Transcript Healthy and Ready to Work - Syntiro

Healthy & Ready
to Participate!
Patti Hackett, MEd
HRTW Co-Director,
Bangor, ME
Ceci Shapland, RN, MSN
HRTW Family/Youth Consultant
Vadnais Heights, MN
CD cast – NDCPD
Minot State University, Minot, ND
March 14, 2007
www.hrtw.org
www.hrtw.org
www.hrtw.org
www.nd.gov/humanservices/services/medicalserv/cshs/
Tamara Gallup-Millner
CSHS Unit Director
701-328-4814 / [email protected]
Kora Dockter
Program Administrator
701-328-4854 / [email protected]
www.hrtw.org
www.fvnd.org
Family to Family
Health Information and Education Center
888-522-9654 / 701-493-2634
Donene Feist
[email protected]
www.hrtw.org
Learning Objectives
Participants will:
• List 3 ways health and wellness impacts
personal outcomes despite significant
disability.
• List four core skills for a successful
transition in health.
• State five strategies for developing shared
responsibilities of youth and adults with
disabilities, families and educators, and
human service professionals in supporting
the attainment of enviable lives.
www.hrtw.org
What’s Health Got to Do with
Transition? EVERYTHING!
• Quality of Life & Living
• Relationships
• School / Employment
• Housing
• Community Living
• Recreation
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.
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
Nationwide
9.4 million (13%) <18
Title V CYSHCN
963,634
SSI Recipients 1,036,990
386,360
Special Education
(0-18*)
ND 1,371
( 0-17)
ND
960
(13-17)
ND
338
( 3-21)
ND14,621
Sources:
1.
2.
3.
4.
www.cshcndata.org
TITLE V Block Grant FY 2006, www.mchb.hrsa.gov
* Most State Title V CSHCN Programs end at age 18
SSA, Children Receiving SSI, December 2005, www.ssa.gov
EDUCATION – National www.ed.gov, North Dakota,
www.dpi.state.nd.us
www.hrtw.org
Disabled?? Special Health Care Needs?
HEALTH SERVICES CYSHCN
- Children & Youth with Special Health Care Needs
- Genetic
- Chronic Health Issues
- Acquired
EDUCATION SERVICE
- Youth with Disability
- Youth with Health Impairment
ADA & 504
- Disability and/or Health Impairment
www.hrtw.org
“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.
http://www.pediatrics.org/search.dtl
www.hrtw.org
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
www.hrtw.org
ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf
Surgeon General’s Call for Action
Improve the Health & Wellness of Persons with Disabilities 2005
1. People nationwide understand that
persons with disabilities can lead long,
healthy, productive lives,
2. Health care providers have the
knowledge and tools to screen,
diagnose and treat the whole person
with a disability with dignity
www.hrtw.org
Surgeon General’s Call for Action
Improve the Health & Wellness of Persons with Disabilities 2005
3. Persons with disabilities can promote
their own good health by developing and
maintaining healthy lifestyles
4. Accessible health care and support
services promote independence for persons
with disabilities.
www.hrtw.org
Health & Wellness for CYSHCN:
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.”
SOURCE: Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374
www.hrtw.org
Transition & ……Family & Youth
www.hrtw.org
Living Well with a Disability
Youth
Family
Friends
Community
Participation
Personal & Civic
Responsibility
Self
Sufficiency
Employment
www.hrtw.org
Peers
School
Attendance
Self
Advocacy
Independent
Living
Mentors/
Role Models
Other
“Encouragers”
Career
Development
Self-Care
Access to Appropriate use
of Health Care
Wellness:
Physical, Social,
Emotional
It Means You are Alive!
Survive & Thrive
Responsible :
Role in the family
Responsible :
Medications/equipment
Responsible:
Prevention of secondary
disabilities and routine
preventative care
www.hrtw.org
Preventative Care
•
Hygiene
•
Nutrition
•
Oral Health
•
Sexuality Issues
•
Mental Health
•
Routine
www.hrtw.org
(Stamina)
(“Doing IT,” GLBTQ)
(Immunizations, Blood-work, Vision, etc.)
New World: New Lingo
ESSENTIAL SKILLS

Words & Lingo

Acknowledge Today Reality

Eye on the Future Hope
Live your life the way you would have,
just know you will have more equipment
www.hrtw.org
Preparing for the 15 minute Doctor Visit
(refer to handout)
Know Your Health & Wellness Baseline
• How does your body feel on a good day?
• What is your typical body temperature,
blood pressure, respiration count, pulse
and elimination habits?
www.hrtw.org
Create Portable Medical Summary
(refer to handout: Medically complex & DD samples)
- Use as a reference tool
- Accurate medical history & contact #s
- Carry in your wallet.
