2013 Indiana Disability Poll
An annual assessment of issues important to people with disabilities in Indiana
2013 Disability Poll
A Focus on Health Issues
Executive Summary
Matt Norris
Center for Planning and Policy Studies
Indiana Institute on Disability and Community
August 2013
This project is a collaborative effort of the Indiana Governor's Council for People
with Disabilities, the Indiana Institute on Disability and Community, and
Executive Summary
Indiana Disability Poll
The Indiana Disability Poll is an annual collaborative effort of the Indiana Governor’s Council for People with Disabilities, the Indiana Institute on Disability and Community, and Indiana Protection and Advocacy Services. The Poll surveys Hoosiers with disabilities on issues related to current state and national policies and directions to better inform the partners, and local and state policy makers.
2013 Indiana Disability Poll: Focus on Health Issues
The 2013 Disability Poll (“Disability Poll”) focused on health-related questions posed to Hoosiers with disabilities, family members and advocates, and interested community members. Many of the questions were derived from the Behavioral Risk Factor Surveillance System1 survey developed by the Centers for Disease Control and Prevention (CDC)2. While the State of Indiana does participate in the ongoing data collection conducted through the BRFSS3, the annual disability poll presented an opportunity to directly solicit voluntary responses from people with disabilities, families, and others.
The Disability Poll was available from December 2012 to June 2013. In December 2012, the Institute and Council hosted a kiosk survey area at the 2012 Conference for People with Disabilities where staff from the Institute assisted conference attendees in completing the survey. Throughout Spring 2013, periodic announcements were distributed through various electronic lists. The survey was made available through the Institute’s “Polling Place” website where prospective respondents were provided with the study information sheet approved by the Indiana University research office. Print copes and alternative formats were provided when requested.
About Executive Summary and Full Report
In addition to the Executive Summary, a full report is provided as well. As most of the questions were voluntary, the percentages in the Executive Summary and Full Report are based on the number of responses to a particular question, not the full respondent pool. Some of the questions in the survey allowed participants to choose more than one response. (In these cases, summing the various response options would total more than the actual number of respondents). To make the information more useful, the Institute staff categorized many of the open-ended responses to make for easier reading.
About Respondents to the 2013 Indiana Disability Poll
The survey respondents for the 2013 Indiana Disability Poll included 256 respondents with disabilities, and 132
respondents without a disability. Between the two respondent groups, 67 Indiana counties were represented.
Respondents with a Disability
The 256 respondents with a disability were either an individual with a disability (141), or a proxy for an individual with a disability, such as a parent, family member, or guardian (100), or a disability professional filling out the survey on behalf of person with a disability (15).
Developmental Disability and Reported Disability
When asked when their disability began, 185 respondents (almost 75% of respondents with a disability) reported that their disability began before their 22nd birthday. Respondents were also asked to identify their “primary” disability, and of those who responded, and while all the disabilities on the list presented were selected, the top
1
The Behavioral Risk Factor Surveillance System (BRFSS) is an “on-going telephone health survey system” coordinated by the Center for Disease Control and Prevention (CDC) in all fifty states (and territories). For more information about the BRFSS, visit the CDC’s website: http://www.cdc.gov/brfss/.
2
Centers for Disease Control and Prevention (CDC). Behavioral Risk Factor Surveillance System Survey Questionnaire. Atlanta, Georgia: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, [2010, 2011].
3
four disabilities included: Physical Disability/Spinal Cord Injury, Cerebral Palsy, “Other” disability, and Intellectual disability.
Gender, Race, Education, and Income
For the 2013 Indiana Disability Poll, the respondents with a disability group could identify their gender, race, ethnicity, education attainment, and income.
- Of the 252 respondents who elected to identify their gender, 50% identified as female, 50% as male. - Of the 253 respondents who responded to whether they were “Hispanic or Latino,” only 7 identified as
being Hispanic/Latino.
- Of the 253 respondents who elected to identify their race, 89% identified as “White.”
- Of the 249 respondents who elected to identify their highest educational grade completion, 78 (31%) had completed 4 or more years of college, 67 (27%) had completed grade 12 or GED, and 35 (14%) had completed some college.
