Grant Proposal for the Year of the Child Who Stutters National Symposium

National Symposiums

Need for Project

The National Stuttering Project ("NSP") has been successfully facilitating workshops for parents of children who stutter since its inception in 1977. We have seen first hand the significant effect the experience can have on participants.

"The best part was being able to relate to stories of other parents and to know we have so much in common." Parent participant, Pasadena workshop 1994.

From these workshops the NSP has learned that many parents feel isolated and are unaware of ways they can help build their child's self esteem and improve communication skills. Providing parents with training and access to local resources. such as speech professionals, where they can receive support and information is key to helping children who stutter.

Stuttering is a complex speech disorder that affects personal and academic progress because of its impact on a child's emotional and social development. Studies have found that if all children who needed therapy were enrolled during their preschool years. About 80% of the stuttering during school and later life could be prevented altogether (Starkweather1 1980; Costello 1983; Riley and Riley. 1984). While therapy is important, the critical role of parents in partnership with speech professionals cannot be emphasized enough.

The role of parents can no longer be denied; without the involvement of parents, clinicians become powerless to help the child beyond the confines of the clinic room. It is parents who enable their child to develop fluency and communication skills and thus take ownership of their child's progress. (Austin & Cook 1995)

In addition, many speech clinicians could benefit from the latest information regarding stuttering and the most effective methods for treating children.1

The proposed project addresses the need to foster working relationships between parents and speech professionals while providing up-to-date information on stuttering to both groups. It will create forums where parents and speech clinicians can come together to learn from recognized experts in the field and share information about diagnosis, intervention, treatment, resources and other issues surrounding raising a child who stutters.

Project Objectives

The NSP is a consumer run organization with local chapters throughout the United States. NSP is dedicated to empowering consumers through self help and providing support groups, education and training to people who stutter, parents, professionals and the general public.

The NSP Board of Directors has designated 1996 as the Year of the Child Who Stutters ("YCWS") with the goal of promoting education and providing support to parents and professionals who can reduce stuttering and its negative impact on children and families. Consistent with these goals, the objectives of the YCWS National Symposium Project are:

1. To increase the knowledge of families and professionals1 including

speech clinicians and teachers. regarding early diagnosis. effective

intervention and treatment of children who stutter.

2. To provide materials on stuttering to families and professionals, including information on the right to school based therapy under the Individuals with Disabilities Education Act ("IDEA").

3. To network families and professionals with existing local, regional and national resources including speech centers and consumer and professional groups.

4. To develop and distribute materials to consumer and professional groups regarding how to organize a symposium on stuttering including flyers, media packet, agenda and suggested speakers.

Plan of Operation

The NSP proposes to launch a national campaign entitled the Year of the Child who Stutters ("YCWS") under which it will coordinate nine (9) regional symposiums throughout the United States. These symposiums will showcase national experts --D. Breitenfeldt, Ph.D., G. Cooper, Ph.D., B. Murphy, Ph.D., G. & 3. Riley, Ph.D. 'S.. W Starkweather, Ph.D. and J. Westbrook, Ph.D. -- who have already agreed to be speakers. Symposiums will deliver up-to-date training to families and professionals regarding stuttering including diagnosis, intervention and speech therapy techniques for children. In addition, information regarding resources, parental rights under IDEA and self help materials will teach families coping mechanisms and empower them to advocate for their children. The project anticipates reaching approximately 450 individuals nationwide.

Project coordination will be provided by NSP Executive Director Michael Sugarman (MBA, MSW), with assistance from NSP employees and volunteers to organize and staff the symposiums. The Executive Director will be responsible for ensuring project implementation, evaluation and oversight of the budget.

Sites for the symposiums have been identified and include: Chicago, IL., Dallas, TX., Denver, CO., Fullerton, CA., Los Angeles, CA., New Orleans, LA., New York, N.Y., Spokane, WA., and Washington. D.C. Organization of local steering committees, consisting of professionals, consumers and parents interested in working on the project, is underway. These committees, under the direction of the Executive Director, will assist in outreach efforts and local media campaigns.

