(February 1999)

EXECUTIVE SUMMARY

The Critical Incident Report project of the New York City Chapter of the National Association of Social Workers (NASW) is designed to fill a void in information about the impact of managed care on patients and their providers when access and/or treatment does not go smoothly. There are statistical reports on patient satisfaction and some on quality. However, the NASW effort places a magnifying glass on the personal, social and financial consequences of problems usually described casually in percentages. More than 200 self reported cases form the basis of this first report (February 1999) of a series slated to continue through an entire year after mandated Medicaid managed care is fully implemented.

The cases reported fit into 6 problem areas in managed care:

A. Health care decisions are not made by patients and their providers.
B. Appeals related to inappropriate health care decisions are delayed or restricted.
C. Home care services are refused.
D. Emergency access is denied.
E. Barriers to care are rising.
F. Continuity of care is disrupted.

The reported data, when grouped, lead to recommendations for changes in managed care which could make a significant difference in reducing the painful experience of too many subscriber members of managed care organizations. These recommendations are:

1. Managed care organizations must inform patients, providers, and the public of their rights and responsibilities.
2. Managed care organizations must maintain an immediate response system for patients and providers who question decisions on access and appropriateness of their care plan. Utilization review, appeals and grievances must be handled in a timely manner as spelled out the law.
3. The newly mandated independent review authority must be established and publicized.
4. Appropriate government agencies must exercise their authority and responsibility for effective monitoring of managed care organizations.
5. Persons with serious or unusual illness must have access to recognized specialists in these areas.
6. Continuity of care must be maintained through the consumer's right to remain with their health or mental health provider should their coverage change.
7. The primacy and severity of psycho-social issues in so many treatment situations supports the need for social services under professional social work direction.

HOW HEALTHY IS MANAGED CARE?
Preliminary Report on Health and Mental Health Managed Care in New York City

The managed health care organization movement has promised consumers well managed, coordinated, and comprehensive health and mental health care services of high quality at an affordable cost. Staying healthy through preventive screenings and healthy behaviors is an important ingredient that the patient is asked to contribute to the equation. Careful management of resources and utilization, to counteract duplication and wastefulness, is the ingredient that providers and insurers are expected to contribute. Quality health care services delivered by qualified professionals is to be assured and easy access to care when necessary is to be maintained.

However, in 1998, the reality of managed health care in New York State is radically different than the promise.

The New York City Chapter of National Association of Social Workers has developed and implemented the Managed Care Critical Incident Report Project which is designed to track problematic experiences of New York's (city and state) health and mental health consumers and providers and to disseminate the information collected to the public and policy makers to ensure that those covered by public or commercial managed care plans have appropriate, accessible, affordable and accountable health, mental health and dental services. During calendar year 1998, NASW collected data from over 200 health care patients and providers that document problems in SIX CRITICAL AREAS of managed care.

A. Health care decisions are not made by patients and their providers.
B. Appeals related to inappropriate health care decisions are delayed or restricted.
C. Home care services are refused.
D. Access to emergency care is denied.
E. Barriers to care are rising.
F. Continuity of care is disrupted.

A. HEALTH CARE DECISIONS ARE NOT MADE BY PATIENTS AND THEIR PROVIDERS.

Managed care organization (MCO) case managers are hired by a company to review and then approve or deny a plan of care or treatment by telephone, based on protocols established by the MCO. Case managers, without medical training or licensure, function as clerks making medical decisions based on company protocols. Decisions that rely only on diagnosis do not reflect the complexity of illness and treatment options, jeopardizing the patient's health in many instances.

• A patient with advanced head and neck cancer could not swallow as a result of radical neck surgery to remove the cancerous growth. The MCO refused to approve coverage for nutritional supplements for this patient despite continuous calls by the physician over a two week period to obtain approval. The patient was starving to death!

• A hospitalized patient with leukemia and life threateningly low white blood cell and platelet counts was given a new drug (GCSF) to stimulate the quick growth of healthy white blood cells after chemotherapy. GCSF does not, however, effect platelet growth, which then lags behind white blood cell production. The MCO case manager told the physician he must discharge the patient since the white blood count was normal. When the physician explained that the platelet count was still life threatening and the patient could not be discharged, the case manager insisted that the platelets always come up first and that the laboratory results had to be wrong. The physician tried to explain that the effects of GCSF are different, but the case manager refused to change the determination. (The patient stayed in the hospital until a safe discharge could be arranged but neither physician nor hospital was paid for the care.)

