An Occupational lthough over the past few years occupational

Therapy Program for A therapists have expressed mounting profes-

sional concern about adolescents and adults
with developmental disabilities (Magill & Hurlbut,
Adults With 1986; Moersch, 1982; Warren, 1986), occupational
therapy resources about persons with developmental

Developmental disabilities still focus primarily on children (AOTA,

1984; Hopkins & Smith, 1983; Trombly, 1983) War-

Disabilities ren (1986) called for a clearer definition and commu-

nication of services that occupational therapists have
to offer to adults with developmental disabilities, She
suggests that "more direct intervention from occupa-
Maureen E. Neistadt tional therapists is needed for this population to help
maximize their functioning in activities of daily liv-
ing" (Warren, p. 229). This paper describes an occu-
Key Words: developmental disabilities. pational therapy independent liVing skills program
independent living. services, occupational for adults with developmental disabilities who are liv-
therapy ing in a group home.
A developmental disability may be defined as a
severe chronic disability that is manifest before the
age of 22 years and results in substantial functional
This paper describes an occupational therapy inde- limitations in self-care, independent living skills, mo-
pendent living skills program for adults with devel-
bility, communication, cognition, and perception
opmental disabilities living in group homes. Four
(Massachusetts Developmental Disabilities Council,
clients have partiCipated in this program for 1 year.
Verbal reports from house and workshop staffs and 1985). Diagnoses frequently seen in individuals who
written documentation in the clients' records were have a developmental disability include mental retar-
examined to see if the clients' behaviors changed dation, spina bifida, cerebral palsy, arthrogryposis, ju-
over the COurse of their first year in the program. venile arthritiS, and head trauma. This population has
These reports indicate that the clients have moved a need for lifelong special services to ameliorate the
toward increased independence by showing greater functional effects of their disability and to prevent
initiative in directing their own care. Treatment disability· related medical complications,
issues in group home systems are also discussed. The provision of lifelong special services can dra-
matically interfere with the acquisition of adult life
skills. Whether they have grown up at home or in
residential settings run by state or community agen-
cies, adults with developmental disabilities have
usualJy experienced frequent hospitalizations and/or
periods of institutionalization that have disturbed the
continuity of their family and school relationships
throughout their childhood and adolescence. Fre-
quent disruptions in the educational process can
delay or inhibit the mastery of basic cognitive skills
like reading, writing, arithmetic, and concept forma-
tion. Frequent disruptions in social relationships can
make the learning of basic social skills nearly impossi-
ble. In addition to facing periodic disruptions in their
psychosocial development, persons in this group
also have had difficulties in facing the larger society:
bUildings and transportation systems are often inac-
cessible and people tend to be indifferent or patron-
iZing tOwards them. Consequently, their overall social
position has always been one of dependency. From
this social position, it is very difficu It to master the
Maureen E. Neistadt, MS, OTR/L, is Lecturer, Tufts Univer-
developmental tasks of adolescence-achieving
Sity-Boston School of Occupational Therapy, Medford,
Massachusetts 02155.
emotional independence from parents and other
adUlts, preparing for a consistent, intimate relation-

