Chairperson’s Report
5th October 2013
The Special Needs Parents Association has past the three year mark since parents from across
Ireland who have children with a wide variety of special needs and disabilities bandied together to
form SNPA. There are three quotes made by parents in the past year which perfectly sum up why
the Special Needs Parents Association exists and needs to continue to grow to bring parents
together across the spectrum of special needs and disabilities in Ireland.
“As a parent it feels like unless your child has a label or fits into the right category then they are just
left there and forgotten about” MB Tipperary
“I am so glad I found your group as I didn’t’ know which way to turn or what to do. It’s all too mind
boggling at times when you’re trying to navigate the system not knowing what supports are out
there” RD Waterford
“We will never achieve anything for all of our children by fighting in our own corners. We have to do
it together to have more impact” AL Dublin
Since our last AGM, we have been very active in increasing the amount of input into Government
policy and legislation as a national cross disability parent led organisation. Those activities have
included an SNPA Presentation to the Fine Gael Parliamentary Committee on Education and Social
Protection, a Submission to Advisory Group on Tax & Social Welfare, Submission to Joint Oireachtas
Committee on Justice, Defence & Equality, Submission to Domiciliary Care Allowance Review Group
Department of Social Protection, Submission to NCSE in respect of Review of Special Education
Provision and a submission and presentation to the Joint Oireachtas Committee on Education &
Social Protection where representatives of SNPA were invited to give a parental perspective on the
special education system. We were also invited to the National Disability Authority Round Table
Discussions with Minister Lynch in May and more recently a joint seminar hosted by the National
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Disability Authority and NCSE on Transitions into and out of the Pre School Setting for Children with
Disabilities.
In addition to the formal submissions and presentations, SNPA have also attended two meetings on
members behalf with Minister for Education & Skills Ruairi Quinn, Director of NEPS Maureen
Costello, Special School Transport and Special Education Section of the Department of Education,
HSE Procurement Section and have also been involved in meetings with the HSE Disability Unit, HSE
Communications Unit & HSE Training and Development Unit.
A large part of SNPA’s activities involve peer support and providing parents with information. Since
our last AGM we have had Information stands at various events such as Rhett Syndrome Conference,
Angelman Syndrome Conference, VCFS 20th International Conference, World Autism Awareness Day
events, parent support group meetings, information meetings and coffee mornings around the
country all on a voluntary basis. We also delivered two information and awareness seminars for
parents and public at the Just4Kids Show in the RDS last May in collaboration with Angela Cummins,
parent and founder of TrainAbility.ie.
The volume of parent and professional queries we have dealt with given that we are a relatively new
and non-funded voluntary organisation is a fair reflection of the efforts and time given graciously by
committee members and Parent Liaisons who help to manage our social network and deal with
queries via phone, email, private messaging, Facebook and Twitter. This year we have dealt with just
fewer than 800 private queries from parents and countless more on our Facebook page and private
parent forum. We have also become an attractive source for researchers to find candidates for
surveys and qualitative interviews and have facilitated 17 research requests this year mainly from
social sciences, health professionals and every level of academia from Fetac Students through to
PhD.
On the 17th November last year, SNPA launched its’ new website designed by Grafton Media. We
wanted the website to have an approachable friendly look but at the same time be full of accurate
information that parents could tap into because information is empowering, but only as long as it is
factually correct. The website has since expanded to include all of the local parents support groups
we could find in Ireland, local sports & activities that are either inclusive or specifically for children
with special needs and summer camps. The feedback from parents is that it is really useful to have
so much information in the one space and professionals working with parents and children with
disabilities have expressed that they feel confident about directing parents to the website due to the
level and quality of the information provided. We hope that the website will continue to expand to
provide parents more practical information on raising a child with special needs and disabilities. I
would like to take the opportunity to say a special thank you to SNPA Assistant Secretary Claire
Hollywood, Allan Cuthbert Special Needs Financial Planner and to all who contributed content for
the website. We would welcome having more parents involved in developing the content on the
website further in the coming year.
