Tag Archives: insurance

Mental Illness – Fighting Stigma and Improving Access to Care

by Jennifer Swayne, Staff Attorney – Health Justice Program

On Friday, December 14, 2012, we once again faced unspeakable tragedy as a gunman broke into Sandy Hook Elementary School in Newtown, CT and opened fire, killing a total of 28 people—20 of whom were children. While many of the initial conversations surrounding this horrible tragedy focused on the ongoing debate about gun control, very few of those conversations focused on mental illness, the stigma surrounding it, and access to mental health care services. Some news sources have reported that the gunman faced mental illness, though it is not clear what, if any, mental health services he and his family may have sought in the past.  However, what is certain is that we need to engage in dialogue on mental illness, as there are many individuals who face significant stigma and who are not able to access critical mental health services consistently.

Mental illness knows no race, culture, ethnicity, language, socioeconomic status, age, gender, or religion, yet there is stigma and overwhelming silence surrounding its impact.  Many have probably encountered someone with mental illness without even realizing it, especially since about 1 in 4 adults age 18 and over, and about 1 in 5 children age birth to 18 suffer from a diagnosable mental illness at some point in their lives.  Because of the stigma surrounding mental illness, however, we continue to miss opportunities to help others get the support and assistance they need, especially when those who exhibit signs of mental illness are simply labeled and dismissed as “crazy.”  Instead, we are relegated to hindsight assessment when it is much too late to take action.

The mass shooting that happened in Newtown is an extreme, and there is nothing that excuses the actions of the gunman.  However, mental illness is much more complex than this extreme case of violence we have witnessed suggests. For instance, people with mental illness face greater risk of becoming the victim of crime rather than being the perpetrator.  Therefore, we must be careful not to let a single person’s actions symbolize our collective understanding of how mental illness manifests and operates.

Further, we have a health care system where mental health parity has been lacking, and sadly, quality mental health services remain a luxury reserved for those who have the ability to pay in cash for those services.  The result is that those who have no insurance, those who rely on private insurance with limited mental health benefits, and those who rely on public insurance often go without needed mental health services that can help them live full and productive lives. Untreated mental illness can result in homelessness, incarceration, victimization, high burden placed on families and caretakers, and productivity loss, not to mention the financial costs of healthcare expenditures resulting directly from failure to treat mental illness sooner rather than later.

New York State is in the process of redesigning its system of behavioral health services for some of the most vulnerable people in our society—low-income children from birth to age 21 who use public insurance.  This is a group that has suffered immensely from lack of adequate mental health services. Under Medicaid, the system of mental health care for children has been overwhelmingly underfunded and the New York State systems that serve children—Department of Health (DOH), Office of Mental Health (OMH), Office of Children and Family Services (OCFS), Office of Alcoholism and Substance Abuse Services (OASAS), Department of Education (DOE)—and other agencies at the local level, have not coordinated their efforts to serve children, leading to a disjointed system.

It is promising that New York State is engaging in a process to revamp the system of care for our children, but we have to make sure that it is a system that will actually work and result in real change or else children will continue to face dire consequences and suffer from the stigma of mental illness well into adulthood.  Children with mental health problems have lower educational achievement, greater involvement with the criminal justice system and fewer stable and long-term placements in the child welfare system than their peers.  In attempts to access mental health services, publicly insured children are also more likely to rely on restrictive or costly services such as juvenile detention, residential treatment, emergency rooms, and are more likely to be placed out of their homes in order to obtain critical services, as opposed to being able to readily access outpatient services, especially if they are children of color.

On December 14, NYLPI and the Children’s Defense Fund submitted joint comments (which you can access here) regarding the critical mental health services that children need to New York’s OMH, OASAS, and OCFS.  In our comments we:

(1) address the health disparities that impact receipt of mental health care;

(2) list the services that children should receive and who should provide those services;

(3) highlight the importance of cultural and linguistic competency;

(4) discuss the need for early identification and prevention measures such as behavioral health screening; and

(5) stress the need for training and funding so that providers are able to actually provide the appropriate services.

