TRANSITION Journey of the chronically i ll i nto a dulthood

1. TRANSITION Journey of the chronically ill into adulthood Engaging the whole person. Baylor College of Medicine Transition Medicine Clinic Dr. Cynthia Peacock, MDMedical Director 713-798-0216

2. Our team • Dr. Cynthia Peacock, MD Medical Director • Dr. Tamiko Kido, MD • Lisa Osten, LCSW Program Director • Angela Caughlin, LCSW • Leanna Byrd, RN • Allison Carter, CMA

3. What is healthcare transition? The purposeful, planned movement of adolescents from pediatric to adult healthcare. Especially challenging for those with special needs.

4. Why do we need a transition clinic • “We used to take turns having John give us rides in his wheel barrel and if we wanted to ride our bikes down to the corner store, the parents in the neighborhood would only allow this if John rode with us. I guess the parents thought having an adult figure with us would protect us. Thinking back on it, I think we were John’s protector. We never allowed anyone to tease him or call him names. Of course as a kid you would always protect your friend, and he was our friend.” • “She reminded me of a promise that I made to her as a child. The promise was that I would grow up and get a job taking care of people like Johnny and John. She asked me if I would be able to keep that promise.” • ~ Cynthia Peacock, M.D.

5. Transition is a process, not an event • 500,000 U.S. children with special health care needs turn 18 every year • 12 million U.S. children and youth have significant chronic health care issues • Most children with chronic disease or disability now survive into adulthood • Health care transition is: • Purposeful, planned movement of adolescents from pediatric to adult health care • Especially challenging for those with special health care needs

6. What is the goal of the Transition Medicine Clinic? Connect to adult services, no interruption of care Identify changes in services at 18 and 21 Medical and Social Work services Provide a medical home Case management & care coordination Teach health care providers

7. Barriers to transition • Insurance: pediatric traditional Medicaid to adult HMO Medicaid • Adult Medicaid limits on what is covered/quantity/in network & cap • Accessibility to waiver programs • Financial disincentives to care for population • Deficits in education/experience for adult healthcare providers • Limited outcome literature on transition health care/no information on best practices • Workforce shortage

8. Getting ready for transition? Important things to know

9. Applying for Social Security disability at 18? • Disability determination criteria changes at 18 • Parent income excluded at age 18 • Work ability at 18? • Development under 18? • SSA.gov Blue Book provides criteria • PASS program @ DARS/some income disregarded • SSA 1-800-772-1213

10. Private insurance Keeping it past the normal aging out point? • Contact human resources • Complete a Disabled Dependent form for an adult child • Before age 26 • Not portable • Other insurance options at www.healthcare.gov

11. Case manager helping to access services? • Finding an in-network PCP • Medication assistance • Out of network authorizations • Medical equipment approvals • Attendant and nursing care

12. Medicaid Waiver Programs Get on the waiting list – it’s never too early! Waivers: • HCS • Call local MHMRA • CLASS • MDCP • CBA • Call 1.877.438.5658 DADS • CBA Star Plus Waiver • Call Medicaid HMO • Call waiver list every 6 months • Benefit: more dollars for services not covered by Medicaid after 21 years of age

13. What about patients with nursing care? • Contact Advocacy, Inc. by age 20 to maximize adult nursing hour benefit 512.454.4816 • Waiver programs or • Enroll in an HMO Medicaid program to access adult nursing hours through CBA Star Plus waiver

14. DARS – what do they offer? • Vocational rehab • Comprehensive rehab (spinal cord & brain injuries) • Independent living services and centers • DARS 1.800.628.5115

15. Guardianship information • Brazos Bend Guardianship Services281.207.2320 • Guardianship packets through ARC of Texas • Harris County guardianship program713.363.2300 • Ask about guardianship limitations with treatment options

16. Dental coverage For medically complex over age 21 • Medicaid dental coverage reduced at age 21 • Options • UT Dental Clinic for medically complex patients713.500.4296 • Houston Children’s Dental Center - special needs, all ages 713.481.9500 • County System, FQHC’s and charity clinics

17. Mental health benefits • Free counseling sessions through Medicaid • Contact any mental health provider who takes Medicaid for payment

18. Insurance coverage • Medicaid and supplemental Security income is lost when • Income is increased by retirement, survivor or disability benefits • No Medicare for 2 years leaves coverage gap • Options • Disabled Adult Child Disregard • Pickle Disregard • Plan to Achieve Self-Support (PASS) • PICP: Pre-Existing Condition Insurance Plan1.800.220.7898

19. Who do we see at the Transition medicine Clinic?

20. Our patients • 326 current, active patients • Ethnicity • Caucasian, Black, Hispanic, Asian • Ages • 17 – 58 • Most referrals are ages 17-27 • Diagnosis • IDCP, Down Syndrome, Spina Bifida, Autism, neuromuscular disorders, genetic disorders

21. What we have learned • Transition is a process, not an event • Lack of community healthcare providers who will accept this group of patients • Big gaps in school transition curriculums • Most patients have not participated in a transition curriculum • Limited opportunities for employment, supportive employment adult day programs

22. And most important

23. Our patients have AMAZING stories • “The word “inspire” when dissected to its Latin root, means “to breathe life into or upon.” As my younger brother Benjamin struggles for every breath of his life, he miraculously produces a heartening influence on every individual and situation around him. • Ben battles daily to live, but does it with a contagious optimism. As the older brother to such a severely handicapped person, I have experienced an entire spectrum of emotions concerning Ben – ranging from fiercely protective to unabashedly frightened and sad for him. • While my emotions are often fluid and sometimes unsettled, Benjamin’s attitude and smile are unflappable. It is often at his most physically debilitated and challenged that Ben’s love, courage and uplifting spirit manifest his divine power.” • ~ Jeb Ligums

24. Profiles in courage • Our patients and their families are BRAVE and RESILIENT! • Welearn from them everyday • We must do more to support this population in our community!

25. Everybody has a story, this one is mine “Looking back on everything, I realize that I am truly blessed and I am truly loved. My life is great now and its only getting better. While I was writing this and thinking back on everything, I now know my purpose in life, and I’ve learned that every surgery, and there were twenty, every trip to the hospital and every hard hit I endured made me the person I am today. If it wasn’t for this life changing, I wouldn’t have met all the incredible people that are in my life today. I don’t sit back and let life happen, I make life happen. I’m in charge of my own destiny and I choose what I do with my life. My name is Rosalie Salas, and if you take just one thing from this, I want you to take this: never hide who you are or what you’ve been through. Be proud of who you are and what you’ve endured.” Rosalie Salas

27. Pro Bono presentation design and execution by Unbridled Communications.