Learning Disabilities Association of Ontario

LEARNING DISABILITIES ASSOCIATION OF ONTARIO

How To Start And Run Your Own Self-Help Group

For Adults With Learning Disabilities

AUGUST, 1996

PREFACE

The need for a manual to assist adults with learning disabilities to facilitate self help groups originated in discussions with the LDAO Consumer Advisory Committee. Through understanding how to best develop a self help group and issues involved in the process that other groups have encountered, it is hoped that self groups will grow and flourish. LDAO would like to thank Michael Juarez and Sheri Cohen for writing this manual and the Consumer Advisory Committee for their guidance in the development of this project.

PART 1: INTRODUCTION...... 1

1)Who is this booklet for?...... 1

2) What is a self-help group?...... 1

3) Why did we write this booklet?...... 2

PART 2: STAGES OF GROUP DEVELOPMENT...... 3

1) What are the pre-planning stages?...... 3

2) Where do you find your group members?...... 3

3) How can the LDAO and your local LDA chapter help?...... 4

4) Thinking about screening referrals to the group?...... 4

5) How large should your group be?...... 5

6) What are the advantages & disadvantages of open & closed groups? 5

7) Where should you meet?...... 6

8) How often should your group meet?...... 7

9) Creating goals & objectives with the group...... 8

PART 3: CHOOSING AND BEING A LEADER/CO-LEADER...... 9

1) The role of leadership...... 9

2) What skills are needed to run a group?...... 9

3) Sharing responsibilities...... 10

4) What kind of support is needed when members share their thoughts andfeelings? 10

5) Should you have a co-leader?...... 11

6) Is it important to provide information about learning disabilities?12

7) How do I start a meeting?...... 12

8) Should I help group members to connect with each other?.....12

9) Evaluate the group's progress...... 13

10)Dealing with crisis situations...... 13

PART 4: RUNNING THE GROUP, THE FIRST MEETING, ROLES OFTHE MEMBERS 16

1) Norms of the group...... 16

2) Pre-group...... 16

3) What goals do you have for your group?...... 16

4) What guidelines should you follow?...... 17

5) What happens at a first meeting?...... 17

6)What happens at a second meeting?...... 18

7) Group dynamics: How should you deal with difficult group members? 18

8) Should you have speakers, or show videos?...... 19

9) Making contact with other support groups to identify similar

problems...... 19

10) What other activities would your group like to do?...... 20

PART 5: TROUBLESHOOTING...... 21

1) What happens if your group becomes too popular?...... 21

2) Develop natural leaders in your group...... 21

SUMMARY...... 22

REFERENCES...... 22

HOW TO RUN YOUR OWN SELF-HELP GROUP

A Manual for Persons with Learning Disabilities

PART 1: INTRODUCTION

1)Who is this booklet for?

This booklet is intended for adults with learning disabilities who would like to volunteer to become a leader of a self-help group.

2a) What is a self-help group?

The term "self-help" is used in place of "support" group. Self-help focuses primarily on taking responsibility for one's own actions and helping others to achieve the same. There are no professionals or "experts" involved in the process. Though support groups often use professionals as leaders, self-help groups share leadership responsibilities as all members are equals.

Self-help groups had their beginnings in the late 1960's and early 1970's. Since then they have become one of the most popular ways for people with difficulties or concerns to meet other people with similar issues. People have found that talking to someone who has had similar experiences has made them feel better about themselves and their situation.

These types of groups consist of usually two or more people with a similar problem or concern, who are willing to meet on a regular basis to share information, experiences, and feelings. It is the members themselves who decide on the group's structure, activities and membership. It is a place where men and women decide to work collectively.

2b) Empowerment

Fundamental to establishing a self-help group is the development and support for empowerment within individuals. You need to recognize that members bring with them their own problem-solving and decision-making abilities. Empowerment happens when people have the information, support and control over needed resources. Through sharing self-help groups can become powerful tools in the empowerment process. When certain resources are not available to someone, empowerment philosophy believes it is because the social system has failed to create opportunities for them.

3)Why did we write this booklet?

