Transcript Healthy and Ready to Work - Syntiro

Transition to Adulthood:
Preparing for the Difference
for Children and Youth
with Special Health Care Needs
Patti Hackett, MEd
Co-Director, HRTW Center
Bangor, ME
Patience H. White, MD,
FAAP, MA
Medical Advisor- HRTW Center
Washington, DC
Family Voices Conference
Moving Forward: The Future of Health Care
for Children and Youth
Washington, DC
May 26, 2007www.hrtw.org
Sacheen Smith
Albuquerque, NM
www.hrtw.org
www.hrtw.org
HRTW TEAM
Title V Leadership
Toni Wall, MPA
Federal Policy
Patti Hackett, MEd
Tom Gloss
Kathy Blomquist, RN, PhD
Interagency
Partnerships
Debbie Gilmer, MEd
HRTW University
Medical Home &
Transition
Richard Antonelli, MD,
MS, FAAP
Patience H. White, MD,
MA, FAAP
Betty Presler, ARNP,
PhD
Jon Nelson, MS
Family, Youth & Cultural
Competence
HRSA/MCHB Project Officer
Elizabeth McGuire
www.hrtw.org
Ceci Shapland, MSN
Trish Thomas
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.
www.hrtw.org
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 canwww.hrtw.org
have up to 3 ICE contacts (per EMS)
Supporting Success: It Take ALL of US!
Y o u th
F a m ily
F r ie n d s
C o m m u n it y
P a r t ic ip a t io n
P e r s o n a l & C iv ic
R e s p o n s ib ilit y
S e lf
S u ffic ie n c y
E m p lo y m e n t
www.hrtw.org
P eers
School
A tten d an ce
S e lf
Advocacy
Independent
L iv in g
M en tors/
R o le M o d e ls
O th er
“En cou rag ers”
C areer
D e v e lo p m e n t
S e lf- C a r e
A ccess to A p p r o p r ia t e u s e
o f H e a lt h C a r e
W e lln e s s :
P h y s ic a l, S o c ia l,
E m o t io n a l
Objectives
• Discuss what is most important to
young people with SHCN for their
transition to adulthood and the
current realities for YSHCN
• Review the medical perspective and
differences between pediatric and adult
health care systems
• Learn what a health care professional can
do to assist youth with transition
www.hrtw.org
Discussion
• What do you think YOUTH want to
know about their health care/status?
• At what age should children start
asking their own questions to their
Doctor?
• At what age does your practice
encourage assent signatures?
www.hrtw.org
Sacheen Smith
Albuquerque, NM
[email protected]
www.hrtw.org
Moving Forward
Internship: Washington, DC
• Small Business Administration,
Office of Native American Affairs
• Environmental Protection Agency,
Office of Congressional Relations
Health & Wellness
• Johns Hopkins, was the best
• Opportunity to get the great health care
www.hrtw.org
Life Transitions
• Diagnosed with Keratoconus
• Health Care:
-
Colorado Eye Associates
Moved back to NM to be near family
Began care with Indian Health Services
Surgeries: Corneal Transplants
Contract Health Declined Services
Sought other resource
• Progressive Eye Disease
• Diagnosed with Optic Atrophy
www.hrtw.org
Another Obstacle, Healing & Responsibilities
• Diagnosed with a Brain Tumor
• Maintain Cultural Balance
- Friends in CT had healing ceremonies for me
- In the middle of radiation and chemotherapy, I
would travel to CT and participate to gain more
spiritual strength
Responsibilities to uphold:
- Take charge of my Health Care
- Committed to set up my appointments
- Arrangements with school and the internship
- Make arrangements to /from Johns Hopkins
www.hrtw.org
Recommendations
• Full Coverage: Native Americans to have
healthcare coverage, including
prescriptions, on and off the reservation
• Create a Policy: where we can train
people interested in Health Care, to
educate youth with disabilities to selfdetermine their own Health Care
• Sustaining Culture: Annie Wauneka
Philosophy to educate the medicine men
and Health Care Professionals to maintain
balance
www.hrtw.org
What does
the Data
tell us?
