Issues in Creating Livable Communities for People with Disabilities: Proceedings of the Panel
This paper is also available in alternative formats and on the awarding-winning National Council on Disability (NCD) Web site (www.ncd.gov).
Publication date: October 1, 2007
The views contained in this report do not necessarily represent those of the Administration, as this and all NCD documents are not subject to the A-19 Executive Branch review process.
National Council on Disability Members and Staff
John R. Vaughn, Chairperson
Patricia Pound, First Vice Chairperson
Milton Aponte, J.D.
Victoria Ray Carlson
Robert R. Davila, Ph.D.
Young Woo Kang, Ph.D.
Anne M. Rader
Michael C. Collins, Executive Director
Martin Gould, Ed.D., Director of Research and Technology
Mark S. Quigley, Director of Communications
Julie Carroll, Senior Attorney Advisor
Joan M. Durocher, Senior Attorney Advisor
Geraldine Drake Hawkins, Ph.D., Senior Program Analyst
Mark E. Seifarth, Congressional Liaison
Pamela O'Leary, Sign Language Interpreter
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Secretary
The National Council on Disability deeply appreciates the policy research undertaken by Mia R. Oberlink of the Center for Home Care Policy and Research in the writing of this proceedings paper.
On October 31, 2006, the National Council on Disability (NCD) released a report entitled Creating Livable Communities at an event co-hosted by NCD and AARP at AARP world headquarters in Washington, D.C. The event included two expert panel discussions. Panelists commented on the report findings and shared their views about what adults with disabilities and seniors need in order to live in the community with independence, choice, and control, and what the public and private sectors as well as consumers can do to help communities become more livable.
The event's NCD/AARP co-sponsorship underscores the point that the disability community and aging network have much in common. By 2030, one in five people in the United States will be over the age of 65. Currently, more than 4.7 million Americans aged 65 years or older have a sensory disability involving sight or hearing, and more than 6.7 million have difficulty going outside the home. As the population of elders grows, it is likely that the number of people aged 65 and older with disabilities also will grow, particularly among those 75 years of age and older.1 Thus, it makes sense for the disability community and aging community to work together, align goals, and share resources to address the challenges ahead.
NCD and AARP agree that the livable community concept is central to the goal of fostering independence, choice, and control for people with disabilities and seniors. The livable community concept has been a key focus of NCD's recent work. Communities in the United States are facing increasingly difficult choices and decisions about how to grow, plan for change, and improve the quality of life for all citizens, including people with disabilities. NCD believes that, for the promise of full integration into the community to become a reality, people with disabilities need safe and affordable housing, access to transportation, access to the political process, and the right to enjoy whatever services, programs, and activities are offered to all members of the community by both public and private entities.
Livable communities are also a focus of AARP's Social Impact Agenda, which covers in three broad areas: economic security, health and social services, and livable communities. For AARP, the definition of "livable community" includes affordable and appropriate housing, adequate mobility options, and supportive community features and services, which together facilitate personal independence and the engagement of residents aged 50 and older in civic and social life. Thus, there is significant overlap between the two organizations' agendas.
This publication provides background information about the livable community concept, a summary of the main findings and recommendations of NCD's reports on livable communities, and a summary of the lively and insightful panel discussions that took place at the NCD/AARP event.
Livable Communities for Adults with Disabilities
Disability prevalence is rising in the population under age 65 and, as mentioned in the introduction, predictions are that disability prevalence also will rise sharply among people aged 65 and older as the current senior population of 34 million doubles over the next 20 years.2 In light of these demographic developments, communities will face significant challenges as they strive to address consumers' needs, respond to their preferences, and implement policies and programs that help adults with disabilities remain independent and involved in community life for as long as possible. The National Council on Disability has released two reports in the past few years that discuss how the livable community concept can help government at all levels reconceptualize and address these challenges. These reports also present a variety of strategies that communities can use to become more livable for adults with disabilities and seniors.
