While all of the cases which are the subject of this investigation relate to applications for DCA to the same Community Care Area of the HSE (Dublin West (HSE Dublin Mid-Leinster)), the details in each individual case differ considerably.
Complaint from Ms Sarah Nolan
The central issue in this case is whether Patricia Nolan meets the requirements set out in the Department of Health and Children guidelines of being in need of continual or continuous care and attention which is substantially in excess of that normally required by a child of the same age. In support of her application for DCA, Ms Nolan furnished two reports from the Consultant Paediatric Haematologist, Our Lady's Hospital for Sick Children, Crumlin. These letters, which describe SCD as
"a life-threatening red cell disorder",
set out, in detail, the potential affects of the disease, Sickle Cell Crises, and the circumstances and conditions that can bring these on. The letters also highlight the need for the children
"to be constantly monitored and brought to hospital should any warning signs be present"
It is noted that neither of these reports, which were considered in the applications for both girls, differentiates between the condition of the girls and also that they clearly indicate that both girls need the same level of additional care and attention. There is nothing in these reports to suggest that, because one of the girls has had to be admitted to hospital more frequently than the other, her condition is therefore, more severe. Rather, it appears to me that this would indicate that there is constant monitoring of both children by their mother as she identifies the need to bring either child to hospital when necessary. In addition, it appears to me that, the fact that one of the children has attended hospital more frequently, does not mean that the level of care and attention provided by the mother in the home to the other child is any less. In this regard, it is noted that in one of Consultant Paediatric Haematologist's letters it was stated that
"It is only because of the care and attention given by their mum that they have not had more admissions than they have already had" - again this relates to both girls.
The medical evidence available to the SAMO, including the reports from the Consultant Paediatric Haematologist with OLHSC and those compiled by the Area Medical Officers (AMO), is very similar in relation to both girls - the differences in the AMO reports appear to relate only the fact that one attended hospital more than the other. The reports by the Consultant Paediatric Haematologist were prepared in her capacity as a hospital consultant specialising in the area of paediatric haematology and, therefore, her opinions on the nature and severity of the girls' diagnosed conditions and the consequential requirement for excess care and attention must be seen to carry considerable authority. However, there is no indication that the SAMO had sought advice from another person with specialist training or qualification in the area of paediatric haematology in order to assist him in making an informed decision.
There is no dispute regarding the actual diagnosis of Sickle Cell Disease for both girls. In relation to the severity of the disease, the reports provided by the hospital consultant specialising in the area of paediatric haematology, do not make any distinction between the girls to suggest that one is more severely disabled than the other and, similarly, these reports indicate that both girls require equal levels of care and attention which is
"well above that of a normal child of the same age".
On the basis of the medical and other evidence available in this case, and in particular that provided by the Consultant Paediatric Haematologist, I consider the decisions to award DCA in respect of one of the girls, Karen, while at the same time refusing it in respect of the other, Patricia, to be inconsistent.
Complaint from Ms Emer Kelly
In this case the evidence suggests that the original application was turned down because the SAMO considers ADHD to be a behavioural disorder, and not a disability. The opinion expressed by the SAMO in this case is similar to an opinion the same SAMO (acting in his capacity as Chair of the Medical Review Committee) had expressed to my office in another case. In that case the SAMO wrote the following:
"The Domiciliary Care Allowance is administered in respect of children who have a severe disability. Disability is the long-term consequence of injury, congenital abnormality or chronic physical or mental disease which interferes with a persons ability to carry out every day activity of living. Care in the context of disability is the assistance given in relation to these activities where the disabled person is unable to carry them out or needs help to carry them out. ....... has Attention Deficit & Hyperactivity Disorder. This is a behavioural disorder. .... Children with ADHD may demand a lot more supervision than normal children but they do not require care in the context of disability ...."
(In the earlier case, while my Office's examination of the complaint was ongoing, the child's mother made another application for DCA (with the diagnosis still ADHD) which was considered by a different SAMO who approved it and DCA was awarded. In view of the later successful application, which accepted ADHD to be a disability, the Appeals Officer, at the request of my Office, granted full retrospective payment.)
