1. Emergency Department: Caring for Patients with ID/DD (Clinical) Presented by: APS Healthcare Southwestern PA Health Care Quality Unit (HCQU)
April 2011 ak

2. 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.
Standard APS disclaimers 2

3. 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.

4. 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.
Objectives need to be measurable. These are wording examples. 4

5. Intellectual and Development Disabilities (ID/DD)
Quality Health Care
Access
Knowledge
Advocacy

6. 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

7. 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

8. KNOWLEDGE

9. 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!”

10. ID/DD: Terminology “Words Do Matter”
Intellectual and Developmental Disability (ID/DD) vs
Mental Retardation (MR)
“Words Do Matter”

11. 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).

12. 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)

13. ID/DD: Causes Prenatal Inherited disorders Perinatal Postnatal
Chromosome abnormalities
Maternal malnutrition
Infections
Toxins
Drugs
Perinatal
Hypoxia
Extreme prematurity
Postnatal
- Brain Infections
- Malnutrition
- Severe emotional abuse or neglect
- Toxins
- Brain tumors and their treatment

14. ID/DD: Prevalence
Approximately 7.2 million people in the US have an intellectual disablity
Conservative Number

15. 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

16. 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

17. 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

18. ID/DD: Medical Issues Seizure disorders Congenital heart disorders
Musculoskeletal conditions
Endocrine disorders
Gastro-intestinal disorders
Premature aging
Modified pain syndromes
Sensory issues

19. 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

20. 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)

21. COMMUNICATION

22. 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.”

23. Ways of Expression: Forms of Communication
Verbal
Nonverbal
Behavioral

24. Ways of Expression: Verbal
Verbal Communication
Direct
Indirect
Echolalia

25. Ways of Expression: Non-Verbal
Facial Grimacing
Crossing of arms over chest
Rolling of eyes
Curling into a fetal position

26. Ways of Expression: Behavioral
Head banging
Intense rocking/ preoccupation
Untypical masturbation
Fecal smearing
Physical aliment accounts for 70% of new behaviors.

27. Challenging Behaviors
Anyone can display challenging behaviors
All behavior has meaning
People have good reason to do what they do

28. 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

29. PROVIDING COMFORT

30. 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.”

31. Reducing Frustration: Information Gathering
“Get to Know Me”
Consent
Significant other
Security Item

32. Reducing Frustration: Waiting Periods
Sensory box
Activity apron
Escape room

33. Reducing Frustration: Physical Examination
Personal space considerations
Distal to proximal exam
Step by step instructions
Concrete / avoid abstract
Role play
Remember trauma history

34. Reducing Frustration: Treatments / Intervention
Story Boards
Medical Stories
Significant other

35. Reducing Frustration: Pain Assessment
Verbal
Numeric Scale (1- 10)
Nonverbal
Pain Story Boards
Wong - Baker Facial Scale
Behavioral Manifestations

36. 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

37. Continuity of Care: Hospital Admission
Communication Tools – Inter-departmental
“Get to Know Me”
Significant other
Security item
Roommate selection

38. Continuity of Care: Discharge to Community
Communication to Community
Family Living
Provider agencies (Group homes, ICF, Life sharing etc.)
Institutions
Specific regulations

39. I expect to pass through life but once. If therefore, there be any
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

40. 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
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
Autism information for Paramedics and Emergency Room Staff, Autism Society. Autism Source.. Retrieved June 26, 2010 from
“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

41. References
Dignity in health care people with learning disabilities, Royal College of Nursing, Dignity. (2009). Retrieved April 20, 2011 from
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
The Unfinished Promise of Willowbrook: Twenty Five Years of Unnecessary Despair, Mental Health Association of New York (2002). Retrieved April 20, 2010 from
Sobsey, D. & Doe, T. (1991). Patterns of sexual abuse and assault. Sexuality and Disability, 9 (3), 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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44. Evaluation Please take a few moments to complete the evaluation form found in the back of your packets. Thank You!

45. Test Review There will be a test review after all tests have been completed and turned in to the Instructor.