CALIFORNIA STATE UNIVERSITY, NORTHRIDGE
GATHERING DATA ON A MULTIPLE
DEVELOPMENTALLY DISABLED CHILD
WITHIN AN INTIMATE FAMILY SETTING:
A PARADIGM FOR CONSIDERATION
A Project Submitted in Partial Fulfillment of the
Requirement for the Degree of Master of Arts
in
Education
Educational Psychology
Counseling and Guidance
Specialization in Needs of Persons with a Disability
by
Judith A. Roe, R.N.
January, 1981
of Judith A. Roe is approved:
CALIFORNIA STATE UNIVERSITY, NORTHRIDGE
January, 1981
ii
ACKNOWLEDGMENTS
This project was accomplished with the help and
support of many people.
Grateful appreciation is extended to Stan Charnofsky,
Ed.D., Chairman of my Research Committee for his steadfast belief in my ability to complete this project.
I
wish to thank the members of my committee, Robert
Docter, Ph.D. and Ronald Fairbanks, Ph.D. who supplied
support and motivation for this project.
Special consideration belongs to those who provided
professional consultation, and include Janelle Munn,
M.s.w., Gail Pickering, Ph.D., and Marilyn Armstrong,
Principal, Los Angeles County Special Education Units,
Antelope Valley and her staff fortheirassistance,
This project was conducted in cooperation with the
North Los Angeles County Regional Center for Developmentally Disabled Persons.
I am indebted to Mrs. Carol
Hernandez, M.S.W., and other staff members for their
assistance and support in this endeavor.
A special debt
of gratitude is owed to Thompson J. Kelly, Ed.D.,
Executive Director, for his sensitive concern for this
project and me, in the face of his numerous other responsibilities.
Without his help and support and generous
contribution of time and expertise, this document would
not have been completed.
I recognize my debt to my parents, Mr. and Mrs. William
H. Clay, for their basic contribution of integrity,
determination and understanding and for their support
and encouragement in this undertaking.
A personal and affectionate acknowledgment to my
husband Wayne and my three children; Michelle, Jodie and
Clay Roe.
Without their support, patience, love and
understanding, this project would not have been.
iv
DEDICATION
TO
MICHELLE
My 14 Year Old Daughter
"Your perseverance, determination, success and good
cheer, in the face of apparent insurmountable odds, has
been and will be my inspiration."
v
TABLE OF CONTENTS
ACKNOWLEDGMENTS .....••..•.•................•... , ...... iii
DEDICATION . . . . • . . . . . • . . . " . ., ..• -· . . . . . . . . .
ABSTRACT • • • • • • • • • • • • •
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Vl1.1
Chapter:
I.
INTRODUC'l'ION .....................••....•....... 1
Statement of Need . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Question and Premise of Investigation .....•... 15
Limitations of Study . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Justification of Investigation . . . . . . . . . . . . . . . . 17
Definition of Terms . . . . . . . . . . . . . . . • . . . . . . . . . . . 19
II.
REVIEW OF LITERATURE . . . . . . . . . . . . . • . . . . . . . . . . . . 24
III.
METHODS AND PROCEDURES . . . . . . . . . . . . . . . . . . . . . . . . 29
Selection of Subject Family ........•.......... 33
Subject Family •........•.......... , ..••.....•. 34
Process of Data Collection . . . . . . . . . . . . . . . . . . . . 37
IV.
RESULTS AND RECOMMENDATIONS .......•........... 42
Validity of Investigation • ....•..•......•....• 4 2
Results and Discussion ..........• ~ •......••.•. 43
Recommendations ........................•••.•.• 44
APPENDIX A . . . . . • . . . . . . . . . . . • . . . . . . . . . . . . . . . . . . . . . . 47
vi
APPENDIX B,. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . - ........... 50
APPENDIX C..
~·····································53
APPENDIX D . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 74
vii
ABSTRACT
GATHERING DATA ON A MULTIPLE
DEVELOPMENTALLY DISABLED CHILD
WITHIN AN INTIMATE FAMILY SETTING:
A PARADIGM FOR CONSIDERATION
by
Judith A. Roe, R.N.
Master of Arts in Education,
Department of Educational Psychology
Counseling and Guidance
Specialization in Needs of Persons with a Disability
January, 1981
A single family study was conducted to explore the
feasibility of assessing the skills of a multiple,
developmentally disabled child within an intimate, unstructured, casual family setting.
The skills that were
assessed were learned within a structured classroom program environment.
The project was conducted with the
coo~
eration of the North Los Angeles County Regional Center for
Developmentally Disabled Persons.
viii
Review of the pertinent
research literature showed a lack of "in-family"data
gathering, so a single family sample was used.
Observa-
tion and checklist with taping of same were the methods
chosen to gather data for this project.
The home visit observations and lack of prior
studies in this environment, required the development of
an appropriate checklist tool.
this project included:
(a)
The skills observed during
self-help,
(b)
actions with family members and peer group,
social inter(c) communi-
cation skills both receptive and expressive, and (d)
general knowledge skills.
An analysis of the results of the project with the
skill assessment in the special education program showed
that, in every instance the Subject Child spontaneously
performed within the family unit the program-learned
skills.
The analysis further showed that of the 54
separate learned skills observed, 40 were spontaneously
performed four to five times out of five times observed;
13 learned skills were spontaneously perfonned three times
out of five times observed and one skill was spontaneously
performed one to two times out of five times observed.
Based on information gained during the project it was
concluded that the project was of value in the total data
_gathering process.
The project demonstrated the
feasibility for gathering information in a previously unexplored enviornment.
The project provideJd !)bjective data
ix
for viable feedback to case managers and family members
regarding the practical assimilation of the programlearned skills by the child with special needs.
Suggestions for further study include refinement of
the checklist tool and some modification of the time-table
for the data gathering.
X
Chapter l
INTRODUCTION
Persons with special developmental needs, including
but not limited to mental retardation, epilepsy, autism
and cerebral palsy, are currently in a state of "becoming"
and merging in contempory society.
This phenomenon is
largely a 20th Century movement and has slowly grown,
in an ad hoc fashion, from a combination of individual,
charitable group and public agency efforts to establish
a more normalizing ecology than has been available to
handicapped persons in the past.
In the school-age population, the United States Department of Health, Education and Welfare (1974) has
estimated that there are approximately six million handicapped children in the United States.
In California, a
state with 23 million people, approximately equivalent 1n
population to the country of Canada, the estimates of
developmental disabilities including preschool and adult
handicapped persons, have been in excess of
one-h~lf.
million persons.
Federal laws (Developmentally Disabled Assistance
and Bill of Rights, 1977) and California laws (California
Education Codes, 1978, California Welfare and Institutions
Codes, 1980) have established rights, support systems and
1
2
funding that emphasize community day and residential programs tpat closely parallel the "normal 11 living environment
that we as non-handicapped people take for granted.
Al-
though it is not immediately relevant to this thesis, a
similar set of issues and problems concern persons identified as mentally ill and those with a dual diagnosis,
developmentally disabled/mental illness.
It has been stated by the Department of Health,
Education and Welfare,
(1974) that any disability that can
occur alone, can occur with another handicap and does so in
approximately 75% of the known cases.
Regardless of the
method of projecting the number of handicapped persons,
there is a significant population of multiple-handicapped
persons, even though the exact number is not known.
These
conditions include, but are not limited to, physical
handicap/mental retardation, communication disorders/mental
retardation, deaf/blind,
(Shelley, 1957; Freedman, 1976).
For the purpose of this investigation, the term
"person with special needs" will be used to refer to persons with mental retardation, cerebral palsy, epilepsy,
autism, other conditions similar to mental retardation
that require treatment similar to that required by mentally
retarded individuals, and shall constitute a substantial
handicap.
A substantial handicap means a condition of
sufficient impairment to require interdisciplinary planning
and coordination of special or generic services to assist
3
the individual in achieving maximum potential (see
Appendix D).
It is important to note that when two or more
disabilities occur in combination, the effect is usually
greater than the sum of the two.
This synergistic effect
is the result of each disability and their interaction
one upon the other (Costello, 1960; Holt, 1960).
The movement brought forward into the 1980's for
persons with special needs and the availability of the
least restrictive community opportunities has become the
paramount issue in developing services for our handicapped
population.
The battle lines are drawn between insti-
tutionalization versus normalization, and the magnitude
of the task at hand is awesome (Holt, 1960; Dick, 1964;
Falck, 1966; Adams, 1968; Wolfensberger, 1972; Richmond,
1973; Anderson, 1976).
In California, in 1975, Assemblyman Frank D.
Lanterman authored the most recent comprehensive legislation with mandated dramatic changes in the concept and
reality of serving people with developmental special
needs (California Welfare and Institutions Code, Section
4500 et sec, 1980).
Lanter~an
This legislation known as the
Developmental Disability Act of 1976, included
ten sections and described the California Regional Center,
the major agency identified to provide community services
of both day and residential programming.
4
The Regional Center's major role, in cooperation with
the family, is the development of the Individual Program
Plan (IPP) that defines the goals, activities and
objectives that will assist each client to realize his/
her maximum potential.
In California's Regional Center
system, the diagnostic and evaluation procedures establish
the foundation for this planning process.
Upon completion
of the assessment and establishment of eligibility, an
Individual Program Plan is developed and continually
monitored to meet the changing needs of each individual
throughout his/her lifetime, with advocacy a central
part of all services.
Services the Regional Center may
coordinate include, but are not limited to:
Infant development programs
Pre-school programs
Recreation programs, including day and
residential camp
Work activity center, workshop and
independent living training programs
Family respite services
Residential placement services
State hospitalization: admission,
monitoring and discharge planning
Genetic counseling and testing
Legal intervention for developmentally
disabled alleged offenders
Advocacy
5
If there are no public funded or generic resources or
services for which the client is eligible, the Regional
Center may purchase appropriate services from approved
vendors.
Periodically, evaluations are made of the
effectiveness of all services provided for Regional
Center clients.
Where services are non-existent or in-
sufficient, the Center's Community Development Services
department actively recruits and initiates the creation
and/or expansion of necessary resources, within the
community.
Regional Center residential and program
specialists are available for resource development consultation.
Much of this work is done in the community,
working with existing programs both day and residential,
to expand and/or up-grade the programs offered by an
existing facility.
They bring the necessary expertise
and funding sources together to initiate a need-identified
program, and to act as on-going consultants, whenever
necessary (California Welfare and Institutions Code, 1980).
In California, there are currently 21 Regional Centers
with branch offices established according to population
and geography.
The intent behind this network of centers
is that no developmentally disabled person and/or their
family need travel more than one hour to initiate services.
The Regional Center system is funded entirely from the
general fund of the State of California.
As an adjunct and a contitlUum of the
phllo~ophy
of
6
normalization, Public Law 94-142
(1977) was enacted.
This
legislation mandated that every child in the United States
has the right to a free, appropriate, public education,
carried out in the least restrictive environment.
The
California Education Code states that all individuals
with exceptional needs have a right to participate in
appropriate programs of publicly supported education.
Special education programs and services for these persons
are needed to assure them of this right to an appropriate
educational opportunity (California Education Code, 1978).
In 1978, the California Department of Public Education estimated that about 12% of the students then enrolled in public schools had special educational needs.
This estimate, however did not address the significant
n1~bers
of school-age children, enrolled in private
schools, special education programs in state hospitals,
or inappropriately placed students in county administered
Special Education facilities, away from the mainstream of
their peers.
