Disability and Health Journal 7 (2014) 19e25 www.disabilityandhealthjnl.com
Commentary: Chronic Conditions and Disability
Integration of chronic disease and disability and health state programs in Montana Meg Traci, Ph.D.*, and Tom Seekins, Ph.D. The University of Montana Rural Institute, Missoula, MT, USA
Abstract This paper describes the strategies used in one state, Montana, to improve the health of individuals at risk for or living with chronic conditions associated with disability. These strategies demonstrate capacity to intervene at individual and environmental levels, and reveal opportunities for public health professionals to collaborate with independent living and long term care partners. In this paper we attempt to outline some of the challenges inherent in these collaborations and suggest strategies to overcome them. Ó 2014 Elsevier Inc. All rights reserved. Keywords: Chronic conditions; Chronic disease; Disability; Environment; State public health program
The National Council on Disability (NCD) established the goal of improving the health of people with disability in its 1986 report, Toward Independence.1 The NCD worked with Congress to establish a program within the Center for Environmental Health and Injury Control at the Centers for Disease Control and Prevention (CDC). In doing so, they ushered in an era in which disability emerged as a significant issue in public health. That program initiated research to develop evidence-based interventions and funded several state programs to demonstrate the delivery of accessible health promotion programs and services. Pope and Tarlov2 and Brandt and Pope3 advanced the agenda significantly by assembling data on disability and by providing conceptual models that emphasized the environmental contribution to the experience of disability in two Institute of Medicine reports. They described the mechanisms by which impairments might lead to functional limitations, and those might lead to disability. They also described the ways that other health conditions (secondary conditions or co-morbidities) might contribute to increasing
This work was supported by CDC grant 1U59DD000991 from the Centers for Disease Control Prevention. The authors have no financial disclosures to report. Portions of this work were previously presented at the Disability Chair’s Forum at the meetings of the American Public Health Association, October 28, 2012, San Francisco, California. * Corresponding author. E-mail address: [email protected] or matraci@ruralinstitute. umt.edu (M. Traci). 1936-6574/$ - see front matter Ó 2014 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.dhjo.2013.10.006
the disability expected from the primary disability diagnosis alone. Researchers, policy makers, and state-based providers developed four primary strategies to address these factors, including (1) segregated servicesddelivering services designed for people with disability and the issues they faced, (2) public health servicesddelivering health promotion designed for the general population to people with disabilities, (3) environmental initiativesdpromoting the use of universal design to the built environment in ways that promoted participation and health for everyone, and (4) policy and systems change workdemploying advocacy techniques that promoted access to the first three.4e6 While these strategies were common across states, each state differed in how they were implemented. The remainder of this paper describes the approaches taken in one state, Montana.
Montana Montana’s involvement in the disability and health movement began in 1988 when the CDC awarded the University of Montana (UM) a research grant to assess secondary conditions experienced by people with disabilities and to explore the feasibility of a health promotion intervention delivered by centers for independent living (CILs). In 2002, CDC awarded a state capacity building grant to a partnership between UM and the Montana Department of Public Health and Human Services (DPHHS) to implement the Montana Disability and Health Program (MTDH). The goal of the state-based capacity building program was to create a
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comprehensive program of disability and health by integrating health promotion into disability systems and integrating disability issues into public health systems. University of Montana faculty’s participatory action research involved the systems, constituencies, science and values of independent living,7 citizen advocacy,8 and health promotion.9 It provided a framework, established a reputation among essential partners, and built capacity with those partners for organizing the Montana Disability and Health Program. First, we address the lessons learned from our research. Second, we describe how we collaborated to organize the MTDH program and the lessons learned from our capacity building efforts. Finally, we comment about the prospects for the future. Background We chose an independent living perspective and chose to work primarily with those disability organizations that shared that view. Many CILs were leery of close involvement with the medical field. To overcome those concerns, we emphasized the compatibility of the public health model10,11 with the New Paradigm of Disability.2,3,12e14 Specifically, public health and CILs share values that include (1) a view of health as not the equivalent to medicine but an outcome with several paths, (2) a belief in the possibility of recovery of societal participation after an acquired impairment(s), (3) a value for choice and for self-management of health, (4) a basic understanding of the role of the environment in determining outcome(s), and (5) a strong role for advocacy in promoting access to and the advancement of technologies to support health and participation. We also involved persons with disabilities to define secondary conditions, conduct surveillance activities, interpret the findings, and design the intervention.15e18 Their involvement expanded the focus of the assessment from the prevalence of diagnosed conditions to include limitation in participation due to secondary conditions, expanded the range of conditions found in the scientific literature to include consumer-oriented issues such as accessibility to community resources, and changed the original intervention design to include advocacy components for improving the community environment to facilitate participation. Those experiences and new tools, along with previous experience and tools from the independent living movement shaped the character of the Montana state-based program (MTDH).
Montana Disability and Health State Based Program Organizationally, MTDH was guided by a Core Management Team (CMT) composed of staff of the UM Rural Institute and representatives of the DPHHS. The longterm goal was to (1) improve the health of individuals with disabilities, (2) prevent and manage secondary conditions,
and (3) eliminate health disparities experienced by people with disabilities. Over 10 years, we conducted a series of projects to build familiarity among disability agencies and public health providers. Those projects e targeted activities e provided the opportunity for both sectors to see common elements in their values, vision, and strategies of health promotion as accessible to and equally effective for populations with disabilities. We proposed to follow five pathways to improve the health of Montanans, including: (1) increasing the availability and use of data describing the health status and behaviors of populations with disabilities for policy and program development, (2) building the capacity of disability service agencies to deliver health promotion designed for people with disabilities, (3) assuring that public health communications and education investments are accessible to and effective in populations with disability, (4) organizing disability advocacy to support sustained system improvements, and (5) intervening in the environment to achieve improved and equitable health outcomes.
