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

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

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?

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.

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

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

FEDERAL TRANSITION TIMELINE

13 14 15 16 17 18 19 20 21 22 23 24 25 26

Consider Special Needs Trust

IDEA law requires Transition Plan with measurable post-secondary goals added into IEP

Vocational Training

• Apply for Adult SSI (either first time or 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

If parents have private insurance, can stay on their policy until age 26(Accountable Care Act)

Begin exploring adult healthcare (PCPs & specialists)

• Age out of state children’s Medicaid (Except DCFS beneficiaries)

• apply for adult health insurance (Adult Medicaid, state buy-in, private insurance)

IL TRANSITION TIMELINE

13 14 15 16 17 18 19 20 21 22 23 24 25 26

Consider Special Needs Trust

IL law requires Transition Plan with measurable post-secondary goals added into IEP

Consult IDHS Division of Rehabilitation services

• Apply for Adult SSI (either first time or 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

Graduate from high school (if using extended transition services)

• End of services from DSCC • DCFS beneficiaries age out

of childhood Medicaid

If parents have private insurance, can stay on their policy until age 26

Must begin high school (elementary school can keep student an extra year past age 14 If requested)

Begin exploring adult healthcare (PCPs & specialists)

• Age out of IL All Kids (Except DCFS beneficiaries)

• apply for adult health insurance (Adult Medicaid, IPXP, ICHIP, private insurance)

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

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

SSI & AGE 18 REDETERMINATION

Child Disability Standard

INCOME: Under 18 years old, parents income and assets count

DISABILITY: impairment(s) must cause “marked and severe functional limitations” and last at least 12 months – compared with functionality of peers

Adult Disability Standard

o INCOME: Do not look at parents’ income or 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).

o DISABILITY: Must lack Residual Functional Capacity (RFC) to perform any jobs that exist in substantial numbers in the national or local economy.

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 2012o SGA = $1690 if blind

DEFINING DISABILITY

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)

HOW WILL REDETERMINATION HAPPEN?

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.

AID PENDING APPEAL

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.

DISABILITY REEVALUATION

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.

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)

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

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

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.

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

o Earned Income Exclusion

o Student Earned Income Exclusiono SSA will exclude up to $1,700 of earned income per

month, up to $6,840 per year

o PASS Plano Set aside money for school, vocational training or businesso Can use to become SSI eligible

o 1619 (Medicaid eligibility)

o Impairment Related Work ExpensesReport all Income to SSA & DHS!!!

SSI WORK INCENTIVES

SSI Income Limit: $1010 for 2012BUT

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

CALCULATING SSI INCOME

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!!!

SSI EARNED INCOME CALCULATION

Trial Work Period (TWP) = 9 monthsAn month 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

SSDI WORK INCENTIVES

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)

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

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.

BARRIERS TO SUCCESSFUL MEDICAL TRANSITION Medical competency

Family involvement Psychosocial needs System issues Maturity/autonomy Transition

coordination

Internist feel uncomfortable with childhood conditions

Family-centered care to Patient-centered care

Legal Issues 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.

SO WHAT CAN WE DO ABOUT IT?

Successful transition

Patient and family education

Patient autonomy

Finding adult medical providers•Subspecialists•Primary care/medical homes

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

TRANSITION CHECKLISTS

http://www.health.nsw.gov.au/resources/gmct/transition/pdf/checklist_health_prof.pdfAccessed 5/25/2011.

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

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 FormsAdditional Reports Common to Hospital Stays or

Surgery: Operative Report Pathology Report Discharge Summaries

http://www.healthvault.com/personal/index.aspx

TRANSITION PORTABLE MEDICAL SUMMARY

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

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

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.

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.

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

METHODS

Surveys distributed to IM, pediatric and combined IM/pediatric residents total number of surveys distributed was 175.

Data entered and analyzed using frequencies and chi-squared statistical analysis

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%

RESIDENT FAMILIARITY WITH TRANSITION CARE

1%

43%

56%

V ery Familiar

Somewhat Familiar

Unfamiliar

Figure 1. IM, IM/pediatric and pediatric resident familiarity with transition.

Figure 2. Resident familiarity with transition, IM residents vs. Pediatric vs. IM/ped residents.

FAMILIARITY WITH TRANSITION CARE BY INTENDED CAREER

PATH

RESIDENTS’ PERCEIVED BARRIERS TO TRANSITION CARE AT UCMC

TRANSITION CARE IS AN IMPORTANT PART OF MEDICAL EDUCATION

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.

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.

RETROSPECTIVE TRANSITION STUDY: METHODS

Telephone Surveys

Chart Audits

Autonomy Checklist Completion

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

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”

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

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 yearInsurance 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

OTHER RESOURCESChildren with Speical Health Care Needs In Illinois the Division of Specialized Care for Children800-322-3722http://www.uic.edu/hsc/dscc

Illinois network of centers for independent living800-587-1227http://www.incil.org/

Family Matters Parent Training and Info Center866-436-7842http://www.fmptic.org

Adolescent health transition project at the University of Washington206-685-1358http://depts.washington.edu/healthtr/

SSI for children700-7272-1213http://www.ssa.gov/pubs/10026.html

SSDI for disabled adult800-772-1213http://www.ssa.gob/pubs/10026.html#older-children

Illnois Assistive Technology Porgram800-852-5110http://www.iltech.org

SSI the work site800-772-1213http://www.socialsecurity.gov/work/index.html

Health and Ready to Work National Centerhttp://www.hrtw.org/

Illnois state board of education312-814-2220http://wwww.isbe.state.il.us/

National Dissemination Center for Children and Youth with Disabilities800-695-0285http://www.nichcy.org/

The Arc301-565-3842http://www.thearc.org

Health Benefits for workers with disabilities800-226-0768www.hbwdillinois.com/

Job accommodation networkwww.jan.wvu.edu

Division of Rehabilitation Services800-226-6154http://www.dhs.state.il.us/org/

ICAAP

Family resources center on disability312-939-3513http://www.fred.org/contaact

Illinois State Board of Education312-814-2220Special education compliance division:312-814-5560

Life Center at RICwww.lifecenter.ric.org

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

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.

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

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.

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

CONTACTHealth & 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 Committeehttp://transitioncare.uchicago.edu

Rita Rossi-Foulkes, MD, FAAP, MS, FACPrita1@uchicago.edu

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.