HEAD TO TOE: ASSESSMENT OF ADULTS WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES- EDUCATING NURSES
A Project
Presented to the faculty of the Department of Nursing
California State University, Sacramento
Submitted in partial satisfaction of
the requirements for the degree of
MASTER OF SCIENCE
in
Nursing
by
Caitlin Elizabeth Baumgardner
FALL
2012
HEAD TO TOE: ASSESSMENT OF ADULTS WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES- EDUCATING NURSES
A Project
by
Caitlin Elizabeth Baumgardner
Approved by:
__________________________________, Committee Chair
Dian Baker PhD, RN
____________________________
Date
ii
Student: Caitlin Elizabeth Baumgardner
I certify that this student has met the requirements for format contained in the University format
manual, and that this project is suitable for shelving in the Library and credit is to be awarded for
the project.
__________________________, Chair ___________________
Carolynn Goetze PhD, RN
Date
School of Nursing
iii
Abstract
of
HEAD TO TOE: ASSESSMENT OF ADULTS WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES- EDUCATING NURSES
by
Caitlin Elizabeth Baumgardner
The purpose of this project is to provide online learning modules to educate advanced practice
nurses how to accurately and effectively perform assessments of adults and older adults with
intellectual and developmental disabilities (I/OD). The goal is to reduce the healthcare inequities
experienced by persons with I/OD and improve quality of life. The online modules are designed
for advanced practice nurses and include education on communication, aging with Down
syndrome, aging with cerebral palsy, and aging with autism spectrum disorder. The modules
were reviewed by a focus group comprised of individuals with I/OD experience, both personal
and professional, for accuracy of I/OD information. An expert nurse evaluated the assessments
for validity and thoroughness. Future implications for the learning modules include expanding
the target population to pre-licensure nurses, and addressing assessments for persons with other
I/OD.
_______________________, Committee Chair
Dian Baker PhD, RN
_______________________
Date
iv
ACKNOWLEDGEMENTS
I have to start by remembering Chris Linn RN, who was my preceptor during my
community health internship, just one semester away from receiving my bachelors of science in
nursing. She has had such a large impact on me as a person and as a nurse. She introduced me to
the wonderful world of home care, in which now I work, but more importantly showed me
through her actions what it meant to be a caring, compassionate human being, the importance of
treating every patient with respect and kindness, and how the smallest gesture can mean the
world. She also encouraged me to get my masters degree sooner in my life rather than later.
Well Chris, I did it!
To my parents John and Nancy Buechsenstein who have raised me to be an honest, hardworking, productive member of society, by showering me with love and support every second of
my life. I consider myself a bit of both parents, a nurse like my Mom, and an educator like my
Dad, and I strive to be like them and am proud to follow in their footsteps. Well folks, I finished!
To my professor, mentor, and advisor Dr. Dian Baker, who inspired me by just being
herself- a hardworking, kind, and goliath-like advocate for her patients and students. I am
finishing my masters degree because of her guidance and I am forever grateful for being a part of
this project as it opened up a whole new world of nursing for me as well as ignited a new passion
in my professional career. Well Dian, where should we go from here?
Lastly, I may have never come to Sacramento if I hadn’t followed the love of my life, my
husband Ben Baumgardner. He has been my champion- supporting me through my highs and
lows, allaying my anxieties, and loving me no matter what. Ben, thank you.
v
TABLE OF CONTENTS
Page
Acknowledgements .................................................................................................................... v
Chapter
1. PURPOSE AND RATIONALE ...……………………………………………………….. 1
Description of Content ............................................................................................... 5
Significance and Benefit ……………………………………………………………..6
Limitations …………………………………………………………………………...8
Definition of Terms …………………………………………………………………..9
Organization of Remaining Chapters ……….………………………………………11
2. REVIEW OF THE LITERATURE ............................................................................. .....12
Major Themes ........................................................................................................... 13
Gaps in the Research ……………………………………………………………….18
3. INTENT OF PROJECT ..................................................................................................... 20
Development of the Modules ……………………………………………………….21
Project Overview …………………………………………………………………...23
4. PROJECT EVALUATION .............................................................................................. 27
Focus Group Themes Related to Literature ………………………………………...28
Conclusions and Recommendations ………………………………………………..33
Appendix A. Sample Screen Shots ....................................................................................... 35
Appendix B. Section 508 Standard Results .......................................................................... 40
Appendix C. Demographic Questionnaire …………………………………………………46
Appendix D. Focus Group Agenda ………………………………………………………...47
References ............................................................................................................................... 48
vi
1
Chapter One
Purpose and Rationale
Nursing education has been evolving since nursing first became recognized as a
profession under the leadership of Florence Nightingale (Nelson & Rafferty, 2010). In the last
two decades, there has been a call for more changes to the formal education, by leaders of the
profession like Patricia Benner, to better prepare for the complex world of healthcare (Benner,
Sutphen, Leonard & Day, 2010). In 2010, the Institute of Medicine released “The Future of
Nursing” report, recommending that nurses role be expanded to fully recognize the scope and
potential of nurses (Institute of Medicine, 2010). Although much of the focus in the report is on
pre-licensure nursing, the education of advanced practice nurses (APNs) who become educators,
nurse practitioners, clinical nurse specialists, and researchers were also addressed. Advanced
practice nurses are professionals who obtain post-graduate education in the form of a master’s
degree, doctorate, or certification. Their higher levels of learning place them in leadership
positions therefore they have an even greater responsibility to their healthcare community.
Advanced practice nurses can take the lead on initial assessments and create care plans and
recommendations for patients at any age, in many healthcare settings, and should be utilized to do
so (Board of Registered Nursing, 2010; Hahn & Aronow, 2005; Service & Hahn, 2003).
An area that APNs can take the lead in is managing the care for the growing population
of adults 65-years and older (Administration on Aging, 2011; Gilje, Lacy, & Moore, 2007;
Service & Hahn, 2003). The significance of this trend is amplified by the general poor state of
health of these adults; a large majority suffers from one or more chronic illnesses including heart
failure and diabetes mellitus (Centers for Disease Control and Prevention, 2012). Nurses care for
aging individuals on a daily basis and yet many nursing schools around the United States still lack
adequate training in gerontology and geriatrics (Gilje et al., 2007).
2
The main focus of this project are adults and older adults with intellectual and
developmental disabilities (I/OD) such as autism spectrum disorders, cerebral palsy and Down
syndrome. This special needs population is often overlooked in the standard nursing curricula
and therefore additional educational resources are needed. APNs cannot meet the needs of this
population if they are not adequately prepared. The intended audiences for these educational
modules are APNs and other service support specialists such as gerontology case managers and
physical therapy.
These modules meet both the federal and state definition of intellectual and
developmental disabilities. According to the federal Developmental Disabilities Act, section
102(8), the term “developmental disability” means a severe, chronic disability of an individual 5
years of age or older that,
1. Is attributable to a mental or physical impairment or combination of mental and
physical impairments;
2. Is manifested before the individual attains age 22;
3. Is likely to continue indefinitely;
4. Results in substantial functional limitations in three or more of the following areas of
major life activity;
(i) Self-care;
(ii) Receptive and expressive language;
(iii) Learning;
(iv) Mobility;
(v) Self-direction;
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(vi) Capacity for independent living; and
(vii) Economic self-sufficiency.
5. Reflects the individual's need for a combination and sequence of special,
interdisciplinary, or generic services, supports, or other assistance that is of lifelong or
extended duration and is individually planned and coordinated, except that such term,
when applied to infants and young children means individuals from birth to age 5,
inclusive, who have substantial developmental delay or specific congenital or acquired
conditions with a high probability of resulting in developmental disabilities if services are
not provided (Para. 5)” (Maryland Developmental Disabilities Council, n.d).
California has a more narrow definition of developmental disability. The developmental
disability must occur before the age of 18 and may include categories of eligible conditions such
as autism, cerebral palsy, mental retardation, epilepsy, and conditions requiring services similar to
those required for persons with mental retardation (State Council on Developmental Disabilities,
2012). Historically, babies born with an I/OD did not survive to become seniors and aged adults.
For example, babies born with Down syndrome born in 1929 only lived to age 9 (Torr, Strydom,
Patti & Jokinen , 2010). Since then, early recognition of I/OD, early interventions, and advancing
medical care has led to longer life spans (Service & Hahn, 2003; Tommet, York, Tomlinson &
Leonard, 1993; Torr, et al., 2010). In the 21st century persons with I/OD not only live to become
senior citizens but also live independently with jobs and families (Ballin & Balandin, 2007;
O’Brien & Rosenbloom, 2009).
With aging there are inevitable physiological changes in all people, as well as acquired
diseases both chronic and acute (O’Brien & Rosenbloom, 2009; Service & Hahn, 2003). While
aging and chronic diseases are well studied in people without disabilities, there is a research gap
4
on aging with I/OD (Service & Hahn, 2003). Not only is there a research gap but an evident
inequity of universal support and education which has led to health practitioners failing to
recognize the specific problems experienced by aging individuals with I/OD (Hahn, 2003; World
Health Organization, 2000). The World Health Organization (2000) recognized this problem
more than a decade ago, but even more recently, Healthy People 2020 dedicated objectives to
promoting the “health and well-being of people with disabilities”. It is recognized by both these
large organizations and many healthcare researchers that the inequities experienced by the aging
adult with I/OD are in part due to lack of adequate knowledge and preparation among healthcare
providers (Hahn, 2003; Healthy People.gov, 2010; Service & Hahn, 2003; Smeltzer, Avery &
Haynor, 2012; World Health Organization, 2000). Patients with I/OD are at high risk of
diagnostic overshadowing, meaning that their disease symptoms may be attributed to their
disability while the true pathology is ignored (Fahey-McCarthy et al., 2009; Fisher, 2004).
Unfortunately, persons with I/OD were historically discriminated against which continues into the
21st century (Northway, 1997; World Health Organization, 2000). The oppression can be wellintentioned but in the end keeps people with disabilities marginalized, their healthcare needs
unmet (Northway, 1997). Nurses must be educated so they can advocate for patients with I/OD
and improve their healthcare experiences and quality of life.
