As a powerful research and communications tool, the Internet has already made an enormous impact on the mental health consumer movement. Advocates in the movement have been using the worldwide web to locate information about legislators and other decision-makers, as well as to locate information that supports their positions and keep tabs on their legislative adversaries. Consumers have also developed their own web sites to publicize and strengthen their advocacy efforts, and have begun to use e-mail lists as a powerful tool for linking advocates and announcing developments.
Locating government resources
Advocacy means influencing decision-makers, and the first step in becoming an advocate is to find out the identities of the parties making the decisions that affect you. Another Clearinghouse Technical Assistance Guide, Systems Advocacy, which is available at<http://www.mhselfhelp.org/>, explains the various categories of decision-makers who impact consumers. That Guide also contains a workbook that allows you to record contact information for state mental health agencies, state legislators, federal legislators, and other decision-makers. Here, we’ll show you how to gather contact information for elected and unelected officials, and you can do yourself an enormous favor by using the workbook as a convenient place to record information.
At the front line of the decision-making process are the providers who actually interact with consumers. Although providers act individually to a large extent, provider groups also can play a large role in shaping the way that professional providers interact with consumers. Many advocates therefore include provider groups as targets for their educational campaigns. You can locate your state medical board through<http://www.docboard.org/>, and the American Medical Association (AMA) is located online at <http://www.ama-assn.org/>. Other professional groups are easily located with search engines like <http://www.yahoo.com/> and <http://www.hotbot.com/>.
Consumer advocates should gain an understanding of the decision-making process in the public health system, which contains local, state, and federal components. The federal agency responsible for the Medicare program and partially responsible for state Medicaid programs is the Health Care Financing Administration (HCFA),<http://www.hcfa.gov/>.
From state to state, the parties responsible for Medicaid decisions and other public mental health programs vary widely, but the confusing search for decision-makers can be simplified greatly by using the web. A good place to start looking for state mental health agencies is the National Association of State Mental Health Program Directors,<http://www.nasmhpd.org/>. You can find contact information for a wider variety of decision-makers in the State Resources Guides located at <http://www.mentalhealth.org/publications>.
State legislatures are also important, and most, if not all, states have developed web sites for their legislatures. You can find your state legislature’s web site most easily by searching for "state government" and your particular state at<http://www.yahoo.com/>. State legislatures’ web sites generally allow you to find out the identity of your personal representatives in each house of the legislature.
Fortunately for advocates, the United States Congress has developed excellent web sites,<http://www.house.gov/>, <http://www.senate.gov/>, and <http://thomas.loc.gov/>. The latter web site can be used to track any pending legislation in either house. Not only do the congressional web sites offer you the opportunity to confirm the identity of your Representative and two Senators, but they also allow you to find out vital information such as committee membership.
Committee membership is an important concern for consumers interested in federal legislative advocacy: almost every bill must work its way through subcommittees and committees before it can become law. The web sites of some of the important committees and subcommittees are listed in Table 1.
Consumer advocates working on the federal level should not underestimate the policy work done by federal agencies. In addition to HCFA, which we’ve already discussed, some important federal agencies are listed in Table 2.
Don’t forget the White House as an arena for federal advocacy. The White House maintains a web site at<http://www.whitehouse.gov/>, and the President’s Committee on Employment of People with Disabilities is located at <http://www50.pcepd.gov/>.
Advocacy groups on the Internet
As you know, you are not alone in the consumer movement, and you are not the only consumer interested in advocacy. Many advocacy groups have established web sites, which allow them to publicize their activities to the general public and to potential advocates, educate the general public and decision-makers about the issues, raise money through donations, and make contacts with others in the movement.
If you are interested in becoming involved with an advocacy group, and even if you are already involved but are curious about other groups, you can e-mail us at the Clearinghouse,firstname.lastname@example.org <mailto:email@example.com>, and we’ll be happy to put you in touch with advocacy groups working in your area. The worldwide web is another excellent source of information about existing advocacy efforts. As always, we’ll point you in the right direction but recommend that you do your own searching as well.