Increasing availability and use of disability data At first, our academic research partners provided unique data that set the occasion for extensive discussions about disability and public health. To expand these discussions, the State BRFSS Epidemiologist integrated the disability identifier as a standard demographic variable into all analyses and data summary templates as an addition to other standard demographic variables (e.g., gender, race and ethnicity). This means, at minimum, that the health and health risk profiles of adult Montanans with disability are examined at the same time and by the same groups that examine the profiles of other subpopulations of adult Montanans. This practice frees MTDH resources from data analysis and facilitates a focus on the integration of disability partners in public health improvement efforts including addressing new public health data needs. For example, in 2004, the academic research team used the Behavioral Risk Factor Surveillance System (BRFSS) to establish a baseline of visitability in Montana.19
Building capacity with disability service agencies MTDH, the state-based program, provided training to CIL staff to deliver the Living Well with a Disability (LWD) program. Between February 1995 and April 2013, we trained 113 local program facilitators in Montana, and these facilitators served more than 900 adults with disabilities. On the basis of data from our original randomized effectiveness study, we project that each program participant experiences a total increase of 11.9 symptom free days per six months. In addition, we estimate that the program saves third party health insurers between $846,000 and $1.4 million dollars.
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We also provided training and technical assistance to the State’s residential service providers in the use of nutritional best practices and, eventually, Materials for Supporting Nutrition and Education with Adults with Intellectual or Developmental Disabilities (MENU-AIDDS).20 Between September 2006 and April 2013, a total of 160 group homes in 29 communities in Montana adopted the program. As such, MENU-AIDDS serves approximately 800 adults with intellectual and developmental disabilities three times each day, all year long. Evaluation showed significant improvements in homes that used core MENU-AIDDS components (planned menus and monitored residents’ dietary intake, body weight, and gastrointestinal function).20e22 Assuring public health accessibility Public health programs are covered by Section 504 of the Rehabilitation Act and by the Americans with Disabilities Act (ADA). Adherence to these laws means that all program facilities must meet accessibility guidelines for architectural space, and that programs and services must provide reasonable accommodations including health education print materials in accessible alternative formats. Through a brief ADA survey of Montana county health departments, the MTDH Core Management Team learned that many programs had difficulty providing printed and on-line program materials in alternative formats. MTDH supported Chronic Disease Prevention and Health Promotion (CDPHP) programs’ dissemination of alternative formats in public health campaigns, health promotion programs, and strategic plan implementations by providing consultation on the development of publications, conversion of regular print materials, and placement tactics to increase awareness among populations needing alternative formats. Organizing disability advocacy We proposed to employ various advocacy techniques to promote increased health and community participation by people with disabilities. One mechanism for this final strategy was to get people who experienced disability appointed to standing public health committees. With disability service agencies conducting evidence-based health promotion, there were disability advocates (e.g., LWD graduates) to represent the health promotion needs of populations with disabilities to public health partners. MTDH recruited, trained, and supported disability selfadvocates to serve on primary advisory councils and committees. In 2002, the state public health division placed people with disabilities on each CDPHP program citizen advisory committee. These committee members constituted the MTDH Disability Advisors program. Since 2003, MTDH has recruited, trained and supported 23 Disability Advisors to serve on 15 state-level public health standing committees. Today, MTDH supports six Disability Advisors who serve on five public health committees guiding programs in the
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Chronic Disease Prevention and Health Promotion Bureau. Many more CIL staff and peer advocates act in the capacity of a ‘‘disability advisor,’’ serving locally on county-level public health committees without direct MTDH support. Initial Disability Advisors activities began with targeted education activities to increase awareness among public health partners of the civil rights of persons with disabilities. A sentinel outcome of this education was the adoption of accessible meeting guidelines for public health standing committees and the fulfillment of accommodation needs of Disability Advisors. The advisors were successful in developing public health data and reports as well as programs and strategic plans that were more inclusive of populations with disabilities. They were also effective messengers for CDPHP programs within disability sectors.8 Intervening in the environment to achieve improved and equitable health outcomes Disability Advisors also provided input to the MTDH Advisory Board that organized Accessibility Ambassador Projects. The Accessibility Ambassadors increased public health partners’ capacity to conduct health promotion with populations with disabilities through social marketing activities. They also improved the accessibility of targeted sectors of community health facilities statewide by strengthening disability and health competencies of the professional workforce managing or practicing in those structures. As examples, Accessibility Ambassadors conducted an evaluation of fitness facilities using the AIMFREE evaluation tool23 and of community health centers and rural health clinics using the Massachusetts Facility Assessment Tool24 then provided recommendations for improvements with resources to support action on those recommendations. Evaluation of Accessibility Ambassador Projects showed that (1) participants appreciated the technical assistance, (2) members of all engaged workforce sectors sought training to improve their disability and health competencies, (3) actions were planned and implemented to improve access to health resources, and (4) reasonable accommodation to our funding was secured to make accessibility improvements.25e27 MTDH supported Accessibility Ambassadors to increase awareness among housing stakeholders of the need for accessible, affordable housing in Montana and of ‘‘visitability’’ as an alternative home design that could address the need if adopted widely. A visitable design includes three features: 1) at least one zero-step entrance approached by an accessible route; 2) wide passage doors; and 3) at least a half bath/powder room on the main floor (Visitability is fully defined on the Concrete Change website at this address: http://concretechange.org/visitability/visitabilitydefined/). Since 2010, Accessibility Ambassadors have presented data, model policy and practices, and personal testimonies educating at least 8,300 consumers, builders,