The SAMO's opinion that ADHD is not a disability appears to be contrary to DCA guidelines issued by the Department of Health and Children which state that
" ... no condition is debarred ..."
"eligibility is determined primarily by reference to the degree of additional care and attention required by the child rather than to the type of disability involved ...".
In this case, and the earlier case, the SAMO appears to be of the opinion that the condition, ADHD, is debarred and he also appears to be using definitions for "disability" and "care" which are not prescribed in the Circular which established the DCA scheme or in any subsequent guidelines issued by the Department of Health and Children.
It is the experience of my Office, from the examination of complaints relating to DCA applications, that a large number of parents of children with ADHD (in all parts of the country) apply for DCA. Some of these are successful while others are unsuccessful. However, it is also the experience of my Office that, in a majority of unsuccessful cases, the common grounds for the refusal of applications are that the children do not require a level of continual or continuous additional care and attention that is in excess of that required by another child of the same age. The fact that DCA has been awarded in respect of other children with ADHD indicates that, in other Community Care areas, the SAMOs involved in the decision making processes do consider ADHD to be a disability. When the HSE was established, one of its stated objectives was to ensure consistency in the provision of services through the country. Given the apparent inconsistency in how medical officers in different Community Care Areas categorise ADHD, and the obvious negative consequences for people like Ms Kelly, the indications are that, in relation to DCA, this objective has not yet been achieved.
In his report to the Area Administrator, the SAMO also referred to a confidential psychological assessment of Paul by the National Educational Psychological Service (NEPS). In his report the SAMO stated that
"the NEP report essentially places his intellectual appetite in the normal range although he was found to have specific learning difficulties (erroneously referred to in the report as specific learning disability). These difficulties are amenable to resolution through the education system".
The psychological assessment to which the SAMO referred was prepared primarily for education purposes - the very first line states
"Paul was referred because of continuing concerns regarding his behaviour and school performance"
and all the recommendations in the report are directed at his education providers. It is clear from the report that it is not intended to be a comprehensive psychological assessment of the child : it is an assessment of his educational needs. While the SAMO has relied on the NEPS report which places Paul's intellectual appetite in the normal range, he did not refer to an AMO report dated 29 April 2005 in which it was reported that, according to Paul's Learning Support Teacher, he was
"average IQ but falling behind because of his behaviour"
and that, according to his Special Needs Assistant, he was
"making a reasonable amount of educational progress but his behaviour is affecting his overall ability to learn and his behaviour in class is at times affecting other pupils in the class ... ".
The question of the level of Paul's intellectual functioning is not relevant in this case and it had been recorded previously that he was believed to be of average IQ. In this case, the stated disability, at the time of the application for DCA, was ADHD.
As provided for in DCA guidelines issued by the Department of Health and Children, the allowance is intended as a recognition of the additional burden involved in caring for children with a severe disability in the child's home. The HSE file, which contains all of the evidence upon which the decision in this case was made, contains evidence of the diagnosis of severe ADHD and ODD by a Consultant Child Psychiatrist with the HSE's Child and Family Centre, Ballyfermot (and Professor Child & Adolescent Psychiatry). The file also contains a large amount of information from the Consultant Child Psychiatrist, Paul's school, Paul's mother and AMOs about the many problems that exist as a result of his condition and also about the level of care and attention he requires as a consequence. It is noted that, in his report to the Area Administrator, the SAMO stated
"Although [Paul] requires a good deal of extra attention from his parents to manage his difficult behaviour, he does not require extra care and attention in the context of disability.".
If ADHD was to be accepted to be a disability, as it is accepted by SAMOs in other HSE areas, then the above statement by the SAMO would to my mind, clearly suggest that Paul should qualify for DCA.
