Round-the-Clock Care, Half-the-Clock Pay

Socorro Toribio emerged into bright sunshine on a recent Wednesday morning in July after spending four days in her bedridden client’s Lower East Side apartment. Although the sixty-year-old home health aide said she hadn’t stepped outside since arriving at work the previous Saturday, she was eager to head home to the Bronx apartment she shares with her eighteen-year-old grandson.

“A lot of work last night,” Toribio said in Spanish, letting her head, wrapped in a Dominican flag scarf, tilt to one side.

Yet despite feeling sleep-deprived, Toribio didn’t head home after work that day. Instead, she took the train to Downtown Brooklyn to the headquarters of the state Department of Labor, where home health aides held signs in Spanish, Chinese, and English denouncing the state policy under which they are allowed to be paid for just thirteen hours of their 24-hour shifts.

The state labor department’s longstanding guidance to home care employers is based on the assumption that aides are able to sleep and eat during the other eleven hours, mostly uninterrupted. But workers say that’s rarely the case. While working consecutive 24-hour shifts, for example, Toribio says she gets up multiple times each night to check her diabetic patient’s blood-sugar levels, help her change position, change her diaper, and respond to the frequent night-time outbursts that come with advanced Alzheimer’s disease.

“Some nights the patient calms down and I get a little rest,” said Toribio, “but not much.”

While Gov. Andrew Cuomo has touted his support for the “Fight for $15” — the movement that succeeded in raising the minimum wage to $15 in New York City by the end of 2018 — his administration is aggressively pushing back against workers like Toribio who are fighting to get paid for a full day of work. Last year, multiple courts ruled that home care workers should get paid for every hour they’re at their clients’ homes. Yet since then, the state Departments of Labor and Health have actively sought to preserve the thirteen-hour policy, arguing that the higher costs could destroy an industry that allows elderly and disabled New Yorkers to remain in their homes.

Critics of the administration’s response say it’s time for the state to come up with a way to sustain the largely government-funded home care industry without relying on free labor. Home care industry groups estimate that could cost billions of dollars. But without the administration revealing, at the very least, how many patients actually receive 24-hour care, it’s hard to get a clear picture of what the impact would be.

What’s needed, says Assemblymember Richard Gottfried, who chairs the Assembly Health Committee, is “coming up with a cost estimate and then making sure there’s money in the state budget to pay for it. It is abhorrent to tell workers that we expect them to work without getting paid.”


The number of retirement-age Americans is set to double between 2016 and 2060, according to the Population Reference Bureau, and the demand for home care is rising. But few states make the service as accessible as New York, which helped pioneer the shift toward home care as a safer, more cost-effective, and more humane alternative to nursing homes. In New Jersey, for instance, it’s much more difficult for an older adult to qualify for home care under Medicaid, the government-funded, state-run health insurance program for low-income residents.

Because Medicaid coverage is more robust for home care in New York, 24-hour care is more common. “An aging population is not unique to New York state but New York is unique in that it has an opportunity to set a tone for what home care could look like,” said Amy Torres, director of policy and advocacy at the Chinese-American Planning Council Home Attendant Program, which provides home care services. “That means fully funding the work people are doing and making it so the 24-hour shift is not commonplace.”

Home care accounted for $9.3 billion of New York’s roughly $70 billion Medicaid budget last fiscal year, according to the state Department of Health. In New York City, where more than three quarters of the state’s 224,400 home care employees work, 93 percent of home health aides are women and 79 percent are immigrants. The union 1199SEIU United Healthcare Workers East has estimated that 8 percent of the home health aides in New York state work 24-hour shifts.

The Cuomo administration has declared that it is adding $6 billion in new funds for home care from 2015 to 2021 to pay for the long-overdue gains the workforce has made in recent years, such as overtime and minimum wage protections that were extended to these workers for the first time in 2015 by the Obama administration. Yet the thirteen-hour policy is one relic of home care’s past that has been particularly hard to shake.

Recently, home care workers have filed more than 145 class-action lawsuits against New York home care agencies challenging the policy and seeking back wages for workers’ uncompensated hours, according to the law firm Littler Mendelson, which represents home care agencies. In October, workers achieved a victory when two state appellate divisions ruled in their favor in lawsuits that have the potential to set a precedent for other cases.

But home care employers cautioned at the time that if the rulings are upheld by the state’s highest court, they will lead to rising costs that could cripple the industry. In addition to doubling the cost of providing 24-hour care, the rulings could make home care agencies liable for back wages for any aide who has worked a 24-hour shift in the last six years, per the statute of limitations in New York.

Littler Mendelson has calculated it would cost a single home care employer an estimated $600,000, plus fees, to pay the back wages owed to just a single home health aide if a court rules in the aides’ favor. (That estimate, though, is based on the unlikely scenario of an aide working 24-hour shifts, seven days a week, for the same agency for the entire six years.) Meanwhile, the price of 24 hours of home care under the current wage regulations in New York City would go from about $222 per day before overtime and administrative costs to about $410 — similar to the average cost of a day in one of the city’s nursing homes.

“In other cases employers always suddenly announce that they’re impoverished when they get sued for having egregiously violated people’s rights,” said Richard Blum, an attorney with the Legal Aid Society who has represented both home care workers and patients. “And we see when regulations are proposed that would ameliorate conditions for workers the industry comes out and says, ‘Oh no, we can’t afford that; we’ll go bankrupt.’ We hear that all the time.”

The difference here, Blum said, is that much of home care in New York is publicly funded. Both labor advocates and home care employers hold the state responsible for the situation the industry is in, and are calling on the state to help clean up the mess it created. But how it should go about doing that is a point of contention.


On the same day that Toribio and her colleagues rallied outside the state Department of Labor, the department held a public hearing on proposed regulations to codify the thirteen-hour policy into state law, in an effort to fortify it against lawsuits saying the state is violating its own minimum-wage laws. The department issued a temporary update to that effect in October, and has been renewing it without public input ever since by categorizing it as an “emergency”; the department finally scheduled the public hearing in order to make the regulations permanent.

Keeping the thirteen-hour policy intact is necessary to “prevent the collapse of the home care industry, and avoid institutionalizing patients who could be cared for at home,” the Labor Department said in the explanation for its emergency regulations in the state register.

The state stepped in with the emergency regulations after many home care agencies moved to immediately comply with the court rulings rather than risk further liability. After the court decisions came out last year, some agencies started demanding more money from Medicaid, threatening to discontinue care for 24-hour patients if they didn’t get enough funding to pay their employees for all 24 hours, according to emails sent to the state Health Department that were obtained through a Freedom of Information Law request.

“This is a very serious issue for us as Good Care Agency closely adheres to NYS labor laws,” the home care provider wrote in an email to Elderplan/Homefirst, a Medicaid-funded health plan it had a contract with, in May of last year. “We only see two ways this scenario will go from here. Either we are provided with new hourly rate authorizations for live-in cases or we request for these cases to be removed from Good Care Agency effective immediately.”

Elderplan forwarded that email and others like it to the Health Department. It also forwarded the department a letter it sent to Good Care Agency reprimanding the home care provider because it had threatened to “abandon one or more of our members.”

The state’s emergency regulations were supposed to quell home care agencies’ fears and stop this chilling effect on 24-hour care, but they haven’t necessarily succeeded. “Many agencies have stopped providing these services,” making it difficult for Medicaid beneficiaries who need 24-hour home care to find it, Claudia Hammar, president of the New York State Association of Health Care Providers, said at the hearing in July.

Meanwhile, home care workers and grassroots labor organizations have sued the Labor Department and its commissioner, Roberta Reardon, to void the emergency rules, calling them a “drastic departure” from the state’s minimum wage law.

State Assembly members Harvey Epstein and Jo Anne Simon say they want to work with stakeholders to come up with comprehensive policy solutions rather than simply holding onto the thirteen-hour policy at all costs. Epstein, who was elected to the assembly in April after serving in a senior role at the Urban Justice Center, a nonprofit legal organization that represents some of the home care workers who have sued their employers, says, “If the Department of Labor enters these rules [reinforcing the thirteen-hour policy] then it’s up to us in the Assembly and the Senate to pass legislation to overturn this really ridiculous idea that people don’t have to be paid for the hours that they work.”

Cuomo has yet to publicly weigh in on this issue and his office did not respond to a request for comment. But when the governor wants to support a cause — even an expensive one — he has found a way to fund it.

Back in 2016, Cuomo wasn’t deterred by concerns home care industry groups raised that they wouldn’t be able to afford a higher minimum wage. After the Fight for $15 was successful, Cuomo promised Medicaid would cover the cost of the increase for some home care agencies and other health care providers, which will soon amount to more than $1 billion annually.

In the last budget session, Cuomo’s fundraising proposals for health care were diverse: They included new taxes on private health insurers, surcharges on opioid manufacturers, and a tax on a major sale of a nonprofit to a for-profit company. Cuomo also proposed reining in rising home care costs by limiting eligibility to higher-need patients, although that measure wasn’t included in the final budget.

“We make difficult financial decisions all the time,” says Epstein. “The answer can’t be that the government can’t do it, and that this has to be on backs of low-wage workers who are already some of the lowest-wage workers in the country.”


Toribio moved to the U.S. from the Dominican Republic about twenty years ago and started working as a home health aide shortly after, reasoning that it was better than working in a factory. “If you don’t speak English there aren’t a lot of options,” she said. Toribio has been with her current patient for about a decade, and says she’s developed a lot of affection for the woman, who is only about fifteen years her senior. While some of her colleagues are calling for an end to 24-hour shifts altogether, she says she just wants to be paid for all the hours she works and “to not be abused.”

Home care agencies insist that no one should be working 24-hour shifts in the first place. “None of our employees is responsible for providing 24 hours of care,” said Jocelyn Lee, executive director of First Chinese Presbyterian Community Affairs Home Attendant Corporation, the agency that employs Toribio. “Workers are responsible for reporting to the agency if they are unable to get their uninterrupted sleep due to the patient’s condition so that a nurse can visit the patient to assess whether a different level of care is required, and to ensure the worker is properly compensated for all hours of work.”

But during the hearing, worker after worker testified before Labor Department officials that they had not been paid for the hours they worked at night, even if they reported them; two aides said they were taken off of 24-hour cases after reporting nighttime hours.

Asked if she had ever reported the nighttime hours she works to her coordinator at the agency, Toribio scoffed. “What for?” she said. “The coordinator knows.”

Although aides are officially supposed to get compensated if they don’t get the requisite amount of sleep and meal time, Medicaid funding for home care isn’t structured to accommodate that level of flexibility. Typically, Medicaid pays a flat monthly rate for each member to cover the cost of the services they need.

A spokesperson for one nonprofit agency that paid 24-hour aides for the nighttime hours they reported for a period of time said, under the condition of anonymity, that the organization pulled from its operating budget and funds raised on its own to cover the extra hours.

