During the pandemic, people began paying attention to the essential work done by Americans who can’t work from home. This includes the 4.6 million direct care workers who provide caregiving services to people with chronic conditions or disabilities, both in homes and residential facilities. This workforce is primarily made up of women, the majority women of color, many of whom are immigrants to the U.S. They go by different names — home health aides, personal care attendants, certified nursing assistants, or caregivers — and they provide services ranging from helping people bathe, dress, and eat to cleaning their homes and preparing meals, managing medication regimens, and providing companionship. Some are drawn to the field because of their experiences caring for family members and by the low barrier to entry; unlike some other entry-level careers in health care, direct care workers may not need training or certifications before finding work.
Still, employers struggle to recruit and retain direct care workers, in large part because median wages are only $12.27 an hour, on par with entry-level positions in retail or other fields that are much less demanding. Also, direct care jobs often don’t provide opportunities for advancement. “You go in as a home care worker earning a certain wage. You develop all that rich experience and knowledge and skills, and you are still a homecare worker earning pretty much the same wage 20 years later,” says Kezia Scales, Ph.D., director of policy research at PHI, a research and consulting nonprofit focused on the direct care workforce.
You go in as a home care worker earning a certain wage. You develop all that rich experience and knowledge and skills, and you are still a home care worker earning pretty much the same wage 20 years later.
Kezia Scales, Ph.D. Director of policy research, PHI
The demand for direct care workers will increase substantially in coming years as the population of older adults and people with disabilities in the U.S. swells. Much of the demand is expected to be for home care, as the pandemic hastens the long-term trend away from skilled nursing and other congregate-living facilities and toward home- and community-based services. Despite the shortage of staff, wages for direct care workers have remained flat. This is in large part because payment for direct care providers is mainly determined by states through their Medicaid long-term services and supports (LTSS) programs, which offer a range of benefits for those with disabilities and other conditions. “The funding comes up against other budgetary and political priorities,” says Scales. “And as the largest payer, Medicaid sets the industry standard for direct care wages.”
In an attempt to improve working conditions for direct care workers, the Department of Labor in 2015 extended the Fair Labor Standards Act to make home care workers eligible for the federal minimum wage and overtime. A 2020 Government Accountability Office found that many state Medicaid programs responded by limiting home care workers’ hours to avoid paying overtime, forcing some to cobble together different jobs to get by. In some places, direct care workers have won certain rights (e.g., health benefits or paid time off) as members of unions, but in some states they are barred from unionizing. An unknown number work for cash in private homes with little supervision or training.
Some employers gave direct care workers bonuses or hazard pay as they continued to show up for work during the pandemic, but there is growing consensus that policymakers and health care payers need to do more to recognize and reward the vital role direct care workers play in the health care continuum. Citing the need to bolster the “care infrastructure,” the Biden administration and Democratic members of Congress have called for a $400 billion investment to expand access to LTSS and increase wages and benefits for direct care workers. This issue of Transforming Care profiles efforts by employers and states to document direct care workers’ contributions and create new career pathways by offering them training and opportunities for advancement.
In this section, we examine innovative approaches taken by four organizations that employ different types of direct care workers: aides who support people with chronic physical and/or behavioral health conditions in their homes, personal care attendants who support people with intellectual and developmental disabilities, and certified nursing assistants who work in skilled nursing facilities.
Homebridge is a San Francisco–based agency that provides in-home supportive services each year to some 1,000 to 1,200 people with physical or cognitive disabilities that are often exacerbated by behavioral health problems and substance use disorders. Recruiting staff is an ongoing challenge. Some clients live in single-room occupancy hotels where there may be cockroaches, bedbugs, or other pests; others have such severe psychological or behavioral disorders that their functioning can change from day to day. “One day, they will let you in. The next day, the door will be slammed in your face,” says Simon Pitchford, Ph.D., Homebridge’s chief operating officer.
Given the challenging working conditions and the fact that many less-demanding jobs pay San Francisco’s relatively high minimum wage ($16.32 per hour), Homebridge’s leaders have taken an innovative recruitment approach: presenting the job as a gateway to other, more lucrative positions in health care. Homebridge offers a training program for its caregivers to help them become certified nursing assistants (CNAs) and eventually leave for higher-paid careers.
