Disability Funding in California

Executive Summary

Introduction

Fourteen years after the passage of the Americans with Disabilities Act (ADA), the magnitude of the challenges faced by disabled Americans is still immense: they are the poorest, least employed and least educated minority in the country. Now numbering over 54 million, they make up almost 20 percent of the national population.

People with disabilities reflect the diversity of America and are the only minority group that anyone is eligible to join, making disability issues vitally important to everyone. Nevertheless, the visibility of the disability community in funding circles remains minimal. Nationwide, only 3.2 percent of grant funds go to disability community groups. This under-investment is mirrored by a lack of representation within philanthropic institutions. In 1995, only 10 percent of all foundations and corporate giving programs in the United States had a staff member who self-identified as having a disability, and only 12 percent had a board member who did so.

Further complicating this situation, there is a paucity of research analyzing trends and practices in disability funding. To fill the information gap, the current study gathers survey information from 108 grantmakers and in-depth interviews of 20 grantseekers in California with a wide range of perspectives and experience with disability issues to document how California grantmakers understand and address disability issues and to explore possible communications and knowledge gaps between grantmakers and applicants.

Findings

The majority of funders reported making disability-related grants, but those grants account for a small percentage of their overall funding. While three-quarters of the respondents said they did make disability grants, almost half reported that those grants totaled 5 percent or less of their overall funding.

The large percentage of respondents who fund disability under their health program areas may indicate that “the medical model” is still common in the philanthropic world. The most frequently cited foundation program area for disability funding was “health,” with almost 65 percent of respondents reporting categorizing their disability grants in this area. Furthermore, 20 percent said that over half of their disability-related grants were funded under medical or health program areas. This may imply that the majority of the respondents’ foundations view people with disabilities as patients to be treated and/or clients requiring “special” services. In contrast, representatives of disability groups point out that the “problem” with disability is frequently located in social, attitudinal and physical barriers to participation in society — not in the individual’s functional limitation.

Respondents had a greater tendency to support organizations serving people with physical disabilities than those focusing on cognitive and/or psychiatric disabilities — and very few reported making grants covering people with all types of disabilities. While all categories of physical disabilities were funded by 70 percent to 80 percent of respondents, mental retardation, psychiatric and learning disabilities were funded by approximately 50 percent to 60 percent of funders. Additionally, fewer than 10 percent of the respondents reported supporting “cross-disability” programs and/or organizations.

While many disability programs have distinctive characteristics, some of which are best addressed in terms that elude general foundation categories, disability funding need not be restricted to its own program area. Respondents reported broad support for programs serving people with many different types of disabilities — including arts and culture, youth development and employment. The responses of funders currently supporting disability programs indicate that a high level of flexibility is possible regarding the allocation of funds within traditional program areas to disability-related issues. However, support for disability-specific services like independent living or provision of personal attendant services for people with severe disabilities — which do not fit neatly into traditional foundation program areas — was mixed.

While a small percentage of funders address disability formally by employing such practices as mentioning it in their grant guidelines or mission statements, more foundations employ informal practices like encouraging disability proposals. A number of respondents reported practices that were or could be employed informally: 60 percent of respondents assign a program officer to review disability proposals and 50 percent encourage disability proposals; slightly less than 40 percent of respondents have a staff member who monitors disability issues. More formal practices, such as including disability in the organization’s mission statement (20 percent) or written program priorities (30 percent) or having people with disabilities on the staff, board or as consultants of the organization (approximately 20 percent each) were half as likely to be present as informal ones.

Mechanisms for screening proposals for inclusion of disability issues were largely not present; those screens that were applied tended to operate informally. Overall, screening for applicants’ understanding of people with disabilities as a minority group was most likely to be practiced with approximately 15 percent of respondents doing so formally and another 35 percent screening for it in a less formal manner. The next most utilized practice was checking to see if applicants’ proposed programs were accessible to people with disabilities. Screening for use of alternate means of communications — like Braille or large print or for Web sites designed to be accessible to people with disabilities — was least likely to occur. A small but significant percentage reported applying the extensive screening but only when reviewing proposals submitted by disability organizations.

Respondents reported medium to high levels of awareness of such disability-related issues as access to health insurance and employment discrimination but were much less aware of other issues, like the backlash against the ADA and other disability rights legislation. Funders also reported low levels of awareness of the connection between aging and disability and issues surrounding society’s preference for institutionalizing people with disabilities.

