Caring for Workers Who Care for Our Loved Ones

Michelle Chen August 17, 2013

At a June 2012 New York Care Congress at Pace University, care workers came together with community members to discuss how to 'create quality, dignified care for all.' (Photo from ALIGN NY)

For many seniors, grow­ing old­er means fac­ing new kinds of stress — such as frag­ile health, a tight bud­get on a fixed income, or the tra­vails of liv­ing alone.

And for the peo­ple who care for the aging, the stress can be just as severe. When her client is going through a rough time, one domes­tic work­er says she lives through every minute of it, too: Some­times we stay there for five days…and we don’t know what’s outside…You can­not leave the job.”

Sto­ries like this one, record­ed as part of a sur­vey of New York’s care work­ers, form the invis­i­ble pil­lar of an evolv­ing indus­try that is mak­ing the pri­vate home the cen­ter of pub­lic health, and in the process, reshap­ing our rela­tion­ships of fam­i­ly, work, com­mu­ni­ty and social ser­vice. Yet the home care work­force, which is dri­ven large­ly by poor women of col­or, mir­rors inequities embed­ded in the low-wage econ­o­my. At work, care­givers man­age the lives of our loved ones while often fac­ing exploita­tion and abuse, and after a long day of deliv­er­ing com­fort to vul­ner­a­ble clients, many strug­gle them­selves to cope with ingrained pover­ty their communities.

To open a con­ver­sa­tion about the eco­nom­ics and ethics of care­giv­ing, ALIGN (Alliance for a Greater New York) has partered with the nation­al advo­ca­cy cam­paign Car­ing Across Gen­er­a­tions, along with var­i­ous com­mu­ni­ty and labor groups, to study New York City’s more than 150,000 home care work­ers. The sur­veys and inves­ti­ga­tions pub­lished by ALIGN reveal struc­tur­al prob­lems in the indus­try and iden­ti­fy poten­tial for reforms that work for those who give and those who receive care.

In New York, the home care indus­try is boom­ing as more seniors opt to live at home rather than in insti­tu­tions. Thou­sands across the city earn their liv­ing by tak­ing care of seniors and peo­ple with dis­abil­i­ties. Over­all, accord­ing to the study, the sec­tor will be the sin­gle biggest dri­ver of employ­ment in the city in the com­ing years.”

On a typ­i­cal day in New York, these work­ers, most­ly women of col­or and immi­grants, act as both ther­a­pists and com­pan­ions, man­ag­ing med­ica­tions, bathing and feed­ing, and help­ing seniors feel dig­ni­fied even on the days they can’t get out of bed. On top of this, the work­ers have to nego­ti­ate with stressed fam­i­lies about hours and pay – and typ­i­cal­ly take home low wages that keep them and their fam­i­lies mired in poverty.

And yet it turns out that con­sumers and providers of care want the same things. ALIGN’s sur­veys of New York­ers, includ­ing both care­givers and care con­sumers,” show strong con­cern about decent pay for work­ers, along with retire­ment and health­care ben­e­fits. These labor con­di­tions are many cas­es dic­tat­ed by insur­ance com­pa­nies and Med­ic­aid, not by the fam­i­lies receiv­ing care.

The fact that con­sumers and care­givers both rec­og­nize that labor should be fair­ly val­ued real­ly does chal­lenge this zero-sum notion that good jobs and afford­able care can’t coex­ist,” says ALIGN pol­i­cy ana­lyst Maya Pin­to. And it sug­gests that peo­ple under­stand the con­nec­tion between the qual­i­ty of care and the qual­i­ty of jobs.”

The con­verse is also true: When work­ers are mis­er­able, it shows up in their work. Near­ly 40 per­cent of peo­ple receiv­ing care com­plained that the qual­i­ty of ser­vices was fair” to very poor.”

But from a work­ers’ stand­point, this is the con­se­quence of a job that treats them poor­ly. One work­er described her sit­u­a­tion blunt­ly: It is a very dif­fi­cult job at times because there are patients who think the home care work­ers are slaves.” Work­ers report­ed being sub­ject to ver­bal and phys­i­cal abuse, some­times racial slurs, on the job.

Nonethe­less, many care work­ers feel deep devo­tion to their job — they just want to their labor to be appre­ci­at­ed and duly com­pen­sat­ed. I do my work well…and the per­son I care for is very sat­is­fied with my work,” said one work­er. It is very dig­ni­fied work but it needs to be paid better.”

A pri­or­i­ty across all respon­dent groups was pro­vid­ing appro­pri­ate train­ing and mon­i­tor­ing – indi­cat­ing that work­ers, con­trary to stereo­types, are not instinc­tive­ly resis­tant to greater account­abil­i­ty and over­sight, and that all stake­hold­er groups real­ize the depth and com­plex­i­ty of respon­si­bil­i­ties involved in car­ing for vul­ner­a­ble seniors.

