0 0 Tithe an Oireachtais

Report on Attention Deficit Disorder in Ireland

Item Type Report

Authors Houses of the Oireachtas, Joint Committee on Health and Children

Publisher Houses of the Oireachtas, Joint Committee on Health and Children

Download date 07/10/2021 06:38:09

Link to Item http://hdl.handle.net/10147/241714

Find this and similar works at - http://www.lenus.ie/hse 0 0 TITHE AN OIREACHTAIS

HOUSES OF THE OIREACHTAS

An Comhchoiste um Shhiinte agus Leanai

The Joint Committee on Health and Children

, Tuarascail ar Neamhord Easnaimh Aire in Eirinn 0 Report 0 on

D Attention Deficit Disorder in Ireland 0

0 Aibrean 1999 0 April 1999 Table of Contents

List ofTabies iv

List of Figures VI Foreword and Acknowledgements vii Proceedings of the Joint Committee viii 1. Aim ofthe report 1

2. Recommendations 2 2.1 General Recommendations 2 2.2 Recommendations regarding diagnostic services for persons with ADD/H 3 2.3 Recommendations regarding treatment services for persons with ADD/H 4 2.4 Recommendations regarding educational services for persons with ADD/H 5 2.5 Recommendations regarding the education of professionals in the medical 6 psychological, educational, and vocational services in the area of ADD/H

3. Literature Review of Attention Deficit Hyperactivity Disorder 7 3.1 Definition of ADHD 7 3 .2 Diagnosis and Treatment of ADHD 11 3.3 Non-StimulantTreatment 14 3.4 Adult ADHD 14 3.5 Swrunary of Literature Review 16

4. Objective One Current Service Provision in Ireland 17 4.1 Government Documentation 17

4.2 Our Lady's Hospital for Sick Children, Crumlin 23 4.3 Evaluation of the ADDIH Service provided at Our Lady's Hospital, Crurnlin 25 4.4 Temple Street Hospital 36 4.5 Neurodevelopment Clinic 37 4.6 Private Services 38 4.7 Summary of Objective One 41

; . *** eettt • 5. Objective Two Current Service Provision in the US and the UK 44 5.1 US Situation 44 5.2 UK Situation 49 5.3 Summary of Objective Two 51

6. Objective Three Others providing services to persons with ADDIH in Ireland 52 6.1 Educational Psychologist working in schools 52 6.2 The Services of a remedial and resource teacher 54 6.3 Review of college prospectuses for teacher training colleges and universities 56 6.4 Summary of Objective Three 57

7. Objective Four Medical personnel who specialise in the field ofADDIH 58 7.1 Interviews with medical personnel 58 7.2 SwnmaryofObjective Four 59 .

8. Objective Five ADDIH Support Groups in Ireland and a survey offamily needs 60 8.1 Support Groups 60 8.2 Needs of families with ADDIH 62 8.3 Needs of adults with ADDIH 88 8.4 Summary of Objective Five 100 8.5 Case Studies 10 I

9. Objective Six Vocational Programmes for persons with ADDIH 105 9.1 Y outhreach Services 105 9.2 Summary of Objective Six I 08

10. Objective Seven Use ofDrugs in Ireland for the treatment ofADDIH 109 10.1 Use of drugs in Ireland for the treatment of ADDIH 109 10.2 Use of drugs in the US for the treatment of ADD/H 113 I 0.3 Use of drugs in the UK for the treatment of ADDIH 114 10.4 Summary of Objective Seven 115

~ 11. Objective Eight, Nin~ Ten Specialist ADDIH training 116 12. References 117 13. Appendices Appendix A- Evaluation questionnaire 121 Appendix B - Letter of Information and Consent 127 Appendix C- ADD/H Parents Questionnaire 129 Appendix D- ADD/H Adults Questionnaire 134 Appendix E .- Meeting ofthe Joint Connnittee on Health and Children, 25 February 1999 with Attention Deficit Disorder MidWest Support Group 139 Appendix F- Members of the Joint Committee 153 Appendix G - Orders of Reference of the Joint Committee 155

iii L List of Tables ·

Table 1: Age of children 65 Table 2: Number and percentages of those attending primary school, 65 secondary school and other Table 3: Breakdown of 'other' category 66 Table 4: Age at which a problem was first noticed 66 Table 5: Age problem first presented to a professional 67 Table 6: Number and percentages of diagnoses received 68 Table 7: Number and percentage of children diagnosed by different - 68 professionals Table 8: Number and percentages of diagnoses received in Ireland 69 and the United Kingdom Table 9: Comparison between the age problem first presented to a 70 professional and age at diagnosis Table 10: Number and percentages of children whose needs are effectively 71 met by the school system Table 11: Number and percentage of children receiving an 72 additional service Table 12: Number and percentages of children receiving different 73 types of services Table 13: Level of satisfaction with additional services 73 Table 14: Number and percentage of children who have contact with professionals 74 Table 15: Types of p :essionals children have contact with 75 Tablel6: Number and percentage of children receiving medical treatment 75 Table17: Number and percentage of children taking different t)'lJes of medication 76 Table 18: Number and percentage of those who find medical treatment beneficial 76 Table 19: Future availability of services 78 Table 20: Service providers 80 Table2L Number and percentage of parents who attend a support group 80 Table 22: Comments on the support groups 81 Table 23: Number and percentage of children attending a support group 81

~····· Table 24: Comments regarding children attending a support group 82 Table 25: Reported level of public knowledge 83 Table 26: How can knowledge be increased 85 Table 27: Number and percentage of participants reporting an impact on family life 85 Table 28: Age of participants 90 Table 29: Age first problem noticed 90 Table 30: Age problem first presented to a professional 91 Table 31: Number and percentage of diagnoses received 91 Table 32: Who made the diagnosis? 92 Table 33: Number and percentage of diagnoses received in Ireland and the 92 United Kingdom Table 34: Comparison between age problem presented to a professional and 92 age of diagnosis Table 35: Does the school system effectively meet your needs? · 93 Table 36: Number and percentage of participants receiving an additional service 93 Table 37: Number and percentage of respondents who have contact 94 with professionals Table 38: Professionals contacted by respondents 94 Table 39: Number and percentage of respondents receiving medical treatment 94 Table40: Future availability of services 96 Table 41: Service providers 97 Table42: Number and percentage of participants attending a support group 97 Table 43: Reported level of public knowledge 98 Table 44: Number and: percentage of respondents reporting an impact on 99 family life

~ List of Figures

Figure l: Experience of financial burden due to the child's disorder before 31 and after attending the ADHD Service Figure 2: Experience of child's behaviour disrupting activities before 31 and after attending the ADHD Service Figure 3: Burden on recreational activities due to the child's disorder before 32 and after attending the ADHD Service Figure 4: Neighbours stopped visiting due to the child's behaviour disorder 33 before and after attending the ADI·ID Service

Figure 5: Family relations due to the child's disorder before and after attending 33 the ADHD Service Figure 6: Health burden due to the child's disorder before and after attending 34 the ADHD Service

'X I A!

Foreword and Acknowled~ments

The Joint Committee on Health and Children was established in November 1997. Following a proposal from Senator Mary Jackman, the Joint Committee decided to examine Attention Deficit Disorder and appointed the National Research Agency Ltd. as consultants for the purpose of this report. Senator Mary Jackman acted as the Joint Committee's liaison with the consultants.

The report was considered the Joint Committee at its meetings on 25 February 1999 and 25 March 1999. The report, as amended, was agreed.

The Joint Committee is grateful to the National Research Agency Ltd. for their efforts in preparing this report. The Joint Committee would also like to express its particular appreciation to Senator Mary Jackman for the key role played by her in the conception and production of this report.

The Joint Committee would like to thank all those adults with ADDIH, parents of children with ADD/H and professionals working in the area of ADDIH who contributed to this report for their generosity with information. The Joint Committee is also very grateful to Dr. Deirdre Killelea, Clinical and Educational Psychologist, and Prof. Michael Fitzgerald, Trinity College Dublin, for their invaluable assistance.

-1~~ Batt O'Keeffe i Chairman

l2-April1999

Vll n 6& AN COMHCHOISTE UM SHLAlNTE AGUS LEANAi

THE JOINT COMMITTEE ON HEALTH A.l'ID CHILDREN

Imeachtai An Chombchoiste

Proceedings of the Joint Committee

De Deardaoin, 25 Marta, 1999

1. The Joint Committee met at 9.30 a.m. in Room G2, Kildare House.

2. MEMBERS PRESENT.

The following members were present:

Deputies Batt O'Keeffe (in the chair), Michael Ahem, Paul Bradford, Deirdre Clune, Paul Connaughton, John Gormley, Cecilia Keaveney, Liz McManus, Dan Neville and Alan Shatter. Senators Camillus Glynn, Mary Jackman and Pat Moylan.

3. DRAFT REPORT ON ATTENTION DEFICIT DISORDER (RESUMED)

Consideration of the Report on Attention Deficit Disorder, brought forward by Senator Mary r Jackman, was resumed. Tile Report was read and amended. The Report, as amended, was agreed.

Ordered: To report accordingly.

4. ADJOURNMENT

The Committee adjourned at 10.15 a.m. until Thursday 22 April.

viii

·+m: .. L Aim of the Report

1. Aim of the Report

The aims of this report were as follows: • The primary aim of the study was to establish the need for new services, medical, psychological and educational for children and adults with ADD/H.

• Secondly the study also aimed to determine the extent of psychiatric, psychological, educational, and vocational services throughout Ireland, both outpatient and residential for children and adults with ADD/H.

• Thirdly the study aimed to investigate the extent of expertise in the medical, psychological, educational and social services in Ireland.

The report conunences vvith the overall study reconunendations. The reconunendations are presented at this stage due to the extensive nature of the report. This section is followed by a review of the literature pertaining to attention deficit disorder (ADD) or attention deficit hyperactivity disorder (ADHD) including (a) the definitions of the disorder, (b) the diagnosis, prevalence, and treatment ofthe disorder including behavioural treatments and (c) adult ADD/H. The following sections correspond to the study objectives.

• Objective one was concerned with the current service provision in Ireland for persons with the disorder and co-existing conditions. • Objective two was concerned with the provision of services for person with ADDIH in the UK and the US. • Objective three involved an investigation of those providing services to persons with ADDIH in Ireland (including teachers, teacher-training colleges, youth services).

• Objective four was concerned with medical personnel specialising in the field of Attention Deficit Disorders. • Objective five investigated the needs of families of persons with ADD/H. • Objective six was investigating the level of educational provision for persons with ADD/H. • Objective seven was investigating the situation regarding medications for persons with ADD/H. • Objective eight, nine and ten were concerned with the qualifications of those likely to encounter children and adults with ADDIH, including teachers, and GPs. Recommendations

2. Recommendations This section begins with a general outline of the main study findings followed by an account of specific reconunendations.

2.1 General Recommendations There is genetic and neurological evidence that ADDIH has a biological basis. ADDIH affects

approximately 5-l 0% of the general population ~ed on the criteria published in the Diagnostic and Statistical Manual of the American Psychiatric Association.

There is a severe under-recognition and under-diagnosis of ADD/H in Ireland by health and educational professionals. This is causing huge stress to children, families and adults with ADD/H. A support group for families of persons with ADDIH in Cork received over 1100 calls in two months. There is a serious lack of services for children and families with ADD/H and a total absence of services for adults with ADD/H. Untreated children and adolescents with ADD/Hare at a serious risk of social and emotional problems, including conduct problems, school expulsion, learning failures, delinquency, substance abuse and even imprisonment. Untreated adults with ADD/H are at a serious increased risk of occupational failure, marital breakup, financial problems, gambling, drug and alcohol abuse and other psychiatric problems. There is an extreme lack of professional training in all disciplines v.--ith responsibility for the diagnosis, treatment and education of individuals with ADD/H.

It is now absolutely clear that many members of the Oireachtas are being lobbied by constituents about the neglect of persons with ADDIH, that is, lack of diagnosis and services for many people throughout Ireland. £30,000 needs to be made available for a national prevalence study of ADD/H

~ ;~,·· · -.....: ...... ''!i>* .., -~-..!. ~-- Recommen~ons

2.2 Recommendations regarding diagnostic services for persons with ADD/H

1. There is a need for extensive diagnostic ADDIH centres located in different reg1ons. It is evident from the report that quite a large number of children wait for five to eleven years for a diagnosis of ADDIH after parental identification of problems. Moreover many families are spending thousands of pounds travelling to the UK for ADD/H services.

2. Diagnostic centres need to be available for adults.as there is no adult ADDIH service in Ireland and research has revealed that one-third of children diagnosed with ADD/H meet the criteria for adult diagnosis. As revealed in the report one adult waited 15 years for a diagnosis. -. 3. Adult psychiatrists in each health board region need to take an interest in and develop 6 expertise in the area of adult ADDIH and undertake an outpatient clinic. Otily one adult with ADDIH in this study was in contact with a medical professional.

4. ADD/H services for children and adults need to be made available by the health boards. Parents of children with ADDIH and adults with ADDIH should not have to pay for diagnostic services privately.

5. Diagnostic centres for children and adults with ADDIH need to be available to young children since early diagnosis is essential to successful treatment.

6. ADDIH diagnostic services should be comprised of a multi-disciplinary team of professional including psychiatrists, neurologists, paediatricians, clinical and educational psychologists.

7. ADDIH diagnostic services need to be equipped with the necessary assessment materials, including psychological tests and computerised tests of attention.

3 Recommendations

2.3 Recommendations regarding treatment services for persons with ADD/H

I. There is a need for extensive treatment centres for children and agults vvith ADU/H located"' in different health board regions of the country. Such treatment centres would exist alongside the diagnostic centres.

2. Treatments for children and adults with ADDIH need to be multimodal in nature comprising behavioural and cognitive treatments and medical treatments.

i 3. The Irish Medicines Board need to approve a far greater number of medicines that are not ~ available at present. ]his lack of approval is seriously undermining the provision of adequate internationally recognised treatments for many persons with ADD/H. Medications have been unequivocally shown to reduce the core symptoms ofhyperactivity, impulsivity and inattentiveness. Classroom behaviour and academic performance has been shown to improve following medication. Medications also reduce oppositional and aggressive behaviour. In this study parents noticed that their child's behaviour problems had diminished since the introduction of medication.

4. The drug Ritalin needs to he available on prescription to adults with ADD/H. ~

5. The diagnostic and treatment service for children with ADDIH at Our Lady's Hospital for.::t Sick Chifdren, Crumlin need to be extended inftder to cope with the large number of persons currently on waiting lists for neurological and psychological assessment.

.._j

~ ~~~~S-<::";?''~··· · t . JM~t .• ~~ Recommendations

2.4 Recommendations regarding educational services for persons with ADD/H

1. There needs to be specific educational services for persons with ADD/H. In the US children with ADDIH qualify for special educational and related services when ADDIH impairs educational performance. In this study, parents of children with ADD/Hand adults with ADDIH reported that the current Irish school system did not meet their needs. Parents should not have to rely on the goodwill of individual teachers and school principals.

2. Children with ADDIH in mainstream schools need access to remedial and resource teachers specifically trained in the area of ADD/H.

3. Children with ADD/H in mainstream schools need structured tailor-made activities and concrete learning experiences preferably by a teacher trained in the area of ADD/H. The current school and exam system in Ireland does not suit individuals with ADD/H.

4. A school specialising in ADD/H needs to be provided for children with severe ADDIH who cannot cope in mainstream schools. Children in this study have been expelled from schools and parents were obliged to take legal proceedings to ensure their child received an education. This school should be based on the Center Academy in London, a specialised day school for children with ADD/H.

5. Youthreach centres need to provide services to adolescents and young adults with ADD/H in keeping with the recommendations outlined in A National Educational Psychological Service, Report ofthe Planning Group, 1998, which stated that Youthreach centres should be able to provide psychological services to its clients.

5 Recommendations

~ 2.5 Recommendations regarding the education of professionals in the medical, psychological, educational, and vocational services in the area of ADDIH

I. There is a need for widespread education and Continued Professional Development (CPD) in the medical fields. It is clearly evident in this study that many professionals had no precise training in the area of ADDIH, knowledge was gained through experience and many years of working with persons with ADD/H.

2. Teacher training colleges and educational institutions offering Higher Diploma in Education courses need to train teachers how to recognise and cope with ADDIH in the classroom.

3. There is also a need for continued professional development in teaching services through in-service training, lectures and conferences.

4. Psychology courses also need to specifically provide courses in the assessment and diagnosis of ADDIH in children and adults.

5. Staff providing vocational services to persons with ADDIH need to be trained in the area of ADD/H including behaviour management techniques.

6. There is a need for research into ADD/H to be conducted in Ireland. This will also serve as a mechanism to heighten awareness about the disorder among medical and educational professionals.

~,_, ___"':' --- ~, ~~;;; ~!':' ~, Literature Review of ADD/H

3. Literature Review of Attention Deficit Hyperactivity Disorder

In this section the disorder is defined, issues surrounding the diagnosis and treatment of the disorder are examined, and the concept of Adult ADDIH is discussed.

3.1 Definition of ADHD In 1980 the diagnosis of Attention Deficit Disorder was first recognised in the Diagnostic and Statistical Manual, 3rd Edition (DSM ill)- the official diagnostic manual of the American Psychiatric Association (APA). ADD is characterised by the attention skills that are developmentally inappropriate, impulsivity, and, in some cases, hyperactivity. ADD is defined as a neurobiological disability that affects up to 5% of American children. Characteristics of children with ADD can include the following and often arise in early childhood: • Fidgeting with hands or feet r • Diffieulty remaining seated • Difficulty follo-wing through on instructions • Shifting from one uncompleted task to another • Difficulty playing quietly • Interrupting conversations and intruding into other children's games • Appearing not to listen to what is being said • Doing things that are dangerous without thinking about the consequences The above behaviours must last at least six months with onset before age seven.

Attention deficit hyperactivity disorder (ADHD) or Hyperkinetic Disorder (HKD) has previously been called minimal brain damage, minimal brain dysfunction, and hyperactivity and the name has changed as our understanding ofthe disorder has broadened. Without the hyperactivity, the condition is called Attention Deficit Disorder (ADD). Like most psychiatric disorders, ADHD is defined by a set of behavioural characteristics of which no single one is diagnostic.

The specific diagnostic criteria for ADHD are in the American Psychiatric Association's Diagnostic and Statistical Manual (DSM-IV, 1994) and those for HKD are in the International Classification of Diseases manual (ICD-1 0, 1992 and 1993) published by the World Health Organisation. DSM-IV describes three types of attentional disorder: (a) Attention Deficit/Hyperactivity Disorder, Predominantly Inattentive Type, (b) Attention Deficit/Hyperactivity Disorder Predominantly Hyperactive-Impulse Type, and (c) Attention-

&H! Literature Review ofADDIH ..-I

Deficit Disorder, Combined Type. Different professional interpretations of the symptoms have been taken, but according to Fosner & Raichle (1994) these differences may be primarily

semantic. "After decades of operational definitions, DSM and ICD manuals in ~eir most recent versions (AP A, 1994; WHO, 1993) now recognise the same problem as the basis of the diagnosis, in almost identical sets of 18 symptoms. However, there are still major differences in decision rules (Swanson et al., 1998). The primary difference between the decision rules is that HKD is a subset of ADHD in ICD-1 0 and can be used to identify a refined phenotype. DSM-IV, on the other hand, aims to recognise as many diagnoses as there are symptom patterns. The DSM-IV classification is outlined below. - The Diagnostic and Statistical Manual, 4th Edition (DSM-IV), published by the American Psychiatric Association describes characteristics frequently found in persons with ADD1 _j A. Either (1) or (2): Inattention: At least six of the following symptoms of inattention have persisted for at least six months to a degree that is maladaptive and inconsistent with developmental level: (a) often fails to give close attention to details or makes careless mistakes in schoolwork, work, or other activities (b) often has difficulty sustaining attention in tasks or play activities (c) often does not seem to listen when spoken to directly (d) often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace (not due to appositional behaviour or failure to understand instructions) (e) often has difficulty organising tasks and activities (f) often avoids, dislikes, or is reluctant to engage in tasks that require . sustained mental effort (such as schoolwork or homework) (g) often loses things necessary for tasks or activities (e.g., toys, school assignments, pencils, books, or tools) (h) is often easily distracted by extraneous stimuli (i) is often forgetful in daily activities

Hyperactivity-Impulsivity: At least six of the follovving symptoms ofhyperactivity impulsivity have persisted for at least six months to a degree that is maladaptive and inconsistent with developmental level:

1 Reprinted from DSM - IV, American Psychiatric Association, pages 83-84.

~...... »';·'·""'··:· :::~:'"' if ·······.;x:.""'""""' Literature Review of ADDIH

Hyperactivity (a) often :fidgets with hands or feet or sqJ.linns in seat (b) often leaves seat in classroom or in other situations in which remaining seated is expected (c) often runs about or climbs excessively in situations where it is inappropriate (in adolescents or adults may be limited to subjective feelings of restlesssness) (d) often has difficulty playing or engaging in leisure activities quietly (e) is often "on the go" or often acts as if"driven by a motor" (f) often talks excessively Impulsivity (g) often blurts out answers before questions have been completed (h) often has difficulty waiting turn (i) often interrupts or intrudes on others (e.g., butts into conversations or games)

The above is not meant to be used as a simple checklist. A careful developmental history and observation are used to define a general pattern of behaviour suggestive of ADliD. All children may be inattentive or exhibit high levels of activity, however, for children with ADHD, the persistence, pattern, and frequency of this behaviour is much greater.

Attention Deficit/Hyperactivity Disorder (ADHD) is one of the most common psychiatric disorders in childhood. n is highly prevalent, interferes with development in a variety of areas and is relatively persistent across settings such as home, school and leisure time activities.

Its impact on society is enormous in terms of :financial costs, the stress to families, the impact on academic and vocational activities, as well as the negative rebound effects on self esteem

(Biederman et al, 1996). Approximately four per cent of adults are estimated to have ADD~ and as is the case with many children with ADDIH, adults with ADD report problems with making and maintaining friendships and uneven interpersonal relations. In young children \Nith ADDIH, over 50 per cent are reported to have significant problems in peer relationships (Barkley, 1994).

The persistent inability to concentrate, multiple failures, disapproval and demoralisation may contribute to low self-esteem. Recent studies confirm that ADD is commonly associated not

9 -...--

Literature Review ofADDIH

only with antisocial disorders, but also with anxiety and depressive disorders (Biedennan et al., 1993). For example, adults may report social difficulties: peer, family, marital, and job-related problems. Social and interpersonal relationship problems can also contribute to deep-rooted feelings of loneliness, demoralisation and depression.

There is good evidence that ADHD, like other psychiatric disorders such as depression, has a biological basis. Biederman et al. ( 1990) reported that ADHD is strongly familial. Evidence can be seen from studies showing that hyperactivity is more common in the biological parents than it is in the adoptive parents of ADIID children. Twin studies by Gillis et al., q992) and adoptive studies (Alberts-Corush et al., 1986) suggest that familiarity may be due partly to shared genes.

New research by scientists at Trinity College Dublin (Gill et al., 1997) has confirmed that sufferers from ADHD have a genetic abnormality causing the condition. l)le research by Trinity's Department of Genetics and Psychiatry was conducted with 49 Irish ADHD patients and their parents. The scientists found a hereditary variation in the Dopamine transporter gene, causing an abnormality of neurotransmission in the brain. The research also revealed that methods of treatment using_psycho-stimulant drugs, such as Ritalin, are likely to be "on the right track". "Research might go some way to reduce parents' guilt by knowing there is a genetic problem.

Results from a landmark study conducted by Alan Zametkin, MD, and his colleagues at the National Institute of Mental Health showed that the rate at which the brain uses glucose, its main energy source, is lower in subjects with ADD/H than in subjects without ADD/H (Zametkin et al., 1990). Even though the exact cause of ADDIH remains unknown, we do know that ADDIH is a neurological-based medical problem and is not caused by poor parenting or diet.

As mentioned earlier, ADDIH is the most common psychiatric disorder of childhood. It affects

three to ten per cent of school age children and like most other psychiatric disorders, it is muC: more common in boys. The sex ratio is at least three to one and as adults, they are more likely to suffer from alcoholism and antisocial personality.

--1

':)';.. ~.)$'(U~ ,.J. :tU $ £.- ,....t:"w~~Ht~~ Literature Review of ADDIH

3.2 Diagnosis and Treatment of ADHD Diagnosis is a multifaceted process and a comprehensive assessment is necessary to rule out - other causes and also to detennine the presence I absence of co-occurring conditions. The symptoms of ADHD begin early and the disorder usually becomes obvious by the age of two or r three. However, at all ages it is important to seek evidence of other conditions. Due to a combination of empirical research findings and expert committee consensus, there have been successive changes in diagnostic criteria, which have resulted with the DSM-IV criteria, which emphasises several factors. A firm diagnosis is only reached after a comprehensive multi modal investigation. Those involved in such an investigation include the parents, the child's teachers and the family doctor. A psychologist usually refers a patient to a consultant paediatrician or consultant psychiatrist, who makes the final diagnosis and who may prescribe a medication.

According to S"'-anson et al., (1998) a large part of the difference in prevalence rates in different countries is due to the definitions used and not from geographical differences. The prevalence of ADHDIHKD using DSM diagnostic criteria is about 5-10% ofthe general population whereas this frequency drops to l-2% with the ICD tradition, which restrict -. diagnosis to the full syndrome with limited comorbidity,£Swanson et al., 1998). Prevalence rates have been affected by access to services, tolerance of symptoms, the marketing of medications and the actual presence of symptoms. A change in the educational regulations in the US in 1990 contributed to the doubling of the administrative prevalence of ADHD over a 3- year period (Swanson et al., 1996). A reintroduction ofthe drug methylphemdate in the UK after an absence of l 0 years contributed to a rapid increase in the administrative prevalence of HKD in the UK.

