Home Care in Crisis

Everyone agrees the answer to the critical shortage of caregivers is good jobs. But how do we get there?

Kathryn Joyce October 9, 2014

CHCA instructor Bibi Ameer conducts a home care training for underemployed women in Brooklyn. (Courtesy of the Paraprofessional Healthcare Institute)

In most indus­tries, it’s not cat­a­stroph­ic when an employ­ee doesn’t show up to work. But last Decem­ber, a few weeks before Christ­mas, my mother’s long-time home health aide announced that she had to go on indef­i­nite leave, which left my fam­i­ly reel­ing. That’s becom­ing an all-too-com­mon sto­ry thanks to a grow­ing short­age of home care work­ers, a prob­lem that rais­es thorny issues of who’s able to union­ize and which jobs — and which work­ers — we value.

I was 7 when my moth­er, a high school Eng­lish teacher in upstate New York, was diag­nosed with mul­ti­ple scle­ro­sis (MS). Over the next sev­er­al decades, MS pro­gres­sive­ly robbed her of many of the things she loved. First her sta­mi­na and abil­i­ty to tol­er­ate hot sum­mers; lat­er her bal­ance and her pride, as strangers assumed her stag­ger­ing walk meant she was drunk. When I was in mid­dle school, MS forced my mom out of her teach­ing career, and by the time I grad­u­at­ed from col­lege, it had rel­e­gat­ed her to a wheelchair.

My mother’s ini­tial diag­no­sis was of a type of MS called relaps­ing-remit­ting, marked by peri­od­ic flare-ups that came on as mys­te­ri­ous­ly as they retreat­ed, but which took some­thing with them each time they left. More than once, the dis­ease threat­ened to sep­a­rate our fam­i­ly, as doc­tors sug­gest­ed that she need­ed to be cared for in a nurs­ing home. But even­tu­al­ly, the dis­ease seemed to plateau, leav­ing my moth­er at a rel­a­tive­ly sta­ble lev­el of dis­abil­i­ty. That plateau is where my par­ents have lived their lives for most of the last decade, fol­low­ing a care­ful­ly planned rou­tine of meals and exer­cis­es, wheel­chair trans­fers and naps, and con­tend­ing with a series of com­pli­ca­tions, pre­dictable only in that there’s always some­thing new. It’s an almost impos­si­ble bal­ance, and one that depends heav­i­ly on the two hours of dai­ly sup­port they receive from their home health aide, a gruff but capa­ble woman I’ll call Shirley.

Six days a week, Shirley helps my moth­er with every­thing from bathing and dress­ing to stretch­ing and exer­cis­es to orga­ni­za­tion­al projects around the house, which also gives my father a two-hour reprieve to run errands and take his dai­ly walk. But while my par­ents are in their ear­ly 60s, Shirley is a few years old­er still. And in Decem­ber of 2013, Shirley announced that it would be her last day for the fore­see­able future, while she attend­ed to per­son­al fam­i­ly issues of her own. When my father called to tell me, it was like the air had gone out of him. He and my moth­er knew, from pre­vi­ous expe­ri­ence, what the next few months would bring: a rota­tion of new aides, unfa­mil­iar with my mother’s con­di­tion and liable to find her case too dif­fi­cult to stay on. In their small, rur­al town, trained health aides are already few and far between, and can con­se­quent­ly be selec­tive about their case­load, choos­ing between able-bod­ied senior cit­i­zens who just need help going to the gro­cery store and more inten­sive cas­es assist­ing those with severe dis­abil­i­ties. My mother’s care is undoubt­ed­ly one of the hard­er jobs.

Over the next two and a half months, sev­er­al new aides came through, but none stayed full time. In the end, the local agency was only able to replace four of the 12 hours per week that were med­ical­ly pre­scribed for my mother’s care. The agency was apolo­getic, but at a loss — too short on staff to cov­er not just my mother’s miss­ing eight hours, but a total of 200 hours pre­scribed to patients across the three-town rur­al area it serves, like­ly affect­ing dozens of fam­i­lies. It wasn’t just them, the agency explained, but rather a prob­lem that’s hap­pen­ing nation­wide, par­tic­u­lar­ly out­side cities, as the demand for home health­care out­strips the num­ber of peo­ple able or will­ing to do the work.