Advocacy groups on the worldwide web
Web sites of national organizations are an excellent source of advocacy information. This holds true even if you do not share the same beliefs as the national organization; you can visit their sites to learn about some of the issues coming up in the state and federal legislatures and draw your own conclusions. One national organization that has an excellent web site explaining current mental health advocacy issues is the Bazelon Center for Mental Health Law,<http://www.bazelon.org/>. A great advocacy web site run by consumers, survivors, and ex-patients is <http://www.madnation.org/>.
In addition to information about current issues, the web sites of national membership organizations can provide links to affiliates in your area. Some examples are the National Mental Health Association (NMHA),<http://www.nmha.org/>; the National Alliance for the Mentally Ill (NAMI), <http://www.nami.org/>; and the National Depressive and Manic-Depressive Association (NDMDA), <http://www.ndmda.org/>.
You might also wish to locate your local protection and advocacy group, which each state maintains under federal law to protect the rights of mental health consumers. You can find your state affiliate through the National Association of Protection and Advocacy Systems (NAPAS), at<http://www.protectionandadvocacy.com/>. Other local resources are found in the Center for Mental Health Services State Resources Guides at <http://www.mentalhealth.org/publications>.
Some advocacy organizations also make general advocacy resources available on their web sites. In addition to our Technical Assistance Guide, Systems Advocacy, available at<http://www.mhselfhelp.org/>, many other resources can be found on the web. For example, Independent Sector, which advocates for non-profit groups generally, has an excellent guide to federal advocacy, The Nonprofit Lobbying Guide, available at <http://www.independentsector.org/>.
Action alerts and other e-mail lists
The web sites of many advocacy groups also offer possibly the most valuable advocacy resource on the Internet: action alerts. Advocacy groups often offer alerts about pending legislation, court decisions, funding decisions, and other issues affecting consumers. These alerts also generally offer advice on how to contact decision-makers and how to persuade them about the issues.
Traditionally, organizations offered action alerts by fax or phone, and thus economic restraints limited the number of people contacted. With the creation of e-mail lists for advocacy topics, organizations can reach an unlimited number of people very inexpensively. As a consumer interested in advocacy, you would be wise to sign up for as many action alert e-mail lists as you think is manageable; even if you don’t always agree with the positions put forward in the alerts, you’ll increase your awareness of the issues. You can find action alerts on the web sites of the Bazelon Center, NMHA, NAMI, and NDMDA.
As an advocate, you can benefit from joining other types of advocacy e-mail lists. An action alert can be very useful, but it sums up an organization’s position on a major issue. By joining other advocacy lists, you can read the opinions of other advocates, as well as learn about a wider variety of issues.
In some e-mail lists, only the list manager can send messages to subscribers. For example, the Clearinghouse has a mailing list (called "The Key") that we use to alert subscribers to important social issues. You can subscribe to this list at<http://www.mhselfhelp.org/>, and you can find out about our other mailing lists by contacting us at firstname.lastname@example.org <mailto:email@example.com>.
Other e-mail lists allow networks of consumer/survivor/ex-patient (CSX) advocates to communicate with each other. One example of a very busy activism e-mail list is "Act-Mad." You can join Act-Mad by sending a message to the following e-mail address:firstname.lastname@example.org <mailto:email@example.com>. For other opportunities to join more specialized mailing lists, visit <http://www.peoplewho.net> (People Who Net, a CSX-run group, offers many other Internet resources in addition to the Madness Group.)
When you follow the Act-Mad link from the Madness Group’s home page, you will also be offered the opportunity to join e-mail groups for advocates in individual states. By joining a list in your state, you can learn about the issues in your state’s legislature, as well as network with other consumer advocates in order to form coalitions.
The Clearinghouse can’t overstate the importance of these e-mail lists; we’ve helped to create electronic networks of consumer advocates nationwide. Even if you do not yet consider yourself an advocate, you can benefit from reading what others write, and you can then get involved at your own pace. The consumer movement needs your voice!
