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Showing posts with label Interventions. Show all posts
Showing posts with label Interventions. Show all posts

Tuesday, 29 March 2016

Early Intervention survey - Dr Kathy Cologon, Macquarie University

Parents/caregivers of children in early childhood intervention services are invited to take part in a survey conducted by Dr Kathy Cologon, a well-known researcher in this field at Macquarie University:

Priorities and practices in early intervention: Parent perspectives
... The survey involves the completion of a questionnaire for parents/caregivers who have a child (or children) who participates in early childhood intervention services in Australia. This research is being conducted by Dr Kathy Cologon from the Institute of Early Childhood, Macquarie University (email: kathy.cologon@mq.edu.au or phone: 9850 9864). 
Early intervention services and supports are going through a period of considerable change in Australia at present. Through exploring the views and experiences of families and staff who participate in early intervention, this study will contribute evidence that is important for developing policy and practice in early intervention ...
The questionnaire incorporates 14 open-ended questions, followed by questions that need to be rated on a scale from 1-5 (these questions relate to your experiences of and your priorities for early intervention support). The final section asks for some brief demographic information and provides the opportunity for you to make any additional comments/suggestions if you wish.

The survey should take approximately 30-45 minutes to complete. You are free to skip any questions that you do not wish to answer ...

Monday, 29 February 2016

NDIS approach to early intervention published

There’s been a lot of talk about early intervention and the NDIS.  Today we’re releasing our Early Childhood Early Intervention approach, designed to ensure every child and their family receives individual support to meet their goals and aspirations ... NDIS on Facebook, 26 Feb 2016


NDIA announce first nationally-consistent approach to early childhood early-interventionNational Disabiity Insurance Scheme, 26 February 2016

For the first time, a nationally-consistent approach to supporting children with developmental delay or disability will exist with the release today of the National Disability Insurance Scheme’s (NDIS) Early Childhood Early Intervention (ECEI) Approach.

The National Disability Insurance Agency (NDIA) has worked with some of Australia’s leading early childhood intervention practitioners and researchers to design a best-practice approach that is family-centred and importantly, supports children to achieve good outcomes on a case-by-case basis.

NDIA Chief Executive Officer, David Bowen said early intervention was an important part of the NDIS.

"Evidence shows that timely support for a child with developmental delay before the age of six can significantly change that child’s developmental trajectory and overall quality of life," Mr Bowen said.

"The NDIS Early Intervention Early Childhood Approach is focused on inclusion, with children supported in a range of mainstream early childhood settings such as preschool and play group, meaning increased opportunities to learn and develop positive social relationships.

"The short, medium and long-term benefits to children from such support are proven to be significant. Effective early intervention also reduces the medium to long-term liability on the NDIS."

Under the ECEI approach, a child and their family will be referred to a specialist early childhood access partner who will discuss their needs and determine the appropriate supports to help them achieve their individual goals. Supports may include information services, emotional support or referral to mainstream services, or longer-term more intensive supports as part of a funded NDIS plan.

Mr Bowen said the ECEI approach was in line with the individual nature of the Scheme.

"The whole premise behind the NDIS is that each person is treated as an individual, receiving support to meet their unique set of needs, wants and goals to achieve the best outcome for them," Mr Bowen said.

"Exactly what that will look like for each child and their family will vary. The level and nature of supports is tailored to meet the individual needs of the child and their family, regardless of diagnosis.

The ECEI approach is currently being trialled in the Nepean Blue Mountains region. It will be rolled out nationally, in line with the arrangements in the bilateral agreements between the Commonwealth and state and territory governments.

For more information on the NDIS ECEI approach go to www.ndis.gov.au
  • Download the Early Childhood Early Intervention approach (PDF, 550KB)

Tuesday, 24 November 2015

Better Start Early Days: webinar dates December 2015 - february 2016

A program of webinars (online seminars or workshops) is a new initiative from the Better Start for Children with a Disability program:
... These interactive webinars have been developed to support parents of young children with disability navigate to the disability services environment. 
Participating in these webinars will help you to learn about and share information, tools, strategies and resources to help you in the early years of your child’s life. They will provide information about the Government’s Better Start Initiative and National Disability Insurance Scheme (NDIS) and how these can be used to benefit your child. 
Each webinar is 60 minutes long with materials available for pre-webinar reading and activities. Facilitators and guest speakers can be available for extended “chat” time after the webinar ...
Details on how to register and participate, and dates between 8th December 2015 and 16th February 2016 are now available at the Better Start website, here. Webinars will be repeated in 2016.