While grantmakers’ responses indicated a basic acceptance of disability as a relevant issue for California funders, support for favoring proposals submitted by disability-run organizations and for viewing people with disabilities as a minority group was mixed. An overwhelming majority of respondents believe that people with disabilities make up a sizeable proportion of the population and are at least encountered by — if not served by — their grant applicants, but not as many are ready to embrace people with disabilities as a minority group or favor funding organizations run by members of the disability community.

Respondents with greater awareness of disability issues tended to work for organizations that have more formalized methods of screening proposals and employ organizational practices encouraging inclusion of disability concerns. Similarly, respondents with opinions and beliefs reflecting an active interest in funding disability tended to work for organizations that were moderately more likely to employ these practices and screening methods.

Different types of foundations have markedly different levels of disability-related practices. Community foundations and other public foundations have notably higher levels of awareness, greater inclusion of disabled people in their own organizations (on staff, board and as consultants), are more likely to include disability in their mission statements and program priorities, and have more sophisticated and extensive disability screening processes in place. Operating foundations are comparable to public foundations in terms of staffing, inclusion in mission statement and program priorities and other practices, but they rate somewhat lower on awareness and significantly lower on use of disability screening techniques. Family/independent foundations lag behind in all three categories: awareness, practices and screening. Corporate foundations/giving programs did not respond to the survey in large enough numbers to make up a significant subgroup.

The grantseekers interviewed were unanimous in their opinion that funders do not understand disability issues in sufficient depth. The majority of grantseekers interviewed report that their organizations operate on a model that incorporates or recognizes civil rights of people with disabilities, but they think that most funders view disability through the medical model and lack understanding of the civil rights of people with disabilities (“disability rights”). Representatives of consumer-run organizations reported varying levels of frustration when their proposals are declined because of what they perceive to be funders’ unfamiliarity with disability issues or the capacity and/or needs of their organizations.

Nonprofit representatives interviewed pointed to a communications gap between disability groups and grantmakers created by lack of a common language and little face-to-face interaction. Grantseekers interviewed believe that funders can set the stage for positive working relationships with grantees when they hold face-to-face meetings, make site visits, provide feedback and/or resources, encourage personal relationships, exercise flexibility, and are willing to learn from the expertise of nonprofits who work in disability communities.

To some extent, the relationship between the grantmakers and grantseekers in the study is an extension of the general funder/applicant relationship, but other aspects of the relationship appear to be specific to disability. The paucity of people with disabilities on staffs and boards of foundations and the comparatively recent recognition that people with disabilities make up a minority group that has more than medical needs complicates the relationship between grantmakers and disability organizations. While many of the communication gaps discussed by the interview respondents are not specific to disability issues, the degree and level of miscommunication are exacerbated by the complexity of disability issues and the perceived expense of addressing them.

Both funders and grantseekers emphasized the importance of printed and Web-based resources, but they disagreed on the value of face-to-face meetings. The preference for printed or electronic information is most likely a reflection of the need and desire on the part of both groups to do their work in the most time-effective manner. However, while grantmakers rated all types of meeting activities (including workshops, meetings and conferences for funders) lower than other types of resources, applicants emphasized face-to-face meetings as a valuable source of information for grantmakers and an important communications tool for both parties.

Recommendations

Recommendations for Grantmakers

By broadening their definition and understanding of disability, grantmakers can be more responsive to the full range of issues affecting the country’s largest minority group.

