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Health and Wellness Needs of
Individuals with Developmental Disabilities
Prepared by
Judy Singh, Ph.D.
Chief Program Evaluation Officer
American Health and Wellness Institute
Raleigh, NC
Prepared for
Florida Developmental Disabilities Council, Inc.
124 Marriott Drive, Suite 203, Tallahassee, Florida 32301-‐2981
www.FDDC.org
Sponsored by United States Department of Health and Human Services,
Administration on Intellectual and Developmental Disabilities
and the Florida Developmental Disabilities Council, Inc.
December 1, 2012
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TABLE OF CONTENTS
INTRODUCTION .............................................................................................................................. 3
INDIVIDUALS ................................................................................................................................... 5 Physical Activity .......................................................................................................................... 5 Physical Activity Summary ........................................................................................................ 10 Healthy Eating ........................................................................................................................... 11 Healthy Eating Summary ........................................................................................................... 13
CAREGIVERS .................................................................................................................................. 13 Caregivers Summary ................................................................................................................. 15
HEALTH and WELLNESS ENTITIES ................................................................................................. 16 Health and Wellness Entities Summary .................................................................................... 18
CURRENT PROJECT ....................................................................................................................... 19
STUDY 1: Caregiver Survey ........................................................................................................... 20 Method ..................................................................................................................................... 20 Results ....................................................................................................................................... 22 Discussion ................................................................................................................................. 40
STUDY 2: Individual Survey ........................................................................................................... 43 Method ..................................................................................................................................... 43 Results ....................................................................................................................................... 45 Discussion ................................................................................................................................. 66
STUDY 3: Health and Wellness Entities ........................................................................................ 69 Method ..................................................................................................................................... 69 Results ....................................................................................................................................... 70 Discussion ................................................................................................................................. 77
STUDY 4: Community Forums ....................................................................................................... 78 Method ..................................................................................................................................... 78 Results ....................................................................................................................................... 80 Discussion ................................................................................................................................. 84
RECOMMENDATIONS ................................................................................................................... 85
REFERENCES ................................................................................................................................. 90
ACKNOWLEDGMENTS .................................................................................................................. 95
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INTRODUCTION
The life span for individuals with developmental disabilities has been increasing over several
decades largely due to improvement in health care and assistive technologies (Lancioni,
Sigafoos, O’Reilly, & Singh, 2013). That individuals with developmental disabilities are living
longer does not necessarily mean they are healthier than before. Indeed, a number of
researchers investigating the health status of this population have found that their health
problems are similar to those of the general population (Sutherland, Couch, & Iacono, 2002).
Researchers, who have used body composition as a health indicator and focused on obesity,
found that individuals with developmental disabilities have a higher rate of obesity than
individuals of similar age in the general population (Hove, 2004; Kelly, Rimmer, & Ness 1986;
Rimmer, Braddock, & Fujiura, 1993; Yamaki, 2005). Furthermore, these individuals develop
secondary conditions that often accompany obesity (e.g., high blood pressure, high cholesterol,
diabetes), but at a higher rate than individuals without developmental disabilities (Draheim,
McCubbin, & Williams, 2002a).
Factors that contribute to high rates of obesity and an increase in secondary conditions
include unhealthy eating habits and lack of regular physical activity. Braunschweig et al. (2004)
assessed the nutritional status of adults with Down syndrome living in Chicago and found that
18.8% of the participants were overweight and 70.8% were obese. This was attributed to poor
eating habits. Participants consumed very few carbohydrates and did not eat the
recommended servings of fruit and vegetables. Although their intake of fat, saturated fat and
cholesterol were within the American Heart Association guidelines, their sodium intake was
high and consumption of fiber was below that recommended by the American Cancer
Association. Draheim, McCubbin, and Williams (2002b) investigated the relationship between
physical activity, dietary fat intake, and consumption of fruit and vegetables, and elevated
components of the insulin resistance syndrome in adults with mental retardation living in
community settings. They found that those who pursued a healthy lifestyle (i.e., those who
engaged in physical activity on a regular basis and ate foods low in fat) were less likely to have
hyperinsulinemia and abdominal obesity compared to those who had low levels of physical
activity and high fat intake.
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The findings from these and similar studies conducted in the 1980s and 1990s did not go
unnoticed by government agencies, particularly since they highlighted the growing disparity in
health status between individuals with developmental disabilities and the general population.
In the Healthy People 2010 initiative, the objectives to improve the health status of the general
population included persons with disabilities (US Department of Health and Human Services,
2000). In 2002, the Surgeon General held a conference on Health Disparities and Mental
Retardation to identify strategies that would help to improve the health status of individuals
with developmental disabilities (Marks & Heller, 2003). The report that was issued following
the conference was titled, “Closing the Gap: National Blueprint to Improve the Health Status of
Persons with Mental Retardation” (US Public Health Service, 2002) and outlined specific goals
and action steps that were to be taken to reduce the disparities.
The first goal towards closing the gap, which is particularly relevant to this project, was
to integrate health promotion into community environments of people with mental
retardation. The World Health Organization (WHO) defines health promotion as “the process
of enabling people to take control over and to improve their health” (WHO, 2002, p. 21).
Although this definition was in reference to the older population, it is equally applicable to
persons with developmental disabilities (Marks & Heller, 2003). Health promotion activities are
those aimed at addressing the critical areas which determine health status. When individuals
and communities are actively engaged in participating in health promotion activities, they are
increasingly empowered to control factors that affect their health status (Marks & Heller,
2003).
Various health promotion activities can be implemented to improve the health and
wellness of individuals with developmental disabilities, but these activities are targeted not just
for the individual; they also include strategies that involve caregivers and community wellness
providers, such as those who own and operate public and private sports facilities. For the
purposes of this project, this report focuses on two components of health and wellness—
physical activity and healthy eating. In order to help individuals take greater control of their
health, we first need to know what their needs are with respect to physical activity and healthy
eating.
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INDIVIDUALS
Physical Activity
Different methods have been used to obtain information on the physical activity levels of
individuals with developmental disabilities. For example, Rimmer, Braddock, and Marks (1995)
used a questionnaire, which was completed by parents, guardians or support staff, to assess
the level of physical exercise of adults with mild to severe developmental disabilities living in
institutions, group homes, or family homes. Similarly, Wells, Turner, Martin, and Roy (1997)
used a questionnaire, which was completed by the individual and support staff to assess activity
levels of adults with developmental disabilities. Emerson (2005) used key informants to
complete the Physical Activity Scale, as well as report on the number of times individuals
engaged in moderate to vigorous physical activity in the four weeks prior to completing the
scale.
Messent, Cooke, and Long (1999a) used a different approach to obtain information from
24 adults with mild and moderate developmental disabilities regarding their levels of activity.
Rather than using a structured interview format, the researchers asked the individuals to talk
about their lives focusing on specific themes, such as (a) their daily activities in the last 7 days,
(b) activities they liked and disliked, (c) why they disliked some activities, (d) their beliefs about
health, (e) their attitude toward health in the context of physical activity, and (f) their
experiences during a recent exercise program and participation in a fitness test. Similarly,
Finlayson, Turner, and Granat (2011) interviewed participants about their level of
activity/inactivity using a semi-‐structured format.
Draheim, Williams, and McCubbin (2002) used the National Health and Nutrition
Examination Survey III 1988-‐94—Physical Activity survey, with adults with mild to moderate
developmental disabilities who were living in the community. Specifically, they were interested
in (a) whether the adults engaged in physical activity, (b) whether they participated at the
frequency recommended for physical activity, and (c) how often the adults participated in
specific physical activities. They used the interview method with the direct care provider
present to provide assistance if it was needed. The individuals were asked questions related to:
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1. Transportation: Did participants use a bicycle or did they walk when getting to and from
places during the week? If they used one of these means of transportation, how long
did they spend cycling or walking, and how often did they do this?
2. Participation in sports, fitness or recreational activities: What activities did they
participate in? For each activity mentioned by the participants, they were provided a
definition for two levels of intensity and required to estimate whether they engaged in
the activity with vigorous or moderate intensity. They were also asked how often they
participated in the activities they had named.
Although it is well known that individuals with developmental disabilities experience
chronic diseases and the level at which they participate in physical activities falls below that
recommended in public health guidelines (Stanish, Temple, & Frey, 2006), there has been little
research into what determines whether or not this population will engage in such activities.
Peterson et al. (2008) tried to fill this gap in our knowledge by developing a path model that
predicts leisure physical activity participation. This model is based on the premise that if
individuals have the support of family, staff, and/or peers, they are more likely to have the
confidence to engage in physical activities and overcome barriers to do so. To test their
hypothesis, they used the Self-‐Efficacy/Social Support for Activity for Persons with Intellectual
Disability (SE/SS-‐AID) scales (Peterson, Peterson, Lowe, & Nothwehr, 2009). The four scales
include:
1. Self-‐efficacy for activity for person with intellectual disabilities (SE-‐AID) scale
2. Social support for activity for person with intellectual disabilities (SS-‐AID) family scale
3. Social support for activity for person with intellectual disabilities (SS-‐AID) staff scale, and
4. Social support for activity for person with intellectual disabilities (SS-‐AID) roommate
scale
The items on the SE-‐AID scale ask a participant if he/she would be able to engage in physical
activities during times, for example, when they are (a) busy, (b) feeling sad or depressed, (c)
have had a hard day at work, (d) lack energy, or (e) feel lazy. The family, staff and roommate
scales have similar items and ask the participant to indicate if other people in their lives (a)
remind them to engage in physical activities, (b) engage in these activities with them, (c) plan
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physical activities when they spend time together, (c) show them how to engage in the
activities, and (e) reinforce them for engaging in physical activities. The family and staff scales
also include items related to transportation and paying for the individual to engage in physical
activities. When the authors administered the scale to 152 adults with mild to moderate
developmental disabilities, they found there was a correlation between self-‐efficacy and social
support for leisure physical activities and participation in these activities.
Temple and Walkley (2007) conducted focus groups with adults with intellectual
disabilities, direct care workers, two groups of home supervisors (one rural and one urban),
managers and parents to identify factors that enabled and constrained participation in physical
activity. The key questions and follow-‐up prompts and probes were similar across all groups.
Each group was asked to comment on:
1. The extent to which the individual/client/son/daughter participated in physical activities
2. The factors that influenced the amount of physical activity they did
3. What could be done to improve the opportunities to participate in physical activities,
and
4. What was the most important factor that influenced promoting physical activity for the
individual.
Each group identified a number of barriers to regular participation in physical activities, with
the primary barriers being related to transportation, financial issues, and lack of knowledge of
what options were available. Other barriers included lack of support from teachers, coaches
and parents and support staff.
Hawkins and Look (2006) identified barriers to participation in physical activities by
individuals in group homes by having house leaders and day service workers for each individual
keep a diary of the type and duration of the physical activities the individual engaged in over a
two-‐week period, and then engaged them in a semi-‐structured interview which focused on
perceived barriers. Hawkins and Look identified 13 barriers but the five main ones included:
1. Lack of knowledge among individuals about the benefits of exercise
2. Mood of the individuals
3. Lack of awareness of the options for engaging in physical activities
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4. Perceived risk, and
5. Financial constraints.
Messent et al. (1999a) interviewed residential managers and support staff to identify
primary barriers that prevented individuals participating in physical activities. These included:
1. Lack of clear policy guidelines with respect to physical activity in residential and day
service programs
2. Financial, staffing and transport constraints
3. Limited income for individuals, and
4. Limited availability of and accessibility to leisure activities in the community.
In their follow-‐up paper, Messent, Cooke, and Long (1999b) used the same data from their
interviews with residential managers and caregivers as described in Messent et al. (1999a) and
identified secondary barriers to physical activity. These included:
1. Different interpretations among staff about the meaning of “ordinary living principles”
and how these were applied to the individuals
2. Staff disagreements with overprotective parents about their son/daughter’s
participation in physical activity
3. Issues related to integrated versus segregated leisure activities, and
4. The age appropriateness of participation in some activities.
Heller, Hsieh, and Rimmer (2002) used surveys and rating scales, supplemented with
interviews, with adults with Down syndrome as well as their parents or staff to assess (a)
caregivers’ perceived outcomes of exercise for adults with Down syndrome, (b) socio-‐emotional
barriers, and (c) access-‐related barriers to engaging in physical activities. The barriers identified
by the adults themselves were related to lack of transportation and finance, lack of knowledge
about the availability of exercise facilities, inaccessibility to fitness facilities, and not having
anyone at the fitness facility to provide training.
Frey, Buchanan, and Sandt (2005) used multiple data collection methods in their
examination of physical activity in adults with developmental disabilities. They conducted in-‐
depth interviews with the adults, used data from activity diaries that were kept by the
participants as well as from uniaxial accelerometers worn by the participants, and data
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collected during informal observations. The interviews began with some light conversation,
followed by the interviewer asking the individuals to describe their typical day from the time
they got up until the time they went to bed. The interviewer used the responses to the broad
question to generate more questions related to the individuals’ daily work and leisure activities.
Responses to the second-‐order questions were then used to generate additional questions
related specifically to physical activity. Some of the barriers were the same as those identified
by people without disabilities; for example, concerns about life in general, being too tired from
working at a job to engage in physical activities, lack of money, time and transportation,
weather, health complaints that prevented participation, and safety issues. However, there
were some additional barriers unique to this particular group of individuals:
1. Lack of guidance. The individuals expressed the need for specialized programs or
facilities, and more outside assistance so they could participate in some activities.
2. Negative support. Those involved in the care of these individuals were encouraging
sedentary behavior rather than advocating health promotion activities.
3. Leisure time choices. Individuals were unaware of the activities that they could
independently participate in.
4. Perceived benefits of physical activity. Individuals liked the social and physical benefits
of participating in physical activities, but they also liked to receive awards as they did in
the Special Olympics. They not only viewed awards as an important benefit of doing
exercise, but also as a motivator.
Mahy, Shields, Taylor, and Dodd (2010) used a semi-‐structured interview format to elicit
information from six adults with Down syndrome and 12 caregivers (four mothers and eight
staff) about the facilitators and barriers to engaging in physical activities. The interview began
with a general question about the individual’s experience with physical activity and exercise.
Based on the individual’s response, the interviewer asked open-‐ended questions to give the
participant an opportunity to talk freely about facilitators and barriers to physical activity and
exercise. For this population, the questions were kept simple and rephrased if the need arose.
Further, the individuals were not accompanied by a caregiver during the interview so that they
would not be influenced by their presence or have the caregiver respond on their behalf.
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Three facilitation and three barrier themes emerged from the data. The facilitation themes
included:
1. Support from others. The caregiver showed enthusiasm and interest in, and supported
the individual’s decision to exercise.
2. Physical activity was fun and had an interesting purpose. The physical activity provided
opportunities to socialize. There were goals and rewards for achieving them. It was fun
because the activity involved music and games.
3. Routine and familiarity. The individual was more likely to want to do physical activities if
they were a part of his/her regular routine.
The barrier themes included:
1. Lack of support. This included lack of physical and emotional support from others, lack
of community programs, and lack of acceptance and awareness.
2. Not wanting to engage in physical activity. Individuals did not like physical activity and
also showed poor attitude and poor concentration.
3. Medical and physiologic factors. These included having conditions, such as being
overweight, having unpleasant body feelings and heart conditions.
In their book titled Health Matters: The Exercise and Nutrition Health Education Curriculum for
People with Developmental Disabilities, Marks, Sisirak, and Heller (2010a) included a Knowledge
and Psychosocial Assessment for Individuals assessment tool. Part II of the assessment is
related to physical activity knowledge and supports. The four subsections include (a) attitudes
and beliefs about exercise, (b) barriers to exercise, (c) self-‐efficacy (confidence) to exercise, and
(d) social/environmental supports for exercise. The assessment is conducted using an interview
format. The items and the response choices are read to the individual.
Physical Activity Summary
When people became concerned about the health and wellness of individuals with disabilities
and it was found that, compared to the general population, these individuals enjoyed a more
sedentary life style and did not participate in physical activities to the same level, researchers
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were interested in assessing how much physical activity they engaged in. While the surveys,
questionnaires, rating scales and/or interview questions used in these studies were not
appropriate for the current project, the findings were useful because they highlighted the
health status of individuals with developmental disabilities and the need for health-‐promoting
activities for this population.
Peterson et al. (2009) developed self-‐efficacy and social support scales but, in their
current form, these were not appropriate for this project. However, the items included barriers
that individuals may encounter with respect to support from family, group home staff, and
friends. The identification of these barriers was helpful in developing some of the items in the
current project related to the assessments for the individuals as well as for their parents and
caregivers.
Temple and Walkley (2007) included the focus group discussion guide, and this provided
the key question and the follow-‐up prompts and probes. However, they were not appropriate
for inclusion in our assessments because they asked about overall engagement in physical
activity. The current project aimed at physical activity assessment of the individuals by
domains—at home, fitness facility, and parks and recreation/private facilities. By dividing the
assessment in this manner, we could ask questions that pertained specifically to each domain.
Some studies were helpful not because of appropriateness of their data collection
methods, but because the findings highlighted barriers and facilitators and perceived benefits
of physical activity. Messent et al. (1999a), Draheim et al. (2002b), Frey et al. (2005), and Mahy
et al. (2010) used the interview method to collect their data. The questions were not included
in their articles, but their findings helped in the formulation of some of the items in the current
project.
Healthy Eating
In addition to lack of physical activity, poor nutrition and lack of knowledge or awareness of
what constitutes a healthy diet contribute to the development of obesity in individuals with
developmental disabilities and an increase the risk for coronary heart disease, elevated serum
cholesterol, Type 2 diabetes, hypertension, pulmonary difficulties and decreased life
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expectancy. Golden and Hatcher (1997) assessed the nutrition knowledge of adults with mild
or moderate mental retardation. The Nutrition Knowledge Test was made up of items adapted
from nutritional achievement tests developed by the National Dairy Council (1979). The
authors selected the test items from five different content areas related to nutrition
knowledge.
1. Nutrition/physiological aspects of food: assesses whether individuals know that food
eaten by people enables them to live, grow, be healthy, and have the energy for work
and leisure activities.
2. Nutrients and food groups: assesses whether individuals know that the interaction
between the chemical substances in food and chemicals in the body produces what the
body needs.
3. Fat, sugar, and caloric content of food: assesses individuals’ knowledge of healthy food
choices with respect to fat, sugar and calorie content.
4. Weight and weight loss: assesses individuals’ knowledge of the link between food intake
and weight, and weight loss.
5. Exercise: assesses individuals’ knowledge of the duration of exercising and the link
between frequency of exercising and weight loss.
Illingworth, Moore, and McGillivray (2003) developed a nutrition and activity knowledge
scale and administered it to individuals with intellectual disabilities. The test consisted of 35
multiple-‐choice items, 21 of which assessed food knowledge and the other 14 items assessed
knowledge of the benefits of engaging in physical activities. Illustrations from “Clip Art” were
used for each of the multiple-‐choice options. The test was presented using an interview format
and a support staff was present to provide assistance, if needed.
