Professional Documents
Culture Documents
put users
in the
driving seat
U S E R - l R l E N D l Y
ISSN 1368-2105
summer oo
http://www.speechmag.com
Choice and
participation
The heart of
our service
Management
Cringe to credit
Professional
role
So much
to offer
From
PEG to
porridge
One mans story
Disability
and stigma
An unequal life
Conference
report
Collaboration
counts
My top
resources
Tips from people
with aphasia
vn a Stckerpack: Sae
Eatng and
Swaowng
Would you like easy access to materials
for personalised eating and swallowing
advice charts? Help is at hand in the
form of a pack of 44 re-usable
coloured stickers (covering diet,
fluids, medication, positioning
and general safety advice) and an
explanatory book, blank stickers,
photocopiable display boards and pro-
tective plastic covers. Developed by a speech and lan-
guage therapist and suitable for children and adults with any
eating and swallowing difficulty, the pack has been refined to
reflect the comments of staff involved in its six month pilot on
two hospital sites.
The Stickerpack normally retails at 50 but the Dementia Services
Development Centre is making TWO copies available FREE to
lucky readers of Speech & Language Therapy in Practice.
To enter, simply send your name and address marked Speech &
Language Therapy in Practice - Stickerpack offer to Marion
Munro, Publications Secretary, Dementia Services Development
Centre, University of Stirling, Stirling FK9 4LA. The closing date
for receipt of entries is 25th July and the winners will be notified
by 1st August.
The Stickerpack and a publications list are available from the
Dementia Services Development Centre at the above address,
tel. 01786 467740.
vlN the Dagnostc
Evauaton o Artcuaton
and Phonoogy (DEAP)
Are you looking for a
comprehensive, UK
standardised assessment
of articulation and
phonology that will
guide you towards the
most effective therapy?
The DEAP includes a
diagnostic screener
which directs you to the
main articulation,
oro-motor, phonological
and inconsistency
assessments as appropriate. Co-authored by Barbara Dodd, the
DEAP is for children aged 3 years 0 months to 6 years 11 months.
The normal retail price is 204.67 but The Psychological
Corporation is offering a complete DEAP kit FREE to a lucky
reader of Speech and language Therapy in Practice.
For your chance to win, simply write your name and address on a
postcard with the title DEAP Reader Offer and post to: Liz Akers, The
Psychological Corporation, 32 Jamestown Road, London NW1 7BY.
The closing date for receipt of entries is 25th July and the winner
will be notified by 1st August.
The Diagnostic Evaluation of Articulation and Phonology is
available along with a free catalogue from The Psychological
Corporation, tel. 020 7424 4512, www.tpc-international.com.
Josie Roy has scooped two prizes in the Spring 03 issue - the set of
four Bungalow software programmes from Propellor multimedia
and a copy of Speechmarks Semantic Workbooks! The other lucky
winner of the Bungalow software is Judith Hibberd (two pro-
grammes), and the other Semantic Workbooks go to Kevin Borrett
and Gill Sampson. Julia Hannah, S.M. Lines, Helen Broderick and
Lauren Court win Speaking & Listening Through Narrative (2
nd
ed)
from Black Sheep Press. Congratulations to you all.
Summer 03 speechmag
Just wanted to say that I think the website is
excellent. We have a returner to practice starting
with us, and I was able to use the index of
articles to point her in the right direction.
(e-mail from chief speech and language therapist Christine Mills)
In need of inspiration?
Doing a literature review?
Looking to update your practice?
Or simply wanting to locate an article you
read recently?
Our cumulative index facility is there to help.
The speechmag website enables you to:
View the contents pages of the last four issues
Search the cumulative index for abstracts of
previous articles by author name and subject
Order copies of up to 5 back articles online.
New article: Know the person, not the problem
Fiona Davis, a speech and language therapy student who
has a cleft palate joined a weekend camp for young people
with cleft lip and palate as a volunteer. While the many
activities and informal opportunities were appreciated by
the children, the benefits of a perspective beyond the clinic
are also clear.
Plus
The editor has selected the previous articles you might
particularly want to look at if you liked the articles in the
Summer 03 issue of Speech & Language Therapy
in Practice. If you dont have previous issues of the mag-
azine, check out the abstracts on this website and take
advantage of our new article ordering service.
If you liked...
Lorraine Speirs, see (009) Hickman, J. (Autumn
1997) ALD and dysphagia: issues and practice.