Complaint from Ms Geraldine Smith
Throughout the course of my examination of this case, the SAMO consistently held the view that Matthew's disability was not severe and that he, therefore, was not medically eligible for DCA. In this connection, there is a record on the HSE file which shows that, in July, 2002, an Area Medical Officer (AMO) wrote to Matthew's Consultant Paediatrician attached to the Central Remedial Clinic, in relation to his condition. In that letter the AMO referred to an earlier report from the Consultant Paediatrician which mentioned that she was to arrange a further test (gait analysis) for Matthew in the near future and the AMO requested her to forward a report on the findings to facilitate a decision being made on the DCA application. In her reply dated 10 July, 2002, the Consultant Paediatrician advised the AMO that she did not feel that the outcome of the gait analysis would have any bearing on whether or not Matthew was eligible for DCA. She further advised that Matthew has a
"significant permanent disability and requires considerably more care and attention than a child of his age without it, and I therefore feel he meets the criteria for the Domiciliary Care Allowance.".
In December 2003, Matthew's Consultant Paediatrician said that
"to the inexperienced eye [Matthew's condition] may not appear to be as significant and as disabling as it actually is for him. He requires significantly more care and attention than peers of his age without his condition.".
There is no evidence that the SAMO had sought advice from another person with specialist paediatric training or qualifications to assist him in making an informed decision in Matthew's case. This would have been incumbent on the SAMO given the clearcut conclusion from the consultant dealing directly with the child regarding the level of his disability. When my Office requested that the HSE contact the Consultant Paediatrician and Matthew's Consultant Neurologist, to ascertain how Matthew's condition actually impacted on him, and the care and attention he required, it failed to do so.
According to the HSE file, Matthew had been examined by AMOs (i.e. HSE doctors) on three occasions; once in relation to the 1995 application and twice in 2002 in relation to the later application and subsequent appeal. The AMO reports, particularly those from 2002, are very comprehensive and contain Matthew's medical and developmental history, the findings of physical examinations of him and, crucially, comprehensive details of the extra care and attention that he requires. However, it is noted that neither of these doctors had expressed their own professional opinions as to whether they considered Matthew to be medically eligible for DCA, to assist the SAMO in making an informed decision, and both reports conclude with notations that the case had been discussed at an AMO meeting and that Matthew had been deemed not medically eligible.
In the course of my investigation of this case, I reviewed a set of guidelines that have been prepared and implemented in the former Southern Health Board area since May 2004. The guidelines were prepared by a task group comprising SAMO's, AMO's and senior administrative staff from the SHB. Contributions were also made by various other professionals and service providers. Essentially, the guidelines were designed to ensure consistency in the handling of DCA applications and, in this regard, they provide guidance to all those involved in the decision making process. [In the introduction to the Guidelines it was noted that the recommendations of the task group were to form an interim response to the administration of the DCA scheme pending the reporting of the Medical Review Group at National level. It was the group's view that their document - the Guidelines - should be forwarded to the National Group to be taken into account during their deliberations]
I noted that in one particular section of the guidelines entitled "The Medical Assessment - Role of the AMO", AMO's are required to complete a very comprehensive standard medical assessment form, which includes details of the extra care and attention or supervision. The guidelines also require that
"On completion of the medical assessment the AMO recommends or does not recommend DCA for the applicant ...".
It appears to me that if the AMOs in this case had included, in their written reports, their professional opinion as to whether Matthew was entitled to DCA or not, and outlined their rationale for that opinion, then the reasons behind the decision to refuse Matthew's application may have been more obvious. As things stand, when decisions were made in Matthew's case, no individual doctor (AMO or SAMO) had actually recorded such an opinion on the HSE file, and neither was the rationale for the decision outlined.
As mentioned earlier, on a number of occasions during the course of the examination of this complaint (i.e. almost 5 years), my Office obtained medical and other evidence which had not previously been seen or considered by the HSE. This was forwarded to the HSE with requests for Matthew's case to be reviewed and, on each occasion, I was informed that there was no new information in relation to Matthew's condition that was not already documented on his file. In all that time, the HSE had never considered the question as to whether it would be appropriate for Matthew to be medically re-assessed. Instead, the SAMO, who had been involved in the case throughout, and who never actually met or physically examined Matthew, considered each additional piece of evidence individually and determined that it did not impact on the original decision.
Having reviewed all of the evidence that has been provided to the HSE since Matthew's mother first applied for DCA, including that contained in the various AMO reports, it appears to me that there is evidence that Matthew has a severe disability (see paragraphs 5.3.2. and 5.3.5). There is overwhelming evidence that, as a result of that disability, he has required and