What do I have to do in order to get Social Security Disability Insurance (SSDI) payments?

Many people have misconceptions about SSDI. In order to qualify, you must have paid in enough credits to Social Security. This is because SSDI is an insurance policy underwritten by the U.S. government. If you haven't paid enough credits, you cannot qualify for this benefit. The value of credits changes from year to year and exceptions are made for younger people who have not worked long enough to accumulate enough credits. Contact the Social Security Administration to see if you might qualify. SSDI is not your own money, even though you paid into the system. The money workers are paying right now pays for the benefits for people who are receiving SSDI right now.

Social Security has some very specific criteria for determining disability. The following is taken from their Web site:

The definition of disability under Social Security is different than other programs. Social Security pays only for total disability. No benefits are payable for partial disability or for short-term disability.

"Disability" under Social Security is based on your inability to work. We consider you disabled under Social Security rules if:

• You cannot do work that you did before.

• We decide that you cannot adjust to other work because of your medical condition(s).

• Your disability has lasted or is expected to last for at least 1 year or to result in death.

This is a strict definition of disability. Social Security program rules assume that working families have access to other resources to provide support during periods of short-term disabilities, including workers' compensation, insurance, savings, and investments. Before applying for these benefits you should check to see if you have enough credits, talk with all of your doctors, and seriously consider consulting an attorney who specializes in Social Security.

If approved, your payments cannot start until you have been disabled for at least 5 full months. Generally, your disability benefits will continue as long as your medical condition has not improved and you cannot work.

Benefits will not necessarily continue indefinitely. Because of advances in medical science and rehabilitation techniques, many people with disabilities recover from serious accidents and illnesses. Your case will be reviewed at regular intervals to make sure you are still disabled. You are responsible for telling the Social Security Administration if your medical condition improves, if there is any change in your ability to work, or if you return to work. Depending on the amount of your payments, you may even have to pay income tax on them. You will not be eligible to enroll in Medicare until you have received benefits for 2 full years.

What is HIPAA?

HIPAA stands for the Health Insurance Portability and Accountability Act. The law has many provisions about fraud and finances and such, but the Privacy Rule is particularly relevant when dealing with chronic illness. The HIPAA Privacy Rule creates national standards to protect individuals' medical records and other personal health information. You have the right to control the disclosure of your personal health information including:

• Advance consent for most disclosures of health information

• The right of individuals to see a copy of their health records

• The right to request correction of inaccurate health records

• The right to obtain documentation of disclosures of their health information

• The right to an explanation of their privacy rights and how their information may be used or disclosed

These are your rights. Read them again. The days of your medical records being kept from you are over. If you see something that is wrong, you can request that it be corrected. Note that you have a right to see your health records. If you want a copy, you might be charged a nominal fee. You will find that it is worth the trouble.

HIPAA also safeguards your personal medical information. In the vast majority of cases, a patient's health care information can only be used for such purposes as treatment and payment. Employers cannot obtain your personal information for the purpose of hiring, firing, or determining promotions without your consent. Insurance companies cannot use your personal health information for the purpose of underwriting products like life insurance. You can learn more about HIPAA on the U.S. Department of Health and Human Services Web site (hhs.gov/ocr/privacy/index.html).

How can I be sure that my wishes will be honored if I am unable to make medical decisions for myself?

No one wants to think or talk about critical care or end-of-life issues. You may have mentioned your opinions about what you would like to happen if you are not able to make your wishes known to medical providers, but that is not enough to make sure your wishes are carried out. Your loved ones may have opinions that are different from yours. Your loved ones may interpret what you said very differently. Take time to think about what you want. Do you want every effort made to keep you alive, no matter what that is? Do you want nutrition and hydration but not a ventilator? Discuss your wishes with your doctor. Put them in writing and have it witnessed. Your local hospital will probably

Discuss your wishes with your doctor.

have a blank form that you can use. Don't put the copy away in your safe deposit box! If you can't speak for yourself, you certainly can't get into your safe deposit box to get this document. Give copies to all of your doctors, and have them placed in your chart. Explain your wishes to your doctors as well. Give copies to the family members who will most likely be charged with making sure this document is honored.

End-of-life issues are not the only ones with which you should be concerned. You may be temporarily incapacitated and not able to make decisions for yourself. In that case, you need a health care proxy or surrogate. It might be a family member. But remember, a family member will be influenced by his or her own emotions. A trusted and objective friend might be a better choice. You are the only person who knows. Again, your local hospital is a good resource for further information.

Review these documents at least once a year. Your changing health, changing relationships, and your own changing attitudes make this review a necessity. Aging with Dignity/Five Wishes and Hospice both have excellent materials to help you make decisions and create these documents. You will find contact information for these groups in the Appendix.

What should I know about my medical records?

Your medical records are extremely important. They provide a history of your health and your chronic illness. If new symptoms develop, these records will be helpful in the detective work that leads to an accurate diagnosis.

Your medical records are yours. You have a right to have a copy. It is legal for your provider to charge a nominal fee for making copies. You are less likely to get charged if you ask for copies of your most recent tests and such at the end of each visit. You also have a right to check the medical records for accuracy. This is especially important if you apply for any kind of disability. One sentence taken out of context can destroy your case.

All of your providers should have copies of all your records. It is your job as a patient to make sure this happens. Either hand-deliver a copy to your other providers or ask that these records be faxed to them. You want the best care possible, and that just won't happen if the right hand does not know what the left hand is doing.

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