The British Stammering Association (BSA) was founded as the Association for Stammerers in 1978. Today, it has a membership of approx. 1,500, of which about ¾ are stammerers. The rest is mainly made up of speech and language therapists (SLTs, the UK term for SLPs) and parents of children who stammer. Stammering and stuttering are the same - the first being the British English equivalent of the latter term.
BSA's membership is comprised of Full and Associate members: Full members are those who have stammered beyond the onset of adulthood, and a parent/carer of a stammering child under the age of sixteen. All others are Associate members. Only Full members have the right to vote and stand in the elections to the General Committee, the governing body of the BSA.
This year, BSA has decided on a vision and mission statement which reads as follows:
Our Mission:
Our Values: Caring about people, development, empowerment, integrity, openness and quality.
BSA is a founder member of ELSA, the European League of Stuttering
Associations, and is a member of ISA.
At present, BSA employs seven full-time members of staff, three of whom are directly employed by projects run by the Association:
The project has been run in most areas of the UK's National Health Service and we have collected referral information, both pre- and post-Project, from more than 2,500 children. This will help us to identify whether a significant change in referral patterns has been effected.
In the course of our work, we have found that many children of Asian origin are being looked after by grandparents who are frequently not able to speak/read English, and are frequently unable to read texts in their native language. These children grow up in a dual language situation which puts an added stress on their speech skills, increasing the risk of a stammer developing. The project is therefore currently producing audio tapes of the parents advice leaflets in Bengali, Urdu, Somali, Gujarati and Punjabi. In addition, a printed Welsh language version of the advice leaflet is currently in preparation.
The project has also received funding from local charities to run free three-day training courses for speech and language therapists in the assessment and treatment of dysfluency in the under-fives. These courses have been very successful in increasing the SLTs' confidence levels when it comes to treating a young child.
The Information service is mainly based around the information leaflets produced by BSA with the help of our panel of speech and language therapy advisors: leaflets for stammering adults (www.stammer.demon.co.uk/adult.htm), their partners/spouses (www.stammer.demon.co.uk/partners.htm), parents of children who stammer (www.stammer.demon.co.uk/parents.htm), for teachers (see link above), for teenagers and young adults who stammer (www.stammer.demon.co.uk/teens.htm) and a leaflet giving information about the options offered by the National Health Services when it comes to stammering therapy approaches for adults (www.stammer.demon.co.uk/options.htm). In addition, BSA has produced the only nationwide directory of speech and language therapy provision - the National Health Service provides stammering therapy free of charge, and we can put enquirers in contact with their local SLT department. We also hold information on what kind of service is provided and whether there is a specialist in stammering therapy the area.
Membership Services
As BSA is a membership organisation, the services we have developed for our members are wide-ranging. One of the main components is Speaking Out, the Associations' quarterly magazine. Perhaps unusually for a stammering association's magazine, its main focus is not BSA's activities (although reported) but general stories revolving around stammering, personal stories and research issues (for a selection of past articles: www.stammer.demon.co.uk/Speaking Out.htm).
Unlike many other national stammering associations, BSA has no formal, constitutional links with self-help groups for stammerers. We try to keep in touch with these groups and hold contact details for enquirers from their respective areas; we also work closely with them when it comes to organising local Open days, or when a group takes on the task of organising the National Conference.
Members receive about 6-9 mailings per year, with information on news in the stammering sector. BSA holds regular Open Days all over the UK which are free to attend for everybody and which act as local focus points for members in a specific region. Open Days usually revolve around a guest speaker with several workshops. In addition, we are holding an annual, residential National Conference (this year's took place from 11-13 September 1998 near Sheffield), with about 90-100 residential visitors attending. This year, we tried out for the first time a new format - a Summer Social where BSA members (and their families/friends/partners) were invited to spend an afternoon together, with food and drink being served, and lots of time left for informal chatting. This has been very successful and will no doubt be repeated in other parts of the country.
BSA is also running a postal lending library with books, audio and video tapes for its members. For the cost of postage, members can borrow a wide range of items on stammering, ranging from SFA videos on Van Riper therapy to children's books with stammering characters. The acquisition policy for the library is such that members will probably not find highly academic titles, but rather books written for the lay person, such as general introductions to stammering or perhaps even biographies of famous
stammerers.
The telephone link-list and telephone support schemes are two other schemes run by BSA designed to support self-help activities amongst our members. The link list is merely an exchange of telephone numbers and basic information, and it is then left to members to call each other if and when they feel like it. Our Parents Network is operating on a similar basis, only confined parents of stammering children. The telephone support scheme is however much more structured and works on the principle of a conference call. At a given time, members of the scheme dial into a local rate telephone number and can speak to up to then other callers in a conference call. This 'meetings' are guided by a trained facilitator (a volunteer) who is usually a stammer him/herself.
