Comments on OMB's Request for Information on Executive Order 13166

December 28, 2001

Brenda Aguilar
Office of Information and Regulatory Affairs
Office of Management and Budget
Washington, DC 20503

RE: Request for Information: Assessment of Cost and Benefits Associated with Implementation of Executive Order 13166

Dear Ms. Aguilar,

The National Health Law Program (NHeLP) submits these comments on behalf of NHeLP and the undersigned organizations in response to OMB's Request for Information published in theFederal Register on November 30, 2001. As organizations advocating and educating on health issues, we have tailored our responses to address the health care arena. These organizations represent a large and diverse group of Medicaid beneficiaries, including children, people with disabilities, immigrants and refugees, limited English proficient individuals, and others.

The resolve of President Bush to put "a priority on access to health care," and the Administration's commitment to Executive Order (EO 13166) and its implementing guidances offer a bright beacon of light for individuals currently consigned to the shadows of our health care system due to linguistic barriers. We applaud the Administration for recognizing the importance of ensuring the access of limited English proficient ("LEP") individuals to all government services, especially health care. We strongly support EO 13166 and the subsequent guidances issued by the Departments of Justice, Health and Human Services' Office for Civil Rights (OCR), and other Departments. The EO and subsequent guidances provide much needed clarification for health care and social service providers regarding their role in upholding Title VI of the Civil Rights Act of 1964. The federal government's endeavor to implement the EO is critically important to ensure that LEP persons have fair and equal access to the health care and social services to which they are entitled. The EO and subsequent guidances establish the key principle that all federal services B whether by a federal agency or a federal fund recipient B must be accessible to every LEP person, yet they recognize the pivotal role of flexibility in determining the provision of services by federal fund recipients.

We have organized our comments to follow the questions/issues raised by OMB in its Request for Information.

1. Determining how best to quantify the numbers of LEP individuals and which languages they speak.

A number of different methods exist to quantify the numbers of LEP individuals and which languages they speak. The 1990 Census provides the most comprehensive data on these two issues. (The 2000 Census data on language use will be available in the summer of 2002.) The 1990 Census asked respondents to answer the following questions: (1) Does this person speak a language other than English at home?; (2) What is this language?; and, for those who speak another language at home, (3) How well does this person speak English? B very well, well, not well, not at all. This data is available by state and region, providing a baseline for the number of LEP individuals and their languages. Yet there are concerns about the completeness of the Census data due to the recognized undercount of minorities, particularly recent immigrants and non?citizen residents. To provide a more accurate quantification of the numbers and languages of LEP individuals, we would suggest that any use of Census data be adjusted in the manner that demographers or other expert deem appropriate to reconcile any possible undercount.

Decennial Census data should also be supplemented by reliable data which more clearly reflect the LEP population within a particular community. For example, additional census data B such as the Supplementary Survey B may provide more specific data on the municipal level. And a forthcoming nationwide expansion of the American Community Survey beginning in 2003 will allow for the collection of language proficiency and other long?form data on a yearly basis. specific federal regulations provide a method of quantifying the numbers and languages of LEP individuals served by health programs.

In addition to Census data, data from other sources may be available. Pursuant to recently proposed Medicaid managed care regulations, states must establish a methodology (e.g. geographic composition, population density, enrolled population) for identifying the prevalent non-English languages spoken by enrollees and potential enrollees throughout the state. Proposed 42 C.F.R. ' 438.10(c), 66 Fed. Reg. at 43662. The regulations define "prevalent" as a non-English language spoken by a significant number or percentage of potential enrollees and enrollees in the state. In addition to establishing a methodology, each state's quality assessment strategy must include procedures to identify the primary language of each Medicaid enrollee and notify the managed care organization or prepaid in-patient health plan at the time of enrollment. Proposed 42 C.F.R. ' 438.204(b)(2), 66 Fed. Reg. at 43668. Both of these provisions require states B independent of EO 13166 B to collect the primary language of enrollees and determine the prevalent languages so that the state and managed care entities can ensure access by LEP individuals to the Medicaid program.

Some health care providers have also used information on school enrollment and from refugee re-settlement programs to further refine their data.

2. Understanding the number of different languages spoken by LEP individuals, and their geographic distribution.

As noted in our answer to Q. 1, the available 1990 Census data and forthcoming 2000 Census data will provide the most relevant information to understand the number of different languages spoken by LEP individuals and their geographic distribution. Once the Medicaid managed care regulation is finalized and states begin collecting data, another source of information specifically related to health care will be available.

Another source of data to understand the number of different languages and their geographic distribution are community health centers (CHC) which collect data on linguistic preference. The CHC's Uniform Data Set (UDS) reports the percentage of users needing interpretation, bilingual or Sign Language services.

3. Characterizing the interactions of LEP individuals with both federal and federally funded entities. For example, how frequently do LEP individuals interact with government at all levels? What types of government services do LEP individuals typically access? Are there types of services that LEP individuals access more or less frequently than non?LEP individuals?

