Issues in Rural Independence Revisited

INTRODUCTION

Significant changes have taken place for individuals with disabilities since the passage of the Americans with Disabilities Act in 1990. Along with changes in architecture, transportation, in-home supports such as personal assistance services, technology and education that increase opportunities for integration and community participation have come a heightened awareness among the general public about the capabilities of individuals with disabilities.  While people with disabilities still must overcome almost insurmountable barriers, we are progressing towards first class status, and centers for independent living (CILs) are leading the way.

 As issues become more complex, we have also worked harder to promote integration of people with all types of disabilities, not just those that are deemed acceptable by our society.  Our continuous examination of policies and programs has led to an expansion and a strengthening of our movement.  The practice of segregating people with developmental disabilities into separate educational and employment settings is no longer acceptable to many.  People with significant physical, psychiatric and cognitive disabilities must be released from institutions and psychiatric hospitals and be supported in their communities.  While financial resources play a significant role in making the supports available to make full integration possible, public attitudes of inclusion and acceptance are a precursor to such financial resources.

 Centers for independent living (CILs) especially those in rural areas, have used innovative techniques to enhance accessibility, expand resources and change attitudes in their community.  Because community and center resources are often scarce, rural CILs use a unique blend of collaboration and advocacy to create community change.  Since many rural CILs lack the financing to attend conferences or network with other centers, many feel the need to find economical ways to network with other centers to share problem solving techniques.
 
 About nine years ago, Independent Living Research Utilization (ILRU) Program, at The Institute for Rehabilitation and Research sponsored Issues in Rural Independence, a monograph series highlighting exceptional, successful programs operated by rural CILs.  The monograph series was based upon a survey of rural CILs in which they were asked to identify the five most critical service needs that rural IL Centers face.  Centers identified the following:

• Meeting transportation service needs

• Increasing funding

• Enhancing housing options

• Changing attitudes about disability

• Improving community accessibility

Rural centers were encouraged to submit program information about their efforts in addressing these issues.  A project advisory committee evaluated this information and solicited recommendations from the field on exemplary rural programs in the above areas.  The monograph series was developed to disseminate this information.

Nine years later, the Association of Programs in Rural Independent Living (APRIL) requested that ILRU update the monograph series.  ILRU contacted the centers with programs highlighted in the monograph to find out what had happened in the last nine years.  We were pleased to learn that most of the programs had been expanded or enhanced in some way.  Many exemplary programs that had been initiated as pilot or temporary projects have become part of the regular, ongoing center operations.  In some cases, centers' advocacy efforts were successful in putting mechanisms in place to address the problem; e.g., access or transportation.  Other centers had successfully handed off the programs to another agency that is more appropriate for providing the services; e.g., the community parks and recreation department.  Only in a few cases were we unable to obtain information about a particular program.

 The following pages provide basic descriptions of these programs and document what has occurred during the last nine years.  Chapter One describes four programs that are altering the meaning of disability by changing public attitudes.  Chapter Two updates five programs that increase housing options for people with disabilities in rural communities.  Chapter Three describes how two programs continue to promote physical access in their communities.  Chapter Four shows how three programs increase transportation and Chapter Five provides concluding comments.  We did not update the Funding monograph, since ILRU has already published a variety of resources on this topic.

CHAPTER ONE
CHANGING ATTITUDES

Background

Disabled persons suffer from the highest rate of welfare dependence and poverty in the nation.  These conditions are the outcomes of an even more basic phenomenon.  They result from widespread discrimination, prejudice, rejection, segregation and stigma by society.

 This quotation, which appeared at the beginning of the Attitudes monograph, is as accurate today as it was in 1986.  As with the African American and women's civil rights movements, a fundamental change in the structure of society, as well as the attitudes inherent in its institutions, is necessary for people with disabilities to attain first class status.  Although the Americans with Disabilities Act provides the legal framework to make these changes, the promise of the ADA will not become reality without a substantial change in how society at large views people with disabilities.  Changing societal attitudes is therefore at the core of the IL philosophy.

 As we strive to change public attitudes, we have continued to examine the language we use to talk about disability.  Continuous scrutiny of language has resulted in significant changes in our own attitudes as well as in our language.  The term "handicapped" has become unacceptable both within and outside our community in the last fifteen years.  We no longer use the term "chronic mental illness" to describe someone with a psychiatric disability.  The term "mentally retarded" is not widely used, at least within the disability community or disability services.  We no longer use "personal care attendant" because of the dependency and medical connotations of this terminology.  Rather, "personal assistance services" or "personal assistant" more accurately describes the role of this person.  

 In addition to changing the attitudes of the general public, CILs have worked hard to change our own self-perceptions and attitudes.  Peer counseling is the primary means of changing our self-perceptions; we use individual and systems advocacy as a powerful tool to enhance self-confidence.  There is nothing more powerful and gratifying than prevailing over a government agency, or participating in a group that makes the community more accessible!

 The disability community has also taken a hard look at its practices to insure that people of different ethnic cultures and backgrounds are included in our leadership, advocacy, and services.  Inclusion of these groups has been challenging at times.  Many of us have had to examine our own attitudes, as well as the programs we operate.  We have taken many years to realize that disability occurs at higher rates among ethnic and cultural minorities. We know that our staff and leadership should represent the diversity of the disability population.  While we have not yet reached this goal, inclusion and empowerment of all segments of our community has finally taken center stage.

 CILs continue to be on the front lines in changing public attitudes as well as how we ourselves view disability.  Since their inception, rural CILs have been changing attitudes in their communities-attitudes of the public and of their consumers.  They have used the tools of public education, advocacy and community participation to raise awareness of disability issues in their communities.  Rural centers face particular challenges in changing the attitudes of their communities.  They must develop a heightened sensitivity to the social milieu in which they operate, confront transportation and resource barriers, and overcome the isolation and seclusion that is often the reality for people with disabilities in rural settings.

 The programs described in the Attitudes monograph (1994) were innovative and exemplary programs to change attitudes in their communities.  They were based on the independent living philosophy, and it was precisely this philosophy that made these programs successful.  Each was based upon the individual needs and characteristics of its rural community, and each program used people from the community to manage the program.  

 The programs we update in this chapter include:

  Changing Attitudes of People with Chronic Mental Illness 
  AD Lib Inc., Independent Living Center 
  Pittsfield, Massachusetts

  Outreach to Rural Minorities
  Illinois-Iowa Center for Independent Living
  Rock Island, Illinois

  Changing Attitudes of Children Through Recreation
  Southwestern Center for Independent Living
  Marshall, Minnesota

  Outreach to Rural Native Alaskans
  Access Alaska
  Anchorage, Alaska

 We are heartened to know that most of these exemplary programs still exist, a full eight years after they were initially examined. They have used their success as a springboard to "push the envelope," taking on new challenges and expanding their outreach.  Several of these innovative programs have been adopted by agencies serving the general community.   The integration of disability programs into general community services is, after all, the ultimate measure of success.  

References

Galvin, D. (1986).  "If. . . the Future of Vocational Rehabilitation."  Dunbar, West Virginia: Twelfth Institute on Rehabilitation Issues, West Virginia Rehabilitation Research and Training Center. 

Changing Attitudes of People with Chronic Mental Illness 
AD Lib Inc., Independent Living Center 
Pittsfield, Massachusetts1

 During the 1970's and 1980's, the state of Massachusetts, like many states, embarked upon a major project to move people with psychiatric disabilities out of state hospitals and into the community.  Unfortunately, community services, if they were established at all, were not adequate to meet the needs of their formerly institutionalized residents.  

 As a result of a personal involvement with people with mental illness, Bill Cavanaugh, executive director of AD Lib, perceived a need for a safe place for people from the state hospitals to find companionship, feel welcome and gain acceptance.  AD Lib Inc., Independent Living Center established an innovative program to meet the social needs of this clientele and has successfully integrated these ex-mental patients into advocacy, skills training and other center activities.  Based upon the IL cross-disability philosophy, AD Lib opened the center to people with other disabilities, enabling people with different disabilities to learn from and feel more comfortable with each other.

 A full ten years after its inception, the drop-in center (DIC) is still going strong.  The DIC began operation with AD Lib staff and volunteers, with office hours two to three nights per week.  Today, the center operates with its own staff and is open during non-traditional service delivery times: from 5pm to 10pm on weekdays and from noon to 8pm on weekends. The DIC provides the opportunity for both structured and non-structured activity for approximately 500 members. In 1997, the DIC moved into larger, more modern space to accommodate the significant growth in membership.

 When asked how the DIC had changed in the last ten years, Joe Castellani, the current executive director, mentioned the addition of structured programs that take place in collaboration with other agencies.  Scheduled, structured activities occur simultaneously with non-structured activities; this gives members the choice of how to spend their time.  For example, the agency collaborates with the Berkshire Visiting Nurses Association to provide a monthly prevention clinic.  Nurses visit the DIC one time per month and perform blood pressure checks, temperature checks, monitor height and weights and administer flu and pneumonia shots.  On average, 25-30 consumers see the nurses per session.

