Blue Print for ACTION

Systems Change Action Plan

There is a growing gap between the need for home modifications and flexibility of the housing industry and the medical and social service sectors makers to meet the nee

Home modifications not only have the potential to increase an individual's independence while decreasing reliance on care-givers 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 and the medical and social service sectors to meet the need for home modifications. There is also a need for additional supporting policies, public awareness and funding sources (Wilner, 1994).

Four major issues related to home modifications need to be addressed through systems change: research, education and awareness, service delivery, and funding policies and programs. Systems change is a planned process that coordinates many strategies to permanently alter the provision and funding of home modifications and services. To achieve systems change, coalitions will need to involve 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 disabilities.

The need for home modifications has risen over the past 20 years. However, too many wellintended programs and efforts have withered from lack of support or interest. Occasional, short-term, and uncoordinated efforts cannot succeed in bringing about permanent change. It is essential to engage in long-term activities that involve all principal stakeholders and attract legislators, regulators, and industry policy makers. Forming a coalition with specific goals and objectives is an effective way to promote the availability of home modifications.

The following section makes recommendations and action steps to promote the availability of home modifications through five major areas: leadership and coalition building, research, education and awareness, service delivery, and funding policies. The action steps should be adapted to the needs of the situation, whether on the national, state, or local levels.

Leadership and Coalition Building

A critical first step to these efforts is the presence of an organization(s) willing to provide leadership to a coalition whose priority is increasing the availability of home modifications. A small working group should be formed that can share leadership and costs and give credibility to the coalition. Among other tasks, this leadership group should conduct research and draft a status report on home modification needs and barriers in the geographic area. Other stakeholders may be convinced to get involved if a sufficient case can be made and specific activities identified relative to their goals.

Early on, the coalition members need to agree on goals, objectives, and operational strategies. All policies, regulations, and financial resources of the coalition should reflect the values of persons with disabilities and the elderly. The coalition should support a range of options which allow consumers to live and work in the community as independently as possible. The stakeholders should advocate for policies that fund home modifications and services for persons regardless of their age or disability. Not all stakeholders are going to achieve every objective they want; compromises will be needed among stakeholder groups and within any legislation or policies.

Members need to decide if the coalition is to be free standing with separate and discrete funding (e.g., via grants) or part of a larger sponsoring organization. Participating organizations need to provide staff time and in-kind support to conduct coalition activities.

An action plan that includes both a 5- to 10year time frame and shorter term objectives needs to be developed. The plan will help identify other partners for the Coalition. Enough time should be allowed to compensate for early set backs.

The following questions should be addressed by the Coalition:

are the potential barriers and factors influencing the impact of each objective?

strategies are appropriate for national, state, or community 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?

Coalition Building

Another task for the group is to identify likely partners that have mutual goals and can shoulder responsibilities identified in the action plan.

Who are the stakeholders and what are their desired outcomes?

What are their roles and are they changing?
What are the partnership possibilities?

People planning picture For the purposes of generating support and interest, a large coalition should be initially created. Members of each constituency need to be included in collaborative efforts. With some overlap, these organizations fall into one of four interest areas: the housing sector, the aging network. the disability community, and the medical system. Social service and many civic groups Easter Seals cross categories. It is essential to include mem- State Independent Living Council bers of the public, especially older and disabled United Cerebral Palsy Associations individuals. Community coalitions on home University Affiliated Programs modification which involve consumers as well Parent Training Information Centers as product and service providers should work in University Departments of Planning, Design coordination with state- and national-level or Allied Health coalitions. Not all members of the Coalition can Commercial banks, credit unions, or should be members of the leadership group, savings and loans which needs to be small enough to be a functional working group.

The following list identifies many possible coalition members. Coalitions may have very different compositions in different geographic areas; each locale will have different strong interested groups.