In the first report, Livable Communities for Adults with Disabilities, a framework for defining the term "livable community" was introduced. According to the framework, a livable community for adults with disabilities
- Provides affordable, appropriate, and accessible housing
- Ensures accessible, affordable, reliable, and safe transportation
- Adjusts the physical environment for inclusiveness and accessibility
- Provides work, volunteer, and education opportunities
- Ensures access to key health and supportive services
- Encourages participation in civic, cultural, social, and recreational activities
A number of steps can be taken to make improvements in these areas and make communities more livable for adults with disabilities and seniors. According to the Livable Communities for Adults with Disabilities report,
- The availability of affordable, appropriate, and accessible housing is crucial for people with disabilities; those who have stable housing are able to achieve other important life goals, such as obtaining an education, job training, and employment. Yet people with disabilities face a crisis in the availability of decent, safe, affordable, and accessible housing. To increase the stock of such housing, the housing system and the disability community need to work together. Additional steps include providing developers incentives to maintain existing affordable housing units and/or increase them; providing tax credits to help individuals with disabilities and seniors remain in the homes where they currently live; and expanding awareness and encouraging incorporation of universal design and accessibility features into existing or new housing stock.
- Nearly 6 million people with disabilities have difficulty getting the transportation they need because public transportation where they live is limited or nonexistent, they don't have a car, their disability makes transportation difficult to use, or no one is available to assist them. Access to affordable, safe, and reliable transportation is necessary if people with disabilities and seniors are to participate fully in community life. Ways to improve transportation systems include combining all the disparate transportation services and funding streams into one system that is more efficient, cost-effective, and universally accessible; computerizing and centralizing dispatch systems to make on-demand transportation more efficient for consumers; and exploring the use of new technology to help people with disabilities and seniors navigate their community's thoroughfares and transportation options.
- Despite the many accommodations that have been made since the passage of the Americans with Disabilities Act (ADA), improving access to the physical environment is still a work in progress. Steps that some communities are taking to raise awareness about and accelerate work to improve access include increasing awareness among community members by providing them with sensitivity training so that they can experience firsthand the access problems people with disabilities face; educating city planners and public officials about how lack of access affects elders and adults with disabilities and what they can do as professionals to improve the situation; and modifying local laws, ordinances, and regulations that stand in the way of improving access to buildings, streets, services, and so on for people with disabilities.
- Unemployment among adults with disabilities remains unacceptably high; working-age adults with disabilities are half as likely as working-age adults without disabilities to be employed. Yet Title I of the ADA says that adults with disabilities who are qualified and want to work must have an equal opportunity to work. Some ways to increase employment opportunities for adults with disabilities include using technology to facilitate education and training programs and expand telework opportunities; increasing awareness among community members about the value of employing people with disabilities; setting an example by hiring people with disabilities for positions within government agencies; helping businesses make reasonable accommodations for employees with disabilities; and removing any remaining disincentives to work, such as the potential loss of health care or other entitlements.
- Adults with disabilities face a fragmented health care delivery system that does not always respond to their wishes or needs. Remedies include designing health care systems that are consumer directed and provide care coordination to ensure that the right kind of care is provided to beneficiaries; allowing "money to follow the person" to the most appropriate and preferred care setting to create a more equitable balance between institutional and community-based services, eliminate barriers to care, and provide consumers with choice over the location and type of services provided; integrating the delivery of acute and long-term care services to provide seamless, high-quality, consumer-centered, and continuous care across settings and providers; and providing support services that are linked to housing to increase the availability and efficiency of service provision.
- Adults with disabilities are more likely than people without disabilities to feel isolated and participate in fewer community activities. Offering activities and providing people with information about these activities is just the first step. Community organizations also need to actively reach out to people with disabilities to include them in activities and ensure that they have access to all of the opportunities that are offered to other members of the community.