 Another collaborative effort is with the Community Access to the Arts Program.  This program provides members with instruction in fabric painting, weaving on a wooden frame and wood art. Projects are then displayed at a local museum and at the agency open house.

 Many members choose to work on their independent living goals through the DIC.  While the coordinator may refer members to other Ad Lib daytime staff, she also works with members on housing, benefits, educational, parenting and vocational goals. 

 The most innovative aspect of the DIC is that it is directed and staffed entirely by consumers.  In the early days of the program, the DIC relied on Ad Lib daytime employees to staff the center.  Today, the DIC employs one full-time coordinator, one half-time leader staff, and 10-15 regular consumer staff.  All DIC staff are people with disabilities and members of the Drop-In Center.  The program no longer needs staff and volunteers from the CIL or other agencies.

 Statistics for this past year indicate that the Drop-In Center has developed into a true cross-disability program.  Out of a total membership of 528 consumers, 303 did not identify mental illness as their primary disability.  In fact, disabilities represented in the DIC membership include brain injury, spinal cord injury, loss of hearing, deafness, blindness, arthritis, cerebral palsy, polio, muscular dystrophy, multiple sclerosis, amputation, orthopedic impairment, psychiatric disabilities, mental retardation, learning disabilities, degenerative disease, diabetes, epilepsy, stroke, spina bifida, speech impairment, chemical dependency and environmental sensitivity.

 To insure consumer control, AD Lib established a consumer advisory board for the DIC, made up of members, DIC staff, and a CIL board of directors liaison.  The board makes recommendations and provides input into the program and its policies.  Membership on the committee is open to any active DIC member.  The advisory board ensures consumer input and a mechanism for this information to be transmitted to the Ad Lib, Inc. board of directors.  Advisory board meetings are held on a quarterly basis.

 Funding for the Drop-In Center has also expanded.  Funding currently comes from the Massachusetts Department of Mental Health, the Massachusetts Rehabilitation Commission State Independent Living Unit, and the City of Pittsfield. 

 In short, the DIC continues to operate on the principles of consumer control, empowerment, development and responsibility for all of its members.  The DIC is a dynamic program, responsive to its memberships' needs and wants.
 

1 A significant portion of this information was obtained from Readings in Independent Living, ILRU, May 2000, available at http://www.ilru.org/ilnet/files/reading/dropin.html

Outreach to Rural Minorities
Illinois-Iowa Center for Independent Living 
Rock Island, Illinois

 The percentage of people of color with disabilities is higher than the percentage of Caucasians with disabilities.  CILs have been increasing their efforts to serve people of color in their communities, but exemplary programs are still quite rare. Centers that successfully integrate people of color into center programs provide lessons for all CILs. 

 One such program is the Minority Outreach Program, operated by the Illinois-Iowa Center for Independent Living (IICIL).  The IICIL was organized in 1988 and provides services to a six-county area, three counties in Illinois and three counties in Iowa.  The center's main office is in Rock Island, IL.  The center is funded primarily through Title VII of the Rehabilitation Act and Illinois state revenues.

 The first step toward increasing services and advocacy to minorities with disabilities in the center's service area was to develop specific goals and a project plan.  In 1991, the center mailed information about the center to minority churches, businesses and fraternal organizations and followed up with personal contacts.  Liz Sherwin, the minority outreach coordinator, began to attend events sponsored by the multicultural community to distribute literature and offer disability related technical assistance. 

 In F.Y. 1990-91, IICIL served a total of 214 consumers, 37 (or about 17 percent) were people of color.  This represented an increase of 67 percent over the previous fiscal year.  The center also increased its representation on its 15-member board of directors from zero to three people of color. 

 Liz Sherwin, who is now the center's executive director, says that the outreach program is still operational and has expanded during the last several years.  The center staff has reorganized into work teams, one for community education and advocacy and one for consumer services.  Both teams are responsible for minority outreach.  The consumer service team provides one-on-one services and the community education and advocacy team conducts presentations, attends community events and participates in advocacy organizations.  

 All staff members do minority outreach as part of their job duties, rather than just one "minority outreach specialist." For example, staff participated in a multicultural awareness day sponsored by one of the communities in the center's service area.  About 600 people of many different cultural backgrounds attended.  Staff also participate in annual events to celebrate Black History Month sponsored by colleges and other organizations.  The National Council of Latinos with Disabilities held a workshop on IDEA for parents of students with disabilities, which the center helped to organize.  The center and its services was highlighted in a local Spanish newspaper.  

 An important thrust of the center's activities is to work with local community action agencies and others actively involved in minority communities.  For example, one community action agency promotes affordable housing-an issue that is crucial for people with disabilities.  Center staff insures that advocacy for accessible housing is on the agenda.  Additionally, involvement with this organization provides entrée to low-income, minority consumers who need benefits counseling, skills training and other center services.  The center also works closely with the Martin Luther King Center, which is located in a minority community.  Involvement with these organizations has led to the center's inclusion in multicultural awareness training for city governments and human service agencies.  In other words, multicultural outreach has become incorporated into all center activities.

 Sherwin sees an advantage to this approach. "When it was just one person doing it, people just left it up to that one person to do it.  It was easy to just dump it on that one person and send them everywhere and expect them to do everything. Now, everyone is responsible.  The team approach allows us to do services better, because we have more people with the knowledge and contacts."

 The center has also come to realize that the staff needs to reflect the ethnic backgrounds of the population.  This is quite a challenge in rural areas, where funds to hire staff are limited.  About one fourth of the center's staff are members of a minority group.  The center has also expanded its staff by hiring contractors.  For example, a Spanish speaking person with disability experience assists by accompanying center staff on consumer visits and translating written materials into Spanish.  The center has also expanded its resources by starting an interpreter referral service.  The revenues from this program can be used to hire consultants and put information into different languages.

 Very few Native Americans live within the center's service area, but the Asian population is growing.  The center works with an agency that operates a resettlement program to educate them about the center and provide etiquette training on disability.  Because the center operates a sign language interpreter service, the center was asked to conduct etiquette training on working with language interpreters.

 Recruiting board members of color continues to be a problem.  Sherwin said, "it is still difficult to find minorities with disabilities to serve as directors, because they don't view themselves as people with disabilities.  Even today, we don't generally have more than one minority serving at a time and we need to do better."  Sherwin notes that previous board members, both minority and Caucasian, felt a lack of involvement in center activities and this may have contributed to difficulty in recruiting minority board members.  Ethnic diversity on the board is still a problem, but the overall board involvement in center activities has increased over the last few years. Sherwin is hopeful that an active, involved board will make it easier to recruit more than one minority member at a time.
 
 Sherwin says that the biggest problem with minority outreach is staff shortage.  "We serve six counties with about 12 staff.  We don't have much time to spend in any county.  To serve minority people, you need to make more of an effort and have more of a presence.  We just don't have the resources to do that." However, Sherwin feels that the minority effort will continue to grow--not by leaps and bounds, but climbing steadily upward.  About 15 percent of the center's consumers are members of minority groups as compared with a representation of about eight percent in the population at large, but Sherwin says, "We want to do more."  This attitude is, in large part, responsible for the center's success.

Changing Attitudes of Children Through Recreation
Southwestern Center for Independent Living
Marshall, Minnesota

 People with disabilities in rural areas may face a higher level of isolation than their urban counterparts due to the sparse population and the lack of transportation.  Often, a child or adult with a disability may be the only person with that disability in his or her community.  This sense of isolation can be especially poignant for school children where conformity is the key to popularity and success and difference means inferiority.  One way to reduce the isolation and lack of support experienced by many rural residents with disabilities is the provision of recreational services.  The Southwestern Minnesota Center for Independent Living (SMCIL), which serves nine counties in Southwestern Minnesota, effectively used this approach to reach youngsters with disabilities in the community.

 Many CILs, including the Southwestern Center, have provided services to assist teenagers and young adults making the transition from school to work and independence for the past several years.  Although these projects have been highly successful, isolation, lack of physical activity and low self-esteem may have already become established.  Many children with different disabilities are able to integrate successfully into after school recreational activities with their non-disabled peers.  But others, whether due to the severity of disability, lack of access to the activity, lack of transportation, or discouragement from parents or professionals, do not participate.  Transition project staff wanted to make contact with younger children in order to begin to address these issues, but limited resources made this impossible.

 The Challenger baseball team was a way to reach children with disabilities not old enough for transition services.  The primary impetus behind the program was a board member who had played wheelchair basketball at Southwest State University.  When the program first started, center staff and volunteers, along with parents, directed the baseball team.  Because the program was so successful, the Marshall Minnesota Parks and Recreation Department agreed to take the team over about five years ago.  The program currently operates as part of the regular recreation program offered to the community.  

 When staff of the center first broached the subject of a Challenger baseball team to the Parks and Recreation Department, the response was quite disappointing.  The department did not have the staff, funds or time to offer this program.  They provided the team with some old equipment and use of a baseball field when it was not otherwise in use.  However, this situation has radically changed.  After the program had been in operation for two years, executive director Steve Thovson approached the Parks and Rec Department and explained their obligations under the Americans with Disabilities Act to offer accessible services to the community.  The person who was then in charge of recreation programs had a daughter with a hearing impairment and was more sympathetic to disability issues.  

