learn Numbers: new teaching resouce

Down Syndrome Education International has announced a new release in the See and Learn series:

We are delighted to announce a new addition to our See and Learn resources. See and Learn Numbers is designed to help parents and educators teach children basic number skills and concepts. It will be available soon as apps and kits ... further details and links on the See and Learn blog, here.

Free webinars are one of the strategies offered to introduce See and Learn Numbers. Times that will be most convenient for Australian users are

Wednesday 8th July 7 pm AEST   Introducing See and Learn Numbers
Wednesday 7th September 7 pm AEST   Introducing See and Learn Numbers

Details and times/dates for other time zones are available here (you can enter your own time zone to give the equivalent local time for each event).

NSW Budget Update from NSW CID

NSW Council on Intellectual Disability e-news, June 2015:

The budget was released last week, with the government delivering the final instalment
of their Ready Together initiative, as well as outlining their commitment to the roll out of the NDIS in Western Sydney. 

Further resourcing has also been provided to ensure that people are transitioned from institutions to living in the community. 

However, no certainty has been provided to disability advocacy groups.

Read the Ministers Media Release here .
Read NCOSS Media Release here. 

On advocacy, leadership and the law

An Ambitious Advocate

Xavier Smerdon, ProBono News Australia, 22nd June 2015
A tireless advocate for people with disability, Graeme Innes has spent his life fighting for fairness. The former Disability Discrimination Commissioner is this week’s Changemaker ...

A lawyer by trade, Innes told Pro Bono Australia News that being born blind meant he had to start his career at the bottom and work his way up.

He has used this experience the shape the way he advocates for other people with disability ...

Plans to appoint wind farm commissioner 'very hurtful', says former disability commissioner Graeme Innes
Judith Ireland and Lisa Cox, Sydney Morning Herald, 19th June 2015
Former disability commissioner Graeme Innes has blasted the Abbott government's plans to appoint a national wind farm commissioner when there is no full-time disability commissioner as "very hurtful" and "very damaging".

"It sends a very clear message about where people with disabilities fall in the pecking order," he told Fairfax Media on Friday.

"Clearly, we fall below strong lobbyists." ...

Why disability advocacy matters under the NDIS

Yael Frisch, Every Australian Counts, 18th June 2015

Since we all celebrated the first launch sites for the National Disability Insurance Scheme one of the biggest sources of uncertainty that has emerged is what will happen to disability advocacy services in this mix.

While there is a huge focus on services that provide choice and control, when you get asked big questions about life to shape your NDIS plan your first instinct isn’t likely to be “Advocacy fees thanks! Assistance with understanding my rights and ensuring they are protected!” ...

Children and young people in disability advocacy

NSW CID e-news, January 2015
Children with Disability Australia (CDA) have released an insightful issues paper highlighting how there are barriers that prevent children with disability from being advocates. The paper explores this in-depth and provides practical strategies on how organisations can encourage and include children and young people in being a voice so social and policy change. Click here to download the issues paper.

Equality, Capacity and Disability in Commonwealth Laws
Australian Law Reform Commission, 2014

Equality, Capacity and Disability in Commonwealth Laws (ALRC Report 124), 24 November 2014 Final Report 

This final report was tabled on 24 November 2014.This Inquiry examined laws and legal frameworks within the Commonwealth jurisdiction that deny or diminish the equal recognition of people with disability as persons before the law and their ability to exercise legal capacity.A Summary Report is also available. 

Equality, Capacity and Disability in Commonwealth Laws (ALRC 124 Summary), 24 November 2014 Final Report 

This Summary Report provides an accessible overview of the policy framework and recommendations in the final Report, Equality, Capacity and Disability in Commonwealth Laws (ALRC Report 124), tabled on 24 November 2014. 

Launch of 'Equality, Capacity and Disability in Commonwealth Laws' - Graeme Smith, NSW Public Guardian presentation, at the launch of ALRC Final Report Equality, Capacity and Disability in Commonwealth laws in Sydney on 11 December 2014.

