A Viewing for the Policy- makers… Summary Policy and intervention strategies for ADHD within Australia and the United States over the last ten years have centred on pragmatic responses to specific co- morbid learning disabilities. Recent research has shown that this only addresses the learning needs of approximately half of those diagnosed with the condition. Many barriers to performance at school for students with ADHD are social and not academic, for which the intensification of literacy and numeracy programs will have little effect. Traditional remedial education strategies are found to be condescending by these students and parents who are expressing increasing concern about the neglect of important social barriers to their child’s successful participation in adult life. The study on which this report is based found that secondary students demonstrate a keener sensitivity to the social issues surrounding ADHD than many who act on them, or on their behalf. It argued that it would seem that this is a result of a popular, professional and academic blindness in Australia and the United States to the significant social side of ADHD. Further, it concluded that this blindness has resulted in a policy situation that may well contribute to the rapidly growing rates of medication use for ADHD in these two countries. Introduction The central premise of this report is Wakefield’s (1992) definition of a disorder as a harmful dysfunction. Thus, it assumes that Attention Deficit Hyperactivity Disorder (ADHD) is a biological difference that causes social impairment. As a consequence ADHD is considered equally a social and biological condition. The report notes the significant emphasis of biological research and medical treatments for ADHD in Australia and the United States (Du Paul & Eckert, 1997; Goodman & Poillon, 1992; Ideus, 1994; Reid et al., 1998), to argue an emphasis on the sociological is needed to redress this imbalance. It also notes the sociological emphasis in conceptions of these behaviours in Europe (Cooper, 1994; Cooper & Ideus, 1995) and acknowledges that in that cultural context the balance may well need to shift the other way. However, within Australia there are serious social issues not being addressed within current policy resulting in many students with ADHD not having their needs met under existing services (Atkinson et al., 1997). The need for a consideration of this sociological side of ADHD is only further enhanced by recent research highlighting significant differences in diagnosis and treatment according to culture (Ideus, 1994), class, ethnicity, and gender (Bussing et al., 1998a; Bussing, Schumann, Belin, Widawski, & Perwein, 1998b; Bussing, Zima, & Belin, 1998c; Bussing, Zima, Perwein, Belin, & Widawski, 1998d; Prosser & Reid, 1999; Reid & Maag, 1997; Zito, Safer, dosReis, & Riddle, 1998). This report consists of five separate parts: 1. An introduction to a sociological perspective on education and ADHD policy; 2. An overview of American education policy and ADHD; 3. An overview of Australian education policy and ADHD; 4. Limitations in Australian policy highlighted by this study 5. Conclusion / Implication for Education Policy makers. An introduction to a sociological perspective on education and ADHD policy A sociological perspective on ADHD is not new but has been largely marginalised in academic and professional discourse. Ideus (1994) argues that this is due not only to the politicisation and medicalisation of the condition, but also of the recent cultural deference to medical and psychiatric disciplines within the United States. She explains that increasingly popular opinion is polarised in the United States by the media and advocacy groups into ADHD supporters and ADHD sceptics. It is not that sociologically aware and scientifically sceptical ADHD supporters do not exist, she argues, rather that their work has been marginalised as counter productive to ADHD activism interests. Part of the problem with those who have taken a sociological perspective on ADHD is that they have not accepted the biological determinism and pseudo-objectivity of the dominant approach. Significant works have shown that the origins and development of ADHD is more closely linked to cultural imperatives than ideologically neutral science. For instance, Schachar (1986) found that the origins of ADHD lie in the particular political and economic climate of the United Kingdom at the turn of the century. He demonstrated that rather than being a product of rigorous scientific research, the formation of the basic principles of the condition was deeply rooted in the values of Social Darwinism popular at the time. Conrad (1976) in his review of Hyperactivity in the seventies also found that cultural and political forces were important in the understanding and labelling of this condition which was a precursor to ADHD. He found that that the growing theories on medical treatment for children through the fifties and sixties, the growth in assertiveness of pharmaceutical companies in the sixties, and the initiatives by the US government to regulate drug treatment in the early seventies, all had a significant influence on the emergence of the condition throughout the seventies. Further, Conrad observed that while the nomenclature existed and grew from the turn of the century, both the medical label and treatment were not widely used until the culmination of the above social factors. In short, he argued that the condition only became prevalent due to specific needs and forces