Informed Consent In Special Education Conceptual Definitions And Implications For Practice David Phillpott |
Abstract
Introduction Special education is, at its core, a process of individualized planning to support the unique needs of students with exceptionalities. Teachers and parents meet regularly to cooperatively design a support plan based on the identified strengths and needs of the child, often referred to as an Individualized Education Plan (IEP) (Heward, 2000; Winzer, 2002). Legislative provisions for special education placement and planning stipulate informed consent and parental involvement at all levels of decision-making (Brown, 1998; Rothstein, 2000). In fact, increasingly popular is a shift towards family centered, interagency approaches of case management that strives to optimize parental involvement in the decision-making process (Philpott, 2002; Dunst, 1997; Lipsky & Gartner, 1997; Maclean & Marlett, 1995). Kirk, Gallagher, and Anastasiow (1997) identify this as a growing trend and states that, "A major movement in the United States is under way to give parents more authority in decisions related to their child with disabilities. Called parent empowerment, this movement aims to increase parents' control over decisions relevant to their child" (p.120). The effectiveness of this role can depend on several factors, including the sincerity of the parents to partake in the process and the willingness of the school to welcome them (Fielding, 1990). Tiegerman-Farber (1995) state that, “It is in the best interest of education, its reform, and its success to educate parents and focus their skills as child advocates” (cited in Tiegerman-Farber & Radziewicz, 1998, p.176). Riley (1994) posits that parental involvement in education has been a growing trend with an increased focus on education of parents to facilitate active and effective involvement. The result has been a stronger voice of parents as advocates for the needs of their children. Loxley and Thomas (1997), in an international review of special education policy, found a “consistent development towards the democratization of special education” (p.288) with parents having a larger input into decision-making processes through an increased focus on collaborative practice. Fine (1991) outlined four key objectives of collaboration with parents such as including parents in decision making for their child, educating parents for participating in decision making, helping parents better cope with certain issues that may interfere with their participation in the educational process of their child and, enabling and empowering parents to actively participate in their child's education. Davern (1996) stressed the need for strong and clear channels of communication between the student's home and school in order to maximize the effectiveness of this process. This need for better communication between home and school, as well as the growing parental involvement in special education planning, is not rooted solely in the philosophy of a collaborative decision-making model. Parents have been developing a growing sense of their legal and social right to be involved in this process for some time. Weber (1994) identified this trend of parental awareness of their legal rights:
Canadian schools have long recognized the right of parents to be involved in the education of their children. Mackay (1984) states that, "The primary responsibility for educating and raising children rests with the parents, not the state" (p.58). In fact, any actions of educators in Canadian schools follows a doctrine of "in loco parentis" (in place of parent) where teachers' actions are guided by what are perceived to be those of a reasonable and prudent parent. In Canada, the adoption of The Charter of Rights and Freedoms (1982) has done much to inform parents of the legal rights of children with disabilities. Weber (1994) states, "....the Charter also gave impetus to a practice that had developed a momentum of its own: namely, recognition not only of the rights of parents, but of the potential value of their contribution to an exceptional student's education" (p.12). Indeed, parents of students with exceptionalities are more involved and legally informed than ever before. Winzer (2002) outlines that Canadian judicial activity in special education is currently centered around three concerns: the principles of inclusion; the willingness of advocacy groups to support parents; and interpretations of the Charter of Rights and Freedoms. Despite this protection of parental right to be involved, Smith (1990) found there were differences between the legislated intent and practice. Lloyd (1995) reported that dealing with parents is often cited as the most frustrating aspect of the job for special education teachers and school personnel. Likewise, parents reported frustrations in having school personnel recognize the needs of their child and in them having only a token role in the decision making process (Philpott, 2004; Gable, Korinek & Laycock, 1993; Harry, 1992; Leyser, 1985; Yanok & Derubertis, 1989; Voltz, 1994). Rock (2000) further comments on this by stating that the barriers to true parental participation are complex with “parents entering the process with a distinct disadvantage” (p.35). Case (2000) polled parents of special education children and found that the “parent-professional relationship remains one of disparity, with the professional persisting in the expert role” (p.287). Case also concluded that with interagency planning teams this problem was exacerbated by a lack of information sharing and a fragmentation of services. Turnbull and Turnbull (2001) state, “Too frequently, professionals interact