Care Facilities for the Mentally Disabled

“U.S. May Pull Funding of Homes for the Disabled” (Dec. 5) really missed the mark in its reference to nursing homes. Nursing homes and other licensed long-term care facilities serving the developmentally disabled, known as intermediate care facilities for the mentally retarded (ICF/MRs), are not covered under the waiver described in your story.

ICF/MRs undergo rigorous licensing and certification requirements by the state Department of Health Services. ICF/MRs in the community are subject to stringent state and federal requirements, and are regularly reviewed by state inspectors. Regulations include mandated staffing levels and training requirements; fingerprint checks; physician oversight of all medical care, along with a registered nurse and pharmacy; and a qualified mental retardation professional on staff.

GARY D. MACOMBER

Exec. Vice President

California Assn. of Health

Facilities, Sacramento

* Your article characterizes me as “among the sharpest critics of the state’s policy.” This is not so. As scientists, our interest is in improving the quality of medical care for persons with developmental disability. We are more than willing to work with state officials.

The article correctly reports deaths from bowel constriction, choking on food and pneumonia after aspirating food. It then quotes me as saying that “they were all treatable if you’ve got good medical supervision.” However, I made it clear that death from aspiration pneumonia will sometimes occur regardless of the level of care. The article concludes, “[Strauss] believes most of the 45 deaths were preventable.” I stated that some of the deaths were preventable but would not characterize the majority of the 45 in this way.

PROF. DAVID STRAUSS

Director, UC Riverside

Life Expectancy Project

* As a former board member of one of the 21 regional centers in California, I was one of those who advocated early on to close the state hospitals, like Camarillo, in order to move patients into the community. In 1990 I was led to believe that the major funding that the state hospitals received would follow the patients as they were relocated into community group homes.

Eight years ago alarm bells were already ringing when I and other parents and community members were being asked to “volunteer” as advocates for some of these people who were being moved into group homes. Volunteers cannot be depended on to monitor the support that people with severe disabilities need to survive, much less thrive.

As a parent of a young adult with significant challenges, who lives semi-independently in the community, I know how much time and effort are involved in making sure the required supports are in place on a daily basis. Many people with severe disabilities do not have parental oversight. Thank you for giving this issue such urgency in your Dec. 7 editorial. It is a matter of life and death.

ELENA SIFF ERENBERG

Santa Monica