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Welfare
Special Needs Parents Association have been involved since early last year in a DCA Working Group
which was set up by several disability organisations and The Carers Association to look at the
difficulties with the administration and policy of the DCA Scheme. As a result, three representatives
from the NGO’s DCA Working Group were invited to sit on the Department of Social Protection DCA
Steering Group along with representatives from the National Disability Authority, representatives
from government departments and DCA Warriors a parent led Facebook DCA campaign group. As
Chairperson of SNPA, I was one of the NGO representatives on the DCA Steering Group. The Group
issued a report last December with recommendations for Minister of Social Protection Joan Burton
to consider in relation to the policy and operations of the DCA Scheme. Since then, an
Implementation Group has been established in the Department of Social Protection to oversee the
roll out of recommended operational changes to the scheme and SNPA, as one of the representative
from the NGO’s DCA Working Group is part of the Department’s Implementation Group. Until such
time as the Implementation Group has completed its’ work, individual reviews of DCA recipients has
been suspended. Many thanks to all of the parents who volunteered their time to review and
feedback on draft application forms and information on the DCA Scheme as part of the
implementation process and a special thanks to parent and advocate Mary Dunne for her meticulous
work and efforts over the years to have this system overhauled.
One of the major decisions which affected families of children with disabilities and other carers was
the 19% reduction of €325 to the Respite Care Grant which was announced in Budget 2013. Despite
calls and demonstrations led out by The Carers Association, the Government held fast on the
decision on the basis that core social welfare payments had been protected. The impact on lower
and middle income families which relied on the annual payment to make up for the high cost of
having a child with disabilities, in conjunction with the major cuts to respite services which only a
minority of families have access to, cannot be overstated in times where the general cost of living
has increased and traditional supports from the voluntary and charitable sector have decreased.
Education
In relation to special education, SNPA were invited with other disability organisations to participate
in a NCSE consultation process last year examining two areas; Supporting Children with Special
Educational Needs in Schools and Development of a Code of Practice to guide educational
placement of children with special educational needs. The purpose of the consultation was to have
input into NCSE Policy Advice for Minister Quinn on the current Special Education system. The NCSE
Policy Advice Paper, ‘Supporting students with Special Educational Needs in Schools’ was published
last May. It has been twenty years since the special education system was thoroughly reviewed and
many of the recommendations reflect the input of parent and advocacy groups involved in the
consultation process held last year.
Some of the key recommendations included;

Commencing the Education for Person with Special Educational Needs Act 2004 as soon as
resources permit.
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
The adoption of a robust regulatory enrolment framework to ensure all children with special
educational needs can access a school placement

That teaching resources are allocated equitably to schools in line with their educational
profile of need without the need for a diagnosis of disability.

That a framework is developed to improve teachers’ knowledge and expertise in supporting
and educating students with special educational needs.

To ensure that additional supports drive improved educational outcomes through
individualised planning.

The provision of additional funding to special schools and special classes to allow them to
purchase and replace equipment.
At a meeting in June Minister Quinn re asserted the Government’s position that enacting all parts of
the Education for Person with Special Educational Needs Act 2004 (EPSEN Act) was beyond the
financial means of the Department at this time. SNPA will continue to call for the full
implementation of the EPSEN Act 2004 which would give a legal under-pinning to several of the
report’s recommendations, particularly with regards to monitoring educational out-comes by
ensuring all children have an Individualised Educational Plan and the rights to a timely assessment
regardless of age, as was intended under the Disability Act 2005 which itself has not been fully
enacted. On the same day in thirteen separate cities and towns across Ireland, parents, family
members, teachers and SNAs took to the streets in a show of solidarity against difficulties
experienced in the education system. Despite the U-turn in the decision to reduce Resource
Teaching hours by a further 10%, parents expressed disquiet over the outstanding 15% reduction to
Resource hours, changes to the administration of the July Provision Scheme in relation to qualifying
siblings sharing hours, shared access to SNA support becoming the norm, exclusions from school and
lack of appropriate placements in areas where waiting lists exist. The Minister and colleagues at the
time did wonder why the national demonstrations still went ahead and the answer was simple, the
figures did not represent the reality and parents wanted to be heard!
Lack of SNA support is a frequent complaint from parents. These parents do not want to see their
children grow dependent on SNA support as we know this can be counter-productive. At the same
time, parents do not want to see the rug pulled from under their children in the absence of other
supports coupled with larger class sizes. It is admirable and expected that most teachers strive to
differentiate the curriculum for our children, but the challenge to accomplish this is a class of 30 plus
pupils proves too much at times and children with special needs can be left floundering. Higher class
sizes will only compound this further.
Following on from the launch of the NCSE policy recommendations, Minister Quinn established a
working group to develop a proposal for a model for allocating teaching resources to mainstream
primary and post-primary schools that is reflective of recommendations in NCSE policy advice and
takes account of factors that identify the educational profiles of schools and the recording of
outcomes for students with special educational needs. SNPA attended a recent consultation with the
NCSE in the Department of Education to input into the work of the group and thank you to those
parents who contributed to the discussions in preparation for the meeting.