 The center worked with the Parks and Rec Department to remove some of the obstacles to establishing a team.  Because of these cooperative efforts and significant parent advocacy, the Challenger baseball team has become a joint project of the Marshall Parks and Recreation Department and the Center.  The center and the local Parks and Recreation Department approached the United Way together to solicit donations to support the team.  Parks and Rec publicizes and runs the program, arranges transportation and recruits players.  Center volunteers sometimes coach or support the team. 

 United Way has been extremely supportive of this project because of the visibility it provides to the center and the United Way.  It became a pet project and the United Way has used this program to increase its own fund raising efforts.  The United Way pays for transportation for out-of-town tournaments, uniforms and Parks and Recreation fees for players from low-income families.  Parents assist the players and sometimes coach the team.

 The Marshall team was the first team in Minnesota.  A Challenger baseball team has started in Mankato based upon the success of the Marshall program.  A third team is planned for another town.  This provides the players with the learning and fun of out-of-town travel and some competition.

 In the future, Thovson says he would like to start a wheelchair basketball team so that former Challenger players will have an accessible recreational outlet.  It is in the preliminary stages of planning and must compete with other service and advocacy issues.  This was a significant reason why Thovson was eager to spin the baseball team off to the Parks and Rec Department.  Thovson hopes that once a wheelchair basketball team is initiated, Parks and Rec will become interested in operating it.

 A major goal of the Challenger project was to reach children at an earlier age and educate them about the center and people with disabilities before they enrolled in the transition program.  Challenger seems to have assisted with this goal.  Approximately 160 children from ten different schools participate in the center's transition program.  While it is difficult to gauge how much the Challenger program contributed to this growth, Thovson believes it has made the schools more aware of the center's services and more open to using the center as a resource.

Outreach to Rural Native Alaskans
Access Alaska
Anchorage, Alaska

 Although CILs understand the importance of adapting their services and advocacy to serve American Indians with disabilities, few models have emerged that enable centers with large Native American populations within their service area to provide successful outreach and services.  For the last ten years, Access Alaska has operated an extremely successful program with the Alaskan Natives.  Although every native tribe has unique characteristics, this project provides methods and insights that can be used to reach Native Americans in other regions throughout the country.

 The Access Alaska Center for Independent Living provides services and advocacy throughout most of Alaska.  Its service area includes the cities of Anchorage and Fairbanks and covers approximately 300,000 square miles, or about three-fifths of the entire state.  

 Hiring Ronald Sam, a Native American with a disability who could develop relationships with the village councils, was the key element of success for this project. Before services could be provided to anyone in a particular village, Sam had to educate the chief, the president and the village council about what services were available and how the center could assist village members.  The local council had to come to a consensus about what services were needed in the village and whether the center would be welcome to provide them.  Only then could Sam and other center staff meet with the village residents with disabilities.

 Unfortunately, Ronald Sam is no longer working with the center due to health problems.  The center has not been able to find a Native Alaskan with a disability to replace him.  Dave Jacobson, the current executive director, says that this has left a major deficit in the center's programs.  

 To overcome this problem, Access Alaska is working with area human service agencies and providers that serve the villages.  Each village has a human services agency that provides services to its residents.  Often, center staff can identify a villager who is a social worker, occupational therapist or other professional.  This person refers villagers to the center and assists center staff to gain entree into the village.  Sometimes the center will assist the human service agency to provide the services--install a ramp or arrange personal assistance services--rather than providing the service itself.  Often, the villagers know the center only by the particular human service professional that renders the service. Typical services include home modifications, ramps, eye-glasses or a needle threader for someone who can no longer do bead work due to vision loss.  Personal Assistance Services (PAS) funding is also available to enable someone to stay in his or her own home. 

 The outreach program has grown because of this approach, but the center is not well known to the Native Alaskan villagers.  Jacobson is also concerned that the center services may not be as consumer driven or as culturally sensitive as they were when Mr. Sam was involved.  Another concern is that this approach often increases staff travel time.  For example, if the human service provider does not speak fluent English, the center staff person might have a difficult time instructing the person over the telephone on ramp installation.  The staff person must make the arduous trip to the village to install the ramp, rather than instructing the villager by telephone in his native language, as Mr. Sam would have done.

 The center has initiated several other projects to reach out to Alaskan Natives in remote areas.  One project is a consumer-directed PAS program, which provides more flexibility than the traditional Medicaid waiver; e.g., family members are allowed to provide PAS.  The center also uses Title VII, Chapter Two older blind funds to reach out to this population, providing magnifiers, glasses and other aids.  

 The center also receives funding from the National Science Foundation (NSF) to match scientists with students who have disabilities from rural areas.  This project, called the Science Mathematics Engineering and Technology (SMET) project, is conducted in cooperation with the Universities of Alaska and Hawaii. Two scientists with disabilities from these universities initiated this project. The center calls its project "Dream Catchers"; its purpose is to increase the participation of minority students with disabilities from rural areas in mathematics, science and technology.  It brings together business leaders, educators and students to promote education and employment in these fields.  The project's message is that there is a future in science for people with disabilities.  When a student or parent contacts the center, they are interviewed by staff and matched with professionals and business people with the same skills and interests.  If the match is successful, the student might participate in an internship or employment. The center also funds scholarships to science camps for children from families with limited resources.  For more information on the SMET project, go to www.smet.org.

 Jacobson has two significant aspirations for the Outreach to Native Alaskans Project.  First, he hopes to identify a Native Alaskan with a disability to provide outreach services to this population.  Second, he hopes to identify more financial resources to continue to provide these much needed services to Alaskan Natives with disabilities.

CHAPTER TWO
HOUSING

Background

 Although some changes have taken place in housing for rural Americans with disabilities in the last several years, the basic facts remain the same.  Finding accessible, affordable, integrated housing is still a major barrier to self-sufficiency and independence for people with disabilities in rural areas. 

"The passage of Public Law 105-276 revamped the way we fund public housing in the U.S.  This law allows Tenant Based Assistance (TBA) to have nation-wide portability and to be used for home ownership.  We have begun to chip away at some of our oppressive national housing policies that segregate and exclude people with disabilities," says Becca Vaughn, housing activist and spokesperson for Disability Rights Action Coalition for Housing (DRACH).  A major breakthrough occurred when the U.S. Department of Housing and Urban Development (HUD) announced that 25 percent of Section 811 funds would be used for TBA.  In the past, the 811 primarily funded segregated housing units, which required the tenant to participate in mandatory services.  Today, finding housing is not dependent upon the availability of or compliance with services, reflecting the spirit of fair housing civil rights laws.  Another change is that certain programs cannot be targeted toward a particular disability group; these programs must now serve people with all types of disabilities.
 
 Another positive change occurred on October 12, 2000, when HUD issued its final regulations on how Section Eight vouchers could be used to buy a house.  This means that, instead of using your voucher to pay for rent, people with disabilities can use these vouchers to buy homes, with all the benefits that entails.  However, local public housing agencies are not required to participate and are not required to include people with disabilities in the home ownership program.   Whether the local housing authority enables people with disabilities to take advantage of these opportunities may be dependent upon the efforts of local advocates.  

 On the negative side, cutbacks in construction of affordable housing projects in the 1980's are causing a significant housing shortage today.  Funding for affordable housing has been maintained at the 1980 level for about the last twenty years.  During the early 1990's, the existing housing stock began to crumble. Any new HUD funding was targeted to rehabilitation and replacement of these units, including HOPE VI, a major revitalization program.  

 Another significant change is that housing that was designated as "elderly and handicapped" (E&H) has been designated as "elderly only."  While most residents with disabilities were not excited about living in E&H housing, the loss of this option has been a further decrease in the level of accessible, affordable housing stock.  Although many of the units that were lost to the disability population were converted to other voucher programs, they are more complex and dependent upon the availability of existing accessible housing-still in short supply in rural areas.  It is estimated that about 40 percent of vouchers designated for people with disabilities were returned to HUD unused because there is not enough existing, accessible housing stock.   Vaughn stated that recent legislation clarified that applicants with disabilities can seek an exception to a voucher's rent cap if they are unable to identify accessible housing within the cap, but few people know about this option.  

 Rural centers are developing innovative ways to meet the housing shortage in their community.  Some centers are developing extensive home modification programs to enable people to remain in their family homes after disability onset.  Others are collaborating with the National Home of Your Own Program, which assists people with significant disabilities to purchase their own private homes.

The programs we update in this chapter include:

The HAMMER Project 
Access Alaska 
Anchorage, Alaska

Modest Home Makeovers
Iowa State University Extension 
Ames, Iowa

Housing with Care
Accessible Space, Inc. (ASI)
St. Paul, Minnesota

Service Enriched Low Income Housing
Atlantis Community, Inc.
Denver, Colorado

Home of Your Own 
University of New Hampshire Institute on Disability
Durham, New Hampshire

 During the last nine years, these programs have continued to grow, adapting to the ever-changing national housing policy and the changing needs of their communities.  While different in their approaches, these programs continue to optimize existing community resources and natural support systems to increase housing options for people with disabilities.

