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 livelydiscussion 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, MEdCo-Director
Mallory H. CyrYouth Coordinator
Ceci Shapland, RN, MSConsultant-Family Partnerships
Maine Integrative Services GrantAnna H. Cyr
Augusta, MEOctober 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
1.Youth Involvement
2.Secondary Disabilities
3.Peds to Adult
4.Extend Dependent Coverage
5.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
1. Identify primary care provider
2. Identify core knowledge and skills
3. Knowledge of condition, prioritize health issues
4. Maintain an up-to-date medical summary that is portable and accessible
5. Apply preventive screening guidelines
6. 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 PaternalisticProactive
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
Got Data?
www. cshcndata.orgData Resource Center National Survey for CSHCN
Nov.2007
NS-CSHCN 2005Section 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 2005Section 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?
Never11.9%
Sometimes16.3%
Usually23.0%
Always48.7%
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 HomesN=52
in 26 states
NACHRIHospitals
N=19 in 18 states
StatesN=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 Health Care Transition ActivitiesTransition Activities
Medical HomesN=5226 states
NACHRIHospitalsN=19 18 states(12%)
Shriners HospitalsN=20 15 states & Canada (91%)
State Title V AgenciesN=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:
1 Career development (develop skills for a job and how to find
out about jobs they would enjoy)
2 Independent living skills
3 Finding quality medical care (paying for it; USA)
4 Legal rights
5 Protect themselves from crime (USA)
6 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-2001300 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
41
Percentage of adults ages 19–29 reporting going without various services because of cost, by
health insurance status: 2005
38% 37% 35%
45%
57%
17%12% 11%
18%
31%
Fill prescriptions Necessaryspecialist visits
Medical test,treatment, or
follow-up
Doctor visit formedical problem
Any of theseservices
Uninsured Insured
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!
45
How many states cover non-categorical adults?
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
Sources: Klein and Schwartz, 2008; Dorn, et al., 2005. Note: comprehensive programs provide (a) benefitsat least as generous as typical ESI to (b) at least all adults up to 100% FPL.
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, MEdCo-Director, HRTW Center
Mallory CyrYouth Coordinator, HRTW Center
Sabattus, ME
Ceci Shapland, RN, MSNConsultant-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
??? NYLNwww.nyln.org/
www.ncwd-youth.info/index.html
www.familyvoices.org
www11.georgetown.edu/research/gucchd/nccc
Medicalhomeinfo.org
www.hdwg.org/catalyst/index.php
State-at-a-GlanceChartbook onCoverage and Financingof Care for Children andYouth with Special Needs
http://www.championsinc.org