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In an environment where funding of special educational resources has remained stagnant at €1.3
billion despite the increases in demand and now an increase in class sizes, any such model must be
based on sound research, reflect and deliver on the basis of each child’s needs and not on the
resources available if we are to continue to adopt a policy of Inclusion. Inclusion not supported by
adequate and tailored supports to children with special educational needs is nothing more than an
aspiration on paper. The reality of pupils and the schools’ experiences on a day to day basis will be
what reflects the success of Inclusion. The current reality of children being excluded for parts of the
school day, total or prolonged exclusion from school and difficulties in finding appropriate school
placements is a poor reflection on the current policy of Inclusion and there are few systems in place
to support parents fighting for their child’s right to an education on par with their peers. Now more
than ever, it is evident that children with special needs and disabilities have very few rights and
parents have very few official mechanisms to address the circumstances outlined above. On the
other hand, there are excellent examples of Inclusive schools in Ireland and we must examine the
factors and skill mix that has led to their success.
On 5 April, it was announced that the National Council for Special Education would come under the
investigative remit of the Children’s Ombudsman. Up until this point in time, such complaints could
not be dealt with and had to be redirected to the NCSE itself. From the 30th of April 2013, any
complaints made by a child under the age of 18 years, or adult on their behalf, in relation to the
NCSE, can now be pursued by the Children’s Ombudsman. SNPA was invited to meet with the
Ombudsman for Children Emily Logan and staff to discuss the new remit and to ensure that parents
have the appropriate and accessible information on the service that the Ombudsman for Children
provides. To that end, SNPA and the Ombudsman for Children’s office produced two short videos
outlining the role of the Ombudsman and also the new remit. The videos are available to view on
our website www.specialneedsparents.ie and www.oco.ie and we would like to thank the
Ombudsman for Children for the invitation to collaborate on this project.
Health
Cut backs, cut backs, cut backs!
There isn’t a parent of a child with disabilities out there who hasn’t been impacted by some cutbacks
in health. Cutbacks to services, therapeutic interventions, respite, home help, home nursing support,
excessive waiting times for equipment such as wheelchairs, walkers and orthotics, loss of
discretionary medical cards, increases in the cost of the Drug Payment Scheme as well as changes to
the Long Term Illness Scheme for children with certain mental health difficulties. The statutory time
frame to complete the Assessment of Needs for children born after the 1st June 2002 has become
aspirational rather than a legal right set out in the Disability Act 2005.
Children are stuck in our paediatric hospitals months after being fit for discharge because Home Care
Packages are not in place, or grants for Housing Adaptations are no longer available due to a
reduction of 40% funding in some Local Authorities. The irony of this is of course overall the financial
implications of having a child in hospital, costs the State far more than caring for a child in a home
setting and often costs the parent far more as well.
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Once children reach the age of 18 and they still require some level of support due to an
intellectual/moderate to profound disability or Autism, then they fall from the responsibility of the
Department of Education to the HSE. Every year parents have to listen to the same rhetoric about
not having a specific budget set aside in advance to plan for the 700-800 annual school leavers with
disabilities who require on-going support. As one parent put it “They have known for the best part of
18 years that my child would require continuous care as an adult and yet they are unprepared to
budget and plan for it leaving us with a summer of uncertainty. My other children had options at 18,
their brother has none”.
In among all of the cuts is a massive program of reform in the health sector. One of these
programmes that will have particular implications for our children under the age of 18 is Progressing
Disability Services for Children and Young People. This is a national project established by the Health
Service Executive working with the non-statutory and voluntary organisations they fund and others
in the health, education and disability sectors, to change the way services are provided. This is based
on the recommendations of the Report of the National Reference Group on Multidisciplinary
Services for Children aged 5-18 Years produced by representatives of the professions and
management involved in delivering multi-disciplinary services to children.
In Ireland, disability services delivered by the HSE and non-statutory organisations have developed
independently over time. There is wide variation in the services available in different parts of the
country and for different categories of disability. As a consequence of this, some children and their
families have little or no access to services for example Doctor, Nurse, Occupational Therapist,
Speech and Language Therapist, Social Worker, Physiotherapist and Psychologist.
The project is being organised at national, regional and local level and includes representatives from
services (both health and education) and parents getting together to see how current services can
be re-organised to achieve this better structure at a local level.
The vision for the programme is
• One clear pathway to services for all children with disabilities according to need.
• Resources used to the greatest benefit for all children and families.
• Health and education working together to support children to achieve their potential.
