Readiness for Independence: Transition Programs for Adolescence with ABI. Julie Haarbauer-Krupa, PhD, CCC-SLP

Transcription

1 Readiness for Independence: Transition Programs for Adolescence with ABI Julie Haarbauer-Krupa, PhD, CCC-SLP

2 Brain injuries occur across the lifespan.. Graduation from high school.then what? 2

3 Outcomes: What we want to happen

4 Outcomes: What we don t want to happen 40-60% 60% 60% 30%

5 What survivors of childhood brain injury say I want to go to college I want to drive I want to go out with my friends I don t need to study I don t want to viewed as someone with a disability

6 What research tells us about transition Individuals with developmental disabilities Higher school drop out rates (CEC, 1994) Lower employment rates (Blackorby et al, 1996) Lower rates of independent living (Kierman, et al., 1991) Less likely to pursue post-secondary education (Blackorby et al, 1996) Success depends upon (Wells et al, 2003): Disability severity Access to resources

7 What research tells us about transition Individuals with complex medical conditions ( e.g. solid organ transplant, diabetes), Important to have a medical home (Strikland, McPherson, Weissman, van Dyke, Huang, Newcheck, 2004) Healthcare responsibility and self management ( Bell, et al., 2008; Steinberg, 2001; Palmer et al., 2004). Best when responsibility for care moves from parents to adolescent.

8 What research tells us about transition with TBI Complex needs due to heterogeneous population Wagner et al, 2005 TBI survivors enrolled in special education have lower rates of employment and less enrollment in post- secondary education. Todis et al, 2008 Often steered to life skills programs in school Less likely to enroll in post secondary education May enter special education program close to graduation May graduate with their class even if not ready Success depends upon linkage to support services such as vocational rehabilitation

9 What s Important For Transition Medical Home Self Determination and Self Management Personal Responsibility A Formalized, Individualized Plan Accessible Environments Circle of Support

10 Transition Program Model Development N=2 Cognitive Rehab Focus Selfmanagement using cell phones Driving process Funded by Rehabilitation Services, Children s Healthcare of Atlanta 2010 N=10 Added vocational counselor consult, leisure, fitness, peer coaches and student volunteers Funded by research grant for cell phone technology. Focus Groups 2011 N=10 Added peer mentors, vocational component Funded by donation from the Raisin Hope Foundation and Rehabilitation Services 2012 N=11 Continued with peer mentors, vocational counseling intern GA Voc Rehab Text messaging Reminder system Funded by donation from the Raisin Hope Foundation Atlanta Dance Marathon

11 Program Aims for Participants Goals for education or employment after high school Support along the way to meet these goals Transition (not transfer) to adult medical care 11

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13 Program Recruitment Recruitment sources Rehabilitation Discharge Lists School systems Brain and Spinal Injury Trust Fund Commission Lists Brain Injury Association of Georgia Medical Specialists Transplant Oncology Admission Eligibility Acquired Brain Injury Between the ages of 14 (entering 9 th grade) and 21 Return participants have an incident that changes their status 13

14 Program Component Pre-Program Recruitment Two weeks during the summer Cost around $15, to run the summer portion Includes staff time, materials, lunch and one outing. Families transport to program Model can serve participants each session Post Program IEP Technical Assistance Phone consultation 3 and 6 month follow-up 14

15 Other aspects of the program Research and data collection Opportunities for students Georgia Institute of Technology Emory University Emory University School of Medicine Georgia State University University of Georgia University of West Georgia Oglethorpe University University of Wisconsin-Madison Survivor Employment Opportunity 15

16 Age Gender Type of Injury TBI ABI Time post injury/illness Participated in a Rehab Program New Participants years Males, 4 females 6 months -16 years 17/18 Own a cell phone 18/18 Ethnicity Caucasian African American Hispanic Insurance Private Medicaid None

