Whats Health Got to do with Transition EVERYTHING

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HRSA/MCHB Grantee Mtg - April 2004
Whats Health Got to do with Transition?
EVERYTHING!
Patti Hackett, M.Ed. Team Lead
Co-Director Washington, DC telework office
Ocala, FL
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How many CYSHCN?

• 10.3 million (13) lt18
• SOURCE Blumberg 2003 - Estimating the
  Prevalence of Uninsured Children An
• Evaluation of Data from
  the National Survey of CSN, 2001.
• Title V CYSHCN 1,255,152 (0-18)
• SOURCE Title V Block Grant FY 2002
  Application
• Most State Title V CSHCN
  Programs end at age 18
• SSI Recipients 959,379 ( 0-17)
• 321,114
  (13-17)
• 243,689
  (18-21)
• 460,019 (22-29)
• SOURCE SSA, Children Receiving SSI, December
  2002, 2003

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MCHB State Title V CSHCN Federal Mandates

• Amended Legislation for Title V of the Social
  Security Act (1989)
• Facilitate the development of community-based
  systems of services
• Healthy People 2010 Objective 16-23
• Increase the proportion of States and
  territories that
• have service systems for CSHCN.

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MCHB State Title V CSHCN Federal Mandates

• The Presidents New Freedom Initiative (NFI)
• Responsibility given to HRSA for developing
  and implementing a community-based service
  system. (2001)
• Supreme Court Decision gt Olmstead
• Affirmed the right of individuals with
  disabilities
• to live in the community rather than in
  institutions
• whenever possible

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MCHB State Title V CSHCN Federal Mandates

• Delivering on the Promise
• The report summarizes agency activities that
  support Olmsteads goal of integration,
  identifies barriers that exist within programs to
  full implementation of Olmstead, and proposes
  more than 400 solutions aimed at removing these
  barriers.
• "HRSA's MCHB (page III-39) 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.

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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.

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BLOCK GRANT National Performance Measures

• NPM 6
• 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
• 2003 - New Performance
  Measures See p.43
  ftp//ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pd
  f

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BLOCK GRANT National Performance Measures

• 1. Screening
• 2. Family
• 3. Medical Home
• 4. Health Insurance
• 5. Community Services
• 6. Transition
• SOURCE BLOCK GRANT GUIDANCE
• 2003 - New Performance
  Measures See p.43
  ftp//ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pd
  f

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HRSA/MCHB National Performance Measure 6

• TRANSITION TO ADULTHOOD
• Youth with special health care needs (YSHCN)
  will receive the services necessary to make
  transitions to all aspects of adult life,
  including adult health care, work, and
  independence. (2002)

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Outcomes Performance Measure 6 Transition to
Adulthood

• HRTW Systems Development
• Youth Participation in Decision Making
• Accessible Affordable Health Insurance
• Medical Home / Adult Health Care
• Education, Employment, Independent Living
• and Recreation

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HRTW Team Experienced, Creative Can Do!
MCHB/DSCSHN- Monique Fountain, MD
PACER,MN - Ceci Shapland
AED-DC - Carol Valdivieso Cynthia Glimpse AED-FL
- Patti Hackett
info_at_hrtw.org
Comm for CSHCN, KY- Kathy Blomquist Shriners
Hospitals for Children - Betty Presler
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HRSA/MCHB funded HRTW Projects

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Health Affects Everything!!

• Health .. Employment
• Health .. Housing
• Health .. School
• Health .. Community Living
• Health .. Recreation
• Health .. Inclusive opportunities

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It is not just about special health needs!
T T

• Health includes
• Hygiene
• Nutrition
• Exercise

• Sexuality issues
• Mental health
• Aging issues

Assistive Technology . Health Surrogate, Adult
Health Care .. Advance Directives
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Whats important to YSHCN

• What to do in an emergency
• How to get health insurance
• What could happen if condition gets worse
• Learning to stay healthy
• SOURCE PACER Survey - over 1300 YSHCN (1997)
• The National Youth Leadership
  Network Survey (2001)

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Transition ... Screening
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Transition ... Screening

• SCREEN Health and life transition needs
• SECONDARY DISABILITIES
• - Prevention/Monitor
• - Mental Health, High Risk Behaviors
• AGING DETERIORATION
• - Info long-term effects (wear tear Rx,
  health cx)
• - New disability issues adjustments

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Transition Family Involvement

• Insert picture

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Family Youth Involvement Informed Decision
Makers

• YOUTH AND FAMILY-CENTERED - Start early, Plan
  Ahead
• YOUTH INVOLEMENT - Participation in Decision
  Making. Supporting aspirations - raising
  expectations.
• YOUTH LEADERSHIP - Shaping Influencing Policy
• Compensated partners.
• AGE WITHOUT JEOPARDY - Waivers Insurance

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Youth Centric Health Care

• Youth has knowledge of condition
• (sharing unbiased and complete info)
• Youth makes decisions on health care
• Physicians speak to youth PRIVATELY
• (meets developmental needs)

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Youth Centric Health Care

• Promote youth to youth mentoring and support
  (consumer to consumer support)
• Design a flexible, accessible, responsive Youth
  friendly atmosphere
• (Accessibility-physical, appointment times,
  etc.)

