EFFECTS OF PLACEMENT IN AN INTERMEDIATE CARE
FACILITY FOR THE MENTALLY RETARDED
SUSAN ANGENENDT BEDINGER
A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF
THE UNIVERSITY OF FLORIDA
IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE
DEGREE OF DOCTOR OF PHILOSOPHY
UNIVERSITY OF FLORIDA
This work is the culmination of a great deal of effort that would
not have been possible without help and input from many sources, too
numerous to list specifically lest I unwittingly omit names.
My appreciation goes to my family and friends who have provided
support and encouragement throughout the writing process and, more
importantly, throughout the life process leading to this point.
My gratitude must be expressed to the academic instructors, con-
sultants, and colleagues who have contributed so importantly to my
professional growth. My committee members, especially Don Avila,
chairman, and Bob Jester, statistical consultant, have always been
available to listen or to suggest different ways of approaching the
Most importantly, acknowledgement is due the caregivers, families,
therapists, and administrative staff at Sunland who have joined forces
to provide loving and effective care for the residents. And I thank
the residents of Sunland for the innumerable times they have brightened
my days and helped remind me of my true priorities.
The patient assistance of Adele in typing this work is gratefully
acknowledged. My thanks also go to Ross and Ann for making their home
and computer available to me, even at the strangest of times.
TABLE OF CONTENTS
ACKNOWLEDGEMENTS . . . . . . . . ... . ii
ABSTRACT. . . . . . . . . ... . . . . . vi
I INTRODUCTION . . . . . . . . ... . . 1
Background of the Study. . . . . . . . ... 1
Statement of the Problem . . . . . . . . 3
Intermediate Care Facility for the Mentally
Retarded. . . . . . . . . ... ... 4
Sunland ICF/MR. . . . . . . . . . 5
Maladaptive Behaviors . . . . . . . . 7
Behavioral intervention. . . . . . . 8
Medical intervention . . . . . . . 9
Interdisciplinary Team. . . . . . . .. 11
Community Placement . . . . . . . .. 12
Purpose of the Study . . . . . . . ... .14
Expected Results .. . . . . . . .... ..... 14
II REVIEW OF THE LITERATURE . . . . . . . . 16
Definition and Diagnosis of Mental Retardation . . .. 16
History . . . . . . . . . . . 18
Demographic Data Collection . . . . . . 19
Normalization . . . . . . . . . 20
Institutionalization versus Deinstitutionalization. 22
Intermediate Care Facilities . . . . . . . 25
Community Placement versus Institutional Care. . . ... 26
Institution Size . . . . . . .. 28
Pre-Institutional History of Residents. . . .. 33
Length of Deinstitutionalization. . . . . ... 34
Institutional Factors. . . . . . . . 34
Staff-Client Ratio . . . . . . .. 35
Staff Behavior and Attitude . . . . ... 36
Summary . . . . . . . . . . . 38
Success of Community Placement . . . . . .... 39
Problems in Community Placements. ........ 40
Factors Involved in Successful Community Placement. 42
Environmental factors. . . . . . ... 43
Individual factors . . . . . .... .45
III METHODOLOGY. . . . . . . . . ... . ..
Subjects . . . . . . . . . . . . .
Instrumentation . . . . . . . . . .
Intelligence Tests . . . . . . . .
Adaptive Level . . . . . . . . .
Hypotheses . . . . . . . . . . . .
Procedure . . . . . . . . . . . .
Design and Analyses . . . . . . . . . .
Summary . . . . . . . . . . . .
IV RESULTS . . . . . . . . . . . .
Effects of ICF/MR Placement. .
Effects of Handicap Conditions .
Relationships Between Social Age
Variables . . . . .
Summary . . . . . .
. . . . . .
V DISCUSSION . . . . . . . . . . . .
Effects of ICF/MR Placement . .
Initial Differences Between Groups .
Relationships Between Social Age and
Variables . . . . . .
Implications for ICF/MR . . .
Implications for Education . . .
Limitations of the Present Study .
Suggestions for Additional Research.
Conclusion . . . . . . .
. . . . . .
. . . . . .
. . . . . .
. . . . . .
. . . . . .
. . . . . .
. . . . . .
. . . . . .
A CLARIFICATIONS ON VINELAND SOCIAL MATURITY SCALE
SCORINGS . . . . . . . . . . . . .
B CASE STUDIES . . . . . . . . . . . .
C CASE STUDY CONSENT FORM. . . . . . . . . .
D SUMMARY OF ANALYSIS OF VARIANCE FOR MODERATELY RETARDED
SUBJECTS AFTER THREE YEARS IN ICF/MR . . . . . .
E SUMMARY OF ANALYSIS OF VARIANCE FOR SEVERELY RETARDED
SUBJECTS AFTER FOUR YEARS IN ICF/MR. . . . . . .
F SUMMARY OF ANALYSIS OF VARIANCE FOR PROFOUNDLY RETARDED
SUBJECTS AFTER FOUR YEARS IN ICF/MR. . . . . ....
G SUMMARY OF ANALYSIS OF VARIANCE FOR PROFOUNDLY RETARDED
HANDICAPPED ICF/MR SUBJECTS AFTER FOUR YEARS IN ICF/MR. . 142
H ADAPTIVE LEVEL AND ITS RELATIONSHIP TO CHRONOLOGICAL
AGE AND LEVEL OF RETARDATION (IQ) FOR ALL CONTROL
SUBJECTS AND FOR SUBJECTS WHO LIVED IN ICF/MR AT
LEAST ONE YEAR . . . . . . . . . 143
I ADAPTIVE LEVEL AND ITS RELATIONSHIP TO AGE AT INSTI-
TUTIONALIZATION, YEARS LIVED IN NON-ICF/MR, AND AGE
AT ENTRY TO ICF/MR FOR ALL ICF/MR SUBJECTS. . . . ... 144
REFERENCES . . . . . . . ... ... . . . 145
BIOGRAPHICAL SKETCH. . . . . . . . . ... . . 153
Abstract of Dissertation Presented to the Graduate School of
the University of Florida in Partial Fulfillment of the Requirements
for the Degree of Doctor of Philosophy
EFFECTS OF PLACEMENT IN AN INTERMEDIATE CARE
FACILITY FOR THE MENTALLY RETARDED
Susan Angenendt Bedinger
Chairman: Donald L. Avila
Major Department: Foundations of Education
The purpose of this study was to examine the effects of place-
ment in a federally funded Intermediate Care Facility for the Mentally
Retarded (ICF/MR) training program as opposed to placement in a more
traditional care unit at the same institution. Conflicting results
in the literature indicated a need for research on the effects of the
The progress of 158 moderately, severely, and profoundly retarded
subjects living in a state institution was compared with that of 279
control subjects. Profoundly retarded ICF/MR subjects were further
divided by number of major physical handicaps.
Social Age, as measured by the Vineland Social Maturity Scale,
was found to increase significantly for all ICF/MR subjects but for
none of the non-ICF/MR conditions. Progress for moderately and
severely retarded non-ICF/MR subjects was not significant during the
year following an institutional reorganization which attempted to
provide equal services to both ICF/MR and non-ICF/MR units. Implica-
tions of the significant progress made by profoundly retarded control
subjects during this year were questionable. Age at institutionaliza-
tion, number of years lived in the institution before placement into
an ICF/MR unit, and length of time spent in ICF/MR were all found to
have no relation to progress.
Twelve case studies examined individual response to placement in
ICF/MR and some possible reasons for progress or lack thereof.
Subjects in the ICF/MR program made significant gains in Social
Age as opposed to those living in more traditional care units at the
same institution even after improvement of services in the traditional
units. No demographic or diagnostic characteristics were found to be
predictive of success in the ICF/MR program with the possible exception
of the presence of psychosis in addition to a diagnosis of mental
Mental retardation is an age-old tragedy and our reactions to
it and treatment (or lack thereof) have varied greatly throughout the
years. The birth of a retarded child has been viewed alternately as
a punishment from God and as a blessing, and response to the child has
ranged from total neglect and abuse to total acceptance and lack of
any demands or expectations. Current work has established the ability
of retarded persons to learn and develop and now concentrates on
finding the best methods for promoting developmental growth.
Background of the Study
More than six million people in the United States have some
degree of mental retardation. This population ranges from those
known as "six-hour retardates," mildly retarded persons who do poorly
in school but have adequate adaptive and social skills for daily
functioning (Anderson, 1981), to the most profoundly retarded and
handicapped individuals who are passive captives of their environment.
The more severely retarded persons are found mainly in institutional
settings (Eyman & Borthwick, 1980).
For many years, the profoundly retarded were thought to be un-
trainable and so received only minimal custodial attention (Stainback
& Stainback, 1983). Recent interest and legislation have focused on
the adaptive needs and potential of developmentally delayed persons (Turnbull
&Turnbull,1978). Enacting legislation and guaranteeing the rights of
the mentally retarded are only beginning steps, however, and effective
implementation strategies have yet to be definitively outlined. Several
directions are now being explored including intensive training,
improvement of living conditions,and deinstitutionalization of resi-
dents into the community (Gibson & Fields, 1983; Landesman-Dwyer, 1981).
These issues will be discussed in greater detail in Chapter II but the
point for now is that awareness of the historical dehumanization of
the mentally retarded has reached the public forum and options for
correcting past injustices are being explored.
Sunland Center in Gainesville, Florida,I is a state institution
for the mentally retarded. Originally established in 1922 as the
"Florida Farm Colony for Epileptic and Feeble-Minded," it is today an
attractive collection of brick cottages, support departments, and
hospital. The majority of cottages are unlocked so that residents
can go inside and out at will and those who are capable travel around
the campus by themselves when going to school, work, bank, or canteen.
Prevocational training departments in each unit prepare residents for
paid work positions in the institution's sheltered work shops.
There were initially six widely dispersed Sunland Centers located
throughout Florida. Two changed their names and two closed due to
physical plant inadequacies so that there are now only two "Sunland
Centers" in Florida. All references to Sunland in this study refer
to the institution located in Gainesville.
The majority of clients presently residing at Sunland fall into
the severe and profound levels of retardation since most moderately
and mildly retarded residents have been moved to community placements.
A significant number of the residents remaining in the institution have
some degree of visual, auditory, and/or motor deficit.
Statement of the Problem
Despite substantial individual differences within the mentally
retarded population, there has been a marked tendency in the literature
to consider limited numbers of variables when studying or devising
treatment plans. Frequently, the only designated independent variable
has been the subject's IQ level (Finn, 1983; Sandler & Thurman, 1981).
Response to training and environment has, however, been shown to be
dependent on other factors such as functioning level prior to treatment
(Kleinberg & Galligan, 1983; Landesman-Dwyer, 1981) and size of insti-
tution (Baroff, 1980). Further, the quality of attention given to
residents is influenced by staff perception of the resident's attrac-
tiveness and likability in addition to mental level (Dailey et al.,
1974). Few studies have measured intervention effects using an objec-
tive scale of adaptive development (Lemanowicz et al., 1980). Measures
such as decreased verbal dependency and imitativeness, and increased
behavioral variability as defined by motivation on a circular maze test(Balla,
Butterfield, &Zigler, 1974), are interesting but not readily general-
izable to treatment. Additionally, most studies have used a cross-
sectional rather than longitudinal design so that effects have not
been examined over time (Lemanowicz et al., 1980).
The present study examined six years of longitudinal data,
looked at several variables such as number of physical handicaps,
age at institutionalization, and time spent in traditional custodial
care before placement in an intensive training program, and made
specific treatment recommendations.
Intermediate Care Facility for the Mentally Retarded
A federally funded program, Intermediate Care Facility for the
Mentally Retarded (ICF/MR), has been implemented nationwide in order
to provide optimum living and training conditions for mentally retarded
persons. Funded under Title XIX of the Social Security Act (Medicaid),
ICF/MR units function under strict guidelines and accountability
standards. The program is designed to provide a stimulating training
environment for large numbers of institutionalized residents and to
prepare them for placement in the community. The ICF/MR program units
provide intensive and individualized training to residents in all areas
of need including self-care and daily living, academic, social, motor,
speech, and job-related skills, as well as any medical, occupational,
or physical therapy services. The following conditions are necessary
to qualify for ICF/MR placement:
any person who has reached his 18th birthday and has an IQ
of 49 or less or who has an IQ of 50-69 with an additional
disability such as blindness, deafness, etc. Any person
under 18 years of age with an IQ of 59 or less or who has
an IQ of 60-69 with an additional disability. These persons
must have an income no greater than $505.00 per month and
total assets no greater than $1,500. (State of Florida
pamphlet ICF/MR? Department of Dealth and Rehabilitative
Services [no date or publication number given])
Twenty-eight of the fifty cottages at Sunland Center are licensed
ICF/MR residences. The first unit (Facility I) of 120 residents re-
ceived its ICF/MR license in 1977 and new units were added as funds
became available to meet physical plant renovation requirements.
Facility II came on line in 1979; Facility III in 1980; Facility IV
in 1981; and one-half of Facility V in 1982. There are no plans at
present for further expansion of the program at Sunland.
The ICF/MR program is supported by federal (56%) and state (44%)
funds. The maximum payment per client per month is $1,064.00, depending
on the particular needs of the client. Guidelines and accountability
are strict. For example, each client must have a minimum of eighty
square feet of living area if in a private room, or sixty square feet
if living in a room of two to four persons. Families are encouraged
to visit at any time and a resident is permitted to spend up to thirty
nights at home per year. Medical care is provided, and each client
must have a medical, pharmaceutical, and dietary review every sixty
days. A direct care staff to client ratio of one to two is required
for ambulatory and one to one for non-ambulatory residents. Addi-
tionally, a cottage manager and training staff are assigned to each
cottage. Clients may not have more than three consecutive hours of
unstructured time any time of the day, any day of the week. Standards
are monitored through biannual surveys conducted by the Office of
Licensure and Certification (OLC) and Medicaid, as well as by an
in-house Quality Assurance Team in addition to monthly facility self-
Each Sunland unit of 120 clients is supported by a profes-
sional staff of two psychologists, social workers, speech therapists,
occupational therapists, vocational trainers, and one dietician. All
clients are evaluated yearly and their progress over the past year
assessed. Training goals for each client's coming year are developed
at his or her annual habilitation plan meeting. Progress in all train-
ing programs is reviewed at least quarterly and often monthly by an
Interdisciplinary Team (IDT) which consists of cottage staff, all
therapists who provide services to each client, and the social worker,
nurse, and program coordinator (Qualified Mental Retardation Profes-
Prior to November 1982 Sunland non-ICF/MR cottages had a high
staff-client ratio and provided traditional custodial care. Two or
three direct care staff each shift performed all housekeeping and
caretaking activities for one cottage of twenty to thirty residents,
and one or two training aides were supervised by a behavioral program
specialist working out of a central programming department. In
November of 1982 the Center underwent a unitization process during
which all therapy departments were dissolved and placed under the
authority of the head administrator in each unit. All facilities were
assigned the same number of direct care, training, and therapy staff
except that non-ICF/MR cottages received no housekeepers. All
facilities were then charged with meeting ICF/MR standards so that
all clients at Sunland would receive identical training and care
whether they lived in ICF/MR or in non-ICF/MR units.
