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Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444


Thursday 12 February 2009

Library Thursdays: Safe and Secure

Thinking about what will happen to our children with Down syndrome after we die is never easy. Most of us try to avoid thinking about death but it does lurk in the back of our minds as something we really should attend to. New to our library this week is a great resource that helps us deal with this issue. Safe and Secure: Six steps to Creating a Good Life for People with Disabilities, Western Australian Edition (written by Al Etmanski with Jack Collins & Vickie Cammack, PLAN, 1998) is a step by step guide to planning for the future. The first edition of this book was written by the co-founders of Planned Lifetime Advocacy Network (PLAN). PLAN is a Canadian organisation formed by parents to support and advocate for families planning for the future. This edition has been revised with input from PIN (Planned Individual Networks Inc.) in Western Australia (a similar organisation to PLAN) to make it relevant to Australian families.

The six steps are: Clarifying your vision (deciding what you want), Building relationships (setting up support networks somewhat like Circle of Friends or what the Up, Up and Away project does), Controlling the Home environment (housing options), Preparing for decision-making (setting up supports for your child to make the inevitable decision he/she will have to make in life), Developing your will and estate plan (options with wills and trusts) and Securing your plan (benefits of organisations such as PLAN and PIN). Each section includes stories of WA and Canadian families--the processes they went through, the choices they made and how it all worked. Worksheets are included to help you think and clarify what you want, what your children want and how it can be achieved.

I think that it is a great book even if sometimes I felt that it was a plug for PLAN and PIN (which sound like great organisations and provide great models). It is a wonderful resource that makes it easier to get around to dealing with the future as well as gives ideas for creating programs that will improve our children's options.

Other library resources from PLAN:
A Good Life: For you and your relative with a disability by Al Etmanski (2000).
The Ties that Bind DVD (2004) Follows a young man and his family planning the future. (Companion website http://www.tiesthatbind.ca/)

To borrow these or any other library resource, click here.





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