Jane Evans Gay, RN BSN
Iowa Program for Assistive Technology University of Iowa
Written as a part of:
A Blueprint for Action: The Second National Working Conference on Home Modifications Policy
April 22-23, 1996
"Too often older or disabled people live limited lives or give up their homes and neighborhoods prematurely because standard housing of the past cannot meet their needs."
R. L. Mace, Architect and Project Designer
Home modifications not only have the potential to increase an individuals independence while decreasing the needs of caregivers and community support programs, but they may also prove to be more cost-effective in many cases (Barnes, 1996). Unfortunately, the benefits of home modification information and services remain inaccessible to most of the elderly and persons with disabilities due to many problems within the home modifications delivery system. There is a growing gap between the need for home modifications and flexibility of the housing industry to meet the need for home modifications. There is also a need for additional supporting policies, public awareness and funding sources (Wilner, 1994).
This paper focuses on systems change. Three major issues related to home modifications need to be addressed through systems change: awareness, service delivery and funding policies. Systems change is a planned process that coordinates a variety of strategies to permanently alter the provision and funding of home modifications and services. To achieve systems change, coalitions will need to be built including persons with disabilities, the elderly and a diverse group of other stakeholders. Through collaborative efforts, the home modification system can be changed to effectively and appropriately provide services across all ages and disability types.
Systems change is a process which strives to permanently change a system, in this case the home modification delivery system. The Technology-Related Assistance for Individuals With Disabilities Act Amendments of 1994 provides a useful and thorough definition for systems change, although for the purposes of this discussion the word assistive technology can be replaced with home modifications. The term systems change and advocacy initiative means efforts that result in laws, regulations, policies, practices or organizational structures that promote consumer-responsive programs or entities and that or, assistive technology devices and services on a permanent basis, in order to empower individuals with disabilities to achieve greater independence, productivity, and integration and inclusion within the community and the workforce.
Simply stated, systems change is a process which simultaneously involves and is directed at a variety of consumers and stakeholders, service delivery providers and systems, and policies (local, state and national). Consumer awareness, the service delivery system, and policies are separate issues each requiring distinct strategies. However, if the overall home modification system is to be changed, the process of how these distinct strategies occur is equally important.
Because the issues related to home modifications (awareness, service delivery, and policies) are extremely intertwined, focusing on only one of the issues will not create permanent change in the system. Consumers and service providers must be aware of the benefits of home modifications before they will use them. Raising such awareness of home modifications will not help if the service delivery system is not ready to provide appropriate services or if there are not adequate funding options available. Without increased consumers demand the need for home modifications will not be identified and needed changes in services, training, staffing, policies and practices will not occur. Currently service providers and agencies must work within existing policies and regulations, and if adequate funding is available.
If consumers and service providers do not request additional home modification services and funding, policy makers will not identify them as an unmet need or priority area that requires changes in policies, regulations, procedures and practices, and budgets. Moreover, changes in policies will not automatically increase consumer awareness and request for service, or improve the capacity of the home modification service delivery system. Consequently, strategies must be developed to address each issue if systems change is to occur.
Strategies for these issues must be coordinated within a well thought-out implementation plan. The timing and sequence of strategies should be determined by feasibility, potential impact and problems, and the current environment within which the system is working. Some strategies will be easier to accomplish because the necessary research, model programs, or project materials already exist. For example, there are several elements in place that would suggest that an awareness campaign for the aging population would be feasible to implement and therefore might be one of the initial systems change strategies to implement. The American Association of Retired Persons (AARP) and the American Occupational Therapy Association (AOTA) have both developed videos which demonstrate the advantages of using home modifications for older persons. They can easily and quickly be distributed through several existing national education of systems: the Area Agencies on Aging, AARP, and State Cooperative Extension Services. On the other hand, although training for contractors and home builders is greatly needed, it may need to wait until several intrinsic problems are resolved. First, contractors need to be aware of home modifications and understand their economic potential before they will invest their time and or resources in training. This means that consumers and service providers need to be aware of, request and pay for home modifications and services. Second, the National or Regional Training Centers need to identify and develop feasible and cost-effective methods to disseminate their training programs across the nation to local audiences. The appropriate timing for training may be further related to investment and development of the telecommunications infrastructure so existing training programs can be delivered via fiber optic systems or the World Wide Web. Planning systems change strategies must also include the geographic and/or political environments in which the system is operating. For example, rural areas continue to suffer from a lack of health and rehabilitation service providers, including tradespersons to carry out home modifications. It is common for rural populations to access a broad spectrum of available generic service providers, even though these advisors are unlikely to have the required knowledge (Proctor, 1992). Strategies directed at increasing the capacity to provide home modifications must work with the available resources and service providers of an area. Finally, the current political environment suggests that there is an urgency to make national and state policy makers aware of the importance of home modifications and services as cost-effective interventions for all disability types, ages and geographic settings.
