Tag Archives: disability rights

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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Filed under health disparities, insurance

(Not) Born in the USA

This post is by Macharia Edmonds, a summer intern with the Health Justice Program and a law student at Northwestern University School of Law in Chicago, IL.

Too often in this country, the treatment of those not born in America differs from those born within our borders.  Some New York hospitals have done the unthinkable and are discharging some non-citizen patients to their death.  These hospitals are practicing what is called medical deportation.  This occurs when a hospital discharges a severely injured, sometimes disabled, non-citizen patient who is in need of long term care to a medical facility in their home country.  Unfortunately these facilities are usually not equipped to adequately treat the patient’s medical needs and the patient often suffers considerable pain and sometimes death from this lack of treatment.

Under New York state law, a patient is required to sign off on a discharge plan which details any health care arrangements needed after the discharge.  These patients are sometimes incapacitated or can have a limited English proficiency which makes understanding the choices they are dealt with difficult if not impossible.  In situations where the patient does not speak English the hospital can and should provide an interpreter.  In situations where the patient may be incapacitated, things become more complex.  If the patient is not able to consent to a discharge then the hospital should look to either an appointed surrogate or a family member.  If there is no one from these groups available to decide, there is often confusion as to who has the right to make this decision.

The New York State Legislature has attempted to address this issue by introducing S7429 and A8647C, a bill that creates a three person panel which would be in charge of making these decisions in the absence of other family or appointed representatives.  This panel would presumably be able to protect patients from being denied adequate medical treatment.  This bill is well intentioned but has a number of issues.  Some of these issues include who is allowed to serve on this panel, the lack of information given to the patient and family during the decision making process, and the lack of restrictions and regulations on discharges to foreign medical facilities.  NYLPI has offered and will continue to offer to the Senate and Assembly suggestions for this bill so that it ensures these patients who are incapacitated and not able to advocate for themselves receive the proper medical care.  No matter what country you are a citizen of, simply being a human being should require a certain level of care.

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Filed under immigrant health, immigrant rights, legislation, medical deportation

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!

FOR IMMEDIATE RELEASE

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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Filed under health disparities, news, people of color

A Link to the Hearing World

This piece, by Health Justice Director Nisha Agarwal, will appear in the upcoming issue of NYLPI’s Pro Bono Clearinghouse newsletter.  It discusses a case that the Health Justice team worked on in conjunction with NYLPI’s Disability Law Center and advocates from around the country.

Imagine going to a hospital for heart surgery and not being able to communicate with your doctor or any of the nursing staff.  Imagine that your 13- and 9-year old children are made to serve as your voice instead: to ask questions for you, to explain the procedures to you, to tell you that post-surgery you had a stroke.  Imagine that your children are given pagers and pulled out of school whenever hospital staff need to speak with you, and that the younger child later attempts suicide because he thinks the problems you suffered in the hospital were his fault.  After all, his 9-year old vocabulary couldn’t find the right words to describe what was happening — to you, to himself or to others.

These are, roughly, the facts of Loeffler v. Staten Island University Hospital, a case decided by the Second Circuit Court of Appeals on October 6, 2009.  Robert Loeffler was a man who was profoundly deaf and sued Staten Island University Hospital for failure to provide him with a qualified sign language interpreter, as required under the Americans with Disabilities Act and the Rehabilitation Act.  NYLPI became involved with the case at the appeals level, organizing a broad national coalition of disability and language rights groups to provide amicus support to the plaintiffs.  Our brief highlighted two issues: (1) the proper legal standard to apply in “deliberate indifference” cases of this kind under disability law and (2) the importance of having competent, qualified medical interpreters in the health care setting, not just for people who are deaf but also for individuals with limited English proficiency and other communication barriers.  Our coalition of amici wanted the members of the court to understand not only the legal right they were being asked to clarify but also, more importantly, its significance.

And understand they did.  Oral arguments took place in March and were notable for the impassioned questioning of one judge on the panel, who described as “inhumane” the use of the Loeffler children as interpreters.  The court’s eventual decision found for the Loefflers on all points of law and remanded to the district court for trial.  In the concurrence, the court concluded, powerfully, by recognizing that the case is “not the dawn of never-ending liability for the Hospital, it is what Congress required – a link to the hearing world.”  For NYLPI, the case was an important opportunity to bridge the disability and language access communities and take part in an important victory for many of the communities we serve.

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Filed under language access