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Living Independently in Los Angeles: A Community-Building Electronic Information Project of the Westside Center for Independent Living (WCIL) and the UCLA Advanced Policy Institute (API)

Alan Toy, MA
Advanced Policy Institute, UCLA
3250 Public Policy Building
Los Angeles, CA 90095-1656
(310) 825-5435

Executive Summary

LILA (Living Independently in Los Angeles) is a consumer-directed and regionally focused online project to benefit people with disabilities living in Los Angeles County. LILA is a Geographic Information System-based, interactive information resource site, created in large part by local residents with disabilities using their personal "expert knowledge" to identify and map local independent living resources. Through collaborative efforts with local government and private non-profit community service agencies, the LILA information system also incorporates public and agency databases relevant to the disability community. These may include the Americans with Disabilities Act accessibility features of public buildings, registries of personal assistance service workers, accessible routes of travel to bus stops, inclusive recreation programs, locations of independent living resource providers, etc. 
LILA is designed to empower disabled residents of Los Angeles in their efforts to successfully and independently integrate into the social, physical and political fabric of their communities. The LILA project establishes a countywide consortium of disability, academic and business community leaders to support the expansion of the project after its pilot year. This alliance will generate advocacy efforts to reduce the digital divide in the disability community by promoting public policies that support lifeline access to Information Technology hardware and Internet services, as well as the development of software and online information that specifically contribute to independent, self-directed living.

Lead Agencies: LILA is a collaborative project of the Westside Center for Independent Living (WCIL), one of California's leading Independent Living Centers, with over two decades of grassroots advocacy expertise and the Advanced Policy Institute (API), in the UCLA School of Public Policy and Social Research. API is a recognized national leader in the use of new technologies to support community development in low-income, disenfranchised communities. API provides the expert support to assist the LILA project in fulfilling its technical and policy implementation goals.
Community Partners: Partners in developing and funding the LILA project include the other Los Angeles County Independent Living Centers, City of Los Angeles Department on Disability, County of Los Angeles, UCLA, Pacific Telesis Community Technology Foundation, GTE Foundation, Microsoft Corporation and local disability and business community groups.

Background

Defining the need for the LILA project
1) Opportunities that exist on the World Wide Web still lie out of reach of most people with disabilities because the equipment and online services necessary to access the information super highway are too costly. Disabled Americans consistently rank at the bottom of national employment and economic statistical measurements. The 1998 National Organization on Disability/Harris Survey of Americans with Disabilities found that over 72% of Americans with disabilities do not have jobs. Nearly a third live in poverty. Americans with disabilities who do work earn less than ¾ of the income earned by non-disabled workers. In the currently robust climate of innovation and growth in information technology, Americans with disabilities are still being left behind. Public policies to ensure lifeline access to hardware and Internet services, as well as electronic access to social programs and those services necessary for successful independent living have not yet been developed.
2) Perhaps the most difficult aspect of living with a disability, particularly a significant one, is the isolation caused by a loss of independence and lack of access to the most basic necessities and opportunities of life. Historically, people with disabilities have been cut off from their communities by multiple layers of barriers, both tangible and intangible, physical and attitudinal. Overcoming those obstacles and reclaiming an equal place in society have been the biggest challenges facing the disability community in the last thirty years. Thus far, the vast amounts of information available on the Internet have also failed to meet many of the explicit and immediate independent living needs of people living with significant disabilities. This is because: 

• Government and public online databases have little or no organized data relevant to disability community needs.
• Disability-related information is broadly constructed and is not geographically specific.
• Data is not integrated, so that related city, county or state information regarding disability issues cannot be accessed in one place. 
• Web sites with disability-specific information are seldom interactive.
•  Day-to-day health maintenance and independent living needs are not addressed.
•  Most sites aimed at the disability community are "dot coms" with marketplace, for-profit approaches, treating users as consumers.
•  Information technology access policy issues and advocacy efforts are not addressed.

Description and documentation of disparities facing the Los Angeles County disability community

Over 2 million residents of Los Angeles County have some kind of disability (using national percentages of 20.6% - County of LA statistical data and U.S. Census Bureau, October 1999). Over 900,000 of them have "significant" disabilities, by federal definitions, which means one or more of their daily life activities is impacted by their disabilities. Various governmental programs help many of them with their daily independent living needs. Housing, transportation, personal care assistance and financial subsidies all play a critical role in the survival of people with disabilities. Learning about and enrolling in programs like these is usually complicated and difficult. The red tape and bureaucratic processes are confusing and discouraging to those who seek to understand how relief programs can apply to their personal situations. Easily locating survival information and resources is usually not an option for individuals who are not fully networked into the disability community. Meanwhile, demand for support programs continues to grow at a rapid pace. Using information technology as a tool to help remedy these needs is still not a widely used or developed option. Consider the following: 

• When living with a disability, in addition to the basic necessities, there are daily obstacles that can become insurmountable, because of difficulties in easily locating or accessing them. They may include locating equipment, parts and other products specific to their disability needs, finding recreation or therapeutic programs and services, or just locating businesses or restaurants that are accessible and which welcome customers with disabilities. LILA is the first site that offers a centralized repository of useful information necessary for independent survival with a significant disability in Los Angeles.
  
