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  • ROOM SET UP Put packets on chairs Handout our CHANGING ROLES handouts – AND – post it notes for QUESTION LOT
  • PATTI slide
  • MAL – do the bullets, ok to say that Patti will make you squirm We will: Confirm what you already know Give you an a-ha moment of something you might not have known before Make you a little bit uncomfortable. And provide you with some action steps to take away with you, and the right to disagree with anything we say. Every case is different! PATTI – purple box which is a pop up
  • PATTI slide – about Virtual Teaming and HRTW Team states: DC, CT, KY, MD, MN, NM, TN and this yr Lataiva and Sweden
  • Patti slide
  • Patti slide
  • MAL slide Importance of Maintaining Health Insurance after age of majority age 18 HRTW promotes to continue coverage of the YOUTH on their parents’ Family Plan wherever possible. This next section will talk about the new legislation that Maine has passed last year for private insurance. Many youth at age 18 will qualify for SSI and in the state of Maine this also means automatic Medicaid, which is publicly funded program. Like anything there are some advantage and disadvantages. Just keep in mind not all physicians and services accept Medicaid. So one of our goals is to share information and tools how to maintain private insurance whenever possible. And Yes you can have private insurance and Medicaid too!
  • PATTI slide
  • PATTI slide Options to think about before the youth is 17
  • PATTI slide MAL – ok to comment after I set it up
  • PATTI slide MAL – ok to comment after I set it up
  • PATTI slide MAL – ok to comment after I set it up HANDOUT: guidelines for WOMEN and MEN
  • PATTI slide Ok Mal to comment after I set up issues
  • PATTI slide
  • PATTI slide MAL – ok to comment after I set it up HANDOUT: Portable Medical Summary
  • PATTI slide MAL – ok to comment after I set it up HANDOUT: Portable Medical Summary
  • PATTI slide MAL – ok to comment after I set it up HANDOUT: Portable Medical Summary
  • CLOSING PATTI – contact info MAL – contact info
  • PATTI slide
  • MAL KASA
  • MAL NYLN
  • MAL National Collaborative on Workforce and Disability for Youth Employment for Youth with disabilities
  • PATTI
  • PATTI
  • PATTI
  • PATTI

ppt ppt Presentation Transcript

  • Welcome ….. Before We Start
    • Handout: Changing Roles
    • - Fill in
    • Post It Notes “Question Lot”
    • your name, email, Q, topic, expertise
    • -What question do you want to ask?
    • -What expertise do you have and can share?
    • What does it take to become independent? Join a lively
    • discussion of the information and skills youth need to be on their own and how to prepare youth for this important step.
    • Lively Discussion:
    • What is On Your Mind?
    • Burning Questions :
    • Need answers & Resources
    • Experts in the Room
    • Resources post conf
    • Solution Network
    About YOU
    • 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)
    Do you have “ICE” in your cell phone contact list? To Program……….
  • Imagine the Possibilities….
  • Transition to Adulthood
  • Transition & ……Family
  • During the next 90 min. we will .....
    • Affirm your beliefs
    • Ah Ha Moments!
    • Make You Squirm
    • Tools to Use
    • Choose to Disagree
    You are advocates with skills Your skills are for certain time frames Now is the time to learn the next set of skills
  • Transitions: Growing Up Ready to Live! The Ultimate Outcome: Transition to Adulthood HRTW National Resource Center Team Patti Hackett, MEd Co-Director Mallory H. Cyr Youth Coordinator Ceci Shapland, RN, MS Consultant-Family Partnerships Maine Integrative Services Grant Anna H. Cyr Augusta, ME October 22, 2008
    • Part 01 – Overview
    • National Data, Federal Policy
    • Part 02 – Preparing for the Difference:
    • Roles for Providers,
    • Family and Children/Youth
    • Part 03 - Tools for Providers,
    • Family and Children/Youth
    • Part 04 – Discussion:
    • Putting Ideas Into Practice:
    • Your Strategies – Making it Work
  •  
  • www.hrtw.org
  • 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 .
    • 1. What do you remember about your teen years and health care
    • 2. When did you leave your pediatrician and move to an internist? Your own child?
    • 3. Have you had experience in assisting a youth with a disability moving to adult systems?
    • Part 01 – Overview
    • National Data, Federal Policy
    • Part 02 – Preparing for the Difference:
    • Roles for Providers,
    • Family and Children/Youth
    • Part 03 - Tools for Providers,
    • Family and Children/Youth
    • Part 04 – Discussion:
    • Putting Ideas Into Practice:
    • Your Strategies – Making it Work
    • “ Children and youth with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”
    • Source: McPherson, M., et al. (1998).
