Spinal News Ciara's Story - p6
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Autumn 2008
Spinal News
Ireland’s National Spinal Injuries Magazine
Ciara’s Story
p6
Assistive Technology p12 The Eagle has landed p26 ‘Rose of OT’ p15
FRANK WARD & CO.
Solicitors
We are happy to be endorsed by Spinal Injuries Ireland.
Established now for over 25 years we have acted for many people with Spinal Injuries
and have great experience in all areas of litigation. We have pursued cases in foreign
courts and have been involved in landmark decisions.
We are honoured to act on behalf of the organisation’s members.
Frank Ward B.C.L Liam Guidera B.C.L.,F.C.I.Arb
_____________
Gerry McKinney B.C.L.,Dip Eur.Law
Colm Hickey B.B.L.S., Dip.Prop.Tax
Evelyn Savage BA., Dip.Emp.Law
Brid O’Dwyer B.C.L., LL.M
Grainne Whelan LL.B.
Accounts & Administration Legal Executives
Tom Cooney F.C.C.A. Patrick Ward B.A., LL.M.
Caitriona Tiernan Vincent Costello B.Corp.Law, LL.M.
Lorraine Rooney B.A.
Veronica Walsh B.Corp.Law, LL.B.
Neil Kidd B.A.
Jonathan Groome B.A.
Roisin Magee B.A. (Mod) P.g. Dip.Law
Equity House, Upper Ormond Quay, Dublin 7
Tel: 873 2499 Fax: 873 3484
E-mail: legal@frankward.com
www.frankward.com
2
Editorial Contents
I
would like to start by congratulating
the National Rehabilitation Hospital
on recently securing accreditation
4 SII News
in Rehabilitation by CARF in the 4 Services Provided by SII
following programmes: Inpatient
Rehabilitation Programmes CIIRP-
5 Vocational Programme
Hospital (Adults) and In-patient 20 Driving from your Wheelchair
Rehabilitation Programmes CIIRP- 22 Kick Start Programme
Hospital (Children and Adolescents).
For those not familiar, CARF is a 26 Fundraising
private, not-for-profit organisation 28 Replacing your Wheelchair
that promotes quality in rehabilitation
services by establishing standards 30 Corresponsents
of quality for organisations to use as
guidelines in developing and offering
their programmes or services to
consumers.
6 My Story
From Spinal Injuries Ireland’s 6 Ciara’s Story by Fiona McGoran
perspective the CARF accreditation
process was a very useful exercise, as
it gave us the opportunity to develop
and clarify our role in the provision of 8 Book Review
services for patients and their families.
We also have reasons to celebrate 8 A Complete Plain-English Guide to
here in Spinal Injuries Ireland. Two of Living with SCI
our work colleagues recently received
the results of their exams. Joan Carthy . SCI and the Family
received her diploma in counselling . Wheeling and Dealing: Living with SCI
and Siobhan O’Driscoll received her
Masters in Rehabilitation Studies. The
staff here in Spinal Injuries Ireland
would also like to congratulate Aoife
Kelly, Occupational Therapist, who was
10 Disability News
recently crowned The Rose of Tralee 10 Workers already being hit by flagging
for 2008. economy
We were truly saddened to hear of the
sudden death of one of our members, . Voters angry over poll access shame
Joey Hogan. Joey actively took part . Carer discrimination ruling welcomed
in all our venture activities and only
recently was brave enough to try scuba
diving. He will be sadly missed by all
his friends in Spinal Injuries Ireland and
the National Rehabilitation Hospital.
14 NRH News
14 3 Years CARF accreditation
Colm Whooley . Farewell to Frances
. NRH ‘Rose of OT’ - Aoife Kelly
The News Crew recently crowned Rose of Tralee
Production: Christine Bradshaw
Editorial:
Noelle Daly
Colm Whooley
16 Technology
Copy: Robert Kenny 16 The Appliance of Science
Advertising: Philip Quinlan
Patrons: Diane and Chris de Burgh 17 “How I Do It” by Marty Coyne
The views expressed in “Spinal News”
are not necessarily those of Spinal Injuries
Ireland. 20 Travel
Contact Details:
Spinal Injuries Ireland, NRH,
18 Portimao, Portugal
Rochestown Avenue, Dun Laoghaire, 19 Fawnmore Apts., Kinsale, Co. Cork
Co. Dublin. . Blagdon Farm, Devon, England
Tel: 01 2355317
Email: info@spinalinjuries.ie 22 Rights of disabled travelling by air
Website: www.spinalinjuries.ie
3
SII services provided for
patients and their family
Drop In Resource Centre Advocacy Officer Spinal Injury Ireland’s Website
Situated in the grounds of the National The role of the Advocacy Officer is to www.spinalinjuries.ie is updated regularly
Rehabilitation Hospital, Spinal Injuries provide support and information to people to complement the magazine and is a very
Ireland’s Drop in Resource Centre and with a spinal cord injury and their families useful source of information.
Support Office is open from 9.00am to when they return home. Spinal Injuries
5.00pm five days a week. Patients and their Ireland’s outreach team endeavours to follow Information Leaflets Available
family can call in to discuss their concerns up with patients approximately five weeks
with a member of the support team. Evening after discharge from the NRH. Family Support Retraining
appointments are by request. Carmel will help link people into existing Back to Work Personal Assistants
services in the community and will deal Buying a Car Social Welfare
with other issues such as personal, education Medical Items Payments
and employment opportunities, transport,
Housing Grants Legal Advice
personal assistants and entitlements.
If you feel Carmel can be of assistance Useful Addresses Venture Sports
please contact her at: Education
carmel@spinalinjuries.ie
Family Regional Support Groups
Visit to Mater Hospital
Our Advocacy Officer visits the Mater To support families in the community a
Hospital on request to meet with family number of family networks have been set
Joan Carthy, Support Co-ordinator members should they wish to talk to up in some health board regions.
someone from SII. Family Information
Family Counselling Service packs are also made available to the Most people felt that they just needed
families. someone to talk to and in many cases
Spinal cord injury is recognised
would like to be there for new patients
internationally as one of the most
devastating and debilitating injuries a person Venture/Social Programme and new families so that they can pass on
can sustain. To address this Spinal Injuries The SII venture and social activities their knowledge and support.
