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Issues in Developmental Disabilities Prader Willi Syndrome Part 2: Support Service

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The meaning of 'least restrictive' for person with PWS. Promoting choice, ... Choice between limiting food or giving in and avoiding temper outburst ... – PowerPoint PPT presentation

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Title: Issues in Developmental Disabilities Prader Willi Syndrome Part 2: Support Service


1
Issues in Developmental DisabilitiesPrader
Willi SyndromePart 2 Support Service Care
TakingQuestions Answers
  • Lecture Presenters
  • Barbara Dorn, RN, BSW and Paul White, MS

2
Video
3
Least Restrictive Living Environments
  • The meaning of least restrictive for person
    with PWS
  • Promoting choice, independence, and
    self-correction
  • For people with PWS, self-corrective services may
    not be an option
  • May need to set more limits, provide more
    structure, and use more intensive behavioral
    support
  • Caregivers may need to re-educate themselves
    around these issues

4
Residential Services
  • Pros and cons in provision of residential
    services
  • Mixed versus all persons with PWS
  • Issues pertaining to food access
  • Number of people living together
  • Need for sameness
  • Two-person model
  • Group living - 6 to 8 may be more manageable
  • Individualized programs

5
Behavioral Response and Emotional Support
  • Persons with PWS control over temper and
    emotions
  • People with PWS may require vigilance
  • Tenuous emotional control
  • Effect of changes in hypothalamus regulation
  • Once emotional control is lost, may be difficult
    to come around
  • May lack knowledge and skills in handling
    frustration, anxiety and anger

6
Food Intake
  • Choice between limiting food or giving in and
    avoiding temper outburst
  • Caregiver needs to be proactive
  • All food issues should be planned for
  • Issues with new staff
  • Idea is to neutralize food

7
Intervention and Support Consultation for
Families and Support Workers
  • Frequent situations for behavior consultants
  • Number one issue lack of understanding
  • Anger management
  • Self-injurious behavior
  • Increase supervision
  • Teach replacement behaviors
  • Loosening/tightening of structure
  • Education of community partners

8
Behavior Management
  • Use of consequences for behavior management
  • Yes, if harm to self, others or property
  • Need to be immediate
  • Reason shouldnt be punitive
  • Community outings can be motivating
  • Alternative methods to handling anger and
    frustration
  • Example of stealing food
  • Need to consider sequencing, processing deficit

9
Primary Advice
  • Advice regarding behavior to parent, caregiver,
    teacher or support person
  • Develop a positive relationship
  • Involves a balance between compassion/support and
    setting limits
  • Always be a step ahead
  • Food issues and structuring routine and
    predictability
  • Use of visuals, writing things down to
    accommodate short-term memory
  • Teaching and use of repetition and obsessive
    compulsive tendencies

10
An Ethical Issue
  • Should person be allowed to eat as much as they
    want? Do we have right to limit food?
  • Opinion should be limiting access to food
  • Comparison/contrast with alcoholics biological
    component
  • Analogy of person with severe anorexia
  • Situations where person with PWS in escalated
    state
  • Use of diversion, avoid reasoning, limit talking,
    avoid confrontation, and neutralize situation

11
Mental Health, Aging, and Illness
  • People with PWS and higher incidence of mental
    illness
  • Research shows more significant mental health
    issues and psychosis in people with PWS due to
    maternal uniparental disomy
  • May be part of PWS, but inconclusive evidence
  • Weight issues and normal life span

12
Comments Related to Focus in Research
  • New areas in research
  • Genetics subdivision of people with deletions
  • Behavior and medications SSRI (Prozac, Luvox,
    Celexa), and 5-HT (precursor to serotonin)
  • Obesity research should revolve around
    hypothalamus
  • Gastric bypass surgery for morbid obesity
  • Ghrelin hormone levels
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