Special Needs Resource Directory

  • Health Insurance, Healthcare Reform

    Health insurance benefits are often confusing to read and difficult to appeal, especially for a family with a child with special healthcare needs. Health insurance terms such as "medical necessity" and "skilled nursing" are difficult to understand and may be interpreted differently by each insurer. Families often lack the expertise, experience and clout to successfully deal with insurance issues and this can add significant emotional and financial stress.

    Ask to see your entire policy online or in print. This detailed document often provides information that better explains and occasionally contradicts what you thought was covered.  Medications are often covered by a separate policy and the covered medications and copay may change during your coverage.  Most policies cover all medications used in the hospital or emergency room as part of your medical coverage.  However, medications prescribed for you as an outpatient are controlled by the “pharmacy” part of your policy and thus a medication that was fully covered and working well in the hospital may not continue to be covered or have a high copay once you are discharged. You can ask your physician to submit all medications and other treatments such as therapies to your insurance company prior to discharge so that you know what is covered or how much your total “out of pocket” cost will be.

    Your physician, social worker, discharge coordinator, and hospital financial aid office can assist you in this process. Their knowledge can be extremely useful but sometimes you have to personally seek their assistance.

    Information included throughout our directory can help you understand the process, realities, rights, and available resources. You can find sources of financial assistance including how to obtain free or discounted medications

    The Complex Care Center at Cincinnati Children's connects patients and families with web sites that provide general information, checklists, strategies and sample letters to assist you with health insurance issues.

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    Healthcare Reform

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

    • Healthcare.gov has current, comprehensive information including understanding the new Affordable Care Act 2010, insurance options, coverage for people with disabilities and differences in coverage between states. You can read about the new Pre-Existing Condition Insurance Plan which will be available in every state, but may vary depending on your state.
    • American Academy of Pediatrics has current information on health care reform issues.
    • Center for Health Care Strategies is a nonprofit health policy resource center dedicated to improving health care quality for low-income children and adults, people with chronic illnesses and disabilities, frail elders, and racially and ethnically diverse populations experiencing disparities in care. They work with state and federal agencies, health plans, providers, and consumer groups to develop innovative programs that better serve people with complex and high-cost health care needs.
    • 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.
    • FamiliesUSA has a comprehensive series of articles on the the Affordable Care Act
    • 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.
    • Health Foundation of Greater Cincinnati has detailed information about the health reform law, timelines and resources.
    • Health Law Helper from Consumer Reports provides free updates on health care reform.
    • Kaiser Family Foundation provides current and reliable information on national health issues to policymakers, the media and the general public.
    • Kaiser Health News has updated information on health care reform legislation.
    • The Nation's Health has information on health care reform timelines.
    • Pew Research Center provides current information, research and data on issues and trends in health care.
    • Robert Wood Johnson Foundation partnered with George Washington University to provide current reports on health care reform.
    • Stand Up for Health Care has updated information on issues and legislation.

    Resources

    Find additional information on health insurance programs under Financial Assistance

    Glossaries

    Letters of Medical Necessity

    Many families depend on their insurance company to pay for expensive treatments, assistive technology and adaptive devices. Insurance denials can be appealed since decisions are sometimes made by an individual who may not be an expert on the condition or recommended treatment. It is important to know the fine details of your insurance policy.

    A strong letter of medical necessity or appeal can often make the difference in what an insurance company will cover. The physician or health care specialist writes the letter emphasizing how the individual's life will be affected by permitting or denying treatment. There are also rare situations when an attorney is needed. Alternative sources of funding may be available if the insurance coverage is inadequate or denied. These web sites provide sample letters, checklists, strategies and appeals process information. 

    • Medical Home Portal details the important components of an effective letter of medical necessity.
    • DoctorBach.com provides a variety of sample letters of medical necessity for treatment, equipment and training needs. The user can create a letter by filling in the blanks of a worksheet.  
    • Rifton Equipment offers a checklist for writing an effective letter of medical necessity, sample letters, and strategies on how to deal with the appeals process.