Nurses’ Role in Care Setting Transitions
Utilizing APNs to transition patients from the hospital to their homes reduces hospital
readmissions and therefore reduces healthcare costs and improves quality of life in the
community for patients across the lifespan (Brooten et al., 2002). The concept of transitional care
involves an APN assisting in managing the care for a patient as an inpatient, to their home setting,
and on to their first follow up visit with the patient’s primary care provider. The management of
care includes medication education, chronic illness management, as well as mediating the
5
patient’s home environment and making referrals to appropriate agencies to improve the patient’s
support in their home (Brooten et al., 2002; Naylor et al., 2007). Although the transitional care
model has been applied for older adults without intellectual and developmental disabilities, the
model may be translated for use in transitioning older adults with I/OD to their homes. The first
step to expanding the model for use in persons with I/OD would be to develop curriculum and
educate nurses (Service & Hahn, 2003). To practice to their broadest scope and address the
disparities in health care, APNs need the education and tools to assess and properly care for
adults and older adults with I/OD. Research has shown, based on the transitional care model, that
utilizing APNs improves health outcomes for patients, reduces the re-hospitalization rate,
decreases healthcare costs, and not least importantly improves quality of life (Brooten et al.,
2002).
Aim of the Project
This project’s aim is to introduce an online module on assessing adults with I/OD, to
decrease knowledge gap and the inequities experienced by persons with I/OD. The module will
be designed to: (a) embed within existing APN curriculum, (b) educate APNs on the assessment
of adults with I/OD, (c) provide APNs with tools of assessment, and (d) provide links to
supplemental resources. The goal of the project is to improve the health and wellbeing of older
adults with I/OD by improving the knowledge and skills of the advanced nurse workforce.
Description of Content
The curriculum is designed to be delivered via online modules. The online module is an
interactive website that can be embedded into preexisting curriculum of nursing graduate school
courses. The module includes one module on communication and three modules on common
I/OD: (a) Down syndrome, (b) cerebral palsy, and (c) autism spectrum disorders. These three
I/OD have their own focus page, each with an overview of the disability, objectives for the
6
module, and a review of the epidemiology of the disability. The curriculum assumes that
registered nurses’ undergraduate nursing curricula included basic assessment. Each focus page
contains information that supplements the general assessment of an older adult with those that are
unique and should be considered when assessing an older adult with I/OD. The assessments are
structured in a “head to toe” organizational style that is typical of most assessment courses for
nurses. Starting with head and neck, each major physiological structure is reviewed and unique
findings for persons with I/OD are covered. For example, adults who have Down syndrome may
show signs of dementia as early as their third decade as compared to a typically aging individual
who may not be assessed for dementia until their sixth decade (Centers for Disease Control and
Prevention, 2010; Coppus et al., 2006).
In addition to the head to toe assessments, general health screening is on each main page
and includes medication management and healthcare maintenance. Patterns of abuse that are
often overlooked are included in the curriculum. Issues of sexuality unique to persons with I/OD
are also included. Referrals and interdisciplinary care are emphasized in the modules. Because
nurses are often the first healthcare professional in contact with a patient, it is important to
advocate for referrals to other members of the interdisciplinary team as needed. For example,
after the nurse completes an assessment a referral for an occupational or physical therapist may
be required to address mobility and safety issues. A reference list and supplemental information
are included on each main page.
Significance and Benefit
The main benefits of this project are to improve the quality of life for adults and older
adults with I/OD who have every right to be treated equally and receive equitable healthcare as
others without I/OD (Department of Developmental Disabilities California, 2012). By training
APNs to correctly assess adults with I/OD, patients are provided with quality and safety in
7
healthcare. A well-educated workforce with APNs prepared to care for adults with I/OD creates
equity and that coincides with patient’s right to be a full partner in their healthcare and improve
their quality of life.
The significance of this project goes beyond the need for geriatric and I/OD assessment
education for APNs. The real significance is the hardships that people with I/OD face daily,
many of which could be prevented. It has already been established that people with I/OD are
living longer and into their “golden years” (Torr et al., 2010; Service & Hahn, 2003; Strax,
Luciano, Dunn, & Quevedo, 2010). Normal changes of aging plus acquired chronic diseases put
older adults at risk of poor quality of life (Service & Hahn, 2003; Strax et al., 2010). In addition,
the disparities of care experienced by adults with I/OD puts them at an even higher risk of poor
health (Healthy People.gov, 2010).
Adults with I/OD are often unable to obtain jobs and are deemed unemployable (Kiernan,
2011). The unemployment is due to many factors including mental and/or physical limitations,
lack of job training and preparation in their young adulthood, and sometimes stigmatism (Glew &
Bennett, 2011; Kiernan, 2011). Inability to obtain a job can hinder independence for people with
I/OD for financial reasons as well as make them feel isolated from the larger community (Glew &
Bennett, 2011; Nota, Ferrari, Soresi, & Wehmeyer, 2007). In addition, many people with I/OD
are not allowed to drive, often having to rely on others for rides or pay for public transportation.
This affects their level of independence as well. Communicating and being understood can be a
challenge for some people with I/OD (Ballin & Balandin, 2007). Difficulty communicating
leaves a person at risk for not having their needs met as well as vulnerable to being taken
advantage of, victims of abuse, and not being able to advocate for themselves (Eastgate,
Scheermeyer, van Driel, & Lennox, 2012; Hughes, Lund, Gabrielli, Powers, & Curry, 2011).
There are many instances of a discontinuity of care in the transitional stages from childhood
8
through adulthood due to the lack of education of the healthcare systems of I/OD (Glew &
Bennett, 2011). Many of the adverse outcomes that impact quality of life across the lifespan for
persons with I/OD could be remedied with earlier intervention and services based on
comprehensive assessment. Before thorough assessment and intervention can occur, a wellprepared, highly qualified workforce is required (Fahey-McCarthy et al., 2009; Iacono &
Sutherland, 2006; Smeltzer et al., 2012).
Common conditions suffered by adults with I/OD who affect their quality of life are
preventable but are often missed on assessment due to lack of education, or missed altogether
because of inadequate follow-up care (Iacono & Sutherland, 2006; Smeltzer et al., 2012). Some
adults avoid seeking healthcare because of their fears related to the quality of care (Smeltzer et
al., 2012). Conditions such as constipation, pain, inactivity leading to obesity or deconditioning,
malnutrition, poor oral care, sense of isolation/loneliness, depression, and comorbidities related to
disability or from medications all affect quality of life and are often not addressed by healthcare
providers (Ballin & Balandin, 2007; Service & Hahn, 2003). Adults with I/OD who are not
already fully independent, face changes in their living situation if they have lived their whole
lives with their parents (O’Brien & Rosenbloom, 2009; Service & Hahn, 2003. They may or may
not have siblings or other family support and must rely on the support of the others. Therefore
APNs should be aware of transition across the life span and how health impacts independent
living opportunities for persons with I/OD. APNs who are educated to assess adults and older
adults can help to remove the barriers of care for people with I/OD and improve their quality of
life.
Limitations
There are several limitations in this project. A significant limitation is the lack of
research and information on aging with the three I/ODs covered in the modules: Down syndrome,
9
cerebral palsy, and autism spectrum disorder. In part, the lack of research is due to the recent
increase in life span for persons with I/OD. Healthcare policy and resources for education are
lacking in this area as well. This project is limited to addressing aging in only three of the most
prominent disabilities. In addition, this project has been created for advanced practice nurse
education, however pre-licensure nursing students could also benefit from this education.
Online learning has certain innate limitations due to technology (Marra & Jonassen,
2001; Song, Singleton, Hill & Hwa Koh, 2004). The online modules could also be a limitation as
some learners prefer face to face learning related to the lack of an immediate response from an
instructor and missing out on a sense of community created by in-classroom learning (Marra &
Jonassen, 2001; Richardson & Swan, 2003; Song et al., 2004). In addition to the perceived lack
of immediacy, another limitation is the lack of a social presence in online learning (Richardson &
Swan, 2003). The limitations of online learning can be mediated by clear assignment
instructions, and objectives and quick response and feedback from the teacher.
Definition of Terms
Down Syndrome
“Down syndrome is a condition in which a baby is born with an extra chromosome.
Chromosomes are small “packages” of genes in the body. They determine how a baby’s body
forms during pregnancy and how, as the baby grows in the womb and after birth, the baby’s body
functions. Normally, a baby is born with 46 chromosomes. Babies born with Down syndrome
have an extra copy of one of these chromosomes. This extra copy changes the body’s and brain’s
normal development and causes mental and physical problems for the baby.
Even though people with Down syndrome might have some physical and mental features
in common, symptoms of Down syndrome can range from mild to severe. Usually, mental
10
development and physical development are slower in people with Down syndrome than in those
without it.” (UC Davis Mind Institute, Down syndrome, 2012)
Cerebral Palsy
“Cerebral palsy refers to a group of disorders that affect a person's ability to move and to
maintain balance and posture. It is due to a non-progressive brain abnormality, which means that
it does not get worse over time, though the exact symptoms can change over a person's lifetime.
People with cerebral palsy have damage to the part of the brain that controls muscle
tone. Muscle tone is the amount of resistance to movement in a muscle. It is what lets you keep
your body in a certain posture or position.” (UC Davis Mind Institute, Cerebral Palsy, 2012)
Autism Spectrum Disorders
“According to the most recent statistics from the Centers for Disease Control, nearly 1 in
88 children born today have or will eventually have autism. That means that an estimated 1.5
million Americans and their families struggle with a neurodevelopmental disorder that can limit a
child's lifelong potential for independence. Autism has no cure yet. Its symptoms and severity
differ among individuals with the same diagnosis, yet all affected by the disorder have impaired
communication skills, difficulties initiating and sustaining social interactions and restricted,
repetitive patterns of behavior and/or interests.
