Livable Communities for Adults with Disabilities

National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax

This report is also available in alternative formats and on the award-winning National Council on Disability (NCD) Web site (www.ncd.gov).

Publication date: December 2, 2004

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

An independent federal agency working with the President and Congress to increase the inclusion, independence, and empowerment of all Americans with disabilities.

December 2, 2004

The President

The White House Washington, DC 20500

Dear Mr. President:

On behalf of the National Council on Disability (NCD), I am very pleased to submit a report entitled Livable Communities for Adults with Disabilities. The report was developed with the advice of a consumer advisory committee from around the country.

The advances in America's policy and programs on behalf of citizens with disabilities have been inspiring. Notwithstanding the individual social policy and legislative achievements of the past 50 years on behalf of Americans with disabilities, however, we need to establish a cohesive public policy agenda in the coming years. We need a common vision, with clear objectives, that speaks to the strength of our commitment to our citizens and the quality of their lives, and one that addresses the challenges facing us in the years ahead.

Communities in the United States are faced with increasingly difficult choices and decisions about how to grow, plan for change, and improve the quality of life for adults with disabilities as well as elders who may develop disabilities as they grow older. People are living longer lives today than ever before and the population of people aged 65 and older is growing rapidly. One in five people in the United States will be over the age of 65 by 2030. 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 possible that the number of people aged 65 and older with disabilities will also grow, particularly those 75 years of age and older.

Livable Communities for Adults with Disabilitiesoffers a compelling vision for our nation. It articulates the elements of a livable community, highlights existing examples of livable communities in the United States today, which can serve as models for others, and describes how communities can develop and sustain their livability features.

Our recommendations are in line with the focus of your New Freedom Initiative's emphasis on community integration, participation, and enhancement of the independence of people with disabilities at home, at work, and throughout the course of their daily lives. NCD stands ready to work with you and stakeholders inside and outside the government to see that the agenda set out in the attached report is implemented.

Sincerely,

Lex Frieden Chairperson National Council on Disability

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the U.S. House of Representatives.)

1331 F Street, NW „ Suite 850 „ Washington, DC 20004 202-272-2004 Voice „ 202-272-2074 TTY „ 202-272-2022 Fax „ www.ncd.gov

National Council on Disability Members and Staff

Members
Lex Frieden, Chairperson, Texas
Patricia Pound, First Vice Chairperson, Texas
Glenn Anderson, Ph.D., Second Vice Chairperson, Arkansas
Milton Aponte, J.D., Florida
Robert R. Davila, Ph.D., New York
Barbara Gillcrist, New Mexico
Graham Hill, Virginia
Joel I. Kahn, Ph.D., Ohio
Young Woo Kang, Ph.D., Indiana
Kathleen Martinez, California
Carol Novak, Florida
Anne M. Rader, New York
Marco Rodriguez, California
David Wenzel, Pennsylvania
Linda Wetters, Ohio

Staff
Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Allan W. Holland, Chief Financial Officer
Julie Carroll, Attorney Advisor
Joan M. Durocher, Attorney Advisor
Martin Gould, Ed.D., Senior Research Specialist
Geraldine Drake Hawkins, Ph.D., Program Analyst
Pamela O’Leary, Interpreter
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Cler

Acknowledgement

The National Council on Disability deeply appreciates the groundbreaking research in the development of this report by Penny Feldman, Mia Oberlink, Michal Gursen, and their colleagues at the Visiting Nurse Service of New York, Center for Home Care Policy and Research (http://www.vnsny.org/research).

Contents

Executive Summary

Introduction

Framework of a Livable Community for Adults with Disabilities

Strategies and Policy Levers

Lessons Learned and Recommendations

Provide affordable, appropriate, accessible housing

Ensure accessible, affordable, reliable, safe transportation

Adjust the physical environment for inclusiveness and accessibility

Provide work, volunteer, and education opportunities

Ensure access to key health and support services

Encourage participation in civic, cultural, social, and recreational activities

Chapter 1: Elements of Livable Communities for Adults with Disabilities

An Introduction to Mr. Clyde Boger

Population Growing Older

Loss of Independence: A Common Concern

Making Lifelong Independence Possible

Adults with Disabilities Speak Out

The Livable Community for Adults with Disabilities Framework

Chapter 2: Provide Affordable, Appropriate, Accessible Housing

Home of One's Own

Chapter 3: Ensure Accessible, Affordable, Reliable, Safe Transportation

Coordinated Transportation Systems

Job Access and Reverse Commute (JARC) Programs

Demand-Response Transit Options: Expansion of Accessible Taxis

Tax Support for Improved Transit

Advanced Technology to Improve the "Navigability" of Public Transit

Chapter 4: djust the Physical Environment for Inclusiveness and Accessibility

Chapter 5: Provide Work, Volunteer, and Education Opportunities

Tax Incentives

New Freedom

The TTW and Self-Sufficiency Program

Job Accommodation Network

Computer/Electronic Accommodations Program

Chapter 6: Ensure Access to Key Health and Support Services

Supportive Housing Initiatives110

Chapter 7: Encourage Participation in Civic, Cultural, Social, and Recreational Activities

Chapter 8: Putting It All Together

Strategies and Policy Levers to Affect Change

Lessons Learned and Recommendations

Provide affordable, appropriate, accessible housing

Ensure accessible, affordable, reliable, safe transportation

Adjust the physical environment for inclusiveness and accessibility

Provide work, volunteer, and education opportunities

Ensure access to key health and support services

Encourage participation in civic, cultural, social, and recreational activities

Strategic Plan 2000: Making San Mateo County Livable for Older Adults and Adults with Disabilities

Introduction

Background

The Process of Developing a Strategic Plan

Strategic Plan 2000: Goals, Objectives, and Progress

Provide affordable, appropriate, accessible housing

Ensure accessible, affordable, reliable, safe transportation

Adjust the physical environment for inclusiveness and accessibility

Provide work, volunteer, and education opportunities

Ensure access to key health and support services

Encourage participation in civic, cultural, social, and recreational activities

Epilogue: Vision of a Livable Community

Resources

Appendix: Mission of the National Council on Disability

Overview and Purpose

Specific Duties

International

Consumers Served and Current Activities

Statutory History

Endnotes

Executive Summary

Executive Summary

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 at both public and private facilities.¹

Introduction

Communities in the United States are faced with increasingly difficult decisions about how to plan for change, and increase and improve the quality of life for adults with disabilities as well as elders who may develop disabilities as they grow older. People are living longer lives today than ever before and the population of people aged 65 and older is growing rapidly. 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.

Adults with disabilities and elders want to live in their own homes as independently as possible for as long as possible. People want to live in supportive communities that encourage independence and a high quality of life. To facilitate independence, people often need the same kinds of services. In addition, people want to remain contributing members of the community. It makes sense, therefore, for the disability community and aging network--groups that traditionally work separately--to collaborate, align goals, and share resources to address the challenges and opportunities ahead.

As the demographic profile of the United States changes, there will be an increased need for livable communities that support the needs and aspirations of people with disabilities and older adults. To meet this demand, three factors must be considered: (1) the elements of a livable community; (2) existing examples of livable communities in the United States today that can serve as models for others; and (3) how these communities develop and sustain livability features.

Framework of a Livable Community for Adults with Disabilities

"Livable community" is a fluid term whose definition may change depending on the context and such considerations as community capacity, organizational goals, and the needs and desires of particular groups of citizens. For the purposes of this report, a Framework of a Livable Community for Adults with Disabilities was constructed to define the elements that need to be in place for a community to be considered livable for people with disabilities. It is clear, however, that the elements that make a community livable for people with disabilities make it a livable place for all members of the community. Thus, in improving its livability for one particular group of constituents, the community actually accomplishes considerably more.

