Michele May-Javeed opens the curtains to start the day at her brother's place. "The pathway to $20 is what we're fighting for," she said. "Just the simple dignity of being paid wages that we deserve." Yehyun Kim / ctmirror.org

Original reporting by Jenna Carlesso and Dave Altimari. Compiled by Gabby DeBenedictis.

Editor’s Note: This article is part of CT Mirror’s Spanish-language news coverage developed in partnership with Identidad Latina Multimedia.

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Home care services — which allow people to age at home, rather than in nursing homes — are growing in popularity in Connecticut.

Home care is ideal for both residents and the state. Most people prefer to age at home, and it costs less for the state to fund a Medicaid recipient in home care than in a nursing home.

But the shift away from nursing homes has exposed a home care industry that operates with little oversight, is hard for consumers to navigate, and has a dire shortage of chronically underpaid workers.

Here’s what you need to know about the industry’s growth and the issues facing it.

Home care is a fast-growing field in Connecticut. In 2011, there were nearly 21,000 home health and personal care aides working in the state. By 2021, there were about 38,000.

By 2040, state leaders expect a nearly 30% increase in the number of long-term care residents on Medicaid who remain in their homes, and they’ve committed more than $1 billion annually to that cause.

The number of Homemaker Companion Agencies (HCAs), one element of the home care industry, has tripled in the last decade, growing from 308 to 903.

Several types of home care are available.

With the state placing more money and emphasis on keeping people out of nursing homes, there are several options available for aging in place, according to Tracy Wodatch, the president of the Connecticut Association for Healthcare at Home.

The highest level of care would be by a licensed home health care professional. Wodatch said this is someone who can administer medications, including shots if necessary, and would be needed by anyone with long-term health concerns. Consumers must have an order from a health care provider to access these services.

“The other level of care is what we would call long-term services and supports,” she said. “Somebody doesn’t really have a medical diagnosis, maybe they have some dementia, they can’t live alone, but they’re certainly able to get up and about, they might not remember to take their medications, they might not remember to take a shower or eat. So they really need a support system in there to help them with a structured day.”

At this level, she said, residents on state Medicaid waivers can hire a personal care aide, or PCA, to help them with daily tasks.

The third level of care is what Wodatch refers to as “agency-based, long-term services and supports.” Those are usually provided by a homemaker companion agency, she said.

All homemaker companion agencies must be registered with DCP, but their workers are not licensed by the state.

Many people have a hard time navigating the system.

Difficulty navigating the system has left many people feeling lost.

One issue is the absence of an updated home care worker registry. People on the state’s Medicaid program seeking care at home receive a binder with printed pages containing the names and contact information of potential employees.

But several residents have said the paper registry, produced by the state’s payroll agency, does not have up-to-date information for employees. Some people reported spending weeks calling candidates, only to be told they no longer work in the field, they could not take on additional clients, they did not live within a reasonable commuting distance or, in cases of people with special needs, they did not have the right skills.

Workers have complained about providing updated contact information but never seeing it reflected in the registry.

Oversight of the industry is lacking …

Homemaker companion agencies are overseen by the state Department of Consumer Protection. Unlike nursing home employees and home health aides, who must be licensed by the state Department of Public Health, there is no licensing process for HCA workers. Instead, homemaker companion agencies must register annually with DCP.

Managers at the companies are required to conduct criminal background checks on prospective employees but aren’t required to share that information with DCP, which does not track who works at the more than 900 HCAs registered with the state.

The result is an industry that some elder care experts refer to as the “wild west,” because there is little oversight, unlike long-term care facilities, which are heavily regulated by the state Department of Public Health.

… but a task force has studied and recommended long-term oversight solutions.

The task force recently submitted a 26-page report to the Aging Committee, which used it as the basis of a bill that went to a public hearing in February and drew more than 40 comments, nearly all of which were favorable.

The task force’s most significant recommendation — transferring oversight of HCAs from consumer protection to the public health department by July 1, 2024 — was adopted and approved by the Aging Committee despite concerns raised by officials from both agencies. 

The bill also requires the DCP commissioner to revoke a certificate of registration if an agency violates certain provisions three times in one calendar year, to create a guide that details how to file a complaint against a homemaker-companion agency, and to develop a plan to implement mandatory training standards for agency employees.

Many home care providers receive low pay and have trouble paying for housing.

Turnover is 30% to 50% a year in the 11,000-member unionized workforce of personal care aides that serves residents on Medicaid. Low wages, problems getting paid on time and, until recently, a lack of paid time off have hampered efforts to keep workers in the industry.

Nationally, the median pay for home health and personal care aides in 2021 was $14.15 per hour, or $29,430 per year, according to the Bureau of Labor Statistics.

Until recently, the personal care aides represented by 1199 SEIU in Connecticut made an average salary of $16.25 per hour, or $33,800 annually. After more than a year of rallies and bargaining, the union reached a new agreement with the state that raised pay to $17.75 an hour in 2022. For many members, it increased again to $18.25 this year.

In a 2022 union survey, roughly one-third of the personal care aides reported being behind on their rent or mortgage payments during the last year. Forty-two percent said they had paid late fees or were referred to a collection agency for unpaid bills, and more than one in five received a shutoff notice for utilities or had their utilities turned off during the past year.

Thirty-seven percent of the aides said they rely on food stamps, and a third could not afford groceries or did not have enough food to feed their families over the last year. Seventy-two percent reported using some form of state assistance.

Yehyun Kim / ctmirror.org

“CT’s Elder Care Reckoning” is a four-part series about Connecticut’s aging population and the challenges in finding ways to care for people.

Want to share what you know? Send your tips to Jenna Carlesso at jcarlesso@ctmirror.org or Dave Altimari at daltimari@ctmirror.org.


PROJECT CREDITS

Reporting: Dave Altimari, Jenna Carlesso
Photography: Yehyun Kim
Data visualization: Katy Golvala
Editing: Elizabeth Hamilton, Stephen Busemeyer, Keila Torres Ocasio
Social media: Gabby DeBenedictis, Nicole McIsaac
Web development: Kyle Constable

CT Mirror Explains

Finding answers to big questions in Connecticut. CT Mirror Explains is an ongoing effort to distill our wide-ranging reporting on Connecticut topics into a "what you need to know" format.