Inclusion Ireland Annual Report

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INCLUSION IRELAND
ANNUAL REPORT
2009
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Vision
The Vision of Inclusion Ireland is that of people with an intellectual
disability living and participating in the community with equal rights
as citizens, to live the life of their choice to their fullest potential.
2009
INCLUSION IRELAND ANNUAL REPORT

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Mission
The Mission of Inclusion Ireland is to be the independent champion
of people with an intellectual disability and their families whose
standing and expertise in intellectual disability is acknowledged
and to ensure that people with an intellectual disability have their
voices heard, are not isolated or segregated and can lead more
independent and healthier lives.
Patron
Mary McAleese, President of Ireland, is the Patron of Inclusion
Ireland.
INCLUSION IRELAND ANNUAL REPORT 2009

2009

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From the Chairperson
In 2008, I was honoured by the Board of

Directors of Inclusion Ireland to be appointed as
their Chairperson for the next two years. At the
time, it would have been impossible to imagine
the extent of the decline in the economic
fortunes of the country that would occur in the
following two years, and the impact this would
have, and continues to have, on people with an
intellectual disability, their families, and service
providers.
The end of the multi-annual funding programme, cutbacks in the HSE and in 2009
education for children with special educational needs, and failure to introduce

national standards have made it a difficult climate to work in. Inclusion Ireland
has sought to ensure that frontline services are protected. Our pre-Budget
campaigns and our press conferences in partnership with the National
Parents and Siblings Alliance, Irish Autism Action, Down Syndrome Ireland
and the National Federation of Voluntary Bodies, were aimed at protecting the
budgets to people with disabilities.
As part of this work, Inclusion Ireland has met with John Moloney TD, Minister
of State at the Department of Health and Children with responsibility for
Disability and Mental Health Services. In 2009, Minister Moloney announced a
Value for Money and Policy Review of Disability Services. This important
report is due in late 2010.

During 2009, the needs of children with special educational requirements was
much to the fore, with the cutting of special classes, by the then Minister for
Education and Science Batt O‟Keeffe. The education of children with special
educational needs is very much to the forefront of the policies and philosophy
of Inclusion Ireland. Children with intellectual disabilities are entitled to access
appropriate education and supports relevant to their individual needs.
Inclusion Ireland is a unique organisation and draws on the work and

experiences of a wide cross section of people. It was my privilege to host last
year, a meeting of past Presidents of Inclusion Ireland, to seek their advice
and perception on how best Inclusion Ireland can continue to support people
with intellectual disabilities in the future.
Inclusion Ireland works on many fronts, and its work and achievements are
outlined in this annual report. This work is carried out by a dedicated staff, led
2009 by CEO Deirdre Carroll, in partnership with an equally dedicated Board, which
is informed and influenced by its sub-committee structure. Inclusion Ireland
has two self-advocates on its Board of Directors who were elected during my
term in office, and I wish to thank them and all the Board Members for their
work in 2008 and 2009.
I also wish to thank all our member organisations and individual members for
their support and dedication to Inclusion Ireland, and for their attendance at
our AGMs, general meetings and other events organised by Inclusion Ireland.
They keep us informed of pertinent key issues which affect persons with an
intellectual disability and enable and assist us in our endeavours.
William Shorten
Chairperson
Inclusion Ireland

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From the Chief Executive Officer
I am very pleased to present this „new look‟

annual report of the activities of Inclusion Ireland
during 2009. The report outlines the work
undertaken in 2009, on progressing the seven
major priorities identified by Inclusion Ireland in
its Strategic Plan 2007- 2012.
2009 was an extremely difficult year as the magnitude of the crisis in Ireland‟s
public finances became all too clear. Inclusion Ireland, along with many other
organisations, faced a drop in income, but I am proud to say that cuts to
income did not transform into cuts to any of the services provided over the
year. The range of activities carried out by staff are extensive and their
2009

achievements many, as this report shows.
In June 2009 staff voluntarily took pay cuts, and throughout the year looked at
every way to reduce overhead and administrative costs in order that we could
deliver on the targets set in the plan. I wish to thank each and every one of
them for their commitment, hard work and loyalty to Inclusion Ireland and its
vision.
I wish to thank all our members who have responded so generously to our
requests last year, and who contribute to our work in so many ways. Particular
thanks are due to those parent members who sit on the Health Services
Executive Consultative Committees, where they continue to operate. My
gratitude goes to the Board and its sub-committee members. Inclusion Ireland
is indebted to all these members who give so freely and tirelessly of their time
to work on members‟ behalf.

Bill Shorten is completing his term as Chairperson this year following a two
year term of office, and I wish to express my thanks to Bill for his dedicated
service to Inclusion Ireland and for his support and wise counsel to me as
CEO during a very challenging year. Frieda Finlay is Bill‟s successor, and I
look forward to working with Frieda in the coming year.
It is essential that in these difficult times we keep to the forefront our vision for
people with intellectual disabilities. Inclusion Ireland has worked hard to
achieve the best results for people with disabilities in 2009, and will continue
to do so in 2010.
Deirdre Carroll
CEO
Inclusion Ireland
2009

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CONTENTS
STRATEGIC PRIORITY
STRATEGIC PRIORITY 1: 1: 11
Champion Legislative Reform to Enshrine the Rights of People with Disabilities
STRATEGIC PRIORITY
Promote the Availability, Accessibility and Dissemination of Information that is
current and relevant to Intellectual Disability
STRATEGIC PRIORITY
Provide an Independent Advocacy Service for People with an Intellectual
Disability and their Families
STRATEGIC PRIORITY
Campaign for Appropriate Services for People with an Intellectual Disability
based on a Holistic Assessment of Need at Various Life Stages
STRATEGIC PRIORITY
2009
Promote Independent and Healthy Lives for People with an Intellectual

Disability in their own Communities
STRATEGIC PRIORITY
Promote Public Awareness and a Positive Image of People with an Intellectual
Disability
STRATEGIC PRIORITY
Promote the Image, Identity and Expertise of Inclusion Ireland as the
Representative Voice of People with an Intellectual Disability and their Families
Financial
FINANCIAL Statement
STATEMENT 6262
Appendixes
APPENDIXES 6666

2009

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STRATEGIC PRIORITY 1:
Champion Legislative Reform to Enshrine the Rights
of People with Disabilities
1. Introduction
Seeking legislative reform or new legislation to ensure that people with
intellectual disabilities and their families are treated on an equal basis with
others, and are not discriminated against, is a key part of the work of Inclusion
Ireland. The importance of having legislation to underpin the rights of people
cannot be overestimated. It was not so long ago that it was stated in a
Government Green Paper on Disability, Towards a Full Future (1984), that
people with disabilities required goodwill, not legislation. The last ten years
have seen a major shift in this attitude, primarily because people with
disabilities no longer see themselves as recipients of charity, but as people
who had rights as citizens to fulfill their potential. The Government‟s National
Disability Strategy launched in 2004, was an important landmark in this area. 2009
The aim of the Strategy is to underpin the participation of people with

disabilities in Irish society. When it was launched, the Government
emphasised that the Strategy would legislatively enhance and promote
Government policy of mainstreaming service provision for people with
disabilities. The Strategy comprises of:
Disability Act 2005;

Six Sectoral Plans;
Education for Persons with Special Educational Needs Act 2004
(EPSEN);
Citizens Information Act (2007), including commitment to Personal
Advocacy Service;
Multi-Annual Investment Programme (2005 – 2009);
1 Inclusion Ireland Annual Report 2009 INCLUSION IRELAND ANNUAL REPORT 2009 Page 01
In 2006, the Government announced the establishment of a National Disability
Stakeholders Strategy Monitoring Group (NDSSMG)1, and Inclusion Ireland
was appointed to this Group. The purpose of this Group is to monitor the
progress on the overall implementation of the National Disability Strategy.
Sadly, in 2009 progress has been slow, as will be seen from reports in this
section. The major downturn in the economy led the Government to halt much
of the new legislation. Inclusion Ireland has argued vigorously against these
cuts as a member of the NDSSMG, and as a member of the Disability
Stakeholders Group (DSG)2.
2. Disability Act 2005: Assessment of Need

Part 2 of the Disability Act 2005 was commenced for children under five on 1 st
June 2007. Prior to commencement, the HSE appointed Assessment Officers
and Liaison Officers (Case Managers) in each of the thirty-two Local Health
Offices. A formal complaints system has been established and the
2009 Department has appointed a full time independent Appeals Officer.
The assessment of needs system has now been up and running for over two
and a half years. By the end of November 2009, approximately 6,100

applications for assessments of need under the Act had been received and
over 3,400 had been completed. Approximately 5,080 applications had
commenced Stage 2 at this time, and approximately 878 applications for
assessment were overdue for completion.
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The NDSSMG comprises of representatives from the key disability sector umbrella organisations
(Inclusion Ireland, Mental Health Coalition, Disability Federation of Ireland, National Federation of
Voluntary Bodies, People with Disabilities Ireland, and the Not For Profit Group), and senior officials
representing the Government Departments responsible for implementing the Sectoral plans.
Representatives from other Departments, including the Department of Finance, the Department of
Education and Science and the Department of Justice, Equality and Law Reform, as well as
representatives from ICTU and IBEC are members of the group, which meets twice yearly. Inclusion
Ireland is represented on the NDSSMG by Deirdre Carroll, CEO and alternate Fiona Duignan, Policy
and Projects Manager.
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The Disability Stakeholders Group (DSG) comprises of representatives from the key disability sector
umbrella organisations (Inclusion Ireland, Mental Health Coalition, Disability Federation of Ireland,
National Federation of Voluntary Bodies, People with Disabilities Ireland, and the Not For Profit Group).
The DSG met regularly during 2009 in preparation for meetings with the Senior Government Officials.
The primary concern for the DSG in 2009 was to ensure that the Government commitment to the
National Disability Strategy was maintained during this period of recession. Inclusion Ireland is
represented on this group by Deirdre Carroll and Fiona Duignan.
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2 Inclusion Ireland Annual Report 2009
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It had originally been set out that the part of the Disability Act related to
assessment of need for children aged 5-18 would be fully rolled out in 2010.
Another section of the Disability Act deals with assessments for adult aged
over 18. However, for financial reasons, it was announced in October 2008
that full rollout of the Disability Act would be deferred indefinitely. This means
children of school going age and adults are not entitled in law to an
assessment of their needs.
Deirdre Carroll is a member of the HSE National Steering Group on the

Implementation of the Disability Act. Inclusion Ireland continues to raise the
importance of assessment of need at Government and Departmental level.
An operational review of the Disability Act is required in 2010.
3. Sectoral Plans
Under the Disability Act, six Government Ministers were required to draw up
Sectoral Plans. A consultative committee was then established in each 2009
Department that published a Sectoral Plan. The Departments with Sectoral

Plans are:
Department of Health and Children;

Department of Social and Family Affairs;
Department of Environment, Heritage and Local Government;
Department of Transport;
Department of Enterprise, Trade and Employment;
Department of Communications, Energy and Natural Resources
(formerly Communications, Marine and Natural Resources);
Each Government Department with a Sectoral plan has consultative

committees, which meet between two and four times a year to consult with all
relevant stakeholders on the progress each Department is making in meeting
the targets set out in their individual Plans. The Disability Stakeholders Group
established sub-groups to mirror the Consultative Committees set up by each
INCLUSION IRELAND ANNUAL REPORT 2009 Page 03

Department with a Sectoral Plan. Inclusion Ireland chairs the Department of
Health and Children sub-group. In 2009, Inclusion Ireland was represented on
all Departmental Consultative Committees by the following people:
Department of Health and Children – Deirdre Carroll, CEO;

Department of Social and Family Affairs – Fiona Duignan, Policy and
Projects Manager;
Department of Environment, Heritage and Local Government –
Siobhán Kane, Communications and Information Manager;
Department of Transport – Anne Waldek, Administrator;
Department of Enterprise Trade and Employment – Jim Winters,
Advocacy and Human Rights Officer;
Department of Communications, Energy and Natural Resources –
Siobhán Kane, Communications and Information Manager;
Sectoral Plans for all six Departments were approved by the Oireachtas in
2009 October 2006 and published in December 2006. The Act specifies that the
Plans be reviewed within three years. The Department of Health and Children
reviewed its Plan in 2007 and a further review was completed in 2009. The
Department of Transport's first review was completed in December 2008 and
published in May 2009. Sectoral Plan reviews from the Departments of Social
and Family Affairs, Environment, Heritage and Local Government, and the
Department of Communications, Energy and Natural Resources were
completed in 2009.
4. Education for Persons with Special Educational

Needs Act 2004 (EPSEN)
The Education for Persons with Special Educational Needs Act 2004
(EPSEN) was a much lauded part of the Disability Strategy, and was originally
intended to be fully implemented by 2010. The Act is specifically concerned
with children who have special educational needs. It aims to enhance the
rights of children with disabilities to avail of, and benefit from, an appropriate
education. EPSEN refers to inclusion and notes that: “A child with special
educational needs shall be educated in an inclusive environment with children

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who do not have such needs”3. However, according to substantiating clauses,

this is only the case where it is deemed to be in the best interests of the child
and other children with whom the child is to be educated.
The Act sets up the National Council for Special Education (NCSE) and
outlines the responsibilities of Special Educational Needs Organisers. The Act
also provides for a range of services, which must be provided within a certain
timeframe and in constant consultation with the parents/guardians of the
student, and the student, where appropriate. Such services include
assessments, individual education plans and support services, as well as
providing for a process of mediation and appeals where needs are not met.
The NCSE was formally established in October 2005 under the EPSEN Act,
and in December 2006 it submitted a report on the full implementation of
EPSEN. To date this plan has not been implemented. In October 2008 it was
announced that complete rollout of EPSEN was to be indefinitely halted for
financial reasons. The principal element, which has yet to be rolled out is the
statutory entitlement to an Individual Education Plan, for children with special 2009
education needs. Commenting on the Government‟s decision to halt this very

important piece of legislation, Inclusion Ireland said:
“Individual Education Plans allow for appropriate, focused education

supports to be put in place. Children with special needs may regress
significantly if intervention is not made from an early stage.”
In February 2009 it was announced that 128 special classes were to be cut
from mainstream schools, which were deemed to no longer qualify for the
teaching posts allocated to them. 534 pupils were enrolled in these classes.
Inclusion Ireland:
“Placing children who had been in special classes into mainstream

classrooms, where we know that pupil numbers are often over thirty is
condemning them to failure. Inclusion Ireland believes these cuts are a
3
Government of Ireland (2004) Education for Persons with Special Educational Needs Act, 2004.
Section 2
retrograde step that will cost the state more in the long term.”
Inclusion Ireland met with the Minister for Education Batt O‟Keeffe TD to
discuss these cuts. Following appeals of this decision by schools, the Minister
confirmed in June 2009 that 10 of the 128 classes would be retained.
Fifteen years have passed since The Salamanca Statement and Framework
for Action on Special Needs Education was adopted by the World Conference
on Special Needs Education: Access and Quality (Salamanca, Spain, 10
June, 1994). This framework adopted the right of children with special
educational needs to an inclusive education. Inclusion Ireland was
represented by the Chairperson Bill Shorten at a special conference
organised by Inclusion International in Salamanca in October, which looked at
the progress since 1994 on inclusive education worldwide.
Education and McCarthy Report
2009 In July 2009, the Report of the Special Group on Public Service Numbers and
Expenditure Programmes (McCarthy Report/„An Bord Snip Nua‟), was
published. Several of the recommendations of the Report relate to provisions

for children with special education needs, including suspension of additional
recruitment to the National Education Psychological Service (NEPS), a
proposal to charge for special needs school transport, absorbing the National
Council for Special Education into the Department of Education, and reducing
the number of Special Needs Assistants. No announcement was made by
Government on these recommendations.
Inclusion Ireland believes suspension of recruitment to NEPS will have a

negative impact on children with an intellectual disability. For the last three
years, schools have experienced major delays in getting assessments for
children with disabilities. Assessments are vitally important to a child‟s
development.
Inclusion Ireland rejects the proposal to charge for special needs school
transport. Some of the children availing of this service are forced to travel long
distances to schools as their local school will not accept them. Inclusion

