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Perspective on Parental Involvement in the Diagnosis and Treatment of Learning Disabled Children

James A. McLoughlin, PhD, Denzil Edge, PhD, and Bernard Strenecky, EdD

The provisions of the Education for All Handicapped Children Act can have a profound impact on parent-teacher relationships. The potential exists for a cooperative effort, as well as for an antagonistic one. This paper argues for the importance of parent-professional cooperation. Recognizing that new relationships often have to be consciously developed, the authors suggest a number of roles which can foster cooperation in educational settings. — G.M.S. Parents should be involved in services for their learning disabled children. In clinics, schools, homes, and communities there are many ways parents and professionals can cooperate more fully. Each phase of the intervention process, from identification through evaluation, offers ample opportunities for parent involvement.

P

arents are beginning to play an essential role in providing services to children with learning disabilities (Wallace & McLoughlin 1975). Until fairly recently parents have participated in learning disabilities programs basically as advocates and lobbyists for legislative, financial, and other means of support. However,

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increased parental involvement in the actual diagnosis and treatment of learning disabilities has accompanied the rapid increase of professional services in schools and clinics. The role of parents has been enhanced by the increased recognition of the significance of the home and community as settings in the total learning disability program. PL 94-142 has also had many implications for active involvement by parents of children with learning disabilities. When parents are actively involved with professionals, three processes occur: (1) the parents and professionals exchange information, (2) the parents are encouraged to grow in their role, and (3) a trusting, productive relationship between Journal of Learning Disabilities

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292 parents and teachers is built (Northcott & Fowler 1976). Professionals and parents must recognize their relationship is mutually beneficial; it must be based on respect and cooperation. There is a demand for due recognition of the feelings and emotions of parents. When parents are involved, parents and professionals establish a partnership in assessing and remediating the child's learning disability. Furthermore, a commitment of time and effort has been made by everyone involved. Parents can become involved in many ways and in many settings. Recent changes in procedures for assessment and remediation suggest concrete activities for parents in coordination with professional efforts. The role played by parents in learning disability services will be considered in clinics, schools, and the home and community. Each of the five major stages of learning disability intervention (identification, assessment, programming, implementation, and evaluation) will also be examined for possible parental involvement. Particular attention will be given the strategies which professionals can use to encourage this participation.

DIFFERENT SETTINGS Parents of children with learning disabilities are involved in the process of intervention at various settings where their children are being served. Professionals in each of these settings should assume the major responsibility to encourage the participation of parents. These efforts may take the form of arranging procedures with the needs of parents in mind, of establishing a role for parents to play in various aspects of the assessment and treatment program, and of directly training parents.

Clinics Parents often are directed to a clinic for diagnostic and perhaps tutorial help for their children. The clinical setting is apt to stereotype parental behavior because of its aloofness from the actual situation troubling the parent and its other intrinsic characteristics (McLoughlin

1977). Parents are prone to be passive when faced with the protocol, complexity, and status of the clinic. Further, they travel from clinic to clinic, agency to agency, in order to obtain additional information and a fuller perspective of the child's learning problem. The clinical setting frequently represents the last chance for obtaining substantive help for their child. Parents approach the clinical setting with all the frustrations and disappointments of the past and with fervent hope for the future. Realizing that the traits of a clinic and the perceptions of parents can work against productive parental involvement, a clinic staff can do much to create an atmosphere in which parents feel secure and contributive. Procedures can be designed with consideration given the affective needs of parents. This consideration may require the clinic staff to: (1) streamline procedures, (2) make requests for a reasonable amount of information, (3) respect the privacy and wishes of the parents, and (4) make a concerted effort to clarify and answer the concerned questions of the parent. Clinics can also do much to dispel the criticism of producing esoteric and limited information by de-emphasizing the traditional labels of handicaps, i.e., mental retardation, emotional disturbance, etc. (Reynolds & Balow 1972). The alternative to relying solely upon labels is to present a profile of a child's strengths and weaknesses. Thus a parent is not given an excuse for the child's learning problem, but rather a graphic profile of the whole child (Kirk 1972). The parents have an explanation, not merely an answer to the question, "Does my child have a learning disability?" This approach is particularly appropriate in the case of learning disabilities since it provides the parent with a detailed analysis of the child's strengths as well as his concomitant weaknesses, the unique feature of a specific learning disability (Gallagher 1966). Furthermore, parents realize a greater sense of direction if given educationally relevant information and strategies. A diagnosis that is vague and does not help parents to understand their

