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.

1. TRANSITION CARE:
COLLABORATIVE STRATEGIES TO
ADDRESS THE MEDICAL-LEGAL
NEEDS OF EMERGING ADULTS.
On Twitter:
@patelpurvip
@hdadvocates
Purvi Patel, J.D/MPH., Amy Zimmerman, J.D.
Health &Disability Advocates
Rita Rossi-Foulkes, M.D., Chair University of
Chicago Transition Care Steering Committee

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. 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. 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. 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. COMMON LEGAL ISSUES IN
TRANSITION
 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. 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 IEP
Consider
Special Begin exploring adult
Needs 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. 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 out
Consider Begin exploring adult of childhood Medicaid
Special 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 of
Must begin high school Rehabilitation services
(elementary school can keep If parents have private
student an extra year past insurance, can stay on
age 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. 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. 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. DEFINING DISABILITY
Child Disability Standard Adult Disability Standard
INCOME: 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. HOW WILL REDETERMINATION
HAPPEN?
 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. 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. 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. 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. 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. 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. 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. 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. 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. SSI WORK INCENTIVES
o Earned Income Exclusion
o Student Earned Income Exclusion
o SSA will exclude up to $1,700 of earned income per month,
up to $6,840 per year
o PASS Plan
o Set aside money for school, vocational training or business
o Can use to become SSI eligible
o 1619 (Medicaid eligibility)
o Impairment Related Work Expenses
Report all Income to SSA & DHS!!!

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. 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. 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. 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. HEALTH CARE REFORM
FOR 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. 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. BARRIERS TO SUCCESSFUL MEDICAL
TRANSITION  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/
guidelines
Peter, N. et al. Transition from Pediatric to Adult Care: Internists’ Perspectives. Pediatrics 2009, 123 (2); 417-23 .

29. SO WHAT CAN WE DO ABOUT IT?
Patient and family education
Successful transition Patient autonomy
Finding adult medical providers
•Subspecialists
•Primary care/medical homes

30. BUILDING AUTONOMY
Assessment 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. TRANSITION CHECKLISTS
http://www.health.nsw.gov.au/resources/
Accessed 5/25/2011.

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. PORTABLE MEDICAL DOCUMENT
Reports 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 Forms
Additional Reports Common to Hospital Stays or Surgery:
 Operative Report
 Pathology Report
 Discharge Summaries
http://www.healthvault.com/personal/index.aspx

34. TRANSITION PORTABLE MEDICAL
SUMMARY

35. HDA MEDICAL-LEGAL PARTNERSHIPS
ON 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. UCMC STEERING COMMITTEE
GOALS
 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. 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. 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. RESIDENT KNOWLEDGE, ATTITUDES AND
PRACTICES REGARDING TRANSITION CARE:
AMY JOHNSON LO, MD AND JENNIFER
MCDONNELL, 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. 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. Resident Demographics
Response 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. RESIDENT FAMILIARITY WITH
TRANSITION CARE
1% Figure 1. IM,
IM/pediatric and
pediatric resident
43%
V ery Familiar familiarity with
Somewhat Familiar
56%
transition.
Unfamiliar
Figure 2. Resident
familiarity with
transition, IM
residents vs. Pediatric
vs. IM/ped residents.

43. FAMILIARITY WITH TRANSITION
CARE BY INTENDED CAREER PATH

44. RESIDENTS’ PERCEIVED BARRIERS TO
TRANSITION CARE AT UCMC

45. TRANSITION CARE IS AN IMPORTANT PART
OF MEDICAL EDUCATION

46. RETROSPECTIVE TRANSITION
STUDY
 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. RETROSPECTIVE TRANSITION
STUDY
 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. RETROSPECTIVE TRANSITION
STUDY: METHODS
 Telephone Surveys
 Chart Audits
 Autonomy Checklist Completion

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. 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. 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. CASE STUDY
FACTS 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. OTHER RESOURCES
Children with Speical Health Care Needs In Illinois the Division of Illinois network of centers for independent living
Specialized Care for Children 800-587-1227
800-322-3722 http://www.incil.org/
http://www.uic.edu/hsc/dscc
Family Matters Parent Training and Info Center Adolescent health transition project at the University of Washington
866-436-7842 206-685-1358
http://www.fmptic.org http://depts.washington.edu/healthtr/
SSI for children SSDI for disabled adult
700-7272-1213 800-772-1213
http://www.ssa.gov/pubs/10026.html http://www.ssa.gob/pubs/10026.html#older-children
Illnois Assistive Technology Porgram SSI the work site
800-852-5110 800-772-1213
http://www.iltech.org http://www.socialsecurity.gov/work/index.html
Health and Ready to Work National Center Illnois state board of education
http://www.hrtw.org/ 312-814-2220
http://wwww.isbe.state.il.us/
National Dissemination Center for Children and Youth with The Arc
Disabilities 301-565-3842
800-695-0285 http://www.thearc.org
http://www.nichcy.org/
Health Benefits for workers with disabilities Job accommodation network
800-226-0768 www.jan.wvu.edu
www.hbwdillinois.com/
Division of Rehabilitation Services ICAAP
800-226-6154
http://www.dhs.state.il.us/org/
Family resources center on disability Illinois State Board of Education
312-939-3513 312-814-2220
http://www.fred.org/contaact Special education compliance division:
312-814-5560
Life Center at RIC
www.lifecenter.ric.org

54. FROM DIRECT CASE REFERRALS TO
STATEWIDE POLICY ADVOCACY
Recent legislative initiatives on behalf of children
with special needs (IL)
 Home Hospital Instruction Law
 Asthma Inhaler Self-Carry Law
 Special Education Parent/Expert Classroom Access

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. HOME HOSPITAL INSTRUCTION
CHANGES – 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. SPECIAL EDUCATION CLASSROOM
ACCESS: 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. SPECIAL EDUCATION
PARENT/EXPERT CLASSROOM
ACCESS 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. 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.org
University of Chicago Transition Care Steering Committee
http://transitioncare.uchicago.edu
Rita Rossi-Foulkes, MD, FAAP, MS, FACP
rita1@uchicago.edu

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.