Lou Brown, Alice Udvari Solner, Grace Courchane, Kate Stanton Paule, Nancy Caldwell Korpela, Jack Jorgensen, Jacqueline Philpott, and Margaret Keeler
University of Wisconsin (UW) and Madison Metropolitan School District (MMSD)
Name of Student
The information contained in this manual was gathered from to , 199
The development of this inventory and the associated manuals was supported in part by Grants H086D00020 and H029D80019 to the UW and the MMSD from the U.S. Department of Education, Office of Special Education and Rehabilitative Services, Special Education Programs, Divisions for Educational Services and Personnel Preparation.
Table of Contents
I. Introduction ---------------------------------3
The Problem ----------------------------- 3 The Student ----------------------------- 5 The Relationships of Concern ------------ 6 An Overview ---------------------------- 7 Implementation Suggestions ------------- 9
II. The Student Profile ------------------------- 12
III. Values -------------------------------------- 40
V. Summary and Preferences --------------------- 298
Selecting Relationships for
Development – The Manuals ------------------- 305 References ----------------------------- 309 Additional Contributors ---------------- 312
The Problem "Kids laugh at me because of the way I walk and run and talk... I just want one day where no one laughs at me or makes fun of me." (Wisconsin State Journal, 12/18/93).
"He...is well liked by his teachers and the office staff, and...doesn't have one friend at school. No one to 'spend the night,' eat lunch with, or even talk with" (Daniel, 1987).
"Perhaps our family will learn to deal with the fatigue and stress we feel in knowing Aaron's only opportunities come from his mom, dad, or brother... and it will probably always be that way. Perhaps we'll resign ourselves to the despair that by making "special" camps and recreation, the community has effectively excluded Aaron from almost everything that is typical, regular, easily available and low cost" (Ulrich, 1989).
"Now she has graduated. Her days are long. Her many friends have gone their ways and there is no one to visit with except the many older adults living near. There is no one to laugh with when something funny happens, and no one to giggle with when a moment of happiness brings a smile to her lips. She deserves better than this" (Bennett, 1984).
The anecdotal reports of the parents above have been supported by the judgments of a variety of professionals (Amando, 1993; Biklen, 1992; Buckley & Bellamy, 1986; Cheney & Foss, 1984; Cole & Meyer, 1991; Forest, 1984; Gaylord-Ross & Chadsey Rusch, 1991; Hagner, 1989; Haring, 1991; Hayden, Lakin, Hill, Bruininks, & Copher, 1992; Kennedy, Horner & Newton, 1989, 1990; Kiernan & Bruininks, 1986; Kregel & Wehman, 1989; Rhodes, Sandow, Buckley & Albin, 1991; Schalock, McGuaghey & Kiernan, 1989; Shafer, Rice & Metzler, 1989; Taylor & Bodgen, 1987).
Van Deventer et al. (1981) reported that graduates with severe intellectual disabilities of the MMSD from 1971-1978 led unduly constricted vocational and social lives. While two subsequent follow-up studies of MMSD graduates reported more integrated vocational outcomes, limited social relationship ranges remained typical of postschool life (Brown et al, 1983; Brown et al., 1987).
The problem is longitudinal because the social lives of individuals with severe disabilities of all ages are terribly barren. The problem is comprehensive because a reasonable array of social relationships is absent in almost all instances. The problem is intense because the loneliness is unbearable and tremendous pressures are placed upon families. The problem creates terrible inefficiencies because people must be paid to be with them when they could enjoy much more humane and productive relationships at less or no cost. Finally, even those who do have social relationships with nondisabled persons are almost always dominated by adults in roles of authority. Far too often, this is patronizing and demeaning.
In sum, individuals with severe intellectual disabilities have extremely limited relationships with nondisabled persons. If their social lives are to be enhanced, educational policies and practices that engender a wide array of meaningful relationships across a life space must be designed and implemented. This inventory and the six associated manuals represent attempts to help realize this most important quality of life objective.
