Chris&na Trout, RN, MSN University of Iowa Neuromuscular Program

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1 Chris&na Trout, RN, MSN University of Iowa Neuromuscular Program

2 Purposeful, planned process that addresses the medical, psychosocial and educa&onal/ voca&onal needs of adolescents and young adults with chronic physical and medical condi&ons as they move from child- centered to adult oriented health care systems (Blum RW, Garell D, Hodgman CH, et al. J Adolescent Medicine, 1993)

3 Transi&on is an ongoing process, not an event. The transi&on process should start early The adolescent should be the center of the process he/she and family should be involved in all aspect of decision making Coordina9on of services, providers, organiza&ons is essen&al!

4 Transi&onal Services Survey (n=1100 people) Of those, 250 young people in w/c (peds onset) Employment:! 40% students, not employed! 9.5% employed in preferred field! 73% want to work! 16.5% would lose benefits, will lose benefits! >50% of those employed have accommoda&ons at work Healthcare:! 75-80% rely on Federal programs like SSDI, Medicaid, Medicare! 24% rely on income from spouse/self! 68% have daily cares met by parents/family caregiver (ocen unpaid)! 67% employ care adendants (much reliance on Medicaid waivers)! 77% have transporta&on needs met by parents/family! 22% say the lack of access has a nega&ve impact on life

5 Goal directed healthcare Goal directed educa&on/voca&on Goal directed future This is not just transfer of care & records, or just geang too old to see a pediatrician

6 Differences in HC teams (pediatrics vs. adults)! Long term rela&onships knowing the pa&ent; star&ng anew! Less planned interac&ons with primary care (well- checks)! Communica&on between providers! Mul&- disciplinary care is needed! Constraints of insurance/managed care! Training of adult providers on childhood diseases (improving)! Plans to transfer to adult doctors and adult facili&es New buildings, new records, new networks, etc! Provider expecta&ons (the pa&ent speaks for themselves)

7 Conflict between independence & growing physical dependency Conflict between future planning when there is much unknown about one s personal heath. Incorrect informa&on about prognosis & future Poor communica&on or guidance by healthcare providers Fear: taboo topics, unknown future Lack of personal skill sets of pa&ent or of the parents/family! Psychosocially less sophis&cated Lack of resources:! Financial: services stop acer age 21! Limited resources in community! Limited providers who are knowledgeable! Limited homecare providers in general (nursing & aides) Paren&ng issues! Codependent rela&onships! Loss of role defini&on! Not fostering autonomy

8 Ask if there is a transi&on clinic, resources or guidance through school or your local clinic Contact your local voca&onal rehabilita&on office (government agency) Search the Internet! PPMD s adend the transi&on workshop, view previous slides on the website (archived)! MDA s Transi&ons Center website! State- specific Transi&on Resources Iowa Employment Policy Group publica&ons! Federal Resources Got Transi&ons?

9 RESOURCES Career Center Educa9on sec9on scholarships funding planning tools Independence sec9on home modifica9ons independent living Get involved sec9on Accessible Spaces Gallery Collabora9ve Wiki Project Educa9onal Webinars Featured blog of the week Transi9onal Services Survey

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11 Guided ques&ons for young people age 13-18! Understanding your NM disease! Health monitoring and health goals! Educa&on/plans for the future! Independence/autonomy/self advocacy Ques&ons for parents too at each age

12 Engage the person with DMD in discussion Acknowledge wide range of development Add content to each appointment! Clarify the nature of ques&ons! Answer ques&ons honestly No magic crystal ball! An&cipatory guidance what to expect

13 Ocen/Usually part of the clinic appt Talk with THE YOUNG PERSON with DMD Review standards of care Assess understanding & readiness! - reinforce monitoring, preven&on & early tx - ask if the young person knows why they take medicines - ask how they re engaged in healthy choices Review the role of the subspecialists (cardio, pulm, ortho) - Learn key players involved in care Review the role of the primary care provider - maintain local providers who know you Explore the financial aspects of care State and Federal resources for funding Insurance through parents Special needs trusts

14 Pulmonary health what does the PFT result mean? What do you think about bipap helping them breathe? Cardiac health What do they understand about the echo result? What do they say about taking heart medicine? Equipment and Therapy (PT, OT and AT consults) How do you get around? What would make you more independent? What are ac&vi&es help you stay healthy and ac&ve? How do you communicate your needs for assistance to others? Review diagnosis pathology How do you explain DMD to others? A class on rela9onships, paren9ng, sex & reproduc9on? - Review gene&c counseling; Yes, you can reproduce! - Ocen discover teen siblings who need gene&c counseling

15 Providers - An&cipatory guidance for changes in health, i.e. what to expect Parents Encourage and promote the young person to par&cipate in discussion & decisions Moving the teen into the self- direc2ng role, parents in suppor&ng role (when appropriate) Getng financial ducks in a row! Know key sources of funding for healthcare! Start talking to agencies that can help with planning

16 What has been your experience with illness? Readiness to engage in healthcare discussion & decisions ocen reflect personal experience with illness What if support is needed as an adult? Guardianship, durable power of adorney for decision- making Review advanced direc&ves (as appropriate) Open discussion about health vs. designing a specific plan Goal directed healthcare choices: Informa&on is available and accurate Readiness and interest in ac&ng on healthcare choices Support to make choices, with guidance..even if they re wrong

17 Goals as entering adulthood! Take charge of your health care informa9on Know how to reach the providers & pharmacy Know how to access your medical records! Be your own health care advocate Learn about your condi&on, treatment plan Be a part of discussions & decisions Take ini&a&ve

18 Use a transi9on tool or a[end clinic with a plan! Opens discussion, sets forth a plan Iden9fy designated ADULT providers who are willing to take young, transi&oning pa&ents (cardio, pulm, endo, urology)! Meet to discuss shared pa&ents & management! Maintain communica&on before/acer appts. Maintain care coordina9on through transi9on

19 Thanks!

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