As part of their Knowledge and Psychological Assessment for individuals, Marks et al.
(2010a) included subsections related to nutrition under Part II of the assessment. These
included (a) attitudes and beliefs about eating fruits and vegetables, (b) barriers to eating fruits
and vegetables, and (c) social/environmental supports for nutrition. All items were related to
the consumption of fruits and vegetables.
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Healthy Eating Summary
The Nutrition Knowledge Test developed by Golden and Hatcher (1997) was not appropriate for
the current project because the items assess basic knowledge of the members of the Food
Pyramid. To answer the nutrition related questions, individuals with developmental disabilities
would need to have knowledge about fat, sugar and calorie content of food. However, there
were some general concepts on this test that were useful in developing the healthy eating
assessment for the current project.
For similar reasons, the scale developed by Illingworth et al. (2003) was also
inappropriate. To respond to some of these questions, individuals would have had to have very
specific knowledge about (a) the salt, fat and sugar content of foods, and (b) foods which have
the most protein and calcium. However, there were some questions that were useful for the
current project. These included items that asked the individuals to choose the foods they
should have more or less of, and those items where the individual was required to choose the
healthiest breakfast/lunch/dinner/snack. These items assess the individuals’ knowledge of
what constitutes a healthy diet without going into the specifics of the nutrients and food
groups, and the fat, sugar and calorie content of foods. We used some of these ideas for
developing the healthy eating items in the current project.
The Marks et al. (2010a) assessments were not appropriate for the current project. The
multiple-‐choice items were developed to be read to the individual with developmental
disabilities using an interview format. It did not appear that follow-‐up questions or probes
could be used with this format.
CAREGIVERS
Caregivers are important in the lives of individuals with developmental disabilities. Their
support is critical in helping individuals participate in health promoting activities on a regular
basis. Temple and Walkley (2007) found that caregivers were seen by individuals as playing an
important role as motivators for participation in physical activities, but the data showed they
lacked motivation themselves to fulfill this role. Based on information from the parents or
caregivers, Heller, Hsieh, et al. (2002) found that if parents understood the benefits of
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exercising and if access to facilities was not a barrier, adults with Down syndrome were more
likely to exercise and to do so more frequently. Similar results were found in a study with
adults with cerebral palsy (Heller, Ying, Rimmer, & Marks, 2002). Heller, Ying, et al. asked the
caregivers three questions to which they had to give a Yes or No response. The three items
were (a) An exercise program would help the client, (b) Exercise will not improve the client’s
condition, and (c) Exercise makes the client’s condition worse. Individuals were more likely to
exercise if their caregivers perceived that exercising would have positive benefits and less likely
to exercise if their caregivers had a negative attitude towards the expected outcomes.
Individuals and caregivers have identified caregiver-‐related barriers to participation in other
studies as well (Frey et al., 2005; Lennox, 2002; Messent et al., 1999b).
Melville et al. (2009) developed a questionnaire to assess caregivers’ knowledge and
beliefs about nutrition and physical activity. The questionnaire, which is administered by an
interviewer, is divided into six sections.
1. Section 1. Participants’ Details: The caregiver was asked questions about him/her and
the person he/she supported.
2. Section 2. Lifestyle Habits: The questions were about the lifestyle habits of the person
the caregiver supported.
3. Section 3. Food and Drink: The questions were about the eating habits of the person
the caregiver supported.
4. Section 4. Physical Activity Levels: The questions were about the physical activity level
of the person the caregiver supported.
5. Section 5. Physical Exercise: The caregiver was asked about the individual’s
participation in specific activities.
6. Section 6. Your Views: Caregivers were asked questions about their views regarding the
benefits of a healthy diet. They were also asked to rate the current diet of the
individual they supported using a Likert scale ranging from extremely unhealthy to
extremely healthy. Finally, they were asked how the person they supported would
benefit from eating a healthy diet and what the barriers would be. For the last two
items, they had to choose from eight options.
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Marks, Sisirak, and Heller (2010b) developed the Health Matters Assessments, which is
completed by staff of organizations that provide services to individuals with developmental
disabilities. The aim of these assessments is to help organizations evaluate their needs and
capacity with respect to providing health promotion activities. In addition to the assessments
for evaluating the organization’s structure, culture, physical environment, and policies and
procedures, there is one called Employee Skills and Attitudes Related to Health Promotion
Activities. This assessment is divided into subsections, and the questions under each of these
aim to get staff views about the healthy eating habits and physical activities of people with
developmental disabilities. The subsections include the following:
1. What is good about exercising for people with developmental disabilities?
2. Do you think that people with developmental disabilities can exercise?
3. What barriers keep people with developmental disabilities from exercising?
4. What’s good about eating fruits and vegetables for people with developmental
disabilities?
5. Do you think that people with developmental disabilities can make healthy food
choices?
6. What keeps people with developmental disabilities from eating fruits and vegetables?
Under each question, there is a list of options and respondents have to rate each option using a
Likert scale.
Caregivers Summary
The questionnaire developed by Melville et al. (2009) was too detailed for the purposes of the
current project. In this study, the authors were assessing caregivers’ knowledge of public
health recommendations related to nutrition and physical activity. They were interested in
specific information about the diet of the individual the caregiver was supporting, for example,
the intake of (a) fruit and vegetables, (b) bread, (c) breakfast cereal, (d) fat, (e) saturated fat, (f)
oil rich fish, and (g) sodium. With respect to physical activity, caregivers’ knowledge was
assessed against the recommendation of 30 minutes of moderate activity for a minimum of five
days per week. Caregivers had to be able to respond to questions about the type of exercises
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their individuals engaged in, and duration, intensity and frequency of each activity. However,
the nutrition and physical activity barriers identified by the authors were helpful in developing
the assessment for caregivers in the current project. The assessments developed by Marks et al.
(2010b) were appropriate, but they could not be used because they are copyrighted.
HEALTH AND WELLNESS ENTITIES
Individuals with developmental disabilities can benefit from the same physical activities as the
general population with the aid of assistive devices or equipment, if needed. They can exercise
at home or they can use the wide range of exercise facilities, both public and private, that are
available in the community. The Americans with Disabilities Act (ADA) provides detailed
guidelines for entities as to what they are required to do to make both indoor and outdoor
facilities inclusive. Yet individuals with disabilities, especially those who use wheelchairs, still
face barriers to fitness and recreational facilities because owners do not always comply with all
of the ADA standards.
Rimmer, Riley, Wang, Rauworth, and Jurkowski (2004) conducted a study with
individuals with disabilities and professionals, such as architects, city managers, and fitness and
recreation professionals who dealt with accessibility issues and physical activity programs for
individuals with disabilities. Focus groups were held in 10 regions across the country. People
with disabilities and professionals had the opportunity to identify what they perceived as
barriers to participation in physical activities at fitness centers, swimming pools, parks and
trails. They were also asked to identify possible facilitators to overcome these barriers.
The identified barriers were categorized as follows:
1. Built and natural environment: included barriers in the natural environment around the
fitness facility and in the building itself.
2. Cost/economic: included barriers related to (a) the cost of making the built and natural
environments accessible, and (b) the cost to consumers to participate in physical
activities in public venues.
3. Equipment: included barriers related to the accessibility of the equipment.
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4. Guidelines, codes, regulations and laws: included barriers related to the interpretation
of accessibility laws and regulations, and to ADA guidelines and codes.
5. Information: included barriers to accessing information about the facility and within the
facility once an individual was inside.
6. Emotional/psychological: included psychological and emotional barriers experienced by
individuals with disabilities.
7. Knowledge, education and training: included barriers related to educating and training
professionals about accessibility issues and how to work with individuals with
disabilities.
8. Perceptions and attitudes: included barriers related to the perceptions and attitude of
non-‐disabled consumers and professionals toward accessibility and toward individuals
with disabilities.
9. Policies and procedures: included barriers that were a direct result of rules and
regulations implemented by the facility or community.
10. Resource availability: included barriers that were created because resources needed to
allow individuals with disabilities to participate in physical activities, such as transport
and adaptive equipment, were not available.
Since the passage of the Americans with Disabilities Act in 1990, the recreation
profession has made huge gains in making facilities inclusive (Devine, 2012). However, it is not
known whether parks and recreation agencies are complying with the revisions to the
standards, what barriers to inclusion they are currently experiencing, and what they are doing
to address them. To obtain information on these issues, Devine sent a survey (Inclusive
Recreation for Individuals with Disabilities Questionnaire) to a random sample of parks and
recreation agencies across the country. The survey was divided into sections as follows:
1. Organizational obstacles
2. Addressed organizational obstacles
3. Addressed financial obstacles
4. Personnel related obstacles
5. Addressed personnel obstacles, and
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6. Community/population related obstacles
In each section, administrators responded to the questions by completing the Likert scale
provided. At the end of each section, there was an open-‐ended question where respondents
could provide additional information.
Health and Wellness Entities Summary
The Rimmer et al. (2004) study did not provide the focus group questions, but the findings
provided information about the barriers that owners of fitness facilities need to address in
order to make their services inclusive. The barriers and facilitators identified by the
participants, and the way they were categorized by the authors, were helpful in formulating the
items for the assessments developed in the current project. The Devine survey was not
appropriate for the current project, but was useful because it provided information on the
barriers that parks and recreation agencies need to address to comply with the inclusive
policies mandated by ADA. Although the items on the survey used by Devine reflected the ADA
mandates, and current issues related to inclusion, not all of them were relevant for the current
project.
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CURRENT PROJECT
In this project, we undertook four related studies to investigate the health and wellness needs
of individuals with developmental disabilities. Study 1 focused on caregivers. We wanted to
know about the physical activities and eating habits of individuals with developmental
disabilities they cared for, how knowledgeable they are about the importance of exercise and
healthy eating, and to what extent they incorporate these into their daily lives, both at home
and in the community. We also wanted to know if there are barriers to the individuals they
cared for being able to use the health and wellness services that are available in their
community and what can be done to remove some of these barriers. Study 2 focused on
individuals with developmental disabilities. We were interested in the same issues that we
posed to the caregivers, but in Study 2 we wanted to know from the individuals themselves
regarding their physical activities, eating habits, their knowledge of health and wellness
activities, and their perceived barriers to engaging in health and wellness activities, both at
their place of residence and in their local community. Study 3 focused on health and wellness
entities that offer different types of physical activities (e.g., fitness centers/gyms, dance studios,
yoga studios, martial arts/karate studios). We wanted to know if participants from these
entities knew whether individuals with developmental disabilities used their facilities and, if so,
what types of disabilities or challenging behaviors they have, and if they need any special
accommodations. Finally, in Study 4, we undertook three community forums to gather similar
information from parents, caregivers, support coordinators, individuals with developmental
disabilities, and representatives from health and wellness entities.
20
STUDY 1: Caregiver Survey
Method
Survey Methodology
An internet-‐based survey was developed for caregivers and advertised via list serves to the
developmental disabilities community in Florida, with an emphasis on the Broward, Duval,
Okeechobee and Bradford counties. The survey and all other information were provided to
participants on the survey and no identifying information on the participants was available to
the researchers. Electronic consent was elicited from participants via an informed consent
document approved by the Florida Developmental Disabilities Council (FDDC). Submission of a
completed electronic consent form indicated a participant’s consent to take part in the study,
and all submitted data were stored in a secure server. Online data collection is considered a
valid and reliable technique when compared with mailed approaches (Gosling, Vazire,
Srivastava, & John, 2004) and is now a frequently used tool in behavioral research (Gosling &
Johnson, 2010; Granello & Wheaton, 2004). Hard copies of the survey were also available for
face-‐to-‐face or telephone administration to caregivers. All survey data (i.e., web-‐based
responses, face-‐to-‐face, telephone interviews) were entered and maintained via
SurveyMonkey.com, Portland, Oregon, USA.
The American Health and Wellness Institute and FDDC sent recruitment emails for
participation in the study to community providers and families with a member with
developmental disabilities. This e-‐mail contained an explanation of the survey and its
objectives, consent form, and link to the survey. A similar e-‐mail was sent again 4 weeks, 2
months and 4 months later to the same participants to remind them about the survey. The
survey link remained active and the survey was available for a total of 8 months. There was no
financial incentive to participate in the survey, but the participants and community provider
agencies could request a copy of the final report.
Survey Development
We reviewed current survey methodology as well as current literature on physical activity,
health and nutrition in individuals with developmental disabilities. The literature review and the
21
authors’ collective experience in the field of developmental disabilities revealed that no existing
tools fully met the needs of the current survey. Thus, we developed a new survey for caregivers
that focused on the health and wellness needs of individuals with developmental disabilities. In
addition, we wanted to know what the caregivers perceived were barriers to the person they
cared for in being able to use the health and wellness services that were available in their
community, and what could be done to remove some of these barriers. They were clearly
informed that the survey was not designed to judge the services provided by the caregivers or
the agency they worked for. The survey was pilot tested, reviewed by FDDC, revised and
finalized. The final version was translated into Spanish using back-‐translation method, reviewed
by FDDC, revised and finalized. Both English and Spanish versions were available on the Internet
via Survey Monkey.com and in hard copy.
Survey Respondents
Of the 122 caregivers who participated, 47 (38.52%) responded online, 73 (59.84%) responded
in face-‐to-‐face interviews, and 2 (1.64%) by telephone interviews. Of the 122 caregivers, 96
(79%) provided sociodemographic information. Of these 96 participants, 83 (86.5%) were
females. The participants were from the following age ranges: 21-‐30 years—53 (36.5%); 31-‐40
years—21 (21.9%); 41-‐50 years—13 (13.5%); 51-‐60 years—14 (14.6%); and over 60 years—13
(13.5%). In terms of where they provided services, 14 (14.6%) were from supported living, 40
(41.7%) from group homes (≥6 persons), 5 (5.2%) from small group homes (3 persons), 32
(33.3%) from family home with supports, and 5 (5.2%) from in-‐home support with a non-‐
relative. In terms of years of service with individuals with developmental disabilities, 35 (36.5%)
had worked for 0 to 5 years, 31 (32.3%) had worked for 6 to 10 years, 8 (8.3%) had worked for
11 to 15 years, 5 (5.2%) had worked for 16 to 20 years, and 17 (17.7) had worked for over 20
years. In terms of the counties in which the caregivers provided services, 62 (50.8%) were from
Broward, 31 (25.4%) from Duval, 12 (9.8%) from Okeechobee, 9 (7.4%) from Bradford, and 8
(6.6%) unspecified. The percent caregiver responses from these counties are fairly
proportionate to the total general population, which is 65% (Broward), 32% (Duval), 2%
(Okeechobee), and 1% (Bradford).
22
Results
Physical Activity
Physical activity was defined as any body movement that works one’s muscles and requires
more energy than resting (e.g., walking, running, dancing, swimming, yoga, gardening, and
doing household chores). Physical activity generally refers to any movement that enhances
health. Overall, 122 caregivers completed the survey, but they did not complete all items. The
data are presented in terms of the number of caregivers who completed each item.
Physical Activities Around the House
Of 120 caregivers, 109 (90.8%) indicated the individuals in their care engaged in physical
activities around the house, and 119 (99.2%) indicated they thought it is important for the
individuals to engage in physical activities. The caregivers gave multiple reasons for the
importance of the individuals engaging in physical activity: 103 (84.4%)—general health reasons
(e.g., more energy, better sleep, improve immune system, help appetite); 41 (33.6%)—
emotional health (e.g., self-‐confidence, self esteem, improve mood, stimulate the mind); 36
(29.5%)—general fitness (e.g., maintain mobility, maintain healthy body, builds strength,
improves muscle tone); 36 (29.5%)—social (e.g., feel part of the community, social interaction,
become more independent); 30 (24.6%)—weight (e.g., fight obesity, manage weight); 14
(11.5%)—cardiovascular fitness (e.g., controls cholesterol, lowers blood pressure); and 6
(4.9%)—challenging behavior (e.g., reduces anger management problems, decreases self-‐injury
and aggression).
Of 112 caregivers, 97 (86.6%) indicated that individuals in their care engaged in specific
physical activities around the house. The table below specifies the household chores the
individuals in their care currently do and what caregivers would like them to do more of (see
Table 1). The same caregiver responses are presented in Table 2, but in terms of geographic
location—the two urban (Broward, Duval) and two rural (Okeechobee, Bradford) counties.
23
Table 1. The number and percentage of all caregivers who specified what the individuals in their care do now and could do. N = total number who responded to this question; n = number who endorsed each item. Household Chores Individual Does Now
(N=95) Individual Could Do
(N=109) n % n %
Making bed 73 76.8 20 18.3 Taking out the garbage 72 75.8 8 7.3 Doing laundry 67 70.5 21 19.3 Washing dishes 56 58.9 10 9.2 Folding clothes 53 55.8 22 20.2 Cleaning the counters and sink 50 52.6 14 12.8 Sweeping and mopping the floor 43 45.3 22 20.2 Grocery shopping 39 41.1 17 15.6 Cleaning the bathroom 36 37.9 12 11.0 Dusting 36 37.9 26 23.9 Wiping down cabinets 27 28.4 12 11.0 Vacuuming 26 27.4 10 9.2 Washing a car 15 15.8 11 10.1 Watering the flower beds 14 14.7 19 17.4 Washing windows 9 9.5 10 9.2 Gardening 8 8.4 16 14.7 Ironing clothes 6 6.3 16 14.7 Mowing the lawn 3 3.2 13 11.9 Others 19 20.0 31 28.4 None 0 0 13 11.9 Table 2. The number and percentage of caregivers who specified what the individuals in their care do now and could do, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Household Chores Individual Does Now Broward
(N=54) Duval (N=26)
Okeechobee (N=4)
Bradford (N=5)
n % n % n % n % Making bed 40 74.1 21 80.8 4 100 3 60 Taking out the garbage 42 77.8 17 65.4 4 100 5 100 Doing laundry 40 74.1 18 69.2 3 75.0 3 60 Washing dishes 34 63.0 16 61.5 1 25.0 3 60 Folding clothes 28 51.9 13 50.0 4 100 4 80 Cleaning the counters and sink 26 48.1 17 65.4 2 50.0 3 60 Sweeping and mopping the floor 26 48.1 13 50.0 3 75.0 0 0.0
24
Grocery shopping 21 38.9 12 46.2 2 50.0 2 40.0 Cleaning the bathroom 18 33.3 13 50.0 1 25.0 1 20.0 Dusting 20 37.0 11 42.3 2 50.0 2 40.0 Wiping down cabinets 14 25.9 9 34.6 1 25.0 1 20.0 Vacuuming 4 7.4 15 57.7 2 50.0 2 40.0 Washing a car 8 14.8 4 15.4 1 25.0 1 20.0 Watering the flower beds 7 13.0 4 15.4 2 50.0 0 0.0 Washing windows 5 9.3 3 11.5 0 0.0 0 0.0 Gardening 5 9.3 2 7.7 1 25.0 0 0.0 Ironing clothes 1 1.9 4 15.4 0 0.0 0 0.0 Mowing the lawn 0 0.0 2 7.7 0 0.0 1 20.0 Others 10 18.5 3 11.5 1 25.0 2 40.0 Household Chores Individual Could Do Broward
(N=60) Duval (N = 30)
Okeechobee (N=6)
Bradford (N=6)
n % n % n % n % Making bed 16 26.7 2 6.7 0 0.0 2 33.3 Taking out the garbage 5 8.3 3 10.0 0 0.0 0 0.0 Doing laundry 12 20.0 7 23.3 1 16.7 1 16.7 Washing dishes 6 10.0 2 6.7 2 33.3 0 0.0 Folding clothes 14 23.3 8 26.7 0 0.0 0 0.0 Cleaning the counters and sink 8 13.3 3 10.0 2 33.3 1 16.7 Sweeping and mopping the floor 12 20.0 6 20.0 1 16.7 3 50.0 Grocery shopping 9 15.0 8 26.7 0 0.0 0 0.0 Cleaning the bathroom 7 11.7 1 3.3 2 33.3 2 33.3 Dusting 13 21.7 9 30.0 1 16.7 2 33.3 Wiping down cabinets 8 13.3 4 13.3 0 0.0 0 0.0 Vacuuming 6 10.0 3 10.0 0 0.0 1 16.7 Washing a car 4 6.7 6 20.0 0 0.0 1 16.7 Watering the flower beds 14 23.3 3 10.0 1 16.7 1 16.7 Washing windows 1 1.7 8 26.7 0 0.0 0 0.0 Gardening 9 15.0 3 10.0 0 0.0 4 66.7 Ironing clothes 7 11.7 8 26.7 0 0.0 1 16.7 Mowing the lawn 5 8.3 7 23.3 0 0.0 1 16.7 Others 21 35.0 3 10.0 2 33.3 2 33.3 We asked caregivers their perceptions of why the individuals in their care did not want
to do some of the chores at home. The table below lists their perceived reasons (see Table 3).
