Excluded & Frozen Out: Unauthorized Immigrants’ (Non)Access to Care after U.S. Healthcare Reform

Helen B. Marrow Tufts University

&Tiffany D. Joseph

Stony Brook University

Friday Morning Seminar in Medical AnthropologyMIT, Cambridge, MAFebruary 20, 2015

Overview of the ACA

Signed into law in 2010

Individual mandate

Medicaid expansion

Health exchanges

Imperfect implementation

Excludes many immigrants•71% unauthorized adults uninsured in 2011—16% of the total uninsured (Capps et al. 2013)

President Obama signing ACA

The ACA & Boundary Brightening

Boundaries in sociology (Lamont and Molnar 2002; Alba 2005; Wimmer 2008, 2013)

•Us versus Them•Symbolic versus Social boundaries•Bright versus Blurred boundaries

Boundary-making & change•Brightening: Boundary becomes more salient & visible•Expansion/shift: New people are included in a group from which they were previously excluded

ACA “brightening” the boundary btw unauthorized immigrants & the “deserving” American body politic

In his presidential address before the joint session of Congress on September 10, 2009,

President Obama presented key aspects of

the ACA. When he explicitly stated that

unauthorized immigrants would be excluded from

the policy, South Carolina Congressman Joe Wilson famously

interrupted him, retorting, “You lie!”

*****The outburst symbolized

Wilson’s and the American public’s

dominant construction of unauthorized immigrants as illegal, immoral, and

undeserving outsiders to the American body

politic.

Boundary Blurring and Brightening

in 2010Healthcare options:

Private insurance via private employment (very $)Pay out-of-pocket (very $)Forego careSelf-medicateInformal providers & alternative medicines (incl. abroad)Rely on the “categorically unequal” safety net (Light 2012)

FQHCs (+ $ under ACA)

EDs (- $ DSH funding under ACA)

Boundary Blurring and Brightening

Alternate Possibilities?New trends in immigration & integration policy

•Devolution of responsibility to subnational & nongovernmental actors + “grassroots” interest rising from below (states & localities)•Comparative institutional context of integration model (Crul and Schneider 2010)

Recategorization” into local sense of “we” (Matthew 2012)

SF: N=54 Interviews with “Street-Level Bureaucrats” (Summer 2009)

“Hospital Outpatient Clinic” (HOC)

N=365 Physicians7 Residents8 Registered Nurses3 Nurse Practitioners7 Medical Exam. Assistants4 Clerical staff1 Social worker1 Health worker

Some External Contextualization

N=16Other internal hospital clinics / departments

•Incl. 2 eligibility workers

Nearby Latino-oriented FQHC

Nearby Latino-oriented day-laborer free clinic

MA: N=70 Interviews with Patients, Providers, & Leaders (2012-2013)

Latin American Immigrants (N=31)

Brazilians ( N=21)Dominicans (N =10)- Health Coverage- Healthcare Access- System Experiences- Migration

Experiences- Transnational Health

Immigrant Org. Leaders (N=19)

Brazilians (N=6)Dominicans (N=2)

Miscellaneous (N=11)

- Immigrant Health issues

- Migration Experiences

- Immigration Policy- Local Context: Boston

Healthcare Staff (N=20)

- Immigrant Patients- Institutional Barriers- System Navigation- Immigrant Health Issues

Robust & highly-integrated public/nonprofit safety net• SF identity: leading edge of progressive social change• Public providers: local DPH salaries

Protective environment for ~40,000 undocumented

• Active sanctuary policy in Administrative Code since 1989

• Municipal ID ordinance since 2009

Ostensible universal healthcare “access”• San Francisco Healthy Kids (SFHK) initiative since 2002• Healthy San Francisco (HSF) ordinance since April 2007

Offers most preventive/primary care services (some specialty) In HSF-participating institutions (mostly in safety net) About making access to safety net more integrated, efficient, &

oriented toward primary care (not about cost-savings)

Health Safety Net(state-funded access to the

safety net)(low-income; unauthorized &

anyone else left uninsured post-reform)

Mass Health(Medicaid/SCHIP programs)

(low-income; must be documented, but no 5-year

residency requirement)

Commonwealth Care(private insurance subsidized

via health exchange)(middle-income; must be

documented, but no 5-year residency requirement)

2006 Massachusetts Health Reform (Chapter 58)

Private Insurance(high-income)

Recategorization:Greater Symbolic & Social InclusionAllows providers to not think about legal status, & to marshal resources more effectively Mary (SFGH physician , San Francisco): “We often don’t know [legal status] because we are very lucky here in having no [constraints placed on us] for anything we can provide on site [at this hospital] to anyone who lacks health insurance. And then the city has a contract that they can pay for certain things [at another nearby hospital] that we can’t offer here.”

