Partnering for Successful and Healthy Transitions: Racing to Work! Kathy Blomquist, Debbie Gilmer, Theresa Glore HRTW National Resource Center APSE National Meeting Louisville, KY, July 10, 2008

Objectives of Session Experience the power of Celebratory Learning Enhance understanding of transition resources and current research Identify best practices in transition and health care transition planning Practice strategies for supporting youth with special health care needs in transition Be re-newed, re-energized, and re-vitalized from sharing a learning experience with your professional peers Have fun with us!

Agenda Welcome! Entering Charts Bingo! State of the State of the Research Kentucky’s Racing Form Racing to Work! Transition Planning Reflection and Evaluation

Breeding… Horses lend us the wings we lack. ~Author Unknown

Everyone can work! Achieving all A’s! Aspirations Access Accommodations Assistive Technology

Data: Children & Youth with Disabilities and Health Needs Nationwide 10.2 million (13.9%) <18 Title V CYSHCN 1,418,445 ( 0-18*) SSI Recipients 1,132,000 ( 0-17) Sources: NS-CSHCN 2. Title V Block Grant FY 2008, * Most State Title V CSHCN Programs end at age SSA, Children Receiving SSI, April 2008,

SSI Recipients Who Work: (SSA 2008) Youth & Young Adults 304,948 All blind & disabled SSI recipients ages ,863 (11.7 %) recipients work (b) participants: 1.2% of ,439 All blind & disabled SSI recipients ages ,238 (15.8%) recipients work (b) participants: 4.2% of Employment Among Persons With and Without Employment Disability (2006 Census) - With employment disability: Employed:16.8% - Without employment disability: Employed: 41.2%

Transition & …No Insurance 13.7 million young adults ages without health insurance 19 is critical age – Uninsured rate jumps from 12% (18 and under) to 30% (for ages 19-29) SOURCE: Commonwealth Fund 2008

NOD/Harris Survey of Americans with Disabilities (2004) VariablePeople with Disabilities People without Disabilities Not getting needed health care 18% 7% Health insurance not paying for service needed 28%7% Income less than $15,000 per year 26%9% Education: HS dropouts 21%10% Employment35 %78%

What do Young People Want? To have opportunities just like all youth - fun, jobs, friends To be included and accepted To be independent To be educated To experience health and wellness To hear applause for their performance

Reflection … What I want to remember Ways I’ll use this information

Training… No horse gets anywhere until he is harnessed. No stream or gas drives anything until it is confined. No Niagara is ever turned into light and power until it is tunneled. No life ever grows great until it is focused, dedicated, disciplined. Harry Emerson Fosdick

Health Impacts Performance & Productivity Success in the classroom, within the community, and on the job requires that young people are healthy. To stay healthy, young people need an understanding of their health and to participate in their health care decisions or identify the appropriate supports.

Partner with Youth and Families Talk about health in relation to learning and employment Promote participation in health care and decisions Include the school nurse more actively in the IEP

Partner with Health Professionals Everyone has the same goal: promoting optimal potential Think health! Transition is about community partners: Partner with primary physician, school nurse, etc.

Youth are less interested in any transition organized around medical issues and more interested in a transition to financial and social independence. Adolescent Employment Readiness Center (AERC) Research (Dr. Patience White):

Measuring what youth should know and do Health condition Providers Insurance Family and friends Independent living Postsecondary education and training Employment Recreation and leisure Other general skills

Reflection … What I want to remember Ways I will use this info

Racing Form: Kentucky Data!

HRTW-KY Survey & Followup Mail Surveys –KY Commission for CSHCN 18+ –SHC, Lexington Initial Survey: N=650 (see Blomquist, 2006, Orthopaedic Nursing) Followup Survey (see Blomquist, 2007, Orthopaedic Nursing) N=300 –85% from KY –94% white –64% female –28% independent in ADLs

HRTW-KY Survey & Followup N=300 DEMOGRAPHICS Comparison: Census, BRFSS, Childtrends Databank VariableInitial2-years later Comparison Age18-23 (21.1) (23.1) Live with parents58%43% 56% men 43% women ages Live with spouse/ significant other 22%30% 53% in mid 20s

HRTW-KY Survey & Followup (2) N=300 DEMOGRAPHICS VariableInitial2-years later Comparison Single/ never married 85%73% 77% yr olds Children17% (49% unwed) 25% (33% unwed) 48% women 32% men by mid 20s Got help with survey30%23%

HRTW-KY Survey & Followup (3) N=300 HEALTH VariableInitial2-years later Comparison Perception of health 12% Ex 32% VG 35% G 18% F 3% P 13% Ex 30% VG 31% G 21% F 4% P 20% Ex 39% VG 33% G 7% F 1% P Have doctor85%83% 73% yr olds Have been to ER in past year 37%39%25%

HRTW-KY Survey & Followup (4) N=300 INSURANCE VariableInitial2-years later Comparison Have no insurance 24%25%39% of KY yr olds Type of Insurance *41% medicaid *9% own job *27% family *10% other *42% medicaid *18% own job *19% family *13% other *9% medicaid *53% employment based Offered health insurance with work 43% 57% took 54% 73% took

HRTW-KY Survey & Followup (5) N=300 WORK AND SCHOOL VariableInitial2-years later Comparison Working 45% 21% FT 51% 26% FT By age 25, 92% men and 81% women work Receive SSI 36% *21% working *58% use computers *19% drive Completed HS or higher 66%72%86% of yr olds Idle – not working, not in school, no children 23% 29%

Issues! Planning for YSHCN becoming adults: Sending System : Preparing families, youth and professionals - envisioning adulthood Receiving System : Different expectations, programs, rules and regulations ONE Plan for Collaboration across systems in the community: health, education, work, housing, transportation, technology, play

Reflection…. What do we do to promote work for youth with special health care needs and disabilities? To promote health? To promote access to health insurance?

Starting Gate! I have seen things so beautiful, that they have brought tears to my eyes. Yet, none of them can match the gracefulness and beauty of a horse running free. Unknown

Successful health care transition! Youth are able to do independently or direct others: Access health services See the doctor alone Discuss their health conditions Communicate their health care needs Self-manage their care, and support is available

Youth are able to (con’t.) Make health care decisions ( or support is in place) Understand when their pediatric practice expects transition, and what to expect from adult health care providers Young adults Have insurance and know how to use it responsibly Have adult health care – primary, specialty, therapies, assistive technology Are prepared for and have jobs and careers

Racing to Work…Transition Planning A horse is the projection of peoples' dreams about themselves - strong, powerful, beautiful - and it has the capability of giving us escape from our mundane existence. Pam Brown

Title V Leadership Toni Wall, MPA Kathy Blomquist, RN, PhD Theresa Glore, MS Federal Policy Patti Hackett, M.Ed Interagency Partnerships Debbie Gilmer, M.Ed Medical Home & Transition Richard Antonelli, MD, MS, FAAP Patience H. White, MD, MA, FAAP Betty Presler, ARNP, PhD Family, Youth & Cultural Competence Mallory Cyr Ceci Shapland, MSN Trish Thomas HRSA/MCHB Project Officers Elizabeth McGuire/Lynda Honberg HRTW TEAM

Contact Us Kathy Blomquist: Debbie Gilmer: Theresa Glore: Healthy & Ready to Work National Resource Center