TRANSITION CARE:COLLABORATIVE STRATEGIES TOADDRESS THE MEDICAL-LEGAL NEEDS OF EMERGING ADULTS.                 On Twitter:...
AGENDA   Introduction to Transition (Emerging Adulthood)   Common Legal Issues   Medical Transition – common concerns ...
TRANSITION CARE   Definition:       The movement from adolescence to adulthood         Home         Health care       ...
WHY FOCUS ON TRANSITION?   This is a time where long-term care needs can be    managed   Changes in legal status (age) e...
THE SCOPE OF THE PROBLEM:   500,000 youth in the US with special health-care    needs graduate to adulthood yearly     Y...
COMMON LEGAL ISSUES INTRANSITION   Income supports (SSI, SSDI, TANF)     Tied to health insurance options     Work ince...
FEDERAL TRANSITION TIMELINE                                               •   Age out of state children’s Medicaid        ...
IL TRANSITION TIMELINE    IL law requires             •    Age out of IL All Kids (Except DCFS    Transition Plan with    ...
INCOME SUPPORTS   Supplemental Security Income (SSI)       Strict income and resource limits           $1010 income/mon...
SSI & AGE 18 REDETERMINATION   Before age 18, SSA looks at child’s ability to function in    school   At age 18, recipie...
DEFINING DISABILITYChild Disability Standard                  Adult Disability StandardINCOME: Under 18 years old, parents...
HOW WILL REDETERMINATIONHAPPEN?   If receiving childhood SSI: SSA will automatically    redetermine after 18th birthday. ...
AID PENDING APPEAL   Continues SSI/SSDI check during appeal    if ultimately denied for adult SSI, will have an    overp...
DISABILITY REEVALUATION    Once determined to be disabled by the adult     standard:     SSA may review eligibility ever...
HEALTH INSURANCE   Adult Medicaid (AABD)     Requirements differ by state     In many states, need to be SSI/SSDI eligi...
HEALTH INSURANCE (cont’d)Private Insurance         Group plans             Parent’s insurance (until age 26)           ...
CAPACITY   Adult Guardianship – When the transition aged    youth is unable to make decisions about their affairs for    ...
EDUCATION   Transition Planning (IDEA 2004)  Federal     First IEP after age 16, updated annually     Appropriate meas...
VOCATIONAL REHABILITATION   Transition/Vocational Programs     Pre-HS Graduation  IEP Transition Plan     Post-Graduat...
INCOME & ASSETS   Limits for SSI     Substantial Gainful Activity (SGA) & Asset limits     Exclusions: Special Needs Tr...
SSI WORK INCENTIVESo   Earned Income Exclusiono   Student Earned Income Exclusion    o   SSA will exclude up to $1,700 of ...
CALCULATING SSI INCOME   SSI Income Limit: $1010 for 2012                       BUT   SSI and earnings are calculated wi...
SSI EARNED INCOME CALCULATION    Bob is working and has gross earnings of $900    per month   $900 - $85 = $815   $815 /...
SSDI WORK INCENTIVES Trial   Work Period (TWP) = 9 months   Anmonth when earning at least $720 (for 2012)   Non-consecu...
IN-HOME CARE SUPPORT   Types of services     Personal  attendant or Nursing hours     Technological supports (communica...
HEALTH CARE REFORMFOR TRANSITION AGED YOUTH   Now effective (Federal Reform):     Children can stay on parents insurance...
MEDICAL TRANSITION   The purposeful, planned movement of adolescents    and young adults with a chronic physical and    m...
BARRIERS TO SUCCESSFUL MEDICALTRANSITION           Internist feel      Medical competency                               ...
SO WHAT CAN WE DO ABOUT IT?                         Patient and family educationSuccessful transition         Patient auto...
BUILDING AUTONOMYAssessment of patient’s ability for self  care/management- Medications:    -   knows them, gives own meds...
TRANSITION CHECKLISTS                 http://www.health.nsw.gov.au/resources/                 Accessed 5/25/2011.
BUILDING SKILLS (IL)   RIC Life Center: www.lifecenter.ric.org   Illinois Centers for Independent Living: List of    cen...
PORTABLE MEDICAL DOCUMENTReports Common to Most Health Records: Identification Sheet –name, address, telephone number,  i...
TRANSITION PORTABLE MEDICALSUMMARY
HDA MEDICAL-LEGAL PARTNERSHIPSON TRANSITION Children’s   Memorial Hospital   Transition team (one social worker, one phy...
UCMC STEERING COMMITTEEGOALS   Identify Youth and Young Adults with Special    Health Care Needs (YSHCN) in our community...
GOALS (CONTINUED)   Create a centralized transition care website containing    educational materials and a toolkit of res...
TRANSITION ACTIVITIES TO DATE   Comer Classic Grant funding obtained by two University of    Chicago Med-Peds residents t...
RESIDENT KNOWLEDGE, ATTITUDES ANDPRACTICES REGARDING TRANSITION CARE:AMY JOHNSON LO, MD AND JENNIFERMCDONNELL, MD   To de...