Val Levens, look at (037) Levens, V., Gooding, S. &
Gooding, J. (Autumn 1998) An adult with Retts
Syndrome: the feelings and outcomes.
Helen McFarlane, what about (088) Hamilton, L. &
McKenzie, K. (Winter 1999) Moving on: life stories.
Margaret White, try (138) White, M.: Uncharted
territory, (139) McCormick, C.: Shared care, (140)
Freeman, L.: An ever-changing story. All from
Winter 2000, How I manage progressive
neurological disorders.
Sarah Earle, see (060) Leonard, A. (Spring 1999)
Right From The Start: The end of the (bad) beginning?
The I CAN conference report, consider (181) Hall, A.
(Spring 2002) The early intervention gap can we
fix it? (Yes, I CAN!)
Also on the site news about future issues, reprinted
articles from previous issues, links to other sites of
practical value and information about writing for the
magazine. Pay us a visit soon.
Remember you can also subscribe
or renew online via a secure server!
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lnsde cover Summer o speechmag
Reader oers
Win the Diagnostic Evaluation of Articulation and
Phonology, Stickerpacks: Eating and Swallowing and
Speaking, Listening and Understanding - Games for
Young Children (p.13).
News / omment
( The heart o our servce
User involvement is not just the latest trend in service
provision but an essential part of getting any service
right for people.
How do we enable people with learning difficulties to
make more choices, participate more in their commu-
nity, and develop their skills and competencies? Speech
and language therapy has come a long way, but Helen
McFarlane is already taking the next step.
8 l know what peope need rom
my servce dont l'
Comparison, sharing and exploring perspectives
prompts lively debate. Actions can be agreed on -
which areas to target and how. However, in all of this it
is the process that is the most valuable. We need to
ensure we do not rush for outcomes at the risk of missing
out the gold that is revealed in getting to them.
Val Levensand her team have been seeking users views for over
10 years and, more importantly, changing services as a result.
++ Revews
Head injury, persistent communication difficulties, social
skills and learning disability.
+ l AN make coaboraton count
Collaboration that works combines strategic lead with
backup on the ground - hardly rocket science but, in
practice, we know how difficult it can be to achieve, and we
need to be aware of what works so we can do more of it.
Avril Nicoll attends the 7th I CAN national conference.
+( Nothng more to oer'
As a therapist it is very easy to feel daunted... we need to
take a step back, not to see a dysarthria needing therapy,
but to see the person with the dysarthria. We can sometimes
get too bogged down in the specific problem without
seeing the overall view. We should not only be dealing
with the problem but with the way this affects the person,
their groups and the way they live their life.
Drawing on quotes from her qualitative research, Margaret
White argues that we should be actively facilitating
and offering support to people with progressive
disorders, even when traditional therapy has ended.
+; So much to say
This all takes a lot of time and effort but, when you
cant do a lot for yourself, what you can do becomes
your only mission.
In sharing his experience of Motor Neurone Disease,
David Parker raises understanding of the positive things
that support people affected by a progressive disorder.
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 +
+8 Oats not so smpe
Assessment and management of dysphagia should be
a true test of person centred planning and reflective
practice, as decisions made have far reaching
consequences. Non-oral feeding has implications for
quality of life, sociability and self-esteem, not only for
the person concerned, but also impacting on carers
and family.
Lorraine Speirs tells us about Robert, who had
existing eating and drinking limitations due to cerebral
palsy exacerbated by a stroke at the age of 75. Three
years later, his PEG was removed and he could enjoy
his porridge again.
+ Socoogca perspectves on
nequaty seres ()
Dsabty and stgma: an unequa
e
...examples of good practice might include the
provision of accessible information for disabled clients,
parents and relevant others, and the involvement of
disabled people as advisors at all stages of policy
development and review within clinical practice.
The Disability Rights Commission campaign asks, is a
disabled person only half a person? Sarah Earle
explores how we can break down barriers and at the
same time play an important role in treatment and
rehabilitation.
lurther readng
Preschool language, brain injury, profound disability,
Down Syndrome, dysphonia.
Back cover
Ny Top Resources
Even close friends and family can find it hard to have
and develop conversations, so a book about your life
and important events, people and achievements can be
a starting point for conversations and sharing stories.
Tips for conversations from people with aphasia, for
people with aphasia.
