Transcript ID/DD - Southwestern PA Health Care Quality Unit

Emergency Department: Caring for
Patients with ID/DD (Clinical)
Presented by: APS Healthcare
Southwestern PA Health Care Quality Unit
(HCQU)
April 2011 ak
Disclaimer
Information or education provided by the HCQU is not
intended to replace medical advice from the
consumer’s personal care physician, existing facility
policy or federal, state and local regulations/codes
within the agency jurisdiction. The information
provided is not all inclusive of the topic presented.
Certificates for training hours will only be awarded to those who
attend a training in its entirety. Attendees are responsible for
submitting paperwork to their respective agencies.
© 2009 APS Healthcare, Inc.
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Note of Clarification
While mental retardation (MR) is still recognized as a clinical
diagnosis, in an effort to support the work of self-advocates,
the APS SW PA HCQU will be using the terms intellectual
and/or developmental disability (ID/DD) to replace mental
retardation (MR) when feasible.
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Objectives
 Define the term intellectual and developmental
disability and diagnostic criteria needed for clinical
diagnosis.
 Recognize unique health considerations and
researched based evidence that impacts individuals
with ID/DD in the medical setting.
 Identify communicative ways of expression in
individuals with ID/DD and discuss tools that can be
used to improve communication efforts.
 Recall therapeutic techniques that can be utilized,
within the DEM, to provide comfort to individuals
with ID/DD and reduce frustration in providing care.
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Intellectual and Development Disabilities (ID/DD)
Quality Health Care
 Access
 Knowledge
 Advocacy
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Emergency Nurse Experience and Perception
Qualitative Research Study
 Emergency nurse experience and perceptions
– Urban and suburban hospitals
– Emergency nurse volunteers
*International Journal of Nursing in Intellectual and Developmental Disabilities
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Emergency Nurse Experience and Perception
Study Results
The ED nurses expressed:
 Lack of knowledge and experience in providing care
 Communication challenges including difficulties in
sending and receiving messages
 Lack of comfort and frustration in providing care
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KNOWLEDGE
ED Nurse Perception Study: A Closer Look
Knowledge Quotes
 “You know I honestly don’t remember. They probably
touched on it in like psychology and stuff like that.”
 “My experience is so limited; I don’t even know what I
don’t know!”
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ID/DD: Terminology
Intellectual and Developmental Disability (ID/DD)
vs
Mental Retardation (MR)
“Words Do Matter”
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ID/DD - Definition
 Intellectual / Developmental Disability (ID/DD)
• A disability characterized by significant limitations in both
the intellectual and adaptive behavior as expressed in
conceptual, social and practical adaptive skills.
• Originates before age of 18 (22 in PA).
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ID/DD: Diagnostic Criteria
 Intellectual
– IQ score of 70 or below in intelligence tests
 Adaptive
– Impairments in adaptive functioning as identified in
standardized tests
• Conceptual
• Social
• Practical
 Onset prior to the age of 18 (22 in Pennsylvania)
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ID/DD: Causes
 Prenatal
- Inherited disorders
-
Chromosome abnormalities
Maternal malnutrition
Infections
Toxins
Drugs
 Perinatal
-
Hypoxia
Extreme prematurity
 Postnatal
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Brain Infections
Malnutrition
Severe emotional abuse or neglect
Toxins
Brain tumors and their treatment
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ID/DD: Prevalence
 Approximately 7.2 million people in the US have an
intellectual disablity
– Conservative Number
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Myths About People with ID/DD

The “Eternal Child”

Can not learn

Need to be “protected”

