Transition to Adulthood:

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Transition to Adulthood Improving Outcomes by
Preparing for Changing Roles (Families, Youth
their Docs too!)
Patti Hackett, MEd Co-Director, HRTW National
Resource Center Natick, MA 10th Annual Chronic
Illness and Disability Transition from Pediatric
to Adult-based Care Houston, TX Nov 5-6, 2009
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About Me.and . YOU

• Ideas Speak too fast tell me ?
  Patti
• Have a question, ask
  it
• Promise Agree / Disagree
• Ah ha!
• Squirm ? Patti
• About YOU Experts in the Room
  Specialist
• Youth/Young Adults
  Dentist
• Teachers
  OT/PT
• Voc Rehab Counselors
  Mental Health
• School Nurses
  Social Workers

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www.hrtw.org
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Health Care Transition
Yeah thats the title but what are YOU
really thinking?

"Taking the F (fear) out of Health Care
Transition for CYSHCN The KSAs of Essential
Health Care Transition Skills Transition to
Adulthood is the Ultimate Outcome
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Objectives in Operational/ Behavioral Terms

• PART 01 The learner will state the rationale
  behind the importance of addressing and
  acknowledging anxieties and fears of families
  before teaching transition skills that are
  transferable to youth.

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Objectives in Operational/ Behavioral Terms

• PART 02 The learners will be able to identify
  what the data says AND differences between KSAs
  - Knowledge, Skills and Abilities as they relate
  to preparing for practice and mastery of
  essential skills for Health Care Transition to
  Adulthood for CYSHCN

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• Qs, As, Sharing?

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Hmmmm. Reactions? Discussion First
thoughts?
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H A C K E T T M A N T R A No. is just the first answer waiting on better info and contact with person who has the power for change. If not NOW then when? If not YOU than who? What have you got to lose? Whats it in for ME for them? Focus on solving the problem not why its not working now. Data says we have to change.
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Jedi Master, Yoda What are we saying NO to?
DO or NOT DO, there is no try.
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• Qs, As, Sharing?

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• Automatic Knowledge
• Price of Gasoline?
• Who are the World Series Champs?
• Time of favorite TV show?
• First thing you do in the morning?
• Bank PIN

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Mastery, Automatic Response, Routine Yup, Its
About YOU!

• Health Wellness Baseline Know Yours?
• How does your body feel on a good day?
• What is your typical
• - body temperature
• - respiration count
• - elimination habits?
• - quality of skin
• (front and back, ck butt 2x a yr)

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3 Qs Checking YOUR comfort zone Can Do Wants to Needs to Learn Someone else will have to do this for my child
1. My child carries their own health insurance card
2. Before a doctors appointment my child prepares written questions to ask.
3. My child co-signs the permission for medical treatment form (with or without signature stamp, or can direct others to do so)
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HANDOUT Health Wellness 101 The
Basics Transitions Changing Roles For
Families Transitions Changing Roles For
Youth Qgt How could YOU use this tool?
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Time Jan 2004
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Societal Context for Transition for Youth
without Medical Conditions

• Parents are more involved - dependency
• Helicopter Parents Blackhawk types(CBS 2007)
• Twixters 18-29
• - live with their parents / not independent
• - cultural shift in Western households - when
  
• members of the nuclear family become adults,
  
• are expected to become independent
• How they describe themselves (ages 18-29)
• 61 an adult
• 29 entering adulthood
• 10 not there yet
• (Time Poll, 2004)

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What are we saying NO to? The opportunity to TRY To fail, learn and to try again
You cant do it as well as I can
I dont want you to get hurt.
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• Qs, As, Sharing?

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Part 01 Outcomes Skills Needed
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• OUTCOMES Its time for radical change
• SKILLS Life-span management takes
  time
• SKILLS Preparing to See Adult
  Doctors
• KNOWLEDGE Maintaining Health Insurance
• KNOWLEDGE SKILLS Taking Charge

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Personal Journey Growing Up Ready To Live

• Dream, Dx, New Dream
• Hope vs Reality
• Seeing Modeling Success
• Launch the Why not lets do spirit
• OBJ State the importance of self
  differentiation,
• how to facilitate
  self-determination, and
• promote/practice life span skills
  that
• impact sustaining employment