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293 child's specific learning disability is frustrating; the lack of attention to information that helps in designing educational strategies is lamentable. As parents take a larger role in learning disability programs, they will adopt concrete objectives to accomplish with their children. Decisions about placement must also be made cooperatively with parents (Abeson, Bolick, & Hass 1975). Such participation is mandatory, not merely advisable. The questionable efficacy of special education services can be attributed in part to the passive or nonexistent involvement of parents (Gorham 1975). If parents recognize the goals of the learning disability program and have a vested interest in their attainment, the results are certainly bound to be better than they have been (Gallagher 1972).

Schools Public school educators are keenly aware of the trend of more and more school contacts by parents who suspect that their child may have a learning disability. A recent survey in a western New York state suburb indicates that close to 50% of the guidance referrals received in one elementary school were initiated by parents who were concerned about their child's learning difficulties. Such information points to growing awareness and concern of today's parents. Where parental concerns are involved, it is very important that the school personnel create a feeling of mutual trust and cooperation between school and home. One way of building this bond is to invite parents to discuss their concerns when they have requested a referral for assessment. Those present at this initial conference should include the child's classroom teacher and the member of the school staff who is processing the referral. This conference should provide the parents with an opportunity to discuss the problem and explain the reasons for their concerns. The classroom teacher's presence is essential since he can report firsthand the current academic and behavioral performance of the child. After the problem has been discussed and all pertinent information has been shared, the group 34

should decide whether an evaluation of the child's problem is appropriate. Whether the referral is initiated by the teacher or another school professional, it is important that a conference be held with the parents before the child is tested to explain the purpose and types of tests to be administered and to alleviate any of their anxiety about the evaluation. This procedure offers an opportunity to establish rapport with the parents and to obtain additional information about the child. Parents can help the school by providing a developmental history or acquiring any information about private evaluations of the child. After the diagnostic testing has been completed by the school staff, the parents should be invited to the school for a second conference to interpret the results of the evaluation. The test results should be reviewed in light of how they relate to the child's class placement. If the school personnel recommend a special placement for the child, the rationale for the recommendation should be shared with the parents so that they and the school personnel can make a mutual decision of whether or not the child should be placed. The parents should participate in the development of the individualized educational program. They should also be given a copy of the educational objectives for skill areas which will be worked on. It is particularly important that the school provide the parents with frequent written and oral reports about their child's progress (Dembiniski & Mauser 1977). Schools are also wise to organize parents' groups or, even better, to encourage the development of such groups by parents themselves (Cain 1976). The organization of local ACLD chapters enhances parental involvement. These parents' groups can supply a forum for sharing information on new legislation, school policies and procedures, and problems in the programs, for discussing common problems and experiences, organizing useful activities, and actually training parents (Kroth 1975). Finally, as aides parents can contribute much to efforts of teachers and other school personnel to offer greater individualized attention to the Journal of Learning Disabilities

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294 children (Poper 1976). In some schools parents have served as academic tutors, generally of children other than their own, and as advisors on committees concerned with grading, curriculum, and materials.

Home and Community Parental involvement ideally should encompass the home and community. Parents can learn skills to help the social and academic progress of their children. They can gather information about a problematic situation at home and subsequently institute a plan to change it. Knowledge of behavior modification, its possible applications, and the reasons for its use have given many parents a vehicle for home involvement (Hall, Axelrod, Tyler, Grief, Jones, & Robertson 1972, Patterson & Gullion 1968). Often parents are offered the opportunity to acquire skills in assisting the child academically or socially in the home through educational assessment clinics, local school districts, and universities (cf. Kroth 1975). Political and legislative activism is another avenue through which parents can be incorporated into the effort to develop programs for children with learning disabilities. Through political involvement parents can help obtain the necessary support to assure the proper education of their children. Getting the proper education is a long process since the regulations and funding for services must be made available before services can be implemented. Membership in community-action groups concerned with the needs of children is also profitable, since learning disabilities can be associated with other child-related problems such as juvenile delinquency, child abuse, and emotional disturbance.

