Cancellation of health insurance leaves local family with special-needs child ‘in the lurch’

//Cancellation of health insurance leaves local family with special-needs child ‘in the lurch’

The troubled implementation of the Affordable Care Act is threatening one local family with the loss of coverage they’ve relied upon for years.

Eileen Benthal, of Jamesport, will speak about her predicament to Sean Hannity for a segment to air this afternoon on his radio talk show. [The segment will air at 4 p.m. on his WABC radio, 770 AM.] Her daughter, Johanna, 17, has undergone 86 surgeries since she was diagnosed at three months old with a rare genetic neurological disease that causes tumors to grow in her brain. Her parents’ insurance plan has always covered her care, soaring to at least $100,000 per year in medical expenses.

With the new rules and surrounding confusion, that coverage hangs in the balance.

“I was in my daughter’s hospital room when I was on the phone with the insurance company and they told me our plan would be terminated,” Benthal said. Johanna was recovering from her latest brain surgery, a stay Benthal expects to cost around $30,000. Benthal started crying.

She and her husband have had a plan they purchase as a sole proprietorship, she being a freelance writer and he a marketer. Under one of the act’s provisions, according to their provider, Oxford, they are no longer eligible for the plan.

Their only feasible option appears to be entry into the New York State Health Exchange, which Benthal’s insurance agent said would cut Johanna’s access to her current hospital in NYC and the other premium hospitals in the region, most of which do not participate in the plans available on the exchange. If they were to purchase another plan from Oxford for Johanna, it would be as an individual and would include a $6,000 deductible with copays. Their current plan has a $4,000 deductible without copays.

The shift also leaves the family’s Medicaid assistance in the lurch, Benthal said. They had received reimbursements for their premiums, but the future of that arrangement is uncertain.

“All these offices are in chaos and no one knows anything,” she said of Medicaid and other agencies she’s dealt with. “We had a relationship with New York State that worked. With our medically fragile child we can’t afford to be without health insurance for a single day.”

Benthal said she is confident she will “figure something out,” but says she fears the federal government will be less efficient at delivering the level of care she was used to receiving for her daughter. She feels the act lacks in practicability, having more to do with control of healthcare than its improvement.

Another concern is the potential loss of Johanna’s doctor, Mt. Sinai pediatrician Roberta Nataloni, who has been her primary care physician since she was born.

“It’s breaking my heart that I don’t know if I’ll be able to care for Johanna next year,” Nataloni said in an interview today.

She said she fears for all her special-needs patients, as she is seeing more and more plan cancellations leave the most vulnerable with limited and expensive options.

“The most needy of our patients shouldn’t have this happening to them,” the doctor said.

“I wish I could help Johanna but I can’t do anything. That’s the other thing. With Medicaid or other insurance you can fight back, talk to the insurance company’s medical director to advocate for your patient” Nataloni said, adding there is no similar recourse within the new system.

She said she fears her patient population will decrease significantly next year if patients aren’t able to continue the coverage they’ve been using, possibly threatening her office’s viability.

Benthal said she reached out to the conservative talk show host’s producers and they were interested in her story. Both she and Nataloni will be interviewed by Hannity.

Benthal said she isn’t interested in slamming the Obama administration, but wants to bring attention to the crack that Johanna might fall through due to the legislation.

“They could at least have things more together,” she said.


Editor’s note: Eileen Benthal writes a column for RiverheadLOCAL, “Life on Purpose,” which is published every Sunday.

2014-09-07T20:39:14-04:00 November 15th, 2013|Categories: In The Media|0 Comments

About the Author:

Eileen Benthal is a writer, speaker and wellness coach with a B.A. in Theology from Franciscan University. She and her husband Steve live in Jamesport and have four young adult children. Their youngest, Johanna, is a teenager with special needs. Eileen can be reached at

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