Ireland has contracted a qualified counsellor programme include sports such as kayaking,
who has a background in Spinal Injury scuba diving, fishing and self defence but Upcoming Meetings:-
Nursing. For details contact: Spinal Injuries also includes trips on the Luas, shopping The Workhouse, Carrickmacross,
Ireland support office at 01 2355317. trips and trips to the cinema and sporting Co Monaghan.
venues. All equipment is supplied and
Vocational Programme appropriate staff are also available. Tuesday, November 18th
The Vocational Programme is a case 7 pm - 9 pm
managed service specifically designed to Handbook
address the vocational and educational needs Spinal Injuries
of persons with Spinal Cord Injury. The Ireland is delighted
programme will support clients in reviewing to have completed
their vocational and educational needs with their handbook
the aim of facilitating a return to work, designed to assist
education or voluntary work. all those living
Siobhan O’Driscoll is SII’s representative with a spinal cord
on the vocational team. This team will injury to deal with TLC Centre, Santry, Co. Dublin
in turn liaise with a wider network of the new realities
vocational and other services in the client’s they are faced with. Tuesday, ovember 25th
local community. The handbook is available free of charge 7 pm - 9 pm
to members of SII. (post & packaging
€7.50 if you would like it posted to you.)
Alternatively, call to the SII office for a
copy of the handbook
Quarterly Magazine, ‘Spinal
News’
‘Spinal News’ is a quarterly magazine
Contact Carmel on 01 2355317
produced in house by Spinal Injuries Ireland.
for more information on upcoming
You can download the latest issue of the
network meetings.
magazine as a pdf file from our website.
Carmel Cunniffe, Advocacy Officer
4
We need to recruit
Spinal Injuries Ireland
correspondents
Contact Details
What is a Correspondent?
A Correspondent is someone who will send You can write to us free of charge at:
us little snippets of local disability news Spinal Injuries Ireland,
about people, places and events in their National Rehabilitation Hospital,
neighbourhood. Would you like to try it or Rochestown Avenue,
know someone who would? FREEPOST
Dun Laoghaire,
We need to build up a good strong team of Write to: Co. Dublin.
Correspondents, so if you are interested, ‘Spinal News’,
please ring or drop us a line or send an Spinal Injuries Ireland, NRH, Rochestown Phone: (01) 2355317
e-mail to the address below. If you want to Avenue, Freepost, email: info@spinalinjuries.ie
suggest someone who you think might be Dun Laoghaire, Co. Dublin. Website: www.spinalinjuries.ie
interested or who might like to be asked, Tel: 01 2355317
please do, and we’ll do the asking. Email: info@spinalinjuries.ie
Vocational Programme Kick Start
Programme
Siobhan O’Driscoll who has previously
worked on Spinal Injuries Outreach
program is now working solely on the
development of the Vocational and Kick
Start programmes.
The idea of the Kick Start activity
course is to tap into the proven benefits
of venture activities as a way to
encourage and motivate individuals who
have sustained a spinal cord injury.
The ultimate goal of the programme is
to target individuals with a spinal cord
injury who are at home and not taking
part in either employment, re-training or
local community activities.
It would be hoped to identify some
potential clients for this course through
he Vocational Programme is a the new Vocational Rehabilitation
T
Who is eligible?
case managed service specifically Any person can be referred to the Program in the NRH.
designed to address the vocational Vocational Programme through the This is not about turning people
and educational needs of persons with rehabilitation team if they:- into adventurers but rather to use it as
Spinal Cord Injury. a catalyst to motivate and encourage
have sustained a spinal cord injury
For the duration of the project on-going people to look beyond their present
are a current patient of the NRH
support will be provided by the Medical personal expectations. (See page 22).
are aged between 16 and 65 years of age
Social Worker and Occupational Therapist have a wish to pursue vocational and/or
involved. These staff will also be the client’s For further details contact
educational options whether paid Siobhan on 01 2355317.
link between the Rehabilitation and the employment, supported or sheltered,
Vocational teams.
voluntary work, third level education or
Where appropriate a workplace
educational activities which may enhance
assessment will be undertaken by the
vocational options
Vocational Occupational Therapist. Issues
such as accessibility and equipment can be
addressed and recommendations made. Vocational Rehabilitation Team?
If clients are referred to a training centre The Vocational Team includes the client,
a member of the Vocational Rehabilitation representatives from the HSE and FÁS
Team can accompany them and assist in as well as the Medical Social Worker and
promoting links at a local level. A client Vocational Occupational Therapist from the
can be referred to the Vocational Planning National Rehabilitation Hospital and Spinal
and Exploration Module at the Hospital’s Injuries Ireland outreach staff.
Rehabilitative Training Unit to learn skills in
searching and applying for appropriate types For further details contact Siobhan on
of work. 01 2355317. Siobhan O’Driscoll
5
My Story
Ciara’s Story By Fiona McGoran
When you go out into the real world,
“ reality hits you hard
”
Ciara and Philip pictured with their two children Abbie and Ryan
W
hen Ciara Baker fell down a lift it was dark and I didn’t realise that I was time of the accident, after a few hours the
shaft at the age of 15, the brave stepping back into a lift shaft. After I landed, pain began to set in. I was brought to theatre
young school girl did not let I realised that I couldn’t feel my legs but I for an operation during which the doctors
her accident stand in the way of regaining just thought they were broken. My friends inserted steel rods in my back. I was on a
control of her life. During the 18 months managed to pull me out and carry me to a lot of morphine and I remember feeling
that she spent in the National Rehabilitation nearby bench. We were all petrified of the the injections in my legs. I caught a bad
Hospital in Dun Laoighre, Ciara studied for trouble we were going to get into with our infection a few days later and from then on
her Intermediate Certificate and passed with parents, so my friends phoned an ambulance I could feel nothing. I think the permanent
flying colours. and as soon as it arrived my friends ran damage was a result of both the fall and the
The accident took place on a night out home.” subsequent infection. The doctors told me
with friends during the summer holidays. Ciara had a curfew which she always that being pulled from the lift shaft by my
“I had just finished second year in school abided by so her parents were frantic with friends would not have caused any further
and had told my parents that I was going worry when she failed to return home on complications to my injury.”
to a community disco with some friends. time. There was no phone in her house so Ciara remained in The Mater Hospital
We sneaked into town instead and started a police man was sent around to the family for a week and was then transferred to
exploring an old derelict building. I stepped home to break the news to her parents that an intensive care unit at the National
back to hide from my friends so that I she had been taken to the Mater Hospital. Rehabilitation Hospital. After a few days she
could jump out and scare them. However, “While I had experienced no pain at the moved to a general ward, Our Lady’s Ward.