Not everything that can
be counted counts,
and not everything that
counts can be counted.
Albert Einstein
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
www.hrtw.org
Youth are Talking: Health Concerns
Survey - 1300 YOUTH with SHCN / disabilities
Main concerns for health:
– what to do in an emergency,
– 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
www.hrtw.org
Youth are Talking: Are We Listening?
Experiences that were most important:
• learning to stay healthy
• getting health insurance
SOURCE: National Youth Leadership Network
Survey-2001,
www.hrtw.org
300 youth leaders disabilities
Outcome Realities
• Nearly 40% cannot identify a primary care
physician
• 20% consider their pediatric specialist to
be their ‘regular’ physician
• Primary health concerns that are not being
met
• Fewer work opportunities, lower high
school grad rates and high drop out from
college
• YSHCN are 3 X more likely to live on
income < $15,000
www.hrtw.org
CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002
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%
www.hrtw.org
Maria Ferris, MD, PhD, MPH, UNC Kidney Center
Objectives
• Discuss what is most important to young
people with SHCN for their transition to
adulthood and the current realities for
YSHCN
• Review the medical perspective and
differences between pediatric and
adult health care systems
• Learn what a health care professional can
do to assist youth with transition
www.hrtw.org
Discussion
• When did you transition to adult
care? How about your children?
• Briefly share your experience
transitioning a patient to adult care?
• What skills do youth need before
transitioning ?
• How do you support families in their
transitioning roles?
www.hrtw.org
The Ultimate Outcome:
Transition to Adulthood
Health Care Transition
Requires Time & Skills
for children, youth, families
and their Doctors too!
www.hrtw.org
What is 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
www.hrtw.org
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
www.hrtw.org
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
www.hrtw.org
Shared Decision Making 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
www.hrtw.org
Levels of Support Shared Decision Making
Levels of Support
Independent
Family Role
Coach
Interdependent Consultant
Coordinates
Dependent
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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
Informed Decision Makers
FERPA
Family Education Rights & Privacy Act
HIPAA
Health Insurance Portability and
Accountability Act
1. Privacy  Records
2. Consent  Signature (signature stamp)
- Assent to Consent
- Varying levels of support
- Stand-by (health surrogate)
- Guardianship (limited to full)
www.hrtw.org
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
www.hrtw.org
…….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 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
www.hrtw.org
# of patients
Fewer
Greater
Transition to Adulthood
www.hrtw.org
Objectives
• Discuss what is most important to young
people with SHCN for their transition to
adulthood and the current realities for
YSHCN
• Review the medical perspective and
differences between pediatric and adult
health care systems
• Learn what a health care professional
can do to assist youth with transition
www.hrtw.org
Discussion
• Are you familiar with the Consensus
Statement? The new Joint Principles?
• How do you teach children and youth
about their wellness baseline?
• What 3 essential skills you can teach
in the office encounter?
www.hrtw.org
A Consensus Statement on 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
Pediatrics 2002:110 (suppl) 1304-1306
www.hrtw.org
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
1. Identify primary care provider



Peds to adult
Specialty providers
Other providers
Pediatrics 2002:110 (suppl) 1304-1306
www.hrtw.org
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
2. Identify core knowledge and skills

Encounter checklists

Outcome lists

Teaching tools
www.hrtw.org
Core Knowledge & Skills: POLICY
1. Dedicated staff position coordinates transition
activities
2. Office forms are developed to support
transition processes
3. CPT coding is used to maximize
reimbursement for transition services
4. Legal health care decision making is discussed
prior to youth turning 18
5. Prior to age 18, youth sign assent forms for
treatments, whenever possible
6. Written transition policy states age youth
www.hrtw.org
should
no longer see a pediatrician
Core Knowledge & Skills: MEDICAL HOME
1. Practice provides care coordination for youth
with complex conditions