• A very depressed patient came to an emergency room after making a suicide attempt. The provider called the MCO to pre-certify a psychiatric admission and was told by the case manager that "We don't pay for self-inflicted problems", and denied approval of hospital care. When asked to give her name, the case manager became indignant, shuffled a few papers as though she were looking something up and after a delay, finally said "Well, maybe this particular person's policy will cover an admission for suicide."

• A social work clinician was treating a suicidal patient and called the patient's MCO to get approval for hospitalization. The MCO's psychiatrist, who had not met the patient, reviewed the case and challenged the need for care. The social worker described the psychiatrist as rigid, detached, aloof and seeking reasons why the patient should not be hospitalized rather than understanding the seriousness of the situation. His manner was offensive. The psychiatrist finally agreed that the patient could be hospitalized for one day for an assessment (not enough time by anyone's standards for antidepressant medication to be effective) leaving the hospital to argue the need for additional in-hospital care to keep the client protected and safe. The hospital would carry the burden of the cost of care if the MCO denied continued care at this level.

• A patient with a chronic condition called cystic acne asked her primary care physician to refer her to her dermatologist who had treated her for this problem before her benefits became managed. The primary care physician refused. The physician appeared to have limited knowledge of this and other medical problems that the patient presented. He mistook a viral stomatitis (virus in the mouth) initially for a bacterial infection, then for herpes. After 2 ½ weeks on ineffective medication and ointments and terrible discomfort when eating, chewing, drinking and swallowing, the patient went back to her old internist who diagnosed and treated the problem immediately. Since the primary care physician refused to give her a referral to her former internist, she was forced to pay out of pocket for the care.

• An MCO patient presented symptoms of heart disease to her primary care physician, who declined to refer her to a heart specialist. The physician told the patient that her problems were emotional and stress related and prescribed aspirin. The patient continued to have chest pains and severe headaches during the next two years and received no work up or referral to address the symptoms. At her own expense, she consulted with a cardiologist who immediately hospitalized her for treatment.

Patients with chronic conditions and complex illnesses often require consultation with a variety of specialists, but many MCO's and primary care physicians under contract to the MCO limit patient access to specialty consultations. Appealing a denial of care or appealing the right to be seen by an appropriate specialist is a time consuming and exhausting exercise for individuals who are coping with the onset of a serious illness or living with the complications of a chronic illness. Patients are unaware or uncertain about how to exercise their appeal rights with the MCO directly.

• A newly enrolled MCO patient with multiple sclerosis was approved for a mobile MRI test. She declined to have the mobile test based on years of treatment by specialists who advised her that the mobile MRI test results are not reliable. She has appealed the decision made by the case manager but weeks have gone by with no response to her appeal.

• The MCO denied physical and occupational therapy benefits to a patient with multiple sclerosis despite justification by her primary care physician and her neurologist that the treatment would benefit her.

• A 14 year old patient was in need of hospital based rehabilitative care and only one facility in the area could meet her particular needs. Despite the physician's request for approval from the MCO, the request was denied. An appeal was made to the medical director and the request was still denied. In addition, the MCO did not recommend or authorize any other alternative. The patient's care was delayed for over two weeks. Eventually, because the physician applied constant pressure on the MCO, the patient was transferred to the rehabilitation facility.

Managed care contracts rarely provide adequate coverage for home care services or medical equipment, which may, in fact, prevent re-hospitalization. The provision of home care services promotes recovery in a less expensive home setting. Patients and their families suffer unnecessarily when patients are re-hospitalized in those situations where hospitalization could be avoided.

• A patient suffered a stroke, was blind and dependent on medications for diabetes. Her physician and social worker requested approval to increase home care services to eight hours per day, four days per week upon hospital discharge to provide necessary care when family members could not be available. The MCO refused to increase the hours of care and case managers were unreachable to discuss the case.

