We use in this text the term "mental disability" to cover three sub-groups of disabilities. By the term people with mental disability we understand people with intellectual disabilities, people with dementia and people with autism spectrum disorder. If we give recommendations on a specific group, we use the specific diagnostic term. The following recommendations are based on multiple sources. One of the sources is the literature analysis of the topic, mainly using the guidelines based on research or particular experiences. Another source were workshops with representatives of caregivers for the people with mental disability, emergency rescue services representatives, therapists and other specialists working with the target group. Another source was a qualitative study carried out within the frame of the EUNAD projects. The University of Innsbruck and the Charles University in Prague were the implementing institutions with comprehensive support of the University of Würzburg - Department special education.
Most important aspects in the prevention phase are raising awareness and trainings:
- Raise awareness within the community for people with mental disabilities. Community connectedness is very important, using local sources which can support the correct reaction of people with intellectual disabilities to emergency situation and efficient evacuation.
- Trust in the community - bridge for communication with clients. Clients usually trust their local organization/caregivers, they are in touch with.
- Train all helpers in psychosocial support and psychological first aid for people with mental disabilities including first responders and first aid personal. Ensure that coercive methods are only used as the very last choice.
- Ensure that all personnel is aware of national legal regulations regarding the use of coercive methods.
- Design emergency plans and set up intervention teams in facilities for people with mental disabilities. Institutions/service providers which provide services to people with specific needs with permanent or temporary accommodation and care should have emergency help plans at least for the first 72 hours.
- Promote local interagency cooperation/ networking between different organizations of care and emergency organizations /cooperate with other organizations for people with mental disabilities.
- Implement local teams specialized on people with mental disabilities for intervention in disasters.
- Cooperate with emergency workers including local authorities and organizations to improve emergency preparedness of people with intellectual disabilities (planning, evaluating of preparedness and knowledge, raising awareness of needs and own capacities of people with disabilities).
- Develop communication network for unexpected events for people with mental disabilities. Prepare a list of contacts of relatives, close person or list of cooperating organisations, which can give support in case of emergency.
- It is recommended to create an identification bracelet (name + contact of service provider) for the person.
- Create a list of specific reactions and needs of each person. This list should include also list of medication and dosing (client card in emergency form, i.e. laminated A4 form, portable).
- Prepare medication to cover 14 days.
- Knowledge of evacuation plan for staff and clients is essential and should be trained and tested at least once a year. Organize exercises for caregivers and for people with mental disabilities. Primary caregiver - should check whether people with intellectual disabilities are prepared for disaster/emergency situation.
Actively involve persons with mental disabilities in exercise and drills but provide an environment that does not induce too much hyperarousal. If some people with mental disabilities are expected to become too stressed, exclude them from the drill but train with the rest of the group.
For the people with dementia the training may not have positive effect. Training can be more efficient for helpers and caregivers, this in turn may lead to a better and calmer evacuation procedure in case of emergencies.
- Transport plans primarily for patients with mobility issues should be well prepared ahead. § Plan of substitute accommodation/shelter - choosing adequate (similar) institution.
- Cooperate with media so that information it is suitable also for people with mental disabilities (simple language).
Advantages of engaging community organizations into emergency planning:
- Organizations providing daily service for people with mental disabilities have the best awareness about their clients' reactions needs and vulnerabilities during emergency situations.
- Local organizations may or may not be connected to the state organizations providing service primarily to certain groups of people. These organizations know how to contact i.e. homeless people, low-income people and seniors.
- Community organizations are experts in active searching, giving recommendation, maintaining contact with groups of volunteers, being able to provide special services. Language and cultural sensitivity is important.
- Engaging these organisations in emergency planning, preparation and training is possible and recommended.
- Mapping and support in availability / accessibility - i.e. for people living alone and not in institutions can be only done in close cooperation with local communities.
Training and Preparation
Cooperation of emergency workers with local organizations:
- Provide seminars, workshops for all staff and volunteers, exchange mutual knowledge and experience (caregiving organisations and emergency personnel) provide knowledge about the target groups and train specific ways how to start communication and how to deal with people during evacuation.
- Do regular exercises (if possible clients should know "their" i.e. firefighters, should not be afraid of them but also firefighters shall get to know their potential "clients") - training of using protective equipment, evacuation etc.
- Use "Open doors days" - connecting organizations, public and emergency workers to get to know each other but be aware that cooperation is only effective if it is long term.
- Direct experience reduces fear and prejudice in all involved parties.
Suggestions for preparation of the target group:
- In some cases practical training and preparation in the organizations is not possible due to health state of clients. Develop other forms of exercise. But be aware that in most cases it is possible and effective to actively include especially people with intellectual disabilities in exercises.
- Provide a safe and understandable framework in exercises and training with people with intellectual disability.
- Importance of individual plan - includes a basic kit/package of preparedness for emergency.
- Persons with limited mobility should be supported in arranging emergency transport plans ahead.
