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Developing a Curriculum forMentally Retarded Adults ‐‐ acooperative project between theuniversity and the practitionersRaija Pirttimaa aa Institute for Educational Research, University of Jyväskylä, PO Box 35, SF‐40351 Jyvdskyld, FinlandPublished online: 07 Jul 2006.

To cite this article: Raija Pirttimaa (1996) Developing a Curriculum for Mentally RetardedAdults ‐‐ a cooperative project between the university and the practitioners, ScandinavianJournal of Educational Research, 40:2, 93-102

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Scandinavian Journal of Educational Research, Vol. 40, No. 2, 1996 93

Developing a Curriculum forMentally Retarded Adults—acooperative project between theuniversity and the practitionersRAIJA PIRTTIMAAInstitute for Educational Research, University of Jyväskylä, PO Box 35, SF-40351Jyvdskyld, Finland

ABSTRACT As recently as six years ago, after their compulsory education was over, it was verydifficult for severely and profoundly mentally retarded people in Finland to receive furthereducation. The regional units within the social-services sector financed a four-year project whichwas carried out at the University of Jyvdskyld, during this project an adult-education plan wasproduced, its implementation was monitored and the content of adult education and the trainingof staff was developed. During the experiment the mentally retarded people involved becamemore actively involved in the different activities, and a considerable improvement was observedin their independent daily living skills. Good results were reported in the development ofinteraction and self-esteem, and the educators' consciousness of their work developed during theexperiment. Within a short period of time, good results were attained by means of adulteducation, but educational equality and the realization of integration are still a long way ahead.

BACKGROUND AND STARTING POINTS

Ever since the beginning of the 1970s, special-education curricula have beendeveloped, to a large degree, in close cooperation between the University ofJyväskylä and those involved in special education, that is, primarily special-schoolteachers (Ikonen, 1993). The admission of moderately mentally retarded individualsinto comprehensive schools in 1985 marked the beginning of intensive developmentof a curriculum for severely and profoundly mentally retarded pupils. This curricu-lum was completed in 1987, and, at the same time, the 'Project for the Teaching ofProfoundly Mentally Retarded Individuals' began. This project was assigned thetask of developing the practice and content of teaching, and it was closely linked tothe training of special-education teachers for severely and profoundly mentallyretarded individuals. On termination of the project in 1989, it appeared that severelyand profoundly mentally retarded youths had no curriculum or student places whichthey could have access to after their compulsory education was over. In Sweden(Rosenqvist, 1993, pp. 71-72) mentally retarded students have an extra compulsory

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year at school after the compulsory school years. This is possible also in Finland,but it is not compulsory. One year is also, in many cases, too short a time forlearning. It was also planned that we should have more adult education in Finlandin day-care centres, as they seemed to have in Sweden (Bakk & Grunewald, 1986,p. 60)

Because severely and profoundly mentally retarded students did not have goodadult-education possibilities, the regional units within the social-services sector(organizations responsible for the care of the mentally retarded people) decided tofinance a four-year project called 'The Study of the Teaching of Mentally RetardedAdults'. Its aim was to develop adult education provided in the form of special carein order to make it useful to the education of youths and adults as well. Another goalwas to make it possible for this form of adult education to assume responsibility forthe teaching of severely and profoundly mentally retarded students. The initiation ofthe project was motivated by a very practical need: we wanted to develop activities,and at the same time to monitor them. The starting points of the project were typicalin special education: an accurately denned target group, practical developmentalneeds in a domain where research or developmental work is scarce (cf. Fadjukoff &Pirttimaa, 1991).

GOALS AND ORGANIZATION OF THE PILOT SCHEME

At the time when the project was commenced a rather general blueprint for carryingit out was drawn up. It was the goal, within four years, to devise a curriculum formentally retarded youths and adults who then had no access to education. Inpractice, these persons were most often multiply handicapped, severely and pro-foundly mentally handicapped individuals who had obtained no basic education orwho had quit their studies. The project was financed by 12 Federations of Munici-palities of the 12 Special Welfare Districts, the total number of these federationsbeing 15 in Finland. Consequently, several areas of Finland were covered, from thesparsely populated Lapland to urbanized southern Finland. The initial plan becamemore and more specific as cooperation with the leaders of the pilot groups engagedin the development and as research progressed.

