It’s Not Always the Way it Seems An Introduction to Individuals with Developmental Disabilities

1. It’s Not Always the Way it SeemsAn Introduction to Individuals with Developmental Disabilities Kathy Biddlestone, RN, BSN, CDDN biddlestone.kathleen@cuyahogabdd.org Cuyahoga County Board of Developmental Disabilities August 13, 2012

2. "Things are not always what they seem; the first appearance deceives many; the intelligence of a few perceives what has been carefully hidden.“ Phaedrus

3. Objectives Differentiate between the terms Intellectual Disability and Developmental Disability (I/DD) Identify 5 specialized care needs of individuals with I/DD Identify 5 challenges that meeting the disaster planning needs of individuals with I/DD.

4. Escape/Rescue involves: • Walking • Running • Driving • Seeing • Hearing • Quickly responding to directions

5. What is a Disability? • Expression of limitations in an individual’s function within a social context which represents a substantial disadvantage to the individual • Physical: CP; Para/Quadriplegia; CVA; Amputees • Cognitive: TBI; CVA; I/DD • Mental: Mental illness • Sensory: Visual/Hearing • Emotional; PTSD; separation/abandonment issues • Developmental: Down syndrome; Autism; CP • Or some combination of these.

6. Current Terminology • Intellectual/Developmental Disability Often abbreviated IDD or DD

7. Disability is not, “One Size Fits All” “Just Like Us” Individuals who happen to have a disability are part of our world’s

8. facs.pppst.com facs.pppst.com

9. What’s In a Name?The Evolution of the Terminology over 200 years • Idiocy • Feeblemindedness • Mental deficiency • Mental disability • Mental handicap • Mental Retardation • Developmental Disabilities • Intellectual Disabilities

10. Rosa’s Law • Oct. 5, 2010 President Obama signed into law, a bill which removed the term mental retardation and replaced it with intellectual disability • Ohio adopted the change July 7, 2009

11. Only the name has changed… • The term ID covers the same population of individuals previously diagnosed with Mental Retardation • Every individual who is or was eligible for a diagnosis of mental retardation is eligible for a diagnosis of intellectual/developmental disability

12. Why is this Important? • Essential role of the term Mental Retardation as it relates to public policy • IDEA (2004) Individuals with Disabilities Act • Social Security Disability • Insurance • Medicaid Home and Community Based Waivers • Citizenship and Legal Status • Early intervention and Education • Civil and Criminal Justice • Training and Employment • Income Support • Health Care • Housing and Zoning • FEMA

13. So, just who are we talking about? • 19.3 % of the 257.2 million people representing the general population of the US • 49,639,600 • Depending on who you ask!

14. Intellectual Disability • Intellectual disability is characterized by significant limitations both in intellectual functioning and in adaptive behavior which covers many everyday social and practical skills.

15. Intellectual Disability • Originates before age 18. • Adaptive behavior is expressed in conceptual, social and practical adaptive skills. • Limitations are considered within the typical environments of the person’s age peers and culture. • Assessments consider cultural and linguistic diversity as well as differences in communication, sensory, motor and behavioral factors. • Within an individual, limitations often coexist with strengths

16. IDD Class IQ Profound mental retardation Below 20 Severe mental retardation 20–34 Moderate mental retardation 35–49 Mild mental retardation 50–69 Borderline intellectual functioning 70–84

17. Developmental Disability • A severe, chronic disability • Manifested before the age of 22 • Likely to continue indefinitely;

18. WHICH results in substantial functional limitations in three or more of the following areas of major life activity: • Self-care • Receptive and expressive language • Learning • Mobility • Self-direction • Capacity of independent living • Economic self-sufficiency

19. Examples of Developmental Disabilities Epilepsy Autism and autism spectrum disorders Fetal Alcoholism Syndrome Lead Poisoning Intellectual disability Cerebral palsy Down syndrome Prader-Willi Syndrome Hearing /Vision Impairments Cystic Fibrosis

20. All people with an intellectual disability have a developmental disability however, not all people with a developmental disability have an intellectual disability.

21. Specialized Care Needs Need for medical treatments/medications that they may not be able to perform independently. which may lead to the need for a caregiver with specialized and often individual specific training

22. Swallowing/Feeding Concerns • Particularly in individuals with Cerebral Palsy and Down’s syndrome with dementia

23. Nosy Cup Bendable Fork Adaptive Eating Equipment phytopharmaonline.com • bestmedicalsuppliesonsale.com

24. Velcro utensil Scoop Plate Adaptive Eating Equipment maddak.com • expressmedsupplies.com

25. Tube Feedings • Providing nutrition, hydration and medication through a tube inserted into the stomach or small intestine www.oralcancer.org

26. Specialized Medical Needs Medications

27. Diabetes management often requires blood sugar testing, using a glucometer. It may also require management with oral medication and/or injected insulin. Glucometer use/Insulin Administration orleebinamira.blogspot.com isletsofhope.com

28. Nebulizer Inhalers Respiratory Issues Use of devices to provide inhaled medications sportswallpaper.cc.cc www.natural-holistic-health.com

29. Tracheostomy • tracheostomy is a surgical procedure to create an opening through the neck into the trachea (windpipe). A tube is usually placed through this opening to provide an airway and to remove secretions from the lungs www.bmedesign.engr.wisc.edu

30. OXYGEN CPAP alignmap.com http://www.zorotools.com

31. Seizures • Triggers • Protection from harm • Medications • Diastat • Intranasal Versed • Sublingual medications

32. Equipment Needs • Specialized • Customized • Not often readily available

33. Schedule Speech/LanguageModalitiesAugmentative Speech Picture Board students.depaul.edu • http://www.autism-community.com/communication/strategies-and-solutions/

34. Springboard Speech/LanguageModalitiesAugmentative Speech IPAD • lausd.k12.ca.us log.friendshipcircle.org

35. Physical Mobility

36. Reverse Walker Gait Trainer

37. Gait Belt Hydraulic Lift Lifting/Transferring

38. Reclining Power Chair Scooter Power Mobility • hmebc.com • bestmedicalsuppliesonsale.com

39. Wheelchair Seating/Positioning

40. Particularly in individuals with Autism or Autism Spectrum Disorders difficulty filtering sensory input. nervous systems do not know what to block out and what to amplify. Lights Noises Faces Touch Smells Textures Sensory Issues

41. Other Equipment Resources • Home Health Care Agencies • Home Health Departments of retail stores/pharmacies • Hospices • Hospital supply companies • Mobility companies

42. Additional challenges • Inappropriate referrals to medical facilities, resulting in increased burden to already under-resourced facilities. • Misidentification of disability as an acute medical condition. • Refusal to serve based on mislabeled conditions

43. Our mission is to support and empower people with developmental disabilities to live, learn, work and play in the community.

44. CCBDD Services • Early Childhood Services & Supports • School-Age Services & Supports • Adult Services & Supports • Family Support Program • Community & Medicaid Services • Support Administration • Behavioral & Healthcare Services • Assistive Technology • Transportation • Quality Assurance