While the interaction of LEP individuals with federal and federally-funded programs is widespread B including schools, refugee resettlement, INS, health care services, and transportation B current program policies, especially in health care, dramatically hinder the ability to characterize the interaction of LEP individuals with federal and federally funded programs. We wish to raise two concerns: 1. the lack of data collection by federal and federally-funded programs precludes an accurate assessment of those LEP individuals who do access these programs; and 2. language barriers have hindered LEP individual's access to these programs.

Government agencies and recipients of federal financial assistance currently fail to collect primary language data of individuals utilizing federal and federally-funded services. If collected, this data would provide concrete evidence of the types of services LEP individuals typically access, whether some services are used more or less frequently and what types of linguistic and cultural competency services should be implemented to assist in this access. For example, as suggested in the Office of Minority Health's National Standards on Culturally and Linguistically Appropriate Services (CLAS) in Health Care, health care organizations should include a patient's race, ethnicity and spoken and written language in health records and the organization's management information systems. The routine collection of this data would provide accurate information for evaluations like those being undertaken here by OMB, and would also allow providers to tailor their services to address the needs of LEP individuals. On the other hand, no amount of improvement in utilization data will capture information on LEP individuals who should be benefitting from a given program but never even try to do so because of a perceived or actual inability of the agency to communicate with them.

4. Determining the costs and benefits of improving English language proficiency among LEP individuals.

Increasing English language proficiency among LEP individuals would decrease their need for interpreter and translation services. Toward that end, fostering completion of English as a Second Language (ESL) classes would improve English language proficiency among LEP individuals. Yet programs providing English as a Second Language (ESL) classes are chronically underfunded. In many major metropolitan areas, the waiting list for entry into ESL classes extends to months or years. In New York City, for example, the wait is currently as long as two years. If additional funding were provided, more individuals could learn English. The initial cost outlay to subsidize ESL classes would be offset by the eventual benefit of needing fewer interpreters or translations for these individuals.

We do not suggest, however, that fully funding ESL classes will obviate the need for medical interpreters. Many LEP individuals who achieve some level of English proficiency will nonetheless not understand medical terminology. Trained medical interpreters provide the knowledge of complex terminology essential to ensuring a patient's understanding of a medical diagnosis and treatment, as well as bringing cultural sensitivity to the provider?patient interaction.

5. Understanding and quantifying the level of services provided by the government or government funded organizations to address the special needs of LEP individuals prior to Executive Order 13166 and to what extent changes will be necessary to achieve full compliance with Executive Order 13166 and related agency guidance.

The requirement that recipients of federal financial assistance provide access to LEP individuals in assisted programs and activities is not new. In 1964, Congress enacted Title VI of the Civil Rights Act which prohibits discrimination on the basis of national origin and ensures LEP individuals access to federal and federally-funded programs.

In ensuring access for LEP individuals in the health care arena, OCR has had the responsibility to enforce Title VI for over 30 years, has investigated hundreds of complaints, and has negotiated dozens of voluntary resolution agreements. For example, in 1998 it issued an internal guidance memorandum on LEP instructing its regional offices on enforcement of Title VI "to ensure consistency in OCR's investigation of LEP cases." The EO and OCR's current LEP Guidance merely clarify, for all federal fund recipients as well as the general public, the recipients' existing legal obligations under Title VI. Thus, as the EO and implementing guidance recognize, no new requirements or mandates have been effectuated by the EO.

Indeed, as many existing regulations demonstrate, agencies have long-standing policies which require providing language assistance or cultural competency as a condition of receiving funding. These regulations include:

$ HHS generally B 45 C.F.R. ' 80.4(a) requires every application for federal financial assistance, as a condition of approval, to include an assurance that the program will be conducted or the facility operated in compliance with all requirements of Title VI. States must adopt methods of administration for the program that give reasonable assurance that the applicant and all recipients of federal financial assistance under the program will comply with all the requirements imposed by Title VI;

$ Medicaid generally B 42 C.F.R. ' 435.901 requires a state Medicaid agency's standards for determining eligibility be consistent with the rights of individuals under Title VI;

$ Medicaid managed care B

< Proposed 42 C.F.R. ' 438.10(c) would require: (1) states to develop a methodology for identifying LEP individuals and provide written information in each prevalent non-English language, and to require each managed care entity to make its written information available in the prevalent non-English languages in its particular service area; (2) the state and managed care entities to make oral interpretation available free of charge to each potential enrollee and enrollee; and (3) the state and all managed care entities to notify enrollees and potential enrollees that oral interpretation is available for any language and written information is available in prevalent language and how to access those services;

< Proposed 42 C.F.R. '' 438.6(f)(1), .8(a)(1) would require all Medicaid managed care contracts to comply with Title VI;