Possible Coalition Members

State-Level Public Agencies

Department on Aging
State Housing Agency
Housing Finance Agency
Protection and Advocacy Agency
Tech Act Program
Developmental Disabilities Council
Vocational Rehabilitation Agency
Cooperative Extension Service
Social Services
Welfare
Medicaid Office
State tax agency
Department of Public Health
Department of Education

State-Level Non-Profilt/Other

AARP
Arc
Christmas in April
Easter Seals
State Independent Living Council
United Cerebal Palsy Associations
University Affiliated Programs
Parent Training Information Centers
University Departments of Planning, Design, or Allied Health
Commercial banks, credit unions, savings and loans
Medical insurers

State-Level Industry Associations

National Association of Home Builders
National Association of the Remodeling Industry
American Institute of Architects
Association of Realtors
American Society of Interior Designers
National Kitchen and Bath Association
American Society of Landscape Architects
Interior Design Society of America
American Occupational Therapy Association
American Physical Therapy Association

Community-Level Public Agencies

County Health Services
High Schools
Vocational/Technical Schools
Community Development Office
Tax agency

Community Non-Profit Organizations

Community Housing Development Organizations
Housing Authorities
Community Development Corporations
Community Action Programs
Independent Living Centers
Area Agencies on Aging
Interfaith volunteer care-giver projects
Outreach ministries
Senior Centers/Councils
Charitable, civic, and fraternal organizations:
- Ruritan clubs
- Cosmopolitan Club
- Civitan
- Golden K's Kiwanas
- Lions
- Shriners
- Woodsman of the World
- Elks
- Knights of Columbus
Habitat for Humanity
Acute care and rehabilitation hospitals

Local For-Profit Entities

Therapists
Remodelers
Home health service agencies
Home Builders Association
Realtors
Designers/architects
Visiting Nurse Association

Research

To promote home modifications, coalitions need to assess needs, establish a baseline of services a and resources, and demonstrate effectiveness. Results of this research should be brought to policymakers to shape future legislation, regulations, and certification rules.

Identify Barriers

In order to understand the problems that the coalition confronts, conducting research on the primary barriers is crucial. Examples include but are not limited to:

Consumer characteristics and needs

Resource gaps
Level of consumer knowledge
Remodeler, health, or social service worker expertise
Awareness on the part of elected officials
Level of inter-agency coordination

Assess Consumer Characteristics and Needs

Fact Sheets Pic Conduct a statewide or areawide assessment of the need for home modifications and the contributing demographics. Additionally, learn what the consumer already knows and thinks about home modifications. However, it is unclear if the language, concepts, needs, and wants of the consumer are correctly identified. it is possible that in some circumstances technology (e.g., assistive technology, consumer or building products) are providing consumers with solutions that is inappropriate and ineffective. Consider using focus groups or telephone surveys to collect this information.

Assess Service Delivery System

To assess the current delivery system, the following questions should be answered:

Who is offering home modification services?

What are the current home modification programs? funding levels?

Assess Funding/Resources and Gaps

How many modifications are done each year?

How do households pay for remodeling projects?

Conduct Effectiveness Research

More scientifically-based evaluation studies are needed to understand how home modifications affect quality of life and their cost effectiveness. Such information is important to convince policymakers to fund programs that pay for home modifications. in addition, evaluations should be conducted concerning the efficiency and effectiveness of different service delivery models.

The added value of universal design needs to be demonstrated if remodelers and consumers are to get involved. Real-life cost/benefit analyses need to be completed that will substantiate the increase in home value, improvement in usability of the home, and cost savings by individuals who have not had to make additional modifications to their homes or move to alternate living environments.

Education

Home modification educational efforts must focus on aspects of the environment that can be improved for people of all ages and abilities. The perspective should shift from the individual's problems to how home modifications can solve tFe deficiencies in the environment. The consumer should not be made to feel as though they are deficient, but that areas in their living environments have been poorly designed and products difficult to use. A key part of achieving this is broadening the content and scope of educational materials. A portion of educational material should show modifications for individuals who use wheelchairs. The remainder should illustrate other changes that would make homes safer, more efficient, and easier to use for people with other disabling conditions as well as those who are temporarily able-bodied.

Home modifications and home improvements need to be presented with zest, enthusiasm, joy, and creativity. Home modifications must find their way into general consumer media (publications and television). Success stories need to appear throughout the media.

National Information Dissemination

computer keyboard Information and referral centers need to be established, or added to other programs, as places for consumers, service providers, and policymakers to get timely research and home modifications information. A marketing plan will need to address reaching urban and rural community providers and service agencies. Centers should:

Concentrate on how to disseminate information that is already available to new audiences (private enterprise, national, state and community organizations and agencies, libraries, general population, etc.) through a variety of formats such as mainstream magazines, TV and Public Service Announcements, video, satellite or fiber optics, CD ROM, CAD programs, 800 numbers, E-mail or web-sites. The sites need to be linked to other related websites.

