RRTC ON MANAGED HEALTH CARE AND DISABILITY

Managed Care Tool Kit:
A Primer for the Independent Living Field

Pamela J. Dautel
Mary Faithfull
A Joint Project of NRH-CHDR and ILRU

INTRODUCTION
CHAPTER I - MEDICAID IS
CHAPTER II - HOW HAS HEALTH CARE CHANGED?
CHAPTER III - ROLE OF INDEPENDENT LIVING CENTERS IN MANAGED CARE
CHAPTER IV - UNTANGLING THE MEDICAID MANAGED CARE ENROLLMENT MAZE
CHAPTER V - OTHER ROLES FOR ILCs AND DISABILITIES ORGANIZATIONS
CHAPTER VI - UNDERSTANDING MEDICAID RECIPIENTS
APPENDIX
Web Site Addresses
Glossary
Health, Options, Plans (HOP)

INTRODUCTION
It is no secret to anyone that this nation has been undergoing a health care revolution. For the past ten years, there has been an accelerating move in health care away from the traditional fee-for- service model to a managed care model of service. This change has come about as a result of trying to control rapidly escalating health care costs. Both the public and private sectors have embraced managed care because it seems to make health care costs more predictable and controllable. In many cases, managed care has done just that.

This health care revolution is affecting more and more people. It affects private health insurance, typically a workplace benefit, and public insurance like Medicaid and Medicare. However, it has had a disparate effect on people with disabilities. This is because managed care is built around prevention and early detection of chronic health (care) conditions or diseases. In many cases it works well for healthy people that do not have chronic conditions or need specialized services. However, many people with disabilities do not fit the managed care model well. Many people with disabilities need access to specialists, specialized services, and customized equipment.

Independent living centers (ILCs) and local and statewide disability organizations have a unique and important role to play in educating consumers about managed care and their rights to services. For many ILCs, health care is a new arena. However, for people with disabilities, having and maintaining adequate health care is essential to maintaining independence and well being. ILCs and other disability organizations have a vital role in outreach to people with disabilities about changes in health care, managed care, how to choose a managed care plan, how to troubleshoot problems, and finally how to appeal a managed care provider's decision.

This guidebook focuses on Medicaid managed care and can be used in conjunction with the Health, Options, Plans (HOP) brochure found in the Appendix. The HOP brochure is an easy to follow, step-by-step approach that leads consumers through the process of choosing a health care plan.

Medicaid managed care is sweeping the nation. Forty-eight states and the District of Columbia either require or allow some or all of their Medicaid recipients to enroll in some form of managed care. As of June 1998, more than 16 million people or 53.64 percent of Medicaid beneficiaries were enrolled in managed care plans.

People who are disabled and not elderly are eligible to receive Medicaid benefits because they meet the federal income requirements and a national standard for disability. Another way people with disabilities qualify is because their medical expenses are so high that they "spend down" enough to meet the state's medically needy standard. As of January, 1999 there were about 1.6 million Medicaid beneficiaries with disabilities in managed care.

CHAPTER I: MEDICAID IS

Federal-State Program
Health Care for People who are Poor/Low Income
Long Term Care Services

What does Medicaid cover?

Acute Care

Medical Benefits to Treat Diseases or Medical Conditions
Focuses on Curing Diseases/Problems
Services Covered Include

• Doctors
• Medical specialists
• Lab & X-ray
• Hospitals

Long Term Care Services (May or may not be a part of managed care)

Care for Chronic (Ongoing) Conditions
Focuses on Maintaining or Improving Functional Abilities
Service Examples:

• Attendant Services
• Day Activity and Health
• Home Modifications

CHAPTER II: How Has Health Care Changed?

. . . Managed care is a horse of a different color. . .

Fee for Service Health Care (typically insurance provided as a work place benefit)

Managed care is regulated health care. Remember the "old days" when the consumer went to any doctor that accepted his/her insurance? Under the fee-for-service system, the consumer went directly to the doctor, paid for the services, filed the necessary paperwork with the insurance company and was directly reimbursed by the insurance company. In a sense, in the fee for service system, the consumer was regulating his or her health care and was making the decisions about where and how he or she got that care.

Traditional Medicaid

In traditional Medicaid, the consumer can go to any doctor or provider that accepts Medicaid for payment. Sometimes it was difficult to find doctors or providers that accept Medicaid. However, in recent years, the number of physicians/providers accepting Medicaid seems to be increasing. The consumer directly controls the decisions about where and how health care is received.

Managed Care

Managed care is a horse of a different color. In this system, the insurance company, usually called a Health Maintenance Organization (HMO), acts as a "middleman" between the consumer and health care services. The HMO oversees and regulates health care. This is done to try and reduce health care costs by eliminating unnecessary or ineffective procedures. The HMO forms a health care network by contracting with doctors and health care providers and uses that network to provide all covered services.

In the managed care model, medical services are accessed through a Primary Care Physician (PCP). The PCP is usually a family doctor or internist, although for children a PCP may be a pediatrician. PCPs act as gatekeepers or entry points and make referrals he or she decides are medically necessary. Upon signing up with an HMO the consumer must choose a PCP. In most managed care plans, the consumer cannot directly go to specialists unless he or she is willing to pay for the expense. The PCP must make the referral or the HMO does not have to pay. The consumer does not file any paperwork with the insurance company. The services at the doctor's office are either free or the consumer is charged a small co-payment.