The same caregiver responses are presented in Table 4, but in terms of geographic location—
the two urban (Broward, Duval) and two rural (Okeechobee, Bradford) counties.
25
Table 3. The number and percentage of caregivers who specified reasons why the individual in their care did not do household chores. N = total number who responded to this question; n = number who endorsed each item. Reasons Caregivers Think Individuals Do Not Want to Do the Chores Caregivers
(N=96) n %
The individual doesn’t like to do them 43 44.8 The individual is not interested in doing them 49 52.0 The individual refuses to do household chores when asked to do them 21 21.9 The individual thinks household chores are too difficult for him/her 13 13.5 The individual would much rather watch television 20 20.8 The individual doesn’t like to get dirty 7 7.3 The individual is too busy doing other things 4 4.2 The individual wants to be rewarded for doing chores and I refuse to reward him/her
5 5.2
The individual has difficulty following directions 26 27.1 The individual does not have the physical capacity to complete chores 21 21.9 Other reasons the individual you care for does not do household chores
23 24.0
Table 4. The number and percentage of caregivers who specified reasons why the individual in their care did not do household chores, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Reasons Caregivers Think Individuals Do Not Want to Do the Chores
Caregivers
Broward (N=59)
Duval (N=23)
Okeechobee (N=4)
Bradford (N=6)
n % n % n % n % The individual doesn’t like to do them
32 54.2 8 34.8 1 25.0 2 33.3
The individual is not interested in doing them
35 59.3 10 43.5 1 25.0 3 50.0
The individual refuses to do household chores when asked to do them
15 25.4 3 13.0 1 25.0 2 33.3
The individual thinks household chores are too difficult for him/her
8 13.6 1 4.3 2 50.0 2 33.3
The individual would much rather watch television
10 16.9 6 26.1 1 25.0 2 33.3
26
The individual doesn’t like to get dirty
2 3.4 4 17.4 1 25.0 0 0.0
The individual is too busy doing other things
2 3.4 1 4.3 0 0.0 0 0.0
The individual wants to be rewarded for doing chores and I refuse to reward him/her
3 5.1 2 8.7 0 0.0 0 0.0
The individual has difficulty following directions
12 20.3 8 34.8 0 0.0 4 66.7
The individual does not have the physical capacity to complete chores
12 20.3 4 17.4 1 25.0 2 33.3
Other reasons the individual you care for does not do household chores
15 25.4 2 8.7 2 50.0 3 50.0
We also asked caregivers if they had specific reasons why they would not like the
individuals in their care to do household chores. The table below lists their reasons (see Table
5). The same caregiver responses are presented in Table 6, but in terms of geographic
location—the two urban (Broward, Duval) and two rural (Okeechobee, Bradford) counties.
Table 5. The number and percentage of caregivers who specified reasons why they did not want individuals in their care to do household chores. N = total number who responded to this question; n = number who endorsed each item. Caregivers’ Reasons for Not Wanting the Individuals to Do Household Chores
Caregivers (N=96)
n % The individual takes too long to complete household chores and it is easier for me to do them myself
22 22.9
The individual does not complete the chores properly 35 36.5 It is not safe for the individual to do chores 20 20.8 The individual would have to be taught how to do household chores and I don’t have the time to teach him/her
20 20.8
The individual would have to be supervised while completing chores and I don’t have time to supervise
26 27.1
Other reasons you may have for not wanting or not being able to facilitate the individual doing household chores
26 27.1
27
Table 6. The number and percentage of caregivers who specified reasons why they did not want individuals in their care to do household chores, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Caregivers’ Reasons for Not Wanting the Individuals to Do Household Chores
Caregivers
Broward (N=59)
Duval (N=23)
Okeechobee (N=4)
Bradford (N=6)
n % n % n % n % The individual takes too long to complete household chores and it is easier for me to do them myself
10 16.9 8 34.8 2 50.0 2 33.3
The individual does not complete the chores properly
20 33.9 10 43.5 2 50.0 2 33.3
It is not safe for the individual to do chores
16 27.1 1 4.3 1 25.0 0 0
The individual would have to be taught how to do household chores and I don’t have the time to teach him/her
15 25.4 4 17.4 1 25.0 0 0
The individual would have to be supervised while completing chores and I don’t have time to supervise
16 27.1 7 30.4 1 25.0 2 2
Other reasons you may have for not wanting or not being able to facilitate the individual doing household chores
12 20.3 7 30.4 1 25.0 4 4
Physical Exercises at Home or in the Community
Of the 109 caregivers who responded to this question, 100 (91.7%) indicated that the individual
they cared for engaged in physical exercises at home or in the community. The table below
specifies physical exercises the individuals in their care currently engage in and what caregivers
would like them to do more of (see Table 7). The same caregiver responses are presented in
Table 8, but in terms of geographic location—the two urban (Broward, Duval) and two rural
(Okeechobee, Bradford) counties.
28
Table 7. The number and percentage of caregivers who specified what physical exercises the individuals in their care do now and could do. N = total number who responded to this question; n = number who endorsed each item. Physical Exercises Individual Does Now
(N=100) Individual Could Do
(N=109) n % n %
Aerobics 8 8.0 25 22.9 Dance 49 49.0 19 17.4 Yoga 5 5.0 15 13.8 Karate 0 0.0 8 7.3 Lifting weights 9 9.0 13 11.9 Walking/Running on a treadmill 55 55.0 18 16.5 Using an elliptical machine 5 5.0 15 13.8 Using an exercise bike 23 23.0 32 29.4 Using resistance bands 2 2.0 7 6.4 Pilates 0 0.0 5 4.6 Playing Wii games 37 37.0 13 11.9 Walking the dog 8 8.0 5 4.6 Walking/running on trails 38 38.0 9 8.3 Bike riding 14 14.0 25 22.9 Fishing 3 3.0 14 12.8 Team sports 19 19.0 22 20.2 Bowling 59 59.0 14 12.8 Other 36 36.0 12 11 None 0 0.0 10 9.2
Table 8. The number and percentage of caregivers who specified what physical exercises the individuals in their care do now and could do, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item.
Physical Exercises Individual Does Now Broward
(N=56) Duval (N=26)
Okeechobee (N=5)
Bradford (N=6)
n % n % n % n % Aerobics 4 7.1 4 15.4 0 0.0 0 0.0 Dance 31 55.4 13 50.0 1 20.0 2 33.3 Yoga 0 0.0 3 11.5 1 20.0 1 16.7 Karate 0 0.0 0 0.0 0 0.0 0 0.0 Lifting weights 2 3.6 5 19.2 0 0.0 1 16.7 Walking/Running on a treadmill 28 50.0 19 73.1 3 60.0 3 50.0 Using an elliptical machine 2 3.6 1 3.8 1 20.0 1 16.7
29
Using an exercise bike 16 28.6 5 19.2 0 0.0 1 16.7 Using resistance bands 1 1.8 1 3.8 0 0.0 0 0.0 Pilates 0 0.0 0 0.0 0 0.0 0 0.0 Playing Wii games 20 35.7 9 34.6 2 40.0 2 33.3 Walking the dog 4 7.1 3 11.5 1 20.0 0 0.0 Walking/running on trails 29 51.8 4 15.4 2 40.0 1 16.7 Bike riding 5 8.9 3 11.5 2 40.0 0 0.0 Fishing 2 3.6 0 0.0 1 20.0 0 0.0 Team sports 16 28.6 1 3.8 1 20.0 0 0.0 Bowling 37 66.1 12 46.2 2 40.0 3 50.0 Other 20 35.7 5 19.2 2 40.0 3 50.0 Physical Exercises Individual Could Do Broward
(N=60) Duval (N=30)
Okeechobee (N=6)
Bradford (N=6)
n % n % n % n % Aerobics 17 28.3 4 13.3 1 16.7 3 50.0 Dance 9 15.0 7 23.3 1 16.7 1 16.7 Yoga 11 18.3 4 13.3 0 0.0 0 0.0 Karate 4 6.7 4 13.3 0 0.0 0 0.0 Lifting weights 7 11.7 5 16.7 0 0.0 1 16.7 Walking/Running on a treadmill 10 16.7 5 16.7 1 16.7 1 16.7 Using an elliptical machine 10 16.7 4 13.3 1 16.7 0 0.0 Using an exercise bike 18 30.0 7 23.3 2 33.3 3 50.0 Using resistance bands 3 5.0 4 13.3 0 0.0 0 0.0 Pilates 2 3.3 3 10.0 0 0.0 0 0.0 Playing Wii games 10 16.7 2 6.7 0 0.0 1 16.7 Walking the dog 2 3.3 1 3.3 1 16.7 1 16.7 Walking/running on trails 5 8.3 2 6.7 1 16.7 1 16.7 Bike riding 15 25.0 5 16.7 2 33.3 2 33.3 Fishing 9 15.0 5 16.7 0 0.0 0 0.0 Team sports 12 20.0 4 13.3 2 33.3 2 33.3 Bowling 9 15.0 4 13.3 1 16.7 0 0.0 None 1 1.7 3 10.0 2 33.3 2 33.3 Other 5 8.3 5 16.7 0 0.0 1 16.7
We asked caregivers their perceptions of why the individuals in their care did not want
to engage in the physical exercises that the caregivers would like them to. The table below lists
their perceived reasons (see Table 9). The same caregiver responses are presented in Table 10,
but in terms of geographic location—the two urban (Broward, Duval) and two rural
(Okeechobee, Bradford) counties.
30
Table 9. The number and percentage of caregivers who specified reasons why the individual in their care did not engage in physical exercises their caregivers think they should. N = total number who responded to this question; n = number who endorsed each item. Reasons for Not Engaging in Physical Exercises their Caregivers Think They Should
Caregivers (N=99)
n % The individual is not interested 60 60.6 The individual would rather watch TV 35 35.4 The individual is always too tired 15 15.2 The individual is too scared to go out alone into the neighborhood 8 8.1 The individual says there is not enough space to exercise at home 6 6.1 The individual can’t afford the equipment to exercise at home 19 19.2 The individual doesn’t make time to exercise at home 11 11.1 The individual thinks he/she is not physically able to engage in these kinds of activities
18 18.2
The individual is not aware of the facilities that are available in the community
7 7.1
The individual doesn’t have the money for the fees you have to pay sometimes
17 17.2
There is no public transportation for the individual to get to these places
8 8.1
None of the individual’s friends do these activities so he/she is not motivated
9 9.1
The individual wouldn’t know how to use the equipment in fitness facilities
14 14.1
The staff at these facilities don’t teach the individual how to use the equipment
10 10.1
The equipment is not adapted for people with developmental disabilities
12 12.1
Other people at these facilities stare at the individual and he/she gets upset
8 8.1
The individual says the staff at these facilities are not very friendly 3 3.0 Other reasons the individual you care for does not do the physical exercises he/she could do at home or in the community
19 19.2
31
Table 10. The number and percentage of caregivers who specified reasons why the individual in their care did not engage in physical exercises their caregivers think they should, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Reasons for Not Engaging in Physical Exercises their Caregivers Think They Should
Caregivers
Broward (N=59)
Duval (N=27)
Okeechobee (N=4)
Bradford (N=4)
n % n % n % n % The individual is not interested 43 72.9 13 48.1 2 50.0 1 25.0 The individual would rather watch TV
20 33.9 10 37.0 1 25.0 2 50.0
The individual is always too tired 6 10.2 7 25.9 1 25.0 1 25.0 The individual is too scared to go out alone into the neighborhood
5 8.5 1 3.7 0 0.0 2 50.0
The individual says there is not enough space to exercise at home
3 5.1 2 7.4 0 0.0 1 25.0
The individual can’t afford the equipment to exercise at home
11 18.6 7 25.9 0 0.0 1 25.0
The individual doesn’t make time to exercise at home
5 8.5 4 11.1 0 0.0 1 25.0
The individual thinks he/she is not physically able to engage in these kinds of activities
9 15.3 7 25.9 1 25.0 1 25.0
The individual is not aware of the facilities that are available in the community
4 6.8 3 11.1 0 0.0 0 0.0
The individual doesn’t have the money for the fees you have to pay sometimes
11 18.6 2 7.4 1 25.0 1 25.0
There is no public transportation for the individual to get to these places
5 8.5 1 3.7 0 0.0 1 25.0
None of the individual’s friends do these activities so he/she is not motivated
6 10.2 2 7.4 0 0.0 1 25.0
The individual wouldn’t know how to use the equipment in fitness facilities
8 13.6 3 11.1 0 0.0 2 50.0
32
The staff at these facilities don’t teach the individual how to use the equipment
7 11.9 1 3.7 0 0.0 2 50.0
The equipment is not adapted for people with developmental disabilities
7 11.9 3 11.1 0 0.0 2 50.0
Other people at these facilities stare at the individual and he/she gets upset
7 11.9 1 3.7 0 0.0 0 0.0
The individual says the staff at these facilities are not very friendly
3 5.1 0 0.0 0 0.0 0 0.0
Other reasons the individual you care for does not do the physical exercises he/she could do at home or in the community
8 13.6 5 18.5 1 25.0 2 50.0
We also asked caregivers if they had specific reasons why they would not like the
individuals in their care to engage in physical exercises at home or in the community. The table
below lists their reasons (see Table 11). The same caregiver responses are presented in Table
12, but in terms of geographic location—the two urban (Broward, Duval) and two rural
(Okeechobee, Bradford) counties.
Table 11. The number and percentage of caregivers who specified reasons why they did not want individual in their care to engage in physical activities at home or in the community. N = total number who responded to this question; n = number who endorsed each item. Caregivers’ Reasons for Not Wanting the Individuals to Engage in Specific Physical Activities
Caregivers (N=96)
n % I don’t have the money to buy home equipment 25 26.0 There is not enough room at home for exercise equipment 15 15.6 I don’t have time to go walking or running in the neighborhood 13 13.5 It is not safe for the individual to go running/walking/riding a bike in the neighborhood
21 21.9
Exercising at home would bother other people in the house 2 2.1 I don’t have the money to pay the fees at community facilities 14 14.6 I do not have the time to take him/her to these community facilities 32 33.3 I don’t do any of these exercises so I don’t think it is important for the individual I care for to do them
2 2.1
33
I don’t think it is safe for the individual to go to these community facilities
28 29.2
I don’t think it is important for the individual to do these activities 6 6.3 I don’t know anything about the activities that are available in the community
7 7.3
The facilities are too far away from where I live 5 5.2 Other reasons you may have for not wanting or not being able to facilitate the individual doing physical exercises at home or in the community
25 26.0
Table 12. The number and percentage of caregivers who specified reasons why they did not want individual in their care to engage in physical activities at home or in the community, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Caregivers’ Reasons for Not Wanting the Individuals to Engage in Specific Physical Activities
Caregivers
Broward (N=58)
Duval (N=27)
Okeechobee (N=2)
Bradford (N=4)
n % n % n % n % I don’t have the money to buy home equipment
9 15.5 13 48.1 1 50.0 1 25.0
There is not enough room at home for exercise equipment
4 6.9 8 29.6 1 50.0 2 50.0
I don’t have time to go walking or running in the neighborhood
5 8.6 6 22.2 1 50.0 1 25.0
It is not safe for the individual to go running/walking/riding a bike in the neighborhood
13 22.4 5 18.5 1 50.0 2 50.0
Exercising at home would bother other people in the house
0 0.0 2 7.4 0 0.0 0 0.0
I don’t have the money to pay the fees at community facilities
4 6.9 6 22.2 1 50.0 3 75.0
I do not have the time to take him/her to these community facilities
20 34.5 8 29.6 1 50.0 2 50.0
I don’t do any of these exercises so I don’t think it is important for the individual I care for to do them
0 0.0 1 3.7 0 0.0 1 25.0
34
I don’t think it is safe for the individual to go to these community facilities
23 39.7 4 14.8 0 0.0 1 25.0
I don’t think it is important for the individual to do these activities
2 3.4 3 11.1 0 0.0 1 25.0
I don’t know anything about the activities that are available in the community
5 8.6 1 3.7 0 0.0 1 25.0
The facilities are too far away from where I live
2 3.4 3 11.1 0 0.0 0 0.0
Other reasons you may have for not wanting or not being able to facilitate the individual doing physical exercises at home or in the community
14 24.1 6 22.2 0 0.0 2 50.0
Healthy Eating
Of the 105 respondents, 79 (75.2%) caregivers stated that individuals they cared for ate a
healthy diet that included lots of fresh fruit and vegetables, fish and lean meats, and dairy
products (e.g., milk, yogurt, cottage cheese, and eggs). That is, a quarter of those who
responded (i.e., 24.8%) indicated the individuals in their care did not have a healthy diet.
However, virtually all caregivers (i.e., 98.1%) indicated it is important for the individuals they
care for to eat a healthy diet on a regular basis. The caregivers gave multiple reasons for the
importance of the individuals having a healthy diet: 97 (94.2%)—promotes good health (e.g.,
decreases risk for diseases, maintains and improves health, preventative health); 32 (31.1%)—
weight control—reduces obesity, maintain proper weight); 21 (20.4%)—improves body function
(e.g., helps with constipation, proper digestion, gastrointestinal health, sleep better); 16
(15.5%)— cardiovascular (e.g., controls cholesterol, reduces risk for high blood pressure,
reduces risk for heart diseases); 10 (9.7%)—medical reasons (reduce risk of diabetes, stress,
facilitate healthy immune system), and 6 (5.8%)—mental health (e.g., better cognitive
functioning, increases happiness, improve mood). Only three caregivers indicated that they did
not think it is important for the individuals in their care to have a healthy diet on a regular basis.
35
Their reasons for holding this view included, “I don’t eat healthy, why should they need to?”
and “It is too expensive.”
Of the 122 caregivers, 105 nominated foods that the individuals in their care should eat
more of and other foods they should eat less of. Table 13 presents their views on what the
individuals should eat more and less of. The same caregiver responses are presented in Table
14, but in terms of geographic location—the two urban (Broward, Duval) and two rural
(Okeechobee, Bradford) counties.
Table 13. Caregivers’ perceptions of what the individuals should eat more and less of. N = total number who responded to this question; n = number who endorsed each item.
Eat More of these Foods Caregivers (N=105)
Eat Less of these Foods Caregivers (N=105)
n % n % Variety of foods 87 82.9 Cakes 54 51.4 Vegetables of different color 87 82.9 Donuts 52 49.5 Whole grains 72 68.6 Potato or other chips 71 67.6 Low fat milk 41 39.0 Processed meats 52 49.5 Yogurt 43 41.0 Snack foods 64 61.0 Cheese 31 29.5 Fast foods 66 62.9 Cottage cheese 39 37.1 TV dinners 39 37.1 Unsalted nuts and seeds 49 46.7 White rice 40 38.1 Variety of seafood 54 51.4 Pasta 36 34.3 Lean meats 58 55.2 Salted nuts 39 37.1 Soda 69 65.7 Cookies 62 59.0 Table 14. Caregivers’ perceptions of what the individuals should eat more and less of, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Eat More of these Foods Caregivers Broward
(N=58) Duval (N=30)
Okeechobee (N=4)
Bradford (N=6)
n % n % n % n % Variety of foods 53 91.4 25 83.3 1 25.0 3 50.0 Vegetables of different color 51 87.9 25 83.3 1 25.0 4 66.7 Whole grains 36 62.1 27 90.0 0 0.0 4 66.7 Low fat milk 25 43.1 14 46.7 0 0.0 0 0.0
36
Yogurt 28 48.3 12 40.0 1 25.0 0 0.0 Cheese 15 25.9 14 46.7 0 0.0 0 0.0 Cottage cheese 28 48.3 9 30.0 0 0.0 0 0.0 Unsalted nuts and seeds 29 50.0 17 56.7 1 25.0 1 16.7 Variety of seafood 30 51.7 17 56.7 1 25.0 2 33.3 Lean meats 37 63.8 16 53.3 1 25.0 1 16.7 Eat Less of these Foods Caregivers Broward
(N=58) Duval (N=30)
Okeechobee (N=4)
Bradford (N=6)
n % n % n % n % Cakes 34 58.6 17 56.7 0 0.0 1 16.7 Donuts 32 55.2 18 60.0 0 0.0 1 16.7 Potato or other chips 39 67.2 24 80.0 2 50.0 2 33.3 Processed meats 29 50.0 17 56.7 1 25.0 2 33.3 Snack foods 35 60.3 20 66.7 1 25.0 3 50.0 Fast foods 40 69.0 21 70.0 1 25.0 2 33.3 TV dinners 21 36.2 15 50.0 0 0.0 2 33.3 White rice 24 41.4 14 46.7 0 0.0 1 16.7 Pasta 21 36.2 13 43.3 1 25.0 0 0.0 Salted nuts 24 41.4 15 50.0 0 0.0 0 0.0 Soda 38 65.5 23 76.7 1 25.0 4 66.7 Cookies 37 63.8 19 63.3 2 50.0 3 50.0 Of the 122 caregivers, 104 suggested reasons why the individuals in their care do not
want to eat a healthy diet on a regular basis (see Table 15). The same caregiver responses are
presented in Table 16, but in terms of geographic location—the two urban (Broward, Duval)
and two rural (Okeechobee, Bradford) counties.
Table 15. The number and percentage of caregivers who specified reasons why the individual in their care did not eat a healthy diet on a regular basis. N = total number who responded to this question; n = number who endorsed each item. Reasons Why Individuals do not have a Healthy Diet Caregivers
(N=104) n %
The individual does not like the taste of foods that he/she should eat more of
38 36.5
The individual likes the taste of foods that he/she should eat less of 40 38.5 The individual likes to buy his/her own food but finds that the foods he/she should eat more of are too expensive
12 11.5
37
The individual does not understand the importance of eating a healthy diet
43 41.3
The individual does not know that some foods are good for him/her and others are not so good
34 32.7
The individual does not want to learn how to cook healthy meals for him/herself even though he/she is encouraged to do so
12 11.5
The individual eats what everyone else is eating because this is easier than preparing his/her own meals
17 16.3
The individual finds it easier to go and get “fast food” for his/her meals
16 15.4
The individual is not interested in changing his/her diet to one that is healthier for him/her
11 10.6
Other reasons why the individual you care for does not eat a healthy diet
20 19.2
Table 16. The number and percentage of caregivers who specified reasons why the individual in their care did not eat a healthy diet on a regular basis, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item.
Reasons Why Individuals do not have a Healthy Diet Caregivers
Broward (N=58)
Duval (N=30)
Okeechobee (N=3)
Bradford (N=6)
n % n % n % n % The individual does not like the taste of foods that he/she should eat more of
26 44.8 9 30.0 0 0.0 1 16.7
The individual likes the taste of foods that he/she should eat less of
27 46.6 7 23.3 1 33.3 1 16.7
The individual likes to buy his/her own food but finds that the foods he/she should eat more of are too expensive
1 1.7 10 33.3 0 0.0 1 16.7
The individual does not understand the importance of eating a healthy diet
29 50.0 10 33.3 0 0.0 2 33.3
The individual does not know that some foods are good for him/her and others are not so good
25 43.1 5 16.7 1 33.3 1 16.7
The individual does not want to 4 6.9 8 26.7 0 0.0 0 0.0
38
learn how to cook healthy meals for him/herself even though he/she is encouraged to do so The individual eats what everyone else is eating because this is easier than preparing his/her own meals
5 8.6 7 23.3 1 33.3 4 66.7
The individual finds it easier to go and get “fast food” for his/her meals
7 12.1 9 30.0 0 0.0 0 0.0
The individual is not interested in changing his/her diet to one that is healthier for him/her
8 13.8 3 10.0 0 0.0 0 0.0
Other reasons why the individual you care for does not eat a healthy diet
7 12.1 4 13.3 2 66.7 3 50.0
Of the 122 caregivers, 104 caregivers provided reasons for not wanting or not being able
to facilitate the individuals in their care eating a healthy diet on a regular basis (see Table 17).
The same caregiver responses are presented in Table 18, but in terms of geographic location—
the two urban (Broward, Duval) and two rural (Okeechobee, Bradford) counties.
Table 17. The number and percentage of caregivers who provided reasons for not wanting or not being able to facilitate the individual in their care eating a healthy diet on a regular basis. N = total number who responded to this question; n = number who endorsed each item. Reasons Why Caregivers do not Want to or are Unable to Facilitate the Individuals Eating a Healthy Diet
Caregivers (104)
n % I don’t think eating a healthy diet will make much difference to the individual’s health
4 3.8
I make sure the individual takes his/her vitamins so it really doesn’t matter what he/she eats
10 9.6
The store where I do my grocery shopping has very limited items and I don’t have transportation to go to a larger store
1 1.0
I don’t always have time to prepare a healthy meal 17 16.3 It’s easier to pick up a pizza or other fast food than prepare a meal at home
19 18.3
I am on a limited budget and many of the healthier foods are too expensive
21 20.2
39
The individual is on a limited budget 14 13.5 My own knowledge about healthy eating is limited 9 8.7 I am not a very good cook and don’t know how to cook healthy meals 3 2.9 Everyone in the house eats the same foods as the individual and have no health problems
13 12.5
I don’t have time to teach the individual how to cook healthy meals for him/herself
11 10.6
If the individual wanted to cook his/her own meals, I would have to supervise and I don’t have time
16 15.4
I don’t think it is safe for the individual to be near a stove or in the kitchen
18 17.3
I don’t think the individual is capable of preparing his/her own meals 28 26.9 I don’t think the individual is capable of doing his/her own grocery shopping
17 16.3
Other reasons you may have for not wanting or not being able to facilitate the individual eating a healthy diet on a regular basis
26 25
Table 18. The number and percentage of caregivers who provided reasons for not wanting or not being able to facilitate the individual in their care eating a healthy diet on a regular basis, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Reasons Why Caregivers do not Want to or are Unable to Facilitate the Individuals Eating a Healthy Diet
Caregivers
Broward (N=58)
Duval (N=30)
Okeechobee (N=3)
Bradford (N=6)
n % n % n % n % I don’t think eating a healthy diet will make much difference to the individual’s health
3 5.2 0 0.0 0 0.0 1 16.7
I make sure the individual takes his/her vitamins so it really doesn’t matter what he/she eats
4 6.9 4 13.3 0 0.0 2 33.3
The store where I do my grocery shopping has very limited items and I don’t have transportation to go to a larger store
0 0.0 1 3.3 0 0.0 0 0.0
I don’t always have time to prepare a healthy meal
2 3.4 10 33.3 1 33.3 2 33.3
It’s easier to pick up a pizza or other fast food than prepare a
1 1.7 15 50.0 1 33.3 2 33.3
40
meal at home I am on a limited budget and many of the healthier foods are too expensive
3 5.2 13 43.3 1 33.3 4 66.7
The individual is on a limited budget
3 5.2 7 23.3 0 0.0 2 33.3
My own knowledge about healthy eating is limited
5 8.6 2 6.7 0 0.0 2 33.3
I am not a very good cook and don’t know how to cook healthy meals
0 0.0 1 3.3 0 0.0 2 33.3
Everyone in the house eats the same foods as the individual and have no health problems
10 17.2 2 6.7 0 0.0 1 16.7
I don’t have time to teach the individual how to cook healthy meals for him/herself
6 10.3 2 6.7 1 33.3 2 33.3
If the individual wanted to cook his/her own meals, I would have to supervise and I don’t have time
9 15.5 4 13.3 0 0.0 2 33.3
I don’t think it is safe for the individual to be near a stove or in the kitchen
12 20.7 3 10.0 0 0.0 2 33.3
I don’t think the individual is capable of preparing his/her own meals
17 29.3 5 16.7 0 0.0 4 66.7
I don’t think the individual is capable of doing his/her own grocery shopping
11 19.0 2 6.7 0 0.0 3 33.3
Other reasons you may have for not wanting or not being able to facilitate the individual eating a healthy diet on a regular basis
17 29.3 2 6.7 2 66.7 1 16.7
Discussion
The data indicate there were no meaningful differences in caregiver perceptions of the health
and wellness needs of individuals with developmental disabilities across the four counties.
Thus, the findings are discussed below in terms of the overall aggregate data.
41
Caregivers are cognizant of the importance of physical exercise for individuals with
developmental disabilities in their care and were able to identify specific physical activities
around the house that constituted physical exercise. For example, individuals in their care
engaged in such activities as making their own beds, taking out the garbage, doing laundry,
washing dishes, folding their own clothes, cleaning counters and sinks, sweeping and mopping
the floor, grocery shopping, cleaning the bathroom, dusting, wiping down cabinets, and
vacuuming. However, they also noted the individuals could engage in more of these activities,
which are daily living skills that also contribute towards their physical health. They noted that
some individuals in their care do not want to engage in these kinds of activities because they
don’t like to or are not interested in doing them, they simply refuse to do them or believe the
household chores are too difficult for them, they cannot follow directions to begin and
complete the tasks, or do not have the physical capacity to complete the chores. In some cases,
caregivers noted they did not want the individuals engaging in household chores because it
takes too long for the individuals to complete them and it is easier for the support staff to do
them themselves, the chores are not done properly, and it takes too time to teach or supervise
the individuals.
Caregivers identified several physical exercises the individuals engaged in at their place
of residence and in the community, including bowling, walking on a treadmill, dancing, walking
in their neighborhood or walking trails, playing Wii games and, less so, team sports. They
indicated more individuals could engage in similar activities, but these individuals were not
interested in physical exercise, preferred to watch TV, could not afford membership fees at
community facilities or to buy the equipment for use at home, are not physically able to engage
in these activities, or lacked public transportation to get them to health and wellness entities.
Some caregivers did not want individuals in their care to engage in physical exercise because
they do not have the time to take them to community facilities, do not believe the community
facilities are safe for these individuals, do not have money to buy the equipment to use at the
residence, believe it is not safe for the individuals to go running/walking/riding a bike in the
local neighborhood, do not have enough space for exercise equipment at the residence, and do
not have money to pay the fees at community facilities.
42
All but a quarter of the caregivers suggested the individuals in their care have a healthy
diet that includes fresh fruit and vegetables, even though almost all believed it is important.
Indeed, the majority of the caregivers knew the essentials of a healthy diet and could list what
foods the individuals should eat more and less of. The caregivers noted some of the individuals
did not have a healthy diet because they preferred the taste of what they should eat less of and
did not like the taste of what they should eat more of, they do not understand the importance
of a healthy diet, and do not know which foods are good or not good for them. Some caregivers
did not facilitate good eating habits in the individuals in their care because of time constraints,
limited budget, do no have time to teach or supervise the individuals who want to cook healthy
meals, ease and cost of picking up fast foods compared to cooking a healthy meal, and because
the individuals were given supplemental vitamins, it really didn’t matter what they ate. They
also noted that everyone in their group homes ate the same meals, the ingredients for which
are bought in bulk for cost savings.
In summary, although the caregivers recognize the importance of physical exercise and
healthy foods for the individuals in their care, they are not always able to engage them in
physical exercise or encourage healthy eating habits for a variety of very practical reasons.
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STUDY 2: Individual Survey
Method
Survey Methodology
An internet-‐based survey was developed for individuals with developmental disabilities and
advertised via list serves to the developmental disabilities community in Florida, with an
emphasis on the Broward, Duval, Okeechobee and Bradford counties. The survey and all other
information were provided to participants on the survey and no identifying information on the
participants was available to the researchers. Electronic consent was elicited from participants
via an informed consent document approved by the Florida Developmental Disabilities Council
(FDDC). Submission of a completed electronic consent form indicated a participant’s consent to
take part in the study, and all submitted data were stored in a secure server. Online data
collection is considered a valid and reliable technique when compared with mailed approaches
(Gosling, Vazire, Srivastava, & John, 2004) and is now a frequently used tool in behavioral
research (Gosling & Johnson, 2010; Granello & Wheaton, 2004). Hard copies of the survey were
also available for face-‐to-‐face and telephone administration to the individuals, with caregiver
assistance, as necessary. All survey data (i.e., web-‐based responses, face-‐to-‐face and telephone
interviews) were entered and maintained via SurveyMonkey.com, Portland, Oregon, USA.
The American Health and Wellness Institute and FDDC sent recruitment emails for
participation in the study to community providers and families with a member with
developmental disabilities. This e-‐mail contained an explanation of the survey and its
objectives, consent form, and link to the survey. A similar e-‐mail was sent again 4 weeks, 2
months and 4 months later to the same participants to remind them about the survey. The
survey link remained active and the survey was available for a total of 8 months. There was no
financial incentive to participate in the survey, but the participants and community provider
agencies could request a copy of the final report.
Survey Development
We reviewed current survey methodology as well as current literature on physical activity,
health and nutrition in individuals with developmental disabilities. The literature review and the
44
authors’ collective experience in the field of developmental disabilities revealed that no existing
tools fully met the needs of the current survey. Thus, we developed a new survey for individuals
with developmental disabilities that focused on their health and wellness needs. In addition, we
wanted to know what the individuals perceived as barriers to using the health and wellness
services available in their community, and what could be done to remove some of these
barriers. The survey was pilot tested, reviewed by FDDC, revised and finalized. The final version
was translated into Spanish using back-‐translation method, reviewed by FDDC, revised and
finalized. Both English and Spanish versions were available on the Internet via Survey
Monkey.com and in hard copy.
Survey Respondents
Of the 102 individuals with developmental disabilities who participated, 44 (43.14%) responded
online, 55 (53.92%) responded in face-‐to-‐face interviews, and 3 (2.94%) by telephone
interviews. Of the 102 individuals, 84 (82.35%) provided sociodemographic information. Of
these 84 participants, 38 (46.4%) were females. The participants were from the following age
ranges: 20 years or below—2 (2.4%); 21-‐30 years—24 (28.6%); 31-‐40 years—26 (31%); 41-‐50
years—18 (21.4%); 51-‐60 years—10 (11.9%); and over 60 years—4 (4.8%). In terms of where
they resided, 20 (23.8%) were from supported living, 30 (35.7%) from group homes (≥6
persons), 5 (6%) from small group homes (3 persons), 28 (33.3%) from family home with
supports, and 1 (1.2%) from in-‐home support with a non-‐relative. Caregivers reported that
most of the individuals functioned at the mild level of intellectual disability, with a few at the
moderate level. In terms of the counties the individuals resided in, 35 (34.8%) were from
Broward, 45 (44.1%) from Duval, 7 (6.9%) from Okeechobee, 9 (8.8%) from Bradford, and 6
(5.9%) unspecified. Whether the percentage of individual participants from these counties is
proportionate to the total population of individuals with developmental disabilities in these
counties could not be determined due to the lack of accurate demographic information
available.
45
Results
Physical Activity
Physical activity was defined as any body movement that works one’s muscles and requires
more energy than resting (e.g., walking, running, dancing, swimming, yoga, gardening, and
doing household chores). Physical activity generally refers to any movement that enhances
health. Overall, 102 individuals with developmental disabilities completed the survey, but they
did not complete all items. The data are presented in terms of the number of individuals who
completed each item. Given the diversity of their cognitive limitations, caregivers most familiar
with the individuals assisted them to understand the questions and interpreted their answers
or completed the on-‐line survey together with them.
Identifying Physical Activity
Of the 102 individuals with developmental disabilities, 95 (93.14%) responded to 10 questions
that required them to differentiate between physical and nonphysical activities. Of the 95 who
responded, 91 (95.8%) correctly identified working out on a stationary bicycle as physical
activity; 93 (97.9%) correctly identified tennis as physical activity; 81 (85.3%) sleeping in a
hammock as not a physical activity; 76 (80%) yoga as a physical activity; 89 (93.7%) stretching as
a physical activity; 91 (95.8%) jogging as a physical activity; 81 (85.3%) relaxing at the beach as
not a physical activity; 92 (96.8%) lifting weights as a physical activity; 81 (85.3%) watching TV
as not a physical activity; and 93 (97.9%) cycling as a physical activity.
Physical Activities Around the House
The individuals were asked if they did chores at their place of residence. Of the 102 individuals,
94 (92.16%) responded to this question. Of the 94 individuals, 91 (96.8%) indicated they did
chores around the house, with most doing multiple chores. The table below specifies the
household chores the individuals indicated they currently engaged in or would like to do in
future (see Table 19). The same data from the individuals are presented in Table 20, but in
terms of geographic location—the two urban (Broward, Duval) and two rural (Okeechobee,
Bradford) counties.
46
Table 19. The number and percentage of individuals who specified household chores they do now and would like to do in future. N = total number who responded to this question; n = number who responded to each item.
Household Chores Individual Does Now Individual Would Like to Do in Future
N n % N n % Vacuuming 91 53 58.2 27 20 74.1 Washing the car 91 19 20.9 27 18 66.7 Cleaning the bathroom 91 59 64.8 27 17 63.0 Mowing the lawn 91 11 12.1 27 7 25.9 Washing the dishes 91 73 80.2 27 20 74.1 Yard work 91 25 27.5 27 19 70.4 Making the bed 91 80 87.9 27 20 74.1 Table 20. The number and percentage of individuals who specified household chores they do now and would like to do in future presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Household Chores Individual Does Now Broward
(N=35) Duval (N=45)
Okeechobee (N=5)
Bradford (N=6)
n % n % n % n % Vacuuming 14 40.0 33 73.3 3 60.0 3 50.0 Washing the car 8 22.9 9 20.0 1 20.0 1 16.7 Cleaning the bathroom 19 54.3 34 75.6 3 60.0 3 50.0 Mowing the lawn 3 8.6 7 15.6 0 0.0 1 16.7 Washing the dishes 27 77.1 39 86.7 3 60.0 4 66.7 Yard work 8 22.9 16 35.6 0 0.0 1 16.7 Making the bed 32 91.4 38 84.4 4 80.0 6 100 Other chores 30 85.7 32 71.1 2 40.0 6 100 Household Chores Individual Would Like to Do in Future Broward
(N=9) Duval (N = 14)
Okeechobee (N=0)
Bradford (N=4)
n % n % n % n % Vacuuming 7 77.8 10 71.4 0 0.0 3 75.0 Washing the car 8 88.9 6 42.9 0 0.0 4 100 Cleaning the bathroom 6 66.7 8 57.1 0 0.0 3 75.0 Mowing the lawn 1 11.1 5 35.7 0 0.0 1 25.0 Washing the dishes 9 100 7 50.0 0 0.0 4 100 Yard work 6 66.7 10 71.4 0 0.0 3 75.0 Making the bed 8 88.9 8 57.1 0 0.0 4 100
47
The individuals who indicated they wanted to do more household chores were asked
why they did not do these chores. Of the 27 individuals who wanted to do more, 26 provided
one or more reasons for not doing them now (see Table 21). The same data from the
individuals are presented in Table 22, but in terms of geographic location—the two urban
(Broward, Duval) and two rural (Okeechobee, Bradford) counties.
Table 21. The number and percentage of individuals who specified reasons why they did not do additional chores they would like to do. N = total number who responded to this question; n = number who endorsed each item. Reasons Individuals Gave for Not Doing Additional Chores Individuals
(N=26) n %
I don’t know how to do these chores 15 57.69 Staff/my parents tell me that it takes too long 7 26.92 When I try to do something staff/my parents tell me that I don’t do it properly
5 19.23
Staff/my parents don’t think it is safe for me to do some of these chores
12 46.15
Staff/my parents won’t teach me how to do these chores 7 26.92 Staff/my parents don’t have time to supervise me while I do these chores
8 30.77
Staff/my parents don’t reward me when I do the chores 2 7.69 Table 22. The number and percentage of individuals who specified reasons why they did not do additional chores they would like to do, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Reasons Individuals Gave for Not Doing Additional Chores Individuals
Broward (N=9)
Duval (N=13)
Okeechobee (N=0)
Bradford (N=4)
n % n % n % n % I don’t know how to do these chores
5 55.6 9 69.2 0 0.0 1 25.0
Staff/my parents tell me that it takes too long
1 11.1 6 46.2 0 0.0 0 0.0
When I try to do something staff/my parents tell me that I don’t do it properly
0 0.0 4 30.8 0 0.0 1 25.0
48
Staff/my parents don’t think it is safe for me to do some of these chores
5 55.6 6 46.2 0 0.0 1 25.0
Staff/my parents won’t teach me how to do these chores
2 22.2 5 38.5 0 0.0 0 0.0
Staff/my parents don’t have time to supervise me while I do these chores
3 33.3 5 38.5 0 0.0 0 0.0
Staff/my parents don’t reward me when I do the chores
1 11.1 1 7.7 0 0.0 0 0.0
Physical Exercises at Home and in the Community
Of the 102 individuals with developmental disabilities, 89 (87.25%) responded to the question
regarding exercising at their place of residence. Of the 89 who responded, 66 (74.15%)
indicated they engaged in physical exercises at their place of residence. The table below
specifies physical exercises the individuals purportedly engaged in and which exercises they
would like to do more of (see Table 23). The same data from the individuals are presented in
Table 24, but in terms of geographic location—the two urban (Broward, Duval) and two rural
(Okeechobee, Bradford) counties.
Table 23. The number and percentage of individuals who specified the physical exercises they engaged in now at home and would like to do so in future. N = total number who responded to this question; n = number who endorsed each item.
Physical Exercises Individual Does Now Individual Would Like to Do in Future
N n % N n % Stretching 66 33 50.0 26 15 57.7 Exercise bands 66 13 19.7 26 10 38.5 Yoga 66 18 27.3 26 12 46.2 Exercise bike 66 20 30.3 26 17 65.4 Lifting weights 66 19 28.8 26 15 57.7 Treadmill 66 9 13.6 26 17 65.4 Playing Wii games 66 23 34.8 26 16 61.5 Weight machines 66 7 10.6 26 11 42.3
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Table 24. The number and percentage of individuals who specified the physical exercises they engaged in now at home and would like to do so in future, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item.
Physical Exercises Individual Does Now Broward
(N=27) Duval (N=32)
Okeechobee (N=2)
Bradford (N=5)
n % n % n % n % Stretching 10 37.0 19 59.4 2 100 2 40.0 Exercise bands 2 7.4 11 34.4 0 0.0 0 0.0 Yoga 4 14.8 13 40.6 1 50.0 0 0.0 Exercise bike 3 11.1 15 46.9 0 0.0 2 40.0 Lifting weights 4 14.8 14 43.8 0 0.0 1 20.0 Treadmill 3 11.1 6 18.8 0 0.0 0 0.0 Playing Wii games 11 40.7 10 31.3 1 50.0 1 20.0 Weight machines 1 3.7 6 18.8 0 0.0 0 0.0 Physical Exercises Individual Would Like to Do in Future Broward
(N=12) Duval (N = 11)
Okeechobee (N=1)
Bradford (N=2)
n % n % n % n % Stretching 5 41.7 7 63.6 1 100 2 100 Exercise bands 3 25.0 6 54.5 0 0.0 1 50.0 Yoga 4 33.3 7 63.6 0 0.0 1 50.0 Exercise bike 5 41.7 9 81.8 1 100 2 100 Lifting weights 5 41.7 7 63.6 1 100 2 100 Treadmill 7 58.3 9 81.8 0 0.0 1 50.0 Playing Wii games 7 58.3 6 54.5 1 100 2 100 Weight machines 5 41.7 4 36.4 1 100 1 50.0
The individuals who indicated they wanted to engage in other physical exercises were
asked why they did not do them at home. Of those individuals who wanted to do more, 26
provided one or more reasons for not doing them now (see Table 25). The same data from the
individuals are presented in Table 26, but in terms of geographic location—the two urban
(Broward, Duval) and two rural (Okeechobee, Bradford) counties.
50
Table 25. The number and percentage of individuals who specified reasons why they did not do additional physical exercises at home they would like to do. N = total number who responded to this question; n = number who endorsed each item. Reasons for Not Engaging in Physical Exercises at Home They Would Like To
Individuals (N=26)
n % I don’t have the exercise equipment at home 16 61.54 Staff/my parents don’t have the money to buy them 11 42.31 I don’t have the money to buy the equipment 13 50.00 There is no space in the house 10 38.46 There is no space in my room 12 46.15 Staff/my parents don’t let me go out of the house to exercise 3 11.54 I am too scared to go in the neighborhood to run, walk or ride a bike 5 19.23 I don’t know how to do these exercises 10 38.46 Staff/my parents tell me it’s not safe 6 23.08 Staff/my parents don’t show me how to do these exercises 2 7.69 Staff/my parents don’t have time to supervise me while I do exercises 7 26.92 Staff/my parents don’t reward me when I do exercises 1 3.85 Table 26. The number and percentage of individuals who specified reasons why they did not do additional physical exercises at home they would like to do, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Reasons for Not Engaging in Physical Exercises at Home They Would Like To
Individuals
Broward (N=12)
Duval (N=11)
Okeechobee (N=1)
Bradford (N=2)
n % n % n % n % I don’t have the exercise equipment at home
5 41.7 9 81.8 1 100 1 50.0
Staff/my parents don’t have the money to buy them
3 25.0 5 45.5 1 100 2 100
I don’t have the money to buy the equipment
4 33.3 6 54.5 1 100 2 100
There is no space in the house 1 8.3 7 63.6 1 100 1 50.0 There is no space in my room 2 16.7 7 63.6 1 100 2 100 Staff/my parents don’t let me go out of the house to exercise
1 8.3 1 9.1 0 0.0 1 50.0
I am too scared to go in the neighborhood to run, walk or ride a bike
1 8.3 2 18.2 0 0.0 2 100
51
I don’t know how to do these exercises
2 16.7 6 54.5 1 100 1 50.0
Staff/my parents tell me it’s not safe
3 25.0 2 18.2 0 0.0 1 50.0
Staff/my parents don’t show me how to do these exercises
0 0.0 1 9.1 0 0.0 1 50.0
Staff/my parents don’t have time to supervise me while I do exercises
5 41.7 0 0.0 1 100 1 50.0
Staff/my parents don’t reward me when I do exercises
1 8.3 0 0.0 0 0.0 0 0.0
The individuals who indicated they did not engage in any physical exercises at home
were asked their reasons for not doing so. Of those individuals who did not do any at home, 23
provided one or more reasons for not doing them (see Table 27). The same data from the
individuals are presented in Table 28, but in terms of geographic location—the two urban
(Broward, Duval) and two rural (Okeechobee, Bradford) counties.
Table 27. The number and percentage of individuals who specified reasons why they did not do any physical exercises at home. N = total number who responded to this question; n = number who endorsed each item. Reasons for Not Engaging in Any Physical Exercises at Home Individuals
(N=23) n %
I don’t like to do them 18 78.26 I am not interested in doing them 19 82.61 All these exercises are too hard for me 5 21.74 I am too busy doing other things 9 39.13 I would much rather watch TV 11 47.83 I am too tired 2 8.70 When I try to do something the staff/my parents tell me that I don’t do it properly
2 8.70
Staff/my parents don’t think it is safe for me to go outside to walk, run, or ride a bike
1 4.35
Staff/my parents will not teach me how to do these exercises 1 4.35 Staff/my parents do not have the time to supervise me while I do exercises
2 8.70
52
Table 28. The number and percentage of individuals who specified reasons why they did not do any physical exercises at home, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Reasons for Not Engaging in Any Physical Exercises at Home Individuals
Broward (N=6)
Duval (N=14)
Okeechobee (N=0)
Bradford (N=2)
n % n % n % n % I don’t like to do them 4 66.7 13 92.9 0 0.0 1 50.0 I am not interested in doing them
6 100 12 85.7 0 0.0 1 50.0
All these exercises are too hard for me
2 33.3 2 14.3 0 0.0 1 50.0
I am too busy doing other things 1 16.7 7 50.0 0 0.0 1 50.0 I would much rather watch TV 3 50.0 7 50.0 0 0.0 1 50.0 I am too tired 0 0.0 1 7.1 0 0.0 1 50.0 When I try to do something the staff/my parents tell me that I don’t do it properly
1 16.7 0 0.0 0 0.0 1 50.0
Staff/my parents don’t think it is safe for me to go outside to walk, run, or ride a bike
0 0.0 0 0.0 0 0.0 1 50.0
Staff/my parents will not teach me how to do these exercises
0 0.0 1 7.1 0 0.0 0 50.0
Staff/my parents do not have the time to supervise me while I do exercises
0 0.0 2 14.2 0 0.0 0 50.0
Physical Activities in Fitness Facilities
Of the 102 individuals, 88 responded to the question whether they attended a fitness
facility in the community. Of the 88, 21 individuals (23.9%) indicated they currently exercised at
a community fitness facility. Of the 102 individuals, 20 (19.6%) responded to the question
whether they would like to attend a community fitness facility. Of the 20, 4 individuals (20%)
indicated they would like to in the future (see Table 29). The same data from the individuals are
presented in Table 30, but in terms of geographic location—the two urban (Broward, Duval)
and two rural (Okeechobee, Bradford) counties.
53
Table 29. The number and percentage of individuals who indicated they attended community fitness facilities now or would like to do so in future. N = total number who responded to this question; n = number who endorsed each item.
Physical Activities in Community Fitness Facilities
Individual Does Now Individual Would Like to Do in Future
N n % N n % Stationary bicycle 21 11 52.38 4 3 75 Treadmill 21 17 80.95 4 2 50 Elliptical machine 21 12 57.14 4 2 50 Exercise ball 21 6 28.57 4 2 50 Passive weights 21 9 42.86 4 3 75 Muscle toning 21 5 23.81 4 2 50 Weights 21 12 57.14 4 2 50 Softball 21 6 28.57 2 2 50 Table 30. The number and percentage of individuals who indicated they attended community fitness facilities now or would like to do so in future, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Physical Activities in Community Fitness Facilities Individual Does Now
Broward (N=9)
Duval (N=11)
Okeechobee (N=1)
Bradford (N=0)
n % n % n % n % Stationary bicycle 5 55.6 6 54.5 0 0.0 0 0.0 Treadmill 8 88.9 9 81.8 0 0.0 0 0.0 Elliptical machine 3 33.3 9 81.8 0 0.0 0 0.0 Exercise ball 0 0.0 6 54.5 0 0.0 0 0.0 Passive weights 0 0.0 9 81.8 0 0.0 0 0.0 Muscle toning 0 0.0 5 45.5 0 0.0 0 0.0 Weights 3 33.3 9 81.8 0 0.0 0 0.0 Softball 1 11.1 5 45.5 0 0.0 0 0.0 Physical Activities in Community Fitness Facilities Individual Would Like to Do in Future
Broward (N=2)
Duval (N = 2)
Okeechobee (N=0)
Bradford (N=0)
n % n % n % n % Stationary bicycle 2 100 1 50.0 0 0.0 0 0.0 Treadmill 1 50.0 1 50.0 0 0.0 0 0.0 Elliptical machine 1 50.0 1 50.0 0 0.0 0 0.0 Exercise ball 1 50.0 1 50.0 0 0.0 0 0.0 Passive weights 2 100 1 50.0 0 0.0 0 0.0
54
Muscle toning 1 50.0 1 50.0 0 0.0 0 0.0 Weights 1 50.0 1 50.0 0 0.0 0 0.0 Softball 1 50.0 1 50.0 0 0.0 0 0.0
Of the 20 individuals who answered how often they attend community fitness facilities,
2 (10%) reported every day, 10 (50%) reported once a week, 2 (10%) reported once a month,
and 6 (30%) reported every so often.
The individuals who indicated they did not attend any community fitness facilities at all
were asked their reasons for not doing so. Of the 81 individuals who did attend any community
fitness facilities, 66 provided one or more reasons for not doing so (see Table 31). The same
data from the individuals are presented in Table 32, but in terms of geographic location—the
two urban (Broward, Duval) and two rural (Okeechobee, Bradford) counties.
Table 31. The number and percentage of individuals who specified reasons why they did not do any physical exercises in community fitness facilities. N = total number who responded to this question; n = number who endorsed each item. Reasons for Not Engaging in Any Physical Exercises at Community Fitness Facilities
Individuals (N=66)
n % I am not interested 45 68.18 I’d rather watch television 33 50.00 I am always too tired 9 13.64 My body is sore and using fitness equipment will only make it worse 4 6.06 I don’t have the money 25 37.88 I don’t have the right clothes to wear 6 9.09 I don’t like to go alone 11 16.67 Staff/my parents won’t take me to the gym 4 6.06 Staff/my parents tell me it’s not safe to go to the gym 2 3.03 Staff/my parents don’t go to the gym so I don’t feel like going 6 9.09 Staff/my parents will not take me at a time that is convenient for me 4 6.06 There are not enough staff at the home to take me 6 9.09 None of my friends go to the gym 8 12.12 I don’t know where the gym is 7 10.60 I don’t know anything about gyms 6 9.09 The local gym is too far away from where I live 4 6.06 I don’t know how to use the equipment at the gym 9 13.64 The staff at the gym do not teach me how to use the equipment 6 9.09 The equipment isn’t adapted in such a way that it is easy for me to use 8 12.12
55
People at the gym stare at me 5 7.58 The staff at the gym are not very friendly 4 6.06 Table 32. The number and percentage of individuals who specified reasons why they did not do any physical exercises in community fitness facilities, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Reasons for Not Engaging in Any Physical Exercises at Community Fitness Facilities
Individuals
Broward (N=23)
Duval (N=34)
Okeechobee (N=2)
Bradford (N=7)
n % n % n % n % I am not interested 21 91.3 24 70.6 0 0.0 0 0.0 I’d rather watch television 11 47.8 21 61.8 0 0.0 1 14.3 I am always too tired 2 8.7 5 14.7 0 0.0 2 28.6 My body is sore and using fitness equipment will only make it worse
1 4.3 2 5.9 0 0.0 1 14.3
I don’t have the money 10 43.5 10 29.4 1 50.0 4 57.1 I don’t have the right clothes to wear
0 0.0 2 5.9 1 50.0 3 42.9
I don’t like to go alone 4 17.4 4 11.8 1 50.0 2 28.6 Staff/my parents won’t take me to the gym
1 4.3 1 2.9 0 0.0 2 28.6
Staff/my parents tell me it’s not safe to go to the gym
1 4.3 1 2.9 0 0.0 0 0.0
Staff/my parents don’t go to the gym so I don’t feel like going
1 4.3 4 11.8 0 0.0 1 14.3
Staff/my parents will not take me at a time that is convenient for me
1 4.3 3 8.8 0 0.0 0 0.0
There are not enough staff at the home to take me
4 17.4 2 5.9 0 0.0 0 0.0
None of my friends go to the gym
4 17.4 3 8.8 1 50.0 0 0.0
I don’t know where the gym is 3 13.0 3 8.8 1 50.0 0 0.0 I don’t know anything about gyms
1 4.3 1 2.9 1 50.0 3 42.9
The local gym is too far away from where I live
1 4.3 3 8.8 0 0.0 0 0.0
I don’t know how to use the 3 13.0 3 8.8 1 50.0 2 28.6
56
equipment at the gym The staff at the gym do not teach me how to use the equipment
2 8.7 2 5.9 0 0.0 2 28.6
The equipment isn’t adapted in such a way that it is easy for me to use
2 8.7 1 2.9 1 50.0 4 57.1
People at the gym stare at me 2 8.7 0 0.0 1 50.0 2 28.6 The staff at the gym are not very friendly
2 8.7 1 2.9 0 0.0 1 14.3
Physical Activities in Parks and Recreation Facilities Of the 102 individuals, 85 responded to the question whether they engaged in any
activities in parks and other recreational facilities. Of the 85, 51 individuals (60%) indicated they
currently engaged in activities in these facilities. Of the 102 individuals, 51 (60%) responded to
the question whether they would like to engage in other activities in parks and other
recreational facilities. Of the 51, 11 individuals (21.6%) indicated they would like to in the future
(see Table 33). The same data from the individuals are presented in Table 34, but in terms of
geographic location—the two urban (Broward, Duval) and two rural (Okeechobee, Bradford)
counties.
Table 33. The number and percentage of individuals who indicated they engaged in activities in parks and other recreational facilities now or would like to do so in future. N = total number who responded to this question; n = number who endorsed each item. Physical Activities in Parks and Other Recreation Facilities
Individual Does Now Individual Would Like to Do in Future
N n % N n % Hiking 51 26 51.0 11 8 72.7 Boating 51 12 23.5 11 9 81.8 Swimming 51 37 72.5 11 9 81.8 Dance 51 32 62.7 11 7 63.6 Karate 51 4 7.8 11 6 54.5 Tai chi 51 4 7.8 11 6 54.5 Frisbee 51 21 41.2 11 6 54.5
57
Of the 51 individuals who answered how often they engaged in activities in parks and
other recreational facilities, 7 (13.7%) reported every day, 15 (29.4%) reported once a week, 18
(35.3%) reported once a month, and 11 (22.6%) reported every so often.
Table 34. The number and percentage of individuals who indicated they engaged in activities in parks and other recreational facilities now or would like to do so in future, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item.
Physical Activities in Parks and Other Recreation Facilities Individual Does Now
Broward (N=22)
Duval (N=26)
Okeechobee (N=1)
Bradford (N=2)
n % n % n % n % Hiking 8 36.4 17 65.4 0 0.0 1 50.0 Boating 5 22.7 6 23.1 0 0.0 1 50.0 Swimming 16 72.7 18 69.2 1 100 2 100 Dance 12 54.5 19 73.1 0 0.0 1 50.0 Karate 0 0.0 4 15.4 0 0.0 0 0.0 Tai chi 1 4.5 3 11.5 0 0.0 0 0.0 Frisbee 9 40.9 12 46.2 0 0.0 0 0.0 Physical Activities in Parks and Other Recreation Facilities Individual Would Like to Do in Future
Broward (N=3)
Duval (N = 6)
Okeechobee (N=1)
Bradford (N=1)
n % n % n % n % Hiking 2 66.7 5 83.3 0 0.0 1 100 Boating 3 100 5 83.3 0 0.0 1 100 Swimming 3 100 4 66.7 1 100 1 100 Dance 2 66.7 4 66.7 0 0.0 1 100 Karate 1 33.7 4 66.7 0 0.0 1 100 Tai chi 1 33.7 4 66.7 0 0.0 1 100 Frisbee 2 66.7 3 50.0 0 0.0 1 100
The individuals who indicated they wanted to engage in other activities in parks and
other recreation facilities were asked why they did not do them. Of those individuals who
wanted to do more, 11 provided one or more reasons for not doing them now (see Table 35).
The same data from the individuals are presented in Table 36, but in terms of geographic
location—the two urban (Broward, Duval) and two rural (Okeechobee, Bradford) counties.
58
Table 35. The number and percentage of individuals who specified reasons why they did not engage in other activities in parks and recreations facilities. N = total number who responded to this question; n = number who endorsed each item. Reasons for Not Engaging in other Activities They Would Like To in Parks and Other Recreation Facilities
Individuals (N=11)
n % I don’t know how to do these activities 6 54.55 I don’t have proper clothes for these activities 3 27.27 Staff/my parents tell me it is not safe 1 9.09 I or my parents cannot afford to pay the fees I have to pay sometimes 6 54.55 I don’t have transportation to the places where I can do these activities
4 36.36
These activities are not set up for people with disabilities 3 27.27 These activities are not offered at a time that is convenient for me 6 54.55 The staff at these places tell me that it is not safe 1 9.09 People stare at me 3 27.27 Other reasons 1 9.09 Table 36. The number and percentage of individuals who specified reasons why they did not engage in other activities in parks and recreations facilities, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Reasons for Not Engaging in other Activities They Would Like To in Parks and Other Recreation Facilities
Individuals
Broward (N=3)
Duval (N=6)
Okeechobee (N=1)
Bradford (N=1)
n % n % n % n % I don’t know how to do these activities
1 33.3 3 50.0 1 100 1 100
I don’t have proper clothes for these activities
0 0.0 2 33.3 1 100 0 0.0
Staff/my parents tell me it is not safe
0 0.0 1 16.7 0 0.0 0 0.0
I or my parents cannot afford to pay the fees I have to pay sometimes
0 0.0 4 66.7 1 100 1 100
I don’t have transportation to the places where I can do these activities
1 33.3 3 33.3 0 0.0 0 0.0
These activities are not set up 0 0.0 1 16.7 1 100 1 100
59
for people with disabilities These activities are not offered at a time that is convenient for me
1 33.3 3 50.0 1 100 1 100
The staff at these places tell me that it is not safe
0 0.0 0 0.0 1 100 0 0.0
People stare at me 1 33.3 0 0.0 1 100 1 100 Other reasons 0 0.0 1 16.7 0 0.0 0 0.0 The individuals who indicated they did not attend any activities in parks and other
recreational facilities at all were asked their reasons for not doing so. Of the 51 individuals who
did attend any community fitness facilities, 34 provided one or more reasons for not doing so
(see Table 37). The same data from the individuals are presented in Table 38, but in terms of
geographic location—the two urban (Broward, Duval) and two rural (Okeechobee, Bradford)
counties.
Table 37. The number and percentage of individuals who specified reasons why they did not engage in any activities in parks and other recreational facilities. N = total number who responded to this question; n = number who endorsed each item. Reasons for Not Engaging in Any Activities in Parks and Other Recreational Facilities
Individuals (N=34)
n % I am not interested 25 73.53 I’d rather watch television 20 58.82 I am always too tired 5 14.71 I am too sick 2 5.88 My body is sore and using fitness equipment will only make it worse 3 8.82 I don’t have the money for the fees you have to pay sometimes 10 29.41 I don’t have the transportation to get there 8 23.53 Staff/my parents won’t take me 3 8.82 Staff/my parents don’t do any of these activities so I don’t feel like doing them
1 2.94
Staff/my parents tell me it’s not safe 1 2.94 There are not enough staff at the home to take me 1 2.94
60
Table 38. The number and percentage of individuals who specified reasons why they did not engage in any activities in parks and other recreational facilities, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Reasons for Not Engaging in Any Activities in Parks and Other Recreational Facilities
Individuals
Broward (N=9)
Duval (N=18)
Okeechobee (N=2)
Bradford (N=5)
n % n % n % n % I am not interested 9 100 14 77.8 1 50.0 1 20.0 I’d rather watch television 5 55.6 13 72.2 1 50.0 1 20.0 I am always too tired 0 0.0 3 16.7 1 50.0 1 20.0 I am too sick 0 0.0 2 11.1 0 0.0 0 0.0 My body is sore and using fitness equipment will only make it worse
0 0.0 2 11.1 0 0.0 1 20.0
I don’t have the money for the fees you have to pay sometimes
2 22.2 5 27.8 0 0.0 3 60.0
I don’t have the transportation to get there
1 11.1 5 27.8 1 50.0 1 20.0
Staff/my parents won’t take me 1 11.1 2 11.1 0 0.0 0 0.0 Staff/my parents don’t do any of these activities so I don’t feel like doing them
0 0.0 1 5.6 0 0.0 0 0.0
Staff/my parents tell me it’s not safe
0 0.0 1 5.6 0 0.0 0 0.0
There are not enough staff at the home to take me
1 11.1 0 0.0 0 0.0 0 0.0
Knowledge about Physical Activity The individuals were asked why it is important or good for them to engage in physical
activities. Of the 102 individuals, 84 provided one or more reasons for engaging in physical
activities (see Table 39). The same data from the individuals are presented in Table 40, but in
terms of geographic location—the two urban (Broward, Duval) and two rural (Okeechobee,
Bradford) counties.
61
Table 39. The number and percentage of individuals who specified reasons it is important or good for them to engage in physical activities. N = total number who responded to this question; n = number who endorsed each item. Reasons for Engaging in Physical Activities Individuals
(N=84) n %
It is fun 71 84.52 I like to do it 67 79.76 Staff/my parents tell me to do physical activities and I have to listen to them
32 38.09
It is good for my health 77 91.67 It makes me strong 70 83.33 I like to do what my roommate/friend does 36 42.86 It makes me hungry and I can eat more 36 42.86 It helps me to keep warm when it is cold 33 39.29 It helps me to have a healthy weight 59 70.24 My doctor tells me that I have to do it 55 65.48 It helps me to stay well 65 77.38 It makes me feel good about myself 59 70.24 It helps me to have more energy 58 69.05 It is a good way to meet new people 41 48.81 Table 40. The number and percentage of individuals who specified reasons it is important or good for them to engage in physical activities, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item. Reasons for Engaging in Physical Activities Individuals
Broward (N=31)
Duval (N=44)
Okeechobee (N=3)
Bradford (N=6)
n % n % n % n % It is fun 25 80.6 41 93.2 2 66.7 3 50.0 I like to do it 23 74.2 40 90.9 2 66.7 2 33.3 Staff/my parents tell me to do physical activities and I have to listen to them
11 35.5 20 45.5 0 0.0 1 16.7
It is good for my health 27 87.1 42 95.5 2 66.7 6 100 It makes me strong 20 64.5 42 95.5 2 66.7 6 100 I like to do what my roommate/friend does
11 35.5 23 52.3 0 0.0 2 33.3
It makes me hungry and I can eat more
7 22.6 26 59.1 0 0.0 3 50.0
62
It helps me to keep warm when it is cold
6 19.4 25 56.8 0 0.0 2 33.3
It helps me to have a healthy weight
15 48.4 37 84.1 2 66.7 5 83.3
My doctor tells me that I have to do it
20 64.5 31 70.5 1 33.3 3 50.0
It helps me to stay well 20 64.5 38 86.4 2 66.7 5 83.3 It makes me feel good about myself
15 48.4 37 84.1 2 66.7 5 83.3
It helps me to have more energy 13 41.9 38 86.4 2 66.7 5 83.3 It is a good way to meet new people
7 22.6 31 70.5 0 0.0 3 50.0
Healthy Eating
Of the 102 individuals with developmental disabilities, 83 responded to a series of questions
differentiating healthy from unhealthy foods (see Table 41). The same data from the individuals
are presented in Table 42, but in terms of geographic location—the two urban (Broward, Duval)
and two rural (Okeechobee, Bradford) counties.
Table 41. Individuals’ knowledge and choice of healthy and unhealthy foods. N = total number who responded to this question; n = number who endorsed each item. Healthy vs. Unhealthy Food
choices Individuals with Correct
Choice (N=83)
Food Choices that I Would Make
Individuals’ Choice (N=83)
n % n % Oatmeal vs. Eggs, sausages, bacon
62 74.7 Oatmeal vs. Eggs, sausages, bacon
42 50.6
Vegetable wrap vs. chicken nuggets, hash browns
63 75.9 Vegetable wrap vs. chicken nuggets, hash browns
50 60.2
Vegetable sticks and dip vs. Pretzels, hot dogs, donuts
75 90.4 Vegetable sticks and dip vs. Pretzels, hot dogs, donuts
61 73.5
Salmon on salad vs. TV dinner of meat, potatoes
59 71.1 Salmon on salad vs. TV dinner of meat, potatoes
51 61.4
Fresh fruit salad vs. chocolate cake
71 85.5 Fresh fruit salad vs. chocolate cake
22 26.5
63
Table 42. Individuals’ knowledge and choice of healthy and unhealthy foods, presented by County of residence. N = total number who responded to this question; n = number who endorsed each item.
Healthy vs. Unhealthy Food choices Individuals with Correct Choice
Broward (N=31)
Duval (N=43)
Okeechobee (N=3)
Bradford (N=6)
n % n % n % n % Oatmeal vs. Eggs, sausages, bacon
23 74.2 31 72.1 2 66.7 6 100
Vegetable wrap vs. chicken nuggets, hash browns
17 54.8 37 86.0 3 100 6 100
Vegetable sticks and dip vs. Pretzels, hot dogs, donuts
27 87.1 39 90.7 3 100 6 100
Salmon on salad vs. TV dinner of meat, potatoes
21 67.7 29 67.4 3 100 6 100
Fresh fruit salad vs. chocolate cake
26 83.9 37 86.0 3 100 5 83.3
Food Choices that I Would Make Individuals’ Choice Broward
(N=31) Duval (N = 43)
Okeechobee (N=3)
Bradford (N=6)
n % n % n % n % Oatmeal vs. Eggs, sausages, bacon
12 38.7 27 62.8 0 100 3 50.0
Vegetable wrap vs. chicken nuggets, hash brown
15 48.4 28 65.1 2 66.7 5 83.3
Vegetable sticks and dip vs. Pretzels, hot dogs, donuts
20 64.5 35 81.4 2 66.7 4 66.7
Salmon on salad vs. TV dinner of meat, potatoes
17 54.8 26 60.5 2 66.7 6 100
Fresh fruit salad vs. chocolate cake
11 35.5 7 16.3 1 33.3 3 50.0
Of the 102 individuals with developmental disabilities, 83 individuals responded to a
presentation of a series of foods in terms of whether the foods were healthy or unhealthy.
They could indicate that they were uncertain—which was counted as an unhealthy food. The
responses were: 76 (91.6%)—vegetables are healthy; 66 (79.5%)—cupcakes are unhealthy; 62
64
(74.7%)—hamburgers are unhealthy; 72 (86.7%)—fish is healthy; 65 (78.3%)—low fat milk is
healthy; 69 (83.1%)—chocolate and cakes are unhealthy; 81 (97.6%)—fruits are healthy; 38
(45.8%)—cold cuts are unhealthy; 30 (36.1%)—fatty meats are unhealthy; 56 (67.5%)—ice
cream is unhealthy; 54 (65.1%)—soda pop is unhealthy; 56 (67.5%)—whole grain breads are
healthy; and 57 (68.7%)—potato chips are unhealthy.
Of the 102 individuals, 73 responded to the question why they thought it is important
for them to have healthy foods. Of the 73, 44 (60.3%) reported that it is good for their health.
Other reasons included: 10 (13.7%) lose weight; 10 (13.7%) gives strength, 4 (5.55) avoid
sickness; 2 (2.4%) makes the body look good; and 1 (1.3%) each of the following, provides
vitamins and nutrients, makes the body grow big, and gives energy. Furthermore, of the 102
individuals, 80 responded to the question what they thought may happen if they eat a lot of
unhealthy foods. Of the 80, 50 (62.5%) reported that eating unhealthy foods would make them
overweight. Other reasons included: 15 (18.8%) develop health problems, 6 (7.5%) teeth will
rot, 3 (3.8%) cause diabetes, 2 (2.5%) cause a heart attack, and 1 (1.3%) each of the following,
health problems, makes one lazy, increase cholesterol, and increase blood pressure.
Of the 102 individuals with developmental disabilities, 82 responded to three questions
regarding foods that may help an overweight man lose weight. Their responses were: 65
(79.3%)—fish instead of burgers; 70 (85.4%)—vegetable sticks instead of cold cuts; and 70
(85.4%)—fresh vegetables instead of chocolate cake. On a related theme, the 82 individuals
responded to three questions regarding healthy foods for a woman who just had a heart attack.
Their responses were: 71 (86.6%)—fresh fish instead of ice cream; 66 (80.5%)—fresh vegetables
instead of French fries; 58 (70.7%)—fresh whole wheat bread and buns instead of sausage,
bacon, refried beans and eggs. Finally, the 82 individuals responded to a question regarding a
young man developing strong healthy bones and body: 72 (87.8%)—oatmeal instead of
chocolate cake; 78 (95.1%)—lean chicken instead of cakes, donuts, and pastries; and 76
(92.7%)—fish instead of cheese.
Of the 102 individuals with developmental disabilities, 81 responded to the question
regarding how often should the person eat foods that are healthy: 37 (54.7%)—all the time; 39
(48.1%)—some of the time; and 5 (6.2%)—occasionally.
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Of the 102 individuals with developmental disabilities, 81 responded to the question
whether their caregiver would shop healthy foods for them, with 74 (91.4%) saying yes. Of the
7 who responded that their caregivers would not, they noted the following reasons for it:
limited budget and healthy food is too expensive (4), and they do not think eating healthy foods
on a regular basis will make much difference to my health (3).
Of the 102 individuals with developmental disabilities, 81 responded to the question
whether their caregiver would cook healthy foods for them, with 67 (82.7%) saying yes. Of the
14 who responded that their caregivers would not, they noted the following reasons for it:
don’t know (1); they do not want to cook special meals for me (1); they want me to eat what
everyone else eats at home (3); they do not do a lot of cooking at home (2); they don’t have
time to make a special meal for me (2); and I live independently and cook for myself (5).
Of the 102 individuals with developmental disabilities, 81 responded to the question
whether the individual would be able to do his/her own grocery shopping for healthy foods,
with 42 (51.9%) saying yes. Of the 38 who responded no, they noted multiple reasons for it: 29
(76.32%)—I do not know how to do grocery shopping; 21 (55.26%)—I do not know what foods
to buy; 20 (52.63%)—I do not like going to the grocery store by myself; 20 (52.63%)—I don’t
have money to buy my own food; 17 (44.74%)—staff/my parents tell me what foods to buy; 16
(42.11%)—there is no bus to the grocery store; 7 (18.42%)—I do not know where the grocery
store is; 6 (15.79%)—staff/my parents do not give me money to buy groceries; and 5
(13.16%)—staff/my parents will not take me to the grocery store. Eleven of the 38 individuals
responded they would like to learn to do their own grocery shopping for healthy foods.
When asked if they would be able to do their own cooking of healthy foods, 37 of 80
(46.25%) individuals responded yes. Of the 43 who said no, 38 (88.37%)—I do not know how to
cook; 28 (65.12%)—staff/my parents do not think it is safe for me too cook; 25 (58.14%)—it
would take me too long to cook; 21 (48.83%)—staff/parents tell me that it is just easier if they
do the cooking; 21 (48.83%)—staff/parents tell me the food they prepare is good for me; 14
(32.56%)—I would like someone to help me cook but everyone says they are too busy; 9
(20.93%)—I am too frightened to cook by myself; 8 (18.61%)—I don’t like to cook, and 8
(18.61%)—staff/my parents do not want me to eat meals that are different from what everyone
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else is eating. When asked if they would like to learn to do their own cooking of healthy foods,
13 of 43 (30.23%) individuals responded yes.
Discussion
The data indicate there were no meaningful differences across the four counties in the
individuals’ knowledge and practices with regards to their health and wellness. Thus, the
findings are discussed below in terms of the overall aggregate data.
The vast majority of the individuals who responded correctly identified physical and
nonphysical activities. In line with the caregiver survey, almost all individuals indicated they did
chores at their place of residence, with most engaging in vacuuming their rooms, washing
dishes, making their own beds, and cleaning the bathroom. Those who didn’t engage in one or
more of these activities indicated they would like to do so in future. The individuals indicated
they did not do so currently because they did not know how to do specific chores, and parents
or staff believe it is unsafe for them to do these chores, tell them it takes them too long to do
them, do not have the time to supervise them, or are unwilling to teach them how to do these
chores.
Individuals with developmental disabilities indicated they currently engage in the
following physical exercises either at their place of residence of in community fitness centers:
stretching, playing Wii games, exercise bike, lifting weights, yoga and exercise bands. Those
who didn’t engage in one or more of these physical exercises indicated they would like to do so
in future. The main reasons some of the individuals do not currently engage in physical
exercises include not having access to exercise equipment, money to purchase the equipment,
and space in their room or residence. Furthermore, they lack knowledge regarding use of
specific equipment and caregiver supervision during physical exercise. Others indicated they
are not interested in physical exercise, do not like exercising, would rather watch TV, or are too
busy with other activities.
Less than a quarter of the individuals indicated they exercised at a community fitness
facility, where they typically used a treadmill, elliptical machine, stationary bicycle, or weights.
A few who did not use one or more of these physical exercise modalities indicated they would
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like to do so in future. Of the vast majority of the individuals who do not attend community
fitness centers, most indicated they are not interested, would rather watch TV, do not have the
money for membership fees, do not have access via local transportation, do not like to go
alone, or are just too tired from engaging in other activities.
About a quarter of the individuals engaged in physical activities in parks and other
community recreational facilities. They typically engage in swimming, dance, hiking (walking
trails), playing Frisbee, and boating. However, most engage in these activities only periodically.
Some who did not engage in physical activities in parks and other recreational facilities
indicated they would like to do so in future. Of those individuals who do not engage in physical
activities in parks and other recreational facilities, a small number indicated they do not know
how to use these facilities, lack public transport to reach these places, believe the activities are
not adapted for people with disabilities, feel that people stare at them, or do not have the right
clothing for engaging in specific activities. A larger number noted that they are not interested,
would much rather watch TV, or do not have the money for entry fees.
About three quarters of the individuals could correctly differentiate between healthy
and unhealthy food choices. However, when asked which foods they would choose to eat, only
about half of them would make healthy choices. About two-‐thirds of the individuals knew why
it is important for them to have healthy foods and what would happen if they ate a lot of
unhealthy foods. When asked questions in the context of what foods would help someone to
lose weight and maintain good health, about 80% of them differentiated between foods that
enabled weight loss and those that didn’t. Furthermore, almost 90% of them were able to state
what foods would enable someone to develop strong healthy bones and body. Finally when
asked how often should a person eat healthy foods, only about half of them said all the time
with the other half suggesting some of the time would be acceptable in maintaining good
health. These findings suggest the individuals with developmental disabilities have a fairly good
general idea about healthy foods, but there are critical gaps in their knowledge as well.
The majority of the individuals noted that their caregivers would shop for healthy foods
for them and, if not, it would be for budgetary reasons. About 80% of the individuals stated
their caregivers would cook healthy meals for them and, if not, it could be because they want
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him/her to eat what everyone else eats, they do not want to cook a special meal for just one
person, or they do not have the time to prepare special meals. Only about half of the
individuals indicated they could do their own shopping for healthy foods. Those who indicated
they could not, stated they did not know how to do grocery shopping, did not know what foods
to buy, did not like to go grocery shopping by themselves, do not have money to buy their own
food, or lacked public transportation to the grocery stores. About a third indicated they would
be keen to lean how to do their own grocery shopping.
Less than half of the individuals indicated they could cook for themselves. Those who
said they cannot cook for themselves stated they did not know how to cook, and their parents
or support staff told them that it was unsafe for them to cook, it takes them too long to prepare
a meal, it is easier for them (parents and support staff) to do the cooking and the food they
prepare is good for him/her, and that they should not be eating meals that are different from
what everyone else is eating. Just under a third indicated they would be keen to learn how to
cook.
In summary, individuals appear to have a reasonably good knowledge of the need to
stay healthy by engaging in physical activities and eating healthy meals. However, there are
several key gaps in the knowledge as well as a need not only to motivate more of them to
engage in physical activities, but also to learn to do their own grocery shopping and cooking
healthy meals.
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STUDY 3: Health and Wellness Entities
Method
Survey Methodology
A survey was developed for health and wellness entities that offer different types of physical
activities (e.g., fitness centers/gyms, dance studios, yoga studios, martial arts/karate studios).
Many questions require participants to know whether individuals with developmental
disabilities use their facilities and if so, what types of disabilities or challenging behaviors they
have, and if they need any special accommodations. This information is nearly impossible to
track in public facilities. Although community parks and recreation departments offer physical
activities, we were unable to locate any official from these facilities who could provide this kind
of information.
In order to obtain as many health and wellness entities as possible, an internet search
was conducted on several websites such as www.yellowpages.com and www.google.com to
identify entities in Duval, Broward, Bradford, and Okeechobee counties. Four lists were created
(one per county) that included all entities found on the Internet, sorted by entity type. A total
of 53, 117, 7, and 5 entities (N = 182) were identified for Duval, Broward, Bradford, and
Okeechobee counties, respectively. A sample was obtained for each county by randomly
selecting entities to contact from each available type. Researchers attempted to make
telephone contact with owners or managers of 29, 32, 6, and 5 entities in Duval, Broward,
Bradford, and Okeechobee counties, respectively, to briefly describe the study’s purpose and
invite them to participate. Of the 72 entities researchers attempted to contact, 10 (34%), 10
(31%), 1 (17%), and 4 (80%) (n = 25) completed the survey from Duval, Broward, Bradford, and
Okeechobee counties, respectively, with an overall response rate of 35%. Verbal consent was
obtained before any survey questions were asked. All surveys were completed via telephone
interviews, and responses were recorded by hand. Names of entities who participated were
made available only to the researchers. Data were aggregated and analyzed using descriptive
statistics and qualitative methodologies. There was no financial incentive to participate in the
survey, but the health and wellness entities could request a copy of the final report. For the
other 47 entities researchers attempted to contact, survey incompletion was due to several
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reasons such as the published phone number was disconnected or not in service, the
manager/owner was not available, no one answered the phone, no one returned messages left,
or the entity declined to participate.
Survey Development
We reviewed current survey methodology as well as current literature on physical activity,
health and nutrition in individuals with developmental disabilities. The literature review and the
authors’ collective experience in the field of developmental disabilities revealed that no existing
tools met the needs of the current survey. Thus, we developed a new survey for health and
wellness entities that focused on facilitators and barriers these entities perceive or encounter in
supporting individuals with developmental disabilities. In addition, we wanted to know what
these entities need, if anything, to support individuals with developmental disabilities to
effectively pursue health and wellness activities. We also were interested in the number of
adult individuals with developmental disabilities who have used their facility in the past month.
The entities were clearly informed the survey was not designed to judge the services they
provide or the accommodations they make, or are willing or able to make to support individuals
with developmental disabilities to use their facilities.
Survey Respondents
Of the 25 health and wellness entities who participated in the study, 10 (40%) were from Duval
County, 10 (40%) were from Broward County, 4 (16%) were from Okeechobee County, and 1
(4%) was from Bradford County. In addition, 17 (68%) were fitness centers/gyms, 3 (12%) were
karate/martial arts studios, 3 (12%) were dance studios, and 2 (8%) were yoga studios. All 25
entities completed the survey via telephone interview.
Results
Twenty of the 25 (80%) respondents from health and wellness entities correctly stated the
meaning of the term “developmental disabilities” as evidenced by citing several examples
covered by the term. In terms of counties, 7 of 10 from Duval County, 10 of 10 from Broward
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County, 1 of 1 from Bradford County, and 2 of 4 respondents from Okeechobee County
understood the meaning of the term developmental disabilities. Regardless of their
understanding of developmental disabilities, the definition of the term was explained to all 25
respondents prior to them being asked about the use of their facilities by individuals with
developmental disabilities.
As shown in Table 43, 7 of 10 health and wellness entities in each urban county (Duval
and Broward) indicated that individuals with developmental disabilities used their facilities,
with none using such facilities in either of the two rural counties (Bradford and Okeechobee).
The mean number of individuals using these facilities in the month prior to the survey was far
higher in Duval County (n = 14) than in Broward County (n = 4).
Table 43. Utilization of health and wellness entities by individuals with developmental disabilities in the month prior to the survey. N = total number in the sample.
Urban Rural
Duval (N = 10)
Broward (N =10)
Bradford (N = 1)
Okeechobee (N = 4)
# Health & wellness entities accessed by individuals with DD
7 7 0 0
# Individuals accessed health & wellness entities prior month
1 to 40
3 to 6
0 0
Table 44 lists the number of individuals with one or more disabilities who used health
and wellness facilities in the two urban counties, the number of those who needed special
accommodations, and the nature of the accommodations made by type of disability.
Table 44. Special accommodations provided by health and wellness entities for specific impairments and challenging behavior
County Variable Physical Visual Hearing Behavior Special Accommodations
Duval Number with disability 4 4 3 4 Physical: additional supervision, modified program
Number needing accommodations
2 2 2 4
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Visual: additional supervision Hearing: staff learned sign language, modified program Behavior: additional supervision, behavior management, modified environment, educated gym members on participants needs
Broward Number with disability 3 4 3 3 Physical: additional supervision, access to service elevator Visual: additional supervision, modified program, transportation Hearing: modified communication Behavior: behavior management, staff education
Number needing accommodations
2 3 1 2
Table 45 lists the perceived need for special accommodations that health and wellness
entities will need to make to enable individuals with specific impairments and challenging
behavior to use their facilities.
Table 45. Perceived need for special accommodations that health and wellness entities will need to make to enable individuals with specific impairments and challenging behavior to use their facilities
County Variable Physical Visual Hearing Behavior Special Accommodations
Duval Number of health and wellness entities accessed by individuals
3 3 4 3 Physical: none needed, additional supervision, modified program,
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without a specific disability or challenging behavior
restrict attendance to specific times, certification of caregiver Visual: none needed, modified program, additional supervision Hearing: none needed, staff will need to learn sign language, additional supervision, modified program, restrict attendance to specific times Behavior: none needed, modified program, additional supervision, behavior management, restrict attendance to specific times, staff training in behavior management
Number of health and wellness entities not accessed by individuals with developmental disabilities
3 3 3 3
Broward Number of health and wellness entities accessed by individuals without a specific disability or challenging behavior
4 3 4 4 Physical: none needed, unable to accommodate, modified program Visual: none needed, additional supervision, add Braille to equipment Hearing: none needed Behavior: none needed, additional supervision, modified program, unable to accommodate
Number of health and wellness entities not accessed by individuals with developmental disabilities
3 3 3 3
Bradford Number of health and wellness entities accessed by individuals without a specific disability or challenging
na na na na Physical: none needed Visual: additional supervision
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behavior Hearing: additional supervision Behavior: educate gym members on participants needs, restrict attendance to specific times
Number of health and wellness entities not accessed by individuals with developmental disabilities
1 1 1 1
Okeechobee
Number of health and wellness entities accessed by individuals without a specific disability or challenging behavior
na na na na Physical: none needed, make parking lot wheel chair accessible, modified program Visual: none needed, unable to accommodate Hearing: none needed Behavior: additional supervision, behavior management, modified program, restrict attendance to specific times, unable to accommodate
Number of health and wellness entities not accessed by individuals with developmental disabilities
4 4 4 4
Table 46 lists the presumed reasons why individuals with developmental disabilities are
not using health and wellness facilities by county. It also lists the suggestions the respondents
from the health and wellness entities made with regard to how the facilities may overcome
some of the presumed barriers.
Table 46. Presumed barriers and recommendations for utilization of health and wellness facilities
County Perceived Barriers Recommendations Duval Facility doesn’t have any staff
to train these individuals (1)* Lack of community knowledge/awareness that a lot of facilities are willing to
Explore having the city bus/shuttle provide transportation to the facility (1)* Work with caregivers/guardians to sign release forms (one facility reported
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work with these individuals (2) Money/funding issue (e.g., private club that doesn’t take insurance; State of FL won’t release the individual’s funds or allocate their funds to pay for monthly fees) (2) These individuals may not feel they belong in these facilities; may feel intimidated or scared or lack confidence in ability (to use equipment, do yoga poses, etc.) (3) Other members afraid or not comfortable with these individuals working out at these facilities (1) Transportation issue: Family/caregivers may not be able to bring them (1) Lack of commitment and supervision from caregivers (e.g., just leaves the individual with a trainer and goes off and does their own thing) (1)
having trainers who can work with most disabilities as long as a caregiver/guardian is with them) (1) Increase marketing efforts to specifically target DD facilities/community and enhance awareness (specific ideas from one facility: lunch & learn, free tours at the facility, daily outings to get new business, volunteer opportunities, etc.) (3)
Broward “Lack of community awareness that facility exists (just opened 1 ½ weeks ago)” (1) “I don’t have a clue” (1) “Our gym is more hard-‐core rather than family-‐oriented”; has mostly competitors as members so those with DD may feel intimidated (1)
Collaborate with medical community to get the word out (1) Advertise (e.g., word of mouth; post fliers on bulletin board in studio) (1) “Probably nothing because I don’t think my facility is the best type of gym for those with mental disabilities” (1)
Bradford Most gyms in Starke not family friendly and don’t offer child care (1)
Engage in efforts to change the stereotype/image of gyms in general (people think gyms are filled with hard-‐
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Lack of community knowledge/awareness that some facilities are willing to work with these individuals (1) Individual may not want to workout at facility; may feel embarrassed (1)
bodied, stuck-‐up members but their gym in Starke only has a few members in good shape and everyone is very friendly and looks out for each other) (1)
Okeechobee “No idea” except for lack of trainers/staff to help if needed (members at this facility are expected to be able to workout independently) (1) Lack of transportation (1) Lack of community knowledge/awareness (1) No adult with DD has ever expressed interest in joining (2) Doesn’t market her (dance) studio as a facility that serves those with DD because she is a sole owner and teacher with no education or training to work with this population; concerned with safety/liability issues (1) Caregivers may not think going to the gym is good for these individuals or that it is important (1) Caregivers may be too busy or lazy to bring them to the gym (1)
“No idea because I never really thought about it” (1) Explore ways to advertise -‐ “I don’t know who to go through to advertise to right people”; “I just need to get them into the door (e.g., distribute fliers offering free 3-‐day or week long passes); I’m confident I could convince them to join”. (2) Hire someone who is trained to work with the DD population (if enough adults with DD express interest in joining her dance studio) (1)
*Indicates number of responses by county
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Discussion
The results of our survey showed that the majority of respondents from the health and
wellness entities know what the term developmental disabilities means. The health and
wellness entities reported serving individuals with developmental disabilities only in the two
urban counties (Broward and Duval), but not in the two rural counties (Okeechobee and
Bradford). As noted in the earlier studies with caregivers and individuals, public transportation
and membership cost have been the two key barriers for individuals not using the health and
wellness facilities in rural counties.
In the urban counties, health and wellness facilities have made specific accommodations
for the small number of individuals who use their facilities. These included accommodations for
physical, visual and hearing disabilities, and for those individuals who exhibit challenging
behaviors. Furthermore, each of the health and wellness facilities suggested a number of
possible reasons why individuals with developmental disabilities may not be using their
facilities as much as the entities would like, and also advanced recommendations with regards
to how these possible barriers could be overcome. It would be salutary for community agencies
serving individuals with developmental disabilities to review these perceived barriers and
suggested recommendations for overcoming the barriers in an effort to increase physical
activity in this population.
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STUDY 4: Community Forums
Method
Community Forum Methodology
This approach to needs assessment involves holding a meeting at which concerned members of
the community can freely express their views and needs. Participants may include all
stakeholders, including individuals with developmental disabilities, parents, caregivers, and
other support staff such as community support coordinators. Well-‐developed community
forums offer the participants a nonjudgmental venue to express their views on a specific topic.
It provides the participants a forum where they can consider issues in ways they may have
overlooked and be collectively engaged in identifying various barriers and facilitators to
individuals with developmental disabilities engaging in health and wellness activities at their
place of residence and in the community generally.
Participants
Participants were recruited from two urban (Broward, Duval) and two rural (Okeechobee,
Bradford) counties, including individuals with developmental disabilities, parents, residential
staff, staff at day centers, support coordinators, and staff from health entities (e.g., YMCA,
YWCA, gyms, health and wellness centers, parks and recreation). Initial approaches to possible
participants were made via e-‐mail invitations to administrators of agencies involved in the care
and provision of services to individuals with developmental disabilities, support coordinators,
and health and wellness agencies, and by phone calls to parents and providers. Follow-‐up
invitations were sent twice before the community forums were held.
We held three community forums, one in Fort Lauderdale and two in Jacksonville,
Florida. The forums were held in the administration building of three centrally located
community provider agencies. Of the 96 possible participants who accepted an invitation to
attend, 71 (74%) attended one of the three forums: 41 individuals with developmental
disabilities, 11 parents, 16 support staff and 3 support coordinators. The majority of the
participants were from the two urban counties (n = 61), but a representative sample from the
two rural counties (n=10) also participated. No participants from health and wellness agencies
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attended any of the forums.
Procedure
A doctoral-‐level clinical psychologist, who had extensive experience in working with individuals
with developmental disabilities, as well as with parents and support staff, facilitated the three
community forums. An on-‐site research team recorded the discussions, questions and
comments during the three community forums. At the beginning of each community forum
session, the forum facilitator explained the purpose of the forum and confirmed that each
participant had provided consent using an informed consent document approved by the Florida
Developmental Disabilities Council, Inc.
The participants were told that the aim of the community forum was to discuss from
their perspectives the needs of individuals with developmental disabilities and their caregivers
as these needs relate to pursuing health and wellness activities in their communities.
Specifically, they were to address the following issues:
1. How important are health and wellness activities for individuals with developmental
disabilities?
2. With regard to the individuals you provide care for, how interested are the individuals in
health and wellness activities?
3. What health and wellness activities are available in your setting (group home,
independent living, work, etc.)?
4. What health and wellness entities are available in your community (e.g., gym, yoga
studio, parks and recreation, etc.)?
5. What barriers do you perceive or encounter in facilitating health and wellness activities
for the individuals you care for?
Data Analysis
The three community forums provided very similar perspectives on issues related to the health
and wellness activities of individuals with developmental disabilities. Given the small sample
sizes at each of the forums and the similarity of their perspectives regardless of their
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geographic location, the data were pooled for a narrative qualitative analysis. Four doctoral-‐
level scribes took audio and written notes, and the data were analyzed using a note-‐based
approach according to the procedures described by Kruger (1998). The written notes were
checked against the audio notes for fidelity of transcription (100% accuracy). Specific facilitators
and barriers were identified through the note analysis, and the research staff were responsible
for defining these two groups of themes. The community forum notes were then content
analyzed by the research staff according to the themes identified through note analysis. A
portion of the content analyses was undertaken by two researcher staff to assess inter-‐rater
agreement, which averaged 98%.
