Confessions of a non-private-speechie

I am a speech pathologist*.

I do not want to own a private practice#.

There, I said it.

Ok, here’s what you probably need to know:

• Australia is working really hard right now to bring in a new system of supporting people with disabilities
• This new system is called the National Disability Insurance Scheme (NDIS)
• One** of the biggest changes is where the money comes from and goes to
• In the past, most*** of the money came from the state government and went to organisations
• In the future the money will come from the federal (Australian) government and also the state government and it will go straight to people with disabilities****
• People will be able to spend their money with organisations like they used to, or hire private businesses or even hire their own staff
• In NSW, the state government owned service for people with intellectual disabilities will close down

So what? You might say…

Well, this is a big deal and it’s exciting and scary and inspiring and exhausting and thrilling and overwhelming all at the same time.

As a speech pathologist I get asked weekly “Why aren’t you in private practice? There’s lots of business out there!”. 

But there’s a reason I’m not in private practice. I am not good at it and (probably more importantly) I don’t enjoy it. It takes a lot of time, energy and bravery to step out in business. How do I know this? I’ve been there before. And I don’t want to go back. Here’s why...

1- There’s no “i” in team

When I have worked as part of wonderful interdisciplinary teams (that is, teams with occupational therapists, early education teachers, psychologists, case managers and more), I have relished in the incredible value that each discipline contributes to the other. What good is it if I could teach someone to make a request, but they can’t sit up to look at another person? What’s the point if I can help a fussy eater to try new foods if they don’t have the wheelchair that means join their family at the table? Working in teams like this is fundamental to good support for people with disabilities.

2- Therapist generalisation alert!

I am a therapist. Therapists love to help people to achieve their goals. We don’t like giving people bills for doing what we love. The philosophies of business and therapy often contradict each other, creating a paradox that some of us would rather avoid.

3- Our friends: freedom and responsibility

When you run your own business there is great freedom! But there is huge responsibility. When you are the boss, there’s no red tape! Imagine that! You have a good idea… BAM! It’s implemented! However, the pressure to grow, achieve, profit and constantly project a positive image in business is a burden. One unhappy customer can mean thousands of dollars in lost business. That is a burden I’ve borne before and I take my hat off to those who can bear it.

Of course, I understand that none of these reasons should necessarily stop me from running my own private practice. But, for now, it's not for me.

I'd love to hear about what other speechies think on this topic! Why or why aren't you in private practice?
I'd love to know what non-speechies think too! Do you think there should be more speechies in private practice?

* That's what we're usually called in Australia

** There's lots and lots and lots of changes. This is just one of them. Here's where you can find more information http://www.everyaustraliancounts.com.au/faqs/so-how-is-the-ndis-different/

*** But not all...

**** http://www.ndis.gov.au/people-disability

# I reserve the right to change my mind at any time!

#AGOSCI2015 Tweets up a storm!

I had the privilege of attending the 12th Biennial AGOSCI Conference from 14 - 16 May.
For more information about AGOSCI visit www.agosci.org.au
The conference was well attended by people who tweeted a fantastic amount of interesting information from the sessions they attended! Here's the stream of consciousness that resulted... enjoy!

#AGOSCI2015 Tweets

Oh dear... has it really been that long?

I hear people saying it  all the time: "where does the time go?" and I only just stopped myself from saying it after I realised how long it's been since I posted anything here!

It's not because of anything catastrophic, and it's not because I've stopped reading the literature that is relevant to my work! 

I dived in once and swam for a bit, I can do it again! 

I've been reading lots about AAC lately as well as dementia and also some interesting articles about key word sign and gesture! I'll try my best to share what I've learned (because sharing is caring right?!?!?)

Research Tuesday: Plain language and clear communication!

I wrote the original blog post below in September 2013. I thought it was fitting to use it during my week of curating the #WeSpeechies handle in Twitter in October 2014.

You may have noticed that I'm quite passionate about the importance of plain language and clear communication (although I'm not always perfect at it myself!). 

During the week starting 5 October I will share:
- my favourite resources
- some of the research I have found
- my favourite examples of language that is very NOT plain
- and much more! 

I'd love to know about:
- your favourite resources 
- any articles you have found on the topic
- and your favourite examples of bamboozling language!

Cheers
@SP_Harmony (being @WeSpeechies for a week)

_________________________________________________________________________
9 Sept 2013

I found a fascinating article on the topic of communication competence and Augmentative and Alternative Communication (AAC). I was prepared to blog about this article for this month’s 'Research Tuesday'...

‘Communicative competence’ in the field of augmentative and alternative communication: a review and critique

Teachman, G. and Gibson, B. E. (2013), ‘Communicative competence’ in the field of augmentative and alternative communication: a review and critique. International Journal of Language & Communication Disorders.