As we can see, mental illness is complex and it is not going away.  We must proactively engage in creating a better system of care rather than responding in the aftermath of tragedy. It is vital that we have honest and ongoing conversations about the state of our society, mental illness, stigma, and access to appropriate mental health care services.

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Acknowledging Difference, not Defeat: A Racial Justice Perspective on the Medicaid Debate

This post, by Health Justice Director Nisha Agarwal and Staff Attorney Shena Elrington, also appears on the Race-Talk blog, Huffington Post, and Alternet.

The federal Medicaid program has become something of a policy piñata in the national discourse. Over the course of the past year conservatives have been asking, “is Medicaid real health insurance?” The public insurance program for low-income individuals has been criticized for not providing sufficient access to physicians, long wait times to see a physician when one can be accessed, and poorer quality of care once patients get in the door – all of which conservatives argue are reasons to dismantle the program altogether. If being on Medicaid isn’t much better than being uninsured, why bother spending tax dollars on it?

Meanwhile, a recent editorial in the New York Times offered unequivocal praise for the Medicaid program, pointing to a study conducted in Oregon that allowed researchers to compare the experiences of people who received Medicaid coverage to those who did not. According to the study, Medicaid recipients reported better health than the uninsured recipients  and were less likely to have medical bills sent to  collection agencies or forgo other obligations in order to pay for their medical care. Supporters of the public health insurance plan were therefore able to hit back against conservative naysayers and argue that Medicaid truly is a program worth preserving and expanding.

While the national debate lurches back and forth, we find a more complicated reality on the ground, in the low-income communities of color where we work to eliminate race- and class-based biases in the health care system. The uncomfortable truth is that Medicaid beneficiaries do often receive poorer quality of health care, particularly when it comes to accessing specialists. But to see this you have to look at how Medicaid beneficiaries fare vis-à-vis privately insured individuals, not the uninsured, which has been the focus of current debates.

For example, in  our work with Bronx Health REACH, a faith-based community coalition in the Bronx, we have seen how Medicaid patients seeking specialty services at major New York City hospitals are seen in separate—effectively segregated—facilities from their privately-insured peers, with longer wait times, less experienced doctors, and much less continuity and coordination of care. (You can read more about these problems in this monograph published by the Bronx Health REACH coalition and in this complaint we filed with the New York State Attorney General.)

Working with low-income parents, we have also seen how children with Medicaid have to wait for grotesquely long periods of time before they can get mental health treatment and special education evaluations, if they are able to access these services at all, and how elite institutions providing such services refuse to serve publicly insured populations despite the significant shortage of pediatric mental health providers in New York City.

Our experience thus seems to support conservative arguments to some extent: Medicaid beneficiaries do not have sufficient access to physicians, experience long wait times to see a physician when one can be accessed, and suffer from poor quality of care once they get in the doctor’s door, at least when compared with those patients who are privately insured.

Undoubtedly the current climate surrounding Medicaid makes it difficult for advocates to point out the lower quality of care Medicaid beneficiaries receive, for fear that any criticism of the program will serve as powerful ammunition for the other side to use. But acknowledging certain aspects of the conservative argument need not mean that advocates have to accept the entirety of their conclusions. Something else we’ve learned through our work is that Medicaid isn’t “bad” insurance per se. Rather, healthcare providers and institutions choose to treat Medicaid beneficiaries badly by discriminating against them with respect to the quality of care provided. Consider the Bronx example. Hospitals in New York City (and elsewhere) are not only reimbursed by Medicaid for providing patient care, they also receive over $1 billion through the Medicaid program for non-patient purposes such as resident doctor training – a funding stream so substantial that the New York hospital industry is fighting tooth and nail to keep it safe from federal budget cuts. Medicaid seems to pay hospitals very well, and yet these same hospitals choose to provide segregated and unequal care to Medicaid beneficiaries. Why?