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architects, policy makers, and other housing stakeholders about visitability. Today, Montana is the only state in the U.S. requiring visitability, with other accessibility features, in all housing units funded through its Qualified Allocation Program, HOME Investment Partnerships Program, and Community Development Block Grant. Coordination and integration Over time, targeted activities became long lasting practice. Public health partners understood and adopted the value of equal access, and public health practitioners built organizational capacity to assure future access is provided. Then, mutually valued projects provided opportunities to coordinate public health campaigns and public health program implementation efforts. The CMT’s evaluation of these projects led to the need to develop plans to sustain these efforts. Sustainability planning has prompted MTDH partners to integrate systems, resources, and approaches. Moving from targeted activities to integration: an example MTDH coordinated with the Montana Diabetes Project to deliver the Diabetes Prevention Program (DPP) to Montanans at risk for cardiovascular disease (CVD) and/or diabetes.28e32 To increase the accessibility and inclusiveness of the program, MTDH trained Lifestyle Coaches in planning and operating accessible events, including how to select an accessible venue, how to arrange accessible communications, and how to support persons with disabilities in health behavior change. Evaluation accompanied these efforts, and beginning in 2012, Montana DPP participants were asked to self-report on four impairments during the intake interview that included a subset of the U.S. Health and Human Services Standard Demographic Disability Status items (see relevant U.S. HHS Guidance on this website at this address: http://aspe.hhs.gov/datacncl/standards/ ACA/4302/index.shtml). Of the 1,093 Montana DPP participants in 2012, one in ten (10.6%) reported at least one impairment. Mobility was the most commonly reported impairment (7.0%), and vision was the least commonly reported impairment (1.6%). Hearing and cognitive impairments were reported by equal proportions of participants (2.7%). These numbers reflect the initial success of efforts to improve the capacity of Lifestyle Coaches to include persons with disabilities in DPP. Still, in 2013, Lifestyle Coaches reported difficulty supporting individuals with specific impairments to adhere to intervention components such as the dietary record. MTDH staff adopted practices from disability service systems to serve as accommodations for program participants with low literacy skills, communication impairments, and/or cognitive impairments. These accommodations promised more equitable outcomes and are being implemented and evaluated through a research
grant aimed at increasing DPP participation of Montana Medicaid recipients (see Table 1 summarizing MTDH examples of targeted, coordinated, and integrated activities by pathways of influence). The challenge of the strategy The CDC state-based disability and health programs were created as state capacity building initiatives. There are multiple approaches to building capacity. We chose a strategy that involved integrating disability and public health systems. This integrated strategy leverages existing resources by expanding the role and scope of employees in the disability service system, the public health sector, and program and policy makers. Most programs have some slack for absorbing unexpected changes. Targeting health messages into disability services systems requires staff in those systems to have time to learn at least basic information about various health topics, to create the detailed changes (i.e., new procedures manual, new materials, new ways of explaining the program to consumers, etc.) and to implement those changes. The more content involved, the greater the effort and the more time required. While the broad strategy is clear, its implementation requires someone at the pivot e a coordinator and translator who can learn the rules of multiple systems and translate them. That person (or several people) must have time to develop personal relationships, travel broadly to maintain a visibility among the program staff in the field, and interpret actions of one system for employees in another system in a manner that is both accurate and sustainable. These interactions create opportunities for systems integration that require short-term capacity building efforts. These efforts add to the existing work, which reveals the limits of this strategy. That is, the new opportunities will only be addressed if a committed and talented professional plays the pivot point and only so long as that pivot point is maintained. Two recommendations flow from these observations. First, in planning integration strategies, relatively strict limits should be enforced on the number of different systems engaged at any one time. This protects the staff from becoming over extended. It also protects the programs from overly high expectations. Second, the pivot point is a critical role. Integration requires long term support to ensure its continuity. Agency planners and policy makers should be aware of the time commitment required in this strategy, and they should be prepared to maintain their investment over the long term. Conclusion Montana public health policy and practice have gained considerably by addressing disability. For example, conceptually, the addition of disability clarified the continuum of health outcomes e ranging from disorder through
Table 1 Examples of coordination and integration for sustainable strategies Pathways Targeted
Integration
Health educators practice accessible meeting guidelines. LWD, WWD, MENU-AIDDs.
Promote chronic disease programs through disability service Work with disability organizations to adopt chronic disease systems to consumers. programs for health equitable implementation. Chronic disease partners review materials and update content Evaluate CDPHP needs of populations with disabilities, plan, as needed. and implement comprehensive intervention(s) including those addressing secondary conditions. Assuring public health Convert materials to Braille, text formats, Involve disability community partners in implementation of Chronic disease develops public health communications that accessibility ASL, iconographic and pictorial materials campaigns (e.g., Know Stroke. Know the Signs. Act in are accessible as mandated in law and are inclusive of the and signage. Time). communication needs and preferences of populations with disability. Train on HCASPWD. Promote HCASPWD with preventive care communications Preventive care programs monitor participation of (e.g., Right To Know Campaign). populations with disabilities and health equity of program. ACSM/NCPAD Certification in Inclusive Promote training to personal trainers and fitness professionals Adopt inclusive fitness practices into chronic disease program Fitness. implementing chronic disease programs. facilitator guides and professional education programs. Increasing availability and Targeted surveillance work in disability Reviewing health status and risk behavior data for Including measures and objectives in chronic disease strategic Use of data service systems populations with disabilities with data for standard public plans driven by public health data on populations with health populations. disabilities Intervening in the environment Accessibility assessments of facilities Public Health Emergency Preparedness promotes training on State Homeland Security Grant funds support non-profit to achieve improved and providing public health programs and Department of Justice Shelter Accessibility Checklist. organizations with expertise to conduct shelter accessibility equitable health outcomes services. evaluations. Promoting accessible home design in Promoting visitable features with building code applications. Measuring health outcomes associated with visitable rehabilitation process residence among populations with disability.36 Organizing disability advocacy Public health planning meetings and materials Chronic disease strategic plans are reviewed by disability Disability advocates are involved in the implementation of are accessible. advocates. chronic disease strategic plans. Conduct public health advocacy skill training Public health policy forums review disability-related aspects Disability advocates develop rationale for policy and for populations with disabilities through CILs of rationale for policy work (e.g., smoke free, complete recommendations for improving policies for people with streets, active transportation). disabilities.