As you become more comfortable with your role as a consumer advocate, you will find that you are using these e-mail lists to provide information as much as you are to receive it. Other advocates will be grateful to hear about your involvement with state and local issues: even though laws differ from place to place, the issues are often the same, and other advocates can use the work you’ve done to protect consumers where they live.
If you’d like to become even more involved in the consumer movement, you can start your own e-mail list. If you have an idea for a specialized or localized mailing list, you can propose a new list to People Who Net, at <http://www.peoplewho.net/add>. You can also start a mailing list for free, on any topic, at <http://www.onelist.com/>.
Researching mental health issues
We’ve already discussed some of the ways to locate mental health information on the worldwide web, but it’s worth reminding you that the web is also a great place to look for information for advocacy purposes. As a consumer advocate, you are fighting a noble battle, but decision-makers also want you to have facts to back up your advocacy. Many of the general mental health web sites that are excellent recovery resources also provide information that will be helpful to your advocacy efforts.
Mental health advocacy organizations often put information supporting advocacy efforts on their web sites. For example, several independent studies have concluded that insurance parity (equal coverage for mental health services) would not raise insurance costs significantly, and national organizations have posted these studies on their web sites.
You might be surprised at the type of information that you can find to assist your advocacy efforts. For example, a news story might cover a successful effort to train police officers in responding to mental health crises. You could use such a story to bolster your efforts to institute such a program in your community. Places to search for news stories include <http://www.cnn.com/>, <http://www.nytimes.com/>, and other big-city newspapers. You can also e-mail the Clearinghouse at firstname.lastname@example.org <mailto:email@example.com> to request materials from our consumer library.
If you don’t think that you’ll have time to surf the web looking for mental health issues (not an unreasonable thought), you might want to consider trying a "clipping" service, such as <http://www.handsnet.org/>. Clipping services will search selected web sites and then e-mail you the results of their searches. Handsnet charges an annual fee, but does offer a 30-day free trial. You could try this service for a month as a way to familiarize yourself with the types of resources available on the web.
The stigma that our society places on mental illness has always been a major struggle. Stigma has shaped the treatment of mental illnesses and has resulted in treatments more akin to incarceration than rehabilitation. It has made employment and fair housing far less accessible to consumers. It has made people less willing to seek treatment, and perhaps worst of all, it has given many consumers attitudes that defeat recovery.
The modern media too often reinforces stereotypes that consumers are violent and unable to recover to lead productive lives. News programs unfailingly point out a criminal suspect’s psychiatric history whether or not it is related in any way to the crime.
For many years, consumers have organized initiatives to identify and respond to stigmatizing portrayals in the media. Access to the Internet can help you to join in this initiative; you can locate existing efforts, police the media, and contact other concerned people.
Stigma resources on the worldwide web
If you would like to help fight stigma, the consumer movement needs your help. The worldwide web is very useful for learning about stigma, as well as locating the factual information you can use to fight stigma.
Whether you are new to the consumer movement or are an experienced advocate, you can find useful background resources on the web. The Clearinghouse publication Fighting Stigma is available at <http://www.mhselfhelp.org/>, and if you’d like additional resources, you can e-mail for technical assistance at firstname.lastname@example.org <mailto:email@example.com>. The National Stigma Clearinghouse has a web site at <http://community.webtv.net/stigmanet>. Other web sites with many stigma resources include <http://mentalhelp.net/>, <http://www.nmha.org/>, and <http://www.mentalhealth.org/>.
The web also provides you with the factual information you need to respond to stigmatizing portrayals. For example, whenever a news program or editorial portrays people with mental illnesses as violent, you can respond that statistics available from the MacArthur Foundation at <http://ness.sys.virginia.edu/macarthur/> show that:
You can use the web to find other studies supporting your point about violence. You’ll also be able to search for information to support other points you’d like to make to the media.
Policing the media
The worldwide web’s "searchability" also makes it an excellent resource for locating stigmatizing incidents in the media. The same journalistic resources-like <http://www.cnn.com/> and <http://www.nytimes.com/>-that can provide great information for advocacy initiatives nonetheless should be monitored for unfair portrayals of mental illness.