In practice, however, this attractive goal has not been met and
there remains a training/care differential between the two kinds of
living units. Non-ICF/MR cottages remain more crowded than their
ICF/MR counterparts and ICF/MR staff vacancies at times take priority
because licensing and federal funding are jeopardized if full services
are not consistently provided to ICF/MR residents. The absence of
housekeeping staff in non-ICF/MR requires that custodial (direct care)
staff perform housekeeping chores and considerably lessens the amount
of time they can devote to training clients, work routinely performed
by the direct care staff in ICF/MR. The assignment of permanent nursing
staff to ICF/MR cottages enables clients to receive training in
health-care needs such as proper handwashing and water fountain skills
for hepatitis carriers, disinfection of bathing mats for those with
foot fungus difficulties, adequate hydration for those taking medica-
tions, and first aid programs. Unitization narrowed the services gap
between the two halves of Sunland but has not negated it despite
vigorous efforts to standardize the entire Center.
Many clients at Sunland exhibit a wide range of inappropriate
behaviors ranging from mild, annoying behaviors to life-threatening
self-abuse and aggression. Control of client behaviors is accomplished
through a combination of behavioral intervention and administration of
psychotropic (mind-affecting) medications.
Behavioral intervention is the primary approach at Sunland when
attempting to bring problematic behaviors under control. Procedures
must adhere to strict guidelines developed by the Florida Department of
Health and Rehabilitative Services (HRS). Any procedure which intrudes
into client rights must be approved and monitored by a state-certified
(Level III) committee. Any approved aversive (unpleasant) procedure
must be paired with a heavy reinforcement schedule (pleasant con-
sequences for appropriate behavior). Unpleasant physical interventions
such as spanking or electric shock are never permitted.
Behavioral techniques commonly employed at Sunland include
1. Positive Reinforcement: Response-contingent presentation of a
stimulus which maintains or increases the frequency of the response;
2. Differential Reinforcement: Reinforcement for a response under
one stimulus condition but not under other stimulus conditions, e.g.,
a specific behavior is encouraged in one situation but the same
behavior emitted in an inappropriate situation is not reinforced;
3. Social Disapproval: Response-contingent use of certain statements
and facial expressions which results in a decrease in the inappro-
priate behavior (verbal abuse and humiliation are not permitted);
a. Exclusion Time-Out I: The prompt and temporary removal of a
client from an activity contingent upon the occurrence of specified
b. Exclusion Time-Out II: The prompt and temporary removal of a
client from an activity and placement behind a screen or other
visual obstruction after exhibition of specified inappropriate
c. Seclusion Time-Out: Temporary confinement in a room contingent
upon the occurrence of a specified maladaptive behavior; the
opportunity to acquire or contact reinforcing stimuli is suspended.
5. Response Cost: Removal, postponement, or omission of the presenta-
tion of a reinforcer after a targeted maladaptive behavior has
6. Extinction: The discontinuation of identified reinforcing con-
sequences results in a decrease in the rate, force, duration, or other
characteristics of the targeted maladaptive behavior.
Once an intervention strategy is developed and approval obtained
from the Level III committee, all staff involved in its implementation
are trained and appropriate documentation set up. Results are
regularly monitored and changes in the program made as the targeted
behavior either responds to the intervention or fails to show
As stated earlier, behavioral intervention is the treatment of
choice when dealing with clients who exhibit problematic behaviors.
At times, though, inadequate response to consequences or the severity
of a target behavior warrants prescription of psychotropic (mind-
affecting) medications in addition to programming. Medications
commonly prescribed at Sunland include antipsychotics (also called
neuroleptics and major tranquilizers) such as Thorazine, Mellaril,
Prolixin, Stelazine, Navane, Haldol; minor tranquilizers such as
Librium; the anti-manic medication Lithium Carbonate; and anti-
depressants such as Elavil, Sinequan, Xanax, and Tofranil (DeGennaro
et al., 1981; Harris, 1981a,b,c,d).
Major tranquilizers are used to treat serious symptoms such as
agitation and rage, overreaction to sensory stimuli, combativeness and
hostility, hallucinations, delusions, and paranoia. They are admin-
istered orally at Sunland, and residues remain in the fatty tissues
for two to three months after discontinuation.
Possible side effects of the major tranquilizers include sedation,
dizziness, diminished sex drive, difficulty ejaculating, weight gain,
a lowered seizure threshold with concurrent increased risk of seizure
activity, and anticholinergic effects such as nasal congestion, dry
mouth, blurred near vision, constipation, and urinary retention. These
side effects often dissipate within days or weeks of starting the
medication. Of more concern is tardive dyskinesia, a neurological
condition which may occur after long-term use of antipsychotic medica-
tions. This often irreversible condition is manifested by tremors and
tongue thrusting. The disorder is usually masked by the drug and is
therefore often not discovered until the medication has been discon-
Minor tranquilizers such as Librium are typically used to help a
client adjust to a particularly stressful situation and are prescribed
on a short-term basis. Lithium Carbonate has a calming effect on some
agitated or hyperactive clients. Antidepressants are used to treat
long-term symptoms of depression.
Clients receiving antipsychotic medications are reviewed regularly
by the physician, psychiatrist, and psychologist, and attempts are
constantly made to reduce or discontinue dosages. As of May 1984, 29%
of the client population at Sunland (257 of 886 residents) received
psychotropic medications: 187 were prescribed one drug; sixty-seven received
two kinds of drugs; and three clients received three separate medica-
tions (Bates, 1984). Less than one year later (Bates, 1985), the
usage of major psychotropic medications had decreased to 21.4% of the
total population of 860 clients and the use of minor agents, especially
Xanax, had increased. Interestingly, fewer ICF/MR clients required
psychotropics in 1985 than did residents of non-ICF/MR cottages. This
finding agrees with the results of a nursing study conducted at Sunland
(Steadham, 1983) which found that minor psychotropic agents are more
often prescribed for ICF/MR clients and that the major psychotropics
are more often prescribed for non-ICF/MR residents. Steadham also
found that injuries sustained by clients in ICF/MR require significantly
less medical intervention (are less serious) than those which occur in
non-ICF/MR units. She suggests that differences may be due to the
greater amount of programming and living space provided by ICF/MR.
Decisions about client treatment are made by unit Interdisciplinary
Teams (IDT) composed of a chairperson (QMRP), psychologist, social
worker, nurse, cottage manager and staff, and therapists. These teams
meet yearly to formulate each client's Habilitation Plan (Hab Plan),
which is an evaluation of the client's progress during the preceding
year and establishment of formal training goals for the coming year.
This same team then meets monthly to discuss each client's progress
toward all of the goals established in the Hab Plan. At these meetings
the different therapists and trainers are able to share any concerns
they may have about the client's performance and health, and suggest
changes in programming so that ICF/MR guidelines requiring client
progress are met.
At the time of each client's Hab Plan the IDT must justify con-
tinued placement of that client in ICF/MR and must also project his or
her best probable placement in three to five years. Many of the clients
in the ICF/MR program are felt to benefit from their current living
arrangement and so their recommended placement remains ICF/MR. Some
clients progress to the point where community living is indicated and
so Sunland ICF/MR placement is recommended for them only until an
appropriate community setting becomes available. In reality, however,
clients frequently remain at Sunland for several years after being
recommended for community placement because of the shortage of outside
Several placement options are available in Florida for mentally
1. Community ICF/MR: Operates under the same training guidelines
and accountability standards as Sunland ICF/MR but is restricted
to sixty clients and provides a noninstitutional atmosphere;
2. Group Home: Serves four to sixteen clients in a family type situa-
tion and allows maximum integration into normal neighborhood activities.
Provides some specialized care and/or training based on needs of
residents and classification of the home;
3. Foster Home: Serves one to three clients and provides supportive
family atmosphere and specialized care and/or training based on needs
of residents and classification of the home.
The above types of placement are alternatives to the traditional
institutional placement for the mentally retarded and ideally provide
a less restrictive environment. Their strengths and weaknesses will be
discussed in the next chapter. Community ICF/MR facilities operate
under the same standards as Sunland ICF/MR but often provide contracted
therapy services rather than maintaining full-time professional staff.
Group and foster homes do not fall under ICF/MR guidelines and offer
more traditional custodial services. Residents of these homes often
spend much of their day at a sheltered work shop.
The ICF/MR program imposes firm structure and expectations on its
residents. Individualized treatment plans developed for all clients
help them achieve the highest level of adaptive and intellectual func-
tioning of which they are capable. The ICF/MR program has upgraded the
traditional institutional model which has focused only on residents'
basic health and care. Current practice at Sunland attempts to provide
care commensurate with ICF/MR standards in both its licensed and
unlicensed units. Emphasis is placed on training and eventual move-
ment of residents into less restrictive community placements.
Purpose of the Study
The purpose of this study was to investigate whether persons
living in a state institution for the mentally retarded show greater
adaptive development when living in a federally funded ICF/MR training
program than in traditional care units at the same center.
A great deal of effort and expense are required to run an ICF/MR
facility and maintain accountability, and the little research that has
been done on the effectiveness of the ICF/MR program has shown con-
flicting results. Both positive (Bedinger & Miles, 1982; Ellison,
1983; Witt, 1981) and negative findings (Bible & Sneed, 1976; Repp &
Barton, 1980) have been reported. The negative findings suggested
weaknesses in program implementation rather than flaws in the actual
program design. Relatively few studies have examined resident growth
by adaptive level and those that have did not look at repeated measures
across time (Lemanowicz et al., 1980).
The present study attempted to systematically explore the effects
of the ICF/MR program at Sunland by looking at large numbers of sub-
jects, several variables, and repeated measurements over several years.
Subjective observation and impressions of the ICF/MR program have
suggested that the quality of residents' lives has indeed improved,
but continued investment of effort and expense requires systematic
study and empirical evidence.
Subjects living in Sunland ICF/MR training units should exhibit
greater adaptive level gains as measured by an instrument of
developmental growth (the Vineland Social Maturity Scale) than resi-
dents of more traditional living units. Among profoundly retarded
clients, those with fewer major physical handicaps can be expected to
show higher gain scores than those with two or more handicaps. Non-
ICF/MR subjects should show more progress during the year following
unitization than during the period prior to it due to improved staffing
and programming services. Among ICF/MR clients, a relationship can be
expected between adaptive growth and age at institutionalization, years
lived in the traditional institutional atmosphere, and years spent in
the ICF/MR program.
The review of the literature which follows will examine the
history of treatment of the mentally retarded. Current intervention
strategies and probable factors which influence their effectiveness
will be discussed.
REVIEW OF THE LITERATURE
A great deal of research has been conducted on the etiology and
treatment of mental retardation. Chapter II examines the literature
related to this study beginning with a review of the historical treat-
ment of the mentally retarded. The effects of variables such as
institution size, resident's pre-institutional history, length of
institutionalization, staff-client ratio, and staff behavior are
examined. Finally, the trend toward moving the retarded into the
community is discussed as well as several factors which may influence
the success of such placements.
Definition and Diagnosis of Mental Retardation
The ability to function in one's environment is dependent on both
intellectual and adaptive levels. This interaction is reflected in the
American Association of Mental Deficiency (AAMD) definition of mental
retardation: "Mental retardation refers to significantly subaverage
general intellectual functioning existing concurrently with deficits
in adaptive behavior, and manifested in the developmental period"
(Grossman, 1977, p. 5).
To be classified as mentally retarded, therefore, an individual
must score two or more standard deviations below the mean (in the
lower 2% of the entire population) on standardized intelligence tests,
exhibit adaptive behavior which "will fail to meet the standards of
personal independence and social responsibility expected of persons of
similar age and cultural background," and manifest the condition before
age nineteen (Anderson, 1981, p. 715).
While formulation of this definition ended much of the guesswork
previously involved in the diagnosis of retardation, classification
and labeling of an individual as mentally retarded remain a less than
Classification of persons as mentally retarded, although not pre-
cise, does serve the purpose of permitting service delivery to a
defined population. There is a positive correlation between agreement
on the operationalized definition of a special education population and
the availability of services for that particular population (Sabatino,
1981). In other words, when there is general agreement on a need,
i.e., retardation, that need is more likely to be addressed.
Levels of retardation are defined as follows (Grossman, 1977):
1. Mild: This is a term used to describe the degree of mental retarda-
tion present when intelligence testing scores range 2-3 standard devia-
tions below the norm (52-67 on the Stanford-Binet and 55-69 on the
Wechsler scales); many educable retarded individuals function at this
level; such children usually can master basic academic skills while adults
at this level may maintain themselves independently or semi-independently
in the community; they are fixated at Piaget's concrete operations stage.
2. Moderate: IQ scores range 3-4 standard deviations below the norm
(36-51 on Stanford-Binet and 40-54 on Wechsler); many trainable
individuals function at this level; such persons usually can learn
self-help, communication, social and simple occupational skills but
only limited academic or vocational skills; they are fixated at Piaget's
pre-operational intuitive stage.
3. Severe: IQ scores range 4-5 standard deviations below the norm
(20-35 on Stanford-Binet and 25-39 on Wechsler); such persons require
continuing and close supervision but may perform self-help and simple
work tasks under supervision, sometimes called dependent retarded; they
are fixated at Piaget's (upper level) sensorimotor stage.
4. Profound: IQ scores range more than 5 standard deviations below
the norm (19 and below on Stanford-Binet and 24 and below on Wechsler);
such persons require continuing and close supervision but some may be
able to perform simple self-help tasks; profoundly retarded persons
often have other handicaps and require total life support systems for
maintenance; they are fixated at Piaget's (lower level) sensorimotor
Thirteenth century England distinguished between the classes of
"born fool" and "lunatic" (Anderson, 1981). In the nineteenth century,
these same two classes of retarded were known as "idiots" and
"imbeciles." Probably the first written definition of mental
retardation is credited to Esquirol in 1845:
idiocy . a condition in which the intellectual faculties
are never manifested, or have never been developed suffi-
ciently to enable the idiot to acquire such amount of
knowledge as persons of his own age and placed in similar
circumstances with himself are capable of receiving.
