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Insurance Issues

As many of our families can tell you, the challenge of getting medical coverage for a chronic disease, such as CAH is often frustrating and extremely stressful. Tricia and Calvin Luker, from Michigan, who are parents of a child with a metabolic disorder, have written two excellent articles on how families can best approach these financial concerns. Below highlights some of the important points that they raise.

  • To get the most out of your insurance company you need to develop a thorough understanding about your policy. If you have frequent claims, you should consider the following:
  • Withhold payment of the medical bill until you receive insurance payments if you are on a tight budget. Discuss your financial situation with your doctor. Generally, you only have to make a small payment every month to ward off bill collectors.
  • Work directly with one particular claims examiner. When they get to know you and your family’s medical situation, often they are better able to assist you. Make sure you keep notes on whom you spoke with and when.
  • Submit claim forms carefully and methodically. Have a separate “Claims Submitted” folder for each member of the family with copies of all claims, bills and correspondence. Your copy is important protection in the event the paperwork is lost or replaced or needed for future reference. Also, include a reference list of prescription numbers with the names of the drugs in your folder.
  • Check your claim carefully before submitting to ensure that it is not delayed because of incomplete information; don’t claim too many different types of items on one form. If one is rejected, it may delay the processing of the entire claim.

If you were denied coverage and believe that you are entitled to payment under your plan, these are some steps that you can take:

  • Appeal your denied claim to your health insurance company at least twice.
  • If you are not reimbursed after these appeals without adequate explanation, contact your state’s Department of Insurance and ask to speak with someone in the Office of Consumer Affairs regarding a health insurance problem.
  • Send the person you speak with a written description of the problem and any literature from your insurance company that supports your case that the service should be covered, and any additional information you feel is important. Give the Department of Insurance two weeks to respond. If you receive no response, call them again and speak to the person you originally contacted. Wait another two weeks. If you still get no satisfactory response and the amount is sizable, consider talking with a lawyer to resolve your case.

The Lukers’ articles also include explanations on how to seek out other financial sources if your medical insurance is not sufficient to meet your needs and professionals who can assist you in this search. Some of the financial sources they suggest include: tax-supported government programs at the local, state and national levels; voluntary health agencies; and charitable organizations.

A Family Guide to Common Terms Associated With Managed Care
By Tricia and Calvin Luker (Highly Recommend reading)

The article above is reprinted with the expressed consent and approval of Exceptional Parent, a monthly magazine providing information and support for the special needs community. Call (877) 372-7368, or log onto

A medical insurance policy or HMO plan is nothing more than a contract for the insurance company to provide certain services to you and your family. It is imperative that you understand your plan and the terms of your contract with them. The following section is an overview of the various kinds of insurance products available and whether or not the product gives you recourse through your state’s Department of Insurance (regulated vs. unregulated by the states) if you feel that benefits were denied you unjustly. If a dispute arises, you should read over the terms of your insurance policy to see exactly what is covered. If it is a regulated policy, you may contact your state’s Department of Insurance to intervene. If it is an unregulated plan, you may have recourse through the U.S. Department of Labor website or call 1-800-998-7542 or (202) 219-8776.

Health Maintenance Organization (HMO)

Any organization that directly or through contracts with providers, furnishes at least basic comprehensive healthcare services on a prepaid basis to enrollees in a designated geographic area.

Health Service Corporation

A corporation that is organized for the purpose of establishing, maintaining and operating a nonprofit health service plan and supplying health care services and conducting the business of insurance.


A type of health benefit plan that reimburses the insured for amounts paid for health care services and supplies, subject to Usual/Customary/Reasonable (UCR) charges and deductible and coinsurance provisions. This type of plan does not require the use of particular providers, or provide different benefits depending on the provider chosen.

Organized Delivery System (ODS)

An organization with defined governance that

a) is organized for the purpose of and has the capability of contracting with a carrier to provide, or arrange to provide, under its own management substantially all or a substantial portion of the comprehensive health care services or benefits under the carrier’s benefit plan on behalf of the carrier, which may or may not include the payment of hospital and ancillary benefits; or

b) is organized for the purpose of acting on behalf of a carrier to provide, or arrange to provide, limited health care services that the carrier elects to subcontract for as a separate category of benefits and services apart from its delivery of benefits under its comprehensive benefits plan, which limited services are provided on a separate contractual basis and under different terms and conditions than those governing the delivery of benefits and services under the carrier’s comprehensive benefits plan.

An organized delivery system does not include an entity otherwise authorized or licensed in a state to provide comprehensive or limited health care services on a prepayment or other basis in connection with a health benefits plan or a carrier. An ODS does not include an entity that provides pharmaceutical, case management or employee assistance plan services.

Note: an ODS is state regulated vs. a PPO, which is unregulated.

Selective Contracting Arrangement (SCA) – through PPO or POS

An arrangement between an insurance carrier and a group of preferred providers, and/or preferred provider organizations, whereby health benefit plans, based on predetermined fees, or reimbursement levels, are offered. In these health benefit plans, coinsurance or deductibles vary depending on whether one uses in-network or out-of-network providers to receive health care services. a) Preferred Provider Organization (PPO) – managed care arrangements consisting of a group of hospitals, physicians, and other providers who have contracts with an insurer, employer, third-party administrator, or other sponsoring group to provide health care services to covered persons. Note: a PPO is a network that is unregulated. A state, through its regulatory powers, can only put pressure on insurance companies, who must then put pressure on the Network. A state cannot directly influence the network. b) Point of Service (POS) Plans – Combination of HMO and PPO features. This type plan provides a comprehensive set of health benefits and offers a full range of health services much the same as an HMO. However, the members do not have to choose how to receive services until they need them. The member can opt to use a managed care in-network provider, or can go out-of-network for services, but pays the difference for non-network benefits (e.g. 100% coverage for managed care vs. 80% coverage out-of-network). Self-Funded Plans Employers, business, and other entities that choose to assume the responsibilities of an insurance company to insure their employees and dependents. (Note: These plans are generally not regulated by the states).

Thanks to a grant from the Robert Wood Johnson Foundation, the Georgetown University Institute for Health Care Research and Policy has written A Consumer Guide for Getting and Keeping Health Insurance for each state and the District of Columbia – fifty-one in all. These Consumer Guides are available at this website and will be updated periodically as changes in federal and state policy warrant.

The Guides summarize your protections, and so may not answer all of your questions. They are not a substitute for legal, accounting, or other professional advice. Please consult a qualified expert before making any decisions about your own health insurance.

The organization called PhRMA has a list of patient assistance programs offered by each drug company for prescription drugs at its website. If you cannot pay for medication, these programs can help.
Quest Diagnostics is committed to providing clinical laboratory services to all patients regardless of their ability to pay. Through their Indigent Patient Program they may adjust some or all laboratory charges for patients who are uninsured and cannot afford to pay for their clinical laboratory testing. Please click here for more information.
Two states, New Jersey and Massachusetts, have plans that provide a safety net for families dealing with the catastrophic illness of a child (under 19 years of age). What defines “Catastrophic” is the extent of the medical expenses that are unpaid by insurance or other benefits plans (Medicaid, MediCal, etc.). For both plans, once those expenses reach 10% of the family’s income in a given year (for the 1st $100,000 in income plus 15% of income over $100,000), the plan will pay those unreimbursed expenses. In New Jersey, family assets are not looked at, only the amount of the unreimbursed expense in a given year. In Massachusetts, the Commission may look at assets, but it is a new program and the rules are still evolving. These expenses may include experimental treatments or care not normally provided by your plan. In New Jersey, it may cover out-of-state care. In Massachusetts, these rules have not yet been developed. They will also cover those who do not have insurance or where and exclusion exists for a pre-existing condition.

Both states have complicated rules and requirements that must be complied with, so you should contact the Commissions for further information and details. This is merely a short summary.

New Jersey

The Catastrophic Illness in Children Relief Fund Commission
New Jersey Department of Human Services
P.O. Box 700
Trenton, NJ 08625-0700
(609) 292-0600
Family Information Line: 1-800-335-FUND (3863)


The Catastrophic Illness in Children Relief Fund
Call 800-882-1435; ask for Catastrophic Illness in Children Relief (in MA) (from the National Law Program)
“Dedicated to helping consumers get the most out of their health care, features hundreds of articles with information about everything from keeping health care costs down and coping with emergencies to dealing with denied claims and what people can do when they lose coverage.

In addition to lots of helpful facts and information, visitors will also find links to many other useful web sites as well as an opportunity to voice their opinions on national health care issues.”

Other Useful Links

A Consumer Guide to Handling Disputes with Your Employer or Private Health Plan

The Patient Advocate Foundation

MediCaid in the States—a State By State Guide

State-by-state list of healthcare and insurance resources

GINA & You – user-friendly materials to help health-care providers and members of the public understand their rights and responsibilities under the Genetic Non-Discrimination Act (GINA) and essential information about its details. The documents are also clear about what GINA doesn’t cover.