Financial Records Keeping track of the voluminous financial paper work is a trial for every parent of a child with cancer, but keeping good records can prevent financial catastrophe. The following are ideas on how to organize financial records: Set up a file cabinet just for medical records. Have hanging files for hospital bills, doctor bills, all other medical bills, insurance explanations of benefits (EOB), prescription receipts, tax deductible receipts (tolls, parking, motels, meals), and correspondence. Whenever you open an envelope, file the contents immediately. Don't lay it on the desk or throw it in a drawer. Keep a notebook with a running log of all tax-deductible medical expenses, including the service, charge, bill paid, date paid, and check number. Don't pay a bill unless you have checked over each item listed to make sure that it is correct. Start new files every year. Three parents describe how they deal with paperwork: I bought an accordion-style file folder each year to hold everything to do with Stephan. It had a slot each for hospital bill printouts, insurance explanation of benefits, receipts for all prescriptions, all Candlelighters newsletters, pediatrician bills, laboratory bills, and other information. •  •  •  •  •   To be honest, the paper trail really gets me down. I can only deal with the stacks every few months. I open things and make sure that the insurance company is doing their part, and then I try to sort through and pay our part. •  •  •  •  •   I started out organized, and I'm glad I did because the hospital billing was confusing and full of errors. I cleared out a file cabinet and put in folders for each type of bill and insurance papers. I filed each bill chronologically so I could always find the one I needed. I made copies of all letters sent to the insurance company and hospital billing department. I wrote on the back of each EOB any phone calls that I had to make about that bill. I wrote down the date of the call, the person's name that I spoke to, and what she said. It saved me a lot of grief. What are deductible medical expenses? It is estimated that families of children with cancer spend 25 percent or more of their income on items not covered by insurance. Examples of these expenses are gas, car repairs, motels, food away from home, health insurance deductibles, prescriptions, and dental work. Many of these items can be deducted on federal income tax. Often parents are too fatigued to go through stacks of bills at the end of the year to calculate their deductions. If a monthly total is kept in a notebook, then all that needs to be done at tax time is add up the monthly totals. Medical expenses that could be deducted on US taxes for 1998 were: acupuncture, ambulance, artificial limb, artificial teeth, expenses to modify your home to provide medical care for your child, crutches, dental treatment, HMO fees, hearing aids, hospital services, insurance premiums, laboratory fees, special school or tutor for child with learning disabilities, lodging costs for family when child is hospitalized, meals at hospital, physician's services, medicines, nursing care, operations, osteopath, oxygen, psychiatric care, psychological care, therapy, transplants, transportation to obtain medical care, wheelchair, and x-rays. To find out what can be legally deducted for the years your child is undergoing cancer treatment, get IRS publication 502. This booklet is available at libraries and IRS offices or by calling (800) TAX-FORM, (800) 829-3676 from 8 a.m. to 5 p.m. weekdays and 9 a.m. to 3 p.m. Saturdays. Canadian families are able to deduct many of the same medical expenses as those living within the US. To find out what can be legally deducted in Canada for the years your child is undergoing cancer treatment, contact Revenue Canada and ask for IT-519R2- Medical Expense and Disability Tax Credits. Call Revenue Canada at (800) 959-8281 between the hours of 8:15 a.m. and 5 p.m. weekdays. If you keep a calendar, an easy way to keep track of tax-deductible items is to glue an envelope inside its cover. Whenever you incur a tax-deductible expense, put the receipt in the envelope, and file it when you get home. Dealing with hospital billing Unfortunately, problems with billing are the norm rather than the exception for parents of children with cancer. It is impossible to prevent billing errors, but necessary to deal with them. The following are step-by-step suggestions for solving billing problems: Keep all records filed in an organized fashion. Check every bill from the hospital to make sure there are no charges for treatments not given or errors such as double billing. Check to see if the hospital has financial counselors. If so, make contact early in your child's hospitalization. Counselors provide services in many areas, including help with understanding the hospital's billing system, billing insurance carriers, understanding explanations of benefits, hospital/insurance correspondence, dealing with Medicaid, working out a payment plan, designing a ledger system for tracking insurance claims, and resolving disputes. If you find a billing error, call the hospital immediately. Write down the date, the name of the person you talk to, and the plan of action. If the error is not corrected on your next bill, call and talk to the billing supervisor. Explain politely the steps you have already taken and how you would like the problem fixed. If the problem is still not corrected, write a brief letter to the billing supervisor explaining the steps you have taken and requesting immediate action. Keep a copy of each letter that you write. Every time you receive an explanation of benefits (EOB) from your insurance company, compare it to the hospital bill. Track down any discrepancies. If you are inundated with a constant stream of bills and there are major discrepancies between the hospital