within American society. More recently, Lawrence and McCallum (1998) detailed the link between the growth of the psychiatric discipline in the United States and the growth of ADHD. They argue that throughout the eighties and into the nineties the condition has become the subject of attention between competing disciplines who would seek to own the dominant conception of the condition. This situation has been fostered by the media they conclude and runs contrary to the best interests of the young people involved. Perhaps Katherine Ideus puts it most succinctly. The pragmatic, reductionist stance which has come to dominate the ADHD field in the United States, while representing one range of beliefs, interpretations and mandates for action, does not necessarily translate well into many American sub-cultures, or cultures and societies outside the United States. The implicit assumptions held by any society, its professions and policy makers come under scrutiny at the intellectual, cultural and geographic borders. Thus, each society interested in ADHD as a category of mental disorder, must first deal with the inherent cultural foundations which have been rendered invisible in the American field (Ideus, 1994, p.179). As this quotation implies a sociological perspective on ADHD highlights the importance of cultural, political and economic priorities in the acceptance of the category in differing national and cultural environments. This an insight particularly relevant to multicultural Australia. Further, a sociological perspective on ADHD shows that while the popular conception of ADHD used by advocacy groups draws on scientific research it overlooks significant issues within that research. As Yelich and Salamone (1994) noted of the seventy percent who respond to medication, the majority record great variation in response according to a range of factors. Secondly, as previous study has shown (Rapaport & Buschbaum, 1980), they argued that most children and not just those with ADHD respond to medication with improved concentration and control. Thus there are significant difficulties with the proposal that response to medication is a sign of the presence of ADHD and an unproblematic form of treatment. Yelich and Salamone also observed that while most other disorders have decreased in levels diagnosed with improved procedures and knowledge, ADHD has mushroomed. They posit that this raises significant issues about the status of the condition as an objective medical category. In addition, they also note that problems occur primarily on entering the school environment and for discrete disorder there is a great variation in problems across different sites. Finally, Yelich and Salamone note that ADHD prevalence and severity shows significant links with lower socio-economic status. Another difficulty often overlooked by the popular conception is the caution with which results are distributed on the part of researchers (Reid, 1996; Reid & Maag, 1998a; Reid et al., 1994). Using the well know Zametkin study (1990), which used brain mapping techniques and has been widely heralded as proof of the biological basis of ADHD, Reid et. al. (Reid & Maag, 1998; Reid et al., 1994) highlighted not only inadequacies in the preliminary study but Zametkin’s claim that the results did not comprise proof of the biological basis of ADHD (Zametkin, 1989). Further, they note the failure to reproduce the study’s results since that time despite several attempts. While still supportive of the utility of the biological model within the medical field, Reid et. al. (Reid & Maag, 1997; Reid et al., 1994) express concern over the lack of scientific scepticism in the promulgation of the popular model and note this popular conception presents further difficulties when used as a tool to acquire additional education services. They refute arguments for ADHD to be made a category of disability in education on the grounds that it cannot be objectively diagnosed, that it is not significantly different from other conditions currently receiving services, and there is no conclusive proof of its organic basis. In response they reaffirm that while a useful medical category its emphasis on deficit does not necessarily translate well into professional education environments. It is a situation not helped by a recent review (Du Paul & Eckert, 1997) which found that less than ten percent of studies completed on ADHD focussed on the area in which the majority of difficulties are experienced - the school. Summary A sociological perspective on ADHD is not new but has been largely marginalised in academic and professional discourse; A sociological perspective on ADHD shows that the origins and development of ADHD is more closely linked to cultural imperatives than ideologically neutral science; A sociological perspective on ADHD shows that while the popular conception of ADHD used by advocacy groups draws on scientific research in relation to ADHD it overlooks significant flaws within that research and caution on the part of researchers; A sociological perspective on ADHD reveals that this popular conception presents further difficulties when used as a tool to acquire additional education services; and, A sociological perspective on ADHD highlights the importance of cultural, political and economic priorities in the acceptance of the category within multicultural Australia. An overview of American education policy and ADHD Prior to the creation of the IDEA in 1990 most parents of children with ADHD were unaware of their child’s