DIFFERENT SERVICE FUNCTIONS Across these arenas of parental activity, there are five major service stages in which parents can play a role: (1) identification, (2) assessment,

(3) programming, (4) implementation, and (5) evaluation. Professionals can facilitate parental involvement in each of these stages. In Table I there are listed some activities by which parents can become meaningfully involved in various phases of learning disability services and some activities by which professionals can encourage and support their participation.

Identification Parents perform an indispensible service by being alert to early signs of learning disabilities. It is essential to be aware of the services available and to refer the child if necessary. Professionals must ensure that the information and the services are available and duly publicized.

Assessment With recent changes in legislation concerning placement procedures and due process, parents have a definite role in the diagnostic process. However, without professional encouragement, a more formalized position will not necessarily mean a more active role for parents. For example, beyond granting the necessary permission and accepting the decisions made by the professional, parents should be serving more fully as team members by gathering observational data at home, by supplying relevant information from previous assessments, and by actively participating in the placement decisions. Professionals encourage parents by explaining assessment procedures for learning disabilities, by requesting and using information supplied by parents, and by conducting conferences clearly.

Programming Perhaps the most sensitive phase of services for learning disabled children is the development of a remedial program. Now, with the signing of PL 94-142, parents must approve of and participate in the deliberations about placement and remedial goals. Rather than contributing mere presence and acquiescence, parents will assist in writing the individualized educational program. Thus parents can reinforce and support the

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TABLE I. Parental

involvement.

Stages

Parental activities

Professional facilitation

1

Identification

Be alert to early warning signs Be aware of etiology Be aware of services Refer child to proper service Talk to other parents

Be aware of community resources Use public service media Make information available Offer parent education groups Assure adequate funding Make services available

1

Assessment

Maintain a developmental log Respond to interview questions and written questionnaires Cooperate with teachers and other professionals Be a team member Agree to assessment Attend committee conferences Supply relevant information from previous evaluations

Avoid jargon Be interdisciplinary Conduct conferences slowly and clearly Be realistic Be positive Supply samples of a child's work Write understandable reports Supply assessment reports

1

Programming

Consider appropriate placement options and program goals Choose a placement site and program goals cooperatively Identify and choose goals for own use Attend committee conferences Visit classrooms Read parents' literature Review materials

Encourage classroom observation Explain educational curriculum Demonstrate strategies and materials Design and supply parent activities Explain placement alternatives Point out goals for parents (if advisable) 1

Implementation

Be a classroom aide Join parent organizations (PTA, ACLD, etc.) Support efforts of professionals Model good attitude toward program Be a tutor Reinforce child's skills at home

Supply parent education groups Support parents' organizations Supply discussion groups Maintain home programs Design materials and activities for parent use Design formal parent intervention programs in school and home

Evaluation

Hold professionals accountable Be accountable Supply feedback to professionals Help evaluate educational plans Serve on parent advisory boards Support parent activism (ACLD)

Supply parent training programs Establish parent advisory boards Support parents' organizations Include parents' contributions in evaluation procedures Facilitate communication with parents

efforts of the teachers. The parents can also accomplish some goals of their own. However, professionals must explain the options in pro36

1 1 1

1 1 1 1 1

grams and goals. They can help parents identify activities to assist their children, such as reinforcing academic skills, participating in the Journal of Learning Disabilities

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of social skills, and

providing

enriching experiences.

Implementation Parents can take an active role in implementing the individualized program. As aides and tutors, they can assist teachers in the classroom. Homebased activities can also be performed by parents. Frequently parents find themselves in the position of encouraging and supporting the child in practicing a new skill and participating in a remedial program. Professionals must be prepared to supply parental training and discussion groups and to encourage parental activity in the actual program.

