CHRONIC MEDICAL CONDITIONS

1. CHRONIC MEDICAL CONDITIONS A Multidisciplinary Team Approach To Provide Continuous and Supportive Care

2. We are the Team • The CONSUMER • Family • Direct care staff • Supports • Health care pros • Therapists • Oversight people

3. The consumer is always the center of focus CONSUMER

4. Inner Circle Outer Circle Who might be included in the circle of supports

5. Who Is This Training for? • You • Introduce yourself • How do you support the consumer

6. Health Care Coordination • Ensuring the health and safety of the individual you work with • The consumer and everyone supporting this consumer is involved • Let us take a cue from Core training

7. Five Responsibilities of the Support Professional • Observe Use your senses – sight, hearing, smelling – to detect when changes are taking place with a person.

8. Five Responsibilities of the Support Professional • Document: Documenting what you’ve observed provides a snapshot for how a person is doing at a certain point in time. You’ll need to include both behavioral and physical observations in your documentation.

9. Five Responsibilities of the Support Professional • Report: Besides documenting what you’ve observed, you’ll often have to tell others – such as your supervisor, the individual’s legal representative, and medical personnel – about a person you’re caring for. Be ready to discuss: ·     Changes in a person over time ·      How long the changes have been happening ·      How often they change ·      Any new activities or changes in the person’s diet, or anything else that might provide clues as to why the person is different.

10. Five Responsibilities of the Support Professional • Take Action: After you’ve reported a person’s situation to someone else, YOU must make sure people you care for receive the medical attention they need. You’ll need to learn the difference between life-threatening and non-life-threatening situations so that you’ll know what to do in each case.

11. Five Responsibilities of the Support Professional • Follow Up: You must follow up on the people who are receiving medical care to make sure they return to an optimal state of health. Tasks may include making sure the person completes prescribed rounds of medications, documenting changes in the person’s health, and pushing for adequate health care when the person does not show a positive response to the current treatment plan.

12. Deciding What Records to Keep • Document what you observe • Forms used match the issues observed • Bowel charts, Urine charts, menstrual cycle charts, weight charts • Blood Pressure records, accu check diaries…. • MARs

13. Records • Appointment logs • Lab reports, x-ray and other test results • Support plans • Behavioral • Incident reports • Name some more • Keep records of past medications

14. Records • Keep a record of different doctors the consumer has seen and for what reason • Keep a record of past medical issues • Medications that have been tried and did not work • Therapies

15. Health Information • Keep information current • File properly, see chart of forms used that states location • Skin charts,etc…. • Now that the charts and forms are used • Who should you share them with

16. On Going and Life Long Needs • Most consumers have ongoing needs for multiple services • These needs are not stable • Many factors result in changes in the mix and intensity of needs • Underlying conditions • Normal development • Aging

17. Therapy • Therapies are most effective when started early • Developmental processes, especially during the first 5 years of life, build on each other and form the foundation for future development

18. Continuing • Technology changes • Life circumstance changes • Relationship to family • New assistive devices

19. Care Planning • Assessing needs • Develop a treatment plan to meet those needs • Specify who will provide each plan element • Arrange for these services • Follow-up to ensure that services were in fact delivered and are they having the desired effect

20. Care Planning (cont) • Periodic re-assessment of needs and adjusting treatment plans accordingly • Aging processes bring about health changes

21. Our Part in this • Ongoing • Each of us according to our level of training and services we provide • Keep up with the information flow

22. Assessment (Continued) • All providers have the training necessary to meet needs • Keep all health and functioning information current • Medication oversight in place

23. Knowing a Consumer’s Baseline • Health care for a consumer requires • Knowing a consumer as an individual • Knowing the “normal” for this consumer • Knowing the medical complexity of this individual (present and past health issues) • Acquiring,if needed, the skill to meet this consumer’s needs

24. Developmental Disabilities • Mental Retardation • Autism • Cerebral Palsy • Spina Bifida • Prader-Willi Syndrome

25. A Limited Overview • Focusing on Primary Health Issues • Focusing of Co-Health Issues • Focusing on associated risk factors • Focusing on care needed • Focusing on records needed • Focusing on the flow of information

26. Mental Retardation • Cognitive functioning measured at 69 or less with onset before age 18 • Life and health issues: • Communication, social/interpersonal skills • Self care, self direction, functional academic skills • Health and safety