The Americanjaurnal a/Occupational Therapy 433

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 ship, developing socially responsible behavior, and series of life skills seminars for female patients with
beginning vocational exploration (Havighurst, 1972). chronic psychiatric problems to help them adapt to
It is not difficult, in this sociological milieu, to be- community liVing. Seminar topics included money
come passive, apathetic, and helpless (Egan, 1982; management, personal crises and community re-
Seligman, 1975) Most persons with developmental sources, the job market, and consumerism. Friedlob,
disabilities, then, reach adulthood with developmen- Janis, and Deets-Aron (1986) have documented a
tally based deficits in cognitive skills like abstract halfway house program for persons with long-term
thinking and problem solving and in psychosocial neuropsychiatric disabilities. Their program empha-
skills like initiation and mature social interaction. sized living skills and social skill training to help the
These deficits, superimposed on organically based client make the transition from the hospital to the
ones, seriously interfere with their abilities to assume community. All of the programs listed here have
responsibility for themselves and to follow through helped many or most of the clients who participated
with the performance of self-care and community liv- in them to improve their life skill performance and
ing skills. Consequently, they frequently demonstrate become reintegrated into the community. These pro-
deficits in functional, self-care, and community liVing gram models have been adapted for the group home
skills that cannot solely be explained by their organi- program described below.
cally based limitations. Group homes proVide some special opportuni-
Adults with developmental disabilities residing ties for clients to learn both basic and advanced living
in group homes have generally achieved their maxi- skills. First, the living situation is real. Household
mum physical recovery but have not yet reached the chores do not need to be simulated, they need to be
peak of their functional abilities because of their de- done. Consequently clients can learn skills in a real-
velopmentally based cognitive and psychosocial defi- life environment and will not have to transfer learning
cits. Many occupational therapists have used psy- from abstract simulations to actual situations. This can
choeducationallife skills training programs for adults be very helpful for people who have difficulty with
and adolescents with neurological and psychiatric abstraction.
impairments who have similar functional deficits Secondly, the social structure of the group home
from slightly different etiologies. Versluys (1980) has provides a ready-made peer support network. Clients
offered guidelines for the use of role-focused, inter- can learn and practice ways to interact with others in
active, experiential groups to facilitate the remastery this network in a supportive, constructive fashion.
of adult life skills such as social and communication They can learn to empathize with each other and to
skills for adults with physical disabilities. Lillie and offer emotional and/or physical assistance as needed.
Armstrong (1982) have described a life skills program These social skills are important precursors to net-
for adults with psychiatric disorders. Classes in this working effectively in the community.
program used both didactic and experiential ap- However, group home settings can also make it
proaches to present subjects such as body movement difficult for clients to learn. Staff turnover tends to be
and mechanics, home management, leisure time very high because of low salaries and high burn-out
skills, money management, sexuality, and stress man- rates (Coyne, 1985). Consequently, clients are con-
agement. Howe, Weaver, and Dulay (1981) have de- stantly put under stress by haVing to say goodbye to
scribed a work-oriented day center program for adult people they have come to like and depend on. These
former psychiatric patients who wanted to become high levels of stress can interfere with the clients'
more self-directed and independent in their liVing cognitive processing and learning. On the other hand,
situations. Classes were offered on topics like self- this situation can also force clients to be more self-re-
health care and time management. Teaching methods liant and more assertive in directing their own care.
included individualized instruction, group discus-
sions, field trips, role playing, and presentations by Independent Living Skills Program
guest speakers. Together with K. Marques I have de-
scribed an independent liVing skills training program Overview
in a long-term care facility for adults with neurologi- In December 1984, I began an independent liVing
cal impairments whose diagnoses included cerebral skills occupational therapy program in a Boston area
palsy and spina bifida (1984). This 6-month program group home for adults with developmental disabili-
stressed behaviorally or action-oriented groups within ties. This home is accessible by wheelchair and
an essentially academic framework. The subject mat- houses eight clients, four women and four men (see
ter for daily classes was divided into 12 modules, Table 1 for demographic information). The clients all
which ranged from activities of daily liVing to life attend workshops or other jobs during the day and
planning/advocacy. Mauras-Corsino, Daniewicz, and receive occupational therapy and physical therapy ser-
Swan (1985) have described a community-based vices from private practitioners in the evening.