I've spent a couple of weeks browsing through the article and have finally decided that I need more time with it. The main reason that I need more time is that this article is written in a language that is definitely NOT plain!
For example:

“In critical work, dialectical relationships are acknowledged between the micro-level of the individual and their macro-level social, political and economic contexts.”

I've said it before, and I'll say it again: I find journal articles very difficult to read. Even the plainer ones! That one is not one of the plainer ones.

So this blog post has been diverted to a different cause... Plain Language!

I have found much of my work time diverted to the topic of plain language and accessible information. I presented on this topic at a conference last May. I recently presented a lecture to 2nd year speech pathology students. I'm preparing a workshop for a conference in November. I occasionally tweet about plain language and often scour the internet for everyday examples of unnecessarily complex language.

I've been on the hunt for evidence that writing in plain language is effective and came across this book:

Writing for Dollars. Writing to Please.

Bingo! 

Unfortunately I don't have this in my hot little hands. So the article below will have to do.

Health in the 'hidden population' of people with low literacy. A systematic review of the literature.

Easton P, Entwistle VA, Williams B. Health in the ‘hidden population’ of people with low literacy. A systematic review of the literature. BMC Publ Health. 2010;13:459.

Why I chose this article (apart from what I've already said)...

I haven't come across anything before that discriminates health literacy from functional literacy. I think there's a lot more to this topic than meets the eye and it's something we all need to think more carefully about.

The definitions:

Health literacy is defined as:

“the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health”

Functional literacy is defined as:

“the ability to read, write and speak in English, and to use mathematics at a level necessary to function at work and in society in general”

The authors state that low levels of either functional or health literacy mean poorer health outcomes such as knowing what medications to take and when. It’s difficult to tell which type of literacy (health or functional) has more impact. It is possible for a person to have good functional literacy but not good health literacy.

So who are the 'hidden population'? People who have well developed oral skills but poor writing and reading skills.

“Several studies have shown that health care staff often do not recognise health literacy difficulties among working age adults who can engage in spoken conversations in the dominant language”

The results:

The authors tell us that many of the studies that met their inclusion criteria did not do a good job distinguishing between functional vs. health literacy. Many of the tests used in the studies were a mixture of the two.

Here's some of the statements they could make though:

• "There is some evidence... that lower functional or health literacy is associated with poorer health status..."
• People with lower literacy levels were able to make initial contact with health services, but seem to have poorer patterns of using services and seeking treatments.
• People with lower literacy levels are more likely to be more distressed about a diagnosis (acknowledging that this is not a health outcome but that it can have an impact on a person and their health)

Complex areas requiring further study:

• Health risks or conditions as a mediator health literacy and health behaviour.
• Relationship between literacy and self-management of health problems.
• Relationship between literacy and health promoting or health risk behaviours.

Clinical bottom line:

People with lower levels of literacy are more likely to have poorer health outcomes. Be aware that there is a 'hidden population' of people who may not reveal their literacy difficulties and it may not be obvious to us in the health care system.
Most of the studies included in the review were US based, so findings may not be generalised to other countries with different health systems.
The authors also refer frequently to the stigma of poor literacy and the barrier this creates. 

What we can do:

We can make our written materials more accessible by applying the principles of plain English!
1. Use an average sentence length of 15-20 words.
2. Use everyday words
3. Use first and second personal pronouns
4. Use active sentences, not passive ones
5. Use verbs and adjectives, not nominalisations (or 'nounisms')

Our audience (clients, patients, families, carers...) is more likely to understand when we write using plain language principles. The more they understand, the more likely they will engage with you and follow your recommendations.

Here's some resources that might be helpful:

Accessible Information Checklist (Ageing, Disability and Home Care, NSW, Australia)
Plain language guidelines (US): Federal plain language guidelines
Plain language thesaurus: http://www.plainlanguage.gov/populartopics/health_literacy/Thesaurus_V-10.doc
Easy English Guidelines: http://www.scopevic.org.au/index.php/cms/frontend/resource/id/193
My Little Bag of Writing Tricks (Rachel Toor, The Chronicle of Higher Education)

Research Tuesday - Pica

The Article

Pica in persons with developmental disabilities: Approaches to treatment.

Johnny L. Matson, Megan A. Hattier, Brian Belva, Michael L. Matson

Research in Developmental Disabilities 34 (2013) 2564 - 2571.

http://www.sciencedirect.com/science/article/pii/S0891422213002023

Why did I choose this article?