The Livable Communities for Adults with Disabilities report proposes four general strategies that can be used at every level of government to facilitate change in these six areas:
- Consolidating administration and pooling funds of multiple programs to improve ease of access to and information about benefits and programs for consumers
- Using tax credits and other incentives to stimulate change in individual and corporate behavior and encourage investment in livable community objectives
- Providing a waiver or other authority to help communities blend resources from multiple public funding streams to provide and coordinate different services
- Requiring or encouraging a private sector match to leverage public funding and stimulate public-private sector partnerships
Creating Livable Communities
In NCD's second report, Creating Livable Communities, these recommendations are expanded upon and considered in greater detail. The report argues that communities are now facing, and will continue to face, significant challenges to addressing consumers' needs in a coordinated and comprehensive manner, reducing fragmentation in the service delivery system, providing consumer choice, and implementing policies and programs that help adults with disabilities remain independent and involved—all factors that add to the livability of communities. The report presents six general policy levers or strategies that can be implemented on the federal and local levels to support livable community objectives. These strategies offer opportunities to change the way government organizes and manages resources, interacts with the business community, and responds to consumers' evolving interests, needs, and preferences:
- Agreement on changes in the collection and management of, and access to, multiple agency information about programs and benefits in order to be responsive to consumers
- Utilization of favorable tax treatment (e.g., tax credits) to stimulate change in individual and corporate behavior that encourages investment in livable community objectives
- Agreement on common performance measures across multiple federally funded programs
- Utilization of private sector match to competitively secure public funding and stimulate public-private partnerships
- Agreement on changes in infrastructure to consolidate administration of multiple programs and improve ease of access
- Utilization of waiver authority to promote state options to advance consumer choice and community participation
The report also proposes a set of specific recommendations that, if implemented, could facilitate the creation of livable communities. These recommendations call for the following:
- Issuing a new Executive Order to charge the Office on Disability of the Department of Health and Human Services to chair a time-limited (six months, for example) workgroup on livable communities that would adopt and promote the strategies described in the NCD report. The workgroup would include representatives of the departments of Housing and Urban Development, Transportation, Education, Labor, and Treasury, the Social Security Administration, the Centers for Medicare and Medicaid Services, the Administration on Aging, the Administration on Developmental Disabilities, and the Office of Community Services within the Department of Health and Human Services.
- Modifying federal requirements for allocation of low-income housing tax credits so that, in making awards to developers, all states require (1) the adoption of universal design standards and (2) documentation of approaches to allow a minimum of 10 percent of units in multifamily affordable housing developments to be affordable to individuals with disabilities on fixed incomes, in other words, Supplemental Security Income (SSI) and Social Security Disability Insurance recipients.
- Modifying performance measures being used to assess individual program strengths and weaknesses to focus on collaboration across departments and agencies to enhance livable community outcomes.
- Utilizing grant funds from the Centers for Medicare and Medicaid Services, Social Security Administration, and departments of Labor, Commerce, Health and Human Services, Transportation, and Housing to offer a consolidated Livable Communities Program Initiative that streamlines (1) a single application for funds, (2) utilization of waiver authority, (3) consolidation of program management and service delivery, and (4) use of tax credits to reengineer the delivery of long-term supports, transportation, housing, employment, education, and cultural, social, and recreational opportunities at a community level.
- Expanding tax incentives to promote matched savings plans for low-income wage earners across the life span.
- Utilizing and leveraging community service opportunities and volunteers to support livable community objectives.
- Focusing on the Gulf Coast recovery and rebuilding to promote livable community outcomes.
- Establishing a National Resource Center on Livable Communities to educate policymakers, government administrators, community developers, people with disabilities, and the public about best practices in policy development and program implementation.
At the October NCD/AARP event, participants in the panel discussions were asked to comment on the policy levers and recommendations in the Creating Livable Communities report and to provide additional suggestions for action to improve community livability for adults with disabilities and seniors. The participants touched upon a wide range of issues related to community livability, and their discussions are summarized below.
Day Al-Mohamed American Council of the Blind
Yerker Andersson National Association of the Deaf
Curt Decker Consortium for Citizens with Disabilities
Elinor Ginzler AARP
Andrew Kochera AARP
James Koski Congressional Livable Communities Task Force
Sandy Markwood National Association of Area Agencies on Aging
Michael Morris NCB Development Corporation
Mia Oberlink Center for Home Care Policy and Research
Patricia Pound National Council on Disability
Larry Roffee Access Board
Nancy Starnes National Organization on Disability
Janna Starr United Cerebral Palsy
David Warner Social Security Advisory Board
III. Living in the Community with Independence, Choice, and Control
"We believe that the quality of our lives is a function of the communities we live in. Appropriate housing, transportation options, and ways to be engaged with fellow members of the community are all part of living in a vital community. They are all things that need to be nourished and encouraged by policy in both the public and private sectors."
--John Rother, AARP
Essential Components of a Livable Community
Panelists discussed the factors that facilitate community living for people with disabilities and seniors. Overall, they agreed that affordable, accessible housing and employment opportunities are scarce for people with disabilities and that accessing information is difficult. They also agreed that housing, employment, and information are all "high-leverage" areas, where a concerted effort by the public, private, and voluntary sectors to improve access could make major differences in the lives of adults with disabilities and seniors.