434 July 1987, Volume 41, Number 7

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 Table 1 creased knowledge of community liVing issues, (b)
Demographics of Clients
increased ability to abstractly explain those issues to
Age, No. of others; (c) increased initiative and assertiveness in
Years Records
Diagnosis Male Female (Mean) Audited
directing their own care within the group home; (d)
increased initiative and assertiveness by directing
Arthrogryposis
(Secondary OX: MR) 0 30 their occupational therapy group; (e) increased inter-
Encephalopathy action with mutual support for each other during
(Secondary OX: MR) 0 31 group sessions. In addition, I used a list of objectives
Cerebral Palsy
(Secondary OX: MR) 3 3 35.3 2 (male) for each topic as a guide for directing each group
session (see Table 3). This list was derived from the
Total 4 4 341 4
program I had developed with Marques (1984), and I
Note. Dx = Diagnosis. MR = Mental Retardation. used it as a list of minimal competencies for indepen-
dent community liVing.
Some examples of short-term (3 months) objec-
My initial review of the clients' records and indi- tives for different clients' individual sessions were as
vidual service plans indicated that all clients had a follows: (a) Client will independently perform self
need for additional functional skills training, particu- range of motion exercises on his or her arms after
larly in the area of advanced activities of daily liVing or verbal reminders from staff three times a week; (b)
independent living skills. Previous occupational ther- client will shave independently after being set up
apy programming had focused on individual treat- with his electric razor, using his left hand to assist; (c)
ment sessions of sensorimotor techniques. Adminis- client will demonstrate independence in using the
trators and staff members at the home were receptive delayed print mode of an electronic, computerized
to the idea of an independent living skills program typewriter; (d) client will be able to count out the
with both group and individual sessions. (The pro- correct amount of money for his week's lunches after
gram's content areas are listed in Table 2.) When the a verbal reminder from his therapist.
idea was proposed to the clients at the site, they, too, In line with the program goals and objectives, the
were enthusiastic. clients were encouraged from the beginning to take
At the beginning of the program, only four clients maximal responsibility for their sessions. During the
had a physician's order for occupational therapy ser- first group session, for instance, the clients were pre-
vices. Later, three other clients requested and re- sented with the overall program content outline (see
ceived occupational therapy referrals from their doc- Table 2) and asked to choose the topic they wanted
tors. Referred clients received both group and indi- covered first. Throughout the course of sessions de-
vidual treatments. The sessions were paid for by voted to any given topic, the clients were asked for
Medicaid. Group sessions were held for 1 hour once a feedback about whether they wanted to have addi-
week; individual sessions were held for 35 minutes tional sessions in that area or to begin a new topic. To
once a week. Attendance at both group and individual help them make this decision, I would present that
sessions was voluntary topic's objectives (see Table 3) and ask the group if
The purpose of both the group and individual they thought they had come sufficiently close to those
sessions was to prepare the clients for more indepen-
dent liVing by helping them to assume more responsi-
bility for their lives. I collaborated with the clients to Table 2
Content Areas of Independent Living Skills Program
set treatment goals and objectives reflective of that
purpose. Goals for both the group and individual ses- Activities of Daily Living Money Management
Adaptive equipmenr
sions were for the clients to (a) improve problem- Body mechanics Personal Care Attendant
solVing skills; (b) improve abstract reasoning abili- Diet and nutrition Management
ties; (c) improve the ability to initiate appropriate ac- Personal hygiene
Wheelchair maintenance Sexuality
tions and verbalizations as needed; (d) improve social
interaction skills. The long-term (2 years and longer) Personal Health Care Housing and Building
Emergency medical help AcceSSibility
objective for both group and individual sessions was Medications
to help the clients progress to more independent liv- Stress managemenr Vocational and
ing situations, namely, to move to their own apart- Educational Issues
Homemaking
ments or to use less staff assistance in their current Basic home maintenance Social and Recreational
situation. Short-term goals were different for group General housekeeping Opportunities
Home safety tips
and individual sessions. Laundry Transportation
The general short-term C3 months) objectives for Meal planning and preparation
Shopping Life Planning/Advocacy
the group were for the clients to develop (a) in-

