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Richard Antonelli, MDMedical Consultant
Ceci Shapland, RN, MSNHRTW Family/Youth Consultant
Mallory CyrHRTW Youth Coordinator
7th Annual Forum for Improving Children’s Healthcare
March 20, 2008
Healthy & Ready to Work, to Live and to Participate!
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Title V Leadership
Toni Wall, MPA
Kathy Blomquist, RN, PhD
Theresa Glore, MS
Federal Policy
Patti Hackett, MEd
Tom Gloss
Interagency Partnerships
Debbie Gilmer, MEd
Medical Home & Transition
Richard Antonelli, MD, MS, FAAP
Patience H. White, MD, MA, FAAP
Betty Presler, ARNP, PhD
Family, Youth & Cultural Competence
Mallory Cyr
Ceci Shapland, MSN
Trish Thomas HRSA/MCHB Project Officer
Elizabeth McGuire
HRTW TEAM
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www.hrtw.org
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Disclosure
• Neither Dr. Antonelli, Ms. Cyr, nor Ms. Shapland, nor any members of our immediate families have a financial relationship or interest with any proprietary entity producing health care goods or services related to the content of this CME activity.
• Our content will not include discussion/reference of any commercial products or services.
• We do not intend to discuss an unapproved/ investigative use of commercial products/devices.
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Objectives
• List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare
• Define the role of physicians, families, youth and other care providers/coordinators in the transition of youth from pediatric to adult medical care.
• Define appropriate use of transition tools from the HRTW website and other national resources.
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Health Impacts All Aspects of Life
• Success in the classroom, within the community, and on the job requires that young people are healthy.
• To stay healthy, young people need an understanding of their health and to participate in their health care decisions.
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What is Health Care Transition?
Transition is the deliberate, coordinated provision of developmentally appropriate
and culturally competent health assessments, counseling, and referrals.
• Components of successful transition• Self-Determination• Person Centered Planning• Prep for Adult health care• Work /Independence • Inclusion in community life • Start Early
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Objectives
• List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare
• Define the role of physicians, families, youth and other care providers/coordinators in the transition of youth from pediatric to adult medical care.
• Define appropriate use of transition tools from the HRTW website and other national resources.
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Think About
• Who is caring for youth with SHCN between ages 15-25?
• What do you think YOUTH want to know about their health care/status?
• At what age should children/youth start asking their own questions to their Doctor?
• At what age does your practice encourage assent signatures?
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Outcome Realities
• Nearly 40% cannot identify a primary care physician
• 20% consider their pediatric specialist to be their ‘regular’ physician
• Primary health concerns that are not being met
• Fewer work opportunities, lower high school graduation rates and high drop out from college
• YSHCN are 3 X more likely to live on income < $15,000
CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002
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Survey Components Percentages
Percent of transitioned patients < 2% in 95% of practices
Transitioned pats. came with an introduction 75%75%
Transitioned patients know their meds 45%45%
Transitioned patients know their disease 30%30%
Transitioned patients ask questions 20%20%
Parents of transitioned patients ask questions 69%69%
Transitioned Adults believed they had a difficult transition
40%40%
Maria Ferris, MD, PhD, MPH, UNC Kidney Center
Internal Medicine Nephrologists (n=35)
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IOM Quality Measures
The Health care system should be:
• Safe
• Effective
• Patient centered
• Timely
• Efficient
• Equitable
SOURCE: Crossing the Quality Chasm 2001
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Health Care Processes Should Have:
• Care based on continuing healing relationships
• Customization based on patient needs and values
• Patient as source of control
• Shared knowledge and free flow of information
• Safety
• Transparency
• Anticipation of needs
SOURCE: Crossing the Quality Chasm 2001
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How Do We Achieve That Type of System?
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National Center of Medical Home Initiatives
Care that is:– Accessible– Family-centered– Comprehensive– Continuous– Coordinated– Compassionate– Culturally-effective
Elements of Medical Home and for which the primary care provider shares
responsibility with the family.
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What is Medical Home Really?