2. Practice creates an individualized health
transition plan before age 14
3. Practice refers youth to specific family or
internal medicine physicians
4. Practice provides support and confers with
adult providers post transfer
5. Practice actively recruits adult primary care
/specialty providers for referral
www.hrtw.org
Core Knowledge & Skills: FAMILY & YOUTH
1. Practice discusses transition after diagnosis,
and planning with families/youth begins
before age 10
2. Practice provides educational packet or
handouts on transition
3. Youth participate in shared care management
and self care (call for appt/ Rx refills)
4. Practice assists families/youth to develop an
emergency plan (health crisis and weather or
other environmental disasters)
www.hrtw.org
Core Knowledge & Skills: FAMILY & YOUTH
5. Practice assists youth/family in creating a
portable medical summary
6. Practice assists with planning for school and/or
work accommodations
7. Practice assists with medical documentation
for program eligibility (SSI, VR, College)
8. Practice refers family/youth to resources that
support skill-building: mentoring, camps,
recreation, activities of daily living, volunteer/
paid work experiences
www.hrtw.org
Core Knowledge & Skills:
HEALTH CARE INSURANCE
1. Practice is knowledgeable about state
mandated and other insurance benefits
for youth after age 18
2. Practice provides medical documentation
when needed to maintain benefits
www.hrtw.org
Core Knowledge & Skills: SCREENING
1. Exams include routine screening for risk
taking and prevention of secondary
disabilities
2. Practice teaches youth lifelong
preventive care, how to identify health
baseline and report problems early;
youth know wellness routines,
diet/exercise, etc.
www.hrtw.org
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
3. Maintain an up-to-date medical summary
that is portable and accessible
 Knowledge of condition, prioritize
health issues
 Communication / learning / culture
 Medications and equipment
 Provider contact information
 Emergency planning
 Insurance information, health surrogate
www.hrtw.org
Pediatrics 2002:110 (suppl) 1304-1306
Create Portable Medical Summary
- Use as a reference tool
- Accurate medical history & contact #s
- Carry in your wallet.
- Use for disability documentation
www.hrtw.org
Preparing for the 15 minute Doctor Visit
Know Your Health & Wellness Baseline
• How does your body feel on a good day?
• What is your typical body temperature,
respiration count, plus and elimination
habits?
www.hrtw.org
Survive & Thrive!
- Encourage questions at each visit.
- TOOL: 5 Q
- Assent: co-sign treatment plans.
- Youth calls for appointments and Rx refills
Concise Medical Reporting
- Give brief health status and overview of needs.
- Know the emergency plan when health changes.
www.hrtw.org
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
4. Create a written health care transition
plan by age 14: what services, who
provides, how financed
 Expecting, anticipating and planning
 Experiences and exposures
 Skills: practice, practice, practice
 Collaboration with schools and
community resources
www.hrtw.org
Pediatrics 2002:110 (suppl) 1304-1306
Collaboration with Community Partners
• Special Education Co-ops
• Higher Education
• Vocational Rehabilitation/
• Workforce Development
• Centers for Independent Living
• Housing, Transportation, Personal
Assistance, and Recreation
• Mental health
• Grant projects in your state
www.hrtw.org
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
5. Apply preventive screening guidelines
 Stay healthy
 Prevent secondary disabilities
 Catch problems early
6. Ensure affordable, continuous health
insurance coverage
 Payment for services
 Learn responsible use of resources
Pediatrics 2002:110 (suppl) 1304-1306
www.hrtw.org
Health & …. Life-Span
Secondary Disabilities
- Prevention/Monitor
- Mental Health, High Risk Behaviors
Aging & Deterioration
- Info long-term effects
(wear & tear; Rx, health cx)
- New disability issues & adjustments
www.hrtw.org
Screen for All Health Needs
• Hygiene
• Nutrition (Stamina)
• Exercise
• Sexuality Issues
• Mental Health
• Routine
(Immunizations, Blood-work, Vision, etc.)
• Secondary Conditions/Disabilities
• Accelerated Aging issues
www.hrtw.org
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 Fund 2003
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Societal Context for
Youth without Diagnoses in Transition
• Parents are more involved - dependency
“Helicopter Parents”
• 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)
www.hrtw.org
Celebrate the Paperwork!
It Means You are Alive!