Con­sis­ten­cy of care’

The rea­sons for the short­age are clear enough. Home care aides have a hard job. Not just phys­i­cal­ly tax­ing, it’s often messy and poten­tial­ly dan­ger­ous, with risk of injury from help­ing lift clients or infec­tion from body flu­ids. And though it’s con­sid­ered unskilled work, aides walk a com­pli­cat­ed line. Their work­places are also their clients’ homes, turn­ing the work­er into a guest, and demand­ing that all par­ties pos­sess the inter­per­son­al skills to accom­mo­date everyone’s change­able roles.

But what makes this hard job too often a bad job is the dis­re­spect the work­ers receive — some­times from their clients, but most often from the sys­tem. There’s lit­tle room for advance­ment, leav­ing work­ers stag­nat­ing in entry-lev­el posi­tions, some­times for decades. And of course, home health and per­son­al aides are so famous­ly under­paid that many teeter on the pover­ty line and rely on gov­ern­ment assis­tance to sup­ple­ment low wages.

That’s part­ly thanks to the gen­dered nature of the work: a form of low-skilled labor that takes place inside the home and is thought of as women’s work — fit to be com­pen­sat­ed in plat­i­tudes rather than a liv­ing wage.

It’s also due to racism. Along with agri­cul­tur­al work­ers, domes­tic work­ers were delib­er­ate­ly exclud­ed from New Deal min­i­mum-wage and over­time laws, as a sop to South­ern sen­a­tors who want­ed to keep the most­ly African-Amer­i­can work­ers in a state of semi-slav­ery. When Con­gress extend­ed min­i­mum-wage and over­time pro­tec­tions to some domes­tic work­ers in 1974, many home care work­ers were again exclud­ed, under an exemp­tion that treats them as com­pan­ions.” It was only last year that Pres­i­dent Oba­ma issued an exec­u­tive order extend­ing these pro­tec­tions to home care work­ers begin­ning in 2015 — and the admin­is­tra­tion has now delayed imple­men­ta­tion for six months, until June 2015.

Yet that mea­sure is only the bare min­i­mum, says Sheila Bap­at, author of Part of the Fam­i­ly? Nan­nies, House-keep­ers, Care­givers and the Bat­tle for Domes­tic Work­ers’ Rights. Obama’s reg­u­la­tions are rad­i­cal in the face of the his­to­ry of racist exclu­sion, but they are also so basic — they just bring home care work­ers up to the cur­rent pay floor. There are so many fac­tors beyond take-home pay: con­trol over sched­ules, fringe ben­e­fits like health-care, your boss or your client’s regard for you, paid time off, and more.”

Today, the home care work­force looks in many ways like it has for a cen­tu­ry: 90 per­cent women and 56 per­cent peo­ple of col­or. Many are recent immi­grants, and most are mid­dle-aged or old­er, with work­ers aging along­side their clients.

The dif­fi­cul­ty of the work and the sys­temic dis­re­spect has led to high turnover and low recruit­ment. The short­age already expe­ri­enced in rur­al areas like upstate New York is a sign of things to come nation­wide. While urban areas may still have a large enough pop­u­la­tion of poor women and immi­grant work­ers will­ing to take on the jobs oth­ers refuse, even cities are set to face a crit­i­cal home care work­er short­age soon. Aging Baby Boomers over­whelm­ing­ly want to remain at home, and states and insur­ance pay­ers rec­og­nize that home care is more cost-effec­tive than exor­bi­tant­ly expen­sive nurs­ing insti­tu­tions. The Bureau of Labor Sta­tis­tics has pre­dict­ed that there will be a 48 per­cent increase in nation­al demand for home nurs­ing and per­son­al assis­tants by 2022, even as the cur­rent work­ers con­tin­ue aging out of their jobs.

That makes home health­care a grow­ing indus­try, every­one agrees, but it’s one that comes with a catch for indus­try lead­ers. Unlike many oth­er low-skilled ser­vice-sec­tor jobs, where work­ers are treat­ed as dis­pos­able, the key to pro­vid­ing good home health ser­vices is what the indus­try calls con­sis­ten­cy of care.” From the per­spec­tive of con­sumer-patients, home care only works well when they can rely on hav­ing the same high-qual­i­ty work­er stay with them for years.