This program is funded by the Australian Government Department of Social Services. It is run by the First Step Alliance, which includes some Australia's most respected national disability organisations, including Down Syndrome Australia.

Monday, 12 January 2015

Reminder about two surveys

Free Stepping Stones Triple P programs for Parents and training for professionals

Stepping Stones Triple P (SSTP) is a new initiative to support families of children with developmental disabilities. Research has shown the programs help to reduce children’s behavioural and emotional problems, decrease parent stress, and increase parent confidence. 

The Project's My Say surveys, one for parents, and one for professionals, are still open for completion, and registration for the participation:



DSA Surveys - The NDIS and people with Down syndrome
It's not too late to complete one of these surveys, and your information will help DSA and state Down syndrome associations to best support people with Down syndrome and their families as we move into the NDIS. Please take a few minutes to complete an online survey now. Thank you.
Many members of state and territory Down syndrome associations have questions and concerns about the National Disability Insurance Scheme (NDIS) and how it works for people with Down syndrome of all ages. 
To be the best voice we can for the Australian Down syndrome community, we'd like to hear from you about your experiences with the NDIS, or (NDIS/NDIS My Way in WA) so far, and any thoughts, questions and concerns you may have. Your answers will also help DSA and the state and territory associations develop resources and tailor supports to help you, so please provide as much information as you can. 
There are two surveys to choose from: 
1. For people not yet in NDIS 
2. For people already in an NDIS or My Way trial site 
You don't have to be a member of your local association to take part.

Friday, 16 August 2013

Teaching reading to people with Down syndrome: Busting the myths - Myth #6: Reading for meaning

This is the final post in this series of six - our grateful thanks to Dr Kathy Cologon for taking the time to write about her work for a wide audience, and for generously sharing it with us here.

Myth buster #6: Reading for meaning  
Kathy Cologon, Macquarie University

In this series of blog posts I am addressing six common misconceptions in order to support families and teachers in providing opportunities for people with Down syndrome to learn to read. It is my hope that, by drawing together research on reading development in people with Down syndrome more people will have the opportunity to become readers.

James reading at school with his teacher
Reading can be a source not only of participation, choice and opportunity, but also of personal and shared enjoyment and engagement through reading for pleasure. However, if a person is not given the opportunity to learn to read then this wonderful world of reading is not available. The only way to find out how much someone can learn is to teach and keep on teaching!

While I am writing this series of blog posts to parents and teachers, I am aware that many people who have Down syndrome may also be reading this – if you are I hope you find this interesting. You, like me, have the right to learn to read and I hope that reading is a source of as much pleasure to you as it is to me!

There are a number of myths that may result in inappropriately low expectations and unnecessarily limited learning opportunities. In this series of blog posts I address six of these myths concerning (1)receptive and expressive language (what we say and what we understand), (2) phonological awareness and phonic decoding (awareness of sounds and applying these to reading), (3) functional reading or reading for pleasure and learning,(4) ‘reading readiness’ or (non)linear development, (5) optimal learning age and, (6) reading comprehension. These blog posts draw on a recent paper published in the Australian Journal of Teacher Education. I have included a link to the full paper at the end of the blog post for those who are interested in reading more on these topics. I would like to express my thanks to the editor of the journal for permission to use the paper in this series of blog posts. Many thanks also to all of the people with Down syndrome, families and teachers who have allowed me to share in their journeys and from whom I have learnt so much.

In this final blog post of the series I will discuss the development of reading comprehension.

Reading Comprehension

Myth #6: People with Down syndrome cannot understand what they are reading.
Reality: People with Down syndrome can understand what they read. However, appropriate educational opportunities supporting reading comprehension development are essential.

In the past it was incorrectly assumed that people with Down syndrome do not comprehend what they read and instead recall words by rote as meaningless memorised sequences of letters – referred to as ‘barking at print’. In reality, research provides clear evidence that people with Down syndrome can and do comprehend what they read. Reading comprehension is an area, however, where people with Down syndrome may need particular support for learning. 

One issue for reading comprehension lies with the extent to which methods of measuring comprehension rely on spoken language. It is essential to carefully consider whether the approach used for measuring reading comprehension is actually measuring reading comprehension or whether it is in fact measuring expressive (spoken) language. 