6
“I lay on the flat of my back for a few friends who were more than happy to give overwhelmed with the ease of access for
months and it was during this period me piggy back when necessary.” wheelchair users. They visited Disney Land
that I slowly began to realise that I was a According to Ciara, the teenage years where the new bride enjoyed heart racing
paraplegic. I was surrounded by people with were a very difficult time. “Like any fun on all of the rides. “Staff members were
similar and worse injuries so I was taking teenager, I wanted to look good but I was more than happy to help me on and off all
notice of what was happening around me. self conscious. I refused to wear skirts and of the rides. Everybody is catered for and it
Then the doctors confirmed my worst fears found it difficult getting around clothes was a hassle free experience.”
and the reality hit me. When I was allowed shops. Access is difficult now so you can As a newly married couple, Ciara and
home for weekends, I would just lie in only imagine what it was like in the mid Philip were keen to start a family. Ciara had
bed for days refusing to go outside. Some 1990s. Things were tough.” been informed at the Rehabilitation Hospital
weekends I wouldn’t even want to go home. When Ciara finished school her mother that she would experience no problems
When you’re in the Rehab everyone is in encouraged her to enrol in a secretarial conceiving and carrying a child to full term.
the same boat and there is a certain comfort course. “My parents, my little brother and However, like any woman eager to conceive,
that comes with that. When you go out into my friends were all instrumental in keeping she was anxious about what lay ahead.
the real world, reality hits you hard. It took my spirits up. They wouldn’t let me laze Fortunately, there were no complications and
me about three years before I could go out about and become self indulgent for one Ciara gave birth to her son, Ryan, in April
without caring that I was in a wheelchair.” second. So, I completed a course which 2005.
Ciara remained in the Rehabilitation also included work experience at Beaumont “Ryan arrived two weeks early and I had
Hospital from July 1992 to September 1993 Hospital. That was 12 years ago and I’m still a natural delivery. He is a wonderful little 3
during which she completed her third year working there as a secretary in the social year old boy and very well behaved.”
schooling and received her intermediate work department.” Two years later, Ciara fell pregnant again
certificate, a remarkable achievement. In 1998, Ciara was out with a group of and nine months later, on the morning of
“I went back to school in September friends and she met a young man called the 25th of February, she began to feel some
2004 and entered fifth year which was a Philip Baker. They dated for four years and painful contractions.
very daunting experience. I was paranoid then married in 2002. “We had our wedding “Philip had left the house to take Ryan to
about people taking about me and staring. at the registry office and then 45 people his crèche and then travel on to work. I rang
The school was very understanding and had joined us for a meal. A party followed in the him from our home in Balbriggan to tell
organised my classrooms so they were all on function room at the Great Southern Hotel at him to turn the car around and come straight
the same floor. However, there were some Dublin airport.” home. By the time he arrived back in the
rooms that were difficult to access, such as The happy couple jetted off to Florida house, I was well and truly in labour. It
the computer room. Thankfully, I had great on their honeymoon where Ciara was was too late to make a dash for the hospital
so Ryan sat in front of the TV downstairs
while I lay on our bed trying to keep calm.
Philip rang the paramedics and put them
on the loudspeaker so that he could follow
their instructions. Within a short while, he
delivered our daughter Abbie.”
Some 15 minutes after Abbie arrived into
the world, the ambulance arrived to whisk
Ciara and her baby off to hospital. Shortly
after they arrived, Ciara haemorrhaged and
was brought to theatre. Thankfully, she
recovered. However, the couple received
some shocking news later that day when
they were told that Abbie has Down’s
Syndrome.
“It’s been tough but our employer has
been really helpful. Philip also works for
Beaumont Hospital and they have switched
our hours around so I work two days a week
and Philip works three days a week. This
means that one of us is always at home with
Abbie. Ryan has also been great. He dotes
on his little sister and is very helpful.”
Ciara, Philip and Ryan managed to slip
away for a well earned break in early
September 2008. “My mum took care of
Abbie and we really enjoyed spending
some quality time with Ryan. It was a great
holiday and one that was really needed as I
returned to work from maternity leave the
Monday after I got home.”
According to Ciara, the one issue that
impacts wheelchair users in Ireland is
access. “Ireland is getting better but there
are numerous old buildings that are not
accessible for people in wheelchairs. We
need space to get around and access needs to
be focused on and improved.”
Ciara , Ryan and Abbie
7
Book Review
A Complete Plain-English Wheeling and Dealing: Spinal Cord Injury and the
Guide to Living with SCI Living with SCI Family
An invaluable resource for anyone Topics include: physical health, from “Spinal Cord Injury and the Family” is
touched by spinal cord injury-newly loss of function to problems like for individuals and their families who
injured patients, longtime survivors, pressure sores, and bladder control; must climb back from injury: for the
friends and loved ones, and medical the stages of psychological adjustment young quad couple, both quadriplegic,
professionals. A survivor’s perspective and rehabilitation; Everything from who wish to conceive and raise a
on the physical and emotional journey welfare services to embryonic stem child; for the paraplegic dad who
from the time of injury, through the cell research; dating, marriage, and wants to teach his daughter to drive;
entire recovery process, and on to parenting; friendship networks and for the couple wondering how they
living a full and happy life. But most social supports; concerns about can regain the sexual spark in their
importantly, she shows you that a transportation and accessibility; and relationship. The authors answer the
spinal cord injury is not a life-ending the economic consequences of spinal “what now?” questions from daily
event, but rather a new beginning. cord injury. routines to larger issues of SCI.