(Anderson, 1981, p. 716)
While an admirable attempt, this definition classified people as
retarded if they had any one of a wide range of handicaps including
epilepsy, emotional disturbances, and deafness.
The Idiots Act of 1886 (Anderson, 1981) discriminated between
institutionalized "idiots" and "imbeciles." Labels such as Idiot,
Imbecile, and Moron persisted into the 1960's. Value labels such as
these may have contributed to the poor care generally available as well
as being a product of the philosophy that allowed such abysmal care.
In the nineteenth century, Itard worked with the "wild boy of Aveyron"
and was able to improve his condition somewhat, in spite of the pre-
vailing wisdom that idiocy was an incurable and chronic disease. In
1905 Binet and Simon developed the first standardized method of con-
sistent classification so that educable retarded children could
receive special training. Community-based services came into existence
in the mid-1950's and John F. Kennedy established the President's
Committee on Mental Retardation in the early 1960's. Section 504 of
the Rehabilitation-Act of 1973 and P.L. 94-142, the Education of All
Handicapped Children Act of 1975, mandate a free and appropriate educa-
tion in the least restrictive program for all handicapped children
(Turnbull & Turnbull, 1978).
Demographic Data Collection
Numerous surveys have collected information on the incidence and
characteristics of the retarded population in this country. Methodology
has been varied and the data obtained have often been unreliable,
limiting the information base available for policy decisions.
The first demographic data gathered on the population of mentally
retarded persons in the United States were drawn from the census of
1850 (Lakin et al., 1982). Efforts centered on counting the number of
"idiotic" and "feeble-minded" persons, as well as other "defective,
dependent, and delinquent classes." Census methodology was poor at
best, but it did signal some interest on the part of the federal govern-
ment in an important segment of its population. Initial surveys
attempted to count persons in the community as well as in institutions
but the data obtained were so unreliable that surveys after 1902 were
restricted to institutions. From 1926 to 1932, authorization was
made for data collection on "inmates in penal institutions and of
institutions for the care of the mentally diseased and of feeble-minded
and epileptics." Various government agencies have been assigned the
task over the years and the labels have changed from "moron," "imbecile,"
and "idiot" to "mild," "moderate," and "severe-profound." Data col-
lection continues and the interest of the federal government in the
developmentally delayed population has waxed and waned depending on
the political bent of the administration in power and the state of
the national economy.
Emphasis on deinstitutionalization and normalization as well as
an overall decrease in numbers of school age children has resulted
in greatly diminishing numbers of people living in institutions for
the mentally retarded (Lakin et al., 1982). Normalization philosophy
was first formally addressed in the 1959 Danish Mental Retardation
Act (MacEachron, 1983) which sought "to create an existence for the
mentally retarded as close to normal living conditions as possible"
(p. 2). The United States has adopted this approach and made it the
primary goal of the Joint Commission on Accreditation of Hospitals
(JCAH): "The facility shall accept and implement the principle of
normalization, defined as the use of means that are as culturally
normative as possible to elicit and maintain behavior that is as cul-
turally normative as possible, taking into account local and subcul-
tural differences" (p. 3). As MacEachron points out, the expectation
of the Americans was that normalized behavior would be a direct result
of placing mentally retarded persons into a normalized environment.
Exactly what constitutes a normalized environment has not been
determined, however, and Lakin et al. (1982) report that the number
of readmissions to public residential facilities has exceeded the
number of first admissions since 1978.
Care of the mentally retarded has become big business. The cost
of maintaining a public institution has risen dramatically since 1970.
According to Lakin et al. (1982), the mean "real cost" (cost converted
to 1967 dollars) of institutional care increased from approximately
$4,000 per resident per year in 1970 to over $10,000 in 1980. Reasons
for the increase include both overall improvements in the quality of
care given as well as the need for more intensive care by the
severely mentally, behaviorally, or medically handicapped individuals
still remaining in the institutions.
Institutionalization versus Deinstitutionalization
To institutionalize or not to institutionalize? This is a timely
issue and an important one, one which involves hope, guilt, money, and
some very strong feelings: "A long time ago, someone once created a
now-famous motto for an institution for the mentally retarded,
'Happiness First, All Else Will Follow' . an accurate motto for
today might be, 'Business First, and What Else Is There?'" (Blatt,
1981, p. xiii).
The prevailing opinion until recently has been to recommend
institutionalization as soon as a child is diagnosed as retarded, often
on the first day after birth for those with easily recognizable symptoms
such as Down's Syndrome. The rationale has been that an abnormal child
living at home will have a detrimental effect on any siblings and quite
possibly destroy the family.
Additionally, it has been argued that a large, centralized insti-
tution can provide a greater variety and quality of services for the
residents than can a small home. Large institutions, however, too
often become mere "warehouses" for the unfortunate people living there.
Jordan (1985) cited Jerry Rivers' (Geraldo Rivera of ABC's popular news-
magazine show, "20/20") daring 1972 expose which graphically illustrated
this type of "care." He and his crew strapped on cameras and ran through
the wards at Willowbrook State School in New York (now known as the
Staten Island Developmental Center). The resulting film showed what was
truly a snakepit: "conditions more fitting for a concentration camp than
a hospital. Images of helpless children, ostensibly in New York's
benevolent care, but in fact completely neglected, wallowing in filth
and ravaged by one of any number of diseases" (Jordan, 1985, p. 70).
Speaking from personal experience, there is an unmistakable and un-
forgettable stench that one finds in such a ward, a combination of
drool, urine, and feces; and a sound of misery and total isolation.
Ward attendants in such places are often caring people but usually
underpaid, overworked, and therefore relatively powerless to effect
any changes in such an environment.
Duly shocked by such living conditions, public opinion swung to
the extreme in the 1960's (Baroff, 1980) and cried for "normalization,"
declaring that all institutions are terrible and inhumane places and
that the only good placement is in the community in a normalized
environment, where "mentally retarded persons should share the cul-
tural patterns and have the advantages offered to others" (Tjosvold &
Tjosvold, 1983, p. 28). The case of the Pennsylvania Association for
Retarded Children (PARC v. Commonwealth of Pennsylvania, 1971) estab-
lished the rights of mentally retarded children to equal educational
It is the Commonwealth's obligation to place each men-
tally retarded child in a free, public program of education
and training appropriate to the child's capacity . .
placement in a regular public school class is preferable
to placement in . any other type of program of educa-
tion and training. (Meyen, 1978, p. 89)
The battle between pro- and anti-institutionalization proponents
rages, a battle with client welfare, parental emotions, and cost as
the elements. The "Community and Family Living Amendments of 1983"
would "phase out, over a 10 year period, all residential facilities
for the mentally retarded (institutions and other ICF/MR nursing
homes) of 25 residents or more throughout . the United States.
Medicaid (Title 19) funding and residents would be transferred to
community facilities of 15 residents or less" (Sharp & Polson, 1984,
p. 1). This legislation was initiated in 1982 by the National Associa-
tion for Retarded Citizens' resolution that "all people regardless of
the severity of their disabilities, are entitled to community living"
(Sharp & Polson, 1984, p. 2). Such strong anti-institution senti-
ment is not uncommon, as the following piece by Blatt (1981) illustrates:
In the special world of institutions,
One learns the rules only by breaking them,
And is happy if he's not depressed,
With full control when not unhinged,
For he's alive just because he's not dead,
But dead while he lives. (p. 99)
Florida succeeded in reducing the population in its six state
retardation institutions by 47% from 1970 to 1981, with a resultant
census of 3,356 residents (AFSCME, 1984). Deinstitutionalization has
not succeeded as well as it might, however, and client distress, abuse,
and death have resulted. Some clients have been unwittingly moved to
residences of questionable quality. One nursing home chain is under
investigation in at least five states and allegedly has ties with
organized crime. Some homes have been closed because of abuse to
the residents, such as the Jesus Loves You Home for Boys (AFSCME, 1984).
Other residences have been established with the best of intentions but
staffed by people with little or no retardation experience and un-
equipped to address specialized health and behavioral needs. Community
placements are showing an improvement in quality as the state works
through these problems. It is clear, though, that a very real danger
exists when deinstitutionalization becomes a goal to be achieved at
Intermediate Care Facilities
The ICF/MR program attempts to provide a healthy, growth-oriented
environment within the institutional setting. Witt (1981) studied
clients in an ICF/MR facility and found significant increases in
adaptive level scores approximately ten months after placement, especi-
ally in the areas of self-help, socialization (development of peer
interaction), and occupation (manipulation of objects and self-initia-
tion of play activities). Bedinger and Miles (1982) found similar
results in a pilot study which compared ICF/MR clients in two facili-
ties at Sunland with clients living in non-ICF/MR cottages at the same
institution. Ellison (1983) found significant gains but an erratic
pattern of growth when thirty-two profoundly retarded women were moved
from a custodial to an ICF/MR unit.
Bible and Sneed (1976) question the value of ICF/MR. They observed
training in a facility before and after a pre-announced accreditation
survey and found an average of only 29.9% and 32.5% of scheduled
training sessions actually conducted on two wards during non-survey
conditions. During the survey, however, 85.5% and 84.5% of training
sessions were run as scheduled. Bible and Sneed suggest that surveys
should be conducted randomly and not announced, and wonder whether
ICF/MR is a cost-effective program or merely a way of providing better
custodial care for clients. Similar findings were reported by Repp
and Barton (1980).
Conroy and Bradley (1981) found that "factors that appear to be
related to client development within the institution are the amount of
day program, the degree of individualized treatment (as opposed to
regimentation in groups) and the number of medications given daily
(the more medication, the less growth). Whether or not a cottage is
ICF/MR certified is not related to client development" (p. 3).
It is apparent that the ICF/MR program is subject to the same
caveat as deinstitutionalization: Better physical plant and budget
do not necessarily insure better resident care and training. As with
any approach to treating the mentally retarded, both positive and
negative results have been found. Conflicting findings and a paucity
of literature indicate a need for further review of the ICF/MR
Community Placement versus Institutional Care
Results of research on the desirability of community placement
have often been contradictory and offer evidence to support both sides
of the issue. For instance, Balla et al. (1974) reviewed studies of
institutionalized children which found decrements in language and
ability to abstract, conceptualize emotional continue, discriminate or
form a learning set. Other studies reviewed by them, however, reported
increases in problem solving autonomy and IQ as well as a normal
developmental sequence of psychological growth, although at less than
one-half that which would be expected based on initial IQ scores.
The Pennhurst decision (Haldernan v. Pennhurst State School and
Hospital et al., 1978) declared that "mentally retarded persons residing
in Pennhurst, a state-operated facility in Spring City, Pennsylvania,
had a right to receive services in the least restrictive setting appro-
priate to their needs, and that these rights had been abridged by their
being institutionalized" (Crunk, 1982, p. 1). The Federal Court claimed
that clients institutionalized at Pennhurst had regressed. Follow-up of
thirty-one mainly severely and profoundly retarded Pennhurst clients
moved into the community after the court order suggested that their
independent functioning skills had shown considerable improvement al-
though causal factors could not be isolated (Conroy et al., 1980).
Conroy and Bradley (1981) summarized five-year longitudinal
follow-up data for clients still remaining at Pennhurst after the
deinstitutionalization order and for those who had been moved to the
community. Rather than regressing, institutionalized clients actually
gained a "very slight amount" in self-care skills.
What becomes evident is that the question of community versus
institutional placement is not a black and white issue as so many would
choose to believe. The assumption that institutions for the retarded
are homogeneous environments and that the needs of all mentally
retarded persons are the same is erroneous. Evidence, as well as
common sense, indicates that not every institution is the same, nor
is each community placement, nor each client or staff person.
Eyman and Borthwick (1980) found that residents of institutions
are generally more severely retarded and exhibit more problematic
behaviors than do residents in community placements. As a result of
selective admission and release policies, institutional populations
are skewed toward the lower level of functioning. To say that com-
munity placement is necessarily the best placement for all mentally
retarded persons is to make the assumption that such facilities are
equipped with the physical plant and staff to handle such a problematic
population. These assumptions have not been met, nor are many
community facilities willing to accept profoundly retarded clients
or those who have recurrent behavior problems.
Factors such as institution size, pre-institutional history of
clients, staff-client ratio, and staff attitudes affect resident
adjustment and development in any placement. These variables will
be examined to see how each relates to the question of optimal place-
ment for the developmentally delayed.
Are large institutions depersonalizing or do they provide a wider
range of services than are available in the community? The assumption
has been that only a small community residence can offer an acceptable
and humane quality of life. The courts have ruled that mentally re-
tarded persons have "the right to the least restrictive conditions
necessary" (Wyatt v. Stickney et al., 1972) and the right to live in
the "least restrictive setting appropriate to their needs, and that
these rights had been abridged by their being institutionalized" (W.A.
Crunk, communication about Broderick decision, February 9, 1982).
Yet as recently as 1975, Edgerton found that most of the "board
and care" facilities (group homes) he studied in California were "closed,
ghetto-like places" which lacked most services and where "the residents
. . are given to understand, in no uncertain terms, that they can
hope for nothing different in the future. . For most mentally re-
tarded people in this system . the little institutions where they
now reside appear to be no better than the large ones from which they
came, and some are manifestly worse" (pp. 130-131). As cited in Sandler
and Thurman (1981), Butler and Bjaanes described many of the community
facilities they studied as being "socially isolated total institutions
within the community" (p. 392). Smaller is not necessarily better and
in fact can be much worse (O'Connor, 1976).
A "collaboration" rather than "control" approach should "encourage
social support, mutual assistance, and coordination of efforts that
strengthen social skills and learning of most cognitive skills" for
residents (Tjosvold & Tjosvold, 1983, p. 36). Institutions, however,
stress obedience, conformity to routine, and a lack of conflict with
peers (Dentler & Mackler, 1961). Instead of fostering social and
emotional development, institutional social deprivation encourages
residents to be dependent and suspicious (Zigler, 1978), to deceive
and manipulate staff members (Braginsky & Braginsky, 1971), and to
feel helpless (DeVellis, 1977; Veit et al., 1976).