Another option for Medicaid managed care recipients in some states is called the Primary Care Case Management (PCCM) model. In the PCCM model the consumer chooses a doctor from the PCCM network. That doctor coordinates the care for the consumer and serves as the gatekeeper to specialists and other providers. One big difference in this model is that consumers can access any specialist willing to accept Medicaid for payment.

In fee-for-service health care:

• the consumers are responsible for managing his or her own health care
• the consumer goes directly to the doctor or other health care specialists
• the consumer directly pays for services and is reimbursed by the insurance company
• the consumer files the paperwork with the insurance company

In traditional Medicaid:

• the consumers are responsible for managing his or her own health care
• the consumer can go to any doctor/provider that accepts Medicaid
• no out of pocket expenses

In managed care:

• the consumer chooses a PCP and they coordinate health care
• the PCP must refer the consumer for special tests or to specialists
• other than a possible small co-payment, the consumer does not pay for health care services
• the consumer does not file any paperwork

. . . There is a special issue of concern. People with disabilities don't easily fit into the managed care model . . .

Is Managed Care Better?

The answer to that sixty four million-dollar question is, it depends. Generally speaking managed care covers routine and preventive health care (immunizations, routine physicals, prenatal care, etc.). In traditional Medicaid the covered services vary. Each state has to provide the same core services, but states can elect to cover additional services as part of their Medicaid State Plans. Under the old fee-for-service system consumers had to directly pay for health care and get reimbursed at a later date. Many consumers could not pay the up front money and so might not seek medical care. Traditional Medicaid did not have the out-of-pocket expense problem, but it was often difficult to find providers willing to accept Medicaid as payment, and again the services available vary among the states. Some states offer rather generous coverage while other states provide the bare minimum. Also, benefits and services may be available in Medicaid managed care that are not available in traditional Medicaid. Managed care does eliminate the paperwork hassle and significantly reduces out-of-pocket expenses. The flip side is that managed care limits the providers you can use to the providers available in a network. The HMO can deny services believed to be not "medically necessary". Finally, there is a special issue of concern. People with disabilities don't easily fit into the managed care model. For many people with disabilities, the issue is not preventing or curing the disability. It is about medically managing the disability, and helping the consumer achieve as independent a lifestyle as possible, given their medical condition. Many people with disabilities see specialists frequently. Having to access specialists via the PCP and referral represents a significant change, and may prove to be a barrier to services. Further, there is an added complication. The specialist or care provider the consumer has been seeing and trust, may not be a member of the provider network used by the chosen health care plan. When a consumer receives services from several health care providers, the dilemma is often how to maintain a working system if all providers are not in the HMO network. Frequently, it is impossible and the consumer is forced to choose the HMO that has most of the providers or the most essential provider or specialist.

Another issue concerns the composition of the provider networks. HMOs believe that as long as they have a variety of health care specialists they have covered their bases and are providing a good service. There is the belief that, for example, a urologist is a urologist. Often, the specialized practices that some doctors develop is overlooked. To someone with a spinal cord injury, not just any urologist will do; a urologist that has developed a practice treating people with spinal cord injuries is vastly preferred. Many people with disabilities rely on specialists with specialized knowledge about their disability. One criticism of HMOs is that their networks may lack providers experienced in working with people with disabilities. Many consumers who have the option of the PCCM model of managed care choose it because in many cases it allows consumers to see any specialist or provider that accepts Medicaid as payment.

Up side of managed care (HMOs):

• usually covers routine and preventive health services
• easier to manage, no paperwork
• reduced or no out-of-pocket expenses
• PCP looks at the whole person and refers if additional services are needed

Down side of managed care (HMOs):

• have to get a referral from PCP to see specialists
• providers are limited to those in the network
• issue of medical necessity
• networks may not have providers experienced in working with disabling conditions

CHAPTER III Role of Independent Living Centers in Managed Care

At best this is a confusing process for consumers. For better or worse, consumers knew what to expect in the fee-for-service and traditional Medicaid models of health care. Now all the rules have changed. There is a new set of hoops to be learned and mastered. Independent living centers can offer information about managed care, educate consumers about the enrollment process and the choices available, and inform consumers about their right to appeal a decision or change their managed care provider. Also, the independent living center is in a unique position to learn first hand from consumers what is working and what is lacking in managed care. Many states with Medicaid managed care have statewide or regional advisory councils that include consumer and advocate representation. Center staff needs to be involved in managed care advisory committees and ensure that consumers' experiences are shared with policy makers.

Educating Consumers About What to Do All Along the Way

For starters, there is the issue of enrollment, understanding the choices, and the consequences for failing to make a choice. Then, after enrollment, there are issues about what to do if medical services are denied or you can't get to the specialist you need. It is important that consumers understand their right to change PCPs. Most Medicaid managed care consumers can vote with their feet and change to another HMO. There is also the right to a Medicaid fair hearing and the option of contacting the State Board of Insurance. Each of these are valid remedies to be considered depending on the situation.