Partners in Paying
- INSURANCE CARD: Carry & Present
- Fill in insurance forms ahead of visit
- Learn about coverage and coding
- Child/Youth give the co-pay
- Age 10 – call for appt & Rx refills
www.hrtw.org
Having a Voice: Children & Youth
- Start early: carry insurance card
- Present insurance card
- Prepare for Doc visit: 5 Qs
- Know wellness baseline
- Practice calling for Rx, appts
- Assess decision making, provide
supports when needed.
(ASSENT TO CONSENT)
www.hrtw.org
Families: Prepare for Changing Roles
• Temporary spokesperson on behalf of
minor child (until age 18, and declared by the court)
- Plant the suggestion: Who is your
patient, future appt alone with the
patient AND offer ideas what do while
family waits in the waiting room.
- 2 voices to be heard: families and CY
- ASSENT TO CONSENT
- New time/roles without guilt
www.hrtw.org
Providers: Prepare for Changing Roles
• Establish and post transition policy
(gets everyone thinking ahead and not
feeling ambushed)
- Plant the suggestion: Who is your
patient, future appt alone with the
patient AND offer ideas what do while
family waits in the waiting room.
- Chronic health issues – CY need to be
competent in their information and
decision making. Ask before offering the
answer.
www.hrtw.org
Transition & ……Sexuality
www.hrtw.org
The Concerns -- Teachers
 What is my role?
(legal too!)
 Balance need to know
 Balance cultural / religious beliefs
 Open dialogue - respect and privacy
 What to share or not with parents?
 Where are the experts? Role models?
www.hrtw.org
Who Starts the Discussion?
1. Medical (Doc, Nurse, OT/PT)
2. Family (how early?)
3. Teachers
4. Community resources
Everyday messages: TV, videos,
Friends, Internet – family, community
www.hrtw.org
Family Roles
 What pediatricians & teachers
don’t know - don’t want to know
 Discussion with primary care - referral
 Medical Home www.medicalhomeinfo.com
(Sexuality as part of REAL comprehensive care plan)
 Including in the IEPs, OT/PT plans
www.hrtw.org
Integrated Sexual Healthcare
 Importance of sexuality in healthcare
 Psychologist’s responsibility
 Rehab team sharing responsibility
 Patient’s ranking of sexuality as
important
www.hrtw.org
Treatment Planning
 Identifying problem
 Sample definition of problem
- Integration into social community
- Expansion of strategies for sexual
expression
- Erectile dysfunction
- Female arousal disorder
- Sexual dysfunction
www.hrtw.org
Treatment
 Rehab Psychologist inquires about
sexuality
 Patient defines problem
 Rehab Psychologist defines treatment
problem to team
 Team members decide who will be
involved (OT, PT, Social Work, Recreation therapy)
www.hrtw.org
Family Roles
 Changing role:
Parent  Personal Support
 Honesty & Dignity (before puberty)
 Pre-plan (smoothing out awkward moments)
 When personal values differ
 Terminal does not mean asexual
www.hrtw.org
Youth & Family Roles
 Masturbation Time!
 Supplies:
Youth (directs)
Parent (gathers)
 Role Switch: parent  personal support
 Clean-up (no talking)
 Role Switch: personal support  parent
www.hrtw.org
Youth & Family Roles
 Assess - The Plan, Supplies & Support
 Revise supports - disease progression
 Libido change: Rx Traditional - Alternative
www.hrtw.org
Resources
 www.MyPleasure.com
 www.Sexualhealth.com
 The Ultimate Guide to Sex and Disability
(Kaufman, Silverberg, & Odette, 2003)
 Quality Mall – Person Centered services supporting
people with developmental disabilities
http://www.qualitymall.org/directory/dept1.asp?deptid=16
www.hrtw.org
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
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?
www.hrtw.org
What
would
you do,
if you
thought
you could
not fail?
www.hrtw.org
Patti Hackett, MEd
Co-Director, HRTW Center
Bangor, ME
[email protected]
Patience H. White, MD, FAAP, MA
Medical Advisor- HRTW Center
Washington, DC
[email protected]
Sacheen Smith
Albuquerque, NM
[email protected]
www.hrtw.org