Karen
In Summer, 2001 Karen moved to her new CSI-supported home. She had lived lifelong with her parents, now in their senior years. Her parents were concerned about Karen's transition to her own home while they were still able to participate in decision-making, supervise her new caregivers throughout the transition, and closely monitor her healthcare.
Karen’s parents are long-time advocates for persons with disabilities, and they had articulated to state legislators and state administrators the need for a new type of community living home – one with intensive nursing supports, environmental adaptations, and assistive technology. In Karen’s home state, there was no precedent for such a small home for people with developmental and intellectual disabilities. Rather, persons with multiple and intensive needs then lived at the state institution, or in a nursing home. Karen’s family home stay was exceptional, especially given the intensity of her care needs, and required extraordinary daily efforts from her parents.
To open the CSI-supported home required negotiation with the State Board of Nursing over the delegation of certain tasks and the home’s overall nursing supervision.
Karen has very special needs, including tube feedings, suctioning, and tube-administered medications. Given the length of her feeding and medication cycles, she requires nursing support 16 hours a day. To assist in the provision of nursing supports, especially daily assessments of persons’ health status, the Program Manager of Karen’s home is a nurse. Since 2004, Karen has been hospitalized only four times for upper respiratory conditions, seizure disorder, and/or a fracture resulting from severe osteoporosis. (Hospitalizations in the first two years of her residency were more frequent.)
Karen’s home is spacious, with an open floor plan, and well equipped. She has a specially fitted wheelchair, mobile recliner, fully accessible bathroom, and overhead lift system. The latter eliminates the need for cumbersome, mechanical lifts for Karen and her three housemates, others of whom also have intensive needs.
Achieving community inclusion, an important CSI objective, has been a challenge. The Assistant Program Manager is creative at seeking opportunities, and
activities have included out-of-town trips to the beach and an aquarium. A local singer is invited frequently to Karen’s home, and her home has hosted neighborhood BBQs. Reaching out, Karen and housemates have delivered baked goods to the nearby fire station and turkeys to the Sunday Mission during holiday seasons.