Engaging in a wide range of meaningful, personally relevant, fun, and contextualised literacy experiences is important for all people in learning to read. People with Down syndrome often need ongoing support for developing listening and reading comprehension through meaningful and broad engagement with the world. Supporting reading comprehension development requires carefully reflecting on the activities we engage students in, to make sure that we are in fact teaching and not testing. Teaching new concepts as they are introduced is important rather that a) assuming they are understood without teaching, checking or reminding, or b) assuming that they are not understood and therefore can’t be read. Teaching strategies to check for meaning, drawing on context and clues within the text and connecting with and building on current experiences and knowledge, are important for reading comprehension.

There are considerable negative implications if the myths discussed in this series of blog posts are perpetuated – including that the myths may become self-fulfilling prophecies. People with Down syndrome may find that developing reading comprehension skills is particularly difficult given:
  • A lack of phonological awareness and phonic decoding instruction (instruction to support development of awareness of sounds and applying these to reading) limits capacity for a person to develop the ability to read unknown words; 
  • Measurement of reading comprehension generally relies on expressive communication, which is not a true reflection of understanding (comprehension);
  • What a person knows or comprehends now is not what they are capable of learning (no matter a person’s age, the time for learning is now!);
  • Reading comprehension includes, but is not limited to, understanding a bus timetable – it is crucial for reading for learning and pleasure – but reading instruction is often limited to functional reading;
  • On the basis of assumptions regarding ‘reading readiness’ or linear development people are often held back with reading until they meet a required assessment level on a reading comprehension measure.
People can be very frustrated and unhappy about being held back, but are sometimes not supported to express this. For example, as illustrated in a case study by Julie Hooton and Anna Westaway [LINK TO http://www.down-syndrome.org/practice/2064/] when a learner does not reach scores required on a reading comprehension test and is therefore kept back at the same reading level, this is frustrating and demotivating for the learner. This also limits reading development.

On the other hand, piercing the glass ceilings – or approaching literacy learning opportunities free of myths – can have very positive results. A growing body of research demonstrates that advanced reading ability is a possibility when opportunities for learning to read – including an emphasis on making meaning and on phonological awareness and phonic decoding – are provided. Case study evidence demonstrates that supporting people to continue with reading development and supporting reading comprehension along the way can be highly successful (see the case study in the paper I am drawing from for this series of blog posts [LINK TO http://ro.ecu.edu.au/ajte/vol38/iss3/9/]). This involves making connections with meaning – rather than holding a person back on reading levels.

Providing support to enhance the development of reading comprehension is important. This requires placing emphasis on meaningful literacy experiences and linking reading to the learner’s everyday experiences and interests. 

The last word…

A holistic approach to literacy learning is important for all learners – including people who have Down syndrome. This requires building on the interests and strengths of the learner and engaging with quality literature, environmental print, experimental literacy and all forms of exchange of human communication through the rich experience of literacy learning. 

People with Down syndrome commonly have a relative strength in reading, but realising this strength requires learning opportunities and appropriate expectations. People with Down syndrome can develop advanced early reading abilities, but can also learn to read later in life. People with Down syndrome can develop phonological awareness and phonic decoding skills. People with Down syndrome are capable of understanding what they read. People with Down syndrome can be exceptional readers and can engage in reading alongside their peers in inclusive educational settings. However, the continuing discrepancy between what is possible and what occurs for many needs to be addressed.  

As Professor Sue Buckley of Down Syndrome Education International has written, “the only way to find out what level of literacy each child is able to achieve is to give him or her every opportunity to learn, with well-planned teaching activities from preschool years to adult life”. 

For full details of the research I am drawing from see: Cologon, K. (2013). Debunking myths: Reading development in children with Down syndrome. Australian Journal of Teacher Education, 38(3), 130-151.

Friday, 9 August 2013

Teaching reading to people with Down syndrome: Busting the myths - Myth #5: The time for literacy learning is now!

Fifth of six blog posts on the development of reading in children with Down syndrome, written by Dr Kathy Cologon, based on her recent academic paper, Debunking myths: Reading development in children with Down syndrome.

Myth buster #5: The time for literacy learning is now!  
Kathy Cologon, Macquarie University

In this series of blog posts I am addressing six common misconceptions in order to support families and teachers in providing opportunities for people with Down syndrome to learn to read. It is my hope that, by drawing together research on reading development in people with Down syndrome more people will have the opportunity to become readers.