Previously, stigmatizing incidents could be identified only if a concerned person happened to see or hear the portrayal, but whenever you are visiting a news site, you can spend a few moments searching for terms such as "crazy," "mental patient," "insane," and similar labels. You can also monitor entertainment sites such as <http://www.etonline.com/> and <http://entertainment.yahoo.com/>. Many advocacy groups report incidents of stigma on their web sites, including <http://www.nmha.org/> and <http://www.nami.org/>.
The Internet also helps you after you discover an example of stigma in the media, whether by web search or traditional methods. You can use e-mail networks to report the incident to other advocates, as well as anyone you know who might share your intolerance for stigma. You can also use e-mail to communicate incidents to national advocacy organizations such as the NMHA. National advocacy groups can use their advocacy expertise to contact the offending party, and can also widely disseminate reports of the incident.
Some people would argue that policing the media is akin to censorship, but that argument fails. Censorship is government suppression of free speech. What you are doing is exercising your right to free speech: when a media organization spreads misinformation about consumers, you are exercising your civil rights by responding and trying to educate the public about the truth.
Starting a Self-Help/Advocacy Group
For many years, the Clearinghouse has provided technical assistance to individual consumers interested in starting support and advocacy groups in their communities. The Internet has facilitated our technical assistance, which we routinely provide through our web site, <http://www.mhselfhelp.org/> and by e-mail, firstname.lastname@example.org <mailto:email@example.com>. More importantly, the Internet can greatly simplify and improve the process of starting a self-help group.
If you’d like to know a little more about the basics of starting a self-help group, you should look at our technical assistance publication, How to Start a Self-Help/Advocacy Group, at <http://www.mhselfhelp.org/>. You might also wish to contact the Clearinghouse for a copy of our Nuts and Bolts Technical Assistance Guide, which provides even greater detail. Here, we’ll discuss how the Internet simplifies the steps of creating a self-help/advocacy group in your community.
Before you begin work on starting your own self-help/advocacy group in your community, you should find out whether your community already has any such groups. You might be surprised at the answer: traditionally consumer-run groups have not had the resources to publicize their activities as much as they’d like.
The Internet can greatly simplify your search for self-help groups in your area. You can e-mail us at the Clearinghouse, firstname.lastname@example.org <mailto:email@example.com>, for access to information about consumer-run groups and services nationwide. You can also use the web to locate groups in online databases maintained by the American Self-Help Clearinghouse, <http://mentalhelp.net/selfhelp>, and the Center for Mental Health Services, <http://www.mentalhealth.org/databases>.
If your background research locates existing self-help groups in the community, you should look into these groups. Do they represent your needs? Could you establish a program with their help? You should not let your motivation and enthusiasm be lowered by the existence of self-help groups; rather, you should use this as motivation to help establish more services, whether in conjunction with existing groups or on your own. You might wish to consult our Technical Assistance Guide, Nuts and Bolts, for further guidance on affiliating with existing organizations.
Existing self-help groups, even those not designed specifically for mental health consumers, can be an excellent source for answering some of the logistical questions involved in starting a self-help group. For example, when you’re searching for a meeting place, you might ask the local Alcoholics Anonymous group where they meet. Other self-help groups are usually helpful, but if you don’t find this to be the case, you can use the web to locate community resources on your own.
Your web search for a meeting place will differ depending on the size of your community. In a large metropolitan area, your local government might maintain a list of community meeting places, and there might even be a web network of local nonprofit groups. In a smaller area, you can use the online yellow pages at <http://www.yahoo.com/> to search for churches and community centers and contact them to find out whether they offer meeting space. You’ll find these resources will continue to be helpful as your group grows and expands its activities.
Publicizing your meetings
The Internet should be viewed not as a way to publicize your meetings, but as a way to provide additional publicity. You should rely primarily on traditional methods such as placing notices in newspapers’ community listings, and getting permission to post flyers in community mental health centers, doctors’ offices, churches, unemployment offices, laundromats, etc. The Clearinghouse’s other technical assistance guides provide more detailed publicity suggestions.