< Proposed 42 C.F.R. ' 438.206 would require states to ensure that managed care organizations and prepaid in-patient health plans participate in the state's efforts to promote the delivery of services in a culturally competent manner to all enrollees, including LEP individuals and those with diverse cultural and ethnic backgrounds;

< Proposed 42 C.F.R. ' 438.100 would require states to ensure that each managed care entity complies with Title VI;

$ State Children's Health Insurance Program (SCHIP) B 42 C.F.R. ' 457.130 requires the State plan to include assurances of compliance with Title VI ;

$ Medicare B 42 C.F.R. ' 489.10(b)(1) requires that all providers must meet the applicable civil rights requirements of Title VI;

$ Medicare Plus Choice (M+C) B 42 C.F.R. ' 422.112(a)(9) requires all M+C organizations to ensure services are provided in a culturally competent manner to all enrollees, including those with limited English proficiency;

$ Hill-Burton supported programs B 42 U.S.C. 300s(6), 300s-6 and 42 C.F.R.124.9, 124.603 outline the community service assurance requirement which mandates that recipients of Hill-Burton funds make services available to persons residing in the facility's service area without discrimination on the basis of race, color, national origin, creed, or any other ground unrelated to the individual's need for the service or the availability of the needed service in the facility;

$ Community health centers B 42 U.S.C. ' 254b(j)(3)(K) requires that centers that serve a substantial proportion of individuals of limited English-speaking ability must, to the extent practicable, make arrangements to provide services in the most appropriate language and cultural context;

$ Maternal and Child Health block grant B 42 C.F.R. ' 51a.7 requires grantees to abide by Title VI;

$ Department of Defense B 32 C.F.R. Part 195 requires each applicant for federal financial assistance to include assurances of compliance with Title VI ; and

$ Department of Veterans Affairs B 38 C.F.R. ' 18.4 requires applicants for federal financial assistance to provide assurances of compliance with Title VI.

6. Quantifying and describing the costs to the Federal Government or recipients of federal funds of providing oral and written translation services.

The Costs of Providing Language Assistance Which Should Be Excluded from the Costs of Implementing EO 13166

While we recognize that, pursuant to P.L. 107-67, OMB must issue a report assessing the total costs and benefits of implementing EO 13166, we believe that the initial threshold OMB must address is what costs are directly associated with implementing the EO as opposed to the expected and ongoing costs of implementing Title VI of the Civil Rights Act of 1964.

Thus, as discussed in our answer to Q. 5 and as the EO and implementing guidance recognize, no new requirements or mandates have been effectuated by the EO. Rather, the EO merely clarifies the existing responsibilities of recipients of federal financial assistance. Since recipients have been mandated to provide access to LEP individuals for over thirty-five years, OMB need not include any costs that recipients of federal financial assistance were already required to undertake in the costs of implementing EO 13166.

In addition to excluding the costs associated with ongoing compliance with Title VI, OMB should also exclude the costs of linguistic access required by other laws and/or policies. These include costs to comply with:

$ state and local laws/ordinances regarding language assistance and/or cultural competency;

$ federal and/or state contract requirements to provide language assistance and/or cultural competency; and

$ the requirements of accrediting organizations.

State Laws and Local Ordinances

A number of states and localities have applicable laws and ordinances which require providing language assistance and/or culturally competent care. For localities where such requirements exist independent of Title VI, OMB should not include these costs in the implementation of EO 13166.

In a 1998 study, NHeLP identified 151 state laws that require language services in health care, many tied to specific health services or providers. Six state laws set forth a general responsibility for health care facilities to ensure proper communication with non-English speaking providers BCA, FL, IL, NJ, NY, and VT. Since 1998, at least one state enacted a new law BMassachusetts now requires emergency rooms and acute-care psychiatric facilities to provide interpreters to LEP individuals. A listing of state law requirements addressing language and cultural needs in health care is attached as Appendix A.

Contractual Requirements

In addition to state laws and local ordinances requiring linguistic access, many states have addressed linguistic access in their contracts with health care providers. For example, states often require managed care organizations (MCOs) to provide translation services and address cultural competence, and presumably take these requirements into consideration in developing capitation rates. According to George Washington University's Center for Health Services Research and Policy, the majority of Medicaid managed care contracts or requests for proposals require MCOs to provide materials in other languages (38 states), require services for persons whose primary language is not English (31 states) or include a cultural competence requirement (27 states).

Accreditation Requirements

To obtain accreditation, the two major healthcare accrediting organizations require linguistic access for LEP individuals. The Joint Committee on Accreditation of Healthcare Organizations (which accredits hospitals and other health care institutions) and the National Committee for Quality Assurance (accrediting managed care organizations) both require language assistance in a number of situations.

Costs of Non-Compliance

In addition to excluding pre-existing costs for providing linguistic access under Title VI, state laws, local ordinances, contracts, and accreditation, OMB should also consider reducing any estimated costs of implementing EO 13166 by the costs of non-compliance with Title VI and the EO. Any estimation of the costs of non-compliance is complex and must include costs inherent in delays in seeking care, additional emergency room visits, malpractice claims, mis-diagnosis, unnecessary tests, and lost work days and productivity.