• Make sure your organization’s working definition of “diversity” includes people with disabilities and that their widespread presence in society is factored into your thinking about major social issues.
  • Reconsider perceptions of such major national issues as poverty, education, unemployment and access to health care in light of the facts that people with disabilities are the largest, poorest, least educated and least employed minority group in the country and that millions of disabled individuals do not have health coverage.
    • If the needs and issues of people with disabilities are not factored into analyses of these issues and programs that address them, funding decisions may not be as comprehensive or effective as they could be.
  • Take note of the finding in the Joint Affinity Group report on diversity practices in foundations: “Diversity is increasingly viewed as part of foundations’ accountability mechanisms to populations and constituencies they fund … [but] … the foundation field does not perceive disability as a diversity issue.” Since California foundations are already ahead of the curve in disability funding, they could lead the way for the national foundation community by institutionalizing this more inclusive notion of diversity.
    • Publishing and disseminating diversity statements containing language specifically including people with disabilities would send a strong signal to grantmakers and grantseekers alike.
  • Adopt the broad ADA definition of disability, which includes people with mental as well as physical functional limitations and emphasizes the minority-group status of the disability community.
    • Viewed through the lens of the ADA definition, proposals from disability organizations are more readily seen as eligible for funding in traditional foundation program areas.
• Work to institutionalize the inclusion of disability issues into grantmaking programs and priorities through formal or informal means, as appropriate to organizational mission and structure.
  • Encourage and assist staff in all program areas to recognize and incorporate disability issues. Refer them to free resources like the Screening Tool for Disability Inclusive Grantmaking, A Disability Policy Primer for Funders.
    • Funders with a commitment to disability funding can provide disability awareness training for their program officers, along with guidance in utilizing the most effective Web sites and listservs containing disability-specific information.
  • Utilize the expertise of local disability organizations and consultants to learn about concepts like disability rights, reasonable accommodation, and assistive technology that are associated with efforts to promote equality of opportunity and access for people with disabilities.
  • When reviewing disability proposals, especially those from small consumer-run organizations, consider both the potential of “non-traditional” operating procedures and the possibility of additional costs related to disability.
    • On one hand, organizations may be able to do more for less by providing on-the-job training to disabled volunteers on benefits.
    • On the other hand, there may be a need for additional costs for such accommodations as interpreters, accessible transportation and assistive technology.
  • Grantmaking organizations can begin to incorporate disability in an informal fashion by making sure that proposals from disability groups are not routinely rejected when they fit established program areas.
    • Program officers in those organizations can affect institutional activity through such informal practices as encouraging proposals from disability organizations.
  • Foundations with a history of funding disability organizations can formalize their commitment by specifically mentioning disability in guidelines, proposal evaluation criteria and screening mechanisms.
  • Consider providing grants that foster self-reliance, independence and self-determination and that incorporate consumer input.
    • Look at some of the less well-known disability-related issues like personal attendant care and transportation adaptations/alternatives.
    • Capacity-building grants and funding for advocacy projects are particularly important in the disability arena.
• Learn about the variety of accessibility issues relating to people with disabilities and begin to implement means of removing barriers to access.
  • Ensure that the grantmaking process is fully accessible to people with disabilities by addressing the following:
    • Make sure that foundation offices are architecturally accessible, and hold public meetings in accessible spaces and locations;
    • Provide written material in alternate formats such as Braille, large print, computer disks and audiotape;(1)
    • Introduce receptionists and program staff to the use of telecommunication devices for the deaf (TTYs) and telecommunication relay services, and provide sign language interpreters for public meetings and events, as needed;(2)
    • Ensure that Web sites do not have graphical material that is not translated into text and are otherwise accessible to people with visual and other disabilities.(3)
  • Encourage applicants to include people with disabilities and disability issues by incorporating questions in grant review processes. Consider addressing the following questions, either formally or informally:
    • Architectural and program access;
    • Communications access (e.g., alternate formats for written materials, Web sites, interpreters and TTYs);
    • Inclusion of people with disabilities in diversity and non-discrimination statements and requirements.
  • Consider creating an incentive fund to help grantees achieve accessible environments, programs and communications.
    • Offer a small amount of additional funding covering accommodation and access needs for proposals that contain a plan for incorporating people with disabilities.(4)
• Expand active outreach to the disability community when recruiting candidates for Board, staff and consultant positions and provide educational and experiential opportunities for current Board and staff to help them learn about disability issues.
  • Especially if you fund disability programs, consider the benefits of hiring staff with first-hand experience and knowledge. According to the Joint Affinity Group diversity research, foundations that have created programs addressing issues of concern to minority groups require the knowledge of these groups in order to ensure good grantmaking and to develop relationships with and trust among constituencies.(5)
  • Seek out young people with disabilities to serve in intern positions and to participate in other youth-focused activities sponsored by the foundation.
• Address the communications gap between foundations and disability organizations by expanding outreach to disability groups in the application process and clearly signaling their eligibility, providing feedback on rejected proposals, and making some time for site visits and in-person meetings.
  • Add language in published grant guidelines and other materials making it clear that disability groups can apply under all program areas when they have an eligible project.
  • Keep in touch with local disability organizations/consultants to maintain knowledge of local issues and how they interrelate to other issues of importance locally and nationally.
  • Take the time to explain and/or clarify your mission statement, guidelines and other written materials for grantseekers.
  • Include people with disabilities in convenings and other meetings addressing a variety of program areas, not just those that seem to be of particular interest to the disability community.
  • If time constraints prevent site visits, consider scheduling face-to-face meetings in foundation offices and expanding telephone time with disability applicants.
  • Pay attention to subliminal messages by using language that is sensitive to people with disabilities and by including pictures of disabled people in annual reports and other published materials.(6)