Home care patients who require a level of care that regularly prevents 24-hour home attendants from getting the requisite sleep and meal time are supposed to be approved for “split-shift” care, which is broken up into twelve-hour shifts performed by two different aides. However, in the city that level of care is notoriously difficult to get approved by Medicaid.

Shirley Ranz, a retired pharmacist who lives in Sheepshead Bay, Brooklyn, said the state’s labor policies led her to find an alternative to 24-hour home care for her mother, even though she qualified to receive it under Medicaid when her mother’s Alzheimer’s started to advance.

Ranz said her request to have aides care for her mother in two twelve-hour shifts was denied, even though her mom would often wander at night. “Sometimes the aide would come in the morning and every dish and pot and pan in the kitchen would be spread all over the floor,” Ranz said. Eventually Ranz’s brother moved into their parents’ house to care for their mother.

“When I learned the aide would only be paid for thirteen of 24 hours I had two reactions,” Ranz said. “One was, ‘How could they do this to these people?'” The other, she says: “If the aide can’t get to sleep at night, it’s a danger to my parents as well as to her.”

Healthcare The Economy THE FRONT ARCHIVES

Trump’s Medicaid Work Rules Are Latest Attempt to Demonize Poor

When Stephen Pimpare learned last week that the Trump administration would begin allowing states to test establishing work requirements for Medicaid, which provides healthcare coverage for roughly one in five Americans, he was frustrated if not surprised.

“The constant strain of American political culture has been to internalize this idea that if you are poor it is a moral failing, rather than circumstances beyond your control,” says Pimpare, a University of New Hampshire professor and author of A People’s History of Poverty in America. As far back as the 1800s, he notes, poorhouses in major American cities including Chicago and New York imposed so-called work tests, where in order to demonstrate their “deservingness,” people would “have to carry rocks from one side of the yard to another and then carry them back again.” Up through the twentieth century — with the Reagan-era image of “welfare queens” sitting around the house collecting checks — and into the twenty-first, Pimpare added, “every argument in favor of work requirements is based on ignorance of the population that uses the program.”

In announcing new federal guidelines last week, Seema Verma, who heads the Centers for Medicare and Medicaid Services, said the goal is to move Medicaid recipients out of the program and into jobs with private insurance benefits. Seventy percent of respondents to a national Kaiser Family Foundation poll last summer said they supported work requirements for Medicaid. But in fact, 60 percent of Medicaid recipients of working age and without a qualifying disability already worked either part- or full-time as of 2016, according to another Kaiser study. Among Medicaid recipients who don’t work, roughly a third are ill or disabled, and another third are caretakers, according to Kaiser.

And New York City’s own experience with work requirements — most prominently for recipients of welfare benefits, as implemented under the Giuliani and Bloomberg administrations — indicates that trying to force the relatively few Medicaid recipients who can work but don’t to enter the workforce, or risk losing benefits, increases the risk of collateral damage for all recipients.

Sanctions for those who can’t provide proof of employment, says Legal Aid Society supervising attorney Kenneth Stephens, “vastly increase the number of families at risk of homelessness, hunger, and the attending consequences of not having even close to enough money to live on. So if you are talking about adding on to that a denial of access to healthcare? Fill in the blanks.”


There is some evidence that work requirements can increase employment, at least in the short term. In 2016 the Center on Budget and Policy Priorities reviewed thirteen studies of work requirement programs across the country from the 1990s, after the Clinton administration implemented work requirements for cash and food assistance (and sanctions for noncompliance). A Portland, Oregon, program saw employment of welfare recipients increase 11.2 percent in its first two years, for example.

But those gains dropped off within five years. More importantly, the same report found that the jobs people entered weren’t high-paying enough to lift workers out of poverty.

“I just question whether we’re really tackling the biggest problem we are facing, which is structural issues in the lower-wage labor market,” says Elaine Waxman, a senior fellow in the Income and Benefits Policy Center at the nonpartisan Urban Institute. The fast-growing job markets, she points out, tend to be in industries like home care that are low-paying and don’t come with benefits or collective bargaining rights. “We’d all like a world where people don’t have to rely on a safety net. But we have to be realistic about the world of work we’re facing.”

Ten states, including Arizona, Arkansas, and Maine, have already requested waivers to impose Medicaid work requirements. Governor Matt Bevin of Kentucky announced last Friday that his state will be the first to do so, with a program that “incentivizes personal responsibility.” (He also praised the plan as fiscally responsible, though whether the state will actually save money once administrative costs are factored in is an open question.) In addition to 80-hour-per-month work or “community engagement” requirements (job search, job training, volunteer work, or school), qualified recipients will have to pay monthly premiums of $1 to $15 to the state. Recipients will also risk a multi-month suspension of benefits if they fail to quickly report income changes.

“Much of what worries us about the new plan is simply that it’s highly bureaucratic,” Rich Seckel, director of the Kentucky Equal Justice Center, tells the Voice. In Kentucky, more than half of residents receiving expanded Medicaid are already employed, though most work in jobs with fluctuating hours and incomes that would be difficult to report accurately. As of 2015, the top three industries for working Medicaid recipients in the state were food service, construction, and retail. “How would they even know if a change in their income would make them ineligible?” Seckel wonders.  

“I am self-employed dry stone mason,” one anonymous Kentuckian wrote during an open comment period on that state’s proposal last summer. “My work or lack of work depends greatly on the economy.… Since I am self employed, I have no way of knowing what my monthly income will be, if any.” Fulfilling a short-term work or community service requirement would cut into his job hunting, he added.

Problems arose as well in New York City when Mayor Rudy Giuliani implemented the country’s largest “workfare” program, the Work Experience Program, in 1995. In order to receive cash assistance, New Yorkers without a job were required to work 35 hours per week — as janitors, as maintenance workers for the MTA, and in city parks. They received no pay other than their welfare benefits.

According to Stephens, recipients “would lose some or all of their meager subsistence benefits for something that could be as simple as missing a meeting because their kid was sick, or they went to attend housing court, or any of the numerous things that can happen in an individual’s life.”

Under Giuliani, the number of New Yorkers on welfare fell steeply, from 1.1 million to fewer than 500,000. By early 2010, that number hit 350,000. It has now rebounded slightly to 366,387 as of last November, after Mayor de Blasio restructured the program, replacing labor requirements with certification classes (GED, food handling, a commercial drivers license); college enrollment also qualifies. The Legal Aid Society has also successfully litigated to scale back sanctions.

Bronx resident Margarita Cruz, 49, is a member of the nonprofit Community Voices Heard, which formed in response to what it considered the modern-day slavery of workfare. Cruz participated in WEP as a subway cleaner starting in 2014 when her twin daughters were nine years old. In January 2017, she was finally hired by the MTA, albeit in an entry-level position.

Cruz tells the Voice that under workfare, the HRA initially “wanted the people to take whatever they were offering. And the jobs only last for three or four months and then you have to go back through the system.” During her three years on WEP, she says, “all the time I was trying to not be suspended, because then…I’m going to have problems with the rent and the food and everything.”


Pimpare, the UNH professor, predicts that efforts to implement work requirements for Medicaid will stall in the courts. Section 1115 waivers, which allow the federal government to approve pilot programs like this one, are required to help states further the goals of Medicaid, and as Pimpare says, “nowhere in the Medicaid statute does it say anything about ‘work’ being a goal.” Advocates in Kentucky are already threatening to sue before that state’s plan goes into effect in July (Bevin has responded with a fresh threat to shut down his state’s Medicaid expansion altogether), and the Southern Poverty Law Center is also planning to challenge the new federal guidelines.

Regardless, Hannah Katch, a senior policy analyst at the Center on Budget and Policy Priorities, warns against assessing these proposals in a vacuum. “I think it’s in the context of a consistent attack on the Medicaid program that we’ve seen over the last year,” she says. “We saw legislation in the House and Senate — that came very close to passing — that would have massively cut and radically restructured the financing of Medicaid. And I don’t think they’re done.”

If Kentucky can set a national example, so too can New York, argues Katie Robbins, director of the Campaign for New York Health, a coalition advocating for a single-payer statewide healthcare system. This April, the state assembly is expected to pass the New York Health Act for the third consecutive year. This would disband private insurance in New York State. Last year the bill came one vote shy of majority support in the Senate without any Republican endorsements. That holdout vote, Simcha Felder of Borough Park, is a Democrat who caucuses with the Republicans. Advocates are already canvassing his neighborhood this year, where a third of residents lived in poverty in 2015.

“His office has not responded positively — it’s very disappointing,” Robbins says of Felder. Still, Washington’s repeat attacks on Medicaid are only fueling the fire.

“I think it’s just another example of the kind of responsibility a state like New York or California has,” she adds. “To set the bar really high for the kind of healthcare program we really need.”



Type Miscast: An Elmhurst Doctor’s Type 2 Diabetes Misdiagnosis Results in the Death of a Six-Year-Old Girl

The little girl could barely breathe. She lay on the hospital bed, her chest rising with each forced inhalation. Irma Nicanor held her only child’s hand. The six-year-old’s eyes were closed, but Irma felt her tiny fingers squeezing.

“Stay strong, Claudialee,” she told her in Spanish.

Irma was dazed by how everything had gone so bad so quickly. It was early on a January evening in 2010. They’d checked into New York Hospital in Flushing that afternoon. Claudialee was nauseated and had a tummy ache. Irma figured she’d caught a stomach virus from a boy in their apartment building. She now knew that it was more than that.

Two days before, Cladialee was running around the house, climbing over couches and crawling under tables. She seemed as healthy as she’d ever been. Yes, she was overweight, and her blood sugar was slightly high, but Irma was seeing to it that her daughter would get fit.

A bubbly girl with a loud laugh, full cheeks, and a thick mop of dark brown hair, Claudialee had plenty of energy for that mission. The girl took ballet and karate lessons. She ran around the park with her dad and rode bikes with her cousin. During snack time at P.S. 32, she pulled out sandwich bags filled with celery and carrots and sliced fruit. Her first-grade teacher would eat with Claudialee so that she wouldn’t feel bad about not having sweets like the other kids.

Irma was always conscious about her daughter’s health. Over the past three months alone, she’d taken Claudialee to six medical appointments: three times to her pediatrician, Dr. Thelma Cabatic, for flu shots and checkups; and three times to her endocrinologist, Dr. Arlene Mercado, to deal with her blood sugar. At each visit, Mercado would tell Irma that her girl was fine, in need of nothing more than diet and exercise.

Yet two weeks after her last checkup, here was Claudialee struggling for air, half-conscious in an emergency room. “Patient has slight movement of all four extremities spontaneously but not on command,” the hospital notes read. “Mumbles occasionally.”

The scene was overwhelming for a mother. Nurses scurrying around. Chemicals with smells much stronger than the cleaning supplies Irma used in her job as a housekeeper. Intravenous tubes attached to Claudialee’s arms, alternately streaming potassium salts, water, and glucose. The girl’s blood sugar had risen to 525 milligrams per deciliter—more than five times the normal level.