The gen­er­al solu­tion that econ­o­mists and health­care pro­fes­sion­als rec­og­nize seems sim­ple: To attract and keep more work­ers in posi­tions that are known as bad jobs, they have to make those jobs bet­ter. And that real­iza­tion has led to an unusu­al sit­u­a­tion, where many work­ers, employ­ers, clients and pay­ers are all striv­ing for the same goal.

After Har­ris v. Quinn

This June, the Supreme Court weighed in on the efforts of one state to do just that. In the face of extreme­ly high turnover and short­ages in some areas, Illi­nois want­ed to fig­ure out how to make its home care work­force more sus­tain­able. The issues were pre­dictable: Work­ers were bad­ly paid, often poor­ly trained, and some­times lacked the most basic sup­plies, such as gloves.

But the state was faced with a prob­lem. Home care work­ers are, almost by def­i­n­i­tion, an iso­lat­ed and dis­con­nect­ed work­force, with each employ­ee work­ing in some­one else’s home, rarely com­ing togeth­er in a com­mon office or shop.

There’s a whole range of patients, a whole range of sce­nar­ios, and dif­fer­ent types of train­ing,” explains Moshe Mar­vit, a fel­low at the Cen­tu­ry Foun­da­tion and co-author of Why Labor Orga­niz­ing Should be a Civ­il Right: Rebuild­ing a Mid­dle-Class Democ­ra­cy by Enhanc­ing Work­er Voice. Fig­ur­ing out how to man­age that work­force is extra­or­di­nar­i­ly tough.” Rather than rein­vent the wheel, Illi­nois turned to the union mod­el, defin­ing home care work­ers as pub­lic employ­ees for the sole pur­pose of orga­niz­ing them in a pub­lic sec­tor union.

The state saw the union as offload­ing that pres­sure — let the rep­re­sen­ta­tives gath­er that infor­ma­tion and report to the state, and fig­ure out how to make this work,” Mar­vit says. It was a win-win: Patients got care, there were reg­u­la­tions in place, and the state doesn’t have to bar­gain with 60,000 work­ers, but can instead bar­gain with one union.”

The mod­el was adopt­ed by 20 oth­er states, becom­ing a rare sit­u­a­tion, Mar­vit says, where the employ­ee, the employ­er and the client all had the same solu­tion.” But then, It was scut­tled by the con­ser­v­a­tive view of the market.”

In 2011, the anti-union Nation­al Right to Work Foun­da­tion took reflex­ive aim at the Illi­nois mod­el, argu­ing that the home care work­ers weren’t true pub­lic employ­ees and there­fore shouldn’t have to pay mem­ber­ship fees to cov­er the costs of union rep­re­sen­ta­tion. The com­plaint made its way to the Supreme Court as Har­ris v. Quinn. The court ruled against Illi­nois, crit­i­cal­ly threat­en­ing the finan­cial sur­vival of unions by allow­ing free rid­ers”: work­ers who ben­e­fit from union nego­ti­a­tions but don’t pay for their share of its ser­vices. The case like­ly fore­shad­ows a num­ber of broad­er anti-union law­suits to come, attack­ing teach­ers and oth­er pub­lic sec­tor unions, but its impact was imme­di­ate­ly felt by home care work­ers, who have only recent­ly begun to win improved work­place conditions.

To crit­ics like jour­nal­ist Kath­leen Geier, a pub­lic pol­i­cy researcher who focus­es on women’s eco­nom­ic equal­i­ty, writ­ing at The Nation, it was an exam­ple of con­ser­v­a­tive jus­tices under-cut­ting the progress of a mar­gin­al­ized, female work­force: structur[ing] care work in a way that ensures the con­tin­u­ing eco­nom­ic inequal­i­ty of those who per­form it.”

In the wake of the deci­sion, there has been intense dis­cus­sion about how home care work­ers should move for­ward. Some states have float­ed the pos­si­bil­i­ty of state-run com­mis­sion­er boards that would func­tion as a gov­ern­ment-fund­ed union for the pur­pose of orga­niz­ing home care work­ers. But some advo­cates are look­ing to a more rad­i­cal mod­el already work­ing in a few cor­ners of the country.