The American journal of Occupational Therapy 435

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 Table 3
Objectives for Selected Topics
Adaptive equipment Is able to determine need for equipment and knows how to obtain and maintain equipment.
Advocacy Knows functions of various community agencies, is aware of legal rights, knows various
assertiveness techniques.
Housing Knows aboul various types of housing, whom to contaer for housing, and what architec!Ural features
will meet his or her needs.
Meal planning and preparation Is able to plan and prepare a well· balanced meal, make a shopping list of required ingredients,
plan and prepare meals according to budget.
Medications Is able to follow medication regimen and to explain what he or she needs to know about medications.
Money management Is able to budget weekly and monthly incomes, is aware of options like conservatorship.
Personal care attendam Is able to write an ad for, interview, and supervise a personal care attendant.
managemem
Shopping Is able to budget appropriately; is aware of money saving techniques.
Wheelchair maintenance Is able to identify pans, knows where to call for repair services, knows how to maintain wheelchair.
Note. From "An Independent Living Skills Program" by M.E. Neistadt and K. Marques, 1984, Americanjournal a/Occupational Tberapy, 38,
p. 673. Copyright 1984 by the American Occupational Therapy Association. Adapted by permission.

target behaviors. I respected the decision of the group would ask clarifying or leading questions such as
to change topics even if I felt that clients could use "What tool will I need?" or "What should I do first?"
additional time in a particular area. With money man- When clients were unsure about how to use their indi-
agement, for instance, the clients decided to move on vidual session, I reviewed their short-term objectives
to another topic before all of them had achieved the with them and asked them to choose a particular focus
objectives listed in Table 3. However, those clients to work on that day. Individual sessions tended to
who had not reached those objectives later decided to focus on content areas such as activities of daily liVing
work towards them in their individual sessions. (particularly personal hygiene and adaptive equip-
Whenever the group decided to change topics, I ment), personal health care (especially stress man-
asked the clients to choose their next subject from the agement), and money management.
program content outline. I also asked the clients to At the beginning of the program, the four clients
choose a particular learning method for each group receiving individual sessions would usually respond
session. Learning method options included didactic to "What do you want to work on today?" with "I don't
lectures given by me or a guest lecturer, viewing of know." They relied heavily on me to structure choices
audiovisual materials, group discussions, and group for them. However, by the end of the program's first
activities. year, they usually answered my opening question
The content areas that the clients focused on in with definite plans that coincided with their short-
the group included recreation and vocational issues, term objectives.
advocacy, housing and building acceSSibility, and
meal planning and preparation. Their choice of learn-
ing methods shifted from primarily didactic lectures Outcome
at the beginning to cooperative activities such as meal According to verbal and written reports by the house
planning and preparation by the end of the first year. and workshop staff, all of the residents who partici-
In individual sessions, clients were expected to pated, either in group only or in both group and indi-
choose the focus of their session for that day. I began vidual sessions, made improvements in problem
each session with the general question, "What do you solVing and initiation behaviors during the first year of
want to work on today?" That gave the clients an op- this occupational therapy program. Staff members re-
portunity to ask for help with pressing, unanticipated ported that clients had become more independent
problems, for example, wheelchair dysfunctions, that because they were more assertive in making their own
may have arisen during the week. While working on needs known and in directing their own care.
these problems with the clients I encouraged them to Staff members also reported some changes in the
solve their own problems and advocate their needs. clients' interactions with each other. The clients were
For instance, if a client's wheelchair foot pedal more active in helping each other directly and in
needed readjusting, I would ask the client to gUide helping each other get assistance from the staff when
me through the repair process with words or gestures. necessary. The clients were also better able to cooper-
If the client had difficulty giving me instructions, I ate in making group plans and decisions about rou-