The Framework of a Livable Community for Adults with Disabilities is inspired, in part, by a similar framework developed for the AdvantAge Initiative, a project that helps communities measure and improve their "elder-friendliness."² It was informed further by research on the concept of livability, results of recent surveys of people with disabilities, countless interviews with key informants and people with disabilities, and a focus group session involving people with disabilities aged 30 and older in Washington, D.C. Similar themes emerged from each of these activities and were synthesized into the framework. Thus, a Livable Community for Adults with Disabilities is defined as one that achieves the following:

• Provides affordable, appropriate, accessible housing
• Ensures accessible, affordable, reliable, safe transportation
• Adjusts the physical environment for inclusiveness and accessibility
• Provides work, volunteer, and education opportunities
• Ensures access to key health and support services
• Encourages participation in civic, cultural, social, and recreational activities

Within each of these six areas, a livable community strives to maximize people's independence, assure safety and security, promote inclusiveness, and provide choice.

While no one community in the United States has addressed all six of these livability goals to equal degrees, many states, counties, and local communities have made extraordinary improvements in their livability for people with disabilities in one or even several of these areas. Their experiences and achievements can serve as inspiration and provide replicable "best practices," which other communities can emulate as they strive to become more livable.

Strategies and Policy Levers

Community efforts profiled in this report have employed a variety of strategies and policy levers to (1) expand access to affordable housing, transportation, and employment opportunities; (2) make the built environment more accessible; (3) reconfigure health and support service delivery systems to be more in line with the needs of people with disabilities; and (4) promote the social and civic engagement of these communities.

Nearly every initiative included in the report has depended, to one degree or another, on strategic partnerships that have worked together to achieve the following goals: (1) leverage resources, (2) reduce fragmentation in the service delivery system, (3) address consumers' needs in a coordinated and comprehensive manner, (4) provide choice, and (5) implement policies and programs that help people remain independent and involved in community life. To maximize the potential for success, communities should use one or more of the following strategies and policy levers as well as develop all-important partnerships. These strategies and policy levers can and should be used at every level of government--including federal, state, county, and local--to affect change in any of the areas included in the Framework of a Livable Community for Adults with Disabilities:

In addition to these strategies and policy levers, successful community initiatives often depend on the ingenuity and persistence of community members who are able to mobilize resources, generate excitement, and stimulate action in their communities on behalf of people with disabilities and the elderly.

Lessons Learned and Recommendations

A number of lessons can be gleaned from the community initiatives described in this report, many of which can serve as recommendations to other communities that are planning to make greater livability a priority issue in their locales.

Provide affordable, appropriate, accessible housing

People with disabilities, including the focus group participants, say that satisfaction with housing arrangements is the determining factor for remaining in or moving from their communities, and this satisfaction depends on two key factors: housing affordability and accessibility. "With stable housing, people with disabilities are able to achieve other important life goals, including education, job training, and employment." ³ According to the Public Policy Collaboration, however, people with disabilities "face a crisis in the availability of decent, safe, affordable, and accessible housing," ⁴ and those with low incomes are the most likely to be affected by this shortage. One estimate says that as many as 1.8 million people with disabilities who receive Supplemental Security Income (SSI) benefits have severe housing problems.⁵

Model community efforts profiled in this report, which have expanded homeownership and rental housing options for people with disabilities, have developed strong partnerships and collaborations between the affordable housing system and the disability community. These relationships ensure that the housing created will meet the needs and preferences of people with disabilities and/or elders. Additional priority action steps in the area of housing include the following: (1) providing incentives for developers to maintain existing affordable housing units and/or increase such stock; (2) providing tax credits to help individuals with disabilities and seniors remain in the homes where they currently live; and (3) expanding awareness and encouraging incorporation of universal design and accessibility features into existing or new housing stock.

Ensure accessible, affordable, reliable, safe transportation

According to the 2003 National Transportation Availability and Use Survey, about one in four individuals with disabilities needs help from another person and/or assistive equipment, such as a cane, walker, or wheelchair, to travel outside the home. Nearly 6 million people with disabilities have difficulty getting the transportation they need, because public transportation in the area 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. The survey also found that more than 3.5 million people in the United States never leave their homes, and more than half of the homebound are people with disabilities. Of these, more than half a million indicate that, because of transportation difficulties, they never leave home.⁶

Providing accessible, affordable, reliable, and safe transportation is an enormous challenge to communities. To address this challenge, some states and counties have been thinking systemically. Priority action steps in the area of transportation include the following: (1) creating "coordinated transportation systems" that combine all the disparate transportation services and funding streams into one system that is more efficient, cost-effective, and universally accessible; (2) computerizing and centralizing dispatch systems to make on-demand transportation more efficient and less frustrating for consumers; and (3) exploring the use of new technology to help people with disabilities and the elderly navigate their community's thoroughfares and transportation options.

Adjust the physical environment for inclusiveness and accessibility

Since the passage of the Americans with Disabilities Act (ADA), noticeable accommodations have been made in communities large and small to improve access for people with disabilities. In most communities, however, expanding access to the physical environment is still a work in progress. One of the greatest obstacles to improving access for people with disabilities is the expense associated with altering the built environment and making other needed accommodations. In addition to cost, in larger cities or towns, the sheer volume of work to be done causes delays in making necessary changes. In older communities where there are many historic structures that need to be retrofitted for accessibility, conflict sometimes arises between preservationists and disability advocates. An equally significant obstacle is lack of awareness among the public about the difficulties people with disabilities face as they try to negotiate the physical environment.

Fortunately, there are many resources available at all levels of government to help communities address these and other obstacles to accessibility. Priority action steps in this area include the following: (1) increasing awareness among community members by providing them with sensitivity training so that they can experience first-hand the access problems people with disabilities face; (2) educating city planners and public officials about how lack of access affects elders and people with disabilities and what they can do as professionals to improve the situation; (3) advocating for variances to zoning ordinances to accelerate improved access to the built environment.

Provide work, volunteer, and education opportunities

A fundamental principle of Title I of ADA is that people with disabilities who want to work and are qualified to work must have an equal opportunity to work. However, unemployment among people with disabilities remains unacceptably high. The 2004 National Organization on Disability (N.O.D.)/Harris Survey of Americans with Disabilities⁷ 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%).

Priority action steps to increase employment opportunities for and encourage the hiring of people with disabilities include the following: (1) using technology to facilitate education and training programs, to provide telework opportunities, and to match qualified job candidates with employers; (2) increasing awareness among community members about the value of employing people with disabilities; (3) setting an example by hiring people with disabilities for positions within government agencies; (4) helping businesses make reasonable accommodations for employees with disabilities by providing them with needed funding and/or technical assistance; and (5) removing any remaining disincentives to work, such as the potential loss of health care, SSI, or other entitlements.

Ensure access to key health and support services

Results of a survey by the Henry J. Kaiser Family Foundation reveal that, despite their well above average use of health care services, individuals with disabilities face greater barriers to health care access than does the rest of the population.⁸ People with disabilities have trouble finding doctors who understand their disabilities and are less likely than the general population to receive the range of recommended preventive health care services. In sum, people with disabilities face a fragmented health care delivery system that does not respond to their wishes or needs.

Priority action steps in the area of health care include the following: (1) designing health care systems that are consumer directed and provide care coordination to ensure that the right kind of care is provided to beneficiaries; (2) 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; (3) 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 (4) providing support services that are linked to housing to increase the availability and efficiency of service provision.