. . . For better or worse, consumers knew what to expect in the fee-for-service and traditional Medicaid models of health care. Now all the rules have changed. . .

Most Everything You Have Always Wanted to Know About Enrolling in Medicaid Managed Care

Enrolling in Medicaid managed care can be a terrifying process. Typically, consumers receive thick packets in the mail from the enrollment broker. The enrollment broker is the company the state contracts with to handle getting consumers signed up on the managed care plans. Enrolling in Medicaid managed care may be mandatory (no choice, sign up for it or be defaulted into a plan) or voluntary (choose to sign up or stay in traditional Medicaid). Usually consumers have a choice of at least two plans. Some states also have the PCCM model of managed care. The enrollment packet contains information about the managed care plans and their provider networks. There is also information about the process to get enrolled, numbers to call to enroll over the phone, or how to enroll by mail. Information about enrollment deadlines, and consequences for not enrolling will be included too. Typically, if enrollment is mandatory, and the consumer does not choose a managed care plan and PCP by the deadline, the state will assign the consumer to a plan and a PCP. This is called auto-assignment or being defaulted into a plan.

Voluntary vs. Mandatory

This is the first decision. It should be clearly stated in the materials from either the state or the enrollment broker if enrollment is a voluntary option. When considering voluntarily enrolling, the consumer needs to think about the possible advantages of managed care like routine medical care with minimum hassle and out-of-pocket expenses. Managed care may also offer some special incentives called value added services that will not be available unless the consumer enrolls in managed care. Value added services may not be available if the PCCM model of managed care is chosen.

Examples of Value Added Services may include:

• dental services including routine exams, cleaning, and some dental work
• vision services including routine exams and eyeglasses
• improved prescription benefits

Given this information, the consumer needs to consider their health care needs, use of specialists or providers, and personal preferences.

Things to Consider when Choosing a Medicaid Managed Care Plan

All the enrollment information can be confusing. The consumer's top priority is to find out where his/her doctors and providers are in this maze of information. The managed care plan network directories can be arranged in different ways. Some provider networks are listed alphabetically, some by zip code, or specialty. This makes it difficult for the consumer to directly compare provider networks across plans. Further, managed care networks are constantly being revised and updated. Physicians and providers are being added and deleted all the time. So the information in the membership directories is often out of date.

. . . Another issue concerns the composition of the provider networks. HMOs believe that as long as they have a variety of health care specialists they have covered their bases and are providing a good service. . .

CHAPTER IV Untangling the Medicaid Managed Care Enrollment Maze

Choosing a Primary Care Physician (PCP)

[Try using the following approach when assisting consumers]

For many people with disabilities this is really a chicken or an egg issue. It's like working backwards. Specialists and other health care providers are what is really important for people with disabilities who have ongoing health care needs. Many see their specialists far more often than a family doctor. Some people with disabilities see a specialist for everything and do not have a family doctor. However, in order to enroll in a managed care plan, the consumer must choose a PCP. Remember, this is the doctor who must make the referrals to specialists and other providers, so choosing a good PCP is very important. Again, if available, keep the PCCM option in mind. It allows the greatest flexibility in choosing specialists. The Health, Options, Plans (HOP) brochure in the Appendix is a helpful tool in making this selection.

If the consumer sees specialists or uses health care providers, and doesn't have a family doctor, start by finding out the networks the specialists or other providers are in, and then, after determining what HMO provider network is best for the consumer, look for a good PCP in that same network.

Start by identifying specialists and providers and locating them on HMO Provider Networks

• Tell the consumer to list all the health care providers he or she uses
• If there are several, ask which one is most important and start there
• Check the managed care membership network directories and see if the provider is listed
• If listed, call the provider and verify that they are still an active member
• If not listed, call the provider and ask if they are a member of any of the managed care choices available to the consumer

Repeat these steps for all the providers the consumer uses and wants to keep seeing. Often membership network directories will not list specialists or other health care providers, and the consumer must call the provider to get that information. Prepare consumers for the number of calls they may need to make to get all the information needed to make a good health care plan choice.

Behavioral Health Services

Behavioral Health Services is the new name for mental health and substance abuse services. This new label may need to be explained to consumers. Different states use different approaches in providing behavioral health services for people in Medicaid managed care. Some states continue to use traditional Medicaid (fee-for-service) to provide behavioral health services. Other states allow HMOs to contract with Behavioral Health Organizations (BHO) to provide mental health and substance abuse services. The number of the Behavioral Health Organization should be in the member handbook of the HMO. A consumer can call the BHO and get a direct referral to a mental health or substance abuse specialist. Usually the consumer can directly call the BHO and get a direct referral to a Behavioral Health Specialist WITHOUT having to go through his or her PCP.

Other issues to consider when evaluating HMOs:

• Hospitals in the network
• Medical services available in the consumer's primary language
• Offices/services barrier free and/or accessible
• Durable Medical Equipment vendors (that consumer uses) in network
• Psychotropic medications on the drug formulary

Finally, the consumer needs to look at the value added services that may be available and consider those possible cost saving benefits. Once the consumer has all this information, it is easy to compare the plans, and select the one that best fits his or her needs.