Reading can be a source not only of participation, choice and opportunity, but also of personal and shared enjoyment and engagement through reading for pleasure. However, if a person is not given the opportunity to learn to read then this wonderful world of reading is not available. The only way to find out how much someone can learn is to teach and keep on teaching!

While I am writing this series of blog posts to parents and teachers, I am aware that many people who have Down syndrome may also be reading this – if you are I hope you find this interesting. You, like me, have the right to learn to read and I hope that reading is a source of as much pleasure to you as it is to me!

There are a number of myths that may result in inappropriately low expectations and unnecessarily limited learning opportunities. In this series of blog posts I address six of these myths concerning (1)receptive and expressive language (what we say and what we understand), (2) phonological awareness and phonic decoding (awareness of sounds and applying these to reading), (3) functional reading or reading for pleasure and learning,(4) ‘reading readiness’ or (non)linear development, (5) optimal learning age and, (6) reading comprehension. These blog posts draw on a recent paper published in the Australian Journal of Teacher Education. I have included a link to the full paper at the end of the blog post for those who are interested in reading more on these topics. I would like to express my thanks to the editor of the journal for permission to use the paper in this series of blog posts. Many thanks also to all of the people with Down syndrome, families and teachers who have allowed me to share in their journeys and from whom I have learnt so much.

In this blog I will discuss the notion of an optimal learning age.


Optimal Learning Age

Myth #5: If a child does not learn to read in his/her early years then it is too late for reading development.
Reality: It is never too late to learn to read! Literacy experiences are very important in the early years, but if a person does not learn to read during childhood they can learn as an adolescent or as an adult.

In the past few decades, we have heard much about the impact of early experiences on brain development, and thus the great importance of the early years of life. Economic modelling from Nobel laureate James Heckman demonstrating the gain-per-dollar-spent being greatest in the early childhood years, along with research into benefits of early intervention, has led to increased interest in research and practice in the early childhood years. 

Early childhood experiences are very important for ongoing development and it is clearly imperative to support all children in having the best possible early childhood experiences. However, learning is an ongoing part of life – including literacy learning. Research with teenagers and adults who have Down syndrome provides evidence that learning to read is possible well into adulthood. We can conclude that the notion of a ‘plateau’ or point at which reading development ceases is another myth or ‘glass ceiling’. If someone does not learn to read when she or he is young they can still learn to read as an adolescent or an adult (as long as learning opportunities are provided).

Many children need ongoing support for reading development throughout childhood and beyond – and it is never too late to learn. Ongoing opportunities for literacy learning beyond the early years, utilising age-appropriate materials that draw on a person’s interests, are essential. 

Having said that, case study research has provided evidence to demonstrate that some children with Down syndrome develop reading ability at a very early age and that early reading development can have benefits for ongoing language development. Given the particular benefits that learning to read may have for spoken language development in children with Down syndrome, the opportunity to learn to read at an earlier age than expected for the general population may be developmentally important. Additionally, it has been shown that early literacy instruction leads to higher levels of later reading achievement in children with Down syndrome.

In short, for a person who has not yet learnt to read (whatever his/her age), the time to get started on supporting reading development is now!

For full details of the research I am drawing from see: Cologon, K. (2013). Debunking myths: Reading development in children with Down syndrome. Australian Journal of Teacher Education, 38(3), 130-151.

Friday, 2 August 2013

Teaching reading to people with Down syndrome: Busting the myths - Myth buster #4: Ready already!

This is National Literacy and Numeracy Week 2013

Fourth of six blog posts on the development of reading in children with Down syndrome, written by Dr Kathy Cologon, based on her recent academic paper, Debunking myths: Reading development in children with Down syndrome.

Myth buster #4: Ready already!  
Kathy Cologon, Macquarie University

In this series of blog posts I am addressing six common misconceptions in order to support families and teachers in providing opportunities for people with Down syndrome to learn to read. It is my hope that, by drawing together research on reading development in people with Down syndrome more people will have the opportunity to become readers.


Reading can be a source not only of participation, choice and opportunity, but also of personal and shared enjoyment and engagement through reading for pleasure. However, if a person is not given the opportunity to learn to read then this wonderful world of reading is not available. The only way to find out how much someone can learn is to teach and keep on teaching!

Charlie
While I am writing this series of blog posts to parents and teachers, I am aware that many people who have Down syndrome may also be reading this – if you are I hope you find this interesting. You, like me, have the right to learn to read and I hope that reading is a source of as much pleasure to you as it is to me!

