State Strategies for Promoting Wellness and Healthy Lifestyles for People with Disabilities

Association of State and Territorial Health Officials 2013 2231 Crystal Drive, Ste 450, Arlington, VA (202) 371-9090 www.astho.org

Inadequate access to preventive health and other health promotion services among people with disabilities compared to the general population is a public health concern. More than 54 million peopleone in five Americanshave a disability with which they were either born or acquired through injury, age, or illness.2,3 In 2006, disability-associated healthcare expenditures for adults in the United States totaled $397.8 billion (26.7% of all expenditures).4 Of this national total, $118.9 billion was for the Medicare population, $161.1 billion for Medicaid recipients, and $117.8 billion for non-public (privately insured or uninsured) sources.5 Medicaid serves an estimated 9.9 billion children and adults with disabilities and is the primary way of providing healthcare services to people with disabilities.6 A disability is a feature of the body, mind, or senses that can affect a persons daily life. People with disabilities need healthcare and health promotion programs for the same reasons that the general population does. Despite this knowledge, people with disabilities experience barriers to preventive healthcare services, which can lead to poor health status, delayed treatment of chronic illnesses, and failure to prevent secondary conditions or health problems related to a disability. Research indicates that people with disabilities may be disproportionately affected by excess weight or obesity; increased risk for diabetes, hypertension, substance abuse, injury, depression, and stress; and receive less frequent cancer screenings compared to people without disabilities.7 Health disparities for people with disabilities vary by ethnicity, age, gender, and income level.8 Several national initiatives are focused on people with disabilities and provide leadership for an increased public health focus on the health issues that affect people with disabilities. Some of these include:

The American Public Health Association (APHA) Disability Section.9 The Healthy People 2020 inclusion of a focus area on disability and health.10 The U.S. Surgeon Generals Call to Action to Improve the Health and Wellness of Persons with

Disabilities.11 HHSs National Partnership for Action to End Health Disparities.12

In addition, CDCs National Center on Birth Defects and Developmental Disabilities (NCBDDD)13 supports 18 state-based programs to ensure that individuals with disabilities are included in ongoing state disease prevention, health promotion, and emergency response activities.

More people with disabilities are living longer, higher-quality lives due to the positive impact of public health, medical, and other interventions. State and territorial health agencies play a key role in ensuring people with disabilities have access to these healthcare and health promotion services. This issue brief provides some background on the barriers and challenges to accessing preventive healthcare and health promotion services and highlights some of the initiatives that state public health agencies have undertaken to remove those barriers.

A disability is a feature of the body, mind, or senses that can affect a persons daily life. People with

disabilities need healthcare and health promotion programs for the

same reasons that the general population does.1

State Strategies for Promoting Wellness and Healthy Lifestyles for People with Disabilities

Association of State and Territorial Health Officials 2013 2231 Crystal Drive, Ste 450, Arlington, VA (202) 371-9090 www.astho.org

Barriers to Preventive Health and Health Promotion Activities and Services

There are significant health inequities that lead to inadequate access to preventive health and other health promotion services among people with disabilities. People with disabilities are more likely to experience disadvantages in health and well-being compared to the general population, and barriers to preventive health services can often delay treatment of chronic conditions and failure to prevent secondary conditions. Widespread challenges to accessing healthcare services and health promotion activities for people with disabilities include physical, environmental, programmatic, and attitudinal and cultural barriers. To begin removing these barriers, public health needs to consider a new approach where accessibility and accommodation for people with disabilities is part of the overall agenda. Public health can also help eliminate health inequities by addressing social determinants of health (e.g., education and poverty) that exist among people with disabilities.

Physical Barriers Due to the lack of accessible places to be physically active (e.g., sidewalks, parks, fitness centers, green spaces), individuals with disabilities are more likely to be less physically active than people without disabilities. In 2008, the National Health Interview Survey reported that 27.3 percent of people with disabilities met the 2008 Physical Activity Guidelines for Americans, whereas 46.9 percent of the general population met the same guidelines. Engaging in regular physical activity is one of the most important things that people of all ages and abilities can do to improve their health, well-being, and quality of life. Although the causes of obesity are diverse and complex, lack of accessible places to be physically active, combined with other food access factors (e.g., difficulty preparing and shopping for healthy foods), create additional barriers for people with disabilities. Having access to places and spaces to be physical active may also help to prevent some secondary conditions. Consequently, when public spaces schools, offices, healthcare facilities, and parksare built, they should be designed using the Universal Design14 principles so they can be used by all people, regardless of age and ability.

People with disabilities also often lack access to basic primary and preventive health services due to medical equipment that is not accessible.15, 16 Despite being at higher risk of developing certain chronic and secondary conditions, these individuals are frequently prevented from receiving routine physical exams and weigh-ins, dental exams, x-rays, mammographies, Pap tests, colonoscopies, and vision screenings.