Available from: Available from: Available from:
Amazon.co.uk Amazon.co.uk Amazon.co.uk
Price: £16.15 Price: £22.75 Price: £10.95
Product Review
SWISS-TRAC
SWISS-TRAC is a small, efficient wheelchair power
unit, which can be quickly attached to/from the wheelchair. It
pulls the wheelchair user over “sticks and stones” or over curbs
without any problems. SWISS-TRAC can be driven not only
on pavements and in pedestrian areas, but also through fields,
meadows and woodlands. A day out at the zoo, a visit to a large
exhibition or a shopping centre suddenly becomes a pleasure.
Just clip on and drive! SWISS-TRAC is compact, robust and
easily handled.
Technical data
Distance of up to over 30 km on level surface
Velocity max. 6 km/h
Maintenance free batteries, 40 Ah/24 volt
Max. incline performance 20%
Max. load 130 Kg (Driver with wheelchair and luggage)
Weight of machine 65 kg
Supplier:
Ahead, Disability Equipment & Consultancy LLP
2 Tansy Close, Abbeymead, Gloucester, GL4 5WL
Tel & Fax: 01452 540 783
E-mail: Ahead.AL@googlemail.com
8
ReWalk
only minimal additional mobility assistance – to-sit, climb stairs, ascending/descend-
saving tens of thousands of dollars yearly. ing slopes, driving
By replacing or supplementing expensive • Training replacing other training
mechanized gait trainers, for example, equipment at home and at rebabilita-
ReWalk allows institutions to redirect tion center
significant budget resources for other
therapeutic activities. Prerequisites:
• Ability to use hand and shoulders
Functionality: (walking with crutches)
• All day usage • Healthy cardiovascular system and
• Mobility – walking, sit-to-stand, stand- bone density
R
eWalk is a wearable, motorized quasi
robotic suit. Partially concealable
under clothing, ReWalk provides
user-initiated mobility – leveraging advanced
motion sensors, sophisticated robotic control
algorithms, on-board computers, real-
time software, actuation motors, tailored
rechargeable batteries and composite
materials.
ReWalk works with users – not just for
them. Users walk with the assistance of
crutches, controlling suit movement through
subtle changes in center of gravity and upper-
body movements. In addition to simplifying
suit control, this user participation in mobility
brings tangible health and emotional benefits.
ReWalk is not just a vertical wheelchair –
ReWalk restores the element of control over
mobility so lacking for wheelchair users.
As any sedentary wheelchair user can
attest, life in a wheelchair carries a hefty
healthcare price tag. Serious problems
with the urinary, respiratory, cardiovascular
and digestive systems are common, as well
as osteoporosis, pressure sores and other
afflictions.
By maintaining users upright on a daily
basis, and exercising even paralysed limbs in
the course of movement, ReWalk alleviates
many of the health-related problems
associated with long-term wheelchair use. In
addition to relieving suffering, this has a real
impact on healthcare costs – cutting yearly
expenses almost in half, and enabling both
insurers and individuals to redirect funds to
other avenues.
Adoption of ReWalk by wheelchair users
results in significant cost saving at both
institutions and private homes. ReWalk
makes standing devices, stair lifts, bed lifts,
and other mobility assistance apparatus
redundant. Similarly, ReWalk users don’t
require expensive powered wheelchair – or
the oversize vehicles and devices required
to handle them. With ReWalk, users require
9
Disability News
Workers with disabilities already being hit by
flagging economy
I
ncentive schemes encouraging The Supported Employment “Take someone earning minimum
businesses to hire more workers with Programme is an initiative to assist wage. When they go onto Back to Work
disabilities must be improved in the jobseekers with a disability to find Allowance as part of the Wage Subsidy
face of Ireland’s economic slowdown, the employment in the open labour market. scheme, their benefit will be reduced over
Government has been warned. It provides a jobs-coach to assist with the three years. Even after year one, they
As the Department of Enterprise, integration process and meet the labour will be financially worse off. After year
Trade and Employment concludes a requirements of employers. three when benefits are withdrawn, they
major review of the FAS managed Wage Greg Barry, Chairperson of the Irish are just on a minimum wage payment,”
Subsidy Scheme and the Supported Association of Supported Employment, said Mr. Barry.
Employment Scheme, concern was was part of a working group that met A spokesperson for the Department
expressed that workers with disabilities outgoing Minister Micheal Martin as part of Enterprise, Trade and Employment,
could be hit hard amid the threat of a of the review process. said the review findings will soon be
devastating international recession. Said Mr. Barry: “We advised published. “The Wage Subsidy Scheme,
“The economic downturn has already the Minister that both schemes are which commenced in September 2005, is
created an incredibly competitive very useful, and some tweaking and being reviewed as it approaches the end
jobs market,” said Sheila Comiskey, improvement will see a big take-up of of the initial pilot phase of the operation
Coordinator with Jobmatters supported people availing of them.” of the scheme,” said the spokesperson.
employment. Mr. Barry is hopeful that expectations “It is also considered timely to examine
“The Wage Subsidy Scheme can on employees to work 18 hours a the effectiveness of the FAS Supported
be difficult to avail of because of the week under the Supported Employment Employment Programme in the context of
qualifying criteria. So we want to make Programme will be reduced to eight the current operational standards.
it more user-friendly and more-client hours. “There is a gap between people “It is hoped that these reviews will
friendly, particularly in this time of who can avail of the scheme and work 18 significantly inform beneficial change in
economic troubles.” hours per week, and those who can’t. For the interest of higher employment levels
The Wage Subsidy Scheme provides those who can’t, there is nowhere to go.” of people with disabilities in the future.
financial incentives to employers, outside He also believes that the Wage Subsidy Copies of these reviews will be made
the public sector, to employ disabled Scheme would prove popular if there available to relevant interest groups in
people who work more than 20 hours per was a greater financial incentive for due course,” she added.
week. employees.