SUMMER 2003
(publication date 26th May)
ISSN 1368-2105
Published by:
Avril Nicoll
33 Kinnear Square
Laurencekirk
AB30 1UL
Tel/fax 01561 377415
e-mail: avrilnicoll@speechmag.com
Design & Production:
Fiona Reid
Fiona Reid Design
Straitbraes Farm
St. Cyrus
Montrose
Website design and maintenance:
Nick Bowles
Webcraft UK Ltd
www.webcraft.co.uk
Printing:
Manor Creative
7 & 8, Edison Road
Eastbourne
East Sussex
BN23 6PT
Editor:
Avril Nicoll RegMRCSLT
Subscriptions and advertising:
Tel / fax 01561 377415
Avril Nicoll 2003
Contents of Speech & Language
Therapy in Practice reflect the views
of the individual authors and not
necessarily the views of the publisher.
Publication of advertisements is not
an endorsement of the advertiser
or product or service offered.
Any contributions may also appear
on the magazines internet site.
Cover picture by Paul Reid, posed by
model. See p.24
IN FUTURE ISSUES
DYSPHAGIA AUTISM STAMMERING INTENSIVE INTERACTION
SOCIOLOGY SURE START RESEARCH APHASIA
CONTENTS SUMMER 2003
www.speechmag.com
How l put users n the drvng seat
How many people can you fit in a Mini? A
mind-numbing nineteen! Of course, laden with
so many individuals, driving is virtually
impossible. And the same is true of
organisations with many stakeholders, unless it
is absolutely clear who is in charge of driving.
(Cecilia Yardley)
Speech and language therapists have a lot in
common with driving instructors but do we
fully understand what it means to put our
users in the driving seat? Ann Auchterlonie,
Carole Higginbottom and Cecilia Yardley
suggest why we should accelerate the process.
( OVER STORY
news
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003
Speech and language therapy is one service
targeted in the governments plans for
schools to provide a full range of community
services by 2006.
At least one school in every local education
authority in England is being funded to
provide childcare, health and social care,
lifelong learning opportunities, family
learning, parenting support, study sup-
port, sports and arts and information and
communication technology access.
Funding will be targeted initially at the
most disadvantaged areas then rolled out.
The idea is to enable schools to focus on
their core role of raising standards for
pupils by supporting childrens learning
through encouraging onsite provision of
services like speech and language therapy
so children do not miss out on schooling to
travel to appointments.
www.teachernet.gov.uk/extendedschools
For the preschool stage, childrens centres
are planned for disadvantaged communities
in England, to include high quality childcare
and early education, parenting support,
employment advice and outreach to par-
ents, and child and family health services.
www.surestart.gov.uk/infoDocs/Childrens
Centre2.doc
The government believes new research
lends support to its policy of developing
integrated centres. A lead investigator for
the Effective Provision of Preschool
Education research said, This is the first
large scale longitudinal study in the UK to
provide detailed, hard evidence on the
effects of preschool education on childrens
social and intellectual development at the
start of school. It has revealed the way learn-
ing experiences at home combine with good
quality education to provide a boost to the
development of all children especially
those from disadvantaged backgrounds. The
study also explores the effective practices in
preschool settings which appear to make a
real difference to childrens development.
www.ioe.ac.uk/projects/eppe / www.basic-
skills-observatory.co.uk
A new collaborative website on the needs of children with
speech and language difficulties aims to provide a first stop
for information and support.
The website - which will be live from Monday 2nd June - is split
for parents and professionals but users are encouraged to view
the whole site. It includes details of organisations and profession-
als who can help, useful publications, frequently asked questions,
fact sheets, news and an interactive element. Developed by the
charities I CAN and Afasic with the professional body the Royal
College of Speech & Language Therapists, with finance provided
by BT and Lloyds TSB Foundation for England and Wales, the site
will be subject to ongoing evaluation and development.
Commenting on the development Gill Edelman, chief executive
at I CAN, said, Research shows awareness and understanding
of speech and language difficulties is low, and people find it
hard to access information. This site is a huge step forward in
providing parents and professionals with vital, quick and acces-
sible information.
www.talkingpoint.org.uk
In a separate move, the Afasic website has also had a revamp,
with more publications now available online. Afasic is the UK
charity representing children and young adults with speech,
language and communication impairments.
www.afasic.org.uk
Kids
charities
to merge
Two charities which
provide opportunities
for inclusion through
safe play facilities for
disabled children are
planning to merge.
