Written by Annette Murphy, MSW, LSW, C-ASWCM
Director of Home Care and Care Management

Finding the best care options for your loved one is an important and often confusing process. Learning a little bit about the options and some of the pitfalls at the start can set you and your loved ones on a solid path for care decisions. Family caregivers, like all of us, cannot do everything all of the time. Knowing when professional help is needed is the first step. However, many times fear and uncertainty stop us from taking the next steps. Many are fearful of having someone in their home, worried about how to get their loved one to accept care, or not sure if an agency is needed for a home health aide care.

I have worked for many years as a social work discharge planner, prior to becoming the Director for Springpoint at Home’s home care and care management services. All too often I was the first person to talk to families about the differences in Medicare vs private pay home care, the limits of their insurance and their need to hire ongoing supervision at home out of their own funds. When it was clear that private pay care was needed and families were sticker shocked at the average fees of about 25$+ per hour, I too use to think that “what is the harm if they find a nice person who their neighbor or friend knows to save some money?” However, over my years of working in this health care space, I have learned and seen many of the pitfalls of what is referred to as the “grey market” in home care. Recently I am now seeing other professionals writing about the hidden dangers. Pamela D. Wilson (“The Caregiving Trap”) writes about how families trust their ‘gut feelings’ and are eager for help but are not aware of the risks to themselves. Caring Connections, a New Jersey nonprofit health care professionals’ group, has recently put out an educational campaign to inform the public and other professionals on some of these risks.

Salary and Tax Risks
The Department of Labor requires aides to be paid for all hours worked. No flat rates. Families are required to pay Social Security and Unemployment and payroll taxes. Failure to meet this obligation may result in civil fines and possible criminal penalties. I have personally seen families and Certified home aides who took private side jobs be fined as a result of routine audits.

Liability and Care Risks
The family is ultimately responsible for any liability due to an injury to the person being cared for or the caregiver. Families are responsible for the duties of an aide under their employment. Any harm without RN supervision (like that offered with an accredited home care agency) could result in civil or criminal penalties. There is also no back up plan for sick or time off. I’ve heard of the kindest and dedicated private caregivers falling sick due to the work they are doing and since they did not pay into social security and disability they had few options but to sue their private family for compensation.

Abuse and Exploitation
A reference from a friend is not enough! Without a background check that all agencies are required to complete, the risks for manipulation and exploitation are markedly greater. An agency has an RN supervisor that oversees the staff to be sure they adhere to policies and watch for signs of boundaries being crossed. For example, I have seen many instances of aides seeing that the family adores them and is now dependent upon them and therefore they raise the rates, they charge them more per hour when the family goes away and has no other options or the aide starts to tell them more and more of their own personal stories about hardship and need and manipulate the situation to gain more money or items of worth. Families often give in as they don’t feel it is exploitation, but rather something that this caregiver needs or ‘should’ have for the care. Boundaries are often crossed due to the very personal and close nature of the work. An agency will intervene and oversee any red flags of such behavior.

Financial Risks
The biggest risk that most families are now more aware of is regarding the spend-down requirements for Medicaid. Paying money to someone under the table is not a legal disbursement of funds and will be counted as a ‘gift’ in look back periods for Government benefits resulting in a penalty or even disqualification of funding for care. I have witnessed families being denied Medicaid and being forced to take their loved one home from rehab because the money was now all gone, and they had no legitimate proof of where it went
resulting in no pay source for their loved one to stay in much needed nursing home care. They took their loved one home to care for the person themselves and disrupt their own lives.

Home care agencies are not infallible but there are many more risks to hiring privately (Jennifer Fitzpatrick, “Cruising Through Caregiving, Reducing Stress of Caring for Your Loved One”). All home care agencies in New Jersey now must be accredited as of June 2019. This means that all agencies are overseen by the Division of Consumer Affairs and are held to a higher standard of protecting your rights and having an RN oversee all care given in the home. If you would like to learn more please reach out and I would love to connect you with more resources to give you peace of mind and enable you to focus on the most important role you have – being a loved one who cares for someone who needs you.