A Medical Home is a community-based, primary care
setting that integrates high quality, evidence-based
standards in providing and coordinating family-centered
health promotion as well as acute and chronic condition
management.
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What is Medical Home Really?
A sub-specialist can provide a Medical Home as long
as all elements of the care needs of the patient are
addressed.
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Functional and Clinical Outcomes
Resources and Policies
Community
Care Model for Child Health in a Medical Home
Adapted from Wagner, et al
Health System
Health Care Organization (Medical Home)
Delivery
SystemDesign
Decision
Support
ClinicalInformatio
nSystems
Care Partnership
Support
Informed,ActivatedPatient/Family
Prepared,ProactivePractice Team
Family -centered
Coordinated and EquitableTimely & efficient
Evidence-based & safe
Supportive, Integrated Community
Prepared,ProactivePractice Team
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Provider Parent Young Person
Major responsibility Provides care Receives care
Support to parent and child
Manages Participates
Consultant Supervisor Manager
Resource Consultant Supervisor
Shared Decision Making
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Prepare for the Realities of Health Care Services
Difference in System Practices
• Pediatric Services: Family Driven
• Adult Services: Consumer Driven
The youth and family finds themselves between two medical world
…..that often do not communicate….
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Pediatric Adult
Age-relatedGrowth& development, future focussed
Maintenance/decline:Optimize the present
Focus Family Individual
ApproachPaternalisticProactive
Collaborative,Reactive
Shared decision-making With parent With patient
Services Entitlement Qualify/eligibility
Non-adherence >Assistance > tolerance
Procedural Pain Lower threshold of active input
Higher threshold for active input
Tolerance of immaturity Higher Lower
Coordination with federal systems
Greater interface with education
Greater interface with employment
Care provision Interdisciplinary Multidisciplinary
# of patients Fewer Greater
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Think About
• Are you familiar with the ACP?AAP/AAFP/Consensus Statement?
• How do you teach children and youth about their wellness baseline?
• What 3 essential skills you can teach in the office encounter?
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A consensus statement
on health care transitions for young adults with special health care needs
• American Academy of Pediatrics
• American Academy of Family Physicians
• American College of Physicians - American Society of Internal Medicine
Pediatrics 2002:110 (suppl) 1304-1306
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Survey of Pediatric Practices on Transition Policies for YSHCN
• A pilot survey based on the policy recommendations of the consensus statement transition statement was completed in 2005 by 100% of 21 practices (146 physicians and 36 nurse practitioners) in Central Pennsylvania.
• The practices had volunteered to participate in developing a comprehensive family centered model of care.
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Results of Pediatric Practice Survey
• 38% had a stated policy in their practice for when a YSHCN should transfer to an adult physician
• 0% had policy posted for families to see
• 66% had identified adult practices for referral.
• 19% had a policy to discuss legal issues for adulthood before age 18.
• 33% had identified a transition coordinator in the office
• 29% had care plans for YSHCN supporting transition process
Source: White PAS 2006
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Results of Pediatric Practice Survey
• 4% (one practice) used an individualized medical transition plan
• 29% had a plan - transportable medical record
• 62% rated their practice as not having a transition process but were interested in developing one
• 52% wanted assistance in developing forms/procedures
• 71% wanted assistance in coding for transition.
