Kean Among Founding Members of New Statewide Aphasia Task Force

Kean’s Center for Communication Disorders and Deafness represented on Mike Adler Aphasia Task Force

Kean University’s Center for Communication Disorders will play a key role as New Jersey’s first-in-the-nation aphasia task force gets to work. The newly established Mike Adler Aphasia Task Force has been charged with assessing and addressing the unmet needs of individuals with aphasia, a communication disorder caused by a stroke or traumatic brain injury. Kean’s Center is one of five support and treatment programs named as permanent representatives to the statewide committee, signed into legislation by Governor Christie on Monday, May 1.

“At last, the more than 70,000 New Jersey residents with aphasia will have their voices heard and have a source of information statewide,” said Mary Jo Santo Pietro, Ph.D., professor in Kean’s School of Communication Disorders and Deafness. “That the bill requires the task force to include a representative from Kean’s Center for Communication Disorders and Deafness is an indication that the Center is recognized as the premier university program for the study and treatment of adults with communication disabilities.”

Santo Pietro was the 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 (S.2286/A.3083), sponsored by Sen. Loretta Weinberg (D-Bergen), Sen. Robert M. Gordon (D-Bergen), Assemblywoman Valerie Vainieri Huttle (D-Bergen), Assemblyman Gordon M. Johnson (D-Bergen) and Assemblyman Tim Eustace (D-Bergen), 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 Santo Pietro. “Kean’s Center for Communication Disorders has become a model support and treatment program here in New Jersey. We hope that the permanent New Jersey Aphasia 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 the state’s commissioners of health and human services, six public members, and, in addition to Kean University, one representative from each of the following: Adler Aphasia Center, JFK-Johnson Rehabilitation Institute, Lingraphica, as well as a private practice. The purpose of the Mike Adler Aphasia Task Force is to 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 legislature on behalf of the thousands of New Jerseyans living with aphasia.

“One of the most important responsibilities of this permanent task force is the establishment of community centers,” said Santo Pietro, noting the disparity between the need for long-term treatment and the three to six months of treatment that most insurance plans cover. “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. Another priority is investing to create aphasia support centers at universities with graduate-level speech-pathology programs, such as the one we have at Kean.”

Kean President Dawood Farahi, Ph.D., reflected on the importance of creating university-based support communities through the story of recent Kean graduate Yvonne Li ’16 of Manalapan. Li had a stroke in 2011, during her senior year. Since then, she has made tremendous progress, working with the faculty and practitioners at Kean’s Center for Communication Disorders and Deafness, as well as the University’s Occupational Therapy Community Cares Clinic. Faculty, students and staff provided treatment and support that helped Li return to her studies and earn her degree alongside Kean’s Class of 2017 at the Undergraduate Commencement on Thursday, May 18.

"We all get dealt a bad hand every now and then in life. Yvonne got dealt a bad hand," said Farahi. "I couldn't be prouder of all of you who put your hands together to help her reach her goal. That's what a university is––one gigantic family. What the Kean community did for Yvonne is tremendous, albeit nothing compared to what she did for herself with great determination and very hard work. It’s a team effort, just like the new aphasia task force must be a collaborative endeavor."

The Mike Adler Aphasia Task Force, named after the businessman, philanthropist and founder of the Adler Aphasia Center who passed away in September 2015, will be established immediately and will submit its findings and recommendations to the governor and legislature within one year from its initial meeting. Santo Pietro and other stakeholders will head to the State Capital on Thursday, June 22, for a senate dedication of a plaque designating Aphasia Awareness Day.