As outlined earlier the symptoms specified in the criteria must be present for at least six months, ensuring that persistent rather than transient symptoms will be included. The symptoms must be "maladaptive and inconsistent with developmental level". Tills ensures that the symptoms are of sufficient severity to cause problems and that the child's age and neurodevelopment are considered in evaluating symptoms.

According to Hinshaw et al., (1997) the diagnosis of ADHD and HKD are based on clinical

history and although used by professionals neither psychological or biological tests are recommended for clinical use (DSM-IV and ICD-1 0).

11 Literature Review of ADDIH

The symptoms must be present across two or more settings, for example, school and home. _l Taken as a whole, these criteria require an illness pattern. that is enduring and has led to impairment. To make this diagnosis appropriately, the clinician must be familiar with normal development and behaviour and gather information from several sources to evaluate the child's S)mptoms in different settings. This helps to distinguish children with ADHD from unaffected children, whose parents or teachers are mis-labelling normal behaviours as pathological. When the DSM-IV criteria is followed correctly, it demonstrates high reliability and reduces the numbers of false-positive diagnoses.

Thus, the overall approach to diagnosis may involve;

(1) A comprehensive interview "vith the child's adult caregivers.

(2) A mental status examination of the child.

(3) A medical evaluation for general health and neurological status. (4) A cognitive assessment of ability and achievement.

(5) Use of ADHD-focussed parent and teacher rating scales.

(6) School reports and other adjunctive evaluations if necessary (speech, language·assessment, etc) depending on clinical findings.

Treatment should include consideration of at least the following;

(1) Education about ADHD for the parents and the child.

(2) Medication for the child.

(3) Remedial or special education where necessary.

(4) Behavioural and Cogntive Therapy

The stimulant medications Dextroamphetamine (Dexedrine) and Methylphenidate (Ritalin) are the main specific treatments for ADI·ID. Methylphenidate, created in 1955, now accounts for

more than 90 per cent of the stimulant use in ADHD in the United States. Many experiments ..-' comparing the two drugs with placebos have shown that they produce moderate to dramatic

improvement in about 75 per cent of children ~ith ADHD. Why only 75 per cent respond favourably is not understood, but the responses suggest that ADHD, like depression, is a complex disorder with multiple causes. In general, methylphenidate and dextroamphetamine are equally effective, but some children do better on one and some on the other.

I _; There have been more than 170 studies involving more that 6,000 school-aged children using stimulant medication for ADHD. The response rate for any single stimulant drug in ADHD is

,.'#·. ,.flhwt= J&,A$ *' 4$1\WX(Wst:h.· W:X#,·k Literature Review ofAPDIH approximately 70 per cent, and up to 90 per cent of children will respond to at least one stimulant without major adverse events if drug titration is done carefully.

Medications have been unequivocally shown (i.e. by double-blind, placebo-controlled studies) to reduce core symptoms of hyperactivity, impulsitivity and inattentiveness. They improve classroom behaviour and academic performance, diminish appositional and aggressive behaviours, promote increased interaction with teachers, family and others and increase participation in leisure time activities. Finally, stimulants have demonstrated improvements in irritability and anxiety. A recent meta-analysis found that the effect of stimulants on behaviour and cognition maybe several-fold greater than the effects on academic achievement.

For patients with ADHD who are intolerant of or unresponsive to stimulants, a number of other drugs have proven useful in clinical practice, including tricyclic anti-depressants and bupropion hydrochloride, a newer anti-depressant that blocks the re-uptake of norepinephrine and dopamine.

Swanson et al. ( 1998) published a careful review of all review· studies of stimulant use in . children in 1993. He found overwhelming evidence for temporary improvement of c9re symptoms (hyperactivity, inattention and impulsitivity), as well as the associated features of defiance, aggression and negative social skills. Children should be re-evaluated periodically, while not taking medications to see if the medications are still appropriate and necessary.

The secondary benefits of the drugs are predictable. The child becomes capable of working and playing with others, does better in school, wins more praise and less criticism. There is a decrease in the long-term risk of academic underachievement and psychological maladjustment. Although children with ADHD alone tend to learn more readily while taking stimulants, they may also need remedial work The drugs have no direct effect on academic skill disorders, but may make children with both ADHD and learning disabilities more amenable to special education.

13 ._...

Literature Review ofADD/H

3.3 Non-Stimulant Treatment Non-medication approaches to the treatment of ADD/H include the following:

• parent education about the disorder

• parent management training (contingency management in individual or group settings; this technique decreases disruptive behaviour, increases parents' self confidence and decreases family stress) • classroom I environmental manipulations (special class, seating in class, etc) • contingency management and daily report cards by teacher • individua_l psychotherapy for depression, anxiety and low self-esteem • impulse control and social skills control training.

Children with ADHD perform most effectively when tasks are tailored for them. These children tend to favour the concrete experience learning style and the active style. These are most useful in circumstances, where tasks are experiential in nature, where the learning emerges from doing. The tendency for schools, however, is to focus on tasks which are essentially reflective and abstract, demonstrated by the literary form in the curriculum and public examinations.

The school for the ADHD child should meet certain essential requirements: have smaller classes, structured activities, flexibility, remedial facilities, monitoring of drug therapy, and a \vide choice of subjects examination aids for particular disabilities. These children need access to proper resources.

3.4 Adult ADHD Until recently, most child psychiatrists believed that ADD/H diminished in adolescence and disappeared in adulthood. Follow-up studies have shown this to be untrue. ADHD persists into adulthood in ten per cent to 60 per cent of childhood onset cases (Hechtman, 1992). In spite of this, little attention has been paid to the adult affliction of this disorder. It's high

prevalence in childhood, combined \Vith the follow-up results, suggests that ~proximately two to four per cent of adults may suffer from ADHD, yet'irelatively few adults have been treated for ADHD. According to Swanson et al., (1998) "about one-third of individuals with ADHD J diagnosed in childhood still meet the criteria in adulthood, and a diagnosis of antisocial personality emerges in about 20% of those diagnosed as children" (p.429).

"' ~ -·· t;l)(J4 c;::;#$8~~- :W lt#f>. ."*'!@ !9sa s: V% W *«: Y: , s wu~·~"""'_" , ...... ~· ··"...,,."""-·• Literature Review of ADD/H

Like their younger counterparts, adults with ADHD have been described as being more aggressive, disruptive, domineering, intrusive, noisy, and socially demanding than those without ADHD (Barkley, 1994). These behavioural characteristics have been associated with peer rejection during the childhood and adolescent years and are likely to contribute to poor relations in the adult years as well.

Attention deficit hyperactivity disorder is a chronic and often serious psychiatric disorder that is identified in early childhood and can persist into adulthood (Gittelman et al., 1985; Wender, 1985). Many adult ADHD patients with eo-morbid depression or anxiety disorders often abuse drugs (Wender, 1985). Fitzgerald (1998) reports that adults with ADHD "can have stormy life passages which often lead them to experience considerable demoralisation and low self-esteem" (p.82). The diagnosis of ADHD is receiving increasing attention in Europe but it is still less frequently diagnosed as compared to the United States. Co-morbidity often occurs in association with ADHD but patients are diagnosed as having a personality disorder or depression and the eo-morbid ADHD is missed (Fitzgerald, 1998).

Diagnosis of ADHD in adults The three core clinical symptoms of attention deficit disorder in adults are outlined below: • The first core clinical symptoms relate to inattention and distractibility. These patients show poor concentration; are unable to complete reading or other cognitive tasks; shifting activities frequently; daydreaming frequently; are easily distracted by external stimuli or events; are distracted by internal thoughts; are forgetful; have problems organising time; pay poor attention to detail and have difficulty listening. • The second core clinical symptom relates to impulsivity and the issues here are impatience; acting without thinking; talking out of turn; having impulsive urges and temper tantrums . . • The third core clinical symptom is hyperactivity and the issues here are having a restless feeling; having motor hyperactivity; having difficulty remaining seated during meetings and meals and having difficulty working quietly.

Murphy & Barkley (1996) point out that DSM-IV criteria may be inappropriately worded for adults and that the diagnostic thresholds could be too stringent when applied to adults resulting in underdiagnosis of the condition. Murphy & Barkley ( 1996) go on to say that ADHD should be diagnosed in adults 'whenever problems with poor inhibition, sustained attention, and restlessness have persisted since childhood and resulted in impairment'. Toone & Van der Linden (1997) have suggested that approximately 0.5o/o- l% of the young adults population

15 ~

Literature Review of ADDIH have symptoms associated with ADHD. Fitzgerald (1998) recommended that one adult psychiatrist in each region develop an interest and expertise in the area and undertake an outpatient clinic also. According to Moore and O'Donovan (1998), there is growing evidence that adult ADDIH is largely treatable. However Moore and O 'Donovan (1998) state that many doctors in this country are unaware ofthe diagnosis of adult ADDIH, with the patients often querying their doctor about it having heard reports of ADDIH through the media. To the knowledge ofMoore and O'Donovan (1998), there is no adult psychiatrist in Ireland currently treating this disorder, and the drug Methylphenidate is not licensed for use in adults in Ireland.

Moore and O'Donovan (1998) report that some sources recommend that there be o~e adult psychiatrist in each area who would take a special interest in the condition thus developing expertise in the area. A dedicated out-patient clinic could then be set up with the specialist providing a wealth of expertise for others.

3.5 Summary of Literature Review • There is genetic and neurological evidence that ADDIH has a biological basis. • A multifaceted diagnosis and assessment of ADDIH has to be conducted to rule out eo- occurring conditions. • The prevalence rates are between 5-10% of the general population using DSM criteria, dropping to 1-2% with ICD diagnostic criteria. • Drug treatment seems to work well in the majority of cases but monitoring is essential • Non-stimulant and behavioural treatments are important for development • Adult ADD/H is almost completely under-diagnosed in this country • There is a need for adult psychiatrist to treat this disorder in adults, however Ritalin is not licensed for use in adults in Ireland.

~ · ~ ~ ~ ·~ c~ ~ "'Y>: ·~····t - -~~ ~... • A~- ~~ ~- ...... ,.;,..,.~, ,_,-:;:;,,,~•"" Objective One

4. Objective One To review the state of current service provision in Ireland for persons with ADD/ll and co existing conditions

This objective is investigated under several headings. Firstly, government docwnentation pertaining to services for children with ADDIH is presented. This is followed by an outline of the public services currently available in Ireland. Finally there is a discussion of some of the private services available to families with ADDIH in Ireland.

4.1 Government Documentation In 1993 a Special Education Review Committee cited the need for: "An expanded School Psychological Service, staffed by psychologists with appropriate qualifications, under the aegis ofthe Department ofEducation and/or the proposed intermediate educational administrative structure, should be established on a countywide basis without delay. An essential part ofits overall jUnction should be to assist primary and post-primary schools in the identification and assessment ofpupils with special needs, including those with disabilities. In setting up these services, priority should be given to areas which do not have adequate services at present".

Although this service did not specifically identify children wi~ ADDIH, it stated the necessity to assess pupils with special needs. However, there is one psychologist to every 18,000 students- Impact Report (1996). The report also states: "The prevention ofdifficulties is preferable to crisis intervention and far more cost effective."

A White Paper on Education- Charting our Education Future (1995) states that: "A major objective will be that a percentage ofthe sixteen-to-eighteen-year-old age group completing senior cycle will increase to at least 90 per cent by the year 2000." Thus highlighting the plan to keep as many students as possible within the school system.

As can be seen from the above, very little provision has been made for students with special needs or disabilities within the school system.

In order to investigate government plans further, a series ofDail Questions were put to the Minister for Health and Children concerning services for children with ADD/H. These

17 Objective _9ne

questions and answers are outlined in the next section. The first question presented was by Jack Wall, TD.

Dail question: To ask the Minister for Health and Children ifhe will report on the extent ofthe incidence of attention deficit disorder or attention deficit hyperactivity disorder; the services available to sufferers and their families; ifhe will make core-funding available to the Irish National Council for attention dejidt disorder or attention deficit hyperactivity disorder support groups; and ifthe will make a statement on the matter. Jack Wall, TD.

The oral answer from Mr. Brian Cowen TD, Minister for Health and Children, on October the 8th 1998 was as follows: Estimates of the prevalence ofAttention Deficit Disorder or Attention Deficit Hyperactivity Disorder vary with the degree or intensity ofdifficulty. Exact figures on the incidence ofthe disorder are not currently available. However, there is an indication that the number ofchildren and adolescents being diagnosed as suffering from the disorder may be on the increase. The diagnosis, assessment and treatment ofattention deficit disorder normally falls within the area ofrespons ibility ofthe child and adolescent psychiatric services in each health board. The development of a comprehensive child and adolescent psychiatric service is each health board area has been identified as a priority in my Department's Health Strategy- Shaping a Healthier Future and a consultant-led service is now available in each health board.

My Department is currently in the process offormulating a policy document for the further development ofchild and adolescent psychiatric services which will include

consideration ofthe specific needs ofchildren and adolescents with Attention Deficit .....o· Disorder and Attention Deficit Hyperactivity Disorder. In the meantime, I have provided additional revenue resources in the current year to enable further improvement to be undertak£n in the child and adolescent services in a number of health boards.

Health boards are developing a mental health service which is comprehensive and community-based and. in line with the Health Strategy, are continually considering ways in which services provided by voluntary and/or private groups might integrate

--.__.,....._.- ..,.,.... .,..,..,; '1""-· " Objective One

with health board services. In the circumstances, I would suggest that the regional health boards be contacted directly by the relev.ant support groups to discuss their needs, includingfonding requirements, and what role the groups might have in the foture development ofservice s in the Boards' functional areas.

A second Dail question by Jack Wall, TD is presented below. Dail question To ask the Minister for Health and Children ifhe will seek funding in the forthcoming Budget to provide Psychologists to assist groups dealing with attention deficit disorder and attention deficit hyperactivity disorder in view oftheir urgent need and the lack offacilities for groups. Jack Wall TD

The written reply from Mr. Brian Cowen TD, Minister for Health and Children, on October the 20th 1998 was as follows: Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD) come within the remit ofthe child and adolescent psychiatric services. Each ofthe health boards now has a dedicated child and adolescent psychiatric service headed by a consultant child psychiatrist.

A review ofchild and adolescent psychiatric services is currently been undertaken by my Department. The special needs ofchildr en with conditions such as Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD) is being examined as part of this review.

The forther development ofch ild and adolescent psychiatric services, including the recruitment ofadditional psychologists, will be considered in the light of the availability offunding in 1999.

A third question was posed by Senator Mary Jackman regarding the prevalence of ADDIH in Ireland, this is presented on the next page.

19 Objective One

Dail Question To ask the Minister, Mr. Brian Cowen TD, Minister for Health and Children for an immediate prevalence study ofADHD in Ireland to be can-ied out so that the serious situation ofADHD sufferers can be addressed. Senator Mary Jackman

The reply from Mr. Brian Cowen TD, Minister for Health and Children, was as follows: As the Senator may be aware estimates ofthe prevalence ofAttention Deficit Disorder or Attention Deficit Hyperactivity Disorder vary with the degree ofintensi ty ofdifficulty. ADHD is an internationally recognised condition ofbrai n dysfunction. It is a complicated and variable condition with many presentations. The combination ofinatt entive, hyperactive and impulsive behaviour in children is recognised as a disorder when these behaviours are severe, developmentally inappropriate and impair functioning at home or at school.

The number presenting to the health boards who require medical care would indicate that the prevalence rate is in line with the international norms at approximately 1 to 3 per cent ofthe child population and is based on criteria for the Disorder contained in the !CD - International Classification ofDiseases .

Definitive Diagnosis As I have pointed out the gradient ofdysfunctional intensity can vary greatly and it is important to seek evidence ofother psychological conditions such as stress disorders, and adjustment reactions before a definitive diagnosis and treatment programme may be undertaken. A physical examination is useful in ruling out issues such as hearing problems or neurological conditions.

Nevertheless, the numbers presenting to the health service may not be representative ofthe level ofchi ldren presenting with ADHD like symptoms and it is crucial therefore that the role of the educational sector is properly recognised with teachers being provided with the necessary skills in identifying a child under stress.

--"

~, ... "*~AM~:C Objective One

National Educational Psychological Service Agency A Department ofEducation and Science Planning Group, on which the Department ofHealth and Children was represented, has just finalised a report on the development ofa National Educational Psychological Service for all schools.

Micheal Martin., TO, Minister for Education and Science detailed a £57 million plan to tackle educational disadvantage on December the 3rc1 1998. The measures in the initiative include the hiring of 450 new teachers for remedial and other disadvantage issues. Of relevance to this study was the report that funding will be made available for a remedial teaching service to every school and a special home/school liaison service to every disadvantaged school. The Minister also announced a £1.5 million provision for the establishment of a National

Educational Psychological Service for schools. The Minister said~ "The estimates and budget process have led to very substantial extra funding for education. The two-year educational disadvantage programme will make a major contribution to helping us achieve our most important goal, which is to broaden and deepen participation at all levels of education. We don't believe this programme will end educational disadvantage, but it well help us to tackle it head on in many critical areas".

The remedial service outlined will be available to all primary schools from September next. It was announced that all schools currently without a service will receive a service in line \vith the recommendation that each teacher should deal with roughly 30 pupils in need of the service. The Minister has placed a high priority on the establishment of a National Educational Psychology Service. This service Vvill play a vital role in helping identify the special educational needs of children. The £1.5 million is for the establishment and initial staffing of the service over the next two years. The Minister also stated that increasing the number of children who complete the senior cycle is a key policy objective of the govenunent. With

regard to third-level education the Minister announced that £3 million will be allocated to promote access to third-level amongst students from disadvantaged backgrounds, including people with disabilities. In the next section a Draft Fine Gael policy on ADHD is presented for comparison purposes.

21 Objective One

In a draft Fine Gael Policy on ADHD "Giving people a life" (September, 1998) it is stated that

"the response to the diagn~sis, treatment and educational needs of ADHD varies widely between the different health boards. If in fact there is any awareness of the condition at all. At present there is no national strategy to deal with this problem. Dan Neville, TD, the Fine Gael Spokesman on Children, also stated that: "ADHD untreated can cause immense suffering both for those who suffer from the condition, their families who are left to deal with an intensely frustrated and often severely delinquent child and society as a whole which must bear the cost

of dealing with a delinquent c~d, who may well turn into a criminal in later life. The cost of

incarcerating a person in prison is approximately £40,000 a year in the US, studies ~ve also shown that up to 30% of persistent offenders are believed to suffer from untreated ADHD. Fine Gael believes tliat there are two key elements to a successful strategy.

1. The formation of an effective screening programme which can identify the disorder early » _.,... enough to treat it appropriately and greatly increase the chances of a successful life for sufferers. Screening should be aimed at 6-7 year olds. 2. A campaign of Widespread education and the publishing of 'best practice' for medical .. professionals, to urgently increase awareness of the condition.

In order to ensure that this strategy is put in place Fine Gael believes that an interdepartmental . • committee with representatives from the Department of Health, the Department of Educatiog;r the Department of Social Welfare, and the Department of Justice should be created to formulate an effective interdepartmental response to the problem of ADHD as a matter of urgency. As well as addressing the two key elements outlined above the following should also be addressed. • Raising greater awareness of ADHD, it symptoms and effects among the teaching profession. This should include changes in the syllabus of Teacher Training Colleges and especially raising awareness among speech therapists as 30% of referrals to a speech and language therapist are ADHD related.

• Identifying the best available treatments for affected individuals and ensuring that these are available locally on an equitable basis.

• Proving advice, information and support to affected individuals and their families.

In the next section the ADDIH service provided in Our Lady's Hospital for Sick Children is presented followed by a brief evaluation of the service. Although the service was only in existence for eight months at the time of the evaluation, parents were asked their opinions about the service as well as some background information on their child with ADD/H.

.... ;w;:. ~ -· • . .l' Objective One

4.2 Our Lady's Hospital for Sick Children, Crumlin In Aprill998, Our Lady's Hospital for Sick Children opened the first designated ADHD service in the country.;; nus service was financed by the fundraising activities of ~e two Dublin Parent Support Groups. The service staff comprise a psychiatrist, three peadiatricians, one child psychologist and two neurologists. All of the staff work at the service on a part-time basis. Patients attending the service are aged between three and 16 years. Referrals are made to a consultant. All patients are then referred to the psychologist. There was a waiting list of eight months for psychological services and a waiting list of two-three months for neurological services. The assessment and treatment process for children and adolescents with ADDIH are described in the next section.

Assessment Process The assessment process is very comprehensive and thorough in order to rule-out alternative conditions, particularly agitated depression, anxiety conditions, psychotic illness, and substance abuse which may cause symptoms of inattention and hyperactivity. The assessment involves a thorough history of patients' physical, emotional, intellectual, educational and social development. Extensive behavioural checklists are completed by parents and teachers or by patients themselves. Cognitive te.sts ofiQ and ability are administered as are neuropsychological tests and computerised performance tests. A medical history is also taken including a medical examination. There may sometimes be an assessment of drug and/or alcohol abuse. In summary the assessment process includes the following:

1. Parent, teacher, and patient checklists and interviews 2. Psychological and educational/achievement evaluation 3. Clinical and medical examination

Assessments are made by medical consultants and a clinical & educational psychologist.

23 Objective One

Treatment Process The treatment process usually begins with education about the disorder for the patient and the family. Parents are taught behaviour management techniques. There is generally some form of ,. behavioural therapy also for the person ¥.oith A8DIH. This may include behaviour modification and cognitive therapy for adolescents and adults, drug and alcohol assessment. The treatment process may also medication.

The service at Our Lady's Hospital also runs a film service for parents about ADD/H. There is also a counselling service for parents and children. It also provides an information service, providing information about support groups and conferences .

.1\.s mentioned earlier a brief evaluation of the service at Our Lady's Hospital was undertaken. The methodology and findings are presented in the next section.

~ ~ Objectiv~ One

4.3 Evaluation oftbe ADD/H Service provided at Our Lady's Hospital, Cr.umlin In order to ascertain parental opinion about the service at Our Lady's Hospital a small evaluation of the service was undertaken. The methodology, procedure and the findings are presented below.

Method A questionnaire was designed to gather information about the ADDIH service provided in Our _ Lady's Hospital, Crumlin. The following areas were investigated:

• Demographics • Diagnosis • Services received

• Future needs

e Family burden

Procedure The questionnaires were administered to parents of children with ADDIH at a film service provided by Our Lady's Hospital, Crumlin on the 30th ofNovember and the 7th of December, 1998. The questionnaires were disseminated with consent forms (see Appendix A&B). These parents completed the questionnaire during the interval, returned it by post or interviews were conducted by telephone. Many of those who attended the film service had not yet received services other than their medical evaluation due to the eight-month waiting period to see the psychologist. Of the 92 patients referred to the ADHD service between May and December 1998 approximately 40 patients had received at least one session from the psychologist.

Results In total, 22 questionnaires were completed and returned by parents on behalf of their children of which 19 were male (N:::::l9, 86%) and three (N=3, 14%) were female. The average age of the participants was ten years two months (S0:::::3.9).

Demographics Parents were then asked to indicate when they first noticed a problem in their child. As parents could not be exact in the age of their child at that time or because it was only noticed gradually, this category was divided into 'Early years' (0-3 years) and 'Childhood' (4-17 years). A total of 15 children were noticed to have symptoms in their 'early years' while six were noticed later on in 'childhood'. One parent did not respond to this question.

25 _ ,

Objective One

A total of 14 of the children were in primary school with six children in secondary school. The remaining two children were not receiving any education.as one is 17 years of age while the other child is too young for primary school.

Diagnosis The mean age of diagnosis for the children \Vas just over nine years of age (SD=3. 74). The ...... ,. most frequent age of diagnosis was eight years of age with four children ( 18%) being diagnosed at this age.

Services received Parents were asked if their child had any additional needs beyond that which the services

I provided, 18 parents answered this question. Fifteen parents said yes, while only three parents _J said no. The parents were then asked to comment on this issue. Parents gave a total of 16 responses. A total of eleven responses called for more educational support, especially on a one-to-one basis. There were also two parents who believed that there was a need for better parent links with schools.

. Of the 22 parents who responded, 17 had tried to implement behavioural strategies, learned at Our Lady's Hospital ADHD centre, in their home, while five did not try any such strategies as they had not received psychological services. The parents were then asked which techniques they found most helpful. The most favoured behavioural strategy chosen by parents to use in the home, was the 'star reward system' v.-b.i.ch is a system of giving a child a reward when the child performs a 'good behaviour'. A total of six parents used this strategy. Another favoured strategy chosen by four parents was to introduce routine into the household, while another four parents found a calm environment a helpful technique. Three parents used the technique, 1-2-3 Magic, while three more parents suggested that structure was a beneficial strategy. There were three other teclmiques suggested by parents that they found helpful. They were 'post-event review', ignoring and time-out. It should be noted that three of the parents stated that no behavioural technique was effective until medication (Ritalin) had been taken by the child.

A number of parents (N=ll) believed that as a result of ADD/H their children were 'underachieving' compared to their actual ability. There were also three notable cases of suspension, expulsion and a case where legal proceedings were necessary to enable the child to receive education. There were two cases where the child had fallen so far behind in school that he/she had to repeat a year. Two parents suggested that the effect of ADDIH on the child's

10017> - ~'"' . . ..,.,.-~- ~ j,J,#l ~""l::f*~'i~~... 1 • .._.. Objective One

education lead to low self-esteem. In another case, it was reported that interaction with their child's peers was a problem while two cases called for the need of a private tutor, or at least a teacher educated about ADD/1·1.