SYSTEMS CHANGE STRATEGY SELECTION
Within the systems change process each component will have strategies and solutions which are both generic and unique to disability type, age, and geographic setting. For example, a generic home modification training for contractors and home builders could be developed which is tailored to rural areas or densely populated urban settings. Similarly, awareness programs must utilize effective information dissemination strategies which target specific audiences, (e.g., rural, urban, elderly and their families, children with disabilities and their families, adults with disabilities or chronic illness, a variety of service providers, policy makers and funding sources, and potential private sector entities). As national systems change strategies are developed or recommended, it will be important to distinguish which strategies can be effectively carried out at the national, state or local level, and which need to encompass the differences in disability type, age, or geographical setting.
Emerging changes in the healthcare and welfare systems make it an appropriate time for aging and disability organizations to advance both common agendas and policies. There are many common needs and interests, service providers, and funding issues that are priorities for both groups. If the system is to be changed, it will be important to focus on how similar issues affect the majority of potential consumers of home modification service rather than on the less significant differences. It will also be vital that the disability community and the elderly present a unified front for policies that support a range of options for living independently and working in the community.
Unfortunately, an environment exists which nurtures separatism between not only persons with disabilities and the elderly, but also between persons with different disabilities. Access to rehabilitation and assistive technology services is restricted because of the traditional medical-model of service delivery used by health and rehabilitation services and the resulting reimbursement guidelines (Oktay, 1985). When limited services and funding are provided based on the medical-model, it produces competition between disability groups and the aging for limited resources. This in turn has produced an extensive network of disability specific organizations and service groups which advocate or lobby for policies and seek private funds for research, services or equipment that serve their own specific disability or age group. Even among persons with disabilities, it is common to have negative feelings about other disabilities and to use isolating group definitions. Lathrop (1996) concludes that the widespread prevalence of these feelings, combined with a reluctance to confront them, keeps disabled people as a group from fighting for their rights, or from even defending the rights they already have. In any coalition it comes down to weighing the benefits against the disadvantages of joining efforts with another group.
Now is the time for a very thorough discussion within and among all disability and elderly organizations of the pros and cons of uniting in a coalition (Breedon, 1992). Each group experiences the similar problems relating to lack of awareness, inadequate service delivery system and insufficient funding options. Although information sources and funding options vary, at the community level, the home modifications delivery service is the same for all populations. The main differences arise in priorities,language, and funding issues. These differences diminish or disappear completely when service provision and funding are based on functional limitations and supporting independent living in community settings instead of the divisive medical-model criteria. The elderly can bring to this coalition: a large population, well established regional and state advocacy/training/service networks through the Area Agencies on Aging and AARP, and a strong and experienced political machine. The disability communities can bring: independent living concepts and experience, self-advocacy skills and the political alliance that negotiated the ADA. Mutually, they pull together a large comprehensive coalition that includes immediate and extended families, friends and neighbors, service providers and agencies, co-workers and classmates, advocacy organizations, potential tradespersons and private enterprises, and community entities like churches and service groups.
No one consumer or organization can accomplish systems change alone. To implement short-term strategies that create long-term system changes, all of the above individuals and organizations are going to have to build a coalition. Bringing together the large and diverse group of stakeholders mentioned above, combining their resources, and challenging their minds to look at problems in new ways, is key to resolving home modification system change.
Collaboration is a process that gets people to work together in new ways (Winer, 1994). Because collaboration is vital to the systems change process, it is important that all stakeholders enter the process with a clear understanding of what collaboration is and how it is accomplished. Winer (1994) describes collaboration as an intense process that involves considerable trust, time and effort. As discussed earlier, elderly and disability groups have not traditionally worked together or developed a trusting relationship. The result often has been the establishment of separate and unequal service delivery systems and funding mechanisms. Likewise, the service delivery agencies (local, state and national) have not traditionally worked together to reach mutual goals. Gugerty (1994) believes that an important step in building inter-agency relationships is acknowledging fears and history. He also argues that good communication skills, mutual respect and a can-do attitude are essential to working together. Only then can new mutual goals be identified and achieved.
