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Dear Americans with Disabilities Act: 35th Anniversary

Dear 1990 Americans with Disabilities Act (ADA), 

The last time I reached out to you was three years ago. But today, I ask that you meet me where I am: that fine line where outrage meets heartbreak because that is where this letter comes from. Still, at the end of this letter I invite actions to be taken because that’s the only option available to us when we meet authoritarianism with our fiercest expressions of hope for our democracy, love for our communities, and conviction in our movement’s boldest dreams. 

Our Democracy’s Future Requires Disabled People to Continue Dreaming

I have often described you as a “Welcome” mat to others who may be newer to understanding disability rights. While we both know that compliance with you is the minimum and not enough to dismantle ableism – you are a starting place, a simple yet groundbreaking promise for true inclusion and accessibility for all Americans. Do you remember the coalitions of disabled advocates, civil rights organizations, and the Democrat and Republican leadership that all worked together to bring you into existence thirty-five years ago? Fast forward to 2025, Congress just voted along party lines to stymie the American dream for 80 million including older people, veterans, people with disabilities, and families with children. Dreams are made more powerful when they are shared and have real opportunities to be actualized. For millions of disabled people, older people, poor and working class families in this country Medicaid, Medicare, CHIP, and SNAP are part of the inextricably entwined strands that uphold their dreams. 

I know firsthand the power that access to disability rights, safety net programs, and services can have on our ability to pursue dreams. My kindergarten teacher asked “what do you want to be when you grow up?” – and it dawned on me that there are many people who support my right to dream. During the initial years of the COVID-19 pandemic I was kept alive because of my access to Medicaid home-and-community-based services; in my earliest childhood years, growing up in a one-income household, SNAP put food on my family’s table. To this day, the longest career and income I have ever held is as an “unemployed” disabled person living on Social Security. But throughout my life, regardless of whether some considered me to be a Medicaid welfare queen, you still protected and ensured my civil rights as a disabled person. 

Access to these programs allowed me to pursue my own aspirations including serving as executive director of the Disability & Philanthropy Forum (DPF). I lead a team that mobilizes philanthropy to dismantle ableism, and in doing so can help ensure that generations of disabled people who come after us will continue to thrive. In contrast, when I consider the early-career opportunities I held, including roles in programs like AmeriCorps that are now at risk due to funding losses, it is disheartening that across the nonprofit landscape 20,000 jobs are vanishing due to federal budget cuts. Once considered the largest employer of people with disabilities, the federal government upheld a standard that 12% of each agency’s workforce are people with disabilities. That progress and model for inclusive workplaces is now all but lost. America has failed disabled communities in countless ways. Still, people with disabilities continue to insist on experiencing joy, and living up to the promise of inclusion and protections that you offer. It is unconscionable that this Republican majority in Congress shuttered so much for so many, all at the cost of an estimated $1 trillion in access to food and essential life-giving health care for vulnerable communities over the next decade.  

Barriers to Disabled Peoples’ Dreams Now and the Groups Still Leading the Way

Your 1990 mandate from Congress was to eliminate discrimination against people with disabilities. Now, this current Administration is testing that mandate every single day. I will briefly recap four areas that already will have long-term negative consequences for disabled people and for disability justice, rights, and inclusion.

1. Dismantling Diversity, Equity, Inclusion, and Accessibility (DEIA)

A vital practice of effective democracies is knowing your country’s history. In this case, only when we actively face our country’s legacy and ongoing practices of institutional racism can we live up to the ideals that we espouse. As you well know, ableism and racism are both forms of institutional discrimination that reinforce one another, and we cannot fully dismantle one without the other. This Administration has chosen to authorize directives to terminate efforts that protect marginalized groups, including disabled people, to obtain more equal opportunities. These include opportunities to work, receive funding, conduct research, and have equal access to make contributions that advance and bolster all of our public interests. While these Executive Orders were aimed at both the private and public sector, their reach is limited by the collective strength from you and our many longstanding civil rights, and constitutional laws. 