Voters angry over poll access shame European
research
V
oters with disabilities made a Other wheelchair users, including a
number of complaints about lack man in Co Wicklow, told RTE’s Liveline
agendas
of access to polling centres during
the referendum on the Lisbon Treaty.
radio programme he had not been able to
enter the polling station but that a Garda
Around 30 wheelchair users had to be had assisted him and taken his completed
T
taken to a specially designated polling ballot paper inside the station. here has recently been a launch
station several hours after being turned Spinal Injuries Ireland suggest that of a new consultation survey with
away from the polling station near their members contact their county council disabled people’s organisations in
Cheshire Ireland accommodation facility about having their local polling station European Countries.
at Knox Hall in Monkstown in Co. made wheelchair accessible. ‘European Research Agendas for
Dublin because its existing wheelchair Disability Equality’ (EuRADE) is a
ramp had been taken away. research project funded by the EU
There were similar problems with Framework 7 ‘Science in Society’
wheelchair access to polling stations programme and is a collaboration
in other parts of the country, which between the European Disability
prompted People with Disabilities in Forum (EDF), the University of Leeds
Ireland (PwDI) to call for the problem to (UK) and the University of Maastricht
be solved before next year’s European (Netherlands). The purpose of the
elections. project is to build the capacity of
Fine Gael Councillor Mary Mitchell European disabled people’s organisations
O’Connor said it was disgraceful that to participate in future research projects.
the Cheshire Home residents had almost It also encourages disabled people’s
missed out on their democratic right to organisations to play a part in shaping
vote. PwDI said it was not acceptable the European research agenda.
that people with disabilities would have Print version available from: http://
to wait until 2015 before public buildings www.leeds.ac.uk/disability-studies/
were required to have wheelchair access. projects/eurade/EuRADE%20-%20
ENprint.pdf.
10Carer discrimination ruling welcomed
A
n Irish organisation campaigning staying in a job or returning to work.
for rights for the disabled has “I have seen people in Ireland who
welcomed a European Court of would wish to job-share or work reduced
Justice ruling in favour of a woman who hours because they have to care for a
claims she had to resign from her job disabled child and employers would not
because she has a disabled son. accommodate them so they have had to
Inclusion Ireland welcomed the give up work completely.”
landmark judgment made in Luxembourg Ms Coleman was working for law
recently in favour of Englishwoman firm Attridge Law when she gave birth
Sharon Coleman, who said she suffered to a disabled son in 2002. As primary
“discrimination by association”, carer, she wanted flexible working
breaching EU rules. arrangements, but accepted voluntary
The court declared that an EU directive redundancy in March 2005 and began
banning employment discrimination on a claim for constructive dismissal five
grounds of disability is not limited to months later.
disabled people themselves, but covers The judges said the EU directive
their carers as well. was designed to combat all forms of
Ms. Coleman took legal action after discrimination and applied not to a
claiming she was forced to leave her job particular category of person but “to
because she was not allowed as much nature of the discrimination”. “Where
flexibility in her work as parents of other an employer treats an employee who
children were. is not himself disabled less favourably
Deirdre Carroll, chief executive than another employee in a comparable
officer of Inclusion Ireland, said she has situation, and it is established that
encountered people in similar positions to the less favourable treatment of that
Ms. Coleman in Ireland and yesterday’s employee is based on the disability of this
judgment was good news for such child… such treatment is contrary to the
individuals. “We have research which prohibition of direct discrimination,” the
shows women who have children with European Court of Justice said.
severe disabilities are disadvantaged in
European law will need ‘substantial changes’
C
ampaigners have criticised harassment and victimisation.
proposed new European anti- European Disability Forum president
discrimination laws that they say Yannis Vardakastanis welcomed the
are “unclear” and miss out areas of vital “wide scope” of the proposal.
importance to disabled people. But he said the draft directive was
The draft directive from the European “unclear, too short and introduces
Commission (EC) would provide significant restrictions of the right to
protection from discrimination on equality for disabled people in several
the grounds of disability, age, sexual areas, such as education and insurance”.
orientation, religion and belief in areas He said it would create “legal
outside the workplace, which is already uncertainties” and “room for
protected under EU law. interpretation”, while some provisions
It would offer protection in social would contravene the UN Convention on
security, healthcare, education, and the Rights of Persons with Disabilities.
goods and services that are commercially And he criticised the lack of specific
available to the public, including housing provisions in areas such as access to
The EC’s commissioner for information, transport and accessible
employment, social affairs and equal election procedures, as well as the lack of
opportunities, Vladimir Spidia, said: “The a “meaningful consultation”.
right to equal treatment is fundamental, Mr. Vardakastanis said the draft
but millions of people in the European directive would need “substantial
Union continue to face discrimination in changes” if it was to protect disabled
their everyday lives. Europeans from discrimination.
“At present, there is an inequality in The new proposal came as an EU
community legislation itself because survey revealed that 45 per cent of
people are protected from discrimination Europeans believe that disability
outside the workplace only on grounds of discrimination is widespread, although
gender and race or ethnic origin.” more than two-thirds believe it is less
The new directive will outlaw direct widespread than five years ago.
and indirect discrimination, as will as
11FIRST EVER ASSISTIVE TECHNOLOGY LIBRARY
Ireland’s 20,000 users to
benefit from loan library
I
reland’s first every Electronic
Assistive Technology (EAT) web
based library bank www.try-it.ie,
was launched in Dublin on Thursday,
15 May 2008 by a partnership of
organisations who work with people with
disabilities. Assistive technology enables
people with disabilities to have greater
control over their lives. There are major
deficiencies in access, assessment and
provision of assistive technology and this
initiative allows centralised access to
people with disabilities and their carers to
the greatest array of EAT available.