Encourage participation in civic, cultural, social, and recreational activities

According to the 2000 N.O.D./Harris Survey of Community Participation, overall, "people with disabilities feel more isolated from their communities, participate in somewhat fewer community activities, and are less satisfied with their community participation than their counterparts without disabilities." ⁹ The survey attributes the lower rates of participation among people with disabilities, in part, to lack of encouragement from community organizations. A community can hardly be called livable for people with disabilities if the people are not involved in the community's civic, cultural, or social activities.

The survey results suggest that it is not enough for community organizations to simply offer activities and provide information about them to people with disabilities. Thus the priority steps in this area include the following: (1) encouraging community organizations to actively reach out to people with disabilities to include them in activities, and (2) ensuring that people with disabilities have access to all of the opportunities that are offered to other members of the community.

It is reasonable to assume that communities will always face financial and structural obstacles to becoming more livable for people with disabilities. Intangible obstacles, like the public's lack of awareness and understanding of the difficulties people with disabilities face in their communities on a daily basis, are perhaps even more pervasive and difficult to overcome. But, as the community examples in this report illustrate, where there is political will, there are many possible, creative ways to surmount obstacles that prevent communities from being more livable for us all.

Chapter 1: Elements of Livable Communities for Adults with Disabilities

An Introduction to Mr. Clyde Boger

As public housing projects go, Amsterdam Houses in New York City is better than many. The location--a busy neighborhood close to one of the city's cultural hubs--couldn't be better. The housing complex's 14 buildings are spaced widely apart, and the grounds are park-like. But despite their proximity to elegant theaters and concert halls, Amsterdam Houses can seem worlds away. Most residents have little in common with the well-dressed patrons who can afford to attend the cultural offerings and elaborate opening parties at neighboring Lincoln Center.

We arrived at Mr. Clyde Boger's building at 2:00 p.m. on a cold weekday afternoon. The building's intercom wasn't working and the front door of the building was unlocked, but we could open it only after pressing against it with all our might. The elevator--which was graffiti-free--took us to the 11th floor. We knocked on the door of the apartment where Mr. Boger has lived for 53 years. Such long-term tenancy is not unusual at Amsterdam Houses: 92 percent of the 600 or so residents aged 65 and older have lived there for 30 years or more, and more than half of these for at least 50 years. Like Mr. Boger, the majority of older residents of Amsterdam Houses are people of color (88%), live alone (56%), and have incomes below 200 percent of poverty (63%).

Mr. Boger promptly opened the door and invited us in. He looked younger than his 85 years, and his darkened glasses and need to hold on to the wall and furniture to navigate through the apartment were the only visible indicators of his many health problems. Mr. Boger is legally blind and has glaucoma. He had had successful cataract surgery in both eyes more than three decades ago, but after having a stroke in 1983, he lost most of his vision. He also has hypertension, high cholesterol, diabetes, and a heart pacemaker. But he cheerfully led us into the cramped living room of his tiny apartment, and as we sat on the small sofa, we observed a cloud of dust rise in the streaks of sunlight streaming into the overheated room.

As we waited for Mr. Boger to get comfortable, we looked around and imagined that the room had changed little since 1951, when he and his wife moved in. Now Mr. Boger lives alone. His wife, a teacher, died in 1985 of breast cancer, and Mr. Boger retired early to care for her, forfeiting some retirement income as a result. Then, their only son, who worked for the city's transit department, died seven years later of colon cancer at the age of 41. We wanted to know how he managed on his own, given his multiple health problems. In response, Mr. Boger told us about his routine:

I get up at about 9:30 and make myself breakfast--usually cereal or toast. Then I sit in the living room and listen to the news on the radio or television or to my jazz records--I used to hang out at the Cotton Club and the Savoy when I was young, you know. The Meals on Wheels people deliver lunch between 12:30 and 1:00--they were here just before you came. After lunch, I take a nap, and in the afternoon I have to take my medication, for my high blood pressure, cholesterol, diabetes, and bladder problems. They also gave me three different eye drops. Then I make dinner--last night I made chicken fricassee--and I listen to the radio or TV, mostly news, until bedtime.

Noticing a crutch in the corner of the room, which he did not use while we were in the apartment, we ask Mr. Boger how often he goes out:

Oh, I go to the Veterans Administration Medical Center four to five times a month. I usually go by taxi. Sometimes a volunteer from the community center comes around and walks me to the center for meals or activities, but sometimes I just take a taxi over there-- it's just three dollars. A volunteer from the democratic club comes by to take me to meetings and brings me back. Did you know I was a coordinator for the Board of Elections for 40 years, and I started the first tenant patrols around here in the 1970s?

We ask Mr. Boger about food shopping and other household chores:

I've got plenty of neighbors and friends who always stop by and ask if I need something from the store. And when my wife was alive she made friends with this family that had a little daughter she loved like she was her own--you know, the daughter we never had. Now that little girl is 43 and has two sons of her own, 4 and 13. She lives down the block and she calls me every day and comes in and does the cleaning and shopping for me. Her mother, who's now in her 60s, does my laundry. I sure enjoy it when those boys come over!

When we ask him whether he plans to get surgery for the glaucoma, he shakes his head "no" and explains:

I'm 85 years old. I can see what I need to see. I get along fine and I don't have any problems. I have food to eat, clean clothes, a decent place to live, friends nearby, and whenever I need something I know who to call.

Certainly, these are the basic ingredients of an independent life. But then he tells us the harrowing story of what happened to him just a few months ago when he passed out at home because his blood sugar was so low. He couldn't see but managed to crawl to the telephone and call his neighbor. Luckily she was home and was able to call 911 and summon an ambulance for him.

We chat a bit longer, mainly about Mr. Boger's favorite topic--politics. He is well informed and freely voices his opinions on the top issues of the day. Before we know it, it is 4:00 p.m., and we realize that we have made Mr. Boger miss his nap. We thank him for his time and get up to leave. Although he has many friends and claims not to be lonely, we can tell that he enjoyed having visitors and the opportunity to talk. We stop at the door, shake his hand good-bye, and on the way out wonder how long Mr. Boger's proud independence will last.

A Population Growing Older

Mr. Boger began his long education in self-reliance at an early age. He was orphaned as a child and his four sisters abandoned him by the time he was 7 years old, leaving him to live with neighbors and fend for himself. He worked his way through school, including three years of college, and became economically independent. Happy and productive in his youth and middle age, Mr. Boger's life took a tragic turn when his wife was diagnosed with breast cancer. During the years after she died, he faced further losses--of his son, his robust health, and his sight and mobility. Mr. Boger's story is not unusual. Like Mr. Boger, 42 percent, or more than 1.4 million Americans 65 years of age or older, live alone; 14 percent, or more than 4.7 million, have a sensory disability involving sight or hearing; and 20 percent, or more than 6.7 million, have difficulty going outside the home.¹⁰

Several studies published in recent years¹¹ show that overall disability rates for people 65 and older are falling, although some researchers believe that these falling rates mostly apply to Instrumental Activities of Daily Living.¹² In either case, the fact remains that people are living longer lives today than ever before and one in five people in the United States will be over the age of 65 by 2030. This combination of trends raises the prospect that the number of people 65 and over with disabilities will grow along with the general population of elders, particularly among those 75 years of age and older. Aside from genetic make-up, several risk factors--all of them present in Mr. Boger--increase the chances that a person will become disabled as he or she grows older:

Age: While only 18.6 percent of people 16 to 64 years of age have a disability, 41.9 percent of those aged 65 and older have a disability. Among those aged 75 and older, the percentage is even higher--54 percent.¹³