Lee Caggiano, a parent of a teenager who stutters from Long Island and a speech language pathologist herself and I are founding a new organization within the stuttering community: FRIENDS: The Association of Young People Who Stutter.
We want to create this kind of outreach, the largest coordinated effort yet to bring hope and help and empowerment to these most innocent and most troubled members of the stuttering community.
Although strides have been made, all over our country, not to mention the rest of the world, children who stutter and their families generally live in fear, anger, frustration, and, most inexcusable of all, ignorance and isolation.
If we can reach the young people, we know we can ease the desperation they are feeling. We want to empower the parents of these kids like never before, helping them create a voice that, in no uncertain terms, will demand that their children's needs be met by their schools. And we want to connect these families with the all the effective and dedicated professionals out there.
Getting this organization going and keeping it running will not be easy, but I've been there before with the National Stuttering Project, and Lee and I are both committed to this mission for the long-term. Furthermore, we have a model to follow. Janice Westbrook established a similar organization called Aaron's Associates a few years ago and did an incredible amount of good before she had to give it up. Many of you received her wonderful Staff newsletter I
suspect.
In starting FRIENDS, we know the journey of a young person to whom fate has given a stuttering problem is going to be a struggle, a struggle on several fronts. There is no getting around that. Lee and I have begun FRIENDS to try and collect all the experience and solidarity and faith that exists in the stuttering community and lay it at the feet of young people who stutter so they will have a fighting chance. More than just letting them know they are not alone, we want to make them feel that we are there fighting with them in
their corner.
We want the parents of these young people to experience the relief of knowing that what their child is going through is not their fault, and that there are roads they can travel to make life easier for him or her. We want these parents unified and empowered enough to demand effective therapy in our schools.
We want to gather all of the wisdom and ideas and experience that exist among the professionals in our schools and clinics so that they might benefit from, not just the knowledge, but the spirit of each other.
We want the young people themselves to reach out and share their struggles with each other, eventually making themselves teachers and not victims of their stuttering. We want them writing, drawing, singing, reading, playing, and laughing about their stuttering, and thus enriching themselves and others.
Among the short and long-term goals of FRIENDS are:
FRIENDS: The Association of Young People Who Stutter, 1220 Rosita Rd., Pacifica, CA 94044-4223 / e-mail: JTAHLBACH@aol.com.
Web site: www.friendswhostutter.org.
You may subscribe to Reaching Out or order our books, the poster, and our T-shirt through our web site.
Our monthly publication Letting Go, is effective in helping people break the self-imposed isolation that is too often a bi-product of a lifetime of stuttering. Within the pages of Letting GO, is our youth supplement called Our Voice. Articles include stories and poems written by and for children of all ages and parents.
Our Youth Day Workshops For Children Who Stutter And Their Parents, are designed to educate families and local professionals - including speech clinicians and preschool teachers on early diagnosis and effective intervention strategies for children who stutter.
Continuing to focus on education and motivation, Our Regional Workshop Program was created to bring local members together for one-day workshops designed to educate, and inspire.
Our Annual Convention continues to be the highlight of our year. Children and adults who stutter, families and professionals, gather together for three days of sharing, learning, healing and just plain fun. The program includes special workshops designed to educate parents and local professionals on early diagnosis and effective intervention strategies for children, plus pool parties, workshops for parents and the young ages 6 and up, and special events for teens. With over 30 adult workshops, there is something for everyone .
At the heart of the NSP's work is our network of support group meetings nationwide. These meetings provide an opportunity for members to share with others their fears, frustrations, and triumphs in a safe and supportive environment, practice their therapy techniques and learn that they are not alone.With our support group network and membership participation on the rise, we are continually looking for new ideas and ways to continue growth and excitement.
Our new meeting format, Speaking Circles, has members talking from all over. The program provides public speaking experiences through the use of public speaking skills, videotaped speeches for review and positive feedback. It is inherently designed to raise self-confidence through the realization that we can be effective public speakers while stuttering.
Our web page (www.nspstutter.org), designed by NSP member/chapter leader Darrell Dodge, has extended our outreach to people all over the world. Even our Chapter with access to the Internet communicate through their very own ListServe!
Only with the help and assistance from our members can the NSP continue to work towards its goal of reaching the thousands of young and old who stutter. Increased involvement on local and national levels, keeping our focus on our mission to bring hope, dignity, support, education and empowerment to children and adults who stutter, the National Stuttering Project will continue to work hard to reach the over three million Americans who share the problem of stuttering. Together, we can bring our message of hope to people all over the world. Soon they will know that they are not alone.