METHODS Surveys        distributed to IM, pediatric and combined IM/pediatric residents   total   number of surveys dist...
Resident DemographicsResponse Rate (n = 75)                      42.8%Male                                        35%Femal...
RESIDENT FAMILIARITY WITH     TRANSITION CARE      1%                             Figure 1. IM,                           ...
FAMILIARITY WITH TRANSITIONCARE BY INTENDED CAREER PATH
RESIDENTS’ PERCEIVED BARRIERS TOTRANSITION CARE AT UCMC
TRANSITION CARE IS AN IMPORTANT PARTOF MEDICAL EDUCATION
RETROSPECTIVE TRANSITIONSTUDY   IRB submitted   To describe the frequency of outcomes of transition to    adult care amo...
RETROSPECTIVE TRANSITIONSTUDY   Group 1: Patients ages 19 to 26 with a current or    previous diagnosis of JIA or SLE, wh...
RETROSPECTIVE TRANSITIONSTUDY: METHODS Telephone   Surveys Chart   Audits Autonomy    Checklist Completion
OTHER STUDIES PLANNED   Patients 13 -28 yo with DM, JIA, SLE:    Prospective study regarding transition outcomes   Retro...
TRANSITION CARE DAY   Midwest Region National Med-Peds Residents’    Association Meeting     “Transitions in Care-Transi...
AGENDA   A,B,C’s of Transition Care   Transition Care Models   Transition Patient Presentations   Break-Out Sessions f...
CASE STUDYFACTS      19 year old, female  6 months past turning 19           Medical History: ulcerative colitis & seizur...
OTHER RESOURCESChildren with Speical Health Care Needs In Illinois the Division of   Illinois network of centers for indep...
FROM DIRECT CASE REFERRALS TOSTATEWIDE POLICY ADVOCACYRecent legislative initiatives on behalf of childrenwith special nee...
HOME HOSPITAL INSTRUCTION- BACKGROUND The Illinois School Code requires school districts to provide Home/Hospital Instruc...
HOME HOSPITAL INSTRUCTIONCHANGES – HB 1706   HB 1706 introduced 3 important improvements to    HHI:     1.      “Ongoing ...
SPECIAL EDUCATION CLASSROOMACCESS: BACKGROUND   Before the amendment parents and their experts    were not guaranteed acc...
SPECIAL EDUCATIONPARENT/EXPERT CLASSROOMACCESS LAW   Gives parents or a parent’s private evaluator/expert    reasonable a...
CONTACT             Health & Disability Advocates              http://www.hdadvocates.org                  Twitter: @hdadv...
LITERATURE CITED•   American Academy of Pediatrics, Committee on Children with Disabilities and Committee on Adolescence. ...
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2012 Medical-Legal Partnership Summit - Transition Youth

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Overview of Medical and Legal barriers faced by Youth with Chronic Health Needs and Potential Interventions. Presented at the 2012 MLP National Summit in San Antonio, Texas.

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  • Trends in number of patients with CF, 1986–2008. (Reproduced with permission from Cystic Fibrosis Foundation. Center Directors' Educational Slides. Bethesda, MD: Cystic Fibrosis Foundation; 2009) ‏
  • 12yo: Create a special needs trust 14yo: Transition planning within IEP 16yo: Open a case at IDHS division of rehab services- vocational training/employment By 17 years, 11 months (30 days before the 18th birthday) Apply for SSI (if applying for the first time) Apply for SSI redetermination if you have received SSI as a child Apply for Medical Benefits (Medicaid) health insurance Before 21yo, obtain services from DSCC
  • 12yo: Create a special needs trust 14yo: Transition planning within IEP 16yo: Open a case at IDHS division of rehab services- vocational training/employment By 17 years, 11 months (30 days before the 18th birthday) Apply for SSI (if applying for the first time) Apply for SSI redetermination if you have received SSI as a child Apply for Medical Benefits (Medicaid) health insurance Before 21yo, obtain services from DSCC
  • Can reduce income contributing to SGA if: Impairment-related work expenses, or The work is “subsidized” (i.e. employee is being paid more than the work is worth)
  • These are all found in the Illinois School Code with the exception of the item 4 above. I’ve provided you with a handout that summarizes most of the amendments I’m talking about.