The "Student" refers to an individual who functions, or who is perceived to be functioning, intellectually within the lowest 2% of a naturally distributed school age population. Historically, IQ scores of approximately 50 and below and such labels as autism, multiply handicapped, cognitively disabled, psychotic, dual sensory impaired and moderately, severely and profoundly retarded have been used to describe her/him. Chances are great that he/she experiences communication, cognitive, social, physical, behavioral, sensorimotor and/or other difficulties in kinds and degrees reasonable persons would consider severely disabling (Sailor, 1988).
Disabled, in this context, means "not able to". If the label significantly or severely disabled is validly assigned, it is interpreted to mean that at least the learning and performance characteristics presented below are operative. These and associated characteristics cannot be denied, ignored, or minimized in importance. Neither can they be used to exclude or reject the student from integrated social experiences. Specifically, the student:
is likely to learn fewer skills than 98% of all others of the same chronological age;
needs more instructional opportunities and time to learn than almost all others;
will experience more difficulties transferring and generalizing that learned in one setting to others than almost everyone else;
will be among the lowest 2% of all those rated on any measure of adaptive behavior;
can learn much, but only that in the lowest difficulty ranges;
is considered "significantly delayed" in all academic subjects; and
is likely to forget more than all others if individually meaningful practice is not arranged. If allowed to forget, he/she will need more instructional opportunities and time to relearn that which was forgotten than almost all others.
The Relationships of Concern
A social relationship refers to a culturally respected, mutually satisfying and constructive interaction between a student who is severely disabled and a nondisabled schoolmate. A supportive companion is a competent, supervised and evaluated nondisabled schoolmate who assists, guides, protects, watches out for or otherwise assures that all goes well for a student with disabilities as they participate in meaningful activities together. The extra support provided makes the relationship different than those between most nondisabled peers. In this inventory, the social repertoire of a student will analyzed in relation to six kinds of relationships:
Extracurricular Activity Relationships;
After School-Weekend Relationships; and
Regular Education Relationships.
The six are representative and overlapping, not exhaustive or mutually exclusive. In practice, it will be relatively rare for only one nondisabled peer in a group to function as a supportive companion. Romantic and sexual relationships, those with someone who is also disabled, with neighbors and with much older nondisabled persons, except for coworkers and travel companions, will not be addressed.
True Friendships are among the most important relationships in the life of anyone. They are addressed only peripherally because precise strategies for developing them are not known to the authors. Perhaps as knowledge and experience accrue, actions that directly result in the development of True Friendships with nondisabled persons will be feasible. However, it is hoped that by developing a wide array of other relationships, True Friendships will evolve.
First, basic information about the student must be gathered and displayed in the form of a Student Profile. The purpose of the profile is not to induce the meaningless rerecording of information readily accessible elsewhere, but to provide efficient access to important facts.
Second, values relevant to a fair and decent social life are presented. As all values that should guide the development and enhancement of a social life cannot be articulated, users are strongly encouraged to adjust and supplement those presented. There are instances in which a phenomenon, as manifested in the life of a student, may not be in literal accordance with some of the values presented. Nevertheless, unusual circumstances may be operative that make it "acceptable", "the best we can do with what we have" or "justifiable under the circumstances." However, the actual reasons such phenomena are considered "acceptable" must be clearly stated, scrutinized carefully and rejected unless absolutely necessary.
Third, the realities of six kinds of social relationships will be compared to the standards embodied in the values.
Fourth, if the Individualized Educational Program (IEP) team and the significant others in the life of the student decide that her/his social life is not in reasonable accordance with the values, the social relationship preferences of the student, his/her parents/guardians, teachers and significant others will be determined.