As with many things, these bizarre dynamics cannot be understood without accounting for race, and for the fact that the vast majority of publicly insured individuals in New York City are black and brown. We have heard how top-flight specialists want to be able to choose the patients that they treat, which is invariably code for avoiding people of color who are perceived to be more “complicated” and “non-compliant.” Elite NYC hospitals eager to attract these specialists happily comply to doctors’ demands by giving them fancy facilities to see their preferred patients, while the Medicaid patients are separated out into “clinics”, where they are treated by a rotating band of doctors-in-training.

In addition to wanting to attract renowned specialists, the hospitals want to attract the “right” kind of patients – that is, wealthy, white, suburban patients. Behind closed doors administrators will openly argue that their “‘paying’ patients will not want to sit in the same waiting room as people on Medicaid,” so it is simply better for the hospital to segregate the two groups.

Worse still, these biases become a part of the culture of how medicine is taught, with students and residents working with Medicaid patients in the clinics learning very early on that some patients—the kinds of patients they get to practice on, the poor patients of color—are less worthy than others. Indeed, research has suggested that by the end of their medical education, student doctors actually become more biased than they were when they began medical school. These biases, whether conscious or not, permeate the medical system at both an individual and systemic level, affecting the quality of care that Medicaid beneficiaries receive.

From our perspective, the debate about Medicaid is less about left-and-right and more about black and white. The conservatives’ sleight of hand is to point to quality of care problems for Medicaid beneficiaries and to jump from there to the conclusion that the Medicaid program is to blame, which obscures the mediating role that institutional racism plays in ensuring poor outcomes for Medicaid patients. Meanwhile, supporters of Medicaid effectively erase race from the debate as well by closing their eyes to the many challenges Medicaid beneficiaries face in accessing high-quality health care, despite the fact that they are walking in the door with an insurance that research shows is pretty good. A more nuanced position would acknowledge differences in care without accepting defeat. It is not the Medicaid program that must be dismantled, but the biased attitudes and policies that lead Medicaid patients to get inferior quality of care.

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Action Alert: Email the MRT

In response to the hurried and flawed process used to develop proposals for New York Medicaid redesign, the Save Our Safety Net-Campaign asks allies to send emails to members of the Medicaid Redesign Team (MRT) expressing our distaste with their decision making process.

Sample text and email addresses of MRT members are below.


Subject: Disappointed with Medicaid Redesign Process

Sample text:

“Medicaid Redesign Team –

We are saddened and angered by the “rush to judgment” on February 24th in the vote of the Medicaid Redesign Team to approve a package of recommendations that you had in your hands for less than 24 hours.  There had been major changes in what recommendations you were being asked to vote on, yet you voted.  The information was just made available on the web site the same day as the vote.  The aborting of the time frame by five days meant the public had no opportunity to review, digest, and comment on this package – much of which will have a dramatic impact on people’s lives.

The process had so many flaws that it would be difficult to name all of them.  But while trying to appear as this was a public transparent process, in the end it was anything but open and public.  To cite just one “mistake”, Mr. Introne acknowledged publicly at the meeting on February 24th that people who had been listed in support of proposal #67, had actually spoke in opposition to this proposal.  #67, or Berger 2, would make money available to close, consolidate or merge hospitals, nursing homes, and clinics and was actively supported by Ken Raske (GNYHA) and Stephen Berger.”

Email addresses of MRT members:

Ann Monroe<amonroe@chfwcny.org>;Arlene Gonzalez-Sanchez<arlenesanchez@oasas.state.ny.us>;Joe Giglio (Assembly)<giglioj@assembly.state.ny.us>; Assemblyman Richard N. Gottfried<gottfried@assembly.state.ny.us>; Carol Raphael<craphael@vnsny.org>; DanSisto<dsisto@hanys.org>; Dennis Rivera<drseiu@aol.com>; Dr. JeffreySachs<jsachs@sachsmessage.com>; Nirav Shah<nrs02@health.state.ny.us>; Dr. William Streck<william.streck@bassett.org>; Ed Matthews<ematthews@ucpnyc.org>; Eli Feldman<efeldman@mjhs.org>; Elizabeth Swain<eswain@chcanys.org>; Frank Branchini<fbranchini@emblemhealth.com>; GeorgeGresham<georgeg@1199.org>; James Introne<James.Introne@exec.ny.gov>; Jason Helgerson<jah23@health.state.ny.us>; Karen Ballard<kballard@nyc.rr.com>; Ken Raske<raske@gnyha.org>; Lara Kassel<lkassel@cdrnys.org>; Linda Gibbs<lgibbs@cityhall.nyc.gov>; Lisa Ullman<Lisa.Ullman@exec.ny.gov>; Max Chmura<max.e.chmura@omr.state.ny.us>; MikeDowling<mdowling@nshs.edu>; Mike Hogan<cocomfh@omh.state.ny.us>; RobertMegna<Robert.Megna@budget.state.ny.us>; Kemp Hannon (Senate)<hannon@nysenate.gov>; Thomas Duane (Senate)<duane@nysenate.gov>; SteveAcquario<sacquario@nysac.org>; Steve Berger<sberger@odysseyinvestment.com>

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Mount Sinai’s Tisch Cancer Institute: New Building, Same Walls

This post is by Alyssa Aguilera, NYLPI’s Health Justice Community Organizer.

Late last month I attended my first Mount Sinai Community Roundtable – a monthly convening of various community stakeholders interested in the happenings of the Harlem-based academic-medical center. These meetings, according to Mount Sinai’s own Community Service Plan, are held to “keep its pulse on the needs of the East Harlem and Central Harlem communities”. A worthy effort indeed, I was interested to see how the hospital would approach the invariably difficult town-gown relationship between a highly-touted medical center and its surrounding neighborhood, which despite proximity still remains a medically underserved community.

Last month’s meeting was to focus on the new Tisch Cancer Institute – “a state-of-the-art, patient-oriented, comprehensive cancer and research facility” slated to open in early 2011. On hand to explain the Institute was its director Dr. Steven Burakoff who led the group through a presentation highlighting the research, education, and care that would be provided at the Institute.

Funded in part by a $40 million gift from James and Meryl Tisch, the construction of the Institute is part of a larger expansion plan currently in motion at Mount Sinai. This initiative, led by Mr. Tisch, is being called The Campaign for Mount Sinai and is an aggressive and ambitious capital campaign aiming to raise $1 billion in private donations to improve the entire medical center.

What I found quite interesting in both the presentation and when perusing the Mount Sinai website, was the emphasis on “translational medicine” and the creation of “institutes” where this practice will be honed. Translational medicine, although multi-faceted, basically promotes the idea that “new treatments and research knowledge [should] actually reach the patients or populations for whom they are intended and [be] implemented correctly.”[1] So for example, the Tisch Cancer Institute will house both the research and treatment of cancer allowing for mutual access between researchers, practitioners, and patients that will hopefully produce accelerated positive results for all those involved.

Mount Sinai is planning to create institutes for 14 different medical areasThe Black Family Stem Cell Institute, Friedman Brain Institute, Experimental Therapeutics Institute, etc. – and all are part of this ten-year expansion project.

In addition to the presentation on the Tisch Cancer Institute, the community roundtable also featured Professor Lina Jandorf, Director of Cancer Community Outreach in the Department of Oncological Sciences. She spoke about her work to reduce ethnic and racial disparities by improving education, screening and treatment protocols for communities of color in Harlem. Her own research emphasizes the need for this type of work. She writes:

Cancer mortality and incidence rates among minorities in [East Harlem] are 30% higher than elsewhere in New York City (NYC). For example, prostate and colorectal cancer incidence among adults aged 45-64 years living in this community is significantly higher than the average for NYC. Women in [East Harlem] are diagnosed with breast cancer at later stages of disease than are women from other NYC neighborhoods. Malignant neoplasms are the second leading cause of death in [East Harlem] after heart disease, with an age-adjusted rate of 147 per 100,000 when compared with 91 per 100,000 for the rest of NYC.[2]

The lack of access to cancer prevention and treatment in low-income communities of color is unfortunately no surprise and I am happy to see that Ms. Jandorf and her colleagues at Mount Sinai are engaging in programming to help understand and ameliorate this somber public health reality. However, the lingering question I had throughout the presentation, and asked of Dr. Burakoff and Ms. Jandorf themselves, was this: It is great that the Tisch Cancer Institute is being constructed in a community so desperately in need of the care it provides, but what is Mount Sinai doing to grant access to the Institute for their neighbors many of whom are on Medicaid, are under-insured, or uninsured?