There are a number of myths that may result in inappropriately low expectations and unnecessarily limited learning opportunities. In this series of blog posts I address six of these myths concerning (1) receptive and expressive language (what we say and what we understand), (2) phonological awareness and phonic decoding (awareness of sounds and applying these to reading), (3) functional reading or reading for pleasure and learning, (4) ‘reading readiness’ or (non)linear development, (5) optimal learning age and, (6) reading comprehension. These blog posts draw on a recent paper published in the Australian Journal of Teacher Education. I have included a link to the full paper at the end of the blog post for those who are interested in reading more on these topics. I would like to express my thanks to the editor of the journal for permission to use the paper in this series of blog posts. Many thanks also to all of the people with Down syndrome, families and teachers who have allowed me to share in their journeys and from whom I have learnt so much.

In this blog post I will discuss the notion of ‘reading readiness’.

‘Reading Readiness’ or (Non)Linear Development

Myth #4: All people need to learn the skills for reading in a linear process wherein each skill is dependent on the previously learned skills.
Reality: Many people, including people with Down syndrome, have uneven development. Waiting for someone to achieve ‘readiness’ or master pre-requisite skills may prevent or at least limit reading development.

In the past, the concept of ‘reading readiness’ – which is the idea that a learner needs to master a series of pre-reading skills before they can learn to read – ironically prevented many people from learning to read. In research with diverse groups of children, including children with Down syndrome, this concept of ‘reading readiness’ has been shown to be inappropriate and out-dated.

‘Reading readiness’ makes a series of assumptions about a person, for example in regards to their spoken language development, fine motor skills, contextual experiences, cognitive development, vision and hearing. In reality there are many variations in human development and there are also many different ways in which a person expresses their interests and developing understandings.

Friday, 26 July 2013

Teaching reading to people with Down syndrome: Busting the myths - Myth buster #3 Reading is more than functional!

Third of six blog posts on the development of reading in children with Down syndrome, written by Dr Kathy Cologon, based on her recent academic paper, Debunking myths: Reading development in children with Down syndrome.

Myth buster #3: Reading is more than functional! 
Kathy Cologon,
Macquarie University

In this series of blog posts I am addressing six common misconceptions in order to support families and teachers in providing opportunities for people with Down syndrome to learn to read. It is my hope that, by drawing together research on reading development in people with Down syndrome more people will have the opportunity to become readers.

Reading can be a source not only of participation, choice and opportunity, but also of personal and shared enjoyment and engagement through reading for pleasure. However, if a person is not given the opportunity to learn to read then this wonderful world of reading is not available. The only way to find out how much someone can learn is to teach and keep on teaching!

While I am writing this series of blog posts to parents and teachers, I am aware that many people who have Down syndrome may also be reading this – if you are I hope you find this interesting. You, like me, have the right to learn to read and I hope that reading is a source of as much pleasure to you as it is to me!

There are a number of myths that may result in inappropriately low expectations and unnecessarily limited learning opportunities. In this series of blog posts I address six of these myths concerning (1) receptive and expressive language (what we say and what we understand), (2) phonological awareness and phonic decoding (awareness of sounds and applying these to reading), (3) functional reading or reading for pleasure and learning, (4) ‘reading readiness’ or (non)linear development, (5) optimal learning age and, (6) reading comprehension. These blog posts draw on a recent paper published in the Australian Journal of Teacher Education. I have included a link to the full paper at the end of the blog post for those who are interested in reading more on these topics. I would like to express my thanks to the editor of the journal for permission to use the paper in this series of blog posts. Many thanks also to all of the people with Down syndrome, families and teachers who have allowed me to share in their journeys and from whom I have learnt so much.

Macy loves books
In this blog post I will discuss the notion of functional reading.

Beyond functional reading 
Myth #3: Reading instruction for people with Down syndrome needs to focus on functional reading.

Reality: While functional reading is one important part of reading, reading is about much more than this. People who have Down syndrome can and should be given the opportunity to read for learning and for pleasure.


A functional reading approach typically involves using sight-word instruction to teach someone a set of words that are considered ‘functional’ for everyday life. For example, STOP, DANGER, TOILET, EXIT, MALE and FEMALE.

Friday, 19 July 2013

Teaching reading to people with Down syndrome: Busting the myths - Myth buster #2 Cracking the code for independent reading!