The partnership comprising the
National Rehabilitation Hospital (NRH),
Enable Ireland’s National Assistive
Technology Training Service, the Back row Karl O’Keeffe (EI) SL, Rebecca Beck, (Project Manager NRH), Brian Miller (HSE)
Front row Tracy Hutchin (IMNDA), Glenna Gallagher (Locum Project Manager), Nuala Tierney (Retired OT
NCBI, the Assistive Communications Manager NRH) Síobhan Long (EI) Paula Bradley (Project Lead NRH)
Technology Officers Network (ACTON)
and the Irish Motor Neurone Disease
AT user, Michael Gogarty, who is that there is an overwhelming need for
Association (IMNDA), who together
visually impaired, knows better than a service like try-it.ie. Professionals
represent in excess of 20,000 service
most the impact that the right AT can who work with people with disabilities
users, has been awarded funding by
have. ‘‘I was born with a progressive throughout Ireland will be able to
POBAL (Enhancing Disability Services
condition when there was no such thing borrow and trial new EAT devices,
Programme) to establish and run the
as AT. I now use among other devices receive feedback from other users and
web-based library of electronic assistive
magnification software and closed circuit AT assessors leading them to make
technology (EAT) and to provide a forum
televisions which enable me to lead informed decisions about what best suits
for education, training and networking in
an independent life along with other their particular circumstances prior to
this area. The launch was been arranged
techniques and adaptions I have learned.’’ making significant financial or time
in conjunction with the Communication
Henry Murdoch, said, “I’m delighted to commitments. They will also be able to
Matters Roadshow who will hold a range
launch try-it.ie, Ireland’s first centralised avail of assessments by potentially more
of workshops in Croke Park on the day.
Electronic Assistive Technology library. informed and highly trained professionals
Research shows that 75% of assistive
I’m particularly pleased at a consortium as a result of the education, training and
technology is abandoned due to the
approach, which recognises the need support dimension.
lack of training and the website aims
for organisations representing diverse “This is the first time that these five
to address this issue by working with
and disparate sectors of the disability organisations have come together and I
training providers, carers and users
community, to work in a cohesive and believe that our diversity of background,
alike to, not only provide access to AT,
integrated manner to optimise the service knowledge and users promises to enhance
but access to education, training and
received by their clients. EAT is a an exciting collaboration where the
networking to maximise the benefits
rapidly developing area and holds huge needs of a wide variety of individuals
of AT to users. As the website goes
for empowering, providing independence, with disabilities are recognized and
live members will be able to borrow
and increasing quality of life for people addressed.”
electronic aids, to allow themselves
with disabilities.” This website is modelled mainly on a
and their users assess and try out a
Glenna Gallagher, representing the successful library operated by Assistive
range of assistive technology before
consortium said, “Research carried out Technology Partners (Denver Colorado).
recommending purchase.
amongst users, carers and trainers shows
On www.try-it.ie the equipment
available for loan includes:
Communication Aids, e.g. voice
amplification systems, speech
enhancers, and text-to-speech devices.
Computer Access, e.g. alternative mice,
keyboards, voice activation software,
etc.
Leisure e.g. art/music/photography
Memory Aids, e.g. task prompters,
visual assistants, voice cues.
Switches, e.g. tactile pads, grip
switches, joy sticks, etc.
Visual impairment, e.g. magnifiers,
CCTV systems, screen readers, Braille-
Glenna Gallagher and Michael Gogarty to-speech devices, etc.
12Eflow Toll Plaza - Exempt Wheelchair user
Vehicles for Disabled Drivers banned from airline
because she is disabled
A
wheelchair-user has been banned from using
an airline because she is disabled.
Kim Swift, 50, was left stunned when
Monarch Airlines told her she was not allowed on
board unless she flies with a carer.
Despite using the firm regularly and already paying
for the flight, she was informed she must pay £250
for an extra ticket.
eFlow Customer Services reply to Spinal Injuries Ireland’s query Monarch claims it is only following new rules from
re exempt vehicles for disabled drivers the Equality and Human Rights Commission.
But Mrs Swift blasted: “It’s discrimination.
If you drive a vehicle modified for disabled use and it is Monarch has decided all wheelchair users need a
registered by the Vehicle Registration Unit as such then you will carer. The way I’ve been treated is appalling. I’ve
be classed by our system as exempt from paying tolls on the M50 been in touch with the Commission and they tell me
and you will not need to register for an eFlow account. As our I’m good to fly alone.”
system does not go live until August 30 we can not confirm the Unemployed Mrs Swift, of Ruislip, Middlesex, was
status of individual vehicles as yet, but the general rule of thumb is hit with the bombshell when she called to arrange
(confirmed by the NRA) that if your vehicle is physically adapted a specific seat for a flight from Luton to Faro in
and exempt from road tax, you will be exempt from paying tolls. Portugal. She had never had a problem on Monarch
If you are unsure of the status of your vehicle registration you on three previous times.
should contact the vehicle registration unit (VRU) in Shannon. The She said: “I’m now worried that I’m going to miss
VRU LoCall number is 1890 411 412 (calls charged at local rate out on visiting my friends on holiday.”
anywhere in the country). You can also address your queries to Monarch said the new legislation states wheelchair-
the VRU by post or fax: Vehicle Registration Unit, Department of users must be accompanied on flights when they are
the Environment, Heritage and Local Government, Shannon, Co. “unable to fasten their seatbelt, leave their seat and
Clare. reach an emergency exit unaided”.
Fax: (061) 363480 It said: “The level of assistance Mrs Swift is
For the other toll plazas nationwide, you will still be required to requesting would indicate she is unable to fulfil the
stop at the barrier and show your disabled driver’s ID card to be above criteria. In light of this she was advised that
classed as exempt from paying the toll. For more information on she would be required to travel with a carer.”
eFlow log onto www.eflow.ie.
NDA want retention of dedicated
independent agency to deal with
disability issues
Following a meeting of the board of the strategy are long-standing and there is much
National Disability Authority at which ground to be made up to ensure that people
the Government proposals regarding the with disabilities have the same opportunities
rationalisation of non-commercial agencies as everybody else and this is especially Angela Kerins
in the justice equality sector were discussed, relevant in the current difficult economic
the NDA is of the view that progress on climate, when people with disabilities are Government on its policies, is the most
Government commitments on disability even more vulnerable. effective way of delivering the Strategy.
would, at this time, be best served through It is vital, therefore, that a dedicated, The NDA would always want to
the continued support of a dedicated independent agency is working to drive collaborate with Government to ensure that
independent agency focused on disability through the National Disability Strategy the Disability Agenda remains a priority and
issues. which is so critical in improving the lives of that all measures to achieve efficiency and
“There are significant challenges in adults and children with disabilities. Much value for money are taken. We welcome the
addressing the needs of people with remains to be done to ensure its successful consultative process that the Department
disabilities who are among the more implementation,” she said. of Justice, Equality and Law Reform has
vulnerable persons in our society,” says “The NDA plays an important role to engaged in on the proposed amalgamation of
Angela Kerins, Chairperson of the National date in driving the implementation of the non commercial state bodies.
