Developmental Disabilities Nurses Association

1. Developmental Disabilities Nurses Association May 7th 2007 Albuquerque, New Mexico

2. Behavior and Mental HealthThroughout the Lifespan

3. Scott R. Stiefel, MDSstiefel@hsc.utah.eduAssistant ProfessorPediatrics, Adult and Child PsychiatryDivision of Child PsychiatryUniversity of Utah

4. THE FUTUREWhat is New in the World of Developmental Disabilities and Mental Health

5. The role of nursingIn the field of developmental disabilities?Discreet and different sets of understanding and skills

6. The world is moving very fastMore children with increasing severity of disabilities are presenting at earlier and earlier ages - needing services from all systems – and not getting them!

7. What is our current culture?

8. “When you really study the history of psychiatry, you find psychiatrists created mental disorders to suppress people. It’s intolerable.”

9. The SSRI’s have been “Black Boxed” by the FDA for use in children and adolescentsThe atypical antipsychotics may soon follow along with many other medicationsIn England and Canada they have been removed from use in this populationWhen will this flow over to adults?

10. It is difficult to turn on the TV or the radio and not see or hear an ad from a law firm advertising for people who have possibly had a problem with a specific medication

11. Ashley’s Treatment?

12. Will the fear of doing research on the most vulnerable of groups – children and adults with developmental disabilities and mental health issues - in effect shut research down?

13. Scott’s Top Ten Picks

14. Top Ten (plus one) • Numbers and complexity of developmental disabilities will increase • Severity of mental illness will increase • Dollars for Human Services will decrease • Choices will need to be made • Understanding and manipulation of Genetics will change the planet • Increased recognition that sleep disruption has a great deal to do with mental health • Neuroimaging will demonstrate extensive involvement of the white matter in multiple disabilities and will help us to understand brain function and mental illness in many ways • Increased understanding of the interrelationship of mental and physical health • The education system will need significant reform and resources • Treatments will need to become multimodal and less expensive • Anxiety disorders will be found to be the most prevalent disorders in individuals with developmental disabilities

15. Short Term • Reassess our practices and uses of medications and other treatment strategies • As we talk with each other, separate real risk from perceived risk • Education of professionals • Education of the public • Advocate for increased research in children and adolescents and include studies of children with disabilities • Advocacy for parity for mental health treatment that also includes payment for all types of therapy that include psychotherapy and behavioral therapy • Lobbying for all of the above and to increase human services across the board

16. Long Term • More research in the area of diagnosis medication use in this population • Investigation of polypharmacy • Research regarding multimodal treatments • Parity at all levels • Education at all levels

17. Recognize that we have probably gone too far in our over-reliance on medications for the treatment of mental illness in folks with developmental disabilities

18. Some of our “sins” • Failure to incorporate multimodal, habilitative mental health treatment models • Lack of diagnostic clarity before treatment • Failure to take enough time • Non-specific treatment of aggression • Over-reliance on care-givers single source information • Failure to recognize abuse, and environmental contribution and attempts to “fix” with medications • Failure to define treatment outcomes and track data to demonstrate treatment outcome • Failure to recognize medication side effects and interactions • Some practices of polypharmacy

19. Our goal is toUnderstand the person’s experience of the worldand tounderstand other’s experience of the person.

20. Observations over the years • It is much easier to give a medication • In complex individuals, medications are never more than 20% of the equation • Human behavior is complex • The adults that have the most severe behavior problems have been in large part systematically created • Boredom and communication problems are big issues • The hardest thing for parents, teachers, and caregivers to do, are run behavior plans • Structure and consistency for most of us are very difficult • Home is usually conceptualized as a place to relax and be unstructured • Behavior plans are written for the parents, staff and teachers to change their behavior – this is not a bad thing • Most behavior plans are too complex • Having a child with chronic mental illness is probably the hardest thing on parents and family systems • We under fund education, special education has increased the complexity of the problem • We under fund human services • We are all too busy and work too much

21. Observations over the years continued • Few professionals really understand behavior and how to change behavior • Even fewer can effectively teach behavior modification • Analysis and teaching of behavior modification is almost impossible in an out-patient classical clinic visit • In complex individuals, stereotypic behavior strategies usually don’t work directly out of the cookbook. They need to be modified and individualized • No family can do this consistently and in a sustained fashion, without training, supports and respite • In home behavior services are often the most effective strategies at present – usually not paid for and I am not sure we really know how to roll them out • Relationships are the center of health care

22. What can we learn from specific syndromes? • Prader Willi Syndrome • Smith Magenis Syndrome • Downs Syndrome • Autism Spectrum Disorders

23. Why Learn about Human Behavior?

24. What do children, adolescents, and adults need to be happy? • Social relationships • Meaningful school experience • Present satisfaction • Future prospects

25. Every individual that suffers a physical illness, will have an emotional reaction to that illness

26. An opinion-Humanity is defined by the extraordinary need of the individual to manipulate and control their environment Behavior is often our most effective tool

27. Animals do not have behavior problems unless their environment changes

28. Developmental Context • Always evaluate behavior in the context of developmental appropriateness. • This means that you need to understand normal development.

