Glick P S, Guyer B, Burr B H, Gorbach I E
N Engl J Med. 1983 Sep 15;309(11):640-6. doi: 10.1056/NEJM198309153091105.
Pediatric nursing homes were established in Massachusetts in 1971, in response to the crisis created by the deinstitutionalization of children with multiple severe handicaps for whom care in the community was unrealistic. Although these residential beds provided short-term relief for the system, failure both to plan for the improved long-term survival of the children and to develop alternative community services for those whose functional and medical status changed has left fundamental problems unresolved. A review of the 421 residents of pediatric nursing homes since 1972 shows that most have been bedridden and nonverbal, requiring provision of basic care: feeding, dressing, maintaining hygiene, and sensory and motor stimulation. Three quarters of the residents were severely or profoundly retarded and had seizures. About 4 per cent died each year, and another 5 per cent were discharged; few beds were available for new admissions. Low standards of care and financial disincentives have resulted in less than optimal educational and rehabilitative services. Other states are facing similar problems, which can be resolved only through better funding and coordination of the relevant state agencies.
1971年，马萨诸塞州设立了儿科疗养院，以应对多重严重残疾儿童去机构化所引发的危机，因为让这些儿童在社区接受照料并不现实。尽管这些住院床位为该系统提供了短期缓解，但既未对改善儿童的长期生存进行规划，也未为功能和医疗状况发生变化的儿童开发替代性社区服务，这使得一些基本问题仍未得到解决。对自1972年以来儿科疗养院421名住院患者的审查显示，大多数患者卧床不起且无法言语，需要提供基本护理：喂食、穿衣、保持卫生以及感官和运动刺激。四分之三的住院患者严重或极重度智力发育迟缓且患有癫痫。每年约有4%的患者死亡，另有5%的患者出院；几乎没有床位可供新患者入住。护理标准低下和经济激励不足导致教育和康复服务未达最佳水平。其他州也面临类似问题，只有通过更好地资助和协调相关州机构才能解决这些问题。
