Although New York State has a long history of advancing civil and human rights, Disabled New Yorkers remain second-class citizens in the Empire State where we can be paid less than minimum wage, denied services and locked away at the whim of an insurance company, and tortured at state-funded institutions. Our state claims to be a bastion of freedom, but it maintains its right to sovereign immunity in discrimination claims by Disabled New Yorkers and looks the other way while Disabled and elderly individuals are abused by agencies that receive state funding to provide daily assistance. Finally, in this ableist and discriminatory environment where insurance companies and the state deny Disabled New Yorkers their most fundamental rights, advocates for assisted suicide are advancing policies that would allow us to “choose death” while failing to recognize the inherent dangers of such policies. In our 2024 Budget and Legislative Priority Agenda, the Center for Disability Rights (CDR) calls on Governor Hochul and the New York State legislature to address these injustices in the 2024 state budget and legislative session. The following are some pressing issues currently being debated on the state level.
Reverse Eligibility Cuts to Home and Community-Based Services that Will Force Disabled New Yorkers into Institutions, S.328 (Rivera)/A.6346 (Paulin)
In 2020, the MRT II advocated for changes to the Medicaid eligibility for LTSS, increasing the number of activities of daily living (ADLs) needed for eligibility. This policy has both immediate and long-term consequences. First, these services were put in place as a cost-saving measure because NYS recognized that not providing them resulted in increased Medicaid spending because Disabled individuals – who lacked the support they needed – would ultimately require more costly long-term services and supports. Now, the state is cutting these services as a cost-saving measure. That just doesn’t make sense. Additionally, we believe these cuts will deny services to individuals who may become institutionalized, violating the Community First Choice Option provisions, which could result in the federal government demanding a substantial return of federal funds. CDR calls on the Hochul administration and legislature to reverse this harmful ableist policy.
Ensure Disabled New Yorkers Have a Viable Alternative to Institutionalization through Fair Pay for Home Care, S.3189 (May)
The Empire State perpetuates racist and ableist systems of oppression by underpaying its home care workers. It is well-documented that this system – whose workforce is predominantly BIPOC women – is a remnant of our country’s shameful history of slavery. By chronically underpaying this workforce, New York State oppresses these workers and perpetuates a workforce crisis that denies New Yorkers with disabilities the services they need to live in freedom. Because the 2021-22 budget allocated funds for increased wages without a requirement to increase rates, insurance companies diverted those funds, and the limited gains that were made have been largely swept away by skyrocketing inflation. CDR calls on the Hochul administration and legislature to increase home care wages and ensure that the funds are passed through insurance companies in pay increases instead of being used to improve their bottom line or fund their operations.
Begin the Process to Reverse Ableist State Policies that Prioritize the Interests of Insurance Companies over Disabled New Yorkers
In New York, managed care for long-term services and supports was implemented under an administration that was openly hostile to people with disabilities. Instead of ensuring that a rational process was applied to service authorizations, state policy created perverse incentives – formally acknowledged by the State during the Olmstead planning process – that denied or restricted services, forcing Disabled and elderly New Yorkers into institutions while at the same time driving up overall Medicaid spending. Additionally, the failure of these insurance companies to implement a person-centered planning process as required under the Community First Choice Option puts the state at risk of a massive clawback of federal funding. After more than 10 years, it is time for the State to assess and rethink this approach. If the Hochul Administration and Legislature are not prepared to act on this, as a starting point, they should then establish a workgroup to assess the impact of the state’s experiment in using insurance companies as the means to authorize long-term services and supports.
Stop State-Funded Torture of Disabled New Yorkers, S.900 (Brisport)/A.1166 (Epstein)
There is no question within the Disability community that “aversive conditioning” is torture. It has been banned within the borders of New York since 2005, however, a loophole in state law permits New York to send Disabled children and adults to the Judge Rotenberg Center in Massachusetts, where electrodes are attached to their bodies, and they can be shocked for even minor infractions. Under international law, such torturous practices may not be used on enemy combatants, and most New Yorkers would not do this to their dogs, but state policy allows this to be done to Disabled children and adults. Torture is not treatment. It’s time for the Hochul administration and Legislature to end the ableist state policy that allows this to be done to Disabled children and adults. Additionally, as a matter of principle, New York State should deny any payment to facilities that engage in such practices. New York cannot condone or support torture in any form.
Stop the Exploitation of New Yorkers with Disabilities by Giving Us Minimum Wage Protections, S.3434 (Skoufis)/A.4347 (Steck)
When minimum wage protections were established, Disabled Americans were excluded because of an ableist belief that we were fundamentally less productive. More than three-quarters of a century later, although society’s understanding of Disability has evolved, this ableist and discriminatory policy has not. Research has shown that Disabled workers may make pennies on the dollar, earning as low as 22 cents an hour. Furthermore, organizations paying their Disabled workers a subminimum wage are often subsidized by both federal and state governments. Sadly, even recent efforts to secure “One Fair Wage” have left behind Disabled New Yorkers. Provider agencies argue that they must pay us less than minimum wage to be competitive, but that myth has been busted.The Hochul administration and Legislature must stand up against pressure from SEIU and providers that perpetuate this unjust practice and – instead – join the 14 other states that prevent Disabled individuals from being paid less than minimum wage.
