21 posts categorized "Disabilities"

It's time to build a better behavioral health system

June 10, 2021

Mental_healthOur nation's collective mental health has been severely challenged since the start of the COVID-19 pandemic.

Now, as we begin to envision our post-pandemic future, it's important to take a step back and recognize that our behavioral health system needed improvements even before COVID-19, and that it's time for philanthropy to consider taking new approaches to funding and advocating in this area.

For more than a year, the isolation caused by the social and physical distancing necessitated by the pandemic and the ongoing stress created by the disruptions to our daily routines have impacted all of us — and those conditions have led to a massive spike in mental health issues. According to the Kaiser Family Foundation, an astonishing 41.1 percent of adults reported symptoms of anxiety disorder and/or depressive disorder in a January 2021 survey, nearly four times the average seen between January and June of 2019.

The toll has been especially heavy for our most vulnerable neighbors. Isolation has had a tremendous negative impact on the elderly and the young, while the daily stress of living through the pandemic has been especially intense for people of color, families living below the poverty line, the precariously housed, individuals with pre-existing physical or behavioral health problems, and single parents.

Foundations nationwide have recognized these risks and rallied to provide emergency funding to help support many of the urgent mental health needs created by COVID-19. The New York Community Trust (NYCT) — the community foundation where I oversee grantmaking in the areas of health, behavioral health, and biomedical research — has funded efforts to provide mental health counseling to frontline workers and technology to enable mental healthcare providers to connect with patients virtually and ensure that hard-to-reach populations receive the services they need.

These rapid-response efforts were, and remain, critical as we attempt to address the mental health crisis created by COVID-19. But we must now recognize that our system, as currently designed, is not built to accommodate the great need that already existed before the pandemic.

Prior to COVID-19, our systems for delivering mental health care were failing to help the majority of those in need of such support. In 2019, an estimated 51.5 million U.S. adults experienced a mental illness — roughly one in five people over the age of 18 — yet only 44.8 percent received mental health services.

This massive gap is largely the result of our healthcare system's lack of capacity to serve those who need help. Compounding the problem is the fact that even if there were enough trained providers to meet the need, many Americans do not have the means to afford it.

The human and economic cost of this failure is substantial. Each person with an untreated mental illness is a person who struggles to maintain steady employment and help support their family. Our criminal justice system is stretched beyond its limits, in large part because of the extraordinary number of incidents involving individuals who are experiencing behavioral health crises — the very challenges that also prevent millions of Americans from taking care of their physical health.

Imagine if we could rebuild our behavioral health system so it provided the ongoing care that's so clearly needed. Not only would we help those 51.5 million Americans with their mental health, we would create a better workforce, strengthen families, lessen the strain on our police departments and courts, incarcerate fewer people, reduce the number of people experiencing chronic physical health conditions, and increase lifespans. In other words, by putting a focus on mental health, we would be taking a critical step in addressing myriad social issues — and equipping our nation for a healthier and more prosperous future.

Yet for decades, despite our support for well-meaning interventions, both philanthropy and government have fallen short in addressing America's mental health crisis. Instead of improving mental healthcare systems, we've mostly invested in programs that address urgent needs and those in crisis — certainly an important aspect of care, but not the only one.

It's time to take a new approach. Philanthropy and government have an opportunity to join forces to make meaningful structural changes that will help millions of Americans who are not receiving the treatment they need to lead healthy, productive lives. And these changes are not as difficult, or as costly, as you might think.

For example, NYCT, along with Well Being Trust and the Sunflower Foundation, commissioned the Bipartisan Policy Center to study how to better integrate primary health care and behavioral health care. By taking steps to diagnose and treat behavioral and physical health in tandem, rather than separately, the center estimates that we can help improve outcomes for as many as a million Americans over the next ten years.

When I joined NYCT more than two decades ago, a mentor shared the adage “form follows finance.” A twist on the early twentieth-century architecture and industrial design principle of “form follows function,” it is perhaps more relevant than ever to the provision of behavioral health services.

The center's take on better coordination of care between behavioral and physical health is a clarion call for philanthropy to push for better coordination of delivery and financing systems. The federal government and several states have begun to advance models of care that prioritize outcomes over volume and pay for care that is delivered with this in mind.

This is a good start. But philanthropy must do more to ensure that its resources — modest as they are, compared with the country's healthcare spending, which by some estimates is almost 20 percent of our pre-pandemic GDP — ensure that financing aligns with a priority focus on coordinated care across all delivery systems, whether they be hospital- or clinic-based, or in community settings.

It behooves philanthropy to continue to pay attention to many of the root causes of mental and emotional distress that is so prevalent in communities across our country, often referred to as the social determinants of health — the conditions under which people live, work, and learn. Because historical inequities across the board — but especially within the context of race — have hampered such an approach, it is important that our funding address the complex challenges of inadequate insurance coverage, a stressed workforce, and the critical role of non-clinical providers in the delivery of services.

Finally, if America is to achieve a behavioral healthcare system that cares for those in crisis and enables them to manage chronic conditions, philanthropy has a critical role to play in advocating to ensure that financing actually supports such a system.