Recommendations for Grantseekers

The more effectively disability organizations can argue, with concrete examples, the possibility and importance of incorporating disability into already existing program areas, the better are the chances of getting programs funded. This will also help the field by expanding the universe of disability funders and the number of disability grants.

• Help program officers understand why and how people with disabilities are legitimately included in diversity initiatives.
  • Many foundations have an understanding of diversity as it relates to race and gender. Build on that knowledge to communicate the needs of people with disabilities as an aspect of diversity funding.
• Demonstrate how disability issues intersect and/or are incorporated into other issues of importance to your community.
  • Illustrate how your organization interacts with others in the community addressing the need targeted in your proposal.
• Be prepared to provide demographic and other data about your local disability community to support the need for your proposed program.
  • Funders look for statistics and other documentation to demonstrate need.
• Learn more about foundation program areas and how disability can fit within them.
  • Research foundations online or at Foundation Center collections, and carefully review their priorities and program descriptions.
  • Target specific program areas with your request, and show how your work advances the funder’s program goals.
  • Find a good funding match and be prepared to discuss your proposal.
    • Request clarification if you are not certain that your proposed project fits into the funder’s program area.
• Plan your communication and then take the risk of initiating increased contact.
  • Follow the foundation’s instructions for initiating contact and writing proposals.
    • Many proposals and letters of intent that may be eligible programmatically are rejected because they do not follow application guidelines.
  • Take care to explain terminology that may not be known outside the disability community.
  • While you may encounter difficulties making personal contacts, try to build personal contacts if possible.
    • Respect the time constraints placed on program officers and their position as spokesperson for an organization that has defined guidelines and priorities.
• Take the initiative to educate funders about disability issues.
  • Acknowledge the progress foundations have made in learning about disability while encouraging them to go further.
  • Place particular emphasis and care when submitting requests focused on cross-disability projects, which are not as well understood by funders as disability-specific programs.

Recommendations for the Disability Funders Network

Further efforts to increase disability funding should concentrate on describing the many ways in which foundations with broad grantmaking portfolios can incorporate disability-related issues into their existing priorities.

• Develop messages, materials and programs to help foundations understand disability as an aspect of diversity and major national issues.
  • Collaborate with other Affinity Groups and Regional Associations of Grantmakers to articulate the intersection of issues and create learning materials and opportunities for foundation staff.
• Emphasize basic information and ensure its timeliness and availability by electronic means.
  • Launch a Web site providing information and links on demographics, prevalence of types of disability, best grantmaking practices, disability screening guide and other information for grantmakers.
  • Make sure the Web site is accessible to people with disabilities, and incorporate information and links to assist foundations to make their own Web sites accessible.
• Create and disseminate tools tailored to the needs of different types of foundations.
  • Develop methods of assisting community and public foundations to carry out and expand their already constructive engagement with disability issues.
    • Publicize and disseminate disability audit, Responsiveness to Disability Issues at The Chicago Community Trust, as a model for incorporating disability into major functions of community foundations: grantmaking, community interaction, communications, recruitment, hiring, physical plant accessibility and compliance with the ADA.
    • Work with the League of California Community Foundations to determine and address to specific information needs and policies of community foundations in the state.
  • Develop methods of reaching and communicating with the least engaged group — independent and family foundations.
    • Adapt disability audit to independent and family foundation needs.
  • Develop an approach to corporate foundations leveraging the fact that their employment practices are covered by the Americans with Disabilities Act and that attention to people with disabilities is an important part of their diversity policies and practices.
    • Adapt disability audit to corporate foundations and giving programs.
    • Communicate the untapped market potential of 55 million people with disabilities.
• Cultivate champions inside foundations.
  • Provide tools, information and other resources to assist with internal advocacy.
• Consider when to invest in conferences and workshops and when to rely on printed and/or electronic information.
  • Develop strategies that balance the need to honor the time constraints placed on program officers with the increased learning and experiential potential of workshops, briefings and conferences.