McCormick et al. (1975) studied institutions in this country as
well as in Scandinavia, a country which has a reputation for enlightened
care of the mentally retarded. They found, predictably, that large
facilities in both countries provide the most institution-oriented and
depersonalized placements but also that Scandinavian practices are
generally more resident-oriented, particularly in the severe units.
The authors offered the following explanations for the difference in
care between the two countries: 1) Scandinavia's policy of normaliza-
tion has attempted to provide a life for its retarded that approximates
cultural norms as closely as possible, including living environment,
social behavior, and freedom of choice; 2) child care is a valued
profession and requires a three-year child developmental training
program involving both class work and hands-on training; and 3) the
best client-staff ratios were found in the severe units. Overall,
though, care practices in both countries were determined by the size
of the institution and not significantly affected by cost per resident,
number of aides, or number of professionals per resident.
MacEachron (1983) found an increase in adaptive behavior one year
after residents had moved into new, normalized cottages at a state
institution. However, the institution was applying for federal fund-
ing and so the newer cottages also provided more programming and
training for the residents than did the control cottages. Whether the
more normalized environment would have been significant in the absence
of the programming requirements is doubtful.
Balla et al. (1974) found response to institutionalization to be
differentially affected by characteristics such as residents' preinsti-
tutional history, sex, diagnosis, and the particular institutional
environment. Out of five social skills variables examined,
responsiveness to social reinforcement was the only factor found to
be significant. Residents were more motivated for social reinforcement
(as measured by total time on task when performance was verbally praised
by the experimenter) in the institution that had subjectively been rated
by the authors as providing the most attention to the residents. They
question their own finding on the basis of previous research (Green &
Zigler, 1962; Stevenson & Fahel, 1961; Zigler, 1961, 1963; Zigler & Balla,
1972; Zigler et al., 1968) which suggests that a socially deprived
environment encourages heightened motivation for social reinforcement.
The authors conclude that their subjective opinion of which institution
provided the most attention to residents was incorrect since those
residents should not have demonstrated the most desire for social
contact. This interpretation is questionable. Research has shown
that social behavior can be reinforced or extinguished (Mayhew et al.,
1978). Behavior theory predicts that an institution which provides
attention to residents will have a high rate of reinforced attention-
seeking responses. However, despite the tenuous nature of their
decreased attention/social reinforcement hypothesis and a question-
nable definition of social motivation, Balla et al.'s conclusion that
smaller is not necessarily better when comparing institution size is
Bedner (1974) found that smaller homes foster interpersonal rela-
tionships but Bell (1974) disagrees, stating that friendship between
residents is more likely to occur in larger, more diverse homes where
residents have a better chance of finding a friend who shares their
interests. Landesman-Dwyer et al. (1980) found that staff-resident
interactions did not vary with home size but that the most resident-
resident interactions occurred in medium-size homes of nine to seventeen
residents and the least in small homes of six to eight residents.
Residents of large homes (eighteen to twenty residents) were most likely
to have a "best friend." Effects of group home size were secondary to
variables such as geographic location of the home, heterogeneity of
the residents' backgrounds, and average resident age.
Rotegard et al. (1983) found smaller facilities (less than sixteen
residents) to be more homelike than larger settings, and residents in
homes of five to eight persons most encouraged to be autonomous and
active. It must be noted, however, that the larger facilities had
lower level, more handicapped residents and less satisfied staff mem-
bers. The authors follow a tautological line of reasoning when they
say that higher level, higher functioning clients are more autonomous
In his review of the literature, Baroff (1980) suggests that size
differences are only important when large, as when comparing a large
institution to a small group home. Within the type of placement (large
central institutions, large and small regional centers, and group
homes), actual size has not been shown to be significant. Seven out
of the eight studies reviewed by Baroff suggest that smaller settings
provide more advantages for residents. The eighth study found no
differences. Community settings may provide more individualized
experience and opportunities for residents, but Eyman et al. (1975)
found that institutional residents enrolled in training programs
showed significantly greater improvement than residents who received
standard institutional care or former residents who had moved to com-
munity homes that did not provide training.
Pre-Institutional History of Residents
In their 2.5 year longitudinal study of the effects of institu-
tionalization on retarded children, Balla et al. (1974) determined that
preinstitutional social deprivation can significantly affect later
development, as measured by IQ and social responsiveness. While no
overall IQ effects were noted, residents of two of the institutions
studied experienced significant changes in IQ after placement. The IQ
decrease of children who had experienced low degrees of preinstitu-
tional social deprivation suggests that the institutional setting is
less reinforcing in general to children who have had richer pre-
institutional experience. The authors suggest that these children
exhibit behaviors that compete with the motive to be correct during the
testing situation and therefore obtain lower IQ scores. IQ decreases
in children who experienced high amounts of social deprivation prior
to placement are attributed to their motivation to escape the testing
situation. The authors conclude that development after institutional-
ization is a function of both the particular placement as well as the
resident's pre-institutional history of deprivation. The subjectively
rated deprivation levels of the various institutions studied must be
taken into account when interpreting the authors' findings.
In their review of the literature Lemanowicz et al. (1980) found
that residents socially deprived before institutionalization experienced
increases in IQ and social responsiveness after placement. The rate of
growth did not remain steady but lessened as the length of time in the
institution increased. Individuals who have a prior history of
"emotional instability" or "past liability" can be expected to respond
poorly to change (Cohen et al., 1977).
Length of Deinstitutionalization
Clients placed in community homes exhibited more gains in their
adaptive level after one year in the community, especially in their
communication skills, than did controls who had remained in the
institution (Schroeder & Henes, 1978). Gains were most evident shortly
after placement and tended to stabilize with time. The authors question
whether the environment aided in the acquisition of new skills or merely
encouraged more use of already-existing skills, adding that "institu-
tional staff often remark at the amazing disappearance of the
'institutional shuffle' when residents leave campus" (p. 148). While
Macy (1977) found no clear trend between length of time in community
placement and level of independent functioning, his results did support
Coffman and Harris' (1980) contention of an initial "honeymoon"
period after movement to the community followed by an extended adjust-
In addition to the environmental factors already discussed,
researchers have examined institutionalized residents' response
to the number of staff assigned to a ward, staff attitudes, and
One or two ward attendants admittedly have a difficult time caring
for a unit of fifteen to twenty clients. If the usual duties of house-
keeping and laundry are also their responsibilities, attendants' time
or motivation for positive interactions, not to mention training, is
limited. The logical solution then is to assign more people to the
ward. Unfortunately, or perhaps fortunately since more staff means
more expense, the solution is not all that easy.
In their 1975 study, McCormick et al. examined staff-client ratio
in terms of both number of aides and number of professionals per
resident and found neither ratio to be predictive of care practices.
The Scandinavian homes studied generally had twice as many clients per
staff member as did the American homes (U.S.: seven to twenty-four
clients supervised by one line-in couple; Scandinavia: fifteen to
fifty-seven clients supervised by one live-in couple) but provided the
same services. Merely increasing the number of staff does not insure
better care for residents. Scandinavian staff utilization practices,
normalization philosophy, and respect for and training of child care
personnel demand more scrutiny if optimal institutional care is to be
Harris et al. (1974) time sampled a ward at a state institution
and found that increasing the number of aides had no effect on the
amount of formal training and proportion of positive attention given
the residents. Neither have low staff-resident ratios been shown to
increase resident adaptive behavior levels (Grant & Moores, 1977).
Harris et al. did find that aide behavior was more nurturant and
pleasant when fewer residents were present and suggest that assigning
an aide to a specific group of clients would be more effective than
merely increasing numbers of staff.
Blindert (1975) counted an average of less than one staff-resident
interaction per 10 minutes when one employee was present on the ward.
An increased ratio of 2.4 staff to 7.6 residents still resulted in less
than one (0.58) teaching and learning and only 1.94 total staff-
resident interactions per client. Increasing the number of staff
resulted in more staff-staff discussions about extracurricular topics
rather than acceptable staff-resident interaction levels.
Staff Behavior and Attitude
What are staff doing while they are on duty? Less than 1% of their
time is spent in positive interactions with residents (Landesman-Dwyer
et al., 1980). Thormahlen's 1965 study (cited in Dailey et al., 1974)
found that aides spent 2% of their time training self-care skills and 36%
encouraging dependency behaviors. Aggressive and antisocial residents
receive a large proportion of staff attention (Grant & Moores, 1977) while
residents with higher levels of independence and adaptive behavior and lower
levels of maladaptive behavior receive a greater proportion of interactions
that "promote warmth or positive development." In order to encourage staff
interest in each resident, regardless of perceived client attractiveness
or problematic behaviors, Grant and Moores suggest reorganizing units
so that each staff member will be responsible for a definite group of
Blindert (1975) found "correct" attitudes in the staff he ob-
served, negated unfortunately by their focus on other staff rather
than on training and client-oriented interactions.
Mayhew et al. (1978) conducted an ABAB reversal study in which
attention was alternately given to and withheld from severe-profound
girls in a ward dayroom. Social behavior was found to be dependent on
the experimenter's behavior, suggesting that residents who exhibit
little social behavior may be under a permanent extinction schedule
instead of lacking social skills as has usually been thought. Obser-
vation of the ward six months after the study showed that staff con-
tinued to exhibit resident-directed social actions only about 10% of
the time. Seventy-five percent of their time was devoted to custodial
and housekeeping duties. Warren and Mondy (1971) observed that aides
failed to respond to appropriate resident behavior 75-80% of the time.
Veit et al. (1976) found that aides ignored 30% of all resident-
initiated interactions, and any interactions that did occur were
mainly neutral. Staff members designated and trained as behavior
modifiers spent no more time training than did regular aides (Gardner
& Giampa, 1971).
Dailey et al. (1974) found that aides spent 51.2% of their time
interacting with clients, but that this occupied only 4.2% of the
"average" resident's time and was mainly directed toward those
residents perceived as "attractive, likable and intellectually competent"
(p. 590). This finding agrees with Veit's (1973) that 24% of the resi-
dents received 57% of all attention and further supports the hypothesis
that most residents are on an inadvertent extinction schedule.
Environmental setting can influence staff attitudes (Tognoli et
al., 1978). Egocentric behaviors emitted in a ward dayroom (sitting
alone, watching TV) were rated as being more active by ward attendants
than by psychologists and therapists. Administrative personnel and
ward attendants showed no significant difference in their ratings of
dayroom versus playroom behaviors, the administrators having little
day-to-day contact and the attendants stationing themselves in an
office away from the residents. Tognoli et al. express concern that
differing perceptions of resident behavior may result in programs
not being run as designated since the programs are often written by
therapists but implemented by aides.
As the literature has shown, life in an institution can be
either positive or negative for the residents. Size alone is not
important; factors such as preinstitutional history and staff number
and characteristics influence resident development.
Conroy and Lemanowicz (1981) have suggested several ways to
encourage resident growth in institutions:
1. Increase day program hours away from the sleeping area;
2. Increase the individualized treatment of clients as opposed to
treatment "en masse" and rigid routines that everyone must follow;
3. Review and decrease medications wherever experienced physicians
deem it safe;
4. Beyond these steps, other actions (such as increasing staff ratio,
getting ICF/MR certification, or meeting the AC/MRDD standards for
programming) are likely to have relatively little effect.
Both research and emotion play a part in resolving the question
of whether or not community placement is preferable to institution-
alization. As the above review of the literature has shown, this is
a simplistic approach to a complex problem and has resulted in a rush
to deinstitutionalize with very tenuous research support. The concern
should instead be one of custodial versus therapeutic care (Kleinberg
& Galligan, 1983), and of the individual characteristics of each client
and potential community placement (Gibson & Fields, 1983). Factors such
as size of placement, number of staff, and budget seem to be foils if
not implemented in coordination with other community or physical plan
characteristics: It is what is happening inside the placement that
the literature says is critical.
Success of Community Placement
Movement of retarded persons from institutional settings into the
community is not a simple matter for the persons involved and, in
fact, can become very difficult for several reasons. Community place-
ments made between 1960 and 1965 had a failure rate of 52% compared with
only 40% failure for the period 1941-1965 (Gibson & Fields, 1983).
Examination of successful placements since 1929 reveals a negative
correlation between success rate and budget, staffing and presumed
quality of programs; i.e., success rates were highest during poor
resource and funding years (and when higher level, well-behaved resi-
dents were being placed). Gibson and Fields suggest that the current
decline in success rate is due to changes in institutional intake policy
and release mandates. Institutional admissions are presently restricted
mainly to the more handicapped individuals, and the pool of residents
who may be considered for community placement is composed of physically,
emotionally, and behaviorally problematic individuals who may have
already failed in the community or who have never been considered
appropriate for placement.
Problems in Community Placements
Group living and foster homes have the potential for providing a
truly homelike, normalized placement for mentally retarded persons.
The fact remains, though, that since 1978 the number of readmissions
to public residential facilities has exceeded the number of first
admissions (Lakin et al., 1982). In the present author's experience,
a disappointingly large number of clients have returned to Sunland
from community placement, often in emotional distress and on heavy
doses of emergency psychotropic medication (drugs which influence
affective, emotional, and behavioral states). For some clients, in
fact, this writer has found that the institution appears to be the
least restrictive environment or at least one in which they experience
less severe emotional stress.
Transition shock (transitional adjustment) should be expected when
a mentally retarded person experiences a major life change, especially
if the change is not voluntary or understood by the resident (Macy,
1983). Response to community placement, while an individual matter,
is additionally influenced by level of retardation (Cohen et al.,
1977). Higher functioning persons tend to become depressed and with-
drawn while lower functioning persons exhibit more behavior, both
appropriate and inappropriate.
Residents have a great deal of personal freedom at Sunland. Most
live in unlocked cottages, go outside at will to visit with others or
play, and have access to the Center bank and store. Movies and dances
are frequent, as are field trips into the community. In addition to a
degree of independence, Sunland also provides a great deal of structure
and behavioral control for the clients. Career staff have known many
of the residents since their placement at the Center many years ago.
Movement to a small community setting often requires a great deal
of adjustment for a retarded person who has been used to a very dif-
ferent type of lifestyle and who may accept change with difficulty.
Community placements are often physically attractive but may have
locked doors because of close proximity to a highway. Clients who try
to go outside as they have been used to doing at the institution have
been branded behavior problems. Unusual behaviors emitted while trying
to adapt to their new home have been labeled schizophrenic.
