Transcript Slide 1

Welcome ….. Before We Start
Handout: Changing Roles
- Fill in
Post It Notes “Question Lot”
-
your name, email, Q, topic, expertise
-What question do you want to ask?
-What expertise do you have and can share?
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
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)
Imagine the Possibilities….
Transition to Adulthood
Transition & ……Family
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
Transitions: Growing Up Ready to Live!
The Ultimate Outcome: Transition to Adulthood
HRTW National Resource Center Team
Patti Hackett, MEd
Co-Director
Mallory H. Cyr
Youth Coordinator
Ceci Shapland, RN, MS
Consultant-Family Partnerships
Maine Integrative Services Grant
Anna H. Cyr
Augusta, ME
October 22, 2008
Part 01 – Overview
National Data, Federal Policy
Part 02 – Preparing for the Difference:
Roles for Providers,
Family and Children/Youth
Part 03 - Tools for Providers,
Family and Children/Youth
Part 04 – Discussion:
Putting Ideas Into Practice:
Your Strategies – Making it Work
www.hrtw.org
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.
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?
Part 01 – Overview
National Data, Federal Policy
Part 02 – Preparing for the Difference:
Roles for Providers,
Family and Children/Youth
Part 03 - Tools for Providers,
Family and Children/Youth
Part 04 – Discussion:
Putting Ideas Into Practice:
Your Strategies – Making it Work
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
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
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
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
Part 01 – Overview
National Data, Federal Policy
Part 02 – Preparing for the Difference:
Roles for Providers,
Family and Children/Youth
Part 03 - Tools for Providers,
Family and Children/Youth
Part 04 – Discussion:
Putting Ideas Into Practice:
Your Strategies – Making it Work
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)
3. What is transition?
4. Who needs transition planning?
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….
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
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%
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?
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
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
41 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
Maine Health Insurance Statute – up to age 25
Chapter 33:§2742-A. Extension of coverage for dependent children
Effective August 23, 2006
Dependent child; definition.
A. Is unmarried;
B. Has no dependent of the child's own;
C. Is a resident of this State or is enrolled as a full-time student at
an accredited public or private institution of higher education; and
D. Is not provided coverage under any other individual or group
health insurance policy or health maintenance organization
contract or under a federal or state government program.
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!
How many states cover
non-categorical adults?
Comprehensive
Less than
comprehensive
1115 waivers
State-only funds
9 states: AZ,
3 states: DC,
DE, HA, ME,
MA, NM, NY,
OR, VT
MN, WA
12 states: AR,
1 state: PA
DC, IA, ID, IN,
MD, MI, MO,
MT, OK, TN, UT
Sources: Klein and Schwartz, 2008; Dorn, et al., 2005. Note: comprehensive programs provide (a) benefits
at least as generous as typical ESI to (b) at least all adults up to 100% FPL.
45
Part 01 – Overview
National Data, Federal Policy
Part 02 – Preparing for the Difference:
Roles for Providers,
Family and Children/Youth
Part 03 - Tools for Providers,
Family and Children/Youth
Part 04 – Discussion:
Putting Ideas Into Practice:
Your Strategies – Making it Work
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: Preventative Care: What Tests - When
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
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.
TOOLS - You can use by FRI!
Family/Youth
- Changing Roles: Families
- Changing Roles: Children & Youth
- 5 Qs
- IADL reporting template
TOOLS - You can use by FRI!
Medical Home
- Knowledge & Skills Checklist
- Portable medical summary
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
TOOLS - You can use by FRI!
Transition - Making the Paperwork work!
- sample VR letter
- DME letter customized powered wheelchair
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
What would
you do,
if you thought
you could not
fail?
Patti Hackett, MEd
Co-Director, HRTW Center
[email protected]
Mallory Cyr
Youth Coordinator, HRTW Center
Sabattus, ME
[email protected]
Ceci Shapland, RN, MSN
Consultant-Family Involvement
Vadnais Heights, MN
Part 01 – Overview
National Data, Federal Policy
Part 02 – Preparing for the Difference:
Roles for Providers,
Family and Children/Youth
Part 03 - Tools for Providers,
Family and Children/Youth
Part 04 – Discussion:
Putting Ideas Into Practice:
Your Strategies – Making it Work
www.familyvillage.wisc.edu
www.familyvillage.wisc.edu/
www.fvkasa.org
???www.nyln.org/
NYLN
www.ncwd-youth.info/index.html
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