Transcript No Slide Title

What’s HEALTH
Got to Do with Transition?
EVERYTHING!
Patti Hackett, MEd
Co-Director
HRTW National
Resource Center
HRTW Team
Title V Leadership
Medical Home & Trans
Toni Wall, Kathy Blomquist
Dr. Rich Antonelli
Dr.Patience White
Betty Presler
Federal Policy
Patti Hackett & Tom Gloss
Family, Youth & CC
Ceci Shapland & Trish Thomas
Interagency
Debbie Gilmer
HRTW University
Jon Nelson
HRTW website:
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.
Overview

Federal Mandates (follow the money)

Policy into Practice

Tips & Tools

Discussion: Qs & As
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)
Disabled??
Special Health Care Needs?
HEALTH SERVICES
- Children & Youth with Special Health Care Needs (CYSHCN)
- Genetic
- Chronic Health Issues
- Acquired
EDUCATION SERVICES
- Youth with Disability
- Youth with Health Impairment
ADA & 504
- Disability and/or Health Impairment
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.”
CYSHCN
9.4 million (13%) <18
Title V CYSHCN:
www.cshcndata.org
963,634 (0-18*)
SOURCE: Title V Block Grant FY 2006 Application
* Most State Title V CSHCN Programs end at age 18
SSI Recipients
1,036,990
ages 0-17
MA - 17,975
386,360
ages 13-17
MA – 7,061
SOURCE: SSA, Children Receiving SSI, December 2005
SSI Recipients Who Work
285,640
520,247
5,977,788
< 18
18-21
22-29
3,314
32,658
79,819
MASSACHUSETTS
PASS
1.0%
11.4%
15.3%
129,792 (7.3%)
80
Plan to Achieve Self Support
IWRE
1619 work incentives
168
3,444 3.17% #16
SOURCE: SSA, SSI Disabled Recipients Who Work, 2005
Federal Mandates

Supreme Court decision - Olmstead (1999)
Affirmed the right of individuals with disabilities to
live in the community rather than in institutions
whenever possible.
Full integration - a reality for people with disabilities –
means not only changing existing practices that favor
institutionalization over community-based treatment, but
also providing the affordable housing, transportation, and
access to state and local government programs and
activities that make community life possible.
Federal Mandates

The President’s New Freedom
Initiative (2001)
Responsibility given to HRSA for
developing and implementing a
community-based service system
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
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
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.
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.”
MCHB & State Title V CSHCN
Federal Mandates

Block Grant Performance Measures
Government Performance and Results Act
(GPRA) of 1993 (Public Law 103-62).
Measurable goals for Federal programs that can
be reported as part of the budgetary process,
thus linking funding decisions with
performance.
State Title V CSHCN Block Grant
National Performance Measures
To help states develop effective
mechanisms to achieve a system of care
for all children with special health needs
and their families by 2010, six national
performance measures (NPM) will serve
as a guide to states in meeting this goal.
SOURCE: BLOCK GRANT GUIDANCE
New Performance Measures See p.43
ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf
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
Title V Block Grant:
National Performance Measure #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)
Transition & ……Screening
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
Screen for Life Areas
How does health affect:

Employment

Leisure, Recreation

Community:

Higher Education or Training
transportation, housing, activities
Screen for ALL Health Needs

Hygiene

Nutrition (Stamina)

Exercise

Sexuality Issues (“Doing IT,” GLBTQ)

Mental Health

Routine (Immunizations, Blood-work, Vision, etc.)
Transition & ……Family & Youth
Health &…..Work
(starts early)
HOME

Chores - Role in the family

Community Experiences
SCHOOL

Attendance (on time and wellness)

Real Skills for the real world
DOCTORs OFFICE

Health …… staying well for longer periods

Maximize: stamina, mobility, communication
Health &…..Work
(starts early)
Aspirations & Expectations