eligibility for educational services in the United States (Du Paul & Stoner, 1994). However, in response to intense lobbying from interest groups concerned that ADHD was not included as a specific learning disability within the IDEA, the education department clarified services available for ADHD in 1991 (Davila, Williams, & Mac Donald, 1991; Diller, 1998) Some have argued that this clarification has contributed to the interest and growth in diagnosis of the condition since that time and calls for it to be defined as a disability (Diller, 1998), a call which Reid et. al. (Reid & Katsiyannis, 1995; Reid et al., 1994) have criticised due to problems within the conception of the condition and the presence of effective existing strategies. Barkley (1995; 1998) has argued that many students with ADHD do not demonstrate poorer academic achievement and learning difficulty, and that there is not enough empirical evidence to argue either for ADHD’s inclusion as a disability category or that needs are currently being met with American education institutions. This difference is perhaps caused by the significant difference between theory and practice. In theory, currently in the United States it is estimated that 50% of students diagnosed with ADHD have their learning needs met through an IEP (at no cost to the parent) under the IDEA (Reid & Maag, 1998). The specific details of this situation are detailed by Rutherford Turnbull (1994) and Latham and Latham (1992). In theory, the remaining 50% are considered to have social barriers to academic achievement and these needs are met under the ‘any barrier to significant life activity’ clause of Section 504 of the RHA (Reid & Maag, 1998). In practice however, schools have been reluctant to fulfil their responsibilities under the IDEA and RHA, and hold some scepticism over the utility of the medical label ADHD (Du Paul & Stoner, 1994). In addition, due to a funding system based in property taxes, school services in the United States vary greatly from district to district. It leads to a practical situation which Diller describes. Special services are costly, and while the IDEA provides some federal funding for special education, only a certain amount is available in a given year, to split so many ways. Section 504 carries no funding of its own; services obtained under its provisions must be paid for out of general education funds in most states. If fewer students actually qualify for special education, then more money is left for the district’s general education fund. But if more than ten percent of the students qualify for special education then administrators must draw funds from general education to pay for federally mandated services… This has made some school administrators reluctant to devote what they see as a disproportionate amount of money and resources to serving disabled students, claiming that the general student population suffers as a result… Teachers are caught in the middle, compelled to economize but directed to make accommodations for disabled students (Diller, 1998, pp.157-8) It is not surprising then to find that research reveals that many parents seek an ADHD diagnosis only after dissatisfaction with education institution responses, and in a battle to secure addition education services for their child (Damico & Augustine, 1995). When taking a more macro sociological perspective on ADHD and education policy in the United States one must also note the recent trend toward standardisation and the factory model in schools. This has resulted in student diversity being defined as a problem and given limited education resources, it is no surprise that in that context ADHD diagnosis has grown significantly over the last ten years (Cooper, 1994; Cooper & Ideus, 1995). Summary Prior to the creation of the IDEA in 1990 most parents of children with ADHD were unaware of their child’s eligibility for educational services in the United States; In response to lobbying from interest groups concerned that ADHD was not included as a specific learning disability within the IDEA, the education department clarified services available for ADHD in 1991; Currently, in the United States it is estimated that 50% of students diagnosed with ADHD have their learning needs met through an IEP (at no cost to the parent) under the IDEA; The remaining 50% are considered to have social barriers to academic achievement and these needs are met under the ‘any barrier to significant life activity’ clause of Section 504 of the RHA; On the whole schools have been reluctant to fulfil their responsibilities under the IDEA and RHA, with some scepticism over the utility of the medical label ADHD, and due to the funding structure in the United States services vary greatly from school district to district; Research in the United States reveals that many parents seek an medical ADHD diagnosis only after dissatisfaction with education institution responses and primarily to secure addition special education services. An overview of Australian education policy and ADHD The situation in Australia is not dissimilar to that of the United States. There are no federal or state policies relating specifically to ADHD, and neither is ADHD considered a specific learning disability (NHMRC, 1997) some funding is provided by the Federal Government. Additional funding does not however come from property taxes in school districts but from general states expenditure or school fees in private schools. Primarily state education departments and individual schools are left to