Motivated and empathic staff working in community placements often
lack the experience necessary to deal successfully with problematic
clients. The structure provided in the community is frequently loose,
the staff have no background knowledge of the particular client, and
inappropriate behaviors may quickly increase in frequency. Communica-
tion between community staff and Sunland has been poor in that often
the first indication Sunland staff have had of a problem is the return
of a client to the Center, frequently after the client had caused a
fairly serious disturbance in the community and required psychiatric
and/or crisis intervention.
The majority of clients who adjust successfully to the community
are very happy there (Sandler & Thurman, 1981) but more than half of
those who return to the institution express a definite preference for
institutional life. One client was happy to return because "the house
manager beat me up when I fed the dogs too much. I couldn't go any-
where. I had to stay in the house. Not allowed to open doors [sic]."
(p. 248). Obviously, one cannot say that community placement per se
is superior to life in an institution.
Factors Involved in Successful Community Placement
Many community placements provide excellent care for their resi-
dents but exactly what constitutes a successful environment has not
been determined. Sandler and Thurman (1981) found a lack of empirical
evidence in the literature and concluded that "philosophical/legal/poli-
tical mandates for community placement have continued to provide the
major impetus for the community placement movement" (p. 245).
Staff expectations affect resident behavior. Placement in a com-
munity setting may permit use of social, domestic, and communication
skills that have been previously unneeded or unreinforced (Kleinberg &
Galligan, 1983). Campbell (1971), however, found that clients living
in a community placement showed no progress, probably because the staff
did not expect them to do things for themselves. Clients in an
enriched or training community environment show substantial gains as
compared with residents who remain in an institution which does not
provide any special programming or training (Tizard,
1964; Close, 1977). By the same token, clients in an institution who
receive special training are more likely to show progress and continue
to learn than are clients who are moved to a community setting but
receive no special training (Eyman et al., 1975).
Bjaanes and Butler (1974) studied several board and care facili-
ties (thirty to fifty residents) and home care facilities (four to six
residents) and found that the board and care facilities achieved more
closely the objectives of fostering normalization and developing
social competence. More social interactions and independent behavior
were encouraged in the board and care facilities. The authors suggest
that the staff-resident ratio of one to seventeen provided for much
less supervision and structure than did the home care facility ratio
of one to five and permitted more social interactions and independent
behavior to occur. The main finding of the study, however, was the
importance of the amount of community exposure afforded the residents.
Clients at the board and care facilities lived within walking distance
of movies, buses, parks, and a mall. They were basically free to go
where they wanted and were more likely to attempt to conceal their
retardation and history of institutionalization than were the clients
in the home care placements, which were located in suburban areas but
not within walking distance of any facilities or entertainment.
Hull and Thompson (1980) investigated further the question of
optimizing adaptive functioning in a community placement through
manipulation of the environment. In agreement with other research
discussed, the two most important environmental factors identified in
the study were the location of the residence (accessibility to and
from the residence and adequacy of transportation facilities) and the
promotion of socially integrated vocational, educational, recreational,
and social activities. Other important factors were the extent to
which the residents were helped to achieve culturally appropriate
appearance and behavior, and whether the residents were treated by the
staff with courtesy and respect. Interestingly, quality of physical
setting was slightly negatively related to adaptive functioning, i.e.,
residents in homes with somewhat poorer physical plant demonstrated
slightly greater Community Awareness (transportation, budgeting, shop-
ping, cooking, and leisure skills). The authors do not attempt to
explain this finding, but do suggest that merely improving the physical
appearance of a residence is not sufficient to insure successful
community placement. They point out that their findings are based
on cross-sectional research and that longitudinal studies are
necessary to further isolate the factors most important for successful
client adaptation to the community.
While environmental and staff characteristics are important in
helping an individual adjust to a new home, pre-move interventions
significantly reduce transition shock and thereby enhance the probability
of successful adjustment. In the present emphasis on decreasing
institutional census and moving residents to a (hopefully) more nor-
malized, humane environment, "lost is the realization that the new,
cleaner environment with its additional services, higher staffing
levels, greater individual space and more personal attention represent
dramatic changes that may be perceived as a threat and therefore create
stress" (Macy, 1983, p. 26).
The literature suggests some strategies for preparing institu-
tional residents for community placement: desensitization to the new
neighborhood culminating in visits to the new home, a process used
successfully with four mildly retarded schizophrenics (Dondey, 1982);
slowly increasing demands on new residents (Harris et al., 1981);
instruction for community staff in the institutional teaching methods
and daily schedules (Coffman & Harris, 1980); and involving residents
by having them construct photo albums of both the institution and
their new placement and peers (Williams, 1982).
The issue of institutional versus community placement is a mis-
leading attempt to find an easy answer to a complex problem. Research
studies have so far found answers that satisfy proponents of both
institutionalization as well as deinstitutionalization but there is
substantial evidence that a complex set of factors and interactions
is involved. To say that one setting is preferable to another is to
ignore the individual variables involved in each placement such as
physical plant, number of residents, staff-client ratio, staff
attitudes, availability of training and community resources, and client
The "answer" appears to lie in following a more individualized
approach that takes each person's level of functioning and personality
into account in addition to environmental variables. Ellis et al.
(1981) suggest training those clients who show improvement and working
toward an end goal of improving quality of life through the application
of realistic individualized goals for each individual rather than
enforcing "across-the-board, formal, ritualistic training."
Institutions work with large numbers of residents, a sizable
number of whom are non-communicative. Under such conditions, it is
sometimes too easy to forget that these clients are caring, feeling
individuals. Further research is necessary to determine exactly which
conditions are most likely to provide a dignified life for the
developmentally disabled. The present study will look at some of
The underlying hypothesis of the present research was that
retarded persons living in a large state institution will show a
significant increase in adaptive skill level when placed in the struc-
tured training environment of an Intermediate Care Facility for the
Mentally Retarded (ICF/MR). Conversely, persons living in a more
traditional custodial setting at the same institution (non-ICF/MR)
will show little improved development over the same period of time.
Subjects were selected from the population at Gainesville Sunland,
a state institution for the developmentally delayed. The 437 sub-
jects include all moderately retarded residents who had lived in an
ICF/MR cottage for three years and severely and profoundly retarded
residents who had lived in an ICF/MR cottage for at least four years
as of January 1, 1984 (see Table 3-1). Less data were available for
moderately retarded ICF/MR subjects because the facilities housing
them had been licensed for less time than the facilities housing the
severely and profoundly retarded ICF/MR subjects. All moderately,
severely, and profoundly retarded residents who had lived in non-ICF/MR
cottages for the corresponding period of time served as control subjects
and their 1979 Social Age (SA) scores were used to correspond with
ICF/MR entry scores. All research was conducted by means of record
review and subjects' names were held in confidentiality.
The 437 subjects comprised 50% of Sunland residents at the time
of data collection. Mildly retarded residents living in the institu-
tion were not included because their numbers were too few to provide
adequate statistical representation. Two ICF/MR cottages (N = 16) were
excluded from the study because the clients living in them are extremely
medically handicapped and not representative of the general population
at Sunland. They require twenty-four hour nursing care and, although
they receive ICF/MR programming services, many are essentially un-
responsive to stimuli.
Composition of Subjects by Treatment and Level of Retardation
Moderate 7 (2%) 58 (13%)
Severe 10 (2%) 42 (10%)
Profound 141 (32%) 179 (41%)
Total 158 (36%) 279 (64%)
IQ tests are administered to Sunland clients every three to six
years depending on the client's age. IQ remains stable for most
residents except for unusual circumstances such as neurological
deterioration or sudden improvement in health or behavior. The IQ
obtained from each client's most recent intelligence test was used in
the present study. The following five intelligence scales are com-
monly used at Sunland:
Cattell Infant Intelligence Scale--A test administered to infants
and children aged three to thirty months, evaluates developmental
Bayley Scales of Infant Intelligence--A developmental status test
similar to the Cattell for ages two to thirty months;
Stanford Binet--An age scale test that presents a series of tasks
designed for each of several age levels ranging from age two
years to superior adult. Emphasis is placed on verbal and com-
prehension skills, especially at the higher levels;
Leiter International Performance Scale--A non-verbal test which
measures ability to match colors, shapes, and concepts;
Peabody Picture Vocabulary Test--A test for ages 2.5 to eighteen
years which measures verbal and pointing skills.
The Wechsler Scales' emphasis on verbal skills makes them un-
suitable for administration to most clients at Sunland. A test which
has items most matched to the individual client's functioning level
and on which he or she can achieve at least a basal score is adminis-
tered. A ratio IQ is then calculated (IQ = CA/MA x 100) rather than
the standardized deviation IQ which has been normed to a particular
The Vineland Social Maturity Scale (VSMS) was developed by Doll in
1935 (Doll, 1964) to measure normal adaptive level but is now often
used with retarded populations as well. The VSMS is a 117 item, third-
party interview instrument designed to assess level of functioning in
self-help areas such as eating and dressing, self-direction (primarily
money management), occupation (use of time), communication, locomotation,
and socialization. Information is provided by someone other than the
person being assessed, usually a parent or caregiver. Doll, as cited in
Teagarden (1970), defined children's social maturity as "a progressive
capacity for looking after themselves and for participating in those
activities which lead toward ultimate independence of adults" (p. 575).
The instrument measures skills present from infancy to twenty-five years
and provides a Social Age (SA) and a Social Quotient (SQ). The follow-
ing scale is used at Sunland to assign a level of adaptive functioning:
Social Quotient Classification
The VSMS was developed to measure normal development but is widely
used in institutions for the retarded to provide the measure of adap-
tive level necessary for the two-part AAMD definition of retardation
given in Chapter I. Each client at Sunland is assessed yearly.
The VSMS has proven to be a useful tool but its reliability and
validity have been questioned because of the third-party nature of the
instrument. Items are scored based on the response of possibly biased
and untrained observers, usually cottage staff (Kinder, 1970; Rothney,
1970). Cruikshank (1970, p. 574), however, wrote favorably of the
instrument's ability to provide information on "the results of the
individual's maturational interaction with his social milieu." He
expressed concern about the necessity of relying on an informant but
was satisfied with Doll's insistence that the VSMS be administered
only by clinically trained examiners. This is the case at Sunland,
where administration of the VSMS is conducted solely by trained psycholo-
gists. Teagarden (1970) also found the scale to be a useful clinical
Fromme (1974) found a positive correlation between the VSMS and
Stanford-Binet (r = .87) and suggested that the VSMS can be used to
estimate IQ for children above the age of fifty months. A correlation
of .52 between the VSMS and Wechsler Intelligence Scale for Children
(WISC) and the limited nature of Fromme's sample suggest only a very
limited use for the VSMS as an estimate of IQ. Both Teagarden (1970)
and Cruikshank (1970) say that IQ and SQ scores do not measure the
same construct and may differ for the same person. Some lower-IQ
individuals have advanced social skills, especially if raised in a
supportive and instructional environment, whereas the problematic
behaviors of some higher-IQ persons may cause their SQ to be lower than
one might expect.
Doll standardized the VSMS on a sample of 620 normal individuals
which consisted of ten subjects of each sex from birth to thirty years
(Furfey, 1970). Socioeconomic status was controlled by paternal occu-
pation and all subjects lived in Vineland, New Jersey. Doll showed
that SA continues to increase through adolescence and to the age of
twenty-five when it stabilizes. Doll obtained a test-retest reliability
of .92 for 125 subjects who were reexamined at intervals ranging from one day
to nine months. Bradway,as cited in Furfey (1970), found a test-retest
reliability of .94 for 144 mentally retarded individual retested at
"intervals sufficiently short to preclude growth or deterioration of
competence" (p. 257). Gardner and Giampa (1971) reported an interscorer
reliability of .78 based on reports of two attendants for fifteen
severely and profoundly retarded residents. They reported normally
distributed scores and adequate differentiation within the studied
population. The scores of a team of psychologists, nurse, and ward
attendants who rank-ordered the same residents by estimation based on
their experience with the subjects correlated .89 for the "brighter
residents" (divided according to overall competence), and .62 for the
"slower residents" with VSMS scores, demonstrating that the VSMS has cri-
terion validity for classification of severely and profoundly retarded
At Sunland, the psychological staff has agreed upon the interpre-
tation of VSMS items and uses a standard list of modifications which
apply specifically to Sunland clients (e.g., a client who can move his
or her own wheelchair is considered to ambulate independently; see
Appendix A). Each year's VSMS score is compared with those of the
previous years and any discrepancies investigated further to verify
that they reflect true differences in adaptive level rather than
informant/interviewer differences. The scores are considered by the
psychological staff to be reliable and valid indicators of each client's
adaptive level of functioning and to accurately reflect adaptive growth
or lack thereof.
Based on the author's personal experience as a psychologist at
Sunland, the VSMS is an appropriate, reliable, and valid measure of
adaptive functioning when the interviewer is trained in the use of the
instrument and obtains accurate information from the informant. Al-
though the VSMS has received some criticism, it meets validity criteria
and is an appropriate instrument both in practice and for research.
Some subjectivity (error) certainly remains due to the third-party
interview format but is expected to be randomly distributed.
Review of the literature and the author's experience suggested
the following hypotheses:
H1: ICF/MR subjects will have significantly higher VSMS
scores than non-ICF/MR subjects when grouped by level
of retardation: moderate, severe, and profound.
It is anticipated that ICF/MR clients will make annual gains in VSMS
scores while non-ICF/MR scores will remain stable.
H2: There will be significant differences on VSMS scores
of profoundly retarded ICF/MR subjects according to
their amount of physical handicap.
The presence of major physical handicaps of deafness, blindness, and
non-ambulation is expected to make the acquisition of self-help and
daily living skills for the profoundly retarded even more difficult
than would be the case for a profoundly retarded person who has no
physical disabilities. Persons who are afflicted with two or more
major physical handicaps are expected to show the least progress.
H3: Amount of time subjects were institutionalized before
ICF/MR placement will be negatively related to VSMS
H4: Age at time of institutionalization will be positively
related to VSMS scores for ICF/MR subjects.
H5: Number of years spent in ICF/MR will be positively
related to VSMS scores.
Residents who have lived longer in the traditional, custodial atmosphere
of the institution before placement in an intensive training program
are expected to show less improvement than persons who have had greater
exposure to the stimulating and normalizing effects of a non-institu-
tional environment. Those who were institutionalized at an older age
will presumably have had more experience in the community which should
allow them to profit more from ICF/MR training. Progress should also
increase as the amount of time spent in the training program increases.
Five training and five non-training cottages composed of moderately,
severely, and profoundly retarded residents (N = 178) at Gainesville
Sunland were examined in a pilot study (Bedinger & Miles, 1982) and
significant differences in rate of client adaptive development were
found. Clients living in ICF/MR cottages showed significant overall
improvement while those in non-ICF/MR cottages made little progress.