How could this happen? Irma kept asking herself.

Claudialee’s lungs struggled as the night wore on. Nurses strapped an oxygen mask to her face. It wasn’t enough. They decided to push a tube down the child’s throat so a ventilator could help her breathe. But Claudialee wasn’t having it. Even half-conscious, she was still a flare of vigor. Her arms flailed and her legs kicked. The nurses didn’t expect such strength. They retreated and injected her with a sedative. Then they inserted the tube. Claudialee was now unconscious and dependent on a machine to supply her with oxygen.

Irma sat in the waiting room, praying. She called her sister Marta. It was about 4 a.m., but Marta rushed to the hospital. She got lost in the hallways, missed the waiting room, and ended up at Claudialee’s bedside. The two were alone, the only sounds coming from the robotic hums and beeps of intensive care.

“It hurts,” Marta thought she heard the girl whisper.

“Where does it hurt?”

There came no reply.

St. James Avenue was quiet and still on October 31, 2009. Irma and Claudialee passed the modest wood-frame homes with yards fronted by low chain-link or wrought-iron fences. American flags fluttered beside satellite dishes. Not a single person was in sight. Just the kind of tranquility a family hopes for when they move to Elmhurst.

Mother and daughter stopped in front of a cream-colored three-story house, then walked up the driveway to a concrete backyard. Irma might as well have been taking Claudialee to a classmate’s birthday party.

Court documents, medical records, and interviews would detail what followed.

The pair descended a stairwell to a minimalist setup: a desk and several chairs. Curtains forming two makeshift rooms. Dr. Arlene Mercado’s office was in the basement of her sister Myra Mercado Capistrano’s house.

Mercado opened the clinic in 2007. Thirteen different insurance companies listed her practice in their network. She had a second practice at the SUNY Downstate Medical Center in Brooklyn. And she accepted Medicaid, the government health program for low-income people. She was a pediatric endocrinologist, specializing in children and the hormones and chemicals that could stunt growth or bring on early puberty. The most common issue she dealt with was diabetes.

She was well versed in practice, if not theory. Mercado was not board-certified in her specialty, American Board of Pediatrics records show. She failed the certification exam more than five times. Without passing that, she couldn’t attempt the next step, the pediatric endocrinology test. But these setbacks didn’t stop her. Board certification isn’t mandatory. In fact, though she couldn’t pass the test herself, Mercado taught a certification-exam review course in Children’s Hospital at SUNY Downstate.


Her business was a family affair. Mercado had two paid employees: Myra, the clinic manager, and Myra’s husband, Edward Capistrano, the billing supervisor. The Capistranos’ children handled the patients.

Paul, a 23-year-old political science grad student with a degree in math, and Bernard, a 21-year-old graphic design major, measured heights, weights, and blood pressure. Twelve-year-old William sat at the front desk, answering phones and filling out appointment cards.

Irma handed William a referral card from Claudialee’s pediatrician, Dr. Cabatic.

She’d taken Claudialee to see Cabatic five days earlier for the first in a series of flu vaccinations. Claudialee had the sniffles, so Cabatic ran her through a full examination. Four days later, the doctor called to say that Claudialee’s urine and red blood cells showed abnormal glucose levels. Her blood sugar was above normal, suggesting the girl might become diabetic. In her notes, Cabatic wrote, “probable diabetes mellitus.”

The disease stems directly from high blood sugar. In type 1 diabetes, the immune system kills off cells that produce insulin, the hormone that brings the body’s glucose supply to muscle and fat. If the body doesn’t get more insulin, the person will die.

In type 2, a person has a lot of insulin, but the stuff just doesn’t work. Insulin resistance, doctors call it. Obesity is the usual cause. The damage is slower and can be treated through diet, exercise, and medication.

Cabatic knew Claudialee was at high risk for diabetes. The girl’s maternal grandmother, paternal grandfather, and three of her uncles had it. She recommended that the girl see a specialist and gave Irma the name of a pediatric endocrinologist who spoke Spanish and would accept her Metroplus Medicaid card. (Metroplus, a nonprofit healthcare organization that provides Medicaid in New York, did not respond to interview requests for this story.)

Irma called Mercado’s office to set up an appointment for the next morning.

After asking about the family history, Mercado took a blood sample from Claudialee. The doctor was a short, round woman who peered over thin spectacles and disarmed with a cheerful smile. She told Irma she would send the blood to a lab and they’d discuss the results in two weeks.

The test would duplicate Cabatic’s results: Claudialee’s blood sugar level was higher than normal, but not high enough to be considered diabetes. She was “prediabetic.” During the next visit, Mercado explained to Irma that the results were nothing to be too concerned about. The girl just needed to lose weight. Diet and exercise. She handed Irma a sheet of paper with a food pyramid on it.

In her notes, Mercado wrote that if the patient didn’t lose weight by her next checkup in mid-December, she would prescribe Metformin, a drug used to treat type 2 diabetes.

Though type 2 used to be called “adult-onset” diabetes, Mercado knew recent studies had shown that a growing number of kids were getting it. At 3-foot-9 and 67 pounds, Claudialee was clinically obese. Mercado noticed a dark spot on her neck, often a sign of insulin resistance.

By her next appointment on December 12, things were looking up. Claudialee was thinner. Mercado didn’t conduct any tests or ask many questions. It was a brief but reassuring meeting, full of grins and calming words. Claudialee is fine, the doctor told Irma. She just needs to drop another pound or two. Diet and exercise.

In her notes, Mercado wrote that she’d administer another blood glucose test on the next visit. As Irma left, William handed her an appointment card telling them to come back on February 23.

Cabatic echoed Mercado’s optimism when the mother and daughter returned on January 9 for the girl’s final flu shot. It happened that Claudialee had come home early from school the day before. During snack time, she complained that her heart was beating faster than normal. The nurse sent Irma a note saying a doctor had to sign off before Claudialee could return to class. Cabatic assessed her vital signs. Normal heart rate and blood pressure. No cough. No chest pain. No difficulty breathing. All was stable.

Cabatic had more good news: In the 10 weeks since the October 26 checkup, Claudialee had lost five pounds and grown two inches.

As far as the doctors could tell, Claudialee was getting healthier by the week.

On January 21, Marta Nicanor, Irma’s sister, picked up her six-year-old son, Gustavo, and Claudialee from school. Irma worked as a housekeeper for a family in Port Washington, Long Island. Most days she left her apartment at 8:30 a.m. and didn’t get home until nearly 8 p.m, so Claudialee spent most of her evenings at her aunt’s place. She’d play with Gustavo, her best friend.


Claudialee told Marta she was tired and that her stomach had been bothering her. She wanted to lie down. Marta called Irma, who called Dr. Cabatic to schedule an appointment for first thing the following morning. She left work early and arrived at her sister’s apartment about 4:30 p.m.

When Claudialee heard her mother come in, she hopped out of bed, ran over to her, and threw up. Irma took her to their apartment, one floor up in the same building.

Born less than 15 months apart, Irma and Marta were closer to one another than to any of their other six siblings. The family grew up poor in the state of Puebla, southeast of Mexico City, and they both dreamed of raising their children in the United States. When they were in their early 20s, they made their way north. Over the years, they would earn the solid, working-class life they’d aspired to.

For a while Irma lived in East Harlem with Claudialee’s father, Napolean Gomez. They separated when Claudialee was a year old. Irma moved in with Marta and her husband in Flushing. She stayed for a year, waiting for an apartment to open up in the same building. She wanted to live near her sister, who stayed home to look after her three children. There was nobody Irma trusted more with the care of her daughter.

Irma took Claudialee’s temperature. No fever. She offered food but the girl wasn’t hungry. She was very thirsty, though. Irma placed Gatorade and ginger ale on the nightstand by her bed, but Claudialee only wanted water. She napped for a couple of hours, then gulped more water. She fell back to sleep at about 10 p.m., with her mother lying beside her.

Claudialee woke up drowsy. She always dressed herself, but on this day Irma had to do it for her.

They made the 10-minute walk and got to Dr. Cabatic’s clinic at 9:30 a.m. It didn’t open until 10, but Irma routinely arrived at doctors’ appointments early. Then 9:30 became 10:30 and 10:30 became 11. The door remained locked. Irma called Cabatic’s cell phone and office line seven times. No answer.

Claudialee kept saying her stomach ached, that she felt tired and really thirsty. She’d vomited three more times that morning.

She normally didn’t complain about things—she was the type of girl who fell off a scooter, scraped her knee, and got right back on without hesitation. Irma called a cab and asked the driver to take them to New York Hospital.

Claudialee began to sway and stumble as they walked toward the emergency room. Before reaching the entrance, she nearly collapsed. Irma picked her up and carried her the rest of the way.

As hospital workers ran tests, a nurse asked Irma if Claudialee had been urinating more and drinking more than usual recently. Irma said she had noticed her daughter doing both since Christmas.

This suggested that Claudialee’s blood sugar had been rising.

The test results—five times the normal level—supported that hypothesis.

“When the doctors came in and told me about blood-sugar levels—that was a surprise,” Irma tells the Voice. “That was the last thing I expected to hear. That’s when I knew something was really wrong.”

There had been other signs. Months after Claudialee checked into New York Hospital’s ER, pediatric endocrinologist Craig Alter reviewed her medical records. He was shocked, unable to understand why Dr. Mercado had so quickly ruled out type 1 diabetes.

“If you tell me there is a five-year-old with diabetes, the chance that they have type 1 is probably 99.99 percent,” he would later testify. “If you tell me they are obese, I would say, okay, the chance is 99.7. It’s almost definitely type 1.”

Alter, a physician at the Children’s Hospital of Philadelphia, is one of the world’s top experts on diabetes in kids. He teaches a pediatric endocrinology class at the University of Pennsylvania’s medical school. He is chairman of the Educational Committee for the Endocrine Society and gives lectures across the globe. In 2001, he founded Camp Freedom, a summer program in Pennsylvania that brings together diabetic youth for a week of swimming, hiking, and sharing insulin-injection stories around the bonfire. Last year, 140 kids registered; 139 of them had type 1.

Even though rates of type 2 are rising among minors, the condition remains rare in children under 10 years old. The National Institutes of Health report that one out of every 5,000 kids in that age group has type 1 diabetes, while one out of every 250,000 gets type 2. The reason is simple: Type 1 is a condition people are born with or acquire very early in life; type 2 develops over time—enough time for the body to build a resistance to insulin.


Not only is type 1 far more common in six-year-olds, it is also far more urgent.

“Type 2, you have a little more luxury of time. Type 1, you do not have the luxury of time,” Alter testified. “Type 1, if we don’t give them insulin, they will die.”

Blood sugar is like temperature—it rises gradually. In the months since Claudialee’s last tests, the girl’s blood sugar level continued to rise, right under her doctors’ noses.

