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Center for Disability Rights concerned about homecare agencies misrepresenting state rules, to deny Disabled individuals assistance with eating

Last week, after the Center for Disability Rights brought the issue to the attention of the Monroe County Department of Social Services, the county agency responded quickly to ensure that a licensed home care agency would not continue to refuse to assist a Disabled individual with eating.  “For Disabled individuals who need this type of support, this is literally an issue of life or death situation,” said Rebecca Payton, Director of Independent Living.    

CDR became aware of the issue when Stephanie Boise contacted her CDR advocate and reported that she was relying on neighbors in her apartment building to help her eat because her personal care aides were not providing this assistance.  Ms. Boise reported that Community Care Companions, which had served her for years, notified her by phone that her aides could no longer assist her with eating unless it was “hand over hand”.  This is when the disabled individual holds the eating utensil and the home care worker puts his or her hand over the disabled individual’s hand and then both hands move up to the mouth to feed the disabled individual.

Ms. Boise receives 24/7 or continuous Personal Care Assistance (PCA).  She has Cerebral Palsy with a speech impairment and, due to constriction of the muscles in her arms and hands, does not have the ability to feed herself; nor can she grasp a utensil “hand over hand” to get the food to her mouth.  She uses a power chair and moves the chair with a chin control rather than her hand.  Without full assistance, she would simply not be able to eat.

Upon being notified that she wasn’t going to get assistance to eat, Ms. Boise asked her home care nurse, “What the hell do you want me to do?”  According to Ms. Boise the nurse was quick to reply, “We could just close your case.”  CDR believes the policy was intended to end Ms. Boise’s services as home care agencies locally and across the state are facing a severe shortage of workers, but are still responsible for ensuring the needs of Disabled individuals are met.  Policies like this are a way they can reduce their caseloads and reduce their potential liability.

“I thought my nurse had my back but she obviously didn’t… all I am is another number. If I wasn’t the advocate I am I would have ended up in a nursing home,” said Ms. Boise.

CDR alerted Monroe County Social Services to the problem, and they confirmed with the Department of Health that assistance with eating does not require a “hand over hand” component and is an allowable task under State Personal Cares Services regulations.  After Monroe County DSS received the clarification from the Department of Health, they instructed the home care agency to reinstate this service. 

Although Monroe County has notified the agency that they needed to reverse their policy restricting an individual’s access to food and water and the issue with this individual was resolved, CDR is concerned that other Disabled individuals may have encountered this same situation and are at risk.  Without personal care aides providing assistance with eating to those who are least able to do the task for themselves, these individuals are at serious risk of institutionalization in nursing facilities which have been ground zero for the COVID-19 infection over the past year.

“No one wants to be forced into a nursing facility at the best of times, and these are not even close to the best of times for nursing facilities,” said Debbie Bonmo, CDR’s Board Chair.  “More than 1 of every 7 nursing facility resident in New York State has died from COVID-19. Implementing a policy like this is a death sentence.”

“We are concerned that this wasn’t an isolated situation,” said Rebecca Payton. “We are grateful that Monroe County reacted quickly to ensure Ms. Boise is able to get the assistance she needs to eat, but although Monroe County notified all of their PCA provider agencies that they cannot implement such a policy, we don’t know what individual agencies may be telling Disabled people. More people could be at risk.  We want to get the word out that if people are being told a policy like this exists that this is not legal and we can help them.”

CDR urges Monore County to facilitate reinstating community-based services for any individual who went into a nursing facility in response to such outlandish tactics.  CDR has also contacted the New York State Department of Health urge them to determine if this an issue in other parts in the state and to take steps to identify if any individuals were institutionalized over this policy and reinstate their community-based services. 

“We want Disabled individuals who are facing cuts to their home care services to contact us,” said Bonomo.  “That’s why CDR exists.”