respond according to perceived demand from within their annual general education funding. Federal funding support (DEETYA, 1997) amounted to $934 million to state governments for public school teacher salaries, curriculum and professional development, as well as a further $1.8 billion to private schools in 1997. It also consisted of $147 million to special literacy and numeracy programs, and a further $72.86 million in 1997 for states to use at their discretion for special learning needs. The one area in which ADHD does relate to federal initiatives is under the Commonwealth Disability Discrimination Act (DDA), which enables some families access to a Child Disability Allowance, and recommends the production of Student Action Plans. While some interpret aspects of the DDA as an equivalent to the US Section 504, within the Commonwealth State Disability Agreement, states have not bee n required to provide services for students who experience barriers to significant life activities. As a consequence responses from states have been typically limited and have consisted primarily of guidelines for referral for assistance under existing ser vices, and the production of procedures for monitoring medication prescription. Within some states however, the impact of the DDA, and state equal opportunity legislation, has resulted in positive initiatives. For instance in South Australia, the Talkback Project (DECS, 1993) recommended greater inclusion for students with disabilities in conventional classrooms, and the development of Negotiated Curriculum Plans (a Student Action Plan similar to the American Individual Education Program). This was followed by the production of the Students with Disabilities policy, which outlined services and strategies according to educational criteria. The South Australian situation was again reviewed (MACSA, 1996; MACSA, 1997), with recommendations of additional funding strategically targeted to learning difficulty and educational outcomes (rather than diagnostic labels). In South Australia a set of educational guidelines were set for release in 1997 but continue to hold the status of working papers given to them in 1996 (DECS, 1996a; DETE, 1998). These papers, acting as a clarification similar to that of the US Education Department in 1991, identify support within existing services. This support could take the form of a Negotiated Curriculum Plan, guidance officer support, participation in federally funded literacy or numeracy programs, referral to a behaviour management unit, or referral to other service agencies. These guidelines highlight practical interventions for cla ssroom teachers, relevant policies for students with ADHD, and appropriate bodies for referral under existing systems. There remains however few services within South Australia for the specific social and educational needs of students with ADHD, a situatio n emphasised by a recent study (Atkinson et al., 1997) that reviewed government policies relating to ADHD in South Australia. In relation to health, Atkinson et. al. (1997) found no specific services available in South Australia, while the medical diagnosis was perpetuated by cheap listing of some drugs and Medicare bulk-billing arrangements for general practitioners. Further, they found no support within education systems unless a special education or disability category could be attained for co- morbid disorders. They found: …there are no policies specifically governing children with ADHD and the two policies with greatest relevance do not serve the children well (i.e., mismatch in the case of discipline and omission in case of disability). The result of this system has been that in- service training regarding ADHD has been provided to teachers on an ad hoc basis with many teachers apparently obtaining information through self- generated networks (Atkinson et al., 1997, p.26). The only support available to parents in South Australia was found to be through independent community groups and medication if prescribed. The South Australian situation is far from unique. Concerns about a possible gap between service provision theory and practice for ADHD not only exist nationally, but have also been raised internationally (Bussing et al., 1998a; Damico & Augustine, 1995; Hazell, McDowell, & Walton, 1996). Summary There are no specific policies relating to ADHD in Australia, and largely it is deemed a state issue; what federal assistance is provided comes through general funding, special initiatives such as literacy and numeracy projects, and provisions under the DDA; currently states are not required to fulfil all the requirements of the DDA and that may include a section similar to the US Section 504 of the RHA; Within South Australia there has been an initiative given working status since 1996, which highlights practical intervention strategies and support under existing services much as the US education department’s clarification did in 1991; This working document has come under some criticism for failing to see the broader issues associated with ADHD in schools, but this is not a criticism unique to South Australian educational responses. Limitations in Australian policy highlighted by this study This report is based on a four year doctoral study into secondary student perception of policy and services for ADHD. It takes in research data drawn from the Australian and American contexts, and consulted students diagnosed with ADHD, parents, and teachers. One of its most significant findings is that while the United States situation