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Rights Responsibilities & Solutions: Rights Responsibilities & Solutions: Avoid Disasters for the Special Needs Population Avoid Disasters for the Special Needs Population

& Comply with the HIPAA Privacy Rule& Comply with the HIPAA Privacy Rule

Linda Sanches, Senior Advisor, HIPAA Privacy Outreach & Training Eileen Hanrahan, Senior Civil Rights AnalystOffice for Civil Rights, U.S. Department of Health and Human Services

February 5, 2008National Emergency Management Summit

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Topics

What does OCR do

HIPAA

HIPAA Privacy Rule basics Sharing of health information in a disaster Sharing information for emergency preparedness

Special needs population Who is the special needs population—functional approach How the civil rights laws apply to persons with special needs in an

emergency Strategies for addressing their needs in an emergency

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OCR Protects Through Enforcement

Section 504 of the Rehabilitation Act of 1973 (disability)

Title II of the Americans with Disabilities Act of 1990 (disability)

Title VI of the Civil Rights Act of 1964 (race, color, & national origin)

Age Discrimination Act of 1975 (age) Health Insurance Portability and

Accountability Act of 1996 (privacy) Patient Safety and Quality Improvement

Act of 2005 (confidentiality)

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How OCR Protects Civil & Privacy Rights Resolving Complaints: people who believe that they have been

discriminated against or the law otherwise has been violated may file complaints with OCR

Opening compliance reviews: OCR may initiate a civil rights review of a program that receives HHS funds or a Privacy Rule review of any covered entity

Conducting pre-Grant reviews: OCR conducts civil rights reviews of health care providers who are applying to participate in the Medicare Part A program

Offering technical assistance: OCR provides resources, training, and outreach materials

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What If an OCR Investigation Indicates Noncompliance?

Emphasis on voluntary compliance through corrective action and resolution agreements

Civil Rights Enforcement Terminate HHS funding Refer to Department of Justice for enforcement

Privacy Enforcement Assess civil money penalties

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Recent Emergency Responses Suggest Privacy Compliance Strategies Are Incomplete Some paramedics have refused to disclose information to

emergency medical providers Some state and local authorities have been unable to confirm that

their requests for information from providers for planning activities are permitted by HIPAA.

Some emergency responders have refused to make disclosures because they mistakenly believe that they are subject to the HIPAA Privacy Rule

Federal “Lessons Learned” reports note frequent misunderstanding.

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Basic Construct of the HIPAA Privacy Rule

Creates a nationwide baseline of privacy protections for health information

Sets standards When information can be used or disclosedHow information must be protected New training, staffing, information management, contracts,

policies and procedures

Establishes rights for individualsAccess, correct, control, complain

Enables HHS to enforce these requirements

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Health plans

Health care providers who transmit health information electronically in connection with standard transactions (e.g., billing).

Health Care Clearinghouses

Health Plans include

employer sponsored health plans, health insurance companies, HMOs

certain government programs that pay for health care, such as Medicare &

Medicaid

Providers include

most doctors offices, pharmacies, hospitals, clinics, nursing homes,

many other health care providers

Who is Covered by the Privacy Rule? Covered Entities

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What is covered? Protected Health Information

Individually identifiable health

information (other than education, employment records)

Transmitted or maintained in any form or medium

By covered entities or their business associatesProtections do not follow information once released to persons not covered by HIPAA

This includes Medical records Conversations the doctor has

about care or treatment with nurses and others

Information about members in health insurer's computer system

Billing information about patients at a health clinic

Most other health information held by those who must follow this law

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The Rule permits sharing For treatment, payment, and health care operations purposes To the individual Pursuant to a valid written authorization When the individual agrees, or does not object in circumstances that

give the individual an opportunity to agree or object Relevant information to family or friend caregivers; hospital

directories

For specific public policy purposes, such as public health or law enforcement purposes—requirements apply to each type

When Can Information Be Shared?

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Can Health Information Be Shared in a Severe Disaster?

