Transcript Transition to adult health care

What’s Health Got To Do With It?
Vickie Mitchell, Ed.D
Associate Professor
College of Education
Sam Houston State University
Ivy Goldstein, BSBA
Texas Department of State Health Services
Title V Maternal & Child Health
CSHCN Systems Development Group
Presentation Overview
 Introduction & Background
 What’s Health Care Transition?
 Health Care Transition Planning Tools
 Incorporating Health Care Transition Goals into IEP’s
 Resources
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Children with Special Health Care Needs (CSHCN)
 Texas Department of State Health Services
 Title V Maternal & Child Health
CSHCN Systems Development Group
 Mission
To support family-centered, community-based strategies for
improving the quality of life for children with special health care
needs and their families
http://www.dshs.texas.gov/cshcn/
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CSHCN Definition
“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”
Health Resource Services Administration (HRSA) Maternal and Child Health Bureau
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CSHCN Services Program Title V Performance
Measures
 Children and families have the services and
supports they need to be fully integrated
into their communities
 Children have a “medical home” that
knows them well and helps them find and
get all the care they need
 Youth have the services and supports they
need to transition to adult health care
http://www.dshs.texas.gov/cshcn/
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“The first wealth is health”
- Ralph Waldo Emerson
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Definition of Transition
“dynamic, lifelong process that seeks to meet [youths’]
individual needs as they move from childhood to
adulthood. The goal is to maximize lifelong functioning
and potential through the provision of high-quality,
developmentally appropriate health care services that
continue uninterrupted as the individual moves from
adolescence to adulthood. It is patient centered, and its
cornerstones are flexibility, responsiveness, continuity,
comprehensiveness, and coordination’’
AAP, AAFP, ACP – Pediatrics 2002
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Transition to adult health care- WHY?
 Legal changes at age 18
 Patient confidentiality & HIPAA
 Supported Decision-Making & Alternatives to Guardianship
 Aging out of pediatric practices
 Admitting privileges at pediatric and adult