Since pica is usually described as a challenging behaviour you might be wondering why a SLP might be interested in the topic enough to blog about it. Basically the links between communication and behaviour and eating and drinking are all quite close and many SLPs working in the disability sector will probably encounter the challenging behaviour of pica at some point in their careers. This might be because no one has identified it as a problem before or people think that because the person is eating, a referral to the SLP is the best option. The treatments described in this article are very much the domain of the psychologist, so if you're supporting someone with pica, hopefully you will be able to work collaboratively with a psychologist.

During my career I have supported people who were interested in chewing, eating or just storing non-food items in their mouths. Items included sticks, rocks, leaves, plastic, cloth, pencils, paper, hair and metal. I've also met people with complications from 'gastric bezoar' which is a collection of material in the gastrointestinal tract: http://www.uptodate.com/contents/gastric-bezoars

What is pica?

Pica is defined by the authors as repetitively ingesting (eating) items with no nutritional value (eg. paint, hair, dirt, cigarette butts etc). They report that the DSM IV definition states that pica is the persistent eating of non-nutritive items for at least 1 month and the behaviour must be developmentally inappropriate and not be part of a culturally sanctioned practice (American Psychiatric Association, 2000). 

I'm unaware if this definition has changed in DSM V. http://www.dsm5.org/Pages/Default.aspx

Pica can have serious implications for a person's health and wellbeing.

What types treatments currently exist?

Positive procedures:
- Environmental enrichment

- Reinforcement

- Biological interventions

   - Pharmacotherapy

   - Nutritional supplements

These authors provide quite descriptive analysis off all the published treatment approaches. This can be complicated because most interventions have multiple components.

Punishment procedures:

- Aversive stimuli

- Work and effort procedures

   - Overcorrection

- Restraint

   - Mechanical restraint

   - Physical restraint

- Time out

- Response blocking/interruption

Punishment procedures have faded from clinical use over time. Studies showing the efficacy of these procedures were mostly published during the 70's and 80's. 

The Bottom Line

ABA (Applied Behaviour Analysis) approaches provide by far the most compelling research evidence to date. This has been recognised in the literature for some time now. This article reported on >30 studies using ABA to treat pica. 

The authors add "It makes sense to start with the least intrusive methods first including functional assessment and reinforcement."

Some More Thoughts...

This article is not a "How to..." for helping people who have pica. It doesn't provide in depth information on the quality of studies. If you don't know much about ABA you'll need some additional reading to work in this area. After reading this I find myself wanting/needing more information to help me add this knowledge to my practice.
Also, the quality of the studies in this area is unclear. The authors refer occasionally to case series and some single case experimental designs, but it is difficult to glean the overall quality of studies in this area.

Now, off you pop! Read it yourself and let me know your thoughts.

Blogging about research - Is surgery the answer for people with cerebral palsy who have trouble eating?

Already I am learning so much from the #SLPbloggers and by blogging about research myself! The summary for last month by Rachel Wynn is HERE.

And below is my offering for this month. A totally different subject to last month, but a topic that has come up so often in my work in the last 10 years. 

Article: 
Ferluga, E. D., Sathe, N. A., Krishnaswami, S. and Mcpheeters, M. L. (2013), Surgical intervention for feeding and nutrition difficulties in cerebral palsy: a systematic review. Developmental Medicine & Child Neurology.
CLICK HERE TO READ THE ABSTRACT
Here is the entire review from AHRQ. This full review looks into other, non-surgical therapies and their effectiveness. 

Clinical bottom-line:
The abstract for this article is very succinct and sums everything up with this simple sentence...

Evidence for the effectiveness of surgical interventions is insufficient to low.

There is more to be learned from the detail but what the authors are telling us is that there are not enough studies with quality data that show outcomes from surgical intervention. Their literature search produced many single series studies, which is problematic. Single series studies are the most common study design in the disability field, however the risk of bias can be very high. Despite the risk of bias, the authors chose to include a number of case series studies as there was only one prospective cohort study.

What does this mean for our practice?
Conveniently, the authors tell us "what this paper adds (to our knowledge base)"!

- Not many studies provide data on the effectiveness of surgical intervention
- Gastrostomy consistently leads to weight gain
- There are often adverse effects after surgery (including reflux or respiration problems)
- We still don't understand the balance of risk related to surgery and risks of not treating

The interesting bits
Background
Chronic pulmonary disease related to aspiration is a leading cause of death among patients with severe CP.

This article starts with the information that we already know on this topic. We know that the severity of motor impairment (rated via the GMFCS) is linked with feeding problems.

The cyclic nature of feeding problems appears like this...
That is, feeding problems place a burden on carers resulting in stress and fatigue, which unavoidably impacts on the feeding situation.

The data
Studies focused on children.
The authors were looking for data on outcomes in:
- Growth
- Nutrition
- Swallowing
- Hospitalisations
- Antibiotic use
- Quality of Life (the person and/or their carers)
- Satisfaction and stress (of the person and/or their carers)
- Reflux
and adverse effects such as:
- Aspiration
- Gastrointestinal problems
- Respiratory problems
There were few studies that reported on many of these items. Most seemed to focus on weight and growth measurements, overall health (and hospitalisations) and QoL.