Second of six blog posts on the development of reading in children with Down syndrome, written by Dr Kathy Cologon, based on her recent academic paper, Debunking myths: Reading development in children with Down syndrome.


Myth buster #2: Cracking the code for independent reading!
Kathy Cologon, Macquarie University

In this series of blog posts I am addressing six common misconceptions in order to support families and teachers in providing opportunities for people with Down syndrome to learn to read. It is my hope that, by drawing together research on reading development in people with Down syndrome more people will have the opportunity to become readers.

Reading can be a source not only of participation, choice and opportunity, but also of personal and shared enjoyment and engagement through reading for pleasure. However, if a person is not given the opportunity to learn to read then this wonderful world of reading is not available. The only way to find out how much someone can learn is to teach and keep on teaching!

While I am writing this series of blog posts to parents and teachers, I am aware that many people who have Down syndrome may also be reading this – if you are I hope you find this interesting. You, like me, have the right to learn to read and I hope that reading is a source of as much pleasure to you as it is to me!

There are a number of myths that may result in inappropriately low expectations and unnecessarily limited learning opportunities. 

In this series of blog posts I address six of these myths concerning (1) receptive and expressive language (what we say and what we understand), (2) phonological awareness and phonic decoding (awareness of sounds and applying these to reading), (3) functional reading or reading for pleasure and learning, (4) ‘reading readiness’ or (non)linear development, (5) optimal learning age and, (6) reading comprehension. These blog posts draw on a recent paper published in the Australian Journal of Teacher Education. I have included a link to the full paper at the end of the blog post for those who are interested in reading more on these topics. I would like to express my thanks to the editor of the journal for permission to use the paper in this series of blog posts. Many thanks also to all of the people with Down syndrome, families and teachers who have allowed me to share in their journeys and from whom I have learnt so much.

The  first blog post addressed receptive and expressive language (what we say and what we understand). In this blog post we move on to phonological awareness and phonic decoding (awareness of sounds and applying these to reading).


Joel read the prayers of the faithful at his aunty's wedding

Phonological Awareness and Phonic Decoding Skills

Myth #2: People with Down syndrome cannot develop phonological awareness and phonic decoding skills.
Reality: As demonstrated through a growing body of research, people with Down syndrome can and do develop phonological awareness and phonic decoding skills.

While there has been a great deal of debate about a ‘phonics’ versus a ‘whole language’ approach to teaching reading, both in relation to teaching reading in general, as well as in regards to teaching reading to people with Down syndrome, childhood phonological awareness has been found to be the best single predictor of later reading success.

Phonological awareness can be defined as an individual’s ability to consciously focus on the sound structure of language. For example, the ability to identify the syllables in a spoken word.

Friday, 12 July 2013

'Teaching reading to people with Down syndrome: Busting the myths' - a series of 6 blog posts

Dr Kathy Cologon is a researcher at Macquarie University, in Sydney. Following publication of her recent academic paper (reference and link below), addressing some common myths about reading development in children with Down syndrome, Kathy has written a series of blog posts explaining the research for a wider audience. The images accompanying the posts have been generously contributed by Down Syndrome NSW members. Kathy's posts will be published here each Friday, for the next six weeks. We thank her for taking the time to provide this important information to our readers.


Charlie and his grandfather, Willem, love to read
Myth buster #1: More than meets the ear!
Kathy Cologon, Macquarie University

In recent research the mother of a 5-year-old girl who has Down syndrome shared with me this vision of her daughter as a reader:
“I want her to be a reader. Not just for bus timetables [or] stop signs, but a real reader, like to really love reading books for fun and to learn.”
Like so many other family members I have met, this mother is enthusiastic to support her daughter’s literacy learning. In the not so distant past, this would not have been considered possible. However, there is no question now that for this little girl, reading for pleasure and learning is a realistic and achievable goal. Unfortunately though, there are some remaining myths and misunderstandings that make working towards this goal harder for this little girl and her family than it should be.

I am writing this series of blog posts to parents and teachers in the hopes of supporting ongoing and appropriate literacy learning opportunities. However, I am aware that many people who have Down syndrome may also be reading this – if you are I hope you find this interesting. You, like me, have the right to learn to read and I hope that reading is a source of as much pleasure to you as it is to me!