And for those of my colleagues who work at a community foundation or a grantmaking public charity that can legally engage in lobbying efforts, I entreat you to use that option. Let us imagine and work toward a healthcare system that covers the entire person — mind and body — and makes a healthier, more prosperous, and more equitable America possible.

Irfan_Hasan_NY_community_trust_PhilanTopicIrfan Hasan is deputy vice president for grants at the New York Community Trust, where he oversees health, behavioral health, and biomedical research grants.

Venture philanthropy: The secret weapon for unlocking biomedical research's full life-changing potential

June 04, 2021

Eye_retina_gettyimages_batkeMore than a year into the COVID-19 pandemic, there has been much reflection around "lessons learned" across all sectors. In the biomedical research space, we've seen science meet the urgent need for safe and effective vaccines at miraculous speed to contain the spread of the virus. The mRNA technology used in some of those vaccines has broad implications for future treatments for a variety of other viruses, cancers, and diseases and is a clear indication of how far science has evolved in a short period of time. Imagine what treatments and cures could be unlocked — with the necessary funding.

In the United States, public funding for basic research has long come from the National Institutes of Health, but the U.S. government lags other advanced economies in the amount of funding it provides for the translational research required to convert basic science into tangible patient treatments. And while more public funding for biomedical research at the critical clinical trial stage is essential, it is going to take public, private, and philanthropic dollars to ensure that biomedical research into promising treatments and cures doesn't wither on the vine. Federal programs such as the Cancer Moonshot, state-level initiatives like the California Institute for Regenerative Medicine, and promising legislation aimed at providing private-sector loans to companies developing novel treatments for disease and disability are all helpful — but still leave a funding gap. There needs to be a third leg to stabilize those public- and private-sector efforts, and we believe that third leg is philanthropy.

As successful entrepreneurs and venture investors, we see our donations as investments in the mission of the nonprofit organizations we support. We each have a personal connection to the mission of the Foundation Fighting Blindness: one of us has experienced loss of sight from retinitis pigmentosa as a young adult, and the other has raised two sons with vision impairment caused by Stargardt disease. Based on our personal experiences, we have a keen understanding of what it is like to be a patient or have a loved one waiting for life-changing treatments to become available.

For fifty years, thanks to the generosity of donors, the Foundation Fighting Blindness has successfully funded research in pursuit of treatments and cures for the entire spectrum of inherited retinal diseases (IRDs) and dry age-related macular degeneration (AMD), which together affect more than two hundred million people globally. Yet, more needs to be done. The key discoveries made in labs need to make it into the hands of industry-led therapy developers to conduct clinical testing and win FDA approval. But a gap in funding often prevents this progress, and in this case, the science is now outpacing the funding.

To bridge this funding gap, the Foundation Fighting Blindness created the Retinal Degeneration Fund (RD Fund), a nonprofit, pure-play venture philanthropy investment vehicle designed to help accelerate the technical aspects of the organization's mission and advance its financial goals. Our respective family foundations contributed significant capital to launch the fund, which allowed us to be more involved in the organization's work by funding highly visible activities in biotech startups and spinouts. We've taken concepts and techniques from our venture capital finance and business management experience and applied them to our philanthropic goals of accelerating the progress on treatments and cures, while positioning the organization for long-term sustainability.

Launched in late 2018 with $72 million under management, the first fund is now 90 percent committed, with nine investments plus reserves. This invested capital has attracted an additional $400 million in capital to date from institutional co-investors and has produced its first exit with the sale of Vedere Bio to Novartis for $280 million, enabling the organization to plug a financial gap in its long-range science spending plan and roll over significant funds to seed Fund 2. 

We take comfort in knowing that the venture philanthropy model already has been successfully scaled by the Bill & Melinda Gates Foundation, the Cystic Fibrosis Foundation, and the Juvenile Diabetes Research Foundation, just to name a few. One key element is to manage it professionally and deliberately; one cannot just wander into biotech equity investing without experience, deep scientific know-how, and world-class advice and oversight. The RD Fund has an independent board of directors with expertise spanning retinal biology, clinical ophthalmology, finance, and entrepreneurship, and the board works closely with an executive management team with significant operational, strategic, and leadership experience. Importantly, the fund is able to rely on an international scientific advisory board and leverage the organization's patient registry and clinical consortium. In other words, the brain trust of the Foundation Fighting Blindness and its venture arm have the collective scientific and business acumen to best determine what is or is not an investible mission-related opportunity.

We are encouraged by venture philanthropy's ability to reap a return to be re-invested in furthering an organization's mission, especially in times of economic uncertainty. Most important, our experience has demonstrated that jump-starting the pipeline for treatments and cures through venture philanthropy holds real promise as a viable, scalable approach for addressing other underserved diseases impacting so many.

(Photo credit: GettyImages/Batke)

Gordon Gund_Paul_Manning_PhilanTopicGordon Gund is chair and CEO of Gund Investment Corporation; after losing his sight from retinitis pigmentosa in 1970, he co-founded the Foundation Fighting Blindness with his wife, Lulie, and others. Paul Manning is founder, chair, and CEO of PBM Capital; both of his sons were diagnosed with Stargardt disease.

