CENTER FOR DISABILITY RIGHTS CALLS ON UNIVERSITY OF ROCHESTER MEDICAL HOME CARE TO RESTORE HOME CARE SERVICES FOR LOCAL DISABLED WOMAN WHO WON FAIR HEARING; CDR URGES FOR SYSTEMIC REFORMS TO ADDRESS THIS FORM OF VIOLENCE AGAINST PEOPLE WITH DISABILITIES

FOR IMMEDIATE RELEASE: May 2, 2023

CONTACT: Bruce Darling, President, Center for Disability Rights, 585-370-6690 or bdarling@cdrnys.org

On March 10th, after months of advocacy, Teresa Carroll – a Rochester woman with a spinal cord injury – believed that she would finally have her home health aide services restored because she won her fair hearing against University of Rochester Medical Home Care (URMHC). The decision found that URMHC illegally terminated Ms. Carroll’s home health care services and ordered the agency to restore them immediately. Even so, URMHC – a Home Health Care Agency operated as part of the University of Rochester’s Medical Center – has failed to comply with the decision. Ms. Carroll and the Center for Disability Rights have now filed a Request for Compliance with the New York State Office of Temporary and Disability Assistance.

Link to Fair Hearing Decision:
https://forms.cdrnys.org/uploads/8517276Q-March-10-2023.pdf

Link to Request for Compliance:
https://forms.cdrnys.org/uploads/TC%20Request%20for%20Compliance%20with%20att.pdf

“Although Ms. Carroll had been receiving Home Health Aide services from the University of Rochester Medical Center’s home care agency for approximately 36 years, for the last eight months the agency has refused to provide the services that Teresa is entitled to under the law,” said Bruce Darling, President/CEO of the Center for Disability Rights. “Legally URMHC should have never terminated her services. Teresa has won her fair hearing. Now, the University needs to comply with the decision.”

As background, in October 2022, URMHC sent a notice to Ms. Carroll indicating that they would no longer provide her with home care services, but they agreed to continue providing skilled care for medically-related tasks. URMHC then ended all of her services. Ms. Carroll was left without aides to assist her with even the most basic tasks – getting out of bed, bathing, eating – and initially relied on volunteers for her basic needs. “No Disabled person should be left without services like this,” said Alex Thompson, Advocacy Coordinator of United Spinal Association’s Hudson Valley Chapter. “A lot of other people would have ended up in the hospital, nursing facility, or worse. I am glad that Ms. Carroll made it through this experience but grieve for others who don’t.”

Recognizing the precarious situation Ms. Carroll was in, Mr. Darling notified state and local public officials that URMHC precipitously stopped providing home care services, pointing out that the home care agency violated state regulations and denied Ms. Carroll her right to due process in the Medicaid program, including her right to continue receiving services while she appealed their decision. Mr. Darling contacted the NYS Health Department and urged them to intercede, citing the specific regulations UR Home Care violated. The agency made a preliminary finding of immediate jeopardy against URMHC for failure to “ensure that services were in place through another Home Health Agency prior to discharging the patient,” but according to URMHC, NYS DOH subsequently “negated/expunged” these preliminary findings. “The response from Governor Hochul’s Health Department was disturbing,” said Darling. “They seemed to miss the point entirely. Although we cited the applicable regulations and explained how URMHC had violated them, the Health Department failed to enforce their own regulations. I can’t reconcile their inaction with the fact that they are the regulatory oversight agency.”

When home health care services ordered by a doctor are terminated or reduced, regulations require that the case be referred to the county as part of a Disabled Medicaid recipient’s right to due process. CDR notified Monroe County of the illegal termination of Ms. Carroll’s services and urged the county to intervene. Despite calls to the County Executive’s office and conversations with the Deputy County Executive, Monroe County would not take action. Monroe County had the power to intervene by reminding URMHC that they were responsible for following the law which requires them to find another CHHA or refer the case to the county for review as well as the fact that the CHHA was required to continue providing services until the matter was resolved. These protections were established as part of a court order in Catanzano v. Dowling (https://casetext.com/case/catanzano-by-catanzano-v-dowling).

Link to NYS DOH regulations:
https://regs.health.ny.gov/content/section-50523-home-health-services
See Appendix 1-Catanzano Implementation Plan.

“The County’s refusal to take action is inexcusable,” said Susan Stahl, an attendant service user who serves as Assistant Director of Transition and Housing Services at CDR. “Teresa was left without assistance for her most basic needs. I don’t understand whether Monroe County failed to address these concerns because of an ableist belief that a disability-led organization wouldn’t understand the law or whether they were intimidated by the wealth and power of the university. Either way, Monroe County’s failure to act put Ms. Carroll at risk and extended this nightmare by months. The County Executive needs to address that.”

CDR also contacted the CEO and board members of URMHC, specifically reaching out to independent board members who don’t work for the university or its affiliate organizations. Although these board members listened to the concerns of advocates, legal counsel instructed board members to not respond to CDR. “Now that the fair hearing decision clearly determined URMHC violated Ms. Carroll’s rights, we look forward to meeting with Ann Marie Cook of LifeSpan and other independent board members,” said Darling. “Ms. Cook’s experience in addressing abuse and neglect will be invaluable for the organization she helps govern.”