Treating Reflux
Two studies focused on surgery for treatment of reflux for people with CP - one randomised controlled trial (RCT) and one case series.
The RCT randomised 14 children to either fundoplication or gastric plication. Both groups showed clinically significant improvement in reflux symptoms.
The case series focussed on Nissen fundoplication by either laprascopic or open approach for 20 children. Reflux an pH monitoring were reported to improve in both groups, however 6 patients had a relapse of symptoms and complications were reported for both groups.

Adverse Events
Three studies focused on analysing adverse effects and two of these found studies fround associarions with outcomes such as overfeeding and reflux. The links between adverse events and risks associated with not intervening are unclear and the authors recommend careful consideration on a case by case basis.

Now, pop down to your library and find the article to read for yourself! As always I recommend that you read this with a critical mind and a questioning eyes.

Communication and behaviour - Does AAC help?

Blogging about Research (and hoping it will give me some kind of super powers)

(Disclaimer: I am not the-world's-greatest-reader-of-research-papers and I am learning-as-I-go. With this in mind, please read this with a critical mind and a questioning eyes... then read the article yourself!)

Article: Effects of Augmentative and Alternative Communication on Challenging Behaviour: A Meta-Analysis. Virginia L. Walker & Martha E. Snell, 2013
http://informahealthcare.com/doi/abs/10.3109/07434618.2013.785020

Why did I choose this article?

In my work 'challenging behaviour' (or 'behaviours of concern') are very common. When supporting people with intellectual disability and those that care for them, behaviour becomes a regular part of conversations. Not all the time, but often.
This article, and the studies it analyses, help us to take steps towards providing better supports and having a better understanding.
The information I have learned from this article will not drastically change my practice, however there are gems of information that will definitely improve the quality of my practice (and the practices of the people I supervise). I also feel more confident about the way I provide supports to people with behaviours of concern!

Clinical bottom-line:

(In the words of the authors) "this review provides evidence that AAC intervention has positive effects in decreasing challenging behaviour for individuals with varying disabilities"
(In my own words...) Using AAC as part of intervention for people with challenging behaviours will give us a greater chance of addressing those behaviours. It is noted that for best results we need to start as early as possible and there should be a functional behaviour assessment (FBA) and also functional communication training (FCT).

The interesting bits (well I thought so, anyway...)

About the participants...

- There were 111 participants
- 71% of participants were male
- 70% were under the age of 12 years
- The most common diagnoses were intellectual disability or developmental disability and Autism spectrum disorder
- Before 37% used speech and 32% used non-symbolic communication
- Where people were using AAC before the study the most common type was unaided AAC (such as key word sign) and then aided AAC without speech output

About the interventions...

- the majority of interventions happened in classrooms, was 1:1 and included aided AAC without speech output 55% of the time
- Intervention was usually FCT (functional communication training - visit http://www.scopevic.org.au/index.php/cms/frontend/resource/id/622/ for information about FCT)
- The majority of studies didn't measure generalisation (changes outside the therapy situations) or maintenance (how long the changes lasted) or social validity (whether the intervention was acceptable and useful)

About the results...

- The effect of interventions overall was positive
- The effects were not influenced by participant, intervention or outcome characteristics
- AAC seems to be an effective intervention for many people who have behaviours of concern in many situations
- AAC might more likely to be successful for people who have better language skills, but more research is needed on this
- Success gets harder to achieve as people get older (over 12 years of age)
- It is important to consider the function of the behaviour!

What is a 'meta-analysis'?

Cochrane describe a meta-analysis as "... use of statistical methods to combine results of individual studies..." http://www.cochrane-net.org/openlearning/html/mod12-2.htm
This seems to be particularly helpful in groups where there is a lot of variation or diversity (heterogeneous populations), such as people with disabilities.
This meta-analysis looked at 54 studies (from a possible 355 articles originally identified by the inclusion criteria. After reading the abstracts of the 355 articles (almost my worst nightmare!) all but 81 were excluded. After reading the full text of those 81 articles another 27 were excluded.
All of the articles were single case experimental designs (SCEDs).

What is a SCED?

SCED = Single Case Experimental Design
aka, Single Case Research design
aka, N=1
Historically this type of study has not been highly regarded in rating scales, however with a well planned experimental designs (meeting criteria of high quality SCEDs) these studies are gaining credibility.
Here is more information about SCEDs if you're interested: http://ies.ed.gov/ncee/wwc/documentsum.aspx?sid=229 (thanks to @BronwynHemsley for the link)