Guest Post: OP-ED Fair Pay Act for Home Care Workers 

The following is a guest post by Jed A. Levine, President Emeritus of CaringKind, a New York City organization that works with community partners to develop the information, tools and training to support individuals and families affected by dementia.

Alzheimer’s disease and related disorders (AD/RD) are a major public health crisis in New York. It is a progressive condition which results in increasing dependence on others for all activities of daily living. As baby boomers age, the risk of developing Alzheimer’s dramatically increases. There are an estimated 6 million Americans living with Alzheimer’s, with another 7 million projected in the next 20 years. We estimate that there are over 400,000 New Yorkers living with AD/RD. Because of the burden of care, we face a major workforce dilemma: who will care for those with dementia? Families provide an estimated 70% of the care, but they cannot do it alone. Families are dependent upon home workers to provide essential, critical health care for a family member with Alzheimer's. Home care workers ensure that the person with dementia is clean, well fed, and safe, preventing malnutrition, dehydration, skin breakdown, bedsores, and maintaining the basic components of good health.  Home care is health care! Home care workers provide emotional support and meaningful engagement for individuals with dementia, a rewarding relationship for both.  

The Alzheimer's community is dependent on a well-paid home care workforce. Without adequate compensation it is simply impossible to attract enough dedicated professionals to this work. This has resulted in NY having the largest shortage of home care workers in the nation. Individuals with Alzheimer's rely on the availability of home care workers to continue to live in their own homes. This avoids the more costly and less desired placement in residential care. This is why CaringKInd staunchly supports the Fair Pay for Home Care Act before Governor Kathy Hochul and the state legislature. 

Being a home care professional is a challenging, demanding profession that requires an array of skills, including physical strength, extensive health care skills and compassion. Too often, home care workers can earn more in a fast-food establishment. Without enough home care workers to meet the burgeoning demand, the burden falls upon a family member. Two-thirds of family caregivers are women. Many are compelled to reduce hours at work, transition to part-time work, or to stop work altogether. This perpetuates female poverty. Over one-third of family caregivers have symptoms of clinical depression and report greater stress than caregivers of non-dementia older adults. https://www.caregiver.org/resource/caregiver-health/?via=research-policy,research-and-reports#15. 

Families can wait for months to secure home care because of a lack of available workers. CaringKind calls upon Governor Hochul and the state legislature to pass Fair Pay for Home Care in this year’s budget. Fair Pay for Home Care would end the home care shortage in NY within five years.https://slu.cuny.edu/wp-content/uploads/2021/03/The-Case-for-Public-Investment-in-Higher-Pay-for-New-York-State-H.pdf 

Ending the state’s policy of neglect and poverty wages would be a major milestone for our new Governor and state legislature.  

Many family caregivers, especially spouses, are older adults. Home care is critical to their well-being. Mrs. Wang, 80 years old, is the primary caregiver for her 90-year-old husband with advanced dementia. Mrs.  Wang had home care in the daytime, but she was his sole care provider in the evening. At night Mr. Wang was at substantial risk of falling. He needed support to get to the bathroom. Sometimes Mr. Wang became disoriented and wanted to leave the apartment. When Mrs. Wang was diagnosed with colorectal cancer requiring immediate surgery, she was terrified. Their adult children did not live nearby and had responsibilities that prevented them from assisting their father in the evenings. With additional home care hours, and the reassurance of having a familiar person in the home, Mrs. Wang gained the peace of mind to have the surgery and recover. NY’s care system cannot depend upon 80-year-old women caring for their 90-year-old husbands alone.   

We at CaringKind are proud of our history of training and supporting home care workers and family caregivers. CaringKind offers dementia specific training which imparts knowledge and practical tools to empower both home care workers and family members. Our organization has always considered home care workers an essential and valuable part of our community, worthy of our support and advocacy. 

CaringKind joins forces with the NY Caring Majority, Jews for Racial and Economic Justice and AARP to offer our resolute support of The Fair Pay Act for home care workers, S. 5374/A. 6329. We strongly encourage the Governor and state legislature to include the Act in this year’s budget. 

Jed A. Levine, President Emeritus,  CaringKind, The Heart of Alzheimer’s Caregiving
Direct line: 646-744-2902 
www.caringkindnyc.org