• Race: Among those 65 and older, Asians and non-Hispanic whites have the lowest disability rates (40.8% and 40.6%, respectively), while blacks and Native Americans have the highest (52.8% and 57.6%, respectively).¹⁴
• Income: Older people with low incomes are at higher risk for disability. While 40 percent of those with incomes above the poverty level have a disability, 56 percent of those with incomes below the poverty level have a disability.¹⁵

To accommodate these demographic trends, changes must be made that, according to the American Association of Retired People (AARP) Report to the Nation on Independent Living and Disability, cause a "major improvement in the quality of life" for people with disabilities.¹⁶

Loss of Independence: A Common Concern

Mr. Boger worked hard all his life. He was a combat medic in France during World War II and upon returning home worked as a medical technician for the remainder of his career. He was an exceptionally active member of his community and provided countless volunteer hours to various causes. He was a full-time caregiver to his wife and his son. And, until his stroke, which left him virtually blind at age 64, he was not disabled in any other way. To the casual observer, Mr. Boger, who lost his vision in his seventh decade after a lifetime of sight, might seem to have little in common with a younger person who has been living with blindness since birth. People with disabilities are just as diverse as people without disabilities, if not more so. According to Beyond 50 2003 A Report to the Nation on Independent Living and Disability,which was based in part on the 2000 AARP/Harris Interactive Survey of Persons 50 and Older with Disabilities¹⁷ survey of more than 1,100 people aged 50 and older with disabilities, people with disabilities may be "an even more heterogeneous population because of wide variations in the types of disabilities they experience, the age of onset of these disabilities, and their life experiences." ¹⁸ But, as the report continues, when people with disabilities talk about what they most value--and fear--in life, cross-cutting themes become evident:

Loss of independence, their number one fear, and issues of control over decision making emerge as major themes. Another theme is the desire to engage in ordinary activities that help connect us to others and to take care of ourselves as we age, such as keeping in touch with family and friends, doing household chores, and engaging in exercise and physical activity.¹⁹

And, when it comes to rating their communities on livability for people with disabilities, the following emerged:

Overall, respondents rate their communities as meriting only a B/C+ as a place to live for people with disabilities or health conditions such as theirs. Persons age 50 to 64 and those with very severe disabilities are the groups most likely to give their communities a "D" or "below average." ²⁰…Lack of dependable and accessible transportation is the biggest problem. The next most important problem is the lack of community services to "help you maintain your independence as you grow older."²¹

Making Lifelong Independence Possible

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 at both public and private facilities.²²

According to the AdvantAge Initiative National Survey of Adults Aged 65 and Older, 93 percent of older people say that they would like to live in their own homes as independently as possible for as long as possible.²³ The same holds true for adults with disabilities. According to the AARP/Harris survey, "persons 50 and older with disabilities, particularly those age 50 to 64, strongly prefer independent living in their own homes to other alternatives."²⁴ Even if they were to move, 69 percent of people aged 50 and over say they would prefer to move to another home or apartment.²⁵ As the AARP/Harris survey illustrates, people with disabilities want access to the same places, things, and opportunities that people without disabilities are able to access. They want to feel safe and to learn, work, and contribute in significant ways. They want to participate in social activities and have relationships with others. In short, people with disabilities want to achieve their full potential and live meaningful lives in communities that actively include, rather than passively isolate, them. The extent to which people with disabilities are able to achieve these goals depends on a number of factors, some of which can be discerned in Mr. Boger's own story.

The following factors allow Mr. Boger to continue living as independently as possible in the community.

Affordable and accessible housing: While most people might not choose to live in public housing if they had other options, for Mr. Boger and other elders living in the Amsterdam Houses complex, this is a blessing. Mr. Boger spends $495 per month on rent for his apartment, a bargain by New York City standards, but nonetheless one that takes a big bite out of Mr. Boger's civil service annuity of $1,471 per month. Still, this is acceptable to him, given his modest needs in other areas of his life. As he comments on his income, "It's really not enough, but I can survive on it." For the time being at least, accessibility is not an issue for Mr. Boger: There are no stairs leading into his building, and the elevator takes him within three or four steps of his front door. If his disability status were to change, however, access might well become a problem.

Comprehensive health care: Perhaps the most important factor that makes Mr. Boger's income sufficient is that he does not spend any of it on health care. With his multiple health problems that must be monitored continually, Mr. Boger is fortunate to be eligible for care at the Veterans Administration Medical Center.²⁶ The Medical Center has a Visual Impairment Service Team Program (VIST) that helps legally blind veterans adjust to severe vision problems and a Home-Based Primary Care Program in which a team of health care professionals provide at-home care to patients. Mr. Boger, however, prefers to get his care on site. He goes to the Medical Center several times a month to see the cardiologist for his pacemaker, the podiatrist for diabetes-related foot care, the urologist for bladder problems, and other doctors and counselors as needed, all at the same location. Every three months he picks up his medications at the Medical Center. All this care is provided to Mr. Boger without any out-of-pocket expenses.

Accessible transportation: Trips to the Medical Center are Mr. Boger's principal outings. He tried Access-A-Ride (a paratransit service in the city) a couple of times, but the driver was late, he says, and not very courteous, so Mr. Boger prefers to take a taxi--truly an on-demand transportation system. Other than his crutch, which he uses when he leaves the apartment, he does not need assistance to take the elevator down to the street. Usually he is able to hail a taxi right outside his building. Sometimes, if a taxi doesn't come by when he needs it, he walks a half-block down to the corner to find one. He complains about this, but, in a pinch, the short walk is still manageable for him. He returns home by taxi as well. Although a taxi ride from West 65th Street, where Mr. Boger lives, to East 23rd Street, where the Medical Center is located, is expensive for someone of modest means like Mr. Boger, the fact that he takes a cab only about once a week makes it affordable to him. A less-expensive alternative would be the city bus system, which is heavily used by older people. All of the vehicles in the fleet are "kneeling" buses, which are also wheelchair accessible, and they run 24 hours a day, seven days a week. Although it is often slow-going in traffic, the bus is a safe, affordable, and pleasant method of transportation for countless older people in the city. The fact that transportation options exist in his community is a key factor in Mr. Boger's ability to stay independent.

Community-based services: Although Mr. Boger did not talk about it much during our interview, we know that professionals in the community are looking out for him and are available whenever he needs them. The Lincoln Square Neighborhood Center (LSNC), a few short blocks from Mr. Boger's front door, provides recreation, education, and health-related services to residents of all ages living in the Amsterdam Houses and surrounding community. LSNC has a Naturally Occurring Retirement Community-Supportive Services Program (NORCSSP), financed through public-private partnerships that combine revenues and in-kind supports to organize and provide a range of coordinated health care and social services and group activities on site. A social worker at LSNC is very familiar with Mr. Boger's situation and monitors it without being intrusive. She arranged for Mr. Boger to receive Meals on Wheels lunches, and she sees to it that staff members or volunteers pick up Mr. Boger at his apartment and walk him to the center for meals and activities whenever he feels like joining the many other seniors who congregate at the nicely appointed center. The fact that it is located within the housing complex makes it accessible to all residents of Amsterdam Houses, regardless of age and ability.