Parents were asked to rate their satisfaction with twelve services that they may have received on a scale of: (a) satisfactory, (b) neither satisfactory nor dissatisfactory, (c) dissatisfactory. The percentages below reflect only those parents who provided a response.

• In an assessment by a consultant 15 ofthe 17 parents who responded were satisfied with the service received while two parents did not express an opinion.

• The majority of parents who responded (N=ll) were satisfied with the medications they were prescribed, while two were unsatisfied with the medications given to their children. The remaining parents did not answer this question.

• Of a total of 13 respondents who answered the question, twelve were satisfied with the psychological services received at the ADDIH clinic. The remaining parent did not comment.

• A total of l 0 parents were satisfied with information received from parent support groups/conferences. Half the sample (N= 11) did not answer this question as they had not received this service.

• With regard to education about ADDIH, 13 parents had received the service while five had not as they were on a waiting list for psychological services. Eleven parents stated that they were happy with the service while one parent claimed they were unsatisfied to be on a - waitlist for psychological services. • Half of the respondents received strategies to address problem behaviours. A total of nine had not received this service as they were on a waiting list.

• Eighteen parents attended the film service. Fourteen parents were satisfied with the service. The remainder would like films about Irish children with ADDIH as the majority of videos available are from the US

27 Objective qne

• Two parent's children received the CPT computerised test and were satisfied \\'ith the service. The test had just been purchased for the service.

A total of 14 of the parents had a child who was taking medication. Two children were taking Clonidine, eleven children were currently on Ritalin, while one child was taking Dexedrine. When asked if any changes have been seen in their child's behaviour as a result of the medication, 13 parents said yes. Only one said that they have not noticed any changes in their child's behaviour.

The parents were then invited to comment on the effect the medication had on their child. The most common answer was that parents noticed that the behaviour problems had diminished since the introduction of medication. Three parents also thought that their child was showing greater awareness of what was going on around them. Three parents believed they had seen a dramatic positive change in the social and educational aspects of their life and at home. The ~ only other comments that the parents made were that their child's conversation was normal. Finally, one parent claimed that their child was much more focused after taking medication. A total of two parents however commented that their children had suffered nausea, poor appetite and aching.

The parents were then asked to comment on what improvements they had seen regarding their child's overall welfare. Four parents said that there had been a positive impact on behaviour. Three parents felt that their relationship with their child had improved, while the same number were happy to report that their child now had friends. Parents felt that there was a positive impact on their child's education. One parent reported that their child was like a different person.

When the parents were asked about any disadvantages to the medication, eight said that they had found disadvantages. Five parents reported that the medication reduced their child's appetite and three parents said that their child was sleepy especially in the evenings. The same number of parents stated that the initial medication was unsatisfactory as there were side effects. However these side effects were reversed.

-J

~ w- ~··=~~ ~.···%"!'4'li'

In the next section of the questionnaire, parents were asked some questions about themselves. Firstly, they were asked if they thought that either parents were ADD/H. Half of the sample (N= ll) said they thought they had the disorder, while nine did not believe themselves to be ADD/H. The remainder did not answer this question.

Future needs Parents were asked what services they would like to see available. Eight parents said that they would like to see services in each Health Board. A total of six parents wanted more professionals to be made available while five parents wanted services provided for all age groups.

Family burden Two questions were asked about what home life was like before and after ADDIH was recognised, the findings are presented below.

Before ADDIH was recognised most parents (N=l5) complained about their child's hyperactivity and behavioural problems. A total of five parents said that their home life was disrupted and fighting went on between family members. As a result of undiagnosed ADDIH, four parents stated that they were tense and depressed. Other comments made by parents were that their children had trouble keeping up academically. Others said that home was noisy and disorganised. Just over five reported that their child had no friends before the diagnosis, while two complained of their child taking on dangerous challenges.

When the parents were asked what home life was like after the ADDIH had been recognised, nine parents said it was much calmer, while another nine parents said that there was a notable improvement in the home after the ADDIH diagnosis. A total of two parents reported being happy to learn why their child had been behaving the way in which they had, whereas two parents said there was now more organisation in the home and one parent said there was less. disruption. However, two parents stated that life was still stressful at home.

Parents were then asked to complete a section about family life before attending the services at Our Lady's Hospital. They had to rate their answers on a scale from 'severe burden', 'moderate burden' to 'no burden'. The first question asked of parents was whether there had been any loss of income to the family due to the child's disorder. Thirteen parents reported that

29 Objective One ~

the disorder was a moderate burden. A total of three stated that it had been a severe burden on their income while five said that the disorder had not been a burden on their income.

The second question asked if their child's behaviour disrupted activities such as not letting others sleep. A total often parents reported that this was a severe burden on family life. Another ten parents said that it was a moderate burden, while two did not comment.

The parents were then asked whether their child's ADDIH interfered with normal recreational -" activities. Only one parent reported that their child was no burden, however, ten parents stated that their child's ADDIH had a severe burden on recreational activities. The same number of parents (N= lO) said that the child's ADDIH was a moderate burden in this regard.

'--' When asked whether neighbours or relatives had reduced/stopped visits because of the child's behaviour, two parents said yes this had been a severe burden, while ten reported that it was a moderate burden. A total of six parents stated that their child's behaviour had not created a burden on visits.

The final question parents were asked regarding family life before attending Our Lady's Hospital was whether there had been any adverse effect on the health (for example, depression) of anyone in the family. Over half of the respondents (N;:; 12) reported that they thought there had been a moderate burden placed on the health of the family. Seven parents believed there to have been a severe burden on the family's health, whereas only two did not consider any adverse effect to have burdened their family's health.

The parents were asked to rate the same items presented above, however, on the second occasion parents were asked to answer these questions regarding family life AFTER attending the service at Our Lady's Hospital.

A total of eight parents did not believe their child's disorder to be a burden on their income, since receiving the service at Our Lady's Hospital, however, two still stated it to be a severe burden. A total of six thought it to be a moderate burden, compared to 13 parents before they had received the service. It is clear from the figure below that the percentage experiencing no burden increased.

~ ~ -~ -~ r

Objective One

M~ Burden No Burden

Figure 1: Experience of financial burden due to the child's disorder before and after attending the ADHD Service

When asked if after attending the service did their child's behaviour disrupt activities, only one

parent said their child's behaviour was a severe burden, compared to ten who said it was a severe burden before they had received the service. However, seven still found their child's behaviour a moderate burden, while six stated their child's behaviour ·was now no burden, whereas, before the service, no one had rated this scale. As evident from the graph below the number of parents reporting 'no burden' had greatly increased.

0 Severe Burden Moc!er.ue Burden No Burdec

Figure 2: Experience of child's behaviour disrupting activities before and after attending the ADHD service

31 Objective One

The parents were then asked if their child's ADHD interfered as much now with nonnal recreational activities. A total of eleven found that it was. still a moderate burden, whereas, before the service ten found it a moderate burden. However, only one parent now found it a

severe burden, nine less parents than before the service at Our Lady's Hospital was provided. The drop in the number of parents reporting 'severe burden' is clearly evident from Figure 3.

--Before 40 ---After

20 20

4 0 1}••""""..-:o"!:·········-·

Sev= Burden Mode:21e Burda> NoBurda>

Figure 3: Burden on recreational activities due to the child's disorder before and after attending the ADHD service

Whether relatives and neighbours stopped or reduced visiting to the family because of the child's behaviour, was examined by the next question the respondents answered. Previously, two parents had found this a severe burden, but since the service had been received no parents commented upon it as such. All of eight parents said it was no burden, while the same total, found it a moderate burden. These findings are presented in Figure 4.

- . >«<. ~'' ¥~ ,~~~~x~-~------___; Objective One

30 1 -+-Bci>~ -9-Aier

0 Severe Burden NoBwden

Figure 4: Neighbours stopped visiting due to child's behavior before and after attending the ADHD service.

When asked had the child's disorder had any other effect on relationships within the family or between the family and nei&hbours or relations, only one parent said it was a severe burden since the service, whereas nine had previously considered it to be such. As many as six did not report any burden on relationships within the family or with neighbours. However, eight parents still found it a moderate burden. The increase in the number of parents reporting no burden had a service had been received is evident in the figure below.

-e-kfol"C 30 -11-Af\c:r

Severe Ba.rQ:.c Moderate Sarcll:t: NoBurdcu

Figure 5: Family relations due to the child's disorder before and after attending the ADHD service

33 Objective One

Again the final question was in regard to whether there was any adverse effect on the health of anyone in the family. A sum of five respondents, said that there was no health burden for anyone in the family. Only one parent felt there was still a severe burden on family health, since receiving the service. A total of ten parents still claimed to be under a moderate burden, two less than before the service bad been received. These findings are presented in the figure below.

(0 --Bcfcre ---~r 30

0 Severe Bl;rd:n Moclaate &rct:n No Su:den

Figure 6: Health burden due to the child's disorder before and after attending the ADHD service.

Finally, the 22 parents were invited to make any other comments about the services received. Tilree parents stated that the service had only been in existence a short time and more time was

~ needed to properly evaluate the full benefits. Another comment was that two parents believed Ritalin v.-as like a "personality transplant", while the same number believed the condition was best handled when the diagnosis was made. A final comment stated that having a child with ADHD was very depressing and testing on parents (N=2).

To conclude, the majority of patients attending the service were male, with an average age of ten years and many children were diagnosed years after a problem was first noticed. The majority of parents bad implemented behavioural strategies, learned at the ADDIH service, at home. Parents were satisfied with the services received, the only problem being the lack of services available and the fact that parents were on a waiting list for appointments with

...,.., - ~ Objective One professionals at the clinic. Medication generally worked well according to the parents. Interestingly, approximately half of the parents interviewed believed themselves to the ADDIH and wanted information on adult ADD/H. The majority of parents said there had been an improvement in family health after attending the ADDIH service at Our Lady's Hospital. It is noteworthy that the service had only been in existence for a short time.

The ADDIH services provided at Temple Street Children's Hospital are outlined in the next section.

35 Objective One

4.4 Temple Street Hospital An Assessment and Treatment Service for ADHD is available at St. Francis Clinic, Temple Street Children's Hospital and it has been in operation since March 1997. This is one of the first hospitals to develop specialised services for ADHD families. Professionals at the hospital saw children with ADD or ADHD on an individual basis and saw the need for a specialist multi-disciplinary clinic. The age range of the clients is from four to 14 years. Referrals to the service are usually from consultants in the hospital or from other hospital consultants. GPs

generally do not refer clients to the service. Currently, there are approximately 36 children, ,_; primarily boys, attending the service. A four-member team, comprised of a Consultant Child Psychiatrist, a senior registrar, a senior social worker and a clinical psychologist, run a clinic once a week The waitlist for the service is short. - Assessment &Treatment Procedure Initially a child is assessed by either (a) a doctor and a social worker or (b) a doctor and a psychologist. Parents are advised and trained on behaviour management techniques and

support groups are also in place. The team approaches schools ifthere are specific learning difficulties diagnosed. The DSM-fV criteria are used in diagnosis and over 90% of all referrals to the clinic are ADD or ADHD. However, children are often referred to other professionals for additional services, namely speech and language therapy and occupational therapy. A professional from the service who was interviewed highlighted the need for educational psychologists and neuropsychologists to be involved in the work of the clinic. Finally, medication is prescribed if it is considered appropriate.

ADDIH services necessary There is a need for more research to be conducted in the area. Also, there is a great need for the education and training of GPs and teachers about the disorder. There is not a great deal of awareness among professionals and there is a need for graduate training. Neurologists however are aware of the services.

A new service has recently been set-up in the mid-west of the country, the Neurodevelopment -• Clinic in Limerick. This is briefly reviewed in the next section.

~ · --= -..._. ~-- ·-- Objective_One

4.5 Neurodevelopment Clinic The clinic provides an assessment and treatment service for children and adolescents with neurodevelopmental problems, including those with ADD/H. It has only been in operation since the end of 1998. The service is run by a child psychiatrist and a community psychologist. Referrals to the clinic come from the child psychiatry department of the health board. Currently, there are more boys presenting to the clinic than girls.

A clinical interview and examination is central to the assessment process. Some ofthe treatments provided include the following: • behaviour therapy • speech and language therapy • social-skills training • medication • parent training • family therapy

The next section investigates the services provided to families of children with ADDIH by a clinical psychologist and an educational psychologist both of whom run a private practice.

37 Objective One

4.6 Private Services Many parents of children with ADD/H often present to clinical or educational psychologists for assessment, interviews with two professionals are presented below.

Clinical Psychologist in Private Practice The service provided by the clinical psychologist in private practice is mainly one of assessment. A detailed psychological assessment is conducted followed by a detailed repon, treatment recommendations and a follow-up service. The recommendations include behaviour ' management programmes for children and parents. The ages of children referred for assessment is between three and 16 years. The majority of children referred to the service are boys. The majority of referrals are from parents or GPs.

Mainly children -with ADD/Hare assessed, however, adults have also been assessed Recommendations made to adults ·with ADD/Hare generally concerned with self-help and coping in the workplace. This contact with the clinical psychologist is the often the first referral for many of the adolescents and adults who were not diagnosed with the disorder as children.

The clinical psychologist has assessed over one hundred persons with ADD/H. Approximately half of these cases were described by the clinician as ADHD specific (that is specific types of ADHD, for example inattention only, impulsive-hyperactive only, ADHD with Aspergers syndrome) and the other half as ADHD general.

ADDIH service necessary A multidisciplinary service needs to be available to individuals \\'ith ADD/H akin to the service provided at the ADHD clinic in Our Lady's Hospital, Crumlin, created specifically for persons with ADD/H. These services need to be available in different regions of the country. There needs to be extensive research in Ireland into the disorder ADD/H. Families of persons with . ADDIH need the provision of a special school to cater for children -with ADD/H. Moreover, there needs to be specific services for adults with ADD/H.

Attention was drawn to the need to adhere to strict criteria when diagnosing ADD/H, psychologists and psychiatrists need to work together closely in diagnosing and treating the disorder.

~--:,. ~ -·-~ Objective One

Awareness among professionals regarding ADDIH The clinical psychologist had knowledge about ADD/H through courses in Child Psychopathology, however the psychologist attended no specific course dealing with ADD/H. Experience and knowledge about the disorder had been gained through many years working with children with specific learning disorders and working in schools. Among professionals in Ireland there is a serious lack of knowledge about the disorder and the clinical psychologist interviewed tries to build awareness about the disorder as much as possible.

In summary, the role of the clinical psychologist is primarily diagnostic in nature with reconunendations for treatment programmes and a follow-up service. There is a need for psychologists and psychiatrists to work together closely when diagnosing and treating the disorder. Moreover, multidisciplinary and specialist ADD/H services need to be available countrywide. There also needs to be extensive research into the disorder in Ireland.

An interview conducted with an educational psychologist in private practice is presented in the next section.

39 Objective One

Educational Psychologist in Private Practice The nature of the service provided by the educational psychologist in private practice is one of assessment. School going children are usually referred for one of following reasons: (a) failing in school, (b) very poor behaviour, (c) truancy or a combination of the above. The schools generally inform parents about the services of the educational psychologist. The children are between ten and 15 years and generally the educational psychologist sees fives times as many - boys in the practice. Approximately 4-5% of all referrals received in the practice are children with ADD/H.

The educational psychologist is unable to offer treatment to these children and their parents and these cases are further referred to the ADliD service at Our Lady's Hospital, Crumlin or a consultant in the hospital. Assessments are detailed and the educational psychologist acquires a profile of the child from the parents and from school personnel. Rating scales are used as well as a battery of tests. Written reports about the child are discussed with parents and recommendations are made.

ADDIH services necessary Services for children with ADDIH should be provided in a mainstream school with a special ADDfH unit. In every school with more than 500 pupils there should be a classroom assistant and an ADDIH class. Special schools may lead to isolation and an inability to socialise so a mainstream setting would be the preferred setting for children with ADDIH according to the educational psychologist interviewed.

Awareness among professionals regarding ADDIH The educational psychologist interviewed did not receive specific training on ADDIH, information about the disorder was learned through attending conferences and from membership of related organisations. The educational psychologist is actively involved in heightening awareness of ADDIH through organising lectures on learning disorders and organising in-service training on ADDfH for teachers and parents. In general there is a growing awareness about the disorder.

,~~ ....-=- ~- ~ - ;,.,~- ~ ---= ._..,.,. -=-~.... Objective .Qne

4.7 Summary of Objective One Government Publications

• Government papers have not dealt with specific services for children with AD~IH

• There is a policy document being formulated which, according to the Minister for Health & Children, will include consideration of the specific needs of children and adolescents with attention-deficit disorder or attention-deficit/hyperactivity disorder

• Health boards are considering ways in which services provided by voluntary and/or private groups might integrate with the health board service

• The development of child and adolescent services will include the recruitment of additional psychologists.

• The Minister for Health and Children stated that ADD or ADHD is an internationally recognised condition of brain dysfunction. The number presenting to the health boards for

medical care would indicate that the prevalence rate is in line ~ith internationally recognised norms at approximately 1-3% of the child population based on !CD criteria. • The role of the educational sector needs to be properly recognised and teachers need to be provided with the necessary skills to identify a child under stress • A National Educational Psychological Service ...,.ill be introduced in all schools to identify the special needs of children • A remedial service will be available to all primary schools from September next as announced by the Minister for Education and Science

• Government papers did not refer to Adult ADDIH

41 Objective One

Evaluation ofthe ADDm Service provided at Our Lady's Hospital, Crumlin • The majority of patients attending the service were m;lle, with an average age often years • Many children were diagnosed many years after a problem was first noticed • The majority of parents have implemented behavioural strategies, learned at the ADDIH service, at home • There needs to be more links created with schools according to parents • Parents were satisfied with the services received, the only problem being the lack of services available • There is a need for services to be provided by each health board • Medication generally worked well • Approximately half of the parents interviewed believed themselves to the ADDIH and wanted information on adult ADDIH

• The majority of parents said there had been an improvement in family health after attending the ADDIH service at Our Lady's Hospital

• It is noteworthy that the service had only been in existence for a short time

ADHD service at Temple Street Hospital

• A four member multidisciplinary team run an ADHD clinic once a week • Children referred to the service are between four and 14 years of age, 90% of all referrals of ADD or ADHD using DSM criteria. Referrals don't usually come from GPs • Thirty-six children are currently attending the service, the majority are boys • Children are often referred elsewhere for specialist services, such as speech & language therapy • Parents are advised on behaviour management and support groups • There is a need for a more extensive team including a neuropsychologist and an educational psychologist • There is a need for adult ADDIH services

• A Neurodevelopmental Clinic has recently been set-up in the mid-west providing an assessment and treatment centre for children with neurodevelopmental problems including ADDIH

,., ~ ~.- ~ ~ -~· Objective One

Private Practice • Psychologists in private practice generally provide an assessment service including treatment recommendations or referrals to other professionals • Assessments include detailed psychological assessments and individuals are profiled from information provided by parents & teachers, very precise diagnostic criteria are adhered to • Mainly children with ADD/H are seen in the private practices discussed above, the majority of these are boys • Referrals come from parents, GPs and schools • The psychologists in private practice had no specific training in ADD/H, knowledge about the disorder was acquired through experience and many years of working in the area • The psychologists in private practice are involved in heightening awareness about the disorder through organising lectures on learning disorders and organising in-service training for teachers and parents

43 Objective I..wo

5. Objective Two To review ADDIH services and service models available in other countries namely the UK and the US and to interview key personnel involved in the provision ofthese services

The ADD/H services available in other coWitries, namely the US and the UK are reviewed in this section. The US services are described first, this section begins with a review of educational policies in the US.

Six professionals in the US provided information on the services available to children and adults ..vi.th ADD/H including: Dr. Thomas Giroux, Keller Centre, Fairfax County, Virginia Prof. Michael Gordon, Director of ADHD Clinic, Syracuse University, New York Dr. Kevin Murphy, Chief Adult ADHD Clinic, University of Massachusetts Medical Centre Prof. Arthur Robin, Professor of Psychiatry & Paediatrics, Wayne State University Prof. Mark Stein, George Washington University Medical School Prof. Jim Swanson, Child Development Centre, University oflrving, California

5.1 US Situation Children with ADD are entitled to a free and appropriate public education by two public laws - the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973. However children lacked access to such services because schools did not know much about ADD or treated ADD as some other disability. In 1990 Congress ordered a US Department of Education "Notice of Inquiry, to investigate how schools throughout the coWitry were serving children with ADD. In 1991 the Department ofEducation issued a "Policy Clarification Memorandum,, which binds all public and private schools receiving federal funds, indicating that children with ADD may qualify for special education and related services on the basis of their ADD when it significantly impairs educational performance or .learning. (CHADD facts 4, 1991). The Americans with Disabilities Act (1990) provides another means of requiring all educational institutions to meet the needs of children with ADD.

Despite these acts many children with ADD continue to be denied access to appropriate educational services. In order to investigate the services available for children with ADD/H in more detail two telephone interviews were conducted with experts providing services for children with ADD or ADHD in the US.

""'''' ·ii<>&l'*... ~

Services provided to children in the US

The centres contacted included the Keller Centre in Fairfax County1 Virginia and the Child Development Centre in the University of California. Both centres provide a diagnostic and treatment service for children and adolescents with ADD and ADHD. The nature of the services provided in the Keller Centre are described first. The diagnosis involves a very comprehensive evaluation of each child by a treatment team of professionals comprised of two clinical psychologists and a psychiatrist Each team would, on average, receive about five referrals per week. However, this is dependent on the time of year. The majority of referrals are between the months of January and April. This coincides with the grading period in American schools. The evaluation is detailed below. The centre caters for children aged three to 18 years. However, the bulk of the referrals are for children between the ages of six and twelve years of age. Children who are hyperactive usually present earlier. Initial contact with the centre is usually from a teacher or a parent on behalf of a child. An appointment is usually received within two weeks and testing is completed within five weeks of the initial contact.

Diagnosis and Treatment ofChildren at the Keller Centre Initial contact involves an interview v.--ith parents and the child. The parent is questioned about the length of time a problem has existed, the impact on schooling, and the impact on family life. In the case of the child, the parent completes a behavioural checklist, noting the severity of the behavioural problems. An adolescent completes a self-report measure of behavioural problems. Teachers are also interviewed about the child.

Standardised questionnaires are also used in the evaluation process, these include the Achenbach, the Cormers' Rating Scale, an ADHD rating scale based on the DSM criteria, and an academic performance rating scale. Direct measures of attentional scales are also used, these include the Test of Variable Attention which is a continuous performance test lasting 22 minutes. Such tests are used since rating scales are often biased particularly when students have multiple teachers. An IQ test is also administered. Individuals are also directly observed through a two-way mirror while completing a cancellation task. This allows for a detailed observation of the child completing a task and they are monitored as to the frequency with which they stop the task, leave the seat, etc.

The diagnostic procedure is very precise and strict medical criteria are adhered to before a diagnosis of ADD or ADHD is made. It is very much a "ruling out procedure", that is, considerable time is spent ensuring that there are no other eo-morbid conditions. These include

45 Objective Two

appositional-defiant disorder, mood disorders or depression, obsessive~mpulsive disorder, Tourette's Syndrome or behavioural tics. The majority-of individuals seen (approximately

50%) would be diagnosed as ADD "not otherwise specified". Approximately 2~o/o-30% would be both inattentive and hyperactive and the remainder would suffer from inattention.

At the end of the evaluation procedure a report is prepared and is discussed with a parent. If the child is diagnosed as ADDIH and this disorder impacts hugely on family life the individual is referred to a child psychiatrist for additional medical treatment. The child psychiatrist will

usually prescribe drugs such as Ritalin or Dexedrine. Multiple medications are o~ prescribed to modify other behavioural problems, such as the Ritalin/Clonidine combination in order to modify aggressive behaviour. However, in the majority of cases parents are taught behaviour management strategies and are educated about the disorder. Parents are also encouraged to be advocates for their children. Other professionals would be involved in the provision of such services. In the case of adolescents they usually partake in some kind of family therapy.

Staff at the centre try to encourage teachers to implement some strategies to assist the child in the school setting, for example, modifying work, giving the child preferential seating, increasing test time. However it is still an "up-hill battle" in the US and there is much resistance in the schools. Although many teachers are aware of the disorder and assist in identifying the problem it is easier to put a child on medication and the schools "wash their hands of the problem". This is often the case even though the Americans '\\

Diagnosis and Treatment at the Child Development Center, University ofCalifornia The age range of clients is between four and 15 years of age. The center is comprised of a clinic that receives 700 clients each year, half of these would be follow-up visits and the other half would be new referrals. There is also a school in the center, this is essentially a public school incorporating intensive interventions including behavioural techniques and social skills training for 45 children on average. Children attend the school on a daily basis for one year. The center also has a research programme in operation fi?.volved in a number of research projects at any one time including non-stimulant drugs in the treatment of ADHD. The initial contact with the center is made by a parent or the teacher and the parent together, usually after school conferences as was the case in the centre described above.

~ ·····-"'""- ~ ~~~!!~!!~'!!!!! Objective Two

In the assessment process standardised measures are not used. Rating scales are. used and

structured interviews are conducted -with parents and teac~ers. Observational studies of the child in a classroom setting are also conducted. A physician in the centre prescribes medication if considered appropriate. Approximately 20-30% of all referrals are diagnosed as ADD or ADHD. Moreover there are about three-four times as many boys than girls attending the centre. According to the expert interviewed, adopted children are over-represented in the ADfiD population. Another feature of the service provided is an eight-week training course in the management of the disorder for parents.

