Pre-adult to Grown-up.

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Exceptional Needs and Disabilities: Information for Adults Who Care for Teens, 2003 ... 500,000 Children with Special Health Care Needs turn 18 consistently ...
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June 2005 Adolescent to Adult Health and Other Transition Issues for Children and Youth with Special Health Care Needs

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Adolescent Health Transition Project (AHTP) Sponsored by Washington State CSHCN Program E-mail: Address: Box 357920 University of Washington Seattle, WA 98195-7920

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What you will learn today Who are young people (youth) with unique medicinal services needs (YSHCN)? What is human services - and other-move? What are the hindrances to move? By what method would we be able to bolster move? What do YSHCN and their families need? What are some "move devices"? (Immature Transition Resource Notebook?)

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Youth with Special Health Care Needs (YSHCN) > 15% of young people 12-17 have an exceptional medicinal services need. Young men are twice as likely as young ladies to get specialized curriculum administrations. ~ 8% of young people 10 to 17 have some kind of movement impediment. What\'s Up? Uncommon Needs and Disabilities: Information for Adults Who Care for Teens, 2003

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YSHCN: Washington State ~ 22% of 8 th and 12 th graders and almost 25% of 10 th graders report: they have a physical, enthusiastic or learning handicap or long haul wellbeing issue 2002 Washington State Healthy Youth Survey

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Youth with Special Health Care Needs (YSHCN) 90% of YSHCN achieve their 21 st birthday 45% of YSHCN need access to a doctor acquainted with their wellbeing condition 30% of all young 18-24 years old do not have an installment hotspot for medicinal services 40% YSHCN show ER utilize every year (versus 25% of "ordinary" youth) YSCHN experience expanded school intrusions

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Life Expectancy: Sickle Cell Disease Life hope Courtesy of John Reiss

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Life Expectancy - Cystic Fibrosis Life hope Today, more than one-portion of all people with cystic fibrosis are beyond 21 years old.

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500,000 Children with Special Health Care Needs turn 18 consistently Newacheck & Taylor (1994)

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Developmental Tasks of Adolescence and Young Adulthood Separate from guardians Develop a solid mental self portrait Set & accomplish instruction & professional objectives Financial freedom Independent living Marriage – Partnership Participate in group life Be cheerful – in place psychological well-being John G. Reiss, PhD

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Transition Areas Health Care Health advancement and preventive consideration Specialized care Prevention of auxiliary inability School to Work Education Vocational availability Career decision Dependency to Independence Housing Adaptive living abilities Dressing/prepping Food obtaining and arrangement Budgeting

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National CSHCN Goal #6 All YSHCN will get the administrations important to make proper moves to all parts of grown-up life, including grown-up human services, work and autonomy.

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Health Care Transition (HCT) "The deliberate, arranged development of teenagers and youthful grown-ups with perpetual physical and medicinal conditions from kid focused to grown-up situated human services framework." Transition from kid focused to grown-up social insurance frameworks for immature with constant conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993; 14:570-576

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Health Care Transition (HCT) Consensus Statement Goal of HCT: Maximize long lasting working and potential through the arrangement of high caliber, formatively suitable medicinal services benefits that proceed continuous as the individual moves from immaturity to adulthood. AAP, AAFP, ACP-ASIM Consensus explanation on social insurance move for youthful grown-ups with exceptional medicinal services needs. Pediatrics 2002;110:1304-6

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Culture of Care: Pediatric Provider Family-focused Developmentally situated (School and life progress) Nurturing, abnormal state psychosocial support Interdisciplinary Involve guardian heading and assent Flexible

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Culture of Care: Adult Provider Individual-based consideration (not family) Disease centered (not formatively) Cognitive methodology (as opposed to sustaining) Multidisciplinary (instead of interdisciplinary) Requires patient to be self-ruling and capacity freely From \'Transitioning with Diabetes – Patients\' perspectives of a facility for under 25 year olds\'

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Culture Shock ! Tension delivered when a man moves to a totally new environment. Not realizing what to do or how to do things Not comprehending what is suitable or wrong Feeling old practices are not acknowledged as or considered as should be expected in the new circumstance Feeling of an absence of bearing

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Barriers to Successful Health Care Transition – (Pediatricians) Difficulty recognizing grown-up essential consideration suppliers Adolescent resistance Family resistance Lack of institutional bolster Time for arranging Resources Personnel Survey of Pediatric Primary Care Providers Peter Scal, MD Pediatrics 2002; 110:1315-1321

