Transcript Slide 1

Transitions: Growing Up Ready to Live!
The Ultimate Outcome: Transition to Adulthood
Josie Badger, BS
Vice President, NYLN
Wampum, PA
Nicholas C. Wilkie, MA
Transition Specialist
MCIL, St. Paul, MN
Patti Hackett, MEd
Co-Director
HRTW National Center
Medical Home Promising Practices Forum
Bethesda, MD
June 24-25, 2008
Sometimes Independence
Takes a Team
Future
Quality
of Life
Planning
Ahead
Skills
Growing Up Ready to LIVE!
Health & Wellness …. + Humor
The Ropes
• Healthcare is like a rope
sometimes you need a few knots in the rope
before it frays apart
• The pediatric and adult healthcare systems
have two separate and not equal ropes
The Pediatric Rope
• The rope has different strands in the braid
–
–
–
–
Doctors
Hospitals
Supports
Services
• Each strand contributes to the strength
– Need all to work together for a complete
environment of support
The Fray in the Rope
• The ends sometimes come apart
– New health concerns
– Change of doctors
– Loss or change in health insurance
• The other strands must carry the weight
– Are the other strands well informed?
– Do you know your child’s needs?
– Do you know where to find the information and
supports?
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….
Big Questions
• Your life to look in a year, or five years?
• Actions to make this come true?
• What school do you want to go to
• What job do you want to have?
• What do you want to do for fun
• Who do you want along with you?
Youth are Talking: Are we listening?
Main concerns for health they need to address:
• What to do in an emergency,
• Learning to stay healthy*
• How to get health insurance*
• What if condition gets worse.
SOURCES: Joint survey – Minnesota Title V CSHCN Program
and the PACER Center, 1995
1300 YSHCN
*National Youth Leadership Network Survey-2001
300 youth leaders disabilities
Living Your Life
• Begins by Making Choices
• Being Assertive
• Use these skills when or at:
- IEP meetings
- talking with family and friends
- Doctor, Dental appts
• CILs teach skills in Leadership, Self-Advocacy &
Independent Living Skills
CORE National Performance Measures
Transition & ………
1. Family
1.Youth Involvement
2. Screening
2.Secondary Disabilities
3. Medical Home
3.Peds to Adult
4. Health Insurance 4.Extend Dependent Coverage
5. Community
5.Entitlement to Eligibility
6. Transition
6. Inclusion in Community
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
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
1. Identify primary care provider



Peds to adult
Specialty providers
Other providers
SOURCE: Pediatrics 2002:110 (suppl) 1304-1306
NICK’s Situation:
Thought I was done… experiences told me that
Searching still…
• Numerous questions and concerns
• Cerebral Palsy and Aging needs to be tracked
• Condition is static, but my age is not
• Preventative care is a priority!
Josie’s Status
• As established as possible
• Still trying to find doctors/specialists that are
willing to “play well together”
• Still juggling how to manage “minor problems”
with university physicians
• Continuous changing health status
- Chronic
- Pulmonary
- Dx
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
2. Identify core knowledge and skills

Encounter checklists

Outcome lists

Teaching tools
HRTW TOOLs
Checklist for Transition:
• Core Knowledge & Skills
for Pediatric Practices
• Changing Roles for Youth
• Changing Roles for Families
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
3. 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
SOURCE: Pediatrics 2002:110 (suppl) 1304-1306
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
CIL Role in Applications:
CILs
• have staff trained members to assist with
application processes
• assist with organization and planning practices
to make connections for eligibility purposes
• provide Information and Referral Services
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
4. 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 and community
resources
SOURCE: Pediatrics 2002:110 (suppl) 1304-1306
The Path of Least Resistance
is Not always The Path of Most Benefit
• Learn advocacy early
• Create mutual relationships in the health field
• Transfer responsibility
• Support in medical decision making
Health Care Transition Plan
• YOUTH INVOLVEMENT (Skills, practice & time)
- How to involve the young person in
introducing, creating and participating in that
plan
• UPDATE PERIODICALLY
- Partnership – youth, family and provider
Plan is assessed periodically and changes are
made when needed (interests, medical, etc)
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
5. Apply preventive screening guidelines