Source: White PAS 2006
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6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care
1. Identify primary care provider
• Peds to adult
• Specialty providers
• Other providers
Pediatrics 2002:110 (suppl) 1304-1306
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6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care
2. Identify core knowledge and skills
• Encounter checklists
• Outcome lists
• Teaching tools
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Core Knowledge & Skills: POLICY
• Identified staff person coordinates transition activities
• Office forms are developed to support transition processes
• CPT coding is used to maximize reimbursement for transition services
• Legal health care decision making is discussed prior to youth turning 18
• Prior to age 18, youth sign assent forms for treatments, whenever possible
• Written transition policy states expected age youth should no longer see a pediatric HCP and /or when youth expected to see HCP alone
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Core Knowledge & Skills: MEDICAL HOME
• Practice provides care coordination for youth with complex conditions
• Practice creates an individualized health transition plan before age 14
• Practice refers youth to specific primary care physicians
• Practice provides support and confers with adult providers post transfer
• Practice actively recruits adult primary care /specialty providers for referral
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Core Knowledge & Skills: FAMILY & YOUTH
• Practice discusses transition after diagnosis, and planning with families/youth begins early (ped practice) or when youth are transferred to the practice (adult practice)
• Practice provides educational packet or handouts on expectations and information about transition
• Youth participate in shared care management and self care (call for appt/ Rx refills)
• Practice assists families/youth to develop an emergency plan (health crisis and weather or other environmental disasters)
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Core Knowledge & Skills: FAMILY & YOUTH
• Practice assists with planning for school and/or work accommodations
• Practice assists with medical documentation for program eligibility (SSI, VR, College)
• Practice refers family/youth to resources that support skill-building: mentoring, camps, recreation, activities of daily living, volunteer/ paid work experiences
• Practice invites youth to be QI partner
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Post-secondary: Medical Issues
• Selection of school: Career training with support services and scholarships.
• Medical supports needed at school, nearby campus, and plans for emergency and inpatient events.
• Insurance Coverage (is it adequate and is it one plan or a patch of plans)
• Modifications: Work Load, Medical Care, and Proactive Wellness
• Visit the DSS at the start of school
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6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care3. Maintain an up-to-date medical summary that is portable
and accessible
• Knowledge of condition, prioritize health issues
• Communication / learning / culture
• Medications and equipment
• Provider contact information
• Emergency planning
• Insurance information, health surrogate
Pediatrics 2002:110 (suppl) 1304-1306
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6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care4. Create a written health care transition plan by age 14:
what services, who provides, how financed
• Expecting, anticipating and planning
• Experiences and exposures
• Skills: practice, practice, practice
• Collaboration with schools (add health skills to IEP) and community resources
Pediatrics 2002:110 (suppl) 1304-1306
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Collaboration with Community Partners
• Special Education Co-ops
• Higher Education
• Vocational Rehabilitation/
• Workforce Development
• Centers for Independent Living
• Housing, Transportation, Personal Assistance, and Recreation
• Mental health
• Grant projects in your state
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6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care5. Apply preventive screening guidelines
• Stay healthy
• Prevent secondary disabilities
• Catch problems early
Pediatrics 2002:110 (suppl) 1304-1306
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Core Knowledge & Skills: SCREENING
• Exams include routine screening for risk taking and prevention of secondary disabilities
• Practice teaches youth lifelong preventive care, how to identify health baseline and report problems early; youth know wellness routines, diet/exercise, etc.
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Screen for All Health Needs
• Nutrition (Stamina)
• Exercise
• Sexuality Issues
• Mental Health
• Routine (Immunizations, Blood-work, Vision, etc.)
• Secondary Conditions/Disabilities
• Accelerated Aging issues
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6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care
6. Ensure affordable, continuous health insurance coverage
• Payment for services
• Learn responsible use of resources
Pediatrics 2002:110 (suppl) 1304-1306
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Core Knowledge & Skills: HEALTH CARE INSURANCE
• Practice is knowledgeable about state mandated and other insurance benefits for youth after age 18
• Practice provides medical documentation when needed to maintain benefits
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Transition & ……Insurance
NO HEALTH INSURANCE
• 40% college graduates (first year after grad)
• 1/2 of HS grads who don’t go to college
• 40% age 19–29, uninsured during the year
• 2x rate for adults ages 30-64
SOURCE: Commonwealth Fund 2003
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Extended Coverage – Family Plan
• Adult Disabled Dependent Care
Incapable of self-sustaining employment by reason of mental or physical handicap, as certified by the child's physician on a form provided by the insurer, hospital or medical service corporation or health care center
• Adult, childless continued on Family Plan
Increasing age limit to 25-30
CO, CT, DE, ID, IN, IL, ME, MD, MA, MI, MT, NH, NJ, NM, OR, PA, RI, SD, TX, VT, VA, WA, WV
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Transition to Adulthood
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Objectives
• List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare
• Define the role of physicians, families, youth and other care providers/coordinators in the transition of youth from pediatric to adult medical care.