436 july 1987, Volume 41, Number 7

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 tines in the house and for outside activities. To further be mentioned. During the last 7 months of the year
examine initiation behaviors, an independent auditor studied, the house manager of the group home was a
and I did a retrospective chart review on the four person who enthusiastically reinforced the program's
clients who had participated in the independent liv- objectives by constantly promoting self-advocacy
ing skills program for an entire year (see Table 1). among the residents. Additionally, the amount of oc-
The occupational therapy progress notes in these cupational therapy time available to the residents
charts contained narrative descriptions of both the during the study year was more than double of what
client's responses within each session and of the had been available during the previous year.
changes the client had undergone since the previous Moreover, given the possibility that the staff and I
session. Each note was examined to determine were biased in our reporting, the changes in the
whether the client displayed initiative during that par- clients' behaviors can only be seen as indications of
ticular session. trends. However, those trends warrant some com-
Initiative was defined as a first step, action, or an ment. The clients' movement toward greater initiative
active role (Morris, 1976). Descriptive phrases that and assertiveness may have resulted not only from
included the words initiative, assertive, or interac- increased staff attention but also from the expecta-
tive were accepted as meeting that definition. The tions inherent in that attention. Both the house man-
chart auditors rated each session as either positive or ager and I expected the clients to assume more re-
negative for initiative behaviors. For every month of sponsibility for their lives. Educational research has
the program's first year, the number of positively rated shown that positive expectations of a teacher or au-
sessions was then divided by the total number of ses- thority figure can markedly influence the perfor-
sions of that type attended by the client during that mance of students (Rosenthal, 1966). Although little
month to obtain a percentage score. These percentage research has been done about the influence of health
scores reveal the proportion of monthly treatment care workers' expectations on their clients' perfor-
sessions in which the client exhibited initiation be- mances, the findings from the field of education are
haviors. An interrater reliability rating of 91.5% was probably directly applicable to health care because
obtained for the audit health care workers usually are seen as authority fig-
Average percentage scores for the first and last 2 ures by their clients (McDaniel, 1976; Schleisinger,
months of the treatment year were compared to de- 1963a, 1963b). Hence occupational therapists work-
termine if the client showed greater initiative by the ing with adults who have developmental disabilities
end of the first year in this program. Figure 1 shows must be careful not to underestimate the abilities of
the individual and composite percentage scores for their clients.
the four clients studied. The changes in group cooperation that indicate a
move tOward social networking are particularly
Discussion meaningful. Research has shown that social networks
Since this independent living skills program was not contribute to general health and well-being by pro-
implemented in a carefully controlled environment, Viding a sense of belonging and practical assistance. A
the changes noted in clients' behaviors cannot solely social network can be the source of information about
be attributed to their 1 year of program experience. health care, jobs, and recreational opportunities as
well as a source of helpers for shopping or other
Two environmental changes in particular deserve to
chores during illnesses or emergencies (Morgan,
Patrick, & Charlton, 1984; "Social ties," 1980; Unger &
Figure 1
Wandersman, 1985). Other research indicates that
Percentage of Group and Individual Sessions During
Which Clients Showed Initiative these networks are effective in overcoming the isola-
tion that many disabled adults experience while liv-
90
80
o First 2
months of year
ing independently in the community (Deuerling,
1986) .
70
60
50 Conclusion
40 [ill] Last 2
Health care experts foresee an increase in demand for
months of year
30 pediatric rehabilitation in the coming decades be-
20 cause of technological breakthroughs that allow more
10 critically ill newborns to live (Shahoda, 1985). Since
O-t-".....,""-r""'~'--r--..:.:l"""'---.-"'"'""""'-r=:.
that same medical technology will assure those new-
Client 1 Client 3 All borns of longer lifespans, occupational therapists can
Client 2 Client 4 expect to see a greater demand for their services from

The American Journal oj Occupational Tberapy 437

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 adults with developmental disabilities in the future. (1985). Competitive employment of persons with develop-
Given the present trend toward community-based mental disabilities. Boston: Author.
Mauras-Corsino, E., Daniewicz, C. V., & Swan, L. C.
health care, we can also expect that a high proportion
(1985). The use of community networks for chronic psychi-
of these services will be delivered in day treatment, atric patients. American journal of Occ upational Therapy,
workshop, and group home settings. The indepen- 39,374-378
dent living skills program described in this paper McDaniel,]. W (1976). Physical disability and human
provides a possible present and future treatment behaVior. New York: Pergamon Press.
Moersch, M. S. (1982) Developmental disabilities-
model for private practitioners working with adults
An ambiguous term. American journal of Occupational
who have developmental disabilities. Therapy, 36,11-115.
Morgan, M., Patrick, D. L., Charlton,]. R. (1984). Social
networks and psychosocial support among disabled people.
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