The Hammer (Home Modifications) Project
Access Alaska
Anchorage, Alaska

 ACCESS Alaska's Hammer Project began in 1984, providing accessibility modifications in and around the city of Fairbanks. Using a revolving loan program established with grant "seed" money and donated labor coordinated by the local carpenters' union, the program represents a successful collaboration of local trade and service groups.  At first, the program was funded with volunteer labor, business donations and Community Development Block Grant funds.  Later, a combination of funds enabled project expansion to Native Alaskan tribes living in the surrounding rural areas.  A 1992 state capital grant provided resources necessary to make more extensive interior renovations, and the center used people from the community service component of the correctional system for additional labor.

 "The most significant change in the Hammer Project during the last several years is its integration into other center programs," says Dave Jacobson, executive director of Access Alaska.  In the early days of the project, modifications consisted primarily of accessible entrances and lowered kitchen counters.  As the center became more sophisticated, they realized that consumers' needs were more complex.  In addition to access modifications, consumers needed a comprehensive array of services, including peer counseling, personal assistance services and advocacy.  Center staff tapped into funding sources that provided a more holistic approach.  For example, Medicaid Waiver funds are now being used to provide home modifications along with other services, to enable consumers to stay out of nursing homes and live in the community.  The Hammer Project was renamed "The Home Modifications Program" to reflect this more comprehensive approach and the permanence of the program.

 Staffing for the Home Modifications Program has also changed significantly.  The center now hires contractors for the larger jobs with funds from the Alaska state legislature, rather than relying upon community service workers and volunteers.  Volunteers deliver supplies and equipment that have been donated, including wheelchairs, grab bars and commodes.  The used equipment program has several sources of funds, including Title VII Part C and Chapter Two Older Blind funds, a small United Way donation and a $15,000 matching state grant.  The grant is drawn from state legislative general funds that are made available to city health and human service departments throughout Alaska. The state grant funds 60 percent and the locality provides 40 percent of the funds.  Private health and human service agencies, such as Access Alaska, apply for these competitive grants through their localities.

 This program is a wonderful example of how community resources can be used for project start-up.  Once community support is raised and the center staff has experience managing the project, the center can move on to use more permanent funding that provides more comprehensive services.

Modest Home Makeovers
Iowa State University Extension 
Ames, Iowa

 The Cooperative Extension Service, a trusted member of the rural community, has been a partner in developing innovative solutions to the housing problems affecting the rural population for many years.  Iowa State University Extension responded to the farm crisis of the 1980s by replacing traditional home planning/ remodeling workshops with a low-cost approach to home improvement.  Recognizing that families facing drastic cuts in income were not able to afford major remodeling changes, the Modest Home Makeovers program was created.

 The Modest Home Makeovers program was originally established to help 
low income families to use existing resources in new ways to make their homes more comfortable and convenient without spending money.  A team of state specialists, home economists and volunteers worked with a family to make improvements on a single workday.  They analyzed family activities to see if rooms could be put to different uses.  They rearranged furniture to improve 
traffic patterns and switched furniture from room to room to create more useful groupings.  They brought clutter under control through improved storage plans.  Finally, they found finishing touches amidst attic castoffs or forgotten mementos. 

 During the first few years of operation, Iowa State University (ISU) makeover teams transformed over 200 homes in Iowa.  Thousands of other families saw the "before and after" pictures of these makeovers at workshops and community meetings throughout the state.

 The program includes three key ingredients:  (1) a team approach involving family members, Extension staff and/or other professionals and volunteers; 
(2) a focus on low-cost or no-cost improvements; and (3) advance preparation 
so the makeover can be completed in one intensive "work day" (Yearns, 1995).

 During the 1990s, the focus of the Modest Home Makeovers program
was changed to address the needs of farm families affected by disabilities.  Makeovers are now a part of AgrAbility, a collaborative effort between ISU Extension and Easter Seals Iowa, partially funded by a grant from the U.S. Department of Agriculture.  ISU Extension and Easter Seals staff, assisted by volunteers, visit people in their own homes to make accessibility improvements.  There is no longer a requirement for individuals who have received makeover assistance to assist others with Modest Home Makeovers. 

 Mary Yearns, Ph.D., who has been the primary staff person for the project since the initial monograph was written, says that the project still operates in the same basic fashion.  The goal in working with families is to offer cost-effective ideas for improving home accessibility in their farm home.  

 Essential to replication of the project is someone in a leadership position with housing expertise and creativity. Dr. Yearns is still as integral to the project's success as at the last writing.  As a housing specialist with educational and personal background in housing accessibility and interior design, she continues to provide leadership for the project.  However, she stresses that a teamwork approach is needed, so volunteers assist with the makeover. Use of volunteers provides the major challenge for the project--arranging a day when all volunteers, staff and family members can be present for the makeover.  This is a team effort, and all key decision makers need to be there at the same time.  But, once everyone is there, the process can go smoothly and can be completed in one day.  The long distances involved in visiting rural homes make one long visit more efficient than several short ones.  "It's also more convenient for the family.  It's nice to get everything over and done with in such a short amount of time," says Yearns. 

 Yearns uses before/after slides of accessibility improvements in workshops around the state to educate extension and human service staff and consumers.  Interested persons can go to the website for more information. (www.extension.iastate.edu/housing, then select section on Aging and Disabled)

 Yearns says, "It is a joy to help families and professionals see that many accessibility improvements can be made without remodeling the home, and without spending a lot of money."  This can be accomplished by helping families rethink how space is being used in the home.  The family experiences instant results with this approach.  Rather than coming back over a period of several weeks to make small changes, the accessibility improvements are made in one day.  Most of the changes do not cost money.  The emphasis is on using furnishings and equipment the family already has in new ways. For example, a quadriplegic male and his family were able to remain on the family farm after a modest home makeover.  The makeover team converted the dining room into the master bedroom and converted the family room into the dining room. The family room was converted to a children's playroom and moved upstairs. The program attempts to provide as much accessibility as possible without doing major carpentry or construction.

 Teamwork and volunteers also stretch limited resources.  The team makes quick decisions and better solutions after a discussion of alternatives possible.  Finally, aesthetics are an important part of the makeover process.  Adding the "finishing touches" can do a great deal to lift the family's spirits and give them a sense of empowerment (Yearns, 1995). 

References

Yearns, M. (1995). Modest home makeovers to improve farmhouse accessibility: How our AgrAbility team used this fast, affordable alternative to remodeling with the Miller family. Technology and Disability 4 (1995 49-60).

Housing with Care
Accessible Space, Inc.
St. Paul, Minnesota

 Accessible Space, Inc. (ASI), headquartered in St. Paul, Minnesota, is a not-for-profit residential development corporation whose mission is to provide accessible, affordable, community-based independent and supportive living opportunities for adults with mobility impairments and/or brain injuries. They reach this goal through development, ownership and cost-effective operation of cooperatively managed housing and support services.  ASI has constructed or received funding for 75 sites throughout the country, of which approximately 20 percent are rural or semi-rural.  ASI will assist communities to develop housing from the needs assessment stage through day-to-day operations.

 ASI has experienced tremendous growth since the writing of the monograph.  It has grown from a total of 34 to 75 sites, representing growth of 125 percent in the last ten years!

 The basic service model of combining housing with personal assistance, case management and other community services has not changed.  ASI works with communities to find some middle ground between the existing alternatives of an institutional setting and completely independent apartments.  The service model enables individuals with disabilities to receive the support services they need in apartments they cooperatively manage.  

 To get things started, an organization from the local community requests ASI's assistance in putting together the funding package, works with ASI in raising the start-up costs and garners community support. Generally, the community agency, representing consumers, parents or a service provider, calls ASI and asks for a consultation, for which the local organization pays.  Steve VanderSchaaf, ASI's CEO, travels to the community to present the steps necessary to begin a successful development.  Typically, ASI puts together the proposal to HUD. The local organization pays all related costs, including earnest money for potential purchase of the property and related ASI staff costs.  The HUD proposal is submitted in May; a response is generally expected by November.  

 After the proposal is approved, ASI and the local organization have a year to raise other sources of funds for the project.  Funds are needed to make the building high quality and accessible; e.g., adding a higher quality carpeting and automatic doors.  Community groups raise foundation or local funds; sometimes cities or localities offer support in the form of reduced fees or sale of property for $1.  ASI also approaches foundations for potential grants or other gifts.  Between $300,000 and $700,000 must be raised for each project.  

 A co-sponsor from the community is required for the project.  Frequently, one of the community groups that originally requested information becomes the co-sponsor.  After the building is completed, ASI's role varies, based upon the strength of the community organization. In some cases, ASI can manage the housing and provide services. In some cases, the co-sponsor fills these roles, and in other cases, the roles are divided between the local organization and ASI.

