Quality Healthcare For People With Intellectual & Developmental Disabilities

1. Quality Healthcare For People With Intellectual & Developmental Disabilities Presented by: APS Healthcare Southwestern PA Health Care Quality Unit (HCQU)

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.

3. Objectives • Recognize health concerns for individuals with intellectual and developmental disabilities • Utilize the nursing process to provide competent and compassionate care to individuals with intellectual and developmental disabilities in all healthcare settings

4. Defining Intellectual Disability • A disability characterized by significant limitations in both intellectual functioning and adaptive behavior as expressed in conceptual, social, and practical adaptive skills • Originates before age 18 Source: American Association on Intellectual and Developmental Disabilities

5. Diagnostic Criteria • Sub-average intellectual functioning (IQ <70) • Impairment in at least two areas of adaptive functioning • Skills that people possess so they can function in their everyday lives • Onset before age 18, and before 22nd birthday in the state of PA

6. Prevalence of ID • Approximately 7.2 million Americans living with ID • Conservative figure

7. Causes of Intellectual Disabilities • Categorized in three ways • Pre-natal • Chromosomal disorders, Inborn errors of metabolism • Peri-natal • Head trauma at birth, abnormal or difficult labor • Post-natal • Lead poisoning, poverty (lack of medical care) • For many people, the cause is unknown

8. …are considered the “eternal child” …can not learn …need to be “protected” …want to be “fixed” …don’t know any better …are dangerous …do not have mental illness …do not require relationships, intimacy, or love …aren’t capable of living meaningful lives Myths About People with ID People with ID…

9. People With Intellectual Disabilities Speak! “When we are having trouble doing something, don’t take over and do it for us. Give us some assistance, but only a little bit, when we need help to get us started in the right direction…then let us finish what we started on our own.” Quote from “Opportunities for Excellence, Supporting the Frontline Workforce”, President’s Committee on Mental Retardation.

10. Supporting People with ID • Institutionalization • Overcrowded, no privacy, no personal belongings, loud, restraints used to control behavior • Major change in 1980’s • Self Advocates, Positive Approaches, Self Determination • De-Institutionalization • Awareness of Dual Diagnosis

11. SupportingPeoplewithID • 2000 – Present Focus is on choice, control, inclusion, contribution, success, and freedom • Positive Approaches/People First Language • MH Support • Adaptive Technologies • Social Sexuality • Quality

12. Issues Faced By Healthcare Providers/Caring for Individuals with ID

13. Communication • Verbal • Facilitated communication • Communication partner • Non-verbal • Social stories and story boards • Sign language • Electronic communication devices

14. Learning • Is the person ready to learn? • Consider communication needs • Concerns related to mental health diagnoses

15. Helping Individuals Learn • Concrete and specific instruction • Patience • Delayed processing • Repetition

16. Medical Concerns and Nursing Considerations • Vision and or hearing impairments • Thyroid conditions • Hypothyroidism most common • Gastrointestinal conditions • GERD, dysphagia

17. Medical Concerns and Nursing Considerations • Seizure disorder • Often difficult to control; VNS device • Musculoskeletal conditions • Atlantoaxial instability in Trisomy 21 • Congenital heart anomalies • Tetralogy of Fallot, transposition of the great vessels, and valve defects • Nursing Intervention • Manage all medical conditions as per the general population

18. Pain and Nursing Considerations • Individuals with ID can and do feel pain • Watch for non-verbal clues of pain • Nursing Intervention • Refrain from withholding pain medication; employ comfort measures

19. Sensory Issues and Nursing Considerations • Over-stimulation from the environment • Sounds, lighting, patterns, textures • Self-stimulating behavior • Means of communication and comfort • Head banging or body rocking • Nursing Intervention • Minimize the stimulation from the environment

20. Trauma History and Nursing Considerations • Types of trauma • Physical, sexual, and/or emotional abuse • Losses • Feelings that result from trauma • Powerlessness and loneliness • Feeling disenfranchised from humanity “Our bodies weep the tears our eyes refuse to shed.”Dan Millman • Nursing Interventions • Kindness, respectfulness, safe atmosphere

