Table Of ContentParental Attitudes toward Involvement in the Lives of Adults with Intellectual and
Developmental Disabilities Following Residential Transition.
A DISSERTATION
SUBMITTED TO THE FACULTY
OF
THE GRADUATE SCHOOL OF APPLIED AND PROFESSIONAL PSYCHOLOGY
OF
RUTGERS,
THE STATE UNIVERSITY OF NEW JERSEY
BY
DAVID TOMAS CERNIKOVSKY
IN PARTIAL FULFILLMENT OF THE
REQUIREMENTS FOR THE DEGREE
OF
DOCTOR OF PSYCHOLOGY
NEW BRUNSWICK, NEW JERSEY OCTOBER, 2014
APPROVED: ___________________________
Michael Petronko, Ph.D.
___________________________
Doreen DiDomenico, Ph.D.
DEAN: ___________________________
Stanley Messer, Ph.D.
ABSTRACT
This study attempted to examine parental experiences leading up to, and following the
transition of their son or daughter with intellectual and developmental disabilities (IDD)
to a community-based residential placement. This is a field of study that has not been
sufficiently researched, despite the increasing number of adults with IDD who have
moved out of their parental home and into community-based residences in recent years.
For the purposes of this study, the researcher performed semi-structured interviews with
six parents of adults who had been diagnosed with IDD and had been subsequently
transitioned into community-based residences. Through the use of an Interpretive
Phenomenological Analysis (IPA) research design, the researcher identified several
phenomena, which arose across the participants that warrant further study and
examination. Specifically, the researcher found that the participants’ descriptions could
be clustered around three main superordinate themes: balancing independence and
protection, the redefinition of the parent’s identity, and the practical and emotional
preparation and response to the transition itself. As these phenomena are further
researched in the transition process from parental home to community-based residence, it
is proposed that better outcomes for all involved will be experienced.
ii
ACKNOWLEDGMENTS
TO BRIELLE WELZER, WHO SUPPORTED ME THROUGH EVERYTHING.
I ADORE YOU.
I WOULD ALSO LIKE TO THANK DR. MICHAEL PETRONKO, DR. DOREEN
DIDOMENICO, DR. ANDREA QUINN, AND DR. RUSSELL KORMANN:
NSTM PUT ME ON THE RIGHT PATH. THANK YOU.
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TABLE OF CONTENTS
PAGE
ABSTRACT ...............................................................................................................ii
ACKNOWLEDGEMENTS .......................................................................................iii
TABLE OF CONTENTS ...........................................................................................iv
LIST OF TABLES .....................................................................................................vii
LIST OF FIGURES ...................................................................................................viii
CHAPTER
I. INTRODUCTION ................................................................................1
Historical Perspectives ..........................................................................1
A Third Option: Community-Based Housing .......................................2
Self-Determination ................................................................................9
The Separation/Launching Stage ..........................................................17
Prior Research on Post-Placement Parental Involvement .....................22
Purpose of the Study .............................................................................25
Statement of Intent ................................................................................28
II. METHODS ...........................................................................................29
Research Perspective ............................................................................29
Researcher bias .............................................................................31
Interpretive Phenomenological Analysis ......................................33
Participants ............................................................................................34
Recruitment procedures ................................................................34
Participant demographics ..............................................................36
iv
Measures ...............................................................................................38
Semi-structured interview .............................................................38
Vineland-II Scale of Adaptive Behavior.......................................38
Parental Attitudes toward involvement Questionnaire .................39
Procedures .............................................................................................39
Data collection ..............................................................................42
Transition-related inquiries ..................................................44
Resources and support .........................................................44
Change in role or level of involvement................................44
Future expectations ..............................................................44
Parental level of involvement in specific life areas .............44
Data analysis .........................................................................................45
Presentation ...........................................................................................50
III. RESULTS .............................................................................................52
Participant Descriptions ........................................................................53
Anna ..............................................................................................53
Bonnie and Brian ..........................................................................56
Clara ..............................................................................................58
Dan and Denise .............................................................................61
Superordinate Themes ..........................................................................62
Balancing independence and protection .......................................62
Decisions regarding placement .............................................64
Establishing the locus of control ...........................................68
v
How and when to step in .......................................................82
