What

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Whats Health and Social Services Got to Do with
Employment?

• December 3, 2007 -- 130-300 eastern

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GOALS1. Recognize health and wellness impacts
performance and productivity (employment
sustainability) 2. Understand the need to
prepare youth for the difference between
entitlement and eligibility programs and services
prior to aging into adulthood.
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GOALS   3. Strengthen connections to
consumer and state based social service supports
that can facilitate in maintaining or achieving
full potential for self-direction, self-reliance
and independent living. 4. Increase awareness
of state based health supports, resources and
services and mandates (private insurance)
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Speakers Presentation Order
Elizabeth McGuire Health Policy Analyst,
HRSA/MCHB Project Officer-HRTW Initiative Rockvill
e, MD Patience H. White, MD, MA, FAAP Medical
Advisor, HRTW Center Chief Pubic Health Officer,
Arthritis Foundation Washington, DC Theresa
Glore, MS Title V Consultant, HRTW
Center Louisville, KY
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Speakers Presentation Order
Donene Feist Executive Director, Family
Voices-North Dakota Director, Family to Family
Health Information and Education Center Edgeley,
ND Tom Gloss Federal Policy Consultant, HRTW
Center Finksburg, MD Patti Hackett,
MEd Co-Director, HRTW Center Bangor, ME
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Transition to Adulthood Welcome from
HRSA/MCHB Mandates and Initiatives Elizabeth
McGuire
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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.

                                                 
                     
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Federal National Initiatives

• Federal Mandates
• OBRA 89
• MCHB National Performance Measures, 1999
• New Freedom Initiative (NFI), 2001
• National Initiatives
• Surgeon Generals Conference-Koop, 1984 1989
• Healthy People 2000 2010
• Consensus Statement on Health Care Transitions
  for YSHCN, AAP/AAFP/ACP-ASIM, 2002
• Surgeon Generals Call to Action to Improve
  Health Wellness of Persons with Disabilities,
  2005

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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.
• HRTW initiative has added YOUTH to CSHCN/CYSHCN
  since 1996.
• 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

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MCHB National Performance Measure 6

• NPM6 To assure that CYSHCN receive the
  services necessary to transition to all aspects
  of adulthood including, adult health care,
  employment, and independence.

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Take Home MessagesPOLICY PRACTICES

• There are policies and practices that support
  transition and health!
• FEDERAL Policies become laws/mandates
• Often grant follows
• STATE Title V CSHCN Health Programs
• up to ages 18-21
• MEDICAL They are ALLIES!

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Transition to Adulthood Its about Health
Wellness plus preparation Dr. Patience White
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Health Impacts All Aspects of Life

• Health is a resource for life Success in the
  classroom, within the community, and on the job
  requires that young people are healthy even if
  they have a disability.
• To stay healthy, young people need an
  understanding of their health and to participate
  in their health care decisions.

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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

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Youth are Talking Are we listening?

• Survey - 1300 YOUTH with SHCN / disabilities
• Main concerns for health
• What to do in an emergency,
• Learning to stay healthy
• 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
• SOURCE National Youth Leadership Network
  Survey-2001
• 300 youth leaders disabilities

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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 .that often do
not communicate.
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Internal Medicine Nephrologists (n35)
Maria Ferris, MD, PhD, MPH, UNC Kidney Center
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Health Wellness Being Informed

• 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.
• SOURCE Ansell BM
  Chamberlain MA. Clinical Rheum. 1998 12363-374

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Medical Home

• Its not a
  building,
• house or
  hospital
• It is an approach.. providing comprehensive
  primary care
• Consensus Statement Health Care Transition
  (Sept. 2001)
• Maintain portable medical summary

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Screening

• 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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Youth are less interested in any transition
organized around medical issues and more
interested in a transition to financial and
social independence. 13 year olds made the most
improvement with least amount of resource
investment. Social Work and Research, 2007
Adolescent Employment Readiness Center (AERC)
Research Results
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2002 AERC/SSA Program cohort selection/evaluatio
n

• 1510 fliers mailed by health insurance to social
  security income recipients 12 -18 years in DC
• Diagnosis SSI Qualify 80 MR,LR, CP
• 40 co morbidity with CI (e.g. asthma,
• diabetes, CTD)
• Measures used with age matched norms available
• Ansell-Casey Life Skills Assessment (ACLSA) both
  youth and Caregiver
• Career Maturity Index (CMI)
• Pediatric Quality of Life Scale (PQLS)-health
  measure

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AERC RESULTS

• After 3 years in AERC program, participants
  receiving AERC services have
• - more education
• - more paid work experience
• - more likely to leave SSI
• Improved health from youths point of view
• more likely to have an adult primary care
  physician
• ROI of program 1 youth leaving the SSI rolls
  pays for 1 Year of the program!
• Wolf-Branigin,
  Schuyler, White Research in Social Work, 2007

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Health Affects Everything!CASE Study

• Joes Story 19year old with DD and seizures
• Volunteer job experiences
• High school diploma
• Own apartment
• Good social life
• Then what.???

