On June 12, 2024, the Most Integrated Setting Coordinating Council (MISCC) held its June meeting. The Council is responsible for overseeing the implementation of the state’s Olmstead Plan, which outlines New York’s obligation to provide services to individuals with disabilities in the most integrated setting appropriate to their needs. The Olmstead Decision represented a critical moment in the fight for Disabled freedom and equality under the law, and on this Juneteenth – a day that commemorates the emancipation of enslaved African Americans and the generations-long struggle for liberation – we recognize and honor our connected fights for freedom across multiple marginalized communities.

CDR’s CEO & President, Bruce Darling, addressed the Council to speak on the importance of the connected fights for freedom across multiple marginalized groups and to acknowledge the significance of Juneteenth in the collective fight against oppression:

In June, LGBTQ+ people celebrate pride, but the month is also about freedom. On Juneteenth, we will commemorate the historic day when the last of enslaved African Americans learned that they were free. Juneteenth is a time to acknowledge the atrocities of slavery and the ongoing fight for freedom, equality, equity, and justice. It is also a reminder that we need to continue the work of deconstructing racism which has been built into the structure of American society.

Days later, we will celebrate the 25th anniversary of the Supreme Court’s Olmstead decision – a decision that (although imperfect) affirmed the right of Disabled individuals to live in freedom. That decision underpins the focus of this Council, and as council members, it is critical that we recognize the anniversary and work that lies in front of us.

It is fitting that Juneteenth and the Olmstead decision anniversary are so close to each other because the lives of Black, Brown, and Disabled people – and our oppression – are intrinsically tied together. We cannot escape the reality that the current conditions in the home care system have their roots in slavery or that the cost of our marginalization is quantified in deaths. We saw that most clearly during the COVID-19 pandemic. Although public health officials and pundits saw twin outbreaks of COVID in communities of color and institutions, those of us on the front lines saw one connected outbreak. As COVID raged through the nursing facilities, Disabled individuals were infected and died in unprecedented numbers. As a reminder, COVID killed one of every seven nursing facility residents in our state.

Disabled individuals were not the only ones infected in these facilities. The direct service workers – primarily Black and Brown women – were also infected. They brought the virus home. COVID then spread rampantly through communities of color where structural racism had established conditions for a perfect storm. As the virus spread among people of color, it found its way back into other nursing facilities through other workers where the cycle continued and compounded.

During the pandemic, researchers confirmed what Disabled people already knew. Institutionalization – and the structures of ableist oppression that underpin it – kill us. We are in a fight for our lives. Institutionalized individuals were 10 times more likely to be infected than their community-based peers. Once infected, people were equally likely to die. CDR tried to get institutionalized people into safe harbor, but were blocked at every turn.

The Latonya Reeves Freedom Act logo

This underscored another fact of our Disabled lives: life and liberty aren’t guaranteed to us as Disabled people. Instead of having a right underpinned by the US Constitution, states hold the keys to our freedom. In 1991, Latonya Reeves – a Black woman with significant disabilities who had been institutionalized as a child – was once again facing the reality that she would be forced into a facility. The state of Tennessee simply would not provide her with the services and supports she needed to live in freedom. Deborah Cunningham, a queer woman with a very significant disability who was the Executive Director of the Memphis Center for Independent Living, helped arrange for Latonya to leave Tennessee. Latonya made the first trek from Memphis to Denver, Colorado. There, the Reverend Wade Blank – who marched with and was inspired by the Reverend Martin Luther King, Jr. – had established a group, the Atlantis Community, that took in Latonya. With her freedom secured, Latonya fearlessly led the way for other Disabled individuals to follow her from Tennessee to freedom in Colorado.

There is no question that Disabled activists looked to history for inspiration. The trip Latonya made – and helped others make – was originally called the Disability Underground Railroad. Today, we refer to it as the Disability Road to Freedom.

Latonya worked to support those who moved to Colorado to find freedom while helping support in-state transitions back into the community. She also fought for Disability Freedom, putting her body on the line and being repeatedly arrested in acts of civil disobedience.