Belgium is a very small country and divided into two parts : the northern part calls Flanders and is Dutch-speaking. The southern part is Wallonia and is French-speaking. The national stuttering association, BEST (BElangengroep STotteraars), is situated in the north, is was founded in January 1995. BEST consists of 12 members of the board and currently has100 members.
There are seven self-help groups and three times a year we organize a weekend. Stuttering is still taboo in Belgium and our aim is to reach people who stutter and to make them aware that there is help. There is also a change in the board of BEST. Last month Marcel De Wever resigned his post as chairman. The new chair is Gert Reunes.
We are nearing the first ISAD and we are preparing ISAD in co-operation with the University of Ghent. We made a programme for 22 October, it will start in the afternoon :
Part 1 : for students speech-therapist and speech-therapists :
2 pm : Opening
2.05 pm : Lucas Vandertaelen, a well-known TV-producer talks about his own experience as stutterer.
2.30 pm : Introduction self-help groups and stuttering associations in Flanders.
3.15 pm : Helping students with a handicap
3.30 pm : Information about stuttering
3.45 pm : Break
4.05 pm : Stuttering international (ISA and ELSA and a few words about the Worldcongres in South-Africa)
4.20 pm : Speech-training for children who stutter
4.45 pm : Speech-training for adults who stutter
5.05 pm : Stuttering and neurology
DINNER WITH THE SPEAKERS
Part 2 : for stutterers and parents of children who stutter
7.30 pm : Welcome
7.45 pm : What is stuttering (Professor Van Borsel, Neurologist)
8.0 pm : Stuttering at school (by R. Stes, speech-therapist)
8.30 pm : Helping students with a handicap (C. De Langhe of the University of Ghent)
8.40 pm : a parent of a stuttering child talks about his experience of
this problem.
9.0 pm : C. Hylebos approaches the stuttering-problem by involving the whole family.
9.30 pm : Questions and answers
10.0 pm : Close and thanks to the speakers.
by Norbert Lieckfeld
What we do:
Our Vision: A World that Understand Stammering
BSA will be holding a strategic planning weekend in October to see how this vision and mission can be applied in practical terms to our work.
by John Ahlbach
With great faith in all of you, both Lee and I hope to serve the stuttering community well in the years to come.
by Annie Bradberry, Executive Director
The National Stuttering Project (NSP) was founded in 1977 to meet the needs of the nearly three million children and adults in the United States who stutter. With members nationwide and over 70 self-help chapters in the United States, the NSP has become an important resource for the stuttering community. Through our various programs, activities and support groups the NSP continues to focus on ways to provide information and support to the many children and adults who stutter.
by Martine De Vloed
Vice Chair, BEST
by Stefan Hoffmann
Germany
Tasks and activities
The main tasks of BV are to stop the stuttering phenomenon from spreading even more and to help PWS to better cope with their life. It is the only institution in Germany providing overall assistance about stuttering independently.
BV is the umbrella organisation for more than 80 local Self-Help groups in all over Germany. It aims at representing even more groups in the future. This shall be achieved through seminars, which should help newcomers to become informed about various ways of dealing with their problem. Apart from that, other seminars deal with special types of therapy. These are offers to PHS, who want to become experts themselves. Stutterers who can't find appropiate therapy see that as a way to get the means for a possible self-therapy. The work in Self-help groups can also be a important support for stutterers in a professional therapy.
PWS are provided with free-of-charge info material and can use the publications of the Demosthenes publishing house. In recent years counselling became a more and more important part of the activities of the BV, especially as the requests by parents of stuttering children continued to rise significantly. Counselling is done by - giving advice on the phone about stuttering and different ways of therapy, - holding seminars, e.g. for parents of kids who stutter.
After being founded in 1983, Demosthenes published various books and videos which are interesting for PWS, professionals, parents, physicians, teachers and other people concerned with speach disorders. In 1998 Demosthenes will again publish new books: a new edition of the therapy guide, a comic about stuttering, and material for Self-help groups (self-help facilitation manual)
BV is just intensifying the cooperation with experts on the field of prevention. Training courses with therapists, preschool- and schoolteachers help achieving steady progress.
This institute, closely related to BV, works on evaluation and development of new therapy methods.
Outreach is our primary function. Canada's various media, including newspapers, magazines, radio, and television have been very supportive of this organization and have helped us to publicize Public Service Announcements about Speak Easy / stuttering. This ongoing publicity has generated a great deal of interest and has resulted in thousands of inquiries. Each requestor is sent a complete information kit consisting of the pamphlets: "Introduction to Speak Easy Inc.," "Suggestions for Parents of Stuttering Children," "'Relative' Support for Stutterers," "How the Teacher Can Help the Stuttering Child," "Guidelines for Greater Fluency," and "Attitude Changes Necessary for Stuttering Recovery."