Monday, 5 November 2012

Research news

UK study of reading intervention with children with Down syndrome published
The Down Syndrome Education International reading intervention research study has been published, and is available in full, online:

Kelly Burgoyne, Fiona J. Duff, Paula J. Clarke, Sue Buckley, Margaret J. Snowling, Charles Hulme, Efficacy of a reading and language intervention for children with Down syndrome: a randomized controlled trial, Journal of Child Psychology and Psychiatry, Volume 53, Issue 10, pages 1044–1053, October 2012

Registry connects people with Down syndrome with researchers
A registry of patients with Down Syndrome has been commissioned in the US, that '... will facilitate contacts and information sharing among families, patients, researchers and parent groups,' and 'Ultimately, the registry will be able to link to biorepositories of tissue samples and other resources, with the goal of making it easier for patients to take part in clinical studies for new medications and other treatments for Down syndrome.' Creation of the registry, will be funded by the US national Institutes of Health, through the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). 
NIH media release, 26th October 2012

Linda Crnic Institute for Down Syndrome Announces $1 Million in Major Challenge Grants
The Linda Crnic Institute for Down Syndrome at the Anschutz Medical Campus in Aurora will jump-start research benefiting people with Down syndrome by presenting scientists with $1 million in grants.

The grant program, called the annual “Crnic Major Challenge Grants,” is funded with money from the Anna and John J. Sie Foundation, the Global Down Syndrome Foundation, the Chancellors of the Boulder and Denver campuses and the Dean of the School of Medicine. Under the program, the Crnic Institute will award grants of up to $100,000 a year to scientists across research disciplines at the CU-Boulder and Anschutz campuses.

Dr. Tom Blumenthal, Executive Director of the Linda Crnic Institute, is optimistic about what this will do for the field. “I believe we will attract the best and brightest scientists with innovative scientific proposals,” Blumenthal said. “Most important, we expect the science will clearly benefit people with Down syndrome.”

A key criterion for applying for the Crnic Major Challenge Grants will be attending an annual symposium with keynotes providing the latest information about research in the field of Down syndrome. This year’s symposium is scheduled for Friday, Oct. 19, at the Anschutz campus, and about 150 people are expected to attend. The symposium will educate CU researchers about the current knowledge of the causes and properties of Down syndrome in order to spark interest in turning research in the direction of studying the most commonly occurring genetic condition, affecting one in every 691 births in the U.S. The research also will aim to improve the lives of people with Down syndrome through enhanced medical care and cognitive improvement.

Monday, 20 September 2010

DownsEd web seminars and courses: timetable for September 2010 - June 2011

Down Syndrome Education International offers online information events in a number of formats, some free, some with a fee.

Free online advice sessions
A timetable for free online advice sessions taking place from to the end of the year is now available. Topics include reading, literacy, inclusion and the See and Learn programmes:


http://blogs.downsed.org/downsed/2010/09/free-online-advice.html?dm_i=9MS,8UO0,10ZI37,N47H,1

Web seminars and online courses
A timetable of events from now until June 2011 is now available:
www.downsed.org/en/gb/online/webinars/timetable.aspx

Times scheduled are generally during the day in the UK.  To convert times to Australian (or other international) time zones, visit: www.timeanddate.com or www.timezoneconverter.com/cgi-bin/tzc.tzc or Google 'international time zone converter' for a similar site.

Monday, 19 October 2009

thefuntheory.com

These videos have nothing to do with Down syndrome or any other disability - The Fun Theory is actually a European design competition, but they are great examples of adapting the environment to support desired behaviours by the people who live in them.

"This site is dedicated to the thought that something as simple as fun is the easiest way to change people’s behaviour for the better. Be it for yourself, for the environment, or something entirely different, just so long as it’s change for the better."

Look, laugh and think about the principles that we could apply in everyday life - we don't always need such high tech responses (although these ones really are fun) ...... but we do sometimes need reminding of the principle.

Sunday, 16 August 2009

Case studies - addressing challenging behaviour

Young children with Down syndrome and their parents can face numerous challenges arising form developmental, cognitive and communication impairments leading to behaviour that is outside the norm for the child's chronological age. Communication development can be more delayed than cognitive development, leading to behaviour arising from frustration with communication.

