Transcript Healthy and Ready to Work - Syntiro

What’s Health Got to Do With Transition?
EVERYTHING!
Patti Hackett, MEd
Co-Director, HRTW Center
Bangor, ME
“Real Options Making the Move”
Statewide Conference on Transition
October 16 – 17, 2006
www.hrtw.org
Sweetest Day!
3rd Saturday in the month of October, Sweetest Day
observance originated in Cleveland in 1922.
Herbert Birch Kingston, a philanthropist and candy company
employee wanted to bring happiness into the lives those who
were forgotten.
Thank-YOU
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
HRTW website:
www.hrtw.org
www.hrtw.org
Patti Hackett, MEd
Co-Director, HRTW Center
Bangor, ME
[email protected]
www.hrtw.org
HRSA/MCHB
State Title V CSHCN Programs
•
1935 - Congress passed the Social Security
Act, a law designed to bring some financial
and health security into the lives of America's
most vulnerable citizens.
•
Title V creates Children with Special Health
Care Needs (CSHCN) in every state, the
District and territory
•
Healthy People 2010 Objective 16-23
“Increase the proportion of States and
territories that have service systems for
CSHCN.”
www.hrtw.org
Arc of Illinois
Family to Family Health
Information and Education Center
www.thearcofil.org/familytofamily/index.asp
•Info and referral services
•Health-related training opportunities
•Specialized training for leaders
•Links - local, regional, statewide and national
Faye Manaster
708-560-6703 / Toll Free: 866-931-1110
Illinois Relay: Dial 711
www.hrtw.org
E-mail: [email protected]
http://www.uic.edu/hsc/dscc/
Darcy Contri
[email protected]
http://internet.dscc.uic.edu/dsccroot/parents/transition.asp
•Transition Information Sheet for Families
•Transition Worksheet for Parents, Youth
•Transition Timeline
•Health Care Checklist
•School to Work Checklist
•Preparing for the Future: Transition to Adulthood
•Questions to Ask Potential Adult Care Physicians
•Bridging the
Gap Between Pediatric and Adult Services
www.hrtw.org
Growing Up Ready to LIVE!
Health & Wellness + Humor
www.hrtw.org
Take Home Points
1. Know the resources.
2. Make the personal connections.
3. Why not TRY….Be open to new ideas.
(have the old ways really worked?)
4. Transition Plan starts in utero.
Changes at Dx and Cx in health status.
5. Health & Wellness make the difference!
www.hrtw.org
Little Miss-Matched
5M
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
NFI: Delivering on the Promise p. III-39
HRSA's MCHB will take the lead in developing
and implementing a plan to achieve appropriate
community-based services systems for
CYSHCN and their families.
Barrier Addressed by Solution / Access to:
1. Comprehensive, family-centered care
2. Affordable insurance
3. Early and continuous screening for SHCN and
4. Transition services to adulthood
www.hrtw.org
Surgeon General’s Call for Action
Improve the Health and 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 and 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
DATA: Nationwide
Nationwide
9.4 million (13%) <18
Title V CYSHCN
963,634
0-18*
SSI Recipients
1,036,990
0-17
386,360
13-17
Sources:
1.
www.cshcndata.org
2.
Title V Block Grant FY 2006, www.mchb.hrsa.gov
* Most State Title V CSHCN Programs end at age 18
3.
SSA, Children Receiving SSI, December 2005, www.ssa.gov
www.hrtw.org
DATA: Illinois
Title V CYSHCN
22,359 0-18*
SSI Recipients
44,387 0-17
17,455 13-17
Special Education
283,742 6-21
Graduation 78.5%
Sources:
Illinois State Board of Education Annual Report, 2004
http://www.isbe.state.il.us/speced/pdfs/Annual_Report_2004.pdf
www.hrtw.org
SSI Recipients Who Work: 18-29
IL
13,534
IL: # 34
75
Nationally
<18
18-21
22-29
3,314
32,658
79,819
135
2,139
4,752
185
3,176
19,252
3
65
321
1.0%
9.7%
23.7%
Incentives
Gross earnings above SGA
$860
1619 a
Work + SSI Benefits
3,044
31
1619 b
no SSI + Medicaid
PASS
SSI+ Dedicated Savings
210
IRWE
5
312
2.042
255
BWE
4
111
619
www.hrtw.org
CORE National Performance Measures
1.
2.
3.
4.
5.
6.