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Barriers to Successful Health Care Transition – Youth/Family Little family mindfulness & information of HCT Lack of planning of youth for HCT Adult situated therapeutic suppliers absence of learning of adolescence onset interminable conditions Transition regularly incited by age or conduct instead of availability Differences in Child and Adult Medicine Health Care Transition Study: 34 center gatherings and interviews with youth/youthful grown-ups, family wellbeing care suppliers (Institute for Child Health Policy)

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Barriers to Successful HCT: Challenges for Adult Providers Provider observation that some preventive administrations might be pointless (e.g. \'not sexually dynamic\') Complete exams are tedious for this populace (extraordinary hardware? sedation?) What to do with unusual results – will the patient endure more intrusive testing Who advocates for the patient, esp. on the off chance that guardian/gatekeeper not accessible Transitioning Issues for Patients with MR/DD, Shari Robins MD May 2004 Presentation.

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Barriers to Successful HCT: Challenges for Adult Providers Requires grown-up suppliers to secure new information and aptitudes to tend to medicinally complex youthful grown-ups with "adolescence onset" conditions Patients and families might challenge both clinically & interpersonally Need to acknowledge social & mental parts of disease Expectations of patient self-administration abilities

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Barriers to Successful Health Care Transition (WA State) Lack of therapeutic summary* Medical jargon*** As a tyke, not being included in choices identified with his or her own wellbeing care** Burned out on human services in pediatric setting** Not making arrangements for transition** *teens, **young grown-ups, ***teens and youthful grown-ups Adolescent Health Transitions: Focus Group Study of Teens and Young Adult with Special Health Care Needs. Fam Community Health 1999; 22(2) 43-58

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Barriers to Successful Health Care Transition (WA State) Pediatric guardians more minding than grown-up caregivers* Difficult finding a grown-up provider** Not starting early*** Developmentally, teenagers are centered around here and now* Parents not having any desire to let go* continued…

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Barriers to Successful HCT A Surprise Factor Learn how to end long haul, sincerely loaded connections – a system in which to say \'farewell\'. Pediatricians make it more troublesome for the family/youth to move into grown-up framework by keeping on sustaining and be accessible. Graduation endorsements; Transition honors

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Why move to grown-up social insurance?

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Psychosocial Benefits for Youth Promotes ordinary social & enthusiastic improvement Promotes constructive self-idea and feeling of capability Supports constructive mental self portrait and independence Promotes free living Supports long haul arranging and life objectives Broadens arrangement of interpersonal and social backings

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Health Benefits for Youth Receipt of grown-up situated essential and preventive consideration – Screening for and treatment of grown-up wellbeing issues Sexuality, ripeness, and regenerative wellbeing

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PAP smears Mammograms Colon disease screening Menopause Pulmonary embolism Hypertension Type II Diabetes Osteoporosis Stress incontinence Glaucoma Mitral disgorging Menorrhagia Smoking end Anorexia Thyroid issue Deafness Obesity Anemia Sleep aggravation Decubitus ulcers GERD Medical Issues in Adults Survey of Clients in Adult Training Centers (MR Diagnosis) – Case Western Reserve; Shari Robins MD

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Health Benefits for Youth Adult-situated claim to fame care – Direct involvement with intensifications of the endless condition in grown-ups Access to grown-up inpatient administrations and subspecialists

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Benefits to Pediatricians & Pediatric Facilities Practice inside range of preparing and intrigue Consistent with association\'s main goal & center Make space for new patients

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Benefits to Internists & Adult Facilities Practice in another territory Responsive to a huge need Consistent with office mission & center Expanded patient base Clinical examination open doors

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Supporting Health Care Transition . . .

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Goals of Individual Health Transition Identified medicinal services supplier Written human services move arrangement by age 14 years A ceaselessly current therapeutic rundown Health care supplier who utilizes far reaching rules for essential consideration Affordable and persistent medical coverage scope 2002 Consensus Statement – AAP/AAFP/ACP (Am Coll Physicians); Pediatrics

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Transition Begins in Childhood Career arranging starts in utero Focus on wellbeing advancement and typical development and improvement Prevent optional handicaps Promote self-consideration and freedom Promote socialization and associate exercises Encourage early volunteer and later work encounters Refer to formatively strong administrations, early mediation, uncommon

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