National Association of Social Workers, New York City Chapter
(October 2000)

Executive Summary

The New York City Chapter, National Association of Social Workers (NASW) created the Critical Incident Report (CIR) Project in 1998. Since then it has been involved in collecting information about the impact of managed care on patients and their providers. Its goal is to learn when access to care and/or treatment does not go smoothly.

The Project issued its first report, How Healthy Is Managed Care? in February 1999. Six problem areas identified were:

1. health care decisions are not made by patients and their providers,
2. appeals related to inappropriate health care decisions are delayed or restricted,
3. home care services are refused,
4. access to emergency care is denied,
5. barriers to care are rising, and,
6. continuity of care is disrupted.

Anyone knowledgeable about managed care issues and the law recognizes immediately that the State's Managed Care Bill of Rights is intended to address many problems identified in this report. Medicaid recipients whose benefits are managed have additional protections under federal law.

Based on findings, the Project is making the following recommendations. Recommendation 1 calls for intensive public education of the law to consumers, health professionals, and advocates. The New York City Managed Care Consumer Assistance Project (MCCAP) of the Community Service Society is a model of public education efforts that could be replicated statewide. MCCAP subcontracts with community agencies throughout New York City to provide information, advocacy, and referral for persons needing assistance negotiating their managed care plans. It is vital to educate the entire population whose care is managed, whether source of insurance is commercial or government funded.

Public education must orient both health consumers and their providers to the right to question MCO decisions. It is very telling that the majority of persons returning CIR forms did not formally question the MCO decision. Seventy four percent of those who did had a favorable decision, underscoring the importance of questioning the MCO. Persons receiving mental health care challenged MCO decisions at a third the rate of persons receiving other health care. It appears that the stigma associated with mental health and illness diminishes the likelihood of people challenging MCO decisions about their care.

Recommendation 2 calls for the State Departments of Health and of Insurance to further develop mechanisms for enforcing existing New York State managed care laws. An effective, far reaching program of public accountability is the necessary partner to public education. Such a system would:

• hold MCOs responsible for informing patients, providers and the public of their rights and responsibilities according to the law;
• hold MCOs responsible for an immediate response system when patients require immediate care;
• hold MCOs responsible for accurate marketing information.

These recommendations are necessary components of a publicly accountable health care system. NASW will continue to actively support the goal of a publicly accountable system as well as the role of social workers in health care as advocates, community activists, and primary mental health care professionals.

Introduction

The New York City Chapter of the National Association of Social Workers' (NASW) Managed Care Critical Incident Report (CIR) Project was initiated to track problematic experiences of New York's (city and state) health and mental health consumers and providers with managed care. This second report summarizes findings to date and offers recommendations for systemic changes.

The Project encourages consumer, provider, and advocate participation via the completion of the CIR Project reporting form that systematically documents barriers to quality care and adequate service provision. The cumulative data informs the public and policy makers of issues requiring attention and holds managed care organizations (MCOs) accountable for their management of health and mental health care services.

NASW has collected over 300 CIR forms since 1998; about 50% from health care consumers and 50% from professionals and advocates. The vast majority of provider returns are from social workers. The high social work response reflects NASW's role in educating social workers to be effective health care advocates for themselves and their clients.

NASW issued its preliminary report, How Healthy Is Managed Care?, in February 1999. It documented problems from the first 200 returns and identified six primary problem areas related to managed care:

1. health care decisions are not made by patients and their providers,
2. appeals related to inappropriate health care decisions are delayed or restricted,
3. home care services are refused,
4. access to emergency care is denied,
5. barriers to care are rising, and,
6. continuity of care is disrupted.

Assessing the effects of managed care on health and mental health remains as important today as it was at the inception of the CIR Project. A thorough assessment includes weighing the benefits of this system, how consumer rights and protections are functioning, and the potential costs when profit motives take precedence over the basic right to health, mental health and substance abuse care. This is particularly important as numbers of Medicaid insured New Yorkers are being mandated into managed care plans.

In theory, managed care promises coordinated and comprehensive health and mental health services that are both affordable and accessible. The benefits of preventive screenings and positive health promotion are not disputed. However, health care under the present managed care system suffers from a significant lack of cooperation between all parties involved. This Report documents the price consumers and providers pay when cooperation is diminished by bureaucratic red tape common to the for profit managed health care industry.