- Content of kit/package: Identification bracelet (name, date of birth + contact of service provider or assistant)
- List of specific individual needs of each person (name of a client, contact to close person or assistant, actual list of medication and dosage (client card in emergency form, i.e. laminated A4 form, portable)
- Medication in dosage for 14 days.
In the response phase psychological first aid has to be adapted to the skills and needs of persons with mental disabilities.
First contact to persons with mental disabilities:
- Respect dignity and independence of people with intellectual disabilities during emergency: For example: Don't treat persons with intellectual disabilities like children, talk to in a manner that is appropriate to their age!
- Take into account that despite all effort some people with mental disabilities will not be able to understand.
- According to the degree of impairment communicate with assistance person or staff to get needed information.
- Ensure orientation according to the degree of impairment.
- Pay attention to nonverbal signals and try to respond to these adequately.
- Explain each action you perform verbally even though there might be a lack of speech comprehension.
- Use a simple, slow, but no infantilizing language.
- Be careful in the case of physical proximity (caution: Individuals with intellectual disabilities might fear medical interventions)
- Some people with intellectual disability or autistic spectrum disorder use assistive technologies to communicate.
- Ensure basic needs and promote stress reduction:
Assess needs depending on the degree of impairment (e.g. restricted communication possibilities or obsessions with certain concerns (toy/mother))
Permit stereotyping or automutilitative behavior (reduction of tension and calming down)
Minimize additional sources of distress - for example switch off emergency vehicle light.
- Enhance feeling of protection, safety and stabilization:
Involve trusted individuals, familiar environment, belongings, assistive technologies, activities; establish contact to persons of trust (parents).
Implement security by providing distance or proximity (individual differences).
Promote the feeling of self-efficiency and independence as much as possible.
Be aware that concrete and actual experience is more important than imagination.
Be aware of group thinking and group behaviour (calming group behaviour).
Keep attention on dynamics and emotion transmission in a group of clients. On the other hand evacuation of clients in group may give them feeling of safety.
- Involvement of caregivers:
In most cases caregivers are affected by the disaster themselves and restricted in their actions; they cannot care for more individuals at the same time, therefore: Cooperate with caregivers, help them to help or include other capable persons of trust.
Support and advocate for caregivers.
Instruct trusted people how they can help.
- Information Dissemination:
Focus on few key points and concrete information (support via gestures)
Use a clear and guided communication
Seek information from family members
Involve local caregivers and institutions
Ensure counselling for caregivers and facilities for persons with intellectual impairment
- Responding to self-harm and harm towards others:
Pay attention to the safety and protection needs of the helpers
Act in an effective and in a most harmless manner
In severe cases contact the medical personnel to support with medical treatment
Communication specificities with seniors with dementia:
- Turn to clients using their names or titles (not using "grandma", "grandpa").
- Be active in checking for possible communication barriers and adjust your communication.
- Calm down possible source of noise - TV etc.
- Don't use loud voice, unless you are sure the client is hard of hearing.
- Respect clients' slowing down pace and protect them from time stress.
- Repeat information several times and/or use writing on paper, when the information is complicated.
Communication specificities with intellectually disabled people:
- It always depends on the level and strength of the disorder. Staff and assistance people know clients' specifics the best.
- Be aware of different rules of communication! (take whole situation into account). Verbal communication is different - they may have trouble using correctly "yes/no".
- Don't underestimate them in communication - no child talk, communicate with them like with adults. Avoid paternalism.
- Expect high suggestibility - people are easily influenced by others.
- Tendency to be dependent on other people.
- Bad orientation in unknown environment.
- They may react in a "strange way", in their own way (i.e. can react very loudly to very small change).
- They may ask strange questions and repeat them many times over and over. § They may talk to themselves.
- At some moments they laugh when other people don't laugh.
- They use facial expressions less or in their own way.
- They may get into strange body position.
- Very often they don't respect communication (personal) zone.
- Calm them down, explain them what is going on.
- Use simple language. Avoid terminology, using phrases, irony etc.
- Use nonverbal communication:
Illustrative gestures - point at body, at concrete objects etc.
Use pictures/picture cards
- Use assistive technologies (talkers and other technical aids) if available
- Verify their understanding
- Allow more time for answering
- If they don't understand show them what you meant or use different words or sentences.
- Use concrete expression - exact timing: instead of using "we go for a walk in two hours" it is better to say "we go for a walk after the lunch".
- Speak always just about one topic / one object / one thing.
- Be clear at letting know the person that we're finishing conversation or we're leaving.
- During transport use physical contact (holding hands) till you forward a client to a known person + it is best to involve persons known by clients!
Communication specificities of people with autism spectrum disorder:
- They may not communicate verbally, not always react or react in one word. Be aware of nonverbal signs.
- They may have trouble with correct use of yes/no.
- They may not ask usual questions - it doesn't correspondent to age of a person or it is unusual (asking over and over about measures as height, weight, technical questions, time of city transport etc.) or asking about the same thing over and over.
- Conversation is often not suitable to situation (they don't respect social context; make no difference in conversation partners).
- Very often they talk to themselves.
- Inadequate laughter with no meaning.
- Stereotypes - repeating same words, sentences, songs, verses etc.