A number of supports need to be in place to enable people with disabilities and seniors to live in the community with independence, choice, and control. It is not just a matter of ensuring compliance with the Americans with Disabilities Act—although that is a good place to start. As panelist Larry Roffee of the Access Board pointed out, adjusting the environment to make it more accessible and inclusive is crucial, but it is only one part of making communities more livable for people with disabilities. Access to affordable, accessible housing and transportation, employment, and education opportunities, appropriate health care and supportive services, and civic and social activities is just as necessary if people with disabilities and seniors are to live successfully in the community.
Elinor Ginzler, director of the livable communities section of AARP's Social Impact Agenda, put it succinctly when she said that making a community livable means providing "for all citizens of all ages and all abilities so that they can carry out their everyday lives" and participate in the community's economic, civic, and social life. Livable communities recognize that people with disabilities make many contributions to the community, just as people without disabilities do. Panelist Nancy Starnes of the National Organization on Disability, which presents awards to communities that have successfully implemented measures to become more livable for people with disabilities, mentioned that some communities actively reach out to and attract people with disabilities because they "recognize the economic, social, and cultural value that people with disabilities can contribute to the community," and that these communities should serve as national models for others to emulate.
"In reading the NCD report, I couldn't help but notice that the explanations and recommendations about housing took up a lot more pages than anything else in the report….and I think that this reflects the complexity that people have to endure to get affordable, accessible housing."
--Janna Starr, United Cerebral Palsy
In most conversations about livable communities, affordable and accessible housing quickly becomes the focus of conversation because it is so fundamental to people's lives and, unfortunately, lacking for many people with disabilities. But appropriate housing may be even more difficult to find for particular subgroups of people with disabilities. A member of the audience, for example, reminded attendees that available housing rarely, if ever, accommodates people who need live-in assistance. She called for housing units that are set aside for just such situations, as well as a "new kind of congregate apartment where people have privacy, but two units share one kitchen where people can assist each other." Janna Starr, with the United Cerebral Palsy organization, pointed out that only 1.5 percent to 3 percent of affordable, accessible housing goes to people with disabilities, "and a much lower percentage, if you're talking about people who are SSI recipients and have an extremely low income. It takes about 108 percent of an SSI recipient's monthly income to rent a studio apartment in a major city in the United States." Curt Decker, of the Consortium of Citizens with Disabilities, concurred and added that another group—people with cognitive and mental disabilities—should have access to public housing opportunities as well.
As a housing specialist in AARP's Public Policy Institute, Andrew Kochera spoke of the vital role that tax incentives, particularly low-income housing tax credits, play in the development and availability of housing. As part of the Tax Reform Act of 1986, the Federal Government created the Low-Income Housing Tax Credit (LIHTC) to encourage the production and redevelopment of livable, affordable rental housing across the nation. This tax credit is a significant source of financing for developers seeking to construct and rehabilitate housing opportunities for people with disabilities. According to Kochera, the LIHTC is an example of a policy decision that has had an immediate and major impact on the market. "In 2005, there were about 120,000 multifamily units of all kinds built in the U.S. Of that 120,000, more than 70,000 can be tracked back to the LIHTC, and that is remarkable." Furthermore, in developments designated as primarily for seniors, people with disabilities, and other special populations, attention is being paid to incorporating architectural features that improve accessibility. However, Kochera conceded, there is a long way to go before universal design features, such as lever door handles instead of doorknobs, will be routinely incorporated into both multifamily housing and in the 2 million single-family homes that are built each year.
"My organization hears from people with disabilities that they want to work and that they would buy their own housing and health care if they had a job."
--Curt Decker, Consortium for Citizens with Disabilities
For people with disabilities, employment may be just as hard to find as affordable and accessible housing ,if not harder. Although there has been a small increase over the past decade in the percentage of adults with disabilities who are employed, the unemployment rate among adults with disabilities is still high. The 2004 National Organization on Disability/Harris Survey of Americans with Disabilities shows that working-age adults with disabilities are half as likely as working-age adults without disabilities to be employed (35% versus 78%), and people with severe disabilities are less likely to be employed than those with slight disabilities (21% versus 54%). Sixty-three percent of unemployed adults with disabilities say they would like to work, but obstacles to finding appropriate employment abound.3
As in the housing arena, there is a role for tax incentives to increase employment opportunities for adults with disabilities. Tax incentives such as the Disabled Access Tax Credit, the Tax Deduction to Remove Architectural and Transportation Barriers to People with Disabilities and Elderly Individuals, and the Targeted Jobs Tax Credit have encouraged some employers to employ people with disabilities.