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Assessing Health in TransitionEmployment

• Does Joes health condition dictate certain work
  conditions?
• Will Joes medication affect his job duties?
• Should he disclose his health condition to the
  employer?
• Does his health dictate hours of work?

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Assessing Health in Transition Post Secondary
Education

• Does Joe need to take his medication while in
  class or at work?
• How will it affect his performance?
• Will Joe need accommodations in his schedule for
  medical treatments and/or appointments?
• Visit to DDS

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Assessing Health in Transition Home Living

• Does Joe .
• understand his seizure disorder?
• carry his own emergency medical information?
• understand the side effects of his medication?
• have an emergency plan?
• have health insurance?

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Assessing Health in Transition Community Life

• Does Joe ..
• have an adult health care practitioner/know who
  should be on his medical team?
• know how to communicate his health care needs?
  Have a portable medical record?
• know when, how and where to fill a prescription?
• know how to travel to the doctor or drugstore?
  Does he have transportation?

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Assessing Health in Transition Leisure-Recreation

• Does Joe understand the effects of recreational
  drugs or alcohol on his health and seizure
  disorder?
• Will his medication or health condition affect
  his choice of activities?

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9 Easy steps to Plan a Successful Transition

• EXPECTATIONS Talk with child/youth/ family about
  expectations for the future. Think about the
  future in 1-2 year segments.
• TEACH Re-teach about the health condition and
  needed services based on changing cognitive
  development develop portable medical record
  provide prognosis/ natural history data
• OPINION Ask the opinion of your young
  patientsget their ideas respect
  confidentialitybe open and honest.. listen and
  be askable involve in decision making (assent
  to consent, give them a sense of competence)

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9 Easy steps to plan a Successful Transition

• CHORES Are they doing chores? Independence
  skills start with having responsibilities in the
  family
• ATTENDANCE consistent attendance at school leads
  to a pattern of consistent attendance on the job
  and likely hood of attendance to post secondary
  school.
• PLANNING Transition planning is key - more than
  a referral-clarify roles for all involved/outline
  developmental steps to independence in caring for
  their own health/ have a plan for health
  insurance

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9 Easy steps to plan a Successful Transition

• PARTICIPATION Ask about social/ leisure
  activities and strategize how they can
  participate more fully acknowledge teen
  lifestyle
• CAREER Ask about volunteer opportunities in the
  community (keep on work developmental
  milestones), paid work lt 20 hours/week
• STAY WELL key to being part of the action for
  all players

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Transition to Adulthood Connecting State
Supports Social Services Theresa Glore
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Living Well with a Disability
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Outcome Realities for YSHCN

• 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 lt
  15,000
• SOURCES CHOICES Survey, 2000 and NCD Lou Harris
  Poll, 2000

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Time Jan 2004
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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)

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• FACT IT DOES TAKE A VILLAGE!!!!
• In helping youth young adults to
• Transition, we must build a community of
• Support. Our role is to
• MENTOR
• EDUCATE/ INTRODUCE
• FACILITATE ACCESS
• FOLLOW-UP

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• ON THE ROAD TO INDEPENDENT LIVING, We help youth
  young adults to
• Get Started-- Plan, Prepare, Act
• Plan For Contingencies
• Plan For The Long-term
• and differentiate between resources/services
• that may be needed now--but should be thought
• of as only temporary

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Community Supports for Independent Living

• Independent Living Centers Non-profit, consumer
  controlled, community based organizations.
  Services include information referral
  independent living skills training, individual
  systems advocacy, and peer counseling.
  http//www.ilru.org/html/publications/directory/in
  dex.html
• Housing Assistance Counseling agencies
  throughout the country that provide advice on
  renting, buying a home, credit issues, etc.
  http//www.hud.gov/offices/hsg/sfh/hcc/hcs.cfm
• For local renting information http//www.hud.gov/
  renting/local.cfm
• Home energy costs (utilities) The Low-Income
  Home Energy Assistance Program. For a link to
  state/local programs go to http//liheap.ncat.org
  /profiles/energyhelp.htm
• Assistive Technology Alliance for Technology
  Access Centers in each state http//www.ataccess.o
  rg/community/centers.lasso

