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The goal of the project is to support professionals who communicate the news of a child’s disability to
families by providing them with evidence-based best practice guidelines and training. Positive parent-professional relationships are central to a family-centred approach to early intervention, and the
disclosure process can be seen as the very first opportunity for good practice in early intervention.
THE PROBLEM:
Negative messages prevail
Before the development of the “National Best
Practice Guidelines for Families of Children with
Disabilities,” there was no known comprehensive,
evidence-based best practice guidance available in
Ireland to support professionals in positive and appro-
priate family-centred disclosure practice.
Many families had told the National Federation of Vol-
untary Bodies that the news of their child’s disability
had been communicated to them in an insensitive,
inappropriate, or overly negative way that did not take
account of the individuality of their child or of the
child’s full potential.
Without evidence-based best practice to guide them,
many professionals have previously believed that
providing the worst-case scenario was the most
appropriate communication. The Informing Families
Steering Group directed the undertaking of a com-
prehensive consultation and research programme in
order to ensure that the guidelines would be informed
by wide-ranging consultation and partnership with all
key stakeholders and would be grounded in evi-
dence-based research.
THE DEVELOPED SOLUTION:
An appropriate, evidence-based
practice is established
The overall goal of the Informing Families Project is to
ensure that the communication process of informing
families that their child has a disability is undertaken
appropriately and sensitively, using a family-centred
model and in line with evidence-based best practice.
This initial disclosure is the first step in building a
family’s understanding of their child’s disability, and
thus it is central to how the family initially adjusts to
the information and to how they view disability itself.
The communication that takes place at the time of a
child’s diagnosis is also the first step in the building
of a trusting relationship between the family and the
professionals with whom they will interact. Positive
parent-professional relationships are central to a
family-centred approach to early intervention, and
therefore the disclosure process can be seen as
the very first opportunity for good practice in early
intervention.
THE MODEL:
Thorough testing led to an
adequate method
The project was developed at the National Federation
of Voluntary Bodies Providing Services to People with
Intellectual Disability (National Federation), which is
an umbrella group of intellectual disability service
ABOUT IRELAND:
After drastic spending cuts, getting
ready for an economic comeback
• The Republic of Ireland is a parliamentary
democracy with a written constitution. The
country has a population of approximately
6.3 million, including some 400,000 chil-
dren under five years.
• A period of rapid economic expansion from
1995 onwards that became known as the
Celtic Tiger period ended in 2008 with
an unprecedented financial crisis and an
economic depression in 2009. This has
led to steep cuts in Social Budgets: “Since
2008, there has been a steady erosion of
the kinds of flexible supports that facilitate
choice, autonomy, and independent living
for people with disabilities.” After drastic
spending cuts and with the help of the
European Union and the International Mon-
etary Fund, Ireland is once again showing
positive economic growth.
• The Human Development Index of 2015
shows that Ireland’s per capita gross na-
tional Product was $39,568, ranking it 6th
worldwide.