The present research expanded the pilot to include 437 Sunland
residents. Subjects were grouped by level of retardation, i.e.,
moderate, severe, and profound, since response to training may be
expected to vary among persons of different intellectual capacity.
Profoundly retarded subjects were further grouped by number of major
physical handicaps. Only ICF/MR subjects were represented in this
group due to movement of persons with major physical handicaps out of
non-ICF/MR units into licensed units. Thirty-four (24%) of the 138
profoundly retarded subjects had at least one major handicap and nine
(6%) had two or more.
Differences between groups were examined in order to evaluate the
effectiveness of the ICF/MR program as a whole. Since group data give
no information about a specific individual's response to training, case
studies were written for twelve subjects in Facility III in order to
examine individual differences (see Appendix B). Probable factors
implicated in client progress or lack of progress were suggested. The
ICF/MR Facility III was chosen for the case studies because the author
was personally familiar with the clients' histories since 1980. Sub-
jects were selected by sex and level of retardation so that each
category is represented by two subjects, i.e., two male moderately
retarded subjects, two male severely retarded subjects, and so on.
Selection included subjects who have progressed in the ICF/MR program
as well as some who have failed to show improvement.
Case study information was obtained through record review and
observation. Consent forms were signed by each client's parent/guardian
(see Appendix C).
Design and Analyses
In order to test the hypotheses a 2 x 3 factorial design was
used with an n of 158 for the ICF/MR subjects and 279 for the non-
ICF/MR subjects (N = 437).
A repeated measures design (ANOVA) was used to test differences
between means. Specific hypotheses were then tested using Fisher's
Least Significant Difference (LSD) with alpha at .05 for all tests.
Since the hypotheses of interest were directional and a priori, the
consequences of making a type I error would not be serious.
Correlations between Social Age and age at institutionalization,
length of time institutionalized,and number of years spent in ICF/MR
were calculated to determine whether any of these variables contribute
to the potential success of an ICF/MR placement.
Subjects living in Intermediate Care Facility for the Mentally
Retarded units at Sunland were expected to show greater improvement
in adaptive level than subjects living in non-ICF/MR units at the same
institution. Within each ICF/MR condition, subjects were grouped by
IQ and the profoundly retarded were further grouped by number of major
physical handicaps. Relationships between Social Age and length of
time institutionalized before ICF/MR placement, age at institution-
alization,and time spent in ICF/MR were studied. Twelve case studies
examined individual differences.
Chapter IV will present the results of the statistical analyses.
Social Age scores obtained on the Vineland Social Maturity Scale
(VSMS) were analyzed over six years to determine whether mentally
retarded persons living in the Intermediate Care Facility for the
Mentally Retarded (ICF/MR) training program at Gainesville Sunland
made significantly more progress than did those living in traditional
care units at the same facility.
Effects of ICF/MR Placement
H1: ICF/MR subjects will have significantly higher VSMS
scores than non-ICF/MR subjects when grouped by level
of retardation: moderate, severe, and profound.
Results of the analyses support the hypotheses of significantly
higher VSMS scores for ICF/MR subjects at all levels of retardation.
Repeated measures effects and the ANOVA interaction for the moderately
retarded group were significant (F(4,252) = 7.19, p < .05 and F(4,252)
= 5.23, p < .05, respectively). Main effects were not significant
(see Appendix D). Further analysis revealed that only the ICF/MR
subjects made significant gains (Fisher's LSD (1,2) = 3.78, p < .05;
see Figure 4-1). The control subjects showed no significant improve-
ment either before or after unitization.
Severely retarded subjects showed significant effects for repeated
measures (F(5,250) = 7.62, p < .05) and interaction effects (F(5,250 =
ENITRY ICF/1'IR YEARl YEAR YEAR3
o ICF/MR NON-ICF/MR
Figure 4-1. Moderately retarded
5' ~---- -E---
ENTRY ICF/,' YEARl YEAR YEAR3 YEAR
o ICF/MR NON-ICF/MR
Figure 4-2. Severely retarded
3.58, p < .05). Main effects were not significant (see Appendix E).
Only the ICF/MR subjects made progress during the four years following
ICF/MR placement (Fisher's LSD (1,4) = 3.49, p < .05). The control
subjects progressed significantly during the period between initial
VSMS score at Sunland and entry to ICF/MR (1979 score for control sub-
jects) (Fisher's LSD (1,36) = 3.58, p < .05) but they made no signifi-
cant progress during the following years, including the post-unitization
All effects at the profoundly retarded level were significant (see
Appendix F): main effects (F(1,318) = 19.10, p < .05); repeated
measures (F(5,1590) = 45.31, p < .05); and the interaction of the two
(F(5,1590) = 16.14, p < .05). Progress for both the ICF/MR and control
subjects was significant during the period between their first VSMS
scores at Sunland and entry to ICF/MR (1979 score for control subjects;
Fisher's LSD (1,135) = 3.66, p < .05 and (1,173) = 6.39, p < .05,
respectively) but only the ICF/MR subjects made significant progress
during the four years following ICF/MR admission (Fisher's LSD (1,135)
= 8.97, p < .05; see Figure 4-3). Progress for the year following
unitization was significant for the control subjects (Fisher's LSD
(1,173) = 3.09, p < .05).
The gain in Social Age scores for moderately retarded ICF/MR sub-
jects was 1.74 (23%), for severely retarded subjects 1.19 (30%),and for
profoundly retarded subjects .49 (25%).
Figure 4-3. Profoundly retarded
SENTRI ICF/'M YEAR YEAR YEAR YEAR
o 0 HANDICAP 1 HANDICAP
x 2+ HANDICAPS
Figure 4-4. Profoundly retarded handi-
capped ICF/MR subjects.
EcTR ICF/'ER YER2 YEfR3 YER4
EU(TRY I~CF/ri Y'EfIR YrEAR2 YE~R3 YEAR41
Effects of Handicap Conditions
H2: There will be significant differences on VSMS scores
of profoundly retarded ICF/MR subjects according to
their amount of physical handicap.
The hypothesis of differences in VSMS score based on number of
major physical handicaps was supported. Significant omnibus effects
(see Appendix G) were found (F(2,135 = 11.94, p < .05) as well as sig-
nificant repeated measures effects (F(5,675) = 22,02, p < .05). There
were no significant interaction effects. Subjects with no and with one
major handicap made significant progress during the four years after
their admission into ICF/MR (Fisher's LSD (1,89) = 9.5, p < .05 and
(1,28) = 6.28, p < .05, respectively; see Figure 4-4), but subjects
with two or more handicaps did not make significant progress. The only
group that made significant progress before their placement into
ICF/MR was the no handicap group (Fisher's LSD (1,89) = 5.16, p < .05).
After four years in ICF/MR, profoundly retarded subjects who had
no major handicaps showed a SA gain of .5 (23%); subjects with one
major handicap gained .55 (31%); and subjects with two or more major
physical handicaps gained .24 (25%), compared with the overall gain
of .49 (25%) for all profoundly retarded ICF/MR subjects.
Relationships Between Social Age and
H3: Amount of time subjects were institutionalized before
ICF/MR placement will be negatively related to VSMS
H4: Age at time of institutionalization will be positively
related to VSMS scores for ICF/MR subjects.
HS: Number of years spent in ICF/MR will be positively
related to VSMS scores.
Level of retardation was found to be related to SA, r = -.62,
accounting for approximately 36% of the variance (see Appendix H). The
negative nature of the correlation is due to the level of retardation
classification system, i.e., moderate retardation = level 3, severe
retardation = level 4, and profound retardation = level 5. The results
verify that less retarded persons exhibit a higher level of adaptive
skills than do those who function at a lower intellectual level. No
other correlations were significant (see Appendix I) and the hypotheses
for effects related to length of time institutionalized before ICF/MR
placement, age at institutionalization, and time spent in ICF/MR
were not supported.
Results of the analyses supported hypotheses for differences due
to ICF/MR placement and handicap conditions. The ICF/MR subjects con-
sistently made progress while non-ICF/MR subjects failed to do so, and
subjects with fewer major physical handicaps responded better than
those with more handicaps. Relationships between Social Age and the
demographic variables were not supported.
Chapter V will discuss the above results and their implications
for the ICF/MR program and for education.
The results of the present longitudinal study demonstrate that
the residents of the Intermediate Care Facility for the Mentally Re-
tarded (ICF/MR) training program at Sunland Center Gainesville have
made significant adaptive growth.
Effects of ICF/MR Placement
Subjects at all three levels of retardation studied, moderate,
severe, and profound, made significant progress while in the ICF/MR
program. Although moderately retarded subjects experienced no change
in Social Age (SA) after their first year in the program,progress
thereafter was dramatic, with an SA gain of 1.82 over the next two
years as compared to a gain of only .17 during the same time period
for the control subjects. The lack of progress noted for the initial
period following ICF/MR placement may be due to the fact that most of
the higher level clients at Sunland have been placed in the community
and many of those still in the institution remain there because of
problematic behaviors that make them poor candidates for successful
community living. The year following ICF/MR placement seems to have
been necessary to bring some of the maladaptive behaviors under enough
control to permit existing skills to manifest themselves and new skills
to be learned. This pattern was evident for three of the four
moderately retarded clients studied individually, EF, KL, and MN (see
Appendix B, Case Studies 3, 6, and 7). Severely retarded ICF/MR sub-
jects made significant progress every year after ICF/MR placement but
none before, attesting to the effectiveness of the training program.
Individual differences in ability and intelligence exist within
levels of retardation. A blind, deaf, and medically involved person
who is profoundly retarded is distinctly different than a profoundly
retarded person who has some speech, can feed and dress himself or
herself, and participates in social activities. Profoundly retarded
ICF/MR subjects were therefore grouped by number of major physical
handicaps and distinctly different results were found at each level of
handicap. Profoundly retarded subjects who exhibit no major physical
handicaps consistently function at a higher level than those with one
major handicap, who in turn function more fully than those with two or
more major handicaps, the only group not to make significant progress.
Three factors must be taken into consideration in interpreting
the lack of progress for ICF/MR subjects with two or more major
physical handicaps. First, no comparable control subjects were avail-
able for this group since all clients with major handicaps live in
ICF/MR. It is not possible to say, therefore, how this group would
have scored had they not been receiving the structure and training pro-
vided through the program. Secondly, is their non-significant gain of
.24 over five years (as opposed to .55 and .50 for profoundly retarded
with one and no handicaps, respectively) an indication that they have
not profited from the program, or is it instead important that they
have not regressed? In a population so severely handicapped, relative
stability may be the most realistic and desirable expectation. It must
be remembered, too, that group statistics combine data and that not
every handicapped individual failed to make significant progress.
Thirdly, the VSMS is not sensitive to small changes in skill level
since it only credits complete behaviors rather than individual com-
ponents. A multiply handicapped client may have learned some of the
different steps in a skill but not enough to warrant an increase in
With some exceptions, results for control subjects were not sig-
nificant. Adaptive growth for moderately retarded control subjects
remained stable across the entire period studied. Both severely and
profoundly retarded control subjects made progress during the period
between entry to Sunland and ICF/MR placement (1979 SA score for con-
trol subjects) but none afterward, raising the question of whether
they had reached their maximum growth or whether continued traditional
placement in fact inhibited growth. Only the profoundly retarded con-
trol subjects made significant progress during the 1982-1983 year
after the Center reorganization. Although their gain was statistically
significant, the large number of subjects (n = 179), the previous
downward trend (see Figure 4-3) and the gain of only .15 during this
year caution against attaching too much importance to this finding.
In theory, the reorganization that occurred at unitization should
have provided equal services to both ICF/MR and non-ICF/MR units. In
actuality, it appears that care remained unequal. At the time of
unitization in November, 1982, staffing in both ICF/MR and unlicensed
units was equalized except that no housekeepers were assigned to
non-ICF/MR. All cottages were then expected to provide identical
services for their residents. The lack of housekeepers has made
self-care and daily living skills training more difficult in non-ICF/MR
because the direct care staff assigned to these areas are responsible
for custodial duties as well as training. Additionally, unlicensed
facilities frequently have more staff vacancies and provide less regular
training services for their residents because of ICF/MR licensure
priorities. Even though increasing the number of staff does not
necessarily insure improved client services (Blindert, 1975; Grant
& Moores, 1977; Harris et al., 1974), there is a minimum staff
requirement below which the provision of training services is extremely
Physical plant differences continue to exist between the two
halves of the Center as well. The ICF/MR cottages were all renovated
to meet licensure standards and are attractive living units with a
census cap and a degree of privacy for their residents. Non-ICF/MR
cottages retain the traditional large, open dormitory wing and day room.
They have no census restrictions and are frequently crowded. Since
non-ICF/MR facilities have more clients but the same number of staff
positions as ICF/MR facilities, they have a higher staff-client ratio.
Noisy, crowded conditions, a higher staff-client ratio, and fewer
structured training and leisure activities undoubtedly contributed
to the control subjects' lack of progress.
Despite restricted resources, there is an admirable staff attitude
on many unlicensed cottages. The pressure to meet ICF/MR standards
under less than ideal conditions has served as a motivator to many
staff who feel that the extra effort required to provide services
results in better overall quality of life for the residents. On the
other hand, many employees who do not believe in training for mentally
retarded persons have gravitated to non-ICF/MR facilities.
Initial Differences Between Groups
Initial VSMS scores at Sunland were higher for severely and pro-
foundly retarded control subjects than for comparable ICF/MR subjects.
There does not appear to have been any one formal and purposeful de-
cision to place lower-functioning clients into ICF/MR but non-random
placement did apparently occur due to logistical and other reasons.
The first facility to be licensed at Sunland was composed of profoundly
retarded residents who were felt to be the most neglected (J. Bartley,
personal communication, February 26, 1985), which skewed the data
toward the severe-profound level of functioning. Clients who are
functioning at a perceived adequate level are not usually referred
to ICF/MR. Those who are referred generally score at a lower level
because of handicaps or problematic behaviors which interfere with
functioning level. The fact that severely and profoundly retarded
ICF/MR clients initially had lower scores and made significant gains
over time, often surpassing the level of the control subjects, sup-
ports the strength of the program and its applicability to all types
of clients rather than only to well-behaved individuals who exhibit
a willingness to learn.
Very high level clients were not placed in ICF/MR because their
adaptive skills were already considered to be at a functional level
and their days were structured with vocational training assignments.