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Ireland supports the statement put forward by the McCarthy Report that “a
change in relation to the provision of escorts would significantly reduce the
overall cost of the service”, but the children involved must be not suffer
because the service is not run efficiently.
Clarification is needed on the future role of the NCSE following the

recommendation in the McCarthy Report to absorb the Council into the
Department of Education. The NCSE was established in 2005 under EPSEN,
and Inclusion Ireland believes abolishing it after only four years would be a
retrograde step.
The McCarthy Report also says there is scope to reduce the number of
Special Needs Assistants (SNAs). The NCSE has arranged for its Special
Educational Needs Organisers (SENOs) to review SNAs allocations in all
schools with a view to ensuring that the criteria governing the allocation of
such posts are properly met. The Department of Education is separately
carrying out a Value for Money and Policy Review of the Special Needs 2009
Assistant Scheme, which was due to be completed by the end of 2009 but

remained ongoing in 2010. Inclusion Ireland received an increasing number of
queries in late 2009 regarding reductions in education resources for children
with special education needs.
Inclusion Ireland expressed serious concern over the lack of an independent

appeals process for parents who are unhappy with the decision to reduce or
cut education resources for their child. Inclusion Ireland has also expressed
concern over the reduction or cutting of education resources in the middle of a
school year, which many principals say is unprecedented. This rollback of
resources is also happening at the same time as class sizes in mainstream
schools are growing. Inclusion Ireland will continue to raise this issue at
Government level.
5. Citizens Information Act (2007)
The Citizens Information Act 2007 set out the development of a Personal
Advocacy Service for people with disabilities. However, in July 2008, the then
Social and Family Affairs Minister Mary Hanafin announced that the Personal
Advocacy Service would not be introduced. The loss of the Personal
Advocacy Service was a massive blow, as it would have put advocacy on a
statutory basis. One of the benefits of this would have been that advocates
could enter a service and request information if necessary. On announcing
that the statutory introduction of a Personal Advocacy Service would not be
introduced in 2008, Minister Hanafin said it would be introduced “at an
appropriate time”. Inclusion Ireland continues to raise this issue at meetings
with Government Ministers and through submissions to the Department of
Social and Family Affairs.
The Citizens Information Board funds advocacy services for the Voluntary and
2009 Community Sector throughout the country under a pilot scheme. Inclusion
Ireland is one of over forty organisations funded under this scheme. This
scheme will end in 2010.
6. New Capacity Legislation
Inclusion Ireland has been campaigning for many years for new legislation
governing capacity. Capacity is a difficult concept but at its heart is an
individual‟s ability to make a decision. A person‟s capacity or lack of capacity
to make a particular decision should never be assumed and should be based
on that individual‟s ability to understand the information available and weigh
up the options and consequences of the decision. The information must be in
a form understandable to the individual and it is not necessary for an
individual to make the choice deemed correct by others. All people with
disabilities should have access to support in making decisions.
Ireland‟s current legislation regarding capacity dates back to the Lunacy Act of
1871. This outdated legislation has resulted in many problems for people with
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Inclusion 2009 Annual Report 2009
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an intellectual disability and their families, as it covers all aspects of making
decisions in a person‟s life, such as inheriting money, making medical
decisions and testifying in court.
In March 2007, Ireland signed the United Nations Convention on the Rights of
Persons with Disabilities, on the day it was opened for signature. At the time,
the then Minister for Justice said the Convention would be ratified as soon as
possible. The Convention has no legal implications unless it is ratified. The
current Government position is that the UN Convention cannot be ratified until
new capacity legislation is passed. In September 2008, the Department of
Justice published the Scheme of Mental Capacity Bill 2008, and asked for
consultation on this document. Inclusion Ireland contributed to this
consultation process. Government promised to bring forward legislation in
2009, but no Bill was brought before the Oireachtas.
In November 2007 Inclusion Ireland hosted a seminar on capacity in Athlone,

which involved presentations from Michael Bach, who is Vice-President of the 2009
Canadian Association for Community Living and is an international expert on

capacity and is based in the Canadian province of British Columbia. The
province of British Columbia is one of the few examples worldwide where
supported decision making can be observed in practice.
Inclusion Ireland Board Member and practicing solicitor Máirín McCartney

also presented at the event. In 2008, Inclusion Ireland published two books
relating to capacity Making Decisions about Money and Making Medical
Decisions.
In February 2009 Inclusion Ireland CEO Deirdre Carroll spoke at a major

conference on capacity, which was sponsored by the National Disability
Authority and the Department of Justice, Equality and Law Reform. Deirdre
gave a presentation on "Scheme of Mental Capacity Bill 2008, and Article 12
of the UN Convention on the Rights of Persons with Disabilities: Questions
and Challenges”.
In August 2009 Inclusion Ireland hosted a roundtable discussion on the need
for new capacity legislation, at which
Professor Michael Bach gave a
presentation. Inclusion Ireland
continued to raise this issue through
meetings with Disability Minister John
Moloney, and statements to the press.
At an advocacy level, Inclusion Ireland
regularly deals with enquiries and
cases related to Ireland‟s outdated
capacity legislation. This reinforces the
urgent need for action in this area.
Michael Bach with Members of the Clare Inclusive Research Group in

August 2009
2009
7. Mental Health Act 2001 and A Vision for Change

The year 2006 will be recognised as a special year in Irish Mental Health
Services, following the commencement of the final sections of the Mental
Health Act 2001. The central element in these sections, is the introduction of
an automatic and independent review of decisions to involuntary detain
patients. Mental Health Tribunals were established, for the automatic review
of all involuntary admissions to approved centres and psychiatric hospitals.
This was a welcome development. All Review Tribunals must consist of a
lawyer as chairman, a consultant psychiatrist and a person who is not a
lawyer or doctor. This brings Ireland into line with other countries in satisfying
Ireland‟s obligations under international conventions on human rights.
A Vision for Change is the Report of the Expert Group on Mental Health
Policy. It details a comprehensive model of mental health service provision for
Ireland and was published in 2006. This report was widely welcomed at the
time. Unfortunately there has been slow progress on the implementation of A
Vision for Change. It includes key recommendations on issues such as the

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closure of all psychiatric hospitals, with resources from these closures

protected for reinvestment; the establishment of countrywide community
mental health teams; and access to services for people with an intellectual
disability who have mental health problems. All of the latter recommendations
remain outstanding. In April 2009, the third report of the Independent
Monitoring Group on A Vision for Change was published, and it reiterates
Inclusion Ireland‟s assertion that mental health services for people with an
intellectual disability are under-resourced and inadequate.
Another key recommendation from A Vision for Change was that people with
an intellectual disability should not be living in psychiatric hospitals. This has
been Government policy since the 1984, as stated in the Government policy
document Planning for the Future, but by the close of 2009, over 300 people
with an intellectual disability remained in psychiatric hospitals and over 200
reside in designated centres (i.e. centres that were previously designated
under the 1945 Mental Health Act).
2009
A Mental Health Commission report published in April 2009 stated that long-

stay patients at St. Luke‟s Hospital in Clonmel included residents with an
intellectual disability and residents with mental illness, with no separate
accommodation for the two groups. Despite six residents with an intellectual
disability leaving the hospital in 2006, 29 people remained. The Report also
described that residents were prescribed long-term treatments with
benzodiazepines and that appropriate resources and expertise to deal with
people with an intellectual disability is not in place. Inclusion Ireland strongly
condemns this practice.
Inclusion Ireland is a member of the Mental Health Coalition and continues to

work on these issues.
8. Charities Act 2009
The Charities Act 2009 was signed into law in March 2009. The Charities Act
aimed to provide for greater accountability and transparency from the charity
sector and to protect against abuse of charitable status and fraud. It also
aimed to enhance public trust and confidence in charities.
Inclusion Ireland is a member of the Charities Tax Reform Group, which was
closely involved in all areas of development of the Charities Act and held a
number of information seminars as the legislation was developed.
The main provisions of the Act include a new Charities Regulatory Authority,
which will be set up to secure compliance and encourage better
administration of charities. It will have strong investigative powers. There will
also be a Register of Charities, on which all charities must register. All
organisations that currently hold charitable tax exemption status, such as
2009 Inclusion Ireland, will automatically be deemed as a charity. After much

discussion in the Oireachtas, it was determined that charities are permitted to
engage in political advocacy that is directly related to advancing their

charitable purposes.
Under the Act, Annual Returns and Annual Activity Reports are to be
presented by charities to the new Authority, and audited accounts will be
required for income above a prescribed threshold of up to a maximum of
€500,000. However, the Act provides that the regulations can vary the level
and detail of information to be required from different classes of charities e.g.
smaller charities. One of the most important elements of the Act was
regulation of fundraising, including the requirement of Garda Permits for all
types of fundraising and the conduct of both cash and non-cash collections.
Operational and administrative fundraising issues are to be regulated by
means of agreed codes of practice with the sector, but if this approach proves
ineffective the Minister has reserved the power to legislate on the issue.
The Act will be commenced in stages by the Minister for Community, Rural
and Gaeltacht Affairs.

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Promote the Availability, Accessibility and
Dissemination of Information that is current and
relevant to Intellectual Disability
1. Introduction
The provision of information on intellectual disability that is current and

relevant is a core function of the work of Inclusion Ireland. People with
disabilities and their families require timely and accurate information about
their entitlements and services available. This information should be in a
format that is accessible. Information is knowledge, and without this
knowledge people cannot make informed choices in their lives. Every year,
Inclusion Ireland strives to improve this service to members, and to the public
at large. It is important that the range and nature of all queries are recorded
as they inform the work of the organisation and indicate the areas where there
2009

are gaps in service provision or where there is a significant policy issue of
concern.
In September 2008 Inclusion Ireland staff began using a new software system
called Salesforce.com. Salesforce.com is a CRM (Constituency Relationship
Management) package, on which Inclusion Ireland logs information on
enquiries, cases, contacts and organisations. All of the information is kept
strictly confidential and the main purpose of the system is to more effectively
manage databases. „Contacts‟ is the term used within this system for
individuals that Inclusion Ireland has contact with, on an ongoing basis (as
distinct from once off enquiries, where there is not ongoing contact). This
system had its first full year of operation in 2009.
2. Information Queries
At the time of writing, Salesforce has 2,586 people logged as „contacts‟ within
the system, 824 of whom were added in 2009. In addition, there are 760
organisations logged in the system, 31 of whom were added in 2009.
Organisations include groups other than Inclusion Ireland‟s own member
organisations, who have been in contact with Inclusion Ireland in relation to a
variety of issues.
The total number of queries recorded during the twelve months of 2009 was
1,984. This shows an increase from 1,665 in 2008. The majority of the contact
made to Inclusion Ireland continues to be from non-members. In 2009, 1,312
contacts were made from non-members, and 672 from members.
Phone contact, followed by email, is the most frequently used method of
contacting Inclusion Ireland. The majority of contacts come from parents and
other family members with professionals a close second. People with an
2009 intellectual disability account for a small, but growing percentage.

The most common queries relate to Inclusion Ireland publications, advocacy,
education, health charges, personal finance, accessing services, social

welfare allowances, wills and trust funds, and issues relating to capacity.
3. Publications 2009
During 2009, Inclusion Ireland continued to receive a high volume of requests

for Inclusion Ireland produced publications, the majority of which are free and
available to download on the website. Hard copies of publications are
forwarded on request, and for many publications, multiple copies are often
requested.
New publications in 2009 included an information booklet on health charges,

an updated directory of services, an elections leaflet in advance of the June
2009 Local and European Elections, and Inclusion Ireland‟s Submission for
Budget 2010. Additional updated factsheets on wills and capacity were
prepared in 2009. A full listing of Inclusion Ireland publications can be found in
Appendix A. Below are details of new publications in 2009:
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Guide to Health Charges: Inclusion Ireland has been contacted by

many individuals and their families who have concerns about the „long
stay‟ or „health charges‟ being applied to those who use residential
services. An information booklet was published in 2009 to address
some of these concerns. The booklet is available in standard and easy-
to-read format and was supported by a grant from the Directorate-
General for Employment, Social Affairs and Equal Opportunities of the
European Commission.
Directory of Services: An updated version of the Directory of Services

was launched online in 2009. The Directory contains updated listings of
parents and friends organisations, disability services and advocacy
services around the country. It is web based, but sections can be
copied and forwarded for members without internet access.
Elections Leaflet - in advance of Local and European Elections

2009: Inclusion Ireland produced a „Doorstep Guide‟ in June 2009 for 2009
Inclusion Ireland members to distribute and use when politicians and

their canvassing teams were campaigning for votes in the European
and Local Elections. It includes information on key issues affecting
people with a disability and their families.
Inclusion Ireland’s Submission for Budget 2010: Inclusion Ireland‟s

Submission for Budget 2010 was distributed to all Oireachtas Members
in advance of the Budget announced in December 2009. It outlines key
issues affecting people with an intellectual disability and their families,
and recommends policy change across a number of Government
Departments.
Factsheets – Wills and Capacity: Separate factsheets were

developed on wills and capacity to provide fast and accessible
information on making a will and issues around capacity. These
accompany a series of factsheets on voting, marriage, medical
decisions, guardianship and sexual relationships.
Newsletter
Inclusion Ireland continues to publish a quarterly newsletter, which contains

news and information on Inclusion Ireland activities and other information
relevant to people with a disability and their families. In addition to distributing
the newsletter to members in both hard copy and digitally, non-members may
sign-up to receive the newsletter via email free of charge. 638 individuals and
organisations directly receive the newsletter in this way.
4. Easy-to-Read
In 2009, Inclusion Ireland continued to be at the forefront of developing

information for people with an intellectual disability in Ireland. In addition to
developing Inclusion Ireland easy-to-read publications, staff have worked with
statutory organisations to develop their publications in an easy-to-read format.
When producing an easy-to-read document, images are used to assist one‟s
2009 understanding of the text. To illustrate the text, photographs, drawings, or
symbols are used.
Inclusion Ireland is increasingly asked to convert standard text documents into

easy-to-read. In addition to Inclusion Ireland easy-to-read projects, such as
the Guide to Health Charges booklet and the Making Choices website,
outside agencies requesting Inclusion Ireland services in 2009 have included:
Literature Review into easy-to-read for the Crisis Pregnancy Agency

and the National Disability Authority regarding crisis pregnancy
counselling, and support services for women with an intellectual
disability;
Citizens Information Board factsheets on housing for people with
disabilities;