The above accounts are concerned with service provision for children with ADD/H. Services available for adults with ADDIH are described in the next section. r

Diagnosis ofAdults with ADHD in the US DSM-IV criteria are used to diagnose adult ADDIH in the US. Great concern is taken to ensure that the disorder was present in childhood, this information is often obtainable from old school reports. The disorder in adulthood must be associated with some impairment and should not be better accounted for by another psychiatric or medical disorder such as depression, anxiety, substance abuse. The disorder must also be evident across different situations. Full psychiatric batteries are also conducted. Adults are generally aged between 18 and 50 years although in one case a person in their late 70s was referred for treatment. One service receives about 15 new referrals per month and in this centre approximately 40% of referrals would be diagnosed as ADD/H. In the ADHD service at the University of Massachusetts there are approximately 15.0-250 new evaluations per year. In this centre approximately 50o/

Treatment ofAdults with ADHD in the US Treatment include the following: • Awareness and education about the disorder • Treatment of eo-morbid conditions • Vocational or educational counselling • Behavioural treatments • Medical treatments (mainly Rita1in and Dexedrine)

47 Objective Two

Some of the behavioural programmes include training in self-management skills. for example, leaving keys in the same place, time management skills, organisational skills. Training is also provided regarding how to make good life decisions.

On the whole adults with ADHD respond very well to treatments. According to Dr. Kevin Murphy ADHD is "the most treatable condition in psychiatry, ... however it is vital that a very thorough and comprehensive diagnosis is made".

Education ofprofessionals regarding ADD in the US The experts interviewed received minimal information about attention deficit disorder in college. The experts contacted were primarily self-taught and had many years of experience working with children and adults with ADD/H. There is no independent professional training in ADHD, however some colleges are now providing courses in ADHD. There are also conferences and workshops that are a source of information for many professionals interested in the area. Health-related professionals would not necessarily have the same level of interest or expertise in the area.

······-·~·- ·'::s.lli!i ~- -~ Objective Two

5.2 UK Situation In Britain today the under-diagnosis of ADHD is serious and extremely worrying in the delivery of health care to the public (Cosgrove, 1997). This may be due to the fact that hyperkinetic disorder and ADHD, similar but not identical disorders, have competed for the attention of the medical profession. According to Cosgrove ( 1997) child psychiatrists and paediatricians fail to recognise 90% of those children with the severest form of ADHD, namely hyperkinetic disorder. Medications commonly used in the UK include methylphenidate (Ritalin) and dexamphetamine (Dexedrine). Medication is always suggested as an initial trial and carefully monitored, and only continued ifthere are positive results with insignificant side effects. However the medication use between different countries is quite striking. The figure of 0. 03% of UK schoolchildren on stimulant medication compares with a figure of 1% in Australia and 2-3% for North America. Approximately 1% oflJK children have severe ADHD so there appears to be a case of under-medication at present. There are over 120 parent organisations for ADD in Britain. The vast majority of UK doctors were not introduced to Attention Deficit Hyperactivity Disorders (Cosgrove, 1997). Moreover " ... the vast majority r of the medical profession in the UK. in addition to child psychiatrists, are finding themselves at a disadvantage when a parent comes into the surgery or clinic wanting to discuss ADHD" (Cosgrove, 1997, p. 102).

In order to investigate the ADDIH services available in the UK a brief account of the services provided in the Learning Assessment Centre and the Center Academy are described.

Learning Assessment Centre r The Learning Assessment Centre, an independent NHS and private provider, specialises in the assessment of children with ADHD, hyperactivity, concentration difficulties, behavioural problems, and learning problems. This multidisciplinary service includes as necessary the following: • A paediatric and/or psychiatric assessment • Psychological testing and advice, with a full report • School liaison/teaching guidance • Behavioural management and counselling advice are available if appropriate • Child and adolescent psychiatry • Medical treatment

49 Objective Two

Center Academy in London The Center Academy has been evaluating children and adults for ADHD for over 25 years. The diagnostic procedure involves very careful gathering of information from the parents, the child and the school, a battery of neuropsychological test, medical involvement and a carefully monitored educational programme. The information for the evaluation procedure is gathered in two ways.

Firstly, the parents of the suspected ADHD child are interviewed in depth by the Director of Clinical Services. At this stage those with ADHD symptoms caused by temporary environmental issues can be filtered out. Secondly, a neuropsychologist gathers information through checklist format about the child's behav-iour from parents and teachers. This combination of information gives a dear picture of the child's behaviour in a variety of settings. This is followed by a battery of neuropsychological tests and computerised tests of attention. So as can be seen from the above the diagnosis involves the information from a knowledgeable interviewer and a clinical psychologist, and possibly a medical practitioner.

The Center Academy has developed two types of Classroom Management called 'Contingency' and 'Cognitive' Systems. Contingency Management consists of overall school based methods

developed after many years of experience of children ~ith ADHD. Cognitive Management, on the other hand, is a teacher-student format which is fun and often ingenious. Educational curriculums at the Center Academy are individualised for self-completion rather than group completion. ADHD classrooms at the Center Academy have been specially·designed with a

child ~-ith ADHD in mind. The ideal classroom provides structure with limited distractions as well as the flexibility to address the child's needs on an individual basis. Homework is designed to be successful and fun and to decrease stress in the home.

Motivation and attention are addressed for all students through the use of consistent reward systems and attention training devices, for example, fun activities at the end of the day or a day off school. Attention training devices allow for teachers to provide feedback to the students.

Socialisation difficulties are also addressed through classroom work and with the parents. Parent support groups have also been developed. Families also have the services of a trained ADHD counsellor. Indeed it is vital that the counsellor is part of the multi-modal team working with the family with ADHD.

.,.. ••...•..., . •. .,,..,'<,~!"'"~"""""WW<·V• •""v•v•+;~~ .,,.,,,~,·/·.'>'· "':~~&1 -'-- Objective Two

In some cases it is appropriate to include a trial period on medication as part of the treatment process. At the Center Academy a number of stringent steps have to be followed before medical treatments are discussed with the parents. At the end of a trial period o~ medication the parents and physician would decide whether to continue with the medication based on any improvements noted. Even if further medication is prescribed once a year there is a trial period off medication to further assess the benefits. The paediatrician would have observed the child in the academic environment before and after the medical triaL

5.3 Summary of Objective Two US services • Children with ADD/H may qualify for special education and related services when ADD/H significantly impairs educational performance or learning (Department of Education, US) • Specialist services for children and adolescents provide extensive diagnostic and treatment services for children and their families • In the Child Development Center children can attend a school for a year that specifically deals with children with ADHD • Individuals with ADD/H receive social skills training and are taught to manage and control their own behaviour • There are large research progranunes in the area of ADDIH • There are specialist centres in the US that diagnose and treat adult ADDIH • Adults with ADD/H respond very well to treatment • ADD/H is "the most treatable condition in psychiatry"

UK services • There are broad assessment and treatment services available to children and adults ,,.,.ith ADD/H • Assessment is a multi-&sciplinary procedure • Medication is strictly monitored and initially prescribed on a trial basis • Family supports are provided • There is an under-&agnosis of the disorder in Britain • The Center Academy also runs a school for persons with ADDIH, everything, including the classrooms and school curriculums are specially designed to suit individual needs

51 Objective Three

6. Objective Three To interview key personnel currently involved in providing services to persons with ADDIH in Ireland (induding teachers, teacher training colleges, youth services). It is noteworthy that current services for persons with ADDIH is almost exclusively offered privately.

This section begins with a review of the services provided by an educational psychologist working in a school, followed by the findings of an interview conducted with a remedial and resource teacher. This section concludes with a review of college prospectuses for teaching training college and from universities in Ireland who offer a Higher Diploma in Education ! Course.

6.1 Educational Psychologist working in schools The Educational Psychologist interviewed for the purposes of this study services over 20 schools, many of which are in disadvantaged areas. There is a ratio of one educational psychologist to every 5000 pupils. The age range of pupils is between four years up to about 12-13 years of age.

The educational psychologist provides a service to schools for children, parents and teachers. The services provided by the educational psychologist involves individual casework, assessment, consultation and working with teachers. The educational psychologist also provides in-service training for teachers on behaviour management.

The reforral process The educational psychologist was asked about the referral process within the school when children are suspected by the teacher as having ADD/If. However it was revealed that there are very few initial referrals where the teacher is concerned about ADD/Has teachers don't generally recognise the disorder. In general, many children are referred with behavioural problems, some of which are children with ADD/H. The educational psychologist went on to. say that it is very difficult to tease out behaviour due to learning difficulties and behaviour due to ADD/H. In cases were there are children with ADDIH the majority are boys. However, the educational psychologist did not know the exact percentage of ADDIH referrals. Referrals in general come from teachers via the school principal. There is a waiting-list but it's generally never more than two months. After an assessment by the educational psychologist children with ADD/Hare referred to child psychiatric services. The services needed for children with ADDIH according to the school educational psychologist are presented in the next section.

..,. ·;::.;:;;;~~. :· ~~~- ~~*.1'#· ·'*'*' '" .o'. . ,;<>.1 ' -~~~ Objective.Ihree

ADDIH services necessary There are many services necessary in the treatment of the disorder including a clear diagnostic service and behavioural management programmes for parents and teachers. Children need to be taught how to control and manage their behaviour. Children with ADDIH can do well in mainstream \Yith the services of a resource teacher to work on their skills and to help children manage their Clwn behaviour. However there is a need for more resource teachers to provide such services. According to the educational psychologist parents and teachers need to work together. Moreover the educational psychologist felt that a school-based service is less threatening for parents and for children as it gets away from the medical model of treatment

Training and awareness ofADDIH The educational psychologist had some training about ADDIH at college level however it was concerned with hyperactivity/hyperkinetic disorder and the educational psychologist felt there was a lot of confusion over different definitions of the disorder. Professionals within the field of educational psychology were becoming more aware of the disorder according to the educational psychologist interviewed. Moreover, teachers were becoming more aware of the disorder due to the presence of educational psychologists within the school service. In spite of this there is still a need for more teacher-training and proper ADDIH services. It was felt that there is little awareness about ADDIH among GPs.

In summary ADDIH services need to be provided at an early stage and children need better psychological services. Teachers and parents need training in behavioural management techniques and direct contact with professionals in the area is the best way to learn.

An intef\tiew was also conducted with a remedial and resource teacher the findings are presented in the next section.

.""'F Objective Three

6.2 The services of a remedial and resource teacher The type of service provided by the remedial and resource teacher include a remedial service in reading and improving self esteem, craftwork and cookery, and crisis management. There were three remedial and resource teachers in the school in question providing a service to children aged between four and ten years of age. The remedial and resource teacher worked with one child with ADDIH although there was a second child with ADDIH who did not attend the remedial and resource teacher. There were other children with ADDIH symptoms seeing the remedial and resource teacher. According to the remedial and resource teacher interviewed _.} there is a need for at least ten more remedial and resource teachers as the school is designated a disadvantaged school. Currently only those children with serious problems are seen by the remedial and resource teacher.

--' The reftrral process Referrals come from teachers generally and children are usually referred because of ._...J behavioural problems or because of 'falling behind' in the class. The child with ADDIH would meet the remedial and resource teacher for reading approximately four times a week for 40 ...._, minutes and for an hour on two afternoons. There are many people in the school involved in helping the child with ADDIH, however this is on the principal's initiative and not the Department of Education. The services necessary for children with ADDIH according to the remedial and resource teacher as presented in this section.

ADDIH services necessary According to the remedial and resource teacher interviewed some children with ADDIH cannot cope vvith a large class they need to be in a small group, ideally a specific school for children with ADD/H. Placement at such a school may only be for a limited period, for example, until behaviour problems are under control. This teacher felt that within the ordinary school setting

it is difficult to have a special unit for children with ADD/H. The open space within a normal .....J school creates chaos for a child with ADD/H.

Awareness among professional regarding ADDIH

The teacher interviewed became aware about the disorder after being referred a child with ~ ADDIH who was initially viewed as having bad behavioural problems. The teacher was not

initially aware that there were strategies for coping with children with ADDIH and was ___. basically self-taught about the disorder by attending conferences on ADD/H. The remedial and resource teacher has never heard of ADDIH within her professional training nor had the teacher

- ~ ~ Objective Three heard about the disorder from the Department of Education. The professional opinion of the remedial and resource teacher interviewed was that there was little knowledge about the disorder within the education system. In this particular case the principal is very supportive of children with ADD/H.

This particular teacher has tried to heighten awareness about the disorder within the school, through liaisons with class teachers who carry on behavioural strategies in the classroom as do parents out of school. Further awareness about.the disorder could be increased through the media, teacher training and professional training.

To conclude, this remedial and resource teacher felt there was a need for schools that dealt specifically with children with ADD/H. There was a need for increased awareness about the disorder and for professional training among the teachlng profession. Services for children with ADD/H should not be dependent on interested teachers and the goodwill of school principals.

A brief investigation of teacher-training courses and the provision made for training teachers about AD DIH is presented.

55 - Objective Three

6.3 Review of college prospectuses for teaching training college and universities College prospectuses were reviewed to investigate if provision was made in the course content for training teachers in ADD/H. Generally, taught programmes referred to meth?

1 This review is just concerned with the course content for teachers in how to deal with children with special educational needs, namely ADDIH, other areas covered in teacher-training courses are not discussed.

~ ~ .::::z:-·-·c:. Objective Three

6.4 Summary of Objective Three • Children are referred to the educational psychologist.and the remedial and resource teacher with behavioural problems, ADDIH is not generally suspected by teachers when they are first referred and the child with attention deficit disorder only is being missed altogether • After children are assessed by the educational psychologist they are usually referred to child psychiatric services • Many services are needed for children with ADDIH including better diagnostic services, and behaviour management progranunes for parents and for teachers who need to work together • Children with ADDIH can do well in mainstream schools with the services of a resource teacher, however there is a need for more remedial and resource teachers • Educational psychologists are increasingly more aware about the disorder however there is still a need for in-service training about ADDIH • Teachers were increasingly more aware about the disorder but needed more training in dealing with children with ADDIH • Currently much of the help received by children with ADDIH is due to a principal's own initiative s It is essential that school principals receive training in ADDIH • The remedial and resource teacher had no formal training in ADDIH and was self-taught about the disorder • There is a need for schools to cater for children with ADDIH • The course contents from teacher-training colleges and universities referred to training in coping with children with special education needs. This is not to say that colleges and universities do not deal with ADDIH nor that all teachers are unaware of the disorder and unable to cope with children with ADDIH

-----~ Objective Four

7. Objective Four To interview key medical personnel (zncluding paediatricians, neurologists, psychologists and psychiatrists) who specialise in thefield ofAttention Deficit Disorders.

In this section interviews with two medical consultants involved in assessing, diagnosing and medically treating children and adolescents with ADDIH is presented. Both consultants have been working in the area of ADD/H for many years. Interviews with psychologists working in the area have been presented elsewhere in the report.

7.1 Interview with medical personnel

A child psychiatrist was interviewed in order to investigate the nature of referrals regarding ADD/H to medical consultants in Ireland. The psychiatrist receives approximately three new referrals each week. Referrals come from all over the country via hospital consultants. The age of the clients range from three to 16 years, however approximately 98% of all referrals are children with more boys than girls referred. It was not unusual to refer patients to other professionals, for example, speech and language therapists.

"In this country there is a need for diagnostic centres in each locality providing psychiatric, psychological and medical services as ADD and ADHD are under-diagnosed in this country". These centres should cater for the needs of children and adults with ADD/H. Also at a local level there is a need for seminars about the disorder to be conducted in order to heighten awareness. The Department of Education and Science and the individual health boards should be involved in the education of professionals and involved in increasing awareness of the disorder among the general public. There is a great need for Continued Professional Development (CPD) among all professionals especially in the area of ADD/H.

A consultant paediatrician was also interviewed regarding their experiences with persons with ADD/H. The paediatrician provides a medical service to children with ADD/H., who can be very young up to early teens. According to the consultant interviewed ifADDIH is not picked up while the child is of primary school going age, it is more difficult for them to respond to treatment, generally children respond very well to drug treatment. The consultant is currently --' working with approximately 100 patients with ADDIH and receives about 15-20 new patients a year. Patients are generally seen once a year. Others paediatricans are very aware of ADD/H. The paediatrician interviewed also works as part of a rnultidisciplinary team.

~ -::::!!" ~ ~' -=· ~ ~-- ~: 'lW"' "·"""'' ·""""'" ··- .... ~.. Objective Four

7.2 Summary of Objective Four • The consultants are mainly treating children and adolescents with ADDIH • The majority of the referrals are boys • ADDIH needs to be diagnosed early for treatments to be successful • Children respond well to drug treatment • There is a need for diagnostic and treatment facilities for adults with ADDIH • There is a need for diagnostic and treatment facilities in each locality • There is a great need for Continued Professional Development (CPD) among all professionals especially in the area of ADDIH

59 --·""'""" Objective Five

8. Objective Five To interview key personnel involved in ADDIH support.groups namely the Irish National Council ofADDIH Support Groups and to access previous reports on ADDIH in Ireland conducted by the Support Groups. It is intended to identify the needs offamilies with --' persons with ADDIH and the needs ofadults with ADD/H.

1bis section begins with a short outline of the ADDIH support groups in operation in Ireland.

Reports completed by the support groups are referred to at the end of this section. -J

As outlined in the objective above the needs of the families of persons with ADDIH is also presented in this section. The majority of these families/parents are actively involved in support groups. Before presenting the findings a brief account of the methodologies employed are presented. Case studies are included at the end of this section to highlight some of the difficulties families of persons with ADD/H have experienced.

8.1 Support Groups There are currently eight support groups around the country. These are located in Dublin, Cork, Kerry, Waterford, Wexford, Limerick and Cavan. There are two support groups in Dublin and a support group is currently being developed in Galway. These groups are now organised into INCADDS, the Irish National Council of ADD Support Groups.

The ADD Adult Family Support Group \\'"3.8 established in November 1996 for families who

suffer \"Yith or as a result of Attention Deficit Disorder. The group provides information and support for these families. The group meets once a month. The support group also receives calls from professionals such as social workers who are interested in learning about ADD.

HADD, based in Dublin, provides an infonnation service. The membership of parents with children \vith ADDIH ranges from 170-180 within the Dublin area.

Cork's support group has 130 members registered in the group. The group offers a helpline which provides information and support. The Cork Group received 1,198 related calls in two months.

._.I

~ ~· ~~...... ,...... _,...... ,.,...... ,-:;:_"""!111;;., Objective Five

In Galway, an infonnation day was set up to determine the need for a support gr<:>up in the area. As there is a definite need for a support group in the area, one is being set up.

The support group in Limerick provide an information and support help line. The·helpline is available to people 12 hours a day. There are 200 members in this support group. 1bis group also provide conferences for interested parties.

TRADD in Kerry provides infonnation and emotional support. Since March 1996, the group has been in contact vv-ith 67 families.

Parents from the National organisation have met with advisors to the Minister for Education and Science, and have spoken on several occasions with the Minister for Health. They have also been in contact with the Minister for Justice. The groups have produced many documents, some of which include: • An Education Policy Statement, April 1997 produced by the Hyperactive/Attention Deficit Disorder Family Support Group, Dublin • Submission to the Minister for Education and Science, Mr. Micbael Martin, January, 1998 by the Attention Deficit Disorder Mid-West Support Group

• Submission to the Working Group on Young Offenders, Department of Justice, Equality and Law Reform, December 1998 by the Hyperactive/Attention Deficit Disorder Child/Family Support Group and the Attention Deficit Disorder Adult/Family Support Group, both based in Dublin

The National Co-ordinator ofiNCADDS has also produced documents regarding the provision of services for those with ADDIH in Ireland including

• Proposal for an ADHD Unit • Attention Deficit Disorder in Adults - A Proposal for Services

Many of the families involved in these support groups were interviewed for this study in order to ascertain the needs of families of persons with ADDIH in Ireland. The findings are presented in the next section.

61 Objective Five

8.2 Needs of families of persons with ADD/H To assess the current needs of families in Ireland, a group of parents were contacted between November 1998 and January 1999 to discuss their views on service provision. A brief methodology for this survey is presented followed by the findings.

Method Sample The sample of participants in the study can be broken down into two categories:

• Parents of children with ADD/H • Adults with ADDIH

These two groups are discussed separately. The names of parents of children with ADDIH, adults with ADD/H were given to the research team by the National Co-ordinator of INCADDS upon request.

Sample A total of 21 parents of children with a diagnosis of ADD/H were interviewed for this study. Some parents (N=2, 10%) gave information for more than one of their children with ADD/H. Thus, information was collected on a total of 23 children (N=23, I 00%), of which 21 were

male and two female (N=21, 91%~ N=2, 9%).

Procedure A Letter of Infonnation and Consent was devised for this study (see Appendix B). This document outlines the nature of the study and asks for participants' consent. This letter was either read over the phone or read by each participant before becoming involved in the study. If read by the participants themselves, they signed it to show their agreement to participate in the study. If it was read over the phone, their consent was sealed with the researcher's signature.

A questionnaire was devised by the National Research Agency Ltd. for the purpose of this study {see Appendix C). Each parent was read the same questionnaire and was encouraged to

give as much infonnation as they felt necessary. --""

...,..._.- ~ ':!Z: ''7.;;"' ...... ,... ~ ~ ~ ~· Objective Five

The majority of the interviews were conducted over the phone (N= 17, 81 %). The remaining four were conducted face to face upon the participants' request (N=4, 19%).

The questionnaire can be broken down into seven broad sections; l. Demograph.ics 2. Diagnosis 3. Current services 4. Contact with professionals 5. Medical treatments 6. Future availability of services 7. Public knowledge of the disorder

Demograph.ics Wrthin this section parents were asked who in their family has been diagnosed with ADDIH and the age of this person/people. Questions including the age problems were first noticed and the age problems were first presented to a professional were also asked.

Diagnosis Questions concerning diagnosis, the professionals who made the diagnosis and the age of the child when diagnosed were asked.

Current services At this point, parents were asked whether their child is receiving an additional service and if so whether they satisfied with this service.

Contact with professionals In this section questions regarding current professional contact concerning their child were asked.

Medical treatments Current use of drug treatments was explored in this section.

Future availability of services Parents were asked what services they would like to see available for their son or daughter and who should be providing such services

63 -- Objective five

Public knowledge of the disorder Questions were asked regarding public and professionalknowledge of ADD/H. Parents were also asked in their opinion how this knowledge could be increased.

The results of this study are presented below.

Results As mentioned earlier a total of21 parents (N=21, 100%) took part in this study. All ofthe pareQts who answered the questionnaire were mothers. Some mothers (N=2, 10%) spoke of I more than one child, thus data was collected on 23 children (N=23, 100%). The majority of these were male (N=21, 91%) with two being female (N=2, 9%). Their ages range between five and a half years and 29years. One person with no diagnosis was 29 years of age. The majority of people fell between the ages offive and a half and 14 (N= 18, 78%). A total of 3 children (N=3, 13%) from the sample are adopted (see Table 1).

,___,

-.J

64 ...._;

~· ~ ~-~ ..•.i/\.~-·;<;~; -:~ Objective .Eive

Table l: Age of children Age Number Percentage 5 Y2 years 1 4% 6 Y2 years 1 4% 7 Y2 years 1 4% 8 years 4 17% 9 years l 4% 10 years 2 9% 12 years 1 4% 13 years 3 13% 14 years 4 17% 16 years 1 4% 17 years 2 9% 18 years I 4% 29 years 1 4% Total 23 100%

When parents were asked iftheir children attend primary or secondary school, it was reported r that eight children (N=8, 35%) attend primary school, eight attend secondary school (N=8, 35%) and seven fall into the 'other' category (N=7, 30%) (see Table 2)

Table 2: Number and percentages of those attending primary school, se<:ondary school and other. YES(N) YES(%) 'Primary 8 35% Secondary 8 35% Other 7 30% Total 23 100%

A total of seven children (N=7, 30%) did not attend either primary or secondary school. lbis 'other' category can be broken down as follows. It was reported that almost half of these respondents (N=3, 43%) are currently not in school. Nearly 30% (N=2, 29%) are in a special school with one child (N=1, 14%) attending a special class (see Table 3).

65 ____,

Objective Five

Table 3: Breakdown of 'other' category. OTHER YES (N) · YES(%) Not in school 3 43%

Special School 2 29% Special Class l 14% Living abroad 1 14% Total 7 100% _,.

Parents were then asked at what age did they first notice any problem in their children. A total often (N= lO, 48%) parents reported noticing problems either before, during the birth of their child or before the end of his/her first year of life. A total of four parents (N=4, 19%) reported that they noticed problems in their child at 3 years of age. See Table 4 for more detailed results.

T able 4: Age at which a problem was first noticed Age problem first Number Percentage noticed Always 1 4% Prenatal 3 13% Birth 4 17%

10 months l 4% ._, 1 year 1 4% Infant 2 9% 2 years 2 9% I 3 years 4 17% 4years l 4% 6 years 2 9% 6 Yz years 1 4% - Can't remember 1 4% Total 23 100% -

'--'

~~ h$kJLJQ4 C Q,l'~ Objective Five

Participants were then asked at what age did they present these problems to a professional. The ages reported ranged from 'never· (N=l, 4%) to 'eleven years• (N=l, 4%). Only four parents (N=4, 19%) presented their children to a professional before the end of their child's first year. The number of children who saw a professional during this time was four (N=4, 17% ). A total of five parents (N=5, 24%) presented their child to a professional at three years of age. At the age of four years, three children (N=3, 13%) visited a professional. From the

ages of five to eleven, nine children (N=9, 39%) visited a professional. More information is displayed in Table 5.

Table 5: Age problem first presented to a professional

- ..I Age problem first Number Percentage presented to a professional ' Never 1 4% From birth 2 9% Infant 1 4% 7 months l 4% 3 years 5 22% 4 years 3 13% 4 Yz years 1 4% 5 years l 4% 6 Yz years 2 9% 7 years 2 9% 9 years 2 9% End of primary school l 4% ll years I 4% Total 23 lOO%

The next question asked was whether or not a diagnosis of ADD/H had been received by their child. The majority of children have received a diagnosis of ADDIH (N=21, 91% ). One child has not yet received a diagnosis (N= 1, 4% ) whilst another was self diagnosed and felt no need to visit a professional (N=l, 4%). This is outlined in the table below.