Surpin saw the opportunity for a different sort of model, where workers would receive better training, wages and benefits, and would help decide the direction of the company.
The co-op model

In 1985, Rick Surpin found­ed Coop­er­a­tive Home Care Asso­ciates (CHCA), a work­er-owned coop­er­a­tive based in the South Bronx in New York City. At the time, the mar­ket for elder care was shift­ing away from nurs­ing homes toward home-based care, with patients demand­ing alter­na­tives to nurs­ing homes, and pay­ers rec­og­niz­ing it as a cheap­er option.

It was a time,” says CHCA’s cur­rent pres­i­dent, Michael Elsas, when peo­ple opened up home care com­pa­nies with the ease that they opened can­dy stores.” But the work­force, then as now pri­mar­i­ly com­posed of poor women and women of col­or, was bad­ly paid and poor­ly trained. Many of the new agen­cies seemed more focused on sim­ply ful­fill­ing a num­ber of care hours than pro­vid­ing high-qual­i­ty care.

Surpin saw the oppor­tu­ni­ty for a dif­fer­ent sort of mod­el, where work­ers would receive bet­ter train­ing, wages and ben­e­fits, and would help decide the direc­tion of the company.

The idea was to gen­er­al­ly raise the bar,” explains Elsas, with the notion that if you cre­at­ed a qual­i­ty job, you’d pro­vide qual­i­ty care.”

Near­ly 30 years lat­er, CHCA is the largest work­er co-op — in any indus­try — in the Unit­ed States, with more than 2,000 mem­ber-own­er home care work­ers and an office staff of 100, all in New York City. And unlike the staff turnover rate in typ­i­cal home care agen­cies, which can be as high as 40 per­cent each year, at CHCA, it’s just 15 per­cent.

Look­ing at CHCA’s mod­el, it’s easy to under­stand why. From the begin­ning of the coop­er­a­tive, CHCA work­ers out­earned their peers at oth­er agen­cies, receiv­ing not just high­er wages but also div­i­dends from com­pa­ny prof­its. CHCA kept man­age­ment costs low, mean­ing that 87 cents of every rev­enue dol­lar went back to employ­ees in wages, ben­e­fits, div­i­dends or bonus­es (com­pared with 80 cents at most home care agen­cies, CHCA estimates).

CHCA didn’t stop at rais­ing the bar for its own employ­ees, but rather helped lead the fight in New York City and the state to raise com­pen­sa­tion for home care work­ers across the indus­try, from an aver­age of $8 per hour to $10, plus the equiv­a­lent of $4.09 in benefits.

Econ­o­mist Jes­si­ca Gor­don Nem­b­hard, a pro­fes­sor of com­mu­ni­ty jus­tice and social eco­nom­ic devel­op­ment at John Jay Col­lege of Crim­i­nal Jus­tice in New York City and author of Col­lec­tive Courage: A His­to­ry of African Amer­i­can Coop­er­a­tive Eco­nom­ic Thought and Prac­tice, doubts that the indus­try in New York would have changed with­out CHCA’s lead­er­ship. I don’t think indus­try lead­ers were that unhap­py with the old mod­el,” she says. The peo­ple run­ning the com­pa­nies were still mak­ing mon­ey. I think it took hav­ing a group, a co-op, with a dif­fer­ent struc­ture and a dif­fer­ent mis­sion, to seed that change in the industry.”

While the wage advan­tages pro­vid­ed by the co-op may have recent­ly lev­eled out thanks to the wage par­i­ty mea­sures CHCA helped achieve, the ben­e­fits of work­ing at the co-op go beyond bet­ter pay. CHCA guar­an­tees grad­u­ates of its train­ing pro­gram a full-time job of at least 30 hours a week, trans­form­ing jobs that were con­tin­gent and tem­po­rary to sta­ble posi­tions with ben­e­fits. Work­ers serve on and vote for the board, and a labor-man­age­ment team meets reg­u­lar­ly to antic­i­pate work­er needs. And vital­ly, in an indus­try where most jobs are dead-ends, CHCA has a job lad­der to help home care work­ers move up in the com­pa­ny; 40 per­cent of CHCA’s office staff are for­mer home care workers.