- Use for disability documentation
www.hrtw.org
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
ND State Laws – Consent of Minor
(Refer to handout for other medical
treatment categories)
Did you know?
• Minor may consent
independently in emergencies.
N.D. Cent. Code 14-10-17.1.
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
Outcome Realities
• Nearly 40% cannot identify a primary care
physician
• 20% consider their pediatric specialist to
be their ‘regular’ physician
• Primary health concerns 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
Transition Questionnaire
National
• HRTW Spring/Fall 2006 www.hrtw.org
State
• EPIC – PA, 2005
• RI – AAP/Title V, 2005
• Following Slides Grouped by the
6 Critical First Steps in Concensus
Statement
www.hrtw.org
HRTW Surveys: Results - Summer/Fall 2006
About Those Who Responded
• 30+ practices / 17+ states
• Most involved with Medical Home projects
• 25+ pediatricians, 2 Med-Peds, 1 Family
Consensus Statement- Knowledge
• 57% were familiar
• 11% unsure
• 32% not
www.hrtw.org
Barriers to Transition
Extremely Important/Important
90% Fragmentation of care among
systems
83% Lack of services for YSHCN who
require supported living
82% Lack of knowledge or linkages to
community resources
82% Lack of staff time
www.hrtw.org
Barriers to Transition
Extremely Important/Important
72%
Lack of capacity of adult providers
for care of YSHCN
64%
61%
www.hrtw.org
Inability to access adult specialty
care
Limited coverage for services by
public/private insurance
2. Core Knowledge & Skills
(con’t)
61% help youth/families
plan for emergencies
(29% want help)
67% assist with accommodations
school/studying or work
(21% want help)
www.hrtw.org
2. Core Knowledge & Skills
(con’t)
64% promote independence in
health condition management
(25% want help)
57% refer to skill-building
experiences
(32% want help)
www.hrtw.org
2. Core Knowledge & Skills
(con’t)
86% refer to community resources/
public benefits
(11% want help)
Formal referral mechanisms in place:
39%
25%
21%
21%
mental health/counseling
adult subspecialty
adult PCPs
dental
< 15% make formal referral to adult
services
VR, SSI work incentives, school or
college services, recreation, transportation,
attendant care, Centers for Independent
Living, supported living, housing
(about 20% provide information)
www.hrtw.org
3. Portable Medical Summary
40%
29%
www.hrtw.org
Make transportable medical
record for some patients
(43% want help)
PA: White, et al
3. Medical Summary to Providers
RI: Burke, et al
• 31% send written summary to adult
providers for adolescents
• 51% send written summary to adult
providers for YSHCN
• 18% communicate directly with adult
provider to assure transition successful
www.hrtw.org
4. Written Health Transition Plan
38% Create individualized
health transition plan
for at least some patients
(39% want help)
4% PA: White, et al
61% Helped write IEP goals:
28%
29%
32%
www.hrtw.org
none
1-5 x in past year
6 or more times in past year
Present Level of Performance (PLOP)
& HEALTH
Any health issue or limitation can be
incorporated into the PLOP if it
describes how the child’s disability
affects the child’s participation in
school and recreational activities.
20 U.S.C. Section 1414 (d)(1) (A) of IDEA
www.hrtw.org
PLOP & HEALTH
(con’t.)
In addition, other needs for supports,
adaptations, accommodations, equipment,
etc. related to the student’s health
concerns can be recorded in the PLOP.
www.hrtw.org
PLOP & HEALTH: Samples
•
•
“John cannot verbally tell caregivers how
to transfer him, making him reliant on
his ed. Asst. throughout the day.”
This year, Latrice missed 10 school days
because of pressure sores. She needs to
learn ways to move in her wheelchair to
reduce risk of pressure sores so she
doesn’t miss school.”
Slides from: Waisman Center, UW
www.hrtw.org
PLOP & HEALTH: Samples
• “Sarah knows which meds she takes daily.
She needs reminders during lunch and
PM recess.”
•
“Tim easily becomes dehydrated, causing
lack of focus. Tim is just beginning to
recognize signs of dehydration.”
www.hrtw.org
Slides from: Waisman Center, UW
PLOP & HEALTH: Transition
• Starting at age 14, IEPs can be more
closely linked to post-school outcomes.
• Post-school outcomes can and should
include as much self-care and independent
management of health conditions as
possible.
Slides from: Waisman Center, UW
www.hrtw.org
Sample Health-Related IEP
Benchmarks in the category of
Independence/Self Help
• “Tim will monitor his urine output for quantity and
color to assess for dehydration.”
• “John will practice a protocol for directing people
on how to transfer him so he can follow school
routines without 1-on-1 supports.”