The number of students with educational
special needs were much higher than the estimated
12~
When
the above listed situations were included, a more apt
projection might have been eloser to 18%.
The California Education Code of 1978 mandated the
dramatic change away from the isolation and segregatiOh
of the student with special naads, and idsntified the
public school system as the appropriate source of the
7
following services:
Free programs for students between the ages
of four years, nine months and 18 to 21
years of age, who have:
Ccmununic&tion problems, to include
language, speeeh and hearing deficits;
Physical disabilities, to inelude, but
not limited to vision and mobility;
Learning problems, to include visual
perception, visual motor disorders,
behavior disorders, educational
retardation;
Severe handicaps, to include developmental
disabilities, trainable mentally retarded,
autistic, seriously emotionally disturbed.
Involvement of parents/guardians in the
child's educational needs assessment and
development of his/her Individual Education
Plan (IEP).
Services available at the school according
to each child's needs would include:
Special trained resource teachers to
assist the child in overcoming his/her
special problems in the classroom;
Short term special heeds, due to injury
or illness, would be met with special
instructions at home or hospital by
teleclass;
Extreme cases may require attendance at
a specially designed school, with
personnel trained to meet each
student's special needs.
For all handicapped students, an Individual Education
8
Plan (IEP) must be developed.
This will result in fre-
quent and on-going assessment and evaluation to reflect
the changing student needs, with the over-all goals of
movement toward a lesser restrictive environment for the
student.
The Individual Education Plan (IEP) will be
re-assessed on an annual basis and include parent or
guardian input.
Not only are these educational rights
mandated by law, but the laws also provide state funds
to local community school districts and agencies that
qualify to meet the directive of these laws.
On-going
funding is dependent upon the implementation of each
student's Individual Education Plan (IEP).
To insure
these rights of each student, there is a protocol of
grievance procedures, that must be made available and
accessible to each parent/guardian at the time that IEP
is approved.
This avenue is always open should there
be a breakdown in agreement between the school personnel
and the parents/guardian, or a disagreement as to the
special need of the individual child (California Education
Code , 19 7 8) .
The concept that a person with special needs is an
individual who has legal rights is a 180 degree turn
from prior methods and perceptions of the handicapped,
even in the recent past.
Only in the last 20 years have
the basic human rights of person with special needs been
identified; these same rights that the general public
9
takes for granted.
The American Association on Mental
Deficiency (1968) published an official document proclaiming the rights of mentally retarded persons.
This
document sets forth the following 11 basic human rights
for persons with mental handicaps.
Specifically these
rights are:
(1)
To exert the freedom of choice in
making decisions;
(2)
To live in the least restrictive
environment;
(3)
To obtain gainful employment, expect
and receive fair pay;
(4)
To be part of a family;
(5)
To marry and have a family;
(6)
To be free to move about without
deprivation of liberty by
institutionalization;
(7)
To speak openly;
(8)
To maintain privacy;
{9)
To practice religion;
(10)
To interact with peers, to include
both sexes;
{11)
To receive public-supported education,
vocational training, habilitation and
rehabilitation.
This official publication on the part of the American
Association on Mental Deficiency was not just an empty
gesture.
The reality was that these basic rights, which
we all believe are guaranteed by the United
St~tes
Constitution, were not even considered for the person with
10
a mental handicap, and for much of the time, for the
person with a limiting physical handicap, as well.
In
the past there was little or no individual choice available to families as to where or how their developmentally
disabled offspring would live.
In addition, most
apartments are not accessible to persons with limiting
physical disabilities.
Because of the above, thousands
of people with special needs were forced to live in near
total isolation in state hospital systems or in private,
usually secluded, large residential institutions (Adams,
1968).
Once placed in these facilities, the handicapped
were largely forgotten by society and unfortunately
in many cases by their families.
Seldom, if ever, could
they leave the facility's grounds for any reason, except
for emergency medical care.
When the resident's family
members died or moved away, the resident's isolation
became near total.
The rationale at that time was that
the mentally handicapped could not learn, so why try
to teach them anything.
They were considered to be as
children for their entire life, wh0 needed to be protected
frqm the world, and from themselves (Miller, 1969).
Since
the general opinion was that parsons with spaaial needs
could not cope or make decisions, they should be put away
with their "own kind", where they would be "happy" 1
taken care of.
Sometimes
ft:ttnili~m
ffil'!.d.
of pet"SO!i!!! with special
needs, for reasons of their own, chose another
alternativ~
11
A family member would voluntarily or involuntarily
~aqrifice
their own life-style tQ care for the family
member with special needs.
Often two lives were then
spent in near imolQtion, with li~tle contact in the
neighborhood or community.
It was believed that people
with special needs could not be taught, trusted, or
able to make decisions, thus they must have constant
supervision.
This restriction put a severe strain on
personal privacy for the person with special needs.
Early
in their lives, people with special needs were frequently
isolated from their peer group because of their low
social skills.
The concept of sexuality was completely
denied or avoided because people with special needs
could not feel or relate like
11
normal" people.
They
could not possibly fall in love or need to be loved like
"normal" people n•7olfensberger, 1972).
People with
special needs would experiment and get into trouble.
Someone outside of the family, and sometimes even a
family member, who didn't understand the situation would
take advantage of them (Falck# 1966).
People with special
needs were often valued at about the same status as the
family pet or "village idiot".
It was not unusual for
a family to have their special need member sterilized,
often on the advice of a well-meaning professional.
Thousands upon thousands of persons with special needs
have spent most of their lives locked away from society,
12
not touching or being touched in love, rarely owning
material goods, being taught little or nothing and being
fed and diapered most of their lives.
These special
people seldom saw a movie, threw a ball, chewed a piece
of gum, smelled a flower or petted a puppy.
People with
special needs rarely chose a pair of shoes, made a
friend, or bought a pencil.
They sat and stared at little
or nothing their entire lives.
That was all there was
(Wolfensberger, 1972).
Today's focus is on the individual, that individual's
strengths and weaknesses, and the development of hwnan
potential in programs provided in the least restrictive
environment, has demanded a totally new approach to the
delivery of services to people with special needs.
Changes have begun for some persons with special needs
in the legally-mandated access to free public education;
the initiation of segments of a continuum-of..,.living
program plan and the identification and development of
activity, workshop and work-training programs.
In
addition, the recognition and development of socialization programs with the peer group, to include both
sexes, is beginning.
Agencies and programs are now
being challenged to identify and develop planl
~6
meet
the individual needs of the clients that they serve,
rather than a fitting of the clients into an existirt§
program.
The goals of such
ch~nges a~e
to develop where
13
possible, better trained, knowledgeable, socially-skilled
people with special needs, who have the capacity, ability
and opportunity to make decisions.
They should be able
to productively occupy their leisure time and to seek
gainful employment,
appropriate)~
(to include workshops, when
They should have the opportunity to inter-
act socially with their peers, who may or may not be
disabled, form meaningful relationships with others and
provide for their own needs within the limit of their
ability.
When, because of profound individual limitations
the preceding goals cannot be met, then the least
restrictive and humane ecology must be provided.
At the
present time, the best model for the above system exists
in the country of Sweden.
The comprehensive results, in addition to those previously mentioned, are people with special needs who are
able to reach much higher achievement and functioning
levels.
They have greater self-awareness and self-esteem
and they 6an become, to the limit of their individual ability, contributing and responsible members of the community
in which they live and work
(Bu~oaglia,
1975).
Statement of Need
As has been discussed, programs are currently being
focused on the individual's needs with services being
provided in the community.
Many resources have been
14
initiated and many more remain to be developed at the
community level.
Tools and measurements aimed at
assessment of the individual's strengths and weaknesses
within the remedial program, have been developed.
As
we have already discussed, the family unit must also
provide the support system for their disabled member
(Allen, 1938; Ehlers, 1966; Falck, 1966).
At some point
the question must be asked, "What happens to the person
with special needs when he/she is outside of the remedial
program in respect to the skills that he/she has learned?
For the youthful members of this group, what happens
within the intimate, safe, unstructured family unit?
Are
these program-learned skills used, applied, adapted,
assimilated by the child with special needs?"
There has seldom
been any question, nor should
there be one, regarding diagnostic and remedial program
evaluation being performed by trained technicians.
How-
ever, it appears that we have overlooked a critical
influence on the child with special needs, the family.
It is within the family unit that the skills learned
within the remedial program are used in daily living
situations and become an integral part of the child with
special needs.
From all indications available there is
little or no evidence to document the role of th@ family
as active team members and participants in the on-going
15
evalution and remediation of their family members with
special needs.
There is some research to suggest the
value of the total involvement of the family in the program of their member with special needs (Barsch, 1968;
Adamson, 1972; Buscaglia, 1975; Abrams, 1977; Brown, 1978).
Question and Premise of Investigation
This investigation will address the question:
"Is
is possible to gather valid data on a multiple developmentally disabled child, within an intimate family setting,
concerning functioning levels of skills learned within the
remedial public school program?"
This investigation will explore the following four
issues:
1)
What should the nature of the evaluation be?
2)
What areas of skills learned within the
public school program will be evaluated?
3)
How will the data collected in this
investigation be evaluated for validity?
4)
What are the limits of this investigation?
Based on the above questions, the following hypotheses formulate the premise of this investigation:
1)
The public school's remedial program
evaluation will determine which skills
this child has learned within that
program.
The skills that will be
investigated in this project will
16
be selected from this list of skills.
2)
The n&ture of the family environment is
spontaneous and less structured than
the public school remedial program.
This investigation will be conducted
within the family environment.
3)
The v&lidity of this investigation will
be tested by the comparison of the
results of this investigation with
the public school's remedial program
skills assessment of the same skill.
4)
Any invasion of -the intimate family unit
brings some limit to the spontaneity
of its interactions.
The author will
make a statement on how this interfamily invasion
influenca~
the results
of this study.
Limitations of the Study
It is important to identify a primary motivating
force for this investigation, as this force is respon~i­
ble for a limit to this study, that is objaotivity.
It
must be stated that the investigator is, herself, a
parent of three minor children, the oldest child
multiple, qevelopmentally dimablad.
~~
EVGt'Y opportunity
was exercised to err on the side of objectivity.
We
17
must recognize the fact that the nature of this investigation carries with it intrisically, an element of
emotion that was impossible to eliminate.
This investigation was further limited by the sample
of one family.
The problem of utilizing a larger sample
group was beyond the scope of this initial project.
The concept of invasion of a private, intimate unit
and the control that this placed on the spontaneous
interactions must be identified.
The author feels, at
least in this case, this limit must be given a minimum
weight value.
Without denial of the presence of an
outsider within the intimate family unit, the author
believes every opportunity was exercised to minimize
this influence.
This investigation was undertaken without the
groundwork of previous studies in this area within this
social group.
Some literary sources cited the value of
study of this particular group, but no example of such
in-family assessment could be found in the
literatur~.
Justification of -~nve_s!,:jsJ!ti;~}l
Repeatedly assumed, it has been researched, documented and reported that a family environment is the
optimum learning laboratory for our children
(Barach,
1968; Cain, 1976; Ooley, 1976; Abrams, 1977; Edminster,
1977; Brown, 1978).
It is here that the social
18
interactions, developmental skills and merging personality
traits are spontaneously developed in loving, accepting
surroundings.
This intimate environment is rich with
developing personalities and budding interaction skills.
It is here that the investigation, exploration and adaption of skills learned within the remedial program of the
child become a
practical reality.
