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The Patient's Bill of Rights Debate - How It Will Impact the Disabled

Access to affordable health care is a concern of every American. As a response to rising health care costs, insurance providers have switched to a managed care system utilizing health maintenance organizations (HMOs). While this new managed care arrangement has been mildly successful in controlling costs, in doing so, the quality of health care provided has declined. More and more people are coming forward with experiences where HMOs deny them coverage, basic service, or refuse payment after the fact in order to control costs. In reaction to this, Congress has taken up new legislation, the Patient's Bill of Rights, to limit the ability of HMO and other providers to deny coverage and be held accountable for their decisions on patient care.

One group in particular is adversely impacted by the rising costs of health care and ill treatment by managed care providers - the disabled. Because the disabled require more medical care than other patients do, they incur significantly higher costs. These higher costs lead providers to shy away from insuring individuals with disabilities. Any potential Patients' Bill of Rights that is passed by Congress needs to address the needs of individuals with disabilities so they are able to continue receiving the health services they require.

We encourage you to investigate additional details about the Patient's Bill of Rights legislation and contact your Senators or Representatives to show your support for and concerns about this legislation. In order for positive changes to happen, you must understand the issues at hand, and make your voice heard, because without your support, nothing may happen. Everyone must get involved in deciding the direction of their futures, so that everyone may benefit from legislation such as this to improve the lives of individuals with disabilities.

The National Council on Disability (NCD) has done a study on health care coverage for individuals with disabilities, and made recommendations for possible reforms. We at New Horizons Un-Limited agree strongly that these principles need to be part of any meaningful reform to the managed care system, and essential to aiding individuals with disabilities with receiving quality health care. These are the main suggestions listed in the National Council on Disability report:

• Scope of Coverage - A Patient's Bill of Rights should cover all individuals with private insurance to ensure that this protection extends to those with disabilities as well. A large percentage of individuals with disabilities receive their health coverage from the private sector and require protection to maintain that coverage. If a Patient's Bill of Rights did not extend this scope to all of the insured, discrimination against high cost patients (i.e. individuals with disabilities) could result.
• Timely Access to Specialized Care - Most individuals with disabilities require access to specialists with expertise on their condition. General practitioners often lack the detailed knowledge to address the needs of individuals with disabilities, so early access to specialty care provides additional health benefits. Also, heath care needs of individuals with disabilities are best met when the focus of their treatment is on maintenance of function, instead of treating health problems as they arise or after the fact.
• Point of Service Option - Health plans should be open to allow individuals with disabilities and their families to use a specialist of their choice, with reasonable cost sharing from their insurance provider. The closed system, where certain health plans only allow a person to use doctors within their network, denies the disabled a chance to obtain a specialist of their choosing. This is important to the disabled because of the nature of care they require; care is often unavailable within a single network.
• Continuity of Care - A continuity of care feature would allow a disabled individual a grace period after a health plan has ended to continue to utilize health services. There would be little interruption to the care they are receiving, and would allow time to find another provider without disruption of treatment. Under the current system, there is no grace period and coverage can be eliminated immediately. This leaves individuals with disabilities little security for their health coverage and puts their overall health at risk if coverage is removed.
• Standing Referrals - Individuals with disabilities who require frequent specialty care need to have this option. They should be able to visit specialists as needed, and without waiting to secure a referral from their physician. By eliminating the need for referrals, a patient can go directly to the necessary specialist and receive timely care and possibly improvement in their condition. If a disabled individual is forced to constantly wait for referrals, they are not receiving the specialized care they need and their condition could worsen.
• Elimination of Gag Clauses - Providers need to give patients all medical options, not just the cost effective ones. By eliminating gag clauses, there can be open and honest communication between patient and doctor and the best option for the patient can be determined. Overall, the need for information presented in a format that is simple, easy to understand, and allows a patient to make an informed decision on their treatment is needed. Health providers need to have information in formats that are easily accessible for the disabled.
• Emergency Room Protection - An individual with a disability may, from time to time, need emergency care. These patients should have the right to visit the nearest emergency room and have the health provider pick up the cost, without prior authorization. If not, this same individual could be held liable for thousands of dollars for using the emergency room, while essentially having no choice because they need the care. This is an essential feature.
• Strong Grievance Procedures - Patients, including individuals with disabilities, need access to internal and external appeals system to resolve grievances with care they receive. Health providers need to be accountable for the decisions they make. An internal review combined with an independent external review would provide the most equitable evaluation and resolution for disputes between patients and providers.
• Health Plan Liability - Health plans need to be held accountable for the decisions they make. These decisions can lead to injury and possibly death. There needs to be legal remedies for patients and their families that are harmed as a result of poor care or bad decisions from the health plan. However, the need for accountability must be balanced with minimizing costs for health providers. If lawsuits are allowed unchecked, health providers will past these costs down to consumers as higher costs and premiums. The two must be balanced.

These are the major reforms that should be part of any Patients' Bill of Rights that is passed by Congress. A bill that does not contain all of these provisions will not fulfill the needs of the disabled community for adequate health care.