At the beginning of the project, the plan was to proceed by applying principlesof action research. Indeed, several features identical with action research wereidentified, but the project could better be described as development work whichinvolved a piloting and research component for assessing the outcomes of theexperiment. For example, the research and piloting staff did not switch roles duringtheir work, as is typically required in traditional action research. There were 90 pilotgroups and three researchers. Although the local staff did the assessing and testing,that is, 'traditional' research work, the assessments and tests had been selected sothat they immediately facilitated the implementation of individualized adult-edu-cation plans. Thus, data were not collected solely for the purposes of the researchers.The researchers visited the field, and familiarized themselves with different adult-education groups in order to make observations and interviews. Most pilot groupshad only one leader, and, therefore, the 'discussion circles' initially planned for the

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reflective discussion of relevant activities in cooperation with others could not beset up in every pilot group. It is probably due to these facts that the visits to thepilot groups by the researchers (and contact persons) as well as the cooperationbetween the pilot groups were considered inadequate (Kehitysvammaisten aikuistenopetustutkimus. Projektin arviointimuistio, 1993).

However, close cooperation was an explicit aim, and the goal was to stay inconstant touch with all those involved in the experimentation work. Every regionhad a contact person who was responsible for communication between the researchand local piloting staff. The contact persons also constituted a network and were inregular contact with one another at least twice a year. The researchers communi-cated by letter and on the telephone and helped to resolve problems. They alsoaddressed issues important to adult education in information materials (on anaverage six letters per year). The researchers also acted as a clearing-house forinformation on experiences obtained by other pilot groups for all the groups bycorrespondence. One reason for establishing contacts with the groups was the needfor information required for the overall assessment of the impacts of adult education.

Every year, two regional one-day conferences and workshops were held, theparticipants being group leaders and other persons interested in adult education.Furthermore, two nationwide meetings were organized during the period of fouryears. The contact persons and group leaders volunteered to do all this withoutreceiving any remuneration.

During the second year of the implementation of the project, a new project waslaunched at the Continuing Education Centre of the University of Jyvaskyla. Thegoal of this latter project was to train staff responsible for adult education by usingdistance education methods and multimedia methods. In addition, the projectproduced learning material for self-education and for the education of mentallyretarded youths and adults. This sister project provided sound support for the'Study of the Teaching of Mentally Retarded Adults' and won both publicity andrecognition for the education of severely mentally retarded people.

During the first year, the goal of the various contacts was to present the pilotgroup leaders with different ways of implementing adult education and to start adiscussion on the principles which could be adopted as the basis for the educationof the most severely mentally retarded people in Finland. In the same year,individual assessments and tests were made with mentally retarded persons, and acomprehensive survey of the life situation of the mentally retarded youths and adultswas also carried out. In the course of the second year, an interim curriculum(Kehitysvammaisten nuorten ja aikuisten kokeiluopetussuunnitelma, 1991) wasdevised and education for the use of this curriculum provided. The curriculum wascritically reviewed and suggestions for its improvement were made. During the thirdyear, information about, and a critique of the experimentation process and theinterim curriculum were collected, and, finally, the planned project was completedduring the fourth year, as were the final reports on the impacts and implementationof the experiment.

We are dealing here with a straightforward project work. There was one majorgoal, which formed a single mission (to devise a curriculum for severely and

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profoundly mentally retarded youths and adults). The project was also limited interms of time and resources, and an organization designed particularly for thispurpose started carrying out the task. Despite the fact that several issues had beennoted in advance planning, the plan was so general that new challenges, whichhelped specify the original definition of the task, could be accommodated wheneverthis seemed necessary.

The total number of local pilot groups set up was 90, without the researcherstrying to influence this outcome. The number of groups varied in different regions,depending on the interest shown in the challenges provided by the project. Thegroups functioned in different contexts. Almost one half (48%) worked in shelteredworkshops and day-care centres, 23% in mental-retardation institutions, 21% inteaching units (in study groups for youths past the age of compulsory educationorganized by special care, and in connection with special schools for severely andprofoundly mentally retarded children) and 8% in group homes. The leaders of thegroups who were responsible for adult education were instructors, nurses andspecial-education teachers. The students included in the pilot groups were mostlyseverely or profoundly or moderately mentally retarded persons. The average age ofthe youths and adults was 23 years.