Diane Holmes, a 64-year-old employ­ee of CHCA, may not have need­ed an entice­ment to stay in the field. She worked for 27 years at anoth­er Bronx home­care agency, which was also union­ized, until it closed in 2008. But while she liked her old agency, she says that CHCA seems more invest­ed in pro­vid­ing ser­vices to employ­ees. CHCA has host­ed bank­ing infor­ma­tion booths and lan­guage class­es for employ­ees who want to improve their Eng­lish. There are health fairs where work­ers can go booth to booth, get­ting test­ed for cho­les­terol, get­ting flu shots or even mam­mo­grams, on site — a sig­nif­i­cant advan­tage for busy, exhaust­ed work­ers, who reg­u­lar­ly work 10-hour days.

Board meet­ings and town halls have done a lot to help var­i­ous depart­ments at CHCA under­stand and appre­ci­ate each other’s jobs, Holmes says, and the pres­i­dent is more hands-on and acces­si­ble, some­one you can stop in the hall to talk or raise concerns.

A lot of oth­er agen­cies say, What are you doing here that makes such a big dif­fer­ence?’ ” she says. It makes a big dif­fer­ence when you can go to the own­ers of the com­pa­ny and talk as freely as you would with a coworker.”

Holmes has become more hands-on as well. At CHCA, she has served on sev­er­al com­mit­tees, help­ing to over­see safe­ty and quality.

While CHCA work­ers are still iso­lat­ed, each work­ing in the field rather than a com­mon work­place, we do a lot to give the work­ers a sense that this is your com­pa­ny even if you don’t come here every day,” explains Elsas.

The thing we haven’t been able to mea­sure is how our work­ers pro­vide bet­ter care than oth­er work­ers,” he con­tin­ues. It’s a chal­leng­ing accom­plish­ment to track, but both Elsas and Nem­b­hard are con­fi­dent that CHCA does pro­vide bet­ter qual­i­ty, since bet­ter jobs and low­er turnover in this field almost auto­mat­i­cal­ly lead to bet­ter, more con­sis­tent care.

Giv­en all of CHCA’s suc­cess­es, it’s sur­pris­ing that its mod­el hasn’t been repli­cat­ed more broad­ly. Nem­b­hard only knows of two oth­er home care co-ops in the Unit­ed States: one in Philadel­phia, and a small­er, more rur­al co-op in Wisconsin.

Elsas says that many of the lessons of CHCA’s suc­cess aren’t nec­es­sar­i­ly lim­it­ed to coop­er­a­tive work­places. You don’t have to be a co-op to be a good employ­er,” he says. It’s not that I don’t believe in co-ops any­more. But I do think that our goals and mis­sion can be repli­cat­ed, and can be attained in a non – co-op envi­ron­ment. And I think that the indus­try in gen­er­al is begin­ning to under­stand that.”

Despite the resis­tance to home care work­ers’ rights seen in the recent Har­ris v. Quinn deci­sion, the real­i­ties of the com­ing home care labor short­age and the expo­nen­tial growth in demand may make the next few years a moment of unique oppor­tu­ni­ty: a win­dow when the inter­ests of clients, pay­ers, work­ers and man­agers all align around the real­iza­tion that the future of this impor­tant indus­try lies in mak­ing the work more sustainable.

So many of us are wor­ried about our par­ents and where they’re going to go, and who will take care of them,” says Nembhard.“We want good peo­ple. What co-ops are sell­ing to clients is sta­bil­i­ty and longevi­ty in their caretakers.”

Apply­ing the coop­er­a­tive for­mu­la to rur­al areas may present more of a chal­lenge. Tra­cy Dudzin­s­ki of Coop­er­a­tive Care in Wis­con­sin says that demand for the co-op’s ser­vices is high but work­ers are in short sup­ply, espe­cial­ly those will­ing to invest the ener­gy to get a co-op off the ground. Trav­el dis­tances are also a prob­lem: It is not unusu­al to send some­one 30 miles to do a one-hour shift for a show­er,” says Dud­kin­s­ki. How­ev­er, she’s still con­fi­dent that the co-op mod­el lends an advantage.

In my parent’s case, their long-time aide, Shirley, was able to return to work in Feb­ru­ary, and for now, life has gone, more or less, back to nor­mal. But it feels like a tem­po­rary reprieve: Shirley is in her mid-60s, and one day she’ll have to retire. For the sake of my fam­i­ly, I hope it’s at a point when the rules of the broad­er home care indus­try have start­ed to change — a point when bet­ter jobs and greater respect are draw­ing a flood of good new work­ers to the field.

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