User:TPadilla2014/AphasiaAccess



AphasiaAccess is an international professional organization of providers of communication supports and intervention to people affected by aphasia. Aphasia is a language disorder that impairs the expression and understanding of spoken language, reading, and writing. It occurs most often from a stroke or brain injury. It affects a person’s ability to communicate but does not affect intellect. The organization embraces the Life Participation Approach to Aphasia (LPAA). Members include speech language pathologists, speech and communication practitioners, researchers, educators and students, health care practitioners, first responders, and community service organizations.

The organization’s main headquarters are located in Moorestown, New Jersey.

Todd Von Deak is the organization’s executive director.

Nina Simmons-Mackie currently serves as the organization’s president.

History
AphasiaAccess was founded by leaders in the field of aphasia in 2013. The founders were researchers, program leaders and founders, and educators working with people with aphasia. Their goal is to expand the breadth and application of LPAA principles.

AphasiaAccess’ organizational bylaws and structure were established in 2013. 501c3 status was established in 2014. AphasiaAccess’ inaugural Leadership Summit Conference was held in Boston, MA in 2015.

Mission
The mission of AphasiaAccess is to grow a network of professionals to advance lifelong communication access for people with aphasia.

Structure/Membership
AphasiaAccess is a 501c3 non-profit organization. It is governed by a Board of Directors. Activities are carried out by an Executive Director and four volunteer committees: Finance and Development, Governance, Communications and Marketing, and, Research and Education. It is supported by donations, grants and affiliate fees.

AphasiaAccess members represent the medical and health care, social services, and business communities. Four types of affiliations (memberships) are available with associated annual dues and benefits. They are: Corresponding Affiliate, Student Affiliate, Individual Affiliate, and, Organization Affiliate.

Activities
AphasiaAccess provides educational, networking and resource information to professionals helping people with aphasia. The organization employs online presence to connect affiliates with best practices in the field of aphasia via an online resource directory and library of research papers and training videos, and a monthly e-newsletter. Materials support the implementation of aphasia programs, mentoring for best practices in LPAA, and opportunities for professional sharing of programmatic activities. Peer to peer networking allows real-time discussion of practice issues and programmatic content.

A conference, AphasiaAccess Leadership Summit, is held bi-annually. This brings together members and thought leaders in the field to share research, products, and programmatic innovations. It supports the development of professional relationships to continue support of people with aphasia throughout the full continuum of the health care process.

Impact on Aphasia and Those with Aphasia
AphasiaAccess has had a profound impact on the lives of those with Aphasia. In late 2015, New Jersey lawmakers were planning to create a permanent statewide task force to connect victims of stroke with available treatments as well as expanding available services. The bill establishing the New Jersey Aphasia Task Force would allow the state to better deal with Aphasia by getting more accurate numbers of residents with aphasia or victims of stroke, assess the needs of victims, and more.

In regards to the bill, Todd Von Deak, executive director of AphasiaAccess, spoke on its behalf. Von Deak "said increased support for people with aphasia in New Jersey could benefit a broader population of people with communication-related disorders. [Aphasia Access] has been working to train healthcare workers in to recognize patients with aphasia and improve their communication with them."

Not only has AphasiaAccess had an impact in the United States, their efforts have made impacts abroad. During the 2015 AphasiaAccess annual Leadership Summit in Boston, MA at Boston University, Fundafasia, the Aphasia Foundation of Argentina , and its president, Silvia Rubio-Bruno , announced “La Escuela para personas con afasia,” or the School for People with Aphasia. The Summit itself presents the latest in research and program ideas to assist those with aphasia.

Support for the Life Participation Approach to Aphasia (LPAA)
The Life Participation Approach to Aphasia is a consumer driven service delivery approach that supports individuals with aphasia and others affected by it in achieving their immediate and longer-term life goals.

The Life Participation Approach to Aphasia supports practices that are applicable over various stages of management of aphasia and precipitating diagnoses. LPAA recognizes the highly individualized nature of aphasia and the need for personalized, client directed approaches. Its support of re-engagement in life for patients has led to the use of a broader range of investigation and a wider range of providers to include in the aphasia community. These in turn have impacted provider roles, educational needs and research directions.

AphasiaAccess recognizes the lifelong impacts of aphasia on the people with aphasia and their family and social network. AphasiaAccess endorses LPAA’s consumer-directed principles to help a person with aphasia re-engage in a full, active, independent life.

Additional Reading

 * Lyon, G. Coping with Aphasia, Singular Publishing Group, Inc., 1997.
 * Simmons-Mackie, N., King, J. Beukelman, D. Supporting Communication for adults with Acute and Chronic Aphasia, Paul H Brookes Publishing/2013.
 * Elman, R. (Editor). Group Treatment of Neurogenic Communication Disorders, The Expert Clinician’s Approach, Second Edition. Plural Publishing Inc. November 2006.
 * Elman, R. "The Importance of Aphasia Group Treatment for Rebuilding Community and Health", Topics in Language Disorders. 27(4):300-308, October / December 2007.
 * Helm-Estabrook, N. Albert, M. Manual of Aphasia And Aphasia Therapy. Second Edition, Pro-Ed INC., 2004.
 * Kagan, A. Simmons-Mackie, N. Beginning with the end: Outcome driven assessment and intervention with life participation in mind. Topics in Language Disorders, 2007 27, 309-317
 * LPAA Project Group ( 2000). Life Participation Approach to Aphasia: A statement of values for the future. ASHA Leader,5,4-6.ASHA Leader. Retrievable at www.aphasiaaccess.org
 * Stroke Connection, Life Participation Approach to Aphasia (LPAA) Centers Spring 2015.
 * Caswell, J. "Making Life Bigger than Aphasia", Stroke Connection, Summer 2014.
 * Shadden, B.; Hagstrom, F "The Role of Narrative in the Life Participation Approach to Aphasia", Topics in Language Disorders. 27(4):324-338, October/December 2007.
 * Simmons-Mackie, N. Social approaches to aphasia intervention. In R. Chapey, Language Intervention Strategies in Aphasia and Related Neurogenic Communication Disorders (Fifth Edition), pp 290–318. NY:Lippincott, Williams & Wilkins. 2008.
 * Simmons-Mackie, N. (Ed). . Aphasia Centers: A Growing Trend in North America. Special Issue of Seminars in Speech and Language, 2011. 32 (3).
 * Proceedings of AphasiaAccess Inaugural Leadership Summit Conference, March 2015.