FDDC Report on Needs Assessment · Health!and!Wellness!Needs!of!!...

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


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


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


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


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.

43

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



44


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


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

49

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



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



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)


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


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)


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


27 87.1 39 90.7 3 100 6 100


21 67.7 29 67.4 3 100 6 100


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


20 64.5 35 81.4 2 66.7 4 66.7


17 54.8 26 60.5 2 66.7 6 100


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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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).


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).


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




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


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


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


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

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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.

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