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Growing Up Ready to Have Fun! Putting LIFE
on the front burner the Dx on the back
burner Not can we but .how do we
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Growing Up As individuals Different
personalities Different Dreams Same Dx but
different
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Growing Up Completing college
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Mac Graduated from High School Has been working for 18 Moved from parents home age 21 Takes a vacation out of state every year Was engaged for 5 years Single again and looking
Glen Graduated from High School Attended Univ of FL GO GATORS 3 jobs at the same (with 2 different employers 1 self-employed) Hanging out with the buds Sat. AM talk radio show KY in May and NY in June Red Sox fan
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Dx School Rec VR Job Apt Dating Love Sexuality
Mac Birth CP Seizures DD CI Speech Aging Issues YES K IEP Neighbor Hood Gr K-12 Age 6-21 YES Biking Walking Bowling Basketball YES Job coach YES Natural Supports YES YES YES was Engaged YES Adult videos
Glen 9 mos SMA Quad Terminal Tube fed Deteriorate Dies 4 x returns 3 x Vent - age 28 Dies - age 30 YES K 504 Peers Inclusion College Go Gators YES Bowling Score-keeper Tball Manager Football Bball Baseball Horses YES Client Ready Laptop AT-Voice YES Yard Sale in Locker Writer Radio Show Handicapper NO Sep Tele-work areas PAS NO YES All the time YES Adult videos Adapted Masturb.

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Growing Up Ready to Have Fun! Community
Inclusion Manager of the Team Buddy with Capt
of the Team
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Growing Up Ready for LOVE
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• Growing up ready for work.. vacation

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Growing Up Ready to try new things!
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Growing Up Ready to Make - and Pay Taxes
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Growing Up and are Adults
Health Wellness . Humor
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Part 02 Changing Roles Skills Needed
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Outcome 6 Youth with special health care needs
who receive the services necessary to make
appropriate transitions to adult health care,
work and independence -- CYSHCN ages 12-17 only
(derived)
NO 62.9
YES 37.1
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CHANGING PERSPECTIVES - 01

• What are your first thoughts about transition for
  your child/youth?
• Thinking again from another point of view, how
  else can you describe this emotion, the fears,
  the anxieties, where are you confident or not?

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CHANGING PERSPECTIVES - 02

• What are the fear and anxieties that
• delay the start of transition?
• How does looking at a different perspective
  promote movement forward?

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Question C6Q0A    Have CHILD'S NAME's doctors
or other health care providers talked with you or
CHILD'S NAME about his/her health care needs
as he/she becomes an adult?
                                                  
                                                  
                                                  
                                                  
          

NO 58.9
YES 41.1
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Informed Decision Makers

• FERPA Family Education Rights Privacy Act
• HIPAA Health Insurance Portability and
• Accountability Act
• 1. Privacy ? Records
• 2. Consent ? Signature (signature stamp)
• - Assent to Consent
• - Varying levels of support
• - Stand-by (health
  surrogate)
• - Guardianship (limited to
  full)

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Screen for All Health Needs

• Hygiene (look good, feel good, smell good)
• Nutrition (Stamina, Bowel Management, obesity,
  etc.)
• Exercise (fitness and stamina)
• Sexuality Issues (masturbation, STIs, GLBTQ/Twin
  Spirits)
• OB-GYN (Routine care, Birth Control, Rape)
• Mental Health (genetic, situational)
• Routine (Immunizations, Blood-work, Vision,
  Dentist, etc.)

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Transition Post-School Outcomes

• Employment and job training ? Health
• Post-secondary education ? Health
• Independent/home living ? Health
• Community Life ? Health
• Leisure and recreation ? Health
• What is Wellness?
• "You cannot educate a child who is not healthy,
• and you cannot keep a child healthy who is not
  educated."
• JOCEYLN ELDERS

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Question  (C6Q0A_B) Have they (child's doctors
and other health care providers) talked with you
about having CHILD'S NAME eventually see
doctors or other health care providers who treat
adults?
NO 41.9
YES 12
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Internal Medicine Nephrologists (N35)
Survey Components Percentages
Percent of transitioned patients lt 2 in 95 of practices
Transitioned pats. came with an introduction 75
Transitioned patients know their meds 45
Transitioned patients know their disease 30
Transitioned patients ask questions 20
Parents of transitioned patients ask questions 69
Transitioned Adults believed they had a difficult transition 40
Maria Ferris, MD, PhD, MPH, UNC Kidney Center
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• Question  (C6Q0A_E) Has anyone discussed
  with you how to obtain or keep some type of
  health insurance coverage as CHILD'S NAME
  becomes an adult?

                                                  
                                                  
                                                  
                                                  
          
Not necessary??? 35.6
NO 45
YES 19.3
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Maintaining Private Health Insurance
- Extended the age of dependent coverage POST age 18 with/without disabilities. Unmarried, childless young adult, most require student status (20 states)
age 24 DE, IN, SD
age 25 CO, ID, ME, MD, MT, NM, RI, TX, VA, WA, WV
age 26 CT, MA, NH, UT
age 30 FL, NJ, SD employer option
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• Summary of House Health Reform Bill -November 2,
  2009 Community Catalyst
• http//www.communitycatalyst.org/doc_store/publica
  tions/House_health_reform_bill_summary_11-2-2009.p
  df
• requires health plans to allow young people
  through age 26 to remain on their parents policy

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Michelles Law (October 9, 2009) Medical
Leave

• House Bill 2851 (HR 2851), otherwise known as
  Michelles Law, is a federal law that requires
  health plans and issuers of health insurance
  coverage to continue coverage for college
  students who are forced to take a leave of
  absence or change their enrollment status due to
  a serious illness or injury.
• This law applies to fully insured and
  self-funded (ERISA and non-ERISA) Group and
  Individual medical, pharmacy, behavioral health
  and, when part of the health plan, dental and
  vision coverage.