How human services charities stepped up and filled the gap in 2020

January 18, 2021

Sharp_chula_vista_medical_centerHuman services charities provided an essential lifeline in 2020 to millions of Americans grappling with the economic and health impacts of COVID-19. Indeed, the unprecedented events of the year reinforced the deep-seated value and tangible impact of organizations that support populations in need, from nonprofits operating homeless shelters and food banks to those providing services to the disabled and elderly.

This was especially true of populations supported by the Gary Sinise Foundation, a 501(c)(3) serving veterans, first responders, service members, and their families.

When the economy cratered and the unemployment rate soared in the spring, the foundation quickly saw an uptick in requests for financial assistance — an uptick that became a tsunami by the fall. Their stories were heartbreaking: many had fallen behind on their rent, mortgage, or car payments and were facing eviction or repossession. For others, purchasing groceries for their families came at the expense of making payments on already-overdue bills.

The employment picture for many was similarly bleak. Some of the people we heard from had been furloughed indefinitely or let go from their job, while others were unable to enter the job market because of family obligations at home.

At the Gary Sinise Foundation, we responded to the growing number of requests for help by launching a campaign focused on our constituents.

During a four-month span beginning in April, the Emergency COVID-19 Combat Service campaign delivered 60,795 free meals to hospitals, Veterans Affairs medical centers, and military bases in the U.S. and overseas. At 313 locations across the country, including 273 hospitals and 145 Veterans Affairs sites, pre-packaged meals nourished overworked doctors, nurses, and other medical professionals on the front lines of the pandemic. American troops and their families stationed in Germany and Korea were among those who received meals.

Grant funding distributed through the campaign also provided a lifeline for first-responder departments — particularly those in rural America and volunteer departments supported by a small tax base — enabling them to purchase protective equipment, including N95 face masks, face shields, and gloves. All told, more than $480,000 in grant funding was distributed to fire and police departments in twenty-seven states.

In a relatively short period of time, more than $1.4 million was raised by the campaign despite a raging pandemic and a battered U.S. economy. And those weren't the only challenges. A polarizing U.S. presidential race and bitterly contested election saw donations to the campaign ebb and flow, much as they had in the summer in the wake of racial justice protests sparked by the killings of Ahmaud Arbery, Breonna Taylor, and George Floyd. Still, the campaign went on, enabling the foundation to consistently deliver financial aid and other forms of support to veterans, Gold Star families, first responders, and others impacted in one way or another by COVID-19.

No year in recent memory has presented as many challenges as 2020 to the institutions and core identity of the United States. And yet no year has been as rife with opportunity for human services charities to step up in new and creative ways to help millions of Americans who are struggling.

Given the critical role these organizations play in their communities and the void they fill when resources and funding at the local, state, and federal level are stretched, it's clear they must continue to adapt their services in 2021 to the economic and political realities stemming from the ongoing public health crisis. They will need our support to do so.

There really is no choice. Too many people are counting on us.

(Photo credit: Sharp Chula Vista Medical Center)

Brandon_black_gary_sinise_foundation_PhilanTopicBrandon Black is senior communications writer at the Gary Sinise Foundation.

Challenging ableism through language justice

December 03, 2020

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Social justice movements have long recognized the power of language. The idea of language justice — "the right everyone has to communicate in the language in which we feel most comfortable" — has helped bridge the equity gap when people who speak different languages work together. Multilingual spaces can connect movements across language barriers and build shared power across language differences. Below, we argue that the concept of language justice needs to be enlarged to other contexts and forms of communication — in particular, that by and about disabled people.

In 2017, we launched the Open Society Community Youth Fellowship Program, with a focus on engaging young people as individual grantees through a diversity, equity, and inclusion (DEI) lens. Through this experience, we learned that certain words can have unintended and damaging consequences and can reinforce stigmas related to oppression and ableism. We also learned what it means in practice to apply language justice to all stages of grantmaking, centering disabled people in these processes. Here we want to share these lessons, which both involve listening to and learning from disabled people, in accordance with the disability movement's key principle of "Nothing about us without us."

Shifting power through word use

Discriminatory and stigmatizing words are often used in everyday exchanges. Since the onset of the coronavirus pandemic and with the current political instability in the U.S., there has been widespread use — in emails, tweets, and mainstream media — of expressions such as "You're not nuts. This is a really crazy time!" or "I hope this finds you well during these crazy times," "falling on deaf ears," and "interrogating our blind spots." Politicians are referred to as "mad," "psycho," or "narcissistic." These everyday uses of language can reinforce stigma, implying, even when it is not the intention of the speaker or writer, that people with mental health conditions never make sound judgments, that being deaf means being stubborn, or that being blind means being unaware. Terms like "crazy," "nuts," and "insane" can be especially discriminatory and offensive, particularly when metaphorically used to mean "bad," "bizarre," or "very unusual" (as in "these crazy times").