It is expected that the
six adventure play-
grounds in London,
information service and
national training and
consultancy network
run by Kidsactive will be
integrated within KIDS
over the next few
months.
KIDS is a national charity
dedicated to helping
children with disabilities
and their families. It is a
leading supporter of
inclusions policies.
KIDS, tel. 020 7359 3635,
www.kids-online.org.uk
Autism guidelines
A national plan of expert recommendations for children with autism
aims to avoid the current postcode lottery for those affected.
Developed by a group of professionals, parents and voluntary sec-
tor representatives, the guidelines recommend that there should
be a positive response to parental concerns at all times and aware-
ness training for community based staff working with children. A
general developmental assessment should be the first stage of the
process. Where autism is suspected, children should receive a
multi-agency assessment, and a key worker should be appointed.
The guidelines also cover reporting procedures and the need to
have a Family Care Plan in place within six weeks of the end of the
multi-agency assessment. The report recommends that within the
next 18 months all local areas should establish a coordinating
group to review services and identify training needs. They should
also have a trained professional to advise on specific interventions
for autism spectrum disorder and a specially trained teacher with
resource backing who can be consulted in the setting up of indi-
vidual education plans.
The chair of the National Initiative for Autism: Screening and
Assessment core working group said, The report provides a tem-
plate for multi-agency teams so that families and professionals
know what is agreed as current (2002) best clinical practice irre-
spective of location across the UK. In welcoming the guidelines,
the National Autistic Society highlighted the focus on support for
the whole family, multi-agency working and planning and autism-
specific training.
Appendices include references for a variety of assessment tools,
reviews of current practice, therapies, intervention and literature,
proformas of timeframes, a management plan, and a cost table.
www.nas.org.uk/profess.niasa.html
Talking point
Community schools
Inclusion of children with Downs syndrome is being supported by
an education pack for mainstream schools.
The Downs Syndrome Association resource is designed to meet the
needs of teachers with little time or specialist knowledge and includes
information on communication and dealing with challenging behav-
iour. Chief executive Carol Boys said, Our feedback from education
staff and parents is that there is a desperate need for practical support
that can be provided free to all schools who need it. This takes the
pressure off the teaching professionals and also off the parents who
have had to become the experts themselves, not only researching and
advising on teaching methods but frequently having to pay for the
limited range of materials previously available.
The pack has been distributed to all Local Education Authorities and
is available to download free from the Downs Syndrome
Associations website.
www.downs-syndrome.org.uk
Downs syndrome
and inclusion
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SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003
news 8 comment
User-rendy
A few years ago my experience of part of the NHS made me so angry I joined a
consumer group, started a campaign and am now one of a group of lay people
and professionals working together to bring about improvements in services.
Whether the personal issue is war, global warming, school closures or dog
fouling, there comes a point when we get active, and speech and language
therapy is no exception. Val Levens (p.8) describes the phenomenon of people
who have had cause to complain to our service being the most giving and
energetic in sharing their ideas. This shouldnt really surprise us. We know
from our own experience that when we complain it isnt to get compensation
or even an apology, but to prevent the same thing happening to someone else.
The wish to make things better for other people is fairly universal, but people
vary in how strongly they feel and how skilled and able they are to do this.
David Parker (p.17) and Robert (Lorraine Speirs, p.18) wanted their experiences
to be published to inspire and encourage others. Sadly, neither is around to see
the final result, and I am grateful to their families who were keen for
publication to go ahead. On reading David Parkers article, Margaret White
(p.14) commented that she would feel honoured for her article to appear
alongside his - So many people saying the same thing. Why arent we listening?
Carole Higginbottom (p.26) finds it is easier to listen and adopt a more
holistic approach when operating outside the pressurised NHS system.
Working for the National Autistic Society she is encouraged to adapt to the
changing needs of her client group. Cecilia Yardley (p.27) reports on how
Speakability has changed its emphasis in recognition of the fact that speech
and language therapy is very important - but then the aphasic person has to
get on with the rest of their life. At Connect the focus is on empowering
people with aphasia; their users commitment to working together to help
others is evident on our back page.
At the start of my career I remember the urge to cure and care and,
although Ive learnt a lot, I have to confess it has never entirely gone away.
