Your Organization's Functions

A lay advocacy group can have a variety of functions, from an informal network in which parents give each other moral support to a sophisticated formal organization, which uses media outlets, government agencies, legislative access, and research access to create a complete range of improvements for its target population.

The lay advocacy group has functions in four major areas:

• Family: A lay advocacy group almost always has family support at the center of its mission. First and foremost, these groups are founded to speed information on its way to the people who use it, by create a network for sharing. This may be clinical information or the peer support of being able to reassure a parent with a newly diagnosed child that she is not alone.
• Public: Lay advocacy groups can provide a public face for a condition that may be poorly understood. Through careful use of media outlets and educational material, lay advocacy groups can increase awareness of special needs, get "out there" to reach potential new members, and help enhance the quality of members lives by relating their needs to other issues in the public eye.
• Providers/Researchers: Lay advocacy groups can improve medical care by helping providers understand the day-to-day realities of a condition and the actual needs of affected families. They can serve as a central resource for the entire spectrum of the disorder and a referral center for specialists They can also provide researchers with access to affected individuals and their families while providing a measure of protection for the participants.
• Government: Lay advocacy groups can take a role in health care policy by helping members understand initiatives that are being proposed, proposing initiatives themselves, and mobilizing action where public comment is called for. They can also work with government agencies, such as Maternal and Child Health and the National Institutes of Health, to ensure that their members needs are being served.

These functions can be grouped into three action areas:

• Support for individuals and families
• Education of organization members, professionals, and the public
• Research advocacy
• Legislative and policy advocacy

» Support for Individuals and Families