- Of the 251 respondents who answered the income query, close to half (47%) reported a 2011 household income of $30,000 or less. The most frequently reported income was $15,000 or less (27%).
Place of Residence and Household
When respondents with a disability were asked to identify where they live, close to half (45%) selected “town or small city.” The “large city” choice was the next most selected at 33%. Twenty-two percent (22%) identified as being from rural area or small town. Sixty of of Indiana’s 92 counties were represented by at least one respondent with disability. Some of the counties with 10 or more respondents included: Marion County (41), Monroe County (20), Allen County (17), Hamilton County (14), Elkhart County (11), and Wayne County (10).
When asked who lives in their household with them, thirty-six percent (36%) live with their parents, 24% with the spouse or partner, 18% with no one else. Other choices included living with children (15%), other (15%), friends (7%), and group home (4%).
Respondents without a Disability
The 132 respondents without a disability included disability professionals (124) and others without a disability (8). This group was asked only a subset of the full survey. These respondents without a disability were asked to provide insights into barriers for people with disabilities in accessing health care and staying healthy while managing a chronic disease. Forty-two of Indiana’s 92 counties were represented by at least one respondent without a disability.
Health Status and Insurance
When asked to rate their health status, most respondents (39%) saw their health as “good,” followed by “very good” (24%), and “fair” (21%).
The majority of respondents (92%) said they had some type of health insurance (Medicare, Medicaid, or private health insurance). Respondents were then asked to identify what type of insurance coverage (respondents could choose all that applied): Medicaid (51%), Medicare / Supplemental (43%), Employer, either own or spouse’s (18%), or Employer, parent’s or family member’s (18%).
Health Care Access
Many respondents said they either had one person they thought of as their “personal doctor or health care provider” (49%). Forty-one percent (41%) said they had difficulty finding a health care provider who understood their disability, health condition, or impairment. Only 22% reported that there was a time in the past 12 months when they needed to see a doctor but could not because of cost. Seventy-eight percent (78%) have visited a doctor within the past year for a routine checkup.
Transportation
Respondents were asked how often transportation is a problem in getting health care, and while 73% reported that it was “rarely” or “not” a problem, twenty-five percent (25%) responded that it was “sometimes” and “often or always” a problem. Respondents who identified that transportation was “sometimes a problem” and “often or always a problem” in getting health care were asked to provide more information as to why. Some of the themes from their comments included:
- Relying on others such as family and others (working around work and others’ schedules) - Problems with public transportation if exists (unreliable), or lack of public transportation - Cost is an issue (cost of gas)
- No transportation (no dependable vehicle, medical transport too busy)
Other Barriers
Respondents were asked to identify just one additional barrier, other than cost, transportation, or health care provider understanding your disability, they frequently encountered in accessing health care. Some of the themes that emerged from the more than 140 comments submitted included:
- Finding Health Care Provider (specialists, experience treating patients with disabilities) - Accessibility Issues (Equipment, Facility)
- Finding Health Care Providers who take insurance plan (ex. Medicaid or Medicare) - Limited services due to insurance coverage
- Financial costs, even with insurance coverage
- Scheduling health care appointments (having time, scheduling around others - family, doctors, service providers)
- Disability-related issues may be barrier to overall health care (non-verbal, difficult to express concerns or complaints)
- Communication (difficulty in understanding communication from doctor, complex information and instructions)
- No insurance coverage - Distance and transportation - Fear and dislike of going to doctor
- Limited knowledge of health care system and options
Physical Accessibility in Health Care Facilities
When asked if they had any difficulty in “moving around” in the past 30 days, thirty-eight percent (38%)
acknowledged that they had moderate (23%), severe (11%), and extreme (4%) difficulty in moving around versus the 60% who reported “mild” and no difficulty. Respondents were asked if they experience any problems getting into the office of personal doctor or healthcare provider, and 84% replied that they did not.