Legislation that would finally ensure that Disabled individuals are able to live in freedom – the Latonya Reeves Freedom Act – has been introduced in Congress. With a bipartisan majority of House members on the bill (HR 2708), advocates are now working to secure a hearing.

Unfortunately, Democratic leadership in the House are not cosponsoring the bill because Disability Freedom – unlike other social justice causes – is not yet part of Democratic canon. Governor Hochul can help address this by issuing a statement in support of the legislation on the 25th anniversary of the Olmstead decision.

Although we have made progress, the fight for Disability Freedom has yet to be won. Even in New York.

Almost two years ago, University of Rochester Medical Home Care precipitously withdrew services from a quadriplegic woman. CDR worked with her to restore the certified home health care services that were illegally terminated, and we filed for a fair hearing. We were thrilled when she prevailed at the fair hearing, but URMHC refused to comply with the decision and restore the services she once had. Even though the agency knew she had cats and she wanted female aides, the agency “offered” aides who were allergic to cats and/or male. They also “offered” her assistance only five days a week and at times that were inconsistent with her needs, essentially only offering aide service during standard business hours. For those unfamiliar with spinal cord injury, an individual continues to be paralyzed without regard to the clock or calendar. They don’t get evenings, weekends or holidays off. The home care agency understood that the services they offered this woman would not meet her needs. Even so, when she filed a Request for Compliance with OTDA, the state provided URMHC with a Certificate of Compliance.

This woman has continued to go without needed assistance. She had never had a pressure sore or been hospitalized since her spinal cord injury in 1984, but because of New York’s failure to address the issue with her home care services, she got a pressure sore. The continued failure to meet her needs has resulted in her wound getting infected. She is now hospitalized and receiving medical care for an entirely avoidable bone infection. It is clear that, today, the fight for Disability Freedom is no less perilous than it was when Latonya made the trip to Denver.

Although this woman has been adamant that she wants her services restored, advocates and policy makers alike have urged that she consider using Consumer Directed Personal Assistance.

Disability activists protesting to save CDPAS with a banner that says “Our Lives, Our Program, Our Future.”

During the state budget, the CDPAS program, developed by the Disability Community to give Disabled people a modicum of control over their lives, was under attack for its unprecedented growth. State budget proposals were put forward that would take the program away from those that created it and hand it over to a corporation. We were assured that the disability-led organizations – and the Disabled individuals we employ – would continue to have a role in the new system. We could continue working as we had. The only difference would be that we would be doing this under the auspices of a large national corporation – run by nondisabled people. Instead of allowing the Disabled Community to leverage these resources to lift ourselves up, our organizations would be reduced to the modern, nonprofit equivalent of sharecropping.

Although we still have significant concerns about the proposal as enacted by the Legislature and Governor, I – and others – are grateful that Independent Living Centers will continue as full fiscal intermediaries in the system moving forward. CDR has published a paper on this topic, but we implore the Hochul administration and Department of Health to work with us – and the other ILCs – to operationalize a plan that centers the voice of Disability-led organizations in the redesign of the systems at the heart of our freedom.

It is also critical this Council recognize that the growth in CDPAS is not entirely due to bad actors or the infusion of the opportunity to make massive amounts of money by enrolling people in managed care. Those are indeed significant factors in the program’s growth, but the expansion of Medicaid eligibility has also played a role, as has the reality that New York’s home care system is fundamentally broken. When agencies – like University of Rochester Medical Home Care – push away consumers, most don’t fight back. We need to consider how many other people like the woman currently hospitalized with a bone infection – who would never have considered CDPAS – have been pushed into that system because traditional home care has failed them. That is a critical issue this Council needs to address.

In the heat of the state budget process – which centers money – it is easy to forget that we are dealing with issues of life, death and freedom. Throughout the budget process, this woman grounded CDR in that truth.

As we approach Juneteenth and the 25th anniversary of the Olmstead decision, it is time to recommit to uplifting the Disability Community and communities of color. I look forward to the day when the last Disabled individual in American society has been given a real opportunity to live in freedom. I know the work doesn’t end on that day and recognize that it is a day I won’t live to see, but with the time we have together we can do everything we can to finally free our people. Thank you.