charges and what is being paid for by your insurance, ask both the hospital billing department and your insurance company, in writing, to audit the account. Insist on a line-by-line explanation for each charge. If you are too tired or overwhelmed to deal with the bills, ask a family member or friend to help. He could come every other week, open and file all bills and insurance papers, make phone calls, and write all necessary letters. Some friends might even enter all your records on a computer for storage. Don't let billing problems accumulate. Your account may end up at a collection agency, which can quickly become a nightmare. Not all stories are so grim. People who are in a socialized healthcare system or on public assistance never even see bills. Many people with insurance encounter no problems throughout their child's treatment. Coping with insurance Finding one's way through the insurance maze can be a difficult task. Understanding the benefits and claims procedures can help parents get the bills paid without undue stress. The following sections outline steps that will help prevent problems with insurance. Understand your policy As soon as possible after diagnosis, read your entire insurance manual. Make a list of any questions you have on terms or benefits. Learn who the "participating providers" are under the plan, for, in today's managed healthcare climate, there may be a limited network of providers and hefty penalties or no benefits if the patient goes outside the network. Find out what your deductible is. Find out if there is a point where coverage increases to 100 percent. Determine if there is a lifetime limit on benefits. Find out when a second opinion is required. Learn when you have to notify the company about hospitalizations--many firms require pre-notification except in the case of emergency. Get a copy of every form that you may need to submit--claim forms for inpatient care, outpatient care, or prescriptions. You can cut down on paperwork by filling in all the subscriber information on one of each type of form (except date and signature) and then making many copies. You will have a form ready to send in with each bill. It may be helpful to determine whether your policy has benefits for counseling. If so, find out how many visits are covered and the level of training required (sometimes only counseling by persons with an MA or PhD degree is covered). Ask if there is a home nursing benefit and how many visits are covered. A parent describes how, unexpectedly, services were available and covered by insurance: We changed to a new pediatrician, and he asked me if I thought it would be easier on my son to have visiting nurses come to our home to do the chemotherapy injections and some blood work. Since he had very low counts, it made a lot of sense not to have to go out. It also lessened his fears to be able to stay at home and have the same nurse come to do the procedures. It was a pleasant surprise to find these services covered by our insurance. Find a contact person As soon as possible after diagnosis, call your insurance company and ask who will be handling your claims. Explain that there will be years of bills with frequent hospitalizations, and it would be helpful to always deal with the same person. Insurers may be able to offer parents a contact person for claim review or special needs. Ask the contact person to answer any questions that you have on benefits. Try to develop a cooperative relationship with your contact person because she can really make your life easier. Also, the employer may have a benefits person who can operate as a liaison with the insurer. A parent describes her experience: My employee benefits representative was Bobbi. She was just wonderful. The hospital would send her copies of the bills at the same time as they sent mine. Since I found so many errors, she would hold the bills a week until I called to tell her that they were correct before she paid them. She was very pleasant to deal with. Negotiate Don't be afraid to negotiate with the insurance company over benefits. Often, your contact person may be able to redefine a service that your child needs to allow it to be covered. One parent's story: My husband works for a small city that contracts out health insurance. A year into our child's treatment, the contract was being renegotiated. He brought home a copy of the proposed contract, and I was horrified to see that they had halved the benefit for transplants, from $200,000 to $100,000. I called the members of the committee negotiating the contract, the union representative, the city insurance liaison, and the city attorney. I was very polite, but I told them that if my child needed a bone marrow transplant, the new contract would bankrupt us. We would lose our home and have to sell all of our belongings to pay our part of the procedure. Then I called two transplant centers, and had them fax me the estimated cost of a routine bone marrow transplant (about $220,000). I sent copies of the fax to everyone that I could think of, and followed it up with phone calls. They changed the new contract back to $200,000. One person can make a big difference. Challenging a claim The key to obtaining the maximum benefit from your insurance policy is to keep accurate records and to challenge any denied claims. Some tips on good record keeping are: Make photocopies of everything you send to your insurance company, including claims, letters, and bills. Pay bills by check, and keep all of your canceled checks. Keep all correspondence from billing companies and insurance. Write down the date, name of person contacted, and conversation of all phone calls concerning insurance. Keep accurate records of all medical expenses and claims submitted. Policyholders have the right to appeal a claim denial by their insurance company. The following are suggested steps to