Scores for these clients did not influence the sample since the mildly
retarded were excluded from the study design.
Relationships Between Social Age and
Relationships between Social Age and demographic variables were
not found to be meaningful. Lemanowicz et al. (1980) found that growth
lessened as the number of years institutionalized increased but the
present study found no relationship between SA and number of years
spent at Sunland before placement into the ICF/MR program. Residents
who have lived in the institution for many years are as likely to
benefit from ICF/MR placement as those persons living at Sunland only
a few years. Lemanowicz et al.'s finding that socially deprived
persons' growth increases after institutionalization would suggest
that clients who spent more time in traditional care units at Sunland
before being moved to the ICF/MR program would show more progress than
clients who had not been as "socially deprived" prior to entering the
program. Balla et al. (1974), on the other hand, found that children
less deprived before institutionalization showed more development
after 2.5 years than did the more deprived children. Results of the
data and the case studies showed no relationship between the two
variables and support neither of the two studies mentioned. Eyman et
al. (1975) found that older, mildly retarded individuals made more
adaptive gains than did younger or more severely retarded residents
living in community homes. Chronological age of Sunland clients was
not found to be related to adaptive gain. More interestingly, age at
placement into ICF/MR was not significantly correlated with SA.
Implications for ICF/MR
The funding and licensing of an ICF/MR unit does not in itself
guarantee adequate service delivery to retarded residents (Bible &
Sneed, 1976; Conroy & Bradley, 1981; Repp & Conroy, 1980). This study
demonstrated that the ICF/MR program at Sunland Center is effective and
that ICF/MR residents consistently made progress and give every indica-
tion of continuing to do so. Studies which have found ICF/MR to be
ineffective have concentrated on the lack of resident training provided
during non-survey periods (Bible & Sneed, 1976; Repp & Barton, 1980).
Although state and federal surveys are unannounced as suggested by
Bible and Sneed, this fact alone is probably not enough to sustain the
intense level of activity necessary during the months between visits.
The in-house monitoring system at Sunland was established to insure
that services are provided as scheduled. Surveys by the in-house
Quality Assurance Team and monthly self-monitoring by facilities
appear to be responsible for much of the success of the program at
Sunland. The ICF/MR standards and accountability are taken very
seriously and every effort is made to operate at a consistently high
level of performance. There is a point, however, at which reliability
checks become so cumbersome that they may interfere with the actual
delivery of services they are supposed to insure, and care is needed
to avoid reaching this point. Overburdened and underappreciated staff
will "burn out" and both the program and clients will suffer.
Staff performance is of primary importance in insuring client
progress and compliance to licensure standards. Merely increasing the
number of staff assigned to a unit does not guarantee appropriate ser-
vices for the residents (Blindert, 1975; Grant & Moores, 1977; Harris
et al., 1974; McCormick et al., 1975), nor is the amount of actual
training provided to staff sufficient in itself (Gardner & Giampa,
1971). The value placed on staff efforts (McCormick et al., 1975) and
the assignment of specific clients to staff so that all residents re-
ceive individualized attention (Grant & Moores, 1977) are also impor-
tant. Studies of CD, IJ, KL, and KF (see Case Studies 2, 5, 6, and
8) illustrate the strong effects of individualized attention. Priority
must be placed on hiring well-motivated, intelligent staff and then
giving them the support and appreciation necessary for job fulfill-
The findings of this study do not support any selective policy
for resident selection. The range of intellectual, adaptive, and
physical functioning levels is so diverse in the developmentally de-
layed population that it would be extremely difficult to arrive at a
consensus of exactly who will or will not benefit from training. In
addition to basic variables such as intelligence and number of handi-
caps, intangible factors such as willingness to learn and responsive-
ness to structure and contingencies are important in determining a
person's appropriateness for placement in an intensive training pro-
gram. This type of information should be obtained from the resident's
Interdisciplinary Team, which is most familiar with each client's
response to a high-stimulation/demand environment.
It does appear, though, that the most unresponsive to training
are those residents like CJ (see Case Study 9) whose mental retardation
is complicated by psychosis. Persons in this category are frequently
unresponsive to their environment and respond inconsistently, if at
all, to reinforcers and contingencies. Additionally, the intense and
unpredictable nature of their behavior often poses a substantial threat
to the safety of both peers and staff. An intensive training facility
with tight control over the environment can be effective for some
persons whose thought processes are loosely grounded in reality, as
with AB, CD, MN, and RW (see Case Studies 1, 2, 7, and 10) but it can
also exacerbate the situation.
Intellectual or adaptive growth, while important, cannot be the
only criteria for success. Intangible factors also influence client
progress. Social progress will often signal concurrent growth in
formal programming areas and maladaptive behaviors often improve
without formal programming under such conditions, as was the case with
CD, IJ, and KL (see Appendix B, Case Studies 2, 5, and 6). Conversely,
improvement of problematic behaviors often permits training progress,
as happened with EF and GH (see Case Studies 3 and 4). Given the
complex nature of behavior, a holistic approach is necessary to address
each individual's strengths and weaknesses.
The lack of progress of the multiply handicapped profoundly
retarded subjects speaks to the question of "heroic efforts" and the
cost benefit of attempting to train multiply handicapped and un-
responsive persons in traditional areas such as self-care, motor and
basic academic skills (Bailey, 1981). Efforts (and funds) may be
better directed toward "stimulation programming" to prevent regression
rather than toward "teaching programming." Such an approach would
also free some trainers to concentrate on higher-level clients who
have been shown to benefit from such attention and who are not now
receiving the additional training.
Implications for Education
This study demonstrated that moderately, severely, and profoundly
retarded persons respond to an intensive training regimen which employs
basic principles of learning theory. Residents not participating in
the program maintained their level of adaptive functioning in the
absence of special training but showed little overall progress. The
success of non-punishment contingency management in decreasing inap-
propriate behaviors suggests that, with students of normal intelligence
who possess verbal and conceptual skills far advanced over those in
this study, similar behavioral intervention will be effective in lieu
of corporal punishment.
The ICF/MR program operates under strict guidelines which insure
delivery of similar services to all residents. This uniformity serves
a quality control function but can become stifling. As demonstrated
by the case studies, most students benefit from a somewhat individual-
ized instruction approach.
The actual number of available instructors/staff does not neces-
sarily affect learning unless the staff are properly trained and
motivated. Mandating a particular educational approach or adding
more teachers or aides to the classroom may be ineffective unless
measures exist to insure that instruction is being delivered correctly.
In conjunction with accountability and monitoring, care must be taken
to respect instructors' skills and allow them freedom to work.
Limitations of the Present Study
Control subjects were unavailable for the multiply handicapped
profoundly retarded condition since all residents who met these criteria
resided in ICF/MR units. The significance of their limited progresses
was thus difficult to assess but nonetheless suggests that they have
benefitted from the program. Control subjects were available for all
The Vineland Scale of Social Maturity (VSMS) has been criticized
because of its nature as a third-party interview instrument. Although
the VSMS can be criticized for reliability, so can any other standardized
measure of adaptive or intellectual level which is used with a develop-
mentally delayed population. Effects of examiner familiarity, client
health, responsiveness, and problematic behaviors all influence test
results. The VSMS was felt to be an appropriate instrument for this
study because of its administration at Sunland by select and trained
examiners, the specific interpretive criteria which have been
developed for Sunland, and the relative consistency of client scores
from year to year. Although the use of the VSMS has been criticized,
it has also been supported and the interview nature of the instrument
is not seen as more than a very minor limitation.
Suggestions for Additional Research
A review of the literature discloses a paucity of research on
the effectiveness of the Intermediate Care Facility for the Mentally
Retarded program. Reported studies suggest that this expensive national
program has great potential but lacks consistent implementation. Pro-
and anti-deinstitutionalization proponents continue to search for the
one optimum placement for developmentally delayed individuals. This
author's opinion is that a combination of services and placement, both
institutional and community, will probably always be required due to
the extremely diverse population under consideration. The ICF/MR pro-
gram can play an important role in correctly placing these persons.
Even assuming that community placements were without fault, a
patently false hypothesis, 1,015 mentally retarded clients in Florida
alone were waiting for residential placement as of December, 1984, and
many will remain on the waiting list for three or four years before an
opening becomes available ("More Help Needed," 1984, p. 14-A). Additionally,
the Reagan administration has questioned the Pennhurst decision and
argued that "the mentally retarded have no federal right to training
that would develop their capacities to the fullest extent possible and
no right to community living arrangements" and that they are entitled
only to "freedom from unreasonable bodily restraints and to such
training as is required to reduce the need for bodily restraints and
promote physical safety" ("Administration Argues," 1984, p. 5-A).
Empirical evidence is necessary to support policy decisions by
those in positions of authority but current research is often
contradictory. Longitudinal data and objective measures of growth
can provide the necessary information. Several useful instruments
exist to measure environmental and individual characteristics objec-
tively including the Program Analysis of Service Systems (PASS), the
AAMD Adaptive Behavior Scale (ABS), and the 1984 revision of the VSMS.
Conroy (1979) has outlined theoretical dimensions of quality and
operational measures of quantity which may serve as useful research
guidelines. Criteria such as "wariness" are interesting but vague, do
not allow comparisons between studies and institutions, and do not
provide positive guidelines for future placement of and delivery of
services to residents. Personality and mental health characteristics
are important in predicting an individual client's response to training
strategies but must be objectively defined and replicable when used as
data bases for research.
The poor response of some mentally retarded psychotic residents
to ICF/MR placement indicates a need for research in this area. Effec-
tive placement for persons suffering from both mental retardation and
mental illness remains to be established. Is their behavior more
functional in an environment geared toward treating the mentally re-
tarded or the mentally ill? Effective strategies for working with
dually diagnosed persons who are essentially unresponsive to con-
tingencies are badly needed.
Social Age gain for non-ICF/MR Sunland clients during the year
following unitization was not significant. Further follow-up is
needed to determine whether the lack of growth under presumed improved
living and training conditions was temporary and possibly due to
initial adjustment factors, either client or staff, or if the inter-
vention will indeed be effective. If non-ICF/MR subjects' growth
begins to equal that of their ICF/MR counterparts, the argument may be
presented that the expense of ICF/MR is not necessary in order to pro-
vide a healthy environment. It must be remembered, however, that
non-ICF/MR units at Sunland operate under close to ICF/MR standards
and as such are more expensive than traditional custodial units.
Moderately, severely, and profoundly retarded individuals respond
well to intensive training and structure, progressing both in adaptive
skills and appropriate behaviors. The Intermediate Care Facility for
the Mentally Retarded program at Sunland Center, Gainesville, provides
an environment that is capable of producing such growth. Neither
traditional care practices nor improved care after unitization pro-
duced significant progress.
The ICF/MR program is intensive and expensive but is designed to
be an intermediate program step between institutional and community
placement rather than a permanent living arrangement. Instead of con-
tinuing the institutionalization-deinstitutionalization battle,
emphasis should be placed on locating the most appropriate placement
for each individual resident. Attention must be paid to diminishing
transition shock and improving client adjustment to the community (and
community adjustment to the client) so that community placements will
be successful and return to the institution unnecessary. In conjunction
with improved adjustment skills, an adequate number and quality of
community residences must be established so that ICF/MR clients who
have developed appropriate skills can be moved out of the institution.
Such development of resources will utilize the ICF/MR program according
to its goals, will depopulate the institution and reduce crowded
conditions on remaining cottages, and should lower the cost of running
the institution as the census is lowered and fewer support services are
required. In this way, those residents who have adequate functional
skills and behavior for community living will profit from a non-
institutional environment while those residents who continue to require
more intensive treatment for whatever reason, medical, functional, or
behavioral, will remain in the institution.
"Many of the problems that we're called in to treat are the re-
sult of living in pathogenic environments" (Risley, 1982, p. 3). Fac-
tors relevant to client development in an institution include the
amount of day programming, degree of individualized treatment, and
number of (psychotropic) medications prescribed (Conroy & Bradley,
1981). Given the results of the present study, it may be said that
the ICF/MR program at Sunland has greatly modified the traditional
institutional setting to provide a healthy environment and one which
meets Conroy and Bradley's criteria. The "snake pit" has been tamed.
CLARIFICATIONS ON VINELAND SOCIAL MATURITY
Item Number Clarification
4 What behaviors are included in "reaches for familiar
If the client differentiates family from strangers and/or
reacts differently to different staff members, score +;
if not, score -. "Reacting" means initiating a response.
7 Does "occupies self unattended" include self-stimula-
If the self-stimulation is not harmful, score +; if it
requires intervention, score +.
10 Which sounds are included in "imitates sounds"? Are self-
Comm stimulatory sounds, noises, and crying included?
Only sounds with speech-like inflections should be
14 What behaviors indicate "demands personal attention"?
A primary criterion is that the client must initiate the
behavior. In the case of a severely handicapped client,
following staff member with eyes might be sufficient.
18 How is "walks about room unattended" scored for non-
Loc ambulatory clients?
It should be scored + for a client who is wheelchair
mobile; any level of mobility below this is scored -.
22 How liberally is "transfers objects" interpreted?
This cannot be hand-to-hand transfer of objects in a
manipulative manner only; the behavior must indicate
purposeful placement of an object. The placement of a
piece in the form board is scored +.
26 "Gives up baby carriage." How do we score this for a
SHG wheel chair client?
If the client is wheel chair mobile, score +; if he is
partially mobile, score +.
30 Is food on the floor an "edible substance"?
Score + if client does not eat trash, whether or not he
eats food off floor.
33 How do we score "unwraps candy" if client is never given
SHE wrapped candy?
If there is really no opportunity, score NO. If client
peels a banana or opens a bag of chips, score +.
34 "Talks in short sentences."
Speech must be meaningful and must combine at least two
words to be scored +; size of vocabulary is of less
If speech occurs only occasionally and/or only in response
to specific persons, score +.
35 "Asks to go to toilet."
This should be scored strictly according to the VSMS
36 Does "initiates own play activities" include watching and
Occ reacting to TV?
Does it include playing with string or non-toys?
Does it include self-stimulation?
Score + for both active watching of TV and playing with
Score for self-stimulation.
38 "Eats with fork."
This item will have to be scored NO for clients on many
39 Does "gets drink unassisted" include use of water fountain?
SHE Would it include drinking from the commode?
Score unassisted use of water fountain +; score drinking
from commode -.
41 Many of these "simple hazards" do not occur in the Sunland
SHG environment. Would "hazards" include an angry client?