The fifteen percent (15%) who did experience problems were asked to provide more information about what were the issues they experienced. Of the close to 35 comments submitted the themes that emerged included:
- Physical Barriers (doors, narrow doorways, no ramps, parking) - Transportation (getting to doctor’s office)
- Communication (difficulty in understanding, no interpreter)
Respondents were asked if they were ever told by their doctor or health care provider that the doctor was unable to do a medical exam or test because of their disability. Seventy-five percent (75%) replied that had never been told that. The twenty percent (20%) who replied in the affirmative were asked two additional questions. First, if the doctor had an “alternative plan for the exam or test” and 48% replied “No” the doctor did not have an alternative. Second, they were asked to provide more information about what test, and what was the problem. The themes that emerged from the close to 50 comments were categorized by type of test and also, if possible, by the issue.
Test and Exams
- Women's health (Pap Test, pelvic exam, etc.) - Stress test (couldn’t use treadmill, etc.) - Blood work
- Swallowing study
- Other tests and issues
Issues
- Related to challenges because of disability (couldn’t sedate, physically unable, anxiety, etc.) - Inaccessible testing and exam equipment
- Communication issues and difficulties (non-verbal, no interpreter, etc.) - Cost and financial issues (wasn’t covered by insurance plan, etc.
Chronic Disease Identification
Respondents were asked if they currently had or if they had ever been told by doctor, any of the following “chronic diseases”: Cardiovascular Disease (CVD)4, Cancer, Diabetes, or Asthma. Of the 243 responses, 53% replied that they had “none of the above.” For those who identified as having one (or more) of the Chronic Diseases listed, the responses included following:
Chronic Disease Count
Cardiovascular Disease 57 Diabetes 46 Asthma 45 Cancer 15 Cardiovascular Disease
The 57 respondents who identified as having CVD were asked a series of additional questions on their response. When asked to identify what type of CVD they had, or had been told they had, more than half wrote high blood pressure. Respondents were asked a series of questions about various cardiovascular diseases:
Have you ever been told you had… Count Percent High Blood Pressure 49 86%
“Heart Attack” or Myocardial Infarction 3 6%
Angina or Coronary Heart Disease 7 13%
Stroke 9 16%
Cardiovascular Disease Care
Respondents who reported being told they had, or been told they had, high blood pressure were asked about current medications for high blood pressure. Eighty-eight percent (88%) acknowledged that they are currently taking medication for their high blood pressure. When those who selected CVD were asked if they take an aspirin daily or every other day, forty-one percent (41%) replied “yes.”
CVR: Problems with Care Because of Disability
When asked if they had ever had any problems or issues with their care for CVD because of their disability, 84% said “no.” For those who had experienced problems that were asked to provide additional information, and some
4 Respondents were instructed that Cardiovascular Disease could include: heart disease, hypertension or high blood pressure even if well
of the issues included: medicine interactions, not being taken serious because of mental health history, transportation costs to continue therapy.
Cancer
Fifteen (15) respondents responded that they had, or had been told by doctor they had, cancer. The majority (67%) reported just have “one” cancer, while 33% had two types. Respondents were asked to provide information about the type of cancer.
Type of Cancer Count
Breast Cancer 3
Skin Cancer 2
Other / Various 9
The majority (12) reported being diagnosed after 41 years of age. Four of the respondents were currently receiving treatment for cancer. When asked what type of doctor was providing their treatment, they selected “Family Practitioner” (2) and “other” (2).
Eighty percent (80%) acknowledged that they had received instructions of where they should return, or who they should see, for routine cancer check-ups after completing treatment for cancer. Fifty-eight (58%) said the instructions were written down or provided in print. (Only one person requested, and received, the instructions in another format because of their disability.)
Ninety-three percent (93%) reported that their insurance paid for all or part of their treatment. Four (4) acknowledged being denied health or life insurance because of their cancer diagnosis.
Cancer: Problems with Care Because of Disability
When asked if they had ever had any problems or issues with their care for cancer because of their disability, the majority (80%) replied “no.” For the two who had experienced problems, they were ask to provide more
information, and the issues included coordinating treatment with current medications (the respondent did not specify if medications were for disability) and difficulty in getting on “table” for radiation treatments.
