Living in Fear — Children of Undocumented Suffer Health Problems

Check out this article from New American Media on how our immigration policies negatively impact the health and well-being of children of undocumented immigrants. You can read the article here.

OPINION: Address community needs before closing hospitals

Check out the opinion piece written for the Brooklyn Daily Eagle by HJ team members Shena and Jenn about hopsital closures in low-income communities of color in Brooklyn and what they mean for access to care. You can read the piece here.

 

New Report on Health Needs, Gaps and Barriers to Care in North and Central Brooklyn Released in Conjunction with Proposed Redesign of Brooklyn’s Health Care System

See below—and congratulations to Shena, Jenn, and Alyssa for their hard work!

Brooklyn, NY (April 10, 2013)—In conjunction with the proposed redesign of Brooklyn’s Health Care System the Community Health Planning Workgroup (CPHW), a consortium of community stakeholders, healthcare providers and community health planners, today released The Need for Caring in North and Central Brooklyn, A Community Health Needs Assessment, sponsored by The Brooklyn Hospital Center, the I M Foundation, and the New York State Department of Health. The Community Health Needs Assessment, conducted by the Brooklyn Perinatal Network, the Commission on the Public’s Health System, and New York Lawyers for the Public Interest, sheds additional light on North and Central Brooklyn residents’ perception of the needs, gaps and barriers to care in their communities.

The report covers 15 zip codes, including Bedford Stuyvesant, Bushwick, Brownsville, Crown Heights, Cypresss Hills, East Flatbush, East New York, Flatbush, Fort Greene, Prospect Heights, Williamsburg, Downtown Brooklyn, Gowanus and Greenpoint, and addresses key findings, focus group results, and recommendations.

Field surveys and focus groups were used to capture the voices of the community. Community residents completed over 600 surveys, and 79 residents participated in nine focus groups targeting groups underrepresented in the survey sample, including teens; individuals with disabilities; Spanish speakers receiving mental health services; immigrants; men aged 18-35 and 45-55; senior citizens; pregnant women; and LGBTQ individuals.

Following the completion of the Community Health Needs Assessment, listening sessions were held to solicit community input and feedback concerning the findings.

Among the key findings:

• The report found the most common illnesses/health conditions among residents surveyed were high blood pressure/hypertension (24.8%), followed by asthma (19.9%); diabetes (15.7%); and hearing or vision problems (15.2%).
• 85% of respondents said that it would be most convenient to receive care in their neighborhood; almost 20% of the sample (18.7%) received none of their care in their community.
• 50% of residents surveyed said they or members of their household had visited an emergency room in the past two years.
• When asked which healthcare services households had difficulty accessing in their neighborhood, 100% of respondents said a dentist.
• Half of respondents had a limited ability to secure health care services. When asked why, 48% said barriers to health care included quality of care, culture and language differences, hours of service and attitudes of providers; 19.8% said insurance issues or lack of insurance; 23.1% said long waits for or at appointments; and 9.1% said cost of care.

“We are really pleased to have had the opportunity to ensure that the community’s voice is a driving factor in how healthcare is delivered and look forward to the healthcare planning developments that come from the CHNA process. We are hopeful that our process will serve as a model way to meet the needs of communities being served,” said Shena Elrington of New York Lawyers for the Public Interest who served as co-lead partner in the development of the report.

The report concluded with approximately 15 critical recommendations to improve healthcare in Brooklyn. These included addressing accessibility; improving screening, outreach, cultural and linguistic competency, patient-centered care, and customer service training; providing extended hours for primary care; increasing awareness and access to low-cost health services/insurance; providing financial support of efforts by grassroots community-based organizations (CBOs) to promote community resources; coordinating a network of health care and social service providers; engaging community residents; targeting services to focus on particular illnesses and communities; increasing access to specific health care services; working with Access-A-Ride to address transportation issues; increasing the number of providers who accept public health insurance; and increasing availability and access to mental health services.

To read the full report, click here. To read a summary of the report, click here.

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.

Segregated Health Care & the Latino Communitiy

Last week, we met with the New York State Assembly/Senate Puerto Rican and Hispanic Task Force to discuss the issue of segregated care in New York private teaching hospitals and our Health Equity Bill (A07699/S5785).

We brought a small but mighty group of advocates, doctors, and community residents to present before the Task Force on this important issue. According to 2009 United Hospital Fund data, 61.2% of Latinos in New York are on Medicaid or uninsured – meaning that the steering of patients based on insurance type has a particularly strong impact on the Latino community. Access to quality-health care is already difficult for Latinos – language/cultural barriers, above-average poverty rates, restrictions on health care for immigrants, etc. – so the addition of unfair hospital policies, like segregated health care, which have no medical, financial, or moral grounds should not be allowed to continue in New York.

Our bill will make it illegal to separate patients based on insurance type so that all patients are treated with the same care, in the same setting, and with the same respect once they enter a hospital.

Special thanks to our partners, Bronx Health REACH, and bill sponsors, Assemblymember Nelson Castro and Senator Gustavo Rivera for joining us at the Task Force meeting.

Below, you can watch our presentation:

NYS Assembly/Senate Puerto Rican & Hispanic Task Force Meeting 02.29.12 from Somos New York

To view our powerpoint presentation from the Task Force meeting, click here.

