1 / 12

Lecture Presenters: Barbara Dorn, RN, BSW and Paul White, MS

Issues in Developmental Disabilities Prader Willi Syndrome Part 2: Support Service & Care Taking Questions & Answers. Lecture Presenters: Barbara Dorn, RN, BSW and Paul White, MS. Video. Least Restrictive Living Environments. The meaning of “least restrictive” for person with PWS

hada
Download Presentation

Lecture Presenters: Barbara Dorn, RN, BSW and Paul White, MS

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript


  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 shouldn’t 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

More Related