One of the major roadblocks to understanding the causes of and finding effective
treatments for autism is that it has diverse outcomes. Some individuals have seizures, but others
do not. Some have troubling gastrointestinal problems, but others have none. Some have severe
developmental delays, but others have normal or even enhanced IQs. This heterogeneity raises
the possibility that there are several types of autism, with a variety of causes. This complexity
limits both scientific progress and the development of effective treatments. Thus far, research on
11
autism has not produced precise definitions of autism subtypes based on biomedical and
behavioral characteristics.” (UC Davis Mind Institute, Autism Spectrum Disorders, 2012)
Organization of Remaining Chapters
The inequities of health and wellness experienced by persons with intellectual and
developmental disabilities are recognized worldwide (World Health Organization, 2000). It is
also recognized that there is a major gap in research literature on adults aging with I/OD, and
healthcare providers are not prepared to care for individuals with I/OD (Service & Hahn, 2003;
Smeltzer et al., 2012; World Health Organization, 2000).
In the following chapters the significance of the problems are further explored as well as
a review of the evidence that supports the importance of the project. Chapter two reviews the
literature available on aging with I/OD, revealing common health conditions, nursing education
of I/OD, online education, and the transitional care model that can be utilized to facilitate
affective care for patients with I/OD. Chapter three reviews the development of the online
modules. The last chapter reviews the feedback from the focus group gathered to examine the
online modules, in comparison to the literature.
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Chapter Two
Review of the Literature
The purpose of the online modules is to educate nurses on assessment of adults with
intellectual and developmental disabilities (I/OD). Therefore, the literature review includes four
major themes, (a) adults and older adults with I/OD, (b) nursing education on intellectual and
developmental disabilities, (c) framework for the project: Naylor’s care model, and (d) online
learning is effective education. In addition pedagogical research for online learning is included.
Search Strategies
The review of literature was completed via California State University, Sacramento’s
(CSUS) library website. Articles were searched utilizing nursing multisearch and the search
engines Academic Search Premiere, CINAHL Plus with Full Text, ERIC, PsycINFO, PubMed,
Science Direct, and Cochrane Library, initially with the terms ‘geriatric education in nursing
schools’, ‘nursing education on intellectual and developmental disabilities’, ‘advanced practice
nursing’, and ‘online education’. From there, each I/OD disability topic was searched by adding
the term ‘aging’. The results for this search turned up articles that included children, so the
search was focused further on the terms ‘adults’ and ‘older adults’. No date or country of origin
limitations were set, although majority of the articles came back from within the last decade and
most from the United States, the United Kingdom, and Australia. The results returned fewer
articles on aging with autism spectrum disorders when compared with cerebral palsy. The
majority of articles returned covered aging in persons with Down syndrome. Article titles and
abstracts were used initially to determine relevancy. The articles finally used were not all
specifically pertaining to adults and older adults with I/OD. Some articles with pediatric
information were included in order to broaden personal knowledge on each disability, as well as
the future readers of this project. In addition, articles that added a more holistic view of
13
assessment were included. Several articles on I/OD education were found, most from early 21st
century. Online education is a large researched topic, so the focus was narrowed to successful
and inhibiting aspects of online education and perceptions of students.
When researching the transitional care model, using the same search engines, the search
was limited to the utilization of this model with older adults, then to older adults with disabilities.
The results of the search only pertained to older adults with cognitive impairment from delirium
and other disabilities, most physical in nature related to chronic pain, certain diseases like
multiple sclerosis, but not disabilities like cerebral palsy and the others that fall under the
category I/OD. However, the framework of TCM could easily be transferable for a focus on
adults with I/OD.
Major Themes
Adults and Older Adults with Intellectual and Developmental Disabilities
The research available on aging with I/OD is minimal. The literature search revealed a
very wide gap on this topic and the research articles that are available state the insufficient
availability of information on the topic. It is reasoned that this can partly be attributed to the
historic shorter lifespan of these individuals and the relatively short time these disabilities have
been studied. For example, autism as a disorder was first identified only 69 years ago in a group
of 11 children, and this cohort with the original diagnosis have now only recently become older
adults (Seltzer, Shattuck, Abbeduto, Greenberg, 2004). There is a large amount of research on
pediatric populations with I/OD related to causes and interventions. However, this is not so for
adults and older adults with I/OD hence the discrepancies in healthcare.
Many articles that discuss aging with I/OD lump all the disabilities together and
generalize some major themes of this large and varied group: (a) lack of continuity of care from
their adolescents to adulthood, (b) insufficient resources for adults with I/OD, (c) lack of
14
education and training for healthcare providers to properly care for individuals with I/OD, (d)
caregiver burden, and (e) diagnostic overshadowing and avoidance of care (Fahey-McCarthy et
al., 2009; Fisher, 2004; Glew & Bennett, 2011; Service & Hahn, 2003; Smeltzer et al., 2012).
Generalized age-related health problems are discussed in many of the articles such as
visual/auditory impairment, and cardiovascular disease (Fisher, 2005; National Down Syndrome
Society, 2012; Strax et al., 2010; Torr et al., 2010). Although these problems are typical of all
aging adults, routine screenings are skipped for many adults with I/OD, leading to poorer health
outcomes for this large population.
Not only do adults with I/OD have typical age-related changes, they have specific causes
that led to a poorer quality of life amplified by their disability (Strax et al., 2010). Certain
diseases can arise earlier in an adult with I/OD’s life span, for example, adults with Down
syndrome can develop dementia as early as their thirties (Coppus et al., 2006). The common
health conditions that are affecting persons with I/OD are: (a) thyroid abnormalities (National
Down Syndrome Society, 2012; Strax et al., 2010), (b) obesity (De Winter, Bastiaanse,
Hilgenkamp, Evenhuis, & Echteld, 2012; National Down Syndrome Society, 2012; Strax et al.,
2010), (c) cardiovascular disease (De Winter et al., 2012; Lifshitz, Merrick & Morad, 2008), (d)
osteoporosis/osteoarthritis (Strax et al., 2010) , (e) seizure disorder (Hayes, 2010), (f) dementia
(Coppus et al. 2006; Lifshitz, Merrick & Morad, 2008; National Down Syndrome Society, 2012),
(g) mental illness (Strax et al., 2010) , and (h) mobility issues (Coppus et al. 2006; Hayes, 2010;
National Down Syndrome Society, 2012; Strax et al., 2010). All of these conditions, if left
untreated, can put adults at risk for earlier morbidity and mortality.
15
Nursing Education on Intellectual and Developmental Disabilities
Education of nurses on intellectual and developmental disabilities in the United States is
minimal and inconsistent (Hahn, 2003; Sanders, Kleinert, Free, King, Slusher & Boyd, 2006;
Walsh, Hammerman, Josephson & Krupka, 2000). Historically, people with I/OD were
commonly institutionalized, decreasing the necessity of education for the general nursing
population, however this has not been the reality for the past several decades as more people with
I/OD are living in the community (Walsh et al., 2000; Sanders et al., 2006). Now as the complex
healthcare for persons with I/OD has spread across a variety of settings, there is an increased need
for knowledge and technical skill among nurses and training to take on leadership roles in
advocating for persons with I/OD (Tommet et al., 1993). A small number of universities have
developed nursing master degrees with a focus on “special needs” populations, however in
several surveys nurses continue to report little to no training to care for persons with I/OD (Hahn,
2003; Walsh et al., 2000). Despite this lack of education, the surveys also revealed that nurses
report a high level of satisfaction after receiving education on I/OD (Hahn, 2003). Walsh et al.
(2000) conducted a survey of 500 nurses in New Jersey, inquiring about their educational
experience with I/OD. Eighty-seven percent of the nurses surveyed had interactions with patients
with I/OD, but only one quarter of the nurses report having “only some” and “a little” education
on I/OD. The general consensus of the nurses surveyed was I/OD education should be included in
nursing curriculum. Unfortunately, similar to geriatric education, there are factors preventing the
development of I/OD curriculum in nursing schools including time constraints, lack of faculty,
and lack of interest or expertise on I/OD (Gilje et al., 2007; Hahn, 2003).
Hahn (2003), Walsh et al. (2000) and Sanders et al. (2006) make convincing arguments
for the integration of I/OD education into nursing curriculum, however the situation has not
drastically changed since those since those studies, some a decade old. Tommet et al. (1993)
16
conducted a focus group of 25 nurses who work in a variety of settings but all care for children
and adults with I/OD. The nurses unanimously agreed that there must be an academic emphasis
to prepare nurses to care for individuals with I/OD. The nurses in the focus group also discussed
the importance of transition planning and interdisciplinary cooperation for consistency and
continuity of care. They also identify a need for education of I/OD in both undergraduate and
graduate level nursing program.
Werner and Grayzman’s (2011) research found that negative attitudes towards caring for
persons with I/OD was potentially correlated to the lack of education of I/OD. The study
recommends that programs that aim to change the attitude are needed, by way of mandatory
classes and field experience, in order to increase the interest in caring for persons with I/OD.
Along the same theme, Wilson and Merrill (2002) found in the literature that healthcare
professionals may have more negative attitudes towards persons with I/OD and other types of
disabilities. Wilson and Merrill (2002) created a required undergraduate nursing course focusing
on people with I/OD. A common theme the students reported after the course was completed was
that the students had not been aware of their own biased thinking and prejudices towards persons
with I/OD; alarmed that the lack of awareness could have led to avoidance of good care for
persons with I/OD. If nurses are not educated on caring for and about persons with I/OD the
discrepancies of care will be allowed to continue.
Framework for the Project: Naylor’s Transitional Care Model
The transitional care model (TCM) has been chosen as the theoretical basis for this
project due to the common goal of improving patient outcomes as they move from hospital care
to their home in the community, and on to multiple providers and settings. Naylor, HillMilbourne et al. (2007) describe gaps in access to essential health and social services, high rates
of costly and preventable negative health outcomes, and a poor quality of life for older adults
17
without I/OD. Gaps in services, high rates of negative outcomes and poor quality of life is also a
reality faced by adults and older adults with I/OD. TCM has been demonstrated to decrease
hospital admissions thereby decreasing the cost of healthcare, and improving patient outcomes
(Naylor, Hill-Milbourne et al., 2007). In a summary of TCM, Bixby (2011) states that the model
is designed to avoid preventable negative outcomes in the most at-risk populations. Adults with
I/OD are recognized as a high-risk population and yet minimal to zero research has been done
with the TCM and I/OD. The model is applicable due to the inequities of health and the common
comorbidities suffered by persons with I/OD, compared to their adult counterparts without I/OD.