Prostate Cancer Screening
Respondents who identified as “Male” and over 40 years of age were asked about the Prostate-Specific Antigen test, also called a “PSA test,” a blood test used to check men for prostate cancer. When asked if a doctor had ever recommended that they have a PSA test, thirty-five percent (35%), 17 of 49 respondents, replied “yes” versus the 51% who replied “no,” and 14% who didn’t know or were unsure. When asked if they ever had a PSA test, thirty-five percent (35%), 17 of 49 respondents, replied “yes” versus the 45% who replied “no,” and 20% who didn’t know or were unsure. For those who responded “yes” they have had a PSA Test, they were asked the follow-up question of how long it has been since the test, seven of the 11 who responded said within the past two years.
Women’s Health Screenings
Respondents who identified as “Female,” and based on their age, were asked a series of questions on whether they had received specific tests and exams such as Mammogram, Clinical Breast Exams, and Pap Test.
Mammogram
Women, 40 years or older, were asked if they had ever had a Mammogram, ninety-three percent (93%), 55 of 59 respondents, replied “yes.” For those who responded “yes” they have had a Mammogram, they were asked how long it has been since the test, seventy-six percent (76%), 42 of the 55 respondents, said within the past two years5. When asked if they have ever experienced a problem with receiving a mammogram because of their disability, eight (8) respondents acknowledged they had. Some of the problems mentioned were related to not being able to physically do the test, not being able to stand, and not being able to position body.
5 According to the “Mammogram Fact Sheet” on the Womenshealth.gov, it is recommended that “women ages 50 to 74 years should get a
Clinical Breast Exam
Women, 40 years or older, were asked if they had ever had a Clinical Breast Exam, eighty-six percent (86%), 51 of 59 respondents, replied “yes.” For those who responded “yes” they have had a Clinical Breast Exam, they were asked how long it has been since the test, sixty-nine percent (69%), 35 of the 51 respondents, said within the past two years.
Pap Test
Women, 21 years or older, were asked if they had ever had a Pap Test, eighty-six percent (86%), 84 of 98 respondents, replied “yes.” For those who responded “yes” they have had a Pap Test, they were asked how long it has been since the test, sixty-nine percent (69%), 58 of 84 respondents, said within the past two years6. When asked if they had ever experienced a problem with receiving a Pap Test because of their disability, twenty (20) respondents acknowledged they had. Those respondents were asked to provide more information about the problem and the comments were categorized into the following themes: accessibility problems with medical office, physical and emotional issues, and issues with health care provider such as not being trained to work or
uncomfortable with woman with disability).
Colorectal Cancer Screenings
Respondents who identified as being 49 years of age and older were asked a series of questions on colorectal cancer screening such as a blood stool test (a test that may use a special kit at home to determine whether the stool contains blood), sigmoidoscopy and colonoscopy (exams in which a tube is inserted in the rectum to view the colon for signs of cancer or other health problems). When asked if they had ever had a blood stool test using a home kit, thirty-eight percent (38%), 28 of 73, replied “yes” versus the 60% who replied “no,” and 1% who didn’t know or were unsure. For those who responded “yes” they have had the test using the home kit, they were asked how long it has been since the test, twenty-five percent (25%), 7 of 28, said within the past year.
When asked if they had ever had sigmoidoscopy and colonoscopy exam, seventy-three percent (73%), 54 of 74, replied “yes” versus the 24% who replied “no,” and 3% who didn’t know or were unsure. The majority (87%) received a colonoscopy exam.
Diabetes
The respondents, who identified as having, or being told they had Diabetes, were asked a series of additional questions on about their response. When asked what type of Diabetes they had, or had been told they had, more than half selected “Type 2 Diabetes” followed by Type 1, and then Pre-Diabetes.
Diabetes Count Percent
Type 2 Diabetes 24 57%
Type 1 Diabetes 7 17%
Pre-Diabetes or Borderline Diabetes 6 14%
When asked when they were told they had diabetes, most (22 respondents) reported they were told between the ages of 21 and 40, with 13 respondents stating between the ages of 51 – 60 years of age.
Diabetes Care
When asked how often they saw a health professional about their diabetes, the number of times that respondents reported seeing a doctor or other health professional about their diabetes varied but was concentrated around 0 to 4 times a year with the most frequently report number being 4 times a year.