The formation of the groups marked the beginning of the experiment. Many ofthe groups had already got together before the project either on a daily basis orseveral times a week. A few groups were established specifically for adult education.As the education proceeded, the first individual evaluations were made (for example,Adaptive Behavioral Scale measuring independent-living skills, or the Pre-VerbalCommunication Schedule). At the same time, the situation in the community wasbrought under discussion. On the basis of various ideas and suggestions presentedin the interim curriculum and information materials, the groups determined theiradult education goals and discussed the organization of their activities. The leadersof the groups were largely responsible for the local pilot study.

NOVA, A PLAN FOR ADULT EDUCATION

Everything Started from the Definition of the Concept 'Curriculum'

At the beginning of the project the first definition of a curriculum was that 'acurriculum provides the nation-wide framework for more specific plans to be devisedin each community'. At the very beginning of the project it was also agreed thatlearning is a lifelong process. In Finland, the teaching of profoundly mentallyretarded children who are subject to compulsory education emphasizes the develop-mental viewpoint, in which the goals of teaching are determined according to thestages of normal development. For adults, a functional approach was chosen: itseemed clear that, as far as adults are concerned, special emphasis should be laidupon 'learning to live'. The idea of a functional curriculum is new in Finland (seeLehtinen, 1993c). A functional curriculum means that a mentally retarded youth oradult is taught things which help him/her participate in activities and situationsavailable in the community (Falvey, 1989). Furthermore, age appropriateness,

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demands from the environment, and the consideration of the mentally retardedperson's own wishes and needs are stressed in setting individual goals. In thefunctional model, our daily life serves as the teaching environment. Functional skillscan be immediately exploited by the person in his/her own environment (Brown etal., 1979; Saloviita, 1993).

In 'The Study of the Teaching of Mentally Retarded Adults' the functionalmodel was readily accepted in the pilot groups, most of which did not function ina 'school-like' environment. In several of the environments of this type, for example,various models for developing discrete skills had been adopted.

Discussion of Basic Values

In conjunction with attempts to define the concept of curriculum, discussion of thevalue concepts on which teaching was based began. The concept of 'normalization'put forward by Bengt Nirje, a Swedish practical philosopher, as early as the 1960scould be incorporated into the concept of a functional curriculum (see Nirje, 1993).In this context normalization is a human right. Severely or profoundly mentallyretarded people have the right to lead the same kind of life as we all have. Forexample, they have the right to study as adults to act in accordance with their age,to live in normal residential areas, to move freely about wherever they want. Theyalso have the right to make choices and decisions regarding their own affairs.

Integration and participation are closely connected with the normalization prin-ciple. In adult education, integration is realized through membership in a com-munity. Human beings become autonomous if they can function as an equalmember of their community. This also provides them with an opportunity ofcontinuous change, growth and personality development. In adult education, inte-gration stands for the processes by means of which an individual becomes a memberof his/her community. Therefore, participation can be regarded as one of theprimary goals of adult education. To participate does not mean that you must actperfectly. It is enough that everyone participates as well as they can and that they aregiven all necessary support to do this. This partial participation also gives a severelymentally retarded person an opportunity to keep growing up and learning as amember of their community (see Ferguson & Baumgart, 1991).

Adulthood was not prominent in the interim curriculum, but its role wasemphasized in the final curriculum. Being an adult is a fact which is often forgottenwhen many severely and profoundly mentally retarded persons are concerned (seeFerguson & Ferguson, 1991). They may not even have access to adulthood, becausemany of them remain dependent on other people for the rest of their lives. Childlikebehaviour is accepted. Yet, the most severely mentally retarded person has the rightto be treated as an adult. Adulthood means reaching 'inner independence' despite thefact that the person might be fully dependent on help from others. By means of adulteducation, self-knowledge and self-esteem are supported and participants are helpedto build an adult identity of their own. Kylen's concept of understanding (Kylen,1985; Roren et al., 1986, pp. 23-26) was chosen to help the practitioners and theresearchers to understand the world of severe and profoundly mentally retarded

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adults. Kylen writes that, although the level of thinking of mentally retarded personmight be at a very early stage, the adult person has more experiences than the child;these experiences ought to be considered when planning activities.