Even as the puzzle pieces began to emerge, each showing a symptom of the disease, neither Mercado nor Cabatic saw the whole picture. Weight loss can indicate that the body is starving as a result of its failure to absorb glucose. Sudden heart palpitations can indicate that the body is dehydrated from losing the sugar-laden fluids via urination.

“In a child where there is a possibility of diabetes, any symptoms that develop that might be linked to diabetes have to be assumed diabetes until proven otherwise,” Alter said. “You look for anything to tip you over the edge. The appropriate treatment would have been more-frequent monitoring to determine if diabetes was present then, or to catch it early within a few days, had it progressed.”

Because Mercado had locked in on type 2, she did not monitor her patient’s blood. She did not tell Irma to purchase a $20 blood sugar meter from the drugstore. She did not ask Irma about the frequency with which her daughter drank and urinated. And neither she nor Cabatic described to Irma the danger signs to look out for.

“Being that she has a family history of diabetes, I would be thinking that she would know the symptoms of diabetes,” Cabatic later testified in court.

Even after it was clear that Claudialee suffered from type 1, Mercado stood by her diagnosis. When later questioned in court, she disagreed with the notion that type 2 diabetes is uncommon in young kids.

“How many type 2 infant diabetics have you treated?” a lawyer asked her.

“A lot,” she replied. “Maybe it’s geographical, because I work at Brooklyn as an assistant professor and also in wellness program where there are a lot of obese children, so we diagnose a lot of children with type 2 diabetes.”

It’s tempting to assume that Claudialee received substandard care because of her family’s income status. Doctors don’t make as much money treating Medicaid beneficiaries, explains Jim Sheehan, former New York State Medicaid inspector general. A specialist earns as little as $30 a visit. By contrast, a pediatric endocrinologist treating someone with private insurance gets nearly $100 an hour. So Medicaid providers often have trouble filling their networks with enough doctors who specialize in common issues like diabetes. Patients are sometimes left to the lesser skilled or lesser known—doctors who can’t afford to turn away the business.

“Some specialties, they have a very tough time recruiting people to be Medicaid-based,” says Sheehan. “And so you’re not gonna say, ‘We want board-certified.'”

Though she’d failed to earn certification, Arlene Mercado had established a respectable career. She graduated from the University of Santo Tomas’s medical school in the Philippines in 1984 and spent much of the next decade treating poor people in rural villages. She came to the U.S. in the mid-1990s, interning at Harlem Hospital before beginning her residency at Pitt County Memorial Hospital in Greenville, North Carolina. Her transition reflected competence: Foreign doctors must complete a rigorous testing process to become licensed here.

After two years of endocrinology training at the National Institutes of Health, Mercado took a position as a senior fellow at Mt. Sinai Hospital in Manhattan. In 2006, SUNY Downstate hired her as an attending physician. Two years later, she was named associate medical director of the hospital’s wellness program for obese and diabetic patients. (SUNY did not respond to interview requests for this story.)

By the time Mercado treated Claudialee, a good number of experienced doctors had vouched for her. She’d co-authored at least seven academic papers in peer-reviewed journals. Multiple private insurance companies added her to their networks. Over the course of her career in New York, she sustained a spotless record. Not once had the Office of Professional Medical Conduct, an investigatory division of the New York State Department of Health, taken disciplinary action against her.

Shortly after sunset on January 23, 2010, Irma and Napolean sat in the waiting room at New York Presbyterian Cornell Medical Center. Claudialee had been transferred there a few hours before. Family and friends surrounded the parents.

A doctor approached and explained what was happening to their daughter. Claudialee’s blood sugar had been rising for months. Because she didn’t have enough insulin, her body burned fatty acids as an alternative fuel source. As those acids accumulated, they poisoned her body, and its systems began to shut down. The resulting nerve damage allowed fluids to seep into her brain, causing it to swell and pushing her further from consciousness. Twice that evening, doctors had had to resuscitate Claudialee. Now only machines kept her alive.


There was almost no chance she would recover.

That reality was dawning on Irma. She’d tried to stay optimistic, to stay strong for her only child. She’d dedicated herself to building a life for her daughter. She thought she’d done everything right. Coming to America. Working the long hours that might pull them up the economic ladder. Signing the girl up for dance classes and after-school tutoring sessions. And all those doctor visits. She wondered what she should have done better.

She felt guilty and betrayed. She’d put her faith in the healthcare process and it failed her.

Irma asked about organ donation. The doctor told her that wouldn’t be possible. Her daughter’s organs were damaged beyond repair.

The family members entered Claudialee’s room and said their goodbyes.

On a summer afternoon, the waiting room of Downstate Pediatrics Associates is filled with nearly two dozen people. There are babies in strollers, parents reading magazines, and grade-schoolers playing tag. There are giggles and stomps and adults saying things like “give that man his sunglasses back” and “take that sticker off your face.”

A reporter approaches the front desk and asks to speak with Dr. Arlene Mercado. The receptionist goes to get her.

It has been a rough few weeks for Mercado. In July, a jury found her 100 percent liable for the death of Claudialee Gomez-Nicanor. (Cabatic, also a defendant, was cleared.) In her testimony, Mercado admitted to having thrown away her original notes from Claudialee’s treatments after learning she had been subpoenaed. Before discarding them, she typed up copies for the court. The new version indicated that she had intended to administer a blood test at Claudialee’s next appointment in January 2010, days before the girl’s death.

But Irma had been meticulous with her daughter’s medical documents. She’d kept the appointment card for their next visit, which wasn’t until February 23.

Jurors awarded Irma $100,000 for economic loss, $400,000 for her daughter’s pain and suffering, plus $7.5 million in punitive damages for Mercado’s malpractice. “It’s not covered by insurance,” Judge Darrell Gavrin pointed out at trial. Gavrin has yet to make a final judgment on the total sum Mercado must pay.

It’s unlikely that Mercado has to worry about a state sanction. Historically, the Department of Health has doled out punishment only once it recognizes a pattern of misbehavior or incompetence. (The department did not respond to interview requests.)

“There are many physicians who have been sued and lost a malpractice case and are still practicing,” says a New York government official who works closely with the medical industry and was not authorized to publicly discuss the subject. “The Office of Professional Medical Conduct will take a look at trends, as opposed to an isolated incident.”

Staten Island cosmetic surgeon Robert Cattani, for instance, tallied 40 malpractice suits before the state revoked his medical license in September 2012. Another plastic surgeon in Brooklyn didn’t lose his license until regulators found negligence on seven occasions.

Between 2001 and 2011, according to a USA Today investigation, of about 400 doctors who had their clinical privileges reduced or revoked by a medical institution in New York, more than half had never been assessed a single state penalty.

Mercado still runs a private practice. She still serves on the SUNY faculty. So it’s understandable that she’s reluctant to discuss the case. She stands at the door that separates the waiting area from the treatment rooms, holding it halfway closed like a reluctant homeowner talking to a salesman.

“I did my best for this patient,” Mercado says. “I know in my heart that I did everything for this patient.”

She declines to go into specifics or answer any questions.

“I’ll just stay silent on this, because God knows best,” she says, pointing to the ceiling with both index fingers.

Then she closes the door. Her afternoon schedule is full. There’s a roomful of patients awaiting treatment.


The Ruling That Could Change Everything For Disabled People With Million-Dollar Trusts

When Judge Kristen Booth Glen walked into her Manhattan Surrogate’s courtroom one day in 2007, she had no idea she was about to challenge the nation’s top banks on behalf of tens of thousands of disabled people.

Before her stood lawyer Harvey J. Platt, who was petitioning to become the legal guardian of Mark Christopher Holman, a severely autistic teen who lived in an institution upstate.

Holman had been left an orphan nearly three years earlier after the eccentric millionaire who adopted him passed away. According to doctors, he had the communication skills of a toddler, unable to bathe, dress, or eat by himself.

But before Judge Glen would grant this seemingly perfunctory petition, she had a few questions for Platt.

“How often have you visited Mark Holman?” she asked the lawyer.

“Since his mother died, I have not visited him,” said Platt.

“And when you say you haven’t visited him since then, how often had you visited him prior to that?”

“I haven’t seen him since he was eight or nine,” responded the lawyer. “His mother used to bring him to our office with his brother, just to show him my face and so forth and so on, so I haven’t seen him probably since 1995 or 1996.”

It was around that time that Platt helped Mark’s mother, Marie Holman, draft her will and create trusts for him and his older brother. A decade later, when she was dying, Platt promised Marie he’d apply to become Mark’s guardian.

“And have you visited the institution which he currently resides in?” Glen asked.

“No, I intend to, but I have not as yet,” Platt said, sounding weary. “I don’t think even a visit has much significance anyway. He’s totally nonverbal—he’s never spoken a word. He’s potentially aggressive.”

This didn’t sit well with Judge Glen. When it came to signing away the rights of disabled people to guardians, she was perhaps the most cautious judge in New York. But what came next would floor her.

Platt informed her that Mark’s trust had reached nearly $3 million. But while his trustees—Platt and JP Morgan Chase—had collected thousands of dollars in commissions, they hadn’t spent a penny on Mark. Medicaid covered his basic care at the institution upstate, but neither the lawyer nor the bank had considered how his mammoth trust might further aid his quality of life.

“Whether there is a cure for his autism or not, the question is: Are there things that could make his life more pleasurable or fulfilling?” Glen asked. “If somebody took him out to the movies once a week, or somebody took him out to lunch, or what he really likes to do is watch football—I don’t know. There’s always something that could make people happier, and I don’t think you could know that without really visiting him and knowing what’s going on.”

As she spoke, Glen could not have predicted that the case would become a five-year obsession for her. Or that she was about to disrupt a lucrative trade in which some trustees sponge commissions off wealthy disabled people—while doing little to enhance their care.

“They’re lazy pieces of shit,” says Glen. “It’s a business. They collect their commissions, and they think their only responsibility is to invest the money and keep the money safe with no regard for the beneficiary.”

Special-needs trusts hold billions of dollars around the country. The funds are set up to benefit people with chronic disabilities, while typically allowing them to keep government benefits like Medicaid. But there’s little oversight to ensure that trustees are spending the money properly—or even spending it at all.

“We see a lot of trusts that sit dormant,” says Edward Wilcenski, a New York lawyer and former president of the Special Needs Alliance, a national network of attorneys. “It’s not uncommon that over a period of three, five, 10 years we don’t see distributions made, but we see the calculation of commissions.”

The trusts number in the tens of thousands and are held by a long list of banks. Wells Fargo, for example, has more than 1,000 trusts with a total value of more than $1 billion. And as more people with disabilities live longer, their value continues to grow.

They’re usually funded with an inheritance or court settlement. But in order for beneficiaries to stay Medicaid-eligible in New York, trustees must have absolute discretion over their money.

The problem: There are virtually no rules governing whether trustees are spending in the best interests of their clients. Worse, the courts can only review these cases if someone complains.

