Special-needs families fretting Medicaid change

Erica and Steven Gendel of Livingston say they have been “blessed with an amazing child.”

But at the age of 12, Joshua has a severe case of cerebral palsy. He requires extensive medical assistance “from at least a dozen providers,” said his mother, who is now struggling to make sure all of that care remains in place.

Under Gov. Chris Christie’s newly passed budget, Joshua Gendel and an estimated 45,000 other New Jerseyans whose families receive such extensive medical services through Medicaid are compelled to enroll in managed care plans by July 18.

It is part of the governor’s plan to cut $540 million in state Medicaid funds.

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Nicole Brossoie, assistant commissioner for public affairs at the state’s Department of Human Services, assured NJ Jewish News that “it is absolutely our position that people with special needs will be getting better care than they are now.”

But Erica Gendel is not convinced.

Switching into an HMO from her family’s current fee-for-service medical insurance could force Joshua to change doctors as well as the suppliers of his wheelchair and breathing equipment.

“I have kept my kid alive by choosing his providers,” she told NJJN in a July 5 phone interview. “There is absolutely no way the state is going to tell me how I am going to care for my kid.”

According to the DHS website, “Your HMO will ensure that your care continues after enrollment without interruption, with the same provider. Once you are enrolled, the HMO will do an assessment of your needs, and any change to your care plan or providers will be discussed with you at that time.”

But Gendel says enrollment in an HMO “might require paying more out of pocket for medications. That would be a huge expense. If we choose to be with our current providers who do not accept Medicaid, we will have to pay more out of pocket. This could make us broke.”

Although 13-year-old Isaac Stein has no specific medical diagnosis, his condition is similar to that associated with cerebral palsy. He is wheelchair-bound and non-verbal.

“He has a lot of different medical issues,” said his mother, Eli, in a July 7 phone interview from her home in Passaic.

She estimates that Isaac sees 20-25 specialists and requires prescriptions filled at two different pharmacies “because one of them cannot get some of his medications.” He also has four different providers for his wheelchair, bath chair, and other special supplies.

The Steins use Medicaid to cover Isaac’s prescriptions and out-of-network copayments for doctors’ visits.

With less than a week to go, his mother is racing the July 18 enrollment deadline to find a single HMO that will cover all her son’s complex needs. If she fails to meet that deadline, the state will place Isaac in one of four approved managed care plans.

“I am hoping this won’t affect his treatment,” she told NJJN. “We use doctors in New York a lot, and they don’t take New Jersey Medicaid. Last year we traveled a lot to Children’s Hospital of Philadelphia, and they don’t take Medicaid. Our primary care physician doesn’t take Medicaid. I’m not really sure whether we will have to change a lot of our providers.”

Under the new plan, special needs patients will not be reimbursed for being treated out of state.

But Brossoie insisted that many families might benefit from in-state care managed by their new HMO, even if they must change doctors.

“The HMO says, ‘Maybe you were going to New York for this specific service, but we have this in our network in your local network.’ A lot of time that is the case. Now you have a care manager you may never have had before, so if you have to coordinate 20 doctors, Mom, who has been doing it on her own, now has someone doing it for her,” she said.

Christie explained the need for the changes in his budget address in February. “Medicaid’s growth is out of control,” he said. “We must do these things, not only to fill the hole created by the loss of over a billion dollars of federal stimulus money since 2010, but because it is the right thing to do.”

Critics of the cuts in Medicaid eligibility include State Sen. Loretta Weinberg (D-Dist. 37), chair of the Senate Health, Human Services, and Senior Citizens Committee.

“There are people who need to be exceptions to what the rules are,” she said in a phone interview. “We are dealing with real lives here.”

On Monday, Weinberg led Senate Democrats in a losing battle to override the governor’s veto of a bill that would have reversed the managed care proposal.

“We will try to address some of these things as we move along, but we couldn’t get enough votes,” she told NJJN. “Republicans are in lockstep. It is very disconcerting,”

“A basic thing we learn in our religion — whether Reform, Conservative, or Orthodox — is to take care of the widow and the orphan,” added Weinberg. “You take care of families and children. That is a basic tenet of Judaism. People are not supposed to go hungry or without medical care.”

Jewish organizations are monitoring the situation but have taken no specific actions.

“In a sense it affects the Jewish community disproportionately because Medicaid funding is our number one reimbursement source,” said Jacob Toporek, executive director of the New Jersey State Association of Jewish Federations. “Any reduction in that will make it more difficult for us to provide services.”

The State Association is “very much concerned with protecting the most vulnerable,” Toporek told NJJN.

‘A big injustice’

Yeshi Ghoori of Lakewood calls the governor’s plan “tremendously negligent.”

Ghoori is the father of nine-year-old Yisroel Meir Ghoori, who contracted meningitis when he was a year old.

“It wiped out his brain,” said his father. “My kid gets therapy numerous times a week, and that is covered by Medicaid. The second he is in an HMO, it only provides 20 sessions a year. I will have to pay $20,000 out of pocket to cover therapy for my kid. We are trying to get some clarification as to what we are up against.”

Brossoie insisted that HMOs are much improved from a decade ago, when consumers complained about coverage restrictions and the quality of care.

“There are a lot of great things going on with the HMOs,” she said. “There has been a lot of growth. There has been a lot of adding to the networks. There have been a lot of specialty physicians who had not previously been involved.

“There is an unnecessary fear of change,” said Brossoie, adding that the affected families will find “an easier process for them. There are both adults and children who have some really involved medical needs, and the HMOs are more than prepared to handle them within their networks.”

But, Weinberg told NJJN, “I am hoping we can turn this around. I hope the Medicaid managed care for this population is slowed down considerably. People have to understand there is a big price to pay for the kind of philosophy being exhibited in Trenton.”

Eli Stein worries about the future of her seriously ill son, Isaac.

The changes are “doing people with disabilities a big injustice,” she said. “They are making our lives more difficult when they are already difficult.”