Lack of Interpreters Increases the Costs of Care

The most recent Census data publicly available documents over 32 million individuals who speak a language other than English at home. It is expected by all that this number will increase once the 2000 Census data is tabulated. While this reality can be viewed as a cultural strength of our nation, in the health care context, an individual's limited English proficiency often results in the provision of care based on inaccurate or incomplete information. Less obviously, it also increases the cost of care. Language barriers are a primary reason why non-English speaking populations disproportionately underutilize cost-effective preventive care. In addition, an inability to comprehend the patient mixed with a fear of liability leads some doctors to order expensive, otherwise avoidable tests.

Individuals who can not communicate with their providers often delay seeking necessary care. Language barriers are frequently cited by immigrants as a major problem in obtaining health care, as is actual or perceived discrimination by providers. According to the 1990 National Health Interview Study, immigrants, especially those who do not speak English, were far less likely to have seen a doctor than were citizens.

Yet individuals with unmet healthcare needs are more prone to suffering exacerbated health problems that require costly and avoidable emergency treatments. The unmet needs of individuals, in the aggregate, result in a health care system that is burdened by an increasing number of people with complex or multiple B and often preventable B chronic conditions. This creates a strain on personnel, resources, and financing. According to the Robert Wood Johnson Foundation, the unmet needs of individuals with chronic conditions lead to exacerbated health problems, costly treatments, and unnecessary pain and suffering.

The lack of access to care takes a serious toll on one's health. Individuals with reduced access to health care over many years, and in some cases for even relatively short periods, suffer deficiencies in their health as compared to individuals with regular access. Data on this issue is most prevalent when analyzing the lack of access of uninsured individuals. Their lack of access mirrors that of LEP individuals (both insured and uninsured) because neither group can access needed care B the uninsured because of barriers created by a lack of insurance and LEP individuals because of language barriers. For example, the uninsured are hospitalized 50%-70% more than the insured for "avoidable hospital conditions," such as pneumonia, and are more than twice as likely to be hospitalized for conditions which should be treated on an outpatient basis, like diabetes and malignant hypertension.

For individuals whose language barriers create an inability to understand their diagnosis or treatment, serious health consequences can result. For example, a Russian speaking patient profiled by the PBS program Healthweek was diagnosed with diabetes. Because the doctor did not ensure the patient understood his diagnosis and treatment, the patient left without knowing he had to change his diet to avoid further complications. A few months later, with his blood sugar levels dangerously high, and suffering bouts of dizziness and weakness, the patient returned to the doctor. With family members interpreting, he was finally able to understand his diagnosis. If he had not received treatment, he faced life-threatening complications B diabetes is the leading cause of new cases of blindness in adults age 20-74, of end-stage chronic irreversible kidney disease, and of lower-extremity amputations (not related to injury). According to the Centers for Disease Control and Prevention (CDC), many of the complications from diabetes can be prevented with early detection, improved delivery of care, and better education on diabetes self-management. The CDC estimates that at least half of the new cases of diabetes-related kidney failure, half of all lower extremity amputations and 90% of blindness could be prevented each year with early detection and treatment. The LEP patient's risk of complications is easily remedied B and further costs avoided B if interpretation is provided to explain the diagnosis and treatment.

Many other examples exist regarding diseases that require early treatment to alleviate further complications and costs. By providing interpreters to LEP individuals diagnosed with these diseases, the result can be a better quality of life as well as decreased health care costs. For example, early detection of cancer is crucial to obtaining life-saving treatment. Treatment of late-stage cancers yields a lower rate of remission and recovery than early intervention. And the costs of terminal care significantly exceed initial diagnosis and treatment costs. For individuals diagnosed with end-stage renal disease, dialysis treatments can enable them to maintain normal functioning and hold most symptoms at bay. Without dialysis, they will suffer recurrences of renal failure, or develop hypertension, which can lead to strokes or cerebral bleeding. Strokes or cerebral bleeding in turn induce a deterioration of health status, including the possibility of paralysis or loss of functional ability B conditions which would not have resulted had an individual received sufficient interpretation to explain the need for ongoing utilization of preventive care. In the absence of such interpretation, the costs of treating the complications often outweigh the costs of providing an interpreter.

In addition, a study conducted at the Boston Medical Center documents that the use of trained medical interpreters impacts Emergency Department (ED) services and reduces charges. Individuals who needed but did not receive interpretation returned to the ED more frequently and visited out-patient clinics less than those who obtained interpretation. In addition, these individuals received the fewest ED services and spent the least time in the ED, indicating that much of their treatment did not need ED attention but could have been addressed in clinics. Overall, the use of trained medical interpreters can increase the appropriate use of clinics, decrease expensive repeat ED visits, decrease the cost of care, and decrease disparities between English and non-English speakers in intensity of medical care received.