In applying a language justice approach as funders, we also learned to be intentional in analyzing the words we use to talk about disability. In some parts of the world, disability rights activists tend to prefer "person with disability" to "disabled person," which, they argue, can suggest that one's identity is wholly defined by one's disability, perpetuating stigma and discrimination. In the United Kingdom, however, "disabled person" is widely used by activists due to the stronger prevalence of the social model of disability, according to which a person is disabled not by their sensory, motor, intellectual, or other impairments but by physical barriers, gaps in provision, and social attitudes that marginalize or exclude them. Adherents to the social model prefer "disabled person" because it emphasizes the disabling effects of society and they do not see such phrasing as discriminatory. It needs to be recognized that both of these naming conventions — "person-first" and "identity-first" — are widespread.

The example of autism highlights a different dimension of this debate. The term "neurodiversity" stresses that all people are different in terms of their expectations and identities, and moves us away from pathologization. It was once considered appropriate to say "people with autism," using person-first terminology. But some with lived experience have stated that autism is part of their identity, not an addition, and therefore prefer "autistic person." Disability activists often emphasize a point that Tom Shakespeare has succinctly stated: "[I]t is a good principle to call people by the names they themselves prefer."

Judgments about what terms are acceptable or discriminatory change over time. Many words referring to people with intellectual disabilities that are now regarded as highly stigmatizing were once used in scientific communities, as well as in official medical and educational policy documents, as legitimate descriptions of certain individuals and their genetic conditions. This does not mean that those words were not already problematic; it just means their connotations and the extent of their social acceptance changed over time until they eventually became unacceptable and taboo.

The word "cripple," and in particular its shortened form "crip," is a particular case. In the last two decades, disability activists have reclaimed "crip" and "cripple" as positive terms, as a badge of identity, flipping their connotations against their oppressive usage in much the same way "queer" was reclaimed by the LGBT movement. As an article written early in that process explained, "by reclaiming 'cripple', disabled activists take the image in their identity that scares outsiders and make it a source of militant pride." It remains problematic, however, for non-disabled people to use the term, even if their intention is to express solidarity with the disability rights movement. Here, too, people with disabilities must be in control of decisions about language that refers to them.

The point is not to "police" or "cancel" certain ways of talking, to ban certain words and elevate others, but to argue that we all need to be aware that expressions like these carry considerable power and can reinforce negative narratives, stereotypes, and discriminatory attitudes. Prejudiced language is endemic in society. As funders working through a language-justice approach, we need to recognize this and be guided by what disabled people themselves feel and say is discriminatory, stigmatizing, offensive, and/or hurtful. This is a basic principle of language justice in relation to disability.

Shifting power with language justice in grantmaking practices

In a grant-giving context, as elsewhere, a language-justice approach can help shift power and challenge ableism at each stage of a grant cycle. We learned that implementing these approaches meant rethinking timelines and systems based on notions of urgency and perfectionism. It does take longer to create the conditions and the spaces where people can exercise their power in their own language and in ways that are accessible for them. Looking, even inadvertently, for conventional kinds of "perfection" in applicants or our own operational processes can reinforce existing power relations and made us reflect on the intersections between ableism and other forms of discrimination, as highlighted by the Disability Justice movement. Based on our experience, we offer some suggestions on how language justice can be implemented through grantmaking practice.

First, reduce barriers and widen participation, calls for proposals must be accessible. This means application materials should be translated into the languages used by potential applicants' communities and also re-worked into Easy-to-Read, a format that conveys information in short sentences with widely used and easily understood words in combination with images, or Plain Language. Word, PDF, and Power Point documents should use accessible document formats. Informational webinars or events should be conducted in the languages used by applicants (with interpretation for the funder, if needed), as well as offered with sign language interpretation and Communication Access Real-Time Transcription to enable better information access.

Second, applicants should be given the choice to submit their materials in different communication formats (written, video, audio, etc.). No one method of communication should be imposed. For example, requiring only written submissions — even for only one part of the application — could exclude some signing Deaf people. If interviews are conducted, simultaneous or consecutive interpretation should be made available.

Third, once the successful applicants have been selected, welcome documents and other important information should be provided in Plain Language, and in the languages and formats used by the communities they represent. The same applies to reporting requirements, which are often daunting and technically complex. Grantees should have the option of submitting reports in their language or format of choice (video, audio, etc.). In our case, this then meant transcribing reports to meet the required formats of our institution. When grantees come together for virtual or in-person meetings, they must be asked well in advance what accessibility and accommodation supports they will need. The Autistic Self Advocacy Network and European Disability Forum offer excellent guidance for accessible meetings.

Final thoughts

Language justice is about challenging a widely accepted and internalized reality of exclusion and the dominance of institutionally powerful cultures and people. For us it has meant checking our own privilege as people holding particular kinds of institutional power. It has also meant acknowledging that we need to learn from the communities we want to support. Listening carefully is just as important as speaking.

Rachele_tardi_zachary_turkRachele Tardi is the director of and Zachary Turk is a program officer with the Youth Exchange at the Open Society Foundations.