Stay healthy
Prevent secondary disabilities
Catch problems early
SOURCE: Pediatrics 2002:110 (suppl) 1304-1306
Screening
SECONDARY DISABILITIES
- Prevention/Monitor
- Mental Health
- High Risk Behaviors
AGING & DETERIORATION
- Info long-term effects (wear & tear; Rx, health cx)
- New disability issues & adjustments
Screen for All Health Needs
• Hygiene
(look good, feel good, smell good)
• Nutrition
(Stamina, Bowel Management, obesity, etc.)
• Exercise
(fitness and stamina)
• Sexuality Issues
• OB-GYN
(Routine care, Birth Control, Rape)
• Mental Health
• Routine
(masturbation, STIs, GLBT)
(genetic, situational)
(Immunizations, Blood-work, Vision, etc.)
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
6. Ensure affordable, continuous
health insurance coverage


Payment for services
Learn responsible use of resources
SOURCE: Pediatrics 2002:110 (suppl) 1304-1306
TICKET TO WORK
http://www.socialsecurity.gov/work/aboutticket.html
• Employment Network (EN) of their choice to obtain
employment services, vocational rehabilitation services,
or other support services to help the beneficiary find
and maintain employment
MEDICARE (SSDI)
• Premium-free coverage for 4.5 years beyond the
current limit for disability beneficiaries who work.
Medicaid (SSI)
• Most States have the option of providing Medicaid
coverage to more people between the ages of 16-64
with disabilities who work.
Disability Program Navigator Functions
- One-Stop Career Centers
• outreach and provide direct services to people with
disabilities (PWD)
• prepare for, find, or retain employment by collaborating
with mandated and non-mandated WIA partners and
agencies.
• coordinator on SSA work incentives:Ticket to Work,
linkages to SSA field offices, SSA Benefits Planning,
Assistance and Outreach (BPAO) counselors, and
Employment Networks.
• Assist beneficiaries in understanding the effects
of earnings on SSA and other program benefits.
Extended Coverage – Family Plan
1. Adult Disabled Dependent Care
(40 states)
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
2. All Youngs Adults, 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
What
does the
Data
tell us?
Natl CSHCN 2005-06
HRTW 2004-07
Youth – MN 1997
Youth – NYLN 2003
Got Data?
Data Resource Center National Survey for CSHCN
www. cshcndata
.org
Nov.
2007
NS-CSHCN 2005
Section 6: Family Centered Care - Transition Qs
If YES, have they talked with you about having
49.3% [CHILD’S NAME] eventually see doctors or
other health care providers who treat
NO
adults?
53.8% Have [CHILD’S NAME]’s doctors or other health
care providers talked with you or [CHILD’S NAME]
NO
about his/her health care needs as he/she
46.2% becomes an adult?
YES
NS-CSHCN 2005
Section 6: Family Centered Care - Transition Qs
Eligibility for health insurance often changes
78.7%
as children reach adulthood. Has anyone
NO
discussed with you how to obtain or keep some
type of health insurance coverage as
NAME] becomes an adult?
Never
11.9%
Sometimes
16.3%
Usually
23.0%
Always
[CHILD’S
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?
What
does the
Data
tell us?
Natl CSHCN 2005-06
HRTW 2004-07
Youth – MN 1997
Youth – NYLN 2003
Barriers to Transition *
rated extremely important or
very important (combined)
HRTW Questionnaire 2006-2007
Lack of capacity of adult
providers to care for
youth/adults with SHCN
Lack of understanding of
reimbursement eligibility
differences between adults
and children with special
health care needs
Fragmentation of care
among systems providers
Lack of knowledge about or
linkages to community
resources that support youth
in transition
Medical
Homes
NACHRI
Hospitals
States
N=42 of 59
N=52
in 26 states
N=19
in 18 states
States/
Territories
83%
85%
95%
65%
63%
Not Asked
87%
73%
89%
85%
58%
50%
Health Care
Transition Activities
Create an
individualized health
transition plan
Promote health
management, self
care, and prevention
of secondary disab.
Discuss legal
responsibility for
medical decisions and
health records <18.
Recruit adult primary
/specialty providers to
assume care of youth
with special needs
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%)
34%
43%
25%
50%
63%