CDR also reached out to UR President Sarah Manglesdorf. Although the university is known in the Disability Community for being inaccessible and ableist, CDR hoped that President Manglesdorf could understand the concerns being raised as a form of ableist oppression. Unlike Ms. Cook, President Manglesdorf refused to even listen to CDR advocates. “We expected better from President Mangelsdorf given her public commitment to diversity, equity, and inclusion,” said Ms. Stahl. “It is sadly clear that her commitment is performative, or she is ableist and doesn’t think these principles apply to people with disabilities.”

Even after another agency began providing personal care services, for a period of time Ms. Carroll still had no assistance with any “skilled service” needs because those services could not be performed by a personal care aide. This included assistance with her bowel program – a process that uses a suppository to empty a spinal cord injured person’s bowels. By refusing to assist Ms. Carroll in emptying her bowels, URMHC put her at risk for serious health consequences. She risked skin ulcers from sitting in feces, dangerous infections, or becoming impacted and possibly requiring surgery. “This is unconscionable,” said Kenyatta DaCosta, CDR’s Board Chair who also uses personal assistance services. “As a hospital that provides rehabilitation services to people with spinal cord injuries, they know how bad that is”

Eventually URMHC agreed to provide skilled services on a limited basis. URMHC would send a nurse to start the bowel program and insert the suppository, but the nurse would immediately leave. A personal care aide from another agency was supposed to come to the house and finish the bowel program, clean up Ms. Carroll and get her dressed and ready for the day. The aide, however, could not under state law verify that Ms. Carroll’s bowels were fully evacuated. Additionally, the aide didn’t always show up. Even when an aide was not there, the URMHC nurse would still leave. Ms. Carroll would be alone, lying in feces, until someone else would show up. Just prior to receiving the fair hearing decision, Ms. Carroll was left like this for nine hours. “That’s not neglect; it’s abuse,” said Denise Figueroa, Executive Director of the Independent Living Center of the Hudson Valley. The fact that they did this to her repeatedly after she fought to assert her Medicaid due process rights is the definition of retaliation.”

Although the home care agency has said that they didn’t have the staff to meet Ms. Carroll’s needs, in the Request for Compliance Ms. Carroll and her advocates pointed out that the University of Rochester – with more than 30,000 employees – should be able to cover the limited number of hours she needed service. “They can use current employees, pay a better wage, offer a hiring bonus, or limit intakes of new clients,” said Ms. Carroll.

Advocates were surprised at what they would find as they prepared the Request for Compliance: Although URMHC cited a staffing shortage for the reason Ms. Carroll wasn’t getting services, they URMHC actually were not recruiting for Home Health Aides in Rochester. “Posting the job is the most basic thing an employer who needs staff does. The position was only posted days ago on Indeed. It is appalling that they would leave me alone and lying in feces for hours at a time, and they weren’t even trying to find someone to assist me,” said Ms. Carroll.

People unfamiliar with the home care system may assume that Ms. Carroll could simply change agencies, but that is not an option for her. Home Health Aide services, upon which she relies, can only be provided by a Certified Home Health Agency (CHHA). URMHC is one of only three CHHAs that serve Monroe County. None of the other local CHHAs accepted her as a new client.

“URMHC needs to understand that Teresa is fighting to save her freedom and independence. Instead of doing everything they can to drive her into a nursing facility or hospital where they could force her into a nursing facility, URMHC needs to comply with the fair hearing decision,” said Ms. Stahl.

This situation illustrates how difficult it can be for Disabled New Yorkers to remain in their own homes. During the individual advocacy, CDR identified a number of systemic issues, but none of the parties involved in this were willing to address them. They either were unresponsive or used the legal dispute as a reason. “There is no legal dispute now,” said Darling. “First, URMHC needs to get services in place, then the systemic issues need to be addressed.” CDR is reaching out to each of the various public officials to begin that dialogue. https://cdrnys.org/blog/uncategorized/systemic-reform/

Ms. Carroll’s harrowing experience of being left alone in feces by URMHC nurses has highlighted the need for an independent agency to address neglect and abuse of people with disabilities receiving home care and other home and community-based services. CDR is working with our local delegation in the NYS legislature on legislation to expand the scope of the NYS Justice Center for the Protection of People with Special Needs so that it is empowered to do this. “It is clear that people with disabilities who use these services need an independent agency to address neglect and abuse,” said Maximino Rodriguez, CDR’s Manager of Government Affairs. “We hope that the legislature and Governor recognize this critical gap and take action to ensure people are protected.”

Finally, CDR is concerned that URMHC or other home care agencies may have illegally or inappropriately reduced or terminated services for other people. CDR urges individuals who have had their services reduced or terminated to contact the organization for assistance. “It is important for Disabled and elderly people who feel their rights have been violated to contact CDR,” said Darling. “If people have had their home care services cut or reduced, they should definitely call us.”

It is important to remember that Ms. Carroll is still waiting for URMHC to restore services. “While I’ve been waiting for services, URMC was advertising itself during the Super Bowl show. I think that says a lot about their misplaced priorities. I am hoping that by drawing public attention to this that URMHC will finally restore my services,” said Ms. Carroll. “I want my life back.”

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