Transcript Slide 1

Future Of Pediatrics Conference 2009
Moving on from Pediatric to Adult Health
Care for Youth with Special Health Care
Needs: What a Health Care Professional
Can do
Patience H. White, MD, MA, FAAP
Health and Ready to Work National
Center, Washington, DC
March 1, 2009
Faculty Disclosure Information
In the past 12 months, we have no relevant financial
relationships with the manufacturer(s) of any commercial
product(s) and/or provider(s) of commercial services
discussed in this CME activity.
I do not intend to discuss an unapproved/investigative use of
a commercial product/device in this presentation.
Opening Questions
About your Transition
• Are you seeing an adult physician?
• If yes, what do you remember about your
adolescent/young adult years and health carewhen did you leave your pediatrician and
move to an adult health care provider?
• Was your health care continuous or was there
a gap?
• Did you leave actively or passively?
Learning Objectives
•
List the key elements of the national academies’
YSHCN and HCPs’ perspective on transition to
adult healthcare
•
Define the role of physicians and other care
providers/coordinators in the transition of youth
from pediatric to adult medical care.
Discuss use of transition tools from the Healthy
and Ready To Work (HRTW) website and other
national resources.
•
DEFINITIONS
Who Are CYSHCN?
“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.
How many CYSHCN need
transition planning?
Nationwide
10,221,439 (13.9%) <18
Title V CYSHCN
1,839,883 ( 0-18*)
SSI Recipients
953,295 ( 0-16)
Sources:
1.
www.cshcndata.org 2005-2006
2.
Title V Block Grant FY 2007, www.mchb.hrsa.gov
* Most State Title V CSHCN Programs end at age 18
3.
SSA, Children Receiving SSI, December 2007, www.ssa.gov
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
The Transition Process
Referral & Transfer of Care
Pediatric Care
Adult Care
Transition
SOURCE: Rosen DS. Grand Rounds: All Grown up and Nowhere to Go:
Transition From Pediatric to Adult Health Care for Adolescents With Chronic
Conditions. Presented at: Children’s Hospital of Philadelphia; Philadelphia, PA,
2003
What is Early?
• Data from studies in Europe and the US
suggest ages 11-13
– Youth most interested in involvement with future
career like their peer group without disabilities
– If intervene with transition planning, able to keep
them on developmental milestones compared to
those starting later
– Have least differences in standardized QoL and life
skills measures
– Youth > 14 years had bigger differences than peers
w/o disabilities and interventions show less
improvement
What
does the
Data
tell us?
What do
national
associations
say about
transition?
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?
IOM QUALITY MEASURES
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
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
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
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. Develop an individualized transition plan
5. Apply preventive screening guidelines
6. Ensure affordable, continuous health insurance
coverage
What
does the
Data
tell us?
What do youth
say they want
in transition?
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
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
What would you think
a group of “successful”
adults with disabilities
would say is the most
important factor
that assisted them
in being successful?
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
What
does the
Data
tell us?
How are
youth with
SHCN doing
in
adulthood?
Outcome Realities: Before the Recession
• 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
During and after the recession??????
CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002
What
does the
Data
tell us?
How prepared
are youth for
managing their
care in the
adult health
care system?
Internal Medicine Nephrologists (N=35)
Survey Components
Percent of transitioned patients
Transitioned pats. came with an introduction
Percentages
< 2% in 95% of practices
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 2006
What
does the
Data
tell us?
What do
Adult providers
say they want
to assist them
in receiving
youth w SHCN?
Survey of Adult Health Care
Providers in NH 2008: Results
• Who:180 responses: 81% Fam, 9% internist, 8% NP,
2% Med-peds
• Communication:
– 57-46% rarely/never received trans summary or call
– 48% young adult experienced care gap
• Barriers: time, staffing, reimbursement issues inadequate
support from specialists
• Comfort Level:
– More- asthma, inc BP, Mental health, DM
– Less- CF, Chromosome/met disorders, autism, technology dep
• What would Help:
– 95% written summary and support from specialists,
– 91% want to speak w prior provider,
– 84% written educational info about condition
• When Transfer: 78% between 18-21 years
What
does the
Data
tell us?
FAMILIES
Natl CSHCN
Survey 2005-06 of
families with
CYSHCN
2005-6 National Health Survey*
• National telephone Survey of 40,804 families with youth with SHCN under the age
of 18 found the following results:
• 48.8% of families with youth with SHCN ages 12-17 years stated their youth
received the services necessary to make appropriate transitions to adult health
care, work and independence.
• For those who answered yes, their HCP:
• 50.7 % talked about having their child eventually see health care providers who
treat adults
• 46.2% talked with them about the health care needs as their child becomes an
adult
• 21.3% discussed with them how to obtain or keep some type of health insurance
coverage as their child becomes an adult
• 48.7% always encouraged their youth to learn about their health and medications.
*www.cshcndata.com
What
does the
Data
tell us?
PED
PROVIDERS
2008 AAP
Periodic Survey
#71
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
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
AAP Periodic Survey #71 2008*
Results
• 47% assisted with a referral to family or internal medicine
• 45% Refer to adult specialists
• 33% discussed consent and confidentially issues prior to
age 18
• 32% Assist with finding a medical doctor
• 27% Create a portable medical record summary
• 23% offered education and consultative support to families
or adult providers
• 19% assisted in identifying insurance options after age 18
• 12% create an individualized health care transition plan
* For all or most of their adolescents
Barriers to transition care for
Pediatricians (both major and minor
barriers combined) :
• 88% lack of their knowledge of community resources
• 85% fragmentation of adult health care
• 84% lack of adolescent knowledge about their health
condition and skills to self advocate during health
care visits
• 80% lack of adult primary care and specialty providers,
• 80% difficulty breaking bond with adolescents and
parents
• 79% lack of office staff skills in transition
• 76 % lack of reimbursement for transition activities
2008 AAP Periodic Survey# 71
What to do?
