Guidelines Mental Disability

 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.
Emergency Preparedness

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.

 
Emergency response

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
Permit grief

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.).

Emergency Recovery

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.