The Skills-Training and Employment Pathways to Success (STEPS) program was launched in 2018 in partnership with the City of San Francisco. The agency offers the free program to people who work for at least four months, have a good attendance record, and receive a supervisor’s recommendation. The curriculum covers topics like infection control, working with mechanical lifts, and self-care. It has four tiers: 1) basic training to work with any client, which starts upon hire; 2) training to support clients with mental health and substance use disorders; 3) training for clients with complex paramedical needs (e.g., for ostomy care); and 4) supplemental training to qualify for the CNA certification (a collaboration with City College of San Francisco).
Homebridge also raised caregivers’ starting wage, which is now $19.25, and increases wages as staff progress through the STEPS program. About 30 percent of those who have gone through the training have become supervisors, earning up to $28 an hour. Participants can also receive coaching to discuss career options, build their resumes, and complete mock interviews. “The whole idea is to change the perception of caregiving from being a single-tier minimum wage job to one where we are going to bring you in, train and upskill you, help you get certified, and then help you find your next step into a health care position,” says Pitchford.
An evaluation of the STEPS program found it changed Homebridge caregivers’ perception of their role. While some said they previously felt like housekeepers, gaining new skills made them feel more like nurses or paramedics. After one year, recruitment levels hadn’t changed much although retention improved somewhat, particularly during caregivers’ first six months when they may feel overwhelmed. The program may also be attracting younger workers: after it launched, new hires were twice as likely to be under age 26, outnumbering older age groups.
Within six months to a year after becoming Homebridge clients, people tend to have more stable lives, as measured by an average 51 percent reduction in hospitalizations and a 44 percent reduction in emergency department visits; clients are also less likely to miss doctors’ appointments (51%) or medication doses (52%). Most of the agency’s funding comes from San Francisco County’s Department of Disability and Aging Services for in-home supportive services. Its 300-plus caregivers are members of the local service workers’ union.
Cooperative Home Care Associates (CHCA) of New York City is the nation’s largest worker-owned cooperative, with 1,700 staff. Nearly all of CHCA’s clients — older adults and those with chronic conditions and/or disabilities — are covered by Medicaid or dually covered by Medicaid and Medicare. The company builds its staff pipeline through a free, four-week training program (funded in part through philanthropy) in which 600 people, mostly low-income women of color, earn certificates as personal care aides and home health aides each year, with guaranteed jobs for graduates interested in serving clients in Manhattan, Brooklyn, and the Bronx.
CHCA aides are members of 1199SEIU, the local service workers’ union, and their starting hourly wages are $15; they also receive dental, health, and life insurance benefits and paid time off. Employees can buy into the coop, which gets them voting rights and dividends when the coop is profitable; the latest dividends were $684 (in 2016), $298 (in 2017), and $292 (in 2018). Workers also receive financial literacy education and can access no-interest emergency loans, providing an alternative to predatory “payday” loans. Many aides advance to work as administrators, peer mentors, or other higher-paid positions within the agency.
In 2019, CHCA partnered with the nonprofit PHI and Independence Care System (ICS) — a nonprofit that offers care coordination services for older adults and people with disabilities in New York City — to create a three-month training program for aides to become care coordinators, envisioned as a bridge between the aides and other health care professionals. Leaders recognized that their aides were often the first to notice changes in clients’ conditions, but they sometimes struggled to know how or when to speak up. “We always believed that a home care worker is an integral part of the health care team,” says Latifa Beato, M.P.A., R.N., vice president of client services at CHCA. “But how do we take that role and bring it into the health care team when they’re working in the patient’s home largely unsupported?” The agency created a triage system so that aides could share their observations with care coordinators. Care coordinators also check on any patient that has had an emergency department visit and provide help in getting needed medications or making medical appointments.
As part of an early pilot of the concept, PHI trained aides from three home health agencies including CHCA to work with 1,400 clients of ICS. A study found the pilot was associated with an 8 percentage point decline in the rate of emergency department visits and reduced family caregiver strain among at least half of those involved.