A social network: Ironically, it is Mr. Boger's reliance on others that enables him to continue living independently in his own home. While still able to meet his personal care needs, like dressing, bathing, and getting around inside his home--and even outside occasionally for very short distances--Mr. Boger is unable to perform some of the instrumental activities of daily living,such as food shopping or doing housework, without the help of others. On several occasions in the past, Mr. Boger availed himself of home attendants from a local home care agency, but he says he prefers to be assisted by people he knows--his neighbors and friends. Fortunately for him, he has a wide social network that he and his family cultivated over a period of years, both casually in the housing development where they lived and through Mr. Boger's extracurricular activities, such as his involvement in union activities (he was president of the union for eight years) and through his volunteerism with political organizations in the community. The dense, mixed-age urban neighborhood in which Mr. Boger has resided for more than 50 years, although a drawback in some other respects, has facilitated his interaction with people of all ages and mitigated the isolation that so many older people face. Thanks to this extensive support network, Mr. Boger is managing remarkably well at home.

Contributions to the community: Despite his health problems, Mr. Boger continues to contribute to his community--a habit he got into a long time ago. Claiming to be "the oldest person living here," Mr. Boger acts as the unofficial grandfather to the children and teenagers in his building, as well as the two sons of the woman who helps him so much at home. He continues to attend meetings of the democratic club, voice his views, and act as a mentor to the younger attendees, who he thinks needs some lessons in principles and integrity. These activities are certainly less extensive than what he was used to in the past, but at this point in his life, they seem just about right.

As Mr. Boger's situation demonstrates, people who become disabled in later life are able to continue living in and contributing to the community when the environment, health and social services systems, and so-called "informal care network" support their independence.

Adults with Disabilities Speak Out

The elements that help keep Mr. Boger independent and the community "livable" for him are not very different from those that make communities livable for younger adults with disabilities. The AARP/Harris survey, for example, demonstrates that many of the factors that make life in the community possible for 85-year-old Mr. Boger are applicable to younger adults with disabilities. Keeping up social connections, living in affordable and accessible homes, being able to travel outside the home at will, having access to transportation when needed, participating in outside activities are some of the key factors that AARP/Harris survey respondents say help them maintain their quality of life in their communities.²⁷

We met with a group of 12 racially diverse people with disabilities, ranging in age from 30 to the late 50s (with one individual in his 70s), in Silver Spring, Maryland, to solicit opinions about the various aspects of communities that make them good places for adults with disabilities to live, as well as those that impede livability. In the course of the two-hour discussion, these 12 focus group participants echoed the responses provided by respondents to the AARP/Harris survey, and they made it clear that aspects of communities that facilitate independent living are those they cherish the most.

Affordable, accessible, and safe housing: Throughout the focus group session, the theme of accessible, affordable, and safe housing appeared and reappeared. Participants repeatedly stressed the importance of living in a place of their own, and those who lived alone emphasized how much they "like it." Two of the participants felt they were "blessed" to have moved into their current residences from nursing homes, thus regaining the independence that had been lost when they lived in an institution. One participant felt especially grateful to have a place of her own after a six-month period of homelessness, including one month she spent in a shelter. Focus group participants said that satisfaction with housing arrangements is the primary motivator to stay in or move from their communities. While most of the participants were living in subsidized housing that was affordable to them, some had to initiate modifications to make their homes fully accessible. Participants identified neighborhood crime and the ability to exit from one's home easily in case of fire or other emergency as safety issues.

Ready access to transportation and the physical environment: Dependable public and special transportation was mentioned frequently by the focus group participants as being essential for travel around the community--to work, to the store, to the doctor, to church, and elsewhere. Proximity of stores, libraries, laundry facilities, recreation, and other necessities helps make life easier as well, the focus group participants said. Some described special transportation as consistently unreliable, with the burden frequently placed on the individual to make travel accommodations because of the lack of a central information system. Sidewalks and curb cuts and thorough snow and ice removal were mentioned as mobility facilitators. Some participants expressed frustration over the lack of planning and provisions for accessibility during the ongoing process of redevelopment in a number of communities. While some accommodations for pedestrians are made during construction, they are usually unsuitable for people in wheelchairs.

Work, education, and volunteer opportunities: Participants in the focus group described their eagerness to learn new skills and work, the challenges and rejections they faced when looking for work, and the fears that prevent them from seeking work, including the fear of losing Medicaid, Medicare, or Supplemental Security Income (SSI) benefits. Participants were eager to embark on new careers and hoped to be provided with learning opportunities appropriate for their needs. Several participants expressed how important it was for them to contribute to the community in whatever way they are able.

Social and civic engagement: A "community" is frequently defined in terms of its physical location, but as the focus group participants pointed out, the definition should include the social "climate" as well. Several members of the group stressed that having neighbors who are friendly, or at least respectful, enhances the environment, making it a more welcoming and pleasant place to live. For some, living in a racially and ethnically diverse community is a strong preference, and others voiced the importance of going out and actively socializing with neighbors during block parties or other neighborhood events. Several of the focus group participants pointed out that measures taken to improve life for adults with disabilities confer benefits on others in the community as well, and any advocacy on the part of people with disabilities should be inclusive. As one participant put it: "We have a voice in the community, and we need to use it to help other people, not just ourselves."

The Livable Community for Adults with Disabilities Framework

Community is a general term that people tend to define for themselves, depending on circumstances. Speakers of a particular foreign language in a U.S. city, for example, might consider themselves and their linguistic compatriots a "community," regardless of where in the city they live. More frequently, however, community is defined geographically and refers to the immediate area in which people live, such as a neighborhood. The neighborhood may refer to a larger part of the city or town, such as the "near north side" of Chicago or Georgetown in Washington, D.C.; a smaller section of the city, such as a series of contiguous blocks; or even, as in Mr. Boger's situation, a set of buildings located in a particular neighborhood.

Livable community also has multiple definitions that change depending on the context and such considerations as community capacity, organizational goals, and the needs and desires of a particular group of citizens.. For example, the American Institute of Architects' (AIA) definition of a livable community is oriented toward urban planning and community development. According to the AIA, for a community to be considered livable, it must "create a neighborhood identity, provide choices, conserve the open landscape, plan on a human scale, encourage mixed-use development, vary transportation options, preserve urban centers, and protect environmental resources."²⁸ With a specific constituency in mind--older people--the AdvantAge Initiative uses a framework with four "domains" to define a livable, "elder-friendly" community. Thus, in this context, a livable community for older people is one that (1) addresses basic needs for such things as food, transportation, and information; (2) optimizes physical and mental health and well-being by reducing barriers to care and promoting wellness; (3) maximizes independence by providing resources to help the elderly live comfortably at home; and (4) promotes social and civic engagement so that they remain connected to others and participate in community life.²⁹ In the AdvantAge Initiative, these four "domains" refer to community capacity relating specifically to older community residents. It is not difficult, however, to see that a community that successfully addresses these four domains becomes a good place for adults of all ages and abilities to live.

For purposes of this study, we have created a framework that defines the elements of a "livable community" for another specific constituency--adults with disabilities (see Figure 1). This framework synthesizes the observations made about Mr. Boger's situation, comments made by focus group participants, results of the AARP/Harris survey, and the 2000 National Organization on Disability (N.O.D.)/Harris Survey of Americans with Disabilities, as well as additional background research conducted for this study. In the next chapter, we will highlight examples of communities that have been addressing one or more of the elements of this framework and explore what these communities did to become more livable for residents with disabilities.

Figure 1. Framework of a livable community for adults with disabilities.