  • Benefits of HHI: HHI ensures students receive instruction during their time away from school. This helps students maintain academic performance and standing. Approximately 550 students with disabilities will receive HHI Prior statutory language: A child qualifies for home or hospital instruction if it is anticipated that, due to a medical condition, the child will be unable to attend school, and instead must be instructed at home or in the hospital, for a period of 2 or more consecutive weeks, or on an ongoing intermittent basis
  • HHI Change 1 “Intermittent Basis”: The Problem Some school districts had refused to provide HHI for intermittent absences despite School and Administrative Codes’ explicit mandate requiring HHI for ongoing intermittent absences Where districts recognized ongoing intermittent absences, those districts’ policies were not consistent. The Solution: define “ongoing intermittent basis” to mean missing at least 2 consecutive days multiple times per year such that at least 10 days are missed. HHI Change 2, “Service within 5 school days after doctor’s statement”: The Problem: Although the Illinois Administrative Code has always required HHI services to begin as soon as possible, some districts’ policies allowed 5, 10, or 15 days before beginning services. Others would provide no timeframe for initiation of services. The Solution HHI must begin no later than 5 school days after the school receives the doctor’s statement Home or hospital instruction may commence upon receipt of a written physician’s statement in accordance with this Section, but instruction shall commence not later than 5 school days after the school district receives the physician’s statement. HHI Change 3 “Include Special Education and Related Services”: The Problem: When a child receives HHI, a few school districts across the state provided the necessary related services as stipulated by the student’s IEP or 504 Plan, although related service provision is mandated by IDEA, the Illinois School Code and the Illinois Admin. Code The Solution: Special education and related services required by a student’s IEP or accommodations required by a student’s 504 plan will now be required to be implemented as part of the HHI unless the IEP/504 plan team determines that modifications are necessary due to the child’s condition.
  • New section of the school code.
  • . The visitor and the school district shall arrange the visit or visits at times that are mutually agreeable.
  • 2012 Medical-Legal Partnership Summit - Transition Youth

    1. 1. TRANSITION CARE:COLLABORATIVE STRATEGIES TOADDRESS THE MEDICAL-LEGAL NEEDS OF EMERGING ADULTS. On Twitter: @patelpurvip @hdadvocatesPurvi Patel, J.D/MPH., Amy Zimmerman, J.D. Health &Disability AdvocatesRita Rossi-Foulkes, M.D., Chair University ofChicago Transition Care Steering Committee
    2. 2. AGENDA Introduction to Transition (Emerging Adulthood) Common Legal Issues Medical Transition – common concerns Example: Transition at University of Chicago Hospitals Policy Advocacy based on the MLP Model
    3. 3. TRANSITION CARE Definition:  The movement from adolescence to adulthood  Home  Health care  Education  Community So… how does this change if you have a patient with:  Developmental disability?  Intellectual disability?  Chronic medical conditions?
    4. 4. WHY FOCUS ON TRANSITION? This is a time where long-term care needs can be managed Changes in legal status (age) effect a myriad of benefits Increase in numbers of transition youth  Medical innovations & improvements  Longer life expectancy  Expectations of future productivity  Callahan ST, Feinstein R, and Keenan P. Transition from pediatric to adult-oriented health care: a challenge for patients with chronic disease. Current Opinions in Pediatrics. 2001, 13:310-316.  Klass P. A Graduation that may carry unnecessary risk. The New York Times. June 13, 2011: D5.
    5. 5. THE SCOPE OF THE PROBLEM: 500,000 youth in the US with special health-care needs graduate to adulthood yearly  YSHCN account for 13% of all youth but 70% of medical expenditures Trends in number of patients with CF, 1986– 2008. Tuchman L K et al. Cystic Fibrosis and transition to adult medical care. Pediatrics. 2010;125:566-573
    6. 6. COMMON LEGAL ISSUES INTRANSITION Income supports (SSI, SSDI, TANF)  Tied to health insurance options  Work incentives Insurance (public and private) Adult Capacity  Powers of Attorney  Adult Guardianship (and alternatives) Education  Special education services in high school  Vocation  Higher education (insurance, accomodations) Income & Assets  Wills  Special Needs Trusts In-home care & supports
    7. 7. FEDERAL TRANSITION TIMELINE • Age out of state children’s Medicaid IDEA law requires (Except DCFS beneficiaries) Transition Plan with • apply for adult health insurance measurable post- (Adult Medicaid, state buy-in, private insurance) secondary goals added into IEPConsiderSpecial Begin exploring adultNeeds Trust healthcare (PCPs & specialists) 13 14 15 16 17 18 19 20 21 22 23 24 25 26 Vocational Training If parents have private • insurance, can stay on Apply for Adult SSI (either first time or redetermination) their policy until age 26 (Accountable Care Act) • Can postpone high school graduation to use additional transition services • Request adult guardianship (if necessary) and/or complete delegation of educational decision making power • Implement Power of Attorney, planning for wills & trusts
    8. 8. IL TRANSITION TIMELINE IL law requires • Age out of IL All Kids (Except DCFS Transition Plan with beneficiaries) measurable post- • apply for adult health insurance secondary goals (Adult Medicaid, IPXP, ICHIP, private insurance) added into IEP • End of services from DSCC • DCFS beneficiaries age outConsider Begin exploring adult of childhood MedicaidSpecial healthcare (PCPs &Needs Trust Graduate from high school (if specialists) using extended transition services) 13 14 15 16 17 18 19 20 21 22 23 24 25 26 Consult IDHS Division ofMust begin high school Rehabilitation services(elementary school can keep If parents have privatestudent an extra year past insurance, can stay onage 14 If requested) • Apply for Adult SSI (either first time or their policy until age 26 redetermination) • Can postpone high school graduation to use additional transition services • Request adult guardianship (if necessary) and/or complete delegation of educational decision making power • Implement Power of Attorney, planning for wills & trusts