In adult education, as well, interaction was considered to be one of the goals andvalues per se: it permeates all education. Many of the users of the interim curriculumparticularly wanted to raise the issue of the importance of interaction, and this topicwas broadly covered in the final curriculum. The stage of pre-verbal communicationwas also taken into account. Sometimes interaction has to be taught and studied.For some severely handicapped people, the establishment of interaction and therinding of a common means of communication can be among the most importantgoals of adult education.

The values and starting points of adult education were included in the acronymNOVA (normalisaatio or normalization, osallistuminen or participation; vuorovaiku-tus or interaction, aikuisuus or adulthood) (Lehtinen & Pirttimaa, 1993a,b).

NOVA Includes Practical Examples

For the whole period during which NOVA was being developed, those involved inthe experimentation process were requested to provide information on the activitiesthey were carrying out in their groups. For NOVA, a great number of examplesdescribing the implementation of adult education were collected from all threefunctional domains of the plan: (i) living, taking care of personal well-being and theenvironment; (ii) work and daily activities; (iii) leisure time and hobbies.

Furthermore, in NOVA a strategy for planning adult education for differentcommunities is presented. The planning process begins with the analysis of thepurpose of the community. Good educational work is largely based on the awarenessby educators of their basic values, on a conception of what it is to be a human beingand on a view of learning. These factors guide educators in determining the goal oftheir work. In addition, individual assessments of the needs, wishes, personalcharacteristics, life experiences etc. of the person involved in adult education aremade, and the relationship between each person and their environment is reviewed.The assessment leads to the setting of goals and to the planning of activities.

As far as NOVA is concerned, it is not enough that all possible activities arefocused directly upon the educator. According to NOVA, the goals can be reachedin the following three fashions:

(1) The environment can be changed and modified in order to attain a specificgoal.

(2) It is also possible to influence the educational process on a conscious level.Cooperation between different educators can be strengthened. Education yieldsgood results if the educators can agree upon consistent strategies and if all of themcan commit themselves to the achievement of common goals. Attention should alsobe paid to the interactive skills of educators.

(3) By using systematic, structured teaching programmes it is possible to gaingood results also within adult education.

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OVERVIEW OF THE RESULTS

The developmental activities and the experiment also included research whichallowed the nature of the activities and the changes that took place in the work ofpilot groups during the experiments to be monitored. Furthermore, the activities ofthe educational staff and changes which occurred in the lives of the mentallyretarded youths and adults, as well as in their various skills, were examined. Thedata were obtained by gathering authentic planning documents and follow-upmaterial related to education by means of interviews and questionnaires, as well asby administering ready-made tests and assessments. On the basis of the follow-upsand surveys, it can be said that the type of adult education which is founded on aregular and systematic use of the NOVA produced promising results.

In the life situation of the mentally retarded youths and adults, small changesin the direction of participation were identified. These persons became much moreactively involved in the different activities and situations related to their lives.Another result indicated that mentally retarded persons were provided more oftenwith opportunities to leave their immediate environment, residential facilities, activ-ities centres, etc. There were more individuals who could take care of their ownaffairs, such as going shopping and banking without help from others (Lehtinen,1993b).

A considerable improvement was also observed in the independent daily livingskills of mentally retarded persons. The results obtained by using the AB-scale werebetter in the case of those who lived in an integrated community in comparison withinstitution residents. However, the performance of the latter group also improvedduring the project (Lehtinen, 1993a). The educators also reported good results inthe development of interaction; and they stated that the participants' self-esteemrose during the experiment when their communication skills improved, when theeducators could establish contact with the client, and when the mentally retardedperson was treated as an adult (Pirttimaa, 1993). The educators' consciousness oftheir work developed during the experiment, and they adopted a more positiveattitude towards mentally retarded youths and adults (Kaijanaho, 1993). When thesignificance of the project to mentally retarded persons was being assessed, the raterspointed out that, during the project, the educators became more aware of theimportance of their own work, which consolidated their favourable attitude towardshandicapped youths and adults (Kehitysvammaisten aikuisten opetustutkimus.Projektin arviointimuistio, 1993).