When businesses and the federal, state, and local governments actually employ people with disabilities, they set an example for others and also demonstrate that people with disabilities and seniors are desirable employees. Elinor Ginzler of AARP said that her organization changed its name from the American Association of Retired Persons to AARP because most of its members are working and say that, as they get older, they have every intention of staying in the workforce. In addition, said Ginzler, "the reality is that we have workforce shortages across this country in a variety of fields because there aren't younger people coming into the work environment in the same numbers. So there is an incentive to develop policies and supports to keep workers who are mature and experienced, and possibly disabled now or in the future, in the workforce."
Curt Decker pointed out that the private sector is a critical player in efforts to help people with disabilities achieve economic self-sufficiency. "I think that the disability community sometimes has relied too much on government programs, but of course it had to because of the need for a safety net," Decker said. "Clearly, we need buy-in from the private sector, especially in the area of employment, or we will never make that leap to income security."
"A central repository of information that pulls together many sources and where people with disabilities and others can go to learn about housing or employment or anything else they might need would be fantastic. It's one-stop shopping."
--Nancy Starnes, National Organization on Disability
The establishment of a National Resource Center on Livable Communities to provide easier access to information for adults with disabilities and their caregivers and to disseminate information to planners and other professionals in local and state governments was enthusiastically supported by Nancy Starnes, of the National Organization on Disability, and Sandy Markwood, of the National Association of Area Agencies on Aging. Markwood noted that the recent reauthorization of the Older Americans Act included, for the first time, expanded community planning language to help build bridges between the aging network and local governments—bridges that are needed to improve community livability for older adults. Markwood stressed that the action should not be on the federal level only. "As we address the issue of livable communities," said Markwood, "we need to make sure that we also focus on state and local governments, which have purview over such things as land use and zoning ordinances. At the local level people are looking for information, technical assistance, best practices, and ways to come together around livable community goals," which a National Resource Center could provide.
Ultimately, suggested Markwood, the pivotal question is, "What does it take at the community level to enable people to successfully live and age in that community? Much planning goes on at the community level, including land use, transportation, and capital improvements planning, but it's going on in a vacuum because the assumption is that all community residents are young and able-bodied families with two kids and no disability needs. This is happening not because planners at the local level are intentionally leaving out the aging or disability community, but because they do not know about the needs of our populations. The livable community concept is holistic. It includes housing development, transportation, workforce development, public safety, parks and recreation, civic engagement, volunteerism, land use, and economic development. It's everything a community does."
It is not always easy, however, to effect change at the local or state level to make communities more livable for people with disabilities. Yerker Andersson, board member of the National Association of the Deaf, related an example of a current legal issue being played out in Maryland, where the state legislature has introduced a bill to require visual fire alarms in condominiums, and where a task force convened to study the issue, with representation from the deaf community, has released a comprehensive report supporting the proposed measure. So far the report's positive recommendations have been met with some resistance from the private sector because of fears that the proposed visual fire alarm measure will be too expensive to implement.
"As the nation's largest employer and landlord, the federal government is in a position to create the momentum for change. It needs to lead by example and be a good partner with local and state governments to support community livability."
--James Koski, Congressional Livable Communities Task Force
The Role of the Federal Government in Creating Livable Communities
In addition to acknowledging the key role that local governments play in supporting livable community objectives—because it is on the local level that many decisions affecting community livability are made—panelists agreed that the Federal Government also has an important role to play. While there are many examples of federal initiatives that address various community livability issues, there has not yet been a coordinated, comprehensive effort to tackle them, nor is there always agreement about how to proceed. Evaluation of the administration of federal disability and aging programs must take into account not only how well individual programs are being administered, but also how these programs affect and support the real day-to-day lives of people with disabilities and seniors.
Panelist James Koski, deputy chief of staff for Rep. Earl Blumenauer (D-OR), the founder of the Livable Communities Task Force in Congress, provided several examples showing that the Federal Government is taking steps to support livable community objectives both on its own and in cooperation with state and local governments. For example, the Department of Defense is helping to clean up closed military bases to prepare them for redevelopment, and the General Services Administration has an urban development and good neighbor program that has worked with local governments to support central business districts and preserve historic properties. However, these efforts and others are "scattershot," said Koski, and a more comprehensive approach to supporting community livability on the part of the Federal Government is needed. Koski praised the Creating Livable Communities report because "it is another step in helping build a consensus and giving communities the resources and recommendations they need to take progressive steps. It is exactly the kind of thing that helps Congress address these livability issues as well."