theoretically assures the provision of services to meet significant social barriers to learning for student with ADHD, there is currently no similar clear provision within Australia. Current responses to the ADHD situation within Australian education departments at this stage have been primarily reductionist classroom intervention strategies centred in notions of individual deficit. Little consideration has been given to a sociological perspective on ADHD policy and the significant social barriers to learning and success of students with ADHD in schools. Overwhelming, in interviews students found current interventions based on remedial education and not social barriers to learning condescending. In addition parents expressed concern that the problems with self esteem, motivation and performance were not due to academic difficulties, because the majority of students with ADHD are of average intelligence or quite bright. Problems occurred because of social barriers to success in the education environment. Both parties were acutely aware that curriculum delivery, school behaviour management strategies, class sizes, pressures on teachers, school structures and priorities in school presented significant difficulty for educational success. However neither group held much hope that the school system would change, and hence focussed their energies on assisting individuals fit the current schooling environment. This situation is perhaps not surprising given the recent emphasis in federal education policy based on market demands (Smyth et al., 1998) and funding supplied on the basis of individual deficit rather than social barriers to achievement (Thomson, 1997). In this light academic based literacy, numeracy and remedial education efforts are of little benefit (Comber et al., 1997). Currently teachers are in a quandary as how to balance the needs of the many with the needs of the few in a context of increased integration and decreasing real funding and resource provision. Like the American situation, Australian teachers are caught in the middle of a number of competing demands (Atkinson et al., 1997; Martin, 1997), not the least of which are the demands of parents and students. This study found that over the last five years South Australian education responses have been caught in a state of stasis, with recent initiatives and debates not dissimilar to those made in relation to Hyperactivity some twenty years ago (Hyperactivity Association of SA [HASA], 1978). One alarming result of this situation, confirmed by the accounts of students, is the sole use of medication to treat ADHD. Recent reviews of the South Australian context have highlighted how current government policy may catalyse this situation (Atkinson et al., 1997) and exacerbate social inequalities in diagnosis and treatment of ADHD (Prosser & Reid, 1999). The cause for alarm is that not only does this fail to meet the widely recommended need for multi- modal practice with ADHD (APA, 1994; NHMRC, 1997), but it masks a significant issue expressed by the students and concerned parents consulted in the study. While medication is often effective in calming students in the primary years of schooling, increasingly as young people enter adolescence, secondary schools make increased demands. This study has found that when the opportunity to develop social skills with students in primary schools through a multi- modal approach is neglected, there re-emerge social significant barriers to success in secondary schooling environments. Clearly, a review of the effectiveness of current ADHD education service strategies needs to be undertaken, and in particular, student, parent, teacher and sociological perspectives should be sought. This would go a long way to the current imbalance within education policy to accept existing conceptions insensitive to the social experience of ADHD and interventions based in existing services. Summary While in the United States there is provision to meet significant social barriers to learning for students with ADHD under Section 504 there is no similar policy in action currently within Australia; Responses that have been made have been primarily reductionist focussing on classroom intervention strategies and notions of individual deficit; Students, parents and teachers, who in this study demonstrated a greater sensitivity to the social barriers to academic achievement associated with ADHD, have apparently had little input into current education policy and initiatives; This situation is in line with recent trends in federal education policy based in market demands and funding supplied on the basis of individual deficit rather than social barriers to achievement; One result of this situation is that many of the debates and discourse around ADHD and education are not dissimilar to that of Hyperactivity twenty years ago; Another result is the growth of medication use to treat ADHD because of lack of public services to support multi-modal treatments; One finding of this study is that medication alone can calm students and assist with learning problems within primary years, but neglected social needs remerge and present significant barriers in secondary schooling environments. The study recommends that student, parent and teacher perspectives should be sought not only because they show a greater sensitivity to the social issues around ADHD, but because they counter the inclination amongst policy initiatives to define problems and identify interventions within existing conceptions and services.