“If someone is severely disabled with an institutional trustee, that person’s not going to come to court,” Glen says. “There’s nobody who will, and that’s what’s really scary about it.”

Marie Holman, Mark’s adoptive mother, grew up on a muddy dairy farm in Jefferson, Ohio. The family was poor, even by Great Depression standards, recalls niece Sharon Awad. Marie and 11 siblings shared a farmhouse without plumbing.


Marie looks tall and thin in family photos, with sunny blond hair and a cute bulb nose. She kept her fingernails long and red, even while she helped milk the cows.

During World War II, she managed to get a job as a general’s secretary. Afterward, she ran off to Hollywood with her younger sister Betty to become an actress. When that didn’t work out, Marie moved to New York, got a nose job, and became a professional dancer and runway model. She lied about her age and stayed on the catwalk until she was 40, long after most models age out.

She fell in love with a wealthy Jewish businessman named Charles Holman. Marie never told her Catholic parents about the marriage. Even Betty Brooks, Awad’s mother, didn’t quite know what her sister’s husband did, except that he did it well.

When Marie came back to Ohio for weddings and funerals, she looked as if she’d gotten lost on the way to a gallery opening. In family photos, she stood a head taller and several sizes slimmer than the other women, one foot pointed in front of the other as if posing for a photo shoot. She wore her platinum-blond hair in a poofy bun and layered on thick mascara. She always wore black.

Soon after she married, Marie had
a miscarriage, then discovered she couldn’t bear children. Sorrow hung
over the couple.

Marie found satisfaction in work, putting herself through secretarial school and working her way up to office manager in a prominent investment bank. Her boss took her under his wing, and she learned to invest when it was something women didn’t do. She made her own fortune betting on stocks like Johnson & Johnson.

In the late 1980s, when Charles was dying, he told Marie that he didn’t want her to be alone, that she should finally have the child she always wanted. Marie went to an adoption agency soon after he died. She told them she was 47, by then a rather wild claim. When they said no, Marie decided on an under-the-table adoption.

Faking her age again, she found a lawyer who would broker a deal: $15,000 plus hospital bills in exchange for a poor woman’s newborn. In the end, the woman took the money and ran. Marie was heartbroken.

But she didn’t give up. The lawyer found another poor couple burdened with drug addiction and too many children. This time she got a little boy, whom she named Charles. Marie was 66.

She raised the child in her rent-
controlled Upper West Side apartment, decorated floor to ceiling in lavender. She could afford much better, but she was raised with frugality. She wouldn’t replace a holey shag rug until she tripped on it.

A year later, Marie got a call from
the lawyer. Charles’s birth mother was pregnant again. Did Marie want a brother for her son?

Mark was a good-looking boy with
olive skin, dark hair, and a big smile. He looked Greek or Italian, but he was born with an enlarged head. Marie knew he’d have challenges. She took him home when he was five days old.

Though a nanny changed and bathed him, Marie spent all of her free time with Mark, taking him to the park or doing exercises to improve his memory and communication skills. The boy was diagnosed with autism when he was seven. Doctors later discovered a seizure disorder, and that Mark was missing part of his brain. Marie took him to countless specialists and spent lavishly on treatment. Mark wouldn’t learn to speak, but he pointed and made sounds to let Marie know he was hungry or wanted something. When she smiled, he smiled back. “I know he
understands me,” she would say.

When Mark was around nine, his mother sent him to an expensive special needs school. She fought to have the government pay the costs and won, according to Awad. When Mark traveled on the school bus alone, Marie gushed with pride.

She didn’t like to think about old age and death. But when Marie was in her 70s, her sister convinced her to face facts. Mark was only seven. What would happen to him as an orphan?

In 1995, Marie went to a talk on estate planning at a Manhattan hotel. The speaker was Harvey Platt, an estate lawyer who had written several books on trusts. Then in his 60s, Platt co-chaired a trust for the New York State Association for Retarded Children, the nation’s largest nonprofit supporting people with intellectual disabilities.

“The selection of the trustee can be in many instances the most difficult part of creating a trust,” Platt wrote in Your Living Trust and Estate Plan, now in its fourth edition. “The trustee must not only be willing and able, but must be familiar with the beneficiary and his or her needs.”


Marie approached Platt after the lecture. His face was framed by thick, oval glasses, and he had the manner of an old-fashioned family attorney. Platt agreed
to help Marie create trusts for Mark and Charles. When she died, her sister would become Mark’s guardian, with Platt as
a backup.

Income from Mark’s trust was to be spent on his “care, comfort, support and maintenance.” Marie also authorized them to give money to “any facility he may be residing in and/or to any organization where he may be a client or a participant in any program(s).” And if Marie and Brooks both died, Platt and JP Morgan Chase would take over as trustees.

Marie’s health would take a turn for the worse. In 2000, she tripped on ice and hurt her back. She never walked again.

Soon after, Brooks convinced Marie to move to a bigger place. She bought a corner condo in Trump Place. She placed a red leather sofa in the living room. Above it, she hung a painting of herself in a black evening gown, her trademark bun high on her head.

In 2003, Marie was diagnosed with terminal cancer. Unable to care for Mark, then 14, she placed him in the Anderson Center for Autism in upstate New York. The nonprofit institution, which had been around for nearly 80 years, provided housing, schooling, and life-skills training.

Within two years, Marie was in the hospital. She was 85, and her trademark bun had grown disheveled. Streaks of mascara gave her raccoon eyes. She died in 2005 in the Florence Nightingale Health Center in Harlem, almost 10 years to the day after signing her will. Her estate was worth $12 million.

Since Brooks had died the year before, Platt and JP Morgan took over Mark’s trust. The next year, fulfilling what he called a “deathbed” promise to Marie, Platt petitioned to become Mark’s legal guardian.

The petition didn’t find a warm reception in Judge Glen’s courtroom. When she heard that Platt hadn’t visited Mark, inquired about his needs, or spent any money on him, she adjourned the hearing. She then summoned JP Morgan to court to hear the bank’s side of the story.

In October 2008—during the heart of the banking crisis—a JP Morgan representative appeared before the judge. Why hadn’t the bank inquired about Mark’s needs or spent the trust funds on him? Glen asked.

“We’re a bank,” Glen remembers the representative responding sheepishly. “What are we supposed to do? We don’t know anything about people with intellectual disabilities and what they need.” (JP Morgan declined comment on the case.)

“You hire people to manage people’s money,” the judge replied. “Hire people to find out what they need.”

Glen ordered Platt and JP Morgan to visit Mark, meet with his caregivers, and figure out how the trust could be used to fulfill his needs—or hire a professional to make recommendations.

Families are often urged to hire banks to safeguard their children’s trusts. A few institutions, including Wells Fargo and Merrill Lynch, have specially trained officers. But many have little expertise in actually helping the disabled.

That leaves people like Mark to slide under the radar of trust officers handling hundreds of funds, says Mark Haranzo, a partner at the New York law firm Withers Bergman. “The squeaky wheels are getting the attention and the silent ones are ignored,” he says.

“Someone makes a judgment based on their own personal value system about whether someone needs something, and they never bother consulting a professional who understands quality of care and the bigger picture,” says Ann Koerner, president of National Care Advisors. “If the trustee’s not consulting with family or social workers or case managers or advocates for the client, they’re probably not going to be making the best decision.”

In some cases, Koerner suspects, banks pay out less than they should because commissions are based on the value of the trust. Big financial institutions may also not have the structure in place to pay for small, daily expenses.

“JP Morgan probably does a very good job in terms of being a responsible steward and investing, but it would probably be difficult for them to give that type of attention to think about ordering clothes for someone, paying a cable bill, getting a computer for them,” says Kelly McDonald of Secured Futures Trust, a Phoenix, Arizona, nonprofit.

Ideally, the guardian and trustee serve as checks on each other. But in Mark’s case, they were one and the same.

The Anderson Center for Autism sits on a sprawling, wooded campus near the Hudson River in Staatsburg, New York. Mark had lived there for five years by the time Robin Staver, a professional care manager the trustees hired, visited him two months after JP Morgan and Platt appeared in court.


Mark, who was 20, wore earmuffs to block noises that to him seemed painfully loud. He had dark, almond-shaped eyes, a delicate nose, and pouty lips that opened into a bright smile.

Staver had been a care manager for older adults and disabled people for two decades. Before she came to assess Mark’s needs, no one had visited him at the school since before his mother died, and he’d never left the institution. When most residents went home for Christmas, Mark stayed behind. Anderson had no idea the young man was the beneficiary of a multimillion-dollar trust.

Mark needed help with basic tasks, like brushing his teeth and getting dressed. He didn’t speak, but he seemed to respond to questions by using picture symbols and gestures.

Mark’s medication may have actually made him worse, Staver discovered. Keppra, his anti-seizure medicine, has side effects that increase aggression. Mark would often spit, throw things, or hit himself, and had to be closely monitored. There was a time-released version of the medication with fewer side effects, but it wasn’t covered by Medicaid.

The trustees agreed to pay for some of the items Staver recommended, including a computer, headphones, clothing, and gift certificates for restaurants. They also hired Staver to assess Mark four times a year.

In June 2009, Glen was finally ready to appoint Platt as Mark’s guardian, but with strings attached: He would have to report to the court every year.

New York’s guardianship law for intellectually disabled people, known as Article 17-A, is one of the nation’s few that doesn’t require periodic judicial review. “If a guardian was appointed 15 years ago, we have no idea whether the kid’s dead, alive, tied to a mattress in their own crap,” Glen says.

Mark, Glen wrote in her opinion, could have remained completely isolated in an institution without his resources being spent to help him reach his potential. From now on, she decreed, all guardians appointed in Manhattan would have to
report annually.

Glen didn’t stop there. She wondered how many Marks were out there, and how many trustees were getting away with not spending money on them.

By chance, another special-needs case had come across her docket that year. A severely disabled woman had a large fund managed by a corporate trustee. It seemed no one had evaluated her for years, so Glen sent a guardian ad litem to visit her. She lived very comfortably, with a full-time caretaker and chauffeur. But Glen found out that the woman never went outside because she couldn’t hold her head up. The trustee never visited her and had no idea she needed a wheelchair that could support her head, or that such a wheelchair existed.

“They were spending a lot of money, but they weren’t spending money in a smart way,” Glen says.

That same year, Glen ordered Mark’s trustees to open their books.

In 2010, Mark moved into his own room at the Anderson Center. During the day, he exercised and worked on communication and vocational skills, like sorting and packaging. He didn’t do well with change, and at first he hit staff and himself.

But soon, Staver noticed improvements. Mark had made “significant progress” using pictures to convey words, sentences, and questions. For the first time, he could dress himself, eat with regular utensils, and drink from a cup. He was still aggressive, but he was also playing outside with a ball, watching videos, and eating at restaurants accompanied by caregivers.