Chapter 2: Provide Affordable, Appropriate, Accessible Housing

Nine years ago, when Dennis Fitzgibbons, Director of Operations at Alpha One, a Center for Independent Living with offices in Bangor and South Portland, Maine,³⁰ and his family moved from Massachusetts to Yarmouth, Maine, they contacted a real estate agent to help them find a ranch house with wide doorways and large bathrooms to accommodate Dennis' wheelchair. Thus began an odyssey that eventually took the family through half a dozen real estate agents, who just could not understand the family's needs, and visits to countless houses that did not come close to being accessible. "We would show up to see a house that the agent said was perfect for us, only to find that it was a two-story Cape," Dennis explains. "Oh, I thought you would really like this house," the agent would say, by way of explanation. After many such false leads, the Fitzgibbons family met an agent "who really stuck with us," says Dennis. "She was bound and determined to find us a house and really hung in there. But I remember that at one point, totally frustrated, she threw up her hands and said ‘Where on earth do people with disabilities live anyway?'"

In time, the family did find a home that met most of their requirements, but some exterior modifications needed to be made, including installation of a ramp leading to an entrance door at the back of the house and repaving the driveway area to create a smooth surface for Dennis' wheelchair. An indoor ramp had to be constructed in place of the original stairways that connected two parts of the house, but luckily no other major interior renovations, like widening doorways or renovating bathrooms, were required. Still, the Fitzgibbons family spent about $20,000 to make the necessary modifications. "Because we moved from Massachusetts, where home costs are higher, we had the money for a down payment on a new home and a little left for the renovations," Dennis explains. "There are some home modification programs available for those with lower incomes, but we were not eligible." If they had needed to take out a loan to pay for the renovations, however, they would have been eligible for the state's Kim Wallace Adaptive Equipment Loan Program. This program is a $6.5 million revolving loan fund in which eligible residents of Maine may borrow up to $100,000 to purchase assistive technology (AT) or adaptive equipment to enhance their independence.³¹ Home renovations are an acceptable adaptation.

The Fitzgibbons' home is now thoroughly livable, although Dennis says that some day he would like to redo the kitchen. But that project will have to wait. "With two children at home," says Dennis, "we have other priorities at the moment!"

A Home of One's Own

Independence and integration are among the most important values and goals shared by people with disabilities, their families, and advocates. A home of one's own--either rented or owned--is the cornerstone of independence for people with disabilities. When a person with a disability has a decent, safe, and affordable home, then he or she has the opportunity to become part of the community. With stable housing, people with disabilities are able to achieve other important life goals, including education, job training, and employment.³²

This theme was clearly echoed by participants in our focus group, who repeatedly stressed the importance of living in a place of their own and described the physical environment that allows them to do so, as well as the challenges they face. Satisfaction with housing arrangements, focus group participants said, was the determining factor for remaining in or moving from communities, and this satisfaction depended on two key factors: housing affordability and accessibility. Most of the focus group participants live in subsidized housing, which some had to modify themselves to be able to live there. Across the nation, however, people with disabilities "face a crisis in the availability of decent, safe, affordable, and accessible housing," ³³ because there simply aren't enough units to meet demand, particularly for people with low incomes who require subsidies to help pay for housing.

Over the past seven years, the number of renter households with severe housing problems³⁴ declined for every group eligible for federal housing assistance except for low-income people with disabilities. The Consortium for Citizens with Disabilities Housing Task Force and the Technical Assistance Collaborative estimate that as many as 1.8 million people with disabilities who receive SSI benefits may have severe housing problems.³⁵ They are not receiving federal housing assistance and cannot get on subsidized housing waiting lists. "Instead they are living in congregate settings or in seriously substandard housing; still living at home with aging parents who do not know what will happen to their adult child when they can not longer provide for them; or are either homeless or at risk of becoming homeless." ³⁶

Many low-income people with disabilities who have unmet housing needs are aged 65 and older. According to a recent report produced by the Commission on Affordable Housing and Health Facility Needs for Seniors in the 21st Century, there are nearly six times as many seniors with unmet housing needs as currently are served by rent-assisted housing, and waiting lists for many types of subsidized housing are long. Citing Housing Our Elders,a report produced by the Department of Housing and Urban Development (HUD) in 1999 based on the 1995 American Housing Survey, the Commission reports that "approximately nine elderly applicants were on waiting lists for each Section 202 unit that became vacant within a year." In addition, they report that hundreds of thousands of Section 8 assisted units in senior housing are in danger of disappearing because they are considering "opting out" of the HUD program.³⁷

The vast majority of senior homeowners have paid off their mortgages; however, because of rising property taxes and maintenance costs, there are many who are at risk of losing their homes. Other seniors are not able to continue living in their homes without making significant structural changes to accommodate one or more functional limitations, and some of these modifications may be quite costly to make. According to Housing Our Elders,when the American Housing Survey was conducted in 1995, "over 1 million elderly households…reported needing home modifications."³⁸ Even if disability rates continue to decline, the number of older people with a disability will grow from 6.2 million in 2000 to 7.9 million in 2020,³⁹ largely because the population of older people will climb dramatically in the next decade. The need for housing modifications undoubtedly will grow commensurately with this population increase.

The lack of affordable, accessible housing is due to a number of factors, including the following:

There are a range of federal regulations that protect people with disabilities in the following ways:

Some new pilot federal programs, such as Project Access,⁴⁰ are trying out other mechanisms to expand access to housing for people with disabilities.

Critics say, however, that inadequate funds and lack of a coherent and comprehensive federal housing policy are major obstacles to increasing the stock of affordable and accessible housing in the United States.⁴¹

To make matters worse, the nation's existing "affordable housing programs are not organized or delivered systematically, but rather through myriad complicated programs and housing agencies that have no relationship to one another. Navigating through this maze has proved very difficult for the disability community."

While there are some provisions in federal law and regulation designed to foster collaboration between government housing officials and the disability community-- including the Consolidated Plan--housing advocates for people with disabilities have not learned how to capitalize on them.⁴²

Given the magnitude of the affordable/accessible housing "crisis," effective solutions are going to require creative, out-of-the-box thinking and the involvement of multiple stakeholders, including state and local governments, private developers, consumer advocates, and consumers. A number of states, counties, and cities are making headway in expanding affordable and accessible housing for people with disabilities. While approaches for addressing these housing issues vary depending on local contexts, two common elements exist in most successful efforts:⁴³

Efforts to increase the availability of affordable and accessible housing generally fall into three categories:

Following are several examples of states, counties, and cities that have implemented significant, replicable strategies to expand affordable and accessible housing for residents with disabilities. Partnerships figure prominently in some of them, including partnerships between the disability and aging communities. These two groups often find that they are, in fact, on the same side, representing the same constituency--people with disabilities that have housing needs.

Programs that provide incentives to maintain existing affordable and accessible housing units and/or increase affordable/accessible housing stock in the community.

Austin, Texas. Austin's S.M.A.R.T. TM Housing Initiative provides financial incentives for private construction of affordable, accessible housing located close to public transportation.⁴⁴ The City Council adopted the S.M.A.R.T. Housing Initiative in April 2000, with the goal of motivating production of S.M.A.R.T. Housing.⁴⁵ S.M.A.R.T. refers to Safe, Mixed-Income, Accessible, Reasonably Priced, and Transit-Oriented Housing. The initiative was an immediate success. In the first year, the City Council expected to have 600 new single-family or multifamily housing units under development review. By September 2001, more than 6,000 single-family or multifamily units were under the review or inspection process. By September 2004, 4,000 new single-family or multifamily units had been completed. In 2004 alone, approximately 1,600 to 1,700 units were completed, with 78 percent of them reasonably priced, nearly doubling the 40 percent target.⁴⁶

• Safe: The development complies with the land development code and the adopted building codes.
• Mixed-Income: The development includes at least 10 percent reasonably priced housing units. All of the units meet S.M.A.R.T. Housing standards.
• Accessible: Developments meet federal, state, and Austin's visitability standards for accessibility.⁴⁷
• Reasonably Priced: A percentage of the units must be rented or sold to families whose incomes do not exceed 80 percent of Austin's median family income, and who do not spend more than 30 percent of the family's income on housing. Reasonably priced rental units must be affordable for at least five years; homeownership units must be affordable for at least one year.
• Transit-Oriented: Requirements are set for proximity and frequency of public transportation; porch size and location; street orientation of the house; design of parking areas, driveways, and walkways; and pedestrian and vehicular connections.

