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.

(1) Alternate Formats for Printed
Material, a how-to guide for funders on creating documents on audiotape and
computer disk, and in Braille and large print, is available from the Disability
Funders Network (DFN). [return to citation 1]

(2) Additional information on the
use of these technologies can be found in the 1998 report to The California
Endowment prepared by the Disability Rights Education and Defense Fund (pp.
26-30). [return to citation 2]

(3) Individual Web pages can be analyzed
free of charge by Bobby, a web-based tool that measures web pages for accessibility.
For additional information, visit http://bobby.watchfire.com/bobby.
[return to citation 3]

(4) The Community Technology Foundation
of California maintains an "Access Fund," described as "a targeted
source of funds available to grantees to improve access to their programs. Any
grantee can apply for these additional funds in the amount of $500-$2,500."
[return to citation 4]

(5) Burbridge, et al., p. 4. [return
to citation 5]

(6) See Beyond the AP Stylebook: Language
and Usage Guide for Reporters and Editors, available online at http://www.raggededgemagazine.com/mediacircus/style.htm.
[return to citation 6]