The power of diverse boards: an argument for change

June 04, 2020

Diversity_board_PhilanTopic_GettyImagesWe have a lot of work to do. Most of us have known this for some time, but the events of the last few weeks highlight just how much work remains to be done. The fight for diversity, equity, and inclusion never ends, and a clear and ongoing commitment to all three is needed if we are to create positive change. That commitment must start at the top.

Boards of directors operate at the highest level of organizational leadership, with each director expected to play a role in the development of the organization's strategic vision, operations, and overall culture. Numerous studies have shown that diversity positively impacts a company's financial performance. Indeed, a McKinsey & Company study found that firms in the top quartile for ethnic diversity in management and board composition are 35 percent more likely to earn financial returns above their respective national industry median.

Is the same true for the social sector? Is it important for nonprofit boards to embrace and model diversity, equity, and inclusion? The answer, unequivocally, is yes, and here's why:

Diversity drives organizational performance

Diversity inspires innovation. A board that is diverse in terms of ethnicity, gender, and skill sets is more likely to generate innovation and push all its members to be more creative and open-minded. Today more than ever, social sector organizations need to develop multiple revenue streams, and leading-edge expertise in areas ranging from strategy to financial planning to operations is critical to a board's ability to conduct effective oversight.

Diversity catalyzes creativity. Diverse boards tend to be better at creative problem solving. Those who have had to adapt to physical disabilities encounter challenges on a daily, if not hourly, basis, while those subjected to systematic racism have had to adapt their entire lives. The ability to overcome challenges often translates to adaptive leadership, opening a world of possibilities in terms of program execution and organizational management.

Diversity fosters network breadth. Current or past clients who serve as board members add an element of authenticity and credibility to board deliberations and can serve as a "voice of experience" that informs and improves program planning. A greater awareness of who is actually being served gives boards information they need to develop strategies grounded in real-world facts. Such an understanding also provides context for proper resource allocation and effective strategic action, while helping to deepen an organization's relevance and impact.

Inclusion drives action

Let's try a thought experiment: take away all the benefits created by more diverse boards and imagine what the sector would look like :

  • too many nonprofits relying on a single, precarious revenue stream;
  • approaches to problem solving that are never improved on because "it has always been done that way";
  • clients who are viewed as beneficiaries rather than as equal partners in collective change efforts;
  • recruitment of staff and donors from among those who look and think like us; and
  • logic models and outcomes metrics informed by a single point of view.

Something magical and important happens when differences not only are not dismissed but are valued. But the benefits that diversity brings to a board are unlikely to be realized without an equal focus on inclusion. The perspective of all board members must be continuously sought and heard, and differences of opinion should always be welcomed.

Equity is the result

Equity and systems change are the outcomes of leaders fully embracing diversity and inclusion. In the absence of inclusion, it is too easy to become comfortable in our silence. Without diversity of thought and perspective, our value systems are compromised and systemic injustice goes unchallenged.

It is clear that board diversity, equity, and inclusion matter for all organizations, and especially so for nonprofits. To truly maximize a nonprofit's effectiveness, as well as its financial success, nonprofit boards must work diligently to ensure that different viewpoints are heard and incorporated. Change doesn't happen automatically or overnight. Boards must actively seek out those who can bring new perspectives to the table and challenge the status quo.

For those who currently serve on a nonprofit board, now is the time to act. Speak to your colleagues about steps the board can take to develop internal policies aimed at strengthening its diversity and begin to build a foundation for organizational leadership that supports change.

Similarly, if you've ever considered lending your time and talent to a nonprofit, now is the time to connect with one that is aligned with your passion and expertise. In these challenging, uncertain times, nonprofits are looking for all the expertise they can get their hands on.

The success of any organization starts at the top. Boards that want to maximize their effectiveness and performance must include socially and professionally diverse individuals who are committed to doing the work and are prepared to speak up and act for change. Good luck!

Pam Cannell_for_PhilanTopicPam Cannell is CEO of BoardBuild and has dedicated her entire career to nonprofit leadership and board governance.

Reimagining Power Dynamics From Within: How Foundations Can Support Child and Youth Participation

January 16, 2020

Youth_climate_activists_350orgInvolving children and young people in our work — as grantees, consultants, researchers, and/or key informants — helps support their right to shape how the issues that affect their lives are addressed and makes our work as funders more impactful. Philanthropies should consider the right to participation — a key right in democracies — an important aspect of their Diversity, Equity, and Inclusion (DEI) efforts.

The climate movement, for instance, has been very successful in drawing critical attention to the power of children and young people to organize and pressure governments to take action on an issue of urgent concern to them. Other examples include mobilizing support for the Sustainable Development Goals, gun violence prevention, and the rights of working children.

If, as funders, we are committed to supporting young climate activists at the local, national, and international levels, we also need to create spaces within our organizations for them to influence our thinking and ways of working. At the Open Society Foundations, the Youth Exchange team strategy refers to this as "modeling behavior," a form of "prefigurative politics": creating, here and now, in our organizational practices, the change we want to see more generally in society. While many in the philanthropic space already support young activists and guidelines already exist as to how to provide financial and non-financial support to child and youth organizers and child- and youth-led organizations, there are many others who wonder how they can do that.