Their answer was not as straight-forward as I would have liked. They mostly just pointed to the community programs that are already available to the public. Dr. Burakoff said something interesting though, he said that as a hospital once they screen patients and detect cancer they have a responsibility to treat them. A vague answer, but I can assume that if the Institute had any plans to actually screen and treat low-income patients, they would have mentioned it at that time. Though just to be sure, I called a few days after the presentation to inquire about breast cancer treatment for a Medicaid beneficiary and was told they could be seen in the clinic setting, not the Institute itself.

So it seems more than likely that Mount Sinai will continue to deny access for low-income patients to the highest quality of care their facilities provide. They will regulate low-income patients to the clinic system, where they will get a lower quality of care (more on our work to end the two-tiered system of care in NYC academic-medical centers here), and the staggering health disparities in communities of color like East and Central Harlem will persist. Undoubtedly though, these new initiatives by Mount Sinai will allow them to rise in the ranks as one of the “best” hospitals in the country – well, for those who are lucky enough to have good private insurance.

Funny enough, Mount Sinai’s expansion project and institute model is all about breaking down walls: between the hard sciences and clinical medicine, between clinical medicine and patient outcomes, and between specialty areas in an attempt to tackle comorbidities often present in patients with chronic illness.

But despite millions of dollars, the recruitment of top faculty, and state-of-the art facilities, one big wall will still remain for low-income New Yorkers seeking cancer treatment at the Tisch Cancer Institute – the ability to afford it. And sadly, this treatment is one thing many New Yorkers cannot afford to live without.

[1] Woolf, Steven H., MD, MPH. “The Meaning of Translational Research and Why It Matters.” Journal of the American Medical Association 299(2) (2008): 211-3.

[2] Landorf, L and Fatone, A. and Borker, P.V. (2006) Creating alliances to improve cancer prevention and detection among urban medically underserved minority groups: The East Harlem Partnership for Cancer Awareness. Cancer. 107 (8). pp. 2043-2051.

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Leaving Undocumented Immigrants Behind

This post is by Shena Elrington, Staff Attorney and Simpson Thacher & Bartlett Public Interest Fellow in the Health Justice Program at NYLPI.

On March 23, 2010, President Obama signed the Patient Protection and Affordable Care Act into law.  The legislation represents the most sweeping reform of the American health care system since the New Deal.  Although the legislation calls for nearly universal health coverage – reducing the number of the uninsured by 32 million by 2019,  it fails to extend such coverage to undocumented immigrants, creating a large coverage gap that will inevitably strain the burgeoning health care system.

The new legislation prohibits undocumented immigrants from purchasing private health insurance in newly formed state exchanges at full costs and receiving premium tax credits or cost-sharing reductions to help purchase insurance.  Notwithstanding the new legislation, undocumented immigrants may still receive emergency care under the Emergency Medical Treatment and Active Labor Act (EMTALA) and Emergency Medicaid.  Neither EMTALA nor Emergency Medicaid, however, provides undocumented immigrants with adequate care.  EMTALA, for instance, requires only that hospitals screen individuals for emergency medical conditions and stabilize (or appropriately transfer) individuals with such conditions.  Beyond screening and stabilizing individuals, EMTALA imposes no additional obligations on hospitals to provide care.  Emergency Medicaid is only available to individuals – regardless of immigration status – who are so acutely ill that the failure to receive medical attention would place their health in serious jeopardy.  Health care providers are often unfamiliar with Emergency Medicaid’s eligibility requirements and deny coverage to undocumented immigrants based on their immigration status.  Both EMTALA and Emergency Medicaid focus on providing care only when individuals are at their sickest and when the cost of treatment is at its highest.  From both a health and financial standpoint, it makes little sense for undocumented immigrants to initially engage the health care system at this point.

