The Center for Disability Rights had high expectations for Governor Hochul’s first State of the State address, and although we appreciate commitments she made during her address, we were deeply disappointed that her inspirational speech didn’t once mention New Yorkers with Disabilities. We are not assuming any bad intent and understand that she and her team need to be educated on the Disability Community and disability issues, but this is a significant failure nonetheless.
Say the Word and Acknowledge the Community
In her 5,268 word spoken address, Governor Hochul did not once say “disability” or any variation of that word. Not once. She and her team did a great job acknowledging virtually every corner and community in our state, except disability. That made the omission even more problematic.
Governor Hochul’s State of the State referenced many topics important to the Disability community. Each time, advocates waited, anticipated and hoped to hear some acknowledgement from the Governor. Sadly, that did not happen even though there were a number of points in her speech that offered her perfect opportunities to do this.
• Our entire state – and the world – watched as elderly and Disabled New Yorkers in nursing facilities died in unprecedented numbers with their bodies filling morgues, sheds and rental trucks sitting on the street. While our former Governor minimized these deaths, he also ignored recommendations repeatedly offered by disability rights advocates to give these individuals an opportunity to protect themselves by leaving the facilities riddled with COVID-19. Governor Hochul could have acknowledged this collective trauma and highlighted that her administration would be different. Instead, she said nothing.
• Governor Hochul spoke about the portrait of Franklin Roosevelt that hangs above the mantle in the Governor’s residence and how it reminds her daily of what leadership during a crisis is all about. She described how FDR rebuilt the economy after the crash of ’29, highlighting that – more than giving people jobs – he gave people hope. In as few as three words she could have acknowledged FDR’s disability – and in doing so would have acknowledged the entire Disability community. Instead, she said nothing and in doing that – like FDR himself – she perpetuated the ableist mythology that erased his disability.
• When Governor Hochul spoke about New York being recognized as the birthplace of movements for equality and progress, she included “the labor movement, the women’s rights movement, the LGBTQ+ movement, the environmental movement, and the racial justice movement”, but not the Disability Rights movement even though New York has a rich history of Disability Rights, with Camp Jened in the Catskills and Disabled In Action being founded in New York City. It is also important to point out that – in 1966 – Disabled activists in Rochester held the city’s first disability rights protest and picketed at Rochester’s War Memorial to urge Governor Rockefeller to make the State’s SUNY campuses accessible. Instead of acknowledging the history of the Disability Rights Movement in New York, she said nothing.
As the Governor ended her remarks, she declared that it is time for a new American Dream, a better, fairer, more inclusive version that she called The New York Dream. In failing to mention people with disabilities in her address, she inadvertently made her vision seem unfair and less inclusive from a disability perspective. We recognize that structural ableism has prevented people with disabilities – with very limited exceptions – from key roles in state government. There is a vast wealth of knowledge about Disability culture and history in our state’s extensive network of disability-led organizations. Moving forward, we urge the Governor and her team to use this network to educate themselves.
Reinstate the Office of the Advocate for People with Disabilities
It is likely that the Governor’s team didn’t recognize the failure to include people with disabilities in the spoken address because we aren’t represented in her administration or the structure of state government. We very much appreciate the commitment the Governor made in the State of the State book and a subsequent press release that confirmed she would be addressing this issue and injustice.
The Governor has proposed creating the Office of the Chief Disability Officer which appears to be an alternative to the legislation (A.3130/S.1836) – approved unanimously by the legislature and awaiting her signature – that would reestablish the Office of the Advocate for People with Disabilities. Disability Rights advocates – from disability-led organizations – have been exceptionally clear with Governor Hochul’s administration that the Chief Disability Officer (CDO) framework – proposed by Governor Cuomo when he vetoed similar legislation – was perceived as a token position intended to provide political cover for the veto. We have also been clear that we want permanent representation in state government which is why we have urged the Governor to sign A.3130/S.1836 even if it needs chapter amendments. Although one could argue “it is only a name and a title,” we don’t understand why the Governor would choose to continue using language – developed by one of the most ableist Governor’s in our state’s history – which was linked to his veto of our bill. That’s concerning.
Advocates are even more concerned that State of the State framed the office as being focused on employment of people with disabilities. We appreciate the Governor’s team addressing these concerns and clarifying that the Office will have broader reach in a subsequent press release. We remain concerned, however, that the significant emphasis on employment means the administration may have entirely missed the point of establishing the Office.
