Ethics of Special Needs for School Nurses in a Public Health Emergency Laura M. Stough Center on Disability and Development Texas A&M University lstough@tamu.edu 979-845-8257

Photos credit the Associated Press

http://www. gov. state. la. us/index. cfm http://www.gov.state.la.us/index.cfm?md=photogallery&tmp=home&navID=10&cpID=0&cfmID=0&catID=1

http://www.gov.state.la.us/assets/images/photogallery/Katrina/8.28.07.jpg

Photos from: http://www.nod.org/katrinaphotos/katrina9.jpg

A rescuer carries a young man who is unable to walk to safety. - Retrieved from FEMA Photo Library 2006.

Deaf section for Hurricane Katrina evacuees at the Houston Astrodome Deaf section for Hurricane Katrina evacuees at the Houston Astrodome. (Houston, TX., 9/10/2005 -- FEMA photo/Andrea Booher)

Tanisha Blevin, 5, holds the hand of fellow Hurricane Katrina victim Nita LaGarde, 105, as they are evacuated from the Convention Center in New Orleans, La., Saturday, Sept. 3, 2005. (AP Photo/Eric Gay )

Defining Disability Mashaw and Reno (1996) document over 20 definitions of disability used for purposes of entitlement to public or private income support programs, government services, or statistical analysis

Census Bureau (2000) A person with a disability has difficulty in performing functional tasks or daily living activities or meets other criteria, such as a learning or developmental disability. Persons with severe disabilities are defined as being completely unable to perform one or more of these tasks or activities, need personal assistance or have one of the severe conditions identified by the census.

Who are People with Disabilities?

Using traditional labels, people who have… Mobility impairments Visual impairments Hearing impaired or Deaf Intellectual disabilities Mental illness Traumatic brain injury Other health impairments

From left to right: http://www. photolibrary. fema

Students with Disabilities Pervasive developmental delay Intellectual disabilities (mental retardation) Autism Speech impairments Emotional disturbance/behavior disorders Traumatic brain injury Learning disabled Deaf or hearing impaired Blind or visually impaired Other health impaired: Hospitalized, asthma, ADHD

Statistics on Individuals with Disabilities 12.6% of the working age population 12% of the school-aged population 16.7% of the total population 21.3% (almost 250,000) of the residents of the New Orleans metropolitan area described themselves as disabled in the 2000 Census.

Participants and Method Survey of people New Orleans who were evacuated to the Astrodome and other large facilities in Houston about their reasons for not evacuating in anticipation of the hurricane. Took place Sept. 10-12, 2005 among 680 randomly selected adult evacuees residing in Houston shelters. Interviews were conducted face-to-face.

As part of survey results… - 35% responded that: “I did not have a car or a way to leave.” - 38% responded that: “I was physically unable to leave” or “I had to care for someone who was unable to leave.” (Survey of Hurricane Katrina Evacuees, Sept. 2005)

Research on Risk Factors Individuals with mobility impairments Those without transportation People from lower SES groups Non English speakers Single heads of household

Post disaster vulnerability PTSD Alcoholism and substance abuse Family violence Secondary disabilities

Laws that Influence Disaster Response and Recovery

The ADA The Americans with Disabilities Act of 1990 (ADA) is the short title of United States Public Law 101-336, signed into law on July 26, 1990 by President George H. W. Bush. The ADA is a wide-ranging civil rights law that prohibits, under certain circumstances, discrimination based on disability. It affords similar protections against discrimination to Americans with disabilities as the Civil Rights Act of 1964, which made discrimination based on race, religion, sex, national origin, and other characteristics illegal.

According to the ADA, who is considered to have a disability? Disability is defined as "a physical or mental impairment that substantially limits a major life activity."

A “Major Life Activity” involves functions or activities that are of central importance to daily life such as: Caring for one's self Performing manual tasks Walking Seeing hearing Speaking Breathing Learning Working

Emergency Management Under Title II of the ADA Chapter 7 Emergency Management Under Title II of the ADA

Basics for Emergency Management State and local governments must comply with Title II of the ADA in the emergency and disaster-related programs, services, and activities they provide This requirement applies to programs, services, activities provided directly by state and local governments, as well as those provided through third parties, such as the American Red Cross, private nonprofit organizations, and religious entities

This includes… Advance planning for emergencies and disasters Staging emergency simulations Alerting the public to emergencies and disasters and to available programs, services, and activities Community evacuation and transportation Emergency shelter programs Temporary lodging and housing Social services and emergency- and disaster-related benefit programs

This includes… Emergency medical care and services Relocation programs, activities, and services Transition and transportation back to the community following an emergency or disaster Emergency and disaster recovery programs, services, and activities, and Remediation of damage caused by emergenicies and disasters

Basics for Emergency Management Emergency programs, services, activities, and facilities must be accessible to people with disabilities and generally, May not use eligibility criteria that screen out or tend to screen out people with disabilities

Basics for Emergency Management The ADA requires making reasonable modifications to policies, practices, and procedures when necessary to avoid discrimination again a person with a disability and, taking the steps necessary to ensure effective communication with people with disabilities

Basics for Emergency Management The ADA generally does NOT require state or local emergency management programs to take actions that would fundamentally alter the nature of a program, services, or activity or impose undue financial and administrative burdens.

The Stafford Act The Robert T. Stafford Disaster Relief and Emergency Assistance Act (Stafford Act) is the law that authorizes Federal assistance when the President declares a State to be a disaster area. Section 308 of the Stafford Act protects individuals from discrimination on the basis of their race, color, religion, nationality, sex, age, or economic status in all disaster assistance programs. Section 309 of the Stafford Act applies these non-discrimination provisions to all private relief organizations participating in the response and recovery effort.

The Stafford Act Sec. 689(a) requires the FEMA Administrator to “develop guidelines to accommodate individuals with disabilities… guidelines include ‘the accessibility of, and communications and programs in, shelters, recovery centers, and other facilities; and devices used in connection with disaster operations, including first aid stations, mass feeding areas, portable payphone stations, portable toilets, and temporary housing.’ Section 689(c) amends the Stafford Act’s Federal Assistance to Individuals and Households program (§408) to recognize that damage can render a home inaccessible to disabled persons, and thus, uninhabitable to them. Accordingly, temporary housing assistance can be provided to individuals with disabilities whose residence is rendered “inaccessible” as a result of a major disaster. Further, in locating readily fabricated dwellings, FEMA must now seek whenever practicable, sites that – “[meet] the physical accessibility requirements for individuals with disabilities.”

Equal Opportunities Act FEMA and other federal or state agencies are equal opportunity employers. FEMA will provide reasonable accommodations for employees and other individuals with disabilities. FEMA must serve all individuals equally, providing access to Agency programs and activities equal to the access provided to non-disabled persons.

Emergency Shelter Programs Regardless of who operates a shelter, the ADA requires shelter operations to be conducting in a way that offers people with disabilities the same benefits provided to people without disabilities

Advance Planning The most effective way for public health care workers to ensure that advance planning addresses the needs of people with disabilities is to involve community members with a wide variety of disabilities in the advance planning process. Why?

Because individuals with disabilities will be able to identify the types of disability-related needs that community residents and visitors are likely to have during emergencies as well as some of the community resources that may be available to help meet those needs.

Eligibility Criteria Two categories of shelters Considerations Mass Care Shelters Serve general populations Special Needs/Medical Shelters Provide heightened level of support Considerations Respect the right of IWD to make choices IWD who have support needs can often be housed in mass care shelters

Texas’ Hurricane Sheltering Plan Types of Medical Special Needs Persons Level 0: Persons who have no medical needs, but require transportation assistance for evacuation. Level 1: Persons dependent on others or in need of others for routine care (eating, walking, toileting, etc.) and children under 18 without adult supervision. Level 2: Persons with physical or developmental disabilities such as blindness, significant hearing impairment, amputation, deaf/blind, and mental retardation. Level 3: Persons requiring assistance with medical care administration, monitoring by a nurse, dependent on equipment (including dialysis),assistance with medications, and mental health disorders. Level 4: Persons outside an institutional facility care setting who require extensive medical oversight (i.e. IV chemotherapy, ventilator, life support equipment, hospital bed and total care, morbidly obese). Level 5: Persons in institutional settings such as hospitals

Texas’ Hurricane Sheltering Plan Levels 1, 2 who can live independently or who have care givers accompanying them may be housed in a general population shelter. Facilities should provide nearby space for care givers, family members, and provide appropriate care for companion pets. Level 3 and levels 1 and 2 without care giver support will be housed in a medical special needs shelter or in designated areas within a general population shelter. Facilities should include space for care givers, family members, and provide appropriate care for companion pets. Level 4 will be housed in an acute care hospital or long-term care facility. Level 5 will be a facility-to-facility transfer (i.e. hospital to hospital, long term care to long term care, assisted living to assisted living, etc.)

Supporting Children with Disabilities during and post disaster

Eligibility ADA requires people to be accommodated in the most integrated setting appropriate to their needs Students should generally be housed with their families, friends and neighbors Shelter operators may not make eligibility dependent on a child’s ability to bring their own attendant

Eligibility Ensure that Special Needs and Medical Shelters have sufficient numbers of adequately trained medical staff/volunteers before placing students Keep families or students with their caretakers together whenever possible, which will usually be in a general needs shelter

Triage of Care Students with disabilities should receive same precedence of care as those without disabilities. Students with disabilities living in the community predisaster may require more non medical supports. Most students with disabilities will not need a medical special needs shelter.

Images retrieved from FEMA Photo Library 2007.

Effective Communication Provide explanations to children of what is occurring. Provide alternate format materials for students with disabilities (blind, low vision) Ensure that audible information is accessible to students who are deaf/hard of hearing

Supplies Provide an effective way for children to stay with and receive durable medical equipment and medical supplies If possible, provide refrigeration for meds If electricity is available, give priority to those who use ventilators, suction devices, etc Provide food options to those children with dietary restrictions Provide emergency supplies that enable care for service animals

From left to right: http://www. photolibrary. fema

Post disaster Reconnect children with their families Make sure that services the child was receiving pre-disaster are reconnected post-disaster Support the parents and caretakers as a form of supporting children

Remember your own family! Create a disaster preparedness plan Have back-up support for your own childcare needs so that you will be able to offer support to other children Keep yourself healthy and do not work with disaster survivors if you are ill Discuss with your family your role in disaster response and recovery and get their understanding and “buy in”

Disaster Acronym Guide: Translations for Two Communities that Love Alphabet Soup

Long Term Recovery from Hurricane Katrina Funded by the National Center on Birth Defects and Developmental Disabilities through the Centers for Disease Control and Prevention With support by the Association of University Centers on Disability

Photo by Kendall Kessel; April 2006

Photo by Kendall Kessel; April 2006

Contact Info Center on Disability and Development at Texas A&M University http://.cdd.tamu.edu Project REDD http://redd.tamu.edu