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Pathways Project
In 2009 Inclusion Ireland was involved with a European project called

Pathways, which focused on making information easy-to-read and
understandable for people with disabilities. Pathways started in October 2007
and finished in September 2009. Ten partners from eight countries, speaking
six different languages took part in the project. Inclusion Ireland was
represented in this project by Advocacy Officer Áine Ní Aileagáin and
Administrator Paul Alford. Pathways was funded by the Directorate General
for Education of the European Commission. The main aim of Pathways was to
make lifelong learning programmes more accessible for adults with intellectual
disabilities. It is generally viewed that lifelong learning programmes are not
accessible to people with intellectual disabilities. The project produced new
European standards on how to make information easy-to-read.
The project has developed instruments and materials that can be easily used
by staff and trainers working in the field of lifelong learning in order to 2009
guarantee that their programmes are accessible. All materials are available on

the Inclusion Ireland website and on the Pathways project website www.life-
long-learning.eu. Both websites contain four guides that can be used as tools
to make information accessible. A checklist is also available that allows
people to check how easy-to-read a document is.
National Accessible Information Working Group
Inclusion Ireland was invited to become a member of the National Accessible

Working Group. This group was established in November 2008 with a focus
on developing guidelines for producing accessible information. Among others,
this group is comprised of representatives from St. Michael‟s House,
Cheeverstown House, the HSE, Stewarts Hospital and Beaumont Hospital.
Inclusion Ireland is represented on this Group by Advocacy Officer Áine Ní
Aileagáin. The National Accessible group is a forum for discussing and
reporting on best practice in the production of accessible published guidelines
and research evidence relating to accessible information.
5. Website & Social Media
Website developments in 2009

Inclusion Ireland‟s website has been online since 2006. Since that time
„unique visitors‟ have risen from 2,089 unique visitors in 2006 to a total of
34,940 in 2009 (unique visitors show the number of people who visit a website
and are only counted once, no matter how many times they visit the site). The
most viewed pages on the Inclusion Ireland website are the publications page,
the topics page, and pages resulting from search results, through the search
bar on the website. New developments on the website in 2009 include the
services directory, the Dáil Debates section and the upgrading of the „Topics‟
section.
The Dáil Debates section of the website contains extracts from Dáil
Debates and Parliamentary Questions relating to disability issues,
which are categorised by date and topic, and are regularly updated;
2009 A Directory of Services was originally developed by Inclusion Ireland in
2003. The directory was updated in 2009. It is not available in hard
copy, but is searchable via an interactive map of Ireland, by county on

the website. The Directory contains updated listings of parents and
friends organisations, disability services and advocacy services around
the country. As it is web based, it can be updated when new
information is made available;
Development of the Topics section of the website began in 2009.
Documents, websites, press clippings and Inclusion Ireland statements
relating to a given subject are included in this section. Topics pages
developed in 2009 included a webpage on capacity, carers, health
charges and oral healthcare.
Making Choices Website

Making Choices is an easy-to-read website, developed by Inclusion Ireland‟s
Training and Development Officer Sarah Lennon. It was designed to help
people learn about making decisions. The website contains information on
making decisions about money and making decisions about voting. The
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2009 Annual Report 2009
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section on making decision about money shows users what money is and
how it can be spent. It also demonstrates how to use banks, ATMs and how to
save money. The section about voting provides information on what voting
means and different types of elections. It also provides information on what
assistance is available when you are voting. The website has games and
quizzes so users can test the information learnt. The website is developed in
an easy-to-read format, and also provides audio descriptions of certain words.
It is envisioned that additional parts will be added to the Making Choices
website in the future, as issues arise. This website was developed through
Enhancing Disability Services funding from the Department of Justice.
Social Media
In November 2009 Inclusion Ireland launched pages on social networking
sites, Facebook and Twitter. Facebook and Twitter are strands of what is
called social media. Social media is a broad term that includes different forms
of technology that are built around social interaction, such as blogging,
2009
exchanging videos and social networking websites. Inclusion Ireland uses

Facebook and Twitter to provide information to members and the public on
what Inclusion Ireland is doing and news and events that may be of interest to
people with an intellectual disability and their families. At the time of writing
Inclusion Ireland has 512 „fans‟ on Facebook and 215 „followers‟ on Twitter,
and hopes to increase this number going forward in 2010.
Provide an Independent Advocacy Service for People
with an Intellectual Disability and their Families
1. Introduction
Inclusion Ireland has undertaken advocacy work since its foundation in 1961.
The main focus of this early work was to support parents and families in
obtaining appropriate services for their sons and daughters with intellectual
disabilities at a time when there were fewer services available. Advocacy
received more widespread recognition in Ireland during the 1990s. The
movement away from a medical model of disability to a social model, and the
demand for rights based disability legislation were important contributing
factors in ensuring that advocacy was put on the public policy agenda. The
Irish Association of Advocates defines advocacy as:
“Taking action to enable people to express what they want, secure their
2009
rights, represent their interests and obtain services they need.
Advocates and advocacy services work in partnership with the people

they support and take their side. Advocacy promotes social inclusion,
equality, and social justice. Advocacy can be instructed or non-
instructed.”
In 2000, the Board of Inclusion Ireland established an advocacy sub-

committee and in 2003 employed its first dedicated advocacy officer. This
appointment was initially to promote self-advocacy within Inclusion Ireland
and amongst its members (self-advocacy involves supporting an individual or
group of people with an intellectual disability to speak on issues that are
relevant and important to them). Since then, Inclusion Ireland has developed
and expanded its advocacy services to include other forms of advocacy and
has hosted advocacy conferences. The advocacy provided by Inclusion
Ireland is independent and person centred.
In 2009, there were three full-time and two part-time advocacy officers
employed by Inclusion Ireland. Two are funded by the Citizens Information

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Board under its pilot advocacy programme of support for community and
voluntary organisations 2006 - 2010. These advocates work on specific
projects in outside locations, which are described later in this section.
2. Advocacy Cases in 2009

Inclusion Ireland‟s advocacy staff supports people with an intellectual
disability, their parents and family members with particular issues or problems
they may have in their lives and with which they need support to resolve. This
is called representative advocacy. Representative advocacy is a one-to-one
service and focuses on issues. This means that when the advocacy issue is
addressed, the advocacy service ends. Some of the cases are self-referred,
others are referred by professionals or service providers. All cases require
support over time, and involve an advocate meeting with the person with a
disability themselves and/or their family; attending meetings with the person
and/or their family; or attending meetings on their behalf.
2009
In 2009 Inclusion Ireland office based staff dealt with 57 cases.

Ongoing and New Cases
Cases carried over from 2008 - 14
New Cases - 43
Referral Source
Person with a Disability - 8
Parent/Family Member - 42
Professional/Service Provider - 7
Difficulty with, or lack of

Initial/Primary Reason for Referral appropriate service - 18
2009 Capacity/Ward of court - 11
Court - 7
Money/Wills - 3
Bullying - 3
Education - 6
State benefits/Health charges - 3
Self-advocacy - 1
Making a complaint - 3
Discrimination - 1
Access to Therapy Services - 1
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Cases closed in 2009
Cases closed in 2009 - 18
Cases ongoing at end of 2009 - 39
3. National Platform for Self-Advocates

Inclusion Ireland held the first National Self-Advocacy Convention on October
20th 2009 in Croke Park. Self-advocacy is about people with an intellectual 2009
disability having the opportunity to develop skills and confidence to speak up

for themselves individually or as part of a self-advocacy group.
Seventy-five people with an intellectual disability were supported to attend this

event. The event was the initial step in supporting the formation of a National
Platform for people with an intellectual disability. At present there is no
national representative group of people with an intellectual disability. Such
platforms exist in other European countries and provide a forum for their
members to identify issues of concern and relevance to them, and allow them
to present these issues to Governments and to the general public. In recent
years, more and more self-advocates have approached Inclusion Ireland
requesting a forum, at which they can be represented nationally.
Delegates at the 2009 National Self-Advocacy Convention in
Croke Park
At the National Self-Advocacy Convention, self-advocates discussed what a

National Platform would do and how it would be organised. People with an
2009
intellectual disability will be at the very centre of this National Platform. Self-
advocates will be informed and supported to be part of the planning, decision-

making and operation of the National Platform. This Platform will give people
with an intellectual disability the opportunity to highlight issues that are
important to them. It is envisaged that this platform will be a grassroots
organisation working from local, regional and national levels. Training will be
provided to build each individual‟s capacity around making choices, decisions
and effective communication skills. Inclusion Ireland will:
Work in partnership with self-advocates so that the decision making is
with the self-advocates;
Provide resources for self-advocacy groups and their supporters to
make self-advocacy stronger throughout Ireland;
Bring self-advocacy groups together when they have similar needs,
such as training, information and conferences;
Encourage new groups to get started and support a bigger network of
self-advocacy groups;

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The guiding principles for supporting a National Platform for self-advocates

are:
Increase the involvement and the decision making powers of people

with an intellectual disability;
Be inclusive and collaborative, aiming to build partnerships and
networks;
Strengthening what exists already and not creating something new and
separate;
Reinvigorating self-advocacy;
Reducing the isolation of self-advocates from other social policy and
community advocacy;
In 2009 Inclusion Ireland was awarded a grant from Genio (formerly the
Person Centre), to further develop the work of the National Platform in 2010.
Inclusion Ireland‟s Advocacy Officer Liza Kelly is leading this project.
2009
UNIQ-project

Inclusion Ireland, as a member of Inclusion Europe, was invited to become an
„observing partner‟ for the UNIQ-project in 2009. The aim of the UNIQ-project
is to promote the idea of user involvement in all stages of work towards better
quality of social services. UNIQs objective is to discuss, test and describe
strategies to transfer an innovative model of user involvement (NUEVA) into
several European countries. Nueva is an evaluation process that measures
the quality of services for people with an intellectual disability. Nueva is
carried out by people with an intellectual disability. Inclusion Ireland is an
observing partner. Six observing partners were invited to observe the pilot
phase of Nueva and to add their comments on the guidelines and
recommendations for transferability of user-evaluation methods from one
European country to another. Nueva was tested in Germany, Czech Republic
and Norway. Inclusion Ireland observed the testing in Germany in April 2009.
Advocacy Officer Liza Kelly led this project.
4. The European Platform of Self-Advocates
The European Platform of Self-Advocates (EPSA) is part of Inclusion Europe

and consists of organisations of self-advocates throughout Europe. Inclusion
Europe is a European umbrella group, which represents rights based
organisations working with people with an intellectual disability and their
families across Europe. Inclusion Ireland is a member of Inclusion Europe.
In 2009, Inclusion Ireland supported self-advocate and staff member, Paul

Alford, in his work as a steering group member of EPSA. Paul is a member of
the self-advocacy group, the Foley Street Advocacy Group who are members
of EPSA. The steering group met three times in 2009. Meetings were held in
Finland and in Brussels. EPSA aims to make the self-advocacy movement
stronger in all European countries.
The Foley Street Advocacy Group

2009 Inclusion Ireland Advocacy Officer Aine Ni Aileagáin provides independent
support to the Foley Street Advocacy Group. With this support, the Foley
Street Advocacy Group meets once a month in the office of Inclusion Ireland.
The group consists of adults who have lifelong experiences of standing up for
themselves and making their voices heard. The Foley Street Advocacy Group
wants to support people with disabilities to speak up for themselves and be
aware of their rights, and for people to share their experiences and
information on advocacy.
5. Inclusion Ireland’s Involvement with other

Advocacy Projects
I AM (Interagency Advocacy Movement)
Since 2005, Inclusion Ireland sits on the I AM steering committee. I AM is
dedicated to promoting self advocacy, rights awareness, inclusion and
consultation in decision making, dissemination of information and training
opportunities for individuals with disabilities, organisations who support them
and members of the community. Committee members include representatives

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from Enable Ireland, Citizens Information Board, Walkinstown Association and
Cheeverstown House. I AM provides training opportunities on the principles
and concepts of advocacy for people with disabilities. Inclusion Ireland is
represented on this committee by Advocacy Officer Áine Ní Aileagáin.
Including Me Advocacy Service

Inclusion Ireland sits on the Steering Group Committee of the Including Me
Advocacy Service for Persons with an Intellectual Disability (IMAS), which
was established in August 2008. IMAS is a Citizen Information Board funded
service and is based in the Blanchardstown Area Partnership. IMAS provides
an independent professional advocacy service to people with an intellectual
disability using the Daughters of Charity services in Dublin. The Independent
Advocate works with people to identify and understand their needs and
options on a wide variety of issues. The Independent Advocate supports
people to indicate what they want and need, represent their interests, secure
and safeguard their rights and access the services and entitlements they
require. Advocacy Officer Aine Ní Aileagáin represents Inclusion Ireland on
2009
this Steering Committee.

6. Court Proceedings and Advocacy
In November 2009 Inclusion Ireland provided an advocate/mentor for a
person with an intellectual disability charged with a criminal offence. This is
the first time in the history of the State that an advocate has been provided to
support a defendant with an intellectual disability in criminal proceedings. The
advocate‟s role in this instance was to support the person with an intellectual
disability in understanding the court proceedings and their implications. The
court process and the language used in the courts services can be very
complex, and the advocate‟s role is to help the person understand what is
happening. The advocate‟s role is not to put forward a representation for the
person with a disability, nor is it to cast judgment on the outcome of the case.
The advocate‟s role is simply to support the person in understanding the
process and its implications. This process is used in other jurisdictions.
While this was the first occasion Inclusion Ireland was involved in a criminal

case, Inclusion Ireland advocates have been involved in a number of cases
supporting people who are involved in childcare proceedings in civil cases.
Several such cases were ongoing in 2009. This work is recognised by the
Legal Aid Board. In 2007 on foot of a Judicial Review it was agreed that the
Legal Aid Board would put in place arrangements to fund the engaging of
appropriate persons to provide support to clients in child care cases where the
client‟s capacity is impaired. The purpose of appointing a person to assist
clients of impaired capacity is to ensure the provision of an effective legal aid
service to this person. The person must have some capacity, but the Solicitor
must be of the opinion that the capacity is so impaired that it is essential that
the solicitor have professional assistance to communicate effectively with the
client in relation to the subject matter of the proceedings.
7. Independent Personal Advocacy Project

The Independent Personal Advocacy (IPA) project commenced in February
2009 2006. This project is funded by the Citizen Information Board under its Pilot
Advocacy Scheme to Voluntary and Community Groups. Inclusion Ireland
employs an advocate, Gerald MacCann who acts as an independent

advocate to persons with complex needs and challenging behaviour, who use
residential and day services in two large residential disability services: St
Joseph‟s Intellectual Disability Service, St Ita‟s, Portrane, Co. Dublin and
Sisters of Charity of Jesus and Mary, Moore Abbey in Monasterevin, Co.
Laois.
Eighty referrals have been made to the advocate since the start of the project.
In 2009, 45 cases were ongoing. The advocacy provided relates to a variety
of issues such as family contact, day service provision and moving to the
community. A drop-in service, where people with a disability can directly
contact the Advocacy Officer and arrange appointments was developed in
2008, and expanded in 2009. The drop-in service has been of benefit when
people wish to get information on issues such as opening a bank account,
using their money and other information.
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A project management committee oversees the project. The committee has
representatives from services, as well as parent representatives, a person
with a disability and a representative from the Citizens Information Board. Mr
Jerry Buttimer, Inclusion Ireland Board Member, chairs this Committee.
Funding for the Independent Personal Advocacy project is due to finish at the
end of 2010. However discussions are ongoing with the Citizens Information
Board about the continuation of the project in 2011.
Self-Advocacy Group at St. Joseph’s Intellectual Disability Service,

