Living on $710 a month from SSI, Risa, a woman with disabilities who graduated summa cum laude from a top university, cannot find a job. The day will come when her aging parents, with whom she lives, can no longer care for her and $710 a month in a San Francisco suburb will not go far. With basic accomodations, Risa could be an asset to many companies--smart, witty, and technologically savvy.
Disability affects millions of families and it is not an isolated or rare phenomenon.
Yet many funders in the poverty arena do not view disability as a poverty issue. And funders in the youth violence area do not always realize that persons with disabilities are more often victims of sexual abuse and other violence. Even civil rights funders may be slow to embrace disability issues. If funders who study poverty, violence and civil rights don't see the disability issue as part and parcel of poverty, violence and exclusion, the lack of attention to a huge segment of our population leaves critical needs unaddressed.
Jay Ruderman, President of the Ruderman Family Foundation operating in Boston and Israel, understands how ironic it is that this large minority of society is invisible. When he speaks to any room of people and asks if they or someone in their family has a disability, the majority of hands go up. "Yet why," he asks, "are disability issues a niche side issue and not a central one relevant to every aspect of philanthropy and life?"
Susan Parish, Director of the Lurie Institute for Disability Policy at the Heller School at Brandeis University, says, "People with disabilities are the largest minority in the U.S at about 20% of the population. Poverty is an urgent problem because of the limited employment opportunities and the inadequacy of the safety net." The maximum supplemental Social Security payment, currently at $710, is well below the federal poverty level.
Parish, a prominent researcher in the field, suggests that all foundations, whether they have disability as a funding priority or not, should "require grantees to have a certain percentage of their workforce represented by people with disabilities. And yes," she says, "I do mean quotas."
Parish says that experience with legislation like the ADA suggests that employment-based discrimination against people with disabilities is entrenched and pervasive despite laws on the books. "Without aggressive measures, the situation is unlikely to change," she says. Jean Whitney of the Carl and Ruth Shapiro Family Foundation in Boston agrees and says that disability rights are clearly a "civil rights" issue. Ruderman says his foundation would consider implementing guidelines to encourage grantees to step up their efforts to employ persons with disabilities.
Stan Goldman, a program director at the Harry and Jeannette Weinberg Foundation in Baltimore, a foundation that funds services for people with disabilities, disagrees on quotas.
Through a soul-searching process, Baltimore's Weinberg Foundation came to see disability as a primary force that cements poverty. Unlike the Shapiro Foundation where the founder had family members with disabilities, the Weinberg and Ruderman Foundations were not motivated by personal connections, just by the glaring inequities people with disabilities face.
Goldman of the Weinberg Foundation advises other philanthropies to consider the issue of inclusion in their funding decisions. He advocates ending support for segregated schools, even when parents are in favor. He says inclusion as a strategy, along with comprehensive services involving housing and education, contributes to normative behavior both by people with disabilities and people without.
"Jobs with decent salaries, working alongside others without disabilities, apartments with affordable rents, that are not segregated, are more important than quotas for grantees," he says.
Jeff Keilson, Senior Vice President at Advocates, Inc. in Framingham, MA, says that one of the most significant concerns he hears from people with disabilities is about loneliness. He encourages foundations to figure out how to support people in having relationships. "Even beyond inclusion, people who have no friends to do things with feel isolated," he says.
The Weinberg Foundation addresses the more emotional challenges as well. "Even a $5,000 uptick in income above SSI can make a big difference. A new shirt for work, or the ability to attend a social event can be significant," says Goldman.
Ruderman stands solidly behind his position and will not fund any organization that is not inclusive. " As a society we don't really believe that people with disabilities are the future of their communities--we continue to brush aside people with disabilities--but if we are focusing on real social justice and fairer and equitable societies, we have to," Ruderman says.
The Ruderman Family Foundation goes a step further and awards $250,000 in annual Ruderman Prizes in Disability to a select group of the most inclusive organizations and then publicizes the winners as examples, hoping to inspire other organizations to follow suit.
Partnerships between government, the private sector and foundations are also reaping success. The Weinberg Foundation partners with the City of Chicago and works with developers to provide enough funds to set aside some apartment units for persons with disabilities, leveraging tax credits, and federal and state housing finance agency resources.
The Ruderman Family Foundation partners with the government of Israel and the American Joint Distribution Committee to offer comprehensive programs for people with disabilities in that country.
The New York State Health Foundation has funded the New York Association on Independent Living (http://www.ilny.org/) to guide New York State's implementation of Community First Choice, a provision under the Federal Affordable Care Act (ACA) that offers states financial incentives to promote alternatives to institutionalization and nursing home care so that individuals with disabilities can access services while living at home.
Amy Shefrin, a Program Officer at the New York State Health Foundation (NYSHealth), says, "Disabilities are gaining more recognition among philanthropists, but it is challenging to attract funders who want to see impact and change when the funders themselves may mistakenly perceive disabilities as having an immutable status."
"Once governments and people are educated," Ruderman says, "they do change behavior." An example demonstrating that governments can change was a project funded by his family's Foundation urging Israeli officials to close institutions housing people with developmental and psychiatric disabilities. Israeli officials now say they better understand the inclusion issue and plan to start closing those institutions.
Goldman also encourages philanthropies to disseminate evidenced-based research on what works. The J.E. and J.Z. Butler Foundation of New York and Massachusetts and the Ruderman Foundation have done just that. The two foundations have jointly funded Associated Grantmakers of Boston (AGM) to convene a disability funders group to encourage sharing of research and information and foster collaboration.
And recognition of these issues is spreading to the corporate sector as well. Liberty Mutual is currently sponsoring a Disability Inclusion Initiative.
Whitney from the Shapiro Foundation says "the key is for funders to work together, change attitudes and highlight individuals that have so much to offer."
Still, often absent are the voices of persons with disabilities. Advocates encourage funders to have representatives of the disability community present as an important ingredient in the inclusion mantra that is so often heard: "Nothing about us without us." Risa would be a great board or council member.