    9. 9. INCOME SUPPORTS Supplemental Security Income (SSI)  Strict income and resource limits  $1010 income/month (in 2012), $1690 if blind  $2000 assets if single, $3000 if married  No work history required  $698 max monthly payment (in 2012) Social Security Disability Insurance (SSDI)  Amount varies, but usually more than SSI  Based on work record (student’s or parent’s)  Student Employment Credits: 6 credits earned in the 3-year period ending when disability starts (under age 24); 1 credit = $1,130 of earnings  Parent’s Work Record: If over age 18, but disabled before age 22, can collect parent’s SSID if parent is retired, disabled, or deceased. TANF  Work-requirement (school may fulfill)  Time limit
    10. 10. SSI & AGE 18 REDETERMINATION Before age 18, SSA looks at child’s ability to function in school At age 18, recipients of SSI will get a letter from SSA. SSA will decide if they meet income limits AND disability definitions as adults INCOME At age 18  SSA looks at adult’s ability to work at a substantial level (2012 SGA)  Parents income no longer counts Childhood Disability Beneficiary / Disabled Adult Child  SSDI under parent (retired, deceased, disabled)  Must be disabled as an adult to continue after age 18
    11. 11. DEFINING DISABILITYChild Disability Standard Adult Disability StandardINCOME: Under 18 years old, parents INCOME: Do not look at parents’ income or o income and assets count assets (< $2000) unless the child lives with parents. If so, some of parents’ income may count toward in kind support and reduce the child’s SSI check (by 1/3).DISABILITY: impairment(s) must o DISABILITY: Must lack Residual Functional cause “marked and severe Capacity (RFC) to perform any jobs that functional limitations” and last at exist in substantial numbers in the national least 12 months – compared with or local economy. functionality of peers o severe impairments prevent substantial gainful activity (SGA), lasting for a continuous period of not less than 12 months or result in death. o SGA = $1010/month in 2012 o SGA = $1690 if blind
    12. 12. HOW WILL REDETERMINATIONHAPPEN? If receiving childhood SSI: SSA will automatically redetermine after 18th birthday.  PRACTICE TIP : If NOT on childhood SSI, apply after age 18 (may have been ineligible due to parent’s income) If denied (i.e. “determined to no longer be disabled”) under the new adult standard)  will receive a letter in the mail stating when last SSI check will arrive. APPEAL RIGHT AWAY!!!  10 days – to file an appeal AND request Aid Pending Appeal (i.e. continue SSI check during appeal)  60 days – to file an appeal with the Social Security Administration (online, or at local SSA office)
    13. 13. AID PENDING APPEAL Continues SSI/SSDI check during appeal if ultimately denied for adult SSI, will have an overpayment SSA will ask claimant OR representative payee to pay back the money received during the appeal process. (10% of future SSI/SSDI checks) Can work out a repayment plan with the Social Security Administration.
    14. 14. DISABILITY REEVALUATION Once determined to be disabled by the adult standard:  SSA may review eligibility every year or every three years if they think the condition may improve over time.  Even for long term disabilities, SSA requires that every case be reviewed every 5-7 years.
    15. 15. HEALTH INSURANCE Adult Medicaid (AABD)  Requirements differ by state  In many states, need to be SSI/SSDI eligible (Ex: IL) Medicare – RARE  ALS (Lou Gehrig’s)  End-stage renal disease  SSDI beneficiary for 24+ months  Parent is:  Retired  Deceased  Disabled  Before age 18  all children  Benefits after age 18  Disabled before Age 22  PRACTICE TIP: apply at age 18, even if over income to preserve disability status for the future.
    16. 16. HEALTH INSURANCE (cont’d)Private Insurance  Group plans  Parent’s insurance (until age 26)  Employer-based  University (varies greatly)  No coverage at some schools  Mandatory plans at some, pre-existing condition riders State Buy-In Plans  Example: IL buy-in plans  High risk pool – IPXP (Premiums ~$140/mth)  ICHIP (premiums vary by age, income, etc..)  Health Benefits for Workers with Disabilities (HBWD) (Premiums ~$40-$50/mth)
    17. 17. CAPACITY Adult Guardianship – When the transition aged youth is unable to make decisions about their affairs for themselves  Types of Guardianship  Plenary  Limited  Temporary  Short-term  Stand-by  Alternatives  Health care surrogate  Mental health advanced directive Powers of Attorney – individual has capacity but may lose capacity in the future (or in emergency)  Power of Attorney for Health Care  Power of Attorney for Property  Power of Attorney for Mental Health Treatment
    18. 18. EDUCATION Transition Planning (IDEA 2004)  Federal  First IEP after age 16, updated annually  Appropriate measurable post-secondary goals based upon age appropriate assessments (plus Monitoring & Eval)  Related to training, education, employment, and (where appropriate) independent living  Defining “transition services”  including course of study to assist the child in reaching IEP goals  includes activities for daily living 504 Plans (§504 of Rehabilitation Act, 1973)  Protections in high school  Higher education  University Office of Disabilities State Provisions (IL)  May provide further protection  Can delay HS until age 15  IL transition planning starts at age 14½  IL: may utilize school transition services until 22nd birthday  Delegation of Rts to make Educational Decisions
    19. 19. VOCATIONAL REHABILITATION Transition/Vocational Programs  Pre-HS Graduation  IEP Transition Plan  Post-Graduation (IL)  Dept. of Rehabilitation Services Individualized Plan for Employment To assist an individual with a disability in preparing for, securing, retaining, or regaining an employment outcome that is consistent with the strengths, capabilities, interests, and informed choice of the individual.