Portrane
At the request of Citizens information Board, Inclusion Ireland agreed to

facilitate a self-advocacy group for interested individuals within St. Joseph‟s
intellectual disability service, Portrane, Co. Dublin. This need was identified
through the Independent Personal Advocacy service described above. The
Independent Personal Advocacy service heard expressions of interest from 2009
residents to meet and discuss their issues and to have a forum to advocate

for their needs. The group began meeting in July 2009.
The group meets every second Wednesday from 5-7pm on campus in St.
Josephs. The group are very enthusiastic, very competent and very
determined to get information and make changes within the service.
Individuals decide themselves if they wish to attend. They are a very strong
group of self-advocates. Inclusion Ireland Advocacy Officer Liza Kelly
facilitates this group. The Citizens Information Board provides funding for the
self-advocacy group, and have agreed to fund it going forward in 2010.
8. The Regional Behaviour Support Service (RBSS)

Advocacy Project
The RBBS Advocacy project commenced in October 2004. Inclusion Ireland,
together with the Citizens Information Board (then Comhairle), and the HSE
Dublin Northeast, came together to develop a model of best practice for an
independent professional advocacy service for people with an intellectual
disability and challenging behaviour. Since 2004, the project has employed,
on a consultancy basis, a forensic psychologist, Dr. Damion McCullagh, to
provide independent advocacy to a small number of clients of the RBBS
service, based in Castleblaney, Co. Monaghan. In 2007, it was agreed to
extend the project to the Louth and Meath area, and to provide an advocacy
service to people with more complex needs and challenging behaviour, who
were receiving an outreach service from the RBBS multi-disciplinary team.
Inclusion Ireland employed Caroline Riley as a part-time advocacy officer on
this project from May 2007 to February 2009. A new Advocacy Officer,
Deirdre Bonar, commenced with this project in July 2009. Deirdre works part-
time.
The HSE Dublin Northeast, Regional Behavioural Support Service was

disbanded in 2009. Significant work was carried out by the Advocacy Officer
in 2009 to broaden the referral sources for the project, as the RBBS was no
longer accepting referrals. The Advocacy Officer met with the HSE Disability
2009 Manager in Louth and Meath and with local disability teams in an attempt to
generate new referrals for the project. This has resulted in two new referrals
to the project in addition to many formal and informal enquiries from local
teams. 12 cases were dealt with under this project in 2009. The advocacy
service is beginning to be seen as a resource in the area, which can provide
advice and information to local service providers.
Current issues being raised with the Advocacy Officer include community
access, managing finances, independence and therapeutic interventions, for
example speech and language therapy. As the majority of cases consist of
non-instructed advocacy, a significant proportion of the work involves visiting,
observing and assessing service users‟ care under a number of „quality of life‟
headings.
Links with the local third level college, Dundalk Institute of Technology, have
been established and this has enabled some third year social care students to
begin carrying out individual day activities with three service users in the
Dundalk area who do not have access to a day service. The service users
have been coming to Dundalk IT on Friday afternoons where the social care
Page 30
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students have been engaging them in arts and crafts activities. Students have
been able to use the college‟s Multi Sensory Room and sensory garden which
has been of great benefit to some service users with significant sensory
needs. It is hoped that these links between students of Dundalk IT and local
service users can be strengthened and built upon to enable students to
provide a service to more service users and gain valuable experience in the
process.
This project is funded by the Citizen Information Board under its Pilot
Advocacy Scheme to Voluntary and Community Groups. Inclusion Ireland
employs and supports the Advocacy Officer. The Project is overseen by a
steering committee, which is chaired by the Citizens Information Board, with
representatives of the HSE Northeast, Inclusion Ireland and a parent
representative. It is due to end in 2010.
9. Publications
2009
In 2009 Inclusion Ireland staff commenced work on publications in relation to

advocacy. These documents will be published in 2010:
Inclusion Ireland Guide to Advocacy – this document will explain what

advocacy is and the different forms of advocacy;
Policies and Procedures for Inclusion Ireland Advocates – this is a
document to guide the work of Inclusion Ireland‟s advocacy staff;
Advocacy Plan, 2010-2012 - this document will set out Inclusion
Ireland‟s priorities for advocacy in this period and the outcomes to be
achieved;
Campaign for Appropriate Services for People with an
Intellectual Disability based on a Holistic Assessment
of Need at Various Life Stages
1. Introduction
The right to an independent assessment of need was one of the key
recommendations of the Commission on the Status of People with Disabilities
Report 1996 A Strategy for Equality. The EPSEN Act 2004 and the Disability
Act 2005 established this right in law, (albeit the right is defined primarily in
relation to health and educational need.) Section 1 of this annual report
highlighted the fact that the right to an independent assessment is available
only to children aged 0-5 years. The commitment to extend this right to
school-going children by 2010 and to adults by 2011 has now been
withdrawn. During 2009, there was a growing debate on how services for
2009 people with disabilities are provided. Are the real needs of people being met?
The emphasis is now placed on the person rather than on what a service can
provide. The economic downturn has put the focus on value for money. Such
value for money reviews must be informed by a bottom up approach, whereby
individual assessment should inform funding. The control of disability funding,
and the transparency surrounding such funding, was an important topic in
2009.
2009 saw horrific revelations about the nature and quality of services for
adults and children with a disability living in residential services. Reports such
as the Ryan Report into institutional abuse in the past raised many questions
about how vulnerable people are protected today. The HSE commissioned
McCoy Report on abuses which occurred in day and residential services for
children and adults in Galway up until 1998, and the subsequent Hynes
Report, 2009, as well as the Reports of the Inspectorate of the Mental Health
Commission on people with intellectual disability in psychiatric hospitals,
2009, show such abuses are not confined to the distant past.

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2. Statutory Standards and Inspection of Disability

Services
In early May 2009, the Health Information and Quality Authority (HIQA)
published National Quality Standards for Residential Services for People with
Disabilities. These standards were developed with the assistance of a
standards advisory group, which met in 2008 and 2009. Inclusion Ireland was
represented on the advisory group by Deirdre Carroll, CEO, and Board
Members Frieda Finlay and Annie Ryan.
It had been envisioned that standards would be implemented on a statutory

basis, with independent inspection from HIQA. However, in June 2009 it was
announced that standards would be introduced on a voluntary basis. Inclusion
Ireland strongly believes that standards must be statutory and must involve
independent inspection. Representatives from Inclusion Ireland met with John
Moloney TD, Minister of State with responsibility for Equality, Disability and
Mental Health, on two occasions in 2009 on the need for standards and
2009
independent inspection, underpinned by statute. In December 2009, on

Budget day, Minister Moloney announced that proposals would be brought to
Government in early 2010 “in respect of the protection of vulnerable adults
with disabilities who are in residential services provided by or on behalf of the
State”.
In May 2009, the Report of the Commission to Inquire into Child Abuse (Ryan
Report) was published. Three chapters of the report detailed abuse against
children with disabilities. One of the key recommendations of the Report was
“Independent inspections are essential…There should be objective national
standards for inspection of all settings where children are placed” (7.12).
There is currently no inspection of children‟s disability services and no

national standards. Minister for Children Barry Andrews published an
implementation plan on the recommendations of the Ryan Report in July
2009. The implementation plan states that there are approximately 150
centres offering residential care or respite care to children with disabilities and
notes that these children are not in the care of the State although they are
cared for by the State - a legal nicety which has prevented them from being
inspected under the Child Care Act of 1991. At present, privately run
residential services for children without disabilities are inspected by the HSE,
and the Social Services Inspectorate (SSI) of HIQA inspects HSE run
residential centres. The Health Act 2007, when finally enacted, will give the
SSI the statutory powers to undertake all inspections. The action to be taken
around inspection of services for children with disabilities described in the
implementation plan, states that the Health Act 2007 will be commenced to
allow for the independent registration and inspection of all residential centres
and respite services for children with a disability by December 2010. This was
reiterated on Budget day in December 2009, when Minister Moloney
announced that funding is being provided in 2010 for this purpose.
Work began on developing standards for children‟s disability services in 2009.

These standards will also encompass other services for children not covered
under current legislation including special care units, foster care services,
2009 children detention schools and hostels for homeless children. A standards
advisory group representing key stakeholders advised on the development of
these standards. Deirdre Carroll represents Inclusion Ireland on this group.
3. Review of the Efficiency and Effectiveness of

Disability Services
In September 2009, John Moloney TD, Minister of State with responsibility for
Equality, Disability and Mental Health, established a Steering Group to
oversee a Review of the Efficiency and Effectiveness of Disability Services in
Ireland. The Steering Group is chaired by an independent chairperson,
Laurence Crowley, and has two members drawn from the Disability Sector,
Department of Health and Children, the Department of Finance and the
Health Services Executive (HSE). Inclusion Ireland wrote to Mr. Crowley
seeking consumer representation on this group but he was unable to facilitate
this request. In a written response to Inclusion Ireland, he said he will “ensure
that the views of service users will be given due weight”.

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The purpose of this in-depth review of disability services will be to assess how
well current services for people with disabilities meet their objectives, and to
assess whether current policy is sustainable in the context of the changing
economic climate. The group aims to produce a full report by September
2010.
A consultation process on the Review was launched in November 2009, and

closed in December 2009. It sought the views of anyone interested in
disability services. Inclusion Ireland submitted its views for this process. Over
two-hundred submissions were received. Further consultation was planned for
2010, to be undertaken by the National Disability Authority by way of focus
groups with key stakeholders, including people with disabilities and parents.
In addition to the Value for Money Review Steering Group, an Expert

Reference Group has been established, chaired by James O‟Grady, Office of
Disability and Mental Health. Deirdre Carroll, Inclusion Ireland CEO, is a
member of this group. The Expert Reference Group will focus on the current 2009
provision of disability services and explore the way forward for the

development of services within the value for money framework. It will also
recommend revised policy objectives.
4. Working Group on Congregated Settings
In 2007, the HSE set up the Working Group on Congregated Settings. The
purpose of the Working Group was to develop proposals and a plan to deliver
community based, person-centred responses for people living in congregated
settings. The Working Group was made up of representatives of key
stakeholders, including voluntary and statutory service providers,
representatives and advocates for people with disabilities, the National
Disability Authority and the Department of Health and Children. The project
was led by Pat Dolan, Local Health Manager, HSE, and managed by Christy
Lynch, CEO of the Kare Association, Kildare, who was seconded to the
project on a full time-basis. Inclusion Ireland was represented by CEO,

Deirdre Carroll. Jean Wright, a self-advocate and member of Inclusion Ireland,
was also a member of the Working Group.
The project was concerned with all individuals with intellectual, physical or
sensory disabilities living in larger congregated settings. Larger congregated
settings were defined for the purpose of the project as living arrangements
whose primary purpose is the provision of services to people with intellectual,
physical or sensory disabilities, where ten or more people share a single living
unit or where the living arrangements are campus-based.
Using this definition and working closely with the Health Research Board,
which manages the national databases for disability services, the Working
Group was provided with a list of seventy-two agencies whose residents
would come within the scope of the project. Residential services that were not
on the national databases, such as residential services for people with autism,
were not included in the project. Intentional communities were also not
included.
2009
People living in settings de-designated under either the Mental Treatment Act
1945 or the Mental Health Act 2001 were included in the scope of the Project.
The term „de-designated unit‟ usually refers to accommodation on the grounds
of psychiatric hospitals, which were formerly designated under these Acts.
The de-designated units are dedicated intellectual disability services with a
separate management structure to the psychiatric services on the same
campus. The clients are included on the National Disability Database.
Meetings of the Working Group were held throughout 2009, and the report of
the Group is due to be completed in early summer.
Psychiatric hospitals
People living in mental health service settings that are not de-designated were
not included, as their needs are due to be addressed as part of the
implementation of the national policy on mental health services, set out in A
Vision for Change. In 2009 there were nearly 300 people with an intellectual
disability living in psychiatric hospitals. The slow progress in moving this

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group to appropriate accommodation was raised with Minister Moloney in

2009, in particular the failure to move a large group of residents at St.
Joseph‟s Intellectual Disability Service out of large wards to a new
development on campus, which was ready for occupation in September 2009.
5. National Review of Adult Day Services
In October 2005, the HSE commenced a National Review of Sheltered

Services for People with Disabilities. This was initiated by the HSE as part of
its obligations under Equality Legislation and the Disability Act. The purpose
of the Review was to obtain information on all aspects of sheltered services,
including establishing a listing of services by location, capacity and
occupational activities. This review was informed by work initiated early in
2005 by the Department of Health and Children, regarding funding
arrangements for sheltered work services.
A national working group, which was composed of representatives of all

2009

stakeholders, was established in August 2007 to conduct a National Review
of Adult Day Services to people with disabilities. From the outset, Inclusion
Ireland has participated on this group, providing input on the development of
the review, supporting consultation and facilitating feedback. Inclusion Ireland
was represented on the working group by Advocacy and Human Rights
Officer Jim Winters. The review included consultation with disability service
providers and other stakeholders, and a census of sheltered workshops.
The review was completed in 2009. The report of the National Working Group,
entitled New Directions, Personal Support Services for Adults with Disabilities,
has been submitted to the HSE. The report recommends a person-centered
approach to the provision of services to adults with disabilities in accordance
with current best practice. The next step is for the report to be considered
internally by the HSE.
6. Alternative Respite
Inclusion Ireland has been involved for a number of years with an alternative
respite project, which is supported by the HSE Dublin Southwest. This project
centres on thirteen separate projects, involving seven agencies. Inclusion
Ireland‟s work centres on three specific projects: a flexible support service; a
recreational clubs and groups project; and a host families project.
The flexible support service aims to test a model, which supports a person
with a disability on their own home. The person and/or their family, pays
directly for this service. The recreational clubs and groups project aims to
increase participation of children and adults with an intellectual disability in
existing clubs and groups. The host families project aims to provide an
innovative marketing solution for sourcing host families. Work on these
projects began in 2009 and completed work in 2009 includes the collation of
information around best practice nationally and internationally on alternative
2009 forms of respite and host families. Work will continue on this project in 2010.
A major international respite conference will be held in Galway in June 2010,

which is organised by the International Short Breaks Association.
Communications and Information Manager Siobhán Kane, represented
Inclusion Ireland on the international organising committee for the conference,
which met several times in 2009.
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Promote Independent and Healthy Lives for People with
an Intellectual Disability in their own Communities
1. Introduction
People with disabilities should be supported to live independent lives in their
own communities. In order to do so, they require support to access all
mainstream services in the first instance. Policy and service provision in many
countries is moving increasingly in the direction of supported living. A range of
flexible supports and services should be provided that are tailored to the
needs of the individual, and which enable them to live in the home of their
choice and to fulfill their goals in life. Supports should be available in all
aspects of life: education supports, health supports, employment supports and
housing supports. All of these supports and services should be provided in
mainstream settings in the first instance. However, access to specialist
services should be available as required, for example specialist mental health
2009
services for people with an intellectual disability if needed, as outlined in A

