Advocacy
Having a child with special health care needs means 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 are expected to make critical decisions regarding the care and safety of a loved one in spite of often having limited resources, knowledge and finances. Parents and health care providers, working together, can play an important role in helping to expand opportunities and enhance the quality of life for children with special health care needs.
The Center for Infants and Children with Special Needs at Cincinnati Children's Hospital Medical Center provides this comprehensive resource guide and advocacy tool to help parents and health care professionals learn the skills needed to become informed, strong advocates.
Becoming an Advocate | Find Your Legislators |
New and Pending Legislation | Write Your Legislator |
Key Laws | Where to Find Help | Local Media | Additional Resources
Find additional information about advocacy resources in Kentucky and Indiana.
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 parents and health care providers become effective advocates.
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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 Ohio, Kentucky and Indiana Legislature as well as your representatives in Congress. As consumers and voters, family opinions and concerns have great influence with politicians and program directors.
State Legislators
- 127th Ohio General Assembly helps you locate your Ohio State Legislators by allowing you to search by zip code or name. After you identify your legislators, you can then email your Senate and House Representatives directly from this web site.
- The Kentucky Legislature helps you identify your Kentucky State Legislators by county and district. After you identify your legislators, you can then email them directly from this web site.
- Access Indiana helps you find your Indiana State Legislators by zip code. After you identify your legislators, you can then email them directly from this web site.
- USA.gov provides access to all state government web sites for comprehensive information on representatives and state agencies.
Federal Legislators
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New and Pending Legislation
Keep current on new and pending legislation which can affect you and your child with special needs. Your input is important and can make a difference.
State Legislation
Federal Legislation
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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 Ohio provides information on effective letter writing techniques.
- Project Vote Smart has information on the voting records and positions of federal legislators.
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Key Laws
The more you learn about your rights, the stronger you will be as an advocate for your child with special needs. Learn about some of the important laws that affect you and your child.
- 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 504 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.
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Where to Find Help
Sometimes you need more personalized help in advocating for your child. There are local and state resources that can work with you to find information, plan strategies, and often become your advocate at meetings to assist you with your unique questions and problems.
- The Arc of Ohio provides statewide legislative advocacy, information and resources. There are local chapters in Hamilton County, Butler County and Warren County which offer advocacy services, training, support groups, information and referral for families.
- Autism Society of Greater Cincinnati provides information, meetings and support groups.
- Child Advocacy Services at Memorial provides information, support and local advocacy services to parents of children with special education needs. Call 513-621-3032 for more information.
- Children and Adults with Attention-Deficit / Hyperactivity Disorder (CHADD) is a national nonprofit organization provides resources and encouragement to parents, educators and professionals dealing with children and / or adults with ADHD. CHADD of Suburban Cincinnati can provide additional local resources. You can also find other chapters in your area.
- The Legal Aid Society of Greater Cincinnati offers assistance with identifying programs for which an individual may qualify and with the application process. They can also help when an insurer or government program will not cover a needed medical service.
- Ohio Coalition for the Education of Children with Disabilities (OCECD) is the regional parent center dedicated to advancing the educational interests of children with disabilities. They provide advocacy services, workshops, information and referral.
- Ohio Department of Mental Retardation and Developmental Disabilities, often known as MR/DD, provides a variety of comprehensive services to eligible children and families in Ohio. There are local boards in Butler County, Clermont County, Hamilton County and Warren County that offer individual help for eligible individuals.
- Ohio Legal Rights Service is an independent state agency that provides protection, advocacy and assistance for children and adults with disabilities in Ohio.
- Hamilton County Educational Service Center (HCESC) provides information, support and training. A directory of HCESC offices in other areas in Ohio is available.
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Local Media
- Howard Ain serves as the Channel 12 News Troubleshooter. If you have a problem or complaint, you can email him from the Troubleshooter web site.
- Target 5 Investigates at WLWT, Channel 5, can help solve problems. You can email the team.
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Additional Resources
Many organizations have information, strategies and web site links to useful resources that can help you advocate for your child.
- American Academy of Developmental Medicine and Dentistry is an organization committed to improving the overall quality of health care provided to persons with mental retardation and developmental disabilities.
- American Academy of Pediatrics has current information on important pending legislation on vital children's health issues, advocacy and medical-legal partnerships.
- 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 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.
- Children's Defense Fund of Ohio 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.
- Coping.org offers practical information on parental advocacy and coping strategies.
- Down Syndrome Association of Greater Cincinnati offers resources and information about advocacy.
- FamiliesUSA has resources to assist advocates and information on health care issues.
- State updates provides state-specific information on benefits, programs and expanded coverage
- Tools for Advocates has useful programs, guides and advocacy tips.
- Family Service Council of Ohio serves as an advocate and spokesperson for state and local policies and services affecting families in Ohio.
- 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 National Alliance for the Mentally Ill (NAMI) - Ohio is a nonprofit, grassroots, self-help, support and advocacy organization for people with severe mental illness. The Advocator will keep you updated on important issues and legislation.
- 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 Dissemination Center for Children with Disabilities (NICHCY) provides information on state agencies, legislative representatives, organizations and programs serving children and youth with disabilities.
- Ohio Association for Child Caring Agencies (OACCA) is designed to support member agencies in making sure that high-quality child care services are available for Ohio's children.
- Ohio Association for the Education of Young Children promotes and improves the accessibility, availability and quality of early care and education programs and services for all children, ages birth to 8, their families and the professionals who support them.
- Ohio Child Care Resource and Referral Association (OCCRRA) promotes the development, maintenance and expansion of quality child care resource and referral services in Ohio. They also advocate for affordable, available, quality child care.
- Ohio Children's Hospital Association provides information on current children's health issues, as well as links to child advocacy and child health resources.
- The Ohio Developmental Disabilities Council is a planning and advocacy body committed to community inclusion for people with developmental disabilities.
- Ohio Family and Children First is a partnership of government agencies and community organizations committed to improving the well-being of children and families.
- Ohio Statewide Independent Living Council works to expand independent living services and options for Ohio residents 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.
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If your questions are not fully answered by our Special Needs Resource Directory, or if you have ideas for other helpful resources, please contact us via email.
Rev. 8/08