“He smiles and will reciprocate gestures such as high fives or handshakes,” Staver wrote. (She declined comment on this story due to a confidentiality agreement.)

A year later, Mark no longer needed a safety harness to restrain him during van rides. He could now brush his teeth without help, take laundry in and out of the washing machine, put his plate in the dishwasher, and review his daily schedule. He was using a trampoline, reclining bike, and Nintendo Wii the trustees had bought him, and his Xbox helped him interact with others. He left the facility to eat in restaurants, go bowling, get haircuts, and shop. Staff began planning a vacation to Disney World or the Autism on the Seas cruise.

By 2012, Mark was showering independently. He liked dressing up before eating out and buying a drink for himself after walking a trail. Using new communication devices, he chose the foods he wanted for dinner. For the first time, he could use sign language to say “apple” and “cracker.”

One day, as Staver left Mark’s classroom, she waved and said, “Bye!” Mark had never spoken in his life, so she expected no reply.


But this time she didn’t hear gurgles or inscrutable sounds. Instead, she heard him utter his first word: “Buh!”

In late 2012, as Glen neared mandatory retirement at age 70, she decided to follow up on Mark’s case. She discovered that it had been two years since the trustees filed documents showing how they’d managed Mark’s trust.

The trust was now worth $3.6 million. In the five years after Marie’s death, Platt earned more than $26,000 in commissions, and JP Morgan received more than $52,000. But through March 2010, they had only spent $3,525 on Mark after Glen intervened.

In December, on her last day as a judge, Glen wrote her final chapter in Mark’s case, which had implications that would reach far beyond him. She ruled for the first time that banks and other trustees have to figure out what disabled people need and spend money to improve their lives.

Like many of her opinions, this one was unusually detailed, reading more like a novella than a court record.

“The history reveals a severely disabled, vulnerable, institutionalized young man, wholly dependent on Medicaid, unvisited and virtually abandoned, despite a multi-million dollar trust left for his care by his deceased mother,” she began.

According to Glen, in the four years since trustees hired Staver and attended to Mark’s needs, the intervention “has dramatically improved the beneficiary’s quality of life and his functional capacity to enjoy what is now a near ‘normal’ existence in the community.

“It is not sufficient for the trustees to simply safeguard the Mark Trust’s assets; instead, the trustees have a duty to Mark to inquire into his condition and to apply trust income to improving it.”

This wasn’t just about Mark: It was a “clarion call” for all special-needs trustees, she wrote. “Courts will intervene not only when the trustee behaves recklessly, but also when the trustee fails to exercise judgment altogether.”

Glen’s decision sent ripples through the banking industry and disability rights community.

“There’s a lot of discussion going on in the banks about what to do,” says Glen, who hopes they will now educate trust officers or contract outside professionals. “They’re now being called to task. If you don’t know anything about it, hire somebody or don’t take the job.”

Glen’s decision doesn’t fix gaps in oversight, but it gives advocates and judges around the country something to point to when assessing what trustees must do.

“It’s not going to be pretty, because
it creates an affirmative obligation on [banks] to actually do something,” says Bernard Krooks, who chairs the special-needs practice at the law firm Littman Krooks. “Typically, they just invest
the money and try to obtain a decent

In her opinion, Glen demanded that JP Morgan and Platt provide an updated accounting of Mark’s trust. She also recommended that both have their commissions denied or reduced.

“This is very upsetting to me,” Platt says. Now 81, he sounds exhausted when he speaks of Mark’s case from his Upper East Side office.

“I never gave her any reason to have such a harsh opinion,” he says. “It’s not pleasant, especially with the career that I’ve had, and I’m going to make sure that I continue to do what I’m doing. I will never, ever let anyone criticize me.”

His delays in visiting Mark and filing paperwork were largely due to health problems, he says. Platt cared for his ill daughter, who died in 2007, and his wife, who was sick for seven years before she died in 2012. He, in turn, has been treated for leukemia and prostate cancer.

“I don’t disagree with [Glen] that more trustees should become more proactive in what they’re spending, but I think the forum is wrong,” Platt says. “All she’s doing is requiring legal fees to be paid, and I think that she’s gone too far.”

In two affidavits Platt filed earlier this year, he said that Glen and Staver took undue credit for improving Mark’s condition. “While Ward’s improvement or progress was and is ‘heartwarming’ and a miracle, according to the staff at Anderson, this was based upon Ward’s maturing through adolescence rather than any changes in ‘medical’ treatment,” he wrote. “While we credit Judge Glen for her concern and causing the appointment of a social worker, the facts show Ward’s improvement was caused by a higher power.”

In addition, Platt argued, “If there be fault in the delayed reevaluation and possible changed treatment, it must be shared by society.”

In other words, Anderson or even the court may have been at fault for insufficient treatment prior to his appointment as guardian.

Nearly five months into her retirement, Glen sits at the neighborhood diner where she orders “the usual”: bacon, scrambled eggs, and sliced tomatoes. She’s now a professor at the City University of New York School of Law, where she was once dean, and has spent the last few months speaking about Mark’s case and others at events around the country.


She dismisses the idea that Mark improved simply because he grew older. “Had he not gotten these interventions, he would not be in that situation.

“When you think about an institution that gets the shit payments they get from Medicaid, they do their best,” she says. “But they can’t do one-on-one. They can’t carefully teach somebody to use a communicative device. They can’t take people out to restaurants. The more somebody interacts with the community, the more they’re allowed to exercise their choice, the more they learn how to make decisions.”


Test Pattern

All new parents await the day when their little wonder says his or her first word. “Up.” “Mommy.” “Dad.” “Cookie.” Melissa and Louis Orlando waited anxiously for their twins, Jack and Matty, who were born several weeks early, to speak. But on their first birthday, by which time most kids have talked, Jack and Matty hadn’t. At 18 months, there were still no words, and Matty wasn’t making eye contact. The Orlandos wondered if there was something wrong, and there was.

Evaluations found that the boys share something other than their birthday—a condition called pervasive developmental disorder not otherwise specified, or PDDNOS, which is related to autism. Now the boys each get 20 hours of help a week from seven different specialists, including occupational therapy, speech therapy, and special instruction—all under a city program called Early Intervention that last year helped around 18,000 children with everything from speech impediments to cerebral palsy.

Until last month, some 140 agencies had Early Intervention contracts with the city to evaluate children with suspected problems, provide their therapy, and manage their cases. But then the city told 38 of them to stop evaluations and instructed nine others to cut back on their screenings, although they can all still provide therapy.

The city says some of the agencies they cut processed kids too slowly, or examined too few, but the main problem was that the agencies didn’t serve enough low-income people. “It’s really our obligation, and sort of mission, to reach out to families who find it hard to access the system, and that would seem to correlate well with low income,” says Margo Amgott, the health department’s assistant commissioner for early intervention. “We know that we don’t get proportionate numbers of referrals from poor neighborhoods in New York.”

But the agencies whose contracts weren’t renewed detect a different motive: money. The intensive services that kids like Jack and Matty receive aren’t cheap: The city spends about $100 million a year on early intervention. Medicaid reimburses the city for the expense of these services for its clients. Private insurance companies often don’t reimburse the city. “Insurance companies have for many years—I think nationally but I understand particularly in New York—not participated in paying for these services,” says Amgott. “Private insurance should pay its fair share for services that it contracts with its members to provide.”

So by shifting Early Intervention toward low-income clients likely to have Medicaid, the city stands a better chance of getting paid back. And by cutting off the agencies most likely to evaluate middle-class families, the health department can achieve such a money-saving shift.

A City Council budget analysis says that’s just what the health department aims to do—shift costs to Medicaid. But Amgott denies that financial pressures are behind the move to winnow the evaluation contracts. Either way, the move looks at first glance like a win-win: better service for the poor, and less expense to the city. But one question is whether fewer, larger agencies will do as good a job screening kids. Another is what happens to special-needs children whose middle-class families live in the areas served by agencies that got the ax.

Early Intervention is the city’s way of meeting requirements established by a 1986 federal law and a subsequent state measure signed by Mario Cuomo in 1992. The Department of Health and Mental Hygiene runs the program for kids up to age three, after which their care becomes the responsibility of the school system’s special-education classes. Early Intervention “supports infants and children with developmental delays in their efforts to realize their full potential,” the DOH&MH website reads. “It reduces the likelihood of delays among at-risk children, assists and empowers families to meet their child’s and their own needs, and entitles children, regardless of race, ethnicity or income, to services through the program.” People active in the city’s program say it is a national leader in the field.

Most kids are referred for Early Intervention evaluations by physicians who notice some delay in speech or physical skills. Others with more serious conditions, like Down’s syndrome, are diagnosed at birth. Each child gets a multidisciplinary evaluation by a team of specialists, and kids who qualify by demonstrating impairments in multiple areas of development get the therapy.

The evaluations themselves aren’t lucrative for the agencies: Depending on the kid, they run about $700 a pop. Nor are they rubber-stamp affairs: David Mosesman, executive director of the Gingerbread Learning Center, a special-education facility on Staten Island, says he denies about half the families that come to him.

The evaluations require a skilled touch. The severity of Jack Orlando’s condition, for example, was missed at his first evaluation. Then he was screened by Dr. Elise Vetere, a neuropsychologist who runs Early Start, a small agency based in Bay Ridge. She determined that Jack needed more help, and now he’s getting it.


On the side of the refrigerator in the Orlandos’ kitchen is the weekly schedule of visits—blocks of time each day when some specialist comes to work with Matty or Jack. The parents aren’t sure if their insurance company has reimbursed the city or not. “What we get, we could never afford. You can’t put a price tag on it,” says Louis. Their son Nicholas, now 5, also received Early Intervention therapy for Asperger’s syndrome.

Upstairs, Jack is playing bingo with therapist Angela Giudice. He picks a card with a picture of a window on it, then scans his game board carefully, tracing his finger over images of a fish, a boat, a bus, until he finds his match. As he plays, he’s practicing his pronouns and learning to ask questions. “One of the things we’re working on is language,” says Giudice. “He’s come a long—a very long—way. He couldn’t say a word when we started.” Now Jack is talking, but very quietly. Giudice says that’s because he’s still nervous about speaking. He also has a hard time with transitions, like getting out of cars and changing clothes. “Things that come naturally to some children don’t come naturally to him,” she explains.

Early Start is one of the agencies that won’t be doing evaluations anymore. Vetere says she was never told exactly why, but she suspects it’s because the clientele in her area of the city don’t usually have Medicaid. Other agencies sing the same tune. “Our clients have insurance,” says Ann Marie Volte, who runs the early-intervention work at Programs for Special Children, based in Staten Island. “We took who came.”

The city will still pay Early Start to treat kids like Matty and Jack, but without the ability to do evaluations, Vetere—who is organizing a protest against the cuts at City Hall on June 13—sees her client base drying up. “If you take away our evaluation contract, you’re cutting us off at our knees,” she tells the Voice. “We do believe it is the city’s way of downsizing.”

