Considering quality of life
That's the case for his family, Nurse says. It's how he and his wife plan to provide for their daughter Shelby, who has cerebral palsy.
While Social Security and Medicaid may pay for basic needs, "There are no public funds for quality of life," he says. "That's one of the goals for families -- that their child can actually go out to dinner, get their hair cut, have a cellphone."
But those expectations can be expensive. By thinking about Shelby's future needs now, Nurse and his wife can account for some of the hopes they have for her life.
"One of ours is, we don't want our daughter to live with people she doesn't care to live with ... no group home," he says. He and his wife also want her to have access to the latest technology and the Internet, and to have money to pay for visiting her brother at least once a year.
Still, money from the trust can't be used to pay for services that a government program normally covers. For example, if Medicaid pays for 10 hours per day of care but the person needs 20 hours, the trust can pick up what federal assistance doesn't.
All of this planning doesn't mean a special-needs child won't grow up to become an adult with a job.
"We're not lowering expectations or diminishing expectations," Nurse says. For example, Shelby attends college and represents companies that make computer hardware and software to help students with physical disabilities to access school curriculums.
One day, her income may have to be routed to the trust or monitored to prevent her income from interfering with public benefits if she needs them, because many of these programs have income limits, he says. Laws on routing income into a special-needs trust vary by state.
"Our goal for Shelby is not so she can grow up and collect a poverty subsidy," he says. "If she doesn't need it, she doesn't need it."
But the future is uncertain, and families with children who have disabilities must plan for it. "I use the metaphor that this is like a lifeboat. ... Special-needs planning is (like) building the lifeboat," Nurse says.