Blueprint Family Support Project  
   
 

COMMUNITY

While specialist services and resources are essential to the well being of children with complex disabilities and their families, being included in everyday community life is also very important.

The different understandings of disability in the community can make this difficult. Some people only see the disabilities not how children with complex disabilities are experiencing the world, how they are feeling, learning and growing.

"It must be remembered that these are children - not adults. They have a future - but they live mostly in the ‘here and now’. This shows through a clear individuality in their expressions and character.

Life satisfaction for these children is about feeling both happiness and contentment. This should be ‘day-by-day’, because their lives are mostly experienced one day at a time. Contentment for these children can be ‘just taking it all in’. It’s about a personal balance.

Life satisfaction is also about comfort and wellbeing. Physical health is so important when acute and/or chronic pain is so prevalent, so daily wellbeing - just having a good day - is valued.

Central to this wellbeing are relationships with others and belonging with others. Life satisfaction for these children is also doing and having favourite things. This is often about: being with others - caring and sharing; doing special things - with special people; the freedom, fun and belonging of playing in water; and enjoying a wicked sense of humour!"
~ Gordon Lyons, 2005.

While State and Commonwealth legislation makes it unlawful to discriminate against a person with a disability, children and their families may still experience many barriers to participating in community life. The stories of parents/carers reveal the many barriers and struggles experienced by families. Excerpts of some of those stories can be viewed in the Blueprint resource Threads, Connections & Pearls of Wisdom.
This page contains information and resources intended to help reduce these barriers.


Threads, Connections and Pearls of Wisdom
The link here opens a pdf version of the Blueprint Resource "Threads, Connections and Pearls of Wisdom" in a new window. You can download and print the resource, or you can order hard copies at no charge by telephoning (02) 4784 2323 or via our online contact form on the home page.
Opening The Doors - the hidden life of carers
Holdsworth Community Centre have published and released a compilation of carers stories, with many accounts of being a parent of a child diagnosed with a disability.
On public sale for $15 (inc postage) by contacting info@holdsworth.org.au or by calling (02) 9302 3600.
Also available for $12 if collected from the Centre or from Gleebooks.
Between joy and sorrow:being a parent of a child with a developmental disability: Kearney P.M. & Griffin T.(2001)
A study exploring the experiences of parents who have children with significant developmental delay
(NB: due to technical difficulties, the attached file was not viewable for sometime, but it is now accessible. Apologies for the delay in rectifying the glitch)
File Link: JoySorrow(1).pdf
Accessible Arts NSW
Accessible Arts is the peak arts and disability organisation across New South Wales.
Accessible Arts promotes and provides opportunities for people with disabilities to participate in arts and cultural activities either as audience members; through attending galleries, theatres, museums and festivals; or as participants in art, drama, music, dance and multimedia activities; and by developing as professional artists.
The Nature and Impact of Caring for Family Members with a Disability in Australia
Jointly conducted by the Australian Institute of Family Studies and the Department of Families, Housing, Community Services and Indigenous Affairs, the 140-page report examined the results of a survey undertaken in late 2006 of over 1000 carers receiving government payments.

Just Like Us (pdf 1.14mb)
Resource for Student Representative Councils (SRCs) and Student Leaders (2001) (pdf 1.14mb) is a resource to promote the inclusion of students with disabilities in school communities
Carer Stories
Following FaHCSIA's release of the Carer Payment Report, this storybook was compiled documenting the experiences of 19 families who have a member with a disability and complex medical conditions. Touching stories accompanied by beautiful photographs.
(2.21Mb)
Tristan and Tiarna's life: A family's journey
A powerful paper presented by Maria Heaton at Every Child Matters, the National Conference on Children and Young People with Disability and their Families in 2008
Maria Heaton is the mother of three children, two of whom have been diagnosed with Lissencephaly, a severe intellectual and physical disability. She has worked to give them the experiences children of their age would have if they did not have a disability. Maria is a clinical nurse specialist with a Master's in Nursing Education
Parents for Inclusion website
Disability Education Advocacy Australia
Disability Education Advocacy Australia is a small business that provides people in the wider community with a better understanding into the needs, rights and concerns of people with disabilities.
FaHCSIA's Carer Payment (Child) Report
The Minister for Families, Housing, Community Services and Indigenous Affairs, Jenny Macklin, has released a report by the Carer Payment (child) Review Taskforce, which examines the effectiveness of support to carers of children with a severe disability or medical condition.
Click the link below to view and download the report. Hard copies can also be ordered by calling 1800 739 456 or email: carerreview@fahcsia.gov.au
About Having a Child with a Disability
Parents sharing their experiences of raising a child with a disability
Parents stories
The Association for Children with a Disability, Victoria 's magazine NoticeBoard includes 'real life' stories from parents and other family members of children with a disability. These stories are a source of great strength and support for families and are a valuable way to educate professionals, students and the general public.

Siblings of children with disability
A fact sheet produced by the Association for Children with a Disability