67 -· - ,..... Objective Nve

Table 6: Number and percentages of diagnoses received

Diagnosis received Number · Percentage 1 Yes 21 91% Self diagnosed 1 4% No l 4% Total 23 100%

Parents were then asked who made this diagnosis. A total of 21 children received a diagnosis. - Of these children, eleven were diagnosed by either psychiatrists or neurologists (N=l1, 52%) vvith four children (N=4, 19%) diagnosed by a paediatrician_ The same number (N=4, 19%) -.1' were reported as being diagnosed by a psychologist. Only one child was diagnosed by their General Practitioner (N=l, 5%) see Table 7.

Table 7: Number and percentage of children diagnosed by different professionals Diagnosed by Number Percentage

Neurologist 7 33% -~ ·Psychiatrist 4 19% Paediatrician 4 19% Psychologist 4 19%

General Practitioner 1 5% I I Can't remember 1 5% I i Total 21 100% I ......

Not all of these diagnoses were conducted in Ireland. A total of two diagnoses (N=2, 10%) were made in the United Kingdom. These were conducted by a psychiatrist and a psychologist (see Table 8).

_,....

r- ~ .=:=- ~ :=:-- ~ ~ ;\'~ ;ti~ ~1\< ~-1MIIfl\v., _ .• .,~... Objective Five

Table 8: Number and percentages of diagnoses received in Ireland and the United Kingdom

Diagnosed by Ireland United Total Kingdom

Neurologist 7 (33%) 0(0%) 7 (33%)

Paediatrician 4 (19%) 0(0%) 4 (19%) Psychiatrist 3 (14%) 1 (5%) 4 (19%)

Psychologist 3 (14%) 1 (5%) 4 (19%)

General Practitioner 1 (5%) 0(0%) 1 (5%)

Can't remember 1 (5%) 0 (0%) 1 (5%)

Total 19 (90%) 2 (10%) 21 (100%)

It is interesting to look at the age of the child when the problem was first presented to a professional and the age when the diagnosis was received. The difference in years between the age when the problem was first presented to a professional and age at diagnosis ranges from the same year (N=6, 29%) to eleven years (N=l, 5%). A total of six children (N=6, 29%) were diagnosed as ADD/H within a year of their problems being presented to a professional. A total of four children (N=4, 19%) had to ·wait four years before receiving a diagnosis. Only three children (N=3, 14%) had to wait one year before their diagnosis was received. These results are displayed in the table below.

69 Objective Five

Table 9: Comparison between the age problem first presented to a professional and age at diagnosis

! Age problems Age at diagnosis Approx. difference in presented to a years professional Infant 4 'l'2 years 3 Yz years Since birth 5 years 5 years Since birth 3 years 3 years

3 Years 8 years 5 years : 3 years 12 years 9 years 3 years 3 years same year 3 years 8 years 5 years 3 years 3 years same year 4 years 5 years 1 year 4 years 4 years same year 4 years 15 years 11 years 4 Yz years 4 Yz years same year 6 Yz years 6 Yz years same year 6 years 6 Yz years same year 7 months 11 years 10 years 7 years 12 years 5 years 7 years 8 years 1 year 9 years 17 years 8 years 9 years 11 years 2 years 11 years 15 years 4 years 11 years 12 years 1 year

" ··-· ------

The next question examined whether or not the school system effectively meets the needs of these children. A minority often children's needs (N=lO, 43%) are effectively met by the school system. On the other hand, 13 children (N=l3, 57%) do not have their needs met (See Table 10).

H.... . il:;..;;;,.,,...... ,.,.,.....wr;:otAI!f*,...... ~· . ...,· - -. ;~-""..;::,.. ~~;;~:<-~».a· a ,_ .... ~~~-~-- ~"" : 1111:1 !e!! ~.J Objective Five

Table 10: Number and percentages of children whose needs are effectiv:ely met by the school system ·· Number Percentage Yes 10 43% No I3 57% Total 23 100%

Below are some of the responses of those parents who answered positively to the above question.

X could not cope in regular school and as a result is in a special class

When parents give the school information on ADDIH the school are very cooperative. Schools are not equipped to deal with it. As a result, we as parents work closely with teachers r My child is in a special school so can avail ofspeech and language therapy and occupational therapy. However there is no service for ADDIH

The school is very good

The teacher is working very closely with the mother. However next year wW have to startfrom scratch and explain the situation to the teacher

X is managing well at the moment but could do with more help and support

Gave the school a lot ofinformation on ADD/H.

Below is a sample of comments from parents who believe that the school system does not effectively meet the needs of their children.

My child needs daily remedial help in school which s/he is not receiving. Slhe needs to be in a class specifically for children with ADDIH

Teachers are not interested

X was always in trouble in school. Now schools will not take the child in. Out of school for the last year and a half New teachers are not being taught about ADDIH

X is in a classroom where the teacher is trying to teach four classes ofa total of14 pupils within the one room. This teacher is also the principal ofthe school. Son can not cope with the amount ofhomework and has lost his confidence. We (parents) are looking to change school where he can get the necessary remedial help

Receive empathy from teachers. We (parents) informed teachers ofour child's disability when he was in first year by passing around information from the support

71 - Objective Five

groups. X failed his junior Certificate. Teachers are not trained to (lea! with children with ADD/H.

X was very disruptive in school. Tried a number ofdifferent schools. Out ofschool since first year secondary school

Some teachers are supportive, others are just not aware ofADD/H.

X survived junior school due to my (mother's) home tuition. At times had to be kept out ofschool due to his disruptive behaviour. Now he is in secondary school and cannot survive in a class of 33

X had to change school several times. Very disruptive in school. Did not have the ability to pay attention. Expelled from school and is currently at home

Teacher does not believe diagnosis. Although X is in a special school, his needs are not being catered for

X receives remedial help three times a week for 20 minutes. There is no resource teacher available to him. Slhe needs this facility

Expelled from four different secondary schools. When attending a school with small numbers he did much better. When he was 15 years the educational psychologist said he was of university material

Suspended a lot from school at primary level

Now only doing three subjects in school. Can only attend for halfdays

Left there in school, it is only a babysitting service. IJX had input from speech and language therapists in the past he would be doing fine now in school

Problems in school. X is easily distracted. No memory for learning. ·-

Parents were then asked iftheir children are receiving an additional service. A total often children (N=lO, 45%) are receiving an additional service, these are detailed overleaf.

However, it was reported that the majority of respondents (N= l2, 55%) do not receive an additional service, (see the table below). One person is 29 years and living abroad thus information on this question was collected on 22 children.

Table 11: Number and percentage of children receiving an additional service

Number Percentage Yes 10 45% No 12 55% Total 22 100% ---- '--

~ .,..~ ~~ >')t ~ . ~ ~ =~··. ~-·· Objective Five

Different types of services were reported by those who are receiving an additional service {N= 10, 45%). These include behaviour modification, res0urce teacher, physiotherapy in the Central Remedial Clinic, private remedial teacher, private tuition during the holidays, attending a homework centre sponsored by FAS, adolescent clinic, on to one tuition in school for six r hours a week and group sessions with other children with ADD/H. It was reported that some children receive more than one service. These results are displayed in Table 12.

Table 12: Number and percentages of children receiving different types of services Type of service received Number Percentage Behaviour Modification 3 21% Resource teacher 2 14% Private remedial teacher 2 14% Physiotherapy l 7% Adolescent clinic l 7% Attends homework centre l 7% Private tuition l 7% Group session 1 7%

One to one tuition in school 1 7% Remedial help in school 1 7% Total 14 100%

Of the ten children who receive additional services, it was reported that the majority are satisfied with the service (N=7, 70%). However, three parents (N=30%) reported that they are not satisfied with the additional service their child is receiving (see the table below).

Table 13: Level of satisfaction with additional services Number Percentage Satisfied 7 70% Not satisfied 3 30% Total 10 100%

73 Objective Five

Table17: Number and percentage of children taking different types of medication

Type of medication NumJ>er Percentage Ritalin 13 12% Clonidine 2 11% Ritalin and Clonidine 2 11% Ritalin and Respiradone I 5%

Total 18 100%

Parents were asked if they find this medical treatment beneficiaL Of the 18 children ,Who receive medical treatment it was reported that16 children (N= l6, 89%) find it beneficiaL Only one parent (N= 1, 5%) reported that it is not beneficial as it is only effective for an hour, she believes her son also needs Clonidine. Another parent (N= l, 5%) is unsure as to how beneficial the treatment is. She reported that it is somewhat beneficial while her child is in school, however she would like him to receive medical treatment for his appositional defiant disorder (ODD) (see Table 18).

Table 18: Number and percentage of those who find medical treatment beneficial Number Percentage l Yes 16 89% No 1 5% Unsure l 5% Total 18 100%

Below are a sample of comments from those who reported that the medical treatment is beneficial.

Clonidine is more effective and cheaper than Ritalin. Ritaltn made some difference but dulled part ofhim

Although the Ritalin is extremely effective, there has to be some alternative, it is awful to be giving your children stimulants

One day X forgot to take his Ritalin and was very disruptive in school

Ritalin not sufficient for his behaviour

When X is on the Ritalin Clonidtne combination, benefits can be seen within months. The medication keeps his ideas and thoughts at bay

%2Jt! Objective Five

Without Ritalin s!he is terrible in school

With Ritalin there is a big improvement in X's concentration

Ritalin is not a miracle answer but a crutch

When X is on medication he can sense fear, without it he is unable to do so.

A total of four parents responded that their children were not receiving medical treatment. \Vhen asked if they would like their child to receive such treatment, two parents reported that they would not like their child to receive medical treatment. Reasons for this are outlined below. ... . became depressed on it

... . is not hyper but anxious, panics and is a perfectionist

The remaining two parents are unsure whether 01 not they would like their child to receive medical treatment. Their responses are recorded below. Ifs!he gets very distressed maybe it would be a good option. Perhaps s!he would do better in education due to increased attention.

... does not believe he needs medication

Future availability of services The following section examined future availability of services. Parents were asked what services they would like to see available for their child. The services reported can be broken down into seven categories. 1. Services within the educational system 2. Professional awareness 3. Special facilities 4. Financial assistance 5. Vocational training 6. Diagnosis and treatment 7. Understanding A number of parents (N= l2, 57%) would like to see services within the educational system. A total of 32 responses were given as some people gave more than one response Better diagnosis and treatment was reported by five parents (N=5, 23%) with the same number (N=5, 23%) calling for public and professional understanding. Other parents (N=4, 19%) would like to see greater professional awareness (see Table 19).

- , ...;. ~ Objective Five

Table 19: Future availability of services Future service Number Percentage Services within the educational 12 38% system • Diagnosis and treatment 5 16% Public and professional 5 16% understanding

~ Professional awareness 4 13% Special facilities 4 13% Financial assistance 1 3% Vocational training 1 3% Total 32 100%

----

Below are a sample of responses given to the above question.

Need for a remedial teacher for the child and for the sake ofthe teacher and class

Teacher training for those in national, secondary and remedial teaching. As ADD was not studied in college teachers think it does not erist ...--

Ifteachers don't know what ADD is they can't deal with it. It can't be left up to the parents to take on the schools

ADD children need to be able to sit exams separately. Perhaps they could build up a portfolio instead ofsitting the regular Leaving Certificate

Official recognition ofthis condition within the Department ofEducation

Need a code ofpractice in schools

Need to be taught social skills in schools --" One to one attention within class

Special class for children with ADD within the school

Classroom assistant, resource teacher, remedial teacher

Smaller classes within school, teacher training, inservice courses on ADD for teachers

~ Need for diagnosis and treatment

Suitable professionals

78 -

·--¥~~,_. . . >ii:~ , ... ·""'•"'' ., 1.-f-;; - ~ :~:'•'•:· ~..;:--·· r

Objective Five

- Need for professionals to be educated within the area

Greater professional awareness

Need for well informed and well trained professionals

Suitable residential care inclusive ofschooling and structure and staffwho understand ADDIH

Psychological service like that provided in Crumlin

Speech therapy, Occupational therapy

Domiciliary care assistance, financial assistance

Training so that X can go out and work

Strict protocol for diagnosis within the Department ofHealth

Availability ofcertai n medications in Ireland

Need for treatment and diagnosis .

Children need to meet once or twice a month with a psychiatrist to have their weight, height and blood pressure checked. They should have an EEG every six m'!nths

Correct medication

We want to be listened to, we have come across a lot ofopposition along the way

Need for and understanding ofthe individual aspects ofADD, not only look out for hyperactivity

Support from people such as public health nurses

In a follow up question, parents were asked who in their opinion should be providing such services. The answers given are as follows. A total of 19 out of21 (N=l9, 90%) respondents answered the question giving rise to a total of 37 responses.

Parents expressed that the Health Boards and the Department of Education should be responsible for providing services for people with ADD/H. The Department of Health and the Department of Justice should also provide services according to the respondents in this study. Of those who answered this question, six participants reported that it should be a combined effort between the Department of Health, the Health Boards, the Department of Education and the Department of Justice. These results are presented in the table below . .-

79 Objective F~e

Table 20: Service providers _j Service providers Number Percentage

Department of Education ll 30%

Health Boards 9 24%

Department of health 6 16%

Department of Justice 6 16% No comment 2 5%

National Coordinator 1 3% Specialists in ADD 1 3%

Psychiatrists, social workers 1 3% and psychologists

I Total 37 100%

The next section looked at support groups. Parents were asked if they attend a support group. -..J All respondents (N=21, 100%) answered this question positively (see Table 21).

Table 21: Number and percentage of parents who attend a support group

Number Percentage _J

Yes 21 100%

No 0 0% :

Total 21 100%

.-.:I When asked to give their comments a total of 16 parents (N= 16, 76%) gave their comments. Many people gave more than one comment, giving rise to 21 responses. Participants (N=l2, 57%) responded that they receive great support from these groups. Parents (N=5, 22%) reported that the support groups are also a great way to gain information on ADDIH and learn about the latest developments in the area. Many people (N=4, 17%) felt isolated before they joined the group, now they realise that they are not alone. (see Table 22).

-~ww. Objective Five

- Table 22: Comments on the support groups Support groups Number Percentage Great support 12 57%

Gain knowledge 5 22% Isolated for so long before 4 17% joined group

Total 2 1 100%

Below is a sample of comments to the above question

Realise ADD is nothing to be ashamed of

No help for parents outside ofth e Support Groups, keep coming up against a brick wall

Receive useful information, great to meet other parents and talk about the latest developments

Would be dead without it

Vital for parents. The group needs more support ifit is to get interest from the Department ofEducation · r Could receive financial assistance through information given out by support group Without groups parents are isolated and devastated r Went to group looking for help before son was diagnosed

Parents were asked if their child attends a support group. A total of21 parents (N=21, 100%) answered on 23 children (N=23, 100%). It was reported that none of the children attend a support group. The results are reported in the table below.

Table 23: Number and percentage of children attending a support group Number Percentage

Yes 0 0% No 23 100% Total 23 100%

81 Objective Five

A total of 18 parents (N=18, 86%) gave their comments. The majority of parents (N=15,

~ 71 %) believe that it would be beneficial for their child to .attend a support group. Some parents gave more than one response (see Table 24).

Table 24: Comments regarding children attending a support group Support groups Number Percentage Beneficial 15 71% Social gathering 2 10%

I More family orientated l 5% / Intimidated by group 1 5% Has contact with other ADDIH l 5% I children No comment 1 5% Total 21 100% ....,..,

------·· ------

Below is a sample of the responses given.

Group would be beneficial, it would have to be in a day centre with facilitator

These children know they are different, it is good for them to have support, otherwise they feel alone

These children need a support group so they can talk oftheir ftars, methods of coping, etc. They are a very vulnerable type ofpeople, they needfriendship and affection

There could be a provision for social evenings for children

A social club would be goodfor teenagers and older children to get together and talk

It is a good idea for children to join a support group. As ADDIH effects the whole family, support groups should be more family orientated.

The next section examines the level of knowledge in others of ADD/H. Parents were asked in their opinion how knowledgeable are the general public, school personnel, politicians, the medical profession of ADD/H. A total of 31 responses were given. In general, respondents felt that there is no knowledge (N= 14, 45%) regarding ADD/H. Some people (N=6, 19%) expressed the opinion that in areas where the support groups are active people are slowly becoming more knowledgeable. It was also noted by two participants (N=2, 6%) that

professionals have little or no knowledge on ADDIH and there is an unwillingness for the ~--'

r.·· -·" .. ~ ,.,... • ·~ ~-- , ,;-;,(i'p.~ ~- ·· ~~ ~ ~ ~·~··-~ ~~"W4'~_. __ "-s•e•::t:. ~ Objective Five

authorities to recognise it (N= l, 3%). The media was blamed for sensationalising ADDIH and reinforcing stereotypes. A couple of parents reported that. people think their child is bold. in the These results are displayed . table. .below.

Table 25: Reported level of public knowledge Public knowledge Nwnber Percentage No knowledge 14 45% Due to support groups people 6 19% are more knowledgeable Don't recognise it as a disorder 3 10% Public misunderstanding 3 10% Almost no professional 2 6% r knowledge People do not want to know 1 3% Authorities unwilling to 1 3% recognise ADDIH Psychiatrists most informed l 3% medical professionals Total 31 100%

Within the category of public misunderstanding, parents reported that people believed that they are bad parents or that their child is simply bold. Below is a sample of responses to this question.

People have no knowledge unless they are living with a person with ADDIH

Most people think that these children are just bold

Had to show X 's educational assessment to the neighbours so that they would believe me

People don 't understand

People focus in on the sensational aspects ofADDIH

Schools have no knowledge

General practitioners and psychologists have no understanding ofADDIH

~..,.... - Objective Five

Some people don 't accept it as a disorder

Because ADDIH presents itselfdifferently across the board, people don't recognise it.

Parents were then asked how knowledge of ADD/H could be increased. The responses given to this question can be broken down into five categories. These are __.

1. Through the media 2. Through appropriate teacher training 3. Through support groups 4. Parents need to educate others 5. Through professional training

All respondents (N=21, 10%) answered this question, with some giving more than one _J response. The total number of responses given was 30 (N=30, 100%). A total of eleven (37%) participants reported that knowledge could be increased through the media. ADD/H could be highlighted more on TV, on the radio, in the papers etc ... Another group of participants (N= IO, 33%) reported that knowledge could be increased through appropriate teacher training in ADD/H. Professional training was reported by five participants (N=5, 17%) which includes training for medical professionals including nurses and others such as the gardai. These results are displayed in Table 26.

._:;

·1!1 ... :::zM£d£ii&iiQZ.~ Objective Five

Table 26: How can lmowledge be increased Increase lmowledge Nwnber Percentage Media 11 37% Appropriate teacher training 10 33% Professional training 5 17% Support groups 2 7% r Parents educating others 2 7%

Total 30 100% r Below is a sample of responses to this question

Educated professionals in the area should be more visible and talk to the media

Teachers need to be trained in the area even at'play school level

People should be given an untreated ADDIH child to look after for a week

The Health Boards have a responsibility to train nurses and doctors

There should be more support groups set up around the country

Literature from the support groups should be available in general practitioners surgeries and libraries

Parents were asked if having a child with ADDIH has an impact on day to ciay family life. This question '\Vas answered by all participants (N=2l, 100%). A total of20 parents responded that it does impact on family life (N=20, 95%) with one parent responding otherwise (N=l, 5%). See Table 27.

Table 27: Number and percentage of participants reporting an impact on family life Nwnber Percentage

Yes 20 95% No 1 5% Total 21 100%

The main comments from those who responded that it does have an impact on family life included the fact that it is very stressful for the whole family, siblings are affected and it creates tensions bet\veen husband and wife.

85 Objective Five

Here is a sample of responses to the above question.

It is a daily endurance test

Very stressfol on relationships

Immediately judged as a bad parent and a dysfunctional family

The children have had to lock themselves in the bedroom for safety

Devastating... .. impacts on neighbours and people you interact with

Rarely get out as a couple

Ifchild is diagnosed, supported and medicated early it won't badly affect the family. Ifuntreated and severe it can result in a broken household

In past years I did not want to wake up in the morning

Heightens stress levels in the famlly especially when my child is not on Ritalin

Huge impact, affects siblings

Devastating, very restricting, can trust very few people with him

Can cause ructions in split seconds -

Finally parents were asked if they have any other comments to make for this report. A total of .._j 14 parents gave comments.

ADDIH has to be handled in a positive way. Kids cannot be ashamed ofit. Once treated it is easier to handle

Department ofHealth and Department ofEducation have to work more closely together

It is a major problem all over Ireland

We have to continue to make people aware ~·

I have become angry because the support system is not there for the child. It is negligence on the part ofthe professionals who don 't want to learn or provide services

The health system is letting people down

We need more support groups

··.-- t~~ ~"Z; Objective Five

"To the Department ofEducation, we would ask you to put in place now an educational system for all our children. To ourpoliticians, as parents ofthese children we feel very strongly that it is your moral duty to ensure that all the requirements that our children need be put in place immediately. What is the cost of education compared to the building ofprisons etc ... Prevention is better than cure."

Siblings need to be catered for. They need support and help

Wake up, support and listen to parents particularly in schools

There is a needfor recognition, care and treatment for those over 16 years ofage

Need for financial support

Those who are currently out ofschool, what is in place for them? Youthreach does ,..-. not meet their needs

Need ongoing support

Public need to be aware. Mothers andfathers need support

.- Life is coherent and structured however ifthere is a weak link in the chain ofsupport it will throw the child into disarray.

87 Objective Five_

8.3 Needs of Adults with ADD/H ' The next section details the experiences of adults who are ADD/H. A brief study methodology is presented followed by the findings of interviews with adults themselves or the parent of an ·adult with ADD/H.

Method Sample The sample of participants in this study includes adults with ADD/H. Names ofthese adults with ADDIH were given to the research team by the National Co-ordinator ofiNCADDS. c..:J

A total of five adults with ADD/H were interviewed for this study. However, only two adults spoke about their experiences directly (N=2, 40%) whilst three parents (N=3, 60%) spoke on behalf of their children.

Procedure

A Letter of Information and Consent was devised for this study (see Appendix B). This __, document outlines the nature of the study and asks for participants' consent. This letter was either read over the phone or read by each participant before becoming involved in the study. __! If read by the participants themselves, they signed it to show their agreement to participate in the study. If it was read over the phone, their consent was sealed with the researcher's signature.

A questionnaire was devised by the National Research Agency Ltd. for the purpose of this study (see Appendix D). For those participants answering about themselves, the original questionnaire was amended slightly to be more appropriate. Each participant was read the appropriate questionnaire and was encouraged to give as much infonnation as they felt necessary.

The majority ofthe interviews were conducted over the phone (N=4, 80%). The remaining one was conducted face to face upon the participants' request (N=l, 20%).

The questionnaire can be broken down into several broad sections, these are outlined on the next page.

88 Objective Five

L Demographics 2. Diagnosis 3. Current services 4. Contact with professionals 5. Medical treatments 6. Future availability of services 7. Public knowledge

1. Demographics Within this section parents were asked who in their family has been diagnosed with ADDIH

~d the age of this person/people. Questions including the age problems were first noticed and the age problems were first presented to a professional ·were also asked.

2. Diagnosis Questions concerning diagnosis, the professionals who made the diagnosis and the age of the child when diagnosed were asked.

3. Current services At this point, parents were asked whether their child is receiving an additional service and if so are they satisfied with this service.

4. Contact with professionals In this section questions regarding current professional contact concerning their child were asked.

5. Medical treatments Current use of drug treatments was explored in this section.

6. Future availability of services Parents were asked what services they would like to see available for their son or daughter and who should be providing such services

7. Public knowledge Questions were asked regarding public and professional knowledge of ADD/H. Parents were also asked in their opinion how this knowledge could be increased.

89 -- Objective Fi':e

Results A total offive adults with ADDIH were interviewed for this study. However, only two adults (N=2, 40%) spoke about their experiences directly whilst three parents (N=3, 60%) spoke on behalf oftheir children. There were four males and one female interviewed (N=4, 80%; N=l, 20% respectively). The age range is between 19 years and late 40s. It ·was reported that two participants (N=2, 40%) are adopted. Participants fell into the following age bands. This is presented in the table below. Y'

Table 28: Age of participants

AGE BANDS Number(N) Percent(%) j ""''

Late teens 1 20% 20s 2 40%

30s I 20%

40s 1 20% ~

Total 5 100% l

Participants were asked at what age problems were first noticed. Only one participant (N= I, 20%) reported always feeling that slhe was different. However it was not until slhe was reading up on ADDIH for his/her child that ADD/H was considered. Another participant became aware it was ADDIH at 45 years. The other three participants (N=3, 60%) noticed problems at three years, as a child and when they were very young (see Table 29).

Table 29: Age first problem noticed

Age Problem first Number Percentage noticed

3 years 1 20%

as a child 1 20%

Very young I 20%

31 l 20%

45 1 20%

Total 5 100%

'ti"1'~··. __... ·"'diiii·' ~.' >~- · ~ Objective Fiye

Participants were then asked at what age were these problems presented to a professional. The ages reported ranged from 'Never' (N= l, 20%) to '34 years' (N=l, 20%). A total ofthree participants attended a professional before and up to the age often (N=3, 60%). 1his infonnation can be seen in Table 30.

Table 30: Age problem first presented to a professional Age Problem first Number Percentage presented to a professional

Never I 20% 5 years 1 20% 8 years 1 20% l 10 years l I 20% 34 years 1 20% Total 5 100%

The next question examined whether or not a diagnosis of ADD/H has been received. The majority of participants have received a diagnosis of ADD/H (N=4, 80%). One participant has not yet received a diagnosis (N= l, 20%). This is outlined in the table below.

