Transcript Slide 1

Transition to Adulthood:
The Ultimate Outcome
Your Journey:
Personal & Your Work
Patti Hackett, MEd
Co-Director
HRTW National Resource Center
F2F-PA
February 2009
Thanks + Who & Why we are here!
• KUDOS:
Liz Healy & Joan Badger
• About ME:
born a teacher, low income, blunt,
Union Steward, creative, humorous!
thank-you letter to Dr. Koop
• About YOU: Meeting your expectations
Experts in the Room
• About US:
Agree, Ah ha!, Squirm, Disagree
Hmmmm…….
Reactions?
Discussion
First thoughts?
OVERVIEW
• PART 01: Your Journey - Personal
• PART 02: Your Journey - Your Work
• PART 03: Raising Expectations
• PART 04: Listening & Coaching Youth
• PART 05: Next Action Steps
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
OVERVIEW
• PART 01: Your Journey - Personal
• PART 02: Your Journey - Your Work
• PART 03: Raising Expectations
• PART 04: Listening & Coaching Youth
• PART 05: Next Action Steps
Content for Each Section
HINT Be open to taking advice
The KSAs
• Knowledge
- what needs to be learned
• Skills
- teach it, practice it, master it
• Assets
- Automatic response, solution orientated
- Strengthen Circle of Support
Transitions: YOU & Your Child
• HANDOUT: Exercise Changing Perspective
• Fears & Anxiety
- What holds us back from moving forward
- One step at a time strategies
• Scale 1-5:
Where are you? Your child? Medical Team?
1
2
3
4
5
None
Well, a little
Sometimes a little, other times alot
I worry alot
Very very worried
Health & Transitions: YOU & Your Child
• HANDOUT: Life Span Skills/Changing Roles
• Fears & Anxiety
Carry & Present Health Insurance Card
YOU
YOUR CHILD
YOUR DOCTOR & OFFICE STAFF
• 1 step at a time strategies
1
2 3 4 5
Content for Each Section
The KSAs
• Knowledge
- what needs to be learned
• Skills
- teach it, practice it, master it
• Assets
- Automatic response, solution orientated
- Strengthen Circle of Support
Health & Transitions: YOU & Your Child
• Fears & Anxiety
Youth Calls and Makes Appts
1
YOU
YOUR CHILD
YOUR DOCTOR & OFFICE STAFF
• 1 step at a time strategies
2 3 4 5
Content for Each Section
The KSAs
• Knowledge
- what needs to be learned
• Skills
- teach it, practice it, master it
• Assets
- Automatic response, solution orientated
- Strengthen Circle of Support
Health & Transitions: YOU & Your Child
• Fears & Anxiety
Youth carries portable medical summary 1 2 3 4 5
YOU
YOUR CHILD
YOUR DOCTOR & OFFICE STAFF
• 1 step at a time strategies
Content for Each Section
HANDOUT: My portable medical summary
The KSAs
• Knowledge
- what needs to be learned
• Skills
- teach it, practice it, master it
• Assets
- Automatic response, solution orientated
- Strengthen Circle of Support
Health & Transitions: YOU & Your Child
• Fears & Anxiety
Youth knows & shares cultural practices
that impact health treatments/services
YOU
YOUR CHILD
YOUR DOCTOR & OFFICE STAFF
• 1 step at a time strategies
1
2 3 4 5
Content for Each Section
The KSAs
• Knowledge
- what needs to be learned
• Skills
- teach it, practice it, master it
• Assets
- Automatic response, solution orientated
- Strengthen Circle of Support
Health & Transitions: YOU & Your Child
• Fears & Anxiety
Youth Co-signs Medical Treatment
YOU
YOUR CHILD
YOUR DOCTOR & OFFICE STAFF
• 1 step at a time strategies
1
2 3 4 5
Content for Each Section
The KSAs
• Knowledge
- what needs to be learned
• Skills
- teach it, practice it, master it
• Assets
- Automatic response, solution orientated
- Strengthen Circle of Support
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, GLBTQ/Twin Spirits)
(genetic, situational)
(Immunizations, Blood-work, Vision, etc.)
Growing Up Ready to LIVE!
Health & Wellness …. + Humor
Growing
Up
Ready
to LIVE!
Health & Wellness …. + Humor
What would
you do,
if you thought
you could not
fail?
OVERVIEW
• PART 01: Your Journey - Personal
• PART 02: Your Journey - Your Work
• PART 03: Raising Expectations
• PART 04: Listening & Coaching Youth
• PART 05: Next Action Steps
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
What
does the
Data
tell us?
