Domiciliary Care Allowance Review
Report of Review Group
December 2012
Final Report
Date: 21 December 2012
DCA Review Group Report – Final – 21 December 2012 - confidential
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TABLE OF CONTENTS
PAGE
EXECUTIVE SUMMARY
4
MAIN REPORT
1. Introduction
1.1.
1.2.
1.3.
1.4.
1.5.
Overview of DCA scheme
Rationale for scheme review
Review arrangements
Terms of reference for review
Work programme of Review group
2. Background/context of DCA scheme
2.1.
2.2.
2.3.
2.4.
History of DCA scheme
Policy objectives and Legal Provision
Progression in numbers, cost, etc.
Purpose of DCA scheme (including group discussion)
3. Consultation and submissions received
3.1.
3.2.
3.3.
3.4.
Summary of submissions received
Main points from customer survey
Issues raised in consultation seminars
Summary of main issues emerging from consultation
4. Research
4.1.
4.2.
4.3.
4.4.
Research on allowances in other countries
Research on care assessment tools
Other research data (GUI, etc.)
Recommendations from research
5. Main Issues and Considerations
5.1.
5.2
5.3.
5.4.
5.5.
5.6.
5.7.
5.8.
5.9.
5.10.
Defining levels of care
Terminology
Payment options and rates
The application process
The Medical Assessment process
Care Assessment tools
Review of Medical Guidelines
Reviews
Appeals
Communications
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10
10
11
12
13
14
14
15
18
19
22
22
25
26
29
30
30
33
36
37
39
40
40
43
45
46
48
49
52
54
55
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5.11. Linkages across schemes
5.12. Age limits for receipt of DCA
5.13. Implementation and Monitoring
6. Conclusions
6.1.
6.2.
6.3.
6.4.
6.5.
Purpose of the domiciliary care allowance scheme
Recommendations for immediate implementation
Policy recommendations
Issues for further investigation/work
Final Conclusion
56
58
58
60
61
62
62
62
63
APPENDICES
64
I
II
III
IV
Members of Review Group
List of key reference documents (available separately)
Department of Health Circular 1973
The DCA application process
64
65
66
70
Numbers receiving Domiciliary Care Allowance in selected years
Supports for children with disabilities
% of children covered and costs as % of GDP
SIS for Children scoring scheme
Example: Summary of extra monthly care needed
Profile of Carer’s providing care
Percentages paid at Low/Med/High (tiered) rates in other countries
19
31
32
35
36
37
43
TABLES
Table 1:
Table 2:
Table 3:
Table 4:
Table 5:
Table 6:
Table 7:
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EXECUTIVE SUMMARY
This report, which the review group has submitted to the Minister for Social Protection,
outlines the process, research and consultation undertaken, along with recommendations from
the review of the Domiciliary Care Allowance (DCA) scheme. The group was set up in June
2012 by the Minister to undertake the review. Terms of reference were set out and the group
was given a mandate to report to the Minister with recommendations by end December 2012.
Overview of report
Chapter 1 sets out an overview of the introduction of the scheme and the rationale for the
current scheme review. The terms of reference, the arrangements for the review and the work
programme of the review group are outlined.
Chapter 2 sets out the policy rationale that led to the introduction of the scheme in 1973.
Background information on the legal basis of the scheme is provided. The review group
considered the purpose of the scheme, with the discussions informed by the background
documentation relating to the original policy objectives of the scheme.
Chapter 3 provides feedback from the extensive consultation process undertaken as part of the
review to enable everyone with a view to contribute and participate in the scheme review.
A detailed report on the output from the consultation is published separately. The consultation
was undertaken in three phases:
Firstly, advertisements were placed in national papers seeking submissions from
interested groups or individuals. At the same time the Department of Social Protection
(DSP) wrote to all parents/guardians of children who are in receipt of the DCA,
informing them of the review process and inviting them to make submissions outlining
their views, thoughts, etc. on the scheme.
Secondly, a survey was undertaken, with questionnaires issued to 1,000
parents/guardians chosen at random.
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Thirdly, having analysed the submissions and survey data two consultation sessions
facilitated by National Disability Authority (NDA) personnel were organised, one with
parents/guardians and the second with advocacy groups and professionals working in
the area to validate and further consult on the issues emerging.
Chapter 4 provides detail on research commissioned and undertaken to inform the review
process. The work group commissioned research on similar schemes and service provision in
six other countries (the full report on this research is published separately). It includes research
by the NDA on the suitability of care assessment tools in assisting with the decision making
process. The chapter concludes by discussing the availability of other data that could inform
further research in the area of disability and the resultant additional care needs of children.
Chapter 5 sets out the main issues considered by the review group. Drawing on the evidence
and submissions the main issues requiring attention are considered along with the options
available to address them. The first issue to be determined is how to describe the level of care
required in order for a child to qualify for domiciliary care allowance. While the meaning of
words and terminology used has implications for parents/guardians and their understanding of
the scheme, the group accepts that changing the words in use can have a fundamental impact
on the scheme and could un-intentionally lead to the development of a different scheme.
Considering this and with the aim to concentrate the available supports on the children in need
of this level of care the group has made a number of recommendations with a view to
improving the understanding and administration of the current scheme.
While the review group considered the introduction of tiered payment rates, the preferred
option is to retain the current single rate. In agreeing this, the review group is conscious that
this implies retaining the current level of care as a requirement in meeting the scheme
qualifying conditions. The remainder of this chapter sets out the process issues considered by
the review group along with recommendations to improve the process and to ensure
transparency in the administration of the scheme.
Chapter 6 summarises the recommendations of the review group commencing with its view on
the purpose of the scheme. Consideration was given to how the scheme could be developed to
best address the needs of parents/guardians caring for children with disability.
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Following in-depth consideration the review group’s consensus is that the ‘higher level of care’
should be retained as a requirement. In taking this decision the review group is aware that this
will mean that overall success rates on applications for the allowance will not be expected to
vary much from those currently experienced.
In order to ensure that the scheme meets its purpose, a number of recommendations are made
for immediate implementation that will improve transparency in the administration process.
A number of policy recommendations are included relating to linkages between the DCA and
other schemes and the appropriate age (18 is the group consensus) at which payment of the
allowance should finish. Issues have also been identified that require further work/research.
Linkages between service provision, particularly the ease of availability of reports for
parents/guardians and the payment of the allowance leads to a recommendation that further
work is undertaken by the Departments/Agencies involved.
In conclusion, the review group recognises the role of the DCA scheme and recommends that
the current scheme definition (level of care required to qualify) is retained in order to support
the families and children who require this level of care.
Recommendations
In considering the desired policy and process change, along with areas for future work and
research, the review group recommends that;
1.
The terminology in use to describe the level of care required to qualify for domiciliary
care allowance be retained.
2.
Definitions for the words ‘substantial’ and ‘severe’ as set out in the Medical Guidelines
form a good basis to assist parents/guardians in their understanding of the type and level
of additional care required to qualify.
3.
Definitions based on those used in the Medical Guidelines should be made available and
included in all information documents and on the web.
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4.
(a)
The retention of a single payment rate for the DCA scheme.
(b)
Acknowledges that this implies the retention of a higher level of care as a
requirement to qualify for the allowance and the implications of this when defining
the terminology used to describe the required care levels.
5.
(a)
The use of the new application form, designed as part of the review process.
(b)
A review of information guidelines to ensure that parents/guardians are aware of
the new application form and the benefit of providing succinct information on their
child’s care needs.
6.
(a)
The supplementary form to provide additional medical and care detail for children
with pervasive developmental disorders is made available for completion by the
relevant medical experts.
(b)
This form should be completed and submitted with claims for DCA where the child
has a pervasive developmental disorder.
(c)
The specific form should be made available through Citizens Information Centres
and other information providers and should also be available on the web.
(d)
Where the form is not submitted, the parent/guardian will be afforded an
opportunity to supply this evidence prior to an unfavourable opinion being formed.
7.
Additional information on opinions is provided by MAs (the newly designed form will
assist with this) and that any case which has been subject to a case conference and/or
consultation with other professionals should be noted accordingly.
8.
That further cross agency work is undertaken, led by the NDA to research the potential
use of care assessment tools, to determine their usefulness in an Irish context.
9.
(a)
That further research is undertaken in order to establish the suitability of such tools
in assisting the decision making process, in an Irish context.
(b)
Assuming a suitable tool is found, then a trial might be undertaken to determine the
similarity of outcomes when using real cases.
(c)
The desirability of implementing a care assessment tool will be informed by the
results obtained from testing the new medical forms.
10.
That minor changes are required to the medical guidelines and recommends that these are
made and that the revised guidelines are published promptly.
11.
That list A and B (which details the conditions that are more or less likely to qualify) are
removed from use and not referred to in any guidelines for use in the assessment process.
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12.
That the Centre for Disease Control (CDC) age of attainment data be used for attainment
comparison purposes on children aged 0 to 18.
13.
That as much information as possible is provided to parents/guardians along with, or as
part of the decision on their claim, including in the case of pervasive developmental
disorders the medical report completed by the MA.
14.
That the DSP explore the feasibility of putting in place a multi-disciplinary panel,
comprising professionals working in the area of children’s disability that can be
consulted by MA’s to support them in forming their opinions.
15.
(a)
A review policy is an appropriate and necessary part of the management of the
scheme.
(b)
Most claims will have review dates set for a three or five year interval but it is
acknowledged that it may be appropriate to review some claims in a shorter/longer
time frame.
(c)
Some claims will continue to be classified as ‘do not review’ due to the severity of
the child’s condition and its expected duration.
(d)
The improvements implemented in relation to notice of review dates and advance
notice of review should continue to operate.
(e)
Parents/guardians receive an additional communication from the Deciding Officer
(DO) to give them an opportunity to provide additional information before the
review decision is made (21 day notice) in cases where the DO is considering
terminating payment.
16.
(a)
The full reason for a revised decision on appeal, positive or negative, should be
provided to parents/guardians and deciding officers to allow for an understanding
of how the revised decision was arrived at as this information will inform the
decision process.
(b) The Social Welfare Appeals Office (SWAO) should be briefed on the changes
being introduced to the scheme administration.
(c)
The most helpful way of providing the required information on decisions may be in
the form of a template document.
17.
A redesign of communications on the DCA scheme to ensure that parents/guardians have
timely access to information, clarity on the process and full information on all decisions
made on their claims.
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(a). Clear definitions on the level of care required in order to qualify for DCA be
included in all information on the scheme.
(b). Decision letters should be reviewed to include as much information as possible on
the decision reason.
(c). Wording of communications should be reviewed with better use to be made of
empathetic language
(d). Use should be made of the DSP internet site to make all relevant information
available, including clear definitions on terminology in use.
18.
The link between DCA and CA should be removed, with the required legislative change
to be made to decouple the allowances. This will eliminate the automatic medical
exemption for CA for future DCA applicants.
19.
Legislation should provide that the withdrawal of DCA on review should not lead to the
immediate withdrawal of CA, with a recommendation that the CA continues in payment
for a maximum defined period (possibly 6 months), subject to continuing to fulfil all
other conditions.
20.
The payment of DCA continue to age 18 years and change the commencement age for
DA to 18 years, as this would be a positive development for children and their families
alike.
21.
(a) In the event of increasing the DCA age to 18, it is also recommended that
information on all available options should be communicated to the people
concerned at age 17, giving them sufficient time to prepare for transition from
DCA.
(b) Over time the range of training and activation measures available for people with
disability should be developed and targeted at this customer cohort.
22.
A process will be developed and put in place to monitor the implementation of the
recommendations from the report, with;
(a) An implementation plan to be developed following acceptance of the report by the
Minister and,
(b) A group to be convened with representatives from the main agencies and
representative groups some 3 months after the Minister approves the report to
receive an update on the implementation plan and progress made.
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Chapter 1: Introduction.
This chapter provides an overview of the introduction of the Domiciliary Care Allowance
(DCA) scheme and sets out the rationale for the current scheme review. It includes the terms
of reference for the review and detail on how the review has been undertaken.
1.1
Overview of the Domiciliary Care Allowance scheme
The DCA was first introduced by the Minister for Health in1973 by way of circular 24/73. The
payment was specifically designed to help parents/guardians of severely handicapped children
between 2 and 16 years of age who were being cared for at home. To qualify the child had to
have a severe disability requiring constant care and attention substantially in excess of that
needed by a child of the same age, which was likely to last for at least 12 months. The means
of the child, not the parents/guardians, was taken into consideration. In 2000 the scheme was
extended to include children under 2 years of age. The scheme transferred to the Department
of Social Protection in 2009.
1.2
Rational for scheme review
Since the transfer of the scheme to the DSP in 2009 concerns have been expressed by
parents/guardians and advocacy groups about a number of aspects of the application and
review process. These include a perception that the qualification criteria for the DCA payment
has changed, with a raising of the qualification bar, particularly in relation to those children on
the Autism Spectrum. The commencement of medical reviews of the first claims awarded
under DSP administration in late 2010 compounded the view amongst some parents/guardians
that ASD children in particular were being singled out for harsher treatment. Other areas of
concern included the amount of information provided in decision communications and delay in
the appeals process.
Statistical analysis shows that the percentage of applications approved is lower than under the
stewardship of the HSE. All applications, irrespective of the type of disability the child may
have, are treated in the same manner and that it is not the type of disability but the resultant
care needs that are considered when the application is being examined.
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Statistics on the success rate of ASD type cases compared to the overall claim load would
support the DSP position that all applications are considered on equal terms and in a consistent
manner, with children on the ASD spectrum no less likely to qualify than other children.
In order to address the concerns of parents/guardians, advocacy groups and public
representatives, a review of the DCA scheme was announced by the Minister for Social
Protection, Joan Burton T.D. in the Dáil on 8th May 2012 during a debate on a Private
Members Motion. An Aide Memoire setting out the rationale for the review was noted by the
Cabinet at its meeting on 26th June 2012.
1.3 Review arrangements
The text of the Aide Memoire on the agreed arrangements for the review of the Scheme is set
out below:
Terms of reference for the Review Group
The Group will be chaired by Ms. Sylda Langford, retired Director General in the former
Office of the Minister for Children. The Group will make recommendations to the Minister by
the end of 2012. The terms of reference are set out at Section 1.4 below.
Membership of the Group
The Group will include representatives from the Departments of Social Protection; Health;
Children & Youth Affairs and Public Expenditure, as well as the National Disability Authority.
It will also include three representatives from the NGO umbrella group representing the Carers
Association, Downs Syndrome Ireland, Irish Autism Action, Special Needs Parents
Association, Inclusion Ireland, the Midlands Regional Forum of People with Disabilities, and a
representative of the DCA Warriors group. A full list of members is set out at Appendix 1.
Consultation Process
As part of the review, a consultation process with parents/guardians and representative groups
will be undertaken to ensure that they have an opportunity to make their concerns known in
relation to the administration of the scheme.
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Work of the Review Group
The Group will (i) research best practice in other countries; (ii) have the Medical Guidelines
and the Report of the Expert Medical Group, which underpin the operation of the scheme,
reviewed by a suitably qualified medical expert, and (iii) liaise with the Advisory Group on
Tax and Social Welfare in relation to their review of DA /DCA issues (report expected in
September) and take on board any relevant findings from their work into the administrative
arrangements for the Scheme.
1.4. Terms of Reference for the Review
The following terms of reference were approved by the Minister for the review of the scheme:
1.
Examine and report on the policy objectives and legal provisions underpinning the DCA
scheme;
2.
Review the current administrative, medical assessment and appeals processes
underpinning the scheme, including an examination of the duration of review periods
for the scheme based on the medical condition of the children involved and taking
account of other priority demands on the medical resources of the Department;
3.
Review the Medical Guidelines and the Report of Expert Medical Group having regard
to the 3 years operational experience since they were introduced;
4.
Liaise with the Advisory Group on Tax and Social Welfare in the context of their
review of DA/DCA issues and incorporate any relevant findings into the administrative
arrangements for the DCA scheme;
5.
In light of the foregoing, consider whether any legislative changes are required in
relation to the scheme and whether the current administrative, medical assessment and
appeals processes need further refinement to meet the overall policy objectives of the
scheme; and
6.
Make recommendations to the Minister for Social Protection by end December 2012 on
the basis of these findings.
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1.5. Work programme of Review Group
The review group met on seven occasions over a five month period. The review group received
presentations from DSP officials covering the scheme background, the application process, the
medical assessment process, etc. Presentations were also made by the Social Welfare Appeals
Office (SWAO), the DCA working group, the DCA Warriors and the National Disability
Authority (NDA). The group considered policy papers from the national Disability Authority,
DCA Warriors and others.
In order to inform the process the review group, through the NDA, commissioned research on
similar schemes/payments in other countries and also formed sub groups to work on specific
aspects of the review including the redesign of forms.
The review group liaised with the Advisory Group on Tax and Social Welfare, but as their
report on the DCA/DA issues has not yet been published it has not been possible to include
reference to their recommendations in this report.
In summary, the review group has made a comprehensive study of the scheme, including the
policy rationale and the administrative arrangements underpinning the scheme in arriving at the
recommendations and conclusions contained in this report. Supporting research and policy
submissions will be published on the DSP website and will also be made available on the
website of the NDA.
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Chapter 2: Background/context of Domiciliary Care Allowance scheme
This chapter sets out the policy rationale that led to the introduction of the scheme in 1973.
Background information on the legal basis of the scheme and detail on the progression of the
scheme over time is provided. The review group considered the purpose of the scheme,
drawing on submissions and the current understanding of the role the scheme plays in
supporting families and children. These discussions were informed and underpinned by the
background documentation relating to the original policy objectives of the scheme.
2.1. History of Domiciliary Care Allowance scheme
DCA was introduced in 1973, on an administrative basis and was operated by the Health
Boards. The allowance was established as ‘a recognition of the extra care and attention that
was being provided by the parents at home for a child with a severe disability’.1 The rules of
the scheme were set out in a circular from the Department of Health 24/73, attached at
Appendix 2. This circular stated that children ‘who have a severe disability requiring
continual or continuous care and attention which is substantially in excess of that normally
required by a child of the same age may qualify for DCA’. The allowance continued to be
administered on an area basis following the replacement of the Health Boards by the HSE in
2005.
In February 2006, the Government decided to transfer the administration of a number of
income support payments, including DCA, from the HSE to DSP, to improve efficiency and
effectiveness by having all similar income support payments administered by the one
Department/Agency. Responsibility was transferred from the HSE to the DSP in April 2009
under the Social Welfare and Pensions Act 2008. The Act also established the DCA scheme on
a legislative basis for the first time, using wording almost exactly the same as that used when
the DCA scheme was administered by the HSE: ‘the child has a severe disability requiring
continual or continuous care and attention substantially in excess of the care and attention
normally required by a child of the same age’. The transfer took place in two stages: from
April 2009 new claims have been processed by the DSP and from September
2009 all claims previously paid by the HSE became the responsibility of the DSP.
1
rd
Written Answers-Social Welfare Code PQ 22409/12, Dail Eireann 3 May 2012.
http://debates.oireachtas.ie/dail/2012/05/03/00119.asp
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An Expert Medical Group was established in advance of the transfer to the DSP to agree a set
of national, consistent and objective guidelines for use in determining eligibility of children for
the scheme (no such guidelines existed in the HSE). The Group recommended that
assessments of medical eligibility should be made on the basis of assessing evidence submitted
by the parent/guardian, rather than by way of individual examination by the DSP’s Medical
Assessors, as they are not involved in advising or treating the child.
2.2. Original Policy Objectives and Legal Provision
Commission of Inquiry on Mental Handicap
The first reference to the need to provide some support to parents caring for children with
disabilities was in the report of the Commission of Inquiry on Mental Handicap (1965). The
report of the Commission stated “some families need financial assistance to cover the cost of
special food, medicines, of appliances required, the cost of excessive damage to bedding, etc.
We recommend that health authorities should provide such assistance for families who suffer
hardship in providing what is required from their own resources.”
Budget Speech 22nd May 1973- Introduction of DCA
The recommendation of the Commission was acted on by Government in the 1973 Budget
when the then Tánaiste and Minister for Health, Mr. Brendan Corish announced the
introduction of the DCA scheme when making the following statement:
“I propose also to devote a sum of £450,000 this year for care allowance. Those who are
interested in this aspect of welfare will be pleased to know that we are providing money for
care allowance. This is specifically designed to help parents of severely handicapped
children under 16 years of age. Very often these have to be cared for at home at
considerable expense to the parents. It is my desire to help them and the children by
making allowances to the parents. This, too, will operate without a means test. … This
suggestion of an allowance in the case of severely handicapped children under 16 was
recommended by the Council on Mental Handicap.”
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Legal Basis
The scheme was operated under section 61 of the Health Act 1970 which states, inter alia;
61.—(1) A health board may make arrangements to assist in the maintenance at home of
—
(a) a sick or infirm person or a dependant of such a person,
(c) a person who, but for the provision of a service for him under this section, would
require to be maintained otherwise than at home, either (as the chief executive officer
of the board may determine in each case) without charge or at such charge as he
considers appropriate.
Circular No. 24/73 Allowances for Domiciliary Care of Severely Handicapped Children
This circular was issued by the Department of Health in September 1973 to give effect to the
budget announcement as outlined above. Its main provisions were:
Purpose
To alleviate, in some measure, the additional burdens created by the retention of such
children in the home.
Target group
Children aged 2-16, living at home, whose mental or physical handicap is so severe that
they require from another person constant care or supervision, i.e. continual or
continuous care or supervision substantially greater than that which would normally be
required by a child of the same age and sex. The term severely mentally handicapped was
used in a general sense and did not exclude those with moderate or mild mental handicap.
Eligibility Criteria

