Developmental Disability Etiquette

1. Developmental Disability Etiquette Patti Higgins, RN CCBDD (216) 736-2686 higgins.patricia@cuyahogabdd.org

2. DISABILITY ETIQUETTE Presentation Objectives: Identify the different modes of communication that individuals with DD utilize Discuss general communication strategies when working with individuals with DD Identify actions to take when individuals with DD have behavioral issues.

3. Communicating with Individuals with Developmental Disabilities MYTH # 1 People with DD cannot understand speech, let alone medical information

4. Premise #1 • Many people with DD can effectively communicate their needs • People with DD have a wide variety of communication skills and abilities

5. Premise #1 (continued)

6. Premise #1 • Individuals who are non-verbal can communicate with gestures and / or body language.

7. Premise #1 – Medical Info • Many people with DD are very involved with their healthcare. • Healthcare providers may have to adapt their physical environment and interaction techniques.

8. MYTH # 2 People with DD cannot make decisions

9. Premise # 2 People with developmental disabilities participate in decision making in a variety of ways.

10. PREMISE #2 (cont’d) • Many individuals with DD are their own guardians • Many individuals with DD are capable of informed consent for medical procedures / treatment.

11. MYTH #3 People with DD are sick. People with DD are dependent on others to meet many / all of their needs.

12. Many people with DD are not sick, incompetent, dependent, unintelligent or contagious. They are like the typical population, i.e. healthy, chronic medical conditions, mental health diagnoses and acute care issues People with DD have master’s degrees, work full-time, drive, own businesses, participate on committees, are married and have children. They are individuals and you use the same assessment skills as with typical population. Premise #3

13. Premise #3 – (cont’d) Triage Communication issues Baseline health Mirrors other individuals that may be in shelters, with mental health issues, alzheimers, elderly, typical population. Cooperative, communcative and compliant

14. MYTH #4 People with disabilities can access health care easily.

15. Premise #4 • Healthcare providers may have to adapt their physical environment and interaction techniques.

16. Premise #4 • Talk to the person, rather than through their caregiver or sign language interpreter. • If the caregiver needs to be involved in their healthcare conversation, ask the individual’s permission. • Listen patiently. Don’t complete sentences for the person unless he/she looks to you for help.

17. Premise #4 • Allow extra time for the visit and give specific directions. • Don’t pretend you understand a person with a speech disability just to be polite. • Be prepared for various devices or techniques used to enhance or augment speech.

18. General Communication Strategies N O U S S R (adapted from Seigel-Causey and Guess, 1989)

19. Nurture • Develop a trusting and supportive environment • Show real interest in communicating • Act and speak naturally

20. Opportunity • Communicate about what is happening now • Provide choices

21. U • “You” always play a key role in assuring effective communication • Talk to the person • Ask permission to talk with whoever is assisting them • Listen • Clarify • Restate

22. Sensitivity • Recognize an individual’s readiness to communicate • Respond at the person’s level • Recognize the communication modes of the individual • Respond appropriately to all communicative attempts

23. Sender • Get the person’s attention • Present info using person’s receptive mode • Repeat the message once, then restate • Rephrase using different words or modes • Recognize all attempts to respond

24. Sender • Treat Adults as Adults • Do not shout at the person with DD

25. Receiver • Pay attention and be aware • Ask for clarification when needed • Be honest • Encourage individual to use many modes

26. Cognitive Disability • Use very clear, specific language • Be patient. Allow the person time to tell or show you what he or she wants. • Condense lengthy directions into steps • Use short, concise instructions (Commission for People with Disabilities, November 2007)

27. Cognitive Disability • Present verbal information at a relatively slow pace, with appropriate pauses for processing time and with repetition if necessary, e.g. “In five minutes, we’ll be going to lunch.”

28. Cognitive Disabilities • Reinforce information with pictures or other visual images • Use modeling, rehearsing and role playing • Use concrete rather than abstract language • Limit the use of sarcasm or subtle humor

29. Cognitive Disabilities • If you are not sure what to say or do, just ask the person what he/she needs.

30. Dealing with Behavioral Issues • Dual Diagnosis: Individuals who have both a mental illness and a developmental or intellectual disability. Increase incidence of mental health issues with in people with DD – may be due to brain pathology.

31. Behavioral Issues • “Unlike the general population, individuals with a dual diagnosis may be more likely to exhibit sign and symptoms of their disorders in the form of behavioral outbursts including verbal or physical aggression, self-injury, property destruction, impulsive behaviors and/or elopement .” (Family Crisis Handbook, Donna Icovino & Lucille Esralew, Ph.D. July, 2009)

32. Behavioral Issues • Not uncommon for people with Pervasive Developmental Disorder (PDD) or Autism to display aggressive behavior. • May be a response to frustration, pain and limited communication skills.

33. Behavioral Issues • For individuals who are non-verbal, behaviors may be their way of expressing frustration and/ or pain.

34. How to Cope with Behaviors During a Disaster • Stay calm • Use verbal and non-verbal techniques including relaxed body position • Limiting space by directing the person to another room or area away from others • Soothing tone of voice • Avoid giving commands

35. How to Cope with Behaviors During a Disaster • Identify feelings (if able) • Ask Caregiver for assistance with behavior (may be aware of behavior plan to de-escalate aggressive behaviors) • Redirect to a different activity, preferably something soothing

36. Self-Injurious Behavior For some individuals, i.e, people with autism and those who are non-verbal, aggression may be expressed by self-injurious behavior. Head banging, hitting themselves, biting themselves. Interventions are the same as previously discussed.

37. A FINAL WORD People with DD are individuals with families, jobs, hobbies, likes and dislikes, problems and joys. While the disability is an integral part of who they are, it alone does not define them. Don’t make them into disability heroes or victims. Treat them as individuals.

38. RESOURCES • www.disabilityisnatural.com • Commission for People with Disabilities (November, 2007) • The Ten Commandments of Communicating with People with Disabilities www.ucp.org • www.peoplefirstohio.org • Ohio Developmental Disabilities Council • Self Advocates Being Empowered