    • A New Definition of Children
    • with Special Health Care Needs.
    • Pediatrics. 102(1);137-139.
    • http://www.pediatrics.org/search.dtl
    Who Are CYSHCN?
  • Disabled?? Special Health Care Needs?
    • <18 -- HEALTH SERVICES CYSHCN
    • - Children & Youth with Special Health Care Needs
    • - Genetic
    • - Chronic Health Issues
    • - Acquired
    • >18 -- Adult
    • - Person with Disability
    • - Person with Health Impairment
    • ADA
    • - Civil Rights
  • Outcome Realities
    • Nearly 40% of youth with SHCN cannot identify a primary care physician
    • 20% consider their specialist to be their ‘regular’ physician
    • Primary health concerns are not being met
    • Fewer work opportunities, lower high school grad rates and increased 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
  • CORE National Performance Measures
    • Transition & ………
    • 1. Family
    • 2. Screening
    • 3. Medical Home
    • 4. Health Insurance
    • 5. Community
    • 6. Transition
    • Youth Involvement
    • Secondary Disabilities
    • Peds to Adult
    • Extend Dependent Coverage
    • Entitlement to Eligibility
    • 6. Inclusion in Community
  • HRSA/MCHB Block Grant : NPM #6
    • Transition to Adulthood
    • Youth with special health care needs
    • will receive the services necessary to make transitions to
    • all aspects of adult life, including adult health care, work,
    • and independence. (2002)
    • SOURCE: BLOCK GRANT GUIDANCE
    • New Performance Measures See p.43 ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf
    • Identify primary care provider
    • Identify core knowledge and skills
    • Knowledge of condition, prioritize health issues
    • Maintain an up-to-date medical summary that is portable and accessible
    • Apply preventive screening guidelines
    • Ensure affordable, continuous health insurance coverage
    • Pediatrics 2002:110 (suppl) 1304-1306
    A Consensus Statement 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
    • Part 01 – Overview
    • National Data, Federal Policy
    • Part 02 – Preparing for the Difference:
    • Roles for Providers,
    • Family and Children/Youth
    • Part 03 - Tools for Providers,
    • Family and Children/Youth
    • Part 04 – Discussion:
    • Putting Ideas Into Practice:
    • Your Strategies – Making it Work
    • What would you think
    • a group of “successful”
    • adults with disabilities
    • would say is the most
    • important factor
    • that assisted them
    • in being successful?
    6 Choices
  • 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
  • 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
  • Time Jan 2004
  • Societal Context for Youth without Medical Conditions in Transition
    • 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)
    • 3. What is transition?  
    • 4. Who needs transition planning?
  • 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 worlds …… .that often do not communicate….
  • What is Health Care Transition?
    • Components of successful transition
    • Self-Determination
    • Person Centered Planning
    • Prep for Adult health care
    • Work /Independence
    • Inclusion in community life
    • Start Early
    Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals.
  • Pediatric Adult Age-related Growth& development, future focussed Maintenance/decline: Optimize the present Focus Family Individual Approach Paternalistic Proactive 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
  • What does the Data tell us? Natl CSHCN 2005-06 HRTW 2004-06 NC Neph 2005 Youth – MN 1997 Youth – NYLN 2003
  •  
    • NS-CSHCN 2005
    • Section 6: Family Centered Care - Transition Qs
    49.3% NO If YES, have they talked with you about having [CHILD’S NAME] eventually see doctors or other health care providers who treat adults? 53.8% NO 46.2% YES 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?
    • NS-CSHCN 2005
    • Section 6: Family Centered Care - Transition Qs
    78.7% NO Eligibility for health insurance often changes as children reach adulthood. Has anyone discussed with you how to obtain or keep some type of health insurance coverage as [CHILD’S NAME] becomes an adult? Never 11.9% Sometimes 16.3% Usually 23.0% Always 48.7%   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, such as:   IF 5-11 Years: learning about (his/her) health or helping with treatments and medications? IF 12+ Years: taking medication, understanding (his/her) health, or following medical advice?
  • Barriers to Transition * rated extremely important or very important (combined) HRTW Questionnaire 2006-2007 Medical Homes N=52 in 26 states NACHRI Hospitals N=19 in 18 states States N=42 of 59 States/ Territories Lack of capacity of adult providers to care for youth/adults with SHCN 83% 85% 95% Lack of understanding of reimbursement eligibility differences between adults and children with special health care needs 65% 63% Not Asked Fragmentation of care among systems providers 87% 73% 89% Lack of knowledge about or linkages to community resources that support youth in transition 85% 58% 50%
  • Health Care Transition Activities Medical Homes N=52 26 states NACHRI Hospitals N=19 18 states (12%) Shriners Hospitals N=20 15 states & Canada (91%) State Title V Agencies N=42 of 59 States/ Territories (71%) Create an individualized health transition plan 34% 43% 25% 50% Promote health management, self care, and prevention of secondary disab. 63% 79% 95% 72% Discuss legal responsibility for medical decisions and health records <18. 21% Written 81% assent 58% 100% 62% Recruit adult primary /specialty providers to assume care of youth with special needs 56% 58% 35% 53%
  • 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
    • 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
    Youth are Talking: Are we listening?
