Special needs and disability support groups

tour special needs family

Meet other families with special needs. The goals of our online community is to provide a forum where special needs families can meet and share information, stories, questions, concerns and support. We welcome you to join our Special Needs Family on Facebook.

Special needs, disability and other support groups serve as a resource for patients, family members and practitioners offering emotional support to the members through a collective effort.

Here are some Internet resources to find support groups:

Disability support groups - Search from Google

Disability support groups - Search from Bing

Yahoo disability support groups - Search from Yahoo groups

Google disability support groups - Search from Google groups

cshcn.org - The Center for Families with Special Needs

The support group provides a network of services for patients and practitioners providing accurate and current information by serving as a central resource. Research is promoted through the free sharing of treatment efforts, published research and data collection.

The basic purpose of support groups is to provide mutual aid and emotional support for people who share the same predicament. The value of support groups has, for some time, been shown to benefit patients through faster recoveries and increased well-being.

Special needs, disability and other support groups are made up of people with common interests and experiences. People who have been through, or are going through, a similar circumstance can do more than sympathize with you — they can relate to what you are going through and keep you from feeling like you are alone.

You may not think talking to other parents is for you or that telling your problems to a bunch of strangers could be any help at all. Perhaps your grief seems too recent or too open to share. Maybe you don't want people to see your hurt and disappointment, Or maybe you feel it's your problem and it's just too personal to share. Or maybe you feel guilty, or angry. Whatever the reason, you stay in isolation and fight the battle alone.

The first time you go to a support group meeting, you may be disappointed. Conversation may not flow, or it may flow too much and you may not get a chance to say anything at all. One person may dominate the conversation and you may not be the least bit interested in what they're saying. It may not seem like it's for you at all. Not every support group will be right for you and maybe you should try to find another if the one you're in doesn't seem to fit.

But the benefits of being around others who share many of the same problems you do can be so advantageous to you. You'll find that many of the feelings you don't even admit to yourself are shared by others. Many of the unique problems you seem to encounter daily are not so unique after all. Solutions to baffling situations may become evident to you as you listen to others.

Time and again I've heard other parents say, "I found out I wasn't alone!" when talking about support groups. It's a statement that's part of nearly every parent's story. If you haven't joined (or started) a support group, think about it.

Many people are unaware of the additional benefits of joining a support group — support groups can be a great place to find practical tips and resources. At many support groups you can find:
* Information about medical treatments, research and strategies
* Information about public policy, legal resources, privacy laws, and protection from discrimination.
•Information about researchers.
•Financial assistance.

What Kinds of Support Groups Are Available?

Special needs, disability and other support groups can vary in how often they meet, their area of focus, and who runs them. Some support groups are run by professional facilitators or by specific groups (for example, the American Cancer Society). There are also peer-support groups, such as Special Needs Family, that were started by individuals and do not have a professional facilitator.

Support groups exist for almost any topic you can imagine. For example, groups can be for people with a specific genetic condition, a specific relationship to an affected person, such as a sibling, spouse, or child, looking for services such as short-term stand-in help for caregivers, rehabilitation services, or financial and estate planning or dealing with grief and loss.

Some groups are educational and structured. For example, the group leader may invite a doctor, psychologist, nurse or social worker to talk on a topic related to the group's needs. Others emphasize emotional support and shared experience. Some deal only with a specific type of disease, such as breast cancer, while others have a broader focus.

Frequency of Support Group Meetings

How frequently a group meets depends on its purpose and the needs of its members. Large groups with many chapters may have local meetings once a month and annual meetings for the whole organization. Small groups intended to address a specific issue — for example, behavioral changes around managing asthma or diabetes — may meet once a week for a set number of weeks. The life span of a support group depends on its focus and the needs of its members. Some groups are designed to run for only four to eight weeks; others last for many years.

Meeting Places for support groups

Support groups can meet anywhere, including on the Internet. Many hospitals offer support groups, but groups can also meet in individual's homes, churches or temples, libraries, or other community buildings. There are also online special needs, disability and other support groups, which may be especially helpful for people who are homebound, have limited free time to attend meetings, or don't have a group nearby that meets their needs.