Children aged 2-16;

Living at home (allowance for short time away for treatment or holidays);

Require constant care or supervision due to the presence of a mental handicap;

Handicap must be present at the time of application for at least six months and be
likely to continue for at least a year;

Subject to means test of the child’s means;
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
Provision for supporting medical evidence to be requested or an examination carried
out. Circular stressed that if prior evidence existed/was available to the health board
the allowance could be paid on this basis;
 Provision for review of eligibility. Circular also allowed for granting of the allowance
up to age 16 where a condition was permanent and amelioration of it was impossible;
and

Provision for reduced payments to second and other eligible children in the family.
Circular 8/78
This circular extended the scheme by providing for the payment of the full allowance for
second and other eligible children in the family from April 1st 1978.
Letter 13th May 1985
The purpose of the letter was to allow Health Boards continue payment to age 18 where the
child remained in full time education. (At that time the child may have qualified for DPMA if
out of school, but not if they remained in school). This was reversed by letter of 17th April
2002 on the basis that Disability Allowance, which replaced DPMA, was payable to all eligible
children aged between 16 and 18, including those in full time education.
Letter 8th December 1999
The letter extended eligibility to children under 2 years of age with effect from 1 January 2000.
However the disability had to have been present for six months prior to application.
Changes announced in Budget 2000

The abolition of the requirement that the disability must have been present for six
months prior to the date of application. Therefore, children could become eligible and
receive payment from birth. (Applicable from April 1st 2001).