It is very important that the consumer understands that unless he or she pays for the services, all health care services he or she receives must be from network providers. This is a big change from traditional Medicaid.

Transition Plans

Unfortunately, some consumers will not be able to find all their providers on the same plan's network. This means that they will have to change some providers. Most managed care plans allow for a transition period. That allows time to make the change from one provider to another, without care being compromised. Thirty days is a good rule of thumb for a transition period, but it can be longer depending on the consumer's situation. During the transition period, the HMO will pay for the already existing service provider to continue the service, while a plan of care is developed with the new network provider. The HMO may not always tell you about transition plans so don't be shy about asking.

Membership Services

Which brings up Membership Services. This is a nonexistent concept in traditional Medicaid. Remember, the HMO wants your business and should treat you like a valued customer because you can usually take your business to another HMO. The Membership Services number is in the managed care directory and on the membership card the consumer receives after enrolling in a managed care plan. This office should handle a variety of issues, and should be the first call if you have questions about HMO services, special needs, or complaints. They should have extensive knowledge of the HMO's provider network and services. If willing, they can act as an internal advocate within the HMO to get the consumer's needs met. Consumers should let this office know if they are unhappy with their healthcare services. Depending on the issue, Membership Services may intervene or direct the consumer to someone who can help.

Summary of Enrollment Issues:

• Is enrollment voluntary or involuntary?
• Are value-added services important?
• Is there a PCCM option of managed care available?
• What managed care plans are existing service providers members of?
• Is a transition plan needed?
• Can Membership Services provide additional information or help?

. . .It is very important that the consumer understands that unless they pay for the services themselves, all health care services they receive must be from network providers. This is a big change from traditional Medicaid. . .

What to do When Things Go Wrong

Suppose the consumer enrolls in a managed care plan, and becomes dissatisfied for some reason. What can be done? The answer to this is, lots of things depending on the nature of the problem. As with most problems, only apply the amount of pressure needed to fix the problem. Consider the following:

• Call the doctor or service provider and see if the problem can be fixed
• Call Membership Services
• Change your PCP
• Call any local ombudsmen/managed care advocate program available
• Use the HMO internal grievance procedures
• If possible, change your HMO
• Contact the state Protection and Advocacy Agency
• File a complaint with the State Board of Insurance
• Ask for a Medicaid fair hearing (Medicaid recipients only)
• Contact the local Legal Aid office or other local attorney

A Patient's Bill of Rights

Congress is considering a Patient's Bill of Rights which would establish protections for consumers in managed care. The debate involves how many people the bill will cover, what protections will be included, and how strong the protections will be. Some states already have strong consumer protections in place. The Web Site Addresses in the Appendix indicate states consumer protection laws. States with existing strong consumer protections are concerned that new federal proposals may undermine state law. Consumer groups believe that a Patients' Bill of Rights must include:

• an External Independent Review Process
• a Consumer Assistance Program
• access to Out-of-Network Providers

Consumers of Medicaid managed care also have the right to a Medicaid state-level fair hearing.

Medicaid Fair Hearings

If the consumer is in Medicaid managed care there is always the option to request a Medicaid fair hearing. Medicaid recipients have the right to have their complaint heard by impartial hearing officers before their Medicaid benefits are reduced, denied, or delayed. Federal Medicaid laws specify the following:

1. Medicaid recipients must be informed in writing when a benefit is denied and generally given at least 10 days notice before a benefit is reduced or terminated.
2. Medicaid recipients have the right to a hearing before an impartial hearing officer whenever the recipient disagrees with a denial of service or the reduction or termination of a service. Recipients have the right to a written decision within 90 days of the hearing request. If dissatisfied with the hearing officer's decision, the recipient can appeal to state court.
3. If the situation involves the reduction or termination of services, the recipient can usually get the services continued until the outcome of the hearing is known.
4. Medicaid recipients can also use the grievance procedures available through their HMO. Using the HMO's internal grievance procedures does not limit the recipient's right to request a Medicaid fair hearing.

When preparing for a hearing gather all the documents (medical test results, letters, etc.) that support your claim. The local legal aid office or state Protection and Advocacy agency may be able to help you prepare for the hearing.

. . . As with most problems, only apply the amount of pressure needed to fix the problem. .

Examples of Problems and Solutions

Problem

If the consumer is deaf and notifies the doctor that a sign language interpreter is needed during his visit. The doctor's office staff says that they will communicate by writing notes, an interpreter is not needed.

Possible Solution

The consumer tells the doctor's office staff that he has several health care concerns to discuss with the doctor, and he needs an interpreter. If the office staff agrees, the problem is solved, but if not....

Call Member Services and report the situation and the doctor's office response and ask that they fix the problem. If satisfied, great, if not....

Call the local ombudsman program or the State Protection and Advocacy Program, or Legal Aid and discuss the ADA violation problem with them.

The consumer could also consider changing the PCP.

Problem:

The consumer disagrees with the decision made by the HMO, or is dissatisfied with the quality of care.

Solution:

All HMOs have internal grievance procedures. The Membership Services Representative can explain them to you. As with all complaints, having written records of the denials and your communication with the HMO will strengthen your case. HMOs have time lines they must meet in response to a consumer complaint. Shorter time lines are in effect if it is an emergency situation. Different states have enacted different laws affecting consumer rights and managed care. Another alternative is filing a complaint with the State Board of Insurance.