To date, NASW data (see Table I, page 14) reveal a greater incidence of problems among respondents in commercial MCOs as compared to those whose source of health insurance is public and managed (Medicaid, Medicare, Child Health Plus). This can be largely attributed to the years of data collection. The CIR Project was launched with the present CIR form in January 1998. Mandated Medicaid managed care enrollment began in 1999. Although Table 1 reflects significant findings, it will be important for all parties to follow trends over the coming years as Medicaid insured persons are mandated to enroll in managed care plans.

NASW found that both consumers and health care professionals are often uninformed or misinformed about managed care. Public education concerning the 1996 New York State Managed Care Consumers' Bill of Rights and the additional 1999 legislation establishing external review of MCO decisions is lacking, as are mechanisms for utilization of these rights and protections.

This Report is in keeping with NASW's commitment to health care as a right rather than a market place commodity. Personal testimony gathered from the narrative portion of the CIR report form will be used to highlight relevant emerging themes. We believe the Report does not fully reflect consumer and professional experience. Many consumers and professionals are fearful of complaining about an MCO experience. The consumer fears losing benefits and the professional fears losing a livelihood.

The critical concerns highlighted and discussed in this Report are grouped in the same order as on the CIR reporting form. Consumers are faced with problems in enrollment/disenrollment, as well as access to care, quality of care, and reimbursement issues. Health professionals are faced with quality of care and ethical issues as well as systems related issues. Table 2, page 15, is a breakdown of problems reported by type of care defined as health or mental health/substance abuse care.

PROFITS OVER PEOPLE: Enrollment Problems

Difficulties and obstacles are encountered from beginning to end of the consumer's journey through the managed care system. Managed care is not simple. The need for every MCO to clearly outline its service package is crucial (and required by law) to ensure that consumers choosing a health care plan make the decision that best suits their individual and family needs. Unfortunately, consumer needs seem to have low priority. Consumers often end up both confused and frustrated, potentially paying with their health as they learn what their health care benefits are and how they are managed. Consumers consistently reported being uninformed or misinformed about their MCO. Specifically, MCOs inadequately described consumer rights, failing to present or explain appeals and grievance procedures, and failing to notify consumers of system changes.

More than 40% of CIR consumer respondents reported having some problem with enrollment or disenrollment. Misleading MCO marketing was reported by 20% of the consumers. Health care should not be reduced to marketing tactics that seduce consumers into selecting coverage they do not understand and may not meet their needs.

Another 20% of the consumers reported that their benefit package was not fully explained to them at the time of enrollment. Some respondents documented blatant efforts at enrolling persons exempt from Medicaid managed care. A consumer with a chronic illness reported the following experience:

The managed care company was at the shopping center. They told me my medical clinic was affiliated with them and I should sign up. I now find out that they assigned me to another doctor who is not part of my clinic. I am an AIDS patient and this has seriously jeopardized my medical care.

The person from the company told me that by the end of the year all Medicaid patients would need to be enrolled in a managed care program and if I didn't sign up right then, I may not be able to sign up at all.

I signed up with a company when they told me my daughter's therapist (mental health care) and pediatrician were in their plan. When I went to the doctor, he said they did not accept the plan. I have been trying to disenroll for the past three months. The company still hasn't sent the forms I need to do that.

Once the consumer has overcome the hurdles of enrollment, problems often persist. Managed care promises careful and efficient management of health and mental health services, and yet two thirds of consumer respondents reported some problem related to accessing care.

Care hindered due to unanswered phones or delayed by long waits for appointments were documented repeatedly by both consumer and health professional respondents. Taken individually, it is easy to brush off an occasional unanswered phone, but with over a quarter of the CIR respondents reporting that they could not get through to their MCO, the issue is magnified to an entirely different and critical level.

I (consumer) spend a long time waiting on the phone every single time I call - my provider has the same problem.

I had been calling the MCO each day for three days trying to get through to a live person. In the meantime, the client who was waiting for reauthorization of treatment, took an overdose of pills and was hospitalized.

I have been seeing a psychiatrist for medication for depression and anxiety. He severed ties with my insurance company. My social worker got the names of four other psychiatrists from the company. I called all four. None were accepting any managed care patients. I called my company. They didn't return my call. My social worker called - no more psychiatrists. I guess I have to pay privately.

My wife was diagnosed to have a neurological disorder otherwise called "Shy Drager" syndrome. Her …treatment program had to stop because physical therapy and homecare service … were denied by the insurance company. They determined that my wife's case is "chronic" …and care is custodial rather than skilled. I am presently appealing the case…so that much needed muscular therapy would be again resumed. Otherwise atrophy will set in and rehabilitation treatments will be too late.