Environmental Barriers Environmental features affect a persons ability to participate in various preventive health and health promotion activities and services. The built environment includes a communitys physical form (e.g., urban design, land use patterns, and the transportation system) as well as the accessibility of public buildings, facilities, and housing. When communities are not walkable/bikable/rollable, it contributes to inadequate healthcare service access, levels of physical inactivity, and social isolation of people with disabilities. In addition, finding accessible housing can be a challenge for people with disabilities who want to live independently. When a home is not accessible, there is greater potential for falls, decreased independence, and isolation. 17

To begin removing the health barriers that people with disabilities face, public health needs to consider a new approach where accessibility and accommodation for people with

disabilities is part of the overall agenda.

State Strategies for Promoting Wellness and Healthy Lifestyles for People with Disabilities

Association of State and Territorial Health Officials 2013 2231 Crystal Drive, Ste 450, Arlington, VA (202) 371-9090 www.astho.org

Programmatic Barriers

Programmatic access to primary and preventive healthcare services can refer to both the practices and policies that are part of the delivery system. Medical equipment that is not accessible, healthcare professionals who are not appropriately trained, lack of interpreters during exams, and lack of individual accommodations prevent many people with disabilities from accessing basic medical services.21,22 Access can be particularly challenging in rural areas where workforce challenges are more prevalent. In addition, people with disabilities often lack health insurance or coverage for specialty care services, including long-term care, care coordination, prescription medications, durable medical equipment, and assistive technologies.23 Obtaining treatment and achieving recovery can be challenging for anyone struggling with substance abuse, but people with disabilities are often inhibited by additional obstacles. A number of risk factors, including lack of access to prevention and treatment services, make people with disabilities more vulnerable to encountering problems associated with substance abuse.24 Research shows that substance abuse prevalence rates are higher for people with disabilities (e.g., traumatic brain injuries, spinal cord injuries, or mental illness) compared to the general population.25,26 Attitudinal and Cultural Barriers Attitudinal and cultural barriers related to healthcare services often lead to discrimination toward people with disabilities and can be more challenging to overcome than physical, environmental, and programmatic barriers. Healthcare providers may overlook mental health and substance abuse needs because they are focused on a patients disability, often leading to misdiagnosis or not being diagnosed at all.27 If left untreated, non-disability- related health conditions could exacerbate other secondary conditions. Providers may also mistakenly assume that people with disabilities are not sexually active, especially if the disability is severe or disfiguring. Therefore, this population often is not screened for sexually transmitted diseases (STDs), and women are not given regular gynecological exams or advised about preconception health and healthy pregnancies.28

Women with Disabilities

About 27 million women in the United States have disabilities. Research indicates that women with disabilities may not receive health screenings regularly or screenings that adhere to the recommended guidelines.18 Failure to provide comprehensive services for women with disabilities can have significant implications on their health. Breast Health

Women with disabilities may have delayed diagnosis or treatment of breast cancer due to inaccessible mammography equipment. Self- reported mammography use is lower for women with a disability (72.2% for 40 years of age or older; 78.1% for 50-74 years of age) than women without a disability (77.8% and 82.6%, respectively).19

Reproductive Health

Women with disabilities are less likely than women without disabilities to report having a Pap test in the past three years.20 Inadequate service utilization may be due to: not being aware of the importance of having the exam, difficulty getting on the exam table, or finding a provider who is knowledgeable about their specific disability. In addition, women with disabilities may not receive regular gynecological exams or STD screenings due to providers assuming they are not sexually active.

State Strategies for Promoting Wellness and Healthy Lifestyles for People with Disabilities

Association of State and Territorial Health Officials 2013 2231 Crystal Drive, Ste 450, Arlington, VA (202) 371-9090 www.astho.org

Strategies for State and Territorial Health Agencies State and territorial health agencies play an important role in expanding health promotion and wellness activities for people with disabilities. CDC currently supports 18 states with implementing disability and health programs, 11 of which are a collaboration with or housed within the state health agency. Even when states do not have specific disability and health programs, state health agencies can include people with disabilities in health promotion services and activities. Strategies that states may consider to reduce the barriers for people with disabilities include the following:

Work with healthcare providers to ensure medical equipment (e.g., exam tables, scales), facilities, and buildings are accessible to increase the utilization of preventive services.

Encourage providers to advocate for their patients with disabilities and ensure that all available resources are used to treat a patient.

Work with healthcare providers to ensure that staff are adequately trained to provide preventive services to people with disabilities.

Develop policies to encourage health insurers to provide provisional transition services to ensure continuity of care in the event of provider or service plan change.

