Ethics of Special Needs for School Nurses in a Public Health Emergency Laura M. Stough, Ph.D. Center on Disability and Development Texas A&M University

Photos credit the Associated Press

Objectives for this Training 1.Identify prevalence of individuals with disabilities in the general population and in the local population. 2.Understand laws pertaining to emergency rescue, response, and recovery services for individuals with disabilities. 3.Understand socioeconomic and political factors affect how people are impacted by disaster. 4.Understand the differential effects of disaster on individuals with disabilities. 5.Identify considerations in providing equitable health services to individuals with disabilities.

Who are People with Disabilities and People with Functional or Access Needs?

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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

Definition of Disability (ADA) A physical or mental impairment that substantially limits one or more major life activities of such individual; A record of such an impairment; or Being regarded as having such an impairment.

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

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

From left to right: ails.do?id=18526; ails.do?id=15343.

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

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

The National Response Framework states that individuals with disabilities or functional needs may have additional needs before, during and after a disaster in five functional CMIST areas: Communication Medical care Maintaining Independence Supervision Transportation

Who May Need FNSS? Children and adults requiring FNSS may have: Physical disabilities Sensory disabilities Mental health, cognitive and/or intellectual disabilities Chronic health care needs Others who might benefit from FNSS could include: Seniors Women in late stages of pregnancy Non-English speakers People who are homeless

Laws that Influence Disaster Response and Recovery Services

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

The ADA The Americans with Disabilities Act of 1990 (ADA) refers to United States Public Law , 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.

Implications for Emergency Programs State and local governments must comply with Title II of the ADA in the emergency and disaster-related programs, services, and activities they provide 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

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 This requirement includes those provided through third parties, such as the American Red Cross, private nonprofit organizations, and religious entities

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.

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.

National Preparedness Goal Paradigm shift to the concepts of inclusion and whole community preparedness Includes children, individuals with disabilities and others with access and functional needs, diverse communities, and those with limited English proficiency. Accessible public information and warning Accessible housing

Whole Community Participation of the whole community requires: Equal access to preparedness activities and programs without discrimination Meeting the access and functional needs of all individuals Consistent and active engagement and involvement in all aspects of planning.

Differential Effects of Disaster on Vulnerable Populations

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, (AP Photo/Eric Gay )

Vulnerable populations are often constrained by… Poverty Physical disabilities Mental illness Health issues Low English proficiency Transportation disadvantages Age …and combinations of the above variables

Research on Vulnerable Populations Individuals with mobility impairments Those without transportation People from lower SES groups Elderly adults Single heads of household Immigrant populations

What are the Effects of Disaster on Children with Disabilities?

Post Disaster Vulnerability Access to services Secondary disabilities PTSD Depression Alcoholism and substance abuse Family violence

More is similar than dissimilar with respect to the needs of children with disabilities post-disaster What differs is the continued need for special services and increased vulnerability due to preexisting socioeconomic factors

McAdams Ducy, E., & Stough, L. M. (2011). Exploring the support role of special education teachers after Hurricane Ike: Children with significant disabilities. Journal of Family Issues. Explored the role of teachers of children with significant disabilities during Hurricane Ike Despite being affected by the storm themselves, teachers provided essential support to students and their families throughout all phases of the disaster Teachers’ roles expanded to include instrumental and psychological supports Teachers provided support even while schools were closed and students were evacuated

Supporting Children with Disabilities During and Post- Disaster

Images retrieved from FEMA Photo Library 2007.

The National Response Framework states that individuals with disabilities or functional needs may have additional needs before, during and after a disaster in five functional CMIST areas: Communication Medical care Maintaining Independence Supervision Transportation

Defining Functional Needs Support Services Services that enable children and adults to maintain their pre-disaster level of independence post- disaster. These services include: Reasonable modifications to policies, practices, or procedures Durable medical equipment Consumable medical supplies Personal assistance services Other services or supplies as needed

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

Evacuations Be aware of stress unexpected separation places on parents and children Ensure that medicines, food, durable medical equipment, and health supplies evacuate with the student Make sure special education students practice procedures with rest of school

Assistive Device Needs Children may become separated from their devices or components (e.g. hearing aids, chargers) It may be impossible to evacuate with the assistive device (e.g. track lifts; power chairs) Their assistive device may be damaged or destroyed by the event There may be new (long-term) assistive device needs resulting from new injuries related to the event There may be new (short-term) assistive device needs due to a loss of other supports

Sheltering in place Be aware of stress unexpected separation places on parents and children Discuss sheltering-in-place plans with special education teachers Make sure special education students practice procedures with rest of school Ensure access to medicines and foods for 48 hours Have contact information for parents of students with disabilities at hand

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Shelters at the School 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

Access and Functional Needs vs. Acute Medical Needs Most children with disabilities do not have acute medical care needs, and maintain their health, safety and independence in their home and community on a daily basis. Planning to meet the access and functional needs of children with disabilities in general population settings can significantly reduce the use of very limited acute care resources and optimize return to their pre-disaster level of independence.

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 in shelter situations and other situations post-disaster. If electricity is available, give priority to those who use ventilators, suction devices, refrigeration for meds, etc. Most students with disabilities will not need a medical special needs shelter.

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

Effective Communication Provide explanations to children of what is occurring to the extent of their understanding 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

Facilitate Connections 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 Provide referrals and information to families

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 during disaster 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” for what your job will be during disasters likely to occur in your area.

Project REDD: Research and Education on Disability and Disaster redd.tamu.edu

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Photo by Kendall Kessel; April 2006

Laura M. Stough, Ph.D Center on Disability and Development Texas A&M University