• Social isolation engenders a number of intra-psychic impairments, including depressive disorders, anxiety disorders, feelings of loss of control and learned helplessness, as well as diminished interpersonal functioning. Pyscho-social conditions compounding physical disabilities and exacerbated by lack of access to survival information can often result in homelessness or institutionalization. LILA is the only on-line platform for an LA-based online disability community network that encourages broader social participation.
  
• The housing crisis for people with disabilities in Southern California is worsening daily as demand pressures increase and landlords raise rents and option out of federally subsidized programs. Finding affordable and accessible housing is one of the greatest obstacles to independent living for people with significant disabilities. A recent report by the Consortium for Citizens with Disabilities Housing Task Force found that the average cost for an efficiency apartment in Los Angeles was 100% of the current SSI income. LA City's Department on Disability estimates that only 3% of the housing stock in the entire city is accessible. There is currently no way for people to register or apply for these programs online or even to locate housing that meets their accessibility needs.
  
• More people than ever are using paratransit services to assist them with their mobility. Access Services, Incorporated (ASI), the LA County paratransit service, reported over 38,000 enrolled riders in 1999, a growth of 5,000 users from 1998. As yet, there is not an online registration process to assist applicants in obtaining paratransit service. 
  
• As of August 1999, 93,499 residents of the county were enrolled in the In-Home Supportive Services program to receive homecare services, up from 78,000 in 1995 (L A County DPSS). Users of these services are blind or severely disabled. Many in the eligible population are at particularly high-risk period for life-threatening complications. Yet, they cannot apply for, or undergo the required periodic IHSS eligibility reviews, online. Nor can they yet access reliable registries of personal care givers and attendants online.
  
• The Social Security Administration figures show 343,335 people in Los Angeles County were receiving Supplemental Security Income (SSI) as of December 1998. 63% of them were blind/disabled recipients. There is currently no process to apply to or even to means test for SSI or SSDI eligibility electronically.
  
• After the Northridge Earthquake, agencies and individuals throughout the state contributed to a California Department of Rehabilitation report intended to improve the emergency response to meet the needs of Californians with disabilities (California Department of Rehabilitation). To date, however, there is still no way to electronically link emergency relief agencies directly with those who are at the most risk during disastrous circumstances.
  By attempting to address these and other needs, LILA is a project that will attempt to give people with disabilities and the public and private agencies that serve them a new way of giving and receiving information to make healthy, stable independent living an easier and more viable life choice. 

Program Description

At the center of the LILA information system is an Internet site - designed and built by the members of the disability community with staff support. The LILA web site contains or will contain:

• On-line user registration forms for communication, outreach, feedback and user evaluation.
• An interactive Independent Living asset map, created by disability community members.
• Interconnected government and quasi-government data sets pertaining to physical and programmatic access for persons with disabilities. These are searchable by text query and, where appropriate, by interactive GIS tools.
• A coordinated on-line discussion forum 
• Advocacy alerts and user response capabilities.
•  On-line program application forms and material in PDF and HTML formats.
•  A community applications page that details examples of how individuals and organizations are utilizing LILA to meet their independent living and access needs.
•  An optional registration page for users to share more information useful to emergency services agencies. Participating agencies would have access to a GIS-based map of persons in the most need of immediate emergency services in the event of a major disaster such as the Northridge earthquake
•  Annotated links to useful web sites.
•  User feedback capability.
•  Font and screen size adjustments.

The policy considerations and community empowerment components of LILA will be directed by a new Los Angeles Disability and Technology Alliance (LA DATA.) of disability community leaders and policy makers to network for fuller social inclusion for people with disabilities through the use of interactive telecommunications technologies. As the LILA information system grows, it can become a platform for creating many different kinds of information exchanges useful to the health and well being of people with disabilities, as well as increasing the efficiency of agencies and government departments that provide services to the community. 

The LILA project is a highly replicable model for county-level community networking and positive change in other places besides metropolitan Los Angeles. Its projected outcomes include: reduced isolation of people with disabilities in LA County, leading to a greater mutually beneficial engagement of people with disabilities with their communities on terms that are more stable, healthy, navigable and manageable. In addition, it is expected that the LILA project will help increase digital literacy and confidence in information technology of the disability community. 
Increasing opportunities for community and personal empowerment through innovative technologies 
Developers of information systems have learned the importance of working closely with user groups in designing and implementing plans. While the LILA initiative brings the primary user groups into the development process through use of focus groups, beta testing and ongoing advisory board review, it also takes the next step and makes the primary site users (people with disabilities) the principal builders of the site. Thus they have a role in improving their own community's wellbeing. Through the use of password-protected administrator pages, the regionally representative (within LA County) Community Access Technologists (CATs) are directly building a Geographic Information System (GIS) database of community knowledge and also identifying and posting, with annotation, valuable internet sites that address the needs of those with disabilities. This approach eliminates the need to transfer information to "web masters" and demonstrates that disabled individuals are uniquely capable of sharing their knowledge in the digital realm.