    20. 20. INCOME & ASSETS Limits for SSI  Substantial Gainful Activity (SGA) & Asset limits  Exclusions: Special Needs Trusts, work incentive plans  Moderate income  pooled trusts  Sample SSI work incentive: PASS plan Inheritances  know the consequences Employment  Work incentives (SSI & SSDI incentive)  WIPA contacts – families should consult for work incentives planning  Impact on Income Supports
    21. 21. SSI WORK INCENTIVESo Earned Income Exclusiono Student Earned Income Exclusion o SSA will exclude up to $1,700 of earned income per month, up to $6,840 per yearo PASS Plan o Set aside money for school, vocational training or business o Can use to become SSI eligibleo 1619 (Medicaid eligibility)o Impairment Related Work Expenses Report all Income to SSA & DHS!!!
    22. 22. CALCULATING SSI INCOME SSI Income Limit: $1010 for 2012 BUT SSI and earnings are calculated with a formula. Certain deductions are NOT COUNTED towards SSI eligibility income:  General Income Disregard $20.00  Earned Income Disregard $65.00  Deductions/Exclusions
    23. 23. SSI EARNED INCOME CALCULATION Bob is working and has gross earnings of $900 per month $900 - $85 = $815 $815 / 2 = $407.50 Countable Earnings $698 - $407.50 = $290.50 New SSI Check Total Income = $1,190 Monthly Income Improved By Almost $500!!!
    24. 24. SSDI WORK INCENTIVES Trial Work Period (TWP) = 9 months  Anmonth when earning at least $720 (for 2012)  Non-consecutive, 9 total months Extended Period of Eligibility (EPE)  Based on SGA (amounts change annually) Grace Period Impairment Related Work Expense (IRWE) Subsidy
    25. 25. IN-HOME CARE SUPPORT Types of services  Personal attendant or Nursing hours  Technological supports (communication devices, wheelchairs, pulley)  Respite for caregivers  Homemaker services State Waiver Programs (Examples: IL waivers)  Developmental Disabilities  Home-Based Care  Technological Dependence (until age 21)  Home lifts, pulley systems for bathrooms, etc... Kinship Caregiver programs (ex: IL Dept on Aging)
    26. 26. HEALTH CARE REFORMFOR TRANSITION AGED YOUTH Now effective (Federal Reform):  Children can stay on parents insurance until age 26.  Minors cannot be denied for pre-existing conditions  High Risk Pool buy-in insurance available (IPXP) In 2014:  Insurance exchange active  No longer need a disability determination for Adult Medicaid eligibility.  Adults cannot be denied coverage for pre-existing conditions IL Medicaid Reform:  No more new applicants to All Kids over 300% FPL  Current All Kids recipients over 300% FPL will be grandfathered in until July 2012 only.  50% of Medicaid enrollees in managed care by 2013
    27. 27. MEDICAL TRANSITION The purposeful, planned movement of adolescents and young adults with a chronic physical and mental condition from child-centered to adult- oriented health care systems  Society of Adolescent Medicine. Transition to adult health care for adolescents and young adults with chronic conditions. J of Adolescent Health. 2003: 33, 309-311.
    28. 28. BARRIERS TO SUCCESSFUL MEDICALTRANSITION  Internist feel  Medical competency uncomfortable with  Family involvement childhood conditions  Psychosocial needs  Family-centered care to  System issues Patient-centered care  Maturity/autonomy  Legal Issues  Transition coordination  Insurance, guardianship, day programs, respite  Pediatricians & families uncomfortable transitioning  No set transition plans/ guidelinesPeter, N. et al. Transition from Pediatric to Adult Care: Internists’ Perspectives. Pediatrics 2009, 123 (2); 417-23 .