• A patient was discharged home after an acute phase of chronic illness. His MCO would only approve six hours of home care. The patient's condition deteriorated once again and after re-hospitalization he was placed in a "chronic nursing home." He and his family wanted him to return home but lacked the moneys to pay for care themselves. If the patient had not enrolled in the MCO Medicare plan he would have received the services that would have allowed him to remain in his home with his family and it would have been much cheaper for taxpayers.

MCO decisions are less than adequate when the thinking is based on home care as a short term need in an individual's life.

• A patient with a disabling condition made claims for a hospital bed, wheelchair and wheelchair cushion to enable recovery at home. The MCO would allow only $500 of the $1650 cost of a wheelchair and would not cover the hospital bed or wheelchair cushion. The MCO's logic is to rent, rather than buy equipment, on a short term basis until the patient gets better. This is fine if you break your leg, but if you have a permanent disability, you cannot get the equipment supports you need at home.

• A patient purchased a motorized scooter after receiving approval from the primary insurance carrier -- Medicare -- which paid a portion of the cost. The balance of the claim was sent to the MCO who stalled for almost one year with repeated promises to review why a decision was taking so long. The MCO finally denied the claim stating no formal request was made prior to the original purchase. (Medicare, the primary insurer, approved the purchase. It is contrary to the usual manner in which medigap or other secondary insurance works for the MCO to deny a claim in this situation.)

One way MCO's limit access to emergency care is by misleading patients into believing that prior approval from the company is necessary to access coverage for emergency treatment. In fact, the law states that there is an emergency when so assessed in a prudent lay person's judgment. Since all hospitals must, by law, see a patient who presents for emergency treatment, patient care cannot be denied regardless of the patient's ability to pay or whether the hospital is on the patient's MCO network of providers.

• A patient reported she had an extremely bad case of poison ivy to which she is allergic. Her insurance company refused to allow her to go to the Emergency Room at 5 P.M. on a Saturday unless her primary physician (whom she had never seen) approved the necessity of the visit. The physician refused to approve the E.R. visit and prescribed a yeast infection medication. At 1 A.M., the patient called the physician back in extreme pain and a visit was reluctantly approved. The E.R. treated the poison ivy with low dose medication and recommended the patient see a dermatologist to receive steroids because her allergic reactions were so severe. The patient could not go directly to an in-plan dermatologist but was first required to see the primary care physician who stated she was not sure what poison ivy looked like. However, she referred the patient to a dermatologist who treated the patient with steroids and the pain was gone in a matter of hours. However, the patient had experienced four days of unnecessary pain, could hardly walk, could not sleep and missed three days of work.

• A patient with severe asthma had a life threatening asthma attack. Her MCO required her to go to a medical provider several miles from her home rather than approve an emergency room visit at the hospital closest to her home. During the medical crisis, the patient was not in a position to contest the decision. After the episode, patient disenrolled from this plan.

• A patient with chest pains and labored breathing was taken by ambulance to the nearest hospital which was not a hospital on his MCO panel. The MCO refused to pay for the emergency care, even though the patient had no choice of hospital to which he was taken. The MCO paid the emergency room bill only in response to a formal appeal.

Large patient volume, limited provider panels and provider shortages (particularly specialists), long waits for primary and specialty care physician appointments, long waiting room time to be seen on day of appointment, geographic inaccessibility and red tape are growing problems within the MCO delivery system in New York. Some health and mental health providers are opting to drop out of managed care panels due to the red tape and time it takes to resolve treatment approval and billing decisions. There is speculation that red tape is one method that MCOs employ to discourage patients and providers from pursuing just resolutions concerning health and mental health care.

Barrier 1: Limited Choice

• A patient was informed by her MCO that she could have 20 visits with a certified social worker within the MCO network, with a co?pay of $10 per visit. Following the 20 visits, the patient would need to pay 50% of any additional visits. The MCO then denied the 20 visits and only allowed 9. The 50% threshold did not kick in which meant that the patient was required to pay 100% for her remaining mental health visits.

• Patients who must enroll in an MCO as part of their employment but who have HIV/AIDS disease are assigned to or required to choose primary care physicians from the MCO's panel of providers without regard to physicians expertise or experience with AIDS. Despite this lack of experience, the primary care physician limits referrals to specialists in HIV/AIDS care, i.e. infectious disease specialists, neurologists, dermatologists.

