HACKENSACK, N.J. — Three months after fleeing a Florida rehabilitation center, Amanda, a 24-year-old from Woodcliff Lake, N.J., was using heroin again. She stole her grandmother’s credit card, bought thousands of dollars worth of electronics and sold them for drugs.
Which is how Amanda’s parents came to spend a Friday evening this July driving across New Jersey, their strung-out daughter in the back seat, looking for a facility that could treat her.
“We called eight or nine places,” Amanda’s father, James, recalled. “Nobody had a bed. Nobody.”
Insurance wouldn’t cover detoxification in an emergency room, rehabilitation clinics wouldn’t take her until she was clean, but every detoxification unit had days-long waits for admission, James said. At a hospital in Summit, James encountered hallways full of “moaning and groaning” addicts waiting for beds and insurance clearance, he said. James was told at the front desk that if he paid cash, there might be a bed for Amanda the next morning.
A friend gave Amanda some Suboxone, a drug used to treat opioid addiction, so she could spend the night at her parents’ house. The next morning, they found a facility in Kearny that could take her.
Amanda’s story is typical. As heroin and prescription painkillers ravage parts of the state, at least a third of New Jersey addicts seeking treatment cannot get it. A shortage of treatment facilities, coupled with high costs and insurance hurdles, leaves tens of thousands each year without adequate or timely care, and their families scrambling for help. In 2009, the latest year for which state figures are available, at least 30,000 adults and 15,000 adolescents were turned away from treatment.
Thousands more do receive treatment, only to cycle in and out of emergency rooms and rehabilitation programs, their inpatient stints cut short by insurance plans, lack of cash, or relapse. Even the most comprehensive insurance plans tend to limit coverage of inpatient care to 14 days or less, leaving families to choose between paying thousands of dollars out-of-pocket for the standard 28-day treatment or pulling an addict out of care.
“There is without doubt a treatment shortfall in this state,” said Dan Meara of the National Council on Alcoholism and Drug Dependence, who estimated that some places turn away half those seeking treatment. “There is not enough funding, and there are not enough beds.”
And the situation is growing worse, placing a burden on the state’s hospitals and criminal justice system. Over the past five years, the number of emergency room visits for behavioral health issues has nearly doubled — much of that increase attributed to substance abuse. The number of drug-induced deaths is also on the rise, with hundreds throughout the state and thousands nationwide dying from prescription painkiller and heroin overdoses.
This surge, coupled with concern over crime and violence associated with drug addiction and mental illness, has spurred the federal government into action. Health-care reform is expected to extend substance abuse treatment benefits to 62.5 million more Americans by 2020. And on Friday, the Obama administration announced regulations that will require insurance companies to cover addiction and mental health care in the same way physical illnesses are covered.
But it will take time for these regulations, which do not extend to Medicaid managed-care plans, to become part of the health-care system, which is fraught with delays in all areas of treatment. With addiction — when even small gaps in treatment can mean relapse or death — these interruptions are demoralizing, terrifying and sometimes fatal.
In New Jersey, middle-class families may be hit hardest by the cost of addiction treatment. They often do not qualify for public services that serve the uninsured and indigent, and which can be more rigorous than private rehabilitation. Nor can they afford to pay out-of-pocket for treatment, which can cost more than $1,000 a week for private inpatient care.
“The middle class is the one that gets squeezed,” said Frank Greenagel Jr., recovery counselor at Rutgers University and chairman of a state task force on heroin and opiate addiction. “They have insurance, but maybe insurance doesn’t cover it all.”
Even families like Amanda’s that have resources — financial stability, good insurance, patience — find that it is extremely difficult to break the grip of addiction. By this summer, Amanda’s 27-year-old brother had already been through eight facilities, from California to Maine, for his addiction to prescription painkillers and heroin. James has estimated that he has spent $400,000, not including travel and legal expenses, on his kids’ addictions. They went through treatment centers so often that they now gets “alumni” discounts.
Take Judy Castiglione of Jefferson: She is $90,000 in debt after three years of trying to keep her son William off heroin. “Finding an open bed was almost impossible,” she said, and insurance rarely paid for it. In the meantime, she said, she was “Crazy Mom”: She had GPS built into her son’s car, monitored his phone and wound through downtown Paterson in a white minivan, armed with a baseball bat, searching for dealers.
Or Joe Sardonia, who works for the Monmouth County Parks Department, who said caring for his 20-year-old daughter, a heroin addict, has left him frustrated and broke.
“In most cases, when my daughter wanted help, she couldn’t get it,” Sardonia said.
And then there is Kim Kaupp of Mendham: Kaupp pretended to be his son, Jack, while on the phone with the insurance company, claiming to be high in order to secure treatment. Jack Kaupp died at age 26 in February 2012: His father found him in a Morris Plains welfare hotel, a needle in his arm.
Their stories, along with interviews with dozens of parents, clinicians and authorities, portray a broken treatment system that often compounds the misery of addiction. They show the challenges that New Jersey and the United States face in translating policy into effective and affordable care.
But there are also success stories: programs that work, addicts now sober. Officials at Bergen County public services try to find a bed for any resident who needs it. State officials are mobilizing to stem the tide of addiction. For the parents whose children have turned a corner, this is cause for hope and cautious optimism.
The path to recovery begins with detoxification. But even as more New Jersey residents — particularly suburban young adults — are seeking help for heroin and opiate addiction, fewer hospitals offer treatment.
Bergen Regional Medical Center now has the only designated detoxification facility in the county; its 54 beds are almost always full, with 12 to 18 new patients arriving each day, said Thomas Rosamilia, vice president for behavioral health services.
“There is nothing harder than sending somebody home without a bed,” he said. “You never know if they’re going to come back.”
The number of behavioral health cases in New Jersey emergency rooms jumped from 289,851 in 2007, to 521,518 in 2012 — an 80 percent increase, said Kerry McKean Kelly of the New Jersey Hospital Association. “The physicians and nurses in our ERs will tell you pretty consistently that substance abuse is a major contributor to the overall growth.”
Emergency rooms will stabilize patients and release them even though the patients have limited access to further treatment, Kelly said. Statewide, families and clinicians alike report that long-term inpatient and outpatient treatment programs often cannot take them.
“At that point, once you’re clean, where do you go?” said Sue Debiak, coordinator of the Bergen County Office of Alcohol and Drug Dependency. “It is astounding to me that people can’t get help. People are driving around looking for a place to put their son. You don’t see hospitals closing diabetes or cancer care services.”
From July 2009 to July 2010, state-licensed treatment facilities admitted 78,313 patients. In the 12 months before July 1, 2013, that number was nearly 85,000. Some 45 percent were for heroin and opiate addiction, more than any other drugs.
At the same time, the state’s expanding drug court program — which aims to treat, rather than incarcerate, certain drug offenders — is sending more people into mandatory care, further increasing the squeeze in publicly funded treatment centers. Officials say the 102 state treatment facilities may be near a saturation point.
Jennifer Kaupp said finding a bed for her son, Jack, was a “full-time job.” The Kaupps spent upward of $300,000 on a “merry-go-round” of treatments for Jack, maybe 10 percent of which was covered by insurance.
“They know you are desperate, they know you will do anything,” said Jennifer Kaupp. “You are watching your kid kill himself.”
In the end, the Kaupps let Jack go — he spent his last months homeless, moving between shelters and charity facilities.
“The professionals said you cannot keep enabling him,” Kim Kaupp said. “Just let him hit bottom, and he’ll eventually come back.”
“But he never did,” said Jennifer Kaupp.
Judy Castiglione still weeps when she remembers reporting her son, William, to the police. And how he cried out for her as he was led down the driveway in handcuffs. “Part of me regrets it because now he has a felony record,” Castiglione said. “But part of me doesn’t because I think he would be dead today.”
The criminal justice system is now seen as the best way to get somebody into treatment, parents say — especially drug courts, which are tough and thorough.
“In New Jersey, the only way to get help is if you commit a crime,” said James, whose son is now in the drug court program.