Finally, the IEP team must then prioritize and select the specific social relationships that will be developed. After the selections have been made, users are referred to the six associated social relationship development manuals. For example, if the IEP team selects travel relationships for development, those responsible are referred to the manual entitled Developing Travel Relationships Between a Student Who is Severely Intellectually Disabled and Nondisabled Schoolmates. If the IEP team selects tutor relationships for development, those responsible are referred to Developing Tutor Relationships Between a Student Who is Severely Intellectually Disabled and Nondisabled Schoolmates. If the social relationships selected for development are not addressed in one or more of the six manuals, users are encouraged to seek relevant material elsewhere and/or develop an appropriate local strategy.
First, this inventory is offered as a strategy rather than a recipe. Users are encouraged to modify, localize, individualize and supplement any component whenever necessary. It will be necessary to copy or modify many of the charts and forms and to add to the information requested.
Second, the more disabled the student, the more comprehensive and detailed must be the information considered. However, it is not intended that valuable time be spent gathering unnecessarily precise information. Reasonable estimates based upon the direct experiences of the significant persons in the life of the student usually will be acceptable.
Third, most of the activities associated with this inventory are considered components of a legally required IEP. As such, they should be afforded the respect and professional scrutiny ascribed any other component. However, it is usually more effective if one or two concerned, competent and responsible persons compile information, organize meetings and assimilate ideas into plans of action. Although a professional may coordinate such activities, the student and the significant others in her/his life must be directly involved. When earlier versions of this inventory were being developed, several well intentioned professionals chose not to involve parents/guardians in order to save time and trouble and to "spare them the heartache" of confronting the realities of a meager social life. There may be occasions when some parents/guardians are unable to participate directly. Nevertheless, school officials have the responsibility to do everything reasonable to facilitate and maintain whatever involvement is feasible because:
Parents/guardians have important information about their child that is not otherwise accessible to professionals;
The social dynamics of an entire family must be considered if the relationships selected for development are to be realized; and
Their participation from the very beginning of the social relationship development process increases the probability that the most natural, resource efficient, enduring and integrated relationships will be developed and maintained over extended periods of time. Professionals come and go.
Fourth, as major components of the inventory are ideological in nature, it is extremely important that users develop and maintain a working familiarity with the values presented.
Fifth, it is extremely doubtful that the information required can be gathered and analyzed in a day or even a month. Users are strongly encouraged to perceive the process as continuous and dynamic.
Finally, this inventory is designed to be used by anyone concerned with the social life of a student who is severely disabled. It contains little professional jargon and can be implemented without highly specialized training. It is not a "professional tool."
II. The Student Profile
Much of the information required to complete this profile can be obtained from written records and telephone interviews of knowledgeable persons. It is not necessary that all information be gathered in time consuming and costly face to face interviews or in a short period of time. If the information requested is readily accessible in other documents, it can be referenced appropriately; e.g., "see 1994 IEP" and "refer to 1/2/94 Physical Therapy Evaluation." It is not necessary that it be rerecorded here.
Current School Year Graduation Date Years Left in School Career
Report the major reasons the student has been judged legally
eligible for Special Education and related services.
Record the IEP team members and the other persons who are directly involved in the completion of this inventory.
Name Student Mother Father Brother Sister Special education teacher Regular education teacher Occupational therapist
Job Coach Coworker Work supervisor Principal _____ ______________________ _____ _________________________ _____ _________________________
Student Gender M
Telephone - Home Work
Chronological Age Date of Birth
Domestic Home of biological Mother and biological Father
Home of biological Mother and Home of biological Father and Home of legal Guardian Foster Home
The total number of persons with disabilities who live in the domestic environment with the student is
The total number of persons who live in the domestic environment is
First names and ages of those who live in the domestic environment and their relationship to the student; e.g., parent, roommate with disabilities, sibling and live-in paid staff person.
NameAgeRelationship Preferred future living environment
FAMILY Name of Mother
Telephone - Home
Telephone - Work
Typical Days and Hours Out of Home
DaysHours M From To T From To W From To
R From To
F From To S From To S From To
Name of Father
Telephone – Home
Telephone - Work
Typical Days and Hours Out of Home
DaysHours M From To T From To W From To R From To F From To S From To S From To
With the assistance of another person
With the assistance of another person and with adaptations
Other Health-Physical Information MOBILITY Primary modes of ambulation.