Additional information on the quality of care is provided in our answer to Q.7.

Lost Productivity

If an individual is unable to obtain appropriate access to needed care, the individual may miss unnecessary work days and endure decreased productivity. Further, an individual who does not access needed care, especially one with a chronic or potentially debilitating condition, may ultimately be unable to work to support his or her family, thus increasing the strain on the social welfare system. Thus, the lost productivity and work days of LEP individuals due to lack of access because of language barriers should also be factored in to offset costs associated with implementing the EO.

Legal Claims

The costs of non-compliance also include those associated with legal suits and malpractice claims brought against providers and others who fail to ensure a patient understands necessary treatment. For example, in a striking California case, a 51?year old mother of seven came to America as a refugee from Laos. She was diagnosed with tuberculosis. Her disease, which was not contagious at the time, was determined to be a drug?resistant form that required long?term therapy. But Mrs. Souvannarath ceased taking the medication because the side effects led her to believe the drugs were going to kill her. County health officials B one Hmong worker and one Thai, neither of whom spoke her language B could not explain the need for treatment and a Lao interpreter was never provided. County health authorities jailed Mrs. Souvannarath for failing to take her medications. At the jail, a Hmong officer who spoke no Lao misinterpreted for her. She thought he asked if she was afraid of dying so she said "yes". The actual question was if she was thinking of killing herself, and her "yes" answer led the jail to put her on a suicide watch. She was jailed for ten months without a proper court order. Attorneys representing Mrs. Souvannarath subsequently filed a federal complaint for damages and equitable relief that was ultimately settled for $1.2 million. Both the trauma to Mrs. Souvannarath and her family, as well as the resulting payment to her of $1.2 million, could have been easily avoided had an interpreter been provided.

Cost-Effective Methods of Providing Language Assistance

As noted above, many states already require linguistic access for LEP individuals in health care settings. While these costs should not be included in any estimates of implementing EO 13166 because they pre-existed the EO, the costs indicate that effective linguistic access is affordable and effective and ultimately results in cost savings on health care outlays.

In Washington state, state law requires language assistance. The state estimates that it will spend $24 million over two years for oral interpretation. With an estimated 26,000 encounters per month (or 624,000 encounters in 2 years), the average cost of providing oral interpretation is $38.46 per encounter. Massachusetts, which requires hospitals to provide interpreters in their emergency rooms and in-patient psychiatric facilities, has appropriated $1.1 million to implement the program next year.

In addition to state budgetary funding, federal funding is already available for providing linguistic access. Five states have availed themselves of the opportunity highlighted by the Centers for Medicare and Medicaid Services to obtain reimbursement for language assistance provided to Medicaid and SCHIP enrollees. Hawaii, Maine, Minnesota, Utah and Washington all ensure linguistic access and reimburse the costs of interpreters (either by directly paying interpreters or by reimbursing providers for the costs of hiring interpreters).

Some health plans, recognizing the business benefits and ultimate cost savings of ensuring linguistic access, have spent up-front budgetary funds to pay for interpreters. L.A. Care Health Plan recently implemented a training program for its providers and staff to certify them in medical interpretation. And the Alameda Alliance for Health has proposed incentives to providers for the appropriate use of interpreters B $30 per visit using an in-person interpreter and $20 per visit using a telephone interpreter on top of payments of the interpreter's fee.

7. Quantifying and describing the benefits to LEP individuals and society as a result of having oral and written translation services available, in accordance with Executive Order 13166.

First and foremost, the major benefit of having oral and written translation services available Bthrough Title VI as reemphasized by EO 13166 B is the quality of care that results. LEP individuals who can communicate effectively and accurately with their health care provider will reap the benefits of accessing preventive care, understanding their diagnosis and condition, making informed decisions about treatment options, recognizing the importance of monitoring a chronic condition and following through with recommended treatments.

In addition to the benefits directly ascribed to LEP individuals, providers will also garner benefits. Providers who ensure linguistic access insulate themselves from claims of malpractice and/or negligence. Providers will ensure their patients have given "informed consent" for needed tests, procedures and surgery. They will avoid complaints that the patient did not understand the doctor's diagnosis or recommended treatment. Further, a "business case" exists for ensuring linguistic access B providers can market themselves on their ability to ensure linguistic access and achieve a strong word-of-mouth reputation that will result in other LEP individuals seeking care from that provider. These steps can only help the economic viability of their practices. Thus, more than imposing costs, the EO serves a public awareness function by focusing on the need for linguistic access and highlighting the existing responsibilities of providers.

