She happens to have cerebral palsy and luckily I have been hanging out with folks with speech intelligibility issues and who use power wheelchairs since I was barely able to talk and walk myself. My friend and I get on well. I admire her humour and tenacity. I think she just appreciates that I am not as clueless as most.
Clearly not all hospital staff have been as fortunate as me in being prepared to feel comfortable knowing how or what to do to support someone with a physical disability. They really didn't understand that she had no physical or langauge disabilities. It was painful to watch.
It is such a fine line between making sure that someone can advocate for themselves and not letting unmet needs go unaddressed for hours at a time.
Anyway, we snuck out during the non-visitor hours and wrote a letter that she wants the world to be able to read. She has asked me to remove her name but made it very clear that she wants this shared online.
Within a day, the staff started to shift and her basic care needs (being fed, being in her chair, being positiong properly in bed to sleep, being taken to the toilet) are now being mostly met. I don't blame the staff, but it is an incompetent system that doesn't prepare them to do better.
Her communication and social needs are still not being met yet though.
Enough about me - here is what she wants to share:
To whom it concerns,
My name is [name withheld by request] and I am a 57 year woman with cerebral palsy and no intellectual disability. I am a fiercely independent woman who is used to living alone with visiting care staff.
I had a planned stay in the MAPU for a couple nights.
I want to put a complaint in about the poor system for supporting disabled people in hospital
The system stinks. It has no idea how to treat people with disabilities. We are normal but depend on others for quality and respectful care.
All abled people make it difficult for us to be independent and in charge of our lives. My hopsital stay was another example of this.
People who worked with me didn't greet me and sometimes didn't even look at me.
People didn't listen and take the time to understand my needs or my words.
I didn't trust that people would come when I asked for help or rang my call button. It could be 15+ minutes without somone even saying "I'll be there soon." I didn't need to take priority, but I needed to know if someone had heard me. I can't indepedently go to them.
On Saturday morning, I was in pain and no one would move my legs.
If my friends and family hadn't have come in, I don't...
]]>Here is a link to my written submission which unfortunetely had a few typos as I ended up writting it an hour or so before the deadline, but I did my best to capture some of my observations of where improvements can be made. Ideally without upsetting all of the good things that are happening in school. 30 Sept 2021 school submission.pdf
And the original call for sumbisions can be found online at parliament
]]>This is to help inform Literacy Strategy and how it is linked with the other workstreams and curriculum refresh work that is happening with feedback request to be sent to Literacy.Maths@education.govt.nz
Here is a link to the slides from the Ministry of Education: Literacy Strategy Engagement Workshops - for web.pdf And more information on the Curriculum refresh can be found here https://www.education.govt.nz/our-work/changes-in-education/national-curriculum-refresh/
Tēnā koutou,
Thank you for all the collective work going into the curriculum refresh and updating the way we approach literacy in Aotearoa New Zealand
I saw a recent call for those of use working closely with students to share our insights on the following questions.
If you are interested in submitting your own letter, here is my draft based on their recent sample letter.
28 June 2020
Tēnā koutou
Thank you for your collective work and efforts around the Education and Training Bill and your ongoing commitment to making Aotearoa New Zealand's education system equitable, effective, inspiring, and positive for all.
I am particularly concerned about Sections 95-97 of the Education and Training Bill, which relate to school staff using physical force on children.
Enabling school staff to use of physical force on children is contrary to how we as a society have been moving to protect children from violence. We know that restraint is already disproportionately used on Māori and disabled children, and what had been proposed opened the door to further harming this vulnerable group.
Schools and kura should never be a place of trauma or violence for students nor teaching staff.
The proposed law is concerning as written. I understand a change to these sections will be put forward as a supplementary order paper.
Please consider maintaining the status quo in this SOP - by replacing the existing text in sections 95-97 with the text that is sections 139AC to 139AE in the Education Act.
This may not be the long term solution, but any rushed changes at this stage are likely to make the situation worse, not better, and invalidate the much needed guidelines on physical restraint that provide protection to children.
A long-term solution is needed - an appropriate approach from here would be to ask the Minister of Education and the Minster of Justice to convene a cross sector group to co-design a solution that works for all.
This group should as a minimum involve representatives of parents/whānau/carers, teachers, the disability community, Māori and children and young people. Professionals with specialised knowledge and insights regarding why behaviour can sometimes escalate in schools need to be including speech-language therapists, psychologists, occupational therapists, advisors for the deaf, etc.
For example, as a speech-language therapist I know of how important the concept of communication accessibility is to meeting our legal and moral obligations when it comes to education, particularly for students with speech-language-communication disorders, hearing loss, visual impairments, and other learning support needs.
If we empower our young people to reach their communication potential (and that all educators have the skills and support they need to teach and communicate with students with communication difficulties), the need for physical restraint could be dramatically reduced and in many cases completely avoided.
This would require that universal provision of augmentative communication supports, assistive technology, pre-service training, ongoing professional development, and access to speech - language therapy support in sufficient dosage be available in all schools.
For...
]]>We don't treat anxiety as speech-language therapists, that is beyond our scope of practice, but it can help to feel confident about how to respond when you see anxiety in a student or client. There is also a lot we all can inadvertently do that will add to the anxiety the person is feeling, which is something we want to avoid.