 All residents of ASI houses must meet the very low-income guidelines established by HUD.  Qualifying individuals pay 30 percent of their gross income for rent.  To receive personal assistance services, applicants must demonstrate financial ability to pay privately or be eligible for Medicaid.  State and county Medicaid reimbursements, Section 8 vouchers and resident fees continue to provide the bulk of funding for ASI residences.

 ASI operates five different housing models:

• Services to Persons with Mobility Impairment--The initial program offered in the first five houses still provides accessible, affordable housing with supportive living services for individuals with mobility impairments.  Today the program operates in 15 sites, including shared homes and apartments. 

• The New Beginnings for Brain Injury Program--A community program focusing on services to adults with brain injuries.  It provides services to 75 adults at six sites.

• The Shared Living Program--A residential group home program operating at seven sites.  Four adults with brain injuries live in each home, where they receive supportive assistance.

• The Independent Living Program--A staff-assisted program for adults with brain injuries to enable them to live more independently in the community.  IL skills workers meet with participants several times a week, giving guidance in areas of specific need.  Although not a residential program, staff help locate appropriate housing.

 In addition to the above services, which were in operation at the time the original monograph series was written, three have been added and one has been subtracted.  Through the Nevada Home of Your Own Program, ASI assisted consumers to buy their own homes by assisting with financing and down payments.  ASI assisted 53 consumers to purchase homes, valued at $4.4 million.

 The Nevada Community Enrichment Program (NCEP), opened in 1992, provides day treatment and residential support services to persons with a brain injury.  Through a unique arrangement with Nevada's Rehabilitation Division, 25 percent of the consumers using NCEP's services are indigent.  NCEP also operates Nevada's Assistive Technology Center (ATC); an assistive technology loan program; the personal assistance services (PAS) program; a long-term residential home; and four HUD Section 811 supportive housing apartment buildings in Las Vegas, Reno and Carson City, Nevada, that provide access to 24 hour care on a shared service basis. Three other HUD Section 811 supportive housing developments are currently under development in Nevada.

 In 1999, the Bay Area Rehabilitation Center, Inc. ("Center") became a nonprofit affiliate of ASI.  Located in Baytown, Texas, the Center is a free-standing outpatient rehabilitation facility that, like NCEP, is accredited by CARF.  The Center has collaborated with ASI on two supportive housing developments in Texas and been instrumental in the success of ASI's four other HUD Section 811 apartment buildings in Texas.

 Twin City Services, ASI's transportation component, discontinued operations in 2000.  This service provided transportation to residents of ASI sites in St. Paul Minnesota.  Metro Mobility, the area's paratransit service, now serves these residents. 

 ASI's community-based model is dependent upon a coalition of advocacy groups, service providers, families and concerned citizens willing to piece together federal, state, county, city and private funds.  The local community requests ASI's assistance in putting together the funding package, works with ASI in raising the start-up costs and garners community support.  

 Mike Oxford, the newly elected president of the National Council on Independent Living, said that specialized housing is a very tricky arena.  "The decision-making really and truly needs to be vested with the individual.  When a center is involved with housing operation, or somehow vested in its success, the staff may never present other, more integrated options to the consumer.  Sometimes, moving into a disabled housing unit is the only option for people leaving institutions.  But advocates need to keep their eye on the broader picture for the long-term answer.  We need to advocate for additional poverty housing and Section 504 compliance in the long run.  We have to have the systems advocacy perspective, while respecting individual choice and creating acceptable options in the community."

Service-Enriched Low Income Housing Project
Atlantis Community Inc.
Denver, Colorado

 The Service-Enriched Low Income Housing Project at the Atlantis Community in Denver, Colorado, was organized to finance low cost, integrated housing with personal assistance services.  Atlantis specializes in locating low-interest loans, grants and other mechanisms to finance the purchase and rehabilitation of existing properties, which are, in turn, rented to tenants with and without disabilities.  Atlantis is committed to operating integrated housing--no more than 20 percent of people with disabilities live in any housing site.  Rental income pays the mortgage and subsidizes peer counseling and personal assistance services, which are offered to all tenants.

 At the time the monograph was written, the Robert Wood Johnson Foundation funded the project.  The purpose of the RWJ funding was to hire consultants to teach Atlantis staff to develop financing packages to purchase or rehabilitate integrated low-income housing for people with disabilities.  The project was successful--Atlantis now employs its own cadre of staff with these skills.  

 Because the regulations governing Title VII, Part C of the Rehabilitation Act prohibit CILs from operating residential facilities, Atlantis has split its housing operations from the CIL, which continues to provide peer counseling, personal assistance and other services.

 Atlantis staff has developed several new housing projects in the last several years in and around Denver and even more are on the drawing board.  For example, Atlantis is in the process of purchasing a nursing home that is filing for bankruptcy and plans to convert it to integrated, accessible housing.

 The Atlantis project was included in the monograph on rural programs because the organization was developing a similar housing project in Durango, Colorado, in conjunction with the local CIL.  Atlantis had identified an old school available for purchase and planned to convert the building to apartments.  Compliance with lead based paint and other problems made building conversion unaffordable. Unfortunately, Atlantis has been unable to find an affordable site that would be within the paratransit service area and close to shopping, employment or other services that tenants might need.  The Durango project is on hold indefinitely because of these problems. 

Home of Your Own
University of New Hampshire Institute on Disability
Durham, New Hampshire

 During the early 1990's, the Administration on Developmental Disabilities (ADD) of the U.S. Department of Health and Human Services created the Home of Your Own initiative to promote home ownership by people with disabilities who have been traditionally excluded from this opportunity.  The initiative targeted individuals with limited financial resources who have relied upon subsidized housing and those who, because of intensive support needs, have resided in supported living programs.

 Beginning in 1991, the ADD funded several Home of Your Own demonstration projects of national significance, including the New Hampshire Home of Your Own Project.  This three-year initiative, developed by the University of New Hampshire's Institute on Disability and the state housing authority, was noteworthy because of the state's predominantly rural nature.  

 New Hampshire's Home of Your Own project was designed to address the housing needs of people with developmental disabilities.  The project focused on creating new approaches to person-controlled housing with services tailored to the needs of each participant.  The pilot phase of the project was used as the basis for a national program which operated in 23 states.  The university received federal funding to operate a project in its own state and serve as a national technical assistance center.  Funding for the national program lasted for five years, with the expectation that the states would continue to operate the projects.

 Today, the Community Loan Fund manages the project, in cooperation with the New Hampshire Housing Authority and the Developmental Disabilities Council.  The project has been continued in about 15 of the 23 states.

 When asked if the project has changed in the last several years, staff responded that they have modified some policies and put more safeguards in place based upon experience.  For example, the project now requires that applicants live on their own, in an apartment or in some other living arrangement, for a short time before being eligible to buy homes.  This enables homebuyers to get acclimated to living on their own and managing their own support system.  Staff of the housing authority also make sure that homebuyers establish a maintenance account for repairs or unplanned expenses.  Additionally, staff try to manage problems early before they become crises.  For example, staff make a phone call to the homeowner who forgets to pay the mortgage before sending official notification of a late payment.  Finding funds for a down payment on the home and arranging adequate support services continue to be issues, especially for potential homebuyers without family support.

 There are three ways to obtain support for down payments, emergency repairs or closing costs: secondary guaranteed loans, gifts from civic groups and grants and loans from government agencies, such as Community Development Block Grants, state housing finance agencies, and state and local housing affordability programs.  Of course, funds from all of these sources are in short supply.
 
 Traditional residential services for people with developmental disabilities are typically purchased by a state or county as a "package" of room, board and professional support from a provider agency.  However efficient, this structure often creates an uncomfortable mix of housing and services, and the resident can lose his or her housing if they do not comply with service rules.  Residents remain "guests" in their own homes, subject to the rules and schedules of professional service providers.  

 For these reasons, it has become commonly accepted within the IL movement to separate housing from support services. This project is unique in the value it places upon this separation.

 This project enables people with significant physical and cognitive disabilities to live in their own homes rather than in traditional group homes.  The traditional group home provides housing and professional staff as a package.  The Home of Your Own project enables people to buy and own their own homes.  Personal assistants are provided through Medicaid or some other funding source.  These support people visit the person in their own home; therefore, the consumer is able to more fully direct his or her own care.  

CHAPTER THREE
ACCESSIBILITY

 The passage of the Americans with Disabilities Act (ADA) enabled CILs to change the way they advocate for community access.  More than ten years after passage of the ADA, governmental agencies and businesses are seeking the expertise of centers on access issues and barrier removal.  The mere passage of the ADA, in and of itself, did not lead to this collaborative situation.  Ten years ago, governmental agencies, businesses and employers were wondering how seriously the ADA would be taken and how minimal their compliance efforts could be.

 CILs, especially those in rural areas, had to work hard to develop the expertise and relationships to become a resource for ADA compliance in their communities.  In some cases, centers had to use hard-core advocacy strategies, including civil disobedience and demonstrations, before community agencies would cooperate.  In other cases, centers used the "carrot and stick" approach, offering assistance in obtaining funding along with the threat of ADA complaints to illicit cooperation.  In all cases, centers obtained seats at the table because they had gained a position of strength in their communities.  Local governments and community agencies knew that the centers and their consumers would not hesitate to take action to achieve ADA compliance.