• An MCO marketed its plan in a shopping center and informed a potential enrollee that they were affiliated with his medical clinic and that he should sign up. However, the MCO assigned him to a provider who is not part of the medical clinic. The patient has HIV and is very concerned about how this will affect his medical care. (Note that this experience also illustrates the patient's lack of knowledge of the right to disenroll.)

Capacity affects both the availability of first appointments and appointments with providers already known to patients.

• An MCO patient reports she waited three months for an appointment with a primary care physician which was then canceled by mail. Another patient reports a nine week wait for an appointment with her gynecologist for an annual exam.

• Choice in gynecological care is an important issue for many women. A major MCO in Manhattan provides a very limited choice of female gynecologists throughout the borough.

• A patient with an acute leg injury reports that her MCO required her to see an orthopedist that was in plan and could not give her an appointment for two weeks. Her primary care physician finally intervened to get her an appointment before her condition worsened.

• A patient and his wife saw a clinical social worker concerning difficulties with their sons. One was in trouble with drugs and the other was dropping out of school. The MCO would not approve any additional sessions for these parents unless the father agreed to a medication consultation for himself. The MCO based this treatment plan on the father's history of one major depressive episode many years ago. The father was cooperative though he and the treating mental health provider agreed that he was not experiencing depression and did not need medication. None of the 15 consulting psychiatrists on the MCO's panel would give the patient an appointment for a single session consultation without his stating in advance he would be an ongoing medication patient.

• A 17 year old boy, a graduating high school senior, suffered from a sudden manic episode, was diagnosed with manic depressive illness and was hospitalized for six weeks. The MCO refused to pay for the out of network day hospital nearest the family's home but approved a day hospital 100 blocks away. The patient was unable to travel to the facility due to his mental status and medication side effects of paranoia, inappropriate behavior and symptoms of diabetes insipidus as an adverse effect of lithium. The only other option that was allowed by the MCO was an inpatient stay at a hospital in Pennsylvania.

• A New York City resident had contracted a serious infection while in Columbus, Ohio. She was denied approval for emergency room care by her MCO so she went to see a private physician. He charged $99 and upon appeal, the MCO agreed to pay for the visit. That decision was made in April 1997 and by June 1998, the bill had still not been paid.
• Emergency services were obtained for a patient at a county hospital that was close to the patient's home but the MCO refused to pay because they had not pre-authorized the care. In addition, laboratory work was done on two occasions and the MCO denied coverage stating that the lab used was out of network. However, this was the only laboratory serving the Catskill area. The MCO wanted the patient to use a New York City laboratory two hours away.

Unnecessarily complex and confusing bureaucratic rules and regulations discourage and exhaust patients and their families; and, in some instances patients cease their pursuit of needed medical care. "Red tape" negatively effects providers as well, often resulting in providers leaving network panels. Provider departures reduce network capacity and patient choice.

• A patient came in tears to her social worker because she could not reach her MCO primary care physician. No one answered the telephone. The social worker tried calling at least 10 times, waiting on hold until cut off. The patient's adult daughter also tried calling. Eventually the social worker tracked down the primary care physician from the phone book and called his private office. His receptionist provided another phone number at the clinic, which finally led to a clinic staff person who could make an appointment for the patient.

• A MCO did not recognize a patient's dual diagnosis of mental illness and substance abuse. They limited approved visits to 20 per year ignoring the state mandate of 60 visits per year for the treatment of substance abuse.

• A mental health provider is still owed money for client treatment by an MCO after 1 ½ years and after repeated requests for information, lost paperwork, and resubmission of claims information.

• An MCO repeatedly sent payments and tax information to an address that a mental health provider had never submitted. After six telephone calls, each lasting 1 to 1 3/4 hours (waiting, being transferred endlessly to persons who do not know how to change an address) the address has yet to be corrected. A source within the company, who requested anonymity, said this was a repeated problem for out of network providers and that the system could not change addresses for out of network providers. This is a form of harassment to discourage out of network providers from submitting claims.