Table 31: Number and percentage of diagnoses received Diagnosis Number Percentage

Yes 4 80% No l 20% Total 5 100%

Participants were then asked what professionals made the diagnosis. The majority of participants have received a diagnosis (N=4, 80%). Of this number, a total of two participants (N=2, 50%) were diagnosed by psychologists with two participants (N=2, 50%) diagnosed by a psychiatrist .

91 Objective Five

T able 32: Who made the diagnosis? Diagnosed by Number Percentage Psychiatrist 2 50% Psychologist 2 50%

Total 4 100%

As was the case with children \vith ADD/H, not all ofthese diagnoses (N=4, 100%) were conducted in Ireland as one (N= l, 25%) was received in the United Kingdom. This can be seen in the Table below.

Table 33: Number and percentage of diagnoses received in Ireland and the United Kingdom Diagnosed by Ireland United Total Kingdom

Psychiatrist 2 (50%) 0(0%) 2 (50%) Psychologist 1 (25%) 1 (25%) 2 (50%) Total 3 (75%) 1 (25%) 4 (100%)

It is interesting to compare the age of the adult when the problem was first presented to a professional and the age when the diagnosis was received. A total of four adults (N=4, 80%) have received a diagnosis. One participant vvaited ten years for a diagnosis (N=l, 25%), one respondent (N=l, 25%) waited fourteen years and another waited 15 years. These results are displayed in the table below.

Table 34: Comparison between age problem presented to a professional and age of diagnosis Age problems Age diagnosed by Approx. difference in presented by years 5 years 15 years 10 years 8 years 23 years 15 years 10 years 24 years 14 years

alV~<'aYS knew 34 years undetermined

------

~**) 1.»-!!§t;;.,;:: '!!ftl! -~~ Objective Five

Participants were asked whether or not the school system effectively met their needs. All respondents (N=5. 100%) reported that their needs were nOt effectively met by the school system (See Table 35).

Table 35: Does the school system effectively meet your needs?

Number Percentage

Yes 0 0%

No 5 lOO%

Total 5 100%

Below is a sample of comments to this question

I was told I was stupid. I left school at 15 years ofage

I did my leaving Certificate, I grew up with teachers in myfamily and extended family

Left school at 15 years

Expelled from scho.ol a couple oftimes before the Junior Certificate. Couldn't cope at all in secondary school. Left school after the Junior Certificate

School was a disaster, expelledfrom jour difforent schools. Did well in small schools. At 15 years, educational psychologist reported that X is ofuniversity material. X is currently studying in third level education.

Participants were then asked ifthey are receiving an additional service. The majority of respondents are not receiving an additional service (N=4. 80%). It was reported that one person is receiving an additional service (N=l. 20%) (see Table 36).

Table 36: Number and percentage of participants receiving an additional service

Number Percentage

Yes 1 20%

No 4 80% Total 5 100%

It was reported that one participant (N= l. 20%) is receiving an additional service. It was reported that this person is attending a counsellor and is very satisfied with this service. The reason for such satisfaction is given below.

41 ¥ L

Objective Fiv.e

Counsellor has a good attitude, one ofaccepta nce

Contact with professionals was the next issue explored in the study. All of the participants

(N=S, 100%) answered this question with four adults (N=4, 80%) reporting that they do not have contact with professionals. Only one participant has contact \:Yith any professionals (N=l, 20%). See the table below

Table 37: Number and percentage of respondents who have contact with professionals

Number Percentage i Yes 1 20%

No 4 80% !

Total 5 100%

The professionals mentioned by the respondent who answered positively (N= l, 20%) are a counsellor and a psychiatrist (See Table 38).

Table 38: Professionals contacted by respondents Professionals Number Percentage

Psychiatrist l 50% .

Counsellor l 50%

Total 2 100%

------

The nex-t question examined the area of medical treatment. Participants were asked whether or not medical treatment was being received. A total of four participants (N=4, 80%) responded negatively with only one participant (N= l, 20%) responding positively. These results are displayed in the table below.

Table 39: Number and percentage of respondents receiving medical treatment

Number Percentage Yes I 20% I No 4 80%

Total 5 100%

------·----

Ritalin is the medication taken by the respondent (N= 1, 20%) receiving medical treatment, it was reported that such medication is very beneficial.

~ ~-- ---· Objective Five

The majority of respondents (N=4, 80%) responded that they are not receiving medical treatment. When they were asked ifthey would like to receive such treatment, all respondents (N=4, 100%) answered positively. Reasons for this are outlined below

Would like to take Ritalin as I have seen what it can do for my children

Would like to stop my mind racing

Don't know ifmy child will take it, needs a counsellor to tell him to take the medication and not to mix it with alcohol

The following section examined future availability of services. Participants were asked what services they would like to see available for adults with ADD/H. The services reported can be broken do\w into eight categories. Some respondents gave more than one response. l. Services ,-.,ithin the educational system 2. Professional expertise 3. Support groups 4. Diagnosis and treatment 5. Special facilities 6. Understanding among professionals 7. Prevalence Study 8. Appropriate psychiatric services

All ofthe participants answered this question. A total of eleven responses were given (N=lO, 100%). A total oftwo participants (N=2, 20%) would like to see more expertise in the area (see Table 40).

95 Objective Five

Table 40: Future availability of services

Future service Number Percentage Diagnosis and treatment 2 20% Professional expertise 2 20% Services within the educational 1 10% system Support groups 1 10% Special facilities 1 10% Professional understanding 1 10% I ! Prevalence study 1 10% l Appropriate psychiatric 1 10% l services

Total 10 100% l

~------

Below are some of the responses to this question

Understanding ofADDIH among the teaching professions and psychiatrists

Proper school psychological service

A clinic in Dublin

Prevalence study

There is a needfor expertise and educators in this field with regard to treatment and medication

Psychiatrists need to become more expert in the area

Need allocation ofa social worker to act as a link for a person with ADD, to act as an advocate

Need for a support group f or the entire family

Proper diagnosis

A management programme for ADDIH sufferers and parents

Current psychiatric service is diabolical

No place for X to go in the future

:;;:;:::z:e;mz_:t,..,.AG ca::as:;::.w Objective Five

In a follow up question, participants were asked who in their opinion should be providing such services. A total of three respondents answered this question (N=3, 60%) giving rise to five responses. Ofthis total two participants (N=2, 40%) responded that the Department of Health should be responsible for the provision of services. The Department of Children and the Family, the adoption society and the medical profession were also reported as being responsible for providing such services (see Table 41).

Table 41: Service providers r Service providers Number Percentage Department of Health 2 40% Department of Children and 1 20% Family Adoption society 1 20% Medical professionals I 20% Total 5 100%

Below are some of the comments on this question

Service~ have to be a legal right ofchildren. The Department ofChildren and Family have to be responsible that educational and medical services are available

Predominately a health problem

Medical professionals need to be aware and recognise that services should be provided r Adoption society has a responsibility in this area

Want availability ofs ervices without having to fight

The next section examines the area of support groups. Participants were asked ifthey attend such a group. Only two of the respondents (N=2, 40%) attend a support group while the remaining (N:::3, 60%) do not. These results presented in the table below.

Table 42: Number and percentage of participants attending a support group Number Percentage

Yes 2 40% No 3 60% Total 5 100%

97 Objective Five

Participants were asked in their opinion how knowledgeable are the general public, school personnel, politicians, the medical profession of ADD/H. A total of seven responses were given (N=7, 100%). In general, it was reported (N=3, 43%) that there is no knowledge or very little knowledge out there regarding ADD/H. A total oftwo participants (N=2, 29%) mentioned that some people do not accept it as a disorder. However two participants (N=2, 29%) reported that people are becoming more aware of ADDIH (see Table 43). Some people gave more than one response.

Table 43: Reported level of public knowledge Knowledge Number Percentage No knowledge 3 42% People won't accept it as a 2 29% disorder Growing awareness 2 29%

' Total 7 lOO% ' '

Below are a few of the comments on this question Only people who have children with ADD are aware. Health nurses are more aware ofADDIH than doctors who don't want to know about it

Growing awareness in the political arena _J

Teachers won't admit that it exists until they are trained

Some people don 't accept it as a disorder

~ General Practitioners do not care --'

Gardai are becoming more knowledgeable

Participants were then asked how in their opinion could knowledge of ADD/H be increased. A total ofthree respondents answered this question (N=3, 60%). All of the responses fall \\-ithin· the area of training and education. Teachers could be shown videos. These videos would be more beneficial ifth ey represented the Irish situation

Probation officers, prison officers and the Gardai need to be taught how to spot the key indicators

People need to be educated in this area

··~ ~··· · ;;;;;;; ~ ·······~~ Objective F.ive

The penultimate question examined whether having a member ofthe family with.ADD/H has an impact on day to day family life. This question was ariswered by all participants (N=5,100%) who all responded that it does impact family life (see Table 44).

Table 44: Number and percentage of respondents reporting an impact on family life Number Percentage Yes 5 100% No 0 0% Total 5 lOO%

Below is a sample of responses to this question

Since I have a label on it I am more relaxed and happier

It is a major threat to family cohesiveness

Older son had a difficult time in school due to his brother's behaviour

Big impact on the other children

Finally participants were asked ifthey have any other comments to make for this report. A total of four respondents (N=4, 80%) gave comments. These are as follows

I tried to get back into adult education but 1 had no concentration. However ifon Ritalin I could have sat, listened and learned

ADD spectrum is a disability. "ADD is like driving a car you don't know how to control"

Need for financial support

We need a better service for children

No services for adults or adolescents unless you commit a crime

I see no future for X

The findings for children and adults with ADD/H are summarised in the next section.

99 Objective Five

8.4 Summary of Objective Five Support Groups • There are eight support groups in Ireland, located throughout the coUDtry • These groups provide information and emotional sUpport to families of children with ADDIH • These groups also run telephone helplines • These groups meet with goverrunent ministers

Needs offamilies ofpersons with ADDIH e The majority of children under discussion were male and aged between five and 18 years • In the majority of cases, a problem was first noticed before the age ofthree years • The majority of children had been diagnosed as ADDIH, however some parents waited up to eleven years to receive a diagnosis or traveled to the UK for a diagnosis • In the majority of cases the school did not effectively meet the needs of children with ADD/H, it was very much dependent on the particular school or teacher • Currently, the majority of children have contact with a professional either a psychiatrist or a clinical psychologist • The majority are currently on Ritalin and 16 out of 18 who are recei.. ing medical treatment find it beneficial, or want an additional drug prescribed • There is a need for services within the educational system as well as improved diagnostic and treatment facilities • Primarily the Department of Health and Children and the Department of Education and L Science should be responsible for the provision of service

• The~e is a need for support groups for children • There is a need for a greater understanding of the disorder among professionals and the general public

Adult opinions • Adults received a diagnosis much later in life, one person waited 15 years for a diagnosis • No one felt that the school system effectively met their needs as children • Only one adult has contact with a professional • Only one adult is receiving medical treatment although the majority would like to opportunity to undergo medical treatment • ADD/H had impacted greatly on their family life

100 Objective Five

8.5 Case Studies· Some case studies are presented in this section in order to highlight the problems families of children and adults with ADDIH have encountered over the years. The names ofthe individuals of some details have been changed in order to protect their identity.

Sam 'Nightmare' is the word one mother used to describe the first 15 years of her son's life. Having recognised Sam experiencing problems when he was ten months old and following many attempts to get help, his mother did not receive a diagnosis for his problem for another 14 years. She apportions much of the blame to the "appalling" psychiatric services that she found herself in contact with in these years. At one stage Sam was recommended speech therapy as a solution to his problems.

Trouble in the playground and disruption during the school lunch hour resulted in Sam having to move schools. This violence was also evident at home as more and more domestic difficulties arose.

After several professional opinions, Sam' s mum said she felt the finger was being pointed at her. She wondered ifSam's problems were family related and whether the whole issue was a parental one. Having sought help from professionals here and in England, Sam was prescribed a combination of drugs.

Sam has contemplated suicide. Sam became aware of ADDIH while listening to a radio programme about the disorder and felt as though the programme might as well have been about him.

Mwn believes the general public, school personnel, politicians and the medical profession are not aware of ADD/H. There has been more publicity for ADDIH recently and the word is being spread. She said, "There are people out there who don't want to know about ADD/H. They have the impression that it's a middle class spoilt kids problem, so ·we have a battle on our hands. We need to spread awareness and get training to primary school teachers."

101

- ~ Objective Fiv~

Noel At seven months, Noel's mother was concerned at the amount of time he spent crying. A specialist told her that he was the type of baby who cried a lot. He was never accepted in school. In fact, one playschool asked her to remove him from the school. He constantly caused trouble and was very disruptive. Things were terrible at home and there were problems with the neighbours.

In fourth class, Noel's teacher asked his mother if he would attend the school psychologist, which he did for one year. However, the psychologist made reference to Noel's 'dysfunctional family' and told his parents their parenting was inadequate.

He was then referred to a psychologist and ADDIH was identified, eleven years after problems were first noticed. Noel was prescribed Ritalin, but to no avail. The dose was increased, but his condition did not improve. A combination of Ritalin and Clonidine proved more successful. His behaviour changed dramatically.

Mum describes herself as being near breaking point. She has no back up or support services. Her recommendations for children with ADDIH include residential care for these children,

supported by a schooling structure and staff who know how to deal with the problem. "My own social worker did not kno\v what ADDIH was. In the US, they have residential care. Here, we have detention homes. We need informed and well trained professionals in this country", she said.

Noel's mother believes the health boards, social workers, psychiatrists and psychologists should work with the Departments of Education and Justice in tackling ADD/H. She believes it would be beneficial for her son to be in contact with another 'ADDIH child'. The media, radio, television and newspapers could do more to spread awareness. In Noels' case, the Gardai are helpful. A liaison officer attends meetings to learn more about ADDIH and follows this up with visits to Noel's home.

102

«.<.~

James A drink problem, drug involvement, threatening people an4 a prison sentence at a very young age are just some of the problems experienced by one man with ADD/H.

James displayed odd behaviour as a child and as things worsened, his parents sought professional help when he was just ten years of age. He was diagnosed as having a personality disorder. His parents had read up on ADDIH and suggested the possibility of James having this disorder to his GP. Many years later a doctor in the UK diagnosed Jarnes as having ADDIH nine months ago.

A support group for parents of children ·with ADDJH has been set up in his area. However, it came too late for James' family. James is not willing to tackle his problem. He told his father that a support group "can do nothing for him".

Jarnes has never worked and has no qualifications. Having ADDIH has made him very vulnerable. He now has a barring order preventing him from returning home.

103 - - Objective Five

Martin "I know things shouldn't be the way they are. I get so angry because the support system is not there for my child. I'm so frustrated and demented. The professionals were negligent. They don't want to learn about ADDIH or provide the necessary services. Ifmy son could have been diagnosed earlier, we could have avoi~ all this pain". These strong words describe how one mother is coping with ADD/H.

Martin was experiencing difficulties at two years of age. After seeing many professionals during childhood no one could say what was wrong.

He was expelled from primary school. As early as ten, he was dabbling in drugs and drinking Martin's school had realised the extent ofthe problem. The school paid for him to see a psychologist who tried behaviour modification and family therapy, but Martin's condition deteriorated. He also introduced many of his neighbours' children to drugs.

In his early teenage years, he was a familiar face with the Gardai. He \\'35 renowned for small robberies, taking drugs and fighting. Martin's mother said, ''The Gardai were very tolerant and understanding, even in his early violent days. The Gardai offered me support.

When Martin was 15, his mother was suggesting ADDIH to doctors. At 17, his drug habit had worsened and he had become more aggressive. The support group recommended that he undergo an assessment, and in February 1998, he attended the Assessment Centre in the UK. At 18 years of age, he was diagnosed ''with severe ADD, conduct disorder".

His mother said, "I would like to see a daycare centre with trained people who know about

ADD and have received social skills training to deal with it. I \Yn>te to the health board and enclosed a report from England. I'm still waiting for a reply with their recommendations." One psychiatrist specialising in adult care told her she was an overprotective mother and said · that Martin's problems would diminish ifhe obtained a job.

104

------~ Objective Six

9. Objective Six To interview key personnel involved in developing curricula and specialised vocational programmes for chUdren and adults with ADDill and investigate the resources needed to implement such programmes in Ireland. Particular attention wUl be given to the development ofa curriculum for young adults with ADDIH and the work of Youthreach.

This section defines the Youtbreach Service in the country. This section is relevant to this study because many adolescents with ADDIH cannot cope within the secondary sch~l system and often attend Youtbreach Centres during the day instead of formal schooling. However, there are no specialised vocational programmes for children and adults with ADD/If.

9.1 Youthreach Services There are over 70 Youthreach Centres provided by VECs around Ireland catering for approximately 2,814 adolescents between the ages of 15 to 18 years. This service is for adolescents who have left school early with no formal qualifications. Youthreach services are provided in an out-of-school setting. Youthreach courses have a one year Foundation Phase and a second year Progression Phase. A training allowance is paid, this is between £25-64.50 per week depending on age:

The key characteristics of a Youthreach centre as a follows; (taken from a presentation by M. Kelly, Department of Science and Education, June 1998)

• A focus on the holistic development of the ~dividual • A team approach to the running ofthe centre, with staff agreement on a mission statement and centre policies, and with the delivery of the programme subject to ongoing self appraisal and review • A safe learning environment • A programme which is participant centred and participant led • Staff open, facilitating and animating rather than teaching • A focus on the core competencies of literacy/numeracy, communications, teamwork, analysis and decision-making • A range of vocational disciplines with new technologies • National certification • A strong community base and good contact with local agencies

105 Objective S~

Developments for Youthreach according to Kelly ( 1998) include the adaptability to cater for persons with special needs. Currently there is little in the V¥ay of support or psychological services within Youthreach, especially in centres located outside of Dublin. This is outlined in the section below. A second development is the provision of capital in areas where the infrastructure to provide Youthreach services is not in existence. Multiplexes may be developed which will house a variety of community services or old premises which could be upgraded or revamped. The development of multiplexes to provide community services are designed in such a way as to allow for the changing needs and demands of service-users.

Within the County Dublin Vocational Education Committee (CDVEC) area the equivalent of two full-time counselling psychologists are employed in these centres. Apart from the CDVEC area, in general, adolescents in other Y outhreach locations do not have access to psychological support. However, ifthey do receive psychological support it is on a very occasional basis. A task force has examined the counselling and psychological service requirements of the centres to prepare a plan for improvement in the context of additional ESF provision of l million ECU arising out of the Mid -Term Review ofEU structural funds.

The proposals contained in the Report for the development of Guidance, Counselling and Psychological Services for Y outhreach recommend that the emerging provision for Y outhreach Centres should be compatible with and related to developments in the provision of a New National Educational Psychological Service. In addition to counselling provision there is also a need to consider support for staff in dealing with issues and problems which are likely to arise. Access to an educational psychologist from time to time is seen as part of the various supports for the centres. There will also be a need for psychological assessments according to the National Educational Psychological Service, Report ofPlanning Group (1998)

When the above systems are operational and Youthreach staff have received additional support and training Youthreach centres may then be able to deal with the needs of persons with ADD/H.

An interview with Dermot Stokes, National Co-ordinator, Youthreach revealed that there are currently no specific programmes for young adults with ADDIH in Youthreach Centres. There is anecdotal evidence from staff that individuals with ADDIH have attended Y outhreach

Centres, however these were. the individuals most likely to 'drop-out' ofthe system.

106 Objective Six

The National Co-ordinator was asked about the poSSibility of developing a curriculum specifically targeting adol~cents and young adults with ADD/H. While the National Co ordinator saw no problems in designing a tailor-made curriculwn for persons with ADDIH it is essential that a national prevalence study be conducted first in order to ascertain precise nwnbers of young adults with ADD/H. Moreover, Youthreach staff would need training in dealing with young adults with ADD/H.

Currently, Youthreach educational curriculums are not highly structured and are very flexible. In essence this does not suit the young adult with ADDIH who is more suited to a structured environment. However, by virtue ofthe fact that Youthreach centres are flexible it may be possible to accommodate those with ADD/H.

To conclude, Youthreach services will have psychological services that may be able to identify young adults with ADD/Hand be able to cater for their needs. The possible development of multiplexes to house community services as well as Youthreach services may provide the structure needed to provide services to young adults with ADD/H and assist the creation of a learning environment. The National Co-ordinator ofYouthreach is amenable to creating a specific curriculwn for adolescents and young adults with ADD/H. However, it is worth remembering that resources and time will always be limited. Demand will also strongly dictate the nature ofYouthreach programmes. Currently there is a lot of work available to young men attending Youthreach centres on building sites etc. and there are more women attending Youthreach centres.

107 Objective Six

9.2 Summary of Objective Six • Anecdotal evidence suggests that youths with ADDIH attend Youthreach services • These youths are the ones most likely to drop-out • There is a need for a national prevalence study in order to identify those with ADD/H • The National Educational Psychological Service. Report ofthe Planning Group (1998) has advocated that emerging provision for Youthreach centres are compatible with and related to developments in the provision of a new National Educational Psychological Service • It would be possible to design a specific curriculum for youths with ADD/H attending Youthreach centres.

108 Objeaive Seven

10. Objective Seven To investigate the situation through the Irish Medicines Board and practicing medical consultants regarding medications for persons with ADD/H. Secondly to determine which medicines are being widely used to treat ADDIH an.d its eo-morbid conditions in other countries. Ifinformation regarding medict1l treatments for persons with ADDm in Ireland is not available to investigate what conditions need to befulfilled to enable these medications to become available in Ireland.

The medications prescribed for children with ADDIH in Ireland is discussed initially, including documentation received from NOVARTIS, the pharmaceutical company supplying the drug Ritalin to the Irish market. Information from the Central Phannacy is also presented. The use of medication in the treatment of adult ADD/H is also briefly reviewed. This is followed by a review of medical treatments available in other countries, namely the US and the UK.

.· 10.1 Use of drugs in Ireland for the treatment of ADD/H Medications for children with ADDIH As outlined in the earlier sections of this report children with ADD/H in Ireland have received medical treatment. In the evaluation of ADD/H services at Our Lady's Hospital, Crumlin the majority of cases had received medical treatment for the disorder. Of the 22 respondents 14 parents indicated that their child had received medical treatment, the majority were taking Ritalin (N= ll ), two were prescribed Clonidine and another was prescribed Dexedrine. Parents were asked to indicate the effect of medication, the answers were as foUows, (these comments are also presented in an earlier section describing the ADD/H service available at Our Lady's Hospital, Crumlin) • the behaviour problems had gone since the introduction ofmedication • child was showing greater awareness on what was going on around them • parents believed they had seen a dramatic positive change in the social and educational aspects oftheir life and at home

In the study investigating the needs offamilies of children with ADD/H the majority had received medical treatment also, that is, 18 children from the 22 respondents were prescribed medication as part of the treatment process for ADD/H. The type of medications prescribed are presented in the table below. This table was also presented in the section pertaining to Objective 5. The majority were prescribed the drug Ritalin. A total of 16 parents (89%) found the treatment beneficial. As outlined earlier the other parent was unsure as to the benefits ofthe

109 Objective Seven drug and wanted her child's appositional-defiant behaviour treated also. The remaining parent felt the medication was of benefit for a short period only and wanted the drug Clonidine to be prescribed also.

Number and percentage of children taking different types of medication

Type of medication Number Percentage

Ritalin 13 72% Clonidine 2 ll% I Ritalin and Clonidine 2 11% l Ritalin and Respiradone 1 5%

Total 18 100%

As this point it is important to emphasis the drug treatment is only part ofthe overall treatment process which is multimodal in nature and should include, where appropriate, psychological intervention, education and medication. The documentation from NOVARTIS also indicated that "our product authorisation states clearly that the product should only be used as a part ofa comprehensive treatment programme for ADHD when remedial measures alone prove insufficient. In addition, treatment must be under the supervision ofa specialist in childhood behavioural disorder''.

As can be seen from the above Ritalin or methylphenidate is the most popular medical treatment for ADDIH and as outlined by NOVARITS Ritalin "is indicated in the management ofattention deficit hyperactivity disorder (ADHD) in children over the age of6 years". NOVAR TIS were contacted in an attempt to identify the amount of Ritaiin supplied to the Central Pharmacy. NOVARns supplied the following information:

"Given the stimulant nature of the drug, it was agreed with the Department of Health that it should be supplied to the Irish market only via the Central Pharmacy in St. Mary's Hospital, Phoenix Park, Dublin 20. Pharmacists can only source the product on behalf of prescribers/patients through direct contact with the Central Pharmacy, as it can not be purchased via conventional wholesaler clumnels. As such, we therefore directly supply the Central Pharmacy with the product based on their specific order requests. In 1998, we supplied approximately 10,000 units (1 unit= 1 pack of30, lOmg tablets) to the Central Pharmacy".

HO ,.,. r Objective Sev:en

NOVARTIS also state that «we do not promote the product in any way in Ireland, in the interest ofsafety we do however provide extensive product information to prescribers on request".

As there have been no prevalence studies of ADDIH in Ireland it is difficult to comprehend the amounts ofRitalin supplied to the Central Phannacy. The medical director ofNOVARTIS also stated that there has been an escalation in the supply of Ritalin over the last two-three years.

Central Pharmacy The Central Pharmacy was also contacted about the supply of Ritalin to the Irish market. The Chief Pharmacist concurred with figures supplied by NOVARTIS. The Chief Pharmacist also concurred that there had been an increase in the supply of Ritalin in the last few years. The supply of Ritalin has "increased threefold in the last few years" according to the Chief Pharmacist.