The Open Society Youth Exchange team thought the start of a new year would be a good time to share some best practices — drawn from our own experiences as well as literature in the field — with respect to engaging children and young people in donor spaces and conversations and giving them the space to tell us how best to support their movements generally and the climate movement more specifically.

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ADA and Web Accessibility Guidelines for Nonprofit Websites in 2019

September 10, 2019

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Signed into law in 1990, the American Disabilities Act (ADA) prohibits discrimination against people with disabilities and is aimed at making all public spaces inclusive and accessible to everyone. The ADA Amendments Act of 2008 later clarified the "definition of 'disability' to ensure that [it] would be broadly construed and applied without extensive analysis."

Let's take a look at how the ADA has affected websites in recent years, as well as what compliance entails for nonprofit organizations.

Until recently, organizations with websites were encouraged to comply with established Web accessibility standards, although compliance is not mandatory. The details of compliance were a hot topic of discussion as recently as June 5, 2018, within the World Wide Web Consortium (W3C), a private organization that recently released updated guidelines for its Web Accessibility Initiative (WAI).

The primary goal of WAI is to make the Internet a place where anyone can get involved "regardless of cognitive, neurological, visual, speech, physical, or auditory disabilities they may be burdened with." The guidelines developed by the initiative — with the help of disability organizations, government resources, and research labs — are known as the Web Content Accessibility Guidelines (WCAG), the latest version of which is WCAG 2.1.

A Top-Down View of What WCAG Compliance Entails

Adoption of WCAG includes providing text options for non-text content, clear titles for Web pages, "disability-considerate colors," and straightforward site structure so that people with focus-related disorders can navigate the site. It's worth noting that many websites were already compliant with the guidelines.

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Weekend Link Roundup (April 20-21, 2019)

April 21, 2019

Redacted-Legal-Documents-1And...we're back with our weekly roundup of noteworthy items from and about the social sector. For more links to great content, follow us on Twitter at @pndblog....

Disabilities

In a post on the Ford Foundation's Equals Change blog, the foundation's Noorain Khan and Catherine Townshend update readers on the foundation's disability inclusion journey.

Diversity

On the GrantSpace blog, Julieta Mendez, director of programs at Candid, explains how the organization's DEI programs are supporting the social sector.

Education

"Seven years after the state passed a law that required Maine’s high schools to award diplomas on the basis of demonstrated 'proficiency' in eight key areas, and nine months after the legislature repealed that mandate, the debate over proficiency-based diplomas continues to divide districts, teachers and families...even as the concept spreads to other schools and states." Kelly Field reports for the Hechinger Report.

Health

A proposed Trump administration rule to allow employers to fund individual, tax-preferred accounts for employees rather than cover them under employer-sponsored group plans could shift individuals from employee-sponsored plans to state-regulated individual markets and end up destabilizing those markets. Georgetown University professors JoAnn Volk and Kevin Lucia dig into the details on the Commonwealth Fund's To The Point blog.

Impact/Effectiveness

Charity Navigator, in partnership with Feedback Labs, Candid, GlobalGiving, Listen for Good, Acumen, the BBB Wise Giving Alliance, Bridges Fund Management, Development Gateway, and Keystone Accountability, has announced the release of version 1.0 of the Principles of Constituent Feedback, an effort to begin collecting and publishing the reflections of nonprofits on their feedback practice before #GivingTuesday 2019.

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Weekend Link Roundup (April 14-15, 2018)

April 15, 2018

Uncle-sam-taxesOur weekly roundup of noteworthy items from and about the social sector. For more links to great content, follow us on Twitter at @pndblog....

Arts and Culture

Lincoln Center president Deborah L. Spar, who left the top job at Barnard College to helm the performing arts mecca, has decided to step down after only a year. Robin Pogrebin and Michael Cooper report for the New York Times.

And across the East River, the Brooklyn Museum has come under fire for its decision to hire a white woman, Kristen Windmuller-Luna, as a consulting curator for African art. Alex Greenberger reports for ArtNews.

Civil Society

Writing in openDemocracy's Transformation blog, Vern Hughes, director of Civil Society Australia, suggests that the problem with the public and private sectors' "embrace of ‘civil society’ is that it bears little resemblance to what civil society actually is or means. Most of civil society is not constituted formally or headed up by a CEO," adds Hughes. Indeed, "[j]ust 40 years ago, very few not-for-profits or charities had CEOs at all: that term was associated with the corporate sector, and few community groups or charities had even contemplated mimicking the language and culture of such a different sphere. But in just four decades all this has changed, and it has changed at an extraordinarily rapid rate, with very little public discussion or scrutiny of the enormity of the organizational transformation involved and its social and political impact."

Roused by certain statements made by Mark Zuckerberg during his testimony to Congress earlier this week, Philanthropy 2173 blogger Lucy Bernholz shares some thoughts about the often-unappreciated role that civil society organizations and nonprofits play in curating and moderating content for the Facebooks of the world.