The introduction of a pro-rata payment in respect of periods spent at home (e.g.
weekends or holidays) by eligible children who normally resided in special schools or
institutions. (Applicable from April 1st 2001).
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Transfer of scheme to Department of Social Protection in 2009.
The scheme was transferred to the DSP in two stages, with the Department processing new
claims from 1 April. All existing claims in payment transferred in September 2009 along with
full responsible for all aspects of the scheme (policy and administrative).
Eligibility test
The fundamental test of eligibility from the outset of the scheme has been that:
 the child has a severe disability requiring continual or continuous care and attention
substantially in excess of the care and attention normally required by a child of the
same age; and
 the disability is such that the child is likely to require full-time care and attention for at
least 12 consecutive months.
2.3. Progression in numbers/cost etc.
The number of children and families supported by the DCA scheme has grown significantly
over the period from 1975 to date. Statistics on the number of families in payment are only
available from 2009. The number in payment has more than doubled since 2002 and has
quadrupled since the early 1980s. This growth cannot be explained by the modest changes in
eligibility conditions, or by the underlying changes in the size of the child population. 2 The
growth in numbers qualifying for the scheme indicates that the way in which qualifying criteria
has been interpreted has changed significantly over time.
Table 1 below sets out the numbers involved.
Cost of Domiciliary Care Allowance (DCA) and associated schemes
The DCA scheme cost €101m in 2011. However, the related spend on the Respite Care Grant
(RCG) is added (€45m), together with the means tested Carers Allowance (CA) (paid to 46%
of DCA recipients)3 amounting to some €113m and the Household Benefits package (€19m
2
Extension to children aged 0-2 would have been expected to add at most about 14% to the underlying
numbers eligible. The number of children aged 15 and under fell by 2002 to 79% of its 1981 level, and recovered
to 93% of that level by 2011.
3
The exact percentage in receipt of both DCA and CA has been established through a PPSN data match.
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estimated) needs to be taken into account in determining the total cost of supporting the
families and children involved.
It should be noted that in order to receive CA or Carers Benefit (CB) for a child aged under 16
years, DCA must be in payment.
Table 1: Numbers receiving Domiciliary Care Allowance in selected years
Families
Children
1975
3,771
1977
4,215
1981
5,705
1982
5,951
1984
6,365
1985
6,791
1986
7,102
1994
7.873
1995
8,125
1996
8,403
2000
10,570
2002
11,101
2003
14,233
2004
15,766
2009
Amended 22,945
24,786
2010
23,428
25,234
2011
24,176
25,966
Sources: Health Statistics; Statistical Information on Social welfare
2.4. Purpose of DCA scheme (including group discussion)
When the scheme was initially introduced by circular 24/73, the rationale was described as: “a
new scheme of allowances for severely physically or mentally handicapped children who are
living at home and who need constant care. The scheme is designed to alleviate, in some
measure, the additional burdens created by retention of such children in the home”.
DCA Review Group Report – Final – 21 December 2012 - confidential
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The circular went on to state that, “payment may be made in respect of children whose mental
or physical handicap is so severe that they require from another person constant care or
supervision, i.e. continual or continuous care or supervision substantially greater than that
which would normally be required by a child of the same age…”
While this definition has remained the basis for the payment of the allowance since, it is clear
from the exponential increase in the numbers paid over the last 40 years that the interpretation
of what constitutes severe and substantial has changed significantly over the years. While
demographic changes, along with changes in the age of children eligible, etc. account for some
of the increase they are not sufficient to explain the full increase in the numbers over time.
The payment is designated as a family benefit under EU regulations.
The following is a summary of the views expressed in the submissions received from the public
on the purpose of the scheme:

DCA recognises the extra care provided/contribution parents/guardians make in helping
their children reach their full potential

DCA is an essential payment to families where the expenditure to meet the needs of the
child far outstrips that required for a child without a disability/medical condition

DCA is NOT an income support such as CA, it is a family benefit, a universal payment
similar to Children’s Allowance

The scheme reflects the extra care given to a disabled child as opposed to another child
without a disability

DCA is used to cover a multitude of expenses/costs/special arrangements

It reflects the additional costs associated with the child’s disability.
The review group considered the purpose of the scheme, taking into consideration the policy
background and the views expressed through the public consultation process. It also looked at
how DCA compares to CA. The consensus of the review group is that DCA is different from
CA, with DCA recognising the extra demands associated with caring for a child with a
disability.
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The DSP view is that CA is an income support payment for looking after someone who needs
full-time care and attention. As such, it compensates the carer, in some way, for the limitation
of employment opportunity that comes with providing care to a child with a disability.
DSP specifies that in order to qualify for CA the person being cared for must need:

Continuous supervision and frequent help throughout the day with their personal needs,
such as walking and getting about, dressing, washing, eating and drinking, or

continuous supervision to avoid danger to themselves, and

full-time care and attention for at least 12 months.
The review group agreed that DCA is not a substitute for and should not be seen as a
replacement for appropriate services being provided for disabled children by the relevant
statutory bodies.
In summary, the review group accepts the rationale that DCA and CA are different, serving
different purposes. DCA recognises the extra demands associated with caring for a child with
a disability, while CA compensates parents/guardians for the limitation of employment
opportunity due to providing care for a child with a disability.
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Chapter 3: Consultation and submissions received
In order to assess the views of relevant interested parties the review group undertook an
extensive consultation process to facilitate everyone with a view to contribute and participate in
the scheme review. The consultation was undertaken in three phases;
Submissions
Advertisements were placed in national papers seeking submissions from interested groups or
individuals. At the same time the DSP wrote to all parents/guardians of children who are in
receipt of the domiciliary care allowance, informing them of the review process and inviting
them to make submissions outlining their views, thoughts, etc. on the scheme.
Survey
A survey was undertaken, with questionnaires issued to 1,000 parents/guardians chosen at
random. In preparation for this survey, DSP sought the advice of the NDA in relation to the
questions to be asked and also involved the Statistics unit of DSP to assist in selecting the
random sample to be surveyed. This ensured that the questions were targeted and that the
survey sample, while randomly chosen was representative of all customer groups.
Consultation sessions
Having analysed the submissions and survey data two consultation sessions were organised,
one with parents/guardians and the second with advocacy groups/professionals to validate the
data collected to date and further consult on the issues emerging. These consultation sessions
were facilitated by NDA personnel, with the second session held in the NDA premises.
A report on the output from the consultation will be published separately.
3.1. Summary of submissions received
Following advertisement and the issue of a letter to each DCA recipient a total of 323
submissions were received, 272 from individuals and 51 from groups/organisations. In
inviting submissions, a number of headings were suggested under which people were asked
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to comment. The following is a summary of the most common issues raised, set out under the
discussion headings used in the consultation process.
The objectives or purpose of this scheme
The main view expressed (196 submissions) was that the allowance reflects the additional costs
associated with the child’s disability. On a similar theme, 68 of the submissions stated that the
scheme should reflect the extra care given to a disabled child as opposed to another child
without a disability. 41 submissions stated that DCA is used to cover a multitude of expenses and
costs associated with the care needs of the child.
The application and assessment process
The main view expressed was that the application and review forms need to be redesigned in
their entirety and made more user friendly (13 submissions). The form is biased towards
physical disabilities and as such, is not fit for purpose, needing to incorporate non-physical
disabilities. 17 submissions were of the view that the application form and assessment process
needs to address social, socio-economic, behavioural, emotional, sensory and mental health
issues. Provision of clear guidance on the reports that should be submitted at claim and review
stage was also highlighted.
Views were expressed that eligibility should be assessed based on;

the level of extra care and costs (69 submissions)

the diagnosis and extra costs (55 submissions)
Submissions also noted that applications should be supported by reports from GP’s and
Consultants/specialists (132 submissions), with a further significant number saying they should
be supported by assessment from other experts/professionals (65 submissions). A number
believed a report from child’s school describing development and capabilities should be
accepted as evidence (45 submissions).
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How decisions are reached and communicated
The amount of detail provided on the reasons for disallowance was instanced in 76
submissions, with a suggestion that a checklist of what is passed and what is failed in the
individual assessment should be included. At present, parents/guardians are merely informed
that their child does not need any extra care and attention above that of a child without a
disability of the same age, in the Medical Assessor/Deciding Officer’s opinion (28
submissions). 49 submissions sought to have parents/guardians advised on the time required to
make a decision, while a further 23 suggested that more use be made of e-mail in
communication.
How individual cases are reviewed
There is an acceptance that there should be a review policy on the scheme with views on the
frequency of reviews ranging from every 3 to 5 years (24 submissions) to every year (19
submissions), with a further 20 stating that it should depend on the type of disability. A large
number of submissions stated that children suffering from certain types of disability should
never have their case reviewed (121 submissions).
Should the rate of payment reflect the level of disability/care need of the child?
According to 73 submissions, the rate of payment should reflect the care needs resulting from
the condition, with a further 28 saying that it should reflect the age of the child as the costs rise
with age. It should be noted that 71 submissions recommended that the same rate should be
paid to all recipients.
How the appeals process operates
Delays in the appeal process were highlighted as an issue, with 50 submissions saying the
process should take less than 8 weeks and a further 20 saying it should take less than 16 weeks.
The transparency of the appeal process was instanced in 33 submissions, with 21 saying that
details of the process should be published on the website.
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3.2. Main points from customer survey
Survey forms issued to 1,000 parents/guardians representing a randomly selected sample of
DCA recipients - 512 replies were received by the closing date. 65% of respondents had been
awarded DCA by the HSE. This accurately reflects the % of recipients currently in payment
who had their claim awarded prior to April 2009 when the scheme was administered by the
HSE. The average family size of those who responded was between 2 and 3 children. It
should be noted that 450 families of the 512 respondents are getting DCA for 1 child, 50 for 2
children, 9 for 3 and one family had 4 children in receipt of DCA.
The following is a summary of the information provided by the survey:
•
94% felt DCA should be paid to 18 years.
•
77% felt that all ages should get the same rate of payment.
•
71% expressed their satisfaction with current medical assessment. (73% of DSP
awarded customers were satisfied with medical assessment).
•
67% felt that the same rate of payment should be made, irrespective of the level of
disability or care need.
•
65% people said their support needs were fully or mainly met by service providers.
•
64% of children are getting regular services from service provider.
•
61% of children in mainstream education; 29% in “special education”.
•
Over 60% of respondents use the RCG for family holidays or day to day expenses.
•
55% of people pay for services privately.
•
55% of the survey respondents are in receipt of CA in addition to DCA.
(Overall, 46% of DCA recipients are also in receipt of CA).
•
50% thought the child should be seen by the MA as part of the application process.
•
60% use the RCG for family holidays/household expenses.
•
50% of people use respite care at some point each year.
•
On improving communications, 40% considered that more information on reasons for
disallowance should be given. More information on the process/appeals was an issue
for 37% and a quicker process overall was raised by 23%.
•
34% felt that delays are the biggest concern with appeals.
•
26% of households were lone parent households - double the national average.
•
20% of respondents had been through the appeals process, with 63% of them stating
that they were satisfied with the process.
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Further analysis of the survey data by the NDA indicates that parents/guardians of younger
children or a child with a speech/sight/hearing disability are more likely to get the required
services. Parents/guardians of school age children and those with conditions such as Down
syndrome, ID, or those who need help at home with learning or special exercises are less likely
to report that their service needs are fully met. These findings point to perceived difficulties in
other publicly-funded services such as learning support, or in specialist therapy input such as
speech and language or physiotherapy.
3.3. Issues raised in consultation seminars
To complement the consultation undertaken through the call for submissions and the customer
survey, the NDA facilitated two consultation sessions. One with parents/guardians which was
held in Sligo on 5th November 2012 and one with a group of disability organisations and
relevant support professions which was held in Dublin on 7th November 2012. The following
gives a brief summary of the feedback from these sessions:
3.3.1 Parent consultation seminar
Invitations were issued to 16 parents/guardians to which 9 attended. The meeting opened
with a presentation outlining the progress to date, the issues being considered and provided
an overview of the survey that issued to a sample group of DCA recipients. Those
attending were asked for their views and experience of the scheme particularly in relation
to the following areas; the application form and application process, the medical
assessment process, the appeals system and the communications issuing from the DSP.
The main points that arose from the discussion are set out under the discussion headings:
Impact of disability of the family
Parents/guardians gave account of the effect a child with disability can have on a family,
highlighting the amount of time required to care for their child with a disability and that
this leaves no time to look after other children or to go to work. DCA is not a substantial
amount of money, but it does help. The feeling was expressed that the DSP is trying to
save money by rejecting a high percentage of application.
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What is the allowance used for?
Views expressed ranged from meeting the additional cost of caring for the child to meeting
additional costs in other areas of life, or the cost of getting specialised babysitters. Paying
to go privately for services and the cost of travel to multiple appointments was also raised.
Application form and medical assessment process
The meeting heard that the current application form is difficult to complete, particularly
for people with lower levels of literacy. The form is orientated towards physical disability.
Parents/guardians have problems expressing the care required in writing and it was felt that
they should be told at an early stage of the benefits of keeping a “daily diary” on the care
required.
They wondered why MAs question Consultants reports and also felt that the MA should
contact Consultants directly for further information if necessary. They are not happy with
the decision letter, insufficient reasons for disallowance given and have an issue with the
time taken for oral appeal hearing (8 months according to one person).
An overview of the proposed revised DCA application form was given, while some minor
points were raised it was felt that this form would be a good help.
In a concluding point one person felt that they can be a victim of their success at a review.
If a child has improved due to the therapies provided but this results in DCA being
stopped, then the services that helped to improve their child will be no longer be
affordable.
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3.3.2. Consultation with disability organisations/support professionals.
A session was held in NDA headquarters Dublin on the 7th November 2012. A
representative sample of ten groups and representatives of organisations was invited, with
eight attending. The results of the parent/guardian survey were reported and a presentation
on the medical assessment process for DCA was given by one of the DSP’s Medical
Assessors.
Attendees reported that the allowance is spent on a wide range of things, from travel to
support groups, promoting the child’s social inclusion, meeting the costs associated with
the disability and paying HSE rates for babysitter for child with autism.
It was felt that numbers have increased as the scheme was previously focused
predominantly on physical not sensory disability and furthermore, more people are aware
of the scheme nowadays. The Cystic Fibrosis association reported that when they
undertake promotional activity they get more people inquiring about the domiciliary care
allowance, while Enable Ireland reported that parents/guardians don’t have cash supports
on their mind when they first get a diagnosis.
The consultation report includes the detail from the session, but the following is a brief
synopsis of the additional points made;

The aim should be to get the process right first time as this saves duplication of effort
with appeals.