More learning occurs in
the first three years of life than at any other three-year
period in our entire lives (Love, 1973; Brown, 1978).
When a child's special needs are identified, a public
school remedial program should be initiated.
The first
step in problem definition is to clearly perceive and
describe that problem(s) by means of
assessment.
evalu~tion
and
A similar process occurs at regular intervals
throughout the remedial program.
By law, such surveys
must occur at least annually (West's Annotated California
Codes, Education Section, 1978; Welfare and Institutions
Section, 1980).
These evaluations are the basis for the
development of on-going programming based on the needs
of this individual.
According to teachers of special
programs and therapists in remedial programs, the f.act is
that this evaluation is going on almost daily as the
individual with special needs moves through his/her
identified program.
As has been
discuss~d
earlier, the
goal of the Regional Center case manager is to bring all
·the existing information toqether and
incorpo~at~
the
19
pertinent data into an IMdividual Program Plan (IPP) to
meet specific needs of the individual, both long and
short range.
This IPP is developed each year by the
case maftager with data being gathered just prior to its
development.
The individual's strengths, weaknesses
and changes in status are critical considerations to the
development of such a docwnent.
When this data has
been evaluated and areas of need and growth have been
identified, the IPP is put together.
The objective of
such a process is to take a comprehensive look a·t just
where this person is in terms of development, progress
and need at this moment in time.
Definition of Terms
To better understand the language used in this
project, the author offers the following list of words
and phrases and their definitions, which are specific
to this project:
Ad-Hoc - Unique to this situation.
Advocacy - To plead a cause; to speak or write in
favor of.
Becoming - The dynamic s·tate of change and growth
when this growth is assimilated into and becomes an integral part of the whole.
Developmental Disability - See Appendix D.
Ecol?YY - The study of human populations in terms of
physical environment, spatial distribution and
20
21
M. - Symbol to iqentify the mother of the subject
family unit in this project.
Normalization - Philosophy of insuring human dignity
and reasonable risk to persons with a disability.
This assurance promotes individual growth and
development to produce the ability to function
within the community as a part of the community,
to the limit of the individual's ability and
supports maximum development of each person's
potential.
O.D. - Symbol that refers to the older daughter in
the subject family unit in this project.
O.M.H. - Other multiple handicaps is a special
education classroom designation for children
with more than one major developmental disability.
The teacher/student ratio is usually
1:6, with a classroom aide.
o.s. -
Symbol used to refer to the older son in the
subject family unit, in this project.
Outsider - Used in the context of this project, it
refers to the investigator, a non-family member,
being present within the intimate family unit.
The presence of an "outsid!3f'" \vill change, to
varying degrees, the natural interactions between family members.
22
· Per1ons (Child) With Spec~al Needs - This phrase is
used in the context of this project to refer
to anyone with a disability(ies) severe enough
to prevent him/her from benefiting from traditional service delivery systems in the
oommunity.
Protocol - A prescribed method of ptocedure, usually
identified in steps to
follo~
to achieve a
specific goals.
Respite - An interval of rest.
The provision of
trained respite care workers for families with
a multiple, developmentally disabled child,
allows the parents to seek a much needed rest
from the demanding daily routine.
An essential
element to keeping these children in their
natural family home.
S.C. - Symbol that refers to the multiple, developmentally disabled child in the subject family
in this project.
S.F. - Symbol that refers to the subject family in
this project.
Synergistic - The joint action of different substances (disabilities) in producing an effect
greater than the sum of the effects of all the
substances (disabilities) acting separately.
23
Valid - Based on evidence that can be supported.
Vendors - Agencies and/or individuals who provide
services to people with special needs.
Vendors
must be approved by the State of California,
Department of Developmental Disabilities for
Regional Center funding.
24
Chapter 2
REVIEW OF LITERATURE
As a result of the Lanterman Developmental Disability
Act of 1976 and its dramatic impact on the service delivery 1ystem in the State of California, the emphasis
on meeting the needs of a developmentally disabled minor
child now returns to the natural family home or
community whenever possible.
Studies described by
Schwartz (1971) indicate that disabled children do have
an influence on parental emotions, response and attitude.
The disabled child's handicap often becomes the focus
of other emotional tensions in the parent-child relatiortship.
It is important to note (1) the current emphasis on
the disabled child remaining in the natural family unit
(Wolfensberger, 1972) ,. and (2) the high incidence of
multiplicity of disabilities and their effect on the
family unit.
When more than one major problem exists,
it is essential for the parents to understand each of the
disabilities; the interactions of one disability upon
the other and the pervasive synergistic effect of the
total on the child, on the family and their social
interactions.
Parents must constantly try to understand
"where their child is'' in relationship to these disabilities.
Families with a mtiltiple. developmentally
25
disabled child need access to special support resources
to help them to adequately and appropriately meet the
needs of their child and of all the family members
(Costello, 1960; Holt, 1960).
There is a natural,
indomitable spirit, a fo:cce for positive growth in most
children.
defects.
This can makeup for "outside" environmental
There is a great need to create an atmosphere
to nuture and promote these qualities within the family
unit (Cohen, 1966).
When we study the disabled child living in the
natural family, care must be taken to remember that the
family unit is only as healthy as the individual members.
Little direct study has been conducted regarding the role
of siblings, related to disabled children in the family.
There is some evidence of sibling resentment based on
the sibling's perception, that the disabled member is
more loved.
Some behavioral expression of this resent-
ment can be demonstrated in inappropriate teasing,
conscious physical attacks, refusing to play with and
sometimes embarrassing the handicapped child among the
sibling's peers (Barsch, l96B).
Other research shows
that siblings of disabled children
demonstrate a sense
of pride when they are involved in working with the
disabled member, and feel a sense of being part of the
growth and development of the handicapped child (Miller,
1974).
26
Service delivery systems in their focus on the needs
of their severely handicapped client, often tend to
over~
look the necessity and value of strengthening their client1s natural bulwark -- the family.
Researchers have
shown that the adjustment to a severely disabled family
des~
member frequently parallels the five stages of grief
cribed by Kubler-Rossin her
boo~On
Death and Dying
(1975~
Books and informative ma·terial have been written
to tell parents how to manage and teach their disabled
child, and sometimes tell parents what they might expect
from their handicapped offspring.
Much of this
information is presented in handbook format,
presentation and use.
for ease of
The material available is usually
quite general, such as definitions and descriptions of
developmental handicaps.
In some of this literature,
there are discussions presented of parental feelings,
adjustment and parental behaviors.
Occasionally they
deal with the importance of the role of the father in
the family (Kirk, 1955; Egg, 1964; Isaacson, 1974).
Parents and teachers write to share their experiences
of living and working with children with special needs to:
1)
advocate for humanistic remedial
habilitation and rehabilitation programs;
2)
help other families with special needs
to cope with the daily living problems in similar
situations; and,
27
3)
realities of
special needs
create an awareness in society of the
living, day-to-day with a child having
(Seagoe, 1964; Ramah, 1971; White, 1972;
Roberts; 1974).
ad~
Studies have been conducted on the psychological
aptation process of the family and the child with special
needs and the role of denial, guilt, dependency and
projection in the acceptance of these most difficult
situations (Richmond, 1973).
We learn that it is important to provide the child
with special needs with an equal share in the
responsibilities, privileges, experiences in living, and
giving to others in an integrated family unit.
There
should be a concerted emphasis on the disabled child 1 s
strengths and as near-normal a family life as is possible
should be maintained (Derse, 1950).
Research shows
that an effort must be made to prepare the child with
special needs for new experiences.
However, parents
are strongly cautioned regarding over-protection, which
greatly limits this child's experiential learning and the
deve1opment of his/her potential (Rosenthal, 1966).
There
is a value and importance in teaching the handicapped
child kindness and thoughtfulness in their everyday
life~
The reality of the situation appears to be that
often the child with special needs is the natural receiver
of good-natured and accommodating behavior.
Disabled
'
28
chiidren need
opportunities to practice these social
behavio+Ff with themtlHi:il v~s as the giver as a normal part
of their life experience (Misbach, 1953}.
There is research to support the concept that the
family •hould be an active, involved, viable part of the
assessment and remediation team.
Properly prepared
parents can serve most successfully in the role as an
active team member.
The bedrock foundation upon which
all future learning is built, {social, cognitive,
emotional and developmental), is laid in the intimate
family interactions of the child with special needs.
The
parent's role is enhanced because of their natural relationship, interest in and concern for the welfare of
their child with special needs.
Parents, out of
necessit~
have many times become quite skilled in adapting everyday
experiences and equipment to better meet the needs of
their child with special needs (Adams, 1968; Browr, 1978).
The comprehensive, and yet partially undeveloped role
of the parents as team members, is researched and
discussed in depth in Buscaglia's The Disabled And Their
Parents: A Counseling Challenge (1975).
'
29
Chapter 3
MET.tiODS AND PROCEDURES
The goal of this project is to determine if it is
possible to gather valid data on a child with special
needs within
~n
intimate family setting.
The skills
that were chosen for evaluation were assessed learned
skills identified within special education programs
that the child is currently attending.
Comparison of
the results of this study with the results of the program
evaluations of the skills selected for study, will give
a basis for the validity of this investigation.
The
method of assessment will be accomplished by means of
observations and checklist with cassette tape recordings
made of each data collection session.
The checklist
method of gathering data was selected as it is the least
invasive of the possible choices for use within the intimate family sc::tting.
'l'he checklist was developed from a
list of ten instruments collected and reviewed by the
investigator.
'l'he following is the .list of instruments
that were reviewed for poss1ble use:
1)
Brigance Diagnostic Inventory of Early
Development, A.B. Brigance, Curriculum
Association Incorporated, Woburn,
Massachusetts, 1978.
30
2)
Behavior Development Survey, University
of California, Los Angeles 1 Neuropsychiatric Institute, Research Group
at Lanterman State Hospital (formerlY
Pacific State Hospital), Pomona,
California, 1978.
3)
Combined San Juan Infant-Toddler Master
Progression Chart and Downs Syndrome
Inventory, Infant-Toddler Development
Center, California State University,
Dominguez Hills, California.
4)
A Catalogue of Instructional Objectives
for Trainable Mentally Retarded Students, R.D. Turlington, Commissioner,
Department of Education, Tallahassee,
Florida.
5)
Inventory of Developmental Tasks:
Prescription Book, F.D. Hazen and
D.A. Howard, Kings County Superintendent of Schools, Curriculum Services
Departmen~
6)
Hanford, California, 1975.
The Bzoch-League Receptive-Expressive
Emergent Language Scale for the
Measurement of Language Ski11s in
Infancy, K.R. Bzoch, Ph.b. and R.
League, Ph.D. 1975.
31
7)
Inventory of Home situation Data Sheet,
J. Howard, M.N., North Los Angeles
County Regional Center for Developmentally Disabled Persons, Van Nuys,
California.
8)
CARE, A Special Education Curriculum,
L.A. Prochaska, Ed.D. Editor, Los
Angeles County Superintendent of
Schools, Division of Special Education,
Los Angeles, California, 1974.
9)
Developmental Programming for Infants
and Young Children, Volume I, S.J.
Rogers and b.B. D'Eugenio, University
of Michigan, Ann Arbor, Michigan, 1977.
10)
Fairview Social Skills Scale for
Mildl~
and Moderately Retarded, R.T.
Ross, Ph.D. and J.S. Giampiccolo, Jr.,
Fairview State Hospital, Fairview,
California, 1972.