DEIA is about our shared belief in each other to create a more fair, representative, and equitable multiracial democratic society. Instilling this belief requires rigor, accountability, and integrity to be embedded into our systems and civil institutions; all work that is as essential like that of the Office of Civil Rights, which protects and enforces laws like you. Even while your protections exist, the harmful discrimination and destruction to disability communities has already taken hold. People with disabilities have shared experiences of job loss, and the fear of rollbacks on the social and economic gains for inclusion and workplace accommodations is real. Philanthropy can and should always be in solidarity with disabled people, but especially at this moment. One way to do so is to insist through their words, leadership, and funding on the expertise and leadership of people with disabilities as essential for the well-being of our future democracy. The philanthropic sector might consider borrowing a page from your historic passage. Foundations would come to understand that when coalitions of private, public, and disability-led movements come together around shared values our society can, among many things, change the narrative on disability from one that is about an individualized “problem” to the collective civic power that is gained by full inclusion for everyone. But I worry this lesson is not being learned at all by philanthropy, or learned fast enough. 

2. Restructuring the Department of Health and Human Services (HHS)

HHS administers programs that include Medicaid, Medicare, CHIP, SNAP, Older Americans Act programs, and Medicaid’s Long-Term Services and Supports (LTSS), among others. These programs deliver essential life-giving care to people across the lifespan. But rather than work towards a more truly inclusive country where more people have access to the support they need to live, some of our public leaders have chosen exclusion and in the case of some programs – opted to rollback on many of the gains that have been made. The fact is, cruel public policy decisions like gutting Medicaid LTSS and disrupting the jobs that public programs provide leave no space for political debate or budgetary justification. You and I know that part of the ingenuity of our public infrastructure is that whether a person currently identifies as disabled, or a person with a disability, there are civil rights and supports that exist so people who may experience temporary, permanent, or any aging-related challenges can access programs and live their best possible life. Public infrastructure, when they are inclusive, accessible, well resourced and upheld, can be in service of our collective well-being.

Still, few if anyone would characterize our country’s public health and healthcare system as “efficient.” But the proposals to disassemble agencies within HHS such as the Administration on Community Living (ACL), the Office of Civil Rights (OCR), Substance Abuse and Mental Health Services Administration (SAMHSA), and the National Institute on Aging (NIA) would only add to more chaos. The Trump Administration has directed multiple agencies across the federal government, including HHS, to forego the typical and formalized Congressional channels to implement sweeping changes. In the context of HHS, this has meant disruptions, uncertainty, and anxiety about how health and healthcare will be overseen, funded, and received for many people in this country.

Importantly, agencies such as the ACL and OCR ensure we have protections from health care discrimination, privacy and protection of our health information, and the right to access certain types of support and services. For instance, Olmstead was made possible by the 1999 Supreme Court ruling in Olmstead v. L.C. This decision adhered to your mandate to clarify that needlessly putting people with disabilities in segregated and institutional settings is unlawful, and determined that disabled people have the right to live in the community with the necessary supportive services. Without you as the first branch on our disability civil rights family tree, your younger cousin may not have been realized. Historically and even today, our country has many gross practices of eugenics including forced sterilization, and “experiments” on incarcerated people and developmentally disabled children. These civil rights protections uphold the principle of bodily autonomy, each one represents lives lost and rights that were fought for. It is the reason why still, disability rights and justice leaders are in principled struggle with trans people and trans disabled people who are fighting for the right to access trans-inclusive and affirming health care.  

Changes to HHS and its agencies not only ignore how these programs and services function, it also reveals the Administration’s lack of insight into who actually benefits from Medicare and Medicaid, how they support people in this country, and actually makes healthcare more affordable. I don’t believe that private philanthropy can or should replace the functions of HHS, (or any other primary function of government for that matter). But all philanthropic entities, no matter their area of funding priority or focus, can and should understand that access to health and healthcare is necessary for the social and economic well-being of a democratic society that is more fair, inclusive, representative, and can then be more effective. 

To be clear, disabled people are more than a compilation of “healthcare needs,” but access to programs like Medicaid, the right to live in the community, and other essential life-giving supports enable many to work and for some contribute to civil society as a certified literal genius. Philanthropy, as an essential influencer within civil society, has a responsibility to understand the barriers and gaps that support the health and well-being of people and movements that it funds. Going one step further, those Foundations that have expressed concern about the future livelihood and wellbeing of our democracy should support disabled leaders who have been working to expand healthcare access. 