However, as Sarah Earle (p.21) points out, this attitude inadvertently
contributes to the process of disablement and we need to move further
towards a way of working that reflects the social model of disability. That
the profession is making progress is evident to me, almost issue to issue, and
Helen McFarlane (p.4) is well ahead with her work with adults with learning
disabilities. To her, user involvement is not a trendy term, but something
fundamental to getting a service right.
User involvement is also a process, not something that is achieved in one go
as Denise Ford (I CAN conference, p.12) has found. Initially parents were kept
at a safe distance, but now staff and parents attend study days together, to
everyones benefit. Ann Auchterlonie (p.25) believes that involving our
children and young people and their parents as active participants has an
impact long after therapy has ended.
Personal experience shows me how successful user involvement can be when
parties respect and strive to understand each other. So, how user-friendly are you?
...comment...
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End of life
A nurse with a long established interest in end of life deci-
sion making has set up a website to provide objective
information to health professionals and stimulate debate.
Ann Moran said, I have spoken to a range of groups
on this issue and the problem with the debate in the
UK is that it has become polarised. This proves very
unhelpful to health professionals trying to obtain a
clear understanding of the issues. Contents include
information on living wills, decisions to withdraw or
withhold life prolonging treatment and a survey
which will gather evidence reflecting the views and
experiences of a range of health professionals
involved in this area of care.
www.www.endoflifeissues.org
No time to lose
The National Service Framework for Long Term Conditions
must address the unique characteristics of motor neurone
disease if it is to provide any real benefit to people with
the condition, according to a leading charity.
The Motor Neurone Disease Association is highlight-
ing four critical areas for action under the banner No
Time to Lose: early diagnosis, coordinated specialist
services, access to specific clinical interventions and
support for informal carers. The chief executive of the
association sits on one of the working groups advising
the government on how the framework should be
constructed. It is due to be published in 2004 with a 10
year implementation period from 2005.
www.mndassociation.org
School website praised
A school for children with severe learning difficulties
and profound and multiple needs has had its website
shortlisted for an international web award.
Priorywoods School in Middlesborough has developed a
website which includes educational resource materials,
downloadable worksheets and a kids-only area. One
class has symbols and photographs of them acting out
their favourite story, the Three Bears, and there are
downloadable switch activated videos of popstars to
promote cause and effect.
The website is one of 12 shortlisted for the 2003 Cable
and Wireless Childnet Awards.
www.priorywoods.middlesborough.sch.uk
www.childnetawards.org
Count us in
An online conference centre is bringing together ser-
vice users, service providers and policy makers from
around the world to discuss mental health.
In July 2003 the Mental Health Foundation / Foundation
for People with Learning Disabilities conference Count
us in: the mental health needs of children with learning
disabilities will include themes of services, policies and
practices, and transition to adult services. Registration is
free at www.connects.org.uk/conferences and, in addi-
tion to papers, there is the opportunity to participate in
discussion.
See also www.mentalhealth.org.uk and
www.learningdisabilities.org.uk.
Correction
Please note the correct spelling of Bickiepegs, supplier
of the Doidy cups recommended in Rachel Howarths
top resources in the Spring 03 issue.
www.bickiepegs.co.uk
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 (
user nvovement
I have recently come back to my job. I work as a
speech and language therapist for people with
learning difficulties who live in South Glasgow.
For the past two years I was working for three
organisations in the voluntary sector:
Enable Glasgow branch,
Fair Deal For 1 in 100 and
The Advocacy Project.
My job was to start a user involvement project
called Planning Together. I worked with Laura
Alexander, a parent activist who is a campaigner
for change for people with learning difficulties and
their families.
The aim of the Planning Together project was to
put people with learning difficulties and their fam-
ilies at the heart of service planning for better lives
in the community. Services might include leisure,
education (such as colleges), health, respite/short
breaks and jobs/employment.
User involvement is not just the latest trend in ser-
vice provision but an essential part of getting any
service right for people.
In speech and language therapy, it has long been
good practice to involve the client in setting goals
and agreeing a contract of care. Our own profes-
sional standards (Communicating Quality 2) state
that
A client centred approach must be adopted,
respecting the individuals needs and opinions
and promoting his/her active participation in any
intervention and the decision-making processes
associated with it. (RCSLT, 1996).
Furthermore,
the active role of carers is seen as essential, with
therapists supporting their involvement.