After a review of the above list of instruments, the
following tools were used to develop the checklist that
was needed to study the skills that were learned in the
public school, special education program of the child
with special needs:
1)
Brigance Diagnostic Inventory of Early
Development, A.H. Brigance, Curriculum
32
Association, Incorporated, Woburn,
Massachusetts, 1978.
2}
CARE, A Special Education Curriculum,
L.A. Prochaska, Ed.D., Editor, Los
Angeles County Superintendent of
Schools, Division of Special Education,
Los Angeles, California, 1974.
3}
Fairview Social Skills Scale for Mildly
and Moderately Retarded, R.T. Ross,
Ph.D. and J.S. Giampiccolo, Jr.,
Fairview State Hospital, Fairview,
California, 1972.
The criteria applied to the selection were:
1)
ease of use, and
2)
closely configured to the classroom
curriculum.
This allowed the investi-
gator a wide range of choices available
from the identified, learned, assessed
skills, within the public school,
special education program.
The cassette tape recorder used
for
the sessions,
was a General Electric ALC compact, measuring 5-1/2 x
2-3/4 inches, and operated on batteries.
This allowed
the investigator to place the recorder as inconspicuously
as possible, in the center of the family activity.
The
cassette tapes chosen were Craig cassette C-120, which
33
allowed for a complete hour of taping on each side of
the tape.
This permitted as little interruption as
possible of the intimate family interactions.
Selection of Subject FamilX
The project idea statement was piesented for agency
approval to Ronald Fairbanks, Ph.D., Chief of Psychological Services and Chairman of the Research Committee of
the North Los Angeles County Regional Center for
Developmentally Disabled Persons.
After approval, a
client program manager (Regional Center counselor} from
a branch office of the North Los Angeles County Regional
Center was contacted and briefed.
solicited and obtained.
Her cooperation was
The Regional Center counselor
was informed as to the project's requirements regarding
a "Subject Family," hereafter referred to as S.F.
The requirements of this project regarding the
s.F.
were:
1)
natural parent(s};
2)
multiple siblings, preferred ages
between six and sixteen years, with
the Subject Child, hereafter
~~f~rred
to as S.C., diagnosed as multiple,
developmentally disabled; and,
3)
all members living in a family unit.
The Regional Center counselor selected five cases
34
based upon the above criteria ahd submitted blind copies
of the case files to this investigator for further
screening.
Two families were selected from the five
submitted and face to face interviews were arranged.
Either family could have served as the S.F., however the
family selected has siblings of older ages.
It was
believed that this would better serve the purpose of this
investigation.
Subject Family
The Subject Family (S.F.) selected for this study
was comprised of four members.
The parents were separated
and divorced in 1973, and although the family members
have maintained regular and on-going contact with the
father, he was not involved in this project.
The mother,
hereafter referred to as M., is a 36-year-old single
parent.
The oldest daugther; hereafter referred to as
O.D., is 17 years-old, attends the local high school and
works at a food chain store as a box girl.
hereafter referred to as
high school and enjoys
o.s.,
The son,
is 14 years old, entering
motocross bike racing.
The
youngest daughter, hereafter referred to as Subject Child
(S.C.) is 10 years old and is multiple, developmentally
disabled.
As a result of an apparently mild virus-type
infection at about 18 months of age, S.C. developed major
motor seizures and was hospitalized.
After extensive
35
evaluations~
diaghostio
it was determined that Subject
Child was suffering from Reye Syndrome, with hemiparesis
of her left
Bid~,
and left homynous hemianopsia.
S.C.
suffers from an uncontrolled severe seizure problem for
which she receives:
1)
Sodium Valporic Acid, three times a
day;
2)
Tegritol, 100 milligrams in the
morning and 200 milligrams at night;
3)
Mysoline, 75 milligrams three times
a day; and,
4)
Dilantin, 75 milligrams in the morning
and 100 milligrams at night.
The S.C. has noticable limited function of her left
arm, moderate retardation, severe perceptual/motor
deficits, social and emotional immaturity, speech/
communication difficulties and possible disordered thought
process.
S.C. demonstrates deficits in visual discri-
mination, visual memory, sequencing and spatial relationships.
In addition, there is a strong indication that
her audity memory is deficient.
S.C. is an outgoing, attractive, active young
lady who wears a protective helmet while at school
and playing outdoors.
S.c. is described as social,
dominant, self-willed, determined and likes to be
~boss".
s.c.
does not interact well with other
36
ten years olds, and her two best friends are five
years old.
Through her relationship with her friends, She
is beginning to learn about sharing and taking turns.
Subject Child (S.C.) currently attends an Other Multiple
Handicap$ (O.M.H.) class at the local public school,
riding the school bus to and from school.
S.C. is
reeeiving some behavioral intervention at the school
program for inappropriate behavior with follow-through
at home.
The current public school special education
program goals are:
1)
remedial education with behavior
shaping;
2)
on-golhg medical management of her
seizure disorder;
3)
continued development of Subject
Child's self-help skills; and
4)
development of a sense of responsibility by proper table manners and care
of her bedroom.
The Subject Family (S.F.) lives in a pleasant,
tree-lined neighborhood, in a four-bedroom house, in
a middle-class, rural/urban community.
The S.F. has a
close relationship with each other and the family members
gain strength from one another.
The mother (M) provides
in-home child care for one other child and attends the
local college two evenings a week in the ntirs.ing program.
37
Older son (O.S.) and older daughter (0.0.) take some of
the responsibility for Subject Child (S.C.), however,
thtj t.arnily does use a
re~pite
care worker to allow a
measure of independence foreach of the family members.
While thi£i family ot=?©:ra.tes as a nuclear unit with
occasional family outings with S.C., more often they do
so without the handicapped sibling.
Mother (M.) is
faithful to regularly idantify some time for herself with
each of her children, alone.
Proces~
of Data Collection
The Subject Family (S.F.) was contacted and a second
face to face interview was arranged (see Appendix A) .
Prior to the second meeting, a Statement of Informed
Consent (see Appendix B) was developed by the investigator and approved by the Client's Rights Advocate of
the North Los Angeles County Regional Center for
Developmentally Disabled Persons.
The secorid meeting was
held with all the family members to acquain·t them with
the project.
The Statement of Informed Consent (four
copies) was reviewed, discussed and signed by the
mother (M.).
After the informed consent was obtained,
the project goals and data collection procedures were
discussed in depth and negotiated with all family members.
Questions were answered and prior to the data collection
a series of four "get-acquaintedh meetings were arranged
38
of about two hours in length.
The purpose of these
"get-iloquainted" meetings was to become familiar with the
family interaction style and to allow the family to become
comfortable with the presence of the investigator.
"get~acquainted"
meetings helped to minimize the
These
"outside~
effect of the investigator's presence within the intimate
family unit.
The context of these meetings consisted
of general discussion of the project; trial runs of
the checklist; diaglogue about feelings, ideas and
suggestions of family members, as well as question and
answer sessions.
The tape recorder was used during
these "getwacquainted" sessions to increase its acceptance
within the intimate family unit.
lt was during these
"get-acquainted" sessions, by mutual consent, that the
fonnat of the data gathering was developed.
The
investigator placed the tape recorder in a central area
and would then sit quietly on the outside of the group.
The activities and interactions would be observed and
recorded on the checklist.
If, during the course of the
visits, there were areas of study that did not occur
spontaneously the investigator would pre-arrange with
the mother (M.) games to be played to elicit the data
in the least structured way possible.
As M. frequently
spent time with the Subject Child (S.C.) in play-type
activities, it was felt that this was the least structured
way to gather the information r~quired.
The M./S.C.
39
activities were directly related to naming objects,
colors and following simple directions.
If, during the
course of the observations, the S.C. attempted to engage
the investigator in dialogue or involve her in the
activities, it was mutually decided that the investigator
would ignore the S.C.
If she persisted, M. would make
a statement to S.C. regarding the investigator's need
to do her work and not to bother her.
If S.C. persisted
in involving the investigator in the activities, we
would discontinue the observations for that period.
It
was during the ''get-acquainted" sessions that contact
was made with the
S.c.••
public school, special education
teacher and a subsequent interview was arranged.
A
copy of the signed Statement of Informed Consent was
presented to the teacher.
During the teacher interview,
data was gathered regarding S.C.'s socio-educational
skills, and the checklist developed by the investigator
was completed (see Appendix C).
It was felt that
another meeting with S.C.'s teacher was needed to
validate that the material on the checklist was sufficient
to record the skill areas learned in the public school,
special education program.
A copy of the Statement of Informed Consent was
submitted to Subject Child's (S.C.) Regional Center
counselor and the S.C.'s Regional Center files were
reviewed for background information.
40
A copy of the Statement of Informed Consent was
left with the Subject Family (S.F.) and the investigator
retained a copy.
During this interval of "get-acquainted"
meetings, it was determined that the program-learned
skills to be evaluated in this project would fall into
the following four ca·tegories:
1)
General Knowledge - this category would
include such areas as basic household
items, time concepts, colors, people
in the community and general living
si·tuations;
2)
Social Interactions - observations on
independent, leadership,
responsibilit~
sharing, mood and play habits with
peers;
3)
Communications - spontaneous knowledge
regarding personal data, parts of the
body, body functions, appropriate use
of questions, use of verbs, naming
objects, understanding the use of
prepositions, following instructions,
directional concepts, social speech
and syntax;
4)
Self-Help Skills - observation of
spontaneous performance of dressing,
body hygiene, care of bedroom,
41
toileting, oral hygiene, nasal hygiene,
food preparation, eating, kitchen
clean-up, table preparation and folding
clothes.
The
~kills
seleatad were based upon the input of
the public school, special education teacher and mother
(M.) and were limited by the scope of this project.
The
author elected to do five observations on each of the
four areas listed above, with an, average being calculated
for comparison with the skills learned in the public
school, special education program of this child with
special needs.
42
Chapter 6
RESULTS AND DISCUSSION
Validity of
In~estigation
The observation checklist results were compared to
the taped sessions and the results were then totaled.
An
av@raq~
each skill.
was calculated for the five observations of
The observation checklist averages were
compared with the skills learned in the public school,
special education program.
This comparison of the two
results showed that, in every instance the Subject Child
(S.C.) spontaneously performed within the family unit the
program-learned skills.
The comparisons showed that of
the 54 separate learned skills observed, 40 were spontaneously performed four to five times out of five times
observed; 13 learned skills were spontaneously performed
three times out of five times observed and one skill
was spontaneously performed one to two times out of
five times observed.
This information gives an analysis
of the validity of the observation tool.
The results
of this study show that the validity of the study was
high since the program learned skills were all performed
spontaneously within the intimate family unit.
factors that predispose to this conclusion
were~
Some
43
1)
the observation checklist instrument
was developed, in part, from the
teaching instrument in use, at that
time, in the Subject Child's (S.C.)
public school, special education
program;
2)
the checklist items and their operations under observation were confirmed
as learned by the S.C.'s public
school teacher and by her mother (M.);
3)
S.C. spontaneously performed four to
five times out of five time, 74% of
the 54 separate skills under observation; three out of five times, 24% of
the skills under observation and one to
two times out of five times, 2% of
the skills under observation within
the intimate family unit.
Results and Discussion
This investigation has shown that it is possible
to gather valid data in an intimate family setting, on
a multiple, developmentally disabled child.