None of the MS specialists are on my plan. I called the plan and they said that I didn't need a specialist, any neurologist would do. They are wrong. I go anyway and pay for it myself.

In order to hospitalize a suicidal client I had to speak with a psychiatrist at the MCO. He was rigid, detached, aloof, appearing to seek reasons why the client shouldn't be hospitalized rather than understanding the seriousness of the situation. His manner was offensive ending in his statement that I was just being sarcastic when I thanked him for something he had said. He agreed that the client could be hospitalized for one day for an assessment and then the hospital would be left to fight to keep the client there.

MANAGED CARE EQUALS DAMAGED CARE: Quality of Care Issues

Having negotiated the bureaucracy and logistics of accessing health/mental health care professionals, the consumer is then confronted with MCO management of care. Thirty percent of consumer respondents reported compromised care when companies disagreed with professionals about the need for or type of care, did not approve prescribed treatment, or denied coverage of certain medications. Respondents repeatedly reported that the MCO primary care physician was not knowledgeable in the area for which the consumer needed care.

The MCO doctor was not a specialist in the AIDS virus and therefore was not up to date with the latest information. Also, always put me off when I needed referrals for specialists. My managed care equals damaged care.

My plan will not pay for customized HRT prescribed by my gynecologist. They will only cover generic medicine which causes me to experience a lot of side effects.

I have AIDS. I was refused a refill on an open prescription. There is a break in my treatment while my doctor justifies its use.

I prescribed a time release form of a medication for a patient having difficulty adhering to a schedule of multiple daily doses. The MCO refused to authorize this medication, stating that it only covered the standard form of the drug. I called the pharmaceutical company directly and learned that the cost of the drug in time release form was exactly the same as the original form. The MCO's policy on this drug had nothing to do with what was best for the patient.

I have neurological problems my PCP does not fully understand, yet I must still get my PCP to give me a referral to my regular neurologist. I tried to bypass this, but no way. The MCO sends me running around for no good reason.

Managed care was touted as the insurance industry's response to the threat of government regulation of health care. The managed care industry promises affordable health care for employer or consumer purchaser. When these promises are broken, for any of the previously cited reasons, consumers are often forced to pay the price out of their own pockets.

Timely reimbursement to which the consumer is entitled should be standard. Repeated submission of documents for reimbursement often causes great frustration. Heightened tensions between medical consumers, health care professionals and MCOs lead to increased inefficiency and miscommunication. Almost 15% reported not being reimbursed for covered services which they had paid for at time of service.

No matter how many times they requested I fax my statements of services I paid for (at least 7 or 8 times), the insurance company reported not receiving my records and it's now 8 plus months I'm waiting for reimbursement. They also came up with one ridiculous stalling reason after another - requesting information they already had.

I had an accident last summer which resulted in a massive hematoma on my hip. I was unable to walk and fainted due to loss of blood in my system. I went to the emergency room for an x-ray to insure no bones had been broken in my hip. My insurance company fought with me for 7 months over paying my claim …I had to convince the hospital to … send the entire record to my MCO until it was finally resolved. I spent hours on the phone and was receiving letters threatening to turn my case over to a collection agency.

Initially I was given a contact person, but soon that person's telephone line was being answered by voice mail. I never received a return call. … It has been 9-10 months. The MCO has told me that indeed they applied double the amount of my deductible but they never paid what was owed or the balance of the erred previous payments. It appears they have closed my case. I fax and fax concise explanations of monies they owe me and receive no acknowledgments or payments.

Consumers are not the only ones who suffer when managed care fails to follow through on its promises. Health/mental health care professionals are in the difficult position of relying on MCOs to coordinate services in a productive and efficient way that does not disrupt patient care. Roles may be blurred and motives not clearly stated when MCOs have conflicting agendas to both manage costs and manage care. This all too often creates an atmosphere of mistrust that becomes unproductive, at times dangerous, and evokes serious ethical questions.

Nearly a quarter of all health professionals and advocates reported problems with care related issues. Both health and mental health professionals were concerned about confidentiality.

I (social worker) received treatment report forms containing confidential information about a person who was not my client.

The wrong managed care company was demanding clinical updates on the patient violating his confidentiality. This patient had a different health plan.

I participated in a telephone review about my client with the MCO reviewer. The reviewer decided to alter the diagnosis and downgrade it. He stated that due to little change in the client's GAF (Global Assessment of Functioning) Scale, he was going to approve only one more week of treatment.