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Funding Disability Arts

October 09, 2017

The following post is part of a year-long series ;here on PhilanTopic that addresses major themes related to the center's work: the use of data to understand and address important issues and challenges; the benefits of foundation transparency for donors, nonprofits/NGOs, and the broader public; the emergence of private philanthropy globally; the role of storytelling in conveying the critical work of philanthropy; and what it means, and looks like, to be an effective, high-functioning foundation, nonprofit, or changemaker in the twenty-first century. As always, we welcome your thoughts and feedback.

Fudning for disability artsThe stage has been set for a new and vibrant era of funding for disabled artists and disability arts. A spate of innovative programs — Dance/NYC’s Disability. Dance. Artistry. Fund, Alliance for Artist Communities’ Creative Access Fellowship Program, and the Apothetae and Lark Playwriting Fellowship, among others — are putting new dollars into art made by and with disabled people and raising the bar for the broader philanthropic sector.

With CreateNYC, released this summer, the City of New York established the first cultural plan in the United States with disability-specific strategies for expanding cultural access, including a new fund for disabled artists, cultural workers, and audiences. In this and other ways, the city is modeling the kind of leadership that is urgently needed at all levels of government.

Because they embrace disability as a positive artistic and generative force, these efforts are already generating value. They also represent a shift in arts philanthropy, where the exclusion of disabled people is entrenched and where niche disability-specific funds largely have been limited to facility improvements or programs focused on the therapeutic and educational benefits of the arts. And they are demonstrating how, by funding the field of disability arts and its workforce, philanthropy can move the whole creative sector forward — and, by extension, drive social change.

The moment is rife with opportunity. On the one hand, there are opportunities for more expansive disability-specific funds. Indeed, a new generation of disability arts organizations and fiscally sponsored projects is primed for capacity-building investments, and there are critical gaps in funding for disabled artists along the artistic development continuum, from public school classrooms to professional studios and stages.

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Toward More Inclusive Diversity in the Philanthropic Sector: LGBTQ People and People With Disabilities

July 28, 2017

DiversityThe philanthropic sector has taken steps to address the lack of inclusion of women and people of color in its talent pool. But newly released research from the Council on Foundations reveals that several demographics often are missing from philanthropic talent conversations and decisions.

The reason for this may well be a lack of data. For almost thirty years, the council has collected data on grantmaker staff composition and compensation in the United States. Our annual Grantmaker Salary and Benefits Survey represents a set of data points from more than a thousand grantmakers, including data on nearly ten thousand full-time paid professional and administrative staff members.

Using this rich dataset, we analyzed the demographics of the philanthropic sector looking back five and ten years, with a focus on the representation of women and people of color. Our recently released report, State of Change: An Analysis of Women and People of Color in the Philanthropic Sector, highlights findings based on that analysis.

Even our large dataset, however, lacked sufficient data for us to be able to conduct any meaningful analysis with regard to sexual orientation, gender identity, and physical/intellectual disability.

That raises a number of important questions. Are the LGBTQ population and people with disabilities simply underrepresented within the talent pool available to the sector? Are survey respondents reluctant to report on these particular demographics? There are no simple answers. Much has been said about the underrepresentation of women and people of color in top jobs at the nation's foundations, and several organizations have developed fellowship and pipeline programs designed to bolster the diversity of the next generation of philanthropic leaders. Role models such as the California Endowment's Robert K. Ross and the W.K. Kellogg Foundation's La June Montgomery Tabron also serve as champions for the importance of diverse and inclusive institutions that embrace equitable grantmaking practices.

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Weekend Link Roundup (April 23-24, 2016)

April 24, 2016

BarerootcherrytreeOur weekly round up of noteworthy items from and about the social sector. For more links to great content, follow us on Twitter at @pndblog....

Arts and Culture

Americans for the Arts has released the sixth and final edition of the National Arts Index, its annual report the health and vitality of arts and culture in the United States. This edition, which covers the years 2002-13 and includes data on eighty-one national-level indicators, provides "provides the fullest picture yet of the impact of the Great Recession on the arts — before, during, and after." You can download the full report (4.38mb, PDF) a one-page summary, and/or previous reports from this page.

Climate Change

On his Nonprofit Chronicles blog, Marc Gunther suggests that is we are to avoid the worst effects of global warming, we not only have to radically reduce greenhouse gas emissions, we'will also need to figure out how to pull vast amounts of carbon dioxide out of the air. It's a daunting challenge, but we've got "a decade or two, perhaps" to figure it out, Gunther adds, and philanthropy, which has yet to devote much money to research on these technologies, has a real opportunity to make a difference.

In a Q&A here on PhilanTopic, the United Nation Foundation's Reid Detchon explains the significance of the Paris Agreement, which representatives of more than a hundred and seventy countries signed at a ceremony at the UN on Friday. And in a post on Medium, the National Resource Defense Council's Reah Suh argues that the accord represents the greatest opportunity the world has had to shift "from the carbon-rich fossil fuels of the past to the clean energy options that can power our future." home and abroad.

Disabilities

Google’s philanthropic arm, Google.org, has just awarded $20 million to thirty nonprofits working to engineer a better life for the disabled around the globe. Wired's Davey Alba has the details.