Acts of kindness aren't enough: disabled people need acts of leadership

Clementine Ford, The Age, 31st December 2014
... It was Stella (Young) who taught me about the social model of disability, which posits that people aren't disabled by their own bodies or conditions but by how society refuses to adapt itself to fully accommodate them. We live in a world that has more respect for heritage-listed buildings than it does for the actual human beings who can't get into them. There is more outcry over children being denied entry into pubs and bars than there is over the fact that wheelchair users can't even get into many of them - and when they can, they still can't be guaranteed that there'll be a toilet they can use. Ignorance and bigotry still actively prevent disabled Australians from making autonomous decisions about their own lives, even while the rest of the country insists on exploiting them for inspiration and motivation ...

Jackie Softly (former Acting CEO, Down Syndrome Australia) commented: Absolutely agree with Clementine Ford on this, but once again, people with intellectual disability and their access and equity issues are nowhere to be seen. Let's make 2015 a year when this changes, when it's realised that lack of information and the support you may need to understand it and have your voice heard excludes just as surely as the lack of physical access does.

National Disability Advocacy Framework
Earlier this month, the Federal Government announced a review of its National Disability Advocacy Framework. Submissions close on 24th July 2015.

Weekend reading and viewing: 27th - 28th June 2015

Nothing tops a pint with dad

Andrea Smith, The Independent (Ireland), 22nd June 2015

This Father's Day, David Clarke pays tribute to his dad Pat, CEO of Down Syndrome Ireland, even though he supports Chelsea ...

My Dear Dad

Jerome Lejeune Foundation, 15th June 2015

As a special tribute to fathers and their children living with Down syndrome, the Jerome Lejeune Foundation will launch a video this week in honor of Father’s Day on June 21st called “My Dear Dad:" A heartwarming glance into moments shared by a father and his very special son ...

Therapy for Children with Disabilities
Jisun Lee, Kimchi Latkes, 22nd June 2015
Imagine that someone—let’s call her F. Poe Tenshal—tells you that your baby needs to run faster when he grows up. Ms. Tenshal says that in the world, people need to run at a certain speed in order to do things. Important things. Ms. Tenshal enrolls you and your baby in a program. This program, she says, will allow your baby to reach his fullest, fastest potential. His true self. His best self ...

When Marcus Rolls, Everybody Wins!

Mardra Sikora, Lessons More Special than the Needs, 21st June 2015
Marcus has been pretty stoked for this birthday. 25 has been his “number” all year. I’ve never known anyone more excited to be 25. As you may remember, it was pretty much the day after his 24th birthday that he decided to celebrate 25 in Vegas ...

Attitudes - Grading People

Amy Sequenzia, OllieBean, 14th September 2014

Parents and family of disabled people should start demanding that everyone who is part of their children lives stops using functioning labels. We don’t need to be graded. We already have value ...

God bless the child
Jennifer Lawler, Purple Clover, 26th September 26, 2013
My daughter and I couldn't be any more different and that makes me love her even more ...

Poverty and social disadvantage – move over folks, you've had your go
Mark Bagshaw, Pulse (Linked In) 23rd June 2015
On last night's controversial Q and A program on the ABC I had the opportunity to ask the panel a question about poverty and social disadvantage ... As I listened to the responses from the panel to my question, I was left with a profound sense that I was on the set of a B grade remake of Groundhog Day ...

People With Disability Australia E-bulletin June 2015

Canadian Down Syndrome Society campaign 2015

News from the disability sector

Overjoyed, Overwhelmed’, Boy with autism and mother get residency after deportation fight

Robert Burton-Bradley, SBS, 25th June 2015
Townsville nurse Maria Sevilla and her son Tyrone are celebrating tonight after receiving formal notification from the Government that they will be granted permanent residency after months of anxiety and uncertainty for the family ...

Carers Govt Advisory Group Named

ProBono Australia News, 25th June 2015
The Federal Government has announced the members of a new Carer Gateway Advisory Group to lead an initiative to support Australia’s 2.7 million unpaid carers.

The Government announced $33.7 million in the 2015 Budget to build a national carer gateway and to integrate supports for carers to help them get the support they need.

The 12-member Carer Gateway Advisory Group includes a mix of experts from service providers, peak bodies and individuals with a lived experience as a carer.

The Assistant Minister for Social services, Senator Mitch Fifield said the group would draw on this extensive experience to make sure the carer gateway meets the needs of carers across the country.

“From December 2015, the national carer gateway will be the front door for government support and information for all carers, regardless of who they care for,” Fifield said ... read more on the advisory group and its  membership here.