As noted, information systems that serve this community are either information sites, which provide generalized information about the rights of disabled persons, or for-profit portals seeking to capture the "disability market". This information project for the LA disability community is innovative in its targeted geographic focus and in its emphasis on online peer support and community building. LILA seeks to address the frustrations of the disabled community by helping them to provide the answers to their own questions, rather than being pressured into buying products or services that may inevitably disappoint.

Overcoming barriers to access

The primary growth of the Internet has been in the areas of commerce and education, but non-profit service delivery organizations, like WCIL, are now turning to new technologies to enhance communications, responsive service delivery and overall accountability. This project represents an important new initiative for Centers for Independent Living, providing an opportunity to explore how new technologies can enhance service to the disability community, particularly in an era of reduced funding for social services. 
By bringing together disparate personal, public and agency-based repositories of disability-related knowledge and posting them in a publicly accessible venue, the LILA project creates a virtual, electronic community of regional information, resources and peer support. This sustaining assistance opens doors to social participation and involvement, thus leveling community barriers that heretofore have impeded the full assimilation of people with disabilities into their communities. The supporting alliance, LA DATA will distill and direct advocacy efforts to create new policies of information technology access for people with disabilities. Information, particularly about health-related issues, will be easier to obtain and to act upon, thus empowering people in their quest to achieve stable community-based lifestyles.

An approach to community health and well-being that employs network technologies

The LILA project offers regional solutions to the growing disparities in information technology for disabled residents of Los Angeles County. LILA identifies, distills and maps online the grassroots disability-specific community knowledge that is as diverse, as geographically disparate and as isolated as the LA disability community is itself. For instance, where does one find a local auto shop that installs hand controls? Where is the nearest wheelchair repair shop? Which parks have recreation programs tailored to the needs of persons with specific physical limitations? How can one find reliable personal attendants? Where are the affordable and accessible apartments for rent? What area businesses welcome disabled customers? Where are the accessible bus stops and are there curb ramps allowing accessible paths of travel in a wheelchair? What are the access features of City or County facilities like courthouses or libraries?

The principles behind the LILA project, if successfully tested and developed in as large and diverse a County as Los Angeles is, can be replicated with relative ease using similar templates, in other communities throughout the state and country.

Creating Dynamic 21st Century Disability Community Policies and Services 

Transcending current service delivery approaches and behaviors

The Independent Living Movement began in the 1970's, when a group of people with disabilities asserted the right to control their own lives. The first CIL was in Berkeley, California. It organized a network of people with disabilities to assert their civil rights and offer peer support in seeking alternatives to institutionalization. Independent Living Centers are now found in every major city in the US, advocating for people with disabilities and providing the support services and training programs needed to achieve productive, independent and self-sufficient lives.

LILA is a natural progression of Independent Living concepts into the era of electronic telecommunications. It is a 21st century expansion of the basic Independent Living Movement philosophy of consumer-controlled, community-based, cross-disability efforts for individuals with significant disabilities that promote independence, productivity, and quality of life. The physical barriers that have been addressed by the Americans with Disabilities Act still exist, largely unchallenged, on the World Wide Web. Accessibility is not just physical access, but includes, as a right, electronic access promoting education, employment and health, as well as social and political participation. LILA creates a regional model for leveling electronic barriers to information and bringing independent living resources into the high-tech information age. The LILA project expresses the history and core values of the Independent Living Movement through its primary program components:

• Linking technology needs appraisal with community outreach, empowerment and training.
• Developing the LILA information system through oversight and direct input by Community Access Technologists (CATs) who are members of the disability community themselves.
• Modifying the LILA information system through an organized approach to user feedback.
• Establishing the Los Angeles Disability and Technology Alliance (LA DATA) of disability community leaders to spearhead the efforts to strengthen information technology-based self-help and to develop effective policy and community change advocacy strategies. 
• Creating working partnerships with business, government and academic entities to effect lasting community change. 

Diffusion potential

LILA is a model for employing Internet technologies to address the problems faced by people with disabilities, a situation common in every city and town throughout our nation. As disabled people claim their rights for full participation in society, they will be looking to establish their own tools that address their particular challenges, especially those related to mobility. The new electronic telecommunications tools have already provided ways for some to see things that can't be seen, hear things that can't be heard, and travel to places they cannot go. Used in the right way, they can also help ease the passage from isolation to full inclusion by maximizing the potential for people with disabilities to go to places previously unimagined, do things undreamed of and to both enrich and find fulfillment in their neighborhoods, communities, schools and workplaces.

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