 Physical access and barrier removal have become an ongoing component of center operations and are not viewed as a separate and distinct program.  Centers are contacted as a matter of course when access issues arise. They have a prominent seat at the table when new buildings and renovations are considered.  

 Of the four programs reviewed in the Accessibility monograph, only two are updated.  The Vermont Center for Independent Living (VCIL) is no longer doing community access work because the State of Vermont has hired accessibility experts to work with state agencies on access issues.  The "Barrier Busters" program operated by the Arizona Bridge to Independent Living (ABIL) was not updated because their center does not serve a rural area. 

The programs updated in this chapter include:

ADA Compliance
IMPACT Inc. 
Alton, Illinois

Access to Transportation
Topeka Independent Living Resource Center 
Topeka, Kansas

ADA Compliance
IMPACT Inc. 
Alton, Illinois

 IMPACT Inc. is an independent living center serving Alton and six surrounding counties in Illinois. The center is staffed by 18 professionals and operates on an annual budget of $500,000. IMPACT places a heavy emphasis on compliance of governmental agencies and private businesses covered under Title II and Title III of the ADA. 

 In 1992, based upon the advocacy of IMPACT staff, $2,000,000 in Community Development Block Grant (CDBG) funds was set aside to assist small governmental agencies with removal of architectural barriers to comply with Title II of the ADA.  An accessibility team of ADA experts, including people with physical and sensory disabilities, visited government facilities and provided a written access report.  The document described the accessibility assessment and set forth a proposal to develop assurances, compliance mechanisms and staff training. The report also included information on tax incentives for making accessibility modifications, providing reasonable accommodations and employing people with disabilities.  At the time the monograph was written, this team had assessed 40 local governments for accessibility and was raising about $35,000 annually in fee-for-service revenues. 

 While IMPACT Inc. is still doing access work, the access project has changed significantly since the monograph was written.  There are no longer CDBG funds designated for access since many of the local governments have completed their transition plans and access renovations.  Today, most new construction and renovation occurs with ADA Title III entities, so the center has expanded its efforts to include private, non-governmental buildings.  Rather than conducting site visits, the center has developed cooperative relationships with some of the city planning departments in the service area and reviews most building and renovation plans, both governmental and non-governmental, during the normal approval and certification process.  

 Staff still conduct on-site access surveys of buildings after construction is completed in cities where they do not have cooperative agreements.  If they identify violations, staff work with the entity to correct the problem, or, if the entity is not willing to solve the problem, file a formal complaint.  Dick Goodwin, IMPACT executive director, says that the center has had very limited success in filing Title III access cases with the Department of Justice.  In many cases, DOJ does not open the case.  The Department merely sends a letter advising the complainant of the general legal requirements and encourages them to work towards resolution.  In cases where the Department opens the case, the process is extremely slow.  

 The center generally files complaints with the Attorney General's Office under the Illinois state access law.  This law is much stronger than the ADA; for example, access aisles next to accessible parking spaces are required.  Complainants are prohibited from filing lawsuits under the Illinois statute, but the Attorney General has gone to court on behalf of several consumers.  The center is preparing a complaint against a condominium builder who refuses to make his building accessible.  The center has not decided with whom it will file the complaint.

 The center no longer receives fee-for-service dollars to conduct the access surveys--access reviews and surveys are funded with state IL dollars.  The center's assistant director now conducts the plan reviews and access surveys, with input from other staff as needed.  

 Goodwin expects the project to continue in its current structure.  The center will continue to use a combination of technical assistance and advocacy to create change in the community.  He hopes to negotiate cooperative agreements with all of the localities in the service area.  "Maybe they will get tired of dealing with complaints and will work with us more cooperatively," he quips.

Access to Transportation
Topeka Independent Living Resource Center 
Topeka, Kansas

 Topeka Independent Living Resource Center (TILRC) provided van service for people with disabilities for several years. The center discontinued the service in December 1992 and launched a confrontational offensive to influence the Topeka Metropolitan Transit Authority (TMTA) to comply with the ADA. Consumers and service providers alike met the discontinuation of TILRC's van service with fear and opposition, even though TMTA operated a local paratransit service. Before the offensive was over, many community members with disabilities were fighting for ADA compliance, as well as expansion of the transit system to provide evening and weekend service to Topeka's total population. Moreover, the center and the TMTA developed a cooperative relationship that led to a successful application for Easter Seal funding to improve transit access.

 The Easter Seals project funds lasted for only 18 months, but this project served as a catalyst to develop a positive working relationship that has lasted for years.  "The greatest outcome of the grant was that the TMTA began to recognize the center as an expert on disability issues, including the ADA and disability sensitivity.  You don't need as much external funding if you have a positive relationship with people who have the funding," explained Mike Oxford, TILRC's director.

  "The relationship between the center and the transit authority is still very good.  I'd say it's even improved since the time the monograph was written," continued Oxford.  When the transit authority has a question about a specific issue or a problem, they call the center.  Problems get hashed out between the center and the TMTA.  For example, when the TMTA is making a decision to move a bus stop or change a schedule, they call the center.  Conversely, if the center receives a complaint from a consumer, the complaint is resolved quickly, because the center has relationships and contacts that can address the complaint.

 The relationship between the center and the TMTA has resulted in concrete transit service enhancements.  Every bus in the regular route system is lift-equipped.  When the accessible buses were placed in service, the TMTA and the center realized that the environment around the bus stops was not accessible enough for people to use the service.  To address this problem, the TMTA and the center went to the City of Topeka to advocate for funding and set priorities for modifications to the streets and sidewalks near bus stops.  Because of their joint efforts, the environment is very accessible.  

 The paratransit needs of the community are largely being met and there are very few complaints.  Several years ago, the center worked with the TMTA to test evening and weekend service.  People with and without disabilities now have access to evening and weekend service.   The center's efforts resulted in transit service enhancements as well as integration.

 To meet the increased service demand, TMTA is contracting with private providers, including taxi companies.  The contractors are "standing in the shoes" of the TMTA, which has worked hard to make them accessible and responsive.  TMTA discontinues contracts with providers who do not operate accessible, high quality services.  The taxi companies have purchased accessible vehicles to participate in the paratransit system, so these vehicles are available to any passenger who calls a cab.  Because the entire transit system functions so well, the center no longer feels the pressure to provide transportation itself.    In the future, Oxford hopes the center will advocate with the TMTA to obtain additional transit funds from the state legislature.  

 "Overall, we learned that it is possible to move from a service provider to an advocate," says Oxford.  "Center consumers were extremely angry when we discontinued our transportation service, because they could no longer use agency vehicles to get around. The board was clearly behind this move, but it was very unpopular at first.  There was a significant handful of consumers who wrote complaint letters to the board and staff.  They had become comfortable with center vehicles and drivers and were reluctant to try another service."  

 The center dealt with the opposition by phasing out the transportation service over an 18 month period, helping people apply for the TMTA paratransit services and conducting regular route bus training.  During this period, the center also advocated for ADA Title II compliance of transit services.  The center generated huge turnouts to public hearings during the Title II transition planning period, so consumers had significant effect on how services would be provided.  Staff tried to teach consumers that, as long as the center provides transportation, TMTA is off the hook for providing an adequate public transit system.  

 "Part of center leadership is the willingness and ability to weather the storm, even from some of your own consumers," concludes Oxford. "Now consumers understand that advocating with the TMTA has resulted in better service for everyone.  This project showed that it's worth it to take some knocks to make the system change.  Advocacy works!"

CHAPTER FOUR
TRANSPORTATION

Background

 Transportation is still a significant barrier for people with disabilities living in rural areas.  As in 1992 when the rural monograph series was written, getting to work, obtaining an education, participating in civic affairs or finding recreation on a Saturday night are still difficult, if not impossible, for many people with disabilities.  Lack of transportation creates isolation, unemployment and dependence.  A full ten years after passage of the Americans with Disabilities Act and almost 25 years after the Section 504 Regulations were promulgated, CILs must work hard to insure that transportation is accessible, affordable and available throughout their communities

 The Research and Training Center on Rural Rehabilitation RTC Rural presents the following facts about rural transportation and people with disabilities:

 Lack of transportation is one of the most frequently cited problems facing people with disabilities living in rural areas.  While the 1998 authorization of the Transportation Equity Act for the 21st Century (TEA-21) increased the total amount of funds for public support of transportation and increased the funds available for rural transportation and transportation for the elderly and individuals with disabilities, the discrepancy between urban and rural transportation allocations remains significant. About 25% of the nation's population lives in rural areas but only about 6% of transportation funds are allocated to rural areas. 