17 Medical Home Definition (AAP, AAFP, 2002) has a usual source of care has a personal physician or nurse has no problem obtaining referrals when needed has received effective care coordination when needed has received family centered care. Family centered care is generally defined by parents reports of their relationship with the medical providers including the sense of feeling like a partner in the care of their child and being able to get needed healthcare information from providers

18 Medical Symptoms and Medical Home for Participants Medical Symptoms Identified Fatigue-100% Seizures-30% Focal Weakness-70% Depression-20% Temperature dysregulation- 50% Muscle Pain or stiffness 40% Headaches-60% Incoordination-80% Sleep Disturbance-40% Temper Outbursts-70% Substance Abuse-20% Medical Home (as defined by AAP and AAFP)-0% met all criteria Usual source of care-55% Have a personal physician or nurse-77% Can obtain referrals as needed-77% Coordination of care-33% Family Centered Care-55%

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20 Self Determination Self Determination Self-Management All participants could indentify post high school goals 12/18 able to identify the steps for achieving those goals Post program satisfaction survey indicated participants agreed they had learned to better understand their needs and be involved with planning Using cell phones for time management-60% Entered program with identified circle of support 10% Developed own circle of support during the program- 100%

21 Successful People have goals and challenges 21

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23 Building skills for self advocacy Positive Psychology University of Pennsylvania Authentic Happiness Site Brief Strengths Assessment Examples: Vitality, kindness, love of learning

24 Building Skills for Self-Advocacy 24

25 Building Social Capital 25

26 Peer Coaches The cool factor (Turkstra) Create routines Be a cognitive mentor Provide supports so positive behaviors can happen- in the areas of communication and self management In collaboration with Lyn Turkstra, PhD, University of Wisconsin

27 Communication Intervention Peer coach training Understanding TBI OWLS Strategy ( Turkstra and Haarbauer-Krupa, 2010) Social Capital 27

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29 Communication Skills Positive Communication Natural Consequences 29

30 Using Technology as Aids 2010 Research Grant : Using Cell phone technology as a cognitive prosthesis 2011 Participant s personnel cell phones to set alarms and reminders 2012 Interactive Text Messaging reminder system ( Cheng, 2012) 30

31 Personal Responsibility How much are parents doing for teens after a brain injury?? What are teens doing to help themselves after a brain injury? 2010 Program: Only 1 participant had attended an IEP meeting or and only 3 understood their medical care 2011 Readiness for Independence Questionnaire

32 Readiness for Independence Questionnaire (RIQ) Haarbauer-Krupa & Gilliland, 2011 Based on Readiness for Transition Questionnaire (Gilliland, 2010) Identified Adolescent Responsibility and Parent Involvement Piloted on Teens with Kidney Transplants Internal Consistency-Teen RTQ: (Cronbach s Alpha=.857) Parents RTQ: (Cronbach s Alpha=.846) Two sections added: Academic Planning and Self Care Pilot with participants ages years with Acquired Brain Injuries (ABI)

33 Readiness for Independence Questionnaire 33

34 RIQ Findings: Teen Rating Teens describe themselves as Mostly Ready for taking care of their medical and self care behaviors Somewhat Ready for academic planning

35 Teen Report of Responsibility Involved with Taking medication Explaining medical condition to others Studying for tests Seeking help at school Free time planning Exercising and playing sports Appointments with friends Not Involved with Scheduling specialty care Prescription refills Knowing insurance coverage Communicating with medical staff Scheduling the SAT Applying for a job Transportation Meal Preparation

36 RIQ Findings: Parent Rating Parents describe teens as Not at all ready for taking over medical care Somewhat ready for taking over academic planning and self care

37 Parent Report of Teen Responsibility Involved with Taking medication Attending medical appointments Attending school meetings Studying for tests Making appointments with friends Not Involved with Specialty appointments and labs Ordering refills Insurance coverage Communicating with medical staff Applying for a job or college Making decisions for school program Transportation Preparing and eating healthy meals

38 Accessible Environments Public Transportation only available in metro Atlanta Participants in rural areas have to travel minutes to reach resources Participants in program with license :1 Participants with learner s permit: 1

39 Individualized Plan Written Plan What did their current IEP look like? All IEPs reviewed for content by an experienced special education teacher Do they have a transition plan? Each IEP was reviewed to identify the presence and quality of a transition plan. Looking for a person-centered planning focus Are they connected to Vocational Rehabilitation?