• “Latrice will learn a routine of chair exercises that
she uses during gym class to reduce the chance
of pressure sores.”
www.hrtw.org
Slides from: Waisman Center, UW
Sample Health-Related
IEP Benchmarks - category of
Independence/Self Help (Con’t)
• “Sarah will follow a picture schedule
throughout the day to independently take
her meds without adult prompt 4 out of
5 days per week.”
• “Tom will learn how to cath himself and
clean up afterward so he can use the
bathroom independently.”
Slides from: Waisman Center, UW
www.hrtw.org
5. Preventive Screening
86%
But what
about Health
Issues
Impacting
School
Performance?
Preventive screening – CYSHCN
32% AAP forms
21% GAPS
18% Bright Futures
18% Guidelines to
Clinical Preventive Services
7% State health department forms
Others – created or adapted forms
45% - PA: White, et al
www.hrtw.org
New World: New Lingo
1. Moving Up from Powerless
2. Transferring Skills
Doc/RN/Educators parent family & friends
Family  child/youth
Youth  friends
3. Strengthening Families
- Support (Family to Family)
- Mentor (Life Coach)
- Counseling (Getting thru the hard patch)
- Financial Planning
www.hrtw.org
“Shared Management” as the Goal
• Consciously not using more common term
“self-management”
• View the highest level of achievement is
not independence but effective
interdependence
Kieckhefer 2000
www.hrtw.org
Shared Decision Making
Provider
Parent/Family
Young Person
Major
responsibility
Provides care
Receives care
Support
to parent
family
child/youth
Manages
Participates
Consultant
Supervisor
Manager
Resource
Consultant
Supervisor
www.hrtw.org
Issue
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
Management
Prescriptive
Collaborative
Non-adherence
> Assistance
< Tolerance
Procedural Pain
Lower threshold
of active input
Higher threshold
for active input
Tolerance of immaturity
Higher
Lower
Coordination with federal Greater interface
with education
systems
Greater interface with
employment
Care provision
Interdisciplinary
Multidisciplinary
www.hrtw.org
# of patients
Fewer
Greater
Transition &….Medical Home
a collaborative partnership
www.hrtw.org
What is Medical Home Really? -01
 A Medical Home is a community-based,
primary care setting that integrates high
quality, evidence-based standards in
providing and coordinating family-centered
health promotion as well as acute and
chronic condition management.
www.hrtw.org
What is Medical Home Really? -02
 A subspecialist can provide a Medical
Home as long as all elements of the care
needs of the patient are addressed.
www.hrtw.org
Definition of Medical Home
Care that is:
•
•
•
•
•
•
•
Accessible
Family-centered
Comprehensive
Continuous
Coordinated
Compassionate
Culturally-effective
www.hrtw.org
and for which
the primary care
provider shares
responsibility
with the family.
Functional Definition of Medical Home
• Partnership between family and
providers
• Commitment to continuous quality
assessment and improvement
• Single point of entry to a “system” of
care that facilitates access to medical
and non-medical resources
www.hrtw.org
Family Definition of Medical Home
• It is an “Attitude”.
• Care Coordination addressing medical as
well as non-medical issues.
• Referrals to specialists who embrace
similar philosophies.
• Parent- Professional Partnership.
www.hrtw.org
Parent Advisory Group, Nashaway Pediatrics
Care Model for Child Health in a Medical Home
Adapted from Wagner, et al
Community
Resources
and
Policies
Health System
Health Care Organization (Medical Home)
Care
Partnership
Support
System
Design
Decision
Support
Informed,
Activated
Patient/Family
Supportive,
Integrated
Community
Family centered
Delivery
Timely &
efficient
Evidence-based & safe
Clinical
Information
Systems
Prepared,
Prepared,
Proactive
Proactive
Practice
PracticeTeam
Team
Coordinated and Equitable
Functional and Clinical Outcomes
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….
Celebrate the Paperwork!
It Means You are Alive!
- Reduce stress (one thing different)
- Better at adapting
- Increase problem solving skills
- Learn how to negotiate
www.hrtw.org
It Means You are Alive!
Create routine – make it a habit
LIVE: Brush teeth, bathroom, wellness
PLAN: Emergency/ practice
INFO: In the car, purse, trusted others
Supplies: 2 /1 in the car, 1 in the house
Basket by the door: important papers
(better yet-scan them)
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
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
www.hrtw.org
PUBLIC: Medicaid & SSI Connection
<18
Gather medical & other evidence
18 Redetermination
(based on adult standards)
How can providers help make it easier?
www.hrtw.org
Health Insurance: Public
“STUDENT CHILD” up to age 22
Effective April 1, 2005 Section 432 of the Social
Security Protection Act extended the student
earned income exclusion (SEIE) to any
individual under the age of 22 regularly
attending school, college, or training designed
to prepare him/her for a paying job, this
includes students who have IEPs.
https://s044a90.ssa.gov/apps10/poms.nsf/lnx/
0500501020
www.hrtw.org
Health Insurance:
SSI GATEWAY to Medicaid Benefits
Medicaid is automatic in all but 11 states
known as “209B States”
CT, HI, IN, IL, MN, MO, ND, NH, OK, OH, and VA
- State requires separate application to Medicaid
- State has at least one more stringent
requirement than the SSI rules for
Medicaid eligibility
www.hrtw.org
Growing Up Ready to LIVE!
