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Session Information

Session Information Session Title : Controversies and Challenges for Children and Youth with Disabilities Session Number : H1017 Faculty Name : Patti Hackett, MEd Faculty Institution : HRTW National Resource Center Faculty Name : Harry L. Gewanter, MD, FAAP, FACR

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Session Information

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  1. Session Information Session Title: Controversies and Challenges for Children and Youth with Disabilities Session Number: H1017 Faculty Name: Patti Hackett, MEd Faculty Institution: HRTW National Resource Center Faculty Name: Harry L. Gewanter, MD, FAAP, FACR Faculty Institution: Pediatric & Adolescent Health Partners Medical Home Plus, Inc Midlothian, VA

  2. Faculty Disclosure Information Patti Hackett, MEdIn the past 12 months, I have no relevant financial relationships with the manufacturer(s) of any commercial product(s) and/or provider(s) of commercial services discussed in this CME activity.I do not intend to discuss an unapproved/investigative use of a commercial product/device in my presentation.

  3. Faculty Disclosure Information Harry L. Gewanter, MD, FAAP, FACRIn the past 12 months, I have no relevant financial relationships with the manufacturer(s) of any commercial product(s) and/or provider(s) of commercial services discussed in this CME activity.I do not intend to discuss an unapproved/investigative use of a commercial product/device in my presentation.

  4. “Childrenand youth with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” Source: McPherson, M., et al. (1998). A New Definition of Children with Special Health Care Needs Pediatrics. 102(1);137-139. http://www.pediatrics.org/search.dtl Who Are CYSHCN?

  5. Nearly 40% of youth with SHCN cannot identify a primary care physician 20% consider their specialist to be their ‘regular’ physician Primary health concerns are not being met Fewer work opportunities, lower high school grad rates and increased drop out from college YSHCN are 3 X more likely to live on income < $15,000 SOURCES: CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002 Outcome Realities

  6. Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals. What is Health Care Transition?

  7. Components of a Successful Transition • Self-Determination • Person Centered Planning • Prep for Adult health care • Work /Independence • Inclusion in community life • Starting Early

  8. What is “Early”? • Data from studies in Europe and the US • suggest ages 11-13 • Youth most interested in involvement with future career like their peer group without disabilities • If intervene with transition planning, able to keep them on developmental milestones compared to those starting later • Have least differences in standardized QoL and life skills measures • Youth > 14 years had bigger differences than peers w/o disabilities and interventions show less improvement

  9. www.hrtw.org

  10. Health Impacts ALLAspects of Life • 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.

  11. The Ultimate Outcome: Transition to Adulthood • Health Care Transition Requires • Time & Skills • for children, youth, families and • their Doctors too!

  12. What is the point?Why bother? • “The physician’s prime responsibility is the medical management of the young person’s disease, but the outcome of this medical intervention is irrelevant unless the young person acquires the required skills to manage the disease and his/her life.” • SOURCE: Ansell BM & Chamberlain MA. • Clinical Rheum. 1998; 12:363-374

  13. Youth With Disabilities Stated Needs for Success in Adulthood • PRIORITIES: • Career development(develop skills for a job and how to find out about jobs they would enjoy) • Independent living skills • Finding quality medical care(paying for it; USA) • Legal rights • Protect themselves from crime(USA) • Obtain financing for school(USA) SOURCE: Point of Departure, a PACER Center publication Fall, 1996

  14. A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs AAP, AAFP, ACP-ASIM • Identify primary care provider • Identify core knowledge and skills • Knowledge of condition, prioritize health issues • Maintain an up-to-date medical summary that is portable and accessible • Apply preventive screening guidelines • Ensure affordable, continuous health insurance coverage • SOURCE: Pediatrics 2002:110 (suppl) 1304-1306

  15. A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs AAP, AAFP, ACP-ASIM • Identify primary care provider • Identify core knowledge and skills • Knowledge of condition, prioritize health issues • Maintain an up-to-date medical summary that is portable and accessible • Apply preventive screening guidelines • Ensure affordable, continuous health insurance coverage • SOURCE: Pediatrics 2002:110 (suppl) 1304-1306