    29. 29. SO WHAT CAN WE DO ABOUT IT? Patient and family educationSuccessful transition Patient autonomy Finding adult medical providers •Subspecialists •Primary care/medical homes
    30. 30. BUILDING AUTONOMYAssessment of patient’s ability for self care/management- Medications: - knows them, gives own meds, knows why taking, can order meds when running out, knows side effects/things to monitor with different medications- Self care/knowledge of disease - Warning signs/ when to seek help/who to contact, trouble- shooting, devices/procedures (self cathing, etc),- Navigating medical system - Making appointments, filing insurance claims, who to call when sick, understanding specialists’ roles- Finances and living - Income, budgeting, living expenses, employment, IADLs, ADLs, education planning
    31. 31. TRANSITION CHECKLISTS http://www.health.nsw.gov.au/resources/ Accessed 5/25/2011.
    32. 32. BUILDING SKILLS (IL) RIC Life Center: www.lifecenter.ric.org Illinois Centers for Independent Living: List of centers in IL: www.incil.org UCMC website: transitioncare.uchicago.edu Family Resource Center on Disabilities (Chicago area): www.frcd.org/resources/transition Illinois Department of Human Services: Job training and independent living support: www.dhs.state.il.us/page.aspx?item=29727
    33. 33. PORTABLE MEDICAL DOCUMENTReports Common to Most Health Records: Identification Sheet –name, address, telephone number, insurance, and policy number. Problem List Medications History and Physical Consultation Imaging and X-ray Reports Lab Reports Immunization Record Consent and Authorization FormsAdditional Reports Common to Hospital Stays or Surgery: Operative Report Pathology Report Discharge Summarieshttp://www.healthvault.com/personal/index.aspx
    34. 34. TRANSITION PORTABLE MEDICALSUMMARY
    35. 35. HDA MEDICAL-LEGAL PARTNERSHIPSON TRANSITION Children’s Memorial Hospital  Transition team (one social worker, one physician)  Patient education (SAILS program, specialty-based programs)  See poster session submission University of Chicago Medical Center (UCMC)  Resident Interest/Volunteer Specialists  Transition Care Steering Committee  Action-specific subcommittees
    36. 36. UCMC STEERING COMMITTEEGOALS Identify Youth and Young Adults with Special Health Care Needs (YSHCN) in our community Determine the transition needs of YSHCN in our community Study outcomes of YSHCN to determine frequency of lapses of healthcare, lapses of insurance coverage, ER/ hospitalizations Educate medical students, residents, fellows, faculty, nurses, social workers, legal advocates, patients and families regarding transition care
    37. 37. GOALS (CONTINUED) Create a centralized transition care website containing educational materials and a toolkit of resources Create a transition care elective rotation for students and residents Organize transition care educational days (geared toward providers and patients) Secure funding to improve transition care and transition education Study the effect of transition educational interventions on students, residents, faculty and patients.
    38. 38. TRANSITION ACTIVITIES TO DATE Comer Classic Grant funding obtained by two University of Chicago Med-Peds residents to improve transition care and education at the University of Chicago Medical Center (UCMC) IRB exemption obtained to study resident and faculty comfort with transition care: Baseline data obtained and presented locally and internationally by resident physicians, Amy Johnson Lo and Jen McDonnell (to be presented in future slides) Transition care toolkit started with handouts for providers, patients and families developed by Purvi Patel, JD/MPH Transition care website developed: http://transitioncare.uchicago.edu UCMC Transition Care Steering Committee and subcommittees founded.
    39. 39. RESIDENT KNOWLEDGE, ATTITUDES ANDPRACTICES REGARDING TRANSITION CARE:AMY JOHNSON LO, MD AND JENNIFERMCDONNELL, MD To define:  IM, pediatrics and M/P resident knowledge regarding transition care  IM, pediatrics and M/P resident attitudes toward providing transition care  IM, pediatrics and M/P resident practices regarding transition care Information to be used to help develop a transition care curriculum
    40. 40. METHODS Surveys distributed to IM, pediatric and combined IM/pediatric residents  total number of surveys distributed was 175. Dataentered and analyzed using frequencies and chi-squared statistical analysis
    41. 41. Resident DemographicsResponse Rate (n = 75) 42.8%Male 35%Female 56%Internal Medicine (% of total responders) 53%Pediatrics (% of total responders) 35%IM/Peds (% of total responders) 12%Year 1 or 2 in Training 67%Year 3 or 4 in Traning 33%Intend to work in primary care 24%Intend to subspecialize 49%
    42. 42. RESIDENT FAMILIARITY WITH TRANSITION CARE 1% Figure 1. IM, IM/pediatric and pediatric resident 43% V ery Familiar familiarity with Somewhat Familiar56% transition. Unfamiliar Figure 2. Resident familiarity with transition, IM residents vs. Pediatric vs. IM/ped residents.
    43. 43. FAMILIARITY WITH TRANSITIONCARE BY INTENDED CAREER PATH
    44. 44. RESIDENTS’ PERCEIVED BARRIERS TOTRANSITION CARE AT UCMC
    45. 45. TRANSITION CARE IS AN IMPORTANT PARTOF MEDICAL EDUCATION
    46. 46. RETROSPECTIVE TRANSITIONSTUDY IRB submitted To describe the frequency of outcomes of transition to adult care among young people with special health care needs To assess pre-transition factors which are associated with greater risks of poor transition outcomes. To compare the frequency of outcomes of transition among young people with different chronic medical conditions. Ultimately, the information obtained from this study will be used to design a transition program to promote successful transitions to adult care for pediatric subspecialty patients.