Walks with personal assistance
Uses a walker
Uses a manual wheelchair - independently
Uses a manual wheelchair - dependent upon another person
Uses an electric wheelchair
Are there specific procedures required when transferring the student?
If "Yes," report the required transferring procedures.
Does the student require assistance when crossing streets?
If "Yes," report the assistance needed.
COMMUNICATION Receptive Communication - Report the primary means through which the student receives information.
Visual inspection of objects
Manual sign language
Colored line drawings
Black and white drawings
Tactile contact with actual objects
Other receptive communication information
Expressive communication - Report the primary means by which the student communicates information.
Points to objects
Uses manual sign language
Makes facial expressions
Looks at objects
Looks at pictures
Points to pictures
Engages in actions that communicate
Uses a facilitator
ASSESSMENT RELATED INFORMATION From Psychological Reports
From Occupational Therapy Reports
From Physical Therapy Reports
From Speech and Language Therapy Reports
From Medical Reports
From Social Worker Reports
From Educational Reports
Behavior Consultant Reports
Two strategies are often used to determine the relative acceptability of the social life of a student who is severely disabled. One is to secure information about the social lives of appropriate nondisabled peers; then to secure similar information about the student; and then to compare the two clusters of information using important quantitative and qualitative dimensions. A second strategy, which is not independent of the first, is to study the social life of a student in substantial detail. Then, using the dreams, quality indicators, best practice standards, hopes and judgments of the student and his/her parents/guardians, teachers and significant others, determine if there are relationships that should be developed, eliminated or enhanced.
Values relevant to the social life of a student who is severely disabled are presented below. Some emanated from analyses of the social lives of nondisabled peers and some were derived from the ideological and educational standards, beliefs and direct experiences of the authors, their colleagues and parents/ guardians. Some are self evident when nondisabled peers are concerned, but must be clearly articulated and pursued vigorously when the social life of student who is severely disabled is being considered. The values presented here are rather general. More specific versions and extensions are contained in subsequent sections.
Factors that are extremely important in the life of a student who is severely disabled may or may not be so in the life of a nondisabled schoolmates. For example, most nondisabled students do not utilize peer tutors. However, they may be wonderful vehicles for building the social relationship range of a student with severe disabilities. Additionally, nondisabled peers may prefer to go to and from school by themselves and to study alone with few, if any, negative effects on their social lives. In contrast, it is extremely important that the students of concern go to and from school with nondisabled peers and experience other positive interactions with them after school and during weekends, holidays, etc. If they do not, their social lives are almost always negatively effected.
If the student experiences a joyful, rich, varied and constructive social life, interventions on the part of professionals are unnecessary. If, however, important social relationships are absent, underdeveloped or should be eliminated or enhanced, it is necessary and appropriate for professionals to assist in the design and implementation of corrective interventions.
The IEP of any student who is severely disabled is unacceptable, if it does not contain components that verify or engender a meaningful array of social relationships with nondisabled schoolmates that are expressed at school and in nonschool environments and during school and nonschool days and times.
In some instances, the student may not interact with sufficient number of nondisabled persons to allow the development of important social relationships. If so, actions that increase the number of nondisabled persons with whom he/she interacts are necessary.
If nondisabled peers do not initiate actions necessary to establish acceptable social relationships or respond positively to the initiatives of the student, adults in authority must act accordingly. Being alone all the time is worse than having someone arrange or facilitate your social opportunities.
A social relationship range should involve a rich variety of nondisabled persons who represent different genders, races, ethnic groups, income levels and other phenomena, if at all feasible.
The social relationships developed or enhanced should be expressed in the same places and during the same days and times they would be expressed if the student was not disabled, whenever reasonable.