Restore Protections afforded to Disabled State Employees under the ADA, S.1164A (Sanders)/A.6541 (Kelles)
In Board of Trustees v. Garrett, the US Supreme Court ruled that Congress, in passing the Americans with Disabilities Act, exceeded its power to authorize resident lawsuits against their states under the 11th Amendment. Additional cases undermined the rights of state workers under other federal laws. These rulings effectively took away the protection for state employees while upholding the same protection for privately employed individuals. This created a double standard inconsistent with our state’s values. Such a policy is out of step with the Hochul administration’s efforts for New York State to be a model employer of people with disabilities. The Hochul administration and the Legislature must work together to correct this unjust disparity and waive the State’s right to sovereign immunity rather than perpetuate this discriminatory double standard.
Protect All Disabled New Yorkers from Abuse and Neglect
During the last year, CDR has advocated on behalf of a quadriplegic woman in Rochester who found herself without services when the University of Rochester Medical Home Care (URMHC) precipitously withdrew all of her services. URMHC argued that it could not raise the wage to hire workers even while it promoted itself with a national Super Bowl commercial. URMHC nurses eventually agreed to perform her “skilled” tasks. They would assist her in emptying her bowels while she was in bed but would not remove the feces. They repeatedly left her alone in feces – at times exceeding nine hours – while she waited for aides to arrive at her home and clean her. Although she won her fair hearing, URMHC failed to comply with the order and restore the services as they had previously been provided. Repeated pleas to the New York State Department of Health seeking their intervention changed nothing. Something needs to be done to address the fact that these agencies are allowed to act negligently with total impunity.
The Justice Center for the Protection of People with Special Needs was established in 2013 by the Protection of People with Special Needs Act. The agency was created to restore public trust in the institutions and individuals charged with caring for vulnerable populations by protecting the health, safety, and dignity of all people with special needs. Despite the widespread reach of the Justice Center, there are still areas the Center does not have jurisdiction over. CDR has urged that the scope of the Justice Center be expanded to protect people in nursing facilities or using traditional home care services. We recognize that advocates feel the Justice Center has been less than effective, so we call on Governor Hochul and the legislature to work with CDR and other advocates to take the steps needed to protect Disabled and elderly individuals from neglect and abuse.
Give Disabled New Yorkers Life with Liberty, NOT Death
Disability rights organizations nationwide agree: Physician-assisted suicide substantially threatens Disabled individuals. This is particularly true for those of us from BIPOC communities who face disparities in healthcare and long-term services and supports. Advocates for assisted suicide use an oversimplified argument that it would prevent people from living in pain at the end of their lives, but the vast majority of people seek assisted suicide because they fear losing autonomy, including their ability to toilet independently. In short, they fear becoming Disabled. This argument was acknowledged by Derek Humphreys, who founded the Hemlock Society (now rebranded as Compassion and Choices) when he made the case that seniors and Disabled individuals would rather die than go into a nursing facility and should be given what they want – assisted suicide. Sadly, given the attacks on home and community-based services and the systemically ableist policies in our state that dehumanize and disenfranchise Disabled New Yorkers, such fears are not entirely unwarranted. However, instead of advancing our right to die, New York should embrace our right – as Disabled New Yorkers – to live freely and with dignity.The Hochul administration and Legislature must heed the concerns raised by the Disability Community and keep assisted suicide illegal in New York.
Invest in the State’s only Network of Disability-Led Organizations
There is only one statewide network of Disability-led organizations – Independent Living Centers – and that network has continuously been woefully underfunded. These Centers provide critically important services for people with disabilities that allow us to be integrated into society and live independently in the community. Services offered by these Centers are provided by people with disabilities themselves.
Instead of investing in organizations run BY the Disability Community, New York State continues to pump funding into organizations run by non-Disabled people while underfunding Disability-led organizations. State policies replaced Disability-led organizations, which created programs like the Consumer Directed Personal Assistance Program, with organizations – including for-profits – run by non-Disabled people.
It’s time to seriously question that. If the State channeled funds into organizations run by white people to serve BIPOC communities, it would immediately be understood as systemically – if not overtly – racist. If the State did this to ANY other marginalized community, it would be immediately recognized as problematic.
Why does the state perpetuate such an imbalance in funding for people with disabilities? ABLEISM.It is time for the Hochul administration and legislature to recognize and address this ableist bias in funding and take steps to start addressing it by providing adequate base-level funding to the network.
As CDR ramps up our efforts to advocate on matters impacting Disabled New Yorkers, we hope we can count on your support and voices to let the Governor and Legislature know how important these issues are. Do not forget to check back for the latest updates on our advocacy efforts, and please do not hesitate to reach out if you are interested in joining your fellow community members in making your voice heard.If you are interested, sign up for our quarterly newsletter and add your name to our advocacy contact list.