Yes, for these purpose:

Treatment Notification To address imminent danger Facility directories Public health

Of course, the HIPAA Privacy Rule does not apply to

disclosures if they are made by entities not covered by the

Privacy Rule. So the HIPAA Privacy

Rule does not restrict the American Red Cross from

sharing patient information.

http://www.hhs.gov/ocr/hipaa/KATRINAnHIPAA.pdf

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Permitted Disclosures: Treatment

Sharing information with other providers

hospitals, clinics, emergency shelter nurses Referring patients for treatment

linking patients with providers where patients have relocated

Coordinating patient care with others

emergency relief workers, others finding health services

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Permitted Disclosures: NotificationAs necessary to identify and locate family members, guardians, or anyone else responsible for the individual's care, and notify them of the individual's location, general condition, or death

In emergency, hospital may notify the police, the press, or the public at large as appropriate

May share information with disaster relief organizations that, like the American Red Cross, are authorized by law or by their charters to assist in disaster relief efforts

No need to obtain a patient's permission if doing so would interfere with the organization's ability to respond to the emergency

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Permitted Disclosures: Others IMMINENT DANGER: Providers can share patient information with

anyone as necessary to prevent or lessen a serious and imminent threat to the health and safety of a person or the public -- consistent with applicable law, ethical standards.

FACILITY DIRECTORY: Health care facilities maintaining a directory of patients can tell callers (if patient does not opt-out):

Whether an individual is at the facility, The individual’s location in the facility, and The individual’s general condition

“he is in the ICU in stable condition”

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Is the HIPAA Privacy Rule Suspended During a National or Public Health Emergency?

Only applies to certain hospitals, for 72 hours

Only applies re: certain provisions, such as notice

distribution, facility directory opt-out.No, although the Secretary may

waive imposition of penalties against covered entities that do not comply with certain provisions of the Rule

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Can Health Care Providers Share Information for Emergency Preparedness Activities?

Yes, when The disclosure is made for

public health purposes to an appropriate public health authority

An entity that is authorized by law to coordinate disaster relief planning may be a public health authority

Many emergency preparedness activities are public health

activities (e.g., those that prevent or control disease, injury or

disability) Public health authorities must be

authorized by law to collect or receive such information for the

purpose of preventing or controlling disease, injury, or

disability, including the conduct of public health interventions.

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Understanding the Privacy Rule Enables Appropriate Services for the Special Needs Population

Privacy Rule may permit providers to disclose information about their patients for public health preparedness activities.

These issues are especially important for providers and planners seeking to effectively serve the special needs population.

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Avoid Disasters for the “Special Needs Population”

Effective planning, response, and recovery for the special needs population, consistent

with Federal civil rights laws

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Who Is the Special Needs Population?

Many definitions of “special needs population,” “at-risk population,” and “vulnerable population” exist.

In the National Response Framework, the Federal Government has adopted a single function-based definition.

A single definition allows for consistency of intergovernmental planning and exercises to ensure the safety and security of all.

A function-based definition establishes a flexible framework that addresses common needs irrespective of specific diagnosis, statutes or labels.

It provides useful information to emergency planners and responders that mere labeling does not.

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Definition of Special Needs Population in the National Response Framework

Before, during, and after an incident, members of this population may have additional needs in one or more of the following functional areas: Maintaining independence, communication, transportation, supervision, and medical care. Individuals in need of additional response assistance may include those who:

Have disabilities Live in institutionalized settings Are elderly Are children Are from diverse cultures Have limited English proficiency or are non-English speaking Are transportation disadvantaged

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We Will Focus on Three Populations That Are Protected by

Federal Civil Rights Laws

Persons with disabilities Persons from diverse racial/ethnic origins, including Limited

English proficient (LEP) persons

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Special Needs PopulationFacts and Figures

In 2000, 18% of the population (47 million people) spoke a language other than English at home.

63% of hospitals treat LEP patients daily or weekly. Nearly 40 million people have one or more disabilities. 40% of the population over 65 has one or more disabilities. In 2000, persons who were African American, Hispanic or Asian

comprised nearly a third of the population. This percentage is projected to increase through 2050.

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The Experience of These Populations in Emergencies

Historically, emergency preparedness activities have lacked sufficient focus on individuals with special needs.