For example, Naylor et al. (2007) found that adults with cognitive impairment have higher levels
of comorbidities, and when combined with depression, often found in adults with I/OD, the
outcomes are especially poor. Naylor (2000), while making a case for TCM, points out the
devastating effect a cardiovascular illness has on a person aside from the enormous cost in
healthcare- loss of independence, disabling symptoms, high frequency of emergency department
visits. Compound those negative effects to an adult with I/OD whose health is already at high
risk of illness, and the situation becomes even clearer that the time is now to educate nurses and
utilize them as transitional care managers.
The transitional care model places nurses at the head of the interdisciplinary team, as a
transitional care manager (Bixby, 2011; Naylor, 2000; Naylor, Hill-Milbourne et al., 2007). The
nurse follows the patient across settings from hospital to their home, creating an individualized
care plan that addresses the patient’s disease processes, home care needs, and necessity for
referrals (Bixby, 2011). The nurse uses clinical judgment to determine the frequency of visits and
length of care plan, acting as a patient advocate and practicing to the broadest scope of the
regulations of nursing (Bixby, 2011; Board of Registered Nursing, 2010). The TCM could be
18
effective for improving the healthcare of adults with I/OD, and promote the advancement of
nursing practice, but first nurses must be educated.
Online Learning is Effective Education
Hahn (2003) and Sanders et al. (2006) suggest that integration of computer-assisted
learning experiences will improve the education of I/OD for nurses. Despite the drawbacks
including technology glitches, a lack of face-to-face feedback from peers and teachers, and a
missing sense of community, online learning has been an effective asset to education (Marra &
Jonassen, 2001; Song, Singleton, Hill & Hwa Koh, 2004). Online learning is not only a common
feature in university curriculum, it is also a feature expected by the current generation of students
who grew up with advanced technology (Hoffman & Dudjak, 2012). Hahn’s (2003) review of
the literature found nursing schools were receptive to using computer-based learning as a way of
integrating education into existing curriculum and web-based modules and CD-ROMs were
preferred tools. Tommet et al. (1993) recommended that “flexible educational approaches” be
used in graduate programs to recognize student’s concurrent employment. Although online
learning is an effective and complimentary tool for nursing education, it should never completely
replace the real-life interactions with a person who has an I/OD. Web-based modules should be
an adjunct to clinical experience caring for a patient with I/OD so the student can hear “the voice”
and perspective of those patients and be more prepared to care them in the future (Hahn, 2003;
Walsh et al., 2000). Online modules must meet ADA Section 508 and accessibility requirements.
Gaps in the Research
There are significant gaps in the research regarding aging and I/OD. Studies are limited
and national health policy and funding has not focused on this topic. In addition, there is little to
no specific ethnic or culturally specific data presented in the body of research on aging with
19
I/OD. There is little known about how APNs can impact the aging population despite a recent
emphasis on role expansion for nurses in this arena.
A major overarching gap in the literature is the wide spread lack of knowledge on how to
provide healthcare for persons with I/OD. It is unclear how much, if any, specific education
nurses receive about aging with I/OD. States such as California require geriatric content in the
curriculum but do not monitor or require any specific content on aging with I/OD (Board of
Registered Nursing, 2012). These apparent gaps underline the importance of this project.
20
Chapter Three
Intent of Project
This project, titled “Head to Toe: Assessments of Adults with Intellectual and
Developmental Disabilities- Education for Nurses”, provides a group of educational modules with
the purpose of teaching advanced practice nurses to accurately assess and care for adult patients
with intellectual and developmental disabilities (I/OD). This project fills a significant gap in
nursing curricula. More importantly, the project addresses the healthcare discrepancy
experienced by adults with I/OD. The care they receive is often suboptimal due to the lack of
education provided to healthcare staff. This discrepancy is not only found in nursing care but in
all areas of healthcare. As the largest healthcare force in the United States, however, nurses have
a significant role to play in raising the standards of healthcare delivery for all individuals
(Institute of Medicine, 2010).
The intended audiences for these modules are nurses in a master’s level or nurse
practitioner program. The modules can be inserted into a variety of courses including an
advanced physical assessment course. Advanced practice nurses were chosen as the audience
because of their broader scope and reach they obtain with higher degrees and potentially more
positive impact they can achieve. The transitional care model (TCM) supports advanced practice
nurses as primary care managers. However, adults with I/OD would benefit from knowledgeable
nurses on every level, so it is possible that these modules could also be used in a pre-licensure
nursing school curriculum as well.
The goals of the modules are to advance nursing programs in service of persons with
I/OD. With appropriate education, nurses can improve quality of life for adults with I/OD, reduce
fear of seeking healthcare, and help to close the healthcare inequity gap (Smeltzer et al., 2012).
Smeltzer et al. (2012) conducted a qualitative study published last April, in which they
21
interviewed 35 adults with I/OD in focus groups with the objective of capturing the perceptions
of their encounters with nurses and other healthcare staff during a hospitalization. The focus
groups used semi-structured interview questions that allowed the participants to describe their
experiences in healthcare and to build on each other comments. The major themes pulled from
the interviews were: (a) poor communication on the part of nursing staff, (b) compromised care or
lack of competence of providers, (c) negative attitudes on the part of nursing staff, and (d)
participants’ fears related to quality of care. The modules aim to address the themes reported by
Smeltzer et al. (2012)- improve communication, improve competence, extinguish negative
attitudes, and allay patient’s fears by improving healthcare safety and quality.
Development of the Modules
The modules were created with the computer program Microsoft Word 2000, utilizing the
webpage format and creating hyperlinks for access to the Internet, with support from the student
employees of CSUS’s Information Resources and Technology (IRT) service desk. The home
page of the modules (Appendix A) is available on any Internet browser at the website:
http://webpages.csus.edu/~cb2985/. From the home page, the other modules and assessment
pages are accessible. The modules are also available in their original Word format and can be
saved and transferable on a flash drive or CD-ROM. Several peers aided in testing the function
of the modules and found them to be user-friendly and the format intuitive. The HiSoftware®
Cynthia Says™ Portal (http://cynthiasays.com/) which is a “web content accessibility validation
solution”, was used to “identify errors in design related to Section 508 standards and the WCAG
guidelines.” On initial verification with cynthiasays.com, the only errors included needing to use
alternative text for the pictures and wordart. The errors were corrected and the webpages were
verified with cynthiasays.com a second time resulting in a website that passed Section 508
standards (Appendix B).
22
The creation of the modules was guided by a familiarity with online classes, several userfriendly formatted example websites, for example Preservice Health Training Modules (2010),
and online resources for good web design (Las Positas College, n.d.; University of Arkansas at
Little Rock, n.d.). Hou (2012) reviews 6 strategies and tips on writing and designing easy-to-use
health websites: (a) learn about the users and their goals, (b) write actionable content, (c) display
content clearly on the page, (d) organize content and simplify navigation, (e) engage users with
interactive content, and (d) evaluate and revise the site. These modules are meant to be
accessible and individualized by any nursing program that wishes to use them and therefore does
not contain a discussion board, or internal email, meant to create an online community. It is
recognized however that students value online learning for its accessibility, but find its drawbacks
to be the lack of face-to-face time with the instructors and a slow response time for feedback
(Marra & Jonassen, 2001; Richardson & Swan, 2003; Song et al., 2004). When these modules
are used in a nursing program, therefore, it is their responsibility to provide the feedback to the
students assigned to the modules.
Organizing the information on each page, specifically for the ‘head to toe’ assessments,
the textbook Physical Examination & Health Assessment, 4th Edition, was used as a format for
title descriptions, for example ‘head and neck’ (Jarvis, 2004), as well as for some general
assessment questions. The content of the modules was based on a comprehensive review of the
literature and information from the Center for Excellence in Developmental Disabilities at
University of California Davis Medical Investigation of Neurodevelopmental Disorders (MIND)
Institute and the Centers for Disease Control and Prevention (CDC). In addition, a recognized
community expert in transition and aging, Sharon Galloway, Transition Through Adulthood
Projects Coordinator at the Center for Excellence in Developmental Disabilities, the program that
provided funding for this project.
23
Project Overview
The modules consist of a home page with links to the main pages for module one on
communication, module two on aging with Down syndrome, module three on aging with cerebral
palsy, and module four on aging with autism spectrum disorder. Each main page has a section at
the bottom with references and a section with supplemental information, with links to websites
like the National Down Syndrome Society, the CDC and Disability is Natural website.
The student user is intended to read through each module at their own pace, a benefit of
online learning (Richardson & Swan, 2003). The modules are described as module one through
four, but the student may review the ASD module before the CP module, for example. However,
it is recommended that the student begin with the home page and review the communication
module before the other three.
Home Page
The home page (Appendix A) introduces the main goals of the modules, and gives a brief
description of each. The home page has the Federal and California definition of developmental
disabilities. Below the definitions the user is shown some icons that they will see throughout the
modules, that prompt the user to consult another member of the interdisciplinary team, for
example a physical therapist or a dietician.
Module One: Communication
The objectives for module one on communication are:
After completing the module,
1. The nurse will be able to apply new communication skills to their preexisting
understanding of therapeutic communication.
2. The nurse will be able to demonstrate skills of interacting and facilitating understanding
with their patients.
24
3. The nurse will be able to substitute “person first language” for outdated prejudiced terms
and teach others to do the same.
Module one reviews the importance of respect in language usage for persons with I/OD by using
person first language. For example it instructs the reader to place the person first, before the
disability- “Adult with cerebral palsy” instead of “handicapped.” Next it gives tips on how to
interact with a person with an intellectual or developmental disability. The first tip is, “Never
make assumptions regarding a person’s abilities, emotions about how people feel about their
conditions, or that they need assistance.” Lastly, there are tips on facilitating understanding, for
example “Find a quiet environment for your assessment” and “Talk directly to your patient, even
if they have a companion or caregiver in the room with them.” The bottom of the page has
references and supplemental information that include links to actual assessments that give an
example of excellent communication skills (Disability is Natural, 2010; Human Developmental
Institute-University of Kentucky, 2010).
Module Two: Down Syndrome
Module two is on aging with Down syndrome (DS). The homepage for module two
includes an overview of the disability, objectives for the user, epidemiology of the disability then
a list of what is to be addressed in the head to toe assessments. The objectives for module two
are:
After completing the module,
1. The nurse will be able to describe the possible findings in a physical assessment of an
adult with Down syndrome.