. . . Medicaid recipients have the right to have their complaint heard by an impartial hearing officer before their Medicaid benefits are reduced, denied, or delayed. . .

Troublesome Issues in Medicaid Managed Care Enrollment

Independent living centers should be aware of some possible pitfalls that consumers may encounter during enrollment. Many of the approaches used by the enrollment broker may make sense from an efficiency point of view, but may not be helpful for consumers struggling to make an HMO choice. Training and experience of enrollment staff may be limited, and centralized telephone enrollment counselors deal with a high volume of calls, and often cannot give individualized advice. Further complicating this situation are the enrollment materials which are often voluminous and confusing.

Skill and Experience Level of Enrollment Staff

People with disabilities on Medicaid often have complicated medical issues. Often there are several doctors and other providers that provide the mix of acute and long-term community- based services. A high percentage of people with disabilities on Medicaid also receive Medicare. Thus, the questions that need to be considered are complicated. Beyond that, many consumers are confused themselves as to their coverage and do not know where to begin or what questions to ask. Front line enrollment staff are often not prepared to sort out and respond to complex issues. Some may be contract workers hired for a peak enrollment period. Turnover is high. They are expected to deal with a high volume of callers and process the enrollments. They are not trained and cannot advise someone on which is the best managed care plan to choose.

Telephone Enrollment

This is a very impersonal process. Typically, the enrollment broker has a centralized location and does telephone enrollment for a large area using toll free 800 numbers. If the consumer has questions, he or she can ask if there is a local enrollment office that can assist with answering questions or completing the paperwork. Some consumers may not have phones or may not be able to understand the materials. The local enrollment office should assist in such situations.

CHAPTER V OTHER ROLES FOR ILCs AND DISABILITY ORGANIZATIONS

ILC Role on Medicaid Managed Care Advisory Committees

One of the most important roles for the independent living center is making sure that the consumers' voices and stories are heard in ways that matter. Many state Medicaid managed care plans call for advisory committees. The public responsibility and funding for the Medicaid program demand an open process with the maximum sharing of information. It is very important that ILC's show up at advisory meetings because providers, doctors, and HMOs will be well represented and advocating for their interests.

. . . People with disabilities on Medicaid often have complicated medical issues. Often there are several doctors and other providers that provide the mix of acute and long-term community-based services. . .

Principles of involvement on advisory committees

Consumers' and advocates' input should be valued
Consumers and advocates should be involved at all levels

• plan development
• plan readiness review
• plan implementation
• outreach activities plan
• ongoing educational efforts
• multi-faceted review and quality assurance

It is important to recognize that the persons receiving Medicaid represent a diverse group of people, many of whom do not identify with disability or advocacy groups, or may be from different cultures. In many ways poverty is the common denominator. ILCs need to guarantee the issue of diversity is addressed, in part by their representation on advisory committees.

Community Based Organizations (CBOs)

The company contracted to be the enrollment broker has a huge job. Typically, the enrollment broker does not have a presence in the community before receiving the contract. So they are often times unaware of community organizations and leaders. Some enrollment brokers have no knowledge of disability or disability organizations. When they come into a community, they often decide to contract with community based organizations to help with outreach, educational efforts, and enrollment events. ILCs are ideally placed within the disability community to function as a CBO.

CHAPTER VI UNDERSTANDING MEDICAID RECIPIENTS

Poverty issues

Poverty is the one issue all Medicaid recipients have in common. There are two roads onto Medicaid. There is the Temporary Aid to Needy Families (TANF) path, typically given to women with children who have no other viable means of support and are not necessarily disabled. Families who are not eligible for the TANF program may still qualify for Medicaid if they meet the eligibility standards for AFDC that were in place on July 16, 1996, and it is important that eligibility workers screen applicants for Medicaid even if they are not eligible for or do not receive TANF. The other path to Medicaid is through SSI, given to some people with disabilities who also happen to be poor. Medicaid is a poverty based program. People on Medicaid are more likely to identify with poverty issues. They have difficulty finding adequate housing, transportation, and other necessities of life.

This means that many Medicaid recipients, although disabled, do not know about the ILC or other community disability organizations. People who are lucky have family or friends who help sustain them, help with decision making, and in general, look out for them. Many others live in relative isolation. They do not belong to any disability or other support groups. In fact, they do not know such groups exist. Their lives are oriented around survival issues.

On the other side of the equation, ILCs and disability organizations certainly know some Medicaid recipients. It is likely though, that extensive and innovative outreach efforts will be needed to reach significant numbers of Medicaid recipients with disabilities. Remember, many of the recipients will not know to call or come to the center.

. . . One of the most important roles for the ILC is making sure that the consumers voices and stories are heard in ways that matter. . .

Literacy Issues

Literacy, the ability to read, understand, and use written information, is often problematic for Medicaid recipients. The National Adult Literacy Survey (NALS) indicates that nearly 50% of the general population read and understand information in the lowest two levels of a five level scale. Half of the adult population reads at or below the 8th grade level. However, when issues like disability, poverty, and ethnicity were considered the percentage reading at or below the 8th grade level rose to 70% or more. A large percentage falls in the first scale, which covers everything from total illiteracy to simple word recognition.

