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Financial columnist Sandra Block has noted, “Most parents of special needs children realize their children probably will outlive them.”

“While 60 percent of parents said their special needs child will require lifetime care, the majority hadn't even prepared a will,” says Nadine Vogel, who founded MetLife's special needs division.

Also, there are guardianship, decision-making, and end-of-life decisions, states Jack Rule, a partner in Miller, Turetsky, Rule & McLennan, a Collegeville, Penn., law firm.

‘Law evolving’
Rule explains, “The law here is evolving. It isn’t possible to give definitive conclusions backed by substantial, long-standing precedent.” He says a letter of intent has guidelines for a child's caregivers and guardians. “It should include the child's medical history, daily care requirements, and likes and dislikes.”

“With formal estate planning, assets are willed legally to the disabled child; assets exceeding $2,000 would disqualify that child from eligibility for needs-based, government-funded support, such as Social Security Disability Income or Medical Assistance. A Special Needs Trust gives total discretion to the trustee to spend or not spend income or principal, but allow spending for needs not covered by government programs.”

Mom had answer
As for financing technological needs, Lyla Crawford, of the DO-IT (Disabilities, Opportunities, Internetworking, and Technology) program at the University of Washington, says a financial aid office makes services accessible to a student with a disability. Deborah Erie, director of student/enrollment services for Pennsylvania State University’s Brandywine campus, adds, “We’ve had families work with the Office of Vocational Rehabilitation (OVR) for help in tuition, and if they needed extraordinary accommodations.”