Obviously, the more people that you interest in your self-help group, the more successful it will be, and the Internet should be used as a tool to attract as many additional people as possible. If your local newspaper has a community bulletin board on its web site, make sure that it includes your meetings. If you participate in any online chats, newsgroups, or message boards that you think have a following in your local community, you should consider communicating about your project. You should explain why you think it’s important for consumers to start self-help groups and end with an announcement of your meeting; that way the message will have general interest to those who don’t live near you.
E-mail is an inexpensive way of publicizing your meetings, but of course this assumes that you have the e-mail addresses of people who might be interested in participating. You might consider using an e-mail list to publicize your meeting, but it is probably better to communicate with the list’s manager before announcing a meeting. You can usually find out how to communicate with a list’s manager on the same web site that explains how to subscribe to the list.
Consumer-run drop-in centers and other ongoing projects
As you become more involved in the consumer movement, you might be the type of person who organizes projects that are more involved than your basic support group. As your projects become more ambitious, the Internet will become even more helpful to you.
Perhaps the best example of an ongoing consumer-run project is a drop-in center, which provides a supportive environment for consumers and is especially valuable on evenings and weekends, when other community services might not be available. Drop-in centers offer a wide range of activities, from support meetings and fun get-togethers to job training and advocacy workshops. A more complete picture is provided in the Clearinghouse guide Consumer-Run Drop-In Centers at <http://www.mhselfhelp.org/>. If you are serious about starting a drop-in center, it would be a good idea to contact the Clearinghouse personally at firstname.lastname@example.org <mailto:email@example.com> for more in-depth technical assistance.
However, drop-in centers are only one of the many types of full-time organizations that consumers have been organizing in recent years. Another great example is the clubhouse, which operates on a membership model and provides employment and housing services
to its members. (To find out more about clubhouses, contact the Clearinghouse or check out <http://www.iccd.org/>.) There is no end to the types of consumer-run services that are possible, including crisis response programs, peer case management, and any of a wide variety of small businesses.
Here, we’ll discuss how the Internet makes it easier for consumer groups to start and operate drop-in centers and other peer-run services. Operating such a program is a valuable and rewarding experience, but also a very complicated process. In addition to the considerations for starting a "part-time" self-help group, a group wishing to start a more ambitious project must think about securing ongoing funding, promoting activities, and dealing with business considerations.
Obtaining funding is a significant challenge for any group wishing to start a drop-in center or other ongoing consumer-run project. Traditionally, this could be subdivided into two challenges: first locating money that is available, and then successfully competing for that money.
The Internet greatly simplifies the first of the challenges by making it much easier for you to find sources of funding. It still requires a lot of hard work, but the search capabilities of the worldwide web, together with some great existing resources, make the job easier.
You might wish to start out by going to <http://www.fundsnetservices.com/>. Using this web site, you can locate grantmakers operating in your state. You can then follow links to individual organizations. Other sites with links to funding sources include <http://www.granted.org/>, <http://www.tgci.com/>, <http://fdncenter.org/>, and <http://www.findit.org/>.
Using these index sites and traditional search engines, you should be able to find a great number of funding opportunities, but you still must face the second challenge of securing the funding that is available. The Clearinghouse offers a Technical Assistance Guide, The Art and Science of Writing Grant Proposals That Win, which you can request by contacting us. You can also locate general grant-writing information online at web sites such as <http://www.findit.org/>, <http://fdncenter.org/>, and by searching for "writing grant proposals" on search engines like <http://www.yahoo.com/> or <http://www.hotbot.com/>.
As with starting any consumer-run group, the Internet should be considered as an adjunct to other means of publicity. In addition to the methods we’ve already discussed, your ongoing organization might want to consider using e-mail lists and a web site to publicize its activities.
E-mail is an excellent way to publicize activities, but it relies on having access to the addresses of interested parties. From the beginnings of your organization, you should maintain a list of contacts in whatever means possible, and you should always collect e-mail addresses. E-mail may not be the best way to get people’s attention, but if you’re already on the Internet, then e-mail is the cheapest way to reach people.