I leave it to the pyschologists and other trained mental health professionals to assess and treat anxiety conditions. It is tricky knowing whether anxiety is causing the communication challenge, the communication difficulty is causing anxiety, or both. Regardless, there are ways the rest of us can help make things easier for a person while others are treating the anxiety directly.
When the goal is relationship building or education, these are some tips that have served me well over the years. Typically when I adjust my own communication style, I can see a person relax and start taking more risks. When I see this, I try hard not to use praise or get too excited. I want the focus to be on them as a person and their contributions to the conversation, not on how they are communicating. In one moment it can be very brave to simply smile or look with one's eyes, at another moment saying a sentence could be super easy for the person.
I have learned the hard way that trying to conjole, prompt, or praise someone for going outside of their communication comfort zone typically backfires. Going slowly and let the person warm up and build a sense of a trust that everything counts with me... well that often leads to some great outcomes long term!
Here is a quick explainer video I made last year. Every person is different. Plus we fluctuate in how we are feeling and what helps in each situation. So with those caveats out there, here you go:
Credits:
We all have do some new things to keep each other safe. Currently it is not possible to be 100% sure if someone is or isn't contagious, however there are many simple things we can do to keep the risk low.
Please complete this form which asks for your name and best contact detail in case contact tracing is necessary. This information is kept confidential and separate from our other records. We will only use it if asked for it by the official contact tracers. We will delete this information after 4 weeks.
As part of this form, we also need to check that everyone is well and that no one has been exposed to COVID-19.
We cannot offer in-person sessions if YOU or anyone you have been in CLOSE CONTACT WITH (i.e., 1 metre for more than 1 minute, 2 metres for more than 5 minutes) is suspected of having the virus. This is why we need to ask you the following questions:
We will be carrying hand sanitiser, paper towels, and sanitising wipes for objects like iPads. We will also be limiting what we bring with us into sessions.
We would greatly appreciate being able to use a sink if possible. We will use hand santiser between our car and your front door.
We work with many people who are at risk of developing serious complications from COVID including diabetes and heart conditions. It is imperative that if we are exposed to COVID, that we can immediately cancel any future appointments with these families.
We can only do this if everyone quickly tells us if any one has been exposed to or becomes sick with COVID-19
We will continue to offer remote sessions through telepractice. This is open to everyone at any time. You do not have to give a reason.
Many families are prefering telepractice at this time for a variety of reasons. They are more affordable given that there are no travel costs. Some clients are finding this way of working to be more effective for their goals. It is possible to schedule shorter, more frequent sessions and it is more likely that we will have a time that fits your availability.
In person appointments are only possible if both you and our clinicians are symptom free and have had no known contact with COVID. If anyone isn't feeling 100% well or you have any doubts, we can easily switch to a telepractice session - just give us a couple hours notice so we can organise it.
]]>There are heaps of great resources out there, but here is mine in case anyone has someone who feels favourable towards an US accent with a video based handwashing demonstration:
Printable visual supports around steps of handwashing and when we need to wash our hands Powerpoint of steps from video.pptx
]]>This won't fix everything, but here are two videos demonstrating of how I use screen mirroring apps to connect my iPad based AAC to the laptop during a Zoom meeting.
Note - the Zoom host has to allow you to share your screen and this might not work if your teacher is currently sharing their screen.
Once you have a screen mirroring application installed (I am using Reflector 3) and after a bit of practice, I can connect my iPad and laptop in less than a minute. You need fine motor control and to be able to match 4 numbers - so if this is hard, you might need a support person to help set you up.
]]>Have you been wondering about your carbon footprint? I took some time this January to do some calculations (and discover some tools and resources) to see if the decisions I am making are lining up with my goal to reduce the carbon footprint of providing speech-language therapy in my community.
Speech-language therapists often drive A LOT. In 2019 I took some deliberate steps to try to reduce the carbon foot print of this key aspect of my work. I firmly believe in working with clients where they live, work, and learn -- but it is a lot of time driving. As part of my 2020 goals, I have been doing some maths around my carbon footprint .
The replacement of my older car for a newer, hybrid has dramatically reduced my carbon emission (based on an average day and using the closest car model that with C02 data available).
I then also calculated what the potential difference if I reduced my individual carbon footprint (but offloading it onto my clients) by switching from my current system of driving to clients and instead had people travel to me.
Assuming that each client would be driving a single roundtrip from home/school to my clinic (excluding the likely scenario of an additional trip between a parent's work and their child's school), that all families are driving a low emissions vehicle, and selecting a clinic location in Thordon, I would dramatically increase my carbon footprint if I switched to a central clinic location.
That helps me feel less guilty about the amount of driving I do. Clinically it makes the most sense, but good to know that it also makes better environmental sense if I look at the larger picture.
]]>Once again, we are collectively thinking about emergency situations. The most front of mind for me at the moment is the Australian Bushfires that have been raging for months now.
Here are a list of a few source of visual supports
Massachusetts's Show Me flip book, visuals, apps, and other tools
Sweden's incredible collection of symbol based boards over at http://bildstod.se/. Talklink have written up directions about how to switch the language to English and register
Temple University has another handy visual support to aid communication during emergencies. Here are some of their other preparation resources.
Here is a nice checklist of what an AAC user might need in their Go Bag
The AAC-RERC have put together a guide for emergency responders