February 27, 2018


DisabilityScoop.org reports on a University of Illinois study that finds few parents planning sufficiently for their disabled children.

A survey of nearly 400 parents of children ages 3 to 68 revealed only 3.6 percent of parents had fully planned, 32 percent had done a moderate amount of preparation, and 12 percent had taken no action.

The biggest reason cited for incomplete planning was a lack of residential, employment, and recreational services. Other major factors included the hectic day-to-day life as a parent of a special needs child, lack of information, and the daunting task of figuring out where and under what circumstances a grown child will live without the parents.

The most commonly taken step according to the survey was locating a knowledgeable special needs attorney. Other important steps parents should take or consider, depending upon the child, are writing a letter of intent describing protocols and routines for care, establishing a special-needs trust, establishing legal guardianship, creating powers of attorney for the parents, and securing a residential placement.

The study will be published in the April edition of the journal Intellectual and Developmental Disabilities.