Where should I start?
General Assumption #1
“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.”
Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374
General Assumption #2
•
• Every youth deserves a continuous medical home as they
grow into adulthood utilizing a transition plan that
matches:
– the youth’s capacity for independent decision making
– the complexity of the medical condition(s)
– and capacity of family and a circle of support
FIRST STEP
• Do you have a transition Policy for your
practice?
• If yes, do you post it for parents and youth to
see?
• Why Have a transition policy?
How do we create a systems change so
that the rookie learns the rules of the
game and we leave no knot untied
between pediatric and adult healthcare?
• Research states policies and procedures among
stakeholders are essential
– Ensures consensus
– Ensures mutual understanding of
the processes involved
– Provides structure for evaluation
and audit
Transition Policy Template
• Definition-what is it? See transition definition of Soc
Adolescent Med/BMCH
• Outcome- when the youth has left my practice, he/she should
know/have…..
•
•
•
•
Timeline- age of initiation and explanation of exceptions
Components- see AAP consensus statement
Practice Processes
Evaluation- PDSA cycle
Time
Jan 2004
Societal Context for Youth without
Chronic Medical Condition 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)
Transition Template for all Youth*
•
•
•
•
•
Allergies
Immunization history
Episodic events-eg. Injury history
Build Health Family Tree https://familyhistory.hhs.gov/
Prevention Actions
– General: nutrition, physical activity guidelines, routine
screenings, tests according to age
– Specific actions/screenings required due to the family health
tree eg heart disease
– How to handle medical emergencies, ICE
• Medical Providers with telephone #
*Should be portable and electronic
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)
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
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. Develop an individualized transition plan
5. Apply preventive screening guidelines
6. Ensure affordable, continuous health insurance
coverage
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….
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
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
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. Develop an individualized transition plan
5. Apply preventive screening guidelines
6. Ensure affordable, continuous health insurance
coverage
HRTW TOOLs
Checklist for Transition:
• Core Knowledge & Skills
for Pediatric Practices
• Changing Roles for Youth
• Changing Roles for Families
LOOK AT HANDOUTS
Skills
Before 10
• Carry and present insurance card
X
• Know wellness baseline, Dx, Meds
X
Before 18
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
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)
• Preventative Care: What Tests - When
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
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. Develop an individualized transition plan
5. Apply preventive screening guidelines
6. Ensure affordable, continuous health insurance
coverage
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
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
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. Develop an individualized transition plan
5. Apply preventive screening guidelines
6. Ensure affordable, continuous health insurance
coverage
Health Care Transition Plan:
build from changing roles tools
• 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)
How to prepare for the difference in roles:
Shared Decision Making
Provider
Parent
Young Person
Major responsibility
Provides care
Receives care
Support to parent and
child
Manages
Participates
Consultant
Supervisor
Manager
Resource
Consultant
Supervisor
Levels of Support
Shared Decision Making
Levels of Support
Family Role
Independent
Coach
Interdependent
Consultant
Coordinates
Dependent
Manages
Coordinates
(expand circle of
support)
Young Person
Can do or
can direct others
Can do or
can direct others
May need support in some
areas
Needs support
full-time in
all areas
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
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. Develop an individualized transition plan
5. Apply preventive screening guidelines
6. Ensure affordable, continuous health insurance
coverage
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.)
Screen for Life Areas
How does health affect:
• Employment
• Leisure, Recreation
• Community: transportation, housing, activities
• Higher Education or Training
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
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. Develop an individualized transition plan
5. Apply preventive screening guidelines
6. Ensure affordable, continuous health insurance
coverage
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 Young 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
Celebrate the Paperwork!
It Means You are Alive!
Partners in Paying
- INSURANCE CARD: Carry & Present
- Fill in insurance forms ahead of visit
- Child/Youth give the co-pay
- By Age 14 – call for appt & Rx refills
Final Thoughts
9 Easy steps to Plan
a Successful Transition
EXPECTATIONS:
Engage them in their vision of their future-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 in the day?
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
feeling of competence)
9 Easy steps to Plan
a Successful Transition (2)
CHORES:
Are you doing chores?
ATTENDANCE:
How are you doing in school?
PLANNING:
How are you doing with your transition plan?
9 Easy steps to Plan
a Successful Transition (3)
PARTICIPATION:
What do you do when not in school?
CAREER/WORK:
What kind of work/career do you want to do?
STAY WELL:
Are you taking care of your health?
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.
1. Start early
2. Ask and reinforce life span skills prepare
for the marathon
(post your practice transition
policies, help families to understand their changing role)
3. Assist youth to learn how to extend
wellness
4. Reality check: Have all of us done the
prep work for the send off before the
hand off?
In the meantime…..
Share solutions / samples that are working
Blend creative ideas – trial effort: try and see
how it works
Solve the problem that every youth deserves a
continuous medical home as they grow into
adulthood
Thank you for your attention !
Patience White, MD, MA, FAAP
[email protected]
Got Data?
Data Resource Center National Survey for CSHCN
www.cshcndata.org
Nov.
2007
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