Having a family member, child or friend with special health care needs can mean becoming his / her voice. Advocacy means providing your expertise and experience in support of an issue or need on behalf of yourself or others. Following a devastating injury or debilitating illness, families and individuals are expected to make critical decisions regarding the care and safety of a loved one or themselves in spite of often having limited resources, knowledge, and finances. Families, friends, and health care providers, working together, can play an important role in helping to expand opportunities and enhance the quality of life for adults and children with special health care needs.
 

Health Care Reform in the News

 
Health organizations often provide current information on disability information, health policies, useful statistics and news items of special interest.
 

• American Academy of Pediatrics has current information on health care reform issues.
   
• Commonwealth Fund has articles on health reform and other health care issues in the news.
   
• Disability World is an online magazine reporting current international disability news.
   
• Health Care Reform in 2009 is a comprehensive series of articles from FamiliesUSA.
   
• Kaiser Family Foundation provides current and reliable information on national health issues to policymakers, the media, and the general public.
   
• Pew Research Center provides current information, research, and data on issues and trends in health care.
   
• Robert Wood Johnson Foundation has current reports and grant funding opportunities supporting health care reform.
   
• I'm Dreaming of a White Paper provides links to health reform policy papers.
   
• The Future of Children, a collaboration between Princeton University and the Brookings Institution, publishes research reports, newsletters, and resources on a variety of issues related to children, including health and education.
   
• Understanding Health Care Reform is an information series from Time Magazine that reviews current health care options and how you might be affected. A glossary of terms describing health care plans is also included.
   

Becoming an Advocate

 
Advocates can work on behalf of promoting global issues such as state and federal health care programs. They can also play a critical role in individual patient- / family-focused issues including insurance, school, and access to resources. There are many resources to help families, individuals, and health care providers become effective advocates.
 

• FamiliesUSA provides advocacy and media tips.
   
• Family Voices has information and resources on becoming an advocate for your child with special needs.
   
• National Center of Medical Home Initiatives has information on advocacy for parents and health care professionals.
   
• National Organization on Disability provides information on becoming an advocate.
   
• Partners in Policymaking is an online self-study course designed to help people with developmental disabilities and their families create positive change through advocacy.

Find Your Legislators

 
One way to have your voice heard is to contact your state or federal legislator. Representatives want to know opinions on upcoming issues and legislation in order to serve their districts effectively. The following resources can help you determine your representatives in the State Legislature as well as your representatives in Congress. As consumers and voters, family opinions and concerns have great influence with politicians and program directors.
 

• USA.gov provides access to all state government web sites for comprehensive information on representatives and state agencies. Federal Legislators.
   
• United States House of Representatives helps you locate your state Representative(s). You can email your Representative directly from this web site.
   
• United States Senate helps you locate your state Senator(s) by allowing you to search by state. You can email your Senator directly from this web site.
   

New and Pending Legislation

 
News concerning state legislatures and state governments often receives little coverage. You can keep current on what is happening in the nation's state capitols that may affect you and your child with special needs. Your input is important and can make a difference:
 

• Governing Magazine: Today's News compiles government news from state and local officials.
   
• Grasscatcher, from the National conference of State Legislatures, highlights key policy news clippings from the nation's state legislatures.
   
• Stateline, a project funded by the Pew Center on the States, highlights headlines on state government news stories as well as a state news roundup featuring top stories from around the country.
   
• U.S. Senate allows you to search current legislation by subject area as well as information about the legislative process.
   
• U.S. House of Representatives, Office of the Clerk provides information on current legislation.
   
• THOMAS provides comprehensive information on new and pending legislation in Congress. You can search by bill number or subject area. You can also learn about the legislative process.
   
• Congress.org can alert you to issues and provide updates on pending bills.

Write Your Legislator

 
Writing to your representatives is an important way of letting them know your opinions about pending legislation. Letters and emails to your representatives can be vital in influencing how they vote.
 

• Congress.org has actual letters that have been received by legislators which can help you with ideas when you write your own.
   
• The League of Women Voters provides information on using the correct address, salutation, and closing for a letter.
   
• NAMI provides information on effective letter writing techniques.
   
• Project Vote Smart has information on the voting records and positions of federal legislators.

Key Laws

 
The more you learn about your rights, the stronger you will be as an advocate for yourself, family member or friend with special needs. Learn about some of the important laws that affect you and your loved one.
 

• Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities in employment, state and local government activities, public accommodations, public transportation, telecommunications and public services.
   
• The Individuals with Disabilities Education Improvement Act (IDEA) is a federal law that requires that children who qualify for special education services receive a free appropriate public education regardless of the severity of their disability.
   
• No Child Left Behind Act is a federal law that makes sure that all children, including children with disabilities, receive a high quality education.
   
• Section 104 of the Rehabilitation Act is a civil rights law that prohibits discrimination because of a disability. It covers a wide range of children with disabilities who may be eligible for special education and supportive services in order to receive a free appropriate public education.

Where to Find Help

 
Sometimes you need more personalized help in advocating for your loved one or yourself. There are local and state resources that can work with you to find information and plan strategies; often, they will become your advocate at meetings to assist you with your unique questions and problems.
 

Additional Resources

 
Many organizations have information, strategies, and web site links to useful resources that can help you advocate for your loved one or yourself.
 

• The American Association of People with Disabilities (AAPD) works to improve the lives and increase the opportunities for people with disabilities.
   
• Association of Maternal & Child Health Programs (AMCHP) works to improve the health of families including those with children and youth with special health care needs. Their Legislative Center reports on new and proposed changes to laws that can affect family health and often provides sample letters to send to legislators.
   
• Child Trends is the nation’s only independent research and policy center focused exclusively on improving outcomes for children. Their topics include education, poverty, immigration, health, child development, and child welfare.
   
• Children's Defense Fund serves as an advocacy group to provide education on the needs of poor and minority children as well as those who are disabled. Their goal is to encourage preventive services. They have offices in several states.
   
• State updates provides state-specific information on benefits, programs, and expanded coverage.
   
• Tools for Advocates has useful programs, guides, and advocacy tips.
   
• Family Voices advocates for the inclusion of a set of basic principles in every health care reform proposal and provides parents with information about how to advocate for their child's needs within the health care system.
   
• The Gallup-Healthways Well-Being Index™ has been developed to provide the official measure for health and well-being. Over the next 25 years, the Well-Being Index will collect and measure the daily pulse of the nation's well-being and recommend solutions for a better way of life.
   
• National Association of Children's Hospitals and Related Institutions (NACHRI) provides information on national children's health issues and advocacy and has a special section for parents.
   
• National Council on Disability has information on what's new in legislation and policies affecting people with disabilities. They also publish the monthly news Bulletin highlighting the latest issues.
   
• National Disemination Center for Children with Disabilities (NICHCY) provides contact information on State Resources, laws, organizations, and programs serving children and youth with disabilities.
   
• Wrightslaw has current information about special education laws. Their News and Alerts page tells about proposed changes to laws affecting children with special needs. They also have tips on writing letters.