Several of the panelists pointed out that one livable community issue where the Federal Government must play an active role is disaster preparedness. Sandy Markwood spoke of the lack of planning for the evacuation of people with disabilities and older people in the aftermath of Hurricane Katrina. Referring to a recommendation in the Creating Livable Communities report, which called for focusing on the Gulf Coast recovery and rebuilding to promote livable community outcomes, Nancy Starnes commented, "If a community is being rebuilt, and what is being built is not accessible, it sends a very strong message that mobility-impaired people are not wanted in this community. And if accessible housing for people with disabilities and seniors is being built in flood plains, the message that sends is that these populations are expendable should something like Katrina happen again."
In the discussion about the Federal Government's role, a lively debate ensued about the Office of Management and Budget's (OMB) Program Assessment Rating Tool (PART), which the Federal Government uses to evaluate federal agencies' administration of federal programs. Some observed that what might have started as a tool to evaluate agencies' administration of programs has, in fact, become a tool to evaluate the programsthemselves. Several panelists
commented that evaluations use inappropriate performance measures, resulting in many disability programs receiving low to moderate ratings. Janna Starr pointed out that one goal of PART is to standardize outcome measures across programs, but "one size does not fit all and there isn't an outcome measure that's common to all of the kinds of government programs there are." In fact, said Starr, effective programs that serve people with disabilities have to be highly customized and do not lend themselves to this kind of measurement. Curt Decker added that "some of the great outcomes for people with disabilities and the elderly are not that tangible. A good outcome for a person with a disability might be that he or she got representation and had a chance to challenge the system. There is now no way to measure that."
Others expressed the opinion that accountability is needed in government-funded programs, and the best way to ensure that evaluators' outcome measures accurately reflect what disability programs do is for people who work in those programs to get engaged in defining appropriate outcome measures, rather than leave it to examiners who have little or no knowledge or experience with disability programs. Sandy Markwood cited the example of the Administration on Aging, "which had a negative reputation with OMB on outcome measures for aging programs. Over the course of the past three years, however, they have turned that around by helping Area Agencies on Aging and State Units on Aging understand that they need to get involved in helping to define what those outcome measures should be. Instead of saying outcome measures are bad or outcome measures don't tell the story of our programs, you need to turn that around and make sure that they do."
Michael Morris summed up the skepticism expressed by most panelists about current evaluation methods when he said, "We're probably in our infancy in terms of understanding what might be appropriate performance measures," and he enumerated the important questions that still need to be considered: "What are our methods of evaluation? What is our measurement system? What should be the indicators that we use for evaluation of cross-government programs?" But Morris also challenged panelists to think about performance measurement in a new way, using the comprehensive livable community concept as a framework. "This broader concept," explained Morris, "would help us understand what really happens to people in their communities and across government programs by including qualitative measures in addition to strictly quantitative ones," which do not, everyone agreed, tell the full story.
"Introducing things like tax incentives and zoning standards is great, but you also have to enforce them."
--Day Al-Mohamed, American Council of the Blind
The Role of Advocacy in Creating Livable Communities
Several panelists pointed to what they considered an omission from the Creating Livable Communities report: the important role that advocacy plays in ensuring that statutes are enforced. Without advocacy and enforcement, there can be no guarantee that livable community measures will be implemented.
Curt Decker made a clear and succinct statement about the important role that advocacy plays in ensuring that legislation intended to facilitate livable community objectives and improve the quality of life of people with disabilities and seniors actually is enforced: "It's naïve to think that any statutes are self-enforcing. Everyone knows that without strong advocacy, both legal and nonlegal, and enforcement from the Federal Government, none of this happens." To illustrate these comments, Decker related his organization's frustrating experience with the trailers that were made available as temporary housing to some survivors of Hurricane Katrina: "We had to sue FEMA to make sure that a certain percentage of those trailers were accessible for people with disabilities. Having programs isn't enough. The advocacy component is just as important."