Disseminate current research information and other educational materials in a timely manner and to a greater audience via the Internet.
Identify and disseminate information on successful products that benefit persons across age and disability populations.
Develop a method to share home modification information between coalition members, national associations (AARP, National Association of Home Builders, American Society of interior Designers, etc.), and academic and research centers, including E-mail and/or websites which are established by National Research and Training Centers or AARP for communication, sharing of documents, and "action alerts."
Summarize information about the need for home modification and its benefits into "fact sheets" that can be easily understood by consumers, stakeholders, and policymakers. These "fact sheets" then need to be shared through national, state, and community consumer networks for use in current discussions about health and welfare reform and managed care systems.

State and Local Information Services

Homeowners, renters, and landlords are unaware of the many design, product, and financing options that are open to them. For example, very few business owners consider the positive tax implications of access modifications. In response to this, groups operating on the state or community level should initiate several activities:

publish an annual funding, finance, resource, and organization directory for both professionals and consumers. This should include service delivery programs. Distribute it to all of the key players (e.g., builder's associations, senior centers, medical facilities).

Develop educational programs for consumers to better inform them about the benefits of home modifications, how to select and work with providers, and choose among home modification options.
Establish a toll-free information and referral service. This may be partnered with ongoing information provision on a variety of affordable home ownership or remodeling plans. Establish a technical assistance service to help households and organizations locate funding.

Training

Develop feasible and cost-effective training programs and materials for use at the state or community level for home builders and remodelers and cross-training for health and social service professionals about assessment. Emphasis should be placed on producing high quality materials, training the trainer packages, and peer training models. Sessions should be presented at professional conferences and meetings, from the local to the national level.

Universal Design Speaker Panel

Educate funders, program managers, lenders, medical insurers, and legislators about the need, broad constituency, and the cost effectiveness of home modifications. Expert speakers can be found through state associations, universities, and home modification programs.

Industry Initiatives

Market to the housing industry about the expanding need and consumer interest in home modifications. Establish housing design awards programs, linked with industry awards. Document and publicize notable success stories.

Push the real estate and appraisal professions to adopt continuing education requirements in home modifications and universal design so they can more reasonably assess the value of accessible housing.
Conduct awareness campaigns to inform renters of their rights to modify their homes under the Fair Housing Amendments Act of 1 988.
Convince medical insurers to include home modification materials and seminars as a part of their member services package.

Cross-Training Professionals, and Consumers

Training should focus on 1) establishing a set of basic competencies in home assessment, 2) working in interdisciplinary teams, 3) providing alternative solutions for meeting the needs of clients, 4) identifying funding sources, and 5) establishing methods of evaluation and effectiveness. Special efforts should continue to train mainstream remodelers in how to inform consumers who are updating parts of their homes (e.g., kitchens and bathrooms) about the advantages of features that could make the environment more enabling (e.g., adaptable bathrooms) for occupants who may experience a disability or for their guests.

Funding Resources

Efforts in funding and financing should focus on developing new sources, reshaping existing sources, and fully accessing existing sources. Ensure that representatives from funding and financing agencies and organizations are part of the coalition, such as banks, housing finance agencies, and public and private medical insurers.

National Efforts

Medicare

Coalitions should advocate for HHS to change Medicare reimbursements to more closely align with Medicaid allowances in the following ways:

1) pay for home modification assessments by occupational therapists or other health professionals and
2) allow broader coverage for modifications allowing for more flexible criteria such as that will improve safety, prevent accidents, prevent institutionalization, or allow for earlier discharge from institutional care settings. Research data utilizing client experiences and outcomes should be used to make the case for cost-effectiveness.

Medical Insurance

Coalitions should convince private insurers to allow medical insurance payments or reimbursements for home modifications. Insurers need to be persuaded that it is costeffective to pay for home modifications for some of their customers who may be able to leave a hospital or other setting for home. Research needs to demonstrate long-term reductions in the use of medical services for individuals who have received home modifications.

Reverse Equity Home Loans

Continue and improve information dissemination about Home Equity Conversion Mortgages to overcome limited consumer acceptance.

Encourage Fannie Mae's continued secondarv market support.
Encourage FHA's continued insurance for loans.
Expand loan availability to include South Dakota and Texas.

Internal Revenue Service

Advocate for changes in IRS rules that would more easily allow home modifications as a care deductible expense. This should include safety and independence rather than just the "medically necessary" criteria which is now used.