Vision for Change.
2. Education
Inclusion Ireland continues to support the right of every child and adult with a
disability to avail of, and benefit from, an appropriate education in their own
community (see section 1 for more information on Government policy and
education in 2009). Inclusion Ireland representatives met with Education and
Science Minister Batt O‟Keeffe to discuss education issues in May 2009. The
main issues were cuts to special classes in mainstream schools, training for
teachers and special needs assistants, transport, assessments of children
and access to speech and language therapy.
National Council for Special Education

The National Council for Special Education (NCSE) was established under
the EPSEN Act 2004. The NCSE has a number of functions with regard to the
education of children with special educational needs. It is required to plan and
coordinate the provision of education and support services to children with
special educational needs, and to plan for the integration of education of
these students with the education of students generally. The Minister appoints
the Council. The Council is required to appoint a Consultative Forum to
consult on matters relating to its performance and function. For the past three
years, William Shorten, Chairperson of Inclusion Ireland, has served on this
Forum. The term of office of the Forum has now expired and a new Forum will
be appointed in 2010.
Inclusion Ireland sits on the Steering Group Committee of the Inclusive

Research in Irish Schools Project. This research is being commissioned
through the NCSE. It is a longitudinal study, which is initially planned to be
over a three year period, from 2008-2011. It will examine the provision of
special education within Irish schools, the experiences of students with
special education needs and their associated outcomes. Inclusion Ireland is
represented on this group by Policy and Projects Manager, Fiona Duignan.
2009 National Institute for Intellectual Disability

The National Institute of Intellectual Disability (NIID) is a member of Inclusion
Ireland. The NIID promotes inclusion for people with an intellectual disability
through education, research and advocacy and is an initiative of Trinity
College Dublin. One of its flagship projects is the Certificate in Contemporary
Living, the first full-time course for students with intellectual disabilities,
offered within a third-level setting in Ireland. Inclusion Ireland‟s vice-
chairperson Frieda Finlay sits on the NIID‟s Education and Research sub-
committee membership, and Inclusion Ireland CEO Deirdre Carroll sits on the
Policy and Human Rights sub-committee.
Dublin City University: Service User Involvement and Education

Inclusion Ireland has been involved in a project based in Dublin City
University since February 2009, when a group of people came together to
establish a steering group. This group is supporting a project that hopes to
help change supports and services for people with an intellectual disability.
The vision of the overall project is to create a „legacy effect‟ that will benefit
not only the participants involved, but the organisations or services they

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represent. The project seeks to initiate change by using an educational course

where all members of a team equally participate in change management
through collaboratively working on one project based in one service. Inclusion
Ireland was represented on the working group that developed the modules,
and is a member of the steering group. The first students began a module
entitled „Service Improvement with Cooperative Learning‟. There are four
teams of three people taking this module and each team is supported by a
mentor from a service provider. The team consists of a service user, family
member or carer and a staff member from the service. This module is about
creating meaningful opportunities for people with an intellectual disability,
carers and service providers to learn together in a third level setting with an
assessment that focuses on effecting service change. Students on this course
can fully participate in academic life at DCU.
3. Employment Strategy for People with Disabilities

A Cross Sectoral Group on Employment for people with disabilities was 2009
established in 2009. The Group is co-chaired by the Departments of Health

and Children and Enterprise, Trade and Employment. It includes
representatives of people with disabilities, disability service providers, relevant
government departments, social partners and other agencies. The first
meeting of the forum was held in February 2007. The purpose of the Forum is
to develop a comprehensive employment strategy for people with disabilities.
This committee feeds into the wider work of the Department of Enterprise,
Trade and Employment in respect of its requirements under the Disability Act
(see Section 1). The Consultative Forum met twice in 2009. Inclusion Ireland
is represented by Advocacy and Human Rights Officer, Jim Winters on this
group.
4. National Housing Strategy

The Social Partnership Agreement Towards 2016: Ten-Year Framework
Social Partnership Agreement 2006-2015 includes a commitment to develop a
national housing strategy for people with a disability. Work on the strategy
commenced in October 2007 under the aegis of a National Advisory Group,
headed by the Department of Environment, Heritage and Local Government.
Members of the group include the Department of Health and Children, the
HSE, social partners and other relevant stakeholders including Inclusion
Ireland. The strategy will provide a broad framework to inform the future
development of local authority housing action plans, and will support the
provision of tailored housing and housing supports for people with a disability.
There will be a dedicated chapter in the Strategy on housing and people with
an intellectual disability. In line with a commitment under the Department of
Environment‟s Sectoral Plan, a suite of protocols governing liaison
arrangements between housing authorities and the HSE have been
developed as part of the Strategy. These protocols will provide a strategic
framework for inter-agency cooperation at local level. Inclusion Ireland is
represented by Communications and Information Manager Siobhán Kane on
the advisory group. The group met throughout 2009, and publication of the
Strategy is planned for May 2010.
2009 5. Taking Control

Inclusion Ireland is a member of the group called „Taking Control‟. Taking
Control is made up of people from Inclusion Ireland, Autism LifeCare Trust,

Down Syndrome Ireland, National Parents & Siblings Alliance, NIID – Trinity
College, Partners for Change, Sisters of Charity of Jesus & Mary/Muiriosa
Foundation, Microboard Association of Ireland, Walkinstown Association,
22q11 and other interested people. In 2007 interested parties came together
to discuss the concept of individualised planning and direct funding in the
provision of services for people with a disability. Individualised funding gives
the person with a disability an alternative option for funding the supports that
best meet their needs. Having identified their individual needs, a plan is drawn
up in an attempt to secure funding for the service. The person with a disability
chooses who could support them in the implementation of the plan. The
person directs the supports that are required, where it will be delivered and
how it will be received. This option gives the person and their family the
opportunity to be more involved in directing the services that will best support
their needs. Coupled with other necessary best practices and parameters, it
can significantly enhance the quality of life of a person with a disability.

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Inclusion Ireland is represented on this group by Policy and Projects Manager

Fiona Duignan.
The vision of this group is that people with a disability have the following:
A right to a good life;
A right to have their personhood recognised;
A right to choose their supports and services, including
accommodation;
The ability to make such choices given appropriate support;
A right to be empowered to make these choices;
The Taking Control group organised a conference in October 2008, which
highlighted the concept of individualisation and gave examples from Ireland
and overseas of people taking control of services provided to them. In 2009 a
number of roadshows were held throughout Ireland, in Dublin, Limerick, Laois,
Galway, Cork and Sligo. The purpose of the roadshows was to make families
aware that there is the potential for alternative ways to meet the needs of a
person with a disability. Minister for Equality, Disability and Mental Health
2009

John Moloney TD, on the invitation of Inclusion Ireland, attended a roadshow
in Dublin and gave a commitment to look at individualised funding in a way
that would provide options to people with disabilities. Minister Moloney agreed
to meet with the Taking Control group to discuss the issue further.
6. Social Inclusion and Human Rights
Connecting People Network

Inclusion Ireland has been involved in the Connecting People Network (CPN)
since it was established in the 1990‟s. In 2009, the CPN changed its name
from the Irish Sex Education Network (ISEN), to the Connect People Network.
The aim of the CPN is for people with disabilities to have equal access to
information on sex education and sexual health services. The CPN is run by a
group of people, including Inclusion Ireland Advocacy Officer Áine Ní
Aileagáin. In October 2008 the CPN established a peer support network
group. The peer support group is a place for men and women to come and
chat, and receive information and support on friendships and relationships.
The group meets once a month in Dublin City and these meetings continued
throughout 2009. Representatives from the peer support group, supported by
Áine, presented at the National Disability Authority‟s annual conference in
October 2009.
Other achievements of the CPN include the development of a parents

subcommittee and the parents support network. In 2009, the CPN completed
the update of its database, which provides an invaluable resource to staff and
educators. The CPN also launched a new website, which can be found at
www.connectpeoplenetwork.tk.
Inclusion Programme
In 2008, Inclusion Ireland was invited to take part in an Inclusion Programme
run by the Office of the Minister for Children and Youth Affairs (OMCYA). The
OMCYA established the Inclusion Programme to develop best practice in
participation, by providing new opportunities for seldom-heard young people
2009 to become involved in decision-making structures, such as the Comhairle na
nÓg. The Comhairle na nÓg are youth councils, which were established in
2002 as part of the National Children‟s Strategy. Comhairle na nÓg provide a

forum for children and young people to discuss local and national issues of
relevance to them. Inclusion Ireland engaged with young people with
intellectual disabilities and provided them with support to participate in their
local Comhairle na nÓg. Inclusion Ireland Advocacy Officer Áine Ní Aileagáin
led this project.
Human Rights Committees and Groups

The Intellectual Disability and Human Rights group are comprised of
representatives of Trinity School of Nursing and Midwifery, Inclusion Ireland,
Amnesty International, Seasamh Self-Advocacy Group, Walkinstown
Association, NIID and Aras Attracta. The aims of the group are to look at
rights training and education, campaigning on rights and producing accessible
materials. The first major activity of the group was a Rights Seminar called
Right! Let’s Speak up for Ourselves held in September 2009. Over one-
hundred people with intellectual disabilities from the Leinster area attended

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the seminar in Trinity College Dublin. The aims of the day were to initiate
discussion and collaboration between interested parties on the rights of
persons with intellectual disabilities, and to identify the questions to be
employed in an inclusive survey of the rights of people with intellectual
disabilities in Ireland. Further activities will be planned for 2010, in particular
around the areas of education, rights campaigning, networking and other
rights seminars around Ireland. Inclusion Ireland is represented by Training
and Development Officer Sarah Lennon on this group.
Cheeverstown House and the Walkinstown Association are long-established

providers of services to people with intellectual disabilities in Dublin. Both
agencies are members of Inclusion Ireland and have established Human
Rights Committees. Inclusion Ireland is represented on both of these human
rights committees by Advocacy and Human Rights Officer Jim Winters. The
purpose of these committees is assisting the service providers to protect and
promote the human rights of people that use their services. The committees
are made up of both internal and external stakeholders. Representatives 2009
include staff, family members and people that use services. Membership is

also drawn from advocacy, legal and social justice organisations. The
committees meet regularly to discuss referrals in respect of human rights and
make recommendations to the service directors in each of the services. The
committees are guided by the UN Convention on the Rights of Persons with
Disabilities.
Health Promotion
Special Olympics Ireland established a health promotion project with the aim
of developing a user friendly health promotion pack for people with an
intellectual disability through a four-year project, from 2008 to 2012. The need
for such a pack is based on existing research, which shows that people with
an intellectual disability are a population with a high prevalence of obesity and
other chronic diseases - although other health issues prevalent in the general
population such as smoking and alcohol are not prevalent in the population of
people with an intellectual disability. Currently, there is a lack of appropriate
health promotion material in Ireland for people with an intellectual disability.
Evidence shows that previous health promotion initiatives specifically targeted
at people with intellectual disability have proven effective. Inclusion Ireland is
represented on a special advisory committee which is supporting this work, by
CEO Deirdre Carroll.
Children’s Mental Health Coalition

Inclusion Ireland are represented on the Children‟s Mental Health Coalition,
which Amnesty International Ireland and the Children‟s Rights Alliance
brought together in order to map out the critical issues for children with mental
health problems, identify achievable solutions and collectively lobby for real
improvement in the lives of children. This is intended as a finite project
focusing on two or three achievable objectives over the course of the next two
years.
There is a shared concern that A Vision for Change, the Government‟s

national mental health policy, is failing children in Ireland. The
2009 recommendations concerning children in A Vision for Change largely relate to
mental health services only and those recommendations referencing the role
of other Government Departments are vague, weak and too broad. Therefore
there is an urgent need not only to develop and refine what is in A Vision for
Change, but for a collective lobby holding the Government to account to
vindicate children‟s right to the highest attainable standard of mental health.
This group has put together manifesto, which will call on the Government for
action in four key areas over the next two years, namely, mental health
services, the education system, the criminal justice system and the care
system. Fiona Duignan, Policy and Projects Manager, is Inclusion Ireland‟s
representative on this group.
7. National Carers Strategy

In June 2006, the National Carer‟s Strategy was outlined as a Government
priority in the Social Partnership Agreement Towards 2016 Ten-Year
Framework Social Partnership Agreement 2006-2015. In outlining this priority,
the Carer‟s Strategy is described as a document that will focus “on supporting
informal and family carers in the community”, and would be developed by the
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end of 2007. Government commitment to the Carer‟s Strategy was reiterated

in the 2007 Programme for Government.
However, in March 2009 then Minister for Social and Family Affairs Mary
Hanafin TD, announced that Government had abandoned plans to publish the
Carer‟s Strategy. Extensive consultation and time had already been invested
into the Strategy. Economic circumstances and a consequent inability to
commit resources, was the reason cited for abandoning the long promised
strategy. Inclusion Ireland believes that while some elements of the Strategy
have cost implications, and it is acknowledged that it may be difficult to
commit to such elements, the development of cost-neutral sections of the
Strategy should have been considered.
Another option was the publication of the Strategy with long-term goals and
targets clearly outlined. While some elements may not be achievable in the
short-term, the basic concept of the Strategy could still have been achieved -
setting out the Government's vision for informal and family carers, and 2009
establishing a set of high level goals and actions.

Fiona Duignan, Inclusion Ireland‟s Policy and Projects Manager sat on the
National Consultative Carers Forum, which was developed to push
Government to publish and implement the Carers Strategy. This Forum has
now disbanded as a result of Government decision not to publish the Carers
Strategy. Prior to disbanding, the Forum also successfully worked at getting a
more comprehensive question in Census 2011 on the work done by family
carers and the number of hours per week caring for a family member.
Promote Public Awareness and a Positive Image of
People with an Intellectual Disability
1. Introduction
Historically, people with disabilities have been stigmatised and kept away
from society. This was particularly the experience of people with mental health
issues. The medical model was dominant and persistent. This model focused
on the disability, and segregated services and ignored the many social factors
within the wider environment that prevent people participating in their
communities. The Report of the Commission on the Status of People with
Disabilities (1996), and the Government‟s stated intention at the time to
implement its findings, marked a shift to a social model of disability and a
movement towards mainstreaming. Mainstreaming implies that disabled
people should have access to the same services and opportunities as other
citizens. The National Disability Strategy (2004) recognises that people with
2009 disabilities are entitled to the services and supports they require to participate
fully as citizens.
The support of the public at large was essential to convincing politicians and
public policy makers that disability was an issue on the political agenda, when
individuals with disabilities, and their representative organisations came
together to campaign for rights based disability legislation. The 2003 Special
Olympic World Games was another example of the harnessing of public
support for people with intellectual disabilities, and highlighting their many
achievements. In 2007, Inclusion Ireland adopted a communications strategy
to promote its message. In 2009, Inclusion Ireland continued to build on this
strategy to promote public awareness of the issues, which are relevant to the
lives of people with intellectual disability. Contacts with national and local
media increased, and a pilot project was developed, which targeted the
training of key frontline staff such as nurses and social care workers.
Throughout the year, Inclusion Ireland worked in close collaboration with other
disability organisations, both statutory and non-statutory, to develop these
objectives.
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2. Media and Advocacy Awards

Inclusion Ireland presents Media and Advocacy Awards at AGM every year.
Both awards are presented in recognition of an outstanding contribution in the
promotion of the rights of people with intellectual disability in Ireland.
At AGM 2009, the RTÉ Radio One programme Outside the Box received the
Media Award. Gerry McArdle, the producer and inaugurator of the
programme, accepted the award at AGM on behalf of all the team, including
presenters Olan McGowan and Seonaid Dunne. The programme has been on
the air for nearly ten years and is about and for people with a disability. The
programme was due to finish in 2009, but has since been reignited.
Representatives of Inclusion Ireland have taken part in many debates on the
programme on issues such as capacity and relationships. The programme
also focuses on other areas not often discussed in mainstream media such as
a surfing camp for children with autism, or a music session where all music
was written by, or performed by, someone with a disability.
2009
The Advocacy Award was presented to the „Our Voice Advocacy Service‟.