There are some 7 million undocumented immigrants in the United States, with an estimated 700,000 living in New York State. Sooner or later these individuals will need health care and will likely receive this care at the emergency stage.  The Affordable Care Act offers some hope for folding this population into the health care system in the form of $11 billion support for the creation of community health centers in underserved communities.  Absent federal immigration reform – an issue as divisive as health reform itself, individual states will need to ensure that undocumented immigrants are not left entirely out of the fold.  Failing to do so will only end up being more costly in the future.

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In Victory for Low-Income New Yorkers, NYU Child Study Center Opens Door to Medicaid Patients

Below is a press release we just issued, announcing a major campaign victory!


After advocacy groups’ campaign on behalf of parents of kids with special needs, NYU designates providers who will accept Medicaid and,Child Health Plus

New York, NY, June 1, 2010 – New York Lawyers for the Public Interest (NYLPI), a civil rights law firm whose practice includes health justice and disability rights, along with co-counsel, Cleary Gottlieb Steen & Hamilton LLP and LatinoJustice/PRLDEF, announced today that they successfully campaigned for the Child Study Center of the New York University Medical Center to designate certain doctors who will accept Medicaid and other health insurance. Previously, NYU’s Child Study Center had a cash-only policy for patients, which meant that they did not accept any insurance at all.

As part of the advocacy campaign, which included threats of litigation, a group of parents represented by NYLPI and co-counsel met with NYU leadership and explained how the cash only policy impacted them and the thousands of other families who were unable to access the Center’s state-of-the-art evaluations and medical services for children with disabilities. These services are in extremely short supply across New York City, and without access to the facility at NYU’s Child Study Center, many low-income and minority children were unable to obtain the medical attention they needed.

“NYU has taken a step in the right direction towards eradicating a few of the many institutional barriers keeping low-income New Yorkers from accessing quality health care,” said Nisha Agarwal, director of NYLPI’s Health Justice program. “We still have a long way to go to ensure that all children, regardless of their financial circumstance or background, have equal access to high-quality mental and behavioral health services, but this is one step forward.”

As a result of NYLPI’s action, the Child Study Center has announced that it will designate certain providers who will begin accepting fee-for-service Medicaid and Child Health Plus. Before this change, children and their parents who could not afford to pay cash for evaluations and medical services often went without necessary and recommended medical treatment for serious illnesses.

According to Lorraine Ali, “No mother wants to be told she can’t provide her child with the medical attention he needs. Now I can finally get my son to a doctor who can treat him. It’s the best news we’ve gotten in a long time.”

Although NYU’s Child Study Center has agreed to take the important step of accepting fee-for-service Medicaid and Child Health Plus, it does not have plans to accept any Medicaid managed care plans.  “There continues to be an acute shortage of evaluative and medical services for children with psychiatric disabilities in New York City,” said Kelly McAnnany, director of the Opportunity & Access Program at NYLPI.  “We will continue to work with providers and with state agencies to open the doors to quality health care and educational opportunity for low-income children with disabilities.”

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Making Separate and Unequal Illegal

For those of you who’ve been following our campaign to eliminate separate and unequal health care delivery in New York City’s academic medical centers, we’ve got some good news!  This morning legislation was introduced in the New York State Senate that would make it explicitly clear that private academic medical centers in New York City must provide care to all patients in the same place at the same time.  In other words, they are not allowed to steer Medicaid patients to one section of the hospital, where they provide them with lesser quality of care from privately insured patients, who are seen in another part of the hospital.  To read the text of the bill, click here.  A clearer summary of and justification for the legislation can be viewed here, in what is called the “sponsor memo.”  We will keep you posted as this campaign progresses!

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