New procedures were being put in place in the Central Pharmacy to monitor the supply ofthe

drug, Ritalin. A database ~f demographic and individual dosage information will be maintained in order to ascertain a profile of the drug use. Currently the Central Pharmacy cannot monitor the use ofthe drug in a discriminatory fashion as there are no prescription details given only a written request for the drug and the appropriate fee.

Medication for adults with ADDIH

In the study investigating the needs of families of adults with ADDIH only one adult was

currently taking medication ~illch was Ritalin. This individual found the treatment to be very beneficial. The source ofthe prescription was the UK. Adults indicated that they would like the opportunity to try the drug. In this country a psychiatrist indicated that Tofranil was generally used as part ofthe treatment process for adults with ADDIH, however, it was less effective than Ritalin.

Ritalin is currently not licensed for use with Adults in Ireland. This is due to its addictive .- nature and the fact that it has the potential to be abused. The licensing of drugs in Ireland is "possibly the most restricted in Europe, ifnot the world'' (NOV ARTIS).

Ill Objective Seven

Contact was also made with the Irish Medicines Board regarding the availability of drugs used in the treatment in ADD/H. The Irish Medicines Board made reference to the three-monthly list of drugs available in Ireland. Any new drug licensing would require an application to the Irish Medicines Board for authorisation. The Irish Pharmaceutical Healthcare Association stated that drug companies generally decide on what product to market and this is proceeded by an application to the Irish Medicines Board for product authorisation including strict medical trials and safety and efficacy studies.

--'

.....;

__;

--J

-.1 . 112

~ '"--"''·17~.'1!" ::;;:r; ;.a~ :;;:z;:;:;::: Objective Seven

10.2 Use of drugs in the US for the treatment of ADD/H Drug treatment for persons with ADDIH include stimulants and antidepressants. Contact with experts in the States indicated that there was a possibility that drugs had been somewhat over prescribed in the US. There are approximately four million school-aged children with.ADD/H on medication, this accounts for approximately six percent of all school-aged boys and two percent of all school-aged girls.

In the US it is estimated that currently 100,000 school-aged children are being treated with this combination of medications, despite little research evidence but considerable clinical evidence to support the use of this combination drug. Many clinicians treating children with Tourette syndrome and ADDIH have found this drug combination helpful in some cases.

I. Ritalin can be prescribed to adults with ADDIH in the US. According to one expert in adult ADD/H the most important part of treating aduh ADD/H is to ensure that the disorder has been properly diagnosed ensuring that the adult had childhood symptoms of ADD/H and current functioning is also impaired. The diagnosis and treatment of adult ADDIH has not r been fully researched. Research into the development of non-stimulant medication for the treatment of ADDIH is currently ongoing in the Child Development Center, University of Irving, California.

The success of the stimulant drug treatments have been established through controlled trials with thousands of patients in the US (e.g., Wilens & Biederman, 1992, Swanson et al., 1993). Stimulant medications reduce the symptoms of ADHD and HKD, about 80% of patients have clinically meaningful benefits and despite some common side-effects which can be reversed (decreased appetite, presence of tics) the medications are safe. The prescriptions of such medications are always on an initial trial basis as recommended by the US National Institute of Mental Health mulimodality treatment study of ADHD. If Ritalin does not produce a clinically meaningful response other stimulants are tried. Ifunsuccessful a trial oftricyclic antidepressants are recommended. The following drugs are also prescribed: clonidine carbamaxepine, amfebutarnone, venlafaxine, and respiradone. "Combinations of phannacological and psychosocial treatments (i.e., behavioural parent training and behavioural interventions for the classroom) for ADHDIHKD are generally recommended on the basis that

multiple areas of impairment require multiple modalities of treatment. The best strategy is not _ yet known and large prospective studies of the efficacy of multimodality treatment of ADHD in North America and in Europe are still in progress (Swanson et al, 1998, p.431).

113

=:::;; a ;ac e_ CJWAA * Objective Seven

10.3 Use of drugs in the UK for the treatment of ADD/H As in the US stimulants and antidepressants are used in the treatment of ADDIH, with Ritalin and Dexedrine being the most commonly used drugs. However the medication usage between different countries is striking. Correspondence between the Learning Assessment Centre in the UK and Irish ADDIH support groups revealed that the figure of 0.03% ofUK schoolchildren on stimulant medication compares markedly with a similar one percent for Australia and two three percent for North America. This under-medication in the UK is even more striking when one considers that up to one percent ofUK schoolchildren have severe ADHD.

As in the US medication is always suggested as an initial trial and is carefully monitored. Medication is only continued ifthere are positive results with insignificant side effects. Dr Kewley of the Learning Assessment Centre went on to say the fine tuning of dosage and timing is crucial to effective management of the disorder. ADHD is such a complicated and variable condition that occasionally the use of a second medication is required.

A summary of the pharmaceutical treatments for ADD/H in Ireland and in the US and UK is presented in the next section

114 --

.ut so;: ::;:;;;ww.w~* Objective Seven

10.4 Summary of Objective Seven Pharmaceutical treatment ofADDIH in Ireland • The evaluation of ADD services available in Our Lady's Hospital Crumlin revealed that the majority of those who took part in the study had medication prescribed for their child, and the majority found the medication very beneficial. • The study conducted to investigate the needs of families of children with ADD/H also indicated that the majority had drug treatment prescribed for their child and the majority of parents found the treatment very beneficial. • Ritalin was the most commonly prescribed drug for children with ADDIH in Ireland Parents also wanted a combination of drugs prescribed for their children to treat oppostional-defiant behaviour, namely Ritalin and Clonidine • In 1998, NOVARTIS directly supplied the Central Pharmacy with approximately 10,000 units ofRitalin (1 unit = 1 pack of30, lOmg tablets). • The ChiefPharmacist concurred with the figures from NOVARTIS regarding the supplies of Ritalin to the Central Pharmacy • There has been an increase in the amount of Ritalin prescribed in Ireland according to the Chief Pharmacist • New procedures were being put in place in the Central Pharmacy to monitor the supply of the drug Ritalin. • Only a few adults with ADDIH in Ireland are currently taking medication, namely Ritalin, mostly prescribed in the UK. Ritalin is not licensed for use with adults in Ireland, however

some adults Y~ith ADD/H would like the opportunity to try the drug and by and large have r to go to England for a prescription. The cost of which is approximately £1000.00 for the journey r Pharmaceutical treatment ofADDIH in the US and the UK • Research studies in the US have found drug treatment for ADD/H to be very beneficial • Drugs are always prescnl>ed on a trial basis as recommended by the US National Institute of Mental Health multimodal treatment study of ADHD • Ritalin and Dexedrine are the most commonly used drugs to treat ADD/H in the UK • There is an under-medication of ADD/H in the UK according to a Consultant Paediatrician • ADD/H is best treated by a combination of pharmaceutical and psychosocial interventions

115 -:~ r

Objective Eight, Nine & Ten

11. Objective Eight, Objective Nine and Objective Ten To identify the qualifications, experience and special training ofstaff in the area To identify key personnel who train others in thefield ofADDIH To review GP knowledge ofADDIH as General Practices are often the sole supporters of families with persons with ADDIH

Information for this section was compiled from findings throughout the report. It is apparent from the report that there is no specific teacher training course in the area of ADD/H and in general, GPs are not very aware of the disorder. This is briefly outlined in the section below.

The review of the literature clearly specified that ADD/H affects 3-10% of school aged children so its imperative that teachers can cope with children with the disorder. Teachers also play a vital role in diagnosing a child \Vith ADD so it is important that they are adequately trained. There needs to be provision made in the syllabus ofteacher training colleges for training teachers about the disorder. Remedial teachers also need to be trained in recognising and coping with the disorder and also in helping children with ADD/H manage their own behaviour. In this study remedial and resource teachers had never heard of ADD/H in training.

In this study parents are requesting teachers who are educated about ADD/H. The study revealed that teachers are becoming more aWa.re of the disorder due to the presence of educational psychologists in schools. However teachers who are aware of the disorder may not have the necessary skills to cope with a child in class.

Parents stated 'schools are not equipped to deal with ADD/H,. Teachers are not being taught about ADD/H. There is a need for official recognition ofthis disorder ""ithin the Department

of Education. Adults with ADD/H reported that the school system did not meet with their needs. Staff providing vocational educational services also need to be trained about the

disorder as it was clear from the report that staff in Youtbreach centres have not received any · training about the disorder.

There is a need for widespread education for the medical profession to urgently increase awareness ofthe condition. There is a need for continual professional development. Health boards have a responsibility to train doctors and nurses in the area ofADD/H. In the study . investigating the needs of parents of children with ADD/H only two children were attending their GP, who administers and monitors medication.

-J 116 a::- - _::ue::; )'1!11(,,...,_._ ··- ~ ~ -~ -~ ..::= References

12. References

A National Educational Psychological Service. (1998). Report of planning group. Government publications, Stationary Office, Dublin.

Alberts-Corush, J., Faraone, P., Goodman, J. T. (1986). Attention and irnpulsivity characteristics ofthe biological and adoptive parents ofhyperactive and normal control children. American Journal of Orthopsychiatry, 56, 413-23.

American Psychiatric Association. (1980). DSM-111 Diagnostic and statistical manual of mental disorders, 3rd edition. Washington DC: American Psychiatric Association.

American Psychiatric Association. (1994). Diagnostic and statistical manual ofmental disorders, 4th edition. Washington DC: American Psychiatric Association.

Barldey, R. A. (1994). ADIHD in adults. Program manual accompanying AD/liD in adults videotape. New York: Guilford Press.

Biederman, J. et al (1990). Family- genetic and psychosocial risk factors in DSM Ill attention deficit disorders. J. AM Acad Child. Ado/. Psychiatry, 29, 526-33.

Biedennan, J., Faraone, S. V., Spencer, T., Wilens, T. E., Norman, D., Lapey, K.A., Mick, E., Lenman, B., Doyle, A. (1993). Patterns of psychiatric comorbidity, cognition and psychological functioning ~adults with Attention Deficit Hyperactivity Disorder. American Journal ofPsychiatry, 150, 1792-1798.

Biedennan, J., Faraone, S. V., Mick, E. et al. (1996). Attention deficit hyperactivity disorder and juvenille mania: an overlooked comorbidity? JAm Acad Child Adolesc Psychiatry, 35, 997-1008.

CHADD Facts Four. (1991). Children and adults with attention deficit disorders. Educational rights for children with ADD. 499 Northwest 70th Avenue, Suite 101, Plantation, Florida, 33317

117 Referen~

Cosgrove, P. V. F. (1997). Attention Deficit Hyperactivity Disorder, AUK Review. Primary Care Psychiatry, 3, 101-113.

Fitzgerald. M. (1998). Adult attention deficit hyperactivity disorder. Ir J Psych Med 15 (3), 82-83.

Fosner, M. I., Raichle, M. E. (1994). Images ofmind. New York: Scientific American Library.

Gill, M., Daly, G., Heron, s., Hawi, Z., Fitzgerald. M. (1997). Confirmation of association between attention deficit hyperactivity disorder and a dopamine transporter polymorphism. Mol Psychiatry, 2, 311-313.

Gillis, J. J., Gilger, J. W., Pennington, B. F., DeFries, J. C. (1992). Attention deficit disorder in reading- disabled twins: evidence for a genetic etiology. J abnormal Child Psycho/, 20, 303-15.

Gittelman, R, Mannuzza, S., Shenker, R., Bonagaur, A. N. (1985). Hyperactive boys ahnost grown up. 1. Psychiatric status. Arch Gen Psychiatry, 42 (10), 937-947.

Hechtman, L. (1992). Long term outcome in Attention Deficit Hyperactivity Disorder. Psychiatr Clin North Am, 1, 553-565.

Hinsbaw, S. P., March, 1. S., Abikoffh. et al. (1997). Comprehensive assessment of childhood

attention deficit hyperactivity disorder in the context of a multisite, multimodality clinical trial. J Attention Dis, 1, 217-234 --'

IMPACf (Irish Municipal, Public and Civil Trade Union) (1996). Supporting Chl1dren - A psychological Service to schools. Dublin. Impact.

Kelly, M. (1998). Presentation. Department of Education and Science.

Martin, M. (1998). Press release. Department of Education and Science.

Moore, K., O'Donovan A (1998). Adult attention deficit disorder.lrish Medical Times, p. 30.

118

;;...- __.. ,..:~~ ~:"'._;;;1'#' ~· .. ,~· ,~-...J References

Murphy, K, Barkley, R. (1996). Prevalence ofDSM-IV symptoms of ADD in adult licensed drivers: hnplications for clinical diagnosis. Journal ofAttention Disorders, I, 147-161.

Neville, D. (1998). Giving people a life. Draft Fine Gael Policy on ADHD.

Special Education Review Committee (1993). Report, Government publications, Stationary Office, Dublin.

Swanson, J. M., McBumett, K. Wigal, T. et al (1993). Effect of stimulant medication on children with attention deficit disorder: a "Review of Reviews". Exceptional Children, 60, 154-62.

Swanson, J. M., Lemer, M, Williams, L. (1996). More frequent diagnosis of Attention Deficit Hyperactivity Disorder, New England Journal ofMedicine, .3.33, 944.

Swanson, J. M., Sergeant, J. A., Taylor, E., Sonuga-Barke, E. J. S., Jensen, P. S., Cantwell, D. P. (1998). Attention -deficit hyperactivity disorder and hyperkinetic disorder. The Lancet, 351,429-433.

Toone, B. K., Van der Linden G. J. H. (1997). Attention deficit hyperactivity or hyperkinetic disorder in adults. British Journal ofPsychiatry, 170, 489-91.

Wender, P. H. (1985). The Utah criteria in diagnosing attention deficit disorder. Psychopharmacological Bull, 21,222-31.

White Paper on Education ( 1995). Charting our Education Future. Govermnent publications, Stationary Office, Dublin.

WHO. (1993). The ICD-10 classification ofmental and behavioural disorders: clinical descriptions and diagnostic guidelines, 1992; diagnostic criteria for research. 1993: Geneva: WHO.

Wilens, T.E.,Biederman,J. (1992). Thestimulants. PsychiatrClinNorthAm,15, 191-222.

119 - References

Zametkin, A., Mordahl, T. E., Grois, M., King, A. C., Semple, W.E., Rumsey,. J.~ Hamburger, S., and Cohen, R M. (1990). Cerebral glucose metabolism in adults with hyperactivity of childhood onset. New England Journal ofMedicine, 323 (2), 1361-1366.

120

-~- ...... ----:..u~~-- ..t.~ ~~ !!!:':''' '~ "':!'m .fi!I/IW"''' •.- ,,.,_ Appendices

Appendix A

121

-;~.::;:( ;eo ...... 44J)!A Appendices

'Evaluation of the ADD/H Services provided at Our Lady's Hospital

The purpose of this questiormaire is to gather infonnation about the ADDIH service provided in Our Lady's Hospital. This evaluation will give a better understanding of the needs of ADDIH suffers and their families and will enable Our Lady's Hospital to develop additional ADDIH services.

ABOUT YOUR CHILD 1. Within your family who has been diagnosed as having ADDIH? Son (j Daughter (j

2. What age is slhe? ---~years

-J 3. At what age was the problem first noticed? ----...Jears ______,ears 4. At what age was your child diagnosed? ....J

5. What level of schooling is the child at? (please @1) Primary (j Secondary (j

6. Who made the diagnosis?

7. Who referred you to the ADHD service at Our Lady's Hospital?

8. Have you tried any behavioural strategies at home?(please lil) Yes (j No (j

9. What techniques have you found most helpful, please specify below

10. What has been the effect on your child's education?

122

~-. ~---·-- Appendices

11. Does your child have additional needs beyond what this service provides which need to be met? (e.g., educational & childcare support) (please OO)Yes Cl No Cl

Any other comments______

ABOUT THE SERVICES RECEIVED 1. Please tick (00) from the list below the services you have received at Our Lady's Hospital. Also rate your satisfaction with each of the services received

(a) Assessment by a consultant Yes [J Satisfactory [J (e.g., paediatrician, No [J Neither c neurologist. psychiatrist) Unsatisfactory c (b) Were medications Yes [J Satisfactory [J prescribed? No [J Neither c Unsatisfactory [J ( c ) Psychological services Yes [J Satisfactory [J No [J Neither c Unsatisfactory [J (d) Information from parent Yes c Satisfactory c support group/conferences. No [J Neither [J Unsatisfactory c (e) Education About ADD/H Yes [J Satisfactory [J No [J Neither c Unsatisfactory [J (f) Strategies to address problem Yes [J Satisfactory [J behaviour No [J Neither c Unsatisfactory_ [] (g) Counselling for parents Yes [] Satisfactory [] No [J Neither [J Unsatisfactory c (h) Counselling for children Yes [J Satisfactory [J No . [J Neither [J Unsatisfactory [J (i) Film service Yes c Satisfactory c No [J Neither [J Unsatisfactory c (j) C.P.T. computerised test Yes c Satisfactory [J No c Neither c Unsatisfactory c (k) Intelligence test/ review of Yes c Satisfactory [J test by a psychologist No [J Neither [J Unsatisfactory [J (l) History taking - Yes [J Satisfactory c medication/education No c Neither c Unsatisfactory c

123 Appendices

ABOUT MEDICATIONS -Ifyour child is taking medication

1. What medication is your child t~ng? ------

2. Have you seen changes in your child's behaviour as a result of medication? (quality of homework improved, calmed down; etc) (please @1) Yes 0 No a

Any other comments. ______

3. Do you think medications can help improve your child's overall welfare? (e.g. relationship with peers, education) (please liJ) Yes a No 0

Any other comments______

'- 4. Have there been any disadvantages to the medications? (please ~)Yes 0 No 0 Any other comments______

ABOUT YOURSELF

1. Do you think that the child's parents are ADD/H? (please !ID) Yes 0 No 0

2. Is an adult diagnosis service available? (please ~) Yes a No 0

3. What services would you like to see available for adults with ADD/H? Please comment------

124

L ·----- *Zh W a::;; ,. """'~ Appendic;es

ABOUT HOME LIFE 1. What was home like before ADD was recognisedZ

2. What was home like after ADD was recognised?

i I ' FAMILY LIFE BEFORE ADD/H SERVICE Please answer the following questions about family life before you attended the service at Our Lady's Hospital.

1. Has there been any loss of income to any member of the family due to your child's disorder: ( eg, Has anyone stopped working in order to stay at home, lost pay, lost a job?) Please tick one ofthe below

severe burden a moderate burden a no burden a

2. Before attending the ADIID service did your child's behaviour disrupt activities: ( eg, Child insisting on someone being with them, child becoming aggressive, not sleeping & not allowing others to sleep?) Please tick one of the below

severe burden a moderate burden a no burden a

3. Does your child's ADIID interfere with normal recreational activities: Please tick one of the below

severe burden a moderate burden 0 no burden a

4 Did relatives & neighbours stop visiting the family or reduced the frequency of their visits because of the child's behaviour or the stigma attached to their disorder? Please tick one of the below

severe burden a moderate burden a no burden a

5. Has the child's disorder had any other effect on relationships within the family or between the family & neighbours or relatives ( eg, separation of spouses, police intervention, embarrassment for family, sibling conflict) Please tick one of the below

severe burden a moderate burden a no burden a

6. Has there been any adverse effect on health of anyone in the family (e.g. someone losing weight or an existing illness made worse, become depressed or weepy) Please tick one of the below

severe burden a moderate burden a no burden D

125

w.e; .... ::nw.z; Appendices

CHANGES IN FAMILY LIFE DUE TO ADD/H SERVICE Please answer the following questions about changes in family life after attending the service at Our Lady's Hospital

L Has there been any loss of income to any member of the family due to your child's disorder: ( eg, Has anyone stopped working in order to stay at home, lost pay, lost a job?) Please tick one of the below

severe burden Cl moderate burden 0 no burden 0

2_ After attending the ADHD service did_child's behaviour disrupt activities: (eg, Child insisting on someone being with them, child becoming aggressive, not sleeping & not allowing others to sleep? Please tick one of the below

severe burden 0 moderate burden a no burden 0

3_ Does your child's ADHD interfere as much now with normal recreational activities: Please tick one of the below

severe burden 0 moderate burden 0 no burden 0

4 Did relatives & neighbours stop visiting the family or reduced the frequency of their visits because of the child's behaviour or the stigma attached to their disorder? Please tick one ofthe below

severe burden D moderate burden 0 no burden D

5. Has the child's disorder had any other effect on relationships within the family or between the family & neighbours or relatives ( eg,_ separation of spouses, police intervention, embarrassment for family?) Please tick one of the below-

severe burden 0 moderate burden 0 - no burden 0

6. Has .there been any adverse effect on health of anyone in the family (e.g. someone losing weight or an existing illness made worse, become depressed or weepy, become excessively irritable?) Please tick one of the below

severe burden 0 moderate burden 0 no burden 0

7 _ Any other comments

126

49* ,tAt ..t ~ · --:r. o•,! ,::«'Of(MI.~.•• .> Appendix B

' ..J

127

• ;:z ¥± Appendices

Letter of Information & Consent

The National Research Agency Ltd. has been asked by Dr. Deirdre Killelea, National co-ordinator and professional advisor of INCADDS and Senator Mary Jackman to prepare a document for the Oireachtas Committee on Health and Children regarding ADDIH in Ireland. The primary aim of the study is to determine the extent of psychiatric, psychological, educational and vocational services throughout Ireland, both outpatient and residential for children and adults with ADD/H. The extent of expertise in the medical, psychological, educational and social services fields in Ireland will also be investigated. The study also aims to heighten awareness of ADDIH among

government bodies i~ Ireland. Finally, the study also aims to determine if there is a need for an acknowledgement and understanding of the multi-disciplinary management of ADDIH including medication.

Data from interviews with parents, professionals and relevant others will be collected by the staff of the National Research Agency Ltd. and Professor Michael Fitzgerald., Child Psychiatrist.

Having read the above, please indicate on this form whether or not you agree to taking part in the study. 1 You will not be identifiable from the published results of the questionnaire and all information will be treated confidentially in accordance with the Data Protection Act (1988).

;;I

Agree [J Not Agree [] (please ~ as appropriate)

Signed: Phone no Date__ _ _

Signed by researcher: ------Date-- - -

Verbal consent given over telephone: [] Date----

1 For parents, ifyou do not agree to taking part in the study, it will not effect the service you or yonr son/daughter receives in the future.

128

~ ~ ~ - 'l!llll Appendices

Appendix C

I L'

129

i!WUi i Appendices

ADD/H PARENTS' QUESTIONNAIRE

1. Within your fa..-rnily who has been diagnosed as having ADD/H? Son Cl Daughter [J 2. What age is slhe? 3. Primary School C Secondary school [] ..- 4. At what age was the problem first noticed? 5. At what age did you present these problems to a professional?

6. Did your child receive a diagnosis? Yes C No [J .- 7. Ifyes, who made the diagnosis?

8. If yes, at what age was your child diagnosed? 9. Does the school system effectively meet the needs of your child? Yes C No c Comment------

10. Is your child currently receiving an additional service? Yes C No [J

11. Please describe the service your son/daughter is currently receiving?

130

~~ Appendices

12. Are you satisfied with this current service? Yes [J No rJ Comment·------

13. What professionals, if any, do you have contact with concerning your son/dau ghter? /'

14. Is your child currently receiving medical treatment? Yes [J No [J 15. If yes, do you find the treatment beneficial? Yes [J No IJ Conunem ______r

16. If no, would you like your child to receive drug treatment? Yes [J No C Conunent.______

17.What services would you like to see available for your son/daughter?

131 Appendices

18. In your opinion, who should be providing these services (i.e. Department of Health, Department of Education, Depar"tment of Children and Family)

. .--

19. Do you attend a support group? Yes Ll No C Comment______

20. Does your son/daughter attend a support group? Yes Cl No C

21. How knowledgeable are the general public, school personnel, politicians, the ...... ; medical profession of ADDIH? -

22.In your opinion how could this knowledge be increased?

_. 132

·?fv. - ....._., Appendices

23. Does the sufferer of ADD/H impact on day to day family life? Yes CNo IJ Conunent______

24.Any other comments you would like to make for the Oireachtas report

133 tn

(IX!Jl~ddy Appendi~

ADD/H ADULTS QUESTIONNAIRE

1. Within your family who has been diagnosed as having ADD/H? Son [] Daughter [] Other [J 2. Age range? 18-25 [] 26-35 [] 36-45 [] 46-55 [] 56+ [J 3. At what age was the problem first noticed? 4. At what age did you present these problems to a professional? 5. Did you receive a diagnosis? Yes C No []

6. If yes, who made the di~onosis?

7. If yes, when were you diagnosed? 8. Did the school system effectively meet your needs? Yes Cl No [] Comment______

9. What services are available for adults with ADD/H?

10. Are you currently receiving an additional service? Yes C . No []

135 Appendices

11. Please describe the service you are currently receiving?

12. Are you satisfied with this current service? Yes [J No [J Conunent.______

__,

13. What professionals, ifany, do you have contact with?

14. Are you currently receiving medical treatment? Yes [J No [J

15. Ifyes, do you find the treatment beneficial? Yes [J No [J Conunent------

16. If no, would you like to receive drug treatment? Yes [J No [J Conunent.______

136

-' 17. What services would you like to see available for Adult with ADD/H?

18. In your opinion, who should be providing these services (i.e. Department of Health, Department ofEducation, Department of Children and Family)

19. Do you attend a support group? Yes [J No [J Comment------

20. How knowledgeable are the general public, school personnel, politicians, the medical profession of ADDIH?

21. In your opinion how could this knowledge be increased?

137 Appendices """ 22. Does the sufferer of ADD/H impact on day to day family life? Yes . CNo Cl Corrunent______

23. Any other comments you would like to make for the Oireachtas report

138

~ - Appendices

Appendix E

139

- __,.