The term mutual is very important to the collaborative process. Each stakeholder or agency partner in the collaboration must agree and then fully support the goal. This means a common language must be used which is inclusive, and each stakeholder or agency partner needs to understand how the goal benefits them specifically. An example of a mutual goal that is inclusive would be "to advocate for policies which fund home modifications and services for persons regardless of where on the age or disability spectrum an individual happens to be" (Breedon, 1992). By eliminating the use of criteria based on specific disability types, severity or ages, and including home modifications and services, all stakeholders can see how this policy directly benefits them.
The process of collaboration has many stages, each with its own set of challenges and problems. A complete explanation or discussion is not within the scope of this paper. Both new and experienced stakeholders should take the time to study and understand the collaboration process. The following chart is a very brief outline of the collaboration process which should serve as an introduction for the reader.
Stages of Collaboration
This brief outline demonstrates why collaboration requires considerable time and effort, but the results can be directly proportional to the effort and time involved.
Unfortunately, the current political environment makes it very difficult for a coalition of elderly and disability groups to be formed and/or to carry out collaborative efforts for systems change in the home modification system. Many stakeholders are already absorbed in a battle to maintain what limited resources are available through healthcare or welfare policies. Because many decisions are being made quickly at the federal and state levels, an extended period of time is not available to bring the organizations together, develop trust and mutual goals through a comprehensive coalition building and collaboration process. The groups will need to compress the process and work in good faith with each other on basic mutual goals. It may be hard to resist breaking into separate factions if policies are developed which support services and funding based on the old medical model that rations services based on age, disability type or severity. At a later time, when possible, the coalition can work more fully on the collaboration process as it continues with the less urgent or long-term systems change strategies.
Stakeholders and coalitions need to be aware of what the national and state discussions are about so appropriate and persuasive arguments can be made. Current discussions revolve around decreasing high healthcare costs and reforming welfare by returning responsibility to the states through state block grants. Clearly, within these discussions home modifications and services must be presented as cost-effective interventions. State block grants have the potential of creating a new effective system of service delivery and funding, but this opportunity will be missed if stakeholders are not at the table with supporting data when the discussion occur.
A nation-level stakeholder coalition needs to promote federal legislation language within state block grants that supports the values of individual choice and inclusion in the community. If possible, specific wording should be included that provides for home modifications and services to persons regardless of disability type and age. At the state-level many agencies are already holding meetings and planning how the state block grants should be administered. Managed care is being discussed in many states as the main solution for cost-containment of soaring healthcare costs. State-level coalitions need to be formed immediately to ensure, no matter what type of new system is developed, that home modifications and services are funded as a cost-effective intervention across disability types and ages. At all levels, but especially the local-level, stakeholders need to carry out awareness programs to empower consumers and their stakeholders to act as a coalition to negotiate the current legislation so it supports home modifications and services. To do this, consumers and their families, service providers, the general public and policy makers must understand the importance of home modifications for independence and aging in place, and that it is a cost-effective intervention.
Key Considerations for Recommendations about Systems Change
Can we really create systems change? Yes, but it requires that leaders from both the elderly and disability stakeholder organizations immediately promote and support the building of a coalition that will collaborate on systems change strategies at the local, state, and federal level. If this is not done, the majority of systems change efforts over the next few years will be consumed by figuring out strategies to undo or deal with the poor policies currently being developed.
Academic and research institutions, and major stakeholders can provide valuable recommendations about the systems change process and strategies necessary to create permanent changes in the nationwide home modifications delivery system. The over plan for changing the home modification service delivery system must address the inter-related barriers in the current situation including: lack of awareness, training needs, service delivery, policies and funding. These recommendations have the potential to lay the groundwork for and accelerate the systems change process at the local, state, and national level. The following are key considerations about the process of systems change.
1. The first challenge is to determine who is going to step forward and start the coalition building and collaboration process?
Because of its pre-existing national political, educational and advocacy networks, AARP is probably in the best position to take the initial leadership role in forming a National Coalition on Home Modification. As the recognized national representative of the aging, it can easily confer with the other national organizations to quickly come to a beginning agreement about collaborating for nationwide systems change in home modifications and services.
2. Who are the major stakeholders to be included in coalitions at the national, state, and local level?
At each level the coalitions need to include the major organizations which represent the aging and persons with disabilities, families with children who have disabilities, and their health and home modification service providers. Although none should be excluded, not every organization can be involved in all activities equally. It is advantageous to maximize impact by including organizations that cross different ages or disability types. Coalitions may vary from level to level, state to state, and strategy to strategy.