However, a significant amount of speech and lan-
guage therapy is delivered via staff training.The
challenge for speech and language therapy, then,
with the policies of same as you in Scotland and
valuing people in England and Wales is to
involve people with a learning difficulty at all levels
in our service. It is no longer acceptable to involve
people only in our more traditional approaches of
offering episodes of therapy activity.
In Glasgow we have developed a service process which
shows who we provide a direct speech and language
therapy service to and who receives a service via staff
training.
you want to make your wrtten communcaton more
accessbe
move away rom tradtona communcaton
group therapy
broaden your understandng o workng
n the communty
Read ths
The heart of
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DYSPHONlA
Rubin, J.S., Benjamin, E., Prior, A., Lavy, J. & Ratcliffe, P. (2002) The
prevalence of Helicobacter pylori infection in benign laryngeal
disorders. J Voice 16 (1) 87-91.
Helicobacter pylori (HP) is an accepted cause of chronic active gastritis and
has a major causative role in peptic ulcers. It is a gastric carcinogen. Its role
in nonulcer dyspepsia (NUD) is less clear, yet 50% of patients with NUD are
infected with HP, and some recent literature demonstrates long-term
improvement of symptoms following eradication. HP has been investigated
in several other organ systems, but has not been investigated to any major
degree in laryngeal disorders, a region that could be directly exposed to the
bacterium from pharyngolaryngeal reflux. This study represents one arm of
a larger study designed to investigate such a relationship. Of 101 patients
with nonmalignant voice disorders presenting to our voice clinics, 54.5%
tested positive for the H. pylori organism. Of the controls, 47.1% tested pos-
itive. When striated into age groups of < 45 years, 46-61 years, and > 62
years, and then age-matched with the controls, the likelihood of infection
with the H. pylori organism was greater in both the experimental middle
group, and in the middle group when combined with the elder group, than
in the matched controls, and this difference demonstrated a trend
approaching statistical significance. This finding is discussed in the light of
other studies on HP and on gastroesophageal reflex (GER).
PRESHOOl lANGUAGE
Tyler, A.A., Lewis, K.E., Haskill, A. & Tolbert, L.C.
(2002) Efficacy and cross-domain effects of a mor-
phosyntax and a phonology intervention. Lang
Speech Hear Serv Schools 33 (1) 52-66.
Purpose: The purpose of this study was threefold: (a) to
determine the efficacy of a morphosyntax and phonology
intervention against a no-treatment control group, (b) to
assess the effects of those interventions on the non-tar-
geted domain and (c) to evaluate sequence effects when
children receive both interventions. Method: Twenty
preschoolers with impairments in both morphosyntax and
phonology were assigned randomly to an intervention of
two 12-week blocks beginning with either a block of
phonology first (n = 10) or a block of morphosyntax first
(n = 10). Data were collected at pretreatment, after the
first intervention block, and post-treatment. For a control
group of 7 children, data were collected at the begin-
ning and end of a time period equivalent to one inter-
vention block. Changes in a finite morpheme composite
and target/generalization phoneme composite were
assessed. Results: In comparison to the control group
both interventions were effective at a statistically sig-
nificant level in facilitating improvement in the target
domain after 12 weeks. The morphosyntax intervention
led to cross-domain change in phonology that was sim-
ilar to that achieved by the phonology intervention. The
morphosyntax first sequence also led to slightly better
overall morphosyntactic performance. Clinical
Implications: Clinically, results suggest targeting mor-
phosyntax first, followed by phonology, if using a block
intervention sequence for children with concomitant
morphosyntactic and phonological impairments.
PROlOUND DlSABlllTY
Craig, A., Moses, P., Tran, Y., McIsaac, P. & Kirkup, L.
(2002) The effectiveness of a hands-free environmental
control system for the profoundly disabled. Arch
Phys Med Rehabil 83 (10) 1455-8.