27. Common Associations • Maladaptive behavior and/or psychiatric disorders • Cerebral Palsy • Seizure disorders • Autism or autistic – like qualities

28. MR Associations continued • Vision impairments • Hearing impairments • Attention deficit hyperactivity disorder

29. Monitor MR Risk Factors • Evaluate yearly--vision and hearing • Mental and Behavioral issues • Minimize significant changes in caregivers and environment • Regression and/ advances of skills learned • Oral and dental self care

30. Monitoring continued • Personal Hygiene • Speech and language progress • Socialization Issues • Medication needs

31. DOWN SYNDROME • Mental Retardation • Low muscle tone • Small mouth • Small ears, 75% with hearing loss • 50-70% have chronic or frequent infections • Vision Impairments in 60% • Frequent eye infections

32. Down Syndrome (cont.) • Congenital heart disease (50%) • Thyroid disease (15%) • Cervical spine abnormality (10%) • Seizures (5-10%) • Obesity • Psych and behavioral Problems • Dementia in older years

33. Autism Spectrum Disorder • A milder form– Asperger Syndrome • Symptoms vary from person to person • Involves communication skills • Social interactions are affected • Involves Repetitive motions

34. Autism Associated Issues • Sensory Impairment • Painfully oversensitive to certain sounds, textures, tastes and smells • May have impaired sensitivity to hot, cold, or pain • “ a light touch could make them cry out and yet may not feel a broken arm”

35. Autism Continued • Cognitive Delay • Some areas of ability may be normal while others very weak • Varying degrees • Higher functioning –Asperger Syndrome

36. Autism Continued • Seizures • Often begin in early childhood or adolescence (generally get worse as they grow older) • Fragile X affects 2-5% • Tuberous Sclerosis in 1-4% (genetic-causes tumors to grow in the brain and other vital organs)

37. Autism Continued • May also have hyperactivity disorders • May have Attention Problems • Do not like “changes” • The earlier the intervention the better the response • Many are able to live very productive lives

38. Autism - Risks • Self injurious behavior • Compulsive behavior • May not feel cold • May not feel pain • Various behavioral issues • Seizures

39. Autism continued • Diet as therapy??? • Speech Therapy • Behavior Therapy • Psych medications • Seizure medications • Safety needs

40. Spina Bifida • Compromised spinal cord to various degrees • Myomeningocele creates severe damage to the nerve pathways • Severe damage is what we will discuss

41. MylomeningoceleSpina Bifida • Spinal deformities • Paralysis, decreased sensation or muscle weakness below spinal opening • Bowel dysfunction • Bladder dysfunction • Hydrocephalus • Swallowing Problems • Possible learning problems

42. Health Risks and Issues • Skin Breakdown • Immobility • Lack of sensation • Use of orthotics • Bladder problems • Urinary track infections • Bladder may not empty becoming over filled • May lead to Kidney failure and blood pressure issues

43. Health Risks continued • Dysphagia-difficulty swallowing • Most often seen in childhood • Sudden or slow to develop • Immediate intervention is necessary

44. Health Risks continued • Bowel incontinence from impaired nerve function • Diarrhea • Constipation • Obesity- due to low levels of physical activity

45. Health Risks continued • Respiratory • Restrictive lung disease due to progressive scoliosis (preventable?) • Latex Allergy • Lack of weight bearing on bones • Unbalanced weight management

46. Health needs • Monitor skin • Positioning needs • Adaptive supports fit and used correctly • Monitor nerve functioning • Bowel and Bladder • Diet, weight, blood pressure • Psych needs

47. Management • Keep up with the flow of health issues • Keep medical records current • Be Proactive • Pay attention to details—Observation • Timely intervention

48. Cerebral Palsy • Spastic Issues in 50% • Mostly lower extremities • May involve one arm and leg same side • Athetoid-weak floppy muscles in 20% • Ataxic- weak floppy muscles in 10%

49. Cerebral Palsy • A central nervous system disorder • Non progressive • Goals: promote optimal function, maintain health, gain new skills and to anticipate-prevent-and treat complications • There may be other associated deficits

50. Health Issues- Spastic • Greater if all limbs plus neck and trunk are affected (quadraplegic) • May have severe cognitive delay • Seizures • Hemiplegic-mostly lower extremities • Average cognition, may have seizures • Hemiplegic-one arm/leg same side • Average cognition, may have seizures