2. The nurse will be able to apply new assessment knowledge to their baseline skills.
The assessments are links themselves which when clicked on, take the user to that specific
assessment. For example, clicking on the head and neck link sends the user to the page that
25
addresses dementia, mental health, hypothyroidism, obstructive sleep apnea, and perception. The
diseases or general areas to assess have bullet points on the important information then a list of
important assessments the nurse should include. Some words are links to definitions, but if the
user does not have basic familiarity with the condition or syndrome, then they would need to take
the extra initiative to research words or diseases for background information. However most of
the diseases addressed are very common in healthcare and ones that APNs should already have a
general knowledge of. After the assessment links there is a brief section on medication
management and healthcare maintenance. These are added as reminders to the nurse that
medications play a part in the assessment, and wellness screening and preventative measures such
as vaccinations. Finally, like module one, there is supplemental information, and a list of
references that support the material covered in the module, collected from the review of literature
on aging with Down syndrome.
Module Three: Cerebral Palsy
Module three addresses aging with cerebral palsy (CP) with a similar format as module
two. The objectives are:
After completing the module,
1. The nurse will be able to describe the possible findings in a physical assessment of an
adult with CP.
2. The nurse will be able to apply new assessment knowledge to their baseline skills.
3. The nurse will be able to identify the changes of aging that may arise earlier in adults
with CP.
It is important to note that not all the areas of assessment are links. This is because there were no
significant differences for the assessment in these areas, as shown by the literature review. For
CP, for example, the heart, peripheral vascular system and lymphatic system assessment does not
26
have a link because there is no significant difference for assessing an adult with CP. The rest of
the format is similar to module two with slight variations to make it specific to CP.
Module Four: Autism Spectrum Disorder
Module four reviews aging with autism spectrum disorder (ASD). The objectives are:
After completing the module,
1. The nurse will be able to apply this knowledge to effectively assess an adult with ASD.
2. The nurse will be able to identify ASD characteristics in an undiagnosed adult.
3. The nurse will be able to describe the types of behavior common to ASD and ways to
respect adult’s social limitations.
Autism spectrum disorder’s homepage is formatted like module two and three. The assessments
section, are not in a head to toe format however, because unlike DS and CP there are not common
physical ailments to identify in assessment. Therefore the assessments were grouped into
behavioral, mental health, and seizure disorder. Each topic’s link has a similar format to the other
assessment links of DS and CP.
The modules were created using information gathered from the review of literature. Each
module has references and supplemental information included for the student, not only justify the
information but for the student to expand upon the knowledge in the modules. The accuracy of
the information on aging with I/OD was also confirmed and reviewed by a focus group; the
assessment questions reviewed and edited by an expert nurse.
27
Chapter Four
Project Evaluation
In October 2012, the educational modules were reviewed and discussed by a focus group
of six people, moderated by the project developer. Sharon Galloway facilitated the coordination
of recruitment of these individuals and was a participant herself. The participants were chosen
from convenient samples, individuals that Sharon works with or knew from her many years of
experience working with adults with intellectual and developmental disabilities (I/OD). In
addition, one of the participants was recruited by the project developer, an adult friend with
cerebral palsy. All of the participants had a personal interest in this project as it relates to their
personal lives or professions, or both. However, none of them were nurses or in the healthcare
field. The focus group was held in a small conference room in the University of California, Davis
Mind Institute in Sacramento, California. It lasted two hours and all participants were given a
thank you card with a gift card worth ten dollars, to compensate for their time.
Demographics
At the beginning of the focus group, a demographic questionnaire was given to each
participant (Appendix C) addition to demographic questions (gender, age, and ethnicity) the
participant was asked if they have an intellectual or developmental disability, and if not they how
does their experience relate to the topics about to be discussed in the focus group. The
questionnaire also assessed the participant’s level of experience with the Internet, if they have
ever taken an online class, and whether they enjoyed online classes, why or why not.
The results of the questionnaire are as follows. The age range of this group of individuals
was 24 to 50 years old. The participants included four females and two males. Three stated their
ethnicity as ‘White’, one participant stated ‘Chinese’, one stated ‘Hispanic’, and one did not
respond to the question. Two of the participants have cerebral palsy, one has autism, two
28
participants have family members with I/OD and are very active working in the I/OD community
and lastly, Sharon Galloway is a Community Inclusion Specialist working with the disability
community on a daily basis. All participants stated they use the internet frequently. Two out of
the six stated they had never taken an online class before, and the other four stated they have
taken ‘one or more’ online classes, or ‘many’. For the four that had taken an online class, the
general consensus was they enjoyed online learning and found it helpful because they were able
to do it on their own time.
Focus Group Agenda
The focus group was two-hours long and divided into four 30-minute sections (Appedix
D). Each participant had a paper copy of the modules, as well as the webpage format projected
on a large screen at the end of the table. After welcoming the participants and introducing the
purpose and goals of the modules, the home page and module one on communication were
reviewed. In the second half hour, module two on aging with Down syndrome was reviewed
followed by a short break. After the break, module three on aging with cerebral palsy was
reviewed. Lastly, module four on aging with autism spectrum disorder was reviewed. During
each review period, questions were asked of the participants relating to the modules. The basic
essence of the questions were, (a) what is your overall impression of these web pages?, (b) does
the information appear to be correct and consistent with your experience?, (c) what additional
questions might you want your nurse to ask?
Focus Group Themes Related to Literature
Communication
Communication was a major topic discussed by the focus group participants. The review
of the communication module produced useful feedback on instructions to add and parts of the
module to clarify. Examples of the feedback include, “if the patient has a hearing device, don’t
29
turn away [referring to the nurse], don’t move away, and look them in the face [during an
assessment]; “have the patient restate back what the nurse said, for understanding”; “people [born
with a disability] don’t wish away the disability- they are comfortable with it.”; “if a caregiver
states something [about your patient], confirm with your patient the accuracy of the
information.”; “let the patient self-advocate [during assessment], and allow the caregiver to leave
the room.” A clarification discussed was the tip that “Adults should always be treated as adults.”
One of the participants voiced that while she agreed that adults should be treated as adults first,
the nurse should also make sure any information or instructions given to the patient is at their
educational and/or intellectual level. The rest of the group agreed. Another participant who has
cerebral palsy stated that she has personally experienced healthcare workers speaking to her like
she was a child, when in fact she is an educated mother, living independently in the community.
The instruction that “adults should always be treated as adults” was very important to her.
The feedback on communication reflects what is found in the literature. Adult patients
with I/OD often feel sidelined during their healthcare experiences. If they have a family member
or caregiver with them, the healthcare provider, often a nurse, will speak with them as if the
patient is not in the room (Smeltzer et al., 2012). Also, patients feel they are not listened to
regarding their own health and habits which makes their time in the hospital scary (Smeltzer et
al., 2012). Indeed, even from a nurses point of view, they [nurses] sometimes prefer to speak
with a family member or caregiver if communication is slower because time restrictions,
specifically in a hospital setting (Hemsley, Balandin, & Worrall, 2011). Not allowing their
patient the time to communicate and be the experts on their disability they have lived with their
whole lives, is a form of marginalization (Northway, 1997). Not only are persons with I/OD at
risk for marginalization, they are often victims of abuse.
30
Abuse Screening
Another major theme discussed during the review of the modules, was the importance of
abuse screening. Several of the participants were adamant about the modules focusing more on
the nurse screening for abuse because people with I/OD are at higher risk of being victimized
then their adult counterparts without I/OD. And in fact, the participants concerns proved to be
accurate when compared with available literature. Persons with an I/OD suffer from abuse four
to ten times more frequently, and are at a higher risk for re-victimization and abused for longer
periods of time (Morrison et al., 2003). The culprits are often people they know and who may be
responsible for their care. These facts highlight the importance of asking the caregiver to leave
during an assessment, if only for a brief time to allow the patient a safe space if needed. Also,
before a patient would be willing to share any personal information, the nurse must build trust by
allowing the patient time to communicate. Much crucial information can be lost by rushing
through an assessment. Returning to the issue of overshadowing problems, some abused patients
may present as having a mental illness or challenging behaviors (Eastgate et al., 2012), and may
be misdiagnosed without the real problem being dealt with. To jump to conclusions about new
unexplained symptoms may be the difference between stopping the abuse and allowing it to
continue.
All People Are Sexual Beings
Adults with I/OD as sexual beings was discussed at length and requested to be added to
the each assessment module. Per the focus group, sexual activity among persons with I/OD is
often overlooked for several reasons including the taboo nature of discussing sexuality, and the
incorrect assumption that persons with I/OD do not participate in sexual activity. The
consequences of not discussing sexuality with patients on assessment, can lead to poor outcomes
like unwanted pregnancies, painful intercourse, sexually transmitted diseases, and sexual abuse
31
(U.S. Department of Health & Human Services, 2001). The input from the focus group is based
on their personal and professional experience, and supported by the literature. Futcher (2011)
conducted a literature review to determine the attitudes of families and staff towards the sexuality
of adults with learning disabilities. The common theme was that more training was needed to
increase the incidence of sexual education among persons with I/OD (Futcher, 2011). Despite a
small sample size, Eastgate et al. (2012) also determined that more education is needed and some
common themes from the participants in their focus group were a lack of knowledge on sexual
protection, and forming safe intimate relationships. Although the past decade has shown an
increase in sex education for persons with I/OD, it is still inconsistent and often the information
will come from the media, leading to inaccurate perceptions of sexuality (McCabe, 1999). Every
interaction with a patient is an opportunity to introduce sexual education.
Personal Experiences
The rest of the feedback on the modules from the focus group were from personal
experiences the participants had, and could be helpful to nurses to broaden their understanding of
assessing adults with I/OD. While reviewing the modules on ‘Aging with Cerebral Palsy’, the
assessment of mobility was the focus of the discussion. Participants felt nurses should always
assess for their patients’ exercise regime, use of alternative therapies (for example, massages and
water therapy) to improve mobility, and use of and access to durable medical equipment (walkers,
wheelchairs, grab bars, etc.). A very useful piece of information from one of the participants was
that patients with cerebral palsy might appear more rigid then they normally are due to the stress
and higher level of anxiety when interacting with a healthcare provider. Also, an arm or leg that
might appear forever fixed in a contracture may unintentionally spasm and could hit the care
provider. Both of these tidbits are important for nurses to know so appropriate and accurate
interventions and referrals are made.