    47. 47. RETROSPECTIVE TRANSITIONSTUDY Group 1: Patients ages 19 to 26 with a current or previous diagnosis of JIA or SLE, who received pediatric rheumatology care at UCMC between the ages of 15 and 18 years. Group 2: Patients ages 19 to 26 with a current or previous diagnosis of Diabetes Mellitus who received pediatric endocrinology care at UCMC between the ages of 15 and 18 years. Group 3: Patients ages 19 to 26 with a current or previous diagnosis of Cystic Fibrosis, who received pediatric pulmonology care at UCMC between the ages of 15 and 18 years.
    48. 48. RETROSPECTIVE TRANSITIONSTUDY: METHODS Telephone Surveys Chart Audits Autonomy Checklist Completion
    49. 49. OTHER STUDIES PLANNED Patients 13 -28 yo with DM, JIA, SLE: Prospective study regarding transition outcomes Retrospective and prospective transition studies for patients with HIV and patients with cognitive and physical disabilities. Survey of ACP and AAP regional resident attitudes about transition care
    50. 50. TRANSITION CARE DAY Midwest Region National Med-Peds Residents’ Association Meeting  “Transitions in Care-Transitions in Life”  co-Sponsored by the Illinois Chapter of the American Academy of Pediatrics, Pritzker School of Medicine, Kovler Diabetes Center and the University of Chicago Med-Peds Residency Program  Saturday, May 12, 2012, 8AM-3:30 PM  At University of Chicago Pritzker School Of Medicine  Register at www.transitionsincaremidwest.com Keynote speaker: Jeffrey Arnett, PhD: “Emerging Adulthood”
    51. 51. AGENDA A,B,C’s of Transition Care Transition Care Models Transition Patient Presentations Break-Out Sessions for Generalist and Sub- Specialist groups Illinois Chapter of the American Academy of Pediatrics presentation regarding on-line courses for CME and MOC credit
    52. 52. CASE STUDYFACTS 19 year old, female  6 months past turning 19 Medical History: ulcerative colitis & seizure disorder • Total abdominal colectomy and ileostomy done in the past. • Needs 2 future surgeries to complete treatment • seizure disorder  3-5 non-convulsive seizures per month with medication, had one convulsive seizure in the past year Insurance History • Was on All Kids, never on group insurance • Parents uninsured Income • In college • Working at nursing home. ~$600/month • Applied for childhood SSI just before turning 17, was denied and appealed. Set for hearing in front of Administrative Law Judge (ALJ).ISSUES • Is she eligible for SSI/Adult Medicaid? • If not Medicaid, can she qualify for another insurance program? • Other Insurance Options: IL High Risk Pool (IPXP), IL CHIP, or Health Benefits for Workers w/Disabilities (HBWD)OUTCOMES • Qualifies for childhood SSI (back benefit through her 18 th birthday) • MAY qualify for adult SSI if it impairs her ability to work; if so, will qualify for adult Medicaid in IL • If not SSI/Medicaid eligible as an adult? • Maybe HBWD if “disabled” for SSI but over income/asset limit (low premiums, $40- $50) • Will not qualify for ICHIP (no creditable coverage for ICHIP, must be SSI disabled for HBWD) • Should qualify immediately for IPXP b/c ALREADY uninsured for 6 months (premium $140-150) • Transition to an Adult Medical Provider? – finding adult specialists can be difficult
    53. 53. OTHER RESOURCESChildren with Speical Health Care Needs In Illinois the Division of Illinois network of centers for independent livingSpecialized Care for Children 800-587-1227800-322-3722 http://www.incil.org/http://www.uic.edu/hsc/dsccFamily Matters Parent Training and Info Center Adolescent health transition project at the University of Washington866-436-7842 206-685-1358http://www.fmptic.org http://depts.washington.edu/healthtr/SSI for children SSDI for disabled adult700-7272-1213 800-772-1213http://www.ssa.gov/pubs/10026.html http://www.ssa.gob/pubs/10026.html#older-childrenIllnois Assistive Technology Porgram SSI the work site800-852-5110 800-772-1213http://www.iltech.org http://www.socialsecurity.gov/work/index.htmlHealth and Ready to Work National Center Illnois state board of educationhttp://www.hrtw.org/ 312-814-2220 http://wwww.isbe.state.il.us/National Dissemination Center for Children and Youth with The ArcDisabilities 301-565-3842800-695-0285 http://www.thearc.orghttp://www.nichcy.org/Health Benefits for workers with disabilities Job accommodation network800-226-0768 www.jan.wvu.eduwww.hbwdillinois.com/Division of Rehabilitation Services ICAAP800-226-6154http://www.dhs.state.il.us/org/Family resources center on disability Illinois State Board of Education312-939-3513 312-814-2220http://www.fred.org/contaact Special education compliance division: 312-814-5560Life Center at RICwww.lifecenter.ric.org
    54. 54. FROM DIRECT CASE REFERRALS TOSTATEWIDE POLICY ADVOCACYRecent legislative initiatives on behalf of childrenwith special needs (IL)  Home Hospital Instruction Law  Asthma Inhaler Self-Carry Law  Special Education Parent/Expert Classroom Access
    55. 55. HOME HOSPITAL INSTRUCTION- BACKGROUND The Illinois School Code requires school districts to provide Home/Hospital Instruction to children who experience extended, medical-related school absences or are absent on an ongoing intermittent basis due to a medical condition.