Redefinition of the parent’s identity .............................................91
The ongoing parental relationship .........................................91
Life apart from their child ......................................................99
Levels and types of contact ....................................................104
Managing the transition ................................................................108
How parents prepared for the transition .................................109
Hypothetical planning stage ...........................................109
Considerations of mortality as impetus for transition ....115
Realistic planning stage .................................................118
Experiences following the transition .....................................119
Involvement in the “little things” ...................................120
Difficulties with staff .....................................................123
IV. DISCUSSION ........................................................................................129
Limitations of the Study........................................................................129
Conclusions and Potential Implications ................................................130
REFERENCES ..........................................................................................................137
APPENDIX A1: Semi-Structured Interview Schedule..............................................149
APPENDIX A2: Parental Attitudes toward involvement Questionnaire ..................151
APPENDIX B1: Phone Screen ..................................................................................157
APPENDIX B2: Informed Consent, with Appended Assent for Audio-recording ...158
APPENDIX C1 - C6: Transcribed Interviews ...........................................................161
APPENDIX D: Table of Superordinate Themes .......................................................262
vi
LIST OF TABLES
Table 1: Table of Superordinate Themes ...............................................................................262
vii
LIST OF FIGURES
Figure A1: Parental Attitudes toward involvement Questionnaire, page 1 ...........................151
Figure A2: Parental Attitudes toward involvement Questionnaire, page 2 ...........................152
Figure A3: Parental Attitudes toward involvement Questionnaire, page 3 ...........................153
Figure A4: Parental Attitudes toward involvement Questionnaire, page 4 ...........................154
Figure A5: Parental Attitudes toward involvement Questionnaire, page 5 ...........................155
Figure A6: Parental Attitudes toward involvement Questionnaire, page 6 ...........................156
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PARENTAL ATTITUDES FOLLOWING RESIDENTIAL TRANSITION 1
Parental Attitudes toward Involvement in the Lives of Adults with Intellectual and
Developmental Disabilities Following Residential Transition.
Introduction
Historical Perspectives
The research in the field of intellectual disabilities and developmental disabilities
(IDD) is fairly comprehensive across numerous topics. However, the majority of the
work done in the early half of the twentieth century was performed on the diagnosis of
disabilities and special education for children with developmental disabilities
(Scheerenberger, 1983). Even in regard to adults with IDD, a great amount of the
available research has addressed the function and efficient delivery of post-secondary
education. The role that adults with IDD play in the community, outside of the classroom
or workshop, on the other hand, is a much newer and sparser field of study
(Scheerenberger, 1983). Throughout the first half of the twentieth century, the majority of
American parents of individuals with IDD were presented with two disparate options. If a
family could afford to care for the needs of their family members, they had the option to
keep their son or daughter in their home. Meanwhile, until the mid-1950’s, families in
lower socio-economic brackets faced great financial pressure to place their offspring with
disabilities into large residential institutions (Scheerenberger, 1983). In the United States,
the number of these institutions, and the population admitted into these facilities,
skyrocketed until the 1970’s. Often, following admission, these individuals had little to
no contact with their families. (Scheerenberger, 1983). Recently conducted research
continues to suggest that parents of individuals placed in larger institutional residences
PARENTAL ATTITUDES FOLLOWING RESIDENTIAL TRANSITION 2
have lower levels of contact with the individuals than families of individuals who were
placed in community-based settings (Spreat and Conroy, 2002).
Thus, for decades, families were presented with a dilemma of extremes when it
came to the role they took in their sons’ or daughters’ lives. They could assume near-
complete responsibility of their children’s care and life choices by keeping their son or
daughter at home, or they could seek an institutional placement. In these placements, it
was often observed that the professionals in charge of care disregarded or even disdained
parents’ wishes and advice about the care of their sons or daughters (Roos, 1976). Even
recently conducted with parents of individuals placed in larger residential facilities
continues to suggest that parents express experiencing low levels of participation in
decision making or operations of the facilities. These results remain true even for parents
who report a high level of visitation and contact with their son or daughter (Schwartz and
Tsumi, 2003). This suggests that for decades, parents could either opt to maintain all, or
nearly all, of the parenting roles they fulfilled throughout their son’s or daughter’s lives,
or cede the majority of the decision making role to professionals who frequently viewed
parental input as irrelevant to their work in caring for the adults (Roos, 1976).
A Third Option: Community-Based Housing
Starting in the 1950’s, pressure began to build, through legislative and political
means, for a return to a more community-focused approach to housing. This movement
first saw success during a great wave of deinstitutionalization that occurred under the
Richard Nixon administration. One result of the deinstitutionalization movement was a
new residential option for adults with disabilities: community-based housing. Wolf
Wolfensberger described this option and its benefits in 1971: “I can see no reason why