CHCA partnered with the nonprofit research and consulting nonprofit, PHI, to create a training program for its aides to serve as care coordinators. They received 240 hours of training in chronic disease management and communication skills, as well as observation and reporting skills. The graduates were promoted to salaried positions and now offer coaching and support to home care workers and facilitate transitions in care for clients who have been discharged from the hospital or emergency department. Transforming Care spoke with CHCA’s three care coordinators: Yudelka Gomez, Marisol Rivera, and Rokhaya Sarr. One of them, Gomez, also sits on CHCA’s 14-member governing board, one of eight aides elected to help make decisions about the agency’s budget, executive management, and acquisitions.
Transforming Care: How did you become a home health aide?
Marisol Rivera: I was working as a volunteer in the Alzheimer’s department of a nursing home. One day, there was a work fair and it so happened CHCA had a table. I thought: this is something I enjoy doing, why not get paid for it? I came to the office for an interview and have been here since 1998. I loved the training. A lot of the ladies who were in the training became close friends. We called each other whenever we were confused at the start.
Rokhaya Sarr: I was working in a restaurant and after that I was working in a 99-cent store that my husband opened. One of my friends told me about the program and the benefits. I was very excited about the benefits. That’s why I came in. One of the first things I heard was that you could have a share in the company. Three or four years ago I went to see my mom back home in Senegal and one of my coworkers called me while I was there and said “Guess what? We got a dividend of a thousand dollars.” I was so happy. It helped me a lot.
Transforming Care: Before you became care coordinators, you worked as a home health aide for years. Can you give us a sense of what the job was like?
Rivera: I usually worked close to my home. You don’t realize how many people receive services in your own backyard. It exposes you to different cultures and different people. I remember one client who couldn’t communicate and was in a lot of pain. She frightened away a lot of home health aides and would get very frustrated with me. I would tell her I’m trying to do my best to help you. After she saw that I wasn’t going to leave her, her behavior changed. She came to trust me, and I always looked forward to going to work. Just before she died, she asked me to call people to say goodbye or just reach out. Because I had learned to read her lips, I could tell them what she wanted them to know.
Transforming Care: It sounds like you have to have a lot of patience. Is that part of the training?
Rivera: I think this is something that is me. It just comes naturally. I’ve always wanted to help even when I need help myself. Sometimes I say, “What am I getting myself into?” but I always manage to get through it.
Transforming Care: All three of you now work as care coordinators, fielding calls from home health and personal care aides in the field. Can you give us a sense of what you do day to day?
Sarr: We have to make sure that the member is safe in the community and avoids unnecessary hospitalization. Sometime the follow-up is quick and sometimes it’s not because there’s a lot of phone calls we have to make. If the client is requesting some medication, we have to call the doctor. We schedule transportation. It was smoother before the pandemic. Now you could spend two or three hours just for one client. Sometimes you are on hold for 40 minutes just waiting for someone to take the call.
Gomez: We also help home health aides when a client refuses to take medication or refuses to seek medical attention. When I was a home health aide, I was always trying to explain the good side of taking the medication or going to the doctor. With the pandemic, they were afraid to go outside, especially last year. Now it’s getting a little better. We also advised staff about how to use the PPE [personal protective equipment]. We told them to always wear the mask and all the equipment, especially at the beginning because we didn’t know how serious it was. We always encourage them to use the masks, to wash their hands, to use the gloves and gown when needed, and to report anything, any symptoms they notice in the clients. Now they’re getting vaccinated and they feel a bit more safe.
Transforming Care: What would make it easier for you to do your job or help you be more effective?
Rivera: It would really help if case managers at insurance companies could address things right away. Many of our clients rely on wheelchairs to meet their mobility needs. If their wheelchair isn’t working properly, the aide is not allowed to take the member out in the wheelchair. It takes a lot of time for them to do something about that. If they can’t use the wheelchair because of safety concerns — maybe it doesn’t have a seatbelt or a footrest — the client can’t get to the doctor. Or someone may be waiting for wound care to come. We try to help as much as we can by calling the doctors, getting prescriptions, making sure they received it, and asking supply companies how long it is going to take.
Transforming Care: It sounds like you’re caught between systems that don’t always work well. What do you think makes you successful in your job?