Screening
Family
Medical Home
Health Insurance
Community Services
Transition
SOURCE: BLOCK GRANT GUIDANCE
New Performance Measures See p.43
ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf
www.hrtw.org
Transition & ……Screening
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 Life Areas
How does health affect:
•
Employment
•
Leisure, Recreation
•
Community:
•
Higher Education or Training
www.hrtw.org
transportation, housing, activities
Screen for ALL Health Needs
•
Hygiene
•
Nutrition
•
Oral Health
•
Sexuality Issues
•
Mental Health
•
Routine
www.hrtw.org
(Stamina)
(“Doing IT,” GLBTQ)
(Immunizations, Blood-work, Vision, etc.)
Transition & ……Family & Youth
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
F1 = HELP button
•Life-Long Learning
•Lessons from Marketing, Business
•Email - Group Think Tank
•Create-Wisdom Council, Solutions Bank
www.hrtw.org
1. Know Your Health & Wellness Baseline
- How does your body feel on a good day?
- What is your typical body temperature, respiration
count, pulse and elimination habits?
2. Create 1 page Portable Medical Summary
- Use as a reference tool
- accurate medical history and contact numbers.
- Carry in your wallet.
-Use for disability documentation
www.hrtw.org
3. Teach Skills EARLY!
Survive & Thrive!
- Encourage questions at each visit.
- 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
Getting Ready to Move On
The Difference - the difference between
pediatricians and adult providers.
Finding a Doctor – ask around - who may match
styles in co-managing health care.
Finding a Match - Encourage youth to interview
the physician and check out the practice and
hospital before the official transfer.
Keeping Insurance - Check health care insurance
plan. Do this before age 18.
www.hrtw.org
Transition &….Medical Home
www.hrtw.org
Shared Decision Making
Provider
Major
responsibility
Parent/Family
Provides care
Young Person
Receives care
Support to
Manages
parent/family
and
child/youth
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 & …. Health Care
www.hrtw.org
Health?? Services - Payor
(more than Medicaid)
HEALTH
• Wellness
HEALTH CARE SERVICES
• Medical Home
• Primary Care
• Care Coordination
HEALTH INSURANCE
• Public (Medicaid to Medicare)
• Private (Family Plan/Self)
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
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 1 more stringent requirement
than the SSI rules for Medicaid eligibility
www.hrtw.org
PUBLIC: Medicaid & SSI Connection
<18
Gather medical & other evidence
18 Redetermination
18-22
(based on adult standards)
Adult Student
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
PRIVATE: Adult Disabled Dependent
< 18
- Check Policy -- Family Plan
40+ states have insurance law
Requires documentation
IL Code Sections 5/356b, 5/367b
- from Ch. 73, par. 968b
• Incapable of self-sustaining employment
• dependent- lifetime care /supervision
www.hrtw.org
Transition to Adulthood
www.hrtw.org
TRANSITION POLICY
50% policy to transition youth ages 16-25
ASSENT & CONSENT
18% written policy legal responsibility
medical decisions & health records
> 18
Of these practices
- 71% seek verbal assent
·- 25% seek written assent
www.hrtw.org
28 from 17 states
25 pediatricians; 2 Med-Peds, 1 Family Physician
AAP-CATCH grants, MCHB Integrated Services Grants, Medical Home Learning collaboratives, Medical
Home projects, AAP listserve, LEAHs – most are physicians participating in medical home projects.
TRANSITION POLICY
50% have a policy to transition youth ages 16-25
54% coordinating transition activities
ASSENT & CONSENT
18% written policy - legal responsibility for
medical decisions and health records prior to
age 18. Of these practices
- 71% seek verbal assent
·
www.hrtw.org
- 25% seek written assent
FINDING INFORMATION
Practices get transition information from:
54%
self-directed research
57%
staff-based care coordinator
46%
family to family support groups
Referral to Other Transition Supports
Practices seldom refer to other transition supports
www.hrtw.org
What
would
you do, if
you
thought
you could
not fail?
www.hrtw.org
Take Home Points
1. Know the resources.
2. Make the personal connections.
3. Why not TRY….Be open to new ideas.
(have the old ways really worked?
4. Transition Plan starts in utero.
Changes at Dx and Cx in health status.
5. Health & Wellness make the difference!
www.hrtw.org
Patti Hackett, MEd
Co-Director, HRTW Center
Bangor, ME
[email protected]
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)
 www.hrtw.org
Family Medical Leave Act
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:
•
www.hrtw.org
Adolescent
Autonomy Checklists
Washington State Adolescent Transition Resource Notebook
- Great example to replicate.
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