Parents and early childhood professionals will find this paper useful in providing strategies to support the child, eliminate or prevent behaviour that is often described as "challenging", and describing real cases where particular strategies have been applied in managing particular behaviours:


Kathleen Feeley and Emily Jones, Strategies to address challenging behaviour in young children with Down syndrome, Down Syndrome Research and Practice, Volume 12, Issue 2, October 2008

It is one of many excellent resources freely available online from Down Syndrome Education International's online library: www.down-syndrome.org

Wednesday, 22 July 2009

Speech and Language Resource Guides from NDSC and Dr Libby Kumin

The following Speech and Language Resource Guides for individuals with Down syndrome have been generously provided to the US National Down Syndrome Congress (NDSC) by Dr. Libby Kumin and Loyola College of Maryland, and NDSC has generously posted them to their website. Dr Kumin is the author of a number of highly regarded books and DVDs on Speech and Language development in people with Down syndrome of all ages, and one of the world's leading researchers and clinicians in the field.

These are short guides, with references to more comprehensive information sources:
The NDSC website is a rich source of specific information for parents and professionals, and well worth book-marking. In Depth Parent Resources on other topics are located here - some are relevant only to the US, you will easily see which ones they are. Those under the link "DSN articles" are reprinted from the NDSC newsletter, Down Syndrome News (our library includes a print subscription).

Monday, 6 July 2009

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

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

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

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

Triple P can help you:

  • create a stable, supportive, harmonious family environment

  • teach your children skills to get along with others

  • deal positively, consistently and decisively with problem behaviour

  • encourage behaviour you like

  • develop realistic expectations of your children and yourself
    take care of yourself as a parent.
Every Wednesday, starting 5 August 2009 (four-week program), 5:30 – 7:30pm

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

RSVP by Wednesday 15 July

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

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


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

Tuesday, 16 June 2009

DADHC workshops available to Northern Metro families

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

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

Makaton Basic Workshop
9:00am - 4:30pm Monday 13th July 2009
Achieve Foundation Eastwood, Level 4 – 2 Rowe Street, Eastwood

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

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

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

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

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

Friday, 13 March 2009

Smile for life: training on oral care

Training about oral care for people with special needs designed for care-givers of people with intellectual disabilities (funded by Sydney West Area Health Service and NSW Health)

• What is it?
A half day inservice with a basic introduction to oral diseases, oral care (Special Needs Dentist) & diet (Dietitian), including a hands-on workshop.

• Where is it?
Westmead Hospital, Education Block.

• When is it?
Every 4th Thursday, 0900 -1230 hrs.
(23RD April; 28th May; 25th June)

• How much is it?
Free! (morning tea included)

• Would you like to book?
Contact:
Myrna Barcelon (02) 9845 5524 or Siva Premkumar (02) 9845 7019
Emails:
myrna_barcelon@wsahs.nsw.gov.au sivagami_premkumar@wsahs.nsw.gov.au

Fax: (02) 9845 5740


*Certificates of Attendance will be provided.



Click here to download the official brochure.

Friday, 13 February 2009

Visual supports work for adults too ......

Linda Hodgdon is a speech and language pathologist who specialises in working with people with autism, particularly using visual supports for communication. She says on her home page,


My passion is to find simple solutions to communication challenges.


Much of her work is also valuable for others with communication disorders, including those with Down syndrome. Among a range of excellent resources on her website, the monthly online newsletter, Another View always provides useful insights and tips.


The current issue (February 2009) includes Visual Supports Are Not Just for Little Kids a concise and straightforward explanation of how and why visual supports work for adults as well as children, along with helpful tips about making them acceptable to an adult user.


As Linda says: Do YOU ever look at your own calendar or day planner to help you remember what is happening in YOUR life?

Combining Linda's insights with everyday technology for adults might be another way of making acceptable, non-intrusive visual supports - see this post about using an iPod, for example.

A list of DS NSW Library items on visual learning and support is here.

Wednesday, 21 January 2009

Disabilities and dementia: Diana Kerr, UK expert to visit Australia

Alzheimer’s Australia NSW is bringing Diana Kerr to Sydney for a one day seminar.

Monday, 6 April 2009
Parramatta
(venue to be confirmed)

As the population ages the number of people with disabilities and dementia will increase. We know that older people with Down syndrome are uniquely vulnerable to developing dementia of the Alzheimer type. Service providers, families, doctors and social workers need to be equipped so they can develop appropriate interventions and coping strategies.

Diana Kerr is a leading figure in this area in the UK working at Edinburgh University. She is the author or co-author of several publications including:

  • Down Syndrome and Dementia, A Workbook for Staff

  • In the Know: Implementing Good Practice

  • Understanding Learning Disability and Dementia - Developing Effective Interventions

Please email education@alznsw.asn.au to register your interest in this timely and important seminar.