„Our Voice‟ comprises of a group of self-advocates in Sligo who work in
partnership with Sligo Local Authorities Communications Office, to create
greater awareness of the Local Authority‟s role in the community, to respond
to specific queries raised, and to encourage improved interaction and
engagement, primarily for people with disabilities. „Our Voice‟ is funded by
the Citizens Information Board and provides independent advocacy to
members of the Sligo Interagency Group in the Sligo area, and is committed
to the development of advocacy in Sligo.
3. Parent Speakers Panel

For many years, Inclusion Ireland has delivered talks to training professionals
such as doctors, nurses and social workers. A decision was made in 2007 to
formalise this process and increase participation across the country. A pilot
panel of parents was established in 2009 following an initial training day in
Inclusion Ireland‟s office. Owing to the large interest from S.N.A.P. (Special
Needs Active Parents) in Dundalk, this area was selected for the pilot.

S.N.A.P. is a parent support group with a particular interest in developing
information and working towards a positive image of disability. Inclusion
Ireland Training and Development Officer Sarah Lennon is leading this
project.
Inclusion Ireland approached Dundalk Institute of Technology‟s School of

Nursing (Dundalk IT) regarding parents speaking with students about their
experience as a parent, and how professionals interacted in positive and
negative ways with them. It was hoped the students would use these
presentations to inform them in their future professional lives. Inclusion
Ireland‟s approach to Dundalk IT was received very enthusiastically, and the
content and timing of future presentations were discussed at a preliminary
meeting.
Dundalk IT identified certain areas that they felt that students would benefit
from input around, such as the impact of having a child with intellectual
2009 disability on parents and siblings, how parents are/should be told that their
child has a disability, the effect of such news, and if/how family life has
changed.
A panel of six interested parents was established and a number of training

and practice meetings held. To date, the Dundalk panel has given input to
early childhood studies, intellectual disability nursing and social care students.
The presentations ranged from one to two hours in length, and took the form
of the story of the parents from birth to date, followed by questions and
discussion from the students.
The feedback has been excellent from the students who attended and some
examples are below. Inclusion Ireland will be looking to build on the pilot and
create links with other training centres across Ireland. As part of possible
expansion, representatives from Inclusion Ireland met the Chief
Superintendent of Dublin North-Central in early 2009 to discuss the possibility
of expanding this project to include training to Gardaí at the training centre in
Templemore. Work will continue on this project in 2010.

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Student‟s feedback:
“The parent’s treatment at the hands of the
medical profession has made me think
about how I want to be as a Nurse.”
“Real life stories and being able to ask questions was particularly helpful to
studies.”
“[The talk] made it life- like instead of reading it in a book. I found

it shocking how difficult finding play-school settings for children
with special needs is, the importance of education is for us to
ensure that these kind of problems do not continue into the
future.”
“I found both speakers were very good at expressing how a child

with a disability affects the family. I found this helpful as
sometimes you forget about the entire family.” 2009

“Hearing about how important the role early Childhood Studies teachers were
to getting their child into pre-school and how important their roles were in
helping the children and accepting them into the groups and schools, made
me very happy and excited about my forthcoming placement.”
“The parent’s openness about their feelings about having a child with special
needs made me feel more at ease and confident if I did want to approach
other parents about their child with special needs in the future.”
“It was interesting to hear points from a parent’s perspective – it is not

something that can be taught.”
4. Working in partnership with the HSE
HSE Consultative Committees
HSE Consultative Committees were formally instated in 1997 following a
recommendation from the Report Enhancing the Partnership. This Report
recommended that two types of committees be formed, „Mental Handicap
Services Consultative Committees‟ and „Mental Handicap Services
Development Committees‟. It was recommended that representatives of
parents and families sit on the Consultative Committees. Inclusion Ireland was
asked to nominate parent representatives on these Committees. By 2001 all
Health Boards had established Intellectual Disability Consultative
Committees. However, with the establishment of the HSE in 2004, the Health
Boards were abolished and new administrative areas were set up. Since that
time, the position of the Consultative Committees has been very uncertain.
The Consultative Committees continue to work inconsistently, depending on

the area. Inclusion Ireland invited all current parent representatives to a
2009 meeting in May 2009 with representatives from the Midwest, East coast,
Midlands, Southeast and Northern areas in attendance. The purpose of the
meeting was to hear feedback from the regions and to discuss the parent
representative guidelines. It was discussed and agreed that parent
representatives should report back to Inclusion Ireland, and that an induction
pack should be prepared by Inclusion Ireland for new representatives. It was
discovered that some areas are working very well and meeting regularly and
other areas are meeting irregularly or have been effectively wound down.
Inclusion Ireland requested updates on the future development of the HSE
Consultative Committees and towards the end of 2009, draft proposals for the
future organisation of the committees were developed by the HSE and
distributed to all current parent representatives. The committees would be
organised along three levels – local, regional and national. The proposed new
local committees would be across all disability and would not be split into
intellectual and physical/sensory, as is the current system. The local
committees would be along the Local Health Office areas and would feed into
the regional committees who would in turn feed into a national committee.
Inclusion Ireland continues to work on this issue.

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5. Submissions
Inclusion Ireland regularly provides submissions to Government Departments
and Agencies on a range of initiatives and projects, to ensure the voice of
people with an intellectual disability is heard. Submissions made in 2009
were:
Comprehensive Employment Strategy for People with Disabilities:
Submission to Department of Enterprise, Trade and Employment;
Sectoral Plans under National Disability Strategy - Submissions to:
o Department of Environment, Heritage and Local Government;
o Department of Health and Children;
o Department of Enterprise, Trade and Employment;
Impact of Social Welfare Cuts: Submission to Department of Social and
Family Affairs;
Submission in advance of Budget 2010: Forwarded to all Government
Departments;
National Positive Ageing Strategy: Submission to Department of Health 2009
and Children;

National Housing Strategy: Submission to Department of Environment,
Heritage and Local Government;
Implementation of Home-Care Packages: Submission to National
Economic Social Forum;
Review of Disability Allowance: Submission to Department of Social
and Family Affairs;
Review of the Efficiency and Effectiveness of Disability Services in
Ireland: Submission on Consultation Process to the Office of the
Minister for Equality, Disability and Mental Health;
Implementation of a Vision for Change: Submission to the Department
of Health and Children;
Promote the Image, Identity and Expertise of Inclusion
Ireland as the Representative Voice of People with an
Intellectual Disability and their Families
1. Introduction
In order to deliver on such a wide ranging strategy, Inclusion Ireland must
have a recognised voice nationally and internationally, based on a strong
membership and secure funding. It must also have a corporate governance
structure based on compliance with all relevant legislation and the highest
ethical values. 2009 was a difficult year in this regard given the economic
downturn but action was taken to ensure sufficient funding was available to
carry out the work plan for 2009.
The Board also looked at ensuring all relevant policies and procedures were
in place and were updated. Membership remained buoyant, which was very
2009 encouraging. The communications strategy ensured that press coverage was
significant throughout the year and the views of Inclusion Ireland was made
known both in the media and to local and national politicians, on all topics,
which had an impact on people with an intellectual disability and their families.
2. Members
Inclusion Ireland had 294 individual members in 2009 and 142 member
organisations. Organisations who are members of Inclusion Ireland range
from very large services to small parents and friends organisations, as well as
national organisations such as Special Olympics Ireland and Down Syndrome
Ireland.
Members meetings are held twice every year, and in 2009 meetings were
held in June and November. Members meetings are held at Inclusion Ireland‟s
office in Foley Street, Dublin 1, and provide an update to members on
Inclusion Ireland activities in the previous six months. In addition to this
function, a guest speaker also presents to assembled members. In June
2009, Frank Goodwin, Chairperson of the Carers Association, made a

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presentation at the members meeting on the National Carers Strategy and the
impact of cuts on carers. In November 2009, Seamus Greene of the „Taking
Control‟ group gave a presentation on how individualised funding could
benefit some people with an intellectual disability and their families.
AGM
Inclusion Ireland‟s 2009 AGM and Annual Conference was held in Monaghan
on 27th and 28th March. The theme of AGM was „Living life to the full – how
this can be achieved for people with an intellectual disability‟. Highlights
included a debate on issues affecting people a disability and their families,
which was chaired by Mark Little from Primetime on RTÉ, and featured
questions to a panel of local TDs. The keynote address was on the
implementation of statutory standards and inspection of disability services in
both the Republic and in Northern Ireland. Niall Byrne of the Health
Information and Quality Authority spoke about the development of standards
for residential services, and John Black of the Regulation and Quality
2009
Improvement Authority in Northern Ireland spoke about the introduction of

standards across care services in that jurisdiction. Dr. John Owens, former
Chairperson of the Mental Health Commission, spoke on mental health
problems and people with an intellectual disability, and RTÉ presenter Dr.
Mark Hamilton spoke on issues around managing your healthcare and making
medical decisions. Self-advocate Marie-Therése Corbett, and parent Maurice
O‟Connell also spoke.
Dan Rogan received the prestigious John Ryan Award at AGM for his
contribution towards the promotion of the rights of people with an intellectual
disability. Dan has been Chairman of the Monaghan Parents and Friends
Association of People with an Intellectual Disability for over twenty years and
was voted onto the Board of Inclusion Ireland at AGM.
AGM 2009, from left to right are: Dan Rogan, Dr. Mark
2009 Hamilton, Deirdre Carroll, William Shorten and Mark Little
3. Budgets 2009 and 2010

Budget 2009 was announced earlier than usual in October 2008, due to the
worsening economic crisis. A subsequent „mini-budget‟ was introduced in
April 2009. Inclusion Ireland actively campaigned to ensure that people with
disabilities were not affected by the downturn in economic fortunes.
At the Budget in October 2008, it was announced that further rollout of the
Education for Persons with Special Education Needs Act (EPSEN), which was
a core part of the Disability Strategy, would be put on hold indefinitely. In the
same Budget, then Social and Family Affairs Minister Mary Hanafin
announced that the qualifying age for Disability Allowance would be raised
from 16 to 18. In response to public outcry on the issue, Minister Hanafin
announced there would be no change to the qualifying age pending a full
review of the Disability Allowance. While there was no money for new
services in 2009, an additional sum of €7.2 million was allocated in Budget
2009 for 90 new therapy posts (speech and language therapists, behaviour
Page 56 56 ANNUAL
REPORTIreland
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therapists and occupational therapists), for disability services. The progress

made as at 31st December 2009, was as follows:
45.85 Whole Time Equivalent staff (WTEs) - filled as at 31st December
2009;
8.65 WTEs - agreed start dates for early 2010;
19.80 WTEs - accepted posts and clearances are currently being
processed;
15.70 WTEs - recruitment process in progress;
Budget 2010 was announced in early December 2009. In October 2009,

Inclusion Ireland held a joint pre-Budget press conference with Irish Autism
Action, Down Syndrome Ireland, the National Parents and Siblings Alliance
and the Federation of Voluntary Bodies. Publicity in advance of the press
conference called on the Government to think firmly in economic terms:
“Supporting children with an intellectual disability from an early age

saves the State in the long-term and restructuring and reimagining how 2009
disability services are provided can save the State millions. Both also

result in a better quality of life for the person with a disability and their
families.”
The objective of the press conference was to ensure the voice of people with
an intellectual disability and autism was heard in advance of the Budget. The
press conference was well attended and resulting media coverage included
the Irish Times, Irish Independent, Irish Examiner and on RTÉ‟s Six One
News. In addition, Inclusion Ireland drafted a letter for members to forward to
their local political representatives in advance of the press conference, and
there were many Members of the Oireachtas in attendance.
Representatives of the five leading intellectual disability and autism
representative associations at pre-Budget 2010 press conference
The budget announced in December 2009 contained widespread cuts across

social welfare, including cuts to people on Disability Allowance and Carers
2009 Allowance. The Disability Allowance now stands at €196 a week and Carers
Allowance for those under 66 is €212. These cutbacks were compounded by
other cuts to child benefit, the prescription levy and cuts in dental treatment.
John Moloney TD, Minister of State with responsibility for Equality, Disability
and Mental Health announced that funding would be brought to Government
in early 2010 “in respect of the protection of vulnerable adults with disabilities
who are in residential services provided by or on behalf of the State”. It was
also announced that funding for inspection of residential services for children
with a disability would be put aside in 2010.
Minster Moloney also announced that Innovation Funding of €3 million was

provided in the 2010 HSE Vote in respect of disability and mental health. This
funding will be allocated to The Person Centre, a non-profit organisation
which has established a fund with support from The Atlantic Philanthropies to
support transition from institutional to person-centred models of care in
disability and mental health services. Proposals for the project will be invited
in 2010.