The DSP should be more prescriptive on information being sought and provide
guidelines for multi-disciplinary teams about what information to give.

The proposed new application form was welcomed as an improvement.

Could DSP have a mix of doctors and multi-disciplinary professionals, with multidisciplinary professionals providing training for medical assessors

Medical Assessors should review cases together if they are in doubt.

The benefit of writing a daily diary and the belief that it leads to more success at appeal
was instanced along with a view that successful appeals often relate to wider social
circumstances.
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3.4
Summary of main issues raised in consultation
The consultation feedback confirms that the main issues are those that had been highlighted in
representations over the past year. These range from the purpose of the scheme and how the
rules relating to qualification are set out and made known, to specific issues relating to process.
Based on the feedback there is need to clarify the purpose of the scheme. There appears to be a
consensus that it differs from the CA and agreement that it is used to cover the additional cost
associated with caring for a child with additional care needs. Defining the scheme and
clarifying the qualifying conditions will be important in addressing the concerns.
The main process issues emerging include the following:

The application process

The medical assessment process

The review process and the frequency of reviews

Communications and the need to provide parents/guardians with as much
information as possible on the reason for refusal of the allowance

The appeals system, including issues relating to delays
Work undertaken by the review group to address these process issues, as reported in Chapter 5
should ensure that parents/guardians have clarity and an understanding of the process and
reasons for any action/decision on their individual claim.
While addressing these process issues, a number of other issues emerge that require attention.
Specifically, the review group looked at the linkages between DCA and the CA along with the
role played by the RCG, based on the feedback and parents/guardians understanding of the
purpose of the various payments. Aware that the Advisory Group on Tax and Social Welfare
would be reporting on the appropriate age at which the DCA should finish (currently it finishes
at age 16 with the child having the right to apply for Disability Allowance (DA) in their own
right) the review group also sought the views of parents/guardians and advocates on the issue.
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Chapter 4: Research
This chapter presents key findings from research commissioned and undertaken by the NDA to
inform the review process. This research focused on the following areas:

Research on similar schemes and service provision in six other countries

Research on effective care assessment tools to assist with the decision making process.

An examination of additional data sources that gave an accurate depiction of the actual
care needs of children with disabilities in Ireland.
4.1.
Research on other countries
The NDA commissioned Mel Cousins & Associates to research comparable payments made to
families with a disabled child in other countries and how these payments were structured. Six
countries at broadly equivalent levels of economic development which had payments
equivalent to DCA were selected for in depth examination, on the basis of providing a spread
of different approaches and welfare regimes. These were Belgium, Canada, France, Finland,
Netherlands and the UK.
Key findings

The rationale for the equivalent payment in the six countries was generally to cover the
additional costs associated with a disability.

The amount the schemes provided varied from €72 a month (the Netherlands) to €1,210
a month in France (which incorporates the equivalent of Carer’s benefit)

Two countries had flat-rate payments while four had tiered payments

In four of the six countries, the criteria for receipt were broadly similar to in Ireland
covering care needs significantly above the norm

Two countries used independent agencies to carry out assessments, and this involved
multi-disciplinary personnel. In most countries, assessment was on the basis of
submitted documentation. In just one country (Belgium) children were actually
examined to assess eligibility, but this is in the process of changing to a desk
assessment system.

The proportion of children covered ranged from 1% to 3.7%, with Ireland at 2.5%.

The UK and Ireland spent most on this scheme, when the level of payment is combined
with the proportion of children covered.
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
Two of the countries, Netherlands and France, have a system of personal budgets as
well as their DCA-type payment.

Ireland is slightly unusual in that entitlement to DCA entitles the family to receive other
benefits automatically
Details from the Schemes
Each of the countries has a scheme which provides support to families of a child with
disabilities which are broadly analogous to domiciliary care allowance. The descriptions and
main features of these schemes are summarised in Table 2 below.
Table 2: Supports for children with disabilities
Country
Belgium
Payment
Allocations
familiales majorées
pour l’enfant malade
ou atteint d’un
handicap
Canada
Child Disability
Benefit
Finland
Alle 16-vuotiaan
vammaistuki
France
Netherlands
United
Kingdom
Description
Supplementary allowance
for children with disabilities
under the age of 21, the
amount of which varies
according to the degree of
disability
CDB is a non-refundable tax
benefit for families who care
for a child under age 18
Disability allowance for
persons under the age of 16
Qualifying Conditions
(i) Physical or mental incapacity; (iii)
degree of activity and participation;
(iii) consequences for the family
(socio-medical scale)
Allocation
d'éducation de
l'enfant handicapé
(AEEH)
Education allowance for a
disabled child
Basic payment requires set % of
disability. Supplements payable
according to costs incurred and level of
care required
Care allowance
scheme for disabled
children living at
home (TOG scheme)
The TOG scheme provides
financial support for people
caring for disabled children
between the ages of 3 and 17
who live at home.
A physical or mental disability which
results in the child being substantially
more dependent on care, assistance and
supervision than a non-disabled child
of the same age.
Disability Living
Allowance
Payable to people, including
children over age 3 months
who have personal care
needs and over 3 years with
mobility needs as a result of
severe disability.
Child must require specified levels of
care and need more care than a nondisabled child of the same age
A severe and prolonged impairment in
mental or physical functions.
An illness or injury that creates a need
for care and rehabilitation that lasts at
least 6 months and imposes particular
strain and requires a greater
commitment than the care of nondisabled children of the same age
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Page 31
The objectives of the payments are to contribute to the additional costs of a child’s disability.
In general, however, the schemes are not very specific about their scope, i.e. as to which costs
are to be met nor as to the proportion of the costs which are to be taken into account. There
are, in practice, significant variations in the scope of the schemes.
There are also variations in the percentage of children (in the relevant age group) in receipt of
benefit in each country. This ranges from a low of about 1% in France and the Netherlands to
over 3.5% in Finland. While expenditure on these schemes is understandably very low (below
0.1%), table 3 below based on data from the most recent year available, gives an indication of
the level of resources expended.
Table 3: % of children covered and costs as % of GDP
% of children in receipt of
benefit
Costs of benefit as % of GDP
B
C
Fin
Fr
N
UK
Ire
1.6
[n/a]
3.7
1.2
1.0
2.9
2.5
0.046
0.017
0.038
0.040
0.004
0.088
0.063
Impact of the payments
Detailed studies of the impact of the payment have been located for the UK only. These studies
showed that parents/guardians spent DLA on needed equipment or activities and on treatment
and tuition (Corden et. al., 2010).
Interaction with other payments and services
The full report includes a short description of the national context and services provided for
children with disabilities in each country. However, there does not appear to have been any
detailed or quantitative studies of the countries concerned and it is difficult to obtain a detailed
picture of the level or quality of services in each country.
Relevance of international research to Ireland
The countries examined have all opted to establish some form of social security (or tax) benefit
to assist with the costs of disability. All the European countries have linked this to the need for
care which is, in general, defined somewhat similarly to the Irish approach, i.e. as involving a
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need for care, arising from a specific disability, which is greater than a non-disabled child of
the same age. However, the details of the various payments and their role in their national
support systems vary greatly. The national schemes have been affected both by the national
context and by historical developments. In terms of the overall design of the benefits, the
review of these six countries does not point to very specific lessons for Ireland other than that a
variety of approaches is possible.
Defining the need for care
One issue, in terms of definition, is whether – in the Irish context – a more specific definition
of the extra need for care is required. European countries adopt different approaches to this
issue. On the one hand, Finland assesses the need for additional care and the legislation refers
to ‘weekly’, ‘daily’ and ‘round the clock’ care. However, the law and guidelines do not define
these terms more precisely and the Finnish social security officials do not appear to consider
that more specific definition is required. In contrast, the Netherlands legislation establishes the
average number of care hours which a child needs per week and requires that a child must have
care needs totalling at least 10 hours per week. Therefore both approaches are possible.
4.2. Care assessment tools
The NDA identified and reviewed different assessment tools that have been developed
internationally for assessing the needs of children with disabilities and with autism. These care
assessment tools had been tested and found to be rigorous, valid and reliable.
Children with care needs are a diverse group as the level of disability can vary from a mild
speech difficulty to quadriplegia, and with it the level of dependency and the type and intensity
of education, social and other supports and services required. The relationship between level of
dependency and support and service needs are complex.
Most countries providing financial assistance in recognition of the additional care needs of
children with disabilities do not use standardised instruments. Instead, assessment processes
use information already available and evidence from health professionals and agencies
involved in approving financial assistance often employ medical staff to review decisions made
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In the absence of a widely accepted and standardised assessment tool for determining
additional or special care needs, a range of criteria are generally used. Most definitions of
additional care needs use at least use one and usually more of the following four components:

Functional limitations

Presence of a health condition

Need for health-related services; and

Minimum expected duration of health condition of 12 months.
Many countries are currently reviewing their systems and attempting to develop more objective
and suitable assessment tools.
Developing a reliable measurement tool
While there is no universally agreed tool for assessing the care and support needs of individuals
there is consensus about attributes that a standardised assessment tool should have, with
validity, reliability and rigour accepted as key components.
Examples of standardised instruments
The number of established standardised instruments to measure self-care or care dependency in
children is limited. They include the WeeFIM, the Vineland Adaptive Behavior Scales
(VABS), the Pediatric Evaluation of Disability Inventory (PEDI) and the Battelle
Developmental Inventory (BDI). The PEDI, BDI and VABS involve detailed and extensive
queries of self-care, mobility, communication and social items. On average, they require more
than 30 minutes of interview time and complex scoring4. Other standardised tools that are
worth examining include the Wisconsin Children’s Long-Term Supports Functional Screen
(CLTS FS) and the SIS for children.
Closer inspection of the Supports Intensity Scale (SIS) for Children
The Supports Intensity Scale (SIS) for Children provides a standardized procedure and a
reliable and valid means to measure the relative intensity of support needs of children with
4
Developmental Disabilities in Infancy and Childhood Vol I: Neurodevelopmental Diagnosis and Treatment.
Chapter 21: Functional Assessment in Neurodevelopmental Disabilities and Msall ME. (2002) Tools for
Measuring Daily Activities in Children: Promoting Independence and Developing a Language for Child
Disability. Pediatrics, 109: 317-9. doi: 10.1111/j.1469-8749.2011.04133.x as cited by Choo Henn Tean (2012)
DCA Review Group Report – Final – 21 December 2012 - confidential
Page 34
intellectual disabilities and related developmental disabilities. Adaptive behaviour (AB) scales
measure aspects of conceptual, practical, and social intelligence and completing AB scales
involve making judgments about whether a person does or does not typically perform specific
observable skills and tasks. In contrast, the SIS-C requires judgments to be made about the
frequency, duration, and type of supports that a child needs to participate in a wide range of life
activities. When completing the SIS-Children the focus is not on what specific, skills or tasks
the child is able to do, but rather on what types of support the child needs to receive in order to
fully participate in a variety of activities.
For information purposes, table 4 below sets out the SIS scoring scheme for assistance over
and above what a child of the same age;
Table 4: SIS for Children scoring scheme
Intensity of support
Frequency
None
0
Negligible
0
None
0
Monitor
1
Infrequent
1
Under 30 mins
1
Verbal prompt
2
Frequent (50%)
2
30 mins – 2 hours
2
Partial physical
3
Very frequent >50%
3
2 - 4 hours
3
Always
4
4 hours plus
4
assistance
Full physical
Duration (per day)
4
assistance
While the SIS is designed to itemise the support needs across different kinds of activities of
life, a similar kind of framework could offer a useful summary snapshot of the child’s care
needs over the course of a typical month. Table 5 overleaf is included for indicative purposes;
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Table 5: Example: Summary of extra monthly care needed
(compared to child of similar age)
Intensity of support
Duration (per day)
Frequency
None
1
Negligible (< once a month
1
None or negligible
1
Monitor child in other
2
Infrequent (1-2 times a
2
Under 30 mins
2
30 mins – 2 hours
3
room
month)
Monitor child in same
3
room
Frequent (1-2 times a week)
3
2 - 4 hours
4
V. frequent (3-6 times a
4
4 hours plus
5
Partial physical help
4
week)
Full physical help
5
Always (every day)
5
4.3 Additional research evidence
The following data sources revealed relevant information about the impact of disability on Irish
family life, from the child, carer and parent/guardian perspective that informed the review:

The Growing Up in Ireland survey

The CSO information on carers
The Growing Up in Ireland
The Growing up in Ireland survey is a study that is following the progress of almost 20,000
children across Ireland to collect a host of information to help improve our understanding of all
aspects of children and their development.
Data collected in 2009 shows about 0.7% of nine year olds severely affected by a disability and
4.1% moderately affected by a disability. A further 6.3% of nine year olds were reported as
having a disability which did not currently affect them.
The Growing Up in Ireland survey could be useful in determining additional care needs and
trends. Time is required to undertake this research and it is recommended that research
questions are written and pursued over the coming year.
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Central Statistics Office (CSO) information on carers
The CSO provided the NDA with the following information. Table 6 below outlines the
profile of carer’s providing care for those aged under 165.
Table 6: Profile of Carer’s providing care
Hours of care
Under 15 hours
15 to 56 hours
Varies - 15+ hours
57 + hours
Total carers of under-16 year olds in survey
%
19.3
17.9
5.5
57.2
145
These tables show that 57% of carers give more than 57 hours of care per week. The majority
of the carers had disturbed sleep (59%). The majority had effects on their health and lifestyle
(86%) whilst 49% reported feeling overwhelmed and 48% reported having to make work
adjustments. The CSO worked out a strain index and found that 55% scored a 7 or higher on
this index.
The CSO survey covered carers, and did not distinguish between those who may or may not be
getting DCA. A special survey was conducted by DSP to examine specifically those in receipt
of DCA and their attitudes and opinions to the payments.
4.4. Recommendations and issues for further investigation
The review group has identified a number of key areas for further research, summarised below.
It recommends that work continue on these issues after the current review ends.
Care assessment tools
Having considered the potential use of care assessment tools, the group is of the view that they
could have a role in determining eligibility to the allowance, with further research required in
order to establish the suitability of such tools for use in an Irish context.
5
From special analysis of CSO carers’ module, Quarterly National Household Survey Q3 2009
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The review group suggest that key elements of the Supports Intensity Scale (SIS), namely
frequency, intensity and duration of support need, could be used to show what combination of
these factors would constitute ‘substantially more care and attention’ for a child with a
disability than a child of similar age. This Scale could contribute to greater standardisation of
decisions, and greater clarity as to where the boundaries of the scheme lie.
Research on disability and care needs
The Growing up in Ireland (GUI) data presents a source of material that could be useful in
determining additional care needs and trends. Time is required to undertake this research and it
is recommended that research questions are written and pursued over the coming year.
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Chapter 5: Main issues and considerations
This chapter sets out the main issues considered by the review group. Drawing on the evidence
and submissions made, the group identified the main issues requiring attention and considered
the options available to address these. The review group approached the review with an open
mind on how to achieve a redesign that would best meet the requirements of supporting
children with disabilities and the resultant elevated levels of care required.
The first issue to be determined is how to define the level of care required in order to qualify a
child for DCA. While the meaning of words and the terminology used has implications for
parents/guardians and their understanding of the scheme, the group accepts that changing the
words in use can change the fundamentals of the scheme and could inadvertently lead to the
development of a different scheme. Having considered this fully and agreeing that the aim
should be to concentrate the available supports on the children in need of a higher level of
support, the group makes a number of recommendations to improve the understanding and
administration of the current scheme.
The first three sections deal with the purpose, role and shape of the allowance. The review
group considered all options including, widening the scope of the scheme and the introduction
of a tiered payment rate structure. However, the preferred option is to target the allowance at
children with significant care needs (the children with higher care needs as currently covered
by the scheme) and to retain the current single payment rate. In so doing, the review group
took cognisance of the original policy rationale, developments on the scheme over time, the
current budgetary context, the care needs of the children and the role that services and cash
payments should play in supporting parents/guardians of children with a disability. In agreeing
this, the work group is conscious that this implies retaining the current “higher level of care” as
a requirement in meeting the scheme qualifying conditions.
The last two sections look at policy issues around scheme linkages (DCA, CA and respite care
grant) and gives the group’s view on the appropriate age at which the scheme should finish.
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The remainder of the chapter deals with process issues that need to be addressed to improve the
scheme administration, to ensure parents/guardians have the appropriate information and to
provide a transparent process that all can have confidence in.
5.1. Defining levels of care
The review group held extensive discussions on what constitutes an appropriate “level of care”
in order for a child to qualify for DCA. The difficulty is in determining what constitutes
care/attention/supervision which is “substantially in excess” of another child. While
recognising children with disabilities have additional support needs, the qualifying feature is
whether it exceeds the bar of “substantially in excess”.
The main issue is the definition of the terminology used to describe the level of care that
qualifies a child for DCA. The DSP’s information literature states; “DCA is a monthly payment
to the carer of a child with a disability so severe that the child requires care and attention
and/or supervision substantially in excess of another child of the same age. This care and
attention must be provided to allow the child to deal with the activities of daily living. The child
must be likely to require this level of care and attention for at least 12 months.”
It is accepted that qualification for the allowance is not dependent on the medical diagnosis, but
that qualification derives from the additional care required by the child as a result of the
medical condition. This highlights the need to clearly define the level of care that qualifies a
child for DCA.
Having defined the additional level of care required to qualify for DCA, there is a need to
develop supports to assist parents/guardians in making their claim and also to assist the medical
assessor in determining care need. Addressing these issues is key to assuring parents/guardians
that the scheme operates fairly and transparently.
5.2. Terminology
The review group explored the use of terminology and the intended meaning of the words used
to describe the level of care that would lead to a child qualifying for the DCA. Submissions
received as part of the consultation process highlighted the issue of clarity around the
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description of the level of care required. Specifically, the definition of what is intended by the
terms ‘substantial’ and ‘severe’ can be confusing and difficult to interpret.
Research undertaken for the review group by the NDA indicates that there is no neat definition
for the word ‘substantial’, but that the intention, in terms of the level of care behind the use of
this word, could be determined by scores built on levels of support needed in the home with
regard to different functional areas. For comparison purposes, in Australia, they define “severe
disability” as that which results in a child “requiring, permanently or for an extended period, a
high level of constant care to maintain, comfort, sustain life, or attend to a bodily function that
the child cannot manage themselves.” Research undertaken shows there is no consistent
definition of “constant care”, with guidelines referring to constant care as where a carer
provides care on a daily basis for a significant period each day and that the care may be active,
supervisory or monitoring.
As part of the discussions the review group attempted to find other words or clear definitions
that could be used to replace these terms. However, this proved to be a very difficult task as it
was found that using other words to describe the level of care required to qualify for DCA
could in fact lead to a change in the nature of the scheme. Changing the wording could change
the intended meaning and could lead to a much higher qualification rate, whereby children with
lower levels of additional care needs might qualify, which would have consequences for the
overall integrity and expenditure on the scheme.
The representative of the DCA Warriors proposed the use of different words in the guidelines
to replace the use of the word ‘substantial, or substantially in excess’. A number of alternative
wordings were suggested, namely; ‘care at a level that is not required by a child of the same
age who does not have a disability, requires more than average care and attention, requires care
and attention above and beyond that of a child and whose care and attention exceeds that of a
child of the same age without the disability/illness’. While it was intended that the proposed
wording would provide greater clarity to parents/guardians, it appeared to lower the bar.
The review group was of the view that moving to use any of these suggested wordings would
lower the bar significantly and greatly increase the numbers of children qualifying for the
payment. If such a recommendation were to be made, the review group would have to take
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cognisance of the resultant increase in expenditure and would have to review other
recommendations to ensure that the scheme expenditure would stay within current projections.
This would mean looking at reducing payment levels or introducing tiered payment rates,
options which are discussed and considered elsewhere in this report.
Following a full exploration of the issue, the review group agreed that the best option would be
to retain the existing wording, bearing in mind the implications and possible unintended
consequences of changing the intent of the scheme. While accepting the difficulty involved in
defining the terms, it was agreed that the definitions currently contained in the medical
guidelines could form a good basis and that these should be included in all information and
made available on the web so that they would be made freely available to parents/guardians.
The definitions as taken from the Medical Guidelines are:
Substantial: The Expert Medical Group noted the definition of “substantial” as described in the
Oxford English Dictionary as “of large size or amount”. They endorsed its use in respect of the
degree care and attention that is required because of the child’s severe disability. The group
believes this forms a basis for a definition to be made available in guidelines and information, to
convey the high level of additional care required to qualify.
Severe: The Oxford English Dictionary describes “severe” as; serious, critical, extreme in an
unpleasant way. These phrases could be used in the proposed guidelines to describe the nature
of eligible disabilities.
In summary, the review group recommends that:
1.
The terminology in use to describe the level of care required to qualify for domiciliary
care allowance be retained.
2.
Definitions for the words ‘substantial’ and ‘severe’ as set out in the Medical Guidelines
form a good basis to assist parents/guardians in their understanding of the type and level
of additional care required to qualify.
3.
Definitions based on those used in the Medical Guidelines should be made available
and included in all information documents and on the web.
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5.3. Payment options and rates
The review group considered the option of introducing tiered payment rates and explored the
issues that could arise from their introduction. Research undertaken on analogous payments in
other countries indicates that most have tiered payment rates, with only the most severe cases
qualifying for the maximum payment rate. The NDA have recognised that many countries
have tiered rates related to severity of disability and that there is a case for differentiating the
rates to focus resources on where they are most needed. The review group acknowledges that
most survey respondents favoured the continuation of a single payment rate.
Payment rates vary significantly across the countries researched with many paying less than the
Irish rate. Many countries have a tiered rate related to severity of disability. For example, in
the UK the highest rate is awarded to those where the disability is adjudged to be so severe as
to require frequent attention or continual supervision throughout the day in order to avoid
substantial danger and also require prolonged and repeated attention at night. The middle rate
applies where they satisfy either the night or day condition and the lowest rate applies where
the child needs attention from another person for a significant portion of the day in relation to
bodily functions. Table 7 below gives a comparison on tiered payment rates, overall success
rates and the breakdown between rates in selected countries.
Table 7: Percentages paid at Low/Med/High (tiered) rates in other countries.
Country
Low rate
Middle
High Rate
Rate
Application
success rate
Belguim
35%
56%
9%
Not known
France
56%
37%
3%
90%
For PCH6
60%
Finland
52%
41%
7%
Average of 48%
45%
6%
56%
37%
80%
above (3)
UK
6%
90%
6
The prestation de compensation du handicap’ (PCH) is a personalised cash payment intended to
provide financial support linked to the loss of autonomy of disabled people. It applies to both adults
and children (since 2008). The average monthly payment of PCH is €800.
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The NDA suggests that the introduction of tiered payments might offer a better match to need.
There may be a case for differentiating payment rates to focus more resources on the children
most in need of this support. The NDA policy paper advised that if a tiered approach were to
be introduced in the medium term, that one possibility could be to decouple the 3 linked
payments, with DCA meeting some of the costs of disability, requiring a lower threshold of
care needs. The issue of scheme linkages is considered at Section 5.11.
A high percentage of respondents (67%) to the customer survey believed that the scheme
should continue to operate a single payment rate. Similarly, feedback received as part of the
consultation process strongly favoured a single payment on the basis that the level of support
required by children admitted to the scheme is of a nature to require such payment.
Parents/guardians were also asked if payment should increase or reduce over time, but again
the majority view was that care needs do not decrease and that payment should remain at the
same rate. More recently, in November 2012, the DCA Warriors undertook a web based survey
where 262 out of 302 respondents voted to retain a single rate of payment.
While it is not the deciding factor on whether to introduce tiered payment rates, the review
group is conscious of the additional administrative issues to be considered if such a system
were to be introduced. It is also acknowledged that an amount of work would need to be
undertaken to determine the appropriate payment levels and care level thresholds at which
these would apply. DSP representatives made it clear that administrative considerations should
not be a determining factor when deciding on the best option for the support of the children
concerned.
The review group preference, having considered the issue fully, is to retain a single payment
rate and to recommend the retention of the ‘higher end care requirement’ as the qualification
criteria for the allowance. Retention of a single payment rate is also the preference of
parents/guardians as expressed in submissions, through the customer survey and more recently
in the DCA Warrior survey.
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Having fully considered payment rates and options, the review group recommends:
4.
(a)
The retention of a single payment rate for the DCA scheme.
(b)
Acknowledges that this implies the retention of a higher level of care as a
requirement to qualify for the allowance and the implications of this when
defining the terminology used to describe the required care levels.
5.4. The application process
The review group studied the application process in use and has also taken on board the
information supplied in submissions and the consultation process. It is acknowledged that the
current process does not clearly identify the information that parents/guardians should supply
in support of their claim. There is a belief that the application form is weighted in favour of
physical disability and that the form does not cater adequately for neurological developmental
conditions.
Evidence was also heard that deficiencies in the application form are leading to
parents/guardians submitting lots of information in certain cases where less, but more targeted
reports would suffice. This leads to MAs having to read many pages of reports, with a specific
example of a case involving reports running to some 300 pages quoted, in order to find the
pertinent information that would assist them in providing an opinion on care needs of the case.
The cost of commissioning such reports was highlighted as an issue.
Submissions were also received to the effect that the form in use in Australia would be suitable
for use in an Irish context. However, the Australian form is used in conjunction with an
assessment process/tool and a tiered rate payment, so implementing one without the other is not
seen as a viable option. Following extensive consideration it was agreed that the most
important issue would be to have the attributes of the Australian system taken on board
(simplicity of process, ease of completion of forms, transparency on outcomes) in designing a
new application process.
The review group considers that further work might be undertaken in this area, exploring the
possibility of using an assessment tool as part of, or to assist the decision making process. This
aspect is further elaborated in Section 5.6.
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In order to address these concerns and in an effort to simplify the process, the review group
nominated a sub group to design a new application form. The sub group reviewed submissions
on the form and designed a new form that allows parents/guardians provide the relevant
information in a user friendly manner. An additional medical report form has also been
designed for completion by medical experts in cases involving neurological developmental
conditions. This aspect is covered with the medical assessment process in Section 5.5.
In summary, the review group recommends:
5.
(a)
The use of the new application form, designed as part of the review process.
(b)
A review of information guidelines to ensure that parents/guardians are aware of
the new application form and the benefit of providing succinct information on
their child’s care needs.
5.5. Medical assessment process
Issues raised on the medical assessment process, include the suitability of the forms in use for
medical professionals in providing their report, the desirability of having the child seen by a
medical expert, the qualifications of the medical assessors making the assessment.
Research on similar allowances in other countries indicates that desk assessment based on
reports submitted by parents/guardians and medical professionals is the norm. The exception
to this is Belgium where medical professionals examine the child as part of the assessment
process, but this practice is in the process of being changed with a planned move to desk
assessment. Based on this, the group accepts that a desk assessment process is appropriate and
recommends that attention should focus on ensuring that Medical Assessors have appropriate
training and supports available to assist them in making their assessments.
The qualification of individual MA has been raised as an issue on many occasions. The Chief
Medical Officer has explained that the while MAs come from different medical backgrounds,
all are qualified, registered and experienced medical practitioners and he outlined to the group
the training undertaken to ensure all are well briefed in interpreting reports and in assessing
care needs based on the evaluation of written evidence. The MAs also share experiences and
confer in ‘case conferences’ on particular types of difficult case. It is agreed that it would be
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helpful for parents/guardians to have the fact recorded when a decision has been the subject of
a case conference by MAs.
Having reviewed the issues involved in determining levels of care required, it was agreed that
an additional form to be completed by medical professionals could be useful in assisting the
MAs in their work. Additionally, the group explored the possibility of having outside medical
expertise available to be consulted by MAs in cases where they believe this would be
beneficial. This is further elaborated at Section 5.7.
The Chief Medical Officer (CMO), in consultation, has designed a supplementary form for
medical/care information that should be completed in specific cases. This form has a lot of
similarity with a medical report form in use in certain HSE areas, but with some additional
information that MAs believe would be helpful in determining the care needs of the child. The
recommendation is that this form should be completed where the child has a neurological
developmental condition. The nature of the form may require that it is completed by different
personnel, or combinations of medical expert depending on the condition of the child
concerned. In many instances this information will be provided by multi-disciplinary
professionals working in the area of disability and who have access to, or are involved in the
treatment of the child’s condition. The CMA has also designed a form for use by the MAs in
assessing cases where the additional medical form is completed.
It is acknowledged that parents/guardians can have difficulty in getting assessment forms
completed, so the instances where this form should be completed will have to be clearly
specified. It is accepted that there is a danger that all applicants will feel the need to have such
an assessment done, even where this is not required and potentially at considerable cost.
In summary, the review group recommends that:
6.
(a)
The supplementary form to provide additional medical and care detail for
children with pervasive developmental disorders is made available for
completion by the relevant medical experts.
(b)
This form should be completed and submitted with claims for DCA where the
child has a pervasive developmental disorder.
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(c)
The form should be made available through Citizens Information Centres and
other information providers and should also be available on the web.
(d)
Where the form is not submitted, the parent/guardian will be afforded an
opportunity to supply this evidence prior to an unfavourable opinion being
formed.
7.
Additional information on opinions is provided by MAs (the newly designed form will
assist with this) and that any case which has been subject to a case conference and/or
consultation with other professionals should be noted accordingly.
5.6.
Care Assessment Tools
The NDA has undertaken research on behalf of the review group to determine the availability
and usability of assessment tools that could be of use in determining the level of care required
in individual cases. While a number of tools have been reviewed, with detail on the research
published in a separate report and summarised in Chapter 4, it is noted that many systems rely
on assessments designed to establish therapy support needs as opposed to the level of care and
supervision required in the home.
The Australian model referred to earlier, in addition to having a user friendly application form
also uses an assessment tool to determine eligibility. Other countries have similar processes
and assessment tools in use, but it is likely that these have been adapted to the needs of the
specific country. Further research may be beneficial to determine the adaptability of a care
assessment tool for use in an Irish context.
Among the tools evaluated it is believed that SIS offers a useful way to consider the different
dimensions of care – Intensity, Frequency & Duration. The table in section 4.2 provides an
indicative summary indicating how this could be applied to scoring under each heading
whereby the assessment tool could be used to establish the minimum score level to qualify for
DCA. An alternative may be to ask parents/guardians to assess total care needs and compare to
a standard table of corresponding care needs of a non-disabled child. Based on the research
undertaken to date the NDA is not recommending the immediate use of any care need
assessment tool, but suggests that further research is needed to fine tune an appropriate scoring
system.
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Having considered the potential use of care assessment tools, the review group is of the view
that care assessment tools can have a role in assisting the determination of eligibility to the
DCA and recommends;
8.
That further cross agency work is undertaken, led by the NDA to research the potential
use of care assessment tools, to determine their usefulness in an Irish context.
9.
(a)
That further research is undertaken in order to establish the suitability of such
tools in assisting the decision making process, in an Irish context.
(b)
Assuming a suitable tool is found, then a trial might be undertaken to determine
the similarity of outcomes when using real cases.
(c)
The desirability of implementing a care assessment tool will be informed by the
results obtained from testing the new medical forms.
5.7. Review of Medical Guidelines
As part of the terms of reference, it was agreed that a review of the Medical Guidelines would
be undertaken. The guidelines were developed, in advance of the transfer of the scheme to
DSP in April 2009, to address issues which had arisen whereby success/refusal rates varied
between different parts of the country. The guidelines were implemented on the transfer of the
scheme in April 2009, with a view to establishing a level of consistency across the state and
while parents/guardians and advocates have raised issues relating to success/award rates, it is
generally accepted that there is now consistency in the administration of the scheme.
The CMA consulted with a number of medical experts, including a Consultant in
Developmental Paediatrics and a Principal Clinical Psychologist, and sought their views on the
on-going suitability of the medical guidelines. The responses received indicated that the
guidelines were “well developed”, “clear and concise” “outlining the criteria for eligibility
clearly”. Although they remain relevant and fit for purpose, they would benefit from some
minor amendments. These included the following suggestions:

A system where rates of payment reflect the care needs of children may be more
equitable.

A clear and transparent process is required in relation to desk assessment.
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
Consider devising a points system with certain conditions getting a score and then
applying a rating scale from mild to severe and enduring care needs, and
incorporating an adaptive functioning measure or checklist. The vineland adaptive
behaviour scales second edition (vineland ii) may be suitable in this regard.

The developmental milestones checklist could be revised to make it more detailed
and comprehensive.

Noted that quantification of need is difficult to assess as children with the same ICD
10 code could require very different levels of support. It was suggested that the use
of the ‘Likert’ scale could help with this.

The “more and less likely” list, while appropriate, could be amended to reflect
certain conditions that would be appropriate to place in the “more likely” list, e.g.
F84, pervasive Developmental Disorders, G40, Epilepsy and some F80 disorders
should also be reclassified.

It was acknowledged that using something like the WHO-ICF scoring system, as an
alternative, would be even less user friendly that the current process/form.

The current form is considered to be less suitable for very young children.

The age of attainment data is of limited use to MAs, unless applied to the section of
the form completed by parents/guardians, as it doesn’t reflect the information
sought in the medical section of the form.

