Systemic Reform

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Center for Disability Rights calls for systemic reforms after assisting local Disabled woman in securing home care services that were illegally terminated by University of Rochester Medical Home Care

Now that a fair hearing has affirmed that the Center for Disability Rights was correct in asserting that University of Rochester Medical Home Care (URMHC) illegally terminated the home care services of Teresa Carroll, it is time to revisit CDR’s original call to action for systemic reform.

On December 1, 2022, CDR’s President and CEO sent an email to the NYS Department of Health, Monroe County, the CEO of URMHC, the board of URMHC, and University of Rochester President Sarah Manglesdorf. After asking all parties to address Ms. Carroll’s individual situation, CDR urged the email recipients to ensure that CDR’s systemic concerns are also being addressed.

At that time, CDR’s President wrote:


CDR is addressing our concerns to the home care agency’s board because UR Home Care’s CEO has been personally involved in actions by the agency which inappropriately and illegally terminated services, putting this Disabled woman’s health and freedom at risk. CDR recognizes that a significant number of board members work for the University Medical Center and affiliated organizations. We are concerned that these board members may feel obligated to defend the actions of the agency due to such affiliations. Consequently, we urge the full board to empower the “independent” community-based board members to take the lead in addressing the issues we are raising.

It is our understanding that the New York State Department of Health issued a finding of immediate jeopardy in this case, fined UR Home Care, and instructed UR Home Care to reinstate services after the agency precipitously withdrew services and left the individual without the assistance for critically important aspects of her daily routine. She was forced to rely on volunteers to provide assistance with her basic needs, and went without receiving some services altogether, including assistance she needed to empty her bowels. “Reinstating” the “skilled” services has appeared to be – at best – an effort to minimally comply, and as we understand it, in at least one case, this woman was left unattended for hours after the nurse changed her Foley catheter, inserted a suppository, and left.

We are calling on the UR Home Care Board to:

  • Immediately ensure that this woman has the services that had been provided to her by UR Home Care restored so that her life can return to some sense of order and stability.
  • Meet with the individual and advocates to understand the significant and serious impact that withdrawing services in this matter has on individuals with significant disabilities.
  • Require the UR Home Care CEO to personally apologize to this individual, and take steps to make amends for the stress and emotional distress that the home care agency’s actions caused to her.
  • Initiate an independent review of the discharges over the last six months to determine whether other individuals had their services terminated inappropriately and/or illegally. CDR believes that independent review is warranted because the home care agency’s management assured everyone that the matter was addressed when, in fact, we knew – or should have known – that it was not. Should other individuals be identified, UR Home Care should take steps to address those inappropriate service terminations. Alternatively, should other individuals not be identified in the process, the organization should identify and address the reason this woman – a longtime consumer of the agency may have been targeted.
  • Establish policies and systems to ensure that inappropriate service reductions or terminations do not happen again, including Board level reporting and review.
  • Ensure that the home care agency has a fully functional quality assurance committee with community representation – including representation by consumers of the services and community advocates – which is able to identify issues like this and recommend improvements to the Board.
  • Receive training alongside the home care agency’s senior staff from disability-led organizations on:
    • differences between long term services and supports and post-acute home care services;
    • how ableism impacts the delivery of community-based services for people with disabilities;
    • the regulations related to service termination or reduction in services, including the Catanzano regulations which the organization blatantly violated; and
    • the impact that unwanted institutionalization and the threat of institutionalization – either direct or implied – have on people with disabilities.
  • Identify whether systemic pressures outside of the organization – regulatory requirements and such – were underlying factors in this situation, and if such pressures are identified direct senior staff to work with CDR to identify systemic solutions – inside and outside the organization – to address them.
  • Recognize that this is an opportunity to better engage the Disability Community and explore how UR Home Care – as well as URMC – can work with CDR in diverting and transitioning people with disabilities from nursing facilities and other institutions.


UR Home Care is part of the medical center and university which is led by President Sarah C. Mangelsdorf. The university, under President Mangelsdorf’s leadership, has highlighted its commitment to diversity, equity and inclusion. In fact, the University of Rochester has established an office – the Institutional Office of Equity and Inclusion – “dedicated to cultivating an equitable, respectful, and welcoming culture at the University of Rochester”. Frankly, the actions of the UR Home Care are entirely inconsistent with the aspirations and values espoused on the University’s website.

In her email responding to calls and correspondence from CDR, the University’s President framed this as a concern about a “patient’s care needs”. In framing this as a healthcare or patient care issue, President Mangelsdorf failed to recognize the fact that, for the Disability community, Disability Freedom is a fundamental civil rights issue and the Long Term Services and Supports used by a person with a disability are the foundation for their freedom. We consider unwanted institutionalization a violation of our fundamental civil and human rights. Our concerns were amplified during the pandemic when 1 in 10 nursing facility residents in NYS died from COVID-19.

Precipitously terminating such services – with full knowledge that no other services were in place – has the clear potential to drive an individual into an institution. Consequently, it is incomprehensible to us that any organization “dedicated to cultivating an equitable, respectful, and welcoming culture” would act in a manner that not only pushes Disabled people out of the organization, but out of free society.