Sarr: You really have to put your heart into it. You have to put yourself in the same shoes as the client to be able to do what you’re supposed to do. The clients are so grateful. I have heard clients say, “If it were not because of you, I would not be able to stay at home safely.” When they say something like that, I am very proud of myself.
Gomez: When you call a person and they are grateful for what you did for them and they tell you you’re helping them — that’s my joy. And the aides too. We call them and let them know, whatever issues you have, we are here for you. I wish we would get more recognition for the type of job we do. Aides out there that deal with this every day, it’s a hard job to do. Getting paid a decent salary would be very helpful.
CNAs work in skilled nursing facilities, caring for long-term care residents as well as those who come to rehabilitate after a hospitalization. For these rehab patients, the transitions from a hospital to a skilled nursing facility and then home can be stressful at a time when they may feel unwell, may be functionally impaired, and may struggle to understand their treatment regimen. These and other factors make avoidable complications and unplanned hospital readmissions common.
Starting in 2017, Trinity Health Senior Communities, which operates skilled nursing and other facilities for older adults in six states, piloted a program to train and deploy CNAs as “transitions specialists,” shepherding rehab patients from the hospital through their Michigan skilled nursing facilities and then home. Trinity won a $1.5 million grant from Michigan to pilot the program.
Trinity recruited 12 CNAs, both internal candidates and new ones, to work in each of two facilities as transitions specialists. The nonprofit PHI developed a one-week training program to help the CNAs understand and report changes in three common chronic conditions among older adults: heart failure, diabetes, and chronic obstructive pulmonary disease. The training included case studies as well as coaching on effective communication approaches with patients and other members of the care team.
Before the admission of a new rehab patient, the transitions specialists work with admissions staff to understand their prognosis and discharge instructions; the specialists then meet patients upon their arrival at the skilled nursing facility. They use a survey to assess patients’ preferences and emotional and mental state and then ensure they get appropriate care, meals, and needed supplies. Importantly, the transitions specialists do not do the regular work of a CNA (e.g., bathing or delivering meals), instead checking in on each of their patients every day, participating in conferences with other members of the care team, and interacting with family members. They work with rehab patients for 30 days after their discharge to their homes, calling them to make sure they are stable and have the support they need.
According to Rakhi Sharma, Ph.D., operation lead, the CNAs initially found the new position hard but grew to love it. “This position gave them so much opportunity and empowered them,” she says. “Now they feel more like an advocate for the patient.” An external evaluation found this approach was associated with lower hospital readmission rates as well as greater satisfaction among rehab patients, who described transitions specialists “as their voice” and “go-to person.” The transitions specialists earned about $3 more per hour than CNAs, adding $5,000 to their annual income.
With the pilot nearly complete, most of the transitions specialists have moved on to better jobs, some within the same skilled nursing facilities, or to higher training (two are pursuing bachelor’s degrees and several are going back to nursing school). Sharma hopes to secure operational funding to expand this approach to more of Trinity’s facilities.
Core Services of Northeast Tennessee, based in Johnson City, employs 110 direct support professionals to care for 44 people with intellectual and developmental disabilities (IDD), most in supported-living homes managed by the agency. Core Services’ work is funded entirely through Tennessee’s Medicaid program.
Prompted by the state’s efforts to improve quality of life and encourage independence among people with IDD, the agency has undergone a transformation in recent years (see more on Tennessee’s Employment and Community First CHOICES Program in our report on models of care for people living with disabilities). In 2016, Core Services’ leaders, direct support professionals, and their supervisors embraced the concept of person-centered care, pursuing training offered by the state and the Council on Quality and Leadership. According to Susan Arwood, M.S., the agency’s executive director, this brought about a cultural shift, leading to changes in the way staff describe the people they serve (e.g., not using possessive words such as “my client”), new supports to help people with IDD find jobs (42 percent now work, up from none in 2015), and accommodating their desire for independence (eight moved into their own apartments).