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Building capacity with disability service agencies
Coordination
LWD, Living Well with a Disability; WWD, Working Well with a Disability; MENU-AIDDs, Materials for Supporting Nutrition and Education with Adults with Intellectual or Developmental Disabilities; CDPHP, Chronic Disease Prevention and Health Promotion; ASL, American Sign Language; HCASPWD, Health Care Advocacy Skills for Persons with Disabilities; ACSM/NCPAD, American College of Sports Medicine/National Center on Physical Activity and Disability; CILs, Centers for Independent Living.
23
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impairment and functional limitation to disability.13 Conceptual clarification has led to state health improvement plans that are more inclusive of the disability community in Montana and better address the health concerns of Montanans with disability. Programmatically, disability added service and support systems that enhance individuals’ resilience to life events that produce impairment, functional limitation, and disability. This is especially true in Montana, a rural state where limited human service resources are strategically distributed statewide through disability service systems. Practically, the Montana Disability and Health Program brought new partners to the traditional work of public health. Yet, addressing disability issues has also presented challenges to the public heath structure33e35 (e.g., how to provide local accessible health care to people with disabilities given the current structure and resource array in the state). One pathway for expanding access to public health services for Montanans with disabilities has been to develop and deliver programs and services specifically tailored to the needs of people with disabilities (e.g., LWD). In return for being included at the policy table and on the ground in service delivery, disability advocates and rehabilitation service providers have taken the message of health to those who experience disability and have strengthened the efforts of public health partners to do the same. The strategy of integrating disability and public health systems is consistent with Section 504 of the Rehabilitation Act and the Americans with Disabilities Act and integrates the social justice values of the disability movement into health promotion. Finally, this strategy maintains Montana’s health promotion capacity so that other states can build similar partnerships that lead to other coordination and integration initiatives that could benefit Montanans with disabilities. While there are clearly advantages to this strategy, to sustain these benefits over time, the state lead agency must have the capacity to conduct targeted activities and the flexibility to organize resources to support coordinated and integrated activities when partners are ready to address public health priorities in new ways.
References 1. National Council on Disability. Toward Independence. Washington, DC: National Council on Disability; 1986. 2. Pope AM, Tarlov AR, eds. Disability in America: Toward a National Agenda for Prevention. Washington, DC: National Academies Press; 1991. 3. Brandt EN, Pope AM, eds. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: National Academies Press; 1997. 4. Krahn G, Campbell V. Evolving views of disability and public health: the roles of advocacy and public health. Disabil Health J. 2011;4: 12e18. 5. Rimmer J. Building a future in disability and public health. Disabil Health J. 2011;4:12e18.
6. Garrity J, Traci M, Seekins T. The Montana Disability and Health Strategic Plan. Missoula, MT: The University of Montana Rural Institute; 2011. 7. White G, Gutierrez R, Seekins T. Preventing and managing secondary conditions: a proposed role for independent living centers. J Rehabil. 1996;62(3):14e21. 8. Traci MA, Seekins T. Using participatory action research to promote self-advocacy and self-determination of people with disabilities: consumer involvement in shaping Montana state and local public health policy and practice. National Gateway to Self-determination. 2011;1:27e32. 9. Ravesloot C, Seekins T, White G. Living Well with a Disability health promotion intervention: improved health status for consumers and lower costs for health care policymakers. Rehabil Psychol. 2005;50(3):239e245. 10. Institute of Medicine of the National Academies. The Future of Public Health. Washington, DC: National Academies Press; 1988. 11. Institute of Medicine of the National Academies. Who Will Keep the Public Healthy: Educating Public Health Professionals for the 21st Century. Washington, DC: National Academies Press; 2003. 12. World Health Organization. International Classification of Impairments, Disabilities, and Handicaps: ICIDH. Geneva, Switzerland: Author; 1998. 13. World Health Organization. International Classification of Functioning, Disability and Health: ICF. Geneva, Switzerland: Author; 2001. 14. AHRQ. Creating Partnerships, Improving Health: The Role of Community-based Participatory Research. Rockville, MD: U.S. Department of Health and Human Services Agency for Healthcare Research and Quality (AHRQ); 2003. 15. Seekins T, Clay JA, Ravesloot C. A descriptive study of secondary conditions reported by a population of adults with physical disabilities served by three independent living centers in a rural state. J Rehabil. 1994;60:47e51. 16. Seekins T, Smith N, McCleary T, Clay J, Walsh J. Secondary disability prevention: involving consumers in the development of policy and program options. J Disabil Policy Stud. 1991;1(3):21e35. 17. Traci M, Seekins T, Szalda-Petree A, Ravesloot C. Assessing secondary conditions among adults with developmental disabilities: a preliminary study. Ment Retard. 2002;40(2):119e131. 18. Humphries K, Traci M, Seekins T. A preliminary assessment of the nutrition and food-system environment of adults with intellectual disabilities living in supported arrangements in the community. Ecol Food Nutr. 2004;43(6):517e532. 19. Seekins T, Traci M, Cummings SJ, Oreskovich J, Ravesloot C. Assessing environmental factors that affect disability: establishing a baseline of visitability in a rural state. Rehabil Psychol. 2008;53(1):80e84. 20. Humphries K, Pepper A, Traci M, Olson J, Seekins T. Nutritional intervention improves menu adequacy in group homes for adults with intellectual or developmental disabilities. Disabil Health J. 2009;2: 136e144. 21. Humphries, K, Pepper, AC, Traci, M, & Seekins, T. Nutrition intervention improves weight status and gastrointestinal function in community-dwelling adults with intellectual or developmental disabilities. 2013 [Manuscript under review]. 22. Humphries, K, Pepper, AC, Traci, M, & Seekins, T. Community-based nutrition intervention improves the dietary intake of adults with intellectual or developmental disabilities. 2013 [Manuscript under review]. 23. Rimmer JH, Riley B, Wang E, Rauworth A. Development and validation of AIMFREE: accessibility instruments measuring fitness and recreation environments. Disabil Rehabil. 2004;26:1087e1095. 24. Massachusetts Department of Public Health Office on Health and Disability. Massachusetts Facility Assessment Tool. Boston: Commonwealth of Massachusetts Department of Public Health; 2009. 25. Traci M, Cowan B. Accessibility under the big sky. Community Psychol. 2005;38(1):34e37. 26. Traci M, Goe R, Horan H, Plant K, Hughes R, Powell K. Improving the Capacity of State Mammography Centers to Provide Accessible
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27.