Appendices

Joint Committee on Health and Children

...,.

Deardaoin, 25 Feabhra 1999.

Thursday, 25 February 1999.

Members Present:

Deputy Michael Ahem Senator Dennot Fitzpatrick

Deputy Paul Bradford Senator Camillus Glynn

Deputy Beverly Cooper-Flynn Senator Mary Jackman

Deputy John Gormley Senator Pat Moylan

Deputy Cecilia Keaveney

Deputy Brendan Kenneally

Deputy Liz McManus

Deputy Batt OKeeffe in the Chair

140

&;;::;::: .... :::ii$fJ,l,c ...... ,.,.,.; Appendices

Chairman: I am pleased to welcome Marian treated in.Ireland At two and a half they recognised Bridgeman. Brigid Kelly, Alice Cushnahan and Dr. that he had problems. When he was eight the KilWea who will address the joint committee on phrases "class clown" and "smart alec" were being ADD which is dealt with in Senator Jaclanan's used in school and remedial help was withdrawn as report which will be presented following this he was deemed to be inattentive and impulsive. This discussion. Unlike witnesses, members of the joint was interpreted to mean lazy and not wanting to committee enjoy privilege. I invite the delegation to learn. make a brief presentation which will be followed by Because of their son's behaviour, the parents had a question and answer session. problems in getting out on their own. When he was ten the words ·bad", ·oold" and "undisciplined" were being used His parents tried everything but nothing Mrs. KeUy: I am the mother of an ADD child. On worked. They went privately to a psychiatrist but a behalf ofthe Mid-Western ADD Support Group, of year later there was still no diagnosis. The which I am a member, and the Irish National Council psychiatrist then suggested that the child see a for ADD Support Groups, of which I am psychologist to whom the parents went privately. chairperson. I than.l< the members of the joint The psychologist saw it as a family problem. committee for their help and for listening. caring and When he was 11 and while seeing the psychologist becoming involved \\·henever they came across cases the child started to drink heavily, take drugs and steal of ADD, whether in their own families, their from anyone and everyone. He continued to light extended families or among their constituents. As a fires which resulted in damage to the home. When result of their intervention and the research he was 13 he was expelled from school and the youth commissioned by the joint committee, the day when reach programme. To safeguard him, his family, ADD sufferers will have access to a comprehensive which felt isolated from its immediate relations and diagnosis and appropriate treatment at an early age neighbours because of his behaviour, moved from the has been brought forward city to the country. It seemed there was no solution In its severe and untreated form; ADD can cause pain to the problem. and destruction to the child concerned, his or her The child's father, his image ofhead of the household family and society. The good news is that it is and family protector shattered, started to stay out on recognised internationally as a treatable condition. It his own - at least it was quiet His wife remained at can be diagnosed at an early age by experts in the home heartbroken in an effort to contain her son who field. That is not the reality, however, for many by now was bulimic and paranoid. His frustration families in Ireland with children in I 6 to 25 age changed aggression to violence. Out of concern his group who are awaiting diagnosis, not to mention parents went to the Garda Siochana and a social treatment worker who referred him to a health board To illustrate the point, let me highlight the quest of psychiatrist in the belief that more up-to-date one set of parents to have their son diagnosed and information and expertise may be available.

141 Appendices

When the violence increased and the child's mother taking eased He still needs psychological help and ended up with a black eye his father, in a desperate vocational training from somebody who wderstands attempt to get someone to listen, called the Garda ADD. As there is nobody available in the health Siochana and a frightened i 4 year old spent two board, he has to return to England to have his nights in an adult psychiatric ward. Two case ·medication monitored. conferences were held. There is nowhere in the This is but one of the many stories we have heard on country which can contain and treat him. He is our helpline about which the joint committee will suffering from ADD, a treatable condition. As his hear more from the secretary ofthe Mid-Western father would not take him back without treatment, he ADD Support Group, Marian Bridgeman. -: fotmd himself with his mother in a flat in town Mrs. Bridgeman: Attention deficit hyperactivity subsidised by the Department of Social. Conununity disorder, ADHD. starts in childhood. It is a genuine and Family Affairs which does not have a form which disorder which can cause children of all abilities to covers such a situation. floWlder and behave poorly at school. It is -;;: When he was 15 the child was so paranoid and recognised internationally as a treatable condition. threatened that he walked arotmd with a knife up his With rapidly increasing awareness ofADHD parents sleeve. He was terrified he would kill somebody. are seeking effective help and advice on how to help

When the violence heightened he spent another week their children succeed in reaching their true potential. in an adult psychiatric ward but nothing changed. He socially and academically. saw his psychiatrist every month. Because hyperactivity is not always present. many When he was 16 the child's mother slept ,,;ith her car children go undiagnosed and do not get the help they keys and money under the pillow. The landlord was urgently require. The obvious wderdiagnosis of this withered from telephone calls about the tenants from condition is cause for real concern to parents in hell. The Garda Siochana met the child three times Ireland and a handicap in the provision of in one week.. He spent one night in a cell. Fearing appropriate school and health services. for his safety his mother went against her husband's ADHD is a treatable condition. The attention deficit wishes and returned home with him. This was the disorder mid-west support group was fowded in last straw for her husband. early 1997 in response to the realisation among When he was 17 the child was transferred to the parents that their children's disordered behaviour and adult psychiatric department from which he has not underachievement at school may well be due to .a received a service to this day. His mother eventually medical condition. Many ofour parents have ..... decided to take him to a professional in England and searched for years in vain for an explanation for their he was comprehensively diagnosed as suffering from child's unexplained behaviour and very often blame ADD and co-existing conditions. He was put on themselves for some imaginary shortcomings in medication as part of a treatment plan. The change parenting. When they attended meetings and learned was dramatic and consistent. The aggression almost from other parents that their suffering was not disappeared and the problems of drinking and drug unique, many wept openly. As attendance at monthly

"'- 142

~--~-::::-- Appendices

meetings doubled, then trebled, the real scale of the The mid-west telephone helpline receives an average problem began to emerge. of more than 50 calls a week from parents all over Responding to this urgent need, a committee was Ireland who are desperate Ireland and it has received formed and we commenced a programme to raise that average number of calls for the past two years. awareness of ADHD among the general public and to These calls are from parents of children of all ages. provide support for those families affected. In Some ofthe calls are extremely complicated and , getting together the aim of our group is to help others require referrals to a nmnber ofprofessionals. still looking for answers to their problems by making Usually the parents are already desperate' before they information available and by caring and sharing with ring us. Some children are already on the verge of each other. We are also concerned for those adults being expelled from school or some have already whose disordered childhood has burdened them into been expelled from a few schools. Some may have the future because ofour failure to recognise their got such a bad report form primary school that they plight and failing them when they were most in need. cannot even secure a secondary school place. Some The attainment ofjustice and treatment for them is a are looking for the fastest road towards getting a primary aim for our group. diagnosis and treatment because their children who After our involvement v.ith the "Nationwide" are out of control and drinking and on drugs because programme, which was shown on RTE in September they cannot handle their condition as they were never 1998, we received thousands of calls from all over diagnosed and treated the country. We discovered there were seven other Misdiagnosis can lead to depression and, in severe groups spread around the country, involving some cases, to suicide. Some parents are so exhausted 900 families that we know of. We have since before they ring us that they have almost given up. noticed that every time we participate in a radio Their households are in turmoil because of the programme or write a newspaper article the helpline behaviour of these children. Husbands and wives are never stops. at each other's throats because one of their children is Following on form that "Nationwide" programme and causing havoc for the other siblings in the family. the calls we received, the mid-west support group This condition does not only affect the child ran a conference in Mary Immaculate Training concerned, it affects the family. College in October 1998. We had internationally Ifthe experts are not out there, even we cannot help. recognised speakers at the conference, which again This is what is so frustrating. These painful stories attracted professionals and teachers from all over the now exist because these children went through the country. We got an overwhelming response from system but never met a professional with the the participants' evaluation sheets. It was on this expertise and experience in ADHD. To this day this weekend we hosted the second meeting of kind of expertise is rare in Ireland. This is why the INCADDS , the Irish National Council for Attention Crumlin project made such a difference. It Deficit Disorder Support Groups, which has gone contained the expertise in ADHD. Unfortunately, it

from strength to ~ength. is not in place any more because Dr. Killilea has

143

- Appendices

moved to the mid-west area. approximately £ 1,500 only to find on returning home I am pleading with committee on behalf of the mid there is no service available and doctors are not west support group and INCADDS as we approach willing to prescribe the recommended medication. the millennium to not let this problem continue to We need a system whereby psyci:Liatrists and affect the next generation. psychologists with proven expertise and experience I wish to introduce Alice Cushnahan, the PRO for can be drafted into health board positions. These

'-:. our group to the committee. She will talk about the experts could provide up to date and internationally · services we need. I thank the committee for their recognised care for adult and child ADD sufferers. time. They would also provide much needed training for professionals within the health boards, which would Mrs. Alice Cusboah.an: Good afternoon. My role lead to early comprehensive diagnosis, appropriate here today is to let the committee know the services treatment and extended time for professionals to see that are needed to enable children and adults with more patients. attention deficit disorder, with or without Recently the Department of Education and Science hyperactivity, or ADD, as it is known, to live made more money available for schools in fulfilling and successful lives. disadvantaged areas and rightly so, but ADD

One of the greatest historical leaders ofthis century, children are doubly disadvantaged ifthey do not live Sir Winston Churchill, suffered from ADD. His in a disadvantaged area. They are placed in over - .,- success in life was probably due to the his parents crowded classrooms v.ith little or no remedial help or being able to afford to send him to private education resource teachers. No teacher finishing training and in later years psycho-stimulants were available to college should be entrusted with the education of our him on request I am sure member of the committee children, unless they are educated in recognising and did not know that teaching children with attention deficit disorder. _.... The majority of today's ADD sufferers are not so Between us we highlighted some of the points we lucky. Enormous amounts ofmoney are wasted hope are covered in the Oireachtas report We urge annually by health boards, as children are the committee to read the full report and give its misdiagnosed and, therefore, wrongly treated. When recommendations its serious consideration to its they reach adolescence, a large number of these recommendations. children are sedated and put into psychiatric wards or Each child is a gift from God and it is up to us as placed in care until the age of 16 when they graduate parents and carers to cherish and nourish our ""'"' into adult psychiatric care, where unfortunately the children and, with the committee's help, that would. picture is no different and their future is very bleak. be possible. Some of the parents in the group, After seeking help I would like to take this opportunity to thank for many years, some parents in our group in Professor Michael Fitzgerald and Dr. Deirdre Killilea desperation travelled to England where they received who have been very helpful and always there when

a diagnosis and a treatment plan at a cost of we needed them in times of crisis. I cannot forget

144

...... ~ ~ ~ ..... __ "...... _, ~ ~ Appendices our mid-west Senator, Senator Jackman, who together to form the Irish national council of attention secured the money to fimd the cost of the report I deficit disorder support groups, called INCADDS. I also thank Deputies Neville and O'Sullivan, whose am the co-ordinator of that association and Brigid doors have always been open to us. Thank you, Kelly is the national chairman. This is the first time Chairman. we have got together as a group and we meet four times a year. Chairman: · I thank the group for their presentations.

I compliment each member ofthe group on the great Chairman: One of the reports states the need to clarity of their presentations. They highlighted in recognise this disorder at least by the age of seven. graphic detail the harrowing life experience of this There seems to be a major emphasis on national disorder. We have all been touched by the story they school teachers with less emphasis on general had to telL It was nice that some historical practitioners and parent knowledge ofthis disorder. knowledge was also infused in one of the What is the significance of the age of seven? Why is presentations. I am sure some members would like there not a greater emphasis in the home and among to ask the group questions. Before I call on general practitioners? members, could one of members ofthe group tell me how many people nationally the group deems to be Mrs. Bridgeman: I am the parent of a five and a affected by ADD? What is the level of integration of half year old child. I knew I bad a problem when my the various support groups around the country?. child was two and a half years old. I had not met While the mid-west group has a particular policy, is Mary in years - she taught me in school - but I met the group moving towards formulating a national her one day in Dwmes Stores in the Parkway when policy with other groups? Adam was 18 months old. I told her I knew there Dr. Killilea: Statistically, 3 per cent to 5 per cent of was something wrong with him but I did not know the population are diagnosed as suffering from what it was. I had an older child who was what could attention deficit disorder. That is based on the DSM be called a people pleaser, he was the perfect child the diagnostic manual. There are two different who did everything the way he was supposed to do it perspectives on this, the American perspective and I thought I had a juvc:nile delinquent on my bands the European perspective. . with the two and a half year old. The European perspective is a more restricted definition and approximately l per cent ofthe Mrs. Bridgeman: The normal method of population would be considered to have attention management simply did not work in his case. This deficit disorder. In Ireland it is about 2 per cent to 3 child was at serious risk of abuse. I remember per cent; we are using a combination of these two thinking one night that ifsomeone does not take him definitions. There are nine support groups in away from me, I will hurt him. That is how bad the existence representing about 900 families. They are situation had become. I consider myself a fairly "on located throughout the country but they have joined the ground" person. Even though my child was

145 Appendices

diagnosed early I was very lucky. I am one ofthe few Mrs. Cushnahan: As far as the health boards are people who have gone through this quite easily, concerned, we have two parents here who travelled starting with my GP. She picked up on this problem to England for diagnosis after going to the health immediately. We started him in a pre-school and he boards, and also getting private treatment, for about is now in a mainstream school, but I am no better off 12 years. only to be told it is a parent problem. now than I was when Adarn was three because there Parents are made to feel they are the problem. not the is no support for him. Adam does not fall into any child, even though their other children fall within the category in the education system so I am still no normal behaviour limits. When parents go to better off. England at great expense and come back with their prescription for the medication, it is not passed in Dr. Killilea: Can I add something to that? One Ireland because it has not been tried and tested The question asked concerned the significance of the age medication is so near to them but they are concerned six or seven. The age of six or seven is the time because there could be side effects and so on. We when some of the medications would be used are really in a limbo and we have to keep travelling appropriately and it is also a good time to do some back and forth to England for prescriptions. We psychological testing. We would also be looking at have to get the message across to the health boards them not just in terms of ADI-ID and ADD but also in and the to the Depanment of Health and Children. terms of their co-morbidities - do they have a specific learning disability or a conduct disorder? That is a Mn. Bridgeman: I bad a call recently on the good time to use some of the standardised tests. helpline from a lady whose child was on two ritalin at Also, by definition the condition must have occurred the age of 12. My son who is five is on four and a before the age of seven. Some children would have a half ritalin a day. It is supposed to be given

somewhat later onset~ they might be five or six before according to height and weight They were willing to -...... - the family identifies it By the age of seven it would lock the child away at age 12 rather than try be apparent in a person that they will have this something else. Many children with attention deficit condition. disorder have other conditions that need to be addressed also. They are addressing the problem of Deputy M. Abem: There was mention of the attention deficit disorder but not the other problems. problem of diagnosis. Since INCADDS was set up, I would prefer to try another medication because it has any progress been made with the Department or would be the last straw for me to lock my child away

with the health boards and so on in terms of helping which costs the State a fortune. in the diagnosis of these children? What is the problem with getting the medication for children who Mrs. Kelly: The missing link is the expertise. While

~. have been diagnosed? What is the reason for that this disorder is recognised internationally it is new to and what needs to be done to address the problem? Ireland, and that is the problem. We do not have the expertise. We can set up a unit but if we do not have

146

---'

-~ -;.~t;"'' ~ .L~ ·~· -~ ~·· ~-· · ·:~-- ..___. Appendices

someone with the expertise to run that unit, we will worse situation than the children. Nobody in the not have children and adults diagnosed. proper country is treating the adults. When doing the report treatment '"ill not be given and the necessary I know the researchers tried to :find psychiatrists and information will not come down from the psychologists in the country who were working with Department Ifwe won the Lotto or if we could adults, but they could not find anybody. That is a hijack someone, we would hijack expertise. That is dreadful situation because it is a treatable condition what is missing. Ifwe have expertise, everything in adults. We need to get the medications for adults else would fall into place. approved in this country and I know there is a recommendation for the Irish Medicines Board to Dr. Killilea: My background is that I came from the approve ritalin for adults, which is commonplace in United States where I had run programmes on other countries. We would also like to see more attention deficit disorder for three years. When I doctors here learning about the use ofri talin, came here I expected to be able to continue that work clonidine and dexadrine for the young children. and share my experiences, yet many restrictions were There is tremendous need for education and training placed on me. I worked for several years in a among the professionals. department of child psychiatry here and in three and a half years only came across three or four children Senator Jackman: I thank the group for attending who were diagnosed with ADIHD. There was a the committee today and those who came to listen to great reluctance to put children on any medication; the presentation. that would have been a small percentage of the children in that geographic area. There were many I will not be asking a question but I want to put in children, therefore, who were not being identified. context the fact it has been a long road for the three I was fortunate to be able to set up the programme .in women, one of whom I taught. Many of us are Cnunlin. That was the first time we had been able to teachers and have probably come across attention import and use the whole American programme and, deficit disorder students in our time and I know that as can be seen from the report, it was quite some of them may never get to second level successful. I asked on many occasions ifI could train education. It is a measure ofthe grit and more psychologists because when I left there would determination of the three people here and the many not be anyone to follow on my work, but we were others from other parts of the country who came in unable to do that. The programme has been shut with them and Dr. Deirdre Killilea and Professor down since December and that is where we need the Michael Fitzgerald, child psychiatrist, that they have work. I have moved to the mid-west area and reached the stage where they will not give up. They hopefully I will be given permission to do some work know something can be done for them. The hard ~~c._,\...\~;.t\- there, but I am an adult ps;§Bintrist ~d I will not be part is over in once sense because there is awareness. working with children. I am pushing hard to set up Knowing the disorder can be treated, knowing they the first adult sovjces because they are in an even have survived the system when others have not - I

147 Appendices

possible is a couple of interventions. Localised in different ways. A tremendous amount can be done services are needed. Whoever will be carrying out in that area at no great extra cost. It is just a case of the therapy, whether they are psychologists or social looking at it a little differently. workers, will need training. It is not difficult to build up the expertise. Ifthey are put in a situation where Deputy Keaveney: As a music teacher I always they can work on this for four to six months, they can found music a means of teaching children with. get the nitty gritty of the expertise. It can be further problems. I have tried to encourage the Department

built up over time by working the cases. of Education and Science to examine the role of music in adult education. I do not know if attention Deputy Keaveaey: The expertise can be built up deficit disorder can be helped by music but I presume and it should be done on a health board basis at least there might be a role for it somewhere. That is my Ifa problem can be identified before the child is pet subject. seven years old, one can prevent a bigger problem developing in the future and one need not worry Mrs. Bridgeman: That is a valid point. Both of about the child coming before the courts and being Adam's teachers played the harp and he loves it I sent to prison. Too many times we look at the end would have approached the teacher on the first day

result instead of trying to deal with the problem at the and said that if they could not handle him, I would start. remove him. However, I was fortunate enough to Your presentation is fascinating. It is amazing that have him on medication. I did not want him on something can be recognised as a medical problem in medication but I did not have a choice. It was that or Europe but not in Ireland. It is an issue we must give him away and I did not want to give my baby pursue. away. That is how bad the situation was. The first hurdle was that I could not get a diagnosis Dr. Killilca: I would like to focus on the 16 to 25 on paper for Adam. I spent two years fighting the year olds. These children will not be picked up. system just to get his diagnosis on paper. I was They are out of child psychiatry and have moved into asked why I wanted to label my child. However, I adult psychiatry where there is no treatment for them. had to get him a label so I could get him what he u These are the people who have dropped out of needed for his education. school, many of them at 11 or 12 years of age, and I have been spun around in circles, been sent many of them cannot make it in Youthreach or FA s everywhere and been promised the sun, moon and courses because they cannot attend or stay with them stars. I have gone about this the nice way but I still long enough. have nothing. In terms of ongoing treatment, he is We need to get into the Youthreach centres, identify being babysat at school. That is not good enough. the children who need that type of specialised Deputy Keaveney: I hope the new psychological attention and develop programming for them. It is service in schools will improve things. ~ the same material but it is given in shorter bites and Mrs. Bridgeman: My local school does not even

150

~~ Appendices have access to a psychologist Deputy Keaveney: We have one for two counties. The service is being improved. Mrs. Bridgeman: I had to move him out of the area in which I live to a disadvantaged area so he would be covered by a psychologist That is disgracefuL

Deputy Keaveoey: At least there is a positive move in that area at present and hopefully it will be expanded. Chairman: I thank our guests. The discussion has been extremely helpful. We are pleased you could come and we are concerned about what we have heard. Now that the Committee has the report, it will pursue the matter further. We hope to be in a position to assist in redressing many of the difficulties you have experienced.

The Joint Committee adjourned at 2.35 p.m.

151

~ · .... , ..... ~ ZSI Appendices

Members of the Joint Committee on Health and Children

Deputies: Michael Ahem (FF) Senators: Dermot Fitzpatrick (FF) Paul Bradford (FG) Pat Gallagher (Lab) Deirdre Clune (FG) Camillus Glynn (FF) Paul Connaughton (FG) Mary Jackman (FG) Beverley Cooper-Flynn (FF) Pat Moylan (FF) John Dennehy (FF) John Gormley (GP) Cecilia Keaveney (FF) Brendan Kenneally (FF) Liz McManus (Lab) Dan Neville (FG) Batt O'Keeffe (FF) Alan Shatter (FG) G.V. Wright (FF)]

Deputy Liz McManus was appointed in place ofDeputy ROis:in SbortUI on 24 February, 1999

153

- ~· F"'t:z:a:; .w i? atst:

J Appendices

Joint Committee on Health and Children

ORDERS OF REFERENCE

Dail Eireann 13th November, 1997, (**28th April, 1998), ' / Ordered:

(l) (a) That a Select Committee, which shall be called the Select Committee on Health and Children, consisting of 14 members of Dail Eireann (of whom 4 shall constitute a quorum), be appointed l to consider such-

(i) Bills the statute law in respect of which is dealt with by the Department of Health and Children, and

. (ii) Estimates for Public Services within the aegis of that Department,

as shall be referred to it by Dill Eireann from time to time.

(b) For the purpose of its consideration of Bills under paragraph (l)(a)(i), the Select Committee shall have the powers defmed in Standing Order 78A(l), (2) and (3).

(c) For the avoidap.ce of doubt, by virtue of his or her ex officio membership of the Select Committee in accordance with Standing Order 84( 1), the Minister for Health and Children (or a Minister or Minister ofState nominated in his or her stead) shall be entitled to vote.

(2) (a) The Select Committee shall be joined with a Select Committee to be appointed by Seanad Eireann to form the Joint Committee on Health and Children to consider-

(i) such public affairs administered by the Department of Health and Children as it may select, including bodies under the aegis of that Department in respect of Government policy,

155

-- .·t te::: Appendices

(ii) such matters of policy for which the Minister in charge of that Department is officially responsible as it may select,

(iii) the strategy statement laid before each House of the Oireachtas by the Minister in charge of that Department pursuant to section 5(2) of the Public Service Management Act, 1997, and shall be authorised for the purposes of section 10 of that Act, and

** (iv) such Annual Reports or Annual Reports and Accounts, required by law and laid before either or both Houses of the Oireachtas, of bodies under the aegis of the Department(s) specified in paragraph 2(a)(i), and the overall operational results, statements of strategy and corporate plans of these bodies, as it may select. r

Provided that the Joint Committee shall not, at any time, consider any matter relating to such a body which is, which has been, or which is, at that time, proposed to be considered by the Committee of Public Accounts pursuant to the Orders of Reference of that Committee and/or the Comptroller and Auditor General (Amendment) Act, 1993.

Provided further that the Joint Committee shall refrain from inquiring into in public session, or publishing confidential information regarding, any such matter if so requested either by the body or by the Minister in charge of that Department; and

(v) such other matters as may be jointly referred to it from time to time by both Houses of the Oireachtas,

and shall report thereon to both Houses of the Oireachtas.

(b) The quorum of the Joint Committee shall be 5, of whom at least 1 shall be a member of Dail Eireann and 1 a member of Seanad Eireann.

(c) The Joint Committee shall have the powers defined in Standing Order 78A(l) to (9) inclusive.

(3) The Chairman of the Joint Committee, who shall be a member of Dcill Eireann, shall also be Chairman of the Select Committee.

156

"'..!'·"' ~. - ~Ml'So..;..JC£!10S:::;::r::;;JW]L£ & ; '" ti!>&Z.SJW. t.t:£!!8ii£ Appendices

Seanad Eireann 19 November 1997 Ordered

(1) (a) That a Select Committee consisting of 5 members of Seanad Eireann shall be appointed to be joined with a Select Committee of Dill Eireann to form the Joint Conunittee on Health and Children to consider-

(i) such public affairs administered by the Department of Health and Children as it may select, including bodies under the aegis of that Department in respect of Government policy,

(ii) such matters of policy for which the Minister in charge of that Department is officially responsible as it may select,

(iii) the strategy statement laid before each House of the Oireachtas by the Minister in charge of that Department pursuant to section 5 (2) of the Public Service Management Act, 1997, and shall be authorised for the purposes of section 10 of that Act, and ·

(iv) such other matters as may be jointly referred to it from time to time by both Houses of the Oireachtas,

and shall report thereon to both Houses of the Oireachtas.

(b) The quorum of the Joint Committee shall be 5, of whom at least 1 shall be a member of Dail Eireann and 1 a member of Seanad :Eireann.

(c) The Joint Committee shall have the powers defined in Standing Order 62A( 1) to (9) inclusive.

(2) The Chairman of the Joint Committee who shall be a member ofDail Eireann.

157 j