40 Individual Plan IEP 12/ Plan 1/18 Academic Track 10/12 Steered to life skills Transition Plan 5/5 Graduated with class or already graduated 4/12 ( some choose not to enroll) 4/18 Examples of transition plans:. will identify what he wants to do after high school will identify a job for after high school. will decide what he wants to do after high school

41 Examples of IEP Issues Encountered In current IEP Lack of individualized specific Transition Plans Students not given the chance to make up or participate in academic content Steered to life skills without specific individualized goals Graduating with class when extra time in school possible Change in eligibility from TBI to Moderate Intellectual Disability Follow-up Denied private rehabilitation due to school Medicaid billing Graduated without parent agreement Not acknowledging parent disagreement with placement

42 Circle of Support

43 Building a community Group Activities Outings

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45 Facebook Group 45

46 Defining interests Vocational Leisure Have my interests changed since my brain injury?

47 Defining interests Vocational Leisure Have my interests changed since my brain injury?

48 Health and Wellness Fitness A certified athletic trainer provided an individual exercise program for each participant Leisure Participants completed a leisure preference survey A therapeutic recreation specialist met with participants to review their preferences and identity resource needs Program volunteers compile resources in participants' community

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50 Health and Wellness: Understanding Medical Care Needs 50

51 Vocational Interests After high school: Work School What can be done while in high school for career development? 51

52 Vocational Interests Vocational Interest Inventory Each Participant completed the Strong and identified post high school goals for work or education Georgia Vocational Rehabilitation Vocational Counselor Reviewed vocational interests, neuropsychologicqal testing, IEPs and transition plans Connected participants with vocational counselor in their community

53 Driving: The Rehabilitation Process Driving Simulator Written test

54 Program Effectiveness Participant and Parent Satisfaction Gains in personal responsibility Increased access to resources Increased Community Participation

55 Readiness for transition Building capacities Medical management Health and Wellness School meetings and planning Participation with peers and building a community Personal responsibility for care Following goals for after high school Access to resources (Type, quality and timeliness-todis et al., 2011).

56 The B.R.A.I.N Program Bringing Rehabilitation and Injury Recovery to New Levels B.R.A.I.N Program 2012

57 Program Collaborations Lyn Turkstra, PhD University of Wisconsin-Madison Roger Weed, PhD Georgia State University Jason Cavin, M.A Georgia State University. Laura Jones, CRC Georgia Dept of Vocational Rehabilitation Elizabeth Poplawski, MD Children s Rehabilitation Specialists Justin Wise, PhD Ogelthorpe University Jessica Dyke, MD Emory University School of Medicine Jeanne Charles, PhD University of New England Randy Warren Sports Medicine Children s Healthcare Mimi Gold, M.ED Educator Kim Roberts, CRC Vocational Rehabilitation Counselor

58 Program Collaborators Juliet Veal, Coordinator, The ZONE Julie Hagar, Recreational Therapy Jason Amos, Speech-Language Pathologist Randy Warren, Sports Medicine Rebecca Day-Lewis, Driving Program Division of Rehabilitation Services, Susannah Kidwell, Director of Clinical Services 58

59 Special Thanks to our Sponsors Atlanta Dance Marathon

60 The B.R.A.I.N Program Bringing Rehabilitation and Injury Recovery to New Levels Julie Haarbauer-Krupa, PhD B.R.A.I.N Program Coordinator Phone: