Rights Responsibilities

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• Rights Responsibilities Solutions
• Avoid Disasters for the Special Needs Population
• Comply with the HIPAA Privacy Rule
• Linda Sanches, Senior Advisor, HIPAA Privacy
  Outreach Training
• Eileen Hanrahan, Senior Civil Rights Analyst
• Office for Civil Rights, U.S. Department of
  Health and Human Services
• February 5, 2008
• National 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 populationfunctional
  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 disclosed
• How information must be protected
• New training, staffing, information management,
  contracts, policies and procedures
• Establishes rights for individuals
• Access, correct, control, complain
• Enables HHS to enforce these requirements

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Who is Covered by the Privacy Rule? Covered
Entities

• 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

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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 associates
• Protections 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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When Can Information Be Shared?

• 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
  purposesrequirements apply to each type

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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 Notification

• As 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 individuals location in the facility, and
• The individuals 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

• 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.

• 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

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

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

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

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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/allp
  ubs/SMA03-
• 3828/default.asp