If you’re just starting out and only have a few people interested in your organization, you can manually send e-mails to everyone, or create a group list within your e-mail program. As your organization grows, you might consider creating automated e-mail lists through a service such as <http://www.onelist.com/>.
If you are going to use e-mails to publicize your activities, remember some general courtesy. People tend to receive a lot of e-mails, so you should try to keep your message brief and to the point. Also, provide as much contact information as possible, in case your recipients share the message with people not connected to the Internet.
As your organization grows, you might also consider establishing a web site to publicize your activities. Building a presence on the web involves three steps: (1) creating and maintaining your site, (2) finding a host for your site, and (3) publicizing the site itself.
Describing how to create your own web site is beyond the scope of this Guide, but there are many free resources available on the web. You can start with tutorials offered by the Library of Congress, <http://lcweb.loc.gov/global/html.html>, or the Worldwide Web Consortium, <http://www.w3.org/>. Also, searching for "web tutorial" on a search engine will produce hundreds of hits.
If you are planning to put up a simple web site, then you should have no problem locating a place that will host your site for free (probably in exchange for putting ads on your pages). In fact, you or another organization member might be able to obtain free server space for the web site from your personal ISP. Another option is to search for free web site services such as <http://www.fsn.net/>.
Publicizing your site takes hard work, but the work will pay off as more people visit. Begin with the obvious: everything you send out should contain your web site’s address, including e-mail, posts to newsgroups, flyers, press releases, faxes, and so on. Another way to generate publicity is to participate in link exchanges. Go to other mental health web sites and follow the link allowing you to e-mail the site’s webmaster. Offer to establish a link to the other site and ask if your site’s address could be included in the other site. Contact as many sites listing mental health groups as possible.
Running a drop-in center or other ongoing "full-time" organization is in many ways like running a business. You’ll probably find that issues such as budgeting, staffing, insurance, and maintenance divert your attention from your primary purpose of helping consumers.
Fortunately, the Internet is an excellent way to find solutions to some of your everyday operational concerns. For example, you might be able to find volunteer or reduced-rate legal services through your local bar association, which you can locate through the American Bar Association (ABA), <http://www.abanet.org/>. Similarly, you can visit the web site of the Public Interest section of the American Accounting Association (AAA) at <http://www.rutgers.edu/Accounting>.
General nonprofit service groups are another resource for locating advice and assistance for running your group. Some of these sites that we’ve already discussed include <http://fdncenter.org/>, <http://www.findit.org/>, <http://www.unitedway.org/websites>, and <http://www.independentsector.org/>.
This Technical Assistance Guide has provided enough information for you to get started using the Internet to help yourself and advance the consumer movement, and we’ve certainly provided enough information to keep you busy for a while! All of the web sites we’ve discussed are contained in this directory of resources, and you can use these web sites to locate e-mail lists, newsgroups, message boards, and chat rooms. If you have any questions, please contact the Clearinghouse at firstname.lastname@example.org <mailto:email@example.com> for further technical assistance. Good luck!
Mental Health/General Health
Mental Health Net
Internet Mental Health
National Mental Health Organizations
National Mental Health Consumers’ Self-Help Clearinghouse
Bazelon Center for Mental Health Law
People Who Net
The Madness Group
National Stigma Clearinghouse
National Mental Health Association
National Alliance for the Mentally Ill
National Depressive and Manic Depressive Association
International Center for Clubhouse Development
MacArthur Research Network on Mental Health and the Law
National Association of State Mental Health Program Directors
National Association of Protection and Advocacy Systems
Knowledge Exchange Network
(Center for Mental Health Services)
Library of Congress
(National Library of Medicine)
Thomas: Legislative Information on the Internet
(Library of Congress)
The White House
U.S. House of Representatives
Health Care Financing Administration
President’s Committee on Employment of People with Disabilities
Other useful sources of information
Cable News Network
New York Times
U.S. News and World Report
American Bar Association
Administrators in Medicine
American Medical Association
American Self-Help Clearinghouse
Community Resource Institute
The Grantsmanship Center
The Foundation Center
Library of Congress Web Site Tutorial
Worldwide Web Consortium
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