And the agencies who’ve been cut say there’s more at stake than their own survival. “I think it’s going to take children longer to get into the system,” says Volte. And time is precious. Take a kid with torticollis—a condition in which the head tilts to the side. “If that’s how you start to stand, that’s how you see the world,” says Volte.

Kids with problems who don’t enter the early-intervention system will probably end up getting special help eventually—and perhaps needing more—when they hit school. “If a child is serviced when the child is two we find that most of the problems a child has we can handle,” says Mosesman. “If a child comes in at five or six years old, the child’s going to be in the system much longer.”

The city says that despite the reduced number of providers, there are no delays facing parents who want evaluations. “We’re going to be serving the same number of children each year. They’ll just be evaluated by agencies who understand how to reach kids who otherwise wouldn’t get in the system,” says Amgott. “We’re totally assured that the needs of these families can be met by the remaining agencies.” The affected agencies handled about a sixth of the early-intervention evaluations done last year.

But critics argue that not all providers are equal. Both Orlando boys will start nursery school next year in different special-education programs. Giudice is confident that it will be Jack’s only year of special ed. The Orlando’s credit their small-scale provider for that success. “If they close all the small agencies, kids are going to fall through the cracks and get lost. PDD and autism, it just comes up on you,” says Melissa Orlando. “They lose things. They just start to lose skills.”

As Jack played bingo the other day, a loud voice in the next room kept calling “Matty! Matty!” It was speech therapist Mindy Pottheiser trying to get him to make eye contact from his seat directly in front of her. He was working for Doritos, earning one orange-dusted chip each time he followed an instruction like “Stand up” or “Turn around.” Sometimes Pottheiser stared intently at the boy to try to get him to make eye contact naturally.

Then they played a matching game. The deck was stacked with elephants of different sizes and colors to see if Matty understood their resemblance to each other. Other times of the week Matty might get massages or joint rubs, or wear a weighted vest. All the tactics are aimed at getting him to attach to the world, to connect him to the forces and feelings outside his skin.


“Every child is different,” Pottheiser says, “and we just assess and reassess and reassess what’s going to work.”


Blowback From Katrina

WASHINGTON, D.C.—President Bush’s very general proposals last week for recovery of the hurricane-devastated states is PR. As everyone must know by now, Bush never changes his position on anything. He just keeps going—celebrating the government workers who fought the hurricane, commiserating with survivors, and calling on God. In New Orleans he threw in a few gimmicks, like a homesteading lottery and a Gulf Opportunity Zone. Serious measures to confront the needs of survivors are fixed in the conservative ideological agenda. It broadly calls for removal of the last vestiges of the New Deal social-welfare programs and institution of free-market, survival-of-the-fittest economics. A serious effort at recovery must directly address at least three basic issues:

Health care: This situation is horrendous. The only vehicle for delivering health care is Medicaid. But in today’s aftermath of the storm, if you are, say, a 60-year-old man without income and suffering from heart disease, you would not be eligible for Medicaid assistance. The best you could do would be to try to find some emergency room or charity hospital to take you in on the theory that it might get paid back by the government in the future.

To qualify for Medicaid you must fit into several narrow categories: be 65 or older, seriously disabled, a child, or a parent of a child on Medicaid. Poverty isn’t the sole determining factor. The National Governors Association is asking the government to suspend these categories and make Medicaid available to every hurricane victim on a temporary basis, and the Senate, in a bipartisan move, is readying legislation to do that. But the White House is balking, refusing to drop the categories and insisting that each state come to Washington to negotiate a backroom waiver deal. Last week, the White House negotiated such a deal with Texas that maintained the categories the governors want removed. Because FEMA has not promised to reimburse states taking in evacuees, both Texas and Florida have begun denying benefits to them. That is a particular hardship for the many mothers with small children among the thousands of stranded victims. Some states do provide benefits. Whether you get covered depends on what state you are dumped into. Conservative Republicans have been trying to gut Medicaid for years, and they are wary of any foot-in-the-door maneuver. Still, the Senate may well enact this legislation. Then it’s up to the conservative Republicans in the House led by Tom DeLay.

Unemployment insurance: Many people along the Gulf Coast were without jobs before the storm, and the prospects over the next year are iffy. A building boom may produce local jobs, or it may result in importing workers from elsewhere. Louisiana had a 6.1 percent unemployment rate before Hurricane Katrina hit, and now hundreds of thousands are out of work. According to Labor Department statistics, 10,000 people in the affected region filed last week for unemployment benefits. Newsday reports, “The nation could lose as many as 400,000 jobs through the end of this year because of the destructive storm, according to estimates from the Congressional Budget Office.”

If the government doesn’t move fast to help Alabama, Mississippi, and Louisiana by refinancing their unemployment insurance trust funds, these hard-pressed states are likely to cut unemployment benefits overall and raise business taxes, worsening the situation, according to analysts with the Center on Budget and Policy Priorities.

Bush’s remedy for unemployment is to drop wages. He signed an executive order that lets states pay substandard wages for cleanup and repair work. Wages in Louisiana are already 19 percent below the national average. In Mississippi, average wages are $586 a week, 28 percent below the national average.

Housing: FEMA is not a housing agency, and its past experience with disaster relief in this sector revolves around small-scale provisioning of trailers, roof repairs, and help in paying mortgages. Bush now promotes the idea that victims can live on contracted cruise liners tied up in the New Orleans harbor. The most direct way to provide housing for hundreds of thousands of people is through existing Section 8 provisions. Under this program, the government pays landlords the rent for qualifying families. There are perhaps 100,000 housing vouchers already approved. But Congress has never funded them, so they are useless. Bush would have to take an active role in pushing for this funding.

In his speech last Thursday night, the president revived a perennial proposal for government assistance in the form of homesteading. In this case, evacuees could enter a lottery for vacant federal land. If you win the lottery, then you would have to demonstrate you had income to pay the mortgage on a home—impossible for most of these people.

The right-wingers are worried about overspending for the hurricane and somehow getting the country back into a New Deal frame of mind. They need not worry. The proposals above are short-term. As for paying for the recovery: Why not cancel, or at least defer, two tax cuts scheduled to take effect in January that offer no help for middle-class or poor people. For those making
$1 million or more, the tax savings would be in the neighborhood of $130,000.

More slick maneuvering

Bush repeatedly alludes to a shortage of crude oil, which he sought to mitigate by releasing part of the nation’s strategic petroleum reserve. (In last week’s speech, he acknowledged that the industry now is back on its feet and doing well.) In fact, there is no shortage of crude, but a surplus. The Petroleum Economist, in its September issue, says Ed Galante, senior vice president of ExxonMobil, addressed “the perception” earlier this year. The industry journal quoted Galante as saying, “Despite the number of refineries in the U.S. dropping more than 50 percent—from [a peak of] 325 in 1981 to about 150 today—total capacity has decreased by only 10 percent. [And] over the same period, refinery output is up by about 25 percent.”

Rather than build a slew of new refineries, the industry is pulling supplies from elsewhere around the world. Western Europe, which is moving more and more to diesel, is one growing source; Russia supplies refineries there, and fuels will also come from such places as Iran (with whom we don’t trade), Kuwait, and Saudi Arabia.

The Bush administration aimed to rely less on foreign sources, but in reality, its reliance will grow, not diminish. The one new American refinery on the horizon is scheduled for construction in Arizona’s Yuma County, not far from the Mexican border, by a private company called Arizona Clean Fuels (ACF).

“Up to now, it had been thought that U.S. environmental regulations made the construction of a new refinery impossible,” says Petroleum Economist, “but ACF disagrees. Glenn McGinnis, the firm’s chief executive officer, told Petroleum Economist last month that the Clean Air Act operating permit had been issued in April—after a four-year application process. The environmental-impact statement, for which the Bureau of Land Management is the leading agency, is under application.” The refinery will draw its crude oil from Mexico via a pipeline.

Additional reporting: Isabel Huacuja and Ali Syed


Bush to Rebuild New Orleans, Somehow

WASHINGTON, D.C.—President Bush’s vague promise from New Orleans on Thursday night to lead the nation in “one of the largest reconstruction efforts the world has ever seen” shied well clear of any specific action. Some estimates put the federal burden at $300 billion dollars, but the government isn’t set up to spend it well.

Disaster recovery in any case requires quick, comprehensive
health care, extended uniform unemployment insurance, and massive housing. Facing a disaster on the scale of Hurricane Katrina, he offered none of these. A few more doctors and nurses, a few more unemployment checks, a few trailers here and there won’t get the job done.

Instead, Bush offered a slew of gimmicky projects
such as yet another tax free zone—the Gulf Opportunity
Zone; worker recovery accounts, for job training and
child care, that sound very much like the account
schemes Republicans have struggled to get passed
as part of their privatization of Social Security; and
the urban homesteading on vacant federal lands—probably of dubious value.

FEMA is not prepared to provide housing on the
scale demanded by the Hurricane Katrina. In the past it has
helped pay mortgages, fix roofs and provide
trailers—nothing on the scale now needed. Housing
vouchers that pay landlords for the cost of modest
apartments are probably the best way to go. But while
HUD has approved numerous vouchers, there is not
enough money to actually fund the program.

The employment assistance to New Yorkers after
9-11 turned into a hopeless mess. If the government
doesn’t move fast to help Alabama, Mississippi, and
Louisiana, these hard-pressed states are likely to cut
unemployment benefits overall and raise business
taxes, worsening the situation, not making it better,
according to analysts with the Center for Budget and Policy
, a Washington, D.C., think tank.

The nation has no health-care system and no real
health-care policy. The destruction of
hospitals and clinics along the Gulf Coast and in New Orleans make the distribution of care a nightmare. Medicaid is the one operating
system. No matter how difficult, it simply must be made
to work for displaced people now. And this is no easy job, because the
administration has been trying to cut back on this
program ever since Bush got elected. Conservatives in
Congress—even now—look upon efforts to open up
Medicaid as just a foot in the door for the welfare
queens. As of today, there is some hope the Senate will embrace a
broad Medicaid expansion, albeit a temporary one, to appease right-wing ideologues.

Many people in New Orleans and along the Gulf Coast are without jobs, and overall the employment prospects in this region are dubious at
best. Louisiana had a 6.1 percent
unemployment rate before the storm hit, and now
hundreds of thousands of 1.9 million workers are out
of work. According to Labor Department statistics, last
week 10,000 people filed for unemployment insurance in
the hurricane region. Newsday reports, “The nation
could lose as many as 400,000 jobs through the end of
this year because of the destructive storm, according
to estimates from the Congressional Budget Office.”

Bush now has signed an executive order that lets states pay
substandard wages for cleanup and repair work. Wages in
Louisiana are already 19 percent below the national average. In
Mississippi, average wages are $586 a week, 28 percent below
the national average.