Direct support professionals’ jobs also evolved as the agency adopted enabling technology to help people with IDD gain independence. Tablets that allow video communication, smart technology to lock and unlock doors, and automated medication dispensers reduced the need for round-the-clock support and led to total savings of about $10,000 per week. Rather than cutting staff hours or positions, Core Services promoted 10 direct support professionals into supervisory or other positions. Leaders have also used the savings to improve employee benefits: keeping their required contributions to health insurance premiums flat, sponsoring a life insurance program, and starting a retirement savings program with an employer match. (Nationally, only 15.6 percent of direct care workers receive retirement benefits from their employers.)
Leaders also adopted a person-centered approach to managing staff, setting up a worker council that meets each month to discuss problems and share ideas. Managers have acted on suggestions that emerge from these meetings, such as offering bonuses to people working extra overtime and allowing more flexible work schedules. “I think one of the things that’s really impacted our retention is people see us being receptive to their ideas and concerns,” says Arwood. Over the past four years, turnover rates fell by 50 percent. Vacancy rates for staff are well below the national average: 4 percent versus numbers in the teens, according to Nick Filarelli, program director. “We discovered that as the people we support became happier, we had a happier workforce and overtime rates, our turnover rate — everything went down,” Arwood says.
Starting pay for Core Services’ direct staff professionals is about $11 an hour, which is $1 to $1.50 more than other local agencies, according to Filarelli. Staff receive 75 cents per hour raises if they complete training with the National Alliance for Direct Support Professionals (about 15 percent have done so). During the pandemic, leaders used a Paycheck Protection Program loan to give workers three bonuses and retention rates held steady.
Given constraints on Medicaid funding, employers face challenges as they experiment with ways to better reward direct care workers and more effectively leverage their skills. Some programs rely on time-limited public or philanthropic funding. Documenting how better training or higher wages for direct care workers can improve people’s health and quality of life could encourage more stable funding for home care services, but getting the data needed to make the case has been a challenge for some employers.
Leaders at New York City’s CHCA, for example, have been working to document the value of their care coordinators and other direct care staff by demonstrating they can help avoid medical complications. But hospitals and other health care providers may not include home care as part of the health care continuum, for example by not sharing medical records. This can make it hard for home care providers to compile a complete picture of clients’ health. There’s also the difficulty of trying to prove a negative (e.g., demonstrating why someone didn’t fall or develop complications) without conducting what can be expensive research trials. And affording the technology platforms to document direct care workers’ efforts is also challenging, according to CHCA’s Beato. Instead of a narrow focus on health care utilization, she would also like to see measurement of how home health aides affect people’s quality of life, such as whether they “honor and respect people’s values and preferences and allow them to direct their own care as much as they can.” she says. “Recipients of long-term care services have the right to age in their communities with dignity, respect, and independence.”
Some states have sought to bolster their direct care workforce by enhancing reimbursement or developing standardized training approaches. For example, Minnesota requires those who employ personal care attendants to care for people with disabilities to spend at least 72.5 percent of their Medicaid reimbursement on aides’ wages and benefits, while New Jersey established a minimum hourly reimbursement rate for personal care services delivered under Medicaid managed care.
Other states, including Washington and Tennessee, have sought to develop training programs for direct care workers that link to advancement opportunities and/or wage increases. In 2018, Wisconsin developed a multifaceted approach to recruiting and retaining more people to work as CNAs in skilled nursing facilities (SNFs), based on evidence that they would soon be unable to meet demand. The state launched a marketing campaign for WisCaregiver Careers, using videos to illustrate the rewards of being a CNA and highlighting the fact it could be a pathway to a health care career. The state then offered free training and testing to certify people to become CNAs; they received 9,000 registrants — far more than anticipated or budgeted to pay for. “It caught us by surprise based on the low unemployment rates at that time,” says Kevin Coughlin, policy initiatives advisor for Wisconsin’s Department of Health Services. Eventually, 3,200 enrolled and most (71%) completed the training program and became CNAs.
The state also offered support to SNFs on best practices for recruitment and retention through webinars and other online resources. Participating SNFs paid $500 bonuses to CNAs who were still working in their facilities after six months. Wisconsin paid for WisCaregiver Careers in part using funds from the Civil Money Penalty program, which are collected from SNFs that are out of compliance with regulations. While other states have expressed interest in this approach, the Centers for Medicare and Medicaid Services has indicated these funds cannot be used to pay for training programs, Coughlin says.
