Skip to content Skip to navigation

Bridging the life-expectancy gap through consumer self-advocacy programs

December 8, 2010
by Dennis Grantham, Senior Editor
| Reprints
When Jack Carney and his colleagues saw a spike in heart disease, diabetes, and mortality, they taught consumers how to do something about it.

Though he retired in July after some 35 years as a community mental health professional, Jack Carney, DSW, the former senior director of the FEGS (New York, NY) case management program, remains active as a voice for consumers, warning of the need to monitor and maintain physical health and wellness. In fact, this story began when I saw a brief video of a recent talk he gave to CIAD, the New York City-based Coalition for Institutionalized, Aged and Disabled, a group that focuses on pride, purpose, and self-determination for residents of the city’s adult and nursing homes. (A link to the presentation is below.)

Like many in the field, Carney realized only in recent years that, “when you run behavioral health programs, you don’t often spend much time with the physical health issues of consumers.” That all changed about several years ago, he recalls, when two young male consumers at FEGS, both crack users, died suddenly. “At that point, we made [consumer physical health issues] an annual planning priority. The case managers really got diligent on it.”

As the case managers observed the physical health status of their consumers, Carney says that they found troubling data: The incidence of cardiovascular disease among consumers was three times the national average, while diabetes occurred at nearly double the national average. For the 18 consumers on their caseload who died of natural causes between 2007 and 2010, the mean age of death was just 55 years.

“We knew that part of [the increased incidence of disease] was due to the fact that our consumers were aging,” he recalls. But age alone couldn’t explain the increased rates of heart disease and diabetes. The other part, he and his colleagues discovered, “was due to the fact that these consumers had been taking neuroleptic [antipsychotic] meds for the past 10 to 12 years.”

Their discovery led Carney and his colleagues to develop the Integrated Collaborative Care Management Protocol,” a program of training and action that made the pursuit of good primary health care and good physical health a primary service plan goal. The ICCM program exposed a test group of FEGS consumers and case managers to eight, two-hour sessions of training that taught them how to understand factors essential to physical health and work with medical professionals to monitor and maintain them. Sessions, conducted by a variety of volunteer experts—nurses, physicians, psychiatrists, and more—covered everything from exercise and diet to medical issues to self-advocacy training.

A critical segment of the training taught case managers and consumers how to advocate with their treating psychiatrists and primary care physicians for use of the Metabolic Syndrome Monitoring Protocol, a protocol that tracks five key health factors that can be affected by use of antipsychotic medications:

  • Obesity
  • Weight Gain
  • Insulin resistance
  • Dyslipidemia (high cholesterol)
  • Hypertension

These monitors, as well as methods for tracking them, are outlined in his discussion to CIAD members, found at CIAD’s media channel on YouTube.com: http://www.youtube.com/user/CIADNY#p/u/0/W6FkqGE9Jncwww.

Subsequent research showed that consumers in the “trained” group were much better at managing the risk factors for chronic disease than their untrained counterparts and that the training led to better long-term outcomes.

The self-advocacy training was—and remains—especially important for consumers, says Carney, since it is easy for medical and behavioral health providers to overlook the views of the consumer in their zeal to deliver “expert” treatment. Getting any anxious or uncertain patient, or mental health consumer, to talk to their doctor or psychiatrist “is a universal problem,” he says. So, the training program developed several strategies, including practice discussions, role-playing with a friend, and bringing a friend to appointments, to ensure that consumers were better able to calmly and thoroughly explain their needs and expectations for treatment.

“What the training and research showed is that consumers and case managers can be great advocates for primary health care,” says Carney, who considers the training program and its outcomes, “the culmination of my career.”
For more information about the ICCMP and MSMP training programs, feel free to contact Dr. Carney at jacarneysr@aol.com. For further information about CIAD (The Coalition of Institutionalized and Disabled Adults) and its growing list of video programs, log onto its website at www.ciadny.org.

Topics