Who will treat the flood of Obamacare Medicaid patients?

If you want to understand Medicaid's problems in New Jersey, just ask the Holstein men.

Justin Holstein, 39, of Ocean Township, spent a year on the government health insurance program when he was starting his own business. Long under treatment for chronic migraines, he lost all his doctors the moment he enrolled.

His new doctor said only a neurologist could renew his medication, but the insurance network's neurologist couldn't see him for four months, he said. That meant four months of sleepless nights battered by pain, and four months of getting through the days courtesy of the caffeine in Excedrin.

"You have a card saying you have health insurance, but if no doctors take it, it's almost like having one of those fake IDs," he said. "Your medication is all paid for, but if you can't get the pills, it's worthless."

Richard Holstein, his father, is a Long Branch psychologist who has watched his son struggle to get care. Yet he no longer accepts Medicaid in his own practice because the managed care payment of about $40 is half of what regular insurance pays, and a quarter of his full fee, he said.

"I'm still listed as participating, but I no longer take patients," he said. "I won't."

He's not alone: A survey he helped conduct for his professional association showed fewer than one in 10 psychiatrists or psychologists in New Jersey accept Medicaid.

New Jersey's health care safety net for poor families -- called NJ FamilyCare -- was strained even before the Affordable Care Act offered states money to expand Medicaid. The rate it pays doctors is among the lowest, relative to Medicare, of any state in the nation, according to the Kaiser Family Foundation.

As a result, only 40 percent of the state's doctors participate in the program, according to a 2012 survey by Health Affairs.

Yet the network will now have to handle a surge of nearly 400,000 new patients who have enrolled since the beginning of Obamacare in 2013 -- a jump of more than 30 percent, to nearly 1.7 million state residents.

Medicaid, signed into law in 1965 by President Lyndon B. Johnson, initially covered poor mothers and children. Under Obamacare, 28 states have expanded it to cover struggling single adults and couples without children.

Adding to patients' difficulty in finding care are the insurance companies' list of providers, which are misleading at best, maddeningly inaccurate at worst. NJ Advance Media called four types of specialists in Somerset and Essex counties, using the five Medicaid managed care plan lists. We found:

• Disconnected phone numbers.

• Doctors who had retired.

• Doctors who have moved to different locations -- or even to parts unknown. Receptionists told us: "They were never here," "He's no longer with this office," "He used to be here -- a long time ago," and "We don't have any doctor by that name."

• Doctors who take Medicaid at a different office in another county, but not at the office listed.

• A cardiologist practicing in Newark and Union City who is listed -- erroneously -- as working at a psychiatric clinic in West Orange.

• Doctors who don't take the plan under which they're listed. "I don't know why they don't change it," said the frustrated office worker for one psychiatrist in that situation.

• A physician listed in Bloomfield actually practices in Bayonne. An allergist out on maternity leave is still listed as accepting new patients -- complete with her cellphone number. "I don't know how that happened," she said.

• One company's seemingly robust network of 76 cardiologists in Essex County includes a separate listing for every location a physician uses. For some doctors, that's up to five different offices. So those 76 participating cardiologists boil down to just 30 doctors. Forty-five orthopedists? More like 15.

• Although 13 cardiologists participate in one of the plans in Somerset County, just two of them are accepting new patients.

• And the listing for 11 psychiatrists and four orthopedists in Cedar Grove includes a phone number with the 201 area code -- even though Cedar Grove switched area codes 18 years ago. The number is now assigned to a social services agency in North Bergen. "No wonder we get so many phone calls for doctors!" exclaimed that agency's receptionist.

Doctors and other providers are required to update their contact information with the insurance companies, said Ward Sanders of the New Jersey Association of Health Plans, although "this doesn't always happen or happen as quickly as it should." He spoke on behalf of the five companies that administer NJ FamilyCare through managed care plans.

Errors aside, do the networks offer enough providers to treat their customers?

The insurance companies say yes. The state pays them a fixed monthly fee per patient, and they in turn contract with doctors, clinics and hospitals to treat those customers.

NJ Health and UnitedHealthCare Community Plan are the two largest plans, joined by Amerigroup New Jersey, WellCare Health Plans of New Jersey, and Aetna Better Health of New Jersey.

"All of the health plans are in compliance" with state standards, said Nicole Brossoie, spokeswoman for the state Department of Human Services.

In 2013, the year before Obamacare's Medicaid expansion, 14,718 doctors in New Jersey took Medicaid, she said. The state said it will not have a new tally of doctors until later this month, so there is no way to measure the current level of physician participation.

That number may not be accurate because it includes duplications for doctors who participate in multiple plans, she said. The state doesn't keep a running tally because the number changes, she said.

Doctors, however, say the Medicaid system is swamped.

"We believe there isn't an adequate network to treat the demand -- and we don't believe anyone's checking," said Larry Downs, head of the Medical Society of New Jersey.