Further recommendations are provided for transit amenities (e.g., bus shelters), sidewalks, landscaping, lighting, fencing, common spaces, parking, building facades, and mixed-use spaces (e.g., commercial uses).

The goals of S.M.A.R.T. Housing are to stimulate the development of affordable housing by providing incentives to private developers and encourage collaboration between the public and private sectors. To achieve these objectives, the S.M.A.R.T. Housing Policy Initiative accomplished the following:

• Designated the Austin Housing Finance Corporation (AHFC) as the lead agency responsible for fostering partnerships with the homebuilding industry to develop, finance, construct, renovate, and operate affordable housing in the City of Austin, thus creating clear accountability for results.
• Designated the Neighborhood Housing and Community Development Department (NHCD) as the lead agency on housing policy issues. It is a single point of contact for residents, builders, and city staff. NHCD is a city department that fosters partnerships with neighborhoods and ensures that S.M.A.R.T. Housing Developments "are sited in a manner consistent with applicable federal and city policies."
• Gives the AHFC first dibs on surplus city property at below market prices, thus encouraging construction of more reasonably priced homes.
• Allows full or partial fee waivers for developments that make a portion of their units reasonably priced. These include Water and Wastewater Capital Recovery fees, Development Review and Inspection fees, and Public Works Construction fees.

  Encourages homeowners and contractors to maintain and remodel existing housing to meet safety and sanitation standards with housing rehabilitation guidelines.

• Provides rehabilitation code education.
• Addresses code violations and illegal practices.
• Encourages collaboration and coordination among city departments.

For more information, see the S.M.A.R.T. HousingTM Policy Resource Guide, prepared by the Neighborhood Housing and Community Development, at http://www.ci.austin.tx.us/ahfc/downloads/smartguide.pdf.

Little Rock, Arkansas. The Arc of Arkansas provides affordable, accessible housing to people with and without disabilities in renovated historic buildings. The Arc of Arkansas is "a statewide organization providing support, housing, advocacy, education and leadership to people with developmental disabilities and their families." ⁴⁸ Their goal is to integrate people with disabilities into the community. The Arc used Historic Preservation Tax Credits together with federal, state, and local funds⁴⁹ to finance the renovation of abandoned buildings on the National Register of Historic Places. To date, The Arc has renovated three properties in Little Rock with a total of 106 rental units in proximity to public transportation. Trinity Court Place serves low-income renters while Eastside Lofts and Westside Lofts serve renters with mixed-income levels. All of the apartments contain universal design features and are marketed to the general population. Overall, about 40 percent of renters are people with disabilities. A brief description of the properties follows.

• Trinity Court Place Apartments⁵⁰--The building was built in 1911 and first housed a health maintenance organization (HMO), then a nursing home. Trinity Court Hospital donated the building to The Arc, which in turn partnered with First Security Vanadis Capital, LLC to conduct the $2.1 million renovation. Renovation of the building, which would become Trinity Court Place Apartments, began in November 1998. In September 1999, the first tenants moved into the 22-unit independent living facility for low- to moderate-income people with developmental disabilities and their families. The complex includes accessible one- and two-bedroom apartments and includes unique features such as "lower peepholes, lower wall cabinets, wider hallways and walkways, detachable undersink cabinets, toilet seat and bathtub grab bars, and a high-tech, keyless entry system." ⁵¹ The complex also includes common spaces, such as a community room with full kitchen amenities, art gallery area, classroom, veranda, and courtyard.

• Eastside Lofts⁵²--Little Rock High School (known as East Side High School) was built in 1904. The Arc of Arkansas partnered with Bell/Corley Investments to purchase the school, and contracted with First Security Vanadis Capital, LLC to conduct the $3.6 million renovation of the school into 41 affordable loft apartments for people with and without disabilities. The apartments, which are fully compliant with Americans with Disabilities Act (ADA) requirements, opened in January 2002. In January 2004, rents for the one-, two-, and three-bedroom units were listed at $220–$925 for people who met the income requirements.⁵³ After Bell/Corley recouped on their investment, the ownership of the property went to The Arc.
• Westside Lofts⁵⁴--Westside Junior High School, built in 1917, was renovated in 2003 and transformed into 43 apartments with universal design features. The development team of Dover Dixon Horne, Fennel Purifoy Hammock, and Champion Builders and Herron Horton Architects put together this $5 million project, with consulting services provided by the First Security Vanadis Capital, LLC.

A fourth project is under way.⁵⁵ The Arc purchased St. Anthony's Hospital in Morrilton from the Historic Register. The building is at the base of the Ouachita mountains and overlooks the river valley. Renovation is planned for May 2004 for 30 mixed-income, accessible apartments for a community of people age 55 and older. The purchase price was built into the project cost, and The Arc will get the money for acquisition back when construction begins. After 15 years, when the requirements of the Low-Income Housing Tax Credits end, The Arc will refinance the remaining bank debt and become the sole owner. Income received from the properties will be used to manage the properties and to help The Arc maintain financial stability.

Additional efforts are under way to promote universal design in Arkansas. With $100,000 in seed money from the legislature, The Arc has an agreement with the University of Arkansas School of Architecture to create a universal design center that will train architects, engineers, developers, and investors. The Arkansas Development Finance Authority provides incentives to developers and contractors to use universal design, and First Security Vanadis Capital, LLC continues to encourage clients to use universal design.

For more information, see The Arc of Arkansas Web site at http://www.arcark.org.

Programs that help people with disabilities and seniors remain in the homes where they currently live or rent or buy affordable and accessible housing.

Alexandria, Virginia. Alexandria and other Virginia communities use the Virginia Real Estate Tax Relief Program for Elderly and Disabled Persons to help reduce housing costs for thousands of Virginia residents.⁵⁶ The Virginia Real Estate Tax Relief Program for Elderly and Disabled Persons has been in effect since the early 1990s.⁵⁷ It is a state law that is administered by local jurisdictions. The real estate tax relief program was implemented to prevent people living on fixed incomes from moving out of their homes because of rising property taxes.

To qualify for real estate tax relief or deferral, residents must meet certain eligibility requirements. Applicants must be 65 years or older, or permanently and totally disabled. They must fully or partially own the property and occupy it as their sole residence. Applicants in a hospital, nursing facility, or other institution still qualify as long as they don't rent out their property. Residents also must meet specific income requirements. In 2004, the state income limit was $62,000 and the state asset limit was $240,000.

In Alexandria, residents qualified for a full or partial tax exemption in 2004, depending on their combined gross household incomes⁵⁸ in 2003. People qualified for a full tax exemption if their income did not exceed $40,000, a partial tax exemption of 50 percent of taxes owed if their incomes did not exceed $50,000, or a partial tax exemption of 25 percent if their incomes did not exceed $62,000. Applicants approved for a partial exemption may defer the remaining balance of taxes owed. Interest accrues on the unpaid taxes at 5 percent per year from the date of the deferral until the taxes are fully paid, usually when the property is sold or when the owner is deceased.