3. Cutting Department of Education Funding and Segregating Disabled Students

Without you and the 1975 Individuals with Disabilities Education Act (IDEA), I would have had a far more isolating pre-K to high school experience. Instead, the classroom is where I learned some of my earliest advocacy skills and understood how to ensure that my needs would be met. These lifelong lessons may not be part of any standardized test requirements or even curriculums (and I regret that disability history was not part of my public school education but am grateful that it is now for some young people), still these skills remain indispensable to my success in navigating ableism as a disabled adult. Today, an estimated 15% of students in our country’s public schools are served by IDEA. Even with these longstanding civil rights to access a “free and appropriate public education”, too many students experience segregation, discrimination, and traumatic harm in public classrooms across the country. The facts are clear, underfunding the current system has been detrimental to students with disabilities and their families. 

The Trump Administration’s proposal to restructure IDEA and potentially dissolve its programs under the Department of HHS has already drawn the rebuke and ire of many members of Congress and disability advocates. I am outraged that some public leaders fear disabled people to the extent that they are choosing to condemn a generation of young people to a life of needless isolation, and one where they may never realize their fullest potential. Because how else can we possibly explain their decisions which are not based on public policy, the decades of existing civil rights laws, or belief in our own futures? They say that the government often moves too slowly; but when it comes to disabled students I say that the government has moved either too fast or not at all. I believe that when we allow fear to legislate our priorities, that is when we are moving the fastest towards our own demise. Instead, we should be centering people and families in public policies in order to maintain – and extend – the pace of a country that should be replete with thriving futures for the long term. 

Having access to large assets and/or endowments should not be a prerequisite to know that we could be doing more to support generations of disabled young people. Landscape analyses are not needed to have greater clarity on what the problems with public education for students with disabilities are because we have already been living this reality. And, it is only about to get worse. We should be listening to disabled young people and their families, and funding solutions in ways that embolden future advocates, and civic leaders. Philanthropy has an opportunity to put forth a more liberating and bolder future than it ever has through its investments in youth with disabilities. What if funders asked disabled youth what success looks like for them, and the kinds of future that they want to be part of? 

4. Perpetuating Harmful and False Rhetoric about People with Disabilities 

This is not the Trump Administration’s first or last time making a mockery of disabled people and spreading dangerous ableist stereotypes about people with disabilities. I refuse to draw more attention to these shameful comments and statements. 

I will instead focus on the clear case that this Administration makes for everyone about why all disabled people should have more access to language, telling our own stories, opportunities to share our lived-experiences, and be integral parts of mainstream culture, news, and media. Supporting these efforts can reverse those deeply ingrained biases and ableist attitudes towards disabled people in this country. This is an important element for the work of dismantling ableism because of the ways ableist biases can create structural barriers in public policies and programs that have harmful outcomes for disabled people. Examples of this include the institutional bias in Medicaid which currently makes it easier for someone to access nursing home care than obtain long-term services and support to rightfully live in the community. Another example of this is the oft-used phrase “high cost high needs patients” which is typically used to describe people who are deemed to have complex care needs and/or multiple disabilities. This dehumanizes people rather than focusing on ensuring the person receives dignified treatment and quality healthcare. It is for these reasons and others that whenever I begin a presentation about the work of our organization, or on disability justice, rights, and inclusion – I spend time addressing the importance of the language that is used to describe who we are talking about and why. Disabled people past and present have been fighting for the right to tell our own stories, and continue to fight against the ways ableist language is weaponized against our right to expressing ourselves. All of our public leaders who purport to represent all of us should necessarily take this responsibility seriously, and always seek out ways to uphold the best representations of our communities. It pains me to know that I even had to write that sentence, as if this should not already be a given expectation. 