In addition, Decker referred to the need for advocacy related to two other initiatives: the Workforce Investment Act (WIA), which was included in the Creating Livable Communities report as a positive example of consolidating multiple programs to improve ease of access, and Medicaid waivers, also included in the report as a positive example of options that advance consumer choice and community participation. WIA was passed in 1998 to better serve job seekers and employers through a new framework that brings together multiple federal employment and training programs into a unified system of support. This single system is anchored by comprehensive One-Stop Centers in each workforce investment area in all 50 states, 80 percent of which serve people with disabilities as well as people without disabilities. While Decker noted that the One-Stop concept seems like a positive support for people with disabilities, at least on the surface, "what we find is that money is being raided from the disability programs to support general One-Stop services, so we end up with One-Stops that are located far from people with disabilities, who have to travel miles to get there, and then once they are there, they can't get in because there are stairs. This is a nice concept on paper, but in reality it doesn't work so well for people with disabilities." As for Medicaid waivers, Decker said that while they can be a useful tool to break down barriers and allow Medicaid money to be used for community living, there is potential danger that these "waivers can be used to undercut entitlements." In both cases, said Decker, "there needs to be advocacy to make sure that such things don't happen."
Putting these concepts into everyday human terms, Day Al-Mohamed said that people with disabilities cannot necessarily count on the good intentions of policies or programs to get their needs met. What happens, for example, if a person with disabilities tries but cannot get his or her housing needs met in the community? "I would like to believe that it's a wonderful world and incentives will make everything possible for people with disabilities. But where should people go when they get stuck? There needs to be a fallback position, something people can do when things don't happen as they should."
Michael Morris seconded this viewpoint and summed up the discussion in this segment by saying that "civil rights protection and an advocacy component" must be at the core of any livable community definition. "It has to be part of the overarching framework," he said.
"There is a partnership opportunity between the aging network and the disability community around the livable community concept—a livable community that supports people's independence and helps them live and age successfully."
--Sandy Markwood, National Association of Area Agencies on Aging
Themes and Recommendations
The theme to which panelists returned again and again is the need for and importance of collaboration at all levels to achieve livable community goals. Referring to the Federal Government's role, James Koski of Congressman Blumenauer's office said that the livable community concept is something that both Democrats and Republicans can work on together: "This doesn't have to be a partisan issue." In addition to "reaching across the aisle," Koski said that the Federal Government's best role is not necessarily to solve livable-community-related issues itself, but rather "to be a good partner with local governments" and provide funds and support to local government-led, livable-community-related initiatives.
Collaboration with the private sector is a related theme that surfaced several times during the panel discussions, particularly when the topic of employment for people with disabilities and seniors came up. Tari Hartman, an audience member, said that "building strategic alliances with the business community, like the U.S. Business Leadership Network" (a national business organization that uses a business-to-business strategy to promote inclusion of people with disabilities in the workforce) is necessary to give people with disabilities opportunities to work and achieve economic self-sufficiency.
Finally, several panelists stressed the need to build alliances between the various groups that work on aging issues and those that work on disability issues. Michael Morris said that the comprehensive livable community framework included in NCD's reports is a "unifying and universal construct" that both the aging and disability communities can rally around and use to further their common agendas. "The framework redefines how we look at the things people with disabilities and seniors need to live in the community and how these things are funded. It's not just health care, or education, or housing, or employment alone, but understanding holistically what makes up quality of life, whether you're older or younger, whether you have one challenge related to daily living or you have more significant disability. The comprehensive livable community framework challenges the Federal Government not to look at just one program at a time, but to move outside the little tunnels of authority. It gets people thinking about such things as combining federal and state resources and public and private sector resources across the aging and disability authorities, and recognizes that there may be new ways to do things."
To enable this to happen, consumers have to get involved. "There needs to be grassroots support for the livable community concept, for the idea that a livable community is a community that values people of all ages and abilities," said Sandy Markwood. "People need to start asking whether they live in a community that is a good place for people to grow up and grow old in, regardless of ability." This requires empowering consumers to make assessments of their communities by providing education, such as through the National Resource Center on Livable Communities, one of the recommendations in NCD's Creating Livable Communities report; tools such as checklists to help them evaluate housing, transportation, services, and other aspects of their communities; and support to help them take action to make their communities more livable.
Judging by the enthusiasm exhibited by panel participants and audience members in these discussions and their insightful comments, it seems fair to say that the livable community concept has real potential to help people think creatively, identify and collaborate around common issues, and improve quality of life for people of all ages and abilities.
1National Council on Disability (2004). Livable Communities for Adults with Disabilities, p. 7. Washington, D.C.: National Council on Disability.
2National Council on Disability (2005). The State of 21st Century Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities, p. 15. Washington, D.C.: National Council on Disability.
3Livable Communities for Adults with Disabilities, p. 84.