This booklet was written to provide knowledge and guidance to help adults with learning disabilities run their own self-help groups. We hope that by starting self-help groups around the province, this will provide support for adults with learning disabilities. Self-help groups can provide a safe place for us to express our successes and our concerns, and focus on solutions and coping strategies for our daily struggles. In time, we hope we can all feel confident to talk with our friends, families, employers and classmates about our disability and how it affects our lives.

PART 2: STAGES OF GROUP DEVELOPMENT

1) What are the pre-planning stages?

Wanting to start a self-help group is great, but putting some action behind your ideas is the next step. If you are alone with the idea, you have to get in contact with other people who would like to help. The Local LDA chapter or the LDAO may be able to help you find other adults in your area who would like to be part of a self-help group.

It is important to do some initial pre-planning before you meet with your group. Pre-planning involves asking many questions which will affect the structure of the group. Such questions include: What type of environment would be best to hold the meetings in? What would the group members like to get out of the group? Would the group benefit from one or two facilitators? Should the space be wheelchair accessible and close to the transit system? Issues of cost may also need to addressed. It can be quite helpful to investigate renting a space for free.

Getting this first planning meeting coordinated is a good first example of how you and your partners will have to cooperate. This first meeting is a chance for everyone to start learning about how learning disabilities can affect the way people function. As a leader of the group you should know that some people may have trouble with directions or even remembering the meeting. Be patient and plan for such problems. Make use of landmarks in giving directions and have maps available for the members. A phone call a few days before the first planning meeting is helpful. If people live close to each other, a car pool can be used as transportation as well as a reminder system. This also keeps alive the idea of getting together.

2) Where do you find your group members?

Deciding on what the focus of the group will be helps in defining where you would like to look for members. If you are a student and you want to start a student only group, then your school and other schools will be the best place to find members. If you have a strong interest in employment issues, asking if you can display a poster at the local Canada Employment Centre office is a possibility.

It may be beneficial for recruitment to place a free public service announcement in daily or neighbourhood newspapers or distributing flyers. Announcing your interest may enlarge your contacts. Contacting professionals such as: physicians, literacy agencies, employment centres, mental health agencies, College and University Special Needs Departments are also sources to investigate. Inform your local Clearinghouse of your intentions to start a self-help group. They will give referrals to your group and advertise for you. Publicity, word of mouth, and referrals are key for getting new members.

3) How can the LDAO and your local LDA chapter help?

Referrals.

Support in developing and running the group.

Information on learning disabilities and services in your community.

Your local LA chapter or the LDAO can provide you with the information on groups which already exist and people you can contact in your area for information. The LDA chapter and the LDAO can act as referral sources for your group.

4a) Thinking about screening referrals to the group.

Once you have had a few planning meeting with your members you may want to discuss the idea of screening who joins your group. Self-help groups limit their membership to people who have similar concerns. For example, students will have different concerns and ideas about how to help each other than people who are dealing with unemployment or social assistance. If someone wants to join a closed group but has different issues, it is the responsibility of the facilitator of the group to refer this person to the appropriate group.

If you decide to screen members you may want to consider:

Deciding how, where and when you advertise the group.

Being very clear what the group is about and the common experiences you are looking for.

Telling your LDA chapter resource facilitator the kind of person who would most benefit from your group.

4b) Non-Screened Groups:

You may decide not to screen your members and this would be up to you and your group. In smaller centres screening may not make sense. Those individuals who want to join a self-help group can do so. The only concern should be whether the individual may just think they have a learning disability or has been actually diagnosed. Those groups who are quite diverse can work well together, and bring enriched experiences to the group and the process. Different groups meet different needs.

5) How large should your group be?

This will depend on what you and your members decide the main purpose of the group will be. If you are interested in socializing and exchanging information, then you could have as many as 25 people. With a group this large you will also want to have volunteers who are committed to helping with all the tasks that go into running such a group successfully. Smaller groups, such as those from 6 - 10 people are usually more cohesive. In smaller groups, members can actualize their specific needs better. Support systems are likely to be established.

6) What are the advantages and disadvantages of open and closed groups?

An open group is one where you allow new members to join at any time.

The advantage of an open group is that you will always have new people joining. This can be refreshing to those members who come regularly. People often like to meet new people and hear a new life story. The older members will feel that they have something to offer the new members from their experience being in the group. The presence of a new member can remind long time members how the group has helped them and it can renew the reason for the group's existence.