A MCO denied bone marrow transplant on the grounds that it would be ineffective …Reversal of the company's position (happened) only after intervention by a city official who was a relative of the patient.

A patient's mental health benefits were subcontracted to another MCO, who approved only 5 outpatient visits. When I advised the case manager that this patient needed more than 5 visits and had been in treatment with me for over four years, I was informed that it is because of therapists like me that companies need to keep close review of treatment.

HITTING A BRICK WALL: Systems Related Issues

Health care professionals report many of the same systems problems as consumers. Nearly 15% of providers reported that they could not get through to the MCO on the telephone. The same delays in payment or non payment that frustrate consumers confronted professionals as well.

There was only one phone number to call and I tried for three days, an hour each time, to get through to find out why my claims for two patients were denied. When I finally got through, they stated it was because I hadn't pre-certified, which I had.

I learned indirectly through a patient … that the MCO had taken me out of their provider panel. One of my patients whom I would have to transfer was a 9-year old boy who had tried to commit suicide by hanging himself in school. I had been working with this child 1-1/2 years. The MCO told me I would have to transfer this youngster to an approved therapist and under no circumstances could I continue to treat him until termination. I did not know I had been dropped.

I was informed by a patient who had just switched providers that I had been reclassified as inactive by the MCO. I was given no warning of this change of status.

The problems highlighted in this Report do no exist independently of one another. In fact, at the points where they intersect, problems intensify and contradictions emerge that leave consumers at a loss. For example, some MCOs insisted that consumers stay within a certain geographic area, limiting their choice of provider while others sent consumers far away from their home.

The MCO agreed that if my primary care provider gave me a referral to a hematologist in their plan they would pay. When I did get a referral to an in-plan hematologist at another hospital further away, the MCO did not approve it stating I could be cared for by a local hematologist at another MCO facility located near my home. I explained to the MCO that that hematologist was NOT familiar or experienced with my complicated and rare disease.

I have asthma, very severe asthma. I live at 131st and Amsterdam Avenue. I had a severe, life-threatening asthma attack and my HMO required I go to their hospital further away then the one in my neighborhood. I almost died. Never again, no way. I disenrolled.

I had to take my daughter from the doctor's office in the Bronx and travel to a laboratory in Yonkers to get tests done because the HMO demanded it even though the doctor could have done the test in his office.

This report is an evaluation of the cumulative data from the beginning of the Project to the present. This extended documentation demonstrates that the six problem areas noted in the February 1999 report persist today. Although mandated managed Medicaid enrollment did not begin in New York City for a full year after the start of the Project, sufficient data has been collected to document that all consumers are experiencing these problems regardless of source of insurance.

Anyone knowledgeable about managed care issues and the law recognizes immediately that the State's Managed Care Bill of Rights is intended to address many problems identified in this report. Medicaid recipients whose benefits are managed have additional protections under federal law.

Based on findings, the Project is making the following recommendations. Recommendation 1 calls for intensive public education of the law to consumers, health professionals, and advocates. The New York City Managed Care Consumer Assistance Project (MCCAP) of the Community Service Society is a model of public education efforts that could be replicated statewide. MCCAP subcontracts with community agencies throughout New York City to provide information, advocacy, and referral for persons needing assistance negotiating their managed care plans. It is vital to educate the entire population whose care is managed, whether source of insurance is commercial or government funded.

Public education must orient both health consumers and their providers to the right to question MCO decisions. It is very telling that the majority of persons returning CIR forms did not formally question the MCO decision.

Seventy four percent of those who did had a favorable decision, underscoring the importance of questioning the MCO. Persons receiving mental health care challenged MCO decisions at a third the rate of persons receiving other health care. It appears that the stigma associated with mental health and illness diminishes the likelihood of people challenging MCO decisions about their care.

Recommendation 2 calls for the State Departments of Health and of Insurance to further develop mechanisms for enforcing existing New York State managed care laws. An effective, far reaching program of public accountability is the necessary partner to public education. Such a system would:

• hold MCOs responsible for informing patients, providers and the public of their rights and responsibilities according to the law;
• hold MCOs responsible for an immediate response system when patients require immediate care;
• hold MCOs responsible for accurate marketing information.

These recommendations are necessary components of a publicly accountable health care system. NASW will continue to actively support the goal of a publicly accountable system as well as the role of social workers in health care as advocates, community activists, and primary mental health care professionals.

Managed Care Critical Incident Report Project

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, professional health/mental health 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 town meetings, presentations to provider groups and through the media.

The Project will continue to disseminate forms and encourage their return 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.