At the national level, the coalition should initially try to include: American Association on Retired Persons (AARP), American Society on Aging, NAPAS, World Institute on Disability, American Occupational Therapy Association, the National and Regional Research and Training Centers, and the National Resource and Policy Center on Housing and Long Term Care (NRPCHLTC). Representation from a variety of national home modification professional associations, manufacturers and retailers will advance awareness and training strategies as well as policy changes. It would also be beneficial to include the State Techbill Projects which have similar goals in systems change relating to assistive technology. Finally, for federal legislation it may be necessary at some point to involve key senators or representatives. For example,Tom Harkin, a Democrat from Iowa, has traditionally been supportive of legislation that benefits the aging and/or disability populations.
Coalitions at the state and local levels should minimally include organizations which represent or serve children and adults with disabilities, and the elderly, such as: AARP, Area Agencies on Aging, Parent Education and Advocacy Organizations, Centers for Independent Living, Protection and Advocacy, State Developmental Disability Councils, and the state departments related to: Aging, Housing, Disability and Diversity, and Health and Human Services. For strategies relating to legislation or regulations, the coalition will need to identify and include other organizations and people with similar goals, including supportive legislators or other government officials. For educational or awareness strategies additional stakeholders might include: State and County Cooperative Extension, community colleges and trade schools, and state/local homebuilders or remodelers, and similar services associations.
1. What are the mutual values, goals and policies which both the aging and disability stakeholders can support?
As discussed earlier, there should be an agreement that all policies, regulations and budgeting reflect the values that persons with disabilities and the elderly should have a range of options which allow them to live and work in the community as independently as possible and appropriate. The stakeholders should advocate for policies that fund home modifications and services for persons regardless of their age or disability. It must be understood that not all stakeholders are going to get 100% of everything they want. Compromises will need to be made between stakeholder groups and within any legislation or policies.
2. Are there intrinsic organizations and leaders (national, state and local) which can serve as mediators to facilitate bridging differences in language, values, or goals? How can they be encouraged to be involved in this process?
At the national level, there are several possibilities for mediators to facilitate disccussions. First, AARP has existing staff that are trained in the role of process or meeting facilatator. There is also the Public Interest Center at the NRPCHLTC that could act as a national convenor for coalition building and discussions.
In many states, AARP, Area Agencies on Aging, State Developmental Disability Councils, and/or Protection & Advocacy carry out the role of training and empowering consumers to make an impact in the political process. The State Independent Living Councils are also charged with systems change and may have the interest or ability to convene coalition disscussions. These organizations could work together to help the different consumer stakeholders bridge differences in language, values or goals. It will be important to secure national and state level involvement and commitment from these organizations early in the coalitions building process. The State Techbill Projects might be able to facilitate as systems change projects with similar goals crossing all ages and disability types.
3. Are there intrinsic organizations and leaders (national, state and local) which can serve as trainers, guides, or lobbyists in the political process?
Again, AARP, World Institute on Disability, National Association of Protection & Advocacy (NAPAS), and/or the state's Governor's Council Developmental Disabilities probably have existing lobbyist and the most experience in the political process. They also have crucial information sharing or action-alert systems for their members. It is imperative that this political expertise is shared and used at the national, state, and local levels.
Planning Systems Change
After the coalitions are formed, in the early stages of collaboration, thorough plans need to be developed for both long-term and short term systems change strategies to be carried out at the local, state, and/or national level which address the barriers of lack of awareness, training needs, service delivery, funding and policy issues. A five year plan needs to include specific details about who, what, when and where strategies will be carried out. The recommendations of a 5-Year Action Plan will need to address:
What are the potential barriers and factors influencing the impact of each strategy? What strategies are appropriate for national, state or local planning and implementation? Are some strategies going to be easier to implement due to existing materials, staff, delivery system, and/or audience characteristics? Do some strategies need to occur first in order to increase the impact of other strategies? Do some strategies need to occur related to other pressures (for example, federal legislation being drafted or request for training programs)? What is a reasonable timeline and order to achieve the different strategies?
Moving Research from the Ivory Tower to Setting the Agenda
The National and Regional Research and Training Centers have a critical role to play in the National Coalition on Home Modification. These centers have a large and varied collection of resources to contribute to the systems change process, including: professional expertise in field of home modification, access to research data and publications.
One of the most important of these resources is the access to research data and information which is needed at the national and state level for policy making, and at the state and local level for awareness and training programs.
1. What strategies need to be devised to make the expertise and information of National and Regional Research and Training Centers more accessible and better utilized by consumers, home modifications and healthcare providers, and policy makers nationwide?