The disadvantage of an open group is that members have to take time to introduce the new member to the ways of the group. They will have to be patient and listen to some issues that they may have put behind them. New members also may be confused about their role in the group and will need to be reassured that they are welcome. Sometimes a new member with a strong personality may try to dominate the group. This can upset the balance that the long time members have developed.

A closed group is one where you start with a set number of people and you do not allow new members to join until you need to replace those who have left the group, or those who no longer come to meetings regularly.

The advantages of a closed group are that members can become acquainted with each other's personal story. The group can develop a way of being with each other and establish friendships. Members will learn not only about themselves but about the other members as well. This can be a very powerful experience. The common experience of self-understanding that comes from talking together over a few months can allow the group to take on complex problems in a way that would be difficult if there were new members who had not gone through the stages of self-discovery.

The disadvantage of a closed group is that it never gets refreshed with the experiences of new members. The group has to learn to work together to help one another. If a member becomes bored with the process or is not achieving his/her goals this may then challenge what the group is trying to do. Attendance at some meetings may be small because you have finite number of members. You could also discuss running the group for a limited amount of time so everyone knows that it will end on a given date.

7)Where should you meet?

Once you have had a chance to talk with people who would like to be part of the group, arrange to meet at a convenient location. Someone's home, a local restaurant, or a park are possibilities. Contacting community centres, schools, churches/synagogues, health centres and local service agencies can be useful as they may offer space free of charge. It is important to find a location which people can travel to easily and where they feel safe.

To do the planning of your first meetings it is fine to meet at someone's house or at a coffee shop or restaurant. When you decide to run regular meetings it's best to pick a place other than a member's home.

Things to look for in a good meeting place:

It should be "neutral". This means a place where everyone will feel safe, comfortable and where the group will be undisturbed for 2 hours or so. People think that personal homes are comfortable, safe and neutral but they usually are not. Some of the problems which arise include are not enough chairs, misjudging the size of the room, pets which could bother some of the members, or hazards such as a bad step. It is also difficult for a home to be free from distractions and annoyances which are often not found in public buildings. Privacy and confidentiality are also concerns.

The space should be convenient.

Try to find a place which is accessible and quiet.

It should be in a safe building and neighbourhood.

Look for free and low-cost space.

Consider accessibility.

Most people will not visit unsafe neighbourhoods. Pay attention to safety issues for everyone but particularly for women in the group. Issues to consider are lighting around the meeting place, and the availability of transportation services and of parking space.

Consider the need to choose a space that is environmentally friendly. If members have difficulty with background noise, it is important to choose a space which is quiet.

8)How often should your group meet?

Most self-help groups meet two times a month. An example of bi-monthly meetings is the first and third Wednesday of every month. The purpose of the group and how often people want to meet will determine how many times a month they meet. Self-help groups for students or unemployed workers may want to meet once a week due to the intense nature of their circumstances. Social and educational groups may want to meet once a month because it takes more effort and time to organize this type of meeting. Groups that deal with feelings and concerns about how to live with learning disabilities may want to meet twice a month. This allows members enough time to think over what was discussed and discover new feelings. Deciding when and how often to meet should be made by group consensus.

9)Creating goals and objectives with the group

Deciding on objectives and goals is a process which is done collectively, as each member discusses their hopes and expectations while participating in the group. Generally commonalities and differences exist in all groups and it is through the process of goal formation that issues get worked through. Objectives and goals are first decided on individually and then agreed upon by group members as a whole. Goals can be both short-term and long-term.

PART 3: CHOOSING AND BEING A LEADER/ CO-LEADER

1) The role of leadership

As a leader, you must attempt to lead the group through maximum participation and involvement of the members. Decisions about goals, purpose, tasks and agendas are done collectively. Your role as leader is to serve primarily as a guide (facilitator), encouraging member participation and attempting to ensure that each member has equal rights to participate. In a conflict, the facilitator will help the group resolve the issue or problem in a way which benefits the group as a whole. It must be emphasized that the facilitator is part of the group and it is the group as a whole that decides what changes need to occur.

Learning Disabilities Association of Ontario

TABLE OF CONTENTS