Education

On her Answer Sheet blog, Washington Post reporter Valerie Strauss shares key takeaways from Teachers Talk Back: Educators on the Impact of Teacher Evaluation, a new report written by a team of teachers and administrators headed by veteran educator Anthony Cody, co-founder of the Network for Public Education, and education historian and activist Diane Ravitch.

The Nellie Mae Education Foundation has launched an initiative called the Better Math Teaching Network. Learn more here.

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Most Popular PhilanTopic Posts (July 2015)

August 01, 2015

It was a typically hot and muggy July in most places, but here at PhilanTopic it was an especially cool month, with new posts from Sarah Gunther and Diana Samarasan related to the release of an updated Foundation Center report on funding for global human rights, three posts full of great fundraising and governance advice for nonprofit leaders, a new Q&A with Jean Case, and the latest installment in Matt Schwartz' Cause-Driven Design series topping the list of the most popular posts on the blog. What, you were on vacation? Don't sweat it. Here's your chance to catch up....

Read, watched, or listened to anything lately that surprised or made you think? Share your find with others in the comments section below, or drop us a line at mfn@foundationcenter.org.

Being Counted: Funding for People With Disabilities

July 16, 2015

"It's a sad truth that in many developing countries people with disabilities simply don't count. No data is collected on their disabilities nor their abilities, so it’s as if they just don’t exist…."

— Former UK parliamentary undersecretary for the Department for International Development (DFID) (quoted in the Guardian)

Disability_symbolsRecognizing that, to date, development goals have not been reached because people at the margins have not been included, the concept of "leave no one behind" has been a key part of the post-2015 development process. Among those left behind have been people with disabilities who, until the publication of the first World Bank/World Health Organization World Report on Disability in 2011, were not specifically enumerated among the world's population.

As it turns out, people with disabilities make up an estimated one billion people around the world. That is 15 percent of the world's population, or one in every seven people. Further, children with disabilities are the single largest group excluded from school, making up 30 percent to 40 percent of the out-of-school population according to UNESCO. Women with disabilities are 40 percent more likely to be victims of domestic violence than other women, and 20 percent of the poorest people in the world are people with disabilities.

Despite these dire statistics, most countries in the developing world either do not count their populations with disabilities or do not use standardized methods to do so, meaning that official data on persons with disabilities and the conditions they live in is poor or absent.

Until recently, this was also the case among human rights funders and human rights organizations. Disability — considered a charity or medical issue — was not delineated as a human rights concern. Indeed, it was only in 2010, following the implementation in 2008 of the UN Convention on the Rights of Persons with Disabilities, that even as formidable an advocate as Human Rights Watch started systematically reporting on rights abuses against persons with disabilities.

Thus, when the International Human Rights Funders Group (IHRFG) and Foundation Center initiated a project in 2010 to map global human rights grantmaking, I was excited that the project would include people with disabilities among the recipient populations to be tracked. For the first time, people with disabilities would be listed as a population of concern for funders making human rights grants.

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Is Your Philanthropy 'Autism Aware'?

April 02, 2014

(Peter Berns is chief executive officer of The Arc, the largest community-based organization advocating for and serving people with intellectual and developmental disabilities and their families in the nation.)

Headshot_peter_bernsOver the last six years, the Centers for Disease Control and Prevention has updated its estimate on the number of kids in the United States with Autism Spectrum Disorder ("ASD" or "autism") from 1 in 125 in 2008, to 1 in 88 in 2012, to 1 in 68 today. That's a staggering increase.

Children, youth, and adults with autism, as well as those with other developmental disabilities, are part of the fabric of society. They attend the preschools and kindergartens that many of you are working to improve and can be found among the ranks of students striving to succeed in school and go to college. You'll find them among the unemployed struggling to find a job, among patients with chronic conditions searching for adequate care, and among the homeless. Many of them are active in the visual and performing arts or enriching society through their scholarship, activism, and community service. Their family members and friends are everywhere you look. They are not going away, nor should they.

Autism is part of the human condition; it permeates every aspect of our communities because it is a fact of life. Which is why, regardless of grantmaking priorities, foundations and philanthropists must be autism aware and do more to incorporate a "disability dimension" into their work.

Think about it. Is it really possible to affect the "school-to-prison pipeline" without taking into account what's happening in the special education system or statistics recently released by the U.S. Department of Education’s Office of Civil Rights which show that students with disabilities experience higher rates of discipline, suspension, and involvement with law enforcement than students without disabilities? Is it really possible to effectively address domestic and sexual violence if you don't know that people with intellectual and developmental disabilities (I/DD) experience such violence at a much higher rate – three times as high for women with disabilities, and twice as high for men with disabilities – than the general population? Is it really possible to address chronic unemployment without considering that people with autism and other I/DD experience much higher rates of unemployment – as high as 80 percent – and need much more in the way of supports and interventions in order to secure gainful employment?

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Quote of the Week

  • "[L]et me assert my firm belief that the only thing we have to fear is...fear itself — nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance...."


    — Franklin D. Roosevelt, 32nd president of the United States

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