The skills were selected from the skills learned
in the public school, special education program of the
Subject Child (S.C.), and were assessed for this project
44
by means of an observation checklist with cassette tape
recordings during each session.
These techniques and
the "get-acquainted" sessions did limit the "outsider"
influence on the intimate spontaneous family interactions.
However, the "outsider" influence is and will continue
to be a factor and an important consideration for future
studies.
The length of time needed to accomplish this
project, eight months, is not realistic for practical
application in the context of Regional Center annual
review, program management.
The investigation did reveal
that there is valid data for viable feedback to a
family, at least in this one case.
The investigation
demonstrates in a practical way, the logic of including
the family as part of the team in the planning and
remediation for a minor child with special needs.
It
is here, within the intimate family unit, that we can
identify if the child has in fact assimilated and
applied the knowledge and skills that hava
bean taught
in the specific individual program.
Recommendations
The scope of this project was limited by the
investigation of a single subject family.
Further study
of this process snould broaden the scope of the project
and should include a much larger base for data gathering.
The factor of an "outsider'' wilJ always be a consideration
45
in ~ny study undertaken within the intimate family unit.
Some means must be sought to reduce this aspect as much
as possible.
The time element of data gathering must
be reduced to make this project feasible for practical
application in the routine of program management.
The
aspect of using the data gathered to give the family
feedback in regard to specific areas of skills learned
within the remedial program and their assimilation into
daily life within the family, should also be considered
in future studies.
APPENDICES
46
APPENDIX A
47
48
1150 W. Ave. J-11
Lancaster, California 93534
February 27, 1979
Mrs.
Drive
California
Dear
I am working on my Masters Degree Thesis in Educational Psychology, at California State University,
Northridge. I would like very much to observe
as the subject for my Masters Thesis Project. I hasten
to assure that your anonymity, as well as that of your
family, will be protected at all times.
The purpose of this project is to appropriately
describe how and \o/hat
does at home and with whom.
This will not be a critical survey, but a descriptive
one, to hopefully learn some important details regarding
the dynamics of
ongoing growth and development.
The focus of the project would be to develop some insights
into the nature and type of interactions and activities
in a family with a ~andicapped child.
This project will extend over a period of not more
than five to six months from its beginning. It would
involve you and all your children. I will be gathering
data on the life condition of
, by means of
observations and checklist
at
prearranged, mutually-agreeable assigned times. I would
estimate not more than 50 to 80 hours total, of your
family's time would be involved. This would allow for
some time for me to become acquainted with your family
and for you and your family to become acquainted with me.
This is not a Regional Center service, but would be
conducted with their approval. Ronald R. Fairbanks, Ph.D.,
Chief of Psychological Services, North Los Angeles County
Regional Center for Developmentally Disabled Persons, is
a member of my Thesis committee.
I would like to meet with you and further discuss
this matter. I am a counselor-in-training at Regional
Center, and was present when
visited with
you for
annual review interview on
49
I will contact you by phone on Monday morning, March
5, 1979, to set up a meeting with you to answer your
questions and explore this project further.
Thank you for your consideration.
Sincerely 1
(Mrs.) Judith A. Roe, R.N.
JAR/jar
Copies to:
Regional Center file
Researcher
Teacher
Subject Family
9 '
APPENDIX B
STATEMEN'l' OF lNFOAAED CONSENT
50
51
S'I'ATEMENT OP INFORMED CONSENT
Date
I,
~ive
-------------------------- ,
my permission for
(l)
------------------~--
to:
review and copy, information from
1
---~--=·----------~-
mother of
S Regional Center file,
( 2)
interview
.Regional Center counselor for
(3)
------~----------------
visit
classroom and interview
--------------------- 's
, and
-------·~'
teacher,
for the purposes of gathering material for her Master•s
Thesis.
I
agree that I and my children,
and
will cooperate in
this project, to the best of our abilities.
This project will include questionnaires, surveys,
interviews and/or direct observations by
, at
prearranged, mutually-agreeable meeting times.
I agree to
allcw the use of a tape recorder during such informationgathering times, with the understanding that the tape will
be destroyed when the relevant material has been retrieved.
I understand that this is not a negional Center services.
r understand that the privacy and anonymity of
myself and my children will be protected during all aspects
of
Thesis Project.
(mother's signature)
(date)
52
(relationship to sub.)
As a condition of doing research concerning persons
described above, I,
, agree not to divulge
any information obtained in the course of such research
to ummthorized persons, and not ·to publish or otherwise
make publi6 any information regarding this/these
person/persons, such as that person/persons is/are
identifiable.
(s~gnature
of researcher)
(date)
APPENDIX C
OBSERVATION CHECKLIST
General KnoWledge
Social Interactiohs
Communication
Self-Help Skills
53
...
APPENDIX 0
54
GENERAL
~~OWLEDGE
GK
Date:
Tape LD.
l.
lf:
Ti..~e
In:
·r~
Out.:
Tine Lapse:
CIRCLE THOSE USE.D COR.l<ECTLY:
Knows Use. of Object!:i:
-;n
"Why do we h.,...l.ve_::--:--.,----:
1. beds
3. houses
2... stoves 4 .. coats
Cow.ments:
Design Concepts:
l~ Mcitches:
2. Poi.nts to:
3. Names:
Comments:
5. d1.shes
6. pans
circle
sq:..;.a.re
rectangle
circlt:
sq~are
circle
square
rectangle
rectangle
Time Concepts: Use appropriately in
1. today
4. yesterday
2. last night 5. tomorrow
3. tonight
6. tOITUl\OZ:Oo( night
Comments:
Colors:
l. Matches:
2. Points to:
3. Names:
Comments:
rt:.:(i
t:ed
red.
bl:..re
blue
blue
conversation, social:
7. day before yesterday
8. day after tomorrow
9. morning
yell.ow
yellow
yellow
green
green
green
Knows Function of Conmmr:it:; Helpers:
1. doc tor·s
2:. polL::e
9. chairs
10. t.e1eph.ones
7. OOOKS
8. Ligh.ts.
3. :1urses
4. ma~l ca-!:"riers
"~'/hy
5.
do
-~e
have
fi~efigh~ers
6. d.;:ncists
13 . .scissors
14. ;0\lXplanes
triangle
t:riangle
tr·iangle
10. aft:~rnoon
ll. L.>st week
12. "ext. week
purple
purple
purple
orange
orange
orange
ll. cars
12.• pencils
brow.n
brown
brown
15. keys
16. cl(lfds
17. n:fr igerator
18. l=il:.s
diamond
diamond
diamond
13. last year
14. next year
black
black
black
pink
pink
pink
grey
grey
grey
'-'<hite
white
white
?"
7.
t8achers
8 .. carpenters
9. farmers
10. painte-rs
11. mechanics
12. grocers
Comments,
(J1
(J1
GENERAL KNOWLEDGE
GK 2.
Date:
Tape I . D. II:
Time In:
Time Out,
Time Lapse:
CIRCLE THOSE USED CORRECTLY:
?n
Knows What To Do In Different Situations: "What do you do when you
5. are sick
11. break somethinq that belong.s
l. are hungry
8. see your shoe is untied
2.• a1:e s~eepy
6. see your hands are dirty 9. want to go outside and
to someone else
7. want to go into a room
3. are cold
it is raining
12. are offered candy by a stranger
4. cut your finger
t:hat is dark
10. see a fire
Comments:
Knows
1.
2.
3.
?''
Where To Go For Services:. "Where do we go when ·..re_-::-are very sick
4. want to see animals like
!. want to borrow a book
want to buy cdndy
tigers and bears
e. want to buy stallli:6 for
want to buy milk
5. want to buy clothes
a letter
6. want to buy medicine
9. need a hai :::cut
Comments:
10. need to wash clothes
ll. want Ollr car repaired
12. need some clothes rlry cleaned
ll1
0'1
SOCIAL
scI.
INTERA~~!ONS
Date:
Tape . .I.D. l:
CIRCLE MOST
APPROPRI~TE
Ti=le I·~::
Tine cwt:
Time ~e:
RESPONSE:
Self-Direction·:
Independence
0-cannot find his way around-to bed, ba.t..hTOOm:,. etc.•
1-knows w-a.y arc-u.nd-b.u.t. Jtl.d:ny t.1..mes g:e~s confused·
2-knows w-ay around-bed, ha.throom._. dir...ing roam,_ etc.
3.-can get to: school and back: by self
4-goes about t:he hou.se alone
Comments:
CIRCLE ITEMS THAT APPLY:
Leader snip
0-is essentially a follower
l-occasionally makes suggestions for group
2-directs activity of one other
3-directs activity of a group
Comments:
Assisting Others
0-does. not assist others ~itn chores
1-assists when directed
2-sometim.es ass-ists on his/her own
3-usually offers to dssist
Comments:
CIRCLE MOST APPROPRIATE: RESPONSE::
Shd.ring. Respor.sibi.lity
0-is a lcn~~--preters to work and be alone
l-works S.it:isfa.:corily Wlt.h one ot~er
2-somer:.irnes ...•orks .::ooperatively N"ith ..;roup
3-works cooper.ati vely w'i th d.C't i ve group
Comments:
U1
-...]
SOCIAL INTERACTIONS
sc
2 •.
Date:
Tape I. D. :#:
Time· In:
Time Out:
Time i.apse :
CIRCLE; MOST APPROPRIATE RESPONSE;
Sharing Belongings
0-does not share toys, food, or belongings :,;i:r.:h others
1-sometirnes shares with .one other
2-sometirnes shares with group
3-usually shares and is frien<:ily
Corrunents:
MOod
0-usual.ly sulky
!-cooperates but reluctantly
2-responses usually bland--neither sulky nor enthusiastic
3-responds to requests chee.rfully
4-characteristically good-humored and enthusiastic
Comments:
Spontaneity
0-mt:st be led
1-rneets new situations hesitantly
2-meet:s new sitt:ation as a challenge
3-welcornes new experiences
Comments:
U1
00
SOCIAL INTERACTIONS
sc
3.
Date:
Tape I.D. If:
Time In:
Time Out.:
Time Lapse:
SCORE ONE (ll POINT !'OR EACH ACTIVITY SUCCESSFULLY PERFORMED:
Iniciaces ball play or social games:
Score 1f t.""te child is observed t.ry1ng t.o draw a.n ad.ul..t into an actl..vity by throwing a toy to him or by
initiating a social game such as ~ek-a-~>e or pde~a-cake~
Commen'ts·;
Beqins· to. •...ut.de.rstand taking. turns:
Enqage in a game with the. child in which· sharing is required_ Examples are bean bag toss, sharing a
manipuLotive toy,. crayons,. and/or clay. Let the child begin. ::eUir,g him/her the two of ye>~ "'ill share
this toy. After he/she has played a brief whil.:, tell him/her it's your turn and gently ta.'<e the toy
from hlm/her~ take a short: turn~ then give it. back. cue ~"'1-e: child in this way two or three times~
Score if the child willinqly gives up the toy ait.er ·the ·rout.t.ne has been established, hands it over
wb~n requested and wa.i.ts tor you to fir:1sh befo:.-e he: takes it back~
Comments:
Uses mother as secure
b~se,
checking back
wi~~
her frequently:
Observ.: the child as he/she initially explores the new· sett:inq. score if, during his explorations
in the· new setring, he is seen ~o physi~ally separate from her/his. mother and, during these selfinitiated separations, is se~n to either visually glance· at h.er face fairly often or physically
return. to her for brie-~. periods of- contact..