The difficulties of turning this vision into reality, is evident to every parent. There are not enough
resources to meet the demands especially while the embargo on HSE staff remains in place and
posts where there is allocated funding remain unfilled. Is this programme a panacea to all of our
difficulties in getting therapeutic interventions for our children, NO! But it will ensure that children
who never had access to interventions because of their particular diagnosis or non-diagnosis will no
longer be left in the cold for not ticking the right box.
SNPA’s involvement has been primarily to empower parents to get involved in their local area with
the Implementation process to ensure that parents as stakeholders are represented at every level
and to ensure that parents involved are supported in that process and build up a network of parents
behind them. SNPA has been involved in PDS parent information meetings right across the Dublin
Mid Leinster HSE Area and Cork.
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SNPA were also involved in reviewing and redrafting the National Guidelines for Parent
Representation and we also delivered a training seminar to all Local and Regional Leads in each HSE
Area Implementation Group across Ireland on Parent Engagement and Representation. The purpose
of the seminar was to address the issues around effective parent representation, barriers to
representation such as tokenism and to deliver a toolkit for local areas to effectively build up a
communication strategy to keep parents informed of the proposed changes to service delivery and
build support and capacity around those parents involved as Parent Representative on Local
Implementation Groups and Sub Groups.
Working Collaboratively
A greater effort has gone into representative disability organisations working together more
collaboratively over the past eighteen months. SNPA, Inclusion Ireland, Irish Autism Action, Down
Syndrome Ireland and the National Parents & Siblings Alliance along with independent disability
advocates and self-advocacy groups such as Seasamh, united as founding members of the Disability
Rights Coalition Ireland. November 2012 saw the largest demonstration by people with disabilities
and their families who called on the Government for ‘Rights Not Charity’. Over 5000 people gathered
and marched or wheeled their way to Leinster House to show the Government a Red Card for its’
poor record in achieving promises to people with disabilities in the Programme for Government.
A wider collective of disability organisations met with Minister Quinn last June and there was
recognition that we have to start talking more and acting together to effect change.
A Way Forward
As a non-funded parent led voluntary organisation, SNPA is limited in its’ capacity to be involved in
major campaigns without the support of other organisations but we do have a strong social network
and links to parents on the ground which we must work to improve over the coming year and focus
more at a local level in bringing parents together across the disability divide with other
organisations. With health and education moving towards systems where diagnosis no longer
defines what a child receives by way of health and educational supports, we would hope that
parents start to change and come to the realisation that we too have been pigeonholed into
disability specific groups sometimes excluding parents who don’t tick the right boxes or any box and
then they too are left out in the cold searching for support from their own peers. As parents, we
shouldn’t reflect the box ticking systems that we seek to change.
The one thing that is striking when parents do come together regardless of their child’s disability or
diagnosis is the commonality of issues, emotions, hopes and fears that we all have and we must add
value to the experience and knowledge that we can share with other parents by networking locally
with other existing support groups, promoting the establishment of general special needs parents
support groups and building capacity in parents through providing information and support so that
they have the tools to advocate for their child.
We can only achieve this with your help as parents on the ground, in cities towns and villages across
Ireland. So we ask that you support SNPA by becoming more involved or simply by sharing
awareness that it exists with other parents. Encourage them to join the Association and to become a
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member of a bigger community where there are no divides but a strong union of parents of children
with special needs and disabilities.
As Chairperson, I would like to thank all of the parents who have volunteered their time, knowledge
and skills to support other parents so that we can ensure that the Association goes from strength to
strength. A special mention to the parents who have given their dedicated time to sitting on the
committee; Eoin Kelly, Claire Hollywood, Sue Sheehy, Patricia Houlihan, Marian Frawley, Eleanor
McSherry & Paul Dolan. We look forward to a new influx and parents and bid a brief farewell and
thank you to those who are stepping down this year. I would also like to mention and thank Mary
Dunne, Anne Lawlor & Lisa Domican for being such valuable sounding boards and fonts of
knowledge on a range of issues that have helped guide me through the systems that we seek to
change.
In conclusion, I would like to express my heartfelt appreciation for my husband Carl, our parents and
my own children who have supported me and enabled me to be in a position to serve members of
SNPA to the best of my abilities.
I would like to leave you with one thought,
“Parents are not just the father or mother of a child. Overtime, they may have become carer,
therapist, nurse, advocate, secretary, teacher, accountant, counsellor & expert in their child’s
condition…..
Behind the label of ‘Parent’ is a person oftentimes with a professional background & experiences that
should be valued by others and not disregarded simply because they are just….a parent”.
Lorraine Dempsey
Chairperson
Special Needs Parents Association
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