Planning

Person drawing picture Promote the idea of home accessibility modifications as a part of a family's long-term financial planning; as one of the many legitimate remodeling options that they have available to them.

State and Local Level Actions

HUD Community Development Block Grants

Many state and community housing programs which receive repair assistance funds from the HOME and Community Development Block Grant programs differently interpret and apply HUD's requirements regarding code upgrades on dwellings. Programs may apply upgrade rules for all HUD projects and, as a result, run the risk of using more funds on fewer households. Research the requirements; develop and utilize alternate flexible programs with different funding sources to avoid the code upgrade problem.

Federal Home Loan Bank

Financing: Book & Software Members of the Federal Home Loan Bank (which includes most commercial banks, Savings and Loans, and others) should be encouraged to partner with non-profits to obtain grants for special financing for affordable housing projects. Establish partnerships and make the case for adding home modification programs to the list of possible uses of funds.

Community Reinvestment Act (CRA)

The Community Reinvestment Act requires most banks to make loans to underserved members of their community. Institutional rather than individual approaches to banks are likely to be the most successful way to take advantage of the CRA. In this way, a state or community organization might create a coordinated lending program with a bank by assisting with developing a client base or by screening clients.

Competitive Application Programs

Competitive funding programs from housing finance agencies can add accessibility as a contributing feature to application criteria. State-level agencies that administer block grants from HUD or HHS can add criteria for home modifications to their evaluation criteria when reviewing competitive applications for funds. in this way, local communities who wish to access housing funds will be encouraged to add modification features to their grams.

Medicaid

Lobby for inclusion of home modifications in the state Medicaid program, ing any home and community-based waivers.

Housing Finance Agencies

2 people drawing Housing Finance Agencies may be in a good position to promote home modification programs for low and moderate income households. The number and variety of their possible funding sources and the flexibility of their use holds great promise. For example, HFAs use of general revenues to provide additional funds for targeted programs directly or to capitalize housing trust funds can allow for much greater flexibility and targeting of programs. HFAs can also encourage additional private lenders to move into the home modification lending area through partnerships and loan guarantees. HFAs may be able to take the lead in expanding the availability of purchase and rehabilitation loans. For example, both Minnesota and North Carolina Housing Finance Agencies have programs that can be used for home modifications.

Consolidated Plan

Although the competition for funds may be fierce, all CDBG and-HOME projects must be consistent with HUD's required Consolidated Plan which has been implemented in states and localities across the U.S. since 1 993. Each jurisdiction is required to update its Plan annually. it is during the priority-setting part of the plan development that organizations and individuals alike can influence fund expenditures for home modifications. Pubic hearings are mandated, where a strong presence by those who can argue for home modifications expenditures at these hearings can make a big difference in allocations.

State Funding

Coalitions should guard against over reliance on federal funds. As needs grow, additional funding streams from states' general revenues should be tapped. A few states, notably Massachusetts and Kansas, currently have pending legislation to promote home modifications through state tax allocations and tax incentives. Coalitions in other states should follow their progress and craft their own legislation.

Trust Funds

Advocate for the creation of community and county housing bonds and trust funds with home modifications as identified activities.

Community Housing Development Organizations

Create Community Housing Development Organizations (CHDO) with a home modification/home repair focus. The CHDO can seek funding from a variety of sources including designated HOME funds.

Private Non-Profits

Some Habitat for Humanity chapters have added housing rehabilitation to their new construction activities. Approach them to add home modifications to their activities.

Christmas in April is a community-based project dedicated to helping low-income, elderly, and disabled people live in warmth, safety, and independence through volunteer repair and renovation of owner-occupied homes. With affiliates in 46 states, many communities can take advantage of their services for home modifications.

Innovative Programs

New partnerships or little known uses of funds often hold promise for replication and utilization elsewhere. The North Carolina Adaptive Equipment Loan Program is a collaboration between the Program for Accessible Living, an independent Living Center in Charlotte, North Carolina, and NationsBank, one of the nation's largest commercial banks. This program assists North Carolina residents in obtaining loans for the acquisition of equipment which enables people with disabilities to improve their independence, quality of life, or become more productive members of the community. Funds for operations and loan guarantee came from the Kate B. Reynolds Charitable Trust, the National Institute on Disability and Rehabilitation Research, and NationsBank.