Comments:
Ocasiona.lly plays near· other children:
Observe the child for 30 minutes in .i s·etting ,.;here other children are playing. Score if the child
t.:nds to phys.tcally posi.tion himsel£/herself near the children for periods,. rather than staying near
his/her mo~~er or other adults.
Comments:
Pre.fers to pl~y· near. but: not with, other children:
This activity is an extt:nsion ::lf t.he previou.:a act.ivit.y. Score. if the child shows a marked preference
for and a:ctrat.:t.ion to other childr:ent t."l).ough h..:/ she -does noc ye:~ play wit..~ them..
Comments:
U1
\.0
sc
SCCIAL INTERACTIONS
4.
Da.te:
Time ln:
Tape l.D. 1!:
Time Out:
Time Lapse:
SCORE ONE (1}
PO!.NT E"OR EA>..:H AcriVlTY SUCCESSFULLY
fu.m.l.cs dome!:i t. i.:.:
PE~.f'CRMED:
.21c~:. '.l ~ t:.l.es
Observe. the ch.:.:..ld's play with. toys. that:. :-ep~.es.ent ho.usehol.d it,ems.• such as: tat'. kttchens, brooms,
or tool's- S.:-.:-r=e if t...~e c..'l:i ld· enactsr t..h...touqh his t::lay, adult ho~.sehol.:i chores ..,. such as- sweeping;.
cooking, c'le.a:;i:-•.g.,._ and carpentr:.y ..
Comments:
0ft.e-n cliugs to or p~shes away adult
Try to determine. eithe.r by interviewing
t.....,~ mother or observing the moth~r-ch.ild interactions,
wh.echer the ...::~tLi fn!qu.ent.ly exhibt.s short Ferlod.::;. o£ diffi..:ult br.;havior in which he is either
extreme.ly dema.nd:ing: of mot.her .. s time a..."1:d. ~t:tent:l.on in a wh.1.ning, cl1.nging .. infantile. fasll.ian,.
or i$ extremel~l inslstent around issues of. indef-endence. or autonomy,. demanding that he do things
hlm.:5e-.l£, refusing to be even sliqb.tly cooperative.. Beth types- of behavior can . .be seen in the
same child. demonstrating his ambivalence aro~~d his grow1nq autonomy. Score i t these behaviocal
patterns are occurring.
Comments:.
Crie-s when pre·fe.rred: activity i's: blocked
This item.- .:tlso. ·:.oo...:e.t::l.S the childts g:rowi:-:.·:; .:.r:d.:!:t--~ndence.. Whe::-e at. a.n earlier age t.h.e child could
be t.ail..-lj· eas1ly redirected in his activ~tl..es, at:: t:his· polnt the ch..lld: s.tror..g;ly resists any adult
intE:i:cference in his act:ivi.t..l.es, and rather t:h3n be distract.ed by other preferred activities, he
d.i$pla.y·s his anger when his activities a.re interfered with by cry_ing, temper tantrums,.. etc... To
test this item, observe the child•s reactions when the mot.her refuses t.o cooperate ....,ith him, as
in re.fusing to pick him up or giving him another cookie. Or~ if the mother is willing, ask her to
int.~rrupt his play by rerno.ving hrs toy..
Score i.f t...~e. described behavior is observed, or if t:he
mother reports that. i.t. occurs rac..her commonly under the· above cor.ditions.
Co:rnmen ts :
0"\
0
COY~uNICATIONS
csl.
SKILLS
Date:
Tape I.D. t:
Tl:nle t:r.t:
Time O:>t;
Time t.aps.e :
CIRCLE THOSE KNOWN.:
Pet·sonal Data Re,sponse:
7.
l. First n..imt:
~-
2. t'ull
J_ Age
S. Siblings (Fri.ends)
6 .. '!'own/city
ihlme
.5ex
St~e~t
~ddress
8. Birt.hday
9. !'hone nUI%lober
10. P'ar-e:;t name
11.
Complet~ add~ess
Comtr.en ts:
Body
Parts~
l. mouth
.2. ty~s
3. nose
.Jc. feet.
A. Receptl.vely :-
5. hair
''·
..
t.o:.que
t(::eth
8 .. hdnd
9. ears
Hl. h.:o<.~d
ll. legs
12.
drms
lJ. fingers
14 • thumb
15. toes
16. neck
17. st.omach
15. chest
19. back
21. chin
20. knee
2-+. t:lbow
13.
14.
15.
16.
17. back
19. knee
21. f~r..gerng,ils
22. dbC·Ioi
22.
fir~g~rnails
23. heel
25. ankle
26. shoulder
27. jaw
28. hips
29. wrist
30. waist
Comrr,e.n ts :
Body Parts: b. E:,pr~ssi'l.~ely:
5. !1~rr
l. mouth
9.
2 .. eyes
6. h.:1.nd
10.
3. nose
7. ears
11.
4. feet
8. head
12.
legs
arms
fingers
thumb
toes
neck
stomach
chest
1~.
chin
20 ..
n~~l
23 .. aa.~le
24. ;aw
25. shoulder
26. hips
27. wrist
28 .. w.iist
Comrnent:s:
Underst~~ds
body
part·f~ct~ons
Ask the child, Whd.t do you hear with?
comments:
~'hat:
do you. see w1th?
Score if he can answer one or more correctly ..
uses negation, no
lf. c.he child is not. ht:l':arJ to US.t! "n.o" "::S.pont:aJ".;cously, t.r:y to elicit- t..l:"..t: respons.a by asking him a
question s·uch a.s {S~owlng hi..m .3. doll} "Is thl::i a book?"; (showing t;.1..:n ar: empty cup} '"Is t..~ere· any
:ailk it'l the· c~p?.. Score if -:he child '..lSes .. j;,..;:" respc:-...se ..
comments:
0'1
,_.
cs
CJ!>IMu"lil<::ATlO!-; SKILLS
Date;
2.
Tape 1. D. 41:
T.lme In:
T1me Out:
Time Lapse:
:o.nns questio:is sporn:aneously us...>...ng a verb
score if t..he child is heard 1:0 forr.. .a quest.iO!':. of at least.. 't~to'O words, or:.c of which is a verb.
Exampl-es cf .c.i:n.iw.al .responses aze: Whe:re go? or Go home? or See baby?
COUiro:en"'t.s:
Demonst.rat.es .ar.
unders~an'd.ing
of 't-hree prepo:>it..lons
.S·core if th.e ch.l.ld follows at. least.
t.h!:~e
ciirect.ions cor:::ec't.ly.
Comments:
Labels at least three cOmmon objects or pictu.re.s
Score if t.he child names con·ectly three or :more objects or pictures.
Comments:
C!BCLE !TEMS CORRECT'LY USED:
Picture Vocabulary: Poin.ts to -when examiner names:
L dog
4. girl
7. apple
10. i:Joy
2. cat
5. man
a. leaf
11- car
3. key
Comments:
o.
airplane
9. cup
12 .. nail
13. pencil
14. wagon
15- sock
16. hammer
17. fish
lB. duck
CIRCLE THOSE DEMONSTAATED hS KNOWN:
Classifying:
1. t.oys
2. ·Writing instruments
3. numbers
COl:llllents:
4. people
5~ things to read
6 .. animals
7. clothes
8. colors
9~ things to ride or travel in
10. tools
11. foods
12. dishes
l3.furniture
H. de;ngns
15 • .fruit
16. musical
instr'.l.ment.s
17. vegetables
0'\
N
CO~lMl.iN!CATION
Date:
C5 .3.
SKILLS
Tape I. D.
Us~s
.Time In:
Time 'Out:
Time Lapse:
~:
three-word sentences
Score if tl.1-e child is he.az:d -t.o produce three-Ymrk car-..b::.::at.ions jc.:ined in a sentence ~ha~
demonstrates use of subj-ect." v-e_:-bl and object s.uch as, Me wa.:;.t. cookie or Baby hurt hand.
Comments:
De.monst.r.ates .an underst:andir.:g o£ two .P.Z:·epositions
Place two cups in ironL uf the child
·CUPt .under the cup, etc.
Comments:
cup, on the
~~th
one inverted.
Ask
L~e
child to place an object in the
Score i£ the child follows at least two of the directions correctly.
Follows t.wo-step commands
P·resent the child with an ins~uctio·n con~ining two ur..re.lated directions, such as Go open the
door and then .bring .me a block.. l-1ake sure the child l ist.en.s and t.he i-tem.s mentioned are .readily
ava.ilab.le~
You may .r-epeat tile instruct:ion once befor-e he be9l.ns to move, but no more cues can ·be
given after he has started co perform~ Score if the instructions are carried out correctly.
comments;
Fo~
or uses plurals
1.f the child is not heard to use plurals .1:;~. his spontaneous lan9uage,. ·try to elicit responses by
showing him _,pictures of identica.l obje.::-ts ir. a group.
Ask him, "What: is in the picture?., Score
if ..he uses any plural .nou..~s correctly.
{:De--ers ltt""Ould be a correct .response4}
Ccmments:
CIRCLE CONCEPTS CORRECTLY USED:
Quantitative concepts:
1. little/big
Z. short/long
3.
;1.
tall/short
slow/fast
5.
·few/many
7.
<>.
empty /full
a.
les:s/more
thin/fat
9.
10.
thick/thin
narrow/..,ide
11.
light/heavy
12.
shallow/deep
0'1
w
COHl~UNICATlON
SKILLS
cs
~-
Date!
Tape LD.
~:
Time: In:
Time .oux:
Tim,.·i.apse:
CIRCLE CONCEPTS CORRECTLY USED:
Directiona..l/Positi.ona.l. Conc~pts:
l ~ up/down
5 ~ bottom,.: top
2. ov:er;/under
6 ~ go/sto-p
3. out/ln
7. low/high
4. far/near
6. off/on
Comments:
n.
9 . ins ide /4.:tuts ide
10. closed/ofhln
14. stralq.bt/crooked
11. beginn:l.n.g/end
12. above/be1"""'
15. away f!:"'otni row.:=.rd
16. through/around
fon..tal~-d/ba-ckw.ird
l7. c..en.ter; corner
18. going/coming
19. tt<>ntjba.ck.
20. totfrom
21. zi~ht/Left
22. """'"e/the.::e
23. tiq;ht/left of
others
CIRCLE THOSE APPROPRIATE:
S.ocia.l Spet:ch:
1 ~ Exprcl:=.i!)es wants and needs
2~
3.
4.
5.
6 ..
Responds ~ simple ~yes or
no" questions~
Calls at least one person
by name.
Asks for food at table.
Answer$ phone and summons
pec~on requested.
Answers phone, tak.c:s
simple- messaqe* delivers
it ..
7. Vocalizes toilet n<!.;ds.
14. Responds and makes verbal
s-.
Responds appccpriately t.o
greet.ings.
questions in.,olving· choices..
lS.. Acknowledges compliments/
9. Says .. thank you" and ••please""..
service
10. Delivers simp 1e message..
10. Says ~·excuse me'* to interrupt
11. Shows an interest in conversation
politeLy.
of others17 .. Participates in a conversati~G.
12. Oelive.t·s two-part me-ssage
r.,~it.~out rtt:Jnopolizing it.
orally
18 Unde::stands messages and/or dixe:<::tions,
13- Chooses
express
inco~rect
though~s
words to
and/or feelings.
bow many times?
Comments:
CIRC!.E DIRECTIONS CORRECTLY GIVI::N
Verbal Oirec·tion: Follo1ot~:s the Eollowing directions:
l . . . . on the chal.c.