• Define appropriate use of transition tools from the HRTW website and other national resources.
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Youth With Disabilities: Stated Needs for Success in Adulthood
PRIORITIES:
• Career development (develop skills for a job and how to find out about jobs they would enjoy)
• Independent living skills
• Finding quality medical care (paying for it; USA)
• Legal rights
• Protect themselves from crime (USA)
• Obtain financing for school (USA)
SOURCE: Point of Departure, a PACER Center publication Fall, 1996
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Youth With Disabilities: Stated Needs for Success in Adulthood
Main concerns for health:
• What to do in an emergency,
• Learning to stay healthy*
• How to get health insurance*,
• What could happen if condition gets worse.
SOURCE: Joint survey - Minnesota Title V CSHCN Program and the PACER Center, 1995*SOURCE: National Youth Leadership Network Survey-2001
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Factors Associated With Resilience for Youth With Disabilities:
Which is most important?
• Self-perception as not “handicapped”
• Involvement with household chores
• Having a network of friends
• Having non-disabled and disabled friends
• Family and peer support
• Parental support w/out over protectiveness
Source: Weiner, 1992
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Health & Wellness: Being Informed
“The physician’s prime responsibility is the medical management of the young person’s disease, but the outcome of this medical intervention is irrelevant unless the young person acquires the required skills to manage the disease and his/her life.”
SOURCE: Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374
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EXPECTATIONS: • What do you want to do when you are older?• Next year? • Five years?
TEACH: • What can you tell me about your medical issues? • Do they affect you from doing what you want?
OPINION: • What do you think of the…? • Be open and honest.. listen and be “askable”…• Involve in decision making (assent to consent,
give them a sense of competence)
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Levels of Support
Levels of Support Family Role Young Person
Independent Coach
Can do or can direct others
Interdependent ConsultantCoordinates
Can do or can direct others
May need support in some areas
Dependent ManagesCoordinates
expand circle of support
Needs support full-time -all areasexpand circle of support
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ASSENT to CONSENT
Eastern Maine Medical Center
• A parent or guardian is generally required to sign for a patient under the age of 18. Patients aged 14-17 should also sign. See IDD 20.041.
• If an adult is unable to make or communicate medical decisions, then the following may sign in the priority given: agent under healthcare power of attorney, guardian, spouse, domestic partner, next-of-kin. See IDD 20.060 Indicate capacity of representative.
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Handout: Portable Medical SummaryCarry in your wallet
Good Days
• Cheat Sheet: Use as a reference tool
• Accurate medical history
• Correct contact #s
• Document disability
Health Crisis
• Expedite EMS transport & ER/ED care
• Paper talks when you can not
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Preparing for the 15 minute Doctor Visit
Know Your Health & Wellness Baseline
• How does your body feel on a good day?
• Prepare questions at each visit
• Give brief health status & overview of needs.
• Know emergency plan when health changes.
• What is your typical body temperature?
• Respiration, heart rate and blood pressure.
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Do you have “ICE” in your cell phone contact list?
To Program:
• Create new contact
• Space or Underscore __ • (this bumps listing to the top)
• Type “ICE – 01” • ADD Name of Person• include all ph #s• Note your allergies
• You can have up to 3 ICE contacts (per EMS)
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Skills for
Children & Youth
What to do
By Age 10
Before Age 18
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• CHORES: Are you doing chores?
• ATTENDANCE: How are you doing in school?
• PLANNING: How are you doing with your plan?
• PARTICIPATION: What do you do when you are not in school?
• CAREER: What kind of work do you want?
• STAY WELL: Are you taking care of your health?