.
6 According to the “Pap Test Fact Sheet” on the Womenshealth.gov, it is recommended that “…starting at age 21, have a Pap test every 2
Number of Times Past 12 Months Count
0 times in the past 12 months 5 1 times in the past 12 months 6 2 times in the past 12 months 6 3 times in the past 12 months 6 4 times in the past 12 months 10
Fifty percent (50%), 21 of 42 respondents, reported that their “A1C” was checked “2 or more” times in the past 12 months by a doctor, nurse, or other health professional. When asked how many times in the past 12 months has a health professional checked their feet for any sores or irritations, the most frequently occurring “times” were 0, 1, and 4 times a year. When asked if they had ever been told they had retinopathy, 34 of 41 respondents (83%) said “no.”
Sixty-three percent (63%), 26 of 41 respondents, reported having taken a class on how to manage their diabetes. Those who replied “no” were asked why they hadn’t taken a class, and the themes reflected in their comments included: no need, not aware of any or the need, and not recommended by doctor.
Diabetes: Problems with Care Because of Disability
When asked if they had ever had any problems or issues with their care and how to manage their diabetes because of their disability, the majority (81%), 34 of 42, replied “no.” For the several who had experienced issues and problems, they were asked to provide more information and some of the issues included: no interpreter, no accessible formats, limited food and diet options (in congregate living), and unaffordable equipment.
Asthma
The respondents, who identified as having or being told they had Asthma, were asked a series of additional questions about their response. When asked if they still had Asthma, eighty-six percent (86%), 36 of 42 respondents, said they did. Many (34 of 42 respondents) were 30 years or younger when they were they were told they had Asthma, with under 10 years of age being the most frequently reported range.
Asthma Care
When asked if a doctor or other health professional had ever given them an “asthma action plan,” sixty-seven percent (67%), 28 of 42 respondents, replied either “no” or “don’t know/unsure.” For those who responded that they had an “asthma action plan,” they were asked a follow-up question about the last time the plan was updated. For those with an “asthma action plan,” fifty-seven percent (57%), 8 of 14 respondents, reported it has been within the past two years. Respondents were also asked about to identify if their prescription medications to control their asthma were “long-term control” or “quick-relief” medicines. When ask how many times in the past 12 months had they visited the emergency room or some other urgent care center for their asthma, most, 34 of 40 respondents, reported zero (0) times. When asked how many times they had to see their doctor or health professional for treatment for “worsening asthma symptoms,” many, 26 of 40 respondents, reported zero (0) times. Most (32 of 41 respondents) also reported that they saw their doctor or health professional 0-1 times in the past 12 months for an annual checkup for their asthma. When asked about the number of days during the past 12 months they were unable to work or carry out their usual activities because of their asthma, for most (25 of 41 respondents) the number reported was zero (0) days.
Oral Health
Respondents with a disability were asked how long had it been since they last visited a dentist or a dental clinic for any reason (including visits to dental specialists, such as orthodontists), the majority (70%), 166 of 238 respondents, reported that it had been within the past year. For 10%, it had been 5 or more years ago. Only 3% responded that they have “never” visited. When asked how long it had it been since they had their teeth cleaned by a dentist or dental hygienist, again the majority (61%), 146 of 239 respondents, reported that it had been within the past year. For 11%, it had been five or more years since a cleaning.
When asked if they had ever had any problems or issues with their oral health care because of their disability, the majority (68%), 162 of 237 respondents, replied “no.” The 28% who reported that they had experienced issues and problems because of their disability were asked to provide more information on the issues and problems. The more than 60 comments were categorized into the following themes:
- Limited or no services because of cost and insurance
- Physical, anxiety, and related issues (can’t sit still, not being able to physically open mouth, etc.) - Accessibility in equipment and office (problems transferring to dental chair, lack of interpreter, etc.) - Lack of understanding and knowledge on part of Dentist (Dentist has no experience working with people
with disability, won’t accept patients with disability, etc.)