32
Reviewing the modules on ‘Aging with Autism Spectrum Disorder’ also highlighted
some personal experiences important for nurses to know. One of the participants described
autism as an “invisible disability”. In her experience with two children with autism, strangers
often misinterpret their behavior and “bad” because they don’t perceive the kids to have a
disability. According to this participant, this also makes interactions with healthcare providers
more difficult because she has to remind them frequently of the extra care they need to take when
assessing her children. The participants recommended adding the sensory issues people with
autism have; certain lighting and noises, however imperceptible to the provider, can distract the
person with autism and make the assessment intolerable for them. It was recommended that a
white noise machine be used during assessments or allow your patient to have head phones on
with their choice of sounds/music. The patient can still hear you and it allows them to block out
the other sounds. Textures of medical equipment and touching can be problematic so nurses need
to talk through the procedure with their patient and ask permission to touch them, allowing them
to look over the equipment the nurse plans to use. An extra tidbit added by one of the participants
who works closely with adults with autism, was that some people with autism will appear to
never make direct eye contact with an object the nurse is trying to show them, but it does not
mean they do not see it.
The personal experiences of the focus group participants were incorporated into the
modules. Although the situations discussed by the participants might not pertain to all persons
with I/OD, nursing education is more comprehensive when nurses can learn about their patient’s
lived experiences. The feedback from the focus group was invaluable and this project was made
stronger from their stories and wisdom. Like the saying goes, “Nothing about us, without us.”
33
Conclusions and Recommendations
Excellent quality healthcare is a right deserved by all humans, however people with
intellectual and developmental disabilities (I/OD) have historically been marginalized and denied
quality healthcare as a population despite their often increased need for advocacy and support.
The backlash of the poor healthcare provided, has further alienated persons with I/OD, who are
often fearful of seeking help due to negative experiences. Consequently conditions that are
preventable and easily treatable can significantly impact their quality of life and lead to morbidity
and early mortality.
The independent function of nursing includes addressing the quality of life of our patients
through advocacy and practicing evidence-based preventative health (Board of Registered
Nursing, 2010). Nurses can take the lead in bringing this huge gap in equal rights to focus.
Supported by our own standards of practice (Board of Registered Nursing, 2010), the most recent
Institute of Medicine’s ‘Future of Nursing’ report (2010), and the sheer amount of nurses in the
United States workforce (and worldwide), nurses must take ownership of our practice and amend
this oversight. Education is the starting point.
At the beginning of this project, it was discovered that while children with I/OD receive a
lot of attention in research, once adulthood is reached, the information decreases drastically.
Many reasons are attributed including that historically children with I/OD did not live into
adulthood (Torr et al., 2010). Because of this there is limited information on aging with I/OD
(Service & Hahn, 2003). Despite the limitations in the research, a broad literature review resulted
in ample information that can be a starting point for educating nurses on assessment of adults
with I/OD, it was just a matter of gathering the data.
This project addresses the need for education on intellectual and developmental
disabilities in the healthcare community. It focuses on teaching APN assessment skills specific to
34
adults with Down syndrome, cerebral palsy, and autism. The assessments are provided in an
online module format so the information can be easily inserted into any nursing curriculum. The
content is in language meant for English-speaking APNs, therefore in its current format could be
used in any nursing masters degree programs or nursing practitioner program.
The content is not meant to deny non-English speakers of this gathered data, and if these
modules prove to be useful, a recommendation would be to make it accessible in more languages.
Also, although this project targets APNs, pre-licensure nurses should learn this information too.
Indeed, it is recommended that all members of the healthcare team learn this information, tailored
to their own practice.
This project focuses on nursing education, but by no means, is this just a nursing
problem. The issue is pervasive in all healthcare, and the larger society (Healthy People, 2010;
World Health Organization, 2000). However, nurses have a unique opportunity to make a
difference because of the nature of nursing as not just a job, but a calling. Many nurses who have
taken ownership of their professional role, carry it around even when they are not at their job site.
This makes the potential for change even greater, and presently, a change that is imperative is the
improvement of healthcare for people with intellectual and developmental disabilities.
35
Appendix A
Sample Screen Shots
Home Page. This is the first page the student encounters, with an introduction to the
modules, what is contained in each, and the links to the other modules.
36
Module one. Provides the student with practical tips on interacting and facilitating
communication with their patients.
37
Module two. This is the home page for assessing an adult with Down syndrome. This
contains the links to the head to toe assessments.
38
Module three. This is the home page for assessing an adult with cerebral palsy.
39
Module four. This is the home page for aging with autism spectrum disorder.
40
Appendix B
Section 508 Standard Results
Verification Checklist
Checkpoints
508 Standards, Section 1194.22
Passed
Yes No Other
A. 508 Standards, Section 1194.22, (a) A text equivalent for every non-text Yes
element shall be provided (e.g., via "alt", "longdesc", or in element content).








Rule: 1.1.1 - All IMG elements are required to contain either the alt
or the longdesc attribute.
o No invalid IMG elements found in document body.
Rule: 1.1.2 - All INPUT elements are required to contain the alt
attribute or use a LABEL.
o No INPUT Elements found within document
Rule: 1.1.3 - All OBJECT elements are required to contain element
content.
o No OBJECT elements found in document body.
Rule: 1.1.4 - All APPLET elements are required to contain both
element content and the alt attribute.
o No APPLET elements found in document body.
Rule: 1.1.6 - All IFRAME elements are required to contain element
content.
o No IFRAME elements found in document body.
Rule: 1.1.7 - All Anchor elements found within MAP elements are
required to contain the alt attribute.
o No MAP elements found in document body.
Rule: 1.1.8 - All AREA elements are required to contain the alt
attribute.
o No AREA elements found in document body.
Rule: 1.1.9 - When EMBED Elements are used, the NOEMBED
element is required in the document.
o No EMBED elements found in document body.
B. 508 Standards, Section 1194.22, (b) Equivalent alternatives for any
multimedia presentation shall be synchronized with the presentation.



Rule: 1.4.1 - Identify all OBJECT Elements that have a multimedia
MIME type as the type attribute value.
o No OBJECT elements found in document body.
Rule: 1.4.2 - Identify all OBJECT Elements that have a 'data'
attribute value with a multimedia file extension.
o No OBJECT elements found in document body.
Rule: 1.4.3 - Identify all EMBED Elements that have a 'src' attribute
N/A
41
Verification Checklist
Checkpoints
Passed
value with a multimedia file extension.
o No EMBED elements found in document body.
C. 508 Standards, Section 1194.22, (c) Web pages shall be designed so that
all information conveyed with color is also available without color, for
example from context or markup.
D. 508 Standards, Section 1194.22, (d) Documents shall be organized so
they are readable without requiring an associated style sheet.

Note: Document uses external stylesheets, inline style information,
or header style information.
E. 508 Standards, Section 1194.22, (e) Redundant text links shall be
provided for each active region of a server-side image map.


Rule: 1.2.1 - Locate any IMG element that contains the 'ismap'
attribute.
o No IMG elements found in document body that contain the
'ismap' attribute.
Rule: 1.2.2 - Locate any INPUT element that contains the 'ismap'
attribute.
o No INPUT elements found in document body.
F. 508 Standards, Section 1194.22, (f) Client-side image maps shall be
provided instead of server-side image maps except where the regions cannot
be defined with an available geometric shape.


Rule: 9.1.1 - No IMG element should contain the 'ismap' attribute.
o No server-side image map IMG elements found in
document body.
Rule: 9.1.2 - No INPUT element should contain the 'ismap'
attribute.
o No INPUT elements found in document body.
G. 508 Standards, Section 1194.22, (g) Row and column headers shall be
identified for data tables.

N/A
Rule: 5.1.1 - Identify all Data TABLE elements.
o Note: Data TABLE Element found at Line: 541, Column: 1.
H. 508 Standards, Section 1194.22, (h) Markup shall be used to associate
N/A
42
Verification Checklist
Checkpoints
Passed
data cells and header cells for data tables that have two or more logical
levels of row or column headers.

Rule: 5.2.1 - Identify all Data TABLE elements.
o Note: Data TABLE Element found at Line: 541, Column: 1.
I. 508 Standards, Section 1194.22, (i) Frames shall be titled with text that
facilitates frame identification and navigation.

N/A
Document is not a FRAMESET Page.
J. 508 Standards, Section 1194.22, (j) Pages shall be designed to avoid
causing the screen to flicker with a frequency greater than 2 Hz and lower
than 55 Hz.


Rule: 7.1.1 - Documents are required not to contain the BLINK
element.
o No BLINK elements found in document body.
Rule: 7.1.2 - Documents are required not to contain the MARQUEE
element.
o No MARQUEE elements found in document body.
K. 508 Standards, Section 1194.22, (k) A text-only page, with equivalent
information or functionality, shall be provided to make a web site comply
with the provisions of this part, when compliance cannot be accomplished in
any other way. The content of the text-only page shall be updated whenever
the primary page changes.
(k) Option A - Check for the string 'Text Version' within the document.
N/V
(k) Option B - Check for a Global Text Version Link within the document.
N/V
(k) Option C - Check for an Accessibility Policy Link within the document.
N/V
L. 508 Standards, Section 1194.22, (l) When pages utilize scripting
Yes
languages to display content, or to create interface elements, the information
provided by the script shall be identified with functional text that can be
read by assistive technology.

Rule: 6.3.1 - Anchor elements are required not to use javascript for
the link target when the NOSCRIPT element is not present in the
document. These elements will not cause a failure of the checkpoint
if the NOSCRIPT element is found, however, they will be
identified.
43
Verification Checklist
Checkpoints
Passed
o



No Anchor elements that use javascript for the link target
were found in document body.
Rule: 6.3.2 - AREA elements are required not to use javascript for
the link target when the NOSCRIPT element is not present in the
document. These elements will not cause a failure of the checkpoint
if the NOSCRIPT element is found, however, they will be
identified.
o No AREA Elements found in document body.