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Skills Before 10 Before 18
• Carry and present insurance card X
• Know wellness baseline, Dx, Meds X X
• Make own Doctor appts X
• Call in Rx X
• Learning Choice X
• Decision making (assent to consent) X
• Prepare for Doc visit: 5 Qs X X
• Present Co-pay X X
• Assess: Insurance, SSI, VR X
• Gather disability documentation X
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Transition & ……Family
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Prepare for Changing Roles: Families & Youth
• Temporary spokesperson on behalf of minor child
• Until age 18, or declared by the court
• 2 voices to be heard: families and CY
• Opportunities: TRY, fail, relearn, try again
• Attain Skills = Practice
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Survey of Family to Family Health Information Centers
• Key Points
• Identified fragmentation of system-100%
• Biggest need: linkages to community
resources
• Resource for healthcare facilities and
providers
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Changing Roles
• Checklist-tool
• Assess skills
• Identify supports
• Guardianship/Conservatorship
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Transition and the Youth with Development Disabilities
• Level of participation
• Supports
• Health advocate
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Bottom Line
With or without us - youth and families get older and will
move on…Think what can make it easier; do what’s in
your control and support youth to tackle what’s their
control.
• Start early!!!!!
• Reinforce life span skills - Prepare for the marathon
• Assist youth to learn how to extend wellness, practice skills and learn
• Reality check: Have all of us done the prep work for the send off before the hand off?
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Transition is complete when:
• Youth has health care that is paid for
• Care that is developmentally appropriate
• Able to self manage or support is identified
• Able to make health care decisions or support is in place
• Youth Leaders are partners in policy review and development
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Effects of a well planned transition:
• Improved disease control
• Vocational readiness
• Quality life
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What would
you do,
if you
thought
you could
not fail?
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Resources
HEALTHY & READY TO WORK www.hrtw.org
• HRTW Portable Medical Summary - One page summary of health needs that youth or others can carry. Information contains medical history, current medication, name of health surrogate, health insurance numbers, contact information for treating doctors, pharmacy, home health and other vendors.
• Understanding Health Insurance - Web links to Choosing a Plan, Paying for Care, Public Insurance, Private Insurance, Policy / Advocacy Centers and Insurance Regulations, Laws and Statutes.
• Decisions & Making Choices - Web section contains information of Informed Decision Making, Assent-Consent, Guardianship, Living Wills and Advance Directives.
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Resources
HRTW Portal - Laws that Affect CYSHCN http://www.hrtw.org/tools/laws_leg.html
• The Term Special Health Care Needs or Disability
• Disability Rights Portals
• Education Issues
• Employment & Disability
• Equal Opportunity Access (504, 508 & ADA)
• Family Medical Leave Act
• HRSA/MCHB – Title V Legislation
• Health Insurance Benefits
• SSI/SSDI
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ADOLESCENT HEALTH TRANSITION PROJECT Washington
http://depts.washington.edu/healthtr/index.html
• Transition Timeline for Children and Adolescents with Special Health Care Needs. Transitions involve changes: adding new expectations, responsibilities, or resources, and letting go of others. The Timeline for Children may help you
think about the future.
• Working Together for Successful Transition: Washington State Adolescent Transition Resource Notebook - Great example to replicate.
• Adolescent Autonomy Checklists
Resources
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Resources
• HEALTH AND HEALTHCARE IN SCHOOLS http://www.healthinschools.org/ejournal/2003/privacy.htm
• The Impact of FERPA and HIPAA on Privacy Protections for Health Information at School. Sampling of the questions from school nurses and teachers.
• NICHCY - National Dissemination Center for Children with Disabilities www.nichcy.org
• Materials for families and providers on: IDEA, Related Services and education issues – in English/Spanish
• Section 504 http://www.ed.gov/about/offices/list/ocr/504faq.html
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GOT DATA!
www.cshcndata.org
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www.familyvoices.org
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www11.georgetown.edu/research/gucchd/nccc
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www.hdwg.org/catalyst/index.php
State-at-a-GlanceChartbook onCoverage and Financingof Care for Children andYouth with Special Needs
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Medicalhomeinfo.org
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http://www.championsinc.org