Member Since

1996

Introduction

For Mary Jo Santo Pietro, PhD, CCC-SLP, a recently-retired professor in Kean’s School of Communication Disorders and Deafness, treating those with aphasia has been a lifetime of service.

She still has vivid memories of working at a Veterans Administration hospital in Brooklyn in the late 1970s and early 1980s, as a doctoral student, when many returning GIs from Vietnam were being treated for head injuries, unable to speak or understand speech.

Specializing in neurogenic communication disorders, such as aphasia and dementia, Mary Jo took the academic route, joining the faculty at Rutgers University in 1979, and quickly becoming a member of NJSHA. She then moved to City University of New York in 1990 and then joined Kean University in 1995, teaching a generation of students about aphasia.

Now, in her academic retirement, Mary Jo is looking forward to the next chapter in her life to serve those with aphasia, as an inaugural member of the first-in-the-nation Mike Adler Aphasia Task Force. Other members of the task force from NJSHA include Linda Tucker-Simpson and Janice Dibling. Both Mary Jo and Linda are former NJSHA presidents.

The task force, expected to convene this fall for its inaugural meeting, will monitor the prevalence of aphasia in New Jersey, assess the unmet needs of the population, establish aphasia support groups, services and other resources and provide recommendations to the governor and state Legislature on behalf of the 70,000 New Jerseyans living with aphasia.

“I hope the task force will build a prominent set of supports for people with aphasia,” Mary Jo said. “There are many counties in New Jersey where there are no support groups for aphasia. Often, once you leave the hospital or rehabilitation center diagnosed with aphasia, there is so little knowledge out there to help you. Often, the nurses and social workers don’t know how to address it.”

The retired professor hopes that many of the county-based Offices on Aging will create programming for people with aphasia and their families, noting there are only a limited number of counties, including Bergen County, with initiatives in place to serve this population.

“What we really are hoping for is a network of community groups, where people with aphasia, their families and caregivers, can get information and services,” she said. “Another priority is investing to create aphasia support centers at universities with graduate-level speech-pathology programs.

Mary Jo, who lives in Metuchen, says the education of professionals is critical. “More than 90 percent of people with aphasia develop clinical depression,” she noted. “We have the research that shows that. But we don’t have many psychologists or counselors who know how to talk to someone with aphasia. There is movement now. Hopefully, the task force will provide support for counselors, especially in public health, to counsel people with aphasia so they don’t become so isolated.”

Mary Jo was chair of the original New Jersey Aphasia Study Commission, launched in 2012, which published its final report in May 2015. The commission’s findings led to the creation of the bill that establishes the statewide aphasia task force dedicated to connecting individuals with aphasia with existing treatments, while also expanding existing services.

“The National Aphasia Association recently estimated that 2.5 million people in the United States have aphasia,” added Mary Jo. “I hope that the permanent task force will help make many more resources available for people with aphasia throughout all of New Jersey, and encourage the development of these initiatives across the country.”

Also on the 13-member task force are the state’s commissioners of health and human services, six public members, and one representative from each of the following: the Adler Aphasia Center, Kean’s Center for Communication Disorders and Deafness, JFK-Johnson Rehabilitation Institute, Lingraphica, as well as private practice.

In announcing the initial seven members of the task force, Governor Phil Murphy said, “Aphasia is a challenge that too many of our fellow residents face. I’m proud to appoint this distinguished group to help find solutions and provide support for our friends and neighbors who face this condition.”

“Mike Adler was a very dear friend,” added Senate Majority Leader Loretta Weinberg. “And naming this task force in honor of his work was exceedingly appropriate. It is gratifying to finally see the task force fully appointed and ready to do the work on behalf of the thousands of people suffering from this tragic and debilitating disorder.”

For Mary Jo, now is the time to get down to work. The task force has been years in the making, the legislation has passed, the appointments have been made and now it is all about scheduling the inaugural meeting this fall.

“We all can’t wait to get started!” she said.