Disability Authority. Disability Strategy and in monitoring The NDA will be making a full report
“The National Disability Strategy is progress,” Angela Kerins added. “At this of its views to the Department of Justice,
at a critical stage of implementation and time the retention of a dedicated independent Equality and Law Reform and will help to
impacts across a wide range of government agency, focused on the issues that impact on inform deliberations on this matter in any
departments and public services. The issues the daily lives of people with disabilities, way we can,” said Ms Kerins.
and problems being tackled under this their families and carers and advising the
13NRH News
Well Done Team NRH – 3 Years CARF Accreditation
T
his being the time for Olympic This accreditation will extend to June
Golds and Major Golf successes, 2011. The CARF correspondence noted
the NRH has also achieved the that “this achievement is an indication
highest possible level of accreditation. of the organisation’s dedication and
Congratulations to everyone at commitment to improve the quality of
NRH. It is with great pleasure that the lives of the person served.”
we can announce that the hospital The survey report also includes a
has been accredited by CARF for a number of ‘recommendations’, areas
period of Three Years for the following that need some improvement. The
programmes:- NRH must produce a written quality
Inpatient Rehabilitation Programmes improvement plan by early November
CIIRP – Hospital (Adults) showing how we will address these NRH and could not have happened
Inpatient Rehabilitation Programmes recommendations. without the dedication, teamwork and
CIIRP – Hospital (Children and The 3 year accreditation is the highest cooperation from all at NRH.
Adolescents) level we could have achieved. This is
a marvellous accomplishment for the
Martin and Cael
I
t is impossible to put into words
what it means having baby Cael Carmel, Aileen, Louisa and Frances
in my life. When my little boy
looks me in the eye and smiles all the Farewell to Frances
years struggling with quadriplegia
F
disappears. rances Hughes Byrne has worked in the National Rehabilitation Hospital
Only for the NRH and especially for the last 18 years. She will be sadly missed and always remembered
Pauline Shields this little miracle for her kindness, willingness and total dedication to her work. She was
would not have happened. Cael, always very pleasant and had excellent communication skills with both patients
Lily and myself would also like and staff.
to thank Spinal Injuries Ireland’s We will all miss that cheerful smile and we wish her every success in her
Outreach Service (Siobhan) for their future endeavours.
continuing support. So all the best Frances - keep in touch.
with thanks From all the gang in the NRH
Martin Sinnott
C W
ongratulations e would
to NRH all like to
Occupational wish Aska
Therapist Eleanor and Daniel the best
Little and her husband of luck for their
Gary on the birth of upcoming marriage
their little girl, Grace which will take
Lauren, who was born place in Poland on
on the 16th September 11th October 2008.
2008.
Grace Lauren Daniel and Aska
14The NRH ‘Rose of OT
Aoife Kelly 2008 Rose of Tralee
T
he Patients and Staff at NRH gathered together in the
Day Room on a Summer(ish) afternoon in August to
wish Aoife Kelly, Occupational Therapist at NRH, the
best of luck for the upcoming Rose of Tralee Contest. Aoife
arrived at the party already wearing, with great pride, the
Crown of the “Rose of OT”. This augured well for the big
night in the Dome, when the Rose of Tralee is finally chosen
following a week of making the best possible impression on
the judges.
Eilish Macklin and Anne Marie Langan spoke on the day
of Aoife’s send-off and conveyed our very best wishes on
behalf of everyone at NRH. Then, led by Maeve Harkness,
all the Patients and staff in the Day Room gave a rousing
rendition which began with the words “The pale moon was
rising above the clear mountains……..”. All who were
there that day could understand perfectly why Aoife had been
announced as the bookies’ favourite to win. And on the night
of the Contest, everyone at NRH was bursting with pride and
absolutely delighted, but not at all surprised, when Aoife won
that crown.
On Aoife’s first day back to work, she took the waiting
crowd by surprise as she strolled from the NRH car park to
the cheers of friends, colleagues and patients who’d expected
to see her emerging from a limousine or a perhaps a Porsche.
Aoife turned down a police escort because she said she’d be
“mortified”.
The children from the Paediatric Service created beautiful
rose decorations that adorned the Day Room for Aoife’s
arrival.
Henry Murdoch, Chairman of the hospital, said on the day
that Aoife has brought honour on herself, her family and on
the hospital and wished her every success during her reign;
he also spoke fondly of the friendly rivalry between Aoife’s
home place of Portroe and Killaloe where Henry has spent a
lot of time over the years.
Aoife Kelly, 2008 Rose of Tralee
Dr. Aine Carroll, Chairperson of NRH Medical Board,
proudly announced that she had once been a ‘Maid of
Mourne’ and said she was stunned by Aoife’s beauty as she
watched her on TV being interviewed by Ray Darcy. Alison
McCann from OT said “Rosemania is the new term that
I’ve come up with” She said “The atmosphere your win has
brought to the hospital has been absolutely astounding with
our male colleagues wrestling each other to be your new
escort.”
Aoife told the huge crowd in the Day Room “I can’t
believe all this is happening for me, I’m not used to this
level of attention all for me,” She went on to name some of
the countries she will visit in the year ahead including New
Zealand, Australia, Dubai, America and Canada. Aoife and
her fiancé Leon de Klerk are planning their wedding next
October.
The Catering staff provided a fabulous feast suitably fit
for a newly crowned Rose and for all the patients and staff
who came to welcome her back to work. As she was signing
photographs for a queue of people in the Day Room, Aoife
told patients “I’ll see you later in my uniform”.
Aoife, Congratulations and very best wishes from everyone
at NRH – you will always be our “Rose of OT”
By Rosemarie Nolan
15Technology
The Appliance of Science
Environmental Control Systems – Appliances
H
ow you use your Environmental Phone/Mobile
Control System ECS is down to
personal choice and circumstance.