Quality of Care

Improvements in the quality of care LEP individuals receive will also be bolstered by full implementation of EO 13166. Preliminary findings from a study sponsored by the Robert Wood Johnson Foundation, How Language Barriers Hinder Access and Delivery of Quality Care, demonstrate the negative consequences created by language barriers. Twenty percent of Spanish-speaking Latinos surveyed reported not seeking medical treatment due to language barriers. Furthermore, the study documented that both patients and providers believe that language barriers present immense obstacles to achieving positive health outcomes. Among the results:

• 94% of providers said that communication is a top priority in delivering quality care and cited language barriers as a major challenge to delivering that care;
• 73% of providers say that a patient's understanding of treatment advice and of their disease is the most compromised aspect of care due to language barriers;
• 72% say barriers increase the risk of complications when the provider is unaware of other treatments being used; and
• 71% say that language barriers make it harder for patients to explain their symptoms and concerns.

According to a recent study by L.A. Care Health Plan, 51% of doctors surveyed said that their patients do not adhere to medical treatments because of culture and language barriers. When asked whether they considered language and cultural issues important in the delivery of care to patients, 71% said that it was very important and another 21% said it was important. Overcoming language barriers can have a dramatic impact on patients' adherence to medical treatments, with an expected rise in positive outcomes.

Business Case for Ensuring Linguistic Access

In an example of the "business case" for ensuring language access, many health providers are affirmatively hiring bilingual staff. For example, in Texas, the need for bilingual employees is fueled by the boom in the Hispanic population. Hispanics now make up 32 percent of Texas' population, and health care providers are competing for their business. To help meet the need for more competent bilingual health care providers, El Centro College begun offering Spanish courses for medical workers.

And as mentioned in our answer to Q. 6, both L.A. Care Health Plan and Alameda Alliance for Health have made business decisions that ensuring linguistic access will bolster their organizations' financial stability.

Public Awareness

While the requirements to ensure linguistic access have existed since 1964, many doctors remain unaware of them. For example, in a study conducted by L.A. Care Health Plan, less than 24% of physicians surveyed said they were familiar with existing laws. Thus, while EO 13166 does not result in any direct costs of implementation itself (see answer to Q. 6 above), it serves a significant public awareness function by bringing increased attention to the issue, including the statutory requirements to provide language assistance. For example, L.A. Care found that, of the physicians it surveyed:

• 82% would make use of translated material if made available to them;
• 58% would absolutely use interpreters if available to them with another 17% most likely to use them;
• 50% would like training on how to use interpreters;
• 49% would be interested in having their staff trained as professional interpreters; and
• over 40% would want training in cultural competency or materials on the topic.

8. Identifying any existing studies of the costs and benefits of improving the quality of communications and interactions between LEP individuals and the federal government or federally funded services. We are also interested in studies of similar language or translation issues internationally, (e.g. Canada, European Union, United Nations and OEDC).

We have provided the relevant information in our answer to Q. 10 below.

9. Identifying "real?world" case studies that illustrate the costs and benefits of providing translation services to LEP individuals, as envisioned by Executive Order 13166, and related agency guidance. We are seeking examples from multiple perspectives, including LEP individuals, federal agencies/recipients of federal funds, and the international context.

NHeLP has collected a number of "real-world" cases that illustrate the dramatic and sometimes life-threatening consequences to individuals' health and lives when linguistic access does not exist. We have included a sample of these cases below and attached additional ones as Appendix B.

The Dire Consequences of Care without Linguistic Access

As these and countless other examples illustrate, ineffective language assistance can have significant, even life-threatening, consequences.

$ a pregnant woman lost her baby when her doctor, using an untrained interpreter, failed to communicate adequately that she needed an immediate Caesarian section, and the woman returned home. Her child was ultimately stillborn.

$ despite statements that it used a language line when interpreters were unavailable, one hospital asked a Spanish-speaking nurse to interpret for a Bosnian patient.

$ a patient underwent a battery of expensive tests for angina after an emergency room physician misunderstood his complaints of "urgina" B Russian for sore throat.

$ a child being treated at a hospital had a feeding tube inserted without anyone explaining the procedure to his Spanish-speaking mother or obtaining her consent. When the child was sent home with an oxygen tank, no one explained to his mother how to operate it.

$ a bilingual Spanish-speaking patient in a hospital's ICU was asked by medical staff to interpret for another ICU patient.

For additional case studies, see Appendix B.

Using Family Members and Friends as Interpreters Is Not a Solution

In addition to the direct consequences an individual may suffer because language barriers hinder understanding a diagnosis or treatment, myriad direct and indirect costs arise when a family member and/or a friend attempts to interpret for a patient. Research and anecdotal information reveal many problems that result from this practice. These costs should also be discounted from any costs incurred by implementing EO 13166.

Adult family members and/or friends who serve as interpreters often do not accurately interpret, which can limit communication between a provider and patient. Untrained interpreters are prone to omissions, additions, substitutions, volunteered answers and other problematic practices. For example, family members/friends often do not understand the need for complete and accurate translation and may summarize information from the patient, inject their own opinions/observations, or impose their own values/judgments as they translate. Many family members/friends used as interpreters are themselves limited in their English language abilities and may be completely unfamiliar with medical terminology, which diminishes their capacity to accurately interpret. Further, this practice raises confidentiality questions, as many patients will not disclose sensitive or private information to family members/friends, resulting in incomplete information that can negatively impact a provider's ability to diagnose a condition.