 For 41 % of rural residents, there is no public transportation available at all. Another 25 % live in areas where public transportation is extremely inadequate, providing fewer than 25 trips per year for each household without a personal vehicle. Where there is public transportation for people with disabilities, it is usually provided by vans (53%) or small buses (21%) that have restricted operating times and destinations. Half of these vehicles are past their life expectancies and 60% aren't wheelchair-accessible. Per capita, rural people own more private vehicles than urban people, but more than half of poor rural families--one out of thirteen rural households--don't own one. 

 Despite these major obstacles, many rural centers for independent living have advocated aggressively with local officials to assure that transportation needs of their consumers are met. In some cases, the center has advocated for a community-wide transit system that serves all rural residents.   These centers have shifted from being a transportation provider to a transportation advocate.  In other cases, the center has taken on the arduous task of providing accessible transportation itself.  

 This chapter updates three transportation programs that have taken different approaches to solving the transportation problem in their community. We update the following programs:

Collaborative Transportation
Developmental Services of Northwest Kansas (DSNWK)
Hays, Kansas

From Transportation Provider to Transportation Advocate
Disability Action Center-Northwest
Moscow, Idaho

Transportation Provider
HASL Independent Abilities Center
Grants Pass, Oregon

 We were unable to obtain information about the employment rideshare program in Pennsylvania and the church-based transportation program in Raton, New Mexico.  The following pages show that the remaining three centers may have changed their method, but retain their commitment to accessible transportation in their community. 

Collaborative Transportation
Developmental Services of Northwest Kansas (DSNWK) and LINK CIL
Hays, Kansas

 Hays is a small town with a population of about 20,000 in Ellis County in northwest Kansas.  LINK is the CIL located in this area.  Until recently, LINK's service area was void of public transportation, including taxi service.  Some human service agencies had their own vans, but transportation was available only to clients of these particular agencies, trip purposes were limited and services were fragmented, with no coordination between the providers.  Because many LINK consumers, older adults and other citizens did not drive, the lack of transportation--especially accessible transportation--was recognized as a major problem.  

 The Kansas Department of Transportation (KDOT), the agency that provided most of the funds for agency-based transportation, became concerned about the number of projects they were funding in Ellis County, with the plethora of vehicles and minimal and fragmented service.  They looked to Developmental Services of Northwest Kansas (DSNWK), the largest recipient of funds and the provider with the most vehicles, to coordinate the transportation. At the time the transportation system began service, LINK was a division of DSNWK, but has since become a free-standing center.

 LINK worked with DSNWK and other providers to help them understand the need for a comprehensive, unified transportation system that was accessible to all riders, with schedules that were responsive to consumer needs.  LINK also pushed for the establishment of an advisory council composed of service recipients to guide the development of the transportation system.

 Today, DSNWK operates a unified system of accessible transportation throughout 18 counties, covering 1600 miles.  Participating human service providers lease their vehicles to DSNWK, which provides dispatch, drivers, and insurance.  The agencies purchase transportation during certain hours and on certain days of the week for their clientele.  The funds from these agencies are pooled with other contract funding, such as city, county, state and federal funds, to provide services for everyone. Riders pay $1.00 per trip; the actual cost per trip is about $8.00.

 Transportation is available from 7:00 a.m. to 5:30 p.m. on weekdays, with extended service two nights a week until 10:30 p.m. Transportation is not available on Saturday, but is provided on Sunday from 9:00 a.m. until 4:00 p.m.

 Since 1993, a route to Russell, Kansas, about 30 miles to the east, has been added to the system.  An intercity bus service, which is fed by the paratransit service, links 14 of the 18 counties.  The bus operates on three different routes each day, one of which is 200 miles in one direction.  On July 1, a medical transportation service was initiated to serve areas not covered by the intercity bus.

 Ron Straight, DSNWK's transportation manager, is planning for the future.  DSNWK is looking at "intelligent transportation systems," which assist with routing, dispatching and other transit functions.  These systems enable dispatchers to send written messages to the drivers to assist them in locating passengers, to inform them if a passenger is late, cancels their trip, etc.  Global Positioning Systems tell the dispatcher the location of the vehicle with an accuracy of within three feet.  Some systems connect the vehicle to the maintenance department for monitoring of transmission and other maintenance issues.  These systems also provide the possibility of linking providers across the state to enable passengers to travel from one service area to another.  Straight is also exploring the possibility of "smart cards," which enable riders to pay fares by credit card or pay in advance with cash. 

 This innovative transportation system has drastically improved the transit services available in one of the most rural areas of the country.  It presents a model of cooperation that maximizes resources and staffing to improve services to consumers.

From Transportation Provider to Transportation Advocate
Disability Action Center-Northwest
Moscow, Idaho

 The Disability Action Center-Northwest, a CIL on the border of Idaho and Washington, began its transportation service in 1983 when it purchased its first vehicle with funds from Title VII of the Rehabilitation Act.  There was no coordinated system at that time--each agency provided transportation to its own clientele.  The board later expanded the program to serve all residents of Moscow, but there was still no coordination between agencies.

 At the time the monograph was written, Mark Leeper, executive director of the center, found several problems, both philosophical and operational, with being a transportation provider:  

• Providing services does not promote community change.

• The center's focus on providing transportation takes time and attention away from other priorities.

• The relationship between the center and its consumers is dramatically altered because consumers advocate against the center to insure that services are not cut back, instead of with the center to see that services provided by another organization are improved.  

• Some center board members, especially those who use the transportation personally, advocate for more lenient policies or expanded service hours, even when this is not financially viable for the center.  This causes discomfort between the board and center staff.

• Community residents without disabilities are reluctant to use the service because they perceive it as "transportation for the disabled."

 Because of these issues, the center stopped operating the transportation system in 1994.  Leeper explained, "The expertise and time required to continue the system would have taken me out of the CIL business.  The transportation made us a provider and not a CIL."

 COAST, an agency that provided transportation to senior citizens in the state of Washington, was interested in expanding its system and establishing an area brokerage system for the border area between Washington and Idaho.  The center was anxious to curtail its transportation service and COAST was anxious to pick it up.  The first step in making the transition was to contract out the management of the transportation service to this agency, which had employed a transportation expert to expand the system.  After extensive discussions with the center, COAST took over the transportation and made it into a dual-state, eight county demand-response brokerage system.  

 "The service has grown a lot since COAST took it over," says Leeper.  The service is available five days per week to the general public, so there are no eligibility or trip purpose requirements.  Riders simply call an 800 number to schedule a pick up.  COAST provides the service itself, contacts another organization, or matches the rider with a volunteer.  Pick ups can be scheduled every twenty minutes: 12:00, 12:20, 12:40, etc.  The only restriction on destination is availability of vehicles.  The majority of the riders are elderly and disabled. All components of the system are accessible.

 "The system is really a hodgepodge of a lot of smaller services," explains Leeper.  The basic transit service operates as a brokerage model, with different agencies contributing vehicles and drivers.  For example, COAST provides the dispatching and coordination and provides rides to their clientele, as well as customers who are not eligible for their services. A private company that operates a mail run provides transportation when the van is not otherwise in use.  Some towns operate their own paratransit services and COAST schedules with them when they receive a request.  The University of Idaho and Washington State University operate a commuter service between the two campuses.  This is a fixed route service that operates on a specific route with bus stops.  Riders can use the commuter service in conjunction with the paratransit service at either end of the trip.  

 When the contractor purchased an inaccessible bus, the center successfully advocated for accessible service. The university commuter service is now an accessible component of the brokerage system. However, there is no paratransit service operated by the university.  When the need arises for transportation, the student must call the public paratransit system.  "The university's lack of financial support for the paratransit system has been a real disappointment," said Leeper.  

 A variety of sources fund the transit service. The Idaho Transportation Department passes through federal funding for contracts with various agencies to operate the service.  A state vehicle investment program funds vehicle repair and replacement. The administration and dispatching service is partly funded by Washington State, through the Washington State Transportation Department

 "Despite these positive changes, the transportation needs of the community are still not being met because funding is so limited," said Leeper.  "About 25 percent of the population is rural and about 6 percent of the transportation money goes to rural transportation.  Idaho receives about $2 per person per year."

 The center still takes a high profile in transportation issues, but has shifted its involvement from a provider to an advocate.  Leeper serves on the board of directors of the transportation service.  The center also advocates at the state level for rural transportation funds and promotes coordination by supporting funds only for vehicles that are part of a coordinated system.  "We must get our local community to support coordinated transportation before we can successfully advocate with the federal government for support," said Leeper.  

 This center has shown that it is possible to shift from a transportation provider to a transportation advocate and use the center's advocacy skills to address community transportation needs. Because the center has formed a positive and trusting relationship with the transportation provider, it is now free to turn its attention to other pressing issues. 

Transportation Provider
HASL Independent Abilities Center
Grants Pass, Oregon

 HASL Independent Abilities Center began a volunteer-based transportation service in 1990 after the widow of a former program participant donated a lift-equipped van to the center.  The van was operated on a minimal budget which was later augmented with county transportation funds.  One unique aspect of this service was that individuals could "check out" the van if the driver completed a defensive driving course, had a driver's or chauffeur's license and had liability insurance.  The van was modified with hand controls, an electric door opener and a lift to allow someone with a disability to drive the van.  A small number of volunteers also served as drivers.  HASL's van service was the only form of accessible transportation available to the general disability community.  

