Transcript Slide 1

Transitions: Growing Up Ready to Live!
Transition Journey:
Personal and Work
Ceci Shapland, RN, MSN
Consultant, Family & Youth Involvement
Patti Hackett, MEd
Co-Director
HRTW National Resource Center
F2F-NV, Family Ties
Monday, December 22,2008
Part 01
• The Journey: Starting from where you are now
to where you want to go (personal)
Celebrate: Past/Progress Future/Renewed energy
Q & As
Part 02
• Just the Facts: Health & Transition
Celebrate: Policy knowledge to put into practice!
Q & As
Part 03
• Tools You can use
Celebrate: new dialogue leads to action & change
Q & As
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)
Transition & ……Family
Growing Up Ready to LIVE!
Health & Wellness …. + Humor
During the next two days 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
Keep in Mind: Two Different Issues
Putting Policy Into Practice
• Action  Policy = Change over time
Reduction of Barriers, Increase ease of access
• Action  Practice = NOW
KSAs
Knowledge, Skills & Abilities
- Tools to increase quality
- Tools to Reduce stress
- Tools to Expedite determination for services
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?
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
Pediatric
Adult
Age-related
Growth&
development, future
focussed
Maintenance/decline:
Optimize the present
Focus
Family
Individual
Approach
Paternalistic
Proactive
Collaborative,
Reactive
Shared decisionmaking
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
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.
Transition to Adulthood : Your Personal Journey
Role of Health & Wellness
Fears that slow down personal progress
Past
YOU
– Recognize how far you have come
YOUR CHILD – Recall what they could not do
Current
YOU
– Now? 5 years? 10 years?
YOUR CHILD – Are skills on target or behind? both?
Future
Exercise: Perspective-providing an opportunity
for shifting viewpoint
YOU : skills, knowledge, abilities to strengthen or acquire
YOUR CHILD: what skills can be transferred, learned,
practiced or may need additional supports?
YOUR WORK: thinking ahead, what needs to change to assure
health and transition activities are included in
daily functions, intake, forms, workshops, and/or
conference presentations?
Changing Roles: Preparing for the Difference
Goal: Interactive discussion of the 17 essential skills
to prepare for health care transition
YOU – skills, knowledge, abilities to strengthen or acquire
YOUR CHILD – What to learn, to practice or may need
additional supports?
YOUR WORK – consensus as an agency to include
health & wellness in all phases of work.
HANDOUT: KSAs
Life Span Skills for Health: Transition Basics
Knowledge, Skills and Abilities for Changing Roles
Summary & Charge
HOMEWORK:
1. Work Tasks Injecting health, wellness and transition into
work functions
2. Changing Roles: KSAs
Q & As
Transitions: Growing Up Ready to Live!
Transition Overview:
Policy, Data,
Practice & Trends
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.
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
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
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
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
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)
Transition and the Youth with
Development Disabilities
• Level of participation
• Supports
• Health advocate
Transition is complete when:
• Youth has health care that is paid for
• Care that is developmentally appropriate
• Able to self manage or support is identified
• Able to make health care decisions or support is in
place
• Youth Leaders are partners in policy review and
development
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
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%
Sometimes
16.3%
Usually
23.0%
Always
48.7%
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?
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
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
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
6 Obtain financing for school
(USA)
(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
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
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.
Maintaining
Health Care
Insurance
Transition & ……Insurance
NO HEALTH INSURANCE
40% college graduates
1/2
(first year after grad)
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
Uninsured
57%
Insured
45%
38%
37%
35%
31%
18%
17%
12%
Fill prescriptions
Necessary
specialist visits
44 Source: Collins, et al., 2007.
11%
Medical test,
treatment, or
follow-up
Doctor visit for
medical problem
Any of these
services
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
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!
Q & As
Case Study
Health Affects Everything!
Joe’s Story
• Great job
• Excellent training
• Own apartment
• Good social life
Then what…………………….???
Assessing Health in Transition:
Employment
• Does Joe’s health condition dictate certain work
conditions?
• Will Joe’s medication affect his job duties?
• Should he disclose his health condition to the
employer?
• Does his health dictate hours of work?
Post Secondary Education
• Does Joe need to take his medication while in
class or at work?
• How will it affect his performance?
• Will Joe need accommodations in his schedule
for medical treatments and/or appointments?
Home Living
Does Joe …….
• understand his seizure disorder?
• carry his own emergency medical information?
• understand the side effects of his medication?
• have an emergency plan?
• have health insurance?
Community Life
Does Joe ……..
• have an adult health care practitioner?
• know how to communicate his health care needs?
• know when, how and where to fill a prescription?
• know how to travel to the doctor or drugstore?
Does he have transportation?
Leisure-Recreation
• Does Joe understand the effects of recreational
drugs or alcohol on his health and seizure
disorder?
• Will his medication or health condition affect his
choice of activities?
Using the IEP for Health Transition
Goal:
• I will learn about my seizure disorder and my health
needs to live more safely in the community.
Objective:
• I will write a report for social studies on seizure
disorders.
• I will learn three side effects of my medication
Using the IEP for Health Transition
Objective:
• I will develop an emergency plan with my physician
and present it to my case manager.
• I will identify and interview two adult physicians and
choose a new adult doctor by June, 2008.
Q & As
HANDOUTS:
Portable Medical Summary
Tracking Poly Pharm
Prep for Office Visit: 5 Qs
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
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
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:
Prep for Office Visit: 5 Qs
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
Patti Hackett, MEd
Co-Director, HRTW Center
[email protected]
Ceci Shapland, RN, MSN
Consultant-Family Involvement
Vadnais Heights, MN
[email protected]
Mallory Cyr
Youth Coordinator, HRTW Center
Sabattus, ME
[email protected]
Q & As
www.ncwd-youth.info/index.html
www11.georgetown.edu/research/gucchd/nccc
www.fvkasa.org
???www.nyln.org/
NYLN
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
What would
you do,
if you thought
you could not
fail?