After the election of 2000, the prospects for immediate action on patients' rights legislation looked bleak. President Bush has discussed patient's rights and HMO reform during his campaign, but it was not the centerpiece of his message. This changed when Senator Jim Jeffords decided to leave the Republican Party and become an independent. Control of the Senate shifted from the Republicans to the Democrats and the agenda moved with it. Now, the Democrats can use their control of the Senate to bring up their own agenda, and the top of that agenda is enacting a Patients' Bill of Rights. President Bush and other Congressional Republicans must now react to the Democrats and their legislation with a bill of their own.

Both parties have offered their own versions of patients' rights legislation. The first bill authored by Senator Ted Kennedy (D-MA), and sponsored by Senator John Edwards (D-NC) and Senator John McCain (R-AZ) is the Democrats reform proposal. The Republican alternative, sponsored by Senator Bill Frist (R-TN), Senator John Breaux (D-LA), and Senator Jim Jeffords (I-VT), contains many of the same reforms but also differs from the Democratic version over a key issue.

Overall, the two bills do differ in many ways, but there is agreement over several key issues regarding access to medical treatment. Both bills guarantee patients reimbursement for emergency room visits and eliminated the needs for referrals to receive reimbursement. Also, both bills would allow easier access to specialized care. Primary doctors would not be able to deny access to specialists based on costs. Further, both bills would add a continuity of care feature to insurance coverage. Each bill requires continued coverage for 90 days after the health plan is terminated for individuals with chronic or complex conditions. Each of the bills also contains accountability factors. Both bills have mechanisms for review of HMO decisions, and internal and external review processes. If these do not satisfy patients, there is also language built into each bill that would allow individuals to sue their health providers. Finally, both bills would ban the "gag clause" which prevents doctors from discussing costly treatments with patients to help hold down costs.

While there are similarities, there are also some very significant differences between the two Patients' Bill of Rights offered by the Republicans and Democrats. The first is payment for specialists outside a health plan. The Democratic version allows a patient to see outside help at the same cost as seeing a doctor within their plan. Republicans let health plans decide whether to pay for specialists who are not within the plan. The major disagreement between the two bills is the right to sue one's health provider. The two bills differ over the amount that health providers can be held liable for, the jurisdiction under which they can sue. Democrats want to remove restrictions that currently protect insurance providers from being sued. The Democratic proposal would allow patients to sue insurance companies for medical decisions in state courts and for administrative decisions in federal court. Each state's law determines the damages that could be awarded for medical decisions, no punitive damages would be allowed, and administrative damages would be capped at $5 million in federal court. There would be no restrictions on economic and non-economic (i.e. pain and suffering) damages. The Republican version of the Patient's Bill of Rights is much more restrictive with its guidelines for suing insurance providers. First, patients can only sue over medical and coverage decisions, and then only if the insurance provider's actions did not agree with an external reviewer's recommendations. Damages are much lower under the Republican version. Non-economic damages are restricted to $500,000 and there are no punitive damages allowed. Any legal action must take place within the federal court system, which has historically given lower amounts than state courts.

Both sides claim their piece of legislation is superior. The Democrats argue that there is not enough accountability for insurance providers, and they should be held to the same malpractice standards as the doctors providing the care. They readily admit that their bill will increase costs to consumers - roughly raising insurance costs by 4.2 percent http://www.cnn.com/2001/allpolitics/06/21/patients.bill.bigp/index.html. The Republican version places a higher value on keeping costs for the consumer low, while still trying to provide reasonable patient protections and remedies for wrongdoing by an insurance company. They view the Democratic bill as trial lawyer protection citing the unlimited judgments allowed, and the ease with which a lawsuit can be brought. The Republican bill would also lead to higher costs because of the new requirements it places on HMOs, and would cause costs to rise approximately 2.9 percent http://www.cnn.com/2001/allpolitics/06/21/patients.bill.bigp/index.html. This is the main contention between the two parties and is what is holding up a compromise bill.

We at New Horizons Un-Limited applaud the fact that this legislation is even being debated, and stands a good chance at becoming law in the not so distant future. One of the largest potential victims of HMO abuse has been the disabled. An HMO exists to reduce costs associated with health care, it attempts to eliminate the costliest items and denies services it believes too expensive. The problem with using an HMO based system to deliver health insurance is that because of their very nature, HMOs will try to deny health coverage to those who need it most because of the expenses they incur, individuals with disabilities. This is the one group in society that requires easy access to health services and they are being denied under the status quo because of the costs involved. The disabled community depends on an affordable and reliable health system to improve their quality of life more than any other group. Any Patients' Bill of Rights legislation is a move in the right direction.

Also, there are several provisions listed by the National Council on Disability that are not met by these latest bills. There are not specific or well spelled out point of service or stand referral provisions in either bill. These are services that can benefit individuals with disabilities by providing immediate care and reducing the red tape they have to navigate before they finally see a doctor. Any legislation that is eventually passed needs to recognize those individuals with disabilities have a unique view of health care. In order to maintain their quality of life, they need easy access to services that other people use once a year. Any reform needs to keep in mind that people, not profits, need to come first.

Remember, if you do not express your opinions and concerns about the Patient's Bill of Rights, and other legislation in Congress, positive change will not happen. Be sure to contact your Senators or Representatives to show your support of legislation affecting people with disabilities.

Information for this editorial was obtained from the following sources:

National Council on Disability

Cable News Network (CNN)

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