Importantly, many local speech centers -- including California State University, Fullerton, CA., Collier Center, Dallas, TX., Eastern Washington State. Spokane1 WA, Hofstra University, New York, N.Y., and Pasadena City College, Pasadena, CA.-- have agreed to host these symposiums. This link is key to ensure that the YCWS reaches consumers and professionals in need of education.

In conjunction with the Stuttering Foundation of America ("SFA") and the American Speech-Hearing-Language Association Consumer Affairs Division, comprehensive materials will be available to families and professionals. Other materials that will be produced by the project include outreach flyers, public service announcements and articles in community newspapers.

The one-day symposiums will follow a similar format. Three symposium sites will add "Youth Day" activities where teenagers will be able to host their own workshops and address issues particular to them. The sample format for symposiums follows:

8:30-9:00 a.m.

Registration and continental breakfast

9:00-10:00 a.m.

"Personal story: Self Help and Stuttering" by adult who stutters and/or parent of a child who stutters

10:15-12:00a.m.

"Stuttering: Diagnosis, Interventions and Treatment" by national expert

12:00-1:00

Lunch (box lunch available for an additional fee; please see registration form)

1:00-2:15 p.m.

Workshop session #1 (Choose from one of two sessions)

Session A

"Issues on Treatment of Child of Child who Stutters" facilitated by adult who stutters of parent of a child who stutters

Session B

"Issues on Raising a Child who Stutters" facilitated by adult who stutters or parent of a child who stutters

2:30-3:45 p.m.

Workshop Session #2 (Choose from one of two sessions described above)

4:00-5:00 p.m.

Open panel discussion with speakers and evaluation

Evaluation

Participants will be asked to complete and return a written evaluation of the conference materials1 training design, speakers and accommodations at the end of each symposium Evaluations will be mailed to the Executive Director to assess possible changes in the format for future symposiums. In addition, the Executive Director will complete a final report at the close of the project for presentation to the NSP Board of Directors and ASHA.

Replicability

The NSP will produce a handbook on Organizing Your Workshop. It will include how to organize a workshop in your local community with ideas for outreach, media, materials and speakers. The handbook will be distributed to consumer and professional groups at conventions and be advertised in NSP, SFA, and ASHA news3tters and Advance magazine.

Time Line for Action

Assemble planning teams and select training sites and dates --January-February 1996

Develop agenda, materials (including evaluation questionnaire) and secure

speakers -- January-February 1996

Develop and conduct media strategy including PSA announcement and model articles for local parent and community press -- February-April 1996

Compile and send registration flyer to regional mailing list and contacts including clinics, professionals, preschools and families -- March-April 1996

Assemble materials from other sources for distribution at symposiums --March 1996

Host Symposiums -- April -July 1996

Develop and distribute Handbook Organizing Your Workshop --September-November 1996

Complete and deliver final report to NSP and ASHA -- November 1996

1 Numerous authors indicate the need for additional education and training for clinicians to update their skill levels. Fosnot S. (1995); Gregory. H. (1995)

References

Costello, J. (1983) Current behavioral treatments for children, in Prins and R. lngham (Eds.), Treatment of Stuttering in early childhood: Methods and issues. San Diego: College-Hill Press.

Fosnot, S., (1995)"Some Contemporary Approaches in Treating Fluency Disorders in Preschool. School-Age, and Adolescent Children', Lang., Speech. Hrg., Services in Schools Vol. 26

Gregory, H. (1995) "Analysis and Commentary". Lang.. Speech. Hrg., Services in Schools Vol. 26

Riley, G. & Riley, J. (1984) A component model for treating stuttering in Children. In M. Reins (Ed.). Contemporary approaches in stuttering therapy Boston: Little. Brown & Co.

Rustin, L., & Cook, F. (1995) "Parental Involvement in Treatment of Stuttering", Lang. Speech, Hrg., Services in Schools Vol.26. 127-135.

Starkweather. C.W. (1980) A multi process behavioral approach to stuttering therapy. Seminars in Speech, Language and Hearing 1, 327-338.