Substantial efforts should be devoted to affording the student opportunities to function with one other nondisabled peer, in a small group of from three to seven nondisabled peers, as a member of team and as a spectator.
When the student is young it may be acceptable to focus on one or two kinds of relationships. However, these few should be enhanced and new ones should be developed so that by age 22, a repertoire contains a rich and balanced range that is manifested in many appropriate school and nonschool environments, activities, days and time periods.
School officials and other significant persons in the life of the student have the responsibilities of arranging and verifying that social relationships developed at school are expressed in reasonable ways elsewhere.
Relationships should be maintained and enhanced with minimal obtrusiveness from adults in authority. That is, they should be operative under conditions that are as natural as possible.
Social relationships should be reciprocal, cooperative, respectful and should honor the rights and responsibilities of all parties.
The student has the right to choose the kinds of relationships she/he wants with nondisabled schoolmates; to participate in the selection of the nondisabled peers with whom to establish relationships; to participate in that which is necessary to enhance and maintain them and to make decisions about how they should be changed, if at all. However, it is extremely important for the student to learn that he/she, like all others, may have to sacrifice or compromise to maintain or salvage a relationship.
Social relationships can and should be developed in conjunction with functional, academic, work, play and other skills.
During the school to postschool transition years, approximately ages 19-22, social relationships should be cultivated with the nondisabled persons with whom the student is likely to interact during postschool life.
All relationships should include activities that are chronological age appropriate, safe, healthy, in reasonable accordance with the values presented and preferred by those involved. Any activity that demeans, is harmful, strains the relationship unduly or is objected to strenuously by someone directly involved should be avoided.
The PERSONNEL, INFORMATION-TRAINING, INDIVIDUALIZED ADAPTATIONS, MONEY, and OTHER extraordinary support necessary for reasonable participation in integrated environments, activities and social relationships should be arranged.
If any aspect of an existing relationship is not acceptable, plans designed to improve it should be initiated. However, even if existing relationships are considered, acceptable, components can be expected to change in importance across time. Thus, plans designed to meet likely social relationship requirements of the near future must be continuously operative.
The student should be based in the same school and in the same Regular Education classes in which she/he would be based if not disabled.
IV. Comparing Values to Social Realities
The task now is determine if the realities of the social life of the student are in reasonable accordance with the values presented. In order to do so, informtion about six kinds of social relationships will be gathered and analyzed.
Eating Relationships The development of eating relationships with nondisabled schoolmates is entwined with fiscal, emotional and other costs. The more integrated the eating relationship, the less financially and otherwise demanding it will be for the student, family members, professionals and taxpayers. Having paid adults or family members eat with an individual who is disabled six times per day, forty two times per week, 2184 times per year for life, unless absolutely necessary, is unacceptable.
Values The student should eat in the same environments in which she/he would eat if not disabled.
The student should eat with the persons with whom he/she would eat if not disabled.
The student should have a positive relationship with at least one nondisabled supportive eating companion.
The student should have reasonable opportunities to participate in the same eating related activities in which she/he would participate if not disabled.
Eating periods should be the same lengths they would be if the student was not disabled.
The supervision offered when eating and participating in related activities should be the same as that available to nondisabled companions in similar circumstances, whenever reasonable.
The safety and health of the student should never be risked unduly in favor of eating with nondisabled schoolmates. However, even if specialized eating services are necessary, they can almost always be provided in integrated settings.
School officials are responsible for helping to arrange that the eating relationships with nondisabled peers developed at school are expressed in nonschool environments and during nonschool days and times under conditions that are as natural as possible.
The extraordinary hardships too often associated with eating should be minimized.
Realities On The Current Eating Experiences Chart record the days of the week of concern, the environments and subenvironments in which the student eats during each day, the approximate starting and ending times of each eating period, the approximate amounts of time spent actually consuming food and drink, the eating related activities in which the student typically engages and those with whom she/he typically interacts.