Optimum Size for support groups

Optimum size varies depending on the purpose of the group and the needs of the members. Some groups have fewer than ten members; others may have thousands. Large groups sometimes have as their goal raising money, influencing public health policy, or educating the public. Emotional support groups — for example, around grief or loss — typically are small, so that participants can feel safe expressing feelings.

Comparing Peer Support Groups With Those Facilitated by A Professional

Professionals can contribute information and resources and help with organizational tasks such as planning meetings, setting up the meeting room, sending out messages, and getting speakers.

Some people prefer groups facilitated by professionals; however, others may prefer a peer environment. People with genetic health conditions often become "experts," in that they know a great deal about the medical, social, and emotional aspects of having a particular disease. They may want to connect with others who can help strategize solutions from an "I've been there too" perspective.

One approach is not better than the other. What is important is for the individual to find a compatible group.

How to Find A Support Group

What support group, if any, you choose may depend largely on what's available in your community and whether you're confined to your home, have access to a computer or are able to travel. To find a support group:

•Ask a health care provider for assistance. A doctor, nurse, social worker, chaplain or psychologist may be able to recommend one.
•Look in your local telephone book or check your newspaper for a listing of support resources.
•Contact community centers, libraries, churches, mosques, synagogues or temples in your area.
•Talk to your priest, pastor, rabbi, imam or other religious or spiritual leader.
•Ask others you know with the same illness or life situation for suggestions.
•Contact a state or national organization devoted to your disease, condition or life situation.
•Your local library may have lists of organizations dedicated to people in your situation.
•Search the Internet.
•Many state and national organizations have websites that offer information on support groups. Some offer expert/professional response features.

Most special needs, disability and other support groups are free, collect voluntary donations or charge only modest membership dues to cover expenses.
What Makes A Good Support Group

Although what is "good" differs for each person, there are some universal signs that indicate a well-functioning group:

•Up-to-date, reliable information
•Prompt response to contacts
•Regular meetings or newsletters
•Access to appropriate professional advisors
•A clearly stated "confidentiality" policy
•Particular qualities the individual is seeking

Factors to Weigh When Choosing A Support Group

A person looking for a support group might consider the following:

•Are you seeking specific information about medical treatment options?
•Peer counseling?
•How far can you travel?
•Do you need help with transportation?
•Is the kind of group you want just for someone who is ill, or also for family members?
•What about the emotional dynamics of the group?
•Are you looking for a group where you can openly discuss feelings, or are you primarily interested in finding services to further education and research?
•Are you seeking a group run by a professional facilitator, or a peer-support group?

Each type of support group has its own advantages and disadvantages. You may find that you prefer a structured, moderated group. Or you may feel more at ease meeting less formally with a small group of people.

If you're uncomfortable about sharing personal information with a group of people you don't know, of any size, consider attending one meeting and listening, rather than talking. Or consider the Internet. But be careful. The anonymity of the Internet may be appealing, but the trade-off may be that you don't know who else is online with you or whether you can believe everything you read. Look for groups affiliated with a reputable organization or hosted by an expert.

If you decide to take part in a group (real or virtual), try it out a few times. If you don't find it useful or comfortable, you don't have to continue. You may have to experiment with different kinds of support groups before you find one that meets your needs.

Starting A New Peer Support Group

Starting a new group is time consuming and takes a lot of work. Additionally, an established group probably has certain advantages, such as already established informational materials, meeting times and places, and professional contacts.

However, in some cases the type of group you need may not exist in your local community. Ways to begin a new group include getting the help of a local hospital, doctor, church or temple. (Ministers and rabbis often know about the health conditions of members of their congregation and can facilitate sharing information and bringing people together.)

After a group is started, the members may want to consider listing it through the local paper or an associated organization, so that other people can learn about the new resource.

The goal of our support group is to assist in strengthening patient coping skills and to provide a network of information to both patients and practitioners world-wide.

