1) There are disappointingly few funders who name disability justice, services, and inclusion as a priority. What needs to be done to change this? How do you speak to other funders about the need for more philanthropy focused on disability?
As we embarked on our journey into this very important work, we are surprised by the lack of fellow travelers within the funding community. I do think our society’s collective history and treatment of individuals who experience Intellectual or Developmental Disability (IDD) has heavily influenced the landscape we are navigating today, a landscape shaped by exclusion, fear, stigma, and a short-sighted focus on perceived deficits rather than unique attributes and individual potential. It wasn’t that long ago that parents of a child born with IDD were faced with an insistence on institutionalization rather than a range of supports. There were little to no social enrichment activities, educational support methods, or employment opportunities, let alone a pathway toward greater independence.
For the most part, IDD individuals remain an incredibly marginalized, isolated, and invisible part of our community. Since support has mostly been provided (and funded) by families or government-funded entities, a lack of awareness has resulted in a small number of funders. In fact, a fellow funder recently remarked that we are tackling a “lonely issue,” and we are determined to shift that paradigm. Those funders who have a history of supporting programs and initiatives focused on disabilities are often family foundations that have a personal connection to the work, like The Kuni Foundation. This is not an excuse, but rather a way to understand the current funding landscape as we seek to change it. We need to identify gaps in knowledge in order to educate funders about the need, and the opportunity. While our country has made strides over the years in terms of education, employment, health care, and housing supports, and inclusion, we have a long way to go. That’s where we have an opportunity to engage funders and stakeholders from all sectors who embrace and activate diversity, equity, inclusion, and access (DEIA). While I was at first dismayed at how often disability was left out of efforts focused on DEIA, I now see it as an opportunity to open up conversations and build awareness among my peers and other stakeholders.
What’s even more exciting is that a new generation of individuals who experience IDD are actively and persistently ensuring that DEIA includes a robust emphasis on disability. It’s exciting to see the energy and momentum of this next generation of advocates, and I believe these efforts will help to ignite more funders. A fantastic example of this paradigm shift in the leadership of the Robert Wood Johnson Foundation, which recently co-founded the formation of the Presidents’ Council on Disability and Inclusion in Philanthropy. Council members have collectively committed $10 million over five years to this important work.
2) How have you seen the sector change?
There is a growing emphasis on recognizing each person’s potential and unique attributes rather than viewing intellectual disability through the lens of the deficit. My son’s public school took a very robust, inclusive approach for youth who experienced intellectual disabilities. My son’s mantra became, “Different, not less” as he engaged in educational and social opportunities with neurodiverse youth. It’s a philosophy that has become completely integrated into his value and belief system and I don’t think he could imagine a world that was any other way. Micaela calls her generation and my son’s generation inclusion natives because they haven’t known a world where individuals who experience IDD were sequestered and hidden. That emphasis on possibility and community is a catalyst for new approaches to housing, health care, education, and employment opportunities, among other things. Companies like Microsoft and accounting firm EY are recruiting individuals with autism, the GAP features model Kayla Kosmalski, who has Down Syndrome, in advertising campaigns, and Sesame Street’s newest character, Julia, has autism. I attribute these changes to a new generation of individuals who experience IDD — and their families and friends — who together are disrupting archaic perceptions, programs, and perspectives and blazing a truly inclusive trail toward a better world. That’s one of the reasons we were so impressed with the work of The Kelsey, it’s an organization that is disrupting the status quo with inclusion as a leading value to its housing approach. To that end, the approach to housing is rapidly changing, moving from group homes to more inclusive models. The catch is that many of these models are untested, which makes funders reluctant to invest. At The Kuni Foundation, we invest in both proven and experimental models. There will never be a single housing model that meets the diverse needs of every community, and funders need to be willing to support proof-of-concept efforts in order to find more inclusive sustainable approaches.
3) What are the biggest risks or challenges you see for the future of disability justice?
Complacency. Archaic systems. Outdated policies. President John F. Kennedy made disability justice a civil rights issue. No other President since then has elevated disability rights to the same level of importance, and while we made incredibly important gains during that time, we have been fighting the tide of inertia from a systems perspective.
Each small step deserves celebration, yet I worry that people will see Kayla’s beautiful face in a GAP ad or Julia on Sesame Street, or get to know their neurodiverse colleague at work and think that our collective work and responsibility is complete. For every Kayla, there are hundreds of youth like her who will age out of school-based support systems at 18 and won’t have a path forward. The systems, policies, and programs that were created decades ago are not aligned with the needs, goals, and potential of millions of individuals in our country who experience an intellectual or developmental disability. Funding alone will not resolve all of these issues or bring about the comprehensive system change needed to drive sustainable, long-term change. We believe that advocacy, in tandem with funding, plays an integral role in shaping policies, programs, and systems that enhance the lives of IDD individuals. We also believe that advocacy is an ongoing endeavor that is necessary for changing/maintaining policy and system change. We can’t continue to coast on policies that were made decades ago. We also need to be willing to take risks and invest in new models and new ways of thinking.
4) What organizations or individuals are you excited by in the disability justice space? Who is doing good work that more people should know about?
There is a lot of fantastic, inspiring work happening in this space. We are so proud of the team at The Kelsey, and believe the approach, the respectful efforts to build consensus and understanding across communities, and the unwavering emphasis on inclusion is an important element of advancing policy and system change while testing new housing models. Community Vision, a Portland, Oregon based nonprofit has been engaged in this work for decades and provides comprehensive support and navigation (employment, education, homeownership, building community and connection) to individuals and families who experience disability. Their Assistive Technology Lab is a phenomenal resource for the community and their advocacy work is both vital and strategic. Inclusive Community Collaborative — also based in Portland — is advancing a co-housing inspired model that includes both subsidized and market-rate condo units and is focused on building a diverse community that includes individuals of varying ages, abilities and economic circumstances. A number of units have already been spoken for, and individuals are meeting on at least a monthly basis in order to build community before moving in. I also have to give a shout out to Integrated Community Services (ICS) in San Rafael, and the incredible advocacy of Abby Yim and her highly successful approach to employment for individuals who experience disability. The team at ICS focuses on Marin County, and partners with over 300+ people with any type of disability on their path to independence. This is just a sample of diverse groups that are supporting, advancing and celebrating our IDD community and it’s exciting to see this work gain momentum.