Rule: 6.3.3 - Locate elements that use HTML event handlers.
o Note: This rule has not been selected to be verified for this
checkpoint.
Rule: 6.3.4 - When SCRIPT Elements are used, the NOSCRIPT
element is required in the document.
o No SCRIPT elements found in document.
M. 508 Standards, Section 1194.22, (m) When a web page requires that an
applet, plug-in or other application be present on the client system to
interpret page content, the page must provide a link to a plug-in or applet
that complies with §1194.21(a) through (l).




Yes
Rule: 6.3.5 - All OBJECT elements are required to contain element
content.
o No OBJECT elements found in document body.
Rule: 6.3.6 - All APPLET elements are required to contain both
element content and the alt attribute.
o No APPLET elements found in document body.
Rule: 6.3.7 - When EMBED Elements are used, the NOEMBED
element is required in the document.
o No EMBED elements found in document body.
Rule: 6.3.8 - All pages that have links to files that require a special
reader or plug-in are required to contain the specified text indicating
a link to the reader or plug-in.
o Note: This rule has not been selected to be verified for this
checkpoint.
N. 508 Standards, Section 1194.22, (n) When electronic forms are designed
to be completed on-line, the form shall allow people using assistive
technology to access the information, field elements, and functionality
required for completion and submission of the form, including all directions
and cues.
O. 508 Standards, Section 1194.22, (o) A method shall be provided that
permits users to skip repetitive navigation links.
N/A
44
Verification Checklist
Checkpoints

Passed
Rule: (o).1 - All pages are required to contain a bookmark link to
skip navigation that has the specified text in either the link text or
the 'title' attribute value.
Skip Navigation Text:
o Note: This rule has not been selected to be verified for this
checkpoint.
P. 508 Standards, Section 1194.22, (p) When a timed response is required,
the user shall be alerted and given sufficient time to indicate more time is
required.
Checkpoint Result Legend: Yes = Passed Automated Verification, No = Failed Automated
Verification, Warning = Failed Automated Verification, however, configured not to cause page
to fail (Priority 2 or 3 only), N/V = Not selected for verification, N/A = No related elements were
found in document (Visual only), No Value = Visual Checkpoint
HiSoftware Alt Text Quality Report
Verified File Name: http://webpages.csus.edu/~cb2985/
Date and Time: 11/13/2012 11:50:33 AM
Passed Automated Verification
Verification Checklist
Checkpoints
Passed
Yes No Other
1.1 Validate that the alt text does not use the word image When users Yes
add alternative text to an image they tend to add the word "Image" when
it really says nothing about the image, but describes the object versus the
meaning of the object. This check will fail a page for the use of the word
image in the alternative text.
Image alternative text does not contain the word "Image"
1.2 Validate that the alt text does not contain the text: .jpg, .gif, .bmp, Yes
.jpeg Many content creation tools will automatically add alternative text
when you add an image to your content. The text is generally the image
name. Validate that: .jpg, .gif, .bmp, .jpeg, are not found in the alt text.
45
Verification Checklist
Checkpoints
Passed
Image Alternative Text does not contain: .jpg, .gif, .bmp, .jpeg
1.6 Validate that the alt text does not contain the text "image" Many Yes
content creation tools will automatically add alternative text when you
add an image to your content. The text is generally the image name or the
word image with a number associated, like image001. This checkpoint
will fail a page if the string image is found in the alternative text.
Image Alternative Text does not contain the text "image"
Warning
2.1 Validate that Alternative Text is greater than 7 and less than 81
characters in length Short alternative text may not be valid, warn the
report user if alternative text was found that is less than seven characters
in length. Additionally alternative text should not be larger than 80
characters, if the alt text is greater the long description attribute should be
used. This check validates that the alt attribute does not exceed 80
characters in length.
The alternative text failed the minimum/maximum allowed characters
check



Note - img Element at Line: 3200, Column: 29 - The alt attribute
is 135 characters.
Note - img Element at Line: 4033, Column: 37 - The alt attribute
is 103 characters.
Note - img Element at Line: 4309, Column: 37 - The alt attribute
is 89 characters.
2.2 Validate that Alternative Text is not used to repeat
words Alternative text should not be used to simply hide words with the
hope of increasing your ranking on search engines. If you repeat a word
more than 5 times your page may not be indexed.
Yes
The alternative text passed the maximum allowed repeated words check
Checkpoint Result Legend: Yes = Passed Automated Verification, No = Failed Automated
Verification, Warning = Automated Verification Warning, N/V = Not Verified, N/A = No related
elements were found in document, No Value = Visual Checkpoint
Report generated by the HiSoftware Company Cynthia Agent. Powered by the AccMonitor
Compliance Server HiSoftware, Cynthia Says, AccMonitor Compliance Server, Cynthia Agent
are all trademarks of HiSoftware Inc. (www.hisoftware.com 603.578.1870 or 1.888.272.2484)
46
Appendix C
Demographic Questionnaire
1. Male or Female (circle one)
2. Age:
3. Ethnicity:
4. Do you have an intellectual or developmental disability? If so, please state which one.
5. If not, how does your experience relate to these topics? Please clarify.
6. Would you say you use the Internet RARELY, SOMETIMES, FREQUENTLY (please
circle one)
7. Have you ever taken an online class? NEVER, ONE OR MORE, MANY (please circle
one)
8. If you circled ONE OR MORE or MANY, did you enjoy the online class experience?
Please briefly explain below.
47
Appendix D
Focus Group Agenda
October 12th, 2012
9:30 – Welcome and Introduction
9:35 – Review ‘Home Page’ and ‘Module One: Communication’ with discussion
Questions:
1. What is your overall impression of these web pages?
2. Do you feel the tips on communication are accurate?
3. What would you add? Remove?
10:00 – Review and discuss ‘Module Two: Aging with Down Syndrome’
Questions:
1. What is your overall impression of these web pages?
2. Does the information appear to be correct and consistent with your experience?
3. What additional questions might you want your nurse to ask?
10:30 – Short Break
10:35 – Review and discuss ‘Module Three: Aging with Cerebral Palsy’
Questions:
1. What is your overall impression of these web pages?
2. Does the information appear to be correct and consistent with your experience?
3. What additional questions might you want your nurse to ask?
11:00 – Review and discuss ‘Module Four: Aging with Autism Spectrum
Disorder’
Questions:
1. What is your impression of these web pages with their different format?
2. Does this information appear correct and consistent with your experience?
3. Given the broad spectrum of Autism, what other information might the nurse need to
know?
11:30 – Final comments and Adjourn
Thank you for your participation!
48
References
Administration on Aging. (2011). Aging statistics. Retrieved from
http://www.aoa.gov/aoaroot/aging_statistics/index.aspx
Ballin, L., & Balandin, S. (2007). An exploration of loneliness: Communication and the social
networks of older people with cerebral palsy. Journal of Intellectual and Developmental
Disability, 32(4), 315-327.
Benner, P, Sutphen, M., Leonard, V., & Day, L. (2009). Educating nurses: A call for radical
transformation. San Francisco, CA: Jossey-Bass.
Bixby, M. B. (2011). Evidence-based transitional care for chronically ill older adults and their
caregivers. Journal of Geriatric Care Management, 21(2). 21-24. Retrieved from
http://www.caremanager.org/wp-content/uploads/GCM_journal_Dec2011_FINAL.pdf
Board of Registered Nursing. (2010). California nursing practice act- Scope of regulation
excerpt from business and professions code division 2, chapter 6, article 2. Retrieved
from http://www.rn.ca.gov/pdfs/regulations/npr-i-15.pdf
Board of Registered Nursing. (2012). Title 16, California code of regulations- Article 3, section
1426. Retrieved from http://www.rn.ca.gov/regulations/title16.shtml#1426
Brooten, D., Naylor, M. D., York, R., Brown, L. P., Munro, B. H., Hollingsworth, A. O.,
…Youngblut, J. M. (2002). Lessons learned from testing the quality cost model of
advanced practice nursing (apn) transitional care. Journal of Nursing Scholarship, 34(4),
369-375.
49
Centers for Disease Control and Prevention. (2012). Chronic disease prevention and health
promotion. Retrieved from http://www.cdc.gov/chronicdisease/overview/index.htm
Centers for Disease Control and Prevention. (2010). Alzheimer’s disease. Retrieved from
http://www.cdc.gov/Features/Alzheimers/index.html
Coppus, A., Evenhuis, H., Verberne, G. J., Visser, F., van Gool, P., Eikelenboom, P., & van
Duijin, C. (2006). Dementia and mortality in persons with Down’s syndrome. Journal of
Intellectual Disability Research, 50(10), 768-777. doi: 10.1111/j.13652788.2006.00842.x
De Winter, C. F., Bastiaanse, L. P., Hilgenkamp, T. I. M., Evenhuis, H. M., & Echteld, M. A.
(2012). Overweight and obesity in older people with intellectual disability. Research in
Developmental Disabilities, 33, 398-405. doi:10.1016/j.ridd.2011.09.022
Department of Developmental Disabilities California. (2012). Lanterman developmental
disabilities services act. California Welfare and Institutions code division 4.5. Services
for the Developmentally Disabled Chapter 1. General Provisions. Retrieved from
http://www.dds.ca.gov/Statutes/WICSectionView.cfm?Section=4500-4519.7.htm
Disability is Natural. (2010). People first language- Let’s put the person first, not the
disability! Retrieved from http://www.disabilityisnatural.com/explore/pfl
Eastgate, G., Scheermeyer, E., van Driel, M. L., & Lennox, N. (2012). Intellectual
disability, sexuality and sexual abuse prevention- A study of family members and support
workers. Australian Family Physician, 41(3), 135-139.
Fahey-McCarthy, E., McCarron, M., Connaire, K., & McCallion, P. (2009) Developing an
education intervention for staff supporting persons with an intellectual disability and
advanced dementia. Journal of Policy and Practice in Intellectual Disabilities, 6(4) 267275.
50
Fisher, K. (2005). Aging with mental retardation: Increasing population of older adults with MR
require health interventions and prevention strategies. Geriatrics, 60(4), 26-29.