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Youth Centric Care

• Informed decision-making
• TEACH about special health needs, possible
  changes, emergency plans
• LEARN about general health
• USE RESOURCES to support learning-school IEP, 504
  and employment

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Transition . Medical Home
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Transition Role of Physician
The physicians prime responsibility is the
medical management of the young persons 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 12363-374

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Transition ... Medical Home

• Maintain an up-to-date portable medical summary
• IHTP - Create a written health care transition
  plan
• by age 14 what services, who provides, how
• financed
• Apply primary preventive care guidelines
• Ensure affordable, continuous health insurance
• that includes transition planning care
• coordination.

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Promote Skills Self Advocacy

• Knowing your health needs
• Asking for what you need
• Talking with the doctor
• choosing a doctor
• preparing for visits
• Knowing the law
• Learning using problem solving skills

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Transition . Access to Health Care Financing
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Transition ... Health Care Insurance
NO HEALTH INSURANCE first yr after
graduation 40 college graduates 50 high school
graduates who dont go to college NO HEALTH
INSURANCE 40 between 19 - 29 will be uninsured
during the year 2x twice rate of adults
ages 30 to 64 SOURCE Commonwealth Fund 2003
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What is happening now?

• YSHCN
• 45 Lack access to physicians familiar
• with their health condition
• 40 Lack a payment source for
• needed health care
• SOURCE 1997 survey of young adults served by
• the MCHB / Shriners Hospital
  CHOICES Project

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PUBLIC Health Care Benefits Changes at Age 18
(1)

MAINTAIN MEDICAID - Passed SSI Redetermination
- continue benefits. - Emancipated Minor - by
marriage or court decision may qualify or
continue Medicaid due to income or disability
status. 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.)

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PUBLIC Health Care Benefits Changes at Age 18
(2)
NOT APPROVED - PROVISION TO CONTINUE 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. Http//policy.ssa.gov/poms.nsf/lnx/04125
15001

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PUBLIC Health Care Benefits Changes at Age 18
(2)
NEW to MEDICAID - Child did not qualify for
SSI under 18 due to family income. At age 18
may qualify for SSI and Medicaid as an adult
single head of household. NOTE 209B States,
require separate application to Medicaid, not
linked to SSI. 11 States have elected to have at
least one more stringent requirement than the SSI
rules for Medicaid eligibility CN, HI, IN, IL,
MN, MO, ND, NH, OK, OH, and VA. 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.

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PUBLIC Health Care Benefits Changes at Age 18
(3)
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. via innovative / expanded
SCHIP (Maine) - MaineCare for Childless Adults -
Pays insurance premiums who meet certain
criteria. - Use employer-sponsored insurance for
the expansion

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PRIVATE Health Care Benefits Changes at Age 18
MAINTAIN HEALTH CARE BENEFITS via FAMILY
PLAN 1. ADULT DISABLED DEPENDENT CHILD
Youth over 18 may continue on family plan if
dependent for life. Must be on the family plan
prior to turning 18. (Legal Statute 40
states) - no substantial gainful employment
- annual re-certification - disability
dependent 2. STUDENT STATUS - Proof of
college classload each semester. - Ages
18-22, sometimes older

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Health Care Benefits Youth Pays Premiums

• College - student plan
• Employed - group plan
• Self-pay single plan
• Ticket to Work (Medicaid Buy-in)
• COBRA
• High Risk Pool
• Concern What happens if health status changes
  and affects continuous employment or attending
  school? There is no safety-net or easy on/off for
  health care benefits.

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Transition ... Community-Based Service Systems
37
Lessons Learned HRTW Phase I (1)

• COORDINATION - A transition coordinator is
  essential.
• COLLABORATION between the pediatric and adult
  providers is critical for successful health care
  transition.
• SCHOOL NURSES can play an important role if time
  is allocated for that purpose.
• EDUCATION is a key collaborator, but cooperation
  depends on many variables.

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Lessons Learned HRTW Phase I (2)

• EXPECTATIONS ASPIRATIONS - Youth routinely
  encounter low performance expectations from
  health care providers and other professionals.
• YOUTH-CENTERED - Too many health care
  professionals direct communications to parents
  rather than youth.
• assent gt consent
• SELF-DETERMINATION - Teaching self-determination
  skills is valuable allow youth to speak for
  themselves.

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HRTW TEAM info_at_hrtw.org www.hrtw.org
MCHB Project Officer Monique Fountain, MD
mfountain_at_hrsa.gov HRTW National
Center Patti Hackett
pattihackett_at_hrtw.org Kathy Blomquist
kathyblomquist_at_hrtw.org Ceci Shapland
cecishapland_at_hrtw.org Betty
Presler bettypresler_at_hrtw.or
g Cynthia Glimpse
cglimpse_at_aed.org
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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 wouldnt
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. Im just a person who needs
more equipment. Insurance Court ordered
Private through Father Step-mother