29. Diagnostic Differential of Behavior Problems • Instinctive • Learned maladaptive behaviors • Central nervous system dysfunction • Pervasive Developmental Disorders • Medical disorders or drug induced (iatrogenic) • Dynamically created based on experiences of the world and personality structure • Communication problems • Boredom • A mix of the above – complexity that includes context and situation • Mental illness

30. All psychiatric syndromes are patterns of observable behavior changes. The Diagnostic and Statistical Manuals of Mental Disorders represent evolving consensus as to what these patterns are. The patterns are subjected to scientific rigor that will over time validate or invalidate.

31. Eibl-Eibesfeldt 1979 Added • The scope of ethology includes morphology, ecology, genetics, phylogenetics, developmental biology, sociobiology, and physiology. • Functional aspects of behavior • Exploratory • Shelter seeking • Care eliciting • Care giving • Sexual • Mimicking • Combative • Escape, Avoidance, etc. • The role of these behaviors in adaptation.

32. The Brain – Body Connection An example: CAD leads to depression leads to CAD

33. Genes influence behavior, behavior has an impact on the environment, the environment has an influence on genetic expression The Circle

34. As the genetics and pathophysiology of mental illness are elaborated, there will be increased fit between consensus opinions (DSM IV) and disease classifications. We have a long way to go

35. Mental illness can be best conceptualized as chronic and extreme, internal stress to the individual • The links between stress and disease are well established. • The body eventually loses capacity in these situations to respond to new and novel stressors – necessary for adaptation. • Stress is toxic to the brain.

36. Cultural Expectations and Influences • Adaptive and maladaptive behaviors are largely culturally defined. • Our current culture has little tolerance for the spectrum of normal childhood behavior. • Cultural taboos. • Little cultural competence among health care providers.

37. Neurodevelopmental Disorders • Intellectual/Cognitive Disability (Mental Retardation) • ADHD • Autism Spectrum Disorders • Schizophrenia • Bipolar Spectrum Disorders • Other Affective Disorders • Anxiety Disorders • Etc.

38. Early InterventionPrevention at all levels

39. These folks Are at the high risk for sexual, physical, and emotional abuse and neglect and are generally not provided pro-active preventive treatment

40. Remember most mood and anxiety disorders • Can present like ADHD in children • 70% of children who meet criteria for major depression present with significant somatic complaints • Is this the same in an individual with DD?

41. It is unusual for an individual admitted to a psychiatric service to have only one diagnosable conditionMultiple sources of morbidity and comorbidity are the rule, not the exception

42. Often these individuals have • disorganized attachment • impaired socialization skills • delayed or impaired consolidation of their sense of self

43. And have combinations of problems with • arousal state management • impulse control and attention • disorders of activity • mood regulation • anxiety state regulation

44. We must know the early developmental history from 0 to 5 years • The Pervasive Developmental Disorders • Pediatrician’s records • The family • The developmental history in all domains • Early health problems • The chronicity of the problems • Temperament and attachment

45. A critical question?Are these symptoms (behaviors) the way it has always been (the person just got bigger and stronger) or has there been a change in personality and behavior?

46. Behavior Phenotype An increased probability or likelihood that people with a given syndrome will exhibit certain behavioral or Developmental sequelae as compared to those with out the syndrome (Dykens 1995) Psychiatric Phenotype?

47. Behavior Phenotypes • Fragile X • Downs Syndrome • Tourette’s Syndrome • Sotos Syndrome • Turner Syndrome • Tuberous Sclerosis • Prader Willi and Angelman Syndromes • Cornelia de Lange Syndrome • Smith Magenis Syndrome • Cri du Chat • Autism – to be sorted out • Many others

48. SLEEP DISORDERS • Almost completely ignored • high incidence of central, obstructive, and mixed types of apnea in DD/MR • sedation that leads to irritability and aggression • this is something that we can study and track • take the history • treat the disorder – do not assume non compliance • Come to my lecture this afternoon at 1:30

49. Describe the behaviorsDo not label the behaviors

50. Temperament • Many problems are due to mismatches of temperaments • Assess temperament before anything else • Many solutions rely on better matches