    56. 56. HOME HOSPITAL INSTRUCTIONCHANGES – HB 1706 HB 1706 introduced 3 important improvements to HHI: 1. “Ongoing intermittent basis” means missing 2 consecutive days multiple times per year such that at least 10 days total are missed 2. HHI must start within 5 school days after the school receives the doctor’s statement 3. HHI must include special education related services required by IEP or 504 plan *IL PA 97-123 (2001) - Improvements Effective July 14, 2011
    57. 57. SPECIAL EDUCATION CLASSROOMACCESS: BACKGROUND Before the amendment parents and their experts were not guaranteed access to the child, facilities and/or school staff. The decision for access was completely within the discretion of the school district or local school.
    58. 58. SPECIAL EDUCATIONPARENT/EXPERT CLASSROOMACCESS LAW Gives parents or a parent’s private evaluator/expert reasonable and unimpeded access to:  observe their child in his current or proposed special education classroom,  educational personnel, and  school facilities. Prior to visiting, the parent or evaluator may be required by the school district to inform school personnel, in writing, of the purpose of the proposed visit and the approximate duration. *IL PA 96-657 (2009) - Effective: August 25, 2009
    59. 59. CONTACT Health & Disability Advocates http://www.hdadvocates.org Twitter: @hdadvocates Purvi P. Patel, JD, MPH ppatel@hdadvocates.org Twitter: @patelpurvip Amy Zimmerman, JD azimmerman@hdadvocates.orgUniversity of Chicago Transition Care Steering Committee http://transitioncare.uchicago.edu Rita Rossi-Foulkes, MD, FAAP, MS, FACP rita1@uchicago.edu
    60. 60. LITERATURE CITED• American Academy of Pediatrics, Committee on Children with Disabilities and Committee on Adolescence. Transition of care provided for adolescents with special health care needs. Pediatrics. 1996;98(6):1203-6.• Bronheim S, Fiel S, Schidlow DB, et al. Crossings: a manual for transition of chronically ill youth to adult health care. Washington, DC: Georgetown University Child Development Center; 1988.• Burke R, Spoerri M, eds. Survey of Primary Care Pediatricians on the Transition and Transfer of Adolescents to Adult Health Care. Clinical Pediatrics 2008;47:347-354.• Callahan ST, Feinstein R, and Keenan P. Transition from pediatric to adult-oriented health care: a challenge for patients with chronic disease. Current Opinions in Pediatrics. 2001;13:310-316.• Canadian Paediatric Society. Transition to Adult Care for Youth with Special Health Care Needs. Paediatr Child Health 2007;12:785-8.• Gortmaker SL, Sappenfield W. Chronic childhood disorders: prevalence and impact. Pediatr Clin North Am. 1984;31(1):3-18.• Harvey J, Pinzon J. Care of Adolescents with Chronic Conditions. Paediatr Child Health 2006;11:43-8.• Home Hospital Instruction Bill of 2011, PA 97-123. 105 ILCS 5/14-13.01• Klass P. A Graduation that may carry unnecessary risk. The New York Times. June 13, 2011: D5.• Magrab P, Millar H, eds. Surgeon General Conference. Growing Up and Getting Health Care: Youth with Special Health Care Needs, a summary of conference proceedings. Washington, DC: National Center for Networking Community Based Services.• Newachek PW., et al.. An epidemiologic profile of children with special health care needs. Pediatrics. 1998;102(1):117-23.• Parent/Expert Classroom Access Law of 2009, PA 96-657. 105 ILCS 5/14-8.02• Peter N, et al. Transition from Pediatric to Adult Care: Internists’ Perspectives. Pediatrics 2009;123(2):417-23.• Section 504 of the Rehabilitation Act of 1973. 29 U.S.C. 794.• Society of Adolescent Medicine. Transition to adult health care for adolescents and young adults with chronic conditions. J of Adolescent Health. 2003;33:309-311.• Tuchman LK et al. Cystic Fibrosis and transition to adult medical care. Pediatrics. 2010;125:566-573.• Viner R. Barriers and good practice in transition from paediatric to adult care. Journal of the Royal Society of Medicine. 2001;40(94):2- 4.• Wang G, Grembowski D, eds. Risk of Losing Insurance During the Transition into Adulthood Among Insured Youth with Disabilities. Matern Child Health J 2009;14(1):67-74.

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