Develop, strengthen, and enforce policies that further the Americans with Disabilities Acts scope. Many healthcare providers lack awareness of what is required to ensure patients with disabilities have access to culturally-appropriate care.

Include people with disabilities in the planning, reporting, and evaluation of topics such as medical reimbursement, health service delivery, community planning, communication, and transportation.

Include people with disabilities in the design, planning, and implementation of community interventions. Have individuals with disabilities conduct staff trainings.

Target people with disabilities in all health promotion, preventive health, mental health, and substance abuse outreach and programs.

Partner with organizations that advocate and serve people with disabilities to leverage the work they are already doing, expand efforts, and create greater reach.

Educate people with disabilities about the importance of preventive health services. Encourage them to advocate for their health needs and speak up when they are not being met.

Work with wellness and fitness centers to reduce the barriers to physical activity programs by ensuring access to facilities and equipment. Encourage implementation of programs that target individuals with disabilities.

Facilitate partnerships with a variety of state, local, and private agencies (including mental health services, social services, Medicaid, transportation, and other programs) to coordinate efforts to increase services and decrease physical, environmental, attitudinal, and cultural barriers for all programs and interventions.

Develop materials in accessible formats (e.g., braille, large print, audio tape, e-text) that are at the appropriate reading level and available in different languages.

Include pictures of people with disabilities and of different ethnicities in program materials and messaging (posters, flyers, brochures, PSAs, videos) to encourage participation.

State Strategies for Promoting Wellness and Healthy Lifestyles for People with Disabilities

Association of State and Territorial Health Officials 2013 2231 Crystal Drive, Ste 450, Arlington, VA (202) 371-9090 www.astho.org

State Disability and Health Activities

State disability and health programs are collaborating with other state and local agencies to promote wellness and healthy lifestyles for people with disabilities. These programs have developed a variety of initiatives around issues related to access, womens health, health promotion training and curricula for consumers and providers, emergency preparedness, physical activity, and worksite health promotion. The following state examples highlight some of these activities.

The Illinois Disability and Health Program collaborated with the Illinois Department of Public Healths Office of Womens Health to include language in its Womens Health Mini- Grant Program application, encouraging grantees to include women with disabilities as a target group. There are three different health promotion programs offered through the mini- grants: Women Walking Out, Building Better Bones, and Life Smart for Women. Specific disability-related questions were also added to the mini-grant quarterly reports in fiscal year 2013 to identify the number of women with disabilities who participate in the programs. By continuing to collect this data in 2014 and beyond, the programs will learn how many women with disabilities participate in womens health programs and increase disability awareness among grantees. The Massachusetts Department of Public Health promotes and provides sensitivity training to healthcare providers on the unique health needs of people with disabilities. With CDC funding, the state Health and Disability Program (HDP) adapted its Welcoming Workshops presentation to include Navigating the Patient with a Disability for patient navigators. This modification includes information on the Massachusetts Facility Assessment Tool, accessible print materials, and planning accessible meetings. HDP also tailors its workshops to include audience-specific information to achieve high impact. By strengthening ties to other programs within the state, HDP has a direct impact on healthcare providers working with people with disabilities.

The Michigan Department of Community Health (MDCH) has been promoting the evidence-based, chronic disease self- management, Personal Action Toward Health (PATH) program to people with disabilities, so about half of the PATH participants have a disability. This goal has been achieved by offering workshops at disability-friendly locations throughout the state; collaborating with disability service, advocacy, and behavioral health organizations; training people with disabilities as PATH leaders; and targeting marketing. In addition, MDCH developed a postcard to market disability-friendly physical activity options to people with disabilities. The postcards are placed in disability advocacy and service locations statewide. MDCH has also worked with the state American Cancer Society chapter and the states Breast and Cervical Cancer Prevention Program to determine the building and equipment accessibility of mammography facilities throughout the state. Through an online portal, women with disabilities are able to search for accessible facilities in their county.29 The Montana Disability and Health Program (MTDH) works to infuse disability health and wellness goals into the plans, policies, programs, and procedures of state agencies and community service providers by having people with disabilities serve as disability advisors in public health standing committees. As part of the planning process, disability advisors identify disability-specific resources to protect and promote or barriers to remove. MTDH has created practice guidelines that offer suggestions on how to involve people with

State Strategies for Promoting Wellness and Healthy Lifestyles for People with Disabilities