21. Managing Challenging Behaviors • ANYBODY can display challenging behaviors • 3 things to help understand challenging behavior: • All behavior has meaning • People have good reasons for what they do • People do the best they can with what they know at that point in time • Nursing Intervention • Ask the right questions to find out about the behavior; Avoid labeling a behavior

22. Mental Health Concerns and Nursing Considerations • Any mental health diagnosis found in DSM-IV • Anxiety disorders, impulse control disorders, mood disorders, personality disorders, psychotic disorders • Nursing Intervention • Assure that mental health issues are being treated; recognize challenges as possibly stemming from mental health concerns

23. Psychotropic Medication • Medication used to treat emotional and mental illness • Potential for serious side effects • Extrapyramidal Side Effects • Neuroleptic Malignant Syndrome • Central Serotonin Syndrome • Nursing Intervention • Watch for side effects and intervene immediately

24. Aging and Nursing Considerations • For the most part, people with ID age in the same way that the general population ages • Special considerations • Individuals with Trisomy 21 • Dual aging • Long term medication use may increase the risk of disease • Nursing Intervention • Make a good assessment of the home environment and refer to discharge planning as appropriate

25. Discharge Planning • Refer to team resources for discharge planning at the time of admission • Verify living arrangements • Determine to whom instructions should be given

26. Positive and Compassionate Nursing Care for People with ID

27. Assessment • Be respectful • Ask for permission to do a physical assessment • Provide privacy • Use a modified pain scale if needed

28. Planning • Include the person with ID in his or her plan of care. If the individual does not have the capability to understand or participate fully, include family or staff members • Plan teaching techniques that are useful for the individual, based on his or her communication needs

29. Intervention • Respect the rights of the individual • ALWAYS explain who you are and what you are doing • Use Positive Approaches at all times • Allow the individual to see and touch items that don’t have to be sterile, such as stethoscope, thermometer, BP cuff • If possible, arrange for the individual to visit the area where a special test will be done

30. Evaluation • Use feedback from the individual to evaluate the effectiveness of nursing care • Make changes based on individual needs and preferences

31. A Growing Specialty in Nursing • Holistic approach to care • Blends psychiatric and medical surgical nursing • Utilizes broad range of skills • Assessment • Creativity • “Out of the box” thinking • Certification available • DDNA www.ddna.org

32. Something to Remember “You may be only one person in the world, but you may also be the world to one person.”

33. THANK YOU FOR BEING A CARING, COMPASSIONATE NURSE 7/13/2006; Revised 10/07-alt

34. References • The Arc. (2007). Introduction to Mental Retardation October 2004, Retrieved on October 19, 2007 from http://www.thearc.org/NetCommunity/Document.Doc?&id=143 • American Association on Intellectual and Developmental Disabilities (2007). 2007-2008 Legislative Goals for the 110th July 5, 2007Congress retrieved October 18, 2007 from http://www.aamr.org/Policies/pdf/Legislative%20Goals.pdf

35. References • APS Healthcare SWPA HCQU PowerPoint Trainings: • Pain Management • Trauma: Beyond Words • Safe Use of Psychotropic Medications Accessed and reviewed October 29, 2007

36. References: “The Health Status and Needs of the Individual with Mental Retardation”, Special Olympics, Retrieved 5/2/06 www.specialolympics.org OMR Timeline: Looking At Our System and Seeing It Through the Eyes of Another. Doug Pickens. Polk State Center. 2005. “The Prevention News, The ARC of California, retrieved 6/5/06 www.prevention-news.com/general/causes.htm Thanks to Guy Legare, M.Ps. Management and Clinical Consultant OMR Statewide Training and Technical Assistance Initiative, Pennsylvania, 2005 for all his teachings and mentoring.

37. For more information on this or any other physical or behavioral health topic, please visit our website @ www.hcqu.apshealthcare.com

38. HCQU WEBSITE