5. Sit here.
9. Orir:g: me t.~t:: .....
2 .. Come to me..
6 ........ in the box..
10 ...... by the chair.
3. Give it to me.
7 . .•. under the...
ll ...... in. front:
4. t~ive m~ the . . .
8. Bring it to me.
12 . . . . besi..:ie·...
l l . . . . :>.bove ••.
14 ...... below ...
15 • . . . . behind ..•
cv~ent:
"'
~
cs
COMMUNICATION SKILLS
Date:
Tape r.D. if:
5.
Time In:
Time Out:
Time Lapse:
CIRCLE DIREC'I'.IONS CORRECTLY GIVEN:
Length of Sentences
Avez:·age nu.'tlber of words used in sentences'
Comments'
2
3
4
4.5
5
6
7
CIRCLE STATEHENTS THAT APPLY
Syntax:
l. One word.
2. Three words other
that "mama" or
"dada"~
3 . .~breviated sentences.
4. Names object shown.
5. Noun phrases with
adjec.tives.
6. Subject-predicate
phrases.
7. Uses plurals.
8. Noun phrases with
article.
9. Refers to self by
name.
10. Three word phrases
11. Possesive noun
12. Three word sentences.
13. Uses pronoun to
refer to others.
14. Asks simple
questions.
15. Refers to self
by pronoun.
16. Adds "ing"
17. uses past tense.
18. uses negative phrases
other than .. no."
19. Uses plurals other
than by adding usn.
(e.g. "foot, feet").
20. Asks questions about
persons and things.
21. Relates experiences with
some understanding of
sequence and closure.
22. Asks definition of words.
Comments:
0"1
U1
Date:
SH l.
SEJ:.F-HELP
Tape I.D. #,
C! RCLE ::!U11!3ER OF EACH tT::M SUCCESSH!LLY CO!o'..!!'!:.ETED:
CO~IENTS
Tim-e r.n ~
TiJM: Out:
Time T.ap-se·.:
- C!TE NUMBER OF ITEM AT BEG:zmi!.NG OF EACH
CO.'!MENT.
Dressi!\.g:.
l ..
2.
To! e::-ates c:lot.hirtq
Perml. ts be i rq jressed
3..
Removes .:;ar."'me:nts (upper}
~1.
PL~ce$
5.
R<2;!'loves sh-:Jt?..::i ,J.r~d. sodc::;.
C~
Remove:.> 9arm-.::nts (lowed
7.
S.
Pl.i--:e::;
1-::~!\H.fve.::;
t.J.
Remov~-s
;,. ~}.
lirt~;::,:tp::i
11.
Un~d.ps
l2.
l3.
·un.ti~s
UPt-'t"!r t::xtr-emi ties into garments
lo1o~o·t:r
extremities into garments
jacket
pull-over items
2ti.
2:9.
IJnbuckles
Unbuttons
Unhooks
?uts on shoes and socks
Hemoves .111 clot.hinq
Dlstinquishe.::; bet.ween back and front
'!'urr1:s. clothing right: s:ide out
Dress~~ self; except fasteners
Hdflgs up cLothing
In~e~ts belt
Zips ~omplet~ly
Closes separdted zipper
Snaps clothinsButtons clothing
Buckles qarm~nts
Hooks garmen:.s
Ties qat"ments
30.
Identifie-s clot.hi:-.g
14.
15.
lC.
17.
18..
1.9.
20.
21~
2Z~
2).
24.
25.:
2627.
•
0'1
0'1
SH
SELF-HELP
2.
CIRCLE: NU!'.BER OF EACH. ITE..'\ SUCCESSFULLY COMPLETED:
Dre;;slng:
31...
3233.
J4..
35.
36.
37~
38.
Body
In:~
Date:
Time
Tape LD. II:
Time Outz
Time Lapse.;
COMMENTS - ClTE Kill!BER OF ITEM AT BEGINNIWG OF EACH
COMME.'IT.
(cont..)
Dresses self completely
Recoqnizes own cl·:tthes.
Distinquishe:s· cled.n from. soiled.
Chuoses clcthing {weather co.ndit:.ions)
Choose~
clothin-J (social conditions}
Identifies. cloches w1tJ1in financi.:ll means
!d~ntifies w1se consumer purchases
Puts. together an asthetically pleasing ensemble
Hygiene:
1.
2w
3.
4.
5.
6.
Tolerates cleansing
Turns on water
Rubs hands ·
Picks up soap
Rubs soap on hands
Returng soap
7...
Rinses. soap off han.ds
8.
12.
lJ.
Turns off water
Obtains tow~l
Dr.ieti hands
Hangs up towel
Washes and dries hands independently
Wets washcloth
14.
Applies soap
15.
Wash~s
~-
10..
11.
16..
17.
18.
19.
:o.
face
Rinses washcloth
Rinses, soq.p off face
Obtains towel
Dries face
Dispose~ of
co~el
0'1
.....X
SH
SI:U.f"-HEU'
Date:
3.
Tape I.D. ii:
CIRCLES NUMBER OF EAC!I
Body Hygiene:
ITE~l
SUCCESSFULLY COMPLETED:
COMMENTS - CITE: NU~ER OF ITEM AT BEGINNING
COMMENT.
or·
EACH
{cont.)
21~
Wash~s.
2:.
G~ts
and dt·leS face
into
ind~pe·ndently
bat~tub
2J.
W.asht:s and rinses neck and ears
24.
Washes and rinses rest of body
2.5.
2b.
Dries body
Puts wa·shc loth away
27.
Bathes
28 •
29.
30.
32.
33·.
34.
Allows hair t:c b·e· washed
Scrubs ha.ir
Pours sh.cunpou
W.:t~•hes hair indet:endentl·;
Dries hair (tow{ll)
Dries. hair (elclctrlc dr·yer/styl:.ingJ
Dries hair ir:dependently
35..
36.
Br-ush~s hair
Cumbs hair
37.
38.
39.
~0.
Brusht-~s and canbs hair independently
Allows cutting at hair
All.ows setting cf ha.ir
sets ow hair
41.
42.
Uses styling brush comb
Clean fingernail$
:n.
Time In-:
Time Out-:.
T ime Lapse:
ir.depend~~tly
43.
Cuts files fingernails
44.
Cuts
45~
Appli~s deodora~t
4:6.
47.
Applit0S shaving .:ream.
Uses safet.y razor
48...
uses electri..: razor
fil~s
tcen~ils
~9.
Uses after shave lotion (boy)
SO.
Uses cosmetics lsirl)
0'\
co
Sl!
SELF-HELP
4.
CIRCLE NUMBER Ot" EACH ITE.."t SUCCESSFULLY COMPLETED,
Date:
Tape I.O·.
Time !n:
t,
'l'ime Out:
Time Lapse:
COH.'!DITS - CITE NUMBER 0F ITE!t AT BEGINNt'NG Oi" EACH
COMMENT.
Straightens Boom:
l.
Straightens a. cluttered room
a.
b.
c.
d~
e.
toy in proper~ place
Puts dirty clothes in hamper
?ut:.s
Put::; tra:ih in proper ....-ontainer
Tidys and du~ts furniture
Puts clean clothes away properly
Toileting:·
l.
2.
3.
4.
5.
6.
1.
8.
9.
10.
H.
12 ...
u.
Tolerat.es sitting
Sits on toilet (unassisted)
Void~
Toilet~ per schedule
Move.:; t.o toilet.
Toilets at regular inrervals
Pushes pants dcwn
Pulls pants up
Stands. (boy)
Uses fly
(boy)
Indic..::ttes need
Uses. toilet tissue as directed
17.,
Closes Ely(boy)
Informs attendant of need.
Asks ~;tra:u;er
Identifies words indi.::ating toile.t
Identi fia-s 'h::ca.ls. i.ndicatir.q t.o1let
lS.
19.
Excu~e::::;
self
LOCdt•.;!,:;
tU.l.l2t
14.
15.•
16.
0\
\.0
SH
SELF-HELP
5.
Date:
Tape r.o.
"'
Time In:
Time OUt:
Time
CIRCLE NUf!BER Ol-' EACH ITEN SUCCESSFULLY COMPLETED:
0:.~}'J1E..."lTS
- CITE
NU~!BER
Lap~e·:
OF ITEM AT BEGINNING Ot EACH
CQMME."''''.
Tol.l.,ting:
:!0....
(cont.)
Rnters :::orrect r(..x;m.
tJses ur in..1l
21.
2.2...
23.
24.
Uses toilet
washes hands
Leaves area cle.m
25 .
Uses hand dryer.
a.
Uses towel
Or;-al Hygiene:
1.
2..
Tolerdtes brushinq
Locate.::> own toot:hbr.J.sh
3.
Remove~
4·.
5.
6.
7.
8.
Put::; t.oothpaste on
Bru~_;ht:!::> tee·t.h
R~n$t!S mouth
Cares f~.:~r toothbrushing
Uses d~ntal-floss
\.:up
mat~ri..lls
Nasal Hygiene:
i.
P~t1n.lts
2.
Wipe::$ own nose
Bl(.)w~ i.nt.o tissue (a.ssist~dl
Blow::; inLo tissue {independently)
BLow.s int:o· tl:a-sue as needed
3.
4.
5..
6..
ncse wiping
rr:..dicat'es
ne.~d
-..J
0
Sll:
SEU'-HELP
6.
Time ~"'
Date:.
To:lpe I.D • • ,
Time
~t::::
Time Lillpse;
CrRCLE NUMBER OF E:AC.r! ITEM SUCCESS<'t:LLY
CO~IPU.'TED:
CO!•mE:!ITS - CITE
~lUMBER
OP ITEM AT BEI>:i!INU.IG OF EACH
COM!!ENT.
Nasal Hygie""':
7.
Disposes o.f tissue
a...
Covers. nose (Wl.th reminder)
co.v~rs nose (...rlthout remLnder}
9..
1.0.
Food
(cont..)
ll.
Clea.m> nose (independtmtlyl
Wa:<h<>s ha.nd:s
12.
Carries cissue
Preparation~
I.
Ur1wraps foods
2..
Opens j·ars
3.
Rewr,d.ps foods
4.
5.
6.
7.
Closes jars
Stirs liquids
8.
9.
Adds liquids
Mixes- with fo:d.;:.
10.
ll.
12.
13..
Mixes dry ingredients
Fills glass (fr~ small container)
Mixes with beat.ar
Follows oral recipe
Fills glass (from large container)
tJs~s
clean
ut~nsil:a
14~
Replaces fallen
15.
l't.ttempt'.S to
16..
·~·e ...l.niiftlr
17.
18.
t)bt.ains r~pla,.:f!=.:::nt
Fills qldS:s i fro~n large container w1.th handle}
U$es kni Ee r:.-,r spreadir:g
I~.
uten~ils
Sf,rt:!ad with knife
\Wl.t:l'. ladle)
-..!
;-a
SELF-HELl!
SH
7.
Date:
'!'ape !.D. <h
C!?.CLE: NUHBER OF EACH
l'!'L~
SUCCESSFULLY COMI?LETED:
Time In:
Time OUt:
Time L.lpse::
COZ.t'IE:.'iTS - CITE NUMBER O!i' ITEM AT BEGINW!:NG OF EACH
COMMENT.
Food Prepa.rat..i.on:
20.
21.
22.
23.
_:.:;.
(..::ont.}
Prepares food ~ith clean hands
Puts: left: ov-ers ~n s't.oraqe containers
Oiscar.ds spoiled feed.