Health Behaviors
Obesity
When asked if their doctor or health care provider had ever told them that they needed to lose weight, there was almost an even distribution among the 239 respondents, forty-seven percent (47%) replied “Yes,” and 49% replied “No.” For those who responded “Yes” they were asked a follow-up question about whether the doctor and health care provider said they were “obese,” forty-five percent (45%), 51 of 112 respondents, said “Yes.”
Tobacco Use
When asked if they had smoked at least 100 cigarettes in their entire life, the majority of respondents (78%), 184 of 237 respondents, replied “No.” Respondents who acknowledged that they had smoked more than 100
cigarettes were asked a series of questions about their smoking patterns and attempts to quit. Only 19 respondents acknowledged smoking on a daily basis.
The overwhelming majority (98%), 234 of 239 respondents, reported that they were not currently using other tobacco products: chewing tobacco, snuff, and snus.
Alcohol Consumption
When asked about their alcohol consumption patterns with the past 30 days, most (68%), 161 of 237
respondents, had not had any type of alcoholic beverage. The seventy-two (72) respondents who acknowledged that they had had at least one drink in the past 30 days were asked to provide the number of alcoholic beverages they consume per week. The most frequently reported number was one (1) drink per week for 33 respondents, followed by two (2) drinks per week for 9 respondents.
Food Choices and Sodium/Salt Intake Fruit and Vegetables
Respondents were asked to consider the past month and report the number of times per week they consumed fruit, dark green vegetables, and cooked (or canned) beans. A variety of responses were received ranging from zero (0) to numbers that suggested the question may have been misunderstood.
Food Choices Highest Frequency Range/Responses
Fruits 0-5 times a week 17 – 27
Dark, Green Vegetables 0-3 times a week 29 – 35
Beans 0-2 times a week 45 - 59
Sodium Intake
Respondent were asked if they were currently watching or reducing their sodium/salt intake. The majority, 139 of 232 respondents (60%), replied “No.” For respondents who acknowledged that they were watching or reducing their sodium intake, most were doing so on a daily basis.
Sleep
Respondents were asked to consider the past month and report the number of days they felt they did not get enough rest or sleep. A range of responses were received; the two most frequently reported number of days where not enough rest or sleep was zero (0) days per month (58 responses) and thirty (30) days per month (21 responses).
Exercise
When asked if, other than your regular job, did they participate in any physical activities or exercises over the past month, the majority, 143 of 232 respondents (62%), replied “Yes.”
Community Health and Wellness Programs
Respondents were asked to provide information on their utilization of health and wellness programs in the community.
Member of a Health and Wellness Facility
When asked if they were a member of a Health and Wellness facility like the YMCA, seventy-seven percent (77%), 177 of 230 respondents, replied “No.” A follow-up question was asked to find out why they were not a member. For many, 58 of 177 respondents (33%), cost was the issue, followed by no interest in joining (27%).
Health and Wellness Classes
Respondents were asked if they have ever taken any classes that promote health and wellness, many, 160 of 234 respondents (68%), had not. When asked why they hadn’t, most, 61 of 158 respondents (39%), were not
interested.
INShape Indiana
Since the State of Indiana has a state-sponsored website – INShape Indiana7 - and a statewide campaign to promote health and wellness activities for all Hoosiers, respondents were asked if they had ever heard of the website. Many, 177 of 230 respondents (77%), had not heard of the website, INShape Indiana.
Health Information
Respondents were asked how they get their health-related information, and many identified health professionals, family and friends, and the Internet as their primary sources of information.
Caregiver
Additional questions were asked of the respondents who identified as “a parent, family member, or guardian of a person completing the survey for person with a disability” to find out more about their caregiving capacity. The questions selected to be presented to caregivers were a subset of questions that had been used in the “Caregiver Module” in some state for the CDC’s Behavioral Risk Factor Surveillance System (BRFSS).