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4. Funding
Inclusion Ireland focused in 2009 on new funding streams that would not
compete with members‟ fundraising activities. Grants were obtained from
Governmental Departments and Agencies such as the Equality Authority and
the Department of Community, Rural and Gaeltacht Affairs. Grants were also
received from philanthropic organisations including the Athlantic Philanthropic
Association and the JP McManus Fund. Small unsolicited donations were also
gratefully received, including a donation following a fundraising day from the
Ballyconneely parents and friends group (Galway).
5. International Activities
International Organisations
Inclusion Ireland continues to be a member organisation of both Inclusion
Europe and Inclusion International.
Inclusion Europe is a non-profit organisation that campaigns for the rights and 2009
interests of people with intellectual disabilities and their families throughout

Europe. Inclusion Europe co-ordinates activities in many European countries,
responds to European policy proposals and advises the European
Commission and members of the European Parliament on disability issues.
In June 2009 Inclusion Ireland was represented at the Europe in Action

conference in Tampere, Finland. The theme of the conference was „Full
Participation and Equality‟. This conference was organised by Inclusion
Europe and The Finnish Association for Persons with Intellectual Disabilities.
The conference was attended by self-advocates and support staff from all
over Europe. Paul Alford of Inclusion Ireland who is a member of the
European Platform of Self Advocates, gave a presentation on Capacity and
Supported Decision Making.
Inclusion International is an international umbrella group of family-based

organisations advocating for the human rights of people with intellectual
disabilities worldwide. It represents over 200 member federations in 115
countries and has been in operation for over 40 years. It is officially
recognised by the United Nations and works with international agencies
including the World Health Organization, World Bank and United Nations
International Children‟s Fund (UNICEF) to promote inclusive approaches to
policy, practice and investment strategies.
Adam’s Fund
The Adams Fund has been in existence since 1981 and was named after
Colonel Joe Adams in appreciation of his pioneering work for Inclusion
Ireland. The Fund has been used to support the Bulgarian Parents and
Friends Association (BAPID) to fight for better conditions for children and
adults with an intellectual disability in Bulgaria. There have also been
initiatives involving Irish intellectual disability services acting as partners and
helping to set up new day care centres and community homes. Recent
developments have included the development of a pilot self-advocacy
programme in several towns in central Bulgaria and support for people with an
2009 intellectual disability in Macedonia who are living in large institutions. John
O'Gorman oversees the Fund. Members of Inclusion Ireland have generously
donated to the Fund following appeals for donations over the last number of
years. Because of that support, new services have been developed and
significant progress has been made. In 2009 €3,000 was donated from to the
Adam‟s Fund.
6. Internal Policies
Inclusion Ireland developed internal policies and procedures in 2009, which
were passed by the Board of Inclusion Ireland. Policies included maternity
leave policy; disciplinary policy and procedure; freedom of information policy;
and safety statement (see Appendix B for full listing of all policies). The
development of policies was led by Policy and Projects Manager Fiona
Duignan, and followed corporate governance training with the Board and
Management Team of Inclusion Ireland in 2008.

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7. Talks and Presentations from Inclusion Ireland
Inclusion Ireland continues to provide information talks and information stands

on a variety of issues at national, regional and local events, including
conferences, information evenings and seminars. Inclusion Ireland also
provides information stands at events around the country. In 2009, Inclusion
Ireland staff gave 26 talks and presentations and provided information stands
at 14 events.
8. Media
Inclusion Ireland continues to raise issues concerning people with an

intellectual disability and their families in local and national print and
broadcast media. In 2009, Inclusion Ireland recorded 14 interviews on
national broadcast media; 31 quotes in national print media; 22 interviews
with local broadcast media; and 23 mentions in regional print media. In
addition, Inclusion Ireland CEO Deirdre Carroll wrote three opinion pieces in
2009

2009 for national print media, which are published in full, in Appendix G.
Commentary of Inclusion Ireland financial position as
at 31st December 2009
The statutory financial statements have been presented and approved by the
Board of Directors. The Finance Committee for Inclusion Ireland is charged by
the Board of Directors with overseeing the review of the finances on a
quarterly basis. The Committee comprises of the CEO Deirdre Carroll, Policy
and Projects Manager Fiona Duignan, four Board Members, and Stephen
Kealy and Eamon Slevin, acting in the role of independent members.
As with all charities, 2009 was a particularly difficult year for Inclusion Ireland.
Management and the Finance Committee met frequently during the year to
maintain close control on costs. As a result of the close vigilance the deficit on
the Income and Expenditure Account has been reduced from €140,352 in
2008 to €16,352 in 2009.
2009 The main source of expenditure is staffing, which accounts for 72% of
Inclusion‟s costs. This is not unusual as all of Inclusion‟s services are
delivered by its team of staff. During the year all staff accepted a cut in
salaries and pension ranging from 2.5% to 10%. While payroll shows an
increase of 2% in 2009, this is the result of full cost of new staff member in
2009. The pay cuts were effective from June 2009 and therefore the payroll
reduction on a full year basis will be in the order of €34,000.
Turning to 2010, the emphasis will be on maintaining income from current

sources, generating new income from once off donations and funding of new
projects.
Income is budgeted to be in line with 2009. As with last year, there will be
strong emphasis on cost control. Full year savings on payroll and pension
costs will drive the reductions of €36,000. Overall there will be significant
vigilance on the cash flows to ensure that Inclusion‟s strategic objectives can
continue to be achieved.
Page 62 62 ANNUAL
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st s
BalanceBalance
sheet assheet
at 31as at 31st December
December 2009 2009
2009 2009 2008 2008

€ €€ € € €€ €
Fixed assets
Fixed assets
Tangible assets
Tangible assets 841,447 841,447 876,277 876,277
Current assets
Current assets
Debtors Debtors 9,548 9,548 9,726 9,726
Cash at bank andatinbank
Cash handand in hand 159,861 159,861 132,096 132,096
_______ _______ _______ _______
169,409 169,409 141,822 141,822
Creditors: amounts
Creditors:falling
amounts falling
due within due
one within
year one year (136,091) (136,091) (91,497) (91,497)
_______ _______ _______ _______
Net currentNet
assets
current assets 33,318 33,318 50,325 50,325
_______ _______ _______ _______
Total assets lessassets
Total current
less current
liabilities liabilities 874,765 874,765 926,602 926,602 2009
Creditors: amounts
Creditors:falling due falling due
amounts

after more after
than one
moreyear
than one year (801,237) (801,237) (836,322) (836,322)
_______ _______ _______ _______
Net assets Net assets 73,528 73,528 90,279 90,279
_______ _______ _______ _______
Capital andCapital
reserves
and reserves
Revenue reserves
Revenueaccount
reserves account 73,528 73,528 90,280 90,280
_______ _______ _______ _______
Members' funds
Members' funds 73,528 73,528 90,279 90,279
_______ _______ _______ _______
63 Inclusion
63 Ireland Annual
Inclusion Report
Ireland 2009Report 2009
Annual INCLUSION IRELAND ANNUAL REPORT 2009 Page 63
Income for the year to 31st December 2009
Year ended Year ended

2009 2008
€ €
Revenue Grant - Health Services Executive 479,351 491,363
Social Community & Family Affairs 9,000 9,000
Citizens Information Board Personal Advocacy 77,400 82,250
Citizen Informations Board General Advocacy 40,000 19,998
Citizens Information Board HSE/NE RBBS Grant 52,500 62,319
HSE Respite grant 39,000 -
Affiliation Fees 39,846 37,616
Individual Fees 8,491 6,750
Book Sales 1,561 2,487
Conference & Seminar Fees - 20,856
Fees earned 1,575 9,624
2009
Dep. of Health & Children - Comhairle na nÓg 10,000 9,166
Bequests & Donations received 18,113 4,366

Trust Fund Receipts/Allocations - 2,276
Dep. of Community, Rural & Gaeltacht Affairs grant 50,880 53,001
Adams Fund Donations 9,060 5,050
EDS Pobal - 15,440
Department of the Taoiseach website - 36,158
Equality Authority Grant 15,000 2,000
_______ _______
851,777 869,720
_______ _______
Page 64
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Overhead Expenses for the year to 31st December 2009

Year ended Year ended
2009 2008
€ €
Wages and salaries 597,069 584,017
Staff pension costs 49,294 74,623
Staff and executive committee training 680 14,331
Parent training - 3,522
Recruitment costs 1,572 3,003
Insurance 3,913 3,977
Leasing of office equipment 4,284 5,219
Light and heat 6,099 5,335
Cleaning and waste charges 2,030 1,981
Repairs and maintenance 17,871 32,188
Print and stationery 16,025 39,452
Advertising & publicity 3,714 12,371
Independent advocate comhairle 20,840 22,838
2009
Telephone, postage and web 11,351 43,745

Travel expenses 13,070 23,895
Research expenditure - 14,084
Hardship & grant payments 800 1,000
Conference, meeting and seminar costs 9,943 39,192
Legal and professional fees 3,282 7,104
Trust visits 2,445 2,027
AGM costs 12,351 12,012
Audit & accountancy fees 5,647 9,462
Subscriptions & affiliation fees 5,270 7,335
Bank current account interest & charges 1,359 1,289
Sundry 5,790 7,987
Adams fund donations 3,000 791
Depreciation on freehold property 17,143 17,143
Depreciation on Fixtures Fittings & Equipment 20,583 20,149
_________ _________
835,425 1,010,072
Loss / Surplus (16,352) (140,352)
======== =========
Appendix A - Inclusion Ireland Publications
Below is a list of booklets and leaflets published by Inclusion Ireland. The

majority are free and available to download from the Inclusion Ireland website,
but hard copies are also forwarded on request.
About Us
This is an information leaflet about Inclusion Ireland who we are and what we do, and
includes group and individual membership forms. - Free
A Chance to Learn (2005)

An information booklet for parents and families of children with special educational
needs. - €10
A Chance to Work (2007)

This discussion document is based on the findings of a research project about
sheltered workshops and sheltered employment for people with an intellectual
disability. - €10
A Guide to Voting (updated in 2008)

2009 An information guide on voting in easy-to-read, written for people with an intellectual
disability. - Free
Alzheimer’s Dementia in Persons with Intellectual Disability

An information guide on Alzheimer‟s dementia in people with an intellectual disability.
- €5
Directory of Services for People with Intellectual Disability (2009)

This is a comprehensive listing of all disability services for people with intellectual
disability in Ireland, as well as parents and friends groups and advocacy services.-
Free
Elections Leaflet - in advance of Local and European Elections 2009

- Free
Factsheets are available on the following:

Voting
Guardianship
Marriage
Medical Decisions
Sexual Relationships
Capacity
Wills
- Free
Page 66 66 ANNUAL
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Guide to Health Charges
Inclusion Ireland has been contacted by many individuals and their families who have
concerns about the „long stay‟ or „health charges‟ being applied to those who use
residential services. This is an information note to address some of these concerns. It
is available in standard and easy-to-read format. - Free
Intellectual Disability Causes & Prevention

This is a question and answer booklet covering the most common questions asked
about intellectual disability. - Free
Inclusion Ireland Submission for Budget 2010

Inclusion Ireland's Submission for Budget 2010 outlines key issues affecting people
with an intellectual disability and their families, and recommends policy change
across a number of Government Departments. - Free
Inclusion Ireland Strategic Plan 2007-2012

The Strategic Plan consolidates and builds on previous work and achievements and
commits Inclusion Ireland to a five year work plan. - Free
Making a Will - An Easy to Read Guide to Making a Will (2008)

An easy-to-read guide on the issues involved with making a will or leaving
inheritance to a person with intellectual disability. - Free
2009
Making Decisions About Money (2008)

An easy-to-read guide about managing your money. - Free
Making Medical Decisions (2008)

An information booklet for parents and families of children and adults with an
intellectual disability. - Free
My Voice My Choice (2004)

This is a pack consisting of booklets and a CD-ROM on bullying, advocacy, rights,
self-advocacy and money. Hard copies of the pack are no longer available, but you
can access it through Inclusion Ireland‟s easy-to-read website, at
www.inclusionireland.ie/easytoread/myvoice/index.html. - Free
Who Decides & How? People with Intellectual Disabilities - Legal Capacity &
Decision Making (2003)
A discussion document on people with an intellectual disability and legal capacity and
decision making issues. - €10
Appendix B - Policies and Procedures as approved by
Board of Inclusion Ireland 2009
Sick Leave/Pay Policy

Annual Leave Policy
Maternity Leave Policy
Anti-Bullying & Harassment Policy
Force Majeure Leave
Disciplinary Policy & Procedure
Record Sheet – Disciplinary Policy
Grievance Policy & Procedure
Equal Opportunities Policy
Positive Behaviour Management
2009 IT Policy & Operating Procedures

Freedom of Information Policy
Data Protection Policy

Compassionate Leave Policy & Procedure
Parental Leave Policy & Procedure
Paternity Leave Policy & Procedure
Notification of intention to take Paternity Leave (Form)
Inclusion Ireland Policy on individual training requests/study leave
Inclusion Ireland Safety Statement

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Appendix C – Inclusion Ireland Organisational Chart
2009

Appendix D – Board of Directors
William Shorten – Chairperson
Frieda Finlay – Vice-Chairperson
Yvonne Bohane
Jerry Buttimer
Johanna Cooney
Kevin Doyle
Finula Garrahy
Anne Gunning
Tom Healy
2009 Rosaleen Hyland
Patrick Kiernan
Ursula King
Patricia Lee
Máirín McCartney
Katherine O’Leary
Dr. Sinéad Ó’Nualláin
Dan Rogan
Sean Ryan
Jean Spain
Marie Wolfe

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Appendix E – Sub-committees of Board
NAME OF COMMITTEE MEMBERS OF COMMITTEE

Finance Máirín McCartney (Chair) Eamon Slevin
Bill Shorten Stephen Kealy
Frieda Finlay Ursula King
Strategic Plan Bill Shorten (Chair) Jerry Buttimer
Implementation Katherine O‟Leary Eamon Slevin
Tom Healy Jean Spain
Patricia Lee Frieda Finlay
Membership AGM & Awards Frieda Finlay (Chair) Anne Gunning
Finula Garrahy Ursula King
Rosaleen Hyland Dan Rogan
Bill Shorten
Parents Finula Garrahy (Chair) Maeve Harrington
Kevin Doyle Frieda Finlay
2009
Ann Donovan Rosaleen Hyland

Education Bill Shorten (Chair) Jackie Cunniffe
Patrick Kiernan Katherine O‟Leary
Anne Gunning Anne Fay
Legislation Máirín McCartney (Chair) Jean Spain
Sinead Ó Nualláin Johanna Cooney
Tom Healy Yvonne Bohane
Advocacy Jerry Buttimer (Chair) Sean Ryan
Yvonne Bohane Marie Wolfe
Jean Spain Paul Duff
Damien Nolan Patricia Green
Tom Murphy
Trustees (Trustee Scheme) Máirin McCartney Jean Spain
Mary Boyd Ursula King
Noirin Buckley Fionnuala Ward
Maura Cregan
Appendix F – Staff
Deirdre Carroll CEO
Paul Alford Administrative Assistant Part-time
Deirdre Bonar Advocacy Officer Part-time
Fiona Duignan Policy and Projects Manager
Edel Gilchrist Accounts & HR Admin Part-time
Karen Horan Receptionist & Administrative Officer Part-time
Siobhán Kane Communications & Information Manager
Liza Kelly Advocacy Officer Part-time
Sarah Lennon Training and Development Officer
Áine Ní Aileagáin Advocacy Officer

2009
Gerald McCann Advocacy & Education Officer
Celine O’Brien Receptionist & Administrative Officer Part-time
Anne Tolan Administrative Assistant Part-time
Anne Waldek Administrative Officer
Jim Winters Advocacy and Human Rights Officer

72 ANNUAL REPORT
Inclusion 2009
Ireland Annual Report 2009
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Appendix G – Opinion Pieces in National Newspapers

I. Irish Times – March 30th 2009
Cutbacks in education for intellectually disabled people mean many will end up in a
variety of State institutions in later life costing the State more than was saved initially,
writes Deirdre Carroll.
Parents of people with an intellectual disability this weekend gave the Government a
powerful message – we cannot take any further cuts. On Friday and Saturday,
delegates gathered for Inclusion Ireland‟s 2009 agm in Monaghan. This time last year
300 delegates to agm 2008 gave a very warm welcome to then taoiseach-elect Brian
Cowen in his home town of Tullamore where he promised to do his best for people
with an intellectual disability.
Less than a year later delegates to the AGM in Monaghan are now facing an
uncertain future, fearful of the impact of the forthcoming budget on their children‟s
services. To paraphrase the old song “What a Difference a Year Makes”.
Parents are not only fearful that promised new services will never materialise, but
2009
that their existing services will be cut. Already we have had Minister for Education

Batt O‟Keeffe targeting children with a mild learning disability in special schools by
shutting down their classes. His unashamed defence of this move on the grounds
that it fits in with Government policy of educating all children together has been
rebutted by both parents and teachers alike.
In the week that this decision was made, the then chief executive of the Bank of
Ireland Brian Goggin, was asked for his view on this plan to save €7 million of
exchequer funding in light of the €7 billion given to shore up the banks.
Goggin had the audacity to state that one was an ongoing revenue cost to
government and the other was a loan that will be paid back. There will be no savings
in such cuts. Our experience is that many children with mild intellectual disabilities,
denied the educational supports they need, end up unemployed, in prison or in an
underfunded, understaffed psychiatric hospital.
Equally disturbing is the failure of the Government to publish the National Cares
Strategy. This is a kick in the teeth to the thousands of unpaid carers in this country
and their undocumented contribution to the Gross Domestic Product. There are also
real fears that the carer‟s allowance and respite care grant will be cut in the budget.