One area of diver­gence between con­sumers and work­ers was the impor­tance placed on career advance­ment. The issue was a high­er pri­or­i­ty for care­givers, espe­cial­ly domes­tic work­ers who serve seniors but lack the offi­cial cre­den­tials of for­mal sec­tor” work­ers — a cat­e­go­ry that includes cer­ti­fied home health aides” and home atten­dants,” and who are gen­er­al­ly employed through an agency. Lack­ing the for­mal qual­i­fi­ca­tions asso­ci­at­ed with spe­cial­ized, bet­ter-pay­ing posi­tions, domes­tic work­er-care­givers (who are dis­pro­por­tion­ate­ly low-income immi­grant women, both doc­u­ment­ed and undoc­u­ment­ed) often remain stuck in the most gru­el­ing, pre­car­i­ous jobs.

Some of New York’s pri­vate­ly employed home care work­ers ben­e­fit from a recent­ly enact­ed domes­tic work­ers’ Bill of Rights” that pro­vides stronger work­place pro­tec­tions and wage stan­dards than does fed­er­al labor law. How­ev­er, domes­tic work­ers over­all, who include nan­nies and house­keep­ers as well as direct care­givers in pri­vate house­holds, still suf­fer from pover­ty, dis­crim­i­na­tion and exploita­tion. Accord­ing to ALIGN’s sur­vey of care­givers’ house­hold incomes, about nine in 10 domes­tic work­ers earn less than $25,000 annu­al­ly, com­pared to six in 10 for­mal sec­tor work­ers. That is, despite the strides that domes­tic work­ers made with the Bill of Rights, in mate­r­i­al terms, they still lag behind those employed through agen­cies or with more for­mal credentials.

ALIGN rec­om­mends sev­er­al reforms to ensure dig­ni­ty for both care­givers and peo­ple receiv­ing care. More train­ing and cer­ti­fi­ca­tion options – such as pro­grams equip­ping domes­tic work­ers with emer­gency med­ical skills – would expand work­ers’ access to more for­mal and high­er-pay­ing posi­tions and lift up stan­dards for the work­force over­all. On a pol­i­cy-mak­ing lev­el, the report calls for a expan­sion of pub­licly fund­ed insur­ance pro­grams so care work­ers, many of whom can­not afford med­ical cov­er­age, can safe­guard their own health as they care for others.

Since so many fam­i­lies strug­gle to pay the cost of com­mu­ni­ty-based elder care, espe­cial­ly if they fall out­side the income-eli­gi­bil­i­ty brack­et for Med­ic­aid, the report rec­om­mends a more com­pre­hen­sive pub­licly sup­port­ed insur­ance pro­gram as an alter­na­tive to pri­vate long-term care plans. Not­ing that the cur­rent roll­out of the Afford­able Care Act and Med­ic­aid over­haul present an oppor­tu­ni­ty for fuda­men­tal reforms in home care fund­ing, ALIGN sug­gests cre­at­ing a broad­ly acces­si­ble long-term care ben­e­fit that would be fund­ed through pay­roll con­tri­bu­tions, like Social Security.

The report also high­lights why work­ers need not just laws but orga­ni­za­tion and col­lec­tive bar­gain­ing pow­er. In recent years, SEIU and the Nation­al Domes­tic Work­ers Alliance have orga­nized tens of thou­sands of work­ers to win fair­er con­tracts for work­ers and to press for reforms to extend labor pro­tec­tions for care work­ers. Mean­while, some work­ers are chang­ing how care is deliv­ered in their com­mu­ni­ties by form­ing their own cooperatives.

ALIGN cites the work­er-owned coop­er­a­tive mod­el as a sys­tem that can empow­er care­givers, by enabling them not only to share in the own­er­ship and prof­its of the enter­prise but also to access train­ing, nego­ti­ate bet­ter work­ing con­di­tions, and improve com­pen­sa­tion for work­ers while keep­ing the cost of care rel­a­tive­ly low.” One impres­sive case study is New York’s Coop­er­a­tive Home Care Asso­ciates, one of the coun­try’s lead­ing coop­er­a­tives with about 2,000 work­ers, half of whom own a part of the business.

Despite the some­times harsh con­di­tions, Vil­ma Rozen, a 52 year-old home care work­er, remains unshak­ably devot­ed to her job and embraces the chal­lenges. If you want to take care of elder­ly peo­ple, you have to keep your feel­ings very in touch [with] the per­son, because the elder­ly peo­ple in some cas­es are very alone and very depend[ent],” she says. At the same time, she adds, many seniors suf­fer so much, because the home-car­ers, they have a very sad life, very under­paid… They don’t have hap­pi­ness.” Rozen, a native of Cos­ta Rica, says that if Amer­i­cans want to place their elders in the care of atten­tive, ded­i­cat­ed peo­ple, they need to change the system.”

Whether they give or receive care, every­one wants dig­ni­ty – both seniors and their aides want to look for­ward to see­ing each oth­er every day in a rela­tion­ship of mutu­al respect. The labor issues in senior care show the con­se­quences of neglect­ing shared needs, but also open space for cre­at­ing a fair­er sys­tem of care, by mak­ing the home a more wel­com­ing workplace.

Michelle Chen is a con­tribut­ing writer at In These Times and The Nation, a con­tribut­ing edi­tor at Dis­sent and a co-pro­duc­er of the Bela­bored” pod­cast. She stud­ies his­to­ry at the CUNY Grad­u­ate Cen­ter. She tweets at @meeshellchen.
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