Bridging Theory and Practice for Language Rights

Check out a newly published article in the Journal of Health Care for the Poor and Underserved, co-authored by Health Justice Director, Nisha Agarwal, on the importance of language access in the pharmacy setting. This is an area where the evidence about the importance of providing language concordant services for patients who are limited English proficient (LEP) keeps growing and, despite all the discussion in medical circles about “evidence-based” policymaking, we continue to face resistance at state agencies charged with protecting and advancing public health. Instead of collaborative discussions about how to improve access to prescription medications for immigrant communities and reducing health disparities, we hear complaints about how language assistance services might put huge chain pharmacies out of business – immigrant scape-goating at its worst.

We’re taking our fight to the pages of research journals, as well as to the corridors of power in Albany and to the streets until we win. Join us in this effort! Send us an email and let us know that you’d like to join the coalition to ensure Safe Access for Everyone to prescription medications (SafeRx): healthjustice[at]nylpi.org.

A Community Mobilizes to End Medical Apartheid

Hello readers, we are pleased to announce that the peer-reviewed journal, Progress in Community Health Partnerships, has published a piece about our campaign with Bronx Health REACH to end segregation in the delivery of health care services by teaching hospitals in New York. You can download a copy of the piece here. Feedback welcome! We are using every avenue at our disposal to get the word out about this urgent issue, including the very types of publications that health care providers and policy decision-makers are likely to peruse.

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.

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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 24^th 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>

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 areas – The 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.

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[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.

Knowledge is Power

This post is by Julina Guo, a Columbia University student and intern for the Health Justice program.

Disparities in health care impact thousands of lives every day.  One of the biggest challenges in the fight for equal health care is lack of awareness. We can help ourselves to become more knowledgeable and informed so that our own voices are heard in the healthcare debate. Below is a list of notable works that have highlighted pressing issues in health care equality as it relates to race, immigration, gender, and socioeconomic status. Although numerous reports and research studies have been published on the topic of health disparities, we focus in this bibliography on more journalistic works that tell a story of how health disparities impact real human lives.  We hope you find it useful!  And if, in the course of your travels through this literature, you discover other wonderful texts you’d like to share, please email us  (healthjustice@nylpi.org) and we’ll add them to this bibliography.  Thanks!

Abraham, Laurie K. 1993. Mama Might Be Better Off Dead: The Failure of Health Care in Urban America.  Chicago: University of Chicago Press.

Abraham examines the real impact of unequal health care on the Banes, a low-income African American family, in Chicago. Through stories of inadequate medical attention, visits to the emergency room, struggles to qualify for Medicaid, and other misfortunes that befell this family, Abraham depicts the need for health care reform through the eyes of the poor.

Byrd, W. Michael and Linda A. Clayton. 2001. An American Health Dilemma: Race, Medicine, and Health Care in the United States, 1900-2000. New York: Routledge.

An extensive chronicle of the African American experience within the larger context of health care in the United States and global racism in the last 2,000 years. Byrd and Clayton posit that that the denial of quality health care to African Americans originated in colonial era, a tradition that quickly transformed into a social norm to deprive African Americans of their rights.

Fadiman, Anne. 1997. The Spirit Catches You and You Fall Down:  A Hmong Child, Her American Doctors, and the Collision of Two Cultures. New York: Farrar, Straus, and Giroux.

This book describes the emotional and medical tragedy of the Lee family, a refugee Hmong family from Laos, in the 1980s. When their child Lia Lee was diagnosed with severe epilepsy at an early age, the Lees tried to negotiate with doctors in a culturally mismatched setting only to find tragedy.

Hilfiker, David. 1994. Not All of Us Are Saints: A Doctor’s Journey with the Poor. New York: Ballantine Books.

Hilfiker documents his experiences as a physician in a Washington, D.C. ghetto. In 1983, Hilfiker moved his family into the Christ House, a medical recovery shelter for homeless men, and later founded an AIDS shelter in 1990. This moving narrative depicts vivid personal encounters with a ravaged health care system divided by race and poverty.

Jones, James. 1993. Bad Blood: The Tuskegee Syphilis Experiment. Free Press.

An analysis of experimentation by the United States Public Health Service from 1932 to 1972 on poor African American men infected with syphilis. Jones argues that by purposing deceiving and depriving the men of medical treatment, doctors perpetuated an ugly symbol of racism that has survived to this day.

Smith, David B. 1999. Health Care Divided: Race and Healing a Nation. University of Michigan Press.

Telling first-hand accounts and statistical evidence of inequality in health care outcomes move this narrative as it details changes from the 1920s to the present. Smith examines efforts by the federal government and courts over the years, giving special attention to the 1964 Civil Rights Act in the health care arena.

Vigen, Aana Marie. 2006. Women, Ethics, and Inequality in the U.S. Healthcare: “The Count among the Living.” Palgrave Macmillan.

A perspective of the disparities of healthcare as seen through African American and Latina women with breast cancer. Vigen crafts their stories in the context of current healthcare research, giving a voice to those marginalized in the healthcare debate.

Washington, Harriet A. 2006. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. New York: Harlem Moon.

Washington examines the history of unethical medical experimentation of African Americans. She details practices in the colonial era, following the introduction of Darwinism, social eugenics, and the Tuskegee Experiment