The effectiveness of a hands-free environmental control
system (ECS) that allows profoundly disabled persons to
activate and control electric devices in their home by
using consciously controlled changes in their brain signals
was evaluated by means of a cohort study with field trial
testing of the ECS in participants homes. Ten profoundly
disabled persons (mean age, 42.9 y), all of whom had
very limited movement from the neck downward. Six
had spinal cord injury with lesions ranging from C2 to
C5-6. The other 4 had profound disability (1 each from
polio, spinal muscular atrophy, multiple sclerosis, cere-
bral palsy). The participants performed tasks on each of
3 test occasions. The tasks consisted of turning a televi-
sion on at the beginning of the trial, changing channels
(up, down), changing volume, and turning it off at the
conclusion of each trial. The time taken to select the
correct option and number of errors in selecting the cor-
rect option were measured. Measures were taken for
each trial, so that any improvement in switching could be
detected. All the participants were able to use the ECS
effectively to operate their television sets. Selecting a cor-
rect option took about 30 seconds (with most of this time
attributed to machine cycling time), with an error rate of
1.8 per 5 options selected. The time taken to operate the
ECS reduced slightly over the 3 trials and selection errors
reduced to less than one error per 5 options (<50%). The
results demonstrate that profoundly disabled persons are
able to use an ECS that uses changes in brain wave signals
with minimal training.
1. Improve the quality and specificity of information
2. Agree outcomes that will have long-term impact
3. Respond to a clients changing needs
4. Work out who all your users are, not just the end user
5. Collaborate - and be seen to collaborate
6. Connect with other service providers
7. Help users to inspire and motivate others
8. Use consumer group frameworks to assess your therapy provision
9. Involve users at a policy (not necessarily executive) level
10. Draw on user involvement initiatives beyond speech and language therapy
Practical points: putting users in the driving seat
l put users n the
drvng seat
Sooner or ater, most earner drvers
reach a pont where they are ready to
go o on ther own, an exharatng sghty
scary moment. vhen you thnk about t,
speech and anguage therapsts have a ot
n common wth drvng nstructors -
patence, good communcaton sks,
vson, knowng when to appy the brakes
- but do we uy understand what t
means to put our users n the drvng seat'
Here, three contrbutors who work or
consumer groups* suggest why we shoud
acceerate the process.
* ...as they uncton argey outsde o the heathcare system,
consumer groups are n a poston to see the bgger pcture and
to pck up on trends ong beore those workng nsde the system
can perceve them. Ths s argey a resut o consumer groups
eorts to construct a new knd o scence - one whch uses a
combnaton o observaton, anecdote, daogue, compants and
human nput as we as the avaabe scentc, socoogca and
psychoogca evdence - to reach ts concusons regardng
approprate care, and to denty probems and opportuntes
or change. (Thomas, P. (oo) The mdwe you have
caed knows you are watng... AlNS Journa +( (), p.)
Ann Auchterlonie is Director of
Afasic Scotland. She writes in a
personal capacity informed by
her experience with Afasic in
Scotland. The views stated here
are not necessarily those of
Afasic and do not reflect the UK
situation.
Please note that Afasic Scotland
has moved to:
Unit 1 Prospect III, Gemini Crescent,
Dundee Technology Park, Dundee DD2
1TY tel: 01382 561891 Fax: 01382
568391 email: afasicscot@aol.com
Carole E. Higginbottom was
until recently speech and
language therapy service
manager at The Robert Ogden
School in South Yorkshire. She is
now a freelance consultant,
currently working for Barnsley
Local Education Authority at a
strategic level supporting their
resource provision for children
with autism
(e-mail
carole.higginbottom@btopenworld.com).
Cecilia Yardley is Director of
Services with Speakability,
www.speakability.org.uk.
you want
to ocus on soutons not
probems
cents to take more
responsbty
your mpact to contnue
when therapy stops
Read ths
cover story
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003 (
go unfilled? Have you considered what the impact of a six month break
in therapy is for a child? Parents regularly ask who is responsible for the
provision of speech and language therapy because they want to find
out who is responsible for not filling the posts and sustaining the service
identified as critical to meeting their childs special educational needs
and, sometimes, they do not get straight answers. The authority is
responsible for provision but the filling of the post is the responsibility
of the health trust and, while the letters and telephone calls are
exchanged, childrens needs go unmet.
Occasionally, the issues are of effective provision at a local level - the qual-
ity of the individual service provided or the management of staff working
in relatively isolated situations, or in schools. Resolving the problemcan be
difficult when raising it may be seen as a criticism of other managers,
where inter-professional relationships are not good, or alternative sources
of supply are simply not available.
The local authority is currently a user with the responsibilities of a
provider without the powers. So, in the interests of accountability and
services for children in need, should I put the local authority in the
driving seat and clarify both responsibility and accountability? And
would that be enough?