The implementing guidance from HHS' Office for Civil Rights recognizes the drawbacks of using family members/friends and encourages the use of trained interpreters whenever possible. Thus the EO and implementing guidance educate providers about the need for heightened awareness of the problems that can arise from the use of family members/friends and of the benefits of using trained interpreters.

While many problems exist with the use of adult family members/friends as interpreters, when the interpreter is a minor, additional concerns arise, including:

$ requiring children to take on additional burdens, decision-making and responsibilities;

$ causing friction and a role reversal within the family structure, which can even lead to child abuse situations; and

$ violating beneficiary confidentiality, which can lead to inadequate services or mistakes in the provision of services.

Children who interpret for their LEP parents act as "language brokers" and informally mediate, rather than merely interpret or translate information. Children who act as language brokers often influence the content of the messages they translate, which in turn affects the ultimate decisions of their parents.

A Los Angeles Times article about children who translate for their parents illustrates the potential for harm: a 13-year-old boy described feeling tongue-tied on a recent visit to a health clinic with his mother when the doctor asked him to explain the medicine that the doctor was prescribing to the child's mother. The potential for harm is exacerbated when providers

use children to translate in gynecological or reproductive health settings, as in this situation: a provider performing an ultrasound on a pregnant LEP patient instructed the patient's seven-year-old daughter to tell her mother that the baby was stillborn. Only when the daughter became upset and refused to interpret the message was a professional medical interpreter called.

Further exemplifying the problems of using children as interpreters, a study of 150 Vietnamese- and Mexican-American women who are or had been welfare recipients in California found that more than half (53.3%) used their children to translate for them. Most use their children for communicating with schools and government agencies, and filling out forms. More than half of the women who use their children as interpreters identified problems with this practice. The top four problems were:

$ the child translated incorrectly;

$ the child left out information;

$ the information was too technical for the child; and

$ the child was unable to properly translate due to limited English skills.

Additionally, several of the Mexican-American women reported that their children sometimes answered questions without first checking with them.

The following case study provides a first-hand account of the emotional toll interpreting takes on a child. It was written as an op-ed by a 17-year old junior at Galileo High School in San Francisco.

"My mom has cancer. I still remember when I accompanied her to San Francisco General Hospital for the first time last year. My older sister couldn't come home from college, so I had to get out of school. It was my turn to interpret.

"I don't much like sitting in the hospital with my mother. I'd rather be in school or hanging out with friends. But, since she does not speak English, my mom wouldn't understand what was going on without one of us there. Thankfully, my sister had been with my mom when she was first diagnosed. I don't think I could have handled that. We waited for what seemed like hours. I had just gotten up to walk around, when my mother suddenly called me back. The doctor had arrived.

"I explained to the doctor that my mother only speaks Cantonese, and that I would have to interpret for her. I also wanted to tell him that I didn't want to be there, that a public hospital in a city where so many people are not fluent in English should have someone on staff available to speak directly to my mother. But I kept that to myself. The doctor looked only at me and began to talk about my mom's medical condition. He seemed used to explaining all of this to a child. He tried to use simple words. My mom kept staring at me with worried eyes as he was speaking, not understanding a word.

"Then he said it B despite her radiation treatment, my mother's cancer would require surgery. I looked at my mom, searching for the words in Cantonese that could communicate what the doctor had explained to me. I didn't know the Cantonese terms for the organ parts he described. I didn't know how to say "chemotherapy." I didn't know how even to say "surgery." So instead, I had to resort to a crude description of what would happen. I had to tell her that there would be needles, and knives, and incisions into her body. My mother began to weep and kept asking me if she was going to be okay. And I didn't know how to console her.

"My family left Vietnam when I was just 15 days old. Ethnically Chinese, we speak Cantonese in our home. While both of my sisters and I are completely fluent in English, my parents prefer to speak in their native language. With all of their responsibilities and the pressure to support a family in a country to which they came with nothing, as political refugees, they have had little time to take English classes. Instead, their children are their eyes and ears to the outside world.

"Now that my older sister has moved out of the house, I translate for them every single day Bbills, government letters, applications, pretty much anything mailed to our house in English. While my English is very good, my parents often do not understand why I sometimes don't know what an English word means, let alone how to say it in Cantonese. They do not understand how much pressure I feel when their well?being depends on me. When my father was recently pulled over by a police officer, I was in the car and I had to speak on his behalf. But I didn't know how to translate what was on the ticket. The police officer scolded me for taking too long. When my parents have to go to the DMV to get a driver's license, either my older sister or I go with them.

"Since my mother became ill, I have felt the need to speak up not only for my parents, but also for all of my peers who share this responsibility of being a voice for their parents. I want families like mine to be able to communicate with government agencies without having to depend on children. Our families work hard jobs, pay taxes, and contribute to the community in many ways. Our parents deserve to have access to basic services.