with families in a way that connotes expert power and many parents believe that they can contribute little to educational decision making” (cited in Turnbull, Turnbull, Shank, Smith, & Leal 2002, p. 96). Yanok and Derubertis (1989), in a comparative study of regular and special education parental involvement in education, found that legislative provisions had done little to ensure the increased involvement of special education parents. Vaughn, Bos, Harrell, & Lasky (1988) found that parents assume a passive and minimal role in the meetings. This finding was consistent with an earlier study by Goldstein, Strickland, Turnbull and Curry (1980) in which it was observed that meetings tend to be short (36 minutes on average) with parents contributing less than 25% of the discourse. In a later study, Able-Boone (1993) found it was usually the child’s mother who attended the IEP meeting. Harry, Allen and McLaughlin (1995) conducted a three-year observational study and identified what they referred to as a token role for parents. They found that parental participation declined over time and their involvement was usually limited to securing signatures for consent purposes. This “securing of signatures” approach to parent participation was identified by Philpott (2004) in which parents reported that participation in interagency school meetings is often characterized by their being asked to sign documents without knowing what they are signing. If parental involvement is indeed central to educational planning and is legislatively mandated, full understanding of the process and possible implications of their decisions is crucial. Subsequently, an examination of the legal concept of informed consent is warranted. Informed Consent Given the responsibility of parents in the education of their children, there is little doubt that their approval is required for special education planning. The implications of adapting instruction and curriculum to meet the needs of exceptional students raises the stakes for higher accountability to parents. Signed parental consent forms have become an integral part of the documentation process for special education. While the legal concept of informed consent had its origin in health care, it has long since found its way into the special education vernacular. With inclusion being the predominant philosophy in Canada (Winzer, 2002; Philpott, 2002; Weber, 1994) placement decisions, and the process used to arrive at those decisions, are taking on a greater importance. Brown and Zuker (1998) speak to this issue of procedural fairness in educational planning:
Today special education policies, procedural guides or provincial statutes outline the concept of informed consent and articulate clear methods to ensure that such is followed. The doctrine of informed consent references the recognized right of an individual to consent to treatment or actions which may limit or affect their fundamental constitutional rights of life, liberty and security of the person. Given that school systems deal primarily with children who have not reached the age of consent, parents are responsible for granting such consent. Canadian law stipulates that the doctrine of informed consent have three elements including: competency to give the consent; full knowledge of the nature of the procedure being consented to; and that the consent be voluntarily obtained. Case law has also stated that the patient needs to be fully aware of all viable options before the consent can be given (Malette v. Shulman, 1990). When parents are giving consent for their child a fourth element enters into consideration, that being whether or not the procedure is in the best interest of the child. What emerges in practice is an awareness that informed consent is much broader than a parent’s signature. The implications of this for educators are numerous. American Law Special education in Canada is largely affected by movements in the United States (Weber, 1994). In the United States, as in Canada, education is primarily a regional (state/provincial) responsibility. The American Constitution, like its Canadian counterpart, serves to establish national standards of equality and fairness for its citizens. In America, the Constitution empowers the national Congress with the right to set federal statutes that will help implement principles set out in the Constitution. Subsequently, a number of federal statues have been passed that deal specifically with special education. Chief among these is The Individuals with Disabilities Act (IDEA) which was approved by Congress in 1990 and replaced its predecessor, Public Law 94-104. Rothestein (2000) clarifies this by stating "Although education is primarily state controlled, special education, in practice, has become federally controlled by the IDEA. Although states are not required to follow IDEA requirements, they must do so if they wish to receive federal funding for special education. The federal budgetary support for special education is of extreme importance" (p.40) and, as such, tends to establish a standard of practice. The IDEA statute references the parental right to be informed of and to consent to interventions for their child. It is closely linked with the concept of due process, where parents must also be made aware of their right to appeal decisions affecting their children. Rothstein (2000) states:
Rothestein goes on to expand on the need for notice by stating:
While Canada does not have federal statutes similar to IDEA (nor the accompanying funding mechanisms), case law can serve a similar function of nationalizing standards of practice in this country. While education is a provincial responsibility in Canada, conflicts are often settled by court rulings in similar cases from other provinces and/or the federal Constitution. Canadian Case Law Case law is an important concept in the Canadian judicial system and one that often crosses provincial boundaries, thereby serving as a national legal standard. Mackay (1984) defines case law as, "....a seamless web; it is essentially an accumulation of judicial rulings over time. Once a judge establishes a legal rule, it is binding on lower courts." (p.5). Subsequently, in defining what is meant by informed consent in Canada, courts often look to other cases that have previously dealt with this issue. While policy is set provincially, judicial rulings have a huge impact on policy development in that no policy can override law – either legislated statute or case law. Educational policy and practice therefore, is greatly influenced by judicial ruling from educational and other legal cases. One leading medical case offered a judicial interpretation of consent. Malette v. Shulman (1990) that went before the Ontario Trial Court and was later appealed to the Ontario Court of Appeal in 1990. In the case, Malette was injured in a car accident and was unconscious upon her arrival at the emergency room. The attending physician decided that a blood transfusion was required. However, a nurse discovered a card indicating that the patient was Jehovah's Witness and, based upon Malette's religious convictions, refused a blood transfusion. The doctor decided that the transfusion was necessary to save the patient's life and proceeded. The plaintiff's daughter requested that the transfusions cease, but the doctor proceeded nevertheless. Upon recovery, the plaintiff filed charges of battery against the doctor to the Supreme Court and won. The case was later appealed to the Ontario Appeal court and subsequently dismissed, in support of the lower courts ruling. In their verdict, the court stated :
This definition of informed consent and the right of an individual to decide his or her course of treatment could be applied to educational circumstances. The court referenced that in giving consent the patient needed to be made aware of all the possible consequences of the treatment as well as other possible courses of treatment. Other cases such as Johnston v. Boyd (1996) and Van Mol v. Ashmore (1999) reinforces this legal concept and strengthens the need for the patient to be made aware of alternatives. Given that informed consent in education is granted by a parent because the child is a minor, the case of B.(R) v. Children's Aid Society of Metropolitan Toronto (1995) is of relevance. The case speaks to the need for parents to make decisions that are in the best interest of the child. In this case, Jehovah's Witnesses refused to give consent for their critically ill daughter to have a blood transfusion. The hospital sought and obtained a wardship for the child, during which time she received the transfusion. Her parents subsequently sued and the matter ended up at the Supreme Court of Canada, who upheld the decision. In their verdict they stated:
This concept of “best interests of the child” has important implications for educational practice, especially within a concept of who, in the decision-making process, has final say. While it is generally considered that parents must consent to accommodations and supports for their children, they do not necessarily have final say in what is best for their child. Many provinces, Newfoundland included, practice a strong team decision-making model to help delineate what is in the best interests of the child. In this way, conflict is usually settled at the school level. However, cases can be taken to the courts to help determine who gets final say and/or what is in the best interests of the child. One well known case is that of Eaton v. Brant County Board of Education (1997), initially heard by the Ontario courts but eventually appealed to the Supreme Court of Canada on grounds of discrimination under the Canadian Charter of Rights and Freedoms. Emily Eaton was a severely disabled student who had been in the neighborhood school with supports under a program for inclusion. After three years of struggling to meet her needs in a regular class the school board felt that Emily would be better served in a special segregated class. The parents disagreed and appealed to the special education appeal board which upheld the decision to place her in a separate program. The parents then appealed to the Ontario Divisional Court who dismissed the application, in support of the ruling for placement in the separate class. A subsequent appeal to the Ontario Court of Appeal was heard and the decision to place her in a separate class was over-turned on the basis of discrimination under the Charter. The school board then appealed to the Supreme Court which heard the case and dismissed the decision of the Ontario court, re-instating the school board's decision to place her in a separate class. While the majority of the ruling dealt with the issue of discrimination under section 15 of the Charter of Rights and Freedoms, the court did reference issues of decision-making bodies and parental consent. Their ruling, though long, holds direction for educators:
Emily Eaton's case is important for many reasons. Placement is often a point of disagreement between parents and schools and one in which consent can be withheld. Proceeding to place a child without consent is a strong move for a school board. However what was central to the court's decision was that alternative placements (treatments) had been explored and were not successful. This proven failure of the regular classroom to meet Emily’s needs is central to the verdict. The school district was able to successfully argue that it was not in Emily’s best interests to continue with a program of inclusion. With this proof they were able to override the parents’ wishes and negate parental consent; however, one can only speculate on the court’s decision if the separate class was to be the initial placement for Emily. “Best interests of the child” would then have been a much more arguable construct. Bowlby and Wooton Regan (1998) in commenting on the implications of the Eaton case for educators in conflict with parents over placements state:
It is cases such as this that help guide educational teams, including parents, as they strive to develop comprehensive and effective plans for exceptional children. Case law can only be considered relevant if the facts of the cases are similar with the decisions rendered being binding to all lower courts (Mackay, 1984). In defining informed consent for education, and in particular, for options for students with exceptionalities, courts would look for precedent in other provinces and from disputes in other professions. Provincial law It is with this legal interpretation that educators define informed consent for their practice in each of Canada's provinces through legislation specific to education and schools. In the province of Newfoundland and Labrador The Schools Act (1996) (Statutes of Newfoundland, 1997) references both informed consent and due process. This includes section 20, "(1) A parent of a student attending a school is entitled to (a) be informed of the student's attendance, behavior and progress...". The Act also references the need for consent to be obtained when releasing information on a child. Section 12(b) states that information cannot be released on a child, "Without the written permission of the parent of a student, or the student if the student is 19 years of age or older...." Due process is more directly referenced under a section titled Appeal, Section 22,
Special education is specifically referenced in this legislation in Section 117.b (v), “The Minister may issue policy directives, including policy directives with respect to…(ii) special education.” It also outlines that each of the elected boards shall, “…ensure that policies and guidelines issued by the Minister relating to special education for students are followed in schools under its jurisdiction.” To this end, the Department of Education’s Special Education Policy Manual -draft (1999) outlines 34 separate policy guidelines for meeting the needs of children with exceptionalities. Informed consent is referenced at several points in the policy manual and well-entrenched in practice.
Policy 18 references the delivery model for special education planning in Newfoundland and Labrador, named the Individual Support Services Plan (ISSP). This process of planning and writing an individualized plan to meet the needs of a child has parents and the student as core members of the planning team. Before the planning process can be initiated, referrals made, or special education delivered, the parents are required to sign consent forms as outlined in the document Coordination of Services to Children and Youth: Individual Support Services Plans (1996). Consent forms are also mandated for adaptations to or accommodations for the provincial curriculum, as outlined in a second document titled Pathways to Programming and Graduation: A Handbook for All Teachers and Administrators (1998). The entire model is one in which the role of parents is prioritized and provisions are implemented to ensure that they are fully aware of the process. In addition to guidelines imposed by the provincial government, each local school district is mandated to develop its own policy guides to implement the provincial policy. The Special Education Policy Manual (1999) references this in policy 2: "It is directed that each school board will maintain a manual of policies, procedures and guidelines for the provision of programs and support services to students" (p.5.6). These manuals further outline procedures to inform parents of the programming supports for their child. Each province has its own legislative provisions for consent to be obtained. Ontario, for example, mandates that each school board establish a board whose job it is to review referrals for special education and decide on placement. The IPRC (Identification, Placement and Review Committee) reviews all pertinent information on a child, including assessment and performance history, and decides if the child is "exceptional". Signed parental consent must be obtained for the IPRC to review the child, the parent must receive full information on the process, have 10 days notice of the meeting, and be interviewed by the committee. In adjudicating placement options or programming supports they must consider inclusion in the regular classroom with necessary supports. The committee must then send a written copy of the report to the parent immediately upon completion. The parent then has fifteen days to appeal the decision. Placement and/or program recommendations are then implemented when signed parental consent is obtained (Brown, 1998). Ethical Standards While informed consent is well anchored in law and educational policy it is also reinforced in the ethical principles of many of the professions that deal with special education students. Psychologists who are often involved in the assessment process, counselling and programming supports have the concept of informed consent clearly defined in their ethics. The Companion Manual to the Canadian Code of Ethics for Psychologists (1991) states that, "...psychologists have a responsibility to develop and follow procedures for informed consent, confidentiality, fair treatment, and due process that are consistent with those rights" (p.27). The manual goes on to cite Principle 1: Respect for the Dignity of Persons of the Code of Ethics:
Similarly the Canadian Counselling Association, the professional group for counsellors in Canada, has adopted its own ethical guide for members. The Code of Ethics (1999) references the concept of informed consent throughout its ethical guidelines. While both of these guides are not legislation, each professional group has disciplinary procedures for members who violate their guidelines. While there is no national teaching agency for special educators, the internationally based Council for Exceptional Children (1997) has a code of ethics for all professionals working with students with exceptionalities. In a section titled "Parent Relationships" the code references informed consent by stating that special educators:
Implications for special educators Within this framework of legal, procedural and ethical guidelines is the practice of the special education teacher. There is an inherent responsibility, ethically and legally, for teachers to be fully informed of the policies and procedures of their employer (local school board), policies of the provincial Department of Education, and the legislative guidelines in their province. Teachers would be well-advised to inform themselves of the ethical guidelines that may apply to them in their professional careers. In addition, an informed practitioner is one who is aware of recent court rulings on cases that could potentially fall within their field of practice. This paper outlines that informed consent is much more than the securing of parent signature on the appropriate school district form. Rather it requires a recognition of the parents’ competency to give consent, their full knowledge of what it is they are agreeing to – including all implications of and alternatives to the intervention, and that the consent is being given voluntarily. Case law also identifies that the procedures be developed in the best interests of the child and that an appeal process be available to the parents should they disagree. While this may sound rather straight forward, the reality in practice is not as simple. Competency of parents might well surface as a salient issue when parents themselves also have an exceptionality. Given that many of the disabling conditions witnessed in children are genetically linked, cognitive and emotional competency can be an obstacle that educators need to be aware of. Educators must also remain cognizant of the strong emotions that accompany raising an exceptional child and the ability of stress to cloud judgments. In the field of education, understanding the consequences of decisions is complicated by the cumulative structure of the curriculum. Instructional decisions made at one grade level may limit the options available to the child at later grades, as well as career opportunities for the student. Additionally, a student’s profile of strengths and needs is not static and requires close monitoring to ensure that decisions are based on current information. The issue of voluntary consent can be biased by the parents' desperation for their child to receive help and a subsequent willingness to make rash decisions in an attempt to avail of a service. The school year is remarkably short and parents may feel pressured to consent to an intervention in an attempt to salvage the child's grades for that year. Finally, the requirement for all options to be reviewed with the parent prior to the consent is difficult. Options must be possible in order for them to be considered as viable. As educational resources are often scarce there may well be few options available. This final stipulation is one that is not strongly referenced in procedural guides, though stated by court rulings. The case of Emily Eaton speaks to the best interests of the child as perceived by a team of decision makers after having tried alternative options. Maintaining strong communication with parents and documenting planning activity is essential in this accountability process, both to maximize the effectiveness of programming and to protect against malpractice. Teachers should be strongly advised to ensure that notes of meetings are kept in students’ files and that parents are sent copies of those notes. Keeping parents informed of progress on a continuous basis will do much to enhance a collaborative decision-making model where all participants are aware of the child's needs and progress, thereby promoting a parent's understanding of the need for alternative approaches. Finally, educators should be proactive in encouraging both of the child's parents to attend meetings, by either scheduling them at more convenient times for parents or going to the family home. Where this is not possible, or in the case of single parent families, a relative or friend can be invited to accompany the parent as a support person. In exploring this construct from the perspectives of the courts, legislation, written policy and ethical practice, educators are reminded of the need for diligence in their practice. Ultimately it is the courts who have final say in the planning process and who can determine whether consent is informed and/or required. This realization holds a challenge for educators to be informed, open and fair in the collaborative planning process for their students. References Able-Boone, H. (1993). Family participation in the IFSP process: Family or professional driven? The Transdisciplinary Journal, 3(1), 63-71. B.R. v. 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