Natl CSHCN 2005-06
HRTW 2004-06
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?
TRANS Qs: What Did PA families Say?
http://cshcndata.org/DataQuery/SurveyAreas.aspx?yid=2
How often doctors encourage development of
self-management skills and knowledge
-- CSHCN ages 5-17 yrs only
Never
Sometimes
Usually
Always
10.9
17.9
21.5
49.7
Total
%
100.0
TRANS Qs: What Did PA families Say?
http://cshcndata.org/DataQuery/SurveyAreas.aspx?yid=2
Discussing transition to doctors and other providers
who treat adults -- CSHCN ages 12-17 yrs only in PA
Discussion not
needed -- youth's
doctors treat
adults and children
No, have not
talked about it
Yes, we have
talked about it
Total %
39.2
50.6
10.2
100.0
77,539
100,018
20,149
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?
TRANS Qs: What Did PA families Say?
http://cshcndata.org/DataQuery/SurveyAreas.aspx?yid=2
Anyone talked with family about how to
maintain youth's health insurance
as he/she becomes an adult -- CSHCN ages 0-17 only
Already have
discussed this
This discussion
is not necessary
19.9
44.2
This discussion is
needed, but has not
happened yet
35.9
Total
%
100.0
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
Injecting Health & Transition
into Daily Work
1. Assess intake forms
- last health examine was when?
- screening for primary health
(vision, hearing, cardio, mental health, sexuality)
2. Ask the Q…..5 yrs from now
- skills & practice started?
- choice: stuck, stalled or nudged forward
3. What do YOU need for supports, mentor
BOTTOM LINE: Progress takes
time, trial & error + practice
OVERVIEW
• PART 01: Your Journey - Personal
• PART 02: Your Journey - Your Work
• PART 03: Raising Expectations
• PART 04: Listening & Coaching Youth
• PART 05: Next Action Steps
Disabled?? Special Health Care Needs?
<18 – Minor Child/Youth
-- HEALTH SERVICES CYSHCN
Children & Youth with Special Health Care Needs
- Genetic
- Chronic Health Issues
- Acquired
-- ED SERVICES (IEP or 504 Plan)
- Student with Disability
- Student with Health Impairment
>18 – Adult (age of majority)
- Person with Disability
- Person with Health Impairment
LEGAL: ADA (Americans with Disabilities Act)
- Civil Rights
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.
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
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
Good Documentation = Expedited Eligibility
• HANDOUT: Activities of Daily Living
• Just the facts
• Avoid the story telling
• Share the strengths and supports needed
• Efficient – less time during intake
– more time with person
Monitoring Medication Monthly
• HANDOUT: Tracking “Poly Pharm”
• Many CY meds get changed a lot!
• Count pills left at end of month
• Track refills
• Reminder when to call in for renewal of Rx
OVERVIEW
• PART 01: Your Journey - Personal
• PART 02: Your Journey - Your Work
• PART 03: Raising Expectations
• PART 04: Listening & Coaching Youth
• PART 05: Next Action Steps
What
does the
Youth Data
tell us?
NYLN 2003
HRTW-MN
NC Neph 2005
Time
Jan 2004
Societal Context for Transition
for Youth without Medical Conditions
• 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)
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
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
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!
It means YOU are ALIVE
How many states cover
non-categorical adults?
1115 waivers
State-only funds
9 states:
3 states:
Comprehensive
AZ, DE, HA, ME,
MA, NM, NY, OR,
VT
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) benefits at least as generous as typical ESI and
(b) at least all adults up to 100% FPL.
56
OVERVIEW
• PART 01: Your Journey - Personal
• PART 02: Your Journey - Your Work
• PART 03: Raising Expectations
• PART 04: Listening & Coaching Youth
• PART 05: Next Action Steps
Health & Wellness Proactive Steps
• HANDOUT: Thriving Health & Wellness
• Easy – DO NOW
• Takes Time – Declare a deadline
• Hard Decisions – Must do within a year
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
www.familyvillage.wisc.edu
www.familyvillage.wisc.edu/
www.fvkasa.org
???www.nyln.org/
NYLN
www.ncwd-youth.info/index.html
Got Data?
Data Resource Center National Survey for CSHCN
www.cshcndata.org
Nov.
2007
www.familyvoices.org
www11.georgetown.edu/research/gucchd/nccc
infanthearing.org
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
www.hrtw.org
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]