In addition, they are sent copies of our monthly magazine, "Speaking Out," our sales catalogue, information on our annual CANADIAN STUTTERING CONFERENCES, a membership application, and other pertinent material. Our outreach, public information, parent advisory, library, referral, counseling, advocacy, awareness, and support programs are making a positive and profound difference. With the support of individuals, corporations, foundations, and government agencies, we ARE helping to improve the lives of Canadians who stutter.
We have found that most people who stutter prefer individual memberships. However as membership grows in an area, Speak Easy will assist those interested in forming a local group through our 70+ page manual "Starting A Support Group." This is meant to be a guideline and provides information on starting a chapter, operating a group, reasons why people join support groups, facilitating a meeting, things to do at a meeting, a public relations guide, and other advice. The success of the local groups depends upon their initiative and hard work.
3. Training to improve skills in human relations. For example, we study Rational Therapy, Transactional Analysis, Assertiveness Training and Gestalt Therapy.
The Japan Stuttering Project is now working intensively to develop a project for children between age of six and seventeen who stutter. JSP held the first summer camp for children nine years ago. Recently, with financial assistance from the local government we published a compilation of essays, written by children who stutter (and their parents), about their experiences. The authors were all people who participated in our summer camps. Through sharing their experiences during these camps, the children formed a kind of self-help group for themselves.
JSP also published a journal titled Stuttering and Self-expression in April. This journal describes the difficulties which people who stutter experience in expressing themselves and the learning process of self-expression through the workshops on assertiveness training. This journal also includes professional research papers on stuttering focusing on the issue of assertiveness.
JSP worked with 11 other self-help groups in Japan to edit a guidebook titled Self Help Group, which has been published by a major Japanese newspaper company. This guidebook describes the development and experiences of self help groups in Japan and gives suggestions for organizing a self help group.
JSP publishes our newsletter Stuttering Now every month. Many 'PWS', parents of children who stutter and many clinicians and speech therapists are reading it. JSP also has a web page (http://www.bekkoame.or.jp/i/chioaki/) for outreach into the community. Many PWS, and young people who stutter get access to us through the internet.
The Canadian Association for People Who Stutter (CAPS) is a national network of Canadian self-help groups for people who stutter. It was founded in 1991 as an outcome of the first national conference in Canada for people who stutter ever held in Canada. The first conference was in Banff, Alberta. CAPS is run entirely by volunteers who stutter. We work cooperatively with speech professionals but are independent of them. We are committed to offering an impartial forum for sharing of information, and to speaking as advocates for Canadians who stutter.
A major focus for CAPS has been the organizing, every two years, of national conferences. The next conference after Banff was CAPS 93 in Ottawa, followed by CAPS 95 in Toronto and CAPS 97 in Vancouver.
Our next conference, ABC / CAPS 99 is in Montreal on Aug. 19 -21, 1999. This conference will be organized in collaboration with a francophone self-help organization, Association des Bigues du Canada (ABC) . We will soon be sending out a Call for Proposals. Delegates to our conferences have come from as far away as Japan, New Zealand, Japan, South Africa and Germany.
We also work in collaboration with the California-based National Stuttering Project (NSP), most recently in staging a one-day International Stuttering Awareness Day event in St. Catharines, Ontario on October 24, 1998.
We have a quarterly newsletter and an active, award-winning Web site at http://caps.webcon.net. CAPS is also a founding member of the International Stuttering Association. We are actively involved in the work of the ISA Outreach Working Group, which seeks to establish contacts with parts of the world which are not yet represented in the ISA. If you have an interest in assisting with the work of the Outreach Working Group, or wish more information about CAPS, please contact us at caps@webcon.net.
At formal meetings (facilitated by group members only), we discuss topics related to our problems. For example at the last meeting we discussed - Family problems. In addition we have meetings with guest experts such as speech therapists and others.
The informal meetings (which are all fun) are birthday parties, meetings in pubs, restaurants, beach and much more.
There was an article published about us in the most popular newspaper in Israel "Yediot Aharonot". The article was excellent. We had many phone calls from people who were interested in joining and supporting the group. The result was that the group grew from 12 members to 25. Now we are in the process of absorbing the new members and that's neither easy nor painless process (especially for the old group members).
We have a twin group in Haifa with 15 members. Many of our informal activities are done with them. For example last weekend we were together on a two days excursion to the North of Israel. It was excellent. We are also cooperating in our formal activities too.
In the last weeks we are setting up a new organization AMBI which is the Israeli organization for people who stutters. The mission of AMBI is to support stutterers and to promote awareness and understanding of stuttering.