Although employment is an important issue, we already have multiple state agencies devoted solely to advancing the employment of people with disabilities, and there are other significant issues that are entirely unaddressed by the structure and substance of state government, most notably, community living and compliance with the Americans with Disabilities Act.
• There is no state office responsible for ensuring that state agencies comply with the Americans with Disabilities Act. This point was made painfully clear when the former Governor refused to utilize an American Sign Language (ASL) interpreter during his daily COVID-19 press events. Advocates needed to sue the state to secure access.
• There is no state office responsible for advising state agencies on Disability issues. During the pandemic, advocates were shut down – instead of engaged – whenever they tried to offer proposals that would have saved Disabled lives, including efforts to provide alternatives to dying in an institution or nursing facility and promote the vaccination of New Yorkers with disabilities. In fact, the state has failed to respond to a letter we sent in April 2020 about this – despite repeated efforts.
• There is no state office responsible for advancing policy to ensure that elderly and Disabled New Yorkers are able to live in the community. Advocates have tried to address the failure of the Most Integrated Setting Coordinating Council to advance its mission or even comply with the state law that established the Council. Although the Council has established committees, they have not been effective because some state agency representatives – notably the New York State Department of Health – stonewall any progress instead of working with advocates fighting to give Disabled New Yorkers an opportunity to live in freedom.
Advocates have also been ignored in planning how to use the funding from the American Rescue Plan Act (ARPA). We urged the state to use those funds to improve the lives of the people who provide our personal assistance services and help us keep the services we need to meet our daily needs. Over the objections of advocates, the state chose to direct the funds to managed care companies and other projects, including worker retention in nursing facilities, instead of raising wages or providing payments to our community based workers whom the funds were intended to help.
We understand that this is context the current administration has lacked as they made decisions about the lives and future of Disabled New Yorkers. The Governor is doing a good job in transforming state government to be more inclusive, but she needs to recognize that state government has been toxic to people with disabilities – particularly her predecessor’s administration. Before her administration makes decisions “about us WITHOUT us” in regard to the Office of the Advocate for People with Disabilities, the Governor herself needs to meet directly with us. If she does, we know she will sign legislation establishing this office. If she doesn’t, she risks perpetuating the toxic and ableist culture of her predecessor’s administration – even if she has the best of intentions.
Fair Pay for Home Care
CDR applauds Governor Hochul’s commitment to raising wages for the healthcare workforce based on the assumption that this includes wage increases for personal assistants in the Consumer Directed Personal Assistance Program and personal care workers. The people who provide Disabled individuals with the direct assistance to keep us out of institutions – for us – are indeed the heroes of the pandemic and our everyday lives.
This commitment is critical because our state has a self-inflicted workforce shortage that is endangering the lives and stealing the freedom of Disabled and elderly New Yorkers. Although they were underpaid at the time, our personal assistants used to be paid 125% of minimum wage. After more than a decade of New York State balancing its budget on the backs of people with disabilities and our workers who are primarily BIPOC, they now make minimum wage. Based on today’s minimum wage, they make $3 per hour less than they did under the Pataki Administration. And that doesn’t account for inflation!
More insulting, although they may perform an essential healthcare service and complex medical tasks while being lauded as heroes, they are only paid 88% of the state minimum wage for fast food workers. Because the NYS Department of Health refused to use ARPA funds to increase wages or provide retention bonuses for consumer directed personal assistants, it is critical that Governor Hochul make clear that she is committed to raising the wages and providing retention bonuses for our CDPAS personal assistants and home care workers.
Investments in Other Home and Community Based Services
Being able to choose where to live and how to receive needed supports, and by whom, should be recognized as a basic human right for all New Yorkers. As we enter the third year of the pandemic, we call on Governor Hochul to work with the Disability community to re-imagine long term services and supports in ways that replace facilities with community-based services to the greatest extent possible.
CDR supports Governor Hochul’s proposal to expand the Joseph P. Dwyer Peer-to-Peer Veterans’ Support Program, which supports veterans who are transitioning from military service to civilian life and facing challenges related to PTSD, TBI and depression. CDR calls on Governor Hochul to educate herself about successful peer based models in other systems and expand access to those services as well.
Affordable, Accessible and Integrated Housing
Freedom from an institution is impossible without access to affordable, accessible and integrated housing. Today, the lack of affordable, accessible, and integrated housing is one of most significant barriers preventing people from living in the community.