Your system could be simplistic and used
merely to control your entertainment
Lamp
system or it could be a comprehensive
home management system that facilitates
independent living
Television
As discussed in the previous 3 issues of
Spinal News, an ECS requires a suitable
input device and a specialised control
unit. To complete the system requires your
selection of appliances/ peripherals or output
Infrared Control
devices. In other words the very things you
hope to manage. Hi Fi system
How do I use my ECS?
Everyday appliances with their own Window Door
remote controls:
It is simple to control things such as TVs. or blue tooth headsets. Phone books of Other appliances:
The control unit is programmed to transmit telephone numbers can be stored on the Some control units can be integrated
signals as if it where the original remote. phone and or control unit for easy dialling. with personal computers. Remote control
Some control units can be connected to toys are a favourite with boys of all
Infra Red (IR) or Radio Frequency (RF) specific mobile phone handsets (consult ECS ages. Some public and private elevators
Sockets: supplier). can be IR controlled. Page turners are
On/off appliances such as lamps or heaters Specialised intercom systems can be used pricey specialised appliances that can be
can be plugged into a specialised power for front door access, and or carer contact. integrated into an ECS and are essential for
socket. This socket receives a signal from a These can also be integrated with the conventional book reading. The Click-to-
control unit when both are programmed to telephone. phone is a specialised stand alone switch
send and receive the same signal. A variety of emergency alarms and call controlled mobile phone and even makes
bells are available. It is possible to link these text messaging possible. The only limitation
to call centres. Alarms can be triggered by is your imagination - it is even possible to
the user or by sensors that detect falls, flood, control your armchair!
fire, or gas. They can also include house
security systems. Conclusion
Please see the previous three ECS articles
Physical environmental control: and don’t be afraid to consult suppliers and
Power Socket Door controllers can be installed in users alike to help you design your own
internal and external doors. External doors environmental control system.
are often custom made to include multipoint I would like to say a special ‘thanks’ to
Specialised equipment: locking that is also controlled by the ECS. all who have offered to participate in my
Some devices are manufactured for One may also consider additional opening ongoing research project entitled “A Generic
home automation and have IR, RF and, options such as an infra red sensor or wall Electronic Assistive Technology (EAT)
more recently, Bluetooth receivers. These mounted push button or strike pad Package for Persons with high Quadriplegia”
devices include door controllers and Electronic window operators, curtain rails Thanks also to all who contributed to the
telephones. These may be retrofitted or could and blinds are less common but useful for “How I Do It” section. Further contributions
require specialised wiring and some house natural light and climate control. are always welcome.
alterations. The ESC can also regulate room
temperature by operating fans and heaters. Michele Verdonck, OT and HRB
What devices can be used in an Research Fellow
ECS Page turner
Entertainment:
Hi-fi, TV, DVD, cable TV are all easily Useful Websites:
controlled. It is also possible to access some http://www.QEDonline.co.uk
game consoles. http://www.pri-liberator.com
http://davecarthy.com
Communication: http://www.odel.co.uk
Specialised telephones can be operated http://www.gewa.se/english
using IR, this requires in built loudspeakers
16Technology and
“
computers have become
very much a lifeline
”
“How I do It”
Technology and Spinal Injury Patients: for TV, phone, opening the door, etc, what I say and either types what I
in conjunction with Dragon Naturally say (most of the time!) or moves up
A
s we all know technology in Speaking for using the computer were and down accordingly if I am doing
general and most especially the options I decided on – I would something like reading the paper on
computers have improved life recommend people to investigate all the the computer. The two main daily
for many people. However in my various options as there are different newspapers (Irish Independent and Irish
case – someone who had very little types available. Times) are now free to read online and
experience of computers until my The Keo is a system that is attached this keeps me up to date with what is
spinal injury in 2005 – technology and to my wheelchair (though can also be going on in the world.
computers have become very much a attached to the bed if needed), with I was lucky enough that I was able to
lifeline. this, I am able to control the TV, answer purchase environmental controls due to
I first experienced environmental the phone, open the door and also use fundraising by neighbours and friends,
controls in the NRH as part of my it with the computer. This gives me a however, I believe everyone who would
rehabilitation. Having a C4/C5 spinal level of independence and privacy that I benefit from these controls should
injury I am a quadriplegic with very would never be able to have without it. have access to them as a minimum
limited movement so environmental I can now spend a couple of hours on when leaving the NRH to go home as
controls were going to be very my own, and should I need help I can it makes a huge difference to life for
important. At the NRH, I was given use the phone or go out the door to a someone with a spinal cord injury.
some guidance on the various types of neighbour’s if necessary.
controls and what was available. On the computer I use Dragon Regards
Having investigated them as much as Naturally Speaking which is a voice Marty Coyne
I could – I decided that the Keo System activated software which recognises
17Travel
Quinta Velha - Portimao, Portugal
A wonderfully restored old
Algarvean farm
Villa Girasol- Sleeps 4 + 1
A
wonderfully restored old Algarvean
farm, now consisting of 4 semi-
detached units. All units open out
on to large terraces, both front and back of
the property, the front having a swimming
pool and BBQ area, and are furnished and
equipped to a high standard.
Quinta Velha is located in a quiet rural
setting just north of the fishing port of
Portimão with it’s many picturesque
fishing villages and rocky beaches in the
surrounding areas, only 10 to 15 minutes
drive away - no more than 10km. Faro
airport is now an easy drive of some 30 to
45 minutes, along the new motorway.
Villa Girasol
Villa Girasol has been designed to be
wheelchair accessible and consists of 2
bedrooms, 1 fully accessible bathroom
with ´wheel-in´ shower, open plan lounge,
dining and kitchen area opening out on to
terraces either side of the property. A very
comfortable and well designed property.
Fully equipped open plan kitchen with
fridge freezer, microwave, full oven and To start the ball rolling, just send an
hob, dishwasher.
email stating the number of people,
Shower/commode chair and other
type of accommodation and car hire
equipment can usually be arranged where
needed, preferred dates and any other
necessary
Freeview Satellite TV/DVD
supporting information, etc. to:-
Private entrances with easy access from
front and back terraces. info@player.pt
Wireless Internet (WiFi) access. Tel.: (+351)289393636
All linen including towels and duvets are
provided.
18You can also read
