Family Matters
by Laurel Felsenfeld, BSN, RN, CRRN, CCM

My company provides case management to the insurance industry, as well as private-sector case management services focused on geriatrics, behavioral health and developmental disabilities. Several years ago we received a crisis referral from a court-appointed attorney for a 45-year-old, developmentally disabled man, Paul Johnson. Paul was removed from his home by adult protective services and was at a local hospital, as were his parents. Paul, the late-in-life-child of Edna and Bob, has Down’s syndrome. He is 15 years younger than his only sibling Doug, who is retired and lives out of state.

As was common in the days when Paul was born, the Johnsons were encouraged to “give him up” to a state-run institution, but Edna refused and cared for him at home. As we often find in clients of Paul’s age, he never attended school and never received any community services. Instead, Paul helped with household tasks and did some simple assembly work in his father’s tool and dye shop.

Years later, Bob developed Alzheimer’s disease, and Paul also exhibited symptoms of early onset Alzheimer’s (often associated with Down’s syndrome), including violent outbursts and refusal of hygiene. The stress of caring for them became too much for Edna, and she suffered a massive stroke while out shopping one day. The neighbors called the police when they found Paul pacing and sobbing in the driveway. The police called the local hospitals and located Edna, and dropped Bob and Paul there. Suddenly, we found ourselves with three clients who required medical care, appropriate placements and financial assistance/entitlements evaluations. Compounding matters, we had to deal with one overwhelmed son/brother who refused to accept guardianship and decision-making authority.

This is where our nursing triage skills came in handy. We found placement for Edna in a skilled-care facility that accepts Medicaid for long-term custodial care. Then we located a dementia-specific assisted-living facility down the street from the nursing home and an estate-planning attorney to manage the family’s assets and income to support Bob. Finally, we had Paul’s undiagnosed and untreated cardiac conditions addressed; had him evaluated by a behavioral medicine specialist for symptom management; enrolled him in community mental health (CMH) services to find him an appropriate state-subsidized adult foster care home; and asked the estate attorney to enroll Paul in a non-profit organization that was sponsored pooled trust so that when his parents pass on, his inheritance won’t disqualify him from the housing and services that we arranged. After hours of having the telephone glued to one ear, we managed to accomplish all of this within four days of referral.

Today, Paul is thriving in the group home and attends a weekday workshop program. He beams when he shows us what he has purchased with his paycheck. The group home takes Paul every other Sunday to visit his parents. With our continued support, Doug agreed to accept guardianship of his parents, and we monitor Paul for the court-appointed guardian.