1. Have a Dream then a Plan
2. Child/Youth is part of the community:
recreation, education and a buying consumer
3. Own identity
4. Skills: communication, negotiation, resilience
EQ (emotional quotient)
5. Health & Wellness for ALL family members
www.hrtw.org
What is a successful transition?
Youth are able to
• Access health services independently
• Discuss their health condition
• Communicate their health care needs
• Self-manage care or support is available
www.hrtw.org
What is a successful transition?
Youth are able to
(con’t.)
• Feel comfortable seeing
the doctor alone
• Make health care decisions
or support is in place
Young adults
• Have insurance
• Have health care that is developmentally
appropriate – primary, specialty, therapies, AT
www.hrtw.org
Transition to Adulthood
www.hrtw.org
What
would
you do,
if you
thought
you could
not fail?
www.hrtw.org
www.hrtw.org
www.hrtw.org
Patti Hackett, MEd
Co-Director, HRTW Center
Bangor, ME
[email protected]
Ceci Shapland, RN, MSN
HRTW Family/Youth Consultant
Vadnais Heights, MN
[email protected]
www.hrtw.org
Resources-01
HRSA/MCHB funded National Centers (6)
1. HEALTH & TRANSITION
www.hrtw.org
Healthy & Ready to Work National Resource Center
2. MEDICAL HOME
www.medicalhomeinfo.org
National Center on Medical Home Initiatives
3. FAMILY PARTNERSHIP
www.familyvoices.org
National Center on Family and Professional
Partnerships
www.hrtw.org
Resources-02
HRSA/MCHB funded National Centers (6)
4. CULTURAL COMPETENCE
http://www11.georgetown.edu/research/gucchd/nccc/
National Center for Cultural Competence
5. HEALTH INSURANCE
http://www.hdwg.org/cc/
Catalyst Center – for Improving Financing of
Care for CYSHCN
6. DATA
www.cshcndata.org
Data Resource Center National Survey for CSHCN
www.hrtw.org
Resources - 03
HEALTHY & READY TO WORK www.hrtw.org
• HRTW Portable Medical Summary - One page summary of
health needs that youth or others can carry. Information contains
medical history, current medication, name of health surrogate,
health insurance numbers, contact information for treating doctors,
pharmacy, home health and other vendors.
• Understanding Health Insurance - Web links to Choosing a
Plan, Paying for Care, Public Insurance, Private Insurance, Policy /
Advocacy Centers and Insurance Regulations, Laws and Statutes.
• Decisions & Making Choices - Web section contains
information of Informed Decision Making, Assent-Consent,
Guardianship, Living Wills and Advance Directives.
www.hrtw.org
Resources - 04
HRTW Portal - Laws that Affect CYSHCN
http://www.hrtw.org/tools/laws_leg.html
• The Term Special Health Care Needs or
Disability
• Disability Rights Portals
• Education Issues
• Employment & Disability
• Equal Opportunity Access (504, 508 & ADA)
• Family Medical Leave Act
• HRSA/MCHB – Title V Legislation
• Health Insurance Benefits
• SSI/SSDI
www.hrtw.org
Resources - 05
ADOLESCENT HEALTH TRANSITION PROJECT Washington
http://depts.washington.edu/healthtr/index.html
•
Transition Timeline for Children and Adolescents
with Special Health Care Needs. Transitions involve
changes: adding new expectations, responsibilities, or
resources, and letting go of others. The Timeline for
Children may help you think about the future.
•
Working Together for Successful Transition:
Washington State Adolescent Transition Resource Notebook
- Great example to replicate.
•
Adolescent Autonomy Checklists
www.hrtw.org
Resources - 06
HEALTH AND HEALTHCARE IN SCHOOLS
http://www.healthinschools.org/ejournal/2003/privacy.htm
The Impact of FERPA and HIPAA on Privacy Protections for
Health Information at School. Sampling of the questions
from school nurses and teachers.
NICHCY - National Dissemination Center for Children
with Disabilities www.nichcy.org
Materials for families and providers on: IDEA, Related
Services and education issues – in English/Spanish
Section 504
http://www.ed.gov/about/offices/list/ocr/504faq.html
www.hrtw.org