Transcript Slide 1

Transitions: Growing Up Ready to Live!
The Ultimate Outcome: Transition to Adulthood
Transition Overview:
Policy, Data,
Practice & Trends
Patti Hackett, MEd
Co-Director
HRTW National Resource Center
Face to Face Meeting
Burns, TN
July 17, 2008
Today
Part 01 – Overview
National Data, Federal Policy
Part 02 – Preparing for the Difference:
Roles & Tools for Providers,
Family and Children/Youth
Part 03 – Discussion:
Putting Ideas Into Practice:
Your Strategies – Making it Work
Learning Objectives
1. Define transition and its components
2. Discuss Data, Policy & Trends.
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?
About YOU
Burning Questions:
Need answers & Resources
- Experts in the Room
- Resources post conf
- Solution Network
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
www.hrtw.org
Growing Up Ready to LIVE!
Health & Wellness …. + Humor
1. What do you remember about your
adolescent years and health care-when
did you leave your pediatrician and move
to an internist?
2. Have you had experience in assisting a
youth with a disability moving to adult
systems?
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
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.
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
3. What is transition?
4. Who needs transition planning?
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
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
The WHEN does it begin?
Health Care Transition
 Skills: Wellness: Chronic Health Care Management
 Access to services: prep for transfer
Life Skills take life span timeline
Skills
Before 10
• Carry and present insurance card
X
• Know wellness baseline, Dx, Meds
X
• Make own Doctor appts
X
• Call in Rx refills
• Learning Choice
Before 18
X
X
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
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
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.
The Ultimate Outcome:
Transition to Adulthood
Health Care
Transition
Requires
Time & Skills
for children,
youth, families
and
their Doctors too!
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
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
What
does the
Data
tell us?
Title V, SSI
Natl CSHCN 2005-06
HRTW 2004-06
NC Neph 2005
Youth – MN 1997
Youth – NYLN 2003
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
SSI
953,295 ages 0-17
ages 13-17
TN – 23,665
TN –
8,544
SOURCE: SSA, Children Receiving SSI,
December 2007
What
does the
Data
tell us?
Natl CSHCN 2005-06
HRTW 2004-06
NC Neph 2005
Youth – MN 1997
Youth – NYLN 2003
Got Data?
Data Resource Center National Survey for CSHCN
www.cshcndata.org
Nov.
2007
RI Data…
CSHCN
0-5
NATL
TN
13.9
16.4
229,744
8.8
12.0
6-11
16.0
18.4
12-17
16.8
18.9
Transition
services
received
41.2
39.6
NS-CSHCN 2005
Section 6: Family Centered Care - Transition Qs
49.3%
NO
53.8%
NO
46.2%
YES
If YES, have they talked with you about having
[CHILD’S NAME] eventually see doctors or
other health care providers who treat
adults?
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
Never
11.9%
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?
Sometimes
16.3%
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:
Usually
23.0%
IF 5-11 Years: learning about (his/her) health or helping
with treatments and medications?
Always
48.7%
IF 12+ Years: taking medication, understanding (his/her)
health, or following medical advice?
What
does the
Data
tell us?
Natl CSHCN 2005-06
HRTW 2004-06
NC Neph 2005
Youth – MN 1997
Youth – NYLN 2003
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
HRTW Surveys: Results 2007
About Those Who Responded
• 52 physicians / 26 states
• Most involved with Medical Home projects
• 47 pediatricians, 4 Med-Peds, 1 Family
Consensus Statement- Knowledge
• 50% were familiar
• 6 % unsure
• 42% not
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
Results: Core Knowledge & Skills
36% have forms to support transition
(82% want help)
39% provide educational materials
regarding transition
(48% want help)
Results: Core Knowledge & Skills
58% help youth/families
plan for emergencies
(31 % want help)
68% assist with accommodations
school/studying or work
(21% want help)
35% Make transportable medical
record for some patients
(43% want help)
Results: Core Knowledge & Skills
63% promote independence in
health condition management
(25% want help)
When youth tern 18-writen policy to
discuss? 77% no
Do you seek verbal assent? 81% Written 23%
50% refer to skill-building experiences
(35% want help)
Results
33% Create individualized
health transition plan
for at least some patients
(39% want help)
65% Screen to identify YSHCN
who need transition services
(29% want help)
Results: Overall practice assessment
Rate your practice with regards to transition
processes in general:
- not interested 2%
- not have, interested 29%
- beginning stages 25%
- working on policy/processes 19%
- have policy and processes integrated 13%
Conclusions
* Respondents are reluctant to transition their youth with
SHCN to adult practices
* Respondents are well versed in coordinated care but are
reluctant to adopt processes to give youth with SHCN the
tools/skills to negotiate adult health care practices
What
does the
Data
tell us?
Natl CSHCN 2005-06
HRTW 2004-06
NC Neph 2005
Youth – MN 1997
Youth – NYLN 2003
Internal Medicine Nephrologists (N=35)
Survey Components
Percent of transitioned patients
Percentages
< 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
What
does the
Data
tell us?
Natl CSHCN 2005-06
HRTW 2004-06
NC Neph 2005
Youth – MN 1997
Youth – NYLN 2003
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
Medical Home includes….
• A partnership - family and primary care doctor.
• A relationship - mutual trust and respect.
• Connections - supports - services for child / family.
• Respect for the family’s cultural and religious beliefs.
• After hours & weekend access to medical consultation
• Families feel supported in caring for their child
• Primary doctor works with team/other care providers
Health & Wellness: Being Informed
“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
CORE National Performance Measures
Transition &……. Medical Home
Preparation BEFORE the transfer to adult care
- Increasing CY Dx knowledge
“Activated Patient”
- Maintain/Improve Health & Wellness
- Preparing for the Difference
- Payor
- Paperwork work!
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
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
What would
you do,
if you thought
you could not
fail?
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?
Patti Hackett
[email protected]
[email protected]
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