Hospital passport

The UK’s National Autistic Society has some great resources, including this hospital passport.  It can be completed either online then printed, or in writing, in advance of any hospital visit- and I think would be good for any medical appointment.  As well as the usual personal details, medical history and contact details for the patient’s significant people, it includes boxes to describe how the Autistic person would like hospital staff to communicate with them, how the Autistic person communicates, experiences pain and communicates pain, and what causes distress. The guidelines document contains many questions to consider when writing statements to include in the hospital passport. For example, when considering how staff are to communicate with the Autistic person- do questions need to be short and specific, do you need things written down, is there a preference for pictures or symbols, will pointing/demonstrating help, will you need a lot of time to think about and answer questions?  The final page describes the five key principles of the Mental Capacity Act, and states “Because I have autism please do not assume that I do not have mental capacity”.

Self-advocacy and socio-economic factors

Judy Endow has written about two dental experiences- the first when she was a state medical insurance patient, and the second when she had private health insurance.  She used the same self-advocacy techniques in each case, but the treatment she received varied greatly.  She made a sarcastic reference about the need to teach self-advocacy skills based on a person’s socio-economic status- but the real issue is society’s attitudes towards poor people.

Compassion is dead

I found Compassion: an obituary to be a very realistic and moving post, outlining the history of compassion (eg during the Blitz and Miners Strikes), and the growing selfishness that portrays those unable to work as burdens on society.

Dole scrounger. Benefits cheat. Stoke people’s fears that somebody somewhere is getting away with it, and keep their attention away from the fact that so many who are in genuine need are denied assistance. That fear has replaced compassion. Instead of caring and ensuring that nobody goes without sufficient means to live, we are constantly being told that the most important thing is that not a single person gets more than their entitlement.

Recognising Invisible Disabilities

There are so many things I like about this post! It starts with a Youtube clip called “I’m Brianna Couture”, three girls all posing as 15-year old Brianna Couture, who all describe Brianna’s invisible disability- but it’s not till the end of the clip that the girls divulge which of them is the “real” Brianna Couture.

Too often, when discussing inclusion in faith communities, I have heard: “We don’t have any members (of our congregation) with disabilities, so we don’t really need to think about inclusion.” Really? There are NO members with disabilities? Watch the video again.

We don’t “do inclusion” for our members. Rather, creating an inclusive community is about being ready. When we wait until someone comes through our doors, often it is too late and the accommodations become reactive. True inclusion is proactive.

Pave the Way info session

Focal are hosting a free information session for parents and carers, on Sat 14 Nov, from 10am-1pm at their Ipswich office.  Focal arrange multiple different information sessions throughout the year- I have attended several, and have found them to be very well-organised and helpful.  I recommend joining their email list to keep up-to-date with what’s on.

This information session is run by Pave the Way, and is called “Planning for Now, Tomorrow and the Future”.  This presentation is available frequently throughout the year, in different places as listed on their website.  I found the information shared to be very useful- rather than playing ostrich about our loved one’s future, it is possible to plan a good life for them, and Aimee explained about some of the tools available to help with this, including normal and Enduring Powers of Attorney, Guardianship and Administration, wills, trusts, Special Disability Trusts etc.

Full information available in the flyer below.

Pave the Way Flyer _2015-10-14

Communication about disabilities

Disability Services Queensland has put together some great resources about how to communicate with people with disabilities, and additional tips about guide/hearing/assistance dogs.  Towards the bottom of the page, there are several links- two in particular are exceptional.

The first is “A way with words: Guidelines for the portrayal of people with a disability”.

The purpose of this booklet is to promote inclusiveness and the fair and accurate portrayal of people with a disability.  It is intended as an aid for professional communicators, such as journalists, writers, producers and broadcasters, and provides suggestions for appropriate language, interviewing techniques and media coverage involving people with a disability.  

While that description does sound rather dry, the booklet is very engaging and readable, with great cartoon illustrations throughout.  Some of the recommendations include emphasising individuality (eg emotions, interests, problems, talents, frustrations, faults and roles), not disability; avoiding superhuman or excessively emotive portrayals, and not focusing on the person’s disability unless it is important to the story. There is also a list of words to avoid, with acceptable alternatives.  One suggestion given was to use the phrase “uses a wheelchair” instead of “confined to a wheelchair” or “wheelchair bound”, because a wheelchair provides mobility, not restriction.

The other link that I found useful was the Medical Signing Board.  There are Yes/No/I Don’t Know options across the top, front and back models of the body in the middle, 15 options for medical issues on the left (eg hot, cold, vomit, headache, bleeding, broken, seizure), 12 communication options on the right (eg need more information, call someone, worried, too loud, hungry), and a visual 1-10 pain scale at the bottom.  The second page lists some things paramedics might do (eg blood pressure, take temperature, bandage, medicine), a short social story, visuals for wait/be still/calm down, and some interaction tips for the paramedics.  Very thorough- wish I’d had this for Abi’s last admission!