  • Maintaining Health Care Insurance
  • 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, 2003, 2005
  • Percentage of adults ages 19–29 reporting going without various services because of cost, by health insurance status: 2005 Source: Collins, et al., 2007.
  • 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, FL , ID, IN, IL, ME , MD, MA, MI, MT, NH, NJ , NM, OR, PA, RI, SD, TX, VT, VA, WA, WV
  • Handouts: Private Health Insurance
    • Maine Health Insurance Statute – up to age 25
    • Chapter 33:§2742-A. Extension of coverage for dependent children
    • Effective August 23, 2006
    • Dependent child; definition.  
    • A.  Is unmarried;
    • B.  Has no dependent of the child's own;
    • C.  Is a resident of this State or is enrolled as a full-time student at an accredited public or private institution of higher education; and
    • D.  Is not provided coverage under any other individual or group health insurance policy or health maintenance organization contract or under a federal or state government program.
  • Handouts: Private Health Insurance
    • Requires
    • An insurer may require, as a condition of eligibility for continued coverage in accordance with this section, that a covered person seeking continued coverage for a dependent child provide written documentation on an annual basis that the dependent child meets or continues to meet the requirements
    • Celebrate Annual Documentation!
  • How many states cover non-categorical adults? Sources: Klein and Schwartz, 2008; Dorn, et al., 2005. Note: comprehensive programs provide (a) benefits at least as generous as typical ESI to (b) at least all adults up to 100% FPL. 1115 waivers State-only funds Comprehensive 9 states : AZ, DE, HA, ME, MA, NM, NY, OR, VT 3 states : DC, MN, WA Less than comprehensive 12 states : AR, DC, IA, ID, IN, MD, MI, MO, MT, OK, TN, UT 1 state : PA
    • Part 01 – Overview
    • National Data, Federal Policy
    • Part 02 – Preparing for the Difference:
    • Roles for Providers,
    • Family and Children/Youth
    • Part 03 - Tools for Providers,
    • Family and Children/Youth
    • Part 04 – Discussion:
    • Putting Ideas Into Practice:
    • Your Strategies – Making it Work
    • Know Your Health & Wellness Baseline
    • 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)
    • Handout: Preventative Care: What Tests - When
  • 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 refills
    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
  • 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.
  • TOOLS - You can use by FRI!
    • Family/Youth
    • Changing Roles: Families
    • Changing Roles: Children & Youth
    • 5 Qs
    • - IADL reporting template
    •  
  •  
  • TOOLS - You can use by FRI!
    •  
    • Medical Home
    • Knowledge & Skills Checklist
    • - Portable medical summary
    •  
    • 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
  •  
  • TOOLS - You can use by FRI!
    •  
    • Transition - Making the Paperwork work!
    • sample VR letter
    • DME letter customized powered wheelchair
    • How do we tie a knot of transition
    • between pediatric and adult healthcare?
    • Start early
    • Teach advocacy to youth
    • Tell people where to find the other rope
    • Teach the strands to work together
    Reality check: Have all of us done the prep work for the send off before the hand off?
    • Tie a knot to create a continuous rope
    • The pediatric rope
    • should transition
    • into the adult rope
    • What would you do,
    • if you thought you could not fail?
  • Patti Hackett, MEd Co-Director, HRTW Center [email_address] Mallory Cyr Youth Coordinator, HRTW Center Sabattus, ME [email_address] Ceci Shapland, RN, MSN Consultant-Family Involvement Vadnais Heights, MN
    • Part 01 – Overview
    • National Data, Federal Policy
    • Part 02 – Preparing for the Difference:
    • Roles for Providers,
    • Family and Children/Youth
    • Part 03 - Tools for Providers,
    • Family and Children/Youth
    • Part 04 – Discussion:
    • Putting Ideas Into Practice:
    • Your Strategies – Making it Work
  • www.familyvillage.wisc.edu/ www.familyvillage.wisc.edu
  • www.fvkasa.org
  • ??? NYLN www.nyln.org/
  • www.ncwd-youth.info/index.html
  •  
  •  
  •  
  •  
  • http://www.championsinc.org