Magazine article The Exceptional Parent

Grass Roots in Cyberspace

Magazine article The Exceptional Parent

Grass Roots in Cyberspace

Article excerpt

The Internet serves as a launching pad for advocacy

After years of struggling to pay the medical bills associated with their older son's disability, the Crownover family of Lafayette, Louisiana, were looking forward to the implementation of a new state Medicaid program that did not consider parental income in determining eligibility. Less than one month before this program was to come into effect, the legislature announced that it would be cut because of a budget shortfall. Not only the Crownovers, but hundreds of families from around Louisiana were in a state of shock--but not for long. The state had managed to touch the nerve of a very persistent, well-organized, and dedicated group called LaCAN, Louisiana Citizens for Action Now. Advocating for community and family supports for people with severe disabilities, this group was no stranger to struggles with the government. Out of these straggles, however, came some success stories. TEFRA (Tax Equity Fiscal Responsibility Act), better known as the Katie Beckett Amendment, was the program legislators had promised since 1995, and were now willing to eliminate.

Takin' it to the 'Net

Folks at LaCAN began their advocacy efforts the same day the announcement to cut the program was made. Luckily, they had many strategies that they could dust off and quickly put in place, such as a telephone "tree" (where one person calls two people and they call two people, etc.) and rallies, which were used in previous lobbying efforts. A welcome addition to their strategies this time, though, would be the World Wide Web. Karen Higginbotham, the parent of Alison, a 12-year-old girl with disabilities, called upon creative juices that she never dreamed she had and built the LaCAN Web site, She had been learning Web site design for a year, and now she volunteered to use her newly acquired skill as a way to get the message out to people.

How does the Web site help? The greatest advantage of the Web site is its capability to provide information quickly. LaCAN leaders can respond and/or react to updates within a very short period of time. The Web site also eliminates some of the costs of mailing out newsletters and telephoning people (often long distance), though these methods are still used as not everyone has access to a computer.

Another benefit of a Web site is the immense quantity of information that can be posted there. Advocates can quickly become knowledgeable so that they can then go out and spread the message. The information is not only available to existing advocates, but has the potential of attracting others who visit the site to join in the effort. The Statewide Coordinator of LaCAN, Kay Marcel, keeps abreast of what is happening in the legislature, posts updates to keep readers informed of the latest events, calls people to action to write letters to legislators and attend committee meetings, and provides needed encouragement. These updates provide great opportunities for brainstorming. One such session yielded an idea that won much-needed public attention for LaCAN.

Early in January, Kay noted that the Governor's inauguration would be coming up. This gave one parent the idea for the group to wear their green T-shirts and buttons and hold a rally at the event. The media would be there and LaCAN might have an opportunity to get some needed coverage. The idea sparked a plan that took only a few hours to put in place and email out. Forty to sixty people from throughout the state participated in the rally and caught the attention of the media, legislators, and also Governor Mike Foster. As a result, the Governor paused in his inaugural address to speak to the parents and promised to do what he could for the TEFRA cause.

Another valuable strategy is the Web site guest book. People visiting the Web site are encouraged to make comments on the issue of TEFRA in the "Guest Book." These entries are then sent to state leaders on a monthly basis in order to demonstrate the amount of support the program has gotten from citizens. …

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