Our current social culture is replete with numerous examples of ableist biases and representations of disability that are seeped in deficit framings. One only needs to turn on the t.v. and watch for some cringe plot or for another stand-up comedian to punch down at disability. These ways of depicting disabled people are not only false representations of how people with disabilities actually live their lives and view themselves, but also often lean on other tropes in an effort to normalize what is often patronizing and condescending behaviors towards disability. Beginning with the earliest days of our deinstitutionalization movement, disabled people have always demanded self-direction and complete autonomy over our bodies, where we live, how we are cared for, and what our futures look like. It is quite frankly the consistent rallying cry that ultimately led to your passage, and achieved all of our civil rights and movement’s triumphs since. These and others like it, are the stories that support our society’s cultural shifts towards understanding that ableism as the form of discrimination that requires all of us to dismantle because whether we identify as disabled – we all have a role in ableism.   

These are just four areas where the Trump Administration and its actions, including the most recent passage of H.R.1, has already set disabled people, older people, veterans, poor and working class families with children back. I believe that these four areas are key to the survival of our entire democratic society. Without education for disabled people we will not have an educated workforce, and generations of disabled young people will be ill-equipped to navigate society. Lack of access to health and our healthcare will needlessly relegate disabled people back into institutions rather than upholding our civil right to live in our communities. When people with disabilities are not reflected in our democratic institutions and values as part of a commitment to diversity, equity, and inclusion – our democratic practices will only be half fulfilled and incomplete. Finally, when disabled people cannot express our stories and ways of living to the fullest, the narratives that remain actively harm those our democracy should strive most to represent. But in spite of the magnitude that each of these setbacks and barriers threatens our disability-led movement and organizations, that constant chorus of “nothing about us, without us” still reverberates from the many disabled leaders and disability-led organizations continuing the work, thirty-five years on. 

Where Will Disability Justice Dreams Lead Us Next?

I wonder, what keeps you going thirty-five years later ADA? As inconceivable as it can sometimes seem at this moment, I find a deeper sense of purpose and solace in dreaming about what comes next for disability justice and disabled people. I am reminded that we have only gotten this far by the bold dreams of our disabled ancestors. Thirty-five years from now here is what I am dreaming for our country’s disabled communities, and what I hope my letter to you in 2060 will celebrate – 

1. Everyone in this country, regardless of socio-economic, immigration, disability, and any other status or identity – will have the means to age in a community and/or accessible home of their own choosing, and with the appropriate support they need to live. 

2. All people with disabilities, and especially disabled Black, queer and trans people of color, will have the right to and experience the full breadth of bodily autonomy across all areas of health and healthcare including reproductive health, physical, mental, and social well-being. 

3. Our society’s democratic practices will promote values that support all historically marginalized people to have the right to dream boldly for themselves, the communities that they belong, and for the future that they aspire to. 

We have a long way to go to realize these dreams, and that’s the point – we can and must continue onwards! I hope that you and I, along with all of our disabled friends, communities, and disability-led organizations, will make it through this next decade. I look forward to sharing stories of our advocacy and triumphs while we celebrate you – and all of us – in the future. But I already know that some will not survive to be part of what will certainly be the celebration of the century. I am saddened by the knowledge that many disabled advocates, leaders, and organizations will be forced to go before their time. To you and those still around, I give you my commitment to always support bolder risks and dreams that advance our collective disability justice priorities. 

You and I know the loss of hard-won progress will result in many older people, people with disabilities across the lifespan, and generations of disabled families who will never recover from these setbacks. This may especially be true for disabled trans communities, disabled people of color, disabled migrants and other marginalized communities who already experience multiple forms of intersecting oppression stemming from ableism. This is why the Disability & Philanthropy Forum remains steadfast in our mission to educate and spur the philanthropic sector to allocate more resources to support our movements to survive and thrive beyond this critical moment. Institutional and private philanthropy must do more even in the face of opposition and legal challenges. Disabled advocates and disability-led organizations cannot afford the privilege of retreat. 

So in honor of your 35th birthday, I’m offering thirty-five actions philanthropic organizations can take now. Each suggestion is an invitation to the question I will continue to ask my colleagues: What has your organization risked to dismantle ableism, fund disability-led organizations and support our bold dreams for disability justice futures? I look forward to sharing what I learn with you in next year’s letter. 

In community, 
Sandy Ho
Executive Director, Disability & Philanthropy Forum
July 10, 2025