 "The van service has grown and become much more formalized in the last few years," said Don Drake, HASL's board of directors chair.  Unfortunately, the portion of the service that allowed an individual to rent the van for personal use has been dropped, due to cost and liability issues.  The center has hired a part-time driver to replace the volunteer drivers.  The transportation now serves anyone with a disability throughout the center's six county region.  

 The center is hoping to purchase a second van and hire another driver to help meet the growing demand.  In addition to county transportation funds, the center has a contract with the Oregon Medical Assistance Program to provide medical transportation and a contract with Senior and Disabled Services, the state Title XIX program, to provide non-medical services. 

 Another major change is that a centralized call center is planned that will be installed throughout the district, funded by special transportation dollars from the state of Oregon. When a particular agency cannot meet its transportation requests, or when an agency has a vehicle available, they telephone the call center and the demand is matched with the available van.  "Partnering with other community services or transportation providers through the call in centers expands the transportation available for everyone," said Drake.

 HASL's service hours are 8 a.m. to 5 p.m. Monday through Friday.  If HASL purchases another van and hires a driver, they will be able to expand the hours to 7 p.m. and possibly operate on Sunday mornings.  About 586 unduplicated rides were provided during the past quarter of operation, according to Drake.

 When asked why HASL provides transportation rather than encouraging another community agency to do so, Drake responded, "Employment, transportation and housing are the additional needed services of CILs.  Transportation enhances the core IL services.  Consumers are able to build independence and meet their IL goals.  HASL does not want to be a transportation service--only to enhance the lives of people with disabilities and offer them the opportunity to become as independent as possible.  Consumers can now go to school, employment, and other activities.  People become more independent as a result of the transportation we provide."  

CHAPTER FIVE
CONCLUSIONS

 This document updates ILRU's 1994 Issues in Rural Independence Monograph Series, providing readers with up-to-date information about the exemplary programs highlighted in the original series.  The purpose of this monograph is to disseminate basic strategies these exemplary programs use to continue to insure access and IL services in their communities.  We reviewed 14 of the original 19 programs.

 We draw several conclusions from our review.  First, the vast majority of these programs were still operational in some form.  Although some of the programs had significantly changed to keep up with changes in funding, staffing and the needs of their communities, most are larger, more sophisticated and more well-established then when they were originally reviewed. Only in a very few instances were we unable to obtain recent program information.  

 Several of the programs are now operated by other community agencies.  In many cases, the centers established these programs in the hope that, once successfully operational, they could be spun off or handed over to another agency.  For example, the Challenger baseball team run by the Southwest CIL is now more appropriately operated by the Marshall Department of Parks and Recreation.  The transportation formerly provided by the Disability Action Center-Northwest in Moscow, Idaho, is now being operated by another entity.  This is not a loss for the center, because the center increased accessible services in the community.  Handing off the programs enabled these centers to focus upon other, more pressing issues.

 Another indication of growth and sophistication is that special projects have become permanent and have been integrated into overall center services.  Several staff members take responsibility for implementation. The programs are not as dependent upon one individual to make things happen.  The minority outreach program of the Illinois-Iowa Center for Independent Living and the Hammer Project of Access Alaska are good examples.

 Several of these projects have drawn additional funding sources to the center.  For example, the Outreach to Native Alaskans project of Access Alaska is now funded by Medicaid Waiver funds and the transportation service of HASL has received several new contracts.  These funds have been a catalyst for expansion.

 Housing is not provided directly by rural CILs.  This is due in part to regulations under Title VII that prohibit centers from operating housing and to the evolving IL philosophy that promotes integration.  Centers have worked with other community agencies in unique and interesting ways to keep people in their own homes and to increase accessible, integrated housing stock. 

 Another interesting change is that relationships have become more collaborative and less adversarial over the past few years.  TILRC's advocacy for transportation in Topeka and IMPACT's access program in Alton, Illinois, are good examples.  This speaks to the success of centers' advocacy efforts.  Collaboration is based upon a position of mutual strength and respect as agencies and centers work to improve programs and access.

 We hope you have found the programs described in this monograph interesting and enlightening.  One of the strengths of the IL movement is that it fosters innovative solutions to community-based problems.  While each center must tailor its programs to meet the unique needs of its community, we hope this update will serve as a catalyst in fostering even more innovative approaches to problems in rural areas.  Feel free to contact these centers to obtain more information using the resources listed on the next page

RESOURCES

David Jacobson
Executive Director
Access Alaska
3550 Airport Way, Suite Three
Fairbanks, AK  99709-4772
907.479.7940
TTY:  907.474.8619
FAX:  907.474.4052
Email:  access@alaska.net
http://www.alaska.net/~access/
 

Elizabeth Sherwin
Illinois-Iowa ILC 
P.O. Box 6156
Rock Island, IL  61204-6156  
309.793.0090   
TTY:  309.793.0090
FAX:  309.283.0097
Email:  IICIL@iicil.com
http://www.iicil.com/

Joe Castellani
AD Lib
215 North Street
Pittsfield, MA  01201   
413.442.7047   
TTY:  413.442.7047
FAX:  413.443.4338
Email:  AD Lib@vgernet.net
URL: none

Steven Thovson
Southwestern CIL
109 South Fifth, Suite 700
Marshall, MN  56258   
507.532.2221   
TTY:  507.532.2221
FAX:  507.532.2222
Email:  swcil@means.net
http://www.macil.org/swcil/

Mike Oxford
Executive Director
Becca Vaughn
Housing Activist/DRACH Coordinator
Topeka IL Resource Center
501 SW Jackson, Suite 100
Topeka, KS  66603-3300  
800.443.2207
TTY: 785.233.4572
FAX: 785.233.0779
Email: tilrcje@tilrc.org or DRACHQB@tilrc.org
http://www.tilrc.org

Michael Auberger
Atlantis Community, Inc.
201 South Cherokee Street
Denver, CO  80223-1836  
303.733.9324   
TTY:  303.733.0047
FAX:  303.733.6211
Email:  adaptden@plinet.com
URL: none

Mary H. Yearns, Ph.D.
Extension Housing Specialist & Associate Professor
Department of Human Development & Family Studies
62 LeBaron Hall, Iowa State University
Ames, IA  50011
515.294.8520
TTY: none
FAX:  515.294.1908
Email: yearns@iastate.edu
http://www.extension.iastate.edu/housing

Housing with Care
Accessible Space, Inc.
Jennifer Samaha or Steve VanderSchaaf
2550 University Avenue, Suite 330N
St. Paul, MN  55114
800.466.7722
Email: jsamaha@accessiblespace.org
http://www.accessiblespace.org

Jay Klein, Director
Center for Housing and New Community Economics (CHANCE)
4028 Crescent Drive
Fort Collins, CO 80526
970.377.0706
FAX:  970.377.0536 
Email: jmk1@cisunix.unh.edu
http://www.alliance.unh.edu

Dick Goodwin
IMPACT CIL
2735 East Broadway
Alton, IL  62002   
618.462.1411   
TTY:  618.474.5333
FAX:  618.474.5309
Email:  impact@ezl.com
http://www.impactcil.org

Mark Leeper
Disability Action Center - NW
124 East Third Street
Moscow, ID  83843   
208.883.0523   
TTY:  208.883.0523
FAX:  208.883.0524
Email:  dac@moscow.com
http://www2.state.id.us/silc/dacn.htm

Ron Straight
Developmental Services of NW Kansas
Transportation Manager
Certified Community Transit Manager
PO Box 1016
Hays KS  67601-1016
785.625.2018
TTY: none
FAX: 785.625.8204
Email:  Ron_straight@notes1.dsnwk.org
http://www.dsnwk.org/R5WebPages.nsf

Don Drake
HASL ILC, Inc
1252 Redwood Avenue
Grants Pass, OR  97527   
541.479.4275   
TTY:  541.479.1475
FAX:  541.479.7261
Email:  thaslinc@cdsnet.net
URL: none

Copyright 2001 by
ILRU Program
2323 S. Shepherd, Suite 1000
Houston, Texas 77019
713.520.0232 (v), 713.520.5136 (TTY), 713.520.5785 (fax)
 

ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized, free-standing medical rehabilitation facility for persons with physical and cognitive disabilities.  TIRR is part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities.  Since 1959, TIRR has provided patient care, education, and research to promote the integration of people with physical and cognitive disabilities into all aspects of community living.

The mission of the IL NET is to provide training and technical assistance on a variety of issues central to independent living today--understanding the Rehab Act, what the statewide independent living council is and how it can operate most effectively, management issues for centers for independent living, systems advocacy, computer networking, and others. Training activities are conducted conference-style, via long-distance communication, webcasts, through widely disseminated print and audio materials, and through the promotion of a strong national network of centers and individuals in the independent living field.

Substantial support for development of this publication was provided by the Rehabilitation Services Administration, U.S. Department of Education. The content is the responsibility of ILRU and no official endorsement of the Department of Education should be inferred.

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