Support groups should consider adding some fun to their plans. Nothing can help bring your support group closer together then having some fun yet effort free activities or games together. Party games, or other such things can really bring the group closer together, and take some of the edge off.

Even in online communities I participated in, we always tried to have some lighthearted amusement. People attend a support group to meet one another and experience comradery with others with similar problems. If support groups’ meetings become a long list of presentations, stressful problems, ect., and one feels drained upon leaving their support group rather than uplifted, then we may be missing the point. So, I would always consider adding some fun!

Internet support groups

In addition to traditional support groups, the Internet offers online special needs, disability and other support groups and communities.

* Newsgroups are like virtual bulletin boards, with lists of messages on similar topics posted by users. You can read some or all the messages, called posts. You can post a message or simply browse the list.
* Electronic mailing lists are different from newsgroups and operate by e-mail. To participate you join a mailing list and, as a member, you receive e-mails from other members. Each time anyone in the group sends an e-mail, you get a copy. If you send an e-mail, a copy goes to everyone.
* Chat rooms operate on the same premise as newsgroups and electronic mailing lists. The difference is that they operate in real time, and there's no delay in the exchange of information. It's like being in a room talking to others who have a similar interest. But you're not talking out loud. You're talking through your keyboard.

If you're not computer savvy and you don't wish to leave home to attend meetings, you can join a support group in which members write personal letters to one another (round robin groups). Telephone-conference support groups and even videoconference support groups have been and are available on an experimental basis. And if those options don't appeal to you, you may wish to consider one-on-one counseling. What online references do you suggest for using when looking for a support group online?

For online groups the best place to start is definately Yahoo! Groups. They have a list of groups numbering in the hundreds. There is a group for everybody there, many with an emphasis on certain topics and also many specifically for people of a particular Newsgroup location. Newsgroups are a very good medium for support groups too and there are good newsgroups that able people should be able to access through their windows email websites.

Support group benefits

People with chronic medical conditions — cancer or mental illness, for example — can benefit from attending support groups. You may also find a support group helpful if you've been a victim of abuse or crime, you're battling addiction, or you're caring for a special needs child or elderly parent.

Attending a support group isn't mandatory and not everyone wants or needs support beyond their family and friends. Depending on your circumstances, however, it may be helpful to turn to others outside your immediate circle for help. You may feel less alone with your situation when talking with people who face or have faced similar challenges.

In a support group, you'll find people with problems similar to yours. Group members will offer you emotional support, practical information and tips on how to cope with your unique situation. The key is finding a group that matches your needs — and personality.

Use caution when choosing a support group

Beware of support groups that put their interests before yours. Look for these red flags:
•Promises of a sure cure for your disease or condition
•Promises of quick solutions to your disease, condition or life situation
•Meetings that are predominantly "gripe" sessions
•A group leader or member who urges you to stop medical treatment
•A charismatic group leader who demands cult-like allegiance
•High fees to attend the group or having to purchase products or services

If there's anything that makes you feel uncomfortable — from profane language to the credentials of the group leader — try another group. Remember, your goal is to find a support group in which you feel safe and comfortable enough to listen to others and to discuss your unique situation.

Special needs, disability and other support groups are a place for people to give and receive both emotional and practical support as well as to exchange information. People with genetic health conditions, as well as their friends and families find support groups to be a valuable resource — a place where people can share medical information, get confirmation that their feelings are "normal," educate others, or just let off steam. When someone is searching for a support group, the single most important thing to remember may be: if the group doesn't feel right to you or doesn't match your needs, try a different group.

Here some other disability/special needs support groups:

Enabled Online - Here at Enabled Online, we enable our readers to connect with people with disabilities and their families and to connect with useful resources. ---

Online Play Group - Our playgroup directory includes more than 600 local neighborhood playgroups, babysitting co-ops, homeschool support groups, grandparents’ groups, nannies’ groups, parents’ groups and clubs ---

PENPALS for kids & teens, Blogs, Teacher ads, penfriends, forums for kids - Students of the World - Penpals for young people, Blogs, Clubs, Educational games, cultural information (geography, statistics, pictures, schools) about all countries of the World

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