Fannie Mae and the Federal Housing Administration (FHA) are among the few lending institutions that offer home mortgages that allow rehabilitation expenses to be rolled into a first mortgage. FHA's 203(K) program is available nationally while Fannie Mae's new program, Home Choice, is available in 11 states and Washington, DC. Home Choice also is targeted home owners with disabilities.

Service Delivery

Ramp to a house picture Too few of those who are in a position to help others modify their homes have the information or expertise to be effective. Professional degree or other training programs offer little course work and no requirements in universal design or modification issues. Continuing education opportunities are limited. The economics of the medical system do not allow for adequate staff time in patient's homes to do useful assessments. Remodelers, information and referral personnel, advocates, and others do not know where to get information and where to see good examples of modifications. Locally, communities can collaborate on models and demonstration projects.

National and State Efforts

Increase Information Sharing

Develop a feasible and effective national "marketing plan" to share the information generated by NIDRR-funded National Research and Training Centers about home modification programs, successful products, and useful demonstration or training projects with consumers, their service providers, the general population, and national organizations.

Expand Medicare and Medicaid Coverage

While there is enormous pressure to reduce health care related expenditures, efforts should be made to ensure that these programs continue to pay for existing equipment and assistive devices and cover additional home modifications that help prevent accidents or forestall institutionalization. It would also be especially useful to lift existing expenditure caps and restrictions in the growing Medicaid Waiver program, which has the authority to pay for a broader range of home modifications than the conventional program.

Involve Managed Care

Handicapped house & walkway picture If cost-effectiveness can be proven, health plans would be encouraged to form contractual alliances with product suppliers and home modification service programs, potentially leading to reduced prices for adaptations. In addition, they may have added incentives to provide educational programs for professionals and consumers about modifying homes. A major constraint that must be overcome in capitated systems is provider concern about consumers making use of what could be a large home modifications benefit and then moving to another plan.

Promote thewidespread Use of Home Assessments

Health care professionals (e.g., physicians, nurses, hospital discharge planners, home health workers), social service personnel (e.g., case managers), and workers in the building industry (e.g., remodelers) should become more aware of how to assess problems that environments present for their clients. It would be very useful if physical exams and discharge plans for older adults and younger persons with disabilities included a battery of questions about functioning and the home environment and, if the situation warrants, home visits by occupational therapists or other trained personnel.

Develop Centralized Referral Systems

Given the lack of information concerning qualified providers and useful products, Area Agencies on Aging and Centers for Independent Living should uniformly set up centralized referral systems for older adults and younger persons with disabilities including costs of modifications and provider references, experience, and reliability.

Increase the Commitment of the Housing Sector

In addition to its focus on neighborhood rehabilitation and housing affordability, the housing sector needs to embrace the concept of home modifications as an essential part of its mission. A foothold in this area may be the lack of affordable accessible housing for persons with disabilities and the cost-effectiveness of modifying existing housing compared with building new units. While such an approach may become more feasible with additional block granting of HUD programs, success will hinge on community needs assessments, participation in HUD's Consolidated Plan, and advocacy.

Replicate and Build on Successful Practices

Successful models, which illustrate best practices, make it easier for other programs to avoid pitfalls and develop more rapidly. Emphasis should be placed on programs that serve a variety of ages as they have the potential to build coalitions among groups and develop broad political support. Replication of such exemplary models would be enhanced by case studies that analyze their strengths and weaknesses; demonstrations to test their viability in other settings; and best practice awards from remodeling, aging, and disability organizations that highlight their accomplishments.

Enforce the Fair Housing Amendments Act of 1988

The Fair Housing Act sets basic standards of accessibility for new construction over four units and calls for existing multi-unit housing to provide "reasonable" accommodations for persons with disabilities. The Fair Housing Act's basic provisions need to be enforced and its concept extended to singlefamily housing and smaller apartment cornolexes.

Community Actions

Identify Providers

Girl Speaking picture Identify community 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.

Advocacy Training Efforts

Work with existing state and community consumer advocacy training efforts to promote and support stakeholder advocacy of programs, policies, regulations and/or funding for home modifications and services.

Home Modification Coalition

Create a community home modification coalition. This can operate on local issues to complement the work of a state level coalition. For example, local coalitions can work to add home modification services to other local programs that already provide services to homes (e.g., weatherization, home repair, and chore services).

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