Want to be fixed

Can not have a mental illness

Do not require relationships
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ID/DD: Learning from the Past
 Institutionalization
– Overcrowded
– No privacy
– No personal belongings
– Restraints
 Some individuals seen in the DEM today lived this life
for many years
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ID/DD: Reshaping the Future
Deinstitutionalization Efforts – 1980’s
– Community Residential Programs
– Education and Awareness
• Positive Approaches
• People First Language
• “Everyday Lives” – Self Determination
– Adaptive technology
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ID/DD: Medical Issues
 Seizure disorders
 Congenital heart disorders
 Musculoskeletal conditions
 Endocrine disorders
 Gastro-intestinal disorders
 Premature aging
 Modified pain syndromes
 Sensory issues
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ID/DD: Mental Health Issues / Dual Diagnosis
 75% of individuals with ID/DD have a dual psychiatric
diagnosis.
 Diagnoses may include
– Mood disorder
– Anxiety disorder
– Impulse control disorder
– Psychotic disorder
– Personality disorder
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ID/DD: Trauma History and Risk
 “Victims who have some level of intellectual Impairment
are at the highest risk of abuse.” (Sobsey & Doe, 1991)
 “More than 90% of people with ID/DD will experience
sexual abuse at some point in their lives.” (Valenti-Hein
& Schwartz, 1995)
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COMMUNICATION
Emergency Nurse Perception Study – A Closer Look
Communication Challenges
ED Nursing Quotes:
“I had to determine if she was truly in pain which was very
challenging because she was moaning. She is very verbal but
her answers aren’t always appropriate. So determining
whether or not she was really in pain was really difficult and I
don’t know if I was good at it.”
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Ways of Expression: Forms of Communication
 Forms of Communication
– Verbal
– Nonverbal
– Behavioral
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Ways of Expression: Verbal
 Verbal Communication
– Direct
– Indirect
• Echolalia
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Ways of Expression: Non-Verbal
 Non-verbal
– Facial Grimacing
– Crossing of arms over chest
– Rolling of eyes
– Curling into a fetal position
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Ways of Expression: Behavioral
 Behavioral
– Head banging
– Intense rocking/ preoccupation
– Untypical masturbation
– Fecal smearing
 Physical aliment accounts for 70% of new behaviors.
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Challenging Behaviors
 Anyone can display challenging behaviors
 All behavior has meaning
 People have good reason to do what they do
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Nursing Considerations
 Speak directly to the person
 Explain in simple terms, avoid complex
 18 second rule
– Listen
– Give 18 seconds for person to answer
 Communication partners
 Adaptive Communication
– Sign Language/Communication technology
 Always use People First Language
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PROVIDING COMFORT
Emergency Nurse Perception Study – A Closer Look
Providing Comfort – Reducing Frustration
“Well the fact that they don’t always understand exactly
what you’re doing to them, and then it takes a lot more
time just so you are not rushing into anything with them
to scare them or to get them upset.”
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Reducing Frustration: Information Gathering
 “Get to Know Me”
 Consent
 Significant other
 Security Item
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Reducing Frustration: Waiting Periods
 Sensory box
 Activity apron
 Escape room
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Reducing Frustration: Physical Examination
 Personal space considerations
 Distal to proximal exam
 Step by step instructions
• Concrete / avoid abstract
 Role play
 Remember trauma history
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Reducing Frustration: Treatments / Intervention
 Story Boards
 Medical Stories
 Significant other
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Reducing Frustration: Pain Assessment
 Verbal
– Numeric Scale (1- 10)
 Nonverbal
– Pain Story Boards
– Wong - Baker Facial Scale
 Behavioral Manifestations
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Reducing Frustrations: Avoidance of Restraints
 Negative consequences of restraint use:
– Can cause not only physical harm, but also psychological
harm
– Can re-traumatize individuals by reminding them of past
experiences, particularly when restraints were used
inappropriately
– Can induce fear and powerlessness because a person’s
choice and control are lost
– Do not teach the person how to maintain control of self
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Continuity of Care: Hospital Admission
 Communication Tools – Inter-departmental
– “Get to Know Me”
 Significant other
 Security item
 Roommate selection
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Continuity of Care: Discharge to Community
 Communication to Community
– Family Living
– Provider agencies (Group homes, ICF, Life sharing etc.)
– Institutions
 Specific regulations
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Thank You
I expect to pass through life but once.
If therefore, there be any
kindness I can show, or any good thing
I can do to any fellow being,
let me do it now,
and not defer or neglect it,
as I shall not pass this way again.
William Penn
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References

A Qualitative Study of Emergency Nurse’s Perceptions and
Experience in caring for individuals with Intellectual and
Developmental Disabilities, Fisher, K. Frazer, C. Hasson, Orkin , F.
International Journal of Nursing in Intellectual and Developmental
Disabilities. (2004). Retrieved April 8, 2011 from
www.journal.ddna.org

Guidelines for Managing the Client with Intellectual Disability in the
Emergency Room, Bradley, E. University of Toronto. Intellectual
Disabilities Psychiatry Curriculum Planning Committee. (2002).
Retrieved March 8, 2011 from
www.camh.net/path_home/pdfs/guidelines_manageclient_emerg20
03.pdf

Autism information for Paramedics and Emergency Room Staff,
Autism Society. Autism Source.. Retrieved June 26, 2010 from
www.autism.org

“Words Do Matter” Senate Bill 1443 Changes Name of Mental
Health and Mental Retardation Act of 1966, Indars, M.
Pennsylvania State Senator – Andy Dinniman, Representing the
19th district. Retrieved March 30, 2011 from
http://www.senatordinniman.com/Releases/2010/July15
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References

Dignity in health care people with learning disabilities, Royal
College of Nursing, Dignity. (2009). Retrieved April 20, 2011 from
www.rcn.org.uk

Care of Patients with Disabilities: An important and often ignored
Aspect of Family Medicine Teaching, Huang, W. Family Medicine.
(2006) Retrieved on April 7, 2011 from http://wichita.kumc.edu

The Unfinished Promise of Willowbrook: Twenty Five Years of
Unnecessary Despair, Mental Health Association of New York
(2002). Retrieved April 20, 2010 from
http://www.mhanys.org/policy/pp_willowbrook.htm

Sobsey, D. & Doe, T. (1991). Patterns of sexual abuse and assault.
Sexuality and Disability, 9 (3), 243-259. Retrieved from Trauma
Beyond Words

Valenti-Hein, D. & Schwartz, L. (1995). The sexual abuse interview
for those with developmental disabilities. James Stanfield
Company. Santa Barbara: California. Retrieved from Abuse.

Non Wheelchair User Etiquette, Apparelyzed, Spinal Injury Support
Program. Retrieved March 30, 2011 from apparelyzed.com.
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or
for more information on this or any other physical or
behavioral health topic, please visit our website at
www.hcqu.apshealthcare.com
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© 2009 APS Healthcare, Inc.
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