As a result, these populations often: Did not receive important information about emergencies; Were not evacuated; Were unable to access shelters; and Failed to receive needed services, including medical assistance.

Many Hurricane Katrina “lessons learned” reports noted the importance of including the special needs population in planning, response, and recovery efforts for those efforts to be successful.

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What Civil Rights Laws Apply to These Populations?

Title VI of the Civil Rights Act of 1964 (Title VI) prohibits discrimination on the basis of race, color, or national origin by recipients of Federal financial assistance.

Section 504 of the Rehabilitation Act of 1973 (Section 504) prohibits discrimination on the basis of disability by recipients of Federal financial assistance.

Title II of the Americans with Disabilities Act of 1990 (ADA) prohibits discrimination on the basis of disability by public entities, whether or not they receive Federal financial assistance.

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Standards under the Federal Civil Rights LawsDisability Discrimination

Section 504 and Title II implementing regulations: Different treatment on the basis of disability Actions that have the effect of discriminating on the basis of

disability Program accessibility Provision of auxiliary aids and services where necessary to afford

equal opportunity, unless undue burden or fundamental alteration Modification of policies, practices, and procedures where necessary

to avoid discrimination, unless fundamental alteration Administration of services in the most integrated setting appropriate

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Standards under the Federal Civil Rights LawsRace, Color, and National Origin Discrimination

Title VI implementing regulation: Different treatment on the basis of race, color, or national origin Actions that have the effect of discriminating on the basis of race,

color, or national origin May include the failure to take reasonable steps to provide LEP

persons meaningful access to the program

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How Service Providers Can Effectively Address Functional Needs in an Emergency,

Consistent with Federal Civil Rights Laws

Strategic planning Location and assessment of the special needs population Communication Avoidance of separation of individuals from their sources of support

or assistance Integration Accessibility Recovery

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Strategic Planning

Include people with special needs in planning and exercises Know your partners and collaborate in developing plans Know what resources are available to you in an emergency Develop protocols and procedures for providing services and

obtaining resources Communicate your emergency plan to response and community

stakeholders Identify and maintain access to expertise about people with special

needs for all staff up and down the line

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Location and Assessment

Coordinate with state and local emergency management officials Know the populations - population survey data Know the functions with which people may need assistance - use of

individual intake and assessment tools Consider using a voluntary registry to identify persons with special

needs

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Communication Coordinate with community and faith-based organizations Use multiple, accessible communication mechanisms, such as:

Large print/audio for persons who are blind or have low vision Interpreter services for deaf/hard of hearing or LEP persons, such as

language banks, telephonic interpreter services, bilingual staff, contract or volunteer interpreters

Picture boards Captioning of televised messages Translation of written emergency information into other languages Short, simple communication scripts, repeated frequently

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Avoidance of Separation from Sources of Support or Assistance

Durable medical equipment (wheelchairs, walkers, scooters, catheters, ostomy supplies, etc.)

Service animals Caregivers and attendants,

family members and companions Medication, supplies

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Integration

Avoid isolation of individuals with

special needs unless necessary Avoid misdirecting individuals to

higher levels of care than what they need,

such as hospitals, acute care facilities,

or medical shelters Provide access to appropriate equipment,

medication, personnel or other resource support

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Accessibility

Transportation Secure accessible transportation (lift equipped) for the individual and his

or her equipment, service animal, or caregiver Ensure trained personnel to operate the vehicle

Evacuation Arrange an inspection by emergency management or firefighting

officials Inform affected persons about the plan as early as possible Employ procedures for 100% accountability

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Accessibility

Sheltering Accessible facilities/programs Alternative sources of power Bathing and toileting facilities Beds Supplies and equipment Hospitals, congregate care facilities

and sheltering in place

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Recovery

Accessible housing and transportation Continuity of health care and human services Supports for everyday life Community connections

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Emergency Preparedness Resources

HIPAA Privacy and Civil Rights

http://www.hhs.gov/ocr/hipaa/emergencyPPR.html

www.hhs.gov/od/emergencypreparedness.html

http://mentalhealth.samhsa.gov/publications/allpubs/SMA03-3828/default.asp