The term family-centered early intervention refers to both a philosophy of care and a set of practices. Both have been used to guide research, training, and service delivery for well over a decade. Unfortunately, though, the universal adoption of family-centered values and practice in early intervention is problematic for a number of reasons. This article will discuss these reasons in the context of the current state of early intervention and provide recommendations for the new millennium.Family-centered early intervention remains an elusive goal for our field. The following stories illustrate some of the challenges associated with this goal.
MICHAELOn April 29, 1999, my son Michael was born. He was unresponsive and very floppy. It was a horrible time because unlike when my daughter was born, all the nurses left us alone most of the time and kept shutting the door to my room. Because we insisted, a geneticist came to see him the next day. He ordered an MRI, ultrasound, and bloodwork and said he would get back to us the next week. Michael's pediatrician told my sister that she (the pediatrician) used to work with multihandicapped children, but hopefully Michael wouldn't turn out that way.We learned the next week that Michael had Prader-Willi syndrome.Michael's first problem was with eating. As with most children with this syndrome, Michael's low tone interfered with his sucking and swallowing. My pediatrician told me it was okay because these children have a problem with eating too much. She also said we did not need early intervention until he was older.We changed pediatricians (to one who was a father of a child with a disability) and started early intervention. After a brief phone conversation with someone from the county program, a packet of materials was sent to us (about an inch thick). My husband and I could not make sense of them, so we waited until a service coordinator came to see us. I then signed about ten forms including insurance forms, and she scheduled assessments for Michael to see if he could get early intervention.The early intervention evaluation was done by a feeding specialist and physical therapist because these were his primary needs. The two professionals came separately because they worked for separate agencies. They both expressed concern about Michael's lack of responsiveness and both told me that there was a Prader-Willi group home in the next town for when Michael was older.The reports they did on Michael were mailed to us about a week later. They were very detailed and very negative. While reading them, both my husband and I cried.Next came our IFSP meeting. My mother, sister, and another parent were there with the service coordinator and another early interventionist. The evaluations were read, and when the service coordinator asked me if I had any questions, I asked, &dquo;How come the reports were so negative, and they didn't say anything positive or hopeful about Michael?&dquo; She told me that the therapists were doing their job, documenting Michael's needs. The service coordina...