  16. Medical Home includes: • A partnership - family and primary care doctor. • A relationship - mutual trust and respect. • Connections- supports - services for child / family. • Respect for the family’s cultural and religious beliefs. • After hours & weekend access to medical consultation • Families feel supported in caring for their child • Primary doctor workswith team/other care providers

  17. A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs AAP, AAFP, ACP-ASIM • Identify primary care provider • Identify core knowledge and skills • Knowledge of condition, prioritize health issues • Maintain an up-to-date medical summary that is portable and accessible • Apply preventive screening guidelines • Ensure affordable, continuous health insurance coverage • SOURCE: Pediatrics 2002:110 (suppl) 1304-1306

  18. HRTW Surveys: Results 2007 • About Those Who Responded • - 52 physicians / 26 states • - Most involved with Medical Home projects • - 47 pediatricians, 4 Med-Peds, 1 Family • Consensus Statement- Knowledge • 50% were familiar • 06% unsure • 42% not

  19. Results: Core Knowledge & Skills • 36%have forms to support transition • (82% want help) • 39%provide educational materialsregarding transition • (48% want help)

  20. Results: Core Knowledge & Skills • 58%help youth/families plan for emergencies • (31% want help) • 68%assist with accommodations school/studying or work • (21% want help) • 35%Make transportable medical record for some patients • (43% want help)

  21. Results: Core Knowledge & Skills • 63%promote independence in health condition management • (25% want help) • When youth turn 18, is there a written policy to discuss? 77% no • Do you seek verbal assent? 81% • Do you seek written assent? 23% • 50%refer to skill-building experiences • (35% want help)

  22. Results: Core Knowledge & Skills • 33%Create individualized health transition plan • for at least some patients • (39% want help) • 65%Screen to identify YSHCN who need transition services • (29% want help)

  23. Overall practice assessment • Rate your practice with regards to transition processes in general: • - Not interested 02% • - Do not have yet, interested 29% • - Beginning stages 25% • - Working on policy/processes 19% • - Have policy and processes integrated 13%

  24. Conclusions • Respondents are reluctant to transition their youth with SHCN to adult practices • Respondents are well versed in coordinated care, but are reluctant to adopt processes that give youth with SHCN the tools/skills to negotiate adult health care practices

  25. Prepare for the Realities of Health Care Services • Difference in System Practices • Pediatric Services: Family Driven • Adult Services: Consumer Driven • The youth and family finds themselves • between two medical worlds ……. • that often do not communicate

  26. Provider Parent Young Person Major responsibility Provides care Receives care Support to parent and child Manages Participates Consultant Supervisor Manager Resource Consultant Supervisor Preparing for New Roles: Shared Decision Making

  27. Levels of Support Family Role Young Person Independent Coach Can do or can direct others Interdependent Consultant Coordinates Can do or can direct others May need support in some areas Dependent Manages Coordinates (expand circle of support) Needs support full-time in all areas Prepare for NewLevels of Support

  28. A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs AAP, AAFP, ACP-ASIM • Identify primary care provider • Identify core knowledge and skills • Knowledge of condition, prioritize health issues • Maintain an up-to-date medical summary that is portable and accessible • Apply preventive screening guidelines • Ensure affordable, continuous health insurance coverage • SOURCE: Pediatrics 2002:110 (suppl) 1304-1306

  29. Utilizing the IEP to Increase Knowledge and Competence • Goal: • I will learn about my seizure disorder and my health needs to live more safely in the community. • Objective: • I will write a report for social studies on seizure disorders. • I will learn three side effects of my medication

  30. Utilizing the IEP to Increase Knowledge and Competence • Objective: • I will develop an emergency plan with my physician and present it to my case manager. • I will identify and interview two adult physicians and choose a new adult doctor by June, 2007.