The state's figure of 14,718? He suspects the real number is much lower. He recalled a summer intern who checked the insurer rolls for the group a number of years ago found the names of several doctors who were dead. "They're phantom lists," he said.

Sanders, of the insurance company trade association, said he suspects something besides money alone may make some doctors shy away from taking Medicaid patients.

Insurance companies tell him their employees will call a doctor to see if she's interested in joining their plan, yet as soon as they say the word "Medicaid," the conversation is over -- before fees are even mentioned.

"Some providers just are not interested in serving the Medicaid population, regardless of the rates paid," he said.

Acting as referee in this tug of war between doctors and insurers is state government, which is supposed to monitor the networks to make sure they're offering enough doctors, reasonable travel distances and timely appointments.

The plans submit reports every three months, and the Department of Human Services Medicaid unit checks the provider lists every quarter, said Brossoie, the spokeswoman. It even conducts "secret shopper" calls, in which a staffer pretends to be a patient seeking an appointment.

Each state sets its own rules about how many doctors per 1,000 patients an insurance company network must have; how far a patient must travel to get care; as well as how long someone must wait for an appointment.

New Jersey's standards are robust compared to those of other states - yet an audit by the federal Office of Inspector General for the U.S. Department of Health and Human Services showed the state found no violations at all from 2008 through 2013.

And New Jersey has plenty of company in having plans with out-of-date provider lists, the audit showed. Calls to 1,800 random Medicaid providers nationwide -- including in New Jersey -- showed fewer than half could offer an appointment to a new patient.

And the audit was done before the Obamacare flood of millions of new patients into the program.

Nor is the federal government paying much attention to whether care is readily available. The office overseeing Obamacare, the Center for Medicare and Medicaid Services, told auditors that until recently it did not monitor violations or the states' handling of them.

When it comes to disputes in New Jersey, one practice administrator for a Middlesex County specialist said she's come to view the state as a paper tiger in intervening when insurers balk at covering services. (The specialist said he didn't want his practice's name used for fear of antagonizing regulators.)

"A lot of times they're just plain non-responsive to our complaints," she said of the Medicaid Quality Assurance office in Trenton. "They've told me straight up they don't have ammunition. They don't have any clout. Insurers know there's not going to be any follow-up."

One hint about how patients are affected by the difficulty in finding care is an unpublished statewide poll conducted by Monmouth University Polling Institute last fall. It found that respondents with Medicaid were the most likely to say they had to wait to see a doctor.

Of those who had a government health plan like Medicaid (but not Medicare), 31 percent said their health had suffered either a little or a lot because of the wait for care. That's worse than the 20 percent reported by people with no insurance at all.

Some doctors balk at the notion it falls to them to accommodate the 30 percent jump in Medicaid patients under the current pay structure.

"We're not going to pick up that 30 percent," said Hillsborough orthopedic surgeon Harvey Baron, who has been practicing for more than 30 years. "There's no law I have to. I will pick and choose."

While he may sound like he's resistant to caring for low-income people, that's not necessarily the case. He recently did a knee replacement on an uninsured patient for free, he said. In gratitude, she gave him a potted orchid. He accepts Medicaid for longtime patients, and says, "We never let anyone who is sick go away."

What he resents, he said, is the government's assumption the program will stay afloat -- and even expand -- by extracting money from his practice.

"I can't work for free -- and neither can other doctors," he said. "It's reached the point where my staff hasn't had a raise in years."

Allergist James Fox, who is the only specialist in his field in Somerset County for several Medicaid plans, said the Medicaid fee covers only the quickest, most uncomplicated appointments. In cases requiring supplies like insect venom extracts, for example, the payment wouldn't cover the cost of the medicine, he said.

"Some plans will tell you you'll make up the difference in volume -- but not if you're always losing money," he said. In New Jersey, the average Medicaid reimbursement for an office visit to a family physician is $23.50, with specialists receiving more, according to Kaiser.

Frustrated patients have tried to overcome this financial obstacle by offering to pay the doctor the difference between Medicaid and his normal fee, Fox said.

Joanna DeProspero was desperate to find a pain management doctor for her adult daughter, who works part-time at Home Depot despite back pain. When she proposed paying cash, she learned it's illegal for a doctor to accept such a payment. Doctors who participate in Medicaid cannot bill a patient anything extra, said Downs, of the medical society -- even if that payment is freely offered by the patient.

"I've literally cried at the end of the day after six or eight phone calls," said DeProspero , a retired teacher from Cedar Grove. "Everything's now a specialty -- and you can't get a specialist. I've called them all and they no longer accept Medicaid. I said, 'Well, you're on the list.' "

"I understand," said Jess DeProspero, her daughter, who said she never anticipated it being this difficult to get treatment. "But at the same time, I don't think it's right."

Often difficult cases

It's not just money that makes doctors shy away from accepting Medicaid patients. Doctors also say that in general, these patients can present complicated cases.

If they've been uninsured -- or underinsured -- for years, they've put off getting care for any condition that isn't dire. That means their appointments will take longer -- with nothing in the fee structure to reflect that. It's as if someone who hadn't had her car serviced for years showed up at the auto mechanic's expecting to get everything fixed for a flat fee.

And that's the ones who show up. Given their finances, Medicaid patients live close to the edge, vulnerable to last-minute problems with unreliable transportation and child care. A busted fan belt or a sick babysitter can easily upend any plan to visit the doctor.

"They don't show up, and I'm left staring at myself," said Mitch Alpert, a pediatric cardiologist from Brick who takes Medicaid despite his annoyance with the system.

"Why do we take it? Because somebody has to," he said. "It's a serious business, pediatric cardiology. I'm not having someone die because they couldn't get in to see me."

Morristown pediatric neurosurgeon Catherine Mazzola applied to be a Medicaid provider with two of the plans that her longtime patients use. As someone who treats complicated cases involving cerebral palsy and the like, she knows it's crucial to those families that she accept Medicaid.

Yet it took her nine months to go through the hoops to get approved by two plans. And now that she's working with them, she finds her office staff has to battle constantly to get approval for tests.

"When the emergency room has called me, I have never, ever asked what kind of insurance they had. I'll put my hand on a Bible. That's not how I was trained. That's not who I am," she said.

But she's also seen one of her nurses spend hours on the phone trying to overturn the denial of authorization for an MRI for a child after a car accident. And time is money when you're running a small business.

"No offense, but I can't afford to do that," she said.

Sanders, however, defended insurers, saying studies have shown that nearly a third of tests ordered by doctors are unnecessary.

A temporary fix

The Obamacare law anticipated this shortage of doctors by offering states money to bump up Medicaid reimbursement rates for two years. The thinking was the beefed-up payments would increase access to doctors.

It worked -- while it was in effect. The pay raise lapsed, however, as of Jan. 1, with New Jersey -- like most states -- making no move to make up the difference out of their own coffers.

"The doctors weren't stupid. They knew it was temporary, so they didn't join," said Alpert, the pediatric cardiologist.

A study by the Robert Wood Johnson Foundation found it became easier for patients to get appointments during the two years of the pay raise. That was because existing Medicaid doctors accepted more patients, however, not because more doctors joined the program. Whether those doctors continue to see additional patients now that the pay raise has disappeared remains to be seen.

Savvy doctors know insurance companies need them so their provider lists pass state muster -- and that gives them some room to negotiate.

Alpert said he used his clout as the only specialist in a two-county area to get the insurers to ease up on their demands to document the need for every echocardiogram he orders.

James Fox, the Branchburg allergist who has seen Medicaid patients for 30 years, now participates only in plans with which he has negotiated higher reimbursement.

Other doctors will go to bat for a patient to get an insurer to approve a "single case agreement" if they're not in the patient's plan.

The greatest shortages show up in the specialty fields, health providers say: orthopedists, allergists, neurologists, as well as any subspecialties involving pediatric care. There appear to be enough primary care doctors in the program, and hospitals are required to treat people regardless of citizenship or ability to pay.

Whatever the extent of any provider crunch, it is unlikely to be solved by a boost in funding out of Trenton, as neither poor people nor doctors have much political clout, said Patrick Murray, the pollster and political analyst with Monmouth University.

"Medicaid requires the state to kick in some money -- and there isn't any money coming in for anything in New Jersey these days," he said. "The governor has to make sure he doesn't raise taxes so he can run for president. So spending more money on Medicaid is a nonstarter right now."

While voters in general admire and trust doctors, they also see doctors as making more money than them. "They're not unsympathetic to the problems, but they're not going to take to the ramparts in the cause of doctors getting more money," he said.

Sanders, of the insurance plan association, agrees, noting "there does not appear to be an appetite for increased taxes" to give doctors a pay raise.

A pathway through the courts may force a change, however.

The U.S. Supreme Court last month heard arguments about whether doctors in Idaho can sue that state for higher Medicaid payments. In his questions, Chief Justice John Roberts voiced a worry that such lawsuits could be "a prescription for budget-busting."

A decision is expected in June.

Downs, of the New Jersey Medical Society, said his organization hasn't decided how it would respond if the court says doctors can sue, but "we're monitoring the case very closely."

In the meantime, patients like Justin Holstein and Jess DeProspero find care wherever they can get it. Holstein's home video installation business has picked up, meaning he makes enough money to be ineligible for Medicaid. He bought a subsidized policy through the Obamacare federal website instead.

But in his year on Medicaid, he said he often ended up getting care by going to an emergency room and telling doctors there what his old doctor had prescribed.

And DeProspero's mother said that when her daughter couldn't get in to see a pain management doctor, the insurance company suggested she go to an emergency room as well.

That's precisely the kind of expensive care that Medicaid expansion was supposed to reduce, said health advocates.

"If I have insurance and no one takes it, am I insured?" asks Alpert, the pediatric cardiologist. "The answer is no."

Photo Credit: Robert Sciarrino | NJ Advance Media.