79%
95%
72%
21%
58%
100%
62%
56%
58%
35%
53%
Written
81%
assent
Evaluation
Moving to Community-Based Systems of Care: Issues for States
Planning for cohorts of YSHCN
becoming adults:
•
Sending System: Preparing families, youth
and professionals - envisioning adulthood
•
Receiving System: Different expectations,
programs, rules and regulations
•
ONE Plan for Collaboration across systems
in the community: health, education, work,
housing, transportation, technology, play
Measures
Medical Home with Transitions & …
- Screening
Prevention Secondary Disabilities
- Family/Youth
- Health Insurance
- Community Services
Activated Patient
Maintaining Coverage
Capacity
Consensus Statement: Health Care Transition
Critical First Steps to Ensuring Successful Transitioning
To Adult-Oriented Health Care
1. Identify primary care provider
2. Identify core knowledge and skills
3. Maintain an up-to-date medical summary that is
portable and accessible
4. Create a written health care transition plan by age 14:
what services, who provides, how financed
5. Apply preventive screening guidelines
6. Ensure affordable, continuous health insurance
coverage
SOURCE: Pediatrics 2002:110 (suppl) 1304-1306
NCQA -Physician Practice Connections
practical tool that assesses an ambulatory practice's use of the
Chronic Care Model, and work with GE in the early stages of the
Bridges to Excellence incentive program using the Six Sigma
approach to identify errors in office practice.
•
•
•
•
•
•
•
Office Practice Workflow (MCHB)
Patient Access (MCHB, HRTW)
Patient Education (MCHB, HRTW)
Office Electronic Data/systems
Office HER
Office E-Registry
Office E-Prescribing
National Quality Forum
Transitions Measurement and Evaluation
hospital transitions
Q> Could this work for primary care/
sub specialist and ped to adult transitions?
- Patient level
- Process of Care
- Cost and resource use across episode
Next slides
red = fit with HRTW and Consensus Statement
NOF Transitions Measurement and Evaluation
Patient Level
• Morbidity and mortality
(consensus statement: use of GAPs, etc)
• Functional status
• Health related quality of life
• Patient experience in care
(HRTW screening tools help youth/parents
know what to expect)
NOF Transitions Measurement and Evaluation
Process of Care
• Technical (IT-electronic med records, etc)
• Care coord
Identify care coord
• Decision support
medical record, skill set, transition plan
Additional Professional level eval from HRTW:
Processes needed to make the
transition process successful in practice
-HRTW forms and screening tools
NOF Transitions Measurement and Evaluation
Cost and resource use across episode:
• Total cost of care
• Opportunity costs to patients
continuous source of health insurance
Final Thoughts
You Have The Right To Be Heard
But you also have responsibilities
Responsibilities:
• Know about your disability and be able to talk
to other people about your disability and health
needs.
• Prepare to participate in team meetings and
make sure that everyone is aware of your
feelings.
• Need to be able to talk about your wants,
needs, and goals.
YOUR RIGHTS:
• To have a say in your future & YOUR LIFE
• To be treated fairly
• To have your feelings, thoughts and wants
taken SERIOUSLY
• To be involved your IEP, medical treatments,
and transition plans (educational & medical)
Skills
Before
10
• Carry and present insurance card
X
• Know wellness baseline, Dx, Meds
• Make own Doctor appts
X
• Call in Rx
• Learning Choice
Before
18
X
X
X
X
• Decision making (assent to consent)
X
• Prepare for Doc visit: 5 Qs
X
X
• Present Co-pay
• Assess: Insurance, SSI, VR
X
X
• Gather disability documentation
X
X
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
Tie a knot to create a continuous rope
The pediatric rope
should transition
into the adult rope
Josie Badger
[email protected]
Nicholas C. Wilkie
[email protected]
Patti Hackett
[email protected]
[email protected]
www.hrtw.org
www11.georgetown.edu/research/gucchd/nccc
Medicalhomeinfo.org
www.hdwg.org/catalyst/index.php
State-at-a-Glance
Chartbook on
Coverage and Financing
of Care for Children and
Youth with Special Needs
http://www.championsinc.org