Facilitates buffering & advocacyLynne (SFGH NP, San Francisco): “I really do encourage people. ‘It’s okay. You’re not going to get arrested. You’re not going to get deported just because you’re seeking health care. You can use your real name.’ Or, ‘If you’re really scared, go to the refugee clinic.’ Or I’ll try to send them to the social worker to get some referrals to a Spanish-speaking advocacy agency where they can get reassurance if that’s what they need.”

Formal Barriers to “Uncovered” Specialty & Ancillary ServicesBlocked access by legal status quickly emergesMary (SFGH physician, San Francisco): “[My patient] is someone who by like every criterion would get a liver transplant. She’s socially stable, she’s married, she’s adherent to absolutely everything that you ask her to do, there’s like nothing wrong. And I asked the liver specialist here to see her [but] as soon as they found out she didn’t have papers it was like very clear. So she’s alive and she’s doing okay but she is not eligible for a [liver] transplant, like it literally can’t be done. That’s just a devastating conversation to have [with a patient].”

“And so when I sent a patient to the social workers, I asked them, “Is there any miracle we can pull off here [hooking him up to unemployment or disability benefits]?” And they basically said “No.” And at this point, you know, the city’s about to pay $100,000 to get an ICD [implantable cardioverter-defibrillator] implanted in him [for cardiac arrythmia]. So it’s hard. We work to send him to the food bank and stuff, but he’s basically losing his housing and it’s just a mess. He wound up having to send his children, who are American-born and are U.S. citizens, and his wife back to his home country, because he can’t afford to keep them fed or anything. He’s someone who, because he can get this procedure, should be able to recover, be a productive member of our society, and be able to raise two kids who will be, too. But there’s nothing we can do right now. And so I would say that our hands get tied for those kinds of things.”

Informal and/or Bureaucratic BarriersInternal paperwork requirements a deterrent to careCatarina (SFGH RN, San Francisco): “Even if HSF and [this hospital] may not do anything with that information, if you’re undocumented and you know that there's a possibility you could get deported, there is wariness to submit all this documentation or have to come up with it. So, it may not be meant as a barrier but it definitely is serving as one.”

Leticia (Brazilian Immigrant Center, Boston): “Going to the doctor means giving your name, your address, you know, disclosing that you're in this country and that is the first big barrier for most people to get treated. And they only go when they have to. So it's real hard to follow up on some, you know, preventive care... And when they hear that word “social security”, all bets are off. People will freak out. Many places, you have to provide a valid ID to get any kind of care too. If you don't have that valid ID and you are not dying, they won't even see you.

External enforcement/policing a deterrent to careMarcus (Community Worker, Boston): One of the anecdotal stories is a guy, and I think he was coming here, they [healthcare providers] called him up and they said your blood work is really bad. You have to come in right away. He drives 45 minutes, pulls on to Somerville Avenue which was being totally torn up and repaired, filled with Somerville cops, hanging around having coffee on their detail. They [police] could care less who’s driving by, but he sees all those police, he turns around and goes home which is the rational thing to do but it just mitigates against doing anything.

Whither the Great “Unfreeze”?Recategorization” into local sense of “we” (Matthew 2012)

•But still as “least” deserving•Formal & informal/bureaucratic barriers remain•Ultimately “place-bound & limited” (de Graauw 2012)•Exclusion by policy design, not just implementation/resistance

Those remaining more visible & vulnerable?Boston Health Alliance Physician: “I suspect that a whole bunch of [the unauthorized] have left [the national system]. And the major leaving in our [MA] situation was the [2006] health care reform because what happened was that the Free Care pool […] the state funds to pay for people who didn’t have insurance […before 2006] healthcare reform, that included everyone – small business owners, whole mass of students, or people just out of college who didn’t have jobs, as well as [the] undocumented. So everyone was bunched. The undocumented group was bunched together with other people. With [2006 MA] health care reform and [2010 ACA] Obamacare, now naturally what it’s going to do is it pulls those people out so it makes the Free Care pool [the remaining funding to the uninsured] much smaller and more likely [to be] the undocumented, and it’s much easier to cut them off.”