ACKNOWLEDGMENT

The basic research for the development of this article was supported by the Education Assessment Clinic at the University of Kentucky and by the Learning Improvement Center at the University of Louisville. Those interested in further information may contact Dr. McLoughlin.

REFERENCES

Evaluation No program is perfect; feedback is essential for improvement. Parents can supply essential information about the generalization of academic skills. They also are in an excellent position to judge significant changes in a child's attitude and social behavior. Professionals would be well advised to include parents' contributions in their evaluation design.

CONCLUSIONS Parental involvement is a key component for success in serving learning disabled children. The philosophy of including parents in all facets of the diagnostic and treatment procedures requires a great deal of commitment and effort. However, there are countless ways in which professionals can encourage parental activity in the clinic, the school, the home and community. Each and every phase of intervention affords possible, if not mandatory, opportunities for meaningful parental involvement.

ABOUT THE

learning disabilities at the University of Louisville, was trained at Ohio State University. Bernard Strenecky graduated from the University of Rochester. At present he is an assistant professor of education at the University of Louisville. Requests for reprints should be sent to Dr. McLoughlin at the Department of Special Education, University of Kentucky, Lexington, 40506.

AUTHORS

James A. McLoughlin received his degree in special education from the University of Arizona. At present he is an assistant professor in the Department of Special Education at the University of Kentucky. Denzil Edge, an assistant professor of special education and coordinator of the graduate program in

Abeson, A., Bolick, N., Hass, J.: A Primer on Due Process. Reston, Va.: Council for Exceptional Children, 1975. Cain, L.: Parent groups: Their role in a better Hfe for the handicapped. Exceptional Children, 1976, 42, 434-437. Dembiniski, R.J., Mauser, A.J.: What parents of the learning disabled really want from professionals. Journal of Learning Disabilities, 1977, 9, 578-584. Gallagher, J.: Children with developmental imbalances: A psychoeducational definition. In W. Cruickshank (Ed.): The Teacher of Brain Injured Children: A Discussion of Bases of Competency. Syracuse: Syracuse University Press, 1966. Gallagher, J.: The special education contract for mildly handicapped children. Exceptional Children, 38,1972, 527-536. Gorham, Kathryn: A lost generation of parents. Exceptional Children, 41, 1975, 521-525. Hall, R.V., Axelrod, S., Tyler, L., Grief, E., Jones, F.C., Robertson, R.: Modification of behavior problems in the home with a parent as an observer and experimenter. Journal of Applied Behavior Analysis, 1972, 5, 53-64. Kirk, S.A.: Educating Exceptional Children, 2nd ed. New York: Houghton Mifflin, 1972. Kroth, R.: Communicating with Parents of Exceptional Children. Denver: Love Publishing, 1975. McLoughlin, J.: New Perspectives on the Involvement of Parents in the Diagnosis and Treatment of Learning Disabled Children: Parents and the Assessment Clinic. Paper presented at the International Conference of ACLD, Washington, DC, March 1977. Northcott, W.H., Fowler, S.A.: Developing Parent Participation. In D. Lillieand P. Trohanis(Eds.): Teaching Parents to Teach. New York: Walker and Company, 1976. Patterson, G.R., Gullion, M.E.: Living with Children: New Methods for Parents and Teachers. Champaign, III.: Research Press, 1968. Poper, L.: A Handbook for Tutorial Programs. Brooklyn: IMI? Inc., 1976. Reynolds, M.C., Balow, B.: Categories and variables in special education. Exceptional Children, 1972, 38, 357-366. Wallace, G., McLoughlin, J.: Learning Disabilities: Concepts and Characteristics. Columbus: Charles E. Merrill, 1975.

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Perspective on parental involvement in the diagnosis and treatment of learning disabled children.

291 Perspective on Parental Involvement in the Diagnosis and Treatment of Learning Disabled Children James A. McLoughlin, PhD, Denzil Edge, PhD, and...
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