"When people say that the government should provide services only in English, they do not understand that they may be putting their own health or safety at risk when doctors cannot communicate with patients or police officers cannot speak to residents.

"My younger sister, who is 13, is beginning to take on some of the translation responsibilities. I am glad she is around. When I move out, there will still be someone at home to translate for my parents. I don't know what will happen when she finally leaves the house too."

10. Identifying existing academic research and "real?world" case studies from the following sectors: health, social services/income maintenance, education, transportation, law enforcement and trade, as well as recommendations of additional sectors or perspectives from which to address this issue.

A forthcoming study from The Access Project surveyed uninsured individuals who had received care in the previous year. Analysis compared those who did not need an interpreter, those who needed and received an interpreter and those who needed but did not receive an interpreter. A higher proportion of individuals needing and receiving an interpreter rated their experiences with medical staff and support staff as "satisfactory" or "very satisfactory" than individuals needing but not receiving interpreters and individuals not needing interpreters. Further, individuals needing but unable to receive interpreter assistance were more likely to find their encounters with medical staff moderately but significantly more unsatisfactory than those not needing interpreters and those needing and receiving an interpreter. Additionally, over 25% of those needing but not receiving an interpreter did not understand their medication instructions, compared with about 2% for each of the other groups.

The California Primary Care Association (CPCA) recently released Providing Health Care to Limited English Proficient (LEP) Patients: A Manual of Promising Practices. This report outlines steps that members of CPCA B primarily community health centers B have taken to ensure linguistic access of LEP individuals.

11. Identifying any other information or resources that the public believes will assist us in our efforts to assess the benefits and costs of Executive Order 13166.

The Center for Immigrant Health at New York University is collaborating with Gouverneur Hospital in New York City to expand a pilot simultaneous translation program,Technology/Team Enhanced Medical Interpretation System (TEMIS). A preliminary analysis from a cost?effectiveness (time?motion) study should be available in January. The contacts are Javier Gonzalez, Director, Language Initiatives Center for Immigrant Health, New York University School of Medicine, 212?263?8242 and the Medical Director for the Program, Dr. Francesca Gany, 212-263-8242.

The full results from the Robert Wood Johnson Foundation's study (see Q. 7) on "How Language Barriers Hinder Access and Delivery of Quality Care" will be available in early 2002. The contact persons are Paul Tarini and Pamela Dickson at 609-452-8701, www.rwjf.org..

Conclusion

We appreciate the opportunity to submit these comments to OMB and look forward to working with OMB to implement EO 13166 and the Department's LEP guidances to guarantee full and equal health care access to all LEP individuals. If the National Health Law Program can provide any additional assistance, please contact us at 202-289-7661.

Sincerely,

Mara Youdelman
Staff Attorney
National Health Law Program

The undersigned organizations support the comments submitted by NHeLP:

Alliance for Children and Families
Asian & Pacific Islander American Health Forum
Asian Health Services
Asian Pacific American Legal Center
Association of Asian Pacific Community Health Organizations
Bay Area Legal Aid
California Healthcare Interpreters Association
California Pan/Ethnic Health Network
California Women's Law Center
Center for Civil Justice (Saginaw, MI)
Chinese for Affirmative Action
Consumer Subcommittee, Pennsylvania Medical Assistance Advisory Committee
Families USA
Florida Legal Services
Greater Hartford Legal Assistance
Health Care Organizing Project (RI)
The Legal Aid Society, NYC
Maryland Disability Law Center
Mental Health Legal Advisors Committee (Boston, MA)
Michigan Legal Services
National Abortion and Reproductive Rights Action League
National Association of Protection and Advocacy Systems
National Center for Youth Law
National Council on Interpreting in Health Care
National Immigration Law Center
National Minority AIDS Council
National LEP Advocacy Task Force
National Senior Citizens Law Center
National Women's Law Center
New York Immigration Coalition
New York Lawyers for the Public Interest
Northwest Health Law Advocates
Ocean State Action (Cranston, RI)
PALS for Health (Los Angeles, CA)
Protection & Advocacy, Inc. (California)
Public Justice Center (Baltimore, MD)
Senior Citizens Law Project of Vermont Legal Aid, Inc.
Southern Poverty Law Center
Summit Health Institute for Research and Education
Tennessee Justice Center
University Legal Services (Washington, DC)
Virginia Poverty Law Center

Appendix A:

Summary of State Laws/Local Ordinances Requiring

Language Assistance and/or Cultural Competency

This Appendix includes two documents: a summary of state laws from NHeLP=s 1998 report, Ensuring Linguistic Access in Health Care Settings: Legal Rights and Responsibilities (Kaiser Family Foundation, January 1998); and a chart with selected state laws and local ordinances enacted since publication of NHeLP=s report.

Both charts demonstrate that the obligation to provide linguistic access and cultural competency is widespread and existed long before EO 13166.