What about parents as co-drivers? In Scotland, parents have statutory
responsibilities in the interests of the child, for their education, health,
development and welfare and to act as the childs legal representative;
and the right to take action to secure appropriate services for them.
They are users.
Afasic actively promotes partnership between parents and profes-
sionals, parents and local authorities and parents and health services.
But is partnership enough?
At present parents value speech and language therapy but have little
understanding of what it entails and who is responsible for providing it.
Their ability to act in their childs interests is restricted. Increased partic-
ipation by parents in the planning and monitoring of service provision
is an essential first step. A parallel step is to involve parents in the ongo-
ing work with their child, helping them understand the nature of their
childs difficulty, what support they can give and how the therapy pro-
vided can impact on their childs learning. The Individual Education Plan
can provide a framework for this where the therapist and the teacher
are working collaboratively and involving the parent, and the proposed
Co-ordinated Support Plan will make it essential (note 1).
If it is the parents duty to act in the interests of their childs health,
development and welfare, how can they fulfil that duty if they are not
in a driving seat?
Right to participation
And what about children and young people themselves - are they just
passengers? Since the UN Convention on the Rights of the Child spelt
out childrens right to participation - and not to be passive recipients of
services provided for them, good or bad - recognition of the importance
of involving children when decisions are made about them has been
gradually developing.
Children of sufficient understanding have the right to consent to, or
refuse, medical examination or treatment. Their rights to be involved in
decisions about their education or their personal life are now enshrined
in legislation and embodied in many national policy documents.
SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2003
cover story
fasic promotes the interests of
children and young people with
speech and language impair-
ments, works for their inclusion in
society and supports their parents and car-
ers. A common question parents ask us is, Where can I get private
speech and language therapy? It usually follows a complaint that their
child isnt getting enough speech and language therapy, or that their
speech and language therapist has gone off on maternity leave and
hasnt been replaced or, occasionally, that they have no choice in the
therapist provided. Like Oliver Twist, parents want more - usually more
of a good thing. More therapists, more therapy, more one-to-one
therapy, more therapists in secondary schools (are there ANY?) They
also want better. Better understanding of speech and language impair-
ments by GPs and in schools, better evidence of teachers, therapists and
educational psychologists working together, better information about
the nature of their childs difficulty and what the implications are,
better information on the level of service their child is going to receive
and what the intervention is aiming to achieve, and better service
provision.
Parents want more of what they see as a good thing. But, before we
decide to change drivers, we need to consider how that would make a
good thing better. We also need to establish just whos driving the bus
anyway.
Much of Afasics work is done on behalf of children and young people
for whom speech and language impairments have significant implica-
tions for their learning and potential educational achievement. In
Scotland, many children have these needs recognised in a Record of
Needs, opened by the Education Authority to support the planning of
appropriate educational provision (note 1). In these cases, the local
authority is responsible for the provision of speech and language
therapy and funding is provided to enable the authority to secure
therapy services. The authority can choose to buy these services from
their local health trust, or a different one, to buy them from a private
provider or to employ therapists. In practice, local authorities enter into
contracts with their local heath trusts - with varying degrees of success,
if we measure the outcomes against standards such as:
Child-centred provision of services
Collaborative working practice between therapists and teachers
Collaborative training of teachers and therapists
Improved understanding of specific language impairment in schools
Effective service provision
Accountability to parents, children and young people.
Not long ago, a major debate centred round the The Case of the
Disappearing millions, announced by a Government Minister in
Scotland as additional funding for speech and language therapy in
schools. The unhypothecated funds were allocated to local authorities
across Scotland with little impact on services. And, while central gov-
ernment and local authorities passed responsibility to the other and
avoided direct accountability, raised expectations were dashed and chil-
drens needs went unmet. Meanwhile, the allocation of health service
resources to the provision of speech and language therapy for children
whose needs are not recorded went unexamined and the level of
resources actually allocated to speech and language therapy for chil-
dren in school remains difficult to establish across Scotland.
A different problem arises on a regular basis and is a common cause
for complaint: maternity leave. Have you noticed how many speech and
language therapists are female? Have you calculated how many have
maternity leave? Have you noticed how many maternity leave vacancies
A
A aboard!
lrom her poston at the whee o Aasc Scotand,
Ann Auchterone takes a persona vew o some o
the obstaces we need to negotate to brng parents
and young peope wth speech and anguage
mparments on board our bus.