One information and referral center (including website) needs to be established as the central place for consumers, service providers and policy makers to get timely research and home modifications information or be linked to other related centers. A marketing plan will need to address reaching urban and rural local providers and service agencies. Disseminating current research information in a more timely manner and to a greater audience can be accomplished electronically rather than through professional journals and conferences. Concentrate on how to disseminate information that is already available to a national audience (private enterprise, national, state and local organizations and agencies, libraries, general population, etc.) through alternate formats (mainstream magazines, TV and PAS, video, satellite or fiber optics, CD ROM, CAD programs, 800 numbers, e-mail or web-sites). Identify and disseminate successful awareness and training programs to or through appropriate state and local organizations.
2. What new or additional information is needed from research and academic institutions? Document the national and state need for home modifications and services for National Coalition on Home Modification members and policy makers. Document the cost-effectiveness and success of home modification for policy makers and third party payers. Define what home modifications, products, and services are effective in maintaining independence, improving safety and/or reducing health and living costs across age and disability types.
Linking with private enterprise for funding, design and production. Develop a standard assessment which can be used by a variety of existing local professionals. Identify, compile and disseminate model policies, regulations and programs that can be shared with stakeholders and program planners, for example: building codes that include universal design, Community Development Block Grant initiatives that support home modifications and services, and programs that cost-effectively and appropriately serve both the elderly and persons with disabilities.
3. How can National and Regional Research and Training Centers be more consumer responsive? Seek out and use consumers as research staff. Use consumers as project consultants or advisors to identify and prioritize research needs and to conceptualize methodology. Use consumers as project consultants or advisors to identify and develop plans for appropriate dissemination of research information and conclusions.
Priority Action Steps:
Of course not all steps and strategies can be initiated immediately. The following is an attempt to prioritize the Action Steps that are needed to begin and support the much longer process of coalition building and systems change.
Form a National Coalition on Home Modification that will develop, coordinate, and disseminate a formalized 5-Year Action Plan for systems change which addresses lack of awareness, service delivery, funding and policy issues. Develop a method to share home modification information between Coalition members, national associations (AARP, NAHB, ASID, etc.), and academic and research centers, including for example:
An e-mail and/or website which is established by one of the National Research and Training Centers or AARP for communication, sharing of documents, and action alerts. Information about the need for home modification and its benefits needs to be summarized immediately into fact sheets that can be easily understood by consumers, stakeholders, and policy makers. This could be done jointly by a National Research & Training Center (content) and AARP (format for consumers or policy makers). These fact sheets then need to be shared through the national, state and local networks with consumers for use in current discussions about health and welfare reform, and managed care systems.
Develop a national marketing plan to share the National Research and Training Centers information about home modifications, successful products, and useful demonstration or training projects with consumers, their service providers, the general population, and national organizations which is feasible and effective.
Initiate development of state-level Coalition on Home Modification, including identification of leaders. Identify potential roles and resources of state coalition members (technical assistance, membership, communication systems, financial, lobbyist, training or awareness programs and materials, staff time, etc.). Identify and market a state speaker panel on universal design. Promote coalition building and participation in systems change activities at the local, state and national level through state professional organizations. Work through state and local stakeholder organizations for programs, and support of policies, regulations and/or funding for home modifications and services.
Develop local Coalitions on Home Modification which involve consumers as well as product and service providers, and work in coordination with state and national level coalitions. Identify local home modification product and service providers (including mainstream retailers), and support them through awareness and training activities, coordination of services, and inclusion in systems change efforts. Work with existing state and local consumer advocacy training efforts to promote and support stakeholder advocacy of programs, policies, regulations and/or funding for home modifications and services.
In order to achieve comprehensive long-lasting changes in the home modification delivery system, a diverse group of stakeholders will need to be involved in the systems change process at the national, state and local level. First, the elderly and disability stakeholders must come together in a strong coalition that supports federal and state health care and welfare policies based on the values of personal choice, independence and full inclusion in the community. Second, the expertise of the National Research and Training Centers is needed to provide immediate information and ongoing documentation about the need, effectiveness, and benefits of home modifications to consumers, service providers, policy makers, and third party payers. Next, the newly formed National Coalition on Home Modification must develop an Action Plan for systems change which devises and coordinates effective strategies at the national, state and local level to improve the awareness, service delivery, and policies relating to home modifications. As part of this effort, the Centers need to work with the Coalition to identify how their expertise, current and research information, and training can feasibly and effectively be shared nationally. The recommendations included in the preceding Next Steps section, if used within the overall systems change process and with the specific recommendations from the awareness, service delivery and funding issue papers, have the potential to prompt or hasten the creation of permanent changes in the home modification service delivery system.
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