Adequacy of existing residential care arrangements available for young people with severe physical, mental or intellectual disabilities in Australia

Commonwealth of Australia, 24th June 2015

Urgent Action Needed on Young People in Aged Care
ProBono Australia News, 25th June 2015
... It said young Australians under the age of 65 currently occupy five per cent of residential aged care facility beds in Australia.

“Both in my home state of Western Australia and nationwide, it is clear the issue of young people with disability living in aged care facilities is going unresolved; too many young people with disability (i.e. under the age of 65) continue to live in aged care," Community Affairs Committee Chair, Senator Rachel Siewert said ...

Joint Statement on the report 

Young Care, Young People in Nursing Homes National Alliance Summer Foundation, 23rd June 2015

The Young People In Nursing Homes National Alliance, the Summer Foundation and Youngcare welcome the tabling of the Senate’s Inquiry Report into the Adequacy of Residential Care Arrangements for young disabled Australians in the federal Parliament on June 24. 

Throughout its hearings, the Senate’s Community Affairs Committee members have consistently heard calls from family members and YPINH themselves for access to rehabilitation and other vital health services; for innovative housing options to be developed; and for health, housing, disability and aged care services to work collaboratively to deliver the solutions they need. Committee members have also heard first hand of the devastation that results when the full suite of services these young Australians require, are not available to support them. 

Bronze Lion award for 'The Special Proposal'

You will remember the video The Special Proposal, launched for World Down Syndrome Day 2015 in March. It has just this week won a prestigious Bronze Lion at the Cannes Lions International Festival of Creativity, a global event for creative communications, advertising and related fields. In 2013, the festival attracted over 35,000 entries.

Congratulations to all involved - a great achievement, and a great story worth seeing again, here.

People with Down syndrome online and in other media

People With a Learning Disability Aren't From Mars

Sarah Gordy, Huffington Post (UK), 15th June 2015

As an actress with Down's syndrome and a learning disability you could say I'm fairly rare. I've always enjoyed acting and was told I had a strong talent for it at an early age. Some people underestimated me though.

Today I'm filled with pride to help Mencap announce the beginning of Learning Disability Week. A week where the charity is hoping to break down some of the barriers people like me have faced, by making sure the public really understand what a learning disability is, and that there's no reason to feel afraid or awkward when talking about learning disability ...

Growing up with a disability and facing the bullies
House With No Steps (blog), 23rd June 2015
Growing up with a disability meant that at times I had to face bullies. I want people to know that bullying is not normal and it needs to change - Susy ...

Is there an actor in the house? : Adults who have Down syndrome take the stage

Stephanie Holland, The Road We've Shared, 24th May 2015

One of the ways society is finding out more about Down syndrome is through television and film. While healthy debates within our community critique the message of stories and methods used to tell it, we can all agree that the performances are priceless ...

Woman with Down's Syndrome first in UK to win professional dance tuition place
ITV 2nd June 2015
A 20-year-old woman from Nottingham has become the first person in the UK with Down's Syndrome to gain a place on a scheme for talented young dancers.

Beth Gardiner from Wollaton auditioned for a spot on the Centre for Advanced Training, a programme in which amateur dancers can get professional tuition to further their careers ...

Being a person with Down's syndrome
Kate Powell, DSA (UK) blog,  3rd June 2015
Me Proud. I am a Person To make a difference to a lot of People that’s Me. We may find things difficult, everybody does...

Ruckus Group set to tread the boards

Michele Jedlicka, The Inverell Times, 29th May 2015
It has been a week of dreams and wishes. Alison Richardson, filmmaker Tim Dennis and the ruckus ensemble from Parramatta’s Beyond the Square performing arts program for people with disability spent the week with people in Inverell.

Ruckus itself came for the trip to hone their skills as workshop leaders and encourage locals with a disability to be creative and push beyond their perceived limitations ...

Martin Sheets, Who Shone at the Special Olympics, Dies at 62

Richard Goldstein, New York Times, 24th May 2015

Martin Sheets, who became a face of the Special Olympics, winning more than 250 medals competing for more than 40 years in its events for people with intellectual disabilities, died on Thursday in Greensboro, N.C. He was 62.

“Through the years, we’ve had so many people with children or other family members with special needs say how much it’s meant to see Marty and know of his accomplishments ... He’s had a great life.” ...