28.
29.
30.
Mammography to Persons With Disabilities: Results of an Education and Awareness Project. Missoula, Montana: The University of Montana Rural Institute; 2012. Traci MA, Backs D, Spangler B, Seekins T, Rauworth A. Accessibility Ambassador Assessments of Fitness Centers in a Rural State: Identifying Physical Activity Options and Barriers for People With Physical Disabilities. Missoula, MT: The University of Montana Rural Institute; 2012. Amundson HA, Butcher MK, Gohdes D, et al. Translating the diabetes prevention program into practice in the general community findings from the Montana Cardiovascular Disease and Diabetes Prevention Program. Diabetes Educ. 2009;35(2):209e223. Butcher MK, Vanderwood KK, Hall TO, Gohdes D, Helgerson SD, Harwell TS. Capacity of diabetes education programs to provide both diabetes self-management education and to implement diabetes prevention services. J Public Health Manag Pract. 2011;17(3):242e247. Reddy P, Hernan AL, Vanderwood KK, et al. Implementation of diabetes prevention programs in rural areas: Montana and south-eastern Australia compared. Aust J Rural Health. 2011;19(3):125e134.
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31. Vanderwood KK, Hall TO, Harwell TS, Butcher MK, Helgerson SD. Implementing a state-based cardiovascular disease and diabetes prevention program. Diabetes Care. 2010;33(12):2543e2545. 32. Harwell TS, Vanderwood KK, Hall TO, Butcher MK, Helgerson SD. Factors associated with achieving a weight loss goal among participants in an adapted Diabetes Prevention Program. Prim Care Diabetes. 2011;5(2):125e129. 33. Krahn G, Fujiura G, Drum CE, Cardinal BJ, Nosek MA. The dilemma of measuring perceived health status in the context of disability. Disabil Health J. 2009;2(2):49e56. 34. Iezzoni LI. Public health goals for persons with disabilities: looking ahead to 2020. Disabil Health J. 2009;2(3):111e115. 35. McDermott S, Turk MA. The myth and reality of disability prevalence: measuring disability for research and service. Disabil Health J. 2011;4(1):1e5. 36. U.S. DHHS, Office of Disease Prevention and Health Promotion. Healthy People 2020. Washington, DC. Available at: http://www. healthypeople.gov/2020/default.aspx; 2010. Accessed 20.04.12.
Commentary: Chronic Conditions and Disability
Integration of chronic disease and disability and health state programs in Montana Meg Traci, Ph.D.*, and Tom Seekins, Ph.D. The University of Montana Rural Institute, Missoula, MT, USA
Abstract This paper describes the strategies used in one state, Montana, to improve the health of individuals at risk for or living with chronic conditions associated with disability. These strategies demonstrate capacity to intervene at individual and environmental levels, and reveal opportunities for public health professionals to collaborate with independent living and long term care partners. In this paper we attempt to outline some of the challenges inherent in these collaborations and suggest strategies to overcome them. Ó 2014 Elsevier Inc. All rights reserved. Keywords: Chronic conditions; Chronic disease; Disability; Environment; State public health program
The National Council on Disability (NCD) established the goal of improving the health of people with disability in its 1986 report, Toward Independence.1 The NCD worked with Congress to establish a program within the Center for Environmental Health and Injury Control at the Centers for Disease Control and Prevention (CDC). In doing so, they ushered in an era in which disability emerged as a significant issue in public health. That program initiated research to develop evidence-based interventions and funded several state programs to demonstrate the delivery of accessible health promotion programs and services. Pope and Tarlov2 and Brandt and Pope3 advanced the agenda significantly by assembling data on disability and by providing conceptual models that emphasized the environmental contribution to the experience of disability in two Institute of Medicine reports. They described the mechanisms by which impairments might lead to functional limitations, and those might lead to disability. They also described the ways that other health conditions (secondary conditions or co-morbidities) might contribute to increasing
This work was supported by CDC grant 1U59DD000991 from the Centers for Disease Control Prevention. The authors have no financial disclosures to report. Portions of this work were previously presented at the Disability Chair’s Forum at the meetings of the American Public Health Association, October 28, 2012, San Francisco, California. * Corresponding author. E-mail address: [email protected] or matraci@ruralinstitute. umt.edu (M. Traci). 1936-6574/$ - see front matter Ó 2014 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.dhjo.2013.10.006
the disability expected from the primary disability diagnosis alone. Researchers, policy makers, and state-based providers developed four primary strategies to address these factors, including (1) segregated servicesddelivering services designed for people with disability and the issues they faced, (2) public health servicesddelivering health promotion designed for the general population to people with disabilities, (3) environmental initiativesdpromoting the use of universal design to the built environment in ways that promoted participation and health for everyone, and (4) policy and systems change workdemploying advocacy techniques that promoted access to the first three.4e6 While these strategies were common across states, each state differed in how they were implemented. The remainder of this paper describes the approaches taken in one state, Montana.
Montana Montana’s involvement in the disability and health movement began in 1988 when the CDC awarded the University of Montana (UM) a research grant to assess secondary conditions experienced by people with disabilities and to explore the feasibility of a health promotion intervention delivered by centers for independent living (CILs). In 2002, CDC awarded a state capacity building grant to a partnership between UM and the Montana Department of Public Health and Human Services (DPHHS) to implement the Montana Disability and Health Program (MTDH). The goal of the state-based capacity building program was to create a
20
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comprehensive program of disability and health by integrating health promotion into disability systems and integrating disability issues into public health systems. University of Montana faculty’s participatory action research involved the systems, constituencies, science and values of independent living,7 citizen advocacy,8 and health promotion.9 It provided a framework, established a reputation among essential partners, and built capacity with those partners for organizing the Montana Disability and Health Program. First, we address the lessons learned from our research. Second, we describe how we collaborated to organize the MTDH program and the lessons learned from our capacity building efforts. Finally, we comment about the prospects for the future. Background We chose an independent living perspective and chose to work primarily with those disability organizations that shared that view. Many CILs were leery of close involvement with the medical field. To overcome those concerns, we emphasized the compatibility of the public health model10,11 with the New Paradigm of Disability.2,3,12e14 Specifically, public health and CILs share values that include (1) a view of health as not the equivalent to medicine but an outcome with several paths, (2) a belief in the possibility of recovery of societal participation after an acquired impairment(s), (3) a value for choice and for self-management of health, (4) a basic understanding of the role of the environment in determining outcome(s), and (5) a strong role for advocacy in promoting access to and the advancement of technologies to support health and participation. We also involved persons with disabilities to define secondary conditions, conduct surveillance activities, interpret the findings, and design the intervention.15e18 Their involvement expanded the focus of the assessment from the prevalence of diagnosed conditions to include limitation in participation due to secondary conditions, expanded the range of conditions found in the scientific literature to include consumer-oriented issues such as accessibility to community resources, and changed the original intervention design to include advocacy components for improving the community environment to facilitate participation. Those experiences and new tools, along with previous experience and tools from the independent living movement shaped the character of the Montana state-based program (MTDH).
Montana Disability and Health State Based Program Organizationally, MTDH was guided by a Core Management Team (CMT) composed of staff of the UM Rural Institute and representatives of the DPHHS. The longterm goal was to (1) improve the health of individuals with disabilities, (2) prevent and manage secondary conditions,
and (3) eliminate health disparities experienced by people with disabilities. Over 10 years, we conducted a series of projects to build familiarity among disability agencies and public health providers. Those projects e targeted activities e provided the opportunity for both sectors to see common elements in their values, vision, and strategies of health promotion as accessible to and equally effective for populations with disabilities. We proposed to follow five pathways to improve the health of Montanans, including: (1) increasing the availability and use of data describing the health status and behaviors of populations with disabilities for policy and program development, (2) building the capacity of disability service agencies to deliver health promotion designed for people with disabilities, (3) assuring that public health communications and education investments are accessible to and effective in populations with disability, (4) organizing disability advocacy to support sustained system improvements, and (5) intervening in the environment to achieve improved and equitable health outcomes.
Increasing availability and use of disability data At first, our academic research partners provided unique data that set the occasion for extensive discussions about disability and public health. To expand these discussions, the State BRFSS Epidemiologist integrated the disability identifier as a standard demographic variable into all analyses and data summary templates as an addition to other standard demographic variables (e.g., gender, race and ethnicity). This means, at minimum, that the health and health risk profiles of adult Montanans with disability are examined at the same time and by the same groups that examine the profiles of other subpopulations of adult Montanans. This practice frees MTDH resources from data analysis and facilitates a focus on the integration of disability partners in public health improvement efforts including addressing new public health data needs. For example, in 2004, the academic research team used the Behavioral Risk Factor Surveillance System (BRFSS) to establish a baseline of visitability in Montana.19
Building capacity with disability service agencies MTDH, the state-based program, provided training to CIL staff to deliver the Living Well with a Disability (LWD) program. Between February 1995 and April 2013, we trained 113 local program facilitators in Montana, and these facilitators served more than 900 adults with disabilities. On the basis of data from our original randomized effectiveness study, we project that each program participant experiences a total increase of 11.9 symptom free days per six months. In addition, we estimate that the program saves third party health insurers between $846,000 and $1.4 million dollars.
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We also provided training and technical assistance to the State’s residential service providers in the use of nutritional best practices and, eventually, Materials for Supporting Nutrition and Education with Adults with Intellectual or Developmental Disabilities (MENU-AIDDS).20 Between September 2006 and April 2013, a total of 160 group homes in 29 communities in Montana adopted the program. As such, MENU-AIDDS serves approximately 800 adults with intellectual and developmental disabilities three times each day, all year long. Evaluation showed significant improvements in homes that used core MENU-AIDDS components (planned menus and monitored residents’ dietary intake, body weight, and gastrointestinal function).20e22 Assuring public health accessibility Public health programs are covered by Section 504 of the Rehabilitation Act and by the Americans with Disabilities Act (ADA). Adherence to these laws means that all program facilities must meet accessibility guidelines for architectural space, and that programs and services must provide reasonable accommodations including health education print materials in accessible alternative formats. Through a brief ADA survey of Montana county health departments, the MTDH Core Management Team learned that many programs had difficulty providing printed and on-line program materials in alternative formats. MTDH supported Chronic Disease Prevention and Health Promotion (CDPHP) programs’ dissemination of alternative formats in public health campaigns, health promotion programs, and strategic plan implementations by providing consultation on the development of publications, conversion of regular print materials, and placement tactics to increase awareness among populations needing alternative formats. Organizing disability advocacy We proposed to employ various advocacy techniques to promote increased health and community participation by people with disabilities. One mechanism for this final strategy was to get people who experienced disability appointed to standing public health committees. With disability service agencies conducting evidence-based health promotion, there were disability advocates (e.g., LWD graduates) to represent the health promotion needs of populations with disabilities to public health partners. MTDH recruited, trained, and supported disability selfadvocates to serve on primary advisory councils and committees. In 2002, the state public health division placed people with disabilities on each CDPHP program citizen advisory committee. These committee members constituted the MTDH Disability Advisors program. Since 2003, MTDH has recruited, trained and supported 23 Disability Advisors to serve on 15 state-level public health standing committees. Today, MTDH supports six Disability Advisors who serve on five public health committees guiding programs in the
21
Chronic Disease Prevention and Health Promotion Bureau. Many more CIL staff and peer advocates act in the capacity of a ‘‘disability advisor,’’ serving locally on county-level public health committees without direct MTDH support. Initial Disability Advisors activities began with targeted education activities to increase awareness among public health partners of the civil rights of persons with disabilities. A sentinel outcome of this education was the adoption of accessible meeting guidelines for public health standing committees and the fulfillment of accommodation needs of Disability Advisors. The advisors were successful in developing public health data and reports as well as programs and strategic plans that were more inclusive of populations with disabilities. They were also effective messengers for CDPHP programs within disability sectors.8 Intervening in the environment to achieve improved and equitable health outcomes Disability Advisors also provided input to the MTDH Advisory Board that organized Accessibility Ambassador Projects. The Accessibility Ambassadors increased public health partners’ capacity to conduct health promotion with populations with disabilities through social marketing activities. They also improved the accessibility of targeted sectors of community health facilities statewide by strengthening disability and health competencies of the professional workforce managing or practicing in those structures. As examples, Accessibility Ambassadors conducted an evaluation of fitness facilities using the AIMFREE evaluation tool23 and of community health centers and rural health clinics using the Massachusetts Facility Assessment Tool24 then provided recommendations for improvements with resources to support action on those recommendations. Evaluation of Accessibility Ambassador Projects showed that (1) participants appreciated the technical assistance, (2) members of all engaged workforce sectors sought training to improve their disability and health competencies, (3) actions were planned and implemented to improve access to health resources, and (4) reasonable accommodation to our funding was secured to make accessibility improvements.25e27 MTDH supported Accessibility Ambassadors to increase awareness among housing stakeholders of the need for accessible, affordable housing in Montana and of ‘‘visitability’’ as an alternative home design that could address the need if adopted widely. A visitable design includes three features: 1) at least one zero-step entrance approached by an accessible route; 2) wide passage doors; and 3) at least a half bath/powder room on the main floor (Visitability is fully defined on the Concrete Change website at this address: http://concretechange.org/visitability/visitabilitydefined/). Since 2010, Accessibility Ambassadors have presented data, model policy and practices, and personal testimonies educating at least 8,300 consumers, builders,
22
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architects, policy makers, and other housing stakeholders about visitability. Today, Montana is the only state in the U.S. requiring visitability, with other accessibility features, in all housing units funded through its Qualified Allocation Program, HOME Investment Partnerships Program, and Community Development Block Grant. Coordination and integration Over time, targeted activities became long lasting practice. Public health partners understood and adopted the value of equal access, and public health practitioners built organizational capacity to assure future access is provided. Then, mutually valued projects provided opportunities to coordinate public health campaigns and public health program implementation efforts. The CMT’s evaluation of these projects led to the need to develop plans to sustain these efforts. Sustainability planning has prompted MTDH partners to integrate systems, resources, and approaches. Moving from targeted activities to integration: an example MTDH coordinated with the Montana Diabetes Project to deliver the Diabetes Prevention Program (DPP) to Montanans at risk for cardiovascular disease (CVD) and/or diabetes.28e32 To increase the accessibility and inclusiveness of the program, MTDH trained Lifestyle Coaches in planning and operating accessible events, including how to select an accessible venue, how to arrange accessible communications, and how to support persons with disabilities in health behavior change. Evaluation accompanied these efforts, and beginning in 2012, Montana DPP participants were asked to self-report on four impairments during the intake interview that included a subset of the U.S. Health and Human Services Standard Demographic Disability Status items (see relevant U.S. HHS Guidance on this website at this address: http://aspe.hhs.gov/datacncl/standards/ ACA/4302/index.shtml). Of the 1,093 Montana DPP participants in 2012, one in ten (10.6%) reported at least one impairment. Mobility was the most commonly reported impairment (7.0%), and vision was the least commonly reported impairment (1.6%). Hearing and cognitive impairments were reported by equal proportions of participants (2.7%). These numbers reflect the initial success of efforts to improve the capacity of Lifestyle Coaches to include persons with disabilities in DPP. Still, in 2013, Lifestyle Coaches reported difficulty supporting individuals with specific impairments to adhere to intervention components such as the dietary record. MTDH staff adopted practices from disability service systems to serve as accommodations for program participants with low literacy skills, communication impairments, and/or cognitive impairments. These accommodations promised more equitable outcomes and are being implemented and evaluated through a research
grant aimed at increasing DPP participation of Montana Medicaid recipients (see Table 1 summarizing MTDH examples of targeted, coordinated, and integrated activities by pathways of influence). The challenge of the strategy The CDC state-based disability and health programs were created as state capacity building initiatives. There are multiple approaches to building capacity. We chose a strategy that involved integrating disability and public health systems. This integrated strategy leverages existing resources by expanding the role and scope of employees in the disability service system, the public health sector, and program and policy makers. Most programs have some slack for absorbing unexpected changes. Targeting health messages into disability services systems requires staff in those systems to have time to learn at least basic information about various health topics, to create the detailed changes (i.e., new procedures manual, new materials, new ways of explaining the program to consumers, etc.) and to implement those changes. The more content involved, the greater the effort and the more time required. While the broad strategy is clear, its implementation requires someone at the pivot e a coordinator and translator who can learn the rules of multiple systems and translate them. That person (or several people) must have time to develop personal relationships, travel broadly to maintain a visibility among the program staff in the field, and interpret actions of one system for employees in another system in a manner that is both accurate and sustainable. These interactions create opportunities for systems integration that require short-term capacity building efforts. These efforts add to the existing work, which reveals the limits of this strategy. That is, the new opportunities will only be addressed if a committed and talented professional plays the pivot point and only so long as that pivot point is maintained. Two recommendations flow from these observations. First, in planning integration strategies, relatively strict limits should be enforced on the number of different systems engaged at any one time. This protects the staff from becoming over extended. It also protects the programs from overly high expectations. Second, the pivot point is a critical role. Integration requires long term support to ensure its continuity. Agency planners and policy makers should be aware of the time commitment required in this strategy, and they should be prepared to maintain their investment over the long term. Conclusion Montana public health policy and practice have gained considerably by addressing disability. For example, conceptually, the addition of disability clarified the continuum of health outcomes e ranging from disorder through
Table 1 Examples of coordination and integration for sustainable strategies Pathways Targeted
Integration
Health educators practice accessible meeting guidelines. LWD, WWD, MENU-AIDDs.
Promote chronic disease programs through disability service Work with disability organizations to adopt chronic disease systems to consumers. programs for health equitable implementation. Chronic disease partners review materials and update content Evaluate CDPHP needs of populations with disabilities, plan, as needed. and implement comprehensive intervention(s) including those addressing secondary conditions. Assuring public health Convert materials to Braille, text formats, Involve disability community partners in implementation of Chronic disease develops public health communications that accessibility ASL, iconographic and pictorial materials campaigns (e.g., Know Stroke. Know the Signs. Act in are accessible as mandated in law and are inclusive of the and signage. Time). communication needs and preferences of populations with disability. Train on HCASPWD. Promote HCASPWD with preventive care communications Preventive care programs monitor participation of (e.g., Right To Know Campaign). populations with disabilities and health equity of program. ACSM/NCPAD Certification in Inclusive Promote training to personal trainers and fitness professionals Adopt inclusive fitness practices into chronic disease program Fitness. implementing chronic disease programs. facilitator guides and professional education programs. Increasing availability and Targeted surveillance work in disability Reviewing health status and risk behavior data for Including measures and objectives in chronic disease strategic Use of data service systems populations with disabilities with data for standard public plans driven by public health data on populations with health populations. disabilities Intervening in the environment Accessibility assessments of facilities Public Health Emergency Preparedness promotes training on State Homeland Security Grant funds support non-profit to achieve improved and providing public health programs and Department of Justice Shelter Accessibility Checklist. organizations with expertise to conduct shelter accessibility equitable health outcomes services. evaluations. Promoting accessible home design in Promoting visitable features with building code applications. Measuring health outcomes associated with visitable rehabilitation process residence among populations with disability.36 Organizing disability advocacy Public health planning meetings and materials Chronic disease strategic plans are reviewed by disability Disability advocates are involved in the implementation of are accessible. advocates. chronic disease strategic plans. Conduct public health advocacy skill training Public health policy forums review disability-related aspects Disability advocates develop rationale for policy and for populations with disabilities through CILs of rationale for policy work (e.g., smoke free, complete recommendations for improving policies for people with streets, active transportation). disabilities.
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Building capacity with disability service agencies
Coordination
LWD, Living Well with a Disability; WWD, Working Well with a Disability; MENU-AIDDs, Materials for Supporting Nutrition and Education with Adults with Intellectual or Developmental Disabilities; CDPHP, Chronic Disease Prevention and Health Promotion; ASL, American Sign Language; HCASPWD, Health Care Advocacy Skills for Persons with Disabilities; ACSM/NCPAD, American College of Sports Medicine/National Center on Physical Activity and Disability; CILs, Centers for Independent Living.
23
24
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impairment and functional limitation to disability.13 Conceptual clarification has led to state health improvement plans that are more inclusive of the disability community in Montana and better address the health concerns of Montanans with disability. Programmatically, disability added service and support systems that enhance individuals’ resilience to life events that produce impairment, functional limitation, and disability. This is especially true in Montana, a rural state where limited human service resources are strategically distributed statewide through disability service systems. Practically, the Montana Disability and Health Program brought new partners to the traditional work of public health. Yet, addressing disability issues has also presented challenges to the public heath structure33e35 (e.g., how to provide local accessible health care to people with disabilities given the current structure and resource array in the state). One pathway for expanding access to public health services for Montanans with disabilities has been to develop and deliver programs and services specifically tailored to the needs of people with disabilities (e.g., LWD). In return for being included at the policy table and on the ground in service delivery, disability advocates and rehabilitation service providers have taken the message of health to those who experience disability and have strengthened the efforts of public health partners to do the same. The strategy of integrating disability and public health systems is consistent with Section 504 of the Rehabilitation Act and the Americans with Disabilities Act and integrates the social justice values of the disability movement into health promotion. Finally, this strategy maintains Montana’s health promotion capacity so that other states can build similar partnerships that lead to other coordination and integration initiatives that could benefit Montanans with disabilities. While there are clearly advantages to this strategy, to sustain these benefits over time, the state lead agency must have the capacity to conduct targeted activities and the flexibility to organize resources to support coordinated and integrated activities when partners are ready to address public health priorities in new ways.
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