What You Can Do

The goal of the Association of Independent Craniofacial Advocates (AICA) is to let our elected officials know about pending legislation, request their support of those bills, and educate the general public about craniofacial conditions and issues.

Many individuals understand the importance of advocacy, but are not sure how they can participate in the grassroots effort. Here are the steps you can take to further the mission of the AICA:

Support Pending Legislation

1. Commit - Make the decision to join us in our advocacy efforts.
2. Investigate - Familiarize yourself with pending state and federal legislation. Are your elected officials already on the co-sponsor list(s)?
3. Fact-gather - Use the search links on our main page to find contact information for your state and federal elected officials.
4. Contact and Inform - Use our sample letter templates to send a letter, fax or e-mail to your elected officials. You may prefer to contact them by telephone. Request their support, or thank them for their support if they are already on the co-sponsor list.
5. Follow-up - Call or write the offices of the officials you have contacted to reiterate your request, thank them for their support, and/or make an appointment to visit them or their legislative assistant to discuss the issues.
6. Spread the word - Forward a link to this website to anyone interested in craniofacial issues.

Introduce State Legislation

1. Commit - Make the decision to join us in our advocacy efforts.
2. Investigate - Familiarize yourself with the verbiage of existing state laws to decide how you might fashion a similar bill for your state.
3. Fact-gather - Use the search links on our main page to find contact information for your state elected officials.
4. Contact and Inform - Write or call your elected officials to let them know the need for such legislation in your state. Include your personal experience. Provide the links to or verbiage of other states' mandates as samples of preferred verbiage.
5. Request - Ask if they are interested in introducing such legislation. Schedule a meeting to discuss needs and expectations.
6. Follow-up - Work with your elected officials to develop a comprehensive bill for introduction in your state legislature.
7. Spread the word - Contact other individuals and families in your state, encouraging them to write their elected officials requesting their support of the newly-introduced legislation.

Public Awareness and the Media

1. Commit - Make the decision to join us in our advocacy efforts.
2. Decide - Will you pursue a feature story in your local venue, or submit a press release regarding pending legislation?
3. Contact and Inform - Use the search links on our main page to find contact information for national/local media outlets. Current press releases regarding pending legislation will be available at this website for distribution. Some pieces may allow for inclusion of your personal story (one paragraph only, please).
4. Follow-up - After mailing, faxing or e-mailing a press release, contact media outlets to make sure they have received the information. Ask when the story will run and if they would like to interview you or someone else regarding the information.
5. Spread the word - Contact other individuals and families in your state, encouraging them to write contact the media with the prepared press release(s) or feature story ideas.

Need help? Contact aica-advocates@cox.net for assistance interfacing with your elected officials or the media.

Regards,


Debbie Oliver
Association of Independent Craniofacial Advocates (AICA)
aica-advocates@cox.net

Pending Legislation - Pennsylvania

The Association of Independent Craniofacial Advocates (AICA) has become aware of possible pending legislation in the state of Pennsylvania regarding orthodontic treatment for persons with cleft lip and/or palate.

We are awaiting word from Representative Nicholas Micozzie's office (Republican - Delaware County) as to whether they will introduce a bill and in what timeframe. A request was made to them by a constituent that remains un-named to us.

We would like to persuade Micozzie to introduce a bill that will focus not only on orthodontic treatment, but will encompass all medically-necessary treatment for craniofacial patients.

Present members of the PA advocacy team are:

Jason and Missy Fry
Cat Potter
Robin Siversten
Debbie Oliver
Michele ________

Let us know if you are interested in the grassroots efforts in PA by sending an e-mail to mailto:aica@cox.net Please include your name and district.

Join The AICA!

• If you have ever wanted more information on state and federal legislation regarding the treatment of craniofacial anomalies...
• If you have ever had to battle an insurance or managed care company...
• If you have ever wondered what you can do to make a difference...

Please join us!

Send your name and contact information, including your city and state, to aica-advocates@cox.net. so we can list you as an AICA member. There are no fees or dues! Then check this website often for developments and information on how you can help us help the thousands of craniofacial patients around the country who need adequate healthcare coverage from their insurers and HMOs.

Welcome!

Questions are often raised as to what exactly a non-profit organization or its leaders and members can do when it comes to advocacy and political action. There are strict guidelines for 501(c)3 tax-exempt organizations as to how much time and money can be spent on these sorts of activities.

An organization's charitable status can be called into question if these activities are seen to be excessive, outside the boundaries of tax regulations, and/or not in line with the mission of the organization.
(See Lobbying By Nonprofits here.)

As private citizens, however, there is no limit on our participation!

The AICA is not an incorporated entity; it is neither a private foundation nor a public charity. We are individuals and families working diligently with our elected officials to pass comprehensive legislation forcing insurance and managed care companies to cover medically-necessary care for those with craniofacial birth anomalies and facial differences caused by trauma, illness and disease.

Our purpose is to share ideas and information, interface with elected officials, increase the general public's understanding of craniofacial issues, and demonstrate the overall strength of the craniofacial community - socially, emotionally and politically.

Whether you are willing to do a little legwork or a lot to help pass this type of legislation, AICA will provide as much assistance and information as possible to assist you during that process. Let us know what you have to offer, so we can share that with other independent advocates across the country.

If you are in need of assistance in your battle with an insurance or managed care company, please visit the Insurance page at the cleftAdvocate website for further information.

Looking forward to working with you!

Debbie Oliver
aica-advocates@cox.net