President Mangelsdorf was also fully aware that the Disabled individual involved graduated from the University of Rochester. While we think the actions of the Home Care agency are ableist and that no Disabled person should be forced into an institution, the fact that this was knowingly done to an alumnus of the University adds insult to injury.

To put this in a broader context, in the 2017 report “Understanding Diversity at the University of Rochester”, of the 12,080 University of Rochester faculty, staff, trainees, and students who completed the survey, representing an overall response rate of 48%, only 444 individuals self-identified as people with disabilities. First, the number of respondents with disabilities is extremely low (3.7%). Second, “responses from individuals who identified as having a disability showed a significantly lower perception of the University’s inclusiveness than those without disabilities in all of the factors and among almost all of the groups (faculty, trainees, staff, and students).” These findings are not surprising given the rather dismissive – and frankly ableist – nature of the President Mangelsdorf’s response to this situation.

We are calling on President Mangelsdorf to meet with the individual and advocates involved in this situation to:

  • Develop an understanding of people with disabilities – not as “patients” – but as an oppressed and disenfranchised community who is struggling to secure their civil and human rights;
  • Identify how the University can refine its baseline data regarding participation of different groups of people with disabilities in various roles within the UR Community (faculty, staff, and students).
  • Identify ways to more effectively incorporate disability into the university’s efforts to promote diversity, equity and inclusion – including efforts within the School of Medicine and URMC – and address ableism in the University Community; and
  • Explore ways the University can strengthen its connection to the Center for Disability Rights and the local Disability Community.


Because this individual utilizes Medicaid services, both Monroe County and the State of New York play important roles in addressing this matter. Monroe County is charged under the regulations with making an independent determination about terminating services when a Certified Home Health Agency (CHHA) wants to terminate services due to health and safety concerns while there is a doctor’s order in place and no other CHHA is willing to serve the individual. That never happened. Additionally, the CHHA is required to notify the County and continue providing services during this review. That did not happen. Finally, when the situation was brought to Monroe County’s attention, it appears the County did not follow the established procedure or inform the CHHA that they failed to follow the law and require UR Home Care to continue providing services. Monroe County should be fully aware of these regulatory provisions because the lawsuit that established them, in the first place, was initiated because of a case in this county. Although the state has stepped in, UR Home Care has not maintained (or restored) the Home Health Aide services that it provided and inappropriately terminated.

We call on Monroe County to:

  • Require each of the other local CHHAs to provide documentation as to the reasoning behind their refusal to serve this individual with immediate and urgent need of services, addressing CDR’s concern that these agencies “blackball” consumers;
  • Send a communication to all Certified Home Health Agencies in the county reminding them that it is illegal to reduce or terminate CHHA services authorized by doctor without a doctor’s order and reminding them that if they become aware of a consumer who has had their services withdrawn by a CHHA, that they must formally notify the County so it can ensure the individual’s rights are not violated; and
  • Work with CDR to establish a procedure to address non-compliance by local CHHAs with procedures which needed to be established through litigation.

The New York State Department of Health also needs to take action. It should:

  • Send a General Information System message to all counties reaffirming their responsibilities under the Revised Catanzano Implementation Plan, including guidance on how to handle a situation when a county becomes aware of a CHHA’s noncompliance;
  • Send a Dear Administrator Letter to all Certified Home Health Agencies reminding them of the regulations related to service recipient discharges and reductions in services as well as their responsibilities under the Revised Catanzano Implementation Plan;
  • Strengthen its home care survey process to ensure that terminations and reductions in CHHA services are carefully reviewed to identify individuals whose rights may have been violated;
  • Strengthen the surveillance program to ensure that all complaints concerning the loss of home care services are always prioritized as needing immediate investigation; and
  • Develop a reporting process that regularly provides relevant data about this and related issues to the Most Integrated Setting Coordinating Council.


Ten years ago – after concerns about abuse and neglect were raised – New York State established the NYS Justice Center for the Protection of People with Special Needs. 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.

Although the Justice Center has jurisdiction over more than 1,000,000 individuals receiving services across six State Oversight Agencies, even though she was left alone lying in feces for hours at a time, Teresa Carroll is not one of them. Teresa and others who received Medicaid-funded home care, waiver services or other home and community-based services through the New York State Department of Health are not protected by the Justice Center. Instead of an independent agency addressing their complaint, these Disabled individuals must rely on NYS DOH which failed to enforce its own regulations even though the specifics of how URMHC was clearly communicated to them in writing.

The Justice Center operates a toll-free hotline 24 hours a day, seven days a week for receiving reports of allegations of abuse and neglect. The Justice Center is authorized to investigate these reports and pursue administrative sanctions against staff found responsible for misconduct. The agency’s Special Prosecutor/Inspector General works with local district attorneys who prosecute criminal offense allegations. The Justice Center also issues recommendations for corrective actions. It is time to expand the Justice Center to include people who receive services through the Department of Health, including people receiving Medicaid waiver services and other home care services.

Note: This document was prepared prior to NYS DOH reversing its decision on the preliminary finding of immediate jeopardy. Original text has been formatted as strikethrough to reflect CDR’s current understanding.