Group Reached no firm conclusions, but felt (1) this did
not include avoiding another client and (2) staying out of
the street is important, but not definitive.
43 How liberally do we score "cuts with scissors"?
If possible, we should give the client a trial with
scissors and/or get a fairly detailed report. On this
item use NO liberally.
45 Should client receive credit for "walks downstairs one
Loc step per tread" without assistance if he uses the stair
In scoring this item, do not count use of railing as
If client is handicapped and can get downstairs alone in
any manner, allow I credit.
46 Must the client know and observe the rules of the game in
Soc order to receive credit for "plays cooperatively at
This item does not include knowing and/or observing rules.
The item is scored + if the game is supervised by an adult.
The item is scored + if the client plays with one other
person in an organized manner.
49 "Performs for others."
To be scored +, the performance must be either carried out
by request and/or be clearly intended for the entertainment
50 "Washes hands unaided."
This item may be scored + if the client requires verbal
reminders and/or cues, but should be scored if he re-
quires physical assistance.
The item does not require that the client adjust the water
51 "Cares for self at toilet."
If the client cares for himself completely in toileting
except for the use of tissue and tissue is not available,
score this item +.
52 "Washes face unassisted."
As in item 50, the item should be scored + if the client
requires verbal reminders and/or cues, but should be
scored if physical assistance is required.
53 "Goes about neighborhood unattended."
If the client goes to any off-cottage activity unattended,
this item is scored +; if he must be observed all the
way, score +.
54 "Dresses self except tying."
Client should receive no credit for this item if he dresses
with slip-on type clothing only; to receive credit, his
dressing skills must include fasteners.
NOTE: If item 47 is -, this item must be -.
56 "Plays competitive exercise games."
Examples of activities at Sunland which should be scored
+ are Special Olympics, kick ball games, and throwing a
basketball with other clients.
57 "Uses skates, sled, wagon."
If item 53 is scored + and the client rides a bicycle or
tricycle around campus, score this item +.
59 "Plays simple table games."
Activities scored + will include card games, table games,
and pool games.
60 "Is trusted with money."
Dir Score this item + if the client can be trusted to take
his own money or someone else's money and buy items at
61 "Goes to school unattended."
This item should be scored + if item 63 is + and the
client goes from one place on campus to another place on
campus three or more blocks distant unattended and
All clients acting as messengers around campus should
receive + score.
62 "Uses table knife for spreading."
If client does not have access to a knife and uses a spoon
for this purpose, score +.
64 "Bathes self assisted."
"Assistance" may be verbal cues, setting water tempera-
To score + client must soap and rinse all body parts with
no physical assistance.
65 "Goes to bed unassisted."
In the Sunland environment, this is scored + if client gets
into his own night clothes without assistance and goes to
his own bed.
67 "Uses table knife for cutting."
This is to be scored + only if item 62 is +.
68 "Disavows literal Santa Calus."
If possible, ask the client if Santa Claus is a real per-
son and score accordingly.
69 "Participates in pre-adolescent play."
To score + on this item, the activity (1) must be client
initiated and/or be carried on without adult leadership,
(2) must involve purposeful activity, and (3) must involve
71 "Uses tools or utensils."
Occ The "tools" may include broom and mop.
The item is scored + only if the client habitually uses
more than one tool.
Client should not receive credit for Sheltered Workshop
activities if he does not use tools in other settings.
72 "Does routine household tasks."
This item is scored + even if the client requires some
If client performs one cottage chore only, allow I credit.
CASE STUDY #1
AB is a twenty-five year old black male who has been diagnosed
autistic. His mental retardation is related to premature delivery
and his IQ, as obtained on the Stanford-Binet Form LM, is 13 (Profound
level of functioning). He has no physical handicaps other than early
cataracts, which do not seem to interfere with his daily functioning.
He has lived at Sunland since the age of eight and was moved to his
present ICF/MR cottage at the age of twenty-one.
AB engages in high levels of self-stimulatory physical activity
and requires a high calorie diet just to maintain his weight. He is
a somewhat picky eater and eats in "patterns," e.g., will eat around
and around the edge of his mashed potatoes until they are consumed.
He ruminates after meals (regurgitates and re-eats his food) but the
duration of each incident is short and thus no dental, medical, or
dietary problems have resulted.
AB is very muscular and fit, undoubtedly due to frequent and
vigorous self-stimulatory rocking and bouncing. He is extremely well
coordinated and, when upset, will sometimes run "full speed" at a wall,
turn 1800 at the last moment and then hit the wall very solidly with
his back. Other autistic behaviors he exhibits include twirling a stick
in front of his eyes, smelling objects, and stretching the bottom
front of his t-shirt so that it will billow in the air as he moves it
up and down. AB has a short attention span when engaged in anything
except self-stimulatory behavior, and does not initiate contact with
AB engages in self-stimulation during most of his unscheduled
time but has also exhibited some more serious behaviors. He previously
urinated and masturbated outdoors but now performs these activities
in more appropriate locations. In February 1983 he began to masturbate
excessively (from 1 1/2 to 5 hours per night). This behavior continued
during the day as well and posed a threat to his well being since he
was sleeping very little. He was referred to psychiatric clinic and
Tofranil was prescribed. The intervention was successful and there
have been no further reports of the behavior occurring excessively.
AB once had frequent, sometimes daily, tantrums but his behavior
has shown great improvement since he and his cottage mates have been
able to eat in their own dining room rather than in the central dining
hall. The central dining hall is noisy and chaotic and AB often became
very agitated, jumped up and down, and bit himself. These behaviors
stopped once he was able to eat in a calmer atmosphere and no longer
had to wait in line to obtain his food. Presently he becomes upset
only about twice per month; some tantrums are attributable to displeasure
with events and others occur for no apparent reason.
Mellaril was prescribed in 1969 to help control AB's behavior
but was discontinued in 1982 when he was diagnosed autistic. The
consulting psychiatrist prescribed Haldol (1 mg twice daily) based on
work which claimed some success treating autistic symptoms using small
doses of Haldol. AB appears to have responded to this regimen and has
become slightly more responsive to staff, sometimes going into the
cottage manager's office to look at magazines. Personal contact remains
infrequent, however, and most interactions or training responses center
around food. He does respond better to staff interruption of his self-
stimulation and will now frequently sit in a chair rather than throwing
a tantrum when told to get up from the floor.
AB has shown fair response to training since his placement in
ICF/MR. He has learned to brush his teeth and his oral hygiene has
shown improvement. Academic goals of pointing to objects and maintaining
eye contact have been unsuccessful, and so he is now working on staying
on task for ten minutes. A goal to sign words has met with mixed
success. The most successful signs for AB have been "eat" and "drink,"
which he emits only to obtain edible reinforcers. He has consistently
met the goal to attend leisure time activities, has made progress in
using cutting, pasting and coloring skills in arts and crafts projects,
and has met the goal to play group ball games. AB has learned to use
appropriate utensils at mealtime, make his bed, blow his nose using
tissue, mop and sweep, and use the washing machine. He is also learning
to take action for self survival by independently exiting the building
during a fire drill when one or more of the exits are blocked.
AB has made good progress since his placement in ICF/MR. His
Social Age dropped from 4.0 in 1980 to 3.3 one year after ICF/MR
placement (see Figure 1) but increased to 5.3 three years later.
Programmatic goals have been refined and tailored to his needs and
he continues to show improvement in spite of autistic symptoms.
Although he remains very withdrawn and primarily engages in self-
stimulatory behavior, AB has become more sociable and his tantrums
have decreased to the point where they are no longer considered a
problem. He lives in a very active cottage and recently became upset
when some other clients were taken to a movie and he was left behind,
a positive sign since he is generally withdrawn and apparently
indifferent to his surroundings.
While the evidence is not conclusive, it does appear that the
1982 medication change from Mellaril to Haldol was of help in improving
AB's interpersonal skills and response to training. His VSMS scores
continue to show a steady increase and the interdisciplinary team has
recommended that he remain in his current Sunland ICF/MR cottage since
he continues to benefit from the placement.
CASE STUDY #2
CD is a thirty-one year old profoundly retarded white male who
has lived at Sunland since the age of seven and was transferred to
ICF/MR in 1980 at the age of twenty-seven. His mental retardation is
associated with autism (childhood schizophrenia), a "mental illness
. . characterized by severe withdrawal and inappropriate response to
external stimulation . and (often) serious impair(ment) in general
intellectual functioning" (Grossman, 1977, p. 124). According to
reports from CD's family, he developed normally until around age 4,
had a large vocabulary, sang numerous nursery rhymes, and attended
regular nursery school until his behavior became unacceptable and
finally necessitated institutionalization. His family has recounted
several possibly traumatic events that occurred during that time of
his life, including a fall on his head and witnessing several puppies
being unintentionally run over by his father and skinned alive. It
is not known what, if any, effect these events had on CD.
CD no longer spoke after his placement at Sunland. His family
feels that he was angry at them for leaving him; it is more probable
that the lack of stimulation at Sunland at that time simply allowed
him to regress. His family is supportive and visits him regularly.
His response to them varies; sometimes he knows them and at other times
he does not seem to.
CD's behavior deteriorated after his placement at Sunland to the
point where he exhibited severe self-abusiveness and aggressiveness.
He has two very large "cauliflower" ears, permanently misshapen from
years of hitting himself. Remarkably, his hearing remains functionally
intact even though neither ear has enough of an opening to permit
examination or irrigation. Physical restraints were frequently required
in earlier years to prevent CD from injuring himself or others, and he
was able even then to bite others.
Restraints were no longer required by the time CD entered the
ICF/MR program but aggression and self-injurious behavior (SIB) remained
frequent. Additionally, he frequently wet his bed and urinated in
public areas. He chewed tobacco or dirty cigarette butts, drooled
tobacco juice and spit it on the floor and furniture. Public mastur-
bation was frequent. Not surprisingly, staff said they were ready to
pack his bags at a moment's notice.
A DRO behavior program was developed which used tobacco, food,
and praise as reinforcers. In addition to behavioral intervention,
CD continued to receive Mellaril and Lithium daily. In 1982, after
two years in an ICF/MR cottage, incidents of self-abuse (face slapping
and head banging) had decreased from an average of 20 per day to only
2 per day. Aggression occurred only once every three days, and was no
longer severe when it did occur.
CD had some dental work done and suffered a severe psychotic
reaction when the dentist gave him Catamine, a tranquilizer. He became
extremely self-abusive and aggressive, and masturbated almost con-
stantly, apparently with great discomfort. It became necessary to
dramatically increase the Mellaril until his behavior could be brought
under control once again. Control was reestablished and by 1983 SIB
had decreased to 3 episodes per week and aggression to one incident
per month. Tearing clothing and inappropriate undressing decreased
to zero, and he learned to masturbate in private. He continued to chew
on cigarette butts but spit them out when requested to do so, especially
at meal times. In 1984 CD's formal behavior program was discontinued
due to the great improvement in his behavior, which then averaged
eight minor incidents of self-abuse per month and only one incident
of aggression in five months.
CD remained basically nonverbal but once surprised a staff member
by clearly asking him something to the effect of "how're you doing
today" and then became silent again. Since his records indicate that
he had once spoken fluently, staff began to require him to ask for
things he wanted, which he did very reluctantly and in a muffled voice.
Attempts to take food from others at meals ceased after he was made
to leave the eating area and not return until he had apologized to the
victim. CD did this, crying tears, and did not snatch food again.
Object permanence appeared to develop as he watched staff members'
coffee during meetings even after they hid it from his view, whereas
previously he would walk away as though it no longer existed. He
also began to emit some spontaneous and clear phrases, often completely
out of context, such as "want some ice cream" and "Africa."
For most of his institutionalized life, CD has been a real "loner"
and concerned only with ensuring his own comfort. In 1982 he began to
respond to a staff member who played with him by chasing him around
the cottage. This was considered to be a positive behavior but increased
to the point where he began to run away from the cottage, searching
for discarded cigarette butts and apparently quite pleased with his
new found ability to control staff behavior by making them chase him.
He has progressed and presently is allowed to go outside by himself,
although staff must still watch him closely and escort him to any
Since his ICF/MR placement in 1980, CD has progressed from an
antisocial, self-abusive, and aggressive individual to a happy and
often sociable young man. He retains the autistic symptoms which
impair his functioning, but he has made remarkable progress. To give
one example, his parents were able to take him out in the car with them
on their last visit, a previously impossible feat due to his extreme
behavior problems and lack of compliance.
CD has made such good progress behaviorally and in his training
programs that he is now able to attend some off-cottage activities.
He continues to be somewhat stubborn and noncompliant but much less
than previously and is clearly benefitting from his training. As a
result of staff efforts to make him name objects before receiving them,
his language receptiveness has progressed to the point where he is now
in formal speech therapy. He has been enrolled in the facility
prevocational program and is doing well, although he still requires
a cottage escort to stay on task. His behavior there is appropriate,
a great improvement from that of last year when he often urinated on
the floor and masturbated during sessions. Sessions address packaging,
assembling, and sorting skills but the formal goals are for on-task
behavior and, hopefully within the year, behavioral improvement so
that he will be able to remain at work without requiring a cottage
escort. In his cottage training, CD is learning to bathe himself
independently, care for his fingernails, make his bed, and identify
himself in a photo. He participates in regularly scheduled arts and
crafts sessions and activities.
CD is a client whose retardation is due to psychosis. He has made
good progress through a combination of formal programming and staff
attention and continues to develop. Many of CD's former skills appear
to remain intact but inaccessible, as evidenced by his occasional lucid
speech and his response to some complex commands. Mellaril and Lithium
continue to be necessary for his daily functioning but it is hoped that
they may be lowered or discontinued in the future.
A review of CD's VSMS scores at Sunland (see Figure 2) shows an
unexplained jump in 1976 from 2.1 to 5.4 years and then a steady decline
until 1981 when the scores began to rise again. Scores fell an average
of .6 from 1976 until his move to ICF/MF in 1980. His social age after
one year in ICF/MR fell again but only dropped .1 and then began the
rapid increase which as yet shows no indication of leveling off.
CD is responding well to training and it is not now known how far
he can, or will, advance. Previous attempts to transfer him to Marianna
Sunland to be nearer to his family have been abandoned since it is
felt that any change in his environment at present would be extremely
detrimental to his development. Programming is very important, but
just as important to his present growth are the cottage environment
and the staff's responses to him. CD has gone from being an unhappy,
self-abusive and aggressive individual to being the cottage "pet."