Scx::·apes t:dW' vegetables
Ml.xes
::; .
20.
2':1 ~
TJt!Iitifies measuring utensil
F:o-llo·•s r~cipe
Gcites food
Uses knife for cutting
U::;es s.pa.tuLi
30 •
Uses pee l..:::!r
3.1..
Cuts ::dices with sharp knife.
J2.
33.
Pe~ls
J4.
35.
Refrigerates food/drink
Covers food drink
36.
Uses mediiu.res ~nde~nde.nt,ly
Selects approp.r.iate utensils
Prepares food independently
37 ~
.38.
Read$ follows recipe
with knife
Kitchen Cleanup Skills
l.
Discards food (reminded)
2.
Cie.:trs unbreakables from table
.L
Attem~t.::;:
4.
5.
Sorts and stdcks dishes
.Puts di~hes away
di.sh\\l.:.'lShing
6 ..
Replaces fa.llen'utensils
7.
'rhrows into qarb.a..;eDispose~ of le·ft over food
8~
-...!
t>.J
SF;LF-HEU'
SH
tl.
D~te~
Tape I.D. H;
<.:rRCLE
~UMBER
OF EACH ITEM SUCCESSFULLY COMPLETED;
Ki.t.c:hen ClealilUP Sk.ill::>:
9~
Cl~'ars table
Dispo.;:;es of emp-ty bott1e::;/cans .. ~tc.
St::paratt:s <ll.>.d s ...1ves bcttl.es/car:i:s for recycling
12.
Cleans
13..
l..t.
15.
16.
17.
lB.
19.
20.
Gathers dirty dishes
3cr..lr·es dirty dishes
22.
23.
24.
25.
26..
Rin::,;(~~
Ident.i.f Les dish sodp
Pla...:es st.opper
Puts soap in sink
Fills ,;1nk
Places dishes
Nashes dishes
Places dishes in rinse area
Rins~!:l dishes
Places dishes L~ drying area
Places pots pans in water
Ide:ntifi~d scouring materials.
Wipes table, counter. stove
Dr..1in~ soapy water
2:1'.
ied sink cleanser
s.ink.
Rinses sink
Dries dishes., pots,. utensils
Puts- in design~~ted placB's·
Washes dishes· cle..l.ns up independently
31.
32~
33..
34.
-AT BEGINNING OF EAOi
appli~~c~s
27 ..
28.
30.
ITE.~
tcant: .. l
10.
11.
:1.
CC?t.'tEN'I"$ - CITE' NUMBER OF
CO!'.l1ENT.
Time In:
Yii-te Out:
'1'~~ I..a.pse:
Id~n.tif
Cl~a:n:.i
-..J
w
SELF-HELP
SH
"·
Cl!<CU: NUMBER OF EAC..'H
lTE~I SUCCESSr~J!..LY
COMPLETED'
Date:
Time !no
Tape !.'G ... -lt:
Time Out.:·
Time wp,.,.o
O)M.'!ENTS - CIT!': NllMBEK OF ITEM AT. BEGI!'lll.'IHG. OF EACH
COM!'!ENT.
T<ible Preparatioa,
breakabl~s
1...
Ca.r.r.ies
2..
J.
clean utensils
Carries several items
S~lect:s
4.
Set.S s.im!>le place s-ett::ir.g
S.
6.
Stacks and carries
St~ts mor-e th.d.n one place setting
Sets
~001pl~t.e
table
Household 'l'asks·:
.L.
2..
3.
Performs no household t..J.!il<:::;
Fetches and carrie:s objects on request
Helps a.t little household tasks
4.
Do~s
5.
Perform$ responsible routine chores
routine t.ds.ks on request
l:oldi!lg:
2...
3.
4 ..
S.
o.
Folds towel
'folds faceclath
Matches ~ocks
Folds paired sacl<s
fo~ds p~ll-ov~r shirt
F'olds und.erweat:
7.
8.
Folds open-frvnt· shirt
Folds [>ants
l.
9~
10..
ll.
Folds sheets
Pla.ce.s all cliJ.tf:.inq in d~~iqr:.:.t.ed area
folds cLothes i.ndepend.;ntly
-....!
,::,.
75
CONTINUATION SHEET
FOR F'!LING ADMINISTRATIVE R.EGU!-J\TIONS
WITH THE SECRETARY OF STAT1"1:
R-79-4
(Pursuant to Government Code Section 11380.1)
~t.U.Hill\
ADOPT:fN(j, AMENDING i OR REPEALING
REGULA'riONS OF THE STATE DEPARTMENT
OF DEVELOPMENTAL SERVICES
(J.}
Repeal Section 50205 of Title 17, California
Administrative Code, Part ri, Chapter 2,
Article 2, as it applies to the State Department
of Developmental Services.
(2)
A4opt new •eotions 54000 through 54002 of Title
17, California Administrative Code, Part II,
Chapter 3, Subchapter 1, Article 1; and new
Section 54010 of Title 17; California Administrative Code, Part II, Chapter 3, Subchapter 1,
J\.rt;igle 2 as follows:
Article 1.
54000.
Definitions
Developmental Disability.
(a)
"Developmental Disability" means a disability
that is attributable to mental retardation, cerebral palsy,
epilepsy, autism, other conditions similar to mental
retardation that require treatment similar to that
required by mentally retarded individuals.
(b)
The Developmental Disability shall:
(1)
Originate before age eighteen;
(2)
Be likely to continue indefinitely;
(3)
Constitute a substantial handicap for the
individual as defined in the article.
(c)
Developmental Disability shall not include
handicapping conditions that are:
(1)
Solely psychiatric disorders where there is
impaired intellectual or social functioning which
originated as a result of the psychiatric disorder or
treatrneht given for such a disorder. Such psychiatric
76
disorders
include psycho-social
deprivation and/or
br personality disorders even
wh~re social and intellectual functioning have become
seriously impaired as an integral manifestation of the
disorder.
psyehoe!s,
sev~re neuresi~
(2)
Sotely learning disabilities. A learning
is a condition which manifests as a significant
discrepancy between estimated cognitive potential and
actual level of educational performance and Which is not a
result of generalized mental retardation, educational
or psycho-social deprivation, psychiatric disorder, or
~sens<>:ry ioss.
dis~bility
(3)
Solely physical in nature. These conditions
include congenital anomalies or conditions acquiredthrough
disease, accident, or faulty development which are not
associated with a neurological impairment that results
in a ne•d ror treatment ~imilar to that required formehtal
retardation.
Note:
History: Section 50205, California Administrative
Authority Cited: Section 4512, Welfare and
Institutions Code.
Reference: Sections 4500 et seq.;
Welfare and Institutions Code.
COde.
54001.
Substantial
Handica~:
(a)
"Substantial handicap" means a condition which
results in major impairment of cognitive and/or social
functioning. Moreover, a substantial handicap represents
a condition of sufficient impairment to require interdisciplinary planning and coordination of special or
generic services to assist the individual in achieving
maximum potential.
(b)
Since an individual's cognitive and/or social
furtctioning are many-faceted, the existence of a major
impairment shall be determined through an assessment which
shall address aspects of functioning including, but not
limited tot
( 1)
ConULtunication skills;
( 2)
Learning;
( 3}
Self-care;
( 4)
Mobility;
( 5)
Self-direction;
77
(6}
Capacity for independent living;
(7)
Economic self-sufficiency.
(c) The assessment ghall be made by a group of
l\@g:i..anal Center professionals of differing disciplines and
sh~ll include consideration of similar qualification
appraisals performed by other interdisciplinary bodies
of the Department serving the potential client. The group
shall in~l.iJde as a minimum a program coordinator, a phy5ici~n, and a psychologist.
·
(d) The Regional Center professional group shall
consult the potential client, parents, guardians/conservators, educators, advocates, and other client representativaa to the extent that they are willing and available
to participate in its deliberatiorts and to the extent
that the appropriate consent is obtained.
Note~
History: New
Autll()J:'ity cited: Section 4512, Welfare and Institutions
Code. Reference: Sections 4500 et seq., Welfare and
Institutions Code.
54002.
Cognitive:
"Cognitive" as used in this chapter means the ability
of an individual to solve problems with insight, to
adapt to new situations, to think abstractly and to profit
froin experience.
Note: History: New
Aut'fiority cited: Section 4512, Welfare and Institutions
Code. Reference: Section 4500 et seq., Welfare and
Institutions Code.
Article 2.
54010.
Eligibility
Eligibility for Regional
~enter
Services:
(a) Any resident of the State of California believed
to have a developmental disability, and any resident of
the State of California believed to be at high risk of
parenting an infant with a developmental disability shall
be eligible, upon application to the regional center,
for initial intake, diagnostic and counseling services,
and a determination regarding the need for assessment.
(b) Eligibility for ongoing regional center services
shall be contingent upon the detennination, after intake
and assessment, that the person has a developmental
78
, disability with substantial handicap as defined in this
article.
{c) Any person who, after intake and assessment,
is d9termined to be at high risk of parenting an infant
with a developmental disability may be eligible for ongoing regional center services.
(d} Any individual deemed ineligible may appeal the
·decision in accordance with Welfare and Institutions Code,
Sections 4700-4725. The Director•s decision resulting
from a fair hearing appeals process shall be final and
. binding on all parties.
Note: History: New
Authority cited: Section 4640, Welfare and Institutions
Code. Reference: Sections 4640, 4642, 4643; and 4644
Welfare and Institutions code.
79
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New
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Family systems and the learning
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Working with slow learning blind children.
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1 r 3 3::-t •
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Teach me,
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81
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A..~
outlook
"'""':"'~,~-
UnmGlt needs of deaf/blind children.
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Love is not enough.
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G.
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82
B~ •~
The blind child with multiple handicaps challenge.
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~
M. H.
Emotional aspects of the communication
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16~
l,!HSG,
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How does a
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Exce;etional children in~. the schools.
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New York:
Edminister, P.
Learning more about children and fa.J11ilies.
Childhood education, 1977, 3, 122-127 .
.
- __,___
.,.··~~.,...~
Egg, M.
When a child is different.
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Ehlers, w.
where
New York:
The John
Mothers of retarded children: how they feel,
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Charles C.
Thomas, Publ1sher, 1966.
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Eisenberg, I..
Brain dama9e in children the biological
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Wilkins, 1963.
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Toilet training and the severely defective
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Earlbaum; L.
Child's effects on adults.
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Bell and
Physical management of the multihandicapped
Ethun, C.
The american family physician, 1966, 2,
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38-44.
Falck, H.
Mental retardation:
a family crisis - the
role and function of the social worker. McCormick
quarterl~, 1966, 19, 26~39.
Feldman, M~ A., Byalick, R. and Rosedale, M. P.
Parent
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Exceptional children, 1975, 8, 551-554.
83
Froce, D. G.
Social status of physically handicapped
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J'ournal fqr ~xceptional children, 1956,
2j, 104-107, 132-133~
Fowle, C.
Effects of a severely mentally retarded child
on the family.
American journal of mental deficiency,
1968, 73, 468~473.
Freedman, S.
Psychological implications of the multiply
handicapped person. New outlook for the blind, 1967,
61' 185-189, 204.
Goldstein, H.
~pecial
tte~d.in2~-!P inaipstreaming.
Learn1ng Corp., 1978.
Guilford, Conn.:
Gordon, S.
Living folly:
a guide for yo~hg Eeople with
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