Results
The views of the individuals with developmental disabilities, parents, and support staff were
very similar in most instances suggesting a confluence of views. Indeed, the views expressed
during the community forums matched those expressed by caregivers and individuals with
developmental disabilities in the survey studies.
How important are health and wellness activities for individuals with developmental
disabilities?
Without exception, all participants at each of the three focus groups agreed that it is very
important for individuals with developmental disabilities to engage in health and wellness
activities. Parents, support staff, and support coordinators were clearly aware of the increasing
need to (a) educate the individuals in their care to exercise and eat healthy foods, (b) provide
opportunities for them to engage in health and wellness activities, and (c) model appropriate
health and wellness activities as an example of what the individuals could do. The individuals
indicated a good knowledge of their health and wellness needs, but also indicated a disparity
between what they knew and what they practiced. The clearest example of this related to
healthy eating. For example, several individuals stated that they knew which foods are
unhealthy, but they liked to eat them anyway because they are tasty and cheap. Furthermore,
when given a choice of restaurants, they indicated their choice would be for fast food chains
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that had plenty of food choices, albeit with a preponderance of unhealthy options, and large
portions.
With regard to the individuals you provide care for, how interested are the individuals in
health and wellness activities?
Parents indicated their children were only occasionally motivated to engage in health and
wellness activities. Some indicated that their children accompanied them to community health
entities and used the available fitness equipment. Others indicated that because of age, they
did not engage much in physical activities, and their children were not motivated to engage in
physical exercises by themselves. Support staff noted that some individuals in their care were
very motivated to engage in health and wellness activities. For example, those who participated
in Special Olympics were the most motivated to eat healthy foods and to exercise on a regular
basis. Others noted that group home staff could play an important role in enhancing the
motivation of the individuals to engage in health and wellness activities. For example, staff at
group homes that engaged in physical activities (e.g., walking, exercising, gardening),
encouraged and rewarded individuals in their care who engaged in these activities. Some
individuals expressed an interest in physical exercises, but noted competing activities that
provided more immediate pleasures (e.g., watching TV, listening to music on their iPods).
What health and wellness activities are available in your setting?
The responses were mixed. A few parents indicated they had some exercise equipment at
home (e.g., treadmill, stationary bicycle) while most had none. Others did not engage in
physical exercise and did not encourage their children to do so either. Support staff noted that
some group homes had some exercise equipment (e.g., treadmill, stationary bicycles, elliptical
machines, medicine balls), but these were usually in bad repair as they were used and misused
by the individuals.
A common sentiment was the lack of space in group homes for storing equipment, lack
of staff for supervising individuals while they used the exercise equipment, lack of funding for
updating or repairing existing equipment, and a lack of staff knowledge in physical fitness
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activities. Some individuals indicated they had purchased specific physical exercise equipment
(e.g., Wii Games, exercise bands) or exercise CDs (e.g., yoga, physical exercise routines by
specific trainers) because they wanted to use them at home. Some indicated they would
engage in physical exercise if they had access to suitable equipment at their residence, but that
they did not have the money to purchase equipment for their preferred exercises. Others
indicated they would much rather watch TV or engage in activities not involving physical
exercise.
What health and wellness entities are available in your community?
Participants from the urban counties stated good availability of health and wellness entities in
their communities, including health and wellness centers, yoga studios, and fitness studios, as
well as numerous parks and recreation facilities. Parents reported they infrequently used parks
and recreation facilities for various reasons, with the main one being the lack of need. They
typically used parks for taking long walks and they could do this in their own neighborhoods.
They did not use recreation facilities, because others using the facilities did not typically invite
their children to join them in their games.
Parents and support staff also noted that accessibility is an issue with some of the
community facilities, such as lack of wheelchair accessible curb cuts, inaccessible access routes,
facility desks being too high for those using wheelchairs to easily communicate with the desk
attendant, lack of adequate space between different equipment for wheelchair accessibility,
and the lack of elevators. Others mentioned lack of accessibility to swimming pools, hot tubs
and saunas because the doors are typically too narrow for wheelchairs, and almost always a
lack of access to hot tubs and whirlpools. Some individuals mentioned safety issues, such as
slippery floors and the absence or height of handrails on stairs.
Support staff indicated they did not use much of the community facilities because of the
cost of membership, the reluctance of the health entities to cater to the specific needs of the
individuals with developmental disabilities, lack of appropriate family changing rooms which
would make it easier for parents and staff to provide assistance to the individuals with
undressing and dressing with some privacy, door thresholds that hinder wheelchair access, and
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transportation difficulties. Group home staff indicated a shortage of support staff as a critical
reason for not using community-‐based facilities, as the health entities invariably requested 1:1
staffing of individuals with physical disabilities and/or challenging behaviors. Parents and
support staff from rural areas noted that while community-‐based facilities were available,
transportation was a critical issue and the lack of staff knowledge in providing services to
individuals with developmental disabilities.
What barriers do you perceive or encounter in facilitating health and wellness activities for
the individuals you care for?
Participants noted a shrinking of funds for the care provided to the individuals. Parents and
support staff noted that the cost of food, especially healthy food, is continually increasing, but
reimbursements for care has either remained steady or decreased. Thus, parents and support
staff have to be more judicious in their shopping, and most have made several adjustments. For
example, when dining out, many parents and support staff take individuals to fast food chains
that serve fried foods the individuals like, but know is not very healthy. However, the food is
relatively inexpensive, comes in large quantities, and is cheaper than cooking healthy meals at
home.
Parents and support staff also noted that the individuals do not have as much money as
previously, and many are neither in supported employment nor have a regular job. Those that
have jobs, work only for a few hours. This means that the individuals often choose not to enroll
as members of public health and wellness facilities that do not provide discounted
memberships. Individuals noted that they do not have access to quality exercise equipment at
their place of residence, because they either do not have the money to purchase the
equipment themselves, or the group home provider has not made such equipment available to
them. When exercise equipment is available, they are often broken and it takes a long time to
have them repaired. This dramatically reduces the individuals’ motivation to restart an exercise
routine.
Some parents and support staff noted that the downturn in economy has forced them
to rethink their buying patterns with regard to food and other needs of individuals with
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developmental disabilities in their care. They noted that while the money is tight, they can
actually make healthier choices within their current budget. For example, some noted that
instead of purchasing soda pop for the individuals, they now encourage them to drink more
water, often supplemented with commercially available flavorings. Instead of eating fried
foods, they now encourage the individuals to eat broiled and steamed food, without adding
cost. They encourage the individuals to learn to make healthy choices when they are eating out,
and to eat smaller portions, while exercising more. Indeed, some have encouraged individuals
in their care to join Special Olympics as an added motivation to eat healthy food and to exercise
more. Where they do not have access to adapted exercise equipment, they encourage the
individuals to engage in daily walking, particularly paired with walking pets.
Some individuals mentioned how much they enjoyed Special Olympics not only because
of the health benefits, but also the social aspects of meeting other individuals and forming
friendships. All of them said they aspired to win medals at the Special Olympics, and it was clear
they enjoyed a sense of achievement that Special Olympics provides them. Some mentioned
that being in the Special Olympics was fun and did not cost them much. Some individuals
mentioned walking their dogs as a form of exercise, although others noted that they did not
have access to pets, but would be interested in adopting one. Some mentioned they utilized the
gym facilities at their place of employment during their lunch hours, or as a part of the work
program.
In summary, parents, support staff and support coordinators, and the individuals
themselves appeared to have fairly good knowledge of health and wellness activities, the
barriers to engaging in these activities, and the current facilitators to enhancing their health
and wellness.
Discussion
The data from the community forums on the health and wellness needs of individuals with
developmental disabilities showed a confluence of views of caregivers, individuals and health
and wellness entities. A remarkable similarity of views emerged, regardless of geographic
location, urban versus rural county, size of the county, and whether they were parents, support
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staff, administrators, or the individuals themselves. Furthermore, the information gleaned from
the community forums mirror those obtained from the caregiver (Study 1), individuals (Study 2)
and health and wellness entities surveys (Study 3). This suggests the findings are fairly general
and not specific to the respondents or geographical areas included in the surveys.
RECOMMENDATIONS
The following recommendations arise from these studies:
1. Funding. Individuals, parents, and support staff are quite knowledgeable about health and
wellness issues as they pertain to individuals with developmental disabilities. However,
increasing health and wellness in this population is severely hindered by current economic
realities. Food prices are rising, especially of what is currently deemed healthy foods, the
cost of buying physical exercise equipment for residential use is prohibitive, and the cost of
membership in health and wellness entities is often beyond the means of individuals with
developmental disabilities and their parents or support staff.
Some form of additional economic support for this population is warranted because,
in its absence, the cost of medical care due to obesity and its consequences will be far more
costly. Increased opportunity for individuals with developmental disabilities to work, either
in supported or regular employment, supplemented by Medicaid Waiver funding is a good
option. Increased funding for parents and providers, earmarked for health and wellness
activities, is an additional option.
2. Knowledge. A majority of individuals with developmental disabilities, as well as their
parents and support staff, have very good knowledge of health issues, including nutrition
and physical exercise. However, two considerations are in order. First, there still are a
substantial number of individuals who have little appreciation of the medical risks of obesity
and its consequences due to eating unhealthy foods and a sedentary lifestyle. Second, the
field of nutrition is rapidly changing and, as our knowledge increases, this information needs
to be downstreamed to individuals, and their parents and support staff.
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This can be achieved in a number of ways. First, the FDDC can have a web page that
provides updated information on health and wellness. Second, provider agencies can
develop and provide booklets written at the cognitive level of the individuals with relevant
practical health and wellness information to the individuals. Third, booklets with higher-‐
level health and wellness information, as well as information on local community resources,
can be provided to inform parents and support staff. Fourth, health and wellness
information and activities can be included in the individualized support plans of individuals
with developmental disabilities. Fifth, parents and support staff should be encouraged to
take the individuals in their care to libraries and local health food stores for educational
visits, and pair such visits with shopping for their meals so that these visits have functional
outcomes.
3. Access to Equipment. Individuals, and their parents and support staff, repeatedly noted the
lack of access to physical exercise equipment. The individuals noted that only limited
equipment is available in group homes and, most of the time, the equipment has been
poorly maintained. Furthermore, access to equipment in community health and wellness
centers is limited for individuals with developmental disabilities who use wheelchairs
because there is often not enough space between equipment for their wheelchairs. In
addition, there is lack of adaptive equipment for those individuals who cannot use the
standard equipment either at their place of residence or in community health and wellness
centers.
Group homes need to provide and maintain physical exercise equipment in good
order for individuals to use at their place of residence. Both group homes and community
health and wellness centers need to provide more space between equipment, and include
equipment that are or can be adapted to the needs of those individuals who may also have
physical disabilities. For example, traditional physical exercise equipment can be enhanced
by adding Velcro straps that may better enable individuals with physical disabilities to grip
the equipment, and increase strength and upper-‐body aerobic exercise equipment for those
using wheel chairs. Parents and group home providers should consider non-‐traditional
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physical exercise equipment for aerobic fitness. For example, Wii games may be a suitable,
inexpensive alternative to treadmill and elliptical machines.
4. Environmental Access. Individuals with developmental disabilities who use a wheel chair
noted that counters in community health and wellness centers are beyond their reach,
making communication with center staff a challenge. In addition, there are natural barriers
in parks and recreation facilities, such as lack of curb cuts and inaccessible routes. In built
areas, doorways are often too narrow for wheelchair access, lack of elevators, lack of
adequate or easy access to swimming pools, hot tubs and saunas. Furthermore, individuals
with physical disabilities reported other environmental shortcomings, such as slippery
floors, absence of handrails or handrails on stairs that are too high or too thick to hold on
to.
Most of the environmental access issues are violations of Title III of the Americans
with Disabilities Act (ADA, US Department of Justice, 2010), which establishes public and
commercial accessibility standards for people with disabilities. Enforcement of ADA
guidelines should be enforced where deficiencies are evidenced.
5. Shopping and Cooking. Some individuals with developmental disabilities noted that they do
not have much of a say in shopping and cooking at their group homes. The shopping is done
in bulk by the support staff, and the meals cooked by the staff. In other cases, some meals
were centrally supplied to all group homes owned by a provider. Staff explained that it took
too much time and effort for them to teach or supervise the individuals to shop and cook.
This is viewed as a matter of efficiency than a lack of desire to teach the individuals.
Some individuals noted that they did not feel motivated to cook or learn to cook
because they saw cooking as a staff task. Their typical response was, “Why should I cook
when someone else is paid to do it?” Community providers and support staff should
emphasize to the individuals that self-‐sufficiency is a key aspect of living in the community,
and they should add shopping and cooking to each individual’s Individualized Support Plan.
Furthermore, parents and support staff should be educated on the essential elements of
88
self-‐determination so that they can include these concepts in their daily care and treatment
of their children and individuals with developmental disabilities in their care.
Others indicated that they would like to learn to cook, but the staff had safety
concerns or believed the individuals could not be taught to shop and cook. Indeed, the issue
of safety was a finding in the caregiver survey, suggesting that parents and support staff had
misgivings about allowing individuals in the kitchen to cook for themselves. While this is a
legitimate concern, safety can only be ensured by teaching the individuals how to correctly
operate the appliances and to cook safely rather than not allowing them to cook at all.
Furthermore, there is ample literature showing that individuals with developmental
disabilities can do their own shopping and cooking. Indeed, research shows that even
individuals who function at the profound level of developmental disabilities can be taught
to use a cookbook (Hopman & Singh, 1986) and independently prepare meals (Singh,
Oswald, Ellis, & Singh, 1995). Parents and staff should be taught how to provide shopping
and cooking instructions so that they feel confident in teaching their children and
individuals with developmental disabilities in their care to shop and cook independently.
6. Transportation. Individuals, parents and support staff mentioned the lack of public
transportation to health and wellness entities, as well as to shopping centers close to the
individuals’ residence. Public transportation is slowly fading from the lifestyle of many
American communities, especially in the ever-‐expanding planned housing developments.
However, the need for public transportation is acute for some populations, such as the
elderly, and individuals who live in poverty, or have physical or developmental disabilities.
Local governments should be encouraged to consider the needs of these populations, and
enhance low-‐cost public transportation in their local communities.
7. Enhanced Awareness. Several health and wellness entities indicated lack of awareness as a
major barrier to individuals with developmental disabilities attending their facilities.
Managers and owners expressed interest in increasing efforts to market their services to
these individuals and to address inaccurate stereotypes, but did not know how best to do
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this. This is an area that community agencies, such as FDDC and ARC, may be able to
provide reference materials and direct instruction to support health and wellness entities in
their efforts to increase their knowledge of what physical activities individuals with
developmental disabilities are capable of and how to help them engage in these activities
given their physical and cognitive limitations.
8. Staffing Needs at Health and Wellness Entities. Several health and wellness entities
indicated they would like to serve more individuals with developmental disabilities at their
facilities. However, they expressed concern over not having enough staff that are
adequately trained to work with these individuals to help ensure safety. These entities often
request parents and residential providers to accompany their children or individuals in their
care to their facilities. Provider agencies should encourage their staff not only to accompany
the individuals in their care to health and wellness facilities, but also engage in the same
physical exercises as the individuals, thus demonstrating to the heath and wellness staff
how to provide safe and effective training to these individuals. An advantage of this process
would be the added motivation for the individuals to engage in physical exercise.
Furthermore, community agencies should provide focused training to the staff at health and
wellness entities in safe and effective ways of training individuals with developmental
disabilities in different physical exercises.
In summary, there are a number of ways community agencies can increase health and wellness
activities of individuals with developmental disabilities.
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ACKNOWLEDGMENTS
We extend our gratitude to a large group of people for their tremendous contributions to the
development of the assessment tools, planning and execution of the surveys, data gathering
and analysis, and development of the final report.
Holly Hohmeister, our project director at FDDC, provided advice, guidance and gentle
reminders to keep us on track with the project timelines. She was also instrumental in the
development of the surveys and their translation into Spanish. Alan Weissman helped us with
programming the surveys in SurveyMonkey.com and in making revisions as we developed the
project. Rachel Myers was our collaborator from the start and provided valuable input at every
stage of the project, from the development of the survey tools to data analysis and preparation
of the report. Carol Lingenfelter was invaluable in using her extensive knowledge of
developmental disability services in Florida and her wide social network to help us gather data
via the surveys and community forums. We may have never achieved the sample size without
her assistance. David Lanier was an outstanding facilitator for the three community forums.
The following individuals assisted in setting up the face-‐to-‐face interviews, telephone
interviews, and community forums, as well as by encouraging parents, support staff and
individuals to complete the surveys online: Martha Martinez (Area Administrator, Area 10, Ft
Lauderdale, FL 33301); Pamela Romack (Medicaid Waiver Supervisor, APD Area 10, Ft
Lauderdale FL 33301); Jim Giblin (Director, Advocates in Motion, Deerfield Beach, FL 33442);
Marsha Bober (Support Coordinator, Advocates in Motion, Deerfield Beach, FL 33442); Debbie
Kahn (Director, Advocates for Opportunity, Plantation, FL 33323); Jim Smith, Area
Administrator, and Janet Snow (DCF, Gainsville, FL 32609); Jerry Driscoll, Area Administrator
and Sherry Ruszkoski (ARC Bradford County, West Palm Beach, FL 33401); William Flood (May
Institute, Orange Park, FL 32073), Connie Wadsworth (Ft Lauderdale, FL 33301); Randall
Duncan (Director, Pine Castle, Jacksonville, FL 32207); Sarah Schofield (Residential Supervisor
Pine Castle, Jacksonville, FL 32207); Charlotte Temple (Director of Advocacy, Jacksonville, FL
32209); Ami Caswell (ARC Jacksonville, Jacksonville, FL 32209); Jodi Ellis (ARC Broward, Sunrise,
FL 33351); Ellen Garrett (Director of Therapy Services, ARC Broward, Sunrise, FL 33351); Lorena
Fultcher (APD Central Office, Tallahassee, FL), and Tracey Seawright (Tandem, Davie, FL 33324).
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The following Advisory Board Members provided us with wise counsel: Wendy Bellack,
Aaron Coleman, Sandra Coleman, Patricia Fonseca, Holly Hohmeister, Monica Jackman, Sue
Kabot, Ramasamy Manikam, and Cecilia Rokusek.
We would like to thank the individuals with developmental disabilities, and their parents
and support staff who completed the surveys, sat through long interviews with endless
patience, and cheerfully gave us the information we needed. We thank the staff at ARC
Broward, ARC Jacksonville and Pine Castle for helping us with the Community Forums and
interviews. Finally, we thank the staff at the health and wellness entities who consented to be
interviewed and provided us with information on their services. All of you have deepened our
knowledge of the health and wellness needs of individuals with developmental disabilities.