YOUTH INVOLVEMENT – Increasing overtime

INFORMED DECISION MAKING – Voice heard

POSSIBILITIES – Opportunity to try

HEALTHY - How to stay well for longer periods
Transition &….Medical Home
What is a Medical Home?
It’s not a building, house or hospital
Medical Home is an approach…..
providing comprehensive primary care
- accessible
- continuous
- comprehensive
- family centered
- coordinated
- compassionate
- culturally effective
The National Center of Medical Home Initiatives
www.medicalhomeinfo.org
Consensus Statement:
Health Care Transition
(Sept. 2001)
American Academy of Pediatrics
American Academy of Family Physicians
American College of Physicians-American Society of Internal Medicine
CONSENSUS STATEMENT calls on physicians to:
1. Understand the rationale for transition
from child-oriented health care
2. Have the knowledge and skills to facilitate
that process
3. Know if, how, and when transfer of care
is indicated
(Pediatrics 2002:110 (suppl) 1304-1306)
Consensus Statement:
Health Care Transition
(Sept. 2001)
4. Maintain an up-to-date portable
medical summary
5. Create a written health care
transition plan by age 14: what
services, who provides, how financed
(Pediatrics 2002:110 (suppl) 1304-1306)
YOUTH are 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
Shared Decision Making
Provider
Parent/Family
Young Person
Major
responsibility
Provides care
Receives care
Support to
parent/family
and
child/youth
Manages
Participates
Consultant
Supervisor
Manager
Resource
Consultant
Supervisor
Informed Decision Makers
FERPA
Family Education Rights & Privacy Act
HIPAA
Health Insurance Portability and
Accountability Act
1. Privacy – Records
2. Consent – Signature (signature stamp)
o Assent to Consent
o Varying levels of support
o Stand-by (health surrogate)
o Guardianship (limited to full)
Tools: Portable Medical Summary
• Medical Evidence/Documentation
- qualify for program eligibility
- obtain funding/reimbursement
• One page – Reference Sheet
- contact info (person, health surrogate, doctors, vendors)
- communication / learning
- prioritize health issues
- medications
- equipment
Take the PAIN out of Paperwork
• Welcome & celebrate the paperwork
It means you are alive!
• Portable Medical Summary
• Prepare top part of insurance forms
- make copies
- submitted claims, track payment
Transition & …. Health Care
Transition & ……Insurance
NO HEALTH INSURANCE

2 out of 5 college graduates

1/2 of HS grads who don’t go to college

40% age 19 - 29 - uninsured during the year

2x rate for adults ages 30-64
(first year after grad)
SOURCE: Commonwealth Fund 2003
PUBLIC: Medicaid
MAINTAIN MEDICAID
- Passed SSI Redetermination - continue benefits.
DROP FROM MEDICAID
- Former childhood SSI recipient at age 18 did not qualify
under SSI redetermination and loses benefits (income too
high or does not meet disability criteria.)
NEW to MEDICAID
- Child did not qualify for SSI under 18 due to family income.
Age 18 may qualify for SSI and Medicaid as an adult single
head of household.
PUBLIC: SSI/Medicaid Loop Hole
NOT APPROVED - PROVISION TO CONTINUE
RECEIVING SSI BENEFITS
• SECTION 301 - Individuals found ineligible
during redetermination may continue to receive
SSI benefits IF they began receiving state
vocational rehabilitation agency services before
their 18th birthday. Section 301 allows the
young adult to retain benefits while he/she
participates in approved voc rehab program or
IEP.(7/2005)
http://policy.ssa.gov/poms.nsf/lnx/0412515001
Medicaid while Working
WORKING - Continued Medicaid Eligibility
Section 1619(b)
- still meets SSI criteria,
- needs Medicaid in order to work; and
- gross earned income is insufficient to pay for
other public supports.
MEDICAID BUY-IN via TICKET TO WORK
- Worker could opt to buy-in and receive Medicaid
benefits. Program is too new to assess if states
are providing full benefit packages and at what
level of sliding fee.
PRIVATE: Family, Employer or Solo
MAINTAIN BENEFITS via FAMILY PLAN
• Adult Disabled Dependent Child
• Student Status
Pays for health care benefits plan through:
•
•
•
•
•
College - student plan
Employed - group plan
Self-pay: single plan
Ticket to Work (Medicaid Buy-in)
COBRA
Transition to Adulthood
Glen, age 30 - professional turf
writer and thoroughbred racing
analyst. One of only 6 people who
provided Beyer Speed Figures for
the Daily Racing Form.
Doctors predicted that he wouldn’t
live to see his 2nd birthday due to
SMA. He outlived his Doctor.
He used a motorized wheelchair to
move, a portable ventilator to
breathe and voice activated software
to work at a computer, and acted as
if these were minor inconveniences.
“I’m just a person who needs more
equipment.”
Insurance: Court ordered Private
through Father & Step-mother
Transition to Adulthood is
successful when …..

Youth Leaders are partners in policy
review and development
Youth have:

PARTNERS - Voice and are heard in their
own health care decisions

QUALITY - Medical care that meets their
needs and developmental issues

CARE - Insurance that is not in jeopardy due
to getting older or working
[email protected]
Patti Hackett, MEd
Co-Director
HRTW National
Resource Center