Frequency of reviews should reflect the child’s condition and the likelihood of
improvement.
List A & List B:
The Medical guidelines relating to the DCA scheme contain two lists (referred to in this report
as List A&B), that detail the type of medical conditions that are “more likely“ and “less likely”
to result in a disability so severe that the level of additional care required as a result would be
appropriate to qualify for DCA.
The medical guidelines are intended to support Medical Assessors in determining eligibility of
applicants. They are not prescriptive and each individual application is decided based on the
severity of the condition, the expected duration and the care needs as instanced by the medical
evidence.
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Concerns were expressed that if a child had a condition that was on the “less likely” list, their
chances of being considered eligible for DCA would be reduced. Parents/guardians have
interpreted this as meaning that a child with a condition on List B has to clear a higher bar, i.e.
require a higher level of additional care in order to qualify for the allowance. While assurances
have been given that all claims are assessed on their merit and that qualification is based on the
additional care requirements as opposed to the underlying medical condition of the child, the
perception remains that different conditions are treated differently.
Following detailed consideration the review group recommends that the lists be removed from
use. The Chief Medical Officer in conducting his review of the guidelines has agreed to
remove this section altogether, as he considers that the lists no longer have a value.
In response to concerns that the current age of attainment data is inadequate and only covers
children up to age 4, the CMA will amend the medical guidelines to include age of attainment
data (using the CDC age of attainment data) for all children up to and including age 18.
A proposal was made to the effect that DSP should publish sample cases on its website to
indicate to parents/guardians the type of care requirements that would either qualify or not for
the allowance. These could be based on anonymous real life cases. However, after full
consideration the review group agreed that, while well intentioned this could also lead to a
perception that cases are not judged on their own merit. As a result the review group is not
recommending this action at present.
As referred to briefly in Section 5.4, it was suggested that there would be benefit to MAs in
having a panel of experts available to advise on specific cases, through desk assessing reports
where they are experiencing difficulty in recommending on entitlement. Having access to
other medical professionals with expertise in a particular condition or disability would be
advantageous. It was also suggested that DSP might consider employing MAs from other
relevant multi-disciplinary backgrounds to have such expertise available in-house. It is
considered that this suggestion can be further explored in the context of proposals to introduce
additional capacity to the medical assessment area.
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The review group notes the advice that the Medical Guidelines are fit for purpose and
recommends the following:
10.
That minor changes are required to the medical guidelines and recommends that these
are made and that the revised guidelines are published promptly.
11.
That list A and B are removed from use and not referred to in any guidelines for use in
the assessment process.
12.
That the CDC age of attainment data be used for attainment comparison purposes on
children aged 0 to 18.
13.
That as much information as possible is provided to parents/guardians along with, or as
part of the decision on their claim, including in the case of pervasive developmental
disorders the medical report completed by the MA.
14.
That DSP explore the feasibility of putting in place a multi-disciplinary panel,
comprising professionals working in the area of children’s disability that can be
consulted by MA’s to support them in forming their opinions.
5.8. Reviews
The implementation of the review programme was one of the most contentious issues in the
administration of the scheme. While parents/guardians accept that there should be a review
policy, most consider that the period between reviews should be extended. Issues around the
review process also need to be addressed. Some of these had been addressed earlier in 2012,
before the review programme was suspended due to the announcement of the scheme review;
the changes made have been examined again in the context of this review.
The review group accepts that all schemes operated by DSP should have a review policy and
that this is a requirement in order to satisfy the C&AG that appropriate controls are in place
and to meet the Secretary General’s obligations as accounting officer.
The review group discussed the review interval period to be applied to the scheme. While
parent representatives favour longer intervals this has to be balanced with the need to review
cases in an appropriate timeframe. i.e. children with treatable conditions may only require the
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allowance for one or two years. It is also accepted that certain conditions will not improve and
that a number of children should not have their claims reviewed. Currently, some 16% of
children have their files marked ‘do not review’ at the claim award stage. The availability of
resources to complete reviews in a given time frame is also a consideration. While it is
accepted that most review dates will be set for a three or five year interval the review group
acknowledges that it may be appropriate to review some claims in a shorter time frame.
Parents/guardians have a view that all claims were being reviewed in a short period, after 1 or 2
years, but this perception is due to the lead time between the first applications being awarded
by DSP in 2009 and the first of the 2 year reviews arising in 2011.
The time available to prepare for a review has been an issue in the past, but this was addressed
to the satisfaction of parents/guardians prior to the suspension of the programme.
Parents/guardians are now notified on review dates when their claim is awarded. When their
case is coming up for review, they are given 3 months advance notice and then a further 60
days to complete their review forms. The review group recommends that this should continue
and has accepted a proposal from DSP representatives that would mean that they would get a
further notification in advance of receiving a decision to terminate payment. The intention is
that this will advise parents/guardians that the DO is about to make a decision and invite them
to submit any additional information within 21 days. This will provide a further opportunity to
provide any new evidence before the claim is stopped.
In summary, the review work group recommends that:
15.
(a)
A review policy is an appropriate and necessary part of the management of the
scheme.
(b)
Most claims will have review dates set for a three or five year interval but it is
acknowledged that it may be appropriate to review some claims in a
shorter/longer time frame.
(c)
Some claims will continue to be classified as ‘do not review’ due to the severity
of the child’s condition and its expected duration.
(d)
The improvements implemented in relation to notice of review dates and
advance notice of review should continue to operate.
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(e)
Parents/guardians receive an additional communication from the DO to give
them an opportunity to provide additional information before the review
decision is made (21 day notice) in cases where the DO is considering
terminating payment.
5.9.
Appeals
The review group acknowledges the independence of the SWAO and the important role it plays
in ensuring that applications are treated fairly and consistently.
It is intended that the revised DCA application form combined with the new assessment form
to be introduced for the medical assessment process will reduce the number of applications
going to appeal, as it is considered that more cases will receive a positive decision at an early
point in the decision process. The revised medical assessment process and the additional detail
to be provided by the MA in relation to the information considered in arriving at their opinion
in each case should assist the appeals officers in reaching their decision. In reviewing cases
there will be greater clarity on the aspects of the child’s condition, care needs and
circumstances that have been considered and the rationale the MA has applied when providing
to an opinion on the application.
Currently the AOs give a very short ‘appeal allowed/disallowed’ decision. It is recommended
that explanations for the appeal decision would be routinely provided to assist both applicants
and deciding officers in having a better understanding of the decision. Appeals officers would
advise applicants when allowing an appeal when a review is being recommended (if an appeals
officer is recommending a review period).
Issues around delay in the appeals process, highlighted in consultation, will be alleviated by the
process and the expected reduction in claims going to appeal.
The review group recommends that:
16.
(a)
The full reason for a revised decision on appeal, positive or negative, should be
provided to parents/guardians and deciding officers to allow for an
understanding of how the revised decision was arrived at as this information will
inform the decision process.
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(b)
The SWAO should be briefed on the changes being introduced to the scheme
administration.
(c)
The most helpful way of providing the required information on decisions may be
in the form of a template document.
5.10. Communications
Communication is regularly raised as an issue on schemes operated by DSP and in that respect
the DCA is no different. Parents/guardians have highlighted the need to improve the level of
information available at all stages in the process and particularly at the decision stage. In this
respect, the DSP’s objective to have information as freely available as possible, supported by
the development of information channels and the work of the Citizens Information Service is
noted. This study confines itself to communications on DCA.
The consultation process highlighted communication limitations experienced by
parents/guardians. Many of the submissions (76) highlighted the need for more detail on the
reasons for disallowance, with a suggestion that a checklist of what is passed and what is failed
in the assessment could be used. If DCA is refused, a clear and detailed explanation needs to
be given on the reasons for the refusal. At present, parents/guardians are merely informed that
in the opinion of the MA/DO their child is not considered to need care and attention
substantially in excess of a child of the same age without their disability.
Submissions also recommended that the MA should complete a detailed form indicating how
his/her opinion was reached. A new form has been developed as part of the review and it is
intended that it will be used by MA’s to provide this additional information.
In the consultation seminar parents/guardians asked if they could be sent a text to inform them
of progress on their application (e.g. where they are in the queue). The availability of detail on
the basis for decision in the decision letter featured again. It was stated that the wording of the
refusal letter is very clinical and impersonal.
The consultation session for groups suggested that DOs should be given more detailed
feedback from the MA to be able to better communicate reasons for their decision in any letters
of refusal.
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In order to address shortcomings in the communication on the scheme, the review group
recommends:
17.
A redesign of communications on the DCA scheme to ensure that parents/guardians
have timely access to information, clarity on the process and full information on all
decisions made on their claims.
(a)
Clear definitions on the level of care required in order to qualify for DCA be
included in all information on the scheme.
(b)
Decision letters should be reviewed to include as much information as possible
on the decision reason.
(c)
Wording of communications should be reviewed with better use to be made of
empathetic language
(d)
Use should be made of the DSP internet site to make all relevant information
available, including clear definitions on terminology in use.
5.11. Linkages across claims
As detailed in Section 2.4, DCA and CA have different qualifying conditions and are designed
to address different needs. The review group considered the appropriateness of a DCA
qualification leading to automatic award of the RCG and satisfying the medical component of
the CA/CB application. Submissions have been received to the effect that the link should be
removed. This could potentially allow someone to continue to receive one allowance when the
other is refused or withdrawn.
Under current legislation (Social Welfare Consolidation Act 2005), it is a prerequisite in order
to qualify for CA (for a child under the age of sixteen) that the applicant is in receipt of DCA
for that child. No similar requirement exists in relation to children over the age of sixteen.
Decoupling the two allowances would allow someone apply for CA in respect of a child under
the age of 16 years without the necessity of first applying for DCA. The applicant would then
have the option of applying for the DCA if they wish, in which case they have already satisfied
the medical criteria for the CA (with an acknowledged higher ‘level of care’ threshold) which
could be accepted as satisfying the DCA requirements also.
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While it is anticipated that the majority of applicants awarded CA will also apply for DCA, the
overall numbers applying for either allowance should not differ substantially from the current
numbers. Applicants who do not meet the criteria for CA could proceed with a separate
application for DCA. In this respect, it is accepted that the ‘level of care’ qualification criteria
for CA is higher than that required in order to qualify for DCA.
Currently, in cases where the DCA is withdrawn on review, the entitlement to CA also ceases
due to the legislative link between the two schemes. This withdrawal of the two schemes
together with the accompanying RCG can have a significant financial impact of up to €17,000
p.a. on some families. By decoupling the two payments, a DCA termination following review
would trigger a review of the CA with the allowance continuing to be paid until such time as
the review would be completed.
The Respite Care Grant (RCG) is an annual grant paid in respect of each individual person or
child for whom either DCA or CA/CB is payable, provide they are in payment on the 1st
Thursday of June in a given year. RCG is paid automatically to those in receipt of either
CA/CB or DCA, only one grant per child is payable. The rate of the RCG in 2012 was €1,700.
In considering the linkages between DCA and Carers the group considered it appropriate that
the RCG should continue to be paid to those in receipt of DCA.
To summarise, the review group considers that the qualification “tie” between the two schemes
(i.e. that the child must be qualified for DCA to be eligible for CA/CB) is inappropriate given
their different purpose and qualifying conditions.
Having considered this carefully, the review group recommends that:
18.
The link between DCA and CA should be removed, with the required legislative change
to be made to decouple the allowances. This will eliminate the automatic medical
exemption for CA for future DCA applicants.
19.
Legislation should provide that the withdrawal of DCA on review should not lead to the
immediate withdrawal of CA, with a recommendation that the CA continues in payment
for a maximum defined period (possibly 6 months), subject to continuing to fulfil all
other conditions.
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5.12. Age limits for receipt of DCA
The group considered the appropriate age to which DCA should be paid. Currently DA is the
only adult payment made to 16 year olds, with all other adult allowances start at age 18.
Young adults at 18 have options such as activation, training or jobseekers allowance in addition
to disability allowance, whereas 16 year olds do not have these options and can currently only
apply for DA. There is a concern that giving such a significant payment directly to a child can
have an unintended negative impact on their future career development. Parents/guardians and
advocacy groups have raised the appropriateness of this arrangement, arguing that giving this
level of financial independence to a child can be counter-productive and not in the child’s best
long term interests. The customer survey indicated that 94% favoured continuing payment of
DCA to age 18. The review group accepts that 18 is the appropriate age for adult payments to
commence and recommends that the appropriate supports (good information on options in the
first instance) be made available in advance of the young people concerned reaching 18 to
assist them in choosing the best option to maximise their potential.
The review group’s consensus is that:
20.
The payment of DCA continue to age 18 years and change the commencement age for
DA to 18 years, as this would be a positive development for children and their families
alike.
21.
(a)
In the event of increasing the DCA age to 18, it is also recommended that
information on all available options should be communicated to the people
concerned at age 17, giving them sufficient time to prepare for transition from
DCA.
(b)
Over time the range of training and activation measures available for people
with disability should be developed and targeted at this customer cohort.
5.13. Implementation and Monitoring
In summary, the review group believes that implementation of these recommendations will
make the administration of the scheme more transparent and parent/child friendly. The aim is
to ensure that relevant information is available to parents/guardians at all stages of the process
and to ensure that all relevant information is supplied to support MAs in forming their opinion
on the care requirement of the child. While accepting that they will still have to assemble
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evidence relating to their child’s care needs, the desired outcome is a scheme administration
which supports them through this process.
The review group makes the following recommendation on arrangements to monitor progress
on the implementation of the recommendations in this report:
22.
A process will be developed and put in place to monitor the implementation of the
recommendations from the report, with;
(a)
An implementation plan to be developed following presentation of the report to
the Minister and,
(b)
A group to be convened with representatives from the main agencies and
representative groups 3 months after the Minister approves the report to receive
an update on the implementation plan and progress made.
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Chapter 6: Summary of Recommendations
The review group considered the purpose of the scheme to be the most important issue to
determine in the first instance. Consideration was given to how the scheme could be
developed to best address the needs of parents/guardians caring for children with disability.
Options considered ranged from better defining the existing scheme, with the retention of the
single payment rate to the widening of the scheme and the introduction of a system of tiered
payment rates. This is key to defining the future role, shape and scope of the allowance.
Following in-depth consideration the review group’s consensus is that the ‘higher level of care’
definition should be retained. The need for clarity on the definitions of the words ‘severe’ and
‘substantial’, with these definitions made freely available so that all are aware of the level of
additional care required in order to qualify for DCA. In taking this decision the review group
is aware that this will mean that overall success rates on applications for the allowance will not
be expected to vary much from those currently experienced, allowing for the natural growth of
the scheme. This will ensure that the payment continues to be targeted to meet the care of
those children most in need. Further details are set out at Section 6.1.
The review group makes a number of recommendations for immediate implementation, to
ensure the scheme meets its purpose and to improve transparency in its administration. It is
intended that these will have the effect of providing clarity for parents on the process and
improving the success rate on initial claims, with a resultant reduction in the need for parents to
make appeals. These recommendations are summarised at Section 6.2.
A number of policy recommendations are included; relating to linkages between the DCA and
other schemes and the appropriate age at which payment of the allowance should finish. These
recommendations are summarised at Section 6.3.
The review group has identified issues that require further work over the coming year and has
included recommendations for longer term consideration. These include further research that
should assist DSP with the administration of the scheme over the medium term. Linkages
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between the provision of services, particularly the ease of availability of reports for parents has
been identified as an issue. Further work in this area is set out in Section 6.4.
6.1. Purpose of the Domiciliary Care Allowance (DCA) scheme
In considering the role and purpose of the DCA scheme, the review group took into account
submissions received and also examined how the scheme compares with the carers allowance
scheme. The review group considered the similarities between DCA and CA and explored the
contention that the DCA could be seen as a carer’s ‘light’, being a non-means tested allowance
for caring for a child with well-defined additional care needs. Following full consideration, the
review group recognises that the allowances fulfil different purposes:

DCA is a payment made in recognition of the additional demands associated with
caring for a child with a severe disability, whilst

CA compensates the parent for the limitation of employment opportunity that comes
with providing care for a child with a disability. In this context, it is a means tested
income replacement scheme.
Agreeing the purpose and role of the scheme, the next issue to consider is the additional level
of care that is required in order to qualify for the scheme. Ambiguity exists around the
definitions in use, with parents highlighting that there is no clear definition of what constitutes
the level of care required to qualify. The review group considered this and also looked at how
the scheme might be redefined, taking into account experience from other countries, to better
meet the support needs of the children concerned.
Having considered all options, including the opening up of the scheme to a much wider number
of children by lowering the definition of care required and having examined the effect of this,
including the effect on payment rates (whether retaining a single rate or introducing tiered
rates) the review group recommends the retention of the ‘higher level of additional care’. It
also recommends that clarity around definitions of additional care be provided to parents to
assist them in understanding the role and purpose of the allowance.
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6.2. Recommendations for immediate implementation
A number of recommendations are included in Chapter 5 to address issues raised in relation to
the administration of the scheme. These address the main process issues and can be
summarised under the following process headings:

The application process

The medical assessment process

The medical guidelines

The review process

Communications

The Appeals system
The rationale for the recommendations is set out in Chapter 5, with the recommendations listed
in the Executive Summary.
6.3. Policy recommendations
The review group has a number of policy recommendations which will require legislative
change. These are grouped below, for ease of reference:

It is recommended that qualification for the DCA should continue to be contingent on a
child requiring a high level of additional care.

The link between DCA and CA/CB should be removed with the required legislative
change made to decouple the allowances. This will eliminate the automatic medical
exemption for CA/CB for future DCA applicants.

Withdrawal of DCA on review should not lead to the immediate withdrawal of CA,
with a recommendation that the CA continue in payment for a maximum defined period
(possibly 6 months), subject to continuing to fulfil all other conditions.

DCA should continue to be payable up to age 18, with the starting age for DA to be
increased to age 18.
6.4. Issues for further investigation
The review group has identified a number of areas that could benefit from further research,
summarised below, and recommends that work continue on these after the review ends.
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Care assessment tools
Having considered the potential use of care assessment tools, the review group is of the
view that further cross agency work should be undertaken, led by the NDA to research the
potential use of such tools in an Irish context. While research on assessment tools may
lead to the development of a toolbox of assessment tools, it should also include research on
scoring mechanisms.
Research on disability and care needs
The Growing up in Ireland (GUI) data presents a source of material that could be useful in
determining additional care needs and trends. Time is required to undertake this research
and it is recommended that research questions are written and pursued over the coming
year. The NDA has offered to assist DSP with this research.
Service provision
The group is concerned that appropriate services should be available to treat the children
involved. There is also a concern at the cost incurred by parents in accessing reports and
assembling information to enable them make a claim for DCA. The amount of time spent
on assessment work and form filling by professionals and the resultant impact on therapy
provision is also acknowledged. While accepting that it will take time to change this, the
Departments of Social Protection; Health and Education and Skills with the involvement of
the NDA will continue to co-operate on this issue after the current review is completed.
6.5. Final conclusion
In conclusion, the review group believes that implementation of these recommendations
will enable the scheme meet its objective and make its administration more transparent and
parent/child friendly. While accepting that parents/guardians will still have to assemble
evidence relating to their child’s care needs, the aim is to develop a scheme administration
which supports them through the process.
The implementation and monitoring arrangements that are being put in place will ensure
that progress is monitored and that the scheme remains fit for purpose.
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Appendix I: Members of Review Group
 Ms. Sylda Langford (Chair)
 Mr. Roy Baldrick, Department of Social Protection (Secretary)
 Ms. Teresa Leonard, Department of Social Protection
 Mr. Tony Kieran, Department of Social Protection
 Dr. Clement Leech, Department of Social Protection
 Mr. Brendan O’Leary, Social Welfare Appeals Office
 Mr. John Conlon / Ms. Joan O’Shea, Department of Public Expenditure & Reform
 Mr. Colm Desmond /Ms. Ann Mc Grane, Department of Health
 Ms. Siobhan Young, Department of Children & Youth Affairs
 Ms. Siobhan Barron, National Disability Authority
 Dr. Sinead Hanafin, Researcher, Trinity College, Dublin
 Ms. Jacinta Walsh, Irish Autism Action
 Ms. Lorraine Dempsey, Special Needs Parents Association
 Ms. Mary Dunne, Midlands Regional Forum of People with Disabilities*
 Ms. Helen Maher, DCA Warriors
* replaced by Ms Claire Duffy, Carers Association in October 2012
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Appendix II: List of Reference Reports/Documents
 Domiciliary Care Allowance Review Report: Consultation undertaken for Review of
the Allowance
 Supports for Families of Children with a Disability: Research Report on 6 Countries by
Mel Cousins and Associates
 Policy Advice Paper from National Disability Authority on Domiciliary Care
Allowance Review
 National Disability Authority Research Document on Assessment Tools
 DCA Warriors members Poll results
 Presentation on Domiciliary Care Allowance Customer Survey
 Forms:

Revised Domiciliary Care Application Form

Medical Report Form (ASD Specialist)

Medical Assessment Report Form
All reference reports/documents available at www.welfare.ie
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APPENDIX IV:
DCA application process:
Current Process

Application form/information leaflet obtained via Website, SWLO, CIC, DCA section
Sligo or other sources.

Completed application form with necessary GP validation is sent by parent/guardian to
the Department, together with any medical reports or other supporting documentation
that the applicant wishes to have considered.

Text message issues to applicant to confirm receipt of claim form by the Department.

Claim is registered on the Department’s computer system, SDM.

The application form and all supporting documentation is scanned into the system.

The scanned documents are forwarded to MRA section to be assessed by one of the
Department’s medical assessors.

The medical assessor having examined the application and supporting documentation,
provides an opinion to the Deciding Officer on whether in their opinion the child meets
the medical criteria for the scheme. This is noted electronically on the customers claim
record on the SDM system.

The Deciding officer having considered the opinion of the MA and the other qualifying
conditions for the scheme makes a decision and advises the customer of that decision in
writing.

In the decision letter that issues to the customer, they are advised of the decision and
given the right of appeal if not satisfied with the decision made.

In the event of an unsuccessful application, the customer can, if they wish request that
the application be reviewed and can submit additional information in support of their
application, or they can appeal the decision directly to the Social Welfare Appeals
Office.

In either case, the application is sent for review by another medical assessor, together
with any new or additional medical or other information received.

If the medical assessor considers that the medical criteria are now met, a revised
decision is considered by the deciding officer. If not, the case is passed to the SWAO
for processing if appropriate.
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Revised process:

Revised application form and revised information guidelines obtained via Website,
SWLO, CIC, DCA section Sligo or other sources.

Completed application form with necessary GP validation is sent to the Department
together with any medical reports or other supporting documentation that the applicant
wishes to have considered.

Applicants will be advised on the information leaflet and claim form to complete an
“additional form” if their child has a pervasive developmental disorder (PDD), e.g.
Autism Spectrum Disorder. This form is to be completed by a medical
professional/specialist dealing with the child. It will detail the child’s conditions and
any specific care needs the child might have as a result of their disability and will assist
the MA if forming their opinion

Text message will issue to confirm receipt of claim form by the Department.

Claim is registered on the Department’s computer system, SDM.

The application form and all supporting documentation is scanned into the system.

The scanned documents are forwarded to MRA section to be assessed by one of the
Department’s medical assessors.

If the “additional form” is not received and is considered desirable/necessary by the
MA, a decision will not be made until the applicant has been advised to the benefits of
providing the form. If a completed form has not been provided in a reasonable time
frame the MA make a decision.

The medical assessor having examined the application and supporting documentation,
provides an opinion to the Deciding Officer on whether the child meets the medical
criteria for the scheme. This is noted electronically on the customers claim record on
the SDM system.

Where the opinion of the MA is a negative one, a detailed assessment form will be
completed to document the areas that were considered by the MA in forming their
opinion. It is proposed that this form will primarily be used in applications where the
child has a pervasive developmental disorder (PDD).

The Deciding officer having considered the opinion of the MA and the other qualifying
conditions for the scheme makes a decision and advises the customer of that decision.

In the written decision letter issued to the customer, they are advised of the decision, the
opinion of the medical assessor in the case (and a copy of the MA report in PSD cases)
and given the right of appeal if not satisfied with the decision made.
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
In the event of an unsuccessful application, the customer can, if they wish request that
the application be reviewed and can submit additional information in support of their
application, or they can appeal the decision directly to the Social Welfare Appeal
Office.

In either case, the application is sent for review by another medical assessor, together
with any new or additional medical or other information received.

If the medical assessor considers that the medical criteria are now met, a revised
decision is considered by the deciding officer. If not, the case is passed to the SWAO
for processing, if appropriate.

The appeals officer in reaching their decision will provide a reason for their decision in
each case, for the benefit of the applicant and the deciding officer. This may take the
form of a template document.
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