Fisher, K. (2004). Health disparities and mental retardation. Journal of Nursing Scholarship, 36
(1), 48-53.
Futcher, S. (2011). Attitudes to sexuality of patients with learning disabilities: A review. British
Journal of Nursing, 20(1), 8-14.
Gilje, F., Lacy, L., & Moore, C. (2007). Gerontology and geriatric issues and trends in U.S.
nursing programs: A national survey. Journal of Professional Nursing, 23(1), 21-29.
doi: 10.1016/j.profnurs.2006.12.001
Glew, G. M., & Bennett, F. C. (2011). Cerebral palsy grown up. Journal of Developmental
and Behavioral Pediatrics, 32(6), 469-475.
Hahn, J. E. (2003). Addressing the need for education: Curriculum development for nurses about
intellectual and developmental disabilities. The Nursing Clinics of North America, 38,
185-204. doi:10.1016/S0029-6465(02)00103-2
Hahn, J. , & Aronow, H. (2005). A pilot of a gerontological advanced practice nurse
preventive intervention. Journal of Applied Research in Intellectual Disabilities, 18(2),
131-142.
Hayes, C. (2010). Cerebral palsy: Classification, diagnosis and challenges of care. British
Journal of Nursing, 19(6), 368-373.
Healthy People.gov. (2010). Disparities. Retrieved from
http://www.healthypeople.gov/2020/about/DisparitiesAbout.aspx
51
Hemsley, B., Balandin, S., & Worrall, L. (2011). Nursing the patient with complex
communication needs: Time as a barrier and a facilitator to successful communication in
hospital. Journal of Advanced Nursing, 68(1). 116-126. doi: 10.1111/j.13652648.2011.05722.x
Hoffman, R. L., Dudjak, L. A. (2012). From onsite to online: Lessons learned from faculty
pioneers. Journal of Professional Nursing, 28, 255-258.
Hou, S. (2012). Health literacy online: A guide to writing and designing easy-to-use health web
sites. Health Promotion Practice, 13(5), 577-580. doi: 10.1177/1524839912446480
Hughes, R. B., Lund, E. M., Gabrielli, J., Powers, L. E., & Curry, M. (2011). Prevalence
of interpersonal violence against community-living adults with disabilities: A
literature review. Rehabilitation Psychology, 56(4), 302-319, doi:
10.1037/a0025620
Human Developmental Institute, University of Kentucky. (2010). Preservice health trainingCarrie case. Retrieved from http://womenshealth.phtmodules.net/default.aspx
Iacono, T., & Sutherland, G. (2006). Health screening and developmental disabilities. Journal of
Policy and Practice in Intellectual Disabilities, 3(3), 155-163.
Institute of Medicine. (2010). The future of nursing: Leading change, advancing health.
Washington, DC: The National Academies Press.
Jarvis, C. (2004). Physical examination & health assessment. (4th ed). St. Louis, Missouri:
Elsevier Science.
52
Kiernan, W. E. (2011). Employment of people with mental disabilities. Retrieved from
http://www1.eeoc.gov//eeoc/meetings/3-15-11/kiernan.cfm?renderforprint=1
Las Positas College. (n.d.). Online course development program- Best practices in designing
online courses. Retrieved from http://lpc1.clpccd.cc.ca.us/lpc/blackboard/best_practices/
Lifshitz, H., Merrick, J., & Morad, M. (2008). Health status and ADL functioning of older
persons with intellectual disability: Community residence versus residential care centers.
Research in Developmental Disabilities, 29, 301-315. doi:10.1016/j.ridd.2007.06.005
Marra, R. M., & Jonassen, D. H. (2001). Limitations of online courses for supporting
constructive learning. The Quarterly Review of Distance Education, 2(4). 303-317.
Maryland Developmental Disabilities Council. (n.d.). Federal definition of developmental
disabilities. Retrieved from http://www.md-council.org/resources/dd_definition.html
McCabe, M. P. (1999). Sexual knowledge, experience and feelings among people with
disability. Sexuality and Disability, 17(2), 157-170.
Morrison, L, Shinn, A. N., Russell, A., Wheeler, B., Kurtz, D., Miller, L.,… & Callanan, K.
(2003). Abuse and neglect of adults with developmental disabilities: A public health
priority for the state of California. Retrieved from
http://scdd.ca.gov/Abuse_and_Neglect.pdf
National Down Syndrome Society. (2012). Health and wellness. Retrieved from
http://www.ndss.org/Resources/Adolescence-Adulthood/Health-Wellness/
Naylor, M. D. (2000). A decade of transitional care research with vulnerable elders. Journal
of Cardiovascular Nursing, 14(3), 1-14.
53
Naylor, M. D. , Hill-Milbourne, V. R. , Knoble, S. R. , Robinson, K. M. , Bowles, K. H.
& Maislin, G. (2007). Community-based care model for high-risk adults with severe
disabilities. Home Health Care Management & Practice, 19(4), 255-266.
doi:10.1177/1084822306298784
Naylor, M. D., Hirschman, K. B., Bowles, K. H., Bixby, M. B., Konick-McMahan, J., &
Stephens, C. (2007). Care coordination for cognitively impaired older adults and their
caregivers. Home Health Care Services Quarterly, 26(4), 57-78. doi:
10.1300/J027v26n04_05
Nelson, S., & Rafferty, A. M. (2010). Notes on Nightingale- The influence and legacy of a
nursing icon. Ithaca: Cornell University Press. Retrieved from
http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi?article=1060&context= books
Northway, R. (1997). Disability and oppression: some implications for nurses and nursing.
Journal of Advanced Nursing, 26, 736-74.
Nota, L., Ferrari, L., Soresi, S., & Wehmeyer, M. (2007). Self-determination, social abilities and
the quality of life of people with intellectual disability. Journal of Intellectual Disability
Research, 51(11), 850-865. doi: 10.1111/j.1365- 2788.2006.00939.x
O’Brien, G., & Rosenbloom, L. (Eds.). (2009). Developmental disability and aging.
London, UK: Mac Keith Press.
Richardson, J. C., & Swan, K. (2003). Examining social presence in online courses in relation to
student’s perceived learning and satisfaction. Journal of Asynchronous Learning Needs,
7(1), 68-88.
54
Sanders, C. L, Kleinert, H. L., Free, T., King, P., Slusher, I., & Boyd, S. (2006). Developmental
disabilities: Improving competence in care using virtual patients. Journal of Nursing
Education, 47 (2), 66-73.
Seltzer, M.M., Shattuck, P., Abbeduto, L., & Greenberg, J.S. (2004). Trajectory of
development in adolescents and adults with autism. Mental Retardation and
Developmental Disabilities Research Reviews, 10, 234-247. doi: 10.1002/mrdd.20038
Service, K., & Hahn, J. (2003). Issues in aging: The role of the nurse in the care of older people
with intellectual and developmental disabilities. Nursing Clinics of North
America, 38(2), 291-312.
Smeltzer, S.C., Avery, C., & Haynor, P. (2012). The interactions of people with disabilities and
nursing staff during hospitalization. American Journal of Nursing, 112(4), 30-37
Song, L., Singleton, E. S., Hill, J. R., & Hwa Koh, M. (2004). Improving online learning: Student
perceptions of useful and challenging characteristics. Internet and Higher
Education, 7, 59-70. doi:10.1016/j.iheduc.2003.11.003
State Council on Developmental Disabilities (2012). About developmental disabilities.
Retrieved from http://www.scdd.ca.gov/about_developmental_disabilities/Default.htm
Strax, T. E., Luciano, L., Dunn, A. M., & Quevedo, J. P. (2010). Aging and developmental
disability. Physical Medicine & Rehabilitation Clinic of North America, 21, 419-427.
doi:10.1016/j.pmr.2009.12.009
Tommet, P. A., York, J. L., Tomlinson, P. S., & Leonard, B. J. (1993). Graduate nursing
education: Developmental disabilities and special health care needs. Issues in
Comprehensive Pediatric Nursing, 16(4), 239-258.
55
Torr, J., Strydom, A., Patti, P., & Jokinen, N. (2010). Aging in down syndrome:
Morbidity and mortality. Journal of Policy & Practice in Intellectual Disabilities,
7(1), 70-81.
Tyler, C.V., Rader, E., Campbell, J.W., Zyzanski, S.J., & Panaite, V. (2009). Geriatrician
training in the care of elders with intellectual and other developmental disabilities.
Gerontology & Geriatrics Education, 30(4), 332-340. doi:
10.1080/02701960903347717
University of Arkansas at Little Rock. (n.d.). Ten simple steps toward universal design of online
courses. Retrieved from http://ualr.edu/pace/tenstepsud/
University of California Davis Mind Institute. (2012). Autism Spectrum Disorders. Retrieved
from http://www.ucdmc.ucdavis.edu/mindinstitute/resources/autism.html
University of California Davis Mind Institute. (2012). Cerebral Palsy. Retrieved from
http://www.ucdmc.ucdavis.edu/mindinstitute/resources/cerebral_palsy.html
University of California Davis Mind Institute. (2012). Down syndrome. Retrieved from
http://www.ucdmc.ucdavis.edu/mindinstitute/resources/down_syndrome.html
U.S. Department of Health & Human Services. (2001). The surgeon general’s call to action
to promote sexual health and responsible sexual behavior- At-a-glance: The public
health problem. Retrieved from
http://www.surgeongeneral.gov/library/calls/sexualhealth/glancelist.pdf
Walsh, K. K., Hammerman, S., Josephson, F., & Krupka, P. (2000). Caring for people with
developmental disabilities: survey of nurses about their education and experience. Mental
Retardation, 38(1), 33-41.
56
Werner, S., & Grayzman, A. (2011). Factors influencing the intention of students to work
with individuals with intellectual disabilities. Research in Developmental Disabilities,
32, 2502-2510. doi:10.1016/j.ridd.2011.07.010
Wilson, J. S,. & Merrill, A. S. (2002). Teaching students to care for and about people with
disabilities. Nurse Educator, 27(2), 89-93.
World Health Organization. (2000). Ageing and intellectual disabilities - Improving
longevity and promoting healthy ageing: Summative report. Retrieved from
http://www.who.int/mental_health/media/en/20.pdf