- Verbalism - "verbiage ", accumulation of words, sentences with incorrect using.
- Echolalia - repeating words, sentences, phrases. It may be immediate or postponed.
- Hyperacusis - hypersensitivity to audio impulses, reaction is inadequate (aggression - towards all around, or themselves).
- Overgeneralization of words - i.e. blood is everything what is red.
- Some may not be able to generalize - "a car" - they can mean only one specific car, toy from their childhood.
- Their talk may have mechanical and formal sound.
- They may speak about themselves in 3rd person (he/she/it), very small usage of 1st person.
- Many have difficulty in using and understanding irony, abstract expressions.
- Eye contact - problem to establish and to have eye contact, looking "through", not stable in looking at you, looking at object for very long time etc.
- Facial expressions - low or no ability to express and to understand emotional expressions (sadness, happiness.).
- Use of gestures - low or no ability to express or to understand to gesticulation (waving of hand...). § Inadequate body position or movements (shrugged shoulders, nodding, and spinning).
- Communication (personal) zone - not respecting it, either they have too big zone or too narrow.
- Prosodic factors (melodies, rhythm of talk etc.) - voice is too high or too low, monotony, staccato (short talk), legato (prolonged talk).
- Other communication forms - using hand of other person as a tool to get something (putting hand on the door means "open the door").
- They may have very high tolerance of pain (they don't mind their own injury) or strange ways of expressing pain.
- They may have very low tolerance in waiting.
- They may have rage attacks (including aggression towards surroundings or towards themselves) while waiting for something or in situation that brings changes in their rituals or reacting to specific impulse (word, context...).
Communication/interaction strategies of people with autism spectrum disorder:
- Avoid sudden movements. § Move slowly, performing exams distal to proximal.
- Explain what you plan to do in advance and as you do it. Explain where you are going and what they may see and who might be there. This may avert unnecessary anxiety and/or outbursts of aggression from the patient. Individuals who appear not to understand may have better receptive language, which may not always be entirely evident.
- Expect the unexpected. Clients with autism may ingest something or get into something without their caregivers realizing it. Look for less obvious causality and inspect carefully for other injuries.
- If possible ask a caregiver what the functional level of the individual with autism is, then treat accordingly. Stickers, stuffed animals and such which are used to calm young children may be helpful even in older patients.
- Attempt to perform exams in a quiet spot if at all possible, depending on the severity of injury and safety of the scene. Demonstrating what the exam will consist of on another person first may help the person with autism have a visual knowledge of what your intentions are.
Evacuation of people with intellectual disabilities:
- People with intellectual disabilities may need more time to mobilize support, to arrange transport and to find suitable target place to evacuate.
- People with limited mobility should be supported to arrange emergency transport plan in advance.
- Research shows that most emergency situations happening in nursing homes or hospitals were well managed thanks to flexible staff and other people (friends, families). Staff providing primary medical care may be interrupted or busy by evacuation process and it may cause troubles in giving necessary care.
- Shelters in big building as schools may cause disorientation to people with intellectual impairment and dementia. It can cause chaos by noise, higher and quicker activity. Unknown environment, gathering of many people may be a problem for autistic people.
- It is necessary to support persons with intellectual disabilities to adjust to a new environment - in a first step it is important to minimize confusion and then re-establish structure as soon as possible.
- In case of evacuation of institution for people with mental disabilities it is recommended to cooperate with a second similar institution where clients can be transported and looked after in similar way.
- In substitute accommodation/shelter services must be accessible - including communication technologies (interpreter, assistive technologies, printer, assistance for people with mental disabilities etc.).
In the recovery phase normality and additional care have to be established.
- Support in restructuring of daily activities; help to regain normality/ return to usual service functioning and continuity of care.
- Refer to therapy if needed/ Ensure psychological care if needed.
- Focus on stabilization techniques § Criteria for additional care:
- Prolonged or recurring severe signs of distress (in spite of medical treatment), sleeplessness, restlessness, no ingestion, dissociation, lacking involvement in group behaviour, lack of understanding or acceptance
- Give mental health care if needed and appreciate work of caregivers.
- Provide counselling for facilities with special needs to ensure the long term recovery. Coach caregivers in how to support clients.
- People with intellectual disability can and shall be involved in mourning rituals.
- Risk target group usually obtains less financial and material help after disaster. That is why they need more support and guidance.
- Troubles start with managing official procedures including demand to fill in forms on PC and to apply to it on-line.
- People with intellectual disabilities often have bad orientation in a new environment. A person with intellectual disability often has problems in directional orientation, numbers. If there is a need to send this person somewhere to an office it is always better to go with him / her as a guide. Although this person finds the right office still he/she is afraid to enter and so often leaves with no result or keeps waiting out and lets other people to go in (overtake).
- Lower capacity to understand written text. We should read the text together, explain it, and ensure they understand. We should not just give the paper to the client to fill in.
- People with mental disability can be afraid of losing social or other benefits.
- Seniors can be ashamed to accept help (can feel it being stigmatizing) or can feel that other people need help more.