On Saturday, delegates at Inclusion Ireland‟s AGM heard from Niall Byrne, deputy
social services inspector at the Health Information Quality Authority (HIQA) about its
plans to introduce National Standards for Residential Services for People with
Disabilities. Yet, earlier in the morning, the Minister for State at the Department of
Health and Children, John Moloney, said there was no money to introduce these
standards either in 2009 or 2010.
The failure to protect a very vulnerable group of people is yet again put down to cost.
If we have learned anything over the last year, surely it is the need for independent
regulation and inspection, be it for the banks or the health services. The irony is that
just a few miles across the Border from Monaghan in Northern Ireland, regulation and
inspection has been up and running for years. Even accepting some delay in
implementing standards for adults, could we at least change the regulations under
the Child Care Acts to allow for inspection of homes which cater for children with
disabilities? A small cost for child protection to an Exchequer funding 20 junior
Ministers and numerous quangos.
2009 Mr Moloney is seeking savings by way of a value for money review of voluntary
disability bodies, as part of a larger value for money review of both voluntary and
HSE disability services. With disability services costing in the region €1.8 billion in
2007 (€2.3 billion if mental health services are included), there is no doubt that there
is room for savings, yet efficiency cuts alone will not be enough.
The current method of paying service providers a sum of money (on average
€80,000 per year) to provide one person with an intellectual disability a residential
place, is expensive and inflexible. The person and his or her family do not have much
say in how the money is spent, or have a choice of service provider. Perhaps more
importantly, the money is attached to the service, not the person, with the demands
of unions and staff taking precedence.
The Taoiseach is no stranger to the problems facing people with an intellectual

disability. As minister for health and children in 1998, he fought for, and won,
significant extra funding for services from his Cabinet colleagues, and in his home
county of Offaly he is respected as a genuine supporter of local disability groups.
Last year he promised delegates at Inclusion Ireland‟s agm, that he would do his best
for people with disabilities. Delegates at AGM 2009 want him to keep his promise,
and made it clear that rather than accept cutbacks, they will fight back.

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II. Irish Times - June 10th 2009
Institutional care does not belong to a different era, as the Ryan report stated, as
thousands of people with disabilities still live in such care, writes Deirdre Carroll.
Three weeks after the publication of the Commission to Inquire into Child Abuse
Report (Ryan report), there has been little public outcry about the horrendous abuse
of children with disabilities in institutions, nor has there been any mention that
children and adults with disabilities remain in uninspected, unregulated services, paid
for by the Irish taxpayer.
Unfortunately, institutional care does not belong to a different era, as stated in the
Ryan report, as thousands of people with a disability continue to live in institutional
care, some in what can be described as Dickensian conditions.
Media coverage of this issue was limited to Inclusion Ireland and Emily Logan,
Ombudsman for Children. Logan drew attention to the continuing failure of the
Government, the Department of Health and Children and the HSE to provide for
independent inspection of services where children with disabilities live.
2009
Inclusion Ireland has highlighted this failure since 2006. Figures published in 2005

showed that 374 children with disabilities were living in full-time residential care, with
a further 500 receiving what is called “residential support services”, ie respite care,
which may last for a few days a couple of times a year, or be a longer stay of weeks
or months if needed.
The Ryan report highlighted the fact that children with intellectual disabilities and
sensory impairments were especially vulnerable and were most at risk. Chapter 13 is
devoted to special needs schools and residential services, and refers to a period
from 1935 up to 1993. Fifty-eight witnesses gave evidence, and the majority (37)
reported abuses in day and residential schools and services for intellectually disabled
children. Chapter 5 deals specifically with a residential school for boys with special
needs run by the Brothers of Charity in Cork. The commission refers to disturbing
accounts of sexual abuse of vulnerable children by religious staff in this institution.
The witnesses who spoke to the commission stated many former co-residents would
not be able to give evidence, as they could not communicate independently.
In trying to explain why there has been little discussion of the abuse of disabled
children, it is important to know many of the children went on to adult services run by
the same religious organisations. Some witnesses sought reassurances from the
commission that they would not be punished or “get into trouble” for attending the
commission. As has already been stated, institutional care does not belong to a
different era where disability services are concerned. Over 10,000 people with
disabilities are currently receiving residential services. Many of these are living in
excellent community-based services run by religious and lay service providers, but
an estimated 4,000 are in places where there are more than 10 people living
together. Neither community-based residential services nor the large institutions are
subject to national objective standards or independent or unannounced inspection.
The Ryan report, in its recommendations, called for all services for children to be
subject to regular inspection in respect of all aspects of their care. This is not
happening for children or adults with disabilities today, one of Irish society‟s most
vulnerable groups.
The Government‟s response will be that the Health Information and Quality Authority
(HIQA) is advising on a set of national quality standards for services for children,
which will include residential centres for children with disabilities. At present, the
2009 authority can inspect residential settings for children who have been placed in the
care of the HSE by court orders. Children with disabilities are in receipt of services by
reason of their disability, not a court order. Devising standards will take at least two
years to complete, and if the experience of developing national standards for
services for adults is anything to go by, we shall be told at the end that there is no
money for implementation, and services will be asked to bring them in voluntarily.
The Ryan report has taught us that this is not good enough.
Prompt action is needed. The Department of Health and Children should, without
delay, prepare the necessary legislation to provide a legal basis for inspection and
registration of residential centres for children with disabilities. They have known
about this legal loophole since 2002. This could be done as an interim measure until
the new standards are up and running.
For the thousands of disabled adults in residential services, we already have agreed
national standards against which services can be measured. These standards were
launched by the authority on May 11th – a little over a week before the Ryan report
was published. In light of the horrors it described, these standards will be ignored at
the State‟s peril. It was said at the launch that it could cost up to €10 million to

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employ 50 inspectors. This money can, and should, be found. It should form part of
the Government‟s discussion with the Conference of Religious of Ireland.
Let us not fail children with disabilities in services today in the same way as we failed
those who gave testimony to the commission. Let us also not forget that many of
those mentioned in the Ryan report are now adults living out their days in
unregulated services paid for by the Irish taxpayer.
III. Irish Examiner – September 4th 2009
A Government pledge for unannounced visits to inspect residential services for

people with an intellectual disability must be implemented, writes Deirdre Carroll.
A few weeks ago I was contacted by family members about their brother who is now
in his sixties. He has a moderate level of intellectual disability and has episodes of
violent and disturbed behaviour, which have made it very difficult for his family to find
him a suitable place in a disability service.
He also has been the victim of sexual assault by another service user in the past but
the family were told nothing could be done about it. After many years of living in
2009
unsuitable and inappropriate services, including episodes in psychiatric hospitals, he

finally found somewhere to live which both he and his family liked.
He has lived there for a number of years but recently due to a new outburst of violent
behaviour was moved to another unit where his lifestyle is more restricted. His family
first contacted me twelve years ago when similar problems had occurred. I was
interested to know what had happened in the intervening years. It emerged that
some years ago this man told his family about incidents of appalling sexual and
physical abuse he had experienced as a young boy at a residential school for boys
with disabilities.
As a young boy he had been assessed with a mild level of intellectual disability and
was falling behind in his local school. His parents were advised it was in his best
interest to send him to a special residential school. He left school aged 16 sixteen,
illiterate with a moderate level of disability, disturbed and with violent behaviour and a
hatred of authority. His family never knew of the reason for such behaviour until his
disclosures a few years ago. His loving parents died not understanding why their son
acted in such a frightening way, but worst of all he has been condemned to living a
half life of great torment through no fault of his own.

The Ryan Report identified children with a learning disability and sensory
impairments as especially vulnerable and most at risk. A separate chapter in the
report is devoted to a residential school for boys with special needs run by the
Brothers of Charity in Lota, Cork where young boys with mild to moderate intellectual
disability were subjected to the most horrific acts of sexual abuse. The Ryan Report
made twenty recommendations.
Shortly after its publication the Government issued a statement making it very clear
that it accepted each recommendation and was committed to their implementation.
Minister Barry Andrews was asked to draw up an implementation plan for
Government. Individuals, victim support groups and agencies involved with children,
including Inclusion Ireland, were invited to make submissions to the Office of
Children and Youth Affairs. It is a credit to the work of his Office that the plan was
launched at a press conference on the 22nd of July.
There was a general welcome for the plan and for the Minister‟s press release in
which he committed the Government to giving the highest priority to the care of
children. While accepting the genuine commitment of Mr. Andrews, Inclusion Ireland
2009 is concerned about the lack of urgency surrounding the implementation of one of the
key recommendations of the Ryan Report: the need for independent and
unannounced inspection of children‟s residential services. There is a noted absence

of such inspections of services for children with disabilities.
The implementation plan states that there are approximately 150 centres offering
residential care or respite care to children with disabilities and notes that these
children are not in the care of the State although they are cared for by the State - a
legal nicety which has prevented them from being inspected under the Child Care Act
of 1991. At present, privately run residential services for children without disabilities
are inspected by the HSE, and the Social Services Inspectorate (SSI) of the Health
Information and Quality Authority (HIQA) inspects HSE run residential centres. The
Health Act 2007, when finally enacted will give the SSI the statutory powers to
undertake all inspections.
The action to be taken around inspection of services for children with disabilities
described in the implementation plan, states that the Health Act 2007 will be
commenced to allow for the independent registration and inspection of all residential
centres and respite services for children with a disability by December 2010. This
means that for another sixteen months at a minimum, children in these services will

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continue to lack the protection of visits by experienced inspectors. Furthermore there
is no guarantee that in December 2010 such inspections will commence.
The new standards for residential disability services for thousands of adults with
intellectual and physical disabilities, which was launched in May, have been put on
the long finger as the Department of Health says there is no money to implement
them in the foreseeable future. This is despite the overwhelming evidence pointing to
the need for inspection against approved standards. Surely some sense of urgency
around independent inspection of residential services for children with disabilities is
not too much to expect from Minister Andrews? The Minister should have instructed
the HSE and the SSI to commence immediately inspections of centres where
children with disabilities live while awaiting the full enactment of the 2007 Health Act
in December 2010. Such action would have sent out the right message that the
Minister and Government is serious about this plan.
Minister Andrews says there will be no peace for the survivors of abuse unless we
live up to the ambitions set out in the recommendations of the Ryan Report. The man
described above is not a survivor of abuse, as his brother correctly reminded me, he
2009
is still a victim. The State failed to protect him as a vulnerable child and continues to

fail him as a vulnerable adult. It is time for Minster Andrews and his fellow Health
Ministers Mary Harney and John Moloney, to lead the way by injecting a sense of
urgency around the implementation of independent inspection of children‟s and adult
services.
2009

INCLUSION IRELAND
National Association for People with an Intellectual Disability
Unit C2, The Steelworks,

Foley Street, Dublin 1
Tel: 01 855 9891
Fax: 01 855 9904
Email: info@inclusionireland.ie
Website: www.inclusionireland.ie

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INCLUSION IRELAND ANNUAL REPORT

INCLUSION IRELAND ANNUAL REPORT 2009

INCLUSION IRELAND ANNUAL REPORT 2009

From the Chairperson

In 2008, I was honoured by the Board of

INCLUSION IRELAND ANNUAL REPORT

INCLUSION IRELAND ANNUAL REPORT 2009

Inclusion Ireland is a unique organisation and draws on the work and

INCLUSION IRELAND ANNUAL REPORT 2009

From the Chief Executive Officer

I am very pleased to present this „new look‟

INCLUSION IRELAND ANNUAL REPORT

INCLUSION IRELAND ANNUAL REPORT 2009

INCLUSION IRELAND ANNUAL REPORT 2009

INCLUSION IRELAND ANNUAL REPORT

INCLUSION IRELAND ANNUAL REPORT 2009

INCLUSION IRELAND ANNUAL REPORT 2009

INCLUSION IRELAND ANNUAL REPORT

Disability Act 2005;

2. Disability Act 2005: Assessment of Need

and a half years. By the end of November 2009, approximately 6,100

Page 02 INCLUSION IRELAND ANNUAL REPORT 2009

Deirdre Carroll is a member of the HSE National Steering Group on the

INCLUSION IRELAND ANNUAL REPORT

Department of Health and Children;

Each Government Department with a Sectoral plan has consultative

3 Inclusion Ireland Annual Report 2009

INCLUSION IRELAND ANNUAL REPORT 2009 Page 03

Department of Health and Children – Deirdre Carroll, CEO;

4. Education for Persons with Special Educational

4 Inclusion Ireland Annual Report 2009

who do not have such needs”3. However, according to substantiating clauses,

INCLUSION IRELAND ANNUAL REPORT

“Individual Education Plans allow for appropriate, focused education

“Placing children who had been in special classes into mainstream

Education and McCarthy Report

published. Several of the recommendations of the Report relate to provisions

Inclusion Ireland believes suspension of recruitment to NEPS will have a

6 Inclusion Ireland Annual Report 2009

Clarification is needed on the future role of the NCSE following the

INCLUSION IRELAND ANNUAL REPORT

Inclusion Ireland expressed serious concern over the lack of an independent

scheme will end in 2010.

6. New Capacity Legislation

Page 08 INCLUSION IRELAND

In November 2007 Inclusion Ireland hosted a seminar on capacity in Athlone,

INCLUSION IRELAND ANNUAL REPORT

Inclusion Ireland Board Member and practicing solicitor Máirín McCartney

In February 2009 Inclusion Ireland CEO Deirdre Carroll spoke at a major

Michael Bach with Members of the Clare Inclusive Research Group in

7. Mental Health Act 2001 and A Vision for Change

Page 10 INCLUSION IRELAND

closure of all psychiatric hospitals, with resources from these closures

INCLUSION IRELAND ANNUAL REPORT

Inclusion Ireland is a member of the Mental Health Coalition and continues to

2009 Inclusion Ireland, will automatically be deemed as a charity. After much

engage in political advocacy that is directly related to advancing their

12 Inclusion Ireland Annual Report 2009

The provision of information on intellectual disability that is current and

INCLUSION IRELAND ANNUAL REPORT

2009 intellectual disability account for a small, but growing percentage.

education, health charges, personal finance, accessing services, social