Eighty-eight percent (88%), 82 of 93 respondents, reported providing “care or assistance” for the person for which they were completing the survey, and many were parents completing the survey for a child. When asked to pick the primary area where the person they were providing care needed the most help, many selected “taking care of self (eating, dressing, bathing),” followed closely by “taking care of residence or personal living space.” When asked about the number of caregiving hours per week, the highest frequencies were reported in the 1-10 hours per week (25 respondents), followed by those providing more than 101 hours (19 respondents). When asked about the greatest difficulty faced as a caregiver (and they could select up to two difficulties), many (32
respondents) selected “creates stress.” A few of the other more frequently selected choices included: creates a financial burden (19 responses), affects family relationships (17 responses), and doesn’t leave enough time for self (15 responses).
Perspectives from Disability Service Providers and Professional
The “respondents without a disability,” which included disability professionals (124) and others without a disability (8), were asked only a few questions since the survey was intended for persons with a disability. The respondents
7
without a disability (mostly disability professionals) were asked to provide insights into barriers for people with disabilities in accessing health care and staying healthy while managing a chronic disease.
Health Care Barriers
Respondents without a disability were asked to identify major barriers faced by people with disabilities to accessing health care in their community. More than 100 comments were received from respondents without a disability, and the items were categorized into themes:
- Transportation
- Health care professionals - lack of training in working with, and attitudes towards, people with disabilities - Access to sufficient health insurance - lack of, eligibility, limited coverage
- Lack of knowledge - individuals and families
- Lack of health care providers - accept Medicaid, quality, specialized - Financial / cost Issues to access health care, specialized services - Communication problems - with health care staff, health care forms - Issues with disability service providers
Managing Chronic Disease in Community
When asked if, as a disability professional, they felt they had enough information to assist their clients who are managing a chronic disease such as Cardiovascular Disease, Diabetes, Cancer, or Asthma, forty-two percent (42%), 52 of 124 respondents, replied “Yes.” When asked to provide comments on what they saw as the major barriers for people with disabilities in staying healthy while managing a chronic disease, close to 100 comments were received. The themes suggested by the comments included:
- Cost and financial issues
- Lack of access to food choices that support health
- Lack of information and knowledge - disease management, wellness
- Lack of transportation to support health - medical appointments, support groups - Lack of health care professionals - don't take Medicaid, not available locally, specialists
- Self-care not adequate – not taught how to care for self, noncompliance with treatment and medications - Lack of knowledge on health & wellness - staying healthy, food choices, poor health habits
- Lack of access to exercise - facilities, community - Lack of support
- Limited services
- No health care coordination
- Lack of training of health care professionals - working with people with disabilities - Accessibility barriers
- Communication
- Dependency on caregivers - professionals, family - Insurance barriers
Promoting Healthy Lifestyles in the Community
When asked what they felt could be done to promote healthy lifestyles for people with disabilities in the community, more than 100 comments were received. The themes suggested by the comments included:
- Provide health-related information and education opportunities (health fairs, health screenings) - low cost, accessible, inclusive
- Provide more exercise opportunities - Improve access to healthy food choices - Have more transportation options
- Provide more inclusive community activities, and better access
- Educate and train service providers and caregivers to promote health and wellness - Address accessibility issues
- Encourage more home-based health education services
- Encourage health care professionals that take Medicaid and are trained to work with people with disabilities
- Involve volunteers and mentors to encourage health and wellness behaviors - Provide more health care service options
- Improve communication
Disability and Health Study Group
The results from the 2013 Indiana Disability Poll: Focus on Health Issues will be one of the primary source documents reviewed by the Disability and Health Study Group (“Study Group”) that will convene in late 2013. The Study Group will be coordinated by the Indiana Institute on Disability and Community, with input from the Indiana State Department of Health, and will include representatives from various state and local disability organizations, county public health departments, and other invited stakeholders.
Full Report
The full report of the 2013 Indiana Disability Poll can be downloaded from the Disability Poll page on the website of the Center for Planning and Policy Studies at the Indiana Institute on Disability and Community.
URL:http://www.iidc.indiana.edu/cpps
For Further Information
For further information about the 2013 Indiana Disability Poll, contact the Center for Planning and Policy Studies at the Indiana Institute on Disability and Community, 2853 East 10th Street, Bloomington, IN 47408. Phone: 812-855-6508 or 812-855-9396 (TT). E-mail: [email protected]
