On appeal from New Jersey Division of Developmental Disabilities.
Antell,*fn1 Baime and Thomas. The opinion of the court was delivered by Baime, J.A.D.
This appeal involves the efforts of David and Barbara Rosen to secure appropriate residential services for their daughter Stephanie. Stephanie is 35 years old, profoundly retarded and quadriplegic, having the living skills of a totally dependent infant. She is unable to feed herself or care for her own hygiene, dressing or toileting, and cannot grasp objects, move or communicate intelligibly. The Rosens cared for Stephanie at their home until 1985 when she was 28 years old. Because of the parents' physical ailments and age, Stephanie was then placed in a private facility for mentally retarded persons.
In 1989, the Rosens sought the assistance of the Division of Developmental Disabilities (DDD). Under the Developmentally Disabled Rights Act (N.J.S.A. 30:6D-1 through -12) and other statutes, see N.J.S.A. 30:4-25.4, that agency is charged with the responsibility of providing services to persons with developmental disabilities including placement in an appropriate facility. N.J.S.A. 30:6D-9. Instead of pursuing this mission in a meaningful way, the DDD sent the Rosens on a Kafkaesque journey
through an endless bureaucratic labyrinth. While we are sensitive to the difficulty of the DDD's task, we find that the administrative agency utterly failed to perform its statutory obligation and that the Rosens should be reimbursed for the financial burden they were required to shoulder.
The facts are not in dispute. Stephanie is severely mentally retarded. She also suffers from spastic quadriplegia, cerebral palsy, chronic inflammation of the kidney and seizures. To alleviate some of these conditions, she is given large quantities of medication on a daily basis. Because she exhibits unexpected reactions to these drugs, her condition must be constantly monitored.
Stephanie is able to move herself only minimally and is thus confined to a specially designed wheelchair. She is prone to various skin illnesses and injuries, including infections, bruises, rashes and pressure sores. Because of a severe scoliosis condition, surgery was performed some time ago, in which her spine was fused. The spinal fusion has made her particularly vulnerable to injury if her body is twisted when moved. Stephanie's orthopedic problems give rise to an extraordinary array of medical difficulties which must be monitored throughout the day. In addition, she has severe, chronic constipation which requires medication and the daily examination of her stools. She is prone to urinary tract and kidney infections, and the amount of fluid intake must be controlled.
As we noted previously, Stephanie's daily living skills are extremely limited. She was unable to perform a single "task" described on the clinical adaptive behaviors inventory, a standardized test developed and used by the DDD to evaluate a client's ability to function. Suffice it to say, she exists at the level of an infant and is totally dependent on others for her care.
Stephanie resided with her parents until they could no longer attend to her needs. The daily regimen of lifting, bathing, feeding, dressing, and moving her through the night totally overwhelmed the family. As described by Mrs. Rosen, Stephanie ultimately became "116 pounds of dead weight."
At age 28, Stephanie was placed at the Melmark School in Berwyn, Pennsylvania, a private facility for mentally retarded persons. The Rosens selected Melmark after visiting many institutions, group and private homes. Recognizing that openings in programs suitable to Stephanie's enormous needs occurred rarely, the Rosens placed her at Melmark as soon as they learned that there was a vacancy. The cost of Stephanie's care, which is presently borne by her parents, is $41,000 per year.
Initially, the Rosens were unaware of the statutorily mandated services provided by the DDD to eligible developmentally disabled persons. After Stephanie's placement, however, the Rosens were informed that several DDD clients had been placed at Melmark and were being cared for at state expense. On January 20, 1989, they applied to that agency for services. Several months later, on April 23, 1989, the DDD intake team found Stephanie eligible, but determined that she was a low priority for residential placement because she was being well cared for at Melmark. The DDD made an initial determination that Stephanie should be placed in a group home, which by regulation is defined as a facility housing four to six clients with "live-in" staff usually located in the community at large. N.J.A.C. 10:44A-1.3.
On May 18, 1989, the Rosens sought review of this determination by the DDD regional office, questioning Stephanie's priority for placement and the appropriateness of a group home. They additionally requested that Stephanie be temporarily maintained at Melmark, the expense to be borne by the state. The regional office rejected the Rosens' objections and agreed with the recommendation of the intake team. Recognizing
that it could not foresee a community placement becoming available in the immediate future, the regional office noted that "alternative services have been offered." Despite this cryptic and enigmatic representation, it is undisputed that no services were in fact suggested or provided.
The Rosens sought further review. While their application was pending, the Director of the DDD issued an interoffice communication, stating that for fiscal reasons, no new placements were to be made into the Bureau of Special Residential Services (BSRS), unless (1) the Director had committed to such placement prior to the effective date of the directive, (2) the client can no longer be maintained in his or her current DDD placement and the only alternative is a private institutional placement, or (3) the client's life or safety would be at risk absent placement in a private institution. At approximately the same time, Stephanie's priority level was raised. Under her new priority level, the DDD acknowledged that "extended waiting [would] be detrimental."
John Alan Howard, a DDD administrative review officer, conducted two days of hearings. We briefly describe the evidence presented. Much of the testimony pertained to whether a group home would be adequate in light of Stephanie's condition. The Rosens were skeptical that Stephanie's needs could be met in a group home. They had visited a number of these facilities, and knew of none that were equipped to serve patients as low functioning and medically involved as Stephanie. Further, they thought that the notion of living in a normal community was meaningless in Stephanie's case because she cannot interact or communicate with others. Although the Rosens did not completely rule out group home placement they questioned whether such a course was feasible in the context of Stephanie's needs.
The remainder of the evidence presented at the hearing concerned the actions taken by the intake team. The intake process was described by Dr. Max Mastellone, a DDD staff
psychologist who had participated in the review of Stephanie's case. According to Mastellone, an intake worker is assigned to do the field work necessary to determine eligibility and placement. Once the data is collected, a team composed of the intake worker, a psychologist, a nurse and a social worker determines the appropriate level of treatment and services. In this case, Clifford Anderson was the only member of the team to have seen Stephanie. The team members have the discretion to meet the client themselves, but in this case the team chose to rely upon Anderson's observations and the records he collected.
Mastellone testified that the team viewed Stephanie as a low priority for residential placement since she was "well taken care of" at Melmark. Therefore, the team recommended placement on a waiting list for group home placement. Mastellone admitted that very few group homes accept people in wheel-chairs and he did not know if any of these homes served profoundly retarded people. Nevertheless, group home placement was selected for Stephanie because the team viewed this as the "least restrictive alternative." When asked to name ...