Spring 2004                                    CARES Foundation, Inc.
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Ask The Experts

Reprinted with permission from April NORD on-line

 

NORD (National Organization of Rare Diseases) asks people with expertise on particular topics to answer questions related to living with a disorder or disability. For this issue, we asked NORD’s registered nurse, Patti Kane-Carlsen, RN, MSN, to write about sources of help for people who are uninsured or underinsured since she receives many questions on that topic. Patti is in NORD’s office three mornings a week. People who have questions related to caregiving or accessing services may contact her at RN@rarediseases.org or (203) 744-0100.

Q NORD has a Medication Assistance Program, but it doesn’t cover my medication. What can I do? Also, I need medical insurance coverage… What about disability services?

A Since 1987, NORD has administered medication assistance programs to assist uninsured or under-insured individuals in securing life-saving or life-sustaining medications. NORD works closely with humanitarian-minded pharmaceutical and biotechnology companies to ensure that certain vital medications are available to those individuals whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications. If your medication is not covered here, check directly with the manufacturer – they might be running their own program. Check with your pharmacist for the manufacturer name if you do not know it. Look for them on the Internet to see if they have a program. Of course, there are

eligibility requirements that you would need to meet.

There are other prescription coverage programs available – you will have to do some research to find the one that works for you. Medicare has an excellent website that has a page devoted to "Prescription Drug and Other Assistance Programs". The programs they cover are not necessarily for senior citizens only. Visit their website at http://www.medicare.gov/default.asp . If you do not have a computer, go to your local library and ask for help.

For medical insurance, you can start with your local social services department (listed in the government section of your phone book). You can also find your social services department on the Internet – use ‘your state name’ social services department as your keyword. You might also try your state insurance commissioner. To find yours, visit http://www.aiadc.org/LinksResources/StateInsuranceCommissioners.asp . You could also do a search using ‘your state name’ state insurance commissioner as your keyword. Look at the section for consumer services.

There is a federal program available for uninsured children. For information about the State Children's Health Insurance Program (SCHIP), visit http://www.cms.hhs.gov/schip/ Adults might need to look into Medicare and/or Medicaid. For information about Medicare & Medicaid Services, visit http://www.cms.hhs.gov/default.asp .

What is available for children with disabilities? Check out http://www.ssa.gov/pubs/10026.html for a booklet entitled "Benefits for Children with Disabilities". For information about Planning for your Disabled Child, visit http://www3.madd.org/nefe/home_sect/mh_planning.htm .

Children and/or adults with disabilities may be entitled to disability insurance. This is handled by the Social Security Administration. For information about SSI (Supplemental Security Income), including eligibility requirements and more, visit http://www.ssa.gov/disability/ . A website that answers Frequently Asked Questions about Social Security Disability (which might help you through the process) is http://www.nosscr.org/faqind.html . Another excellent resource for programs for the disabled is http://www.disabilityinfo.gov/ .

If you have no computer access, skills or desire to use one, you can find most of these services listed in the government section of the phone book. Call and ask for directions. If you are using a computer, you can also get more information by doing a search using the keywords most useful to you. Try sticking with the .gov and .org websites for this research.

Remember, all programs will have eligibility requirements. Find out what you can in advance, and then discuss options with a program administrator. Do not assume you are not eligible for a program based only on your research – call and ASK! Work to find the program that best fits your needs and eligibility.

Researching prescription coverage, medical insurance and disability services can be a tedious process. Keep records of your work including dates of correspondence, information gathered, and the full name of the person who helped you (if phone contact). If you are researching on the Internet, bookmark the websites you visit for future reference. If you are using a computer at the library, print the information you need – make sure you note the web address on the printout. Make copies of any applications filed – you might need to refer to them later.

It might be frustrating at times, but stick with the process – it may well pay off in the end!

 
  

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