CDR supports Governor Hochul’s proposal to create affordable and permanent housing units for seniors who might otherwise need to reside in a nursing facility or other institutional setting, but calls on Governor Hochul to expand her proposal and include all New Yorkers at risk of institutionalization. The current patchwork of programs makes the system needlessly complex and allows people to fall through the cracks into unwanted institutionalization. We also caution the Governor that linking the provision services to housing – although popular with provider agencies – limits the control people can have over their lives and services. This sometimes also puts people’s freedom at risk because service providers use the power to evict individuals from their housing when there is a dispute over their services. The Hochul administration needs to engage with Disability Rights advocates to understand the different perspectives held by people and providers, particularly as it is related to service-connected housing.
Planning for Community Integration
While we support the intent of Governor Hochul’s proposed Executive Order to implement a State Master Plan for Aging, CDR does not understand how this is different from or interacts with the state’s Most Integrated Setting Coordinating Council. The Master Plan is intended to “address challenges related to communication, coordination, caregiving, long-term financing, and innovative care models – all furthering the ability for more New Yorkers to age with dignity and independence” while the MISCC is responsible for “ensuring that New Yorkers of all ages with physical, intellectual, developmental, and mental disabilities receive care and services in the most integrated settings appropriate to their individual needs.” The legislation authorizing the MISCC identifies many of the same issues that are proposed for the Executive Order.
Because the services for people with physical disabilities overlap significantly with services that support older individuals in their homes, CDR is concerned that multiple planning processes will dilute and undermine the work we are all trying to accomplish. Additionally, the needs of younger Disabled people are a good indicator of what the needs of future older individuals will be. Having Disabled advocates at the table can help inform the planning process for the future elders in our state, instead of assuming the next generation wants exactly what the last one did. We are also concerned that advancing this proposal may indicate that the Governor and her team are not fully aware of the MISCC and the important role it is supposed to play. The Hochul administration needs to work with Disability Rights advocates and understand the interaction between the MISCC and the State Master Plan before she takes formal action.
Expanding Medicaid Eligibility for Disabled and Elderly New Yorkers
CDR applauds Governor Hochul for expanding Medicaid eligibility for Disabled and Elderly New Yorkers. This coverage expansion will raise the income level to 138% of the federal poverty level. This will reduce health disparities across the state, reduce unnecessary eligibility redeterminations and increase administrative efficiencies.
Investments in Nursing Facilities Must Be Matched with Investments in Transition
CDR is committed to ensuring that all people with disabilities – of any age and with any disability – have the civil right to access community-based services. COVID-19 has killed more than 15,000 Disabled and elderly New Yorkers. Research during the pandemic demonstrated that individuals in nursing facilities were 11 times more likely to die from COVID than their peers receiving community services – even though they had similar levels of acuity. We are concerned that – without a clearly articulated plan to promote community integration – New York State will by default prioritize institutional settings over community living, investing in a system that stole Disabled lives. CDR calls on Governor Hochul in her first Budget to make equal investments in transition services as she invests in improving nursing facilities.
Specifically, we urge the Governor increase funding to programs such as the Open Doors Transition Center and Olmstead Housing Subsidy Program that help people transition from institutional settings to community-based living and have a track record of success. Again, we urge Governor Hochul to include members of the Disability community in her five-year plan to increase affordable housing for New Yorkers.
Voting is nearly as fundamental as freedom for Americans. CDR supports Governor Hochul’s proposal to combat voter suppression by advancing legislation establishing a state-level voting rights act. We applaud her leadership.
We are also grateful for Governor Hochul’s commitments to fight for climate justice and promote racial equity. There can be no Disability Justice without addressing these critical issues. Governor Hochul rightfully celebrates that “the days of three men in a room are clearly over.” For that, the Governor deserves an ovation – standing or not as the case may be. She needs to hear that we are incredibly proud of her for smashing through the glass ceiling of state government.
Although her first State of the State would have been the perfect opportunity to demonstrate to the Disability Community how her administration will be different from her immediate predecessor’s administration, the year has only begun. She has made some significant commitments, and there is also incredible potential in her administration, but there is much work to address the pervasive ableism embedded in state government.
The best way to accomplish that is to engage directly with Disability Rights advocates and Disability-led organizations. We look forward to partnering with her.
About the Center for Disability Rights
The Center for Disability Rights, Inc. (CDR) is a non-profit service and advocacy organization devoted to the full integration, independence and civil rights of people of all ages with all types of disabilities. With services throughout New York State and offices in Rochester, Corning, Geneva and Albany, CDR represents the concerns of thousands of people with disabilities.
January 6, 2022