Applicants must reapply every three years by completing a multipage application with detailed income information. During the intervening two years, applicants complete a simpler form that asks about any changes since the previous application.

Full data is not yet available for 2004. In Alexandria, as of May 2004, 850 people applied for tax exemptions. Table 1 shows that, with each passing year, more people are taking advantage of the program. In each year, more than 90 percent of applicants received either a full or partial tax exemption, or a tax deferral. In 2003, exemptions totaling $1,658,836 were granted to 709 applicants, resulting in an average exemption of approximately $2,340; total taxes deferred were $7,080 and the average amount was about $1,770.⁵⁹

Source: Personal correspondence, Gary Rossi, Revenue Collections Specialist, Revenue Division, Department of Finance, City of Alexandria, May 11, 2004.

In each year, 80 to 90 percent of applicants were elderly people. The percentage of younger people with disabilities was slightly higher than the percentage of elderly people with disabilities (See Table 2).

Source: Personal correspondence, Gary Rossi, Revenue Collections Specialist, Revenue Division, Department of Finance, City of Alexandria, May 11, 2004.

For more information about Alexandria's program, see City of Alexandria, Virginia, at http://ci.alexandria.va.us/finance/rea_tax_relief.html.

For more information about the statewide Virginia program, see Knapp, J.L., & Kulp, S.C. (2002). 2002 Tax Rates: Virginia's Cities, Counties, and Selected Towns(Section 3). 21st Annual Edition. Weldon Cooper Center for Public Service, University of Virginia, at http://www.virginia.edu/coopercenter/vastat/taxrates2002/02section03.pdf.

Austin, Houston, El Paso, Tarrant County, and Dallas, Texas. The Texas Home of Your Own Coalition (Texas HOYO) was established to help people with disabilities become homeowners and maintain their housing. Recently recognized by Fannie Mae, Texas HOYO is an excellent example of a successful home ownership coalition. The coalition unites multiple partners to help people with disabilities through every step of the home-ownership process, from counseling people with disabilities as they prepare for homeownership to helping people during the post-purchase period as they adjust to homeownership and the responsibilities that accompany it.

Texas was one of the 23 states taking part in the National HOYO Alliance.⁶⁰ In 1995, under the leadership of United Cerebral Palsy of Texas (UCP), a number of stakeholders united their vast knowledge of the housing industry, experience, and resources to "make the system work" for people with disabilities. The partners are committed to the program's success and support participants in several ways:

• Housing counseling organizations provide prepurchase homebuyer counseling and education, budget preparation, early delinquency intervention, credit repair counseling, and post-purchase follow-up and support.
• Realtors help locate homes and property inspectors.
• Lenders⁶¹ play a key role with mortgage products, down payment and closing cost assistance, and financial assistance for property rehabilitation and maintenance.
• Disability organizations⁶² are involved in home assessments for accessibility, grant writing, and marketing services.

The coalition engaged state and local housing organizations to become active members and created a partnership between the coalition and the Texas Department of Housing and Community Affairs (DHCA). To date, Texas HOYO has helped more than 200 people with disabilities purchase their own homes in the urban and rural sections of Austin, Houston, El Paso, Tarrant County, and Dallas.⁶³ The majority of participants have mobility impairments (58%) and incomes at or below 50 percent of the area median income (69%).

To promote the program, HOYO uses a variety of marketing tools such as newsletters, news media, and presentations. To apply for assistance, potential participants call HOYO at an 800 number for an initial screening, attend an orientation program to learn about the homebuying process, and complete an application to determine program eligibility.

Once participants are accepted into the program, they attend a required first-time homebuyer training session and, with assistance from HOYO partners, learn how to locate a home and apply for a mortgage. Because many prospective homeowners with disabilities do not have enough money for a down payment, HOYO can cover the shortfall with a five-year forgivable loan using HOME, Community Development Block Grant funds, and affordable housing grants awarded by the Federal Home Loan Bank.

After the closing, new homeowners may receive financial assistance to make accessibility related changes. HOYO provides financial counseling, information about other programs that provide housing assistance, and a limited amount of financial assistance. Homeowners can contact Texas HOYO with questions about their home or requests for assistance at any time.

Texas HOYO has succeeded in leveraging more than $9 million in resources from the Texas Council for Developmental Disabilities, the Texas Department of Housing and Community Affairs, private foundations, Fannie Mae, and other lending partners. By considering itself a "homeownership program" rather than a "disability program," HOYO has been able to extend its services beyond people with disabilities to other low-income populations in the area.

In an example provided by UCP, a couple, both in wheelchairs, bought a home in 1997 with the help of Texas HOYO. Both had personal experience living in institutions--one had been a resident of a state school for 30 years, the other had lived in a nursing home for a dozen years--so the thought that they could live independently, let alone be homeowners, never seemed within their realm of possibility.

But with $44,000 in down payment assistance from Texas HOYO, a mortgage from HomeChoice, funds for barrier removal from the HOME program, and a Medicaid Home- and Community-Based Services (HCBS) Waiver, they were able to purchase a brand new, single-family home for $76,000, on the $1,120 monthly disability benefits they receive.

While the HOYO program is a labor-, time-, and resource-intensive process that requires a great deal of commitment by the coalition members, it has proved worthwhile: To date, none of the homeowners has defaulted on a mortgage.

For more information about the Texas HOYO, see Langendorf, J., Hubert, N., Eiken, S., & Schaefer, M. (2003). Texas Home of Your Own Coalition. Prepared for U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services (CMS), Disabled and Elderly Health Programs Division, available at http://www.cms.hhs.gov/promisingpractices/txhoya.pdf.

Programs that provide incentives to incorporate accessibility features into existing or new housing stock.

Georgia's EasyLiving HomeCM Program is a certification program that encourages builders to construct and market accessible single-family homes and townhouses. The EasyLiving HomeCM program is administered by a coalition that includes the building industry, state and local government, and accessibility advocates. Certification by EasyLiving HomeCM enables builders to advertise their homes as being easy to live in and visit for people of all ages, sizes, and physical abilities.⁶⁵ Homes constructed with accessibility features enable residents to remain in their own homes as they age and/or develop mobility limitations.

The first home was certified in April 2002, and 50 homes have been certified since that date.⁶⁶ Approximately 600 homes are now in various stages of development and construction. Certified homes range in size from 1,200 square feet to 4,500 square feet, and average 3,000 square feet. Prices range from $90,000 to $600,000. Twenty-five registered builders are located in Valdosta (South Georgia), Savannah, Athens, Big Canoe (North Georgia Mountains), and throughout metropolitan Atlanta. Plans are under way to expand the program to other states, with a Replication Summit planned for September 2004.

Builders qualify for EasyLiving HomeCM certification by including accessibility features in the homes they build to benefit homebuyers in various ways.⁶⁷ For example, accessible homes have step-free entrances, wide doorways, and a bedroom, kitchen, living room, and wheelchair-friendly bathroom on the main floor, enabling social visits by friends and family with mobility limitations. Easy access for all people is stressed. For example, step-free entrances ease entry not only for people with mobility impairments but also mothers with baby strollers. Wide doorways provide access for family members with disabilities and also facilitate movement for anyone carrying bulky items or moving furniture.

The EasyLiving HomeCM certification procedure includes the following steps:

• The program director and coalition partners give formal presentations to builder organizations and one-on-one presentations to builders.
• Builders who decide to register with the program pay a fee ranging from $100 to $1,000, depending on the number of homes they plan to certify.
• The program director offers to review the plans and suggests modifications before construction begins.
• After construction is under way, the program director conducts a home visit to check