Wendt is among the 365 patients diagnosed with mental retardation and mental illness being treated at an outpatient clinic devoted to serving this population.
The specialized clinic directed by Cain at the University of Rochester also trains psychiatry residents and provides consultations to attending physicians and mobile outreach services, said Cain. She is a member of APA’s Caucus of Psychiatrists Treating Mental Retardation/Developmental Disabilities.
Researchers estimate that about 40 percent to 70 percent of people with mental retardation have a psychiatric disorder. Some studies have shown that mood disorders, specifically schizophrenia and rapid-cycling bipolar disorder, are more common in people with mental retardation than in the general population. However, people with mental retardation experience the full range of psychiatric disorders.
People with mental retardation living in the community in supervised or independent housing require an array of clinical and practical services, and an interdisciplinary team approach is essential, said Cain. On her staff are a psychologist, two psychiatric nurses, and a psychiatric social worker. They provide individual and group psychotherapy, family therapy, caregiver education, and medication management.
The staff collaborates with the university’s Strong Center for Developmental Disabilities, directed by clinic psychologist Philip Davidson, Ph.D. Cain and Davidson also collaborate on research projects involving patients seen in the clinic.
Patient care is also coordinated with primary care physicians, residential nurses, managers, case managers, day program staff, and physical, occupational, and speech therapists.
Cain diagnosed Wendt with psychosis "not otherwise specified." "However, this diagnosis could change given the complexity and uncertainty involved in treating psychiatric disorders in people with mental retardation," said Cain.
She prescribes low doses of risperidone and quetiapine for Wendt. After hearing his father complain that he hasn’t improved on risperidone and has side effects such as drooling, however, Cain tapered him off the medication.
Cain also ruled out underlying medical conditions, which tend to be more prevalent in people with mental retardation than in the general population.
In Wendt’s case, laboratory tests revealed hypothyroidism, which can cause slow speech, lack of energy, weight gain, and, if severe, psychotic symptoms, said Cain. She prescribes Cytomel to treat the thyroid condition.
Wendt has autism, another developmental disability. About 70 percent of people with autism also have mental retardation.
Some autistic behaviors appear to be similar to psychotic symptoms in people with mental retardation including aggression, bizarre behaviors, and giggling for no apparent reason, according to DSM-IV-TR.
Cain mentioned that mood disorders with psychosis can be characterized by several other features including irritability, inappropriate giggling and laughing, hearing voices manifested by gazing at a corner of the ceiling or wall, talking to oneself, hallucinations, and delusions.
Cain realized that the mental health system was generally uninformed about treating this population in the 1970s and early 1980s. This became apparent when she was a consultant to the Association of Retarded Citizens (ARC) in the Rochester area and medical director of an ARC day treatment program.
A common misconception among many psychiatrists and mental health professionals was that mental illnesses did not exist in people with mental retardation. This led to refusals to treat this population.
Psychiatrist and pioneer Frank Menolascino, M.D., author of the 1970 book Psychiatric Approaches to Mental Retardation, helped change that misperception.
Another common misconception was that people with mental retardation could not benefit from psychotherapy, said Cain. So that service was not provided by the community mental health system.
Frustrated with the barriers she encountered, Cain agreed to direct a new outpatient clinic in 1986 to serve adolescents aged 15 and above and adults with mental retardation and mental illnesses. The clinic was also to be a training ground for psychiatry fellows and residents. Cain insisted that the clinic be located in the department of psychiatry so she could serve as a role model to psychiatry residents and colleagues.
About 50 third-year psychiatry residents have rotated through the outpatient clinic since 1986, said Cain. Michael Scharf, M.D., a PGY-4 resident, said in an interview that he enjoys doing psychiatric assessments of people with mental retardation because "it is not cookbook psychiatry. Their symptoms don’t fit neatly into DSM categories. Working with these patients and their caregivers from different agencies is challenging and rewarding."
Cain also is a consultant to the Crisis Intervention Team led by Virginia Giesow, M.A., of the Strong Center for Developmental Disabilities. The mobile interdisciplinary team provides crisis assessments and referrals for children and adults diagnosed with developmental disabilities living in the community, said Giesow in an interview. The team is available 24 hours a day, seven days a week.
As the team’s psychiatric consultant, Cain looks for signs that people with mental retardation may be having a psychiatric crisis. "If present, I refer the individual to Strong Memorial Hospital for a psychiatric evaluation by Eric Brewer, M.D., director of the inpatient psychiatric unit," said Cain.
Brewer said in an interview, "Many of these patients display aggressive and self-destructive behaviors that can’t be managed in their group homes or by their parents." About three-quarters of the patients discharged from the inpatient unit receive ongoing treatment in Cain’s outpatient clinic, said Brewer.
The vast majority of the clinic’s patients receive Medicare or Medicaid benefits with about one quarter receiving both. Cain complained that the fee-for-service reimbursement rate doesn’t adequately compensate the multiple assessments that are often required to diagnose people with mental retardation accurately.
Medicare paperwork hassles are also forcing physicians trained in developmental disabilities out of business. "A university internist I referred my patients to can’t afford to maintain his practice because the Medicare paperwork became so great," said Cain.
More information on mental retardation and psychiatry can be found on the Web at www.psychiatry.com/mr and www.psych.org/pract_of_psych/disability.cfm. The latter site provides an overview of the field by Ronald Kessler, D.O., chair of the APA Caucus of Psychiatrists Treating Mental Retardation/Developmental Disabilities. ▪