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Maintaining Private Health Insurance
Adult disabled dependent coverage (unable to work, often DD, physical disabled (38 states)
AZ, AR, CA, CT, FL, GA, HI, ID, IL, IN, LA, ME, MD, MA, MI, MN, MS, MT, NE, NH, NJ, NM, NY, NC, ND, OH, OR, RI, SC, SD, TN, TX, UT, VT, VA, WA, WI, WY
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Maintaining Private Health Insurance
Qualified Medical Child Support Order (QMCSO) ERISA-covered health plan to provide health benefits coverage to children by issuing a medical child support order TX YES!
Divorce Decree, Support - Adult Disabled Children TX YES! 17 states DO NOT have mandate AL, CT, DC, KS, ME, MI, MA, MI, MT, NE, NJ, RI, SD, TN, VT, WV, WI
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Maintaining Public Health Insurance
Medicaid automatic with SSI TX YES! 209 B states (11) NOT automatic CT, HI, IN, IL, MN, MO, ND, NH, OK, OH, and VA
Medicaid WAIVERS, Work Incentives Buy-in Ticket to Work 43 who enrolled in the Buy- in left for at least a year at some point 22 of individuals who left the program had no immediate access to Medicaid or Medicare.
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Question  (C6Q08) How often do CHILD'S NAME's
doctors or other health care providers encourage
him/her to take responsibility for his/her
health care needs?

Always 49.3
Never 11.8
Sometimes/Usually 38.9
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Youth are Talking Are we listening?

• Survey - 1300 YOUTH with SHCN / disabilities
• Main concerns for health
• What to do in an emergency,
• Learning to stay healthy
• How to get health insurance,
• What could happen if condition
• gets worse.
• SOURCE Joint survey - Minnesota Title V CSHCN
  Program and the PACER Center, 1995
• SOURCE National Youth Leadership Network
  Survey-2001
• 300 youth leaders disabilities

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• FAMILIES Prepare for Changing Roles
• Temporary spokesperson on behalf of minor child
• (until age 18, or declared by the court)
• - 2 voices to be heard families and CY
• - Circle of Support
• - Assent to Consent
• handout Changing Roles

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• FAMILIES Prepare for Changing Roles
• Self-Differentiation is a progressive, internal
  
• interplay between autonomy (separation)
• and connection (togetherness) while
  progressing
• toward developing and known goals.
• SOURCE http//rodesmith.com/2006/03/25/bowen-dif
  ferentiation/

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• TOOL Promote
• Individual
• Families
• - protective
• Children / Youth
• - being visible
• - community aware
• be in charge
• of something

• Simple Acts ..BIG Returns
• Role in the family
• - Grocery Store
• - Nightly Charge Wheelchair
• - Get Family Mail /sorting
• - Medications pill box
• - 3 indicators on Rx bottle

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Skills Before10 Before 18
Carry and present insurance card X
Know wellness baseline, Dx, Meds X X
Make own Doctor appts X
Call in Rx refills X
Learning Choice X
Decision making (assent to consent) X
Prepare for Doc visit 5 Qs X X
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Skills Before10 Before 18
Carry and present hand held Portable medical summary 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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• Handout Portable Medical Summary
• Carry 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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• Handouts
• Handout- Handheld Portable Medical Summary
• TOOL Poly Pharm Form
• Policy Brief NSCET Health IEP
• Handout- Health SOP checklist
• Handout- My Five Wishes
• Handout- Sexuality Resources
• Handout- NAMI-List Before Selecting a College
• Policy Brief Signing Forms

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Jedi Master, Yoda What are we saying NO to?
DO or NOT DO, there is no try.
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Action Plan I Did It!
7 days - Step 1 In one week I will commit to do
30 days - Step 2 By next month I will commit to do
90 days - Step 3 In three months I will commit to do
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• Thanks!

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www.familyvillage.wisc.edu
www.familyvillage.wisc.edu/
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www.fvkasa.org
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??? NYLN
www.nyln.org/
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www.ncwd-youth.info/index.html
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www.familyvoices.org
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www11.georgetown.edu/research/gucchd/nccc
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infanthearing.org
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Medicalhomeinfo.org
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www.hdwg.org/catalyst/index.php
State-at-a-Glance Chartbook on Coverage and
Financing of Care for Children and Youth with
Special Needs
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http//www.championsinc.org
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www.hrtw.org