Guide to Legislative and Public Policy Websites

for Families of Children with Special Health Care Needs/Disabilities

Getting Involved in the Legislative Process

About this Guide / How Can We Participate? / Listservs / Your Elected Representatives

The Guide to Legislative and Public Policy Websites

This website is meant to provide families, professionals and the community with resources to navigate the maze of legislation that governs the delivery of services to children with special health care needs/disabilities. It is divided into four sections:

How Can Families, Professionals and the Community Participate in the Legislative Process?

There are many laws that affect children with special health care needs/disabilities and their families. It can be difficult to find out what those laws are, what kinds of rights they ensure, who is eligible for protection under them and which agencies are responsible for enforcing which laws.

Laws change. They are updated, re-authorized, rescinded. The services that these laws are meant to deliver are sometimes affected by federal, state and local budgets. Trying to keep up with these changes can be overwhelming. Because things can change quickly, the internet is an ideal place to track current legislative action.

Despite the demands of daily life, many families welcome the opportunity to speak out on issues that concern themselves and their children. What are some of the actions that families, professionals and the community can take to let their voices be heard?

• Keep informed. Join a listserv, sign up to receive email or fax alerts, visit websites that provide information on upcoming legislation and action.
• Write letters to your federal and state legislators, to the governor, to the president. You can find out who your elected officials are on a federal, state and local level by visiting Congress.org. Fill in your zip code and you'll be connected!
• Make telephone calls expressing your opinions -- call your elected representatives and let them know how you feel.
• Visit your legislators in their home offices. This is best done during congressional recess periods. (Recess periods for the 2nd session of the 109th Congress in 2006 have not yet been published.)
• Adopt a legislator. Pick a state or federal legislator, visit him/her, send letters and photos, and keep in touch on a regular basis.
• Register to vote and VOTE! Check out the Easy Voter Guide online. It provides information about federal and state elections and issues.
• Join an advocacy group.
• Participate in a rally.
• Join a Board; get involved in the day-to-day workings of a disability advocacy group.
• Respond to editorials in the newspaper.

Listservs to Join

The following are some listservs you can sign up for and receive updates and alerts about issues of interest and concern.

• Support for Families of Children with Disabilities (SFCD) listserv
  SFCD sends out news and alerts on issues that concern families of children with special health care needs/disabilities in San Francisco -- You can join by visiting SFCD's website at http://www.supportforfamilies.org and entering your email address in the box indicated.
• Family Voices listserv
  Family Voices of California's listserv focuses on news and information relating to children with special health care needs in the state of California. -- You can join the listserv for Family Voices of California by sending an email to: FVCAFamAdv-subscribe@yahoogroups.com. You do not need to fill in anything on the Subject line or in the body of the message. Just send the email and you will be put on the list.
• There are more listservs that you can join. Explore some of the websites listed in this on-line Guide and find those listservs that address your particular concerns.

About this Website

The listings included here are not comprehensive or exhaustive. Instead this site is meant to be a selective compilation of internet resources considered to be of value to families of children with disabilities seeking information. Although there are many websites not included here, that does not reflect their worth or value, only the limited time and resources of the compiler. If you know of any resources that we have overlooked or would like to offer comments or sugestions, please contact us.

The resources on these pages are for your information. These listings are not necessarily comprehensive, nor are they an endorsement. If you find that any information is incorrect, if you would like to offer feedback or if you know of additional resources that may be helpful to include, please contact us.

This page was last updated: October 29, 2009