Variations were observed in how adult education was carried out in thecommunities. As the project proceeded, the communities became more aware oftheir own policies and they obtained a clear picture of their areas of emphasis andof the best way of making individual plans in their communities. Structured teachingprogrammes were successfully utilized in training activities of daily-living skills andin studying various communication skills (Pirttimaa, 1993). In several groups,environmental alterations focused on changing the daily rhythm, and these alter-ations produced an increase in the participation by persons in determining thecourse of their own lives (Lehtinen, 1993b). One obvious reason for the positive

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results cited above was the fact that, during the project, the groups investedresources in adult education.

DISCUSSION

Towards the end of the 'Study of the Teaching of Mentally Retarded Adults',contact persons who had observed the project from a 'ring-side seat' were requestedto appraise the project. The general appraisal given to the project was 'good'. Theinitial confusion gradually turned into systematic cooperation, which proceededflexibly, and the relationship between the researchers and experimentation staff wasopen and straightforward. Most of those who were asked attributed the initial stateof confusion to at least one of the following factors: First of all, it had not beenclearly determined who ought to be educated in the adult-education groups, wherethese groups should be set up, and who should be made responsible for the work ofthese groups. Initially, nobody had a clear notion of this, which was perfectlyunderstandable. Some experiences of the adult education of the most severelymentally retarded persons were available, but they had not been firmly establishedin practice. Another reason for the disorganized beginning was the fact that therewas a turnover of groups, group leaders, contact persons and even researchers.Thus, in order to ensure some continuity, it is important that the key peopleengaged in the development work remain the same, as far as is possible, for thewhole period of the project. Thirdly, it was pointed out that the initial stage (withalready plenty of problems to be solved) should not be encumbered, for example,with comprehensive questionnaires or assessments because these weigh too heavilyon those engaged in the development work. It was considered to be of the utmostsignificance that feedback should be provided as soon as possible regarding whateverthe pilot groups are asked to do. The data must not be left in the files of theresearchers.

Those involved in the assessment process regarded the adult education planNOVA, which was devised in close cooperation with practitioners and the university,as a positive result. In addition, they attached importance to the fact that, by meansof development work, adult education had gained wide recognition. The trainingprovided for the staff during the project was seen as a highly important factor, whichkept up high job satisfaction and helped the staff change the content of adulteducation. One person involved in assessing the project stated that innovation isimpossible by altering structures and bureaucracy; instead, the content must be theprimary starting point in developing new activities or in improving those already inexistence. According to this person, the research data in 'The Study of the Teachingof Mentally Retarded Adults' had become 'the property of the staff, a tool for theirown work'.

According to the information and assessments obtained in the surveys, there is,on the whole, reason to be satisfied with the results concerning youths and adults.However, many grave problems related to, for example, challenging behaviourstill remained unresolved. Behaviour problems seem to be especially typical ofpeople living in segregated environments. Additional attention should also be paid

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to the daily activities of severely mentally retarded and multiply handicappedpersons.

The project is over, but adult education continues as part of the work of thegroups. Howeyer, it still remains to be seen how the positive experiences providedby the new forms of adult education can be generalized and established outside thepilot groups.

During the project, the special care of people with mental retardation hasundergone one of the major changes in its history in Finland. The regional unitswithin the social-services sector are being dispersed, and the municipalization andprivatization of activities has proceeded rapidly. Where within the new system canadult education be carried out? How can information and know-how be transmittedand conveyed in the new organizational framework? In the course of the project, anew teacher certificate was developed, and the first teachers for people with severemental retardation will soon receive their degrees, but where can these teacherswork? These are just a few of the questions that remain unanswered. There have alsobeen plans for raising the age of compulsory education from 17 to 21 or 23 years.However, all youths and adults in Finland are guaranteed by law the right tosecondary education on termination of their compulsory education. Thus, it mightbe easier to insist that the current law be fully implemented instead of demandinga new law. All these issues call for discussion, research and experimentation in orderfor educational equality to materialize and to also provide handicapped citizens withthe right to full participation.

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