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Who: Burke Stansbury, 37; Krista Hanson, 36; and their son, Lucas Hanson, age 4. Burke works full time for a nonprofit organization; Krista is a part-time yoga instructor. They live in the Mount Baker neighborhood.

Circumstance: Lucas was born with a rare neuromuscular disease that severely limits him physically, but not mentally. He needs a ventilator to help him breathe and requires home nursing care.

Challenge: Lucas’ parents have group health insurance from a nonprofit that covers the specialists and equipment Lucas needs. But it doesn’t cover home nursing, necessary to make sure his breathing equipment functions properly.

In the “old” system, Lucas’ pre-existing condition would have prevented him from being able to get a child-only health-insurance policy. Although children in Washington are covered under Medicaid (and other programs), the private-duty nursing agency Burke and Krista found doesn’t take Medicaid.

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Current coverage:
The Affordable Care Act (ACA) requires that insurers must accept all children, even those with pre-existing medical conditions. So Burke and Krista were able to buy an individual child-only policy from Regence BlueShield for Lucas that helps provide the nursing care.

The future: The couple won’t qualify for subsidies under the ACA because their income is too high. But on their own they couldn’t afford the continuous nursing care Lucas needs, so they were grateful to be able to buy coverage.

And the ACA did one other thing that means a lot to them: It removed the lifetime limits on what insurers spend on a person’s care. Lucas’ first three months of life — spent in a neonatal intensive-care unit — already used up a good chunk of what used to be a typical $1 million lifetime limit.

Their view:
“We feel very fortunate that [the Affordable Care Act] went into effect about the time we moved [to Seattle from Washington, D.C.],” Burke says. “Without nursing care, we wouldn’t be able to work.”

— Carol M. Ostrom

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