Commonplace written materials were evaluated as part of the NALS study. Of the materials evaluated, 80% of the materials could be understood by 3% of the population. The study also noted that most people reading at the low end of the literacy scales, when asked about their reading ability, will state that their reading abilities are either adequate or good. The conclusion from this is that many people with significant literacy issues do not identify it as a problem or may find it embarrassing. Either way, they do not ask for help. reading ability will state that their reading abilities are either adequate or good. The conclusion from this is that many people with significant literacy issues do not identify it as a problem or may find it embarrassing. Either way, they do not ask for help.

Even if enrollment materials and information about managed care are written at a relatively low level (6th grade) there will still be many consumers unable to read the information or make decisions based on the information. A multifaceted approach to outreach is essential, and there will always be a need for people to explain the written information and be available to discuss individual situations.

Cultural Issues

Culture is a shared set of belief systems, values, practices, and assumptions that determine how we interact with and interpret the world. Culture gives structure to our attitudes and behaviors, and reflects our own unique backgrounds. Many consumers come from backgrounds that are dissimilar to the mainstream U.S. culture.

Consumers may come from backgrounds where a social class system is openly practiced, and thus may distrust information coming from someone judged to be from an inferior social class. Disease or disability may be seen to be a curse or the intervention of a supernatural being or evil spirit. Some consumers may be more comfortable with nontraditional forms of health care, while others may only want to see a female doctor or a male doctor for their health care. Managed care organizations must be very sensitive to cultural issues and constantly strive for the most diverse network of providers possible. Cultural diversity goes far beyond language differences, it goes to how people view their world and all that goes on in it. Quality medical care can only be achieved in an atmosphere that respects the cultural diversity of the consumer and doesn't rush to judge behavior based on the values of the mainstream culture.

. . . The National Adult Literacy Survey (NASL) indicates that nearly 50% of the general population read and understand information in the lowest two levels of a five level scale. . .

Outreach Strategies Need to Address Issues Like

• Poverty
• Literacy issues
• Diversity of consumers
• Cultural differences
• Disability

These are the things that must be kept in mind when planning outreach strategies with this group of consumers. No single approach will work. A multifaceted approach that uses a mix of written and spoken communication is needed. It entails information the ILC can directly share with consumers, and the ILC can also educate community leaders so that they can spread the news to their community. Trust is a huge issue. For many consumers, in order to act on the information it has to come from someone they trust.

. . . Cultural diversity goes far beyond language differences, it goes to how people view their world and all that goes on in it. . .

Finally, the ILC must make a decision about how involved to become. Managed care and Medicaid managed care are very complex, and staff will need training in order to be helpful. The role of the ILC could be narrow in scope or very broad. Examples of things an ILC could do include:

• writing a newsletter/article about managed care
• being involved in advisory committees
• becoming a Community Based Organization (CBO)
• hosting an enrollment event
• working with community leaders (poverty, ethnic organizations)
• working with church leaders (area of diversity)
• doing outreach at neighborhood clinics/centers
• hosting informational meetings at neighborhood centers or churches
• presenting on TV and radio in English and other languages

How far and to what lengths an ILC goes is obviously up to the Board and staff of the ILC. Managed care is affecting more and more people with disabilities. There is both potential and risk involved with it. In order to navigate managed care successfully, consumers must understand the process, learn the rules of the game, and know what to do if they are dissatisfied. The quality of their healthcare is at stake.

. . . It is important to recognize that the persons receiving Medicaid represent a diverse group of people. Many of whom, do not identify with disability or advocacy groups, or may be from different cultures. In many ways poverty is the common denominator. . .

APPENDIX
WEB SITE ADDRESSES

There is no way to list all the web sites that have information about managed care and Medicaid managed care. Most of the web sites have links to other sites for further information. There is a wealth of information available reflecting many views and perspectives. Some of the best web sites are listed below:

Bazelon Center for Mental Health Law is a legal advocacy group for the civil rights and human dignity of people with mental disabilities. http://www.bazelon.org

Children's Defense Fund's mission is to Leave No Child Behind and to ensure every child a Healthy Start, a Head Start, a Fair Start, a Safe Start, and a Moral Start in life and successful passage to adulthood with the help of caring families and communities. http://www.childrensdefense.org

F amilies USA Foundation is a national nonprofit, non-partisan organization dedicated to the achievement of high quality, affordable health and long-term care for all Americans.
http://www.familiesusa.org

HCFA is the federal agency that administers the Medicaid, Medicare, and Child Health Insurance Program. http://www.hcfa.gov

Mathematica Policy Research Inc. is a leader in policy research and analysis. The firm has conducted some of the most important evaluations of public programs and demonstrations undertaken in the United States. http://www.mathematica-mpr.com

Murphy's Unofficial Medicaid Page is a Resource Guide to Medicaid and contains links to State Medicaid sites on the web. http://www.geocities.com/CapitolHill/5974/index.html

National Clearinghouse on Managed Care and Long Term Supports and Services for People with Developmental Disabilities and Their Families. http://www.mcare.net

National Committee for Quality Assurance is a private, not-for-profit organization dedicated to assessing and reporting on the quality of managed care plans. http://www.ncqa.org

National Health Law Program is a national public interest law firm that seeks to improve health care for America's working and unemployed poor, minorities, the elderly, and people with disabilities. http:// www.healthlaw.org

The Urban Institute investigates social and economic problems confronting the nation and analyzes efforts to solve these problems. http://www.urban.org

GLOSSARY

Acute Care - Medical services provided to treat an illness or an injury, usually these services are only needed for a short time. Examples include x-rays, laboratory tests, etc.