  31. Know Your Health & Wellness Baseline • How does your body feel on a good day? • What is your typical • - body temperature • - respiration count • - elimination habits? • - quality of skin (front and back)

  32. Youth are Talking: Are We listening? • Survey - 1300 YOUTH with SHCN / disabilities • Main concerns for health: • What to do in an emergency • Learning to stay healthy* • How to get health insurance* • What could happen if condition gets worse. • SOURCE: Joint survey - Minnesota Title V CSHCN Program & PACER Center, 1995 • *SOURCE: National Youth Leadership Network Survey-2001 • 300 youth leaders disabilities

  33. A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs AAP, AAFP, ACP-ASIM • Identify primary care provider • Identify core knowledge and skills • Knowledge of condition, prioritize health issues • Maintain an up-to-date medical summary that is portable and accessible • Apply preventive screening guidelines • Ensure affordable, continuous health insurance coverage • SOURCE: Pediatrics 2002:110 (suppl) 1304-1306

  34. Portable Medical SummaryTo be carried in your wallet • GOOD DAYS • CHEAT SHEET: Use as a reference tool • Accurate medical history • Correct contact numbers • Document disability • BAD DAYS/HEALTH CRISIS • Expedite EMS transport & ED/Hospital Care • Paper talks when you cannot

  35. Health Care Transition Plans • YOUTH INVOLVEMENT (Skills, practice & time) • How to involve the young person • in introducing, creating and participating in that plan • UPDATE PERIODICALL • Partnership – youth, family and provider • Plan assessed periodically and changes are made • when needed (interests, medical, etc)

  36. A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs AAP, AAFP, ACP-ASIM • Identify primary care provider • Identify core knowledge and skills • Knowledge of condition, prioritize health issues • Maintain an up-to-date medical summary that is portable and accessible • Apply preventive screening guidelines • Ensure affordable, continuous health insurance coverage • SOURCE: Pediatrics 2002:110 (suppl) 1304-1306

  37. Screening SECONDARY DISABILITIES • -Prevention/Monitor • - Mental Health • - High Risk Behaviors AGING & DETERIORATION • - Info long-term effects (wear & tear; Rx, health cx) • - New disability issues & adjustments

  38. Screen for All Health Needs • Hygiene (look good, feel good, smell good) • Nutrition(Stamina, Bowel Management, obesity, etc.) • Exercise(fitness and stamina) • Sexuality Issues(masturbation, STIs, GLBT) • OB-GYN(Routine care, Birth Control, Rape) • Mental Health(genetic, situational) • Routine(Immunizations, Blood-work, Vision, etc.)

  39. Screen for Life Areas • How does health affect: • Employment • Leisure, Recreation • Community: transportation, housing, activities • Higher Education or Training

  40. A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs AAP, AAFP, ACP-ASIM • Identify primary care provider • Identify core knowledge and skills • Knowledge of condition, prioritize health issues • Maintain an up-to-date medical summary that is portable and accessible • Apply preventive screening guidelines • Ensure affordable, continuous health insurance coverage • SOURCE: Pediatrics 2002:110 (suppl) 1304-1306

  41. TICKET TO WORK http://www.socialsecurity.gov/work/aboutticket.html • Employment Network (EN) of their choice to obtain employment services, vocational rehabilitation services, or other support services to help the beneficiary find and maintain employment MEDICARE (SSDI) • Premium-free coverage for 4.5 years beyond the current limit for disability beneficiaries who work. Medicaid (SSI) • Most States have the option of providing Medicaid coverage to more people between the ages of 16-64 with disabilities who work.

  42. Disability Program Navigator Functions - One-Stop Career Centers • outreach and provide direct services to people with disabilities (PWD) • prepare for, find, or retain employment by collaborating with mandated and non-mandated WIA partners and agencies. • coordinator on SSA work incentives:Ticket to Work, linkages to SSA field offices, SSA Benefits Planning, Assistance and Outreach (BPAO) counselors, and Employment Networks. • Assist beneficiaries in understanding the effects of earnings on SSA and other program benefits.

  43. Extended Coverage – Family Plan 1. Adult Disabled Dependent Care(40 states) Incapable of self-sustaining employment by reason of mental or physical handicap, as certified by the child's physician on a form provided by the insurer, hospital or medical service corporation or health care center 2. All Youngs Adults, childless continued on Family Plan increasing age limit to 25-30 CO, CT, DE, FL, ID, IN, IL, ME, MD, MA, MI, MT, NH, NJ, NM, OR, PA, RI, SD, TX, VT, VA, WA, WV

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