Care is disrupted when the MCO or MCO assigned physician changes a treatment plan or refuses continuation of treatment by health or mental health providers who have treated a patient under a previous insurance plan. Marketing abuses continue to be reported whereby patients are not informed that their choice of provider will be limited or changed when they enroll in a particular company.

• A 75 year old woman with a 25 year relationship with a provider and the provider's hospital needed emergency hospitalization for a chronic psychiatric problem. The MCO wanted the patient transferred to their facility. The patient stated that she was never told by the MCO during the marketing and enrollment process that her long term psychiatric care relationships would have to be terminated.

• A patient's mental health benefits were subcontracted to another MCO, who approved only five outpatient visits. The therapist advised the MCO case manager that this patient needed more than five visits and had been in treatment with the therapist for four years. The provider was told that it was because of therapists like her that companies need to closely review and limit treatment.

• A patient's assigned GYN physician moved and gave no notice to patients. However, the MCO transferred the files to another doctor without patient's consent.

• An MCO decided to reduce the size of their provider panel and dropped several mental health providers without explanation. Current patients were transferred to other providers. Among the patients who were affected by this change was a nine year old boy who had attempted to commit suicide by hanging himself in school. The mental health provider who was dropped from the panel had been working with this child for 1 ½ years. The MCO refused to allow the therapist to continue treatment.

Managed health and mental health care is fast becoming a major public health issue as patients and providers struggle with the six critical areas identified by the Critical Incident Report Project. These problem areas restrict access and quality of care, create great emotional stress, and compromise health and mental health for patients, their families, and their communities.

It is the recommendation of NASW that the New York State Departments of Health and Insurance must establish effective regulatory systems to hold managed care organizations accountable according the State's 1996 Managed Care Bill of Rights.

Specifically, it is imperative that managed care organizations be monitored in the following areas that are addressed in the Managed Care Bill of Rights.

1. Managed care organizations must inform patients, providers, and the public of their rights and responsibilities.

2. Managed care organizations must establish and maintain an immediate response system for patients and providers who question decisions on access and appropriateness of their care plan. Utilization review, appeals and grievances must be handled in a timely manner as spelled out by the law.

3. Managed care organizations must be held accountable for providing accurate marketing information including the fact that emergency care does not require prior approval by the company.

   The following recommendations, while not addressed in the 1996 legislation, are necessary to protect New Yorkers' right to access and appropriate health and mental health care.

4. The newly mandated independent review authority must be established and publicized.

5. A person with a serious, complex, or unusual illness must have access to recognized specialists who may or may not be providers in the patient's network.

6. Continuity of care must be maintained through the consumer's right to remain with their health or mental health provider should their coverage change.

7. Social services under professional social work administration must be available to address the psycho-social components of medical and psychiatric conditions.

The Managed Care Critical Incident Report Project was launched by the New York City Chapter, National Association of Social Workers in January 1998. The expressed purpose of the Project is to monitor the managed care industry's adherence to existing law and identify additional areas requiring monitoring. The Project describes experiences under commercial, Medicaid, or Medicare managed health/mental health systems.

Towards this end, problem incidents are systematically collected from consumers, providers and advocates. The analysis of such collected data, identifying problem areas of access to and quality of managed care, is disseminated through publications, testimony at government hearings, meetings, and press conferences with elected officials, State Department of Health and Department of Insurance, and the Federal Health Care Financing Administration.

Critical incidents are reported on a written form that may be returned anonymously. These bilingual (English/Spanish) forms have been distributed to consumer groups, advocacy groups, and individual and institutional providers. Project members have promoted the use of the form at legislation town meetings, presentations to provider groups, and through the media.

The Project will continue to disseminate forms and encourage their return for through the completed implementation phase of Medicaid managed care in New York City. This Project is in keeping with the National Association of Social Workers commitment to health care as a basic right.

Project Members
Gerald Beallor	Barbara Brenner
Mona Dreier	Terry Mizrahi
Alicia C. Sainer	Penny J. Schwartz
Dava Weinstein

Student Interns
Elizabeth Campos	Kate Graves	Gary Parker
Rebecca Kurti	Mary Hernandez
Sabrina Ramos	Mel Tapino

We would like to thank the following organizations for their support of the CIR Project:

• Little Sisters of the Assumption
• SEIU-1199

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