Appeal - Process used to challenge a managed care provider or managed care organization's decision. Typically there is an internal appeal process that is handled within the managed care organization. There is also an external appeal to the State Board of Insurance or other legal alternatives. For consumers receiving Medicaid there is also the option of a Medicaid Fair Hearing.

Benefits - Medical and related services the managed care organization agrees to provide in the health plan.

BHO - Behavioral Health Organization is an organization that provides mental health or substance abuse services. Sometimes HMOs contract with BHOs to provide behavioral health services to their members.

Cap - Capitation is the amount agreed upon and paid to the health care organization to cover the cost of health care.

Case Management/Care Coordination - Service provided by managed care organizations to coordinate and monitor treatment to consumers who typically have high care costs or long term medical needs. Sometimes consumers can negotiate their care with their Case Manager.

Co-payment - The amount the consumer pays for health care in addition to what the managed care organization pays. For example, many non-Medicaid HMOs require $10 co-pay for each doctor's visit.

DME - Durable Medical Equipment is medical equipment that is used repeatedly, examples include wheelchairs, walkers, oxygen equipment, etc.

Dual Eligible - Consumers who receive both Medicare and Medicaid.

Enrollee/Recipient - Term used to describe the consumer within the health care plan.

Enrollment - The process of choosing and signing up with a health care plan. This may be accomplished in person, by mail, or over the telephone and is a process typically handled by the enrollment broker.

Enrollment Broker - The Company which the state contracts with to explain the plans available to consumers and complete the enrollment process.

ERISA - Employment Retirement Insurance Security Act is the federal act allowing businesses to self-fund their health insurance programs. Such programs can limit their benefits packages and are not covered by the state insurance regulations.

EOB - Explanation of Benefits is the statement received by consumers from their managed care organization that lists the services received, the amount billed, and the amount paid.

Fee-for-Service - Traditional Health insurance that allows the consumer to choose providers and services often with a deductible and co-payment. Also known as indemnity coverage.
Formulary - The list of prescription drugs the managed care organization agrees to cover.

HCFA - Health Care Financing Administration is the federal agency responsible for administering Medicare and oversees the states' administration of Medicaid.

HEDIS - Health Plan Employer Data and Information Set is a set of performance measures managed by the National Committee for Quality Assurance to assist employers and other health care purchasers in evaluating a health care plan's performance. Also used by HCFA to monitor the quality of care given by managed care organizations.

HMO - An organization that provides, offers, or arranges for coverage of designated health services needed by plan members for a fixed prepaid premium.

IME - Independent Medical Examination is an examination by an impartial health care provider usually for the purpose of resolving a dispute.

JCAHO - Joint Commission on Accreditation of Healthcare Organizations is an independent organization that evaluates, sets standards, and accredits various hospitals, health plans, and other health care organizations.

Mandatory Enrollment - A term of managed care that means the consumer must make a health plan choice by a certain time or be defaulted into a plan that the state will choose for the consumer.

Long Term Care - The care/services for chronic ongoing conditions that focuses on maintaining or improving functional abilities.

MCO - Managed Care Organization is the generic term describing any plan that delivers health care by controlling providers and costs. HMOs and PCCM are two examples of managed care organizations.

Out-of-Network Provider - Non-participating providers are health care providers who have not contracted with the health plan to be the provider of health care.

Out-of-Network - Is the coverage for treatment received from a non-participating provider. Typically, this is far more expensive for the consumer than in-network coverage.

Out-of-Pocket Costs/Expenses - Portion of the cost that must be paid by the consumer. This includes co-payments and deductibles.

PCCM - Primary Care Case Management is a model of managed care in which the physician acts as the coordinator for the consumer's care for a monthly fee while continuing to be reimbursed on a fee-for-service basis.

PCP - A Primary Care Physician is a physician, usually specializing in internal medicine, family/general practice or pediatrics, and is responsible for overseeing the consumer's medical needs in a managed care system.

Provider Network - A group of physicians and health care providers that have a contract with a managed care organization to provide services to the plan's enrollees.

SSI - Supplemental Security Income is monthly cash assistance to people who meet certain disability guidelines and who also have low incomes. SSI usually includes access to Medicaid.

TANF - Temporary Aid to Needy Families (formerly Aid to Families with Dependent Children (AFDC) is cash assistance typically given to mothers and children who have no other viable means of support. TANF usually includes access to Medicaid.

Utilization Review - Process used in managed care to ensure that services received by their consumers are medically necessary, cost effective, and are within the plan's requirements for care. Generally, treatment must meet the plan's guideline for medically necessity in order to be covered by the plan.

