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Transitions: Growing Up Ready to Live! The Ultimate Outcome: Transition to Adulthood

Transitions: Growing Up Ready to Live! The Ultimate Outcome: Transition to Adulthood. Patti Hackett, MEd Co-Director HRTW National Resource Center TUESday , March 17, 2009.

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Transitions: Growing Up Ready to Live! The Ultimate Outcome: Transition to Adulthood

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  1. Transitions: Growing Up Ready to Live!The Ultimate Outcome: Transition to Adulthood Patti Hackett, MEd Co-Director HRTW National Resource Center TUESday, March 17, 2009

  2. “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?

  3. Growing Up Ready to LIVE! Health & Wellness + Humor Live your life the way you would have, just know you will have more equipment. Bos Children’s Hosp - brace man, 1974

  4. Putting Policy Into Practice Action  Policy = Change over time Reduction of Barriers, Increase ease of access Action  Practice = NOW KSAs Knowledge, Skills & Abilities - Tools to increase quality - Tools to Reduce stress - Tools to Expedite determination for services Keep in Mind: Two Different Issues

  5. CYSHCN

  6. HRSA/MCHB Block Grant: NPM #6 Transition to Adulthood Youth with special health care needs will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence. (2002) SOURCE: BLOCK GRANT GUIDANCE New Performance Measures See p.43 ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf

  7. MCHB CORE National Performance Measures Transition & ……… 1. Family 2. Screening 3. Medical Home 4. Health Insurance 5. Community 6. Transition • Youth Involvement • Secondary Disabilities • Peds to Adult • Extend Dependent Coverage • Entitlement to Eligibility • 6. Inclusion in Community

  8. D70 grants (New Freedom Initiative Integrated Services Grants): These grants mandate focus on several of the 6NPMs. 2005-2008: AZ, CA, FL, HI, IA, MA, MN, OK, OR, SC, UT, WI 2006-2009: Navaho Nation in AZ, ME, NH, NY, NC, RI 2008-2011: CT, CO, DC, MD, MI, MO, ND, NE, NV, PA, VT, WV

  9. 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 Pediatrics 2002:110 (suppl) 1304-1306 A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs American Academy of Pediatrics , American Academy of Family Physicians, American College of Physicians - American Society of Internal Medicine

  10. What does the Data tell us? HRTW Natl Center 2005-2007 Natl CSHCN 2005-06

  11. NS-CSHCN 2005 Section 6: Family Centered Care - Transition Qs

  12. NS-CSHCN 2005 Section 6: Family Centered Care - Transition Qs

  13. Outcome #6: Youth with special health care needs who receive the services necessary to make appropriate transitions to adult health care, work and independence -- CSHCN ages 12-17 only (derived) National: 41.2%

  14. Question: (C6Q0A_B) Have child's doctors and other health care providers) talked with you about having [CHILD'S NAME] eventually see doctors or other health care providers who treat adults?

  15. 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

  16. 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 and the PACER Center, 1995 *SOURCE: National Youth Leadership Network Survey-2001 300 youth leaders disabilities

  17. Question:  (C6Q0A_E) Has anyone discussed with you how to obtain or keep some type of health insurance coverage as [CHILD'S NAME] becomes an adult?

  18. Extended Coverage – Family Plan 1. Adult Disabled Dependent Care(37 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 ND Cent. Code Section 26.1-36-09.1 - full-time student <26 yo - disabled student

  19. Extended Coverage – Family Plan 1. Adult Disabled Dependent Care(37 states) ND Cent. Code Section 26.1-36-09.1 - Disabled - incapable of self-sustaining employment - mental retardation or physical handicap and chiefly dependent upon the employee for support and maintenance - provided proof of incapacity and dependency 31 days of the child's attainment of limiting age

  20. Extended Coverage – Family Plan 2. All Young Adults, childless continued on Family Plan increasing age limit to 25-30 CO, CT, DE, ID, FL, IN, IL, ME, MD, MA, MI, MT, NH, NJ, NM, OR, PA, RI, SD, TX, VT, VA, WA, WV

  21. Question: (C6Q08) How often do [CHILD'S NAME]'s doctors or other health care providers encourage [him/her] to take responsibility for [his/her] health care needs?

  22. Evaluation

  23. Moving to Community-Based Systems of Care: Issues for States • Planning for cohorts of 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

  24. Measures Medical Home with Transitions & … - Screening Prevention Secondary Disabilities - Family/Youth Activated Patient - Health Insurance Maintaining Coverage - Community Services Capacity

  25. Consensus Statement: Health Care TransitionCritical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 1.Identify primary care provider 2. Identify core knowledge and skills 3. Maintain an up-to-date medical summary that is portable and accessible 4. Create a written health care transition plan by age 14: what services, who provides, how financed 5. Apply preventive screening guidelines 6. Ensure affordable, continuous health insurance coverage SOURCE: Pediatrics 2002:110 (suppl) 1304-1306 Ped

  26. NCQA -Physician Practice Connections practical tool that assesses an ambulatory practice's use of the Chronic Care Model, and work with GE in the early stages of the Bridges to Excellence incentive program using the Six Sigma approach to identify errors in office practice. • Office Practice Workflow (MCHB) • Patient Access (MCHB, HRTW) • Patient Education (MCHB, HRTW) • Office Electronic Data/systems • Office HER • Office E-Registry • Office E-Prescribing

  27. National Quality Forum Transitions Measurement and Evaluationhospital transitions Q> Could this work for primary care/ sub specialist and ped to adult transitions? - Patient level - Process of Care - Cost and resource use across episode Next slides red = fit with HRTW and Consensus Statement

  28. NOF Transitions Measurement and Evaluation Patient Level • Morbidity and mortality (consensus statement: use of GAPs, etc) • Functional status • Health related quality of life • Patient experience in care (HRTW screening tools help youth/parents know what to expect)

  29. NOF Transitions Measurement and Evaluation Process of Care • Technical (IT-electronic med records, etc) • Care coordIdentify care coord • Decision support medical record, skill set, transition plan Additional Professional level eval from HRTW: Processes needed to make the transition process successful in practice -HRTW forms and screening tools

  30. NOF Transitions Measurement and Evaluation Cost and resource use across episode: • Total cost of care • Opportunity costs to patients continuous source of health insurance

  31. Final Thoughts

  32. Patti Hackett pattihackett@hrtw.org pattihackett@yahoo.com

  33. www.hrtw.org

  34. http://www.championsinc.org

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