Additional reporting: Isabel Huacuga, Ali Syed


No Trust Fund? Try Food Stamps

Like thousands of other single women living in Bushwick, Brooklyn, Brigette, 24, collects Medicaid and food stamps. Unlike most of her neighbors, she’s white and a college graduate—the kind of welfare recipient rarely considered in debates over public assistance.

Brigette, whose parents and two sisters run a restaurant in rural Vermont, got her B.A. in film from Bard College, a top-tier liberal arts school in upstate New York. She moved to New York City about two years ago to pursue experimental filmmaking. As young self-styled bohemians have always done, she found a neighborhood with cheap rent and cobbled together a living from various gigs—in her case, waitressing and assisting more established filmmakers. The idea was to leave time for her own projects.

But then, two and a half months ago, she lost the job at the diner. Her two film posts together pay just $140 a week, and her rent is $600 a month, so things got lean quickly. Brigette was also missing payments on her $17,000 in student loans; she is now over $1,000 in arrears.

“I was really hungry—no food in my house, no money to buy food, my pants were all falling off, and I was like, something’s not working out here,” she says. “Then I got this raging ear infection.” With no health insurance, Brigette went to the emergency room and later applied for Medicaid to cover her bills. “I figured as long as I’m applying for this, I should go across the street and apply for food stamps.” After a six-hour wait at the office on Thornton Street, Brigette was awarded $147 a month, which she spends at her local C-Town supermarket on beans, rice, greens, and peanut butter. She went on to apply for Safety Net Assistance, New York’s cash-grant program for childless adults, but discovered it involved a mandatory job-training program. Now she’s looking for another 15-hour-a-week job.

Brigette is telling everyone she knows about the great new way for starving artists to survive in the city. Her (white) upstairs neighbor just got food stamps, and a friend who is a musician, hatmaker, and babysitter has been accepted onto the rolls as well. Applying for aid was “the best thing I ever did,” she says.

Slumming it is a venerable New York City tradition for emerging artists. But the idea of using welfare to support a long period of youthful exploration is not part of reality for the typical young Bushwick resident.

Brenda Batista, 18, has lived in this neighborhood since she came to the U.S. from the Dominican Republic at the age of eight. She and her grandmother are both on public assistance, like about one-fifth of the people in her City Council district, but Brenda doesn’t think it’s all that. “I don’t really like it, but it’s a help and we got to do what we have to do. I feel bad because sometimes they give me a hard time when I go to the welfare office.” Brenda also doesn’t like the work-first attitude legislated by welfare reform—the welfare office tried to hire her. “They told me that I should go to school at night and work for them in the day, but I told them I wasn’t going to do it. I’m only 18 and I want to finish my education.”

Brenda, a high school graduate, is now at Boricua College working toward her B.A. and, with luck, her master’s in social work. If she makes it all the way, she will join the 2 percent of Hispanic women in this country who attain an advanced degree. Merely graduating from high school makes her a rarity in her neighborhood and a minority among welfare recipients in New York State. “My college is across the street from the welfare office, so it kind of reminds me of where I could be,” she says. Brenda is also active in her community, serving on the board of the advocacy group Make the Road by Walking. She has ambitions for her community as well as herself.

“Bushwick, about two years ago, three years ago, it was only 1 percent white, and now in the empty places where we’d like to have parks, they’re building new houses we can’t even afford. White people are moving in because we have the train to Manhattan and it’s cheaper. It’s already overcrowded and they’re just adding to the chaos in the street. I think they should build houses for the people who live here.”

Brenda doesn’t hold anything against the people coming in; she just doesn’t understand why people with other choices would want to move to a place with roaches and peeling paint. To her, poverty is not exotic, and struggle doesn’t need to be simulated.


No Choice

WASHINGTON—When Bush says, “I’ve earned capital in this election and I’m going to spend it for what I’ve told the people I’d spend it on,” he’s not just talking about revamping the income tax and Social Security. It’s payback time for the Christian conservatives who gave him vital votes to win the election and then go on and call the win a mandate. They want cultural changes—what Bush himself calls the “culture of life,” and that starts with women’s place in society.

The administration already has sought to limit a woman’s access to abortion and contraception; to shut up clinics, individuals, and providers of abortion around the world; and to cut funds from women’s reproductive health services.

Now it’s time for more. Here’s a partial listing put together by the Center for Reproductive Rights:

• Get rid of Roe v. Wade through new Supreme Court appointees who think like Thomas and Scalia can knock out the ruling when given the chance. Bush will also fight lawsuits challenging the partial birth abortion law.

• Promote federal statutes and regulations that use the term “unborn child” to describe the fetus—opening the prospect of murder charges against doctors and their staffs engaged in abortions and women who have them

• Push for enactment of the so-called “Child Custody Protection Act” (CCPA), which would prevent teenagers from crossing state lines to get an abortion, and once enacted, enforce it, the Center says, “with intrusive investigatory techniques such as issuing subpoenas for private medical records, and aggressively prosecuting aunts, grandmothers, religious counselors, and physicians who counsel minors or assist them in obtaining abortions”

• Deny Medicaid funding for abortions

• Place new restrictions on funding abortion in cases of incest, rape, and where a woman’s life is at stake

• Restrict access to contraception and push new legislation to withdraw contraception coverage for federal employees (including military personnel)

• Continue to deny over-the-counter status to emergency contraception claiming it amounts to an abortifacient


Free and Low-Cost Health Care

Bad news: More than 1.8 million New York City residents (nearly one in four) do not have health insurance, according to a 2003 United Hospital Fund report. And nearly one in three adult New Yorkers were unable to get necessary health care when they needed it last year, says the Department of Health. With the least expensive private insurance premiums edging toward $400 per month, the price of a standard doctor’s office visit well above $100, and the proliferation of the full-time freelance job, many New Yorkers are taking a wait-and-see approach to sickness: Wait until you’re at death’s door and then see the bills skyrocket after a pricey visit to the emergency room.

The expense of modern medicine hits one group especially hard: those who earn too much to qualify for Medicaid (or whose off-the-books wages are unverifiable) but don’t get insurance through their jobs. This squeezed economic stratum includes waiters, messengers, baristas, salespeople, artists, and freelancers, to name a few, most of whom rarely see a doctor.

But it doesn’t have to be that way: Even without insurance, you have cheaper choices for a case of strep than a $300 emergency room visit. Many clinics will render services regardless of a patient’s ability to pay, or will use an income-dependent sliding scale to determine an affordable fee. To qualify for sliding scale, you’ll typically need to show proof of your income using W2s, paycheck stubs, or, if you have neither, a letter from your employer verifying your pay. If you’re near the bottom of the scale, you’ll probably get treated for a fraction of the full price. But beware of sticker shock: Sliding scales sometimes do not apply to prescriptions or lab tests, which could set you back hundreds of dollars. It’s best to ask before submitting to a test or filling a prescription.

If you do have proof of income, you may qualify for state-supported insurance. An estimated 40 percent of the uninsured in New York State are eligible for reduced-cost coverage through programs like Healthy NY (, 866-HEALTHY-NY)—monthly premiums run as low as $161, and the income threshold for a single person is about $22,000 per year—or free coverage through Family Health Plus or Medicaid. Checking out all your options could pay off.

The spectrum of services at RYAN-NENA COMMUNITY HEALTH CENTER (279 East 3rd Street , 212-477-8500, comprises general medicine, dental care, vision exams, counseling, and lab work, and they even have an allergist and a heart specialist on staff—all priced on a sliding fee scale. They can also help you qualify for insurance. The William F. Ryan Community Health Center also maintains clinics on the Upper West Side (110 West 97th Street, 212-749-1820) and Chelsea (645 Tenth Avenue, 212-265-4500).

Focused on the issues of the gay community but welcoming patients of any sexuality, the MICHAEL CALLEN-AUDRE LORDE COMMUNITY HEALTH CENTER (356 West 18th Street, 212-271-7200, offers dental, mental health, gynecology, and general medical services in a state-of-the-art Chelsea facility. Its community outreach programs include HIV-oriented adult support groups and special medical services for the 13- to 24-year-old set. Sliding scale. Call for appointment.

Every Saturday from 9 a.m. to noon, volunteer doctors and NYU med students offer consultations, physicals, lab services, radiology, and pharmaceuticals to the indigent and uninsured at the NEW YORK CITY FREE CLINIC (16 East 16th Street, third floor, 917-544-0735, 212-263-1001, Free. Call for appointment 4 to 6 p.m. on weekdays (Tuesday 6:30 to 8:30 p.m.), Saturday from 9 a.m. to noon.

Eastern medicine can help soothe arthritis, asthma, toothaches, depression, migraines, and more. At the PACIFIC COLLEGE OF ORIENTAL MEDICINE’S CLINIC (915 Broadway, third floor, 212-982-4600,, acupuncture interns, supervised by licensed professionals, can rebalance your chi for the reasonable price of $30 per session and/or prescribe some curative Chinese herbs from the in-house pharmacy. Appointment or walk-in.

The NYC DEPARTMENT OF HEALTH & MENTAL HYGIENE currently operates four STD clinics in Manhattan—three of them uptown (2238 Fifth Avenue, 212-690-1760; 158 East 115th Street, 212-360-5962; and 160 West 100th Street, 212-865-7757) and one in Chelsea—that provide anonymous, free HIV and STD testing, treatment, and counseling. The Chelsea clinic (303 Ninth Avenue, second floor, 212-239-1721,, in a nondescript brick building, offers the sort of institutional reception you might expect from a government agency, but anonymous and institutional care sometimes has its advantages. Call for information about the clinics’ hours.

Forget the dentist; it’s hard enough to see a doctor when you don’t have any money. Even people who do have health insurance often don’t have dental plans. But 90 bucks at the NYU COLLEGE OF DENTISTRY’S CLINIC (345 East 24th Street, 212-998-9800, can get you an initial checkup, a full series of X-rays, and an oral-cancer screening. Call for appointment. Reduced-cost services available.

Not all private physicians support the insurance-company-centric status quo. One such doctor, long celebrated on the Lower East Side as an ally to musicians, artists, and the uninsured, “DR. DAVE” ORES (15 Clinton Street, 646-435-0009, operates out of a storefront. Although his rates are posted in the examination room, he often concludes visits with working-class locals by asking them to pay as much as they can afford. Call for appointment.

Psychotherapy is notoriously expensive, with some shrinks charging hundreds of dollars an hour to unravel the mysteries of your ego, superego, and id. But psychoanalytic training institutes typically charge much less than that. Sessions at the THEODORE REIK CLINICAL CENTER FOR PSYCHOTHERAPY (150 West 13th Street, 212-924-7440) may cost you as little as $25, depending on your income. Sliding scale. Call to set up intake appointment.

A final word of advice: Do your homework while you’re healthy. Make a plan. Nothing can exacerbate an illness like financial stress. The ER must treat you, no matter the cost. But there are many places that want to help you get better without making you feel worse in the wallet.