contest a claim: Keep original documents in your files, and send photocopies to the insurance company with a letter outlining why the claim should be covered. Make sure to get the reply in writing. If the insurance company is refusing coverage because they claim the procedure is "investigational" or "experimental" and therefore not covered, contact the Childhood Cancer Ombudsman Program for assistance. This organization offers a free service to help families maximize benefits or resolve disputes. Contact your elected representative to the US Congress. All Senators and members of the House of Representatives have staff who help constituents with problems. If all of the above steps do not resolve the dispute, take your claim to small claims court, or hire an attorney skilled in insurance matters to sue the insurance company. Above all, don't be afraid to ask questions, and be persistent! Sources of financial assistance Sources of financial assistance vary from state to state and province to province. To begin to track down possible sources, ask the hospital social worker for assistance. In addition, some hospitals have community outreach nurses or case workers who may point out potential sources of assistance. Hospital policy. If you find yourself unable to pay your hospital bills, don't sell your house or let your account go to collections. Ask the social worker to set up an appointment for you with the appropriate person to discuss the hospital policy on financial assistance. Many hospitals write off a percentage of the cost of care if the patient is uninsured or under-insured. Be proactive and talk to the hospital about setting up a monthly payment plan. SSI (Supplemental Security Income). SSI is a federal (US) program administered by the Social Security Administration, and is an entitlement based on family income. Recipients must be blind or disabled and have a low family income and few assets. Children with cancer qualify as disabled for this program, making some of them eligible for monthly aid if the family income and assets are low enough. To find out if your child qualifies, look in the phone book under "United States Government" for "Social Security Administration." Call the nearest field office to determine if your child is eligible for SSI. Medicaid. Medicaid is administered by state governments in the US, with the federal government providing a portion of the entitlement. Rules on eligibility vary, but families with private insurance sometimes are eligible if huge hospital bills are only partially covered. Call your local or county social service department to obtain the number for the Medicaid office in your area. If they tell you that your child is ineligible, ask if the state has an "Aged, Blind, Disabled, Medically Needy" program. In addition to helping pay some or all hospital bills, Medicaid sometimes also pays transportation and prescription costs. Some states cover children under the age of 21 if they are hospitalized for more than 30 days, regardless of parental income. States are supposed to have Children's Medical Services programs to pay for medical treatment of physically disabled children. These programs allow a higher income level than Medicaid. Ask for a detailed list of benefits available in your state. Free medicine programs. Many drug companies have programs to provide free medicines (including chemotherapy) to needy patients. Eligibility requirements vary, but most are available to those not covered by private or public insurance programs. You can get a free copy of the Directory of Pharmaceutical Patient Assistance from the Pharmaceutical Manufacturers Association in Washington, DC (toll-free hot line for physicians: (800) PMA-INFO; online at http://www. pharma.org/patients/). While the cost of in-hospital treatment in Canada is covered by provincial governments, families have to pay for other medications at their own expense. For those without private insurance, this usually creates an extreme financial hardship. In many instances, the Department of Social Services can help pay for medications. The qualifications vary in each province and the decision is based on financial need. Canadian parents should contact their provincial Department of Social Services for further information. Service organizations. There are numerous service organizations that can help families in need. They provide all kinds of aid: transportation, wigs, special wheelchairs, and food. Often, all a family has to do is describe their plight, and good Samaritans appear. Some organizations that may exist in your community are: American Legion; Elks Club; fraternal organizations such as the Masons, Jaycees, Kiwanis Club, Knights of Columbus, Lions, and Rotary clubs; United Way; Veterans of Foreign Wars; and churches of all denominations. In addition, local philanthropic organizations exist in many communities. To locate them, call your local Health Department, speak to the social worker, and ask for help. Organized fund raising. Many communities rally around a child with cancer by organizing a fund. Help is given in various ways, ranging from mason jars in local stores to an organized drive using all of the local media. There are many pitfalls to avoid in fund raising, and great care must be exercised to protect the privacy of the sick child as much as possible. If your child is on or seeking Social Security or Medicaid eligibility, funds must be held in a special needs trust and paid directly to providers. If the family receives the money or the child's Social Security number is used to open the bank account, the child can lose both Social Security and Medicaid. This fact sheet was derived from Childhood Cancer: A Parent's Guide to Solid Tumors Cancers, by Honna Janes-Hodder and Nancy Keene, © 2001 by Patient-Centered Guides. For more information, call (800) 998-9938 or see www.patientcenters.com.