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• Food Stamps Helps low-income individuals
  families to buy the food they need for good
  health. Residents of FL, WA and WV can apply
  on-line. application and local office locations
  for each state http//www.fns.usda.gov/fsp/outrea
  ch/map.htm
• Emergency food assistance Food banks, pantries
  operate in many locations to provide emergency
  food assistance. Local sites - American Second
  Harvest http//www.secondharvest.org/get_help/
• Transportation Often a major hurdle to
  employment and independent living for persons
  living with disabilities in both urban and rural
  areas. State listing of transit agencies
  http//www.apta.com/links/state_local/ca.cfm
• (note this is the site for California, to find
  your state, substitute your states 2 letter
  initials-lower case- for the ca)

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• Community Mental Health Centers
• Each state has a network of community based
  mental health centers. A list of state centers
  http//mentalhealth.samhsa.gov/databases/
• Community Health Centers
• CHCs provide primary health care in which you
  pay what you can afford, based on your income. To
  locate a community health centers near you, go
  to http//ask.hrsa.gov/pc/

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• More INDEPENDENT LIVING resources
• Medicaid Waiver Programs such as the Home and
  Community Based Waiver
• http//www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/0
  8_WavMap.asp
• One-Stop Career Centers comprehensive
  employment and training services.
  http//www.doleta.gov/usworkforce/onestop/onestopm
  ap.cfm

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• Adaptive Recreation Programs offered by community
  Parks Recreation Departments
• Reproductive Health Services offered by health
  departments and planned parenthood agencies
• Financial management, budgeting and a number of
  home management courses are offered by the USDA
  County Extension Service

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• Volunteer opportunities are available in most
  communities. Two portals for locating local
  volunteer opportunities are
• http//volunteer.unitedway.org
• http//www.pointsoflight.org/centers/find_center.c
  fm
• Adult mentors can play a very important role in
  helping yschn to transition.
• Girls Boys Clubs, Big Brothers Big Sisters
  www.bbbs.org and other organizations help match
  youth with mentors.

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Take Home MessagesPOLICY PRACTICES

• It does, in fact, take a village to support youth
  and young adults as they transition to
  independent living
• Youth and young adults need help in building a
  community of support-- not only do they need to
  know what services/supports are available but
  also how to access them
• Once they know where resources are, and how to
  access them, they will be better prepared to face
  the uncertainties that life offers

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Take Home MessagesPOLICY PRACTICES

• And always remember that because of high turnover
  in many government and non-profit human services
  agencies, every encounter with another agency is
  an opportunity to educate them about your program
• --and the role that they can play in assuring
  a successful transition for the CYSCHN and
  families they serve

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Transition to Adulthood Allies and Health
Info Family Leadership Organizations Donene
Feist
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New World New Lingo
1. Moving Up from Powerless 2. Transferring
Skills Doc/RN?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
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Family

• 
  Aspirations
• Expectations
• Aspirations? Youth (Opportunity to Try)
• Expectations?Adults (Raising the bar)
• HEALTHY - How to stay well for longer periods

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Family Opportunity Act (FOA)

• February 2006 - Deficit Reduction Act (DRA)
• Expands access to Medicaid
• - low /middle class families (FOA)
• Program Phase-In over a 4 year period
• 0-06 year olds 2008
• 7-13 year olds 2009
• 14-18 year olds 2010
• Allows for community based waivers
• - home services for children in institutions
  (DRA)

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Family Opportunity Act (FOA)

• Approves immediate Medicaid coverage for
  newborns with disabilities (DRA)
• Establishes line item funding for creation of
  state-based Family-to-Family (F2F) Health
  Information Centers. (DRA)

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Family to Family Health Information
Centers children with disabilities and special
health care needs
F2F - Staffed by both parents of children with
special needs and professionals - provide
technical assistance and accurate information,
including identifying successful health delivery
models. - resource to healthcare insurers,
providers, and purchasers in developing ombudsman
models for collaboration
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www.familyvoices.org
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Health Info Services Supports
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5 Ways F2F can Help YOU

• Assistance in care coordination
• 2. Transition info, materials and resources
• 3. Understanding of systems services
• Liaison with state agencies
• 4. Joint dissemination and outreach
• 5. Workshop and educational opportunities

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Take Home MessagesPOLICY PRACTICES

• FV and F2F as allies
• Checking the pulse at the community level
  (tracking intake calls/emails)
• Access to families youth
• Informed consumers are terrific allies
• (freedom of speech-no job jeopardy)
• Keeping a face to the issues

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Transition to Adulthood Making the Paperwork
Work! Maintaining Health Insurance Patti
Hackett
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Transition Insurance
NO HEALTH INSURANCE 40 college graduates
(first year after grad) 1/2 of HS grads who
dont go to college 40 age 1929, uninsured
during the year 2x rate for adults ages
30-64 Source Commonwealth, 2003, 2005

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Health Insurance - Private
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Public Private Insurance

• Private Insurance - ERISA
• (Employee Retirement Income Security Act of 1974)
  
• self-funded health insurance plans
• exempt from state insurance commissions and state
  regulations.
• can place limits on benefits packages with little
  recourse for enrollees.
• Resource information
• Pension and Welfare Benefits Administration
• U.S. Department of Labor. www.dol.gov/dol/pwba
  Toll-free number 1-800-998-7542

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Public Private Insurance

• Private Insurance - ERISA
• (Employee Retirement Income Security Act of 1974)
  
• Families Tax Relief Act of 2004 (WFTRA)
• dependent -qualifying child /relative
• no gross income test applicable to Sections
  105 and 125 of the Code
• gross income test doesnt apply for
• qualifying relatives for medical care expenses
  
• gross income test tuned off by technical
  amendments of section 207 (9) of WFTRA.
• Source ERISA Industry Committee

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Take Home MessagesPOLICY PRACTICES

• Maintain family plan private health insurance
  coverage as long as possible.
• 1. Is youth covered under family plan?
• 2. Prior to age 19, advise plan of adult disabled
  dependent status.
• requires annual documentation.
• 3. Plan ahead to coordinate benefits during work
  trial period.

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HRTW Tips Tools
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• Know Your Health Wellness Baseline
• How does your body feel on a good day?
• What is your typical
• - body temperature
• - respiration count
• - elimination habits
• - quality of skin (front and back)

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• Handout Portable Medical Summary
• Carry in your wallet
• Good Days
• - Cheat Sheet Use as a reference tool
• Accurate medical history
• Correct contact s
• Document disability
• Health Crisis
• Expedite EMS transport ER/ED care
• Paper talks when you can not

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What to do By Age 10 Before Age 18
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To Do Before Age 10 Start early - Routine
Habits 1. Carry insurance card 2. Present
insurance card 3. Present Co-pay 4. Prepare for
Doc visit 5 Qs 5. Begin to know wellness
baseline 6. Teach decision making 7. Offer
choices during treatment
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TO DO - Before 18

• Create Portable Medical Summary
• Prepare for Doc visit 5 Qs
• Know wellness baseline, Diagnosis, Meds
• Practice calling for Rx
• Make own Doctor appts
• Decision making / Learning choice
• Assess Insurance, SSI, VR

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• Bottom line with or without us- youth and
  families get older and will move onThink what
  can make it easier do whats in your control and
  support youth to tackle whats their control.

• Start early
• Ask and reinforce life span skills prepare for
  the marathon (post your practice transition
  policies, help families to understand their
  changing role)
• Assist youth to learn how to extend wellness
• Reality check Have all of us done the prep work
  for the send off before the hand off?

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Lets Talk . QUESTIONS?
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Elizabeth McGuire HRSA/MCHB Healthy Policy
Analyst HRTW Project Officer emcguire_at_hrsa.gov
Patti Hackett, MEd Co-Director, HRTW
Center Bangor, ME pattihackett_at_hrtw.org
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Patience H. White, MD, MA, FAAP Medical
Advisor- HRTW Center Chief Pubic Health
Officer Arthritis Foundation Washington,
DC pwhite_at_arthritis.org Theresa Glore,
MS Title V Consultant, HRTW Center Louisville,
KY theresaglore_at_hrtw.org
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Donene Feist Executive Director, Family
Voices-North Dakota Director, Family to Family
Health Information and Education Center Edgeley,
ND fvnd_at_drtel.net Tom Gloss Federal Policy
Consultant- HRTW Center Finksburg,
MD tomgloss_at_hrtw.org
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www.hrtw.org
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www.hdwg.org/catalyst/index.php
State-at-a-Glance Chartbook on Coverage and
Financing of Care for Children and Youth with
Special Needs
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Medicalhomeinfo.org
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www11.georgetown.edu/research/gucchd/nccc
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www.familyvoices.org