Value Added Services - Additional services or benefits that an HMO may offer their consumers above and beyond what is covered by Medicaid.

Health...
Options...
Plans...

An Easy Checklist to Help You Find the Best Health Care Plan for You

You will be getting information from the state that explains...

• What the changes mean for you and your family?
• The health care plan choices you have to choose from.
• What you must do to get signed up with a health care plan?
• The date when you must make your choice and sign up with the plan.

Things are changing and you need to...

• Choose a health care plan, sometimes called an HMO.
• Choose a doctor that belongs to that health care plan. This doctor is sometimes called a PCP (Primary Care Physician). The doctor or PCP you choose is the doctor you will see for every day illnesses and health care (like flu, colds, and checkups). If needed, this doctor will send you to other doctors (specialists) to make sure that you get all the medical care you need.

Things you need to look for in a plan...

• If you have a doctor you use, call their office and ask if your doctor is part of the health plan you choose.
• If you do not have a doctor, ask a friend, family member, or neighbor if they know a good doctor they can recommend or look in the health care plan directory for doctors in your area and choose one.

More things to think about before you choose a plan...

• Check to see if the health care plans have any extra services (sometimes called value added services). These could be things like dental services, buying eye glasses, or other special offers. These would be things you could not get under the "old" Medicaid.
• If you use special doctors for a health problem, check with those doctors and ask them what health plan they belong to.

Getting Down to the Business of Choosing a Health Care Plan

Listed in the below are important health care issues for people with disabilities.

1. What applies to you (physical, mental, children)?
2. Check off what is important to you?
3. Using the information below, check the health care plans that meet your needs.
4. Choose a plan.

You can find out about health care by:
.. Calling your doctor's office.
Health Plan A Health Plan B Health Plan C

.. Talking with the enrollment counselor.
Health Plan A Health Plan B Health Plan C

.. Looking in the health care plan directory.
Health Plan A Health Plan B Health Plan C

.. Calling the member services number in the health plan directory.
Health Plan A Health Plan B Health Plan C

What's Important to You?
.. If you are the person on Medicaid because of a physical disability, these things may be important to you:
Can I keep my family doctor or clinic?
Health Plan A Health Plan B Health Plan C

Can I keep the hospital I use now?
Health Plan A Health Plan B Health Plan C

Can I keep my specialist (example: gynecologist, cardiologist)?
Health Plan A Health Plan B Health Plan C

Is transportation to the doctor available?
Health Plan A Health Plan B Health Plan C

Is the medical equipment and/or supplies available?
Health Plan A Health Plan B Health Plan C

Are the medical services available in my language?
Health Plan A Health Plan B Health Plan C

Are the offices accessible or barrier free?
Health Plan A Health Plan B Health Plan C

.. If you use mental health or drug/alcohol specialists (called behavioral health services), these things may be important to you:

Is my psychiatrist or mental health worker in the health care plan?
Health Plan A Health Plan B Health Plan C

Can I get the medical I need?
Health Plan A Health Plan B Health Plan C

Are there special services, like day treatment, in-home theraphy, or partial hospitalization?
Health Plan A Health Plan B Health Plan C

Are mental health or drug/alcohol services available in my language?
Health Plan A Health Plan B Health Plan C

.. If you have a child on Medicaid, these things may be important to you:

Can I keep my child's pediatrician (child's doctor)?
Health Plan A Health Plan B Health Plan C

Is there a children's hospital in the health care plan?
Health Plan A Health Plan B Health Plan C

Are all the specialists (example: pediatric orthopedic) in the health care plan?
Health Plan A Health Plan B Health Plan C

Are there mental health services for my child?
Health Plan A Health Plan B Health Plan C

Does the health care plan provide medical equipment and/or supplies for my child?
Health Plan A Health Plan B Health Plan C

What do I do if things GO WRONG?

If you have questions about Medicaid managed care?
You can:

• Call the enrollment counselor, the number is in the materials you received.
• Call the Member Services number for the health care plan.
• Talk to your doctor or nurse about the health care plan.
• Talk to your mental health therapist about the health care plan.
• Call the independent living center or disability organization.

If you are unhappy with Medicaid managed care?

There are things you can do, pick the solution that best fits your problem:

• Call the help line.
• Ask to change your doctor (PCP or Primary Care Physician).
• Ask to change your health care plan.
• Talk to a patient advocate in the Member Services Department of your health care plan.
• Ask your health care plan to make a different treatment decision (called an appeal).
• Ask for a Medicaid Fair Hearing with the State.
• Talk with the State Board of Insurance.
• Talk with an attorney or call the State Protection and Advocacy agency.

About ILRU

Since 1977, ILRU (Independent Living Research Utilization) has served as a national center for information, training, technical assistance, and research on independent living. ILRU is affiliated with TIRR Systems, a corporation providing a continuum of services to people with disabilities.

This publication is made possible through the support of the Rehabilitation Research and Training Center on Managed Care and Disability funded by the National Institute on Disability and Rehabilitation Research.
Grant (#H133B70003)
Copyright (c) 1999 ILRU
Cricket Images provided by Noreen Strehlow @ http://www.execpc.com/~strehlow/Site/Site.html