Association of State and Territorial Health Officials 2013 2231 Crystal Drive, Ste 450, Arlington, VA (202) 371-9090 www.astho.org

disabilities as members of advisory groups.30 In addition, MTDH and the Montana Housing Task Force support and advocate for visitability in home design through a statewide educational campaign. To date, approximately 8,300 consumers, builders, architects, policymakers, and other stakeholders have been educated about visitability in home design.31 The New York State Department of Health (NYSDOH) Disability and Health Program (DHP) developed an inclusion policy that requires all NYSDOH requests for proposals and applications to incorporate strategies to ensure people with disabilities are integrated into public health programs and services. In addition, all programs must include an evaluation component to assess the policys effect and reach. DHP also developed a Medicaid Buy-In Program for Working People with Disabilities (MBI-WPD),32 which allows working people with disabilities to earn additional income without the possibility of losing critical healthcare coverage. A toolkit has also been created to help New Yorkers determine if they would like to apply for MBI- WPD and assist with the application process.33 The North Carolina Office on Disability and Health (NCODH) collaborated with the Center for Universal Design to develop Removing Barriers to Health Clubs and Fitness Facilities: A Guide for Accommodating All Members, Including People with Disabilities and Older

Adults.34 NCODH developed a community- centered training model based on this guide with the goal of creating fitness environments that are accessible, safe, and support people of all abilities. NCODH also offers the Work Healthy, Live Healthy program, which focuses on providing environmental supports for health promotion at worksites to promote healthy lifestyle choices. The program targets adults with disabilities who receive services at community rehabilitation agencies. The South Carolina Interagency Office of Disability and Health (SCIODH) has partnered with the University of South Carolina to teach future medical professionals and paraprofessionals about the specials needs of people with disabilities. Students are taught how to lift patients from wheelchairs and onto an examination table, how to communicate in a sensitive way, and what it means to have a disability. SCIODH also partnered with the state Department of Disabilities and Special Needs and the state health agency to develop the Steps to Your Health program, which is designed for people with intellectual disabilities. Program participants reported increased knowledge, healthier self-reported diet, more frequent physical activity, and reduction in body mass index following the program.35 SCIODH follows up with class attendees after one year to see if they have maintained the healthy lifestyles they learned.

Conclusion State health agencies are increasingly focusing on health and wellness promotion initiatives for people with disabilities. However, these programs currently exist in a limited number of states, indicating room for growth at the national and state levels. Research indicates that disability and health programs are beneficial not only for people with disabilities, but for the population and economy as a whole because these programs decrease healthcare expenditures due to preventable illness, reduce disparities, and promote inclusiveness and access for all. As public health moves toward integrating disability into its overall agenda, state health agencies need to continue to prioritize accessibility; accommodations and alternative formats; messaging and communications; and disability sensitivity, cultural awareness, and etiquette to ensure that people with disabilities can participate to their full extent.

State Strategies for Promoting Wellness and Healthy Lifestyles for People with Disabilities

Association of State and Territorial Health Officials 2013 2231 Crystal Drive, Ste 450, Arlington, VA (202) 371-9090 www.astho.org

Resources American Association on Health and Disability (AAHD) www.aahd.us AAHD Health Promotion Resource Center http://www.aahd.us/resource-center/ AAHD Susan G. Komen Race for the Cure Grants http://www.aahd.us/initiatives/susan-g-komen-grants/ Amputee Coalition http://www.amputee-coalition.org/ ASTHO Disability Case Studies http://www.astho.org/Programs/Access/Maternal-and-Child-Health/Disability-Case-Studies/Disability- Case-Studies/ Association of University Centers on Disabilities http://www.aucd.org CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD) http://www.cdc.gov/ncbddd/index.html CDC NCBDDD State Disability and Health Programs http://www.cdc.gov/ncbddd/disabilityandhealth/programs.html National Association of County & City Health Officials http://www.naccho.org/topics/HPDP/healthdisa/ Substance Abuse and Mental Health Service Administration Wellness Initiative http://promoteacceptance.samhsa.gov/10by10/ 1 HHS. The Surgeon Generals Call to Action to Improve the Health and Wellness of Persons with Disabilities. HHS, Office of the Surgeon General, 2005. Available at: http://www.surgeongeneral.gov/library/calls/disabilities/calltoaction.pdf.pdf. Accessed 11-14-2013. 2 American Association on Health and Disability. Health Promotion and Wellness for People with Disabilities. April 2011. Available at: http://www.aahd.us/2011/04/health-promotion-and-wellness-for-people-with- disabilities/. Accessed 10-16-2013. 3 HHS. The Surgeon Generals Call to Action to Improve the Health and Wellness of Persons with Disabilities. HHS, Office of the Surgeon General, 2005. Available at: http://www.surgeongeneral.gov/library/calls/disabilities/calltoaction.pdf.pdf. Accessed 11-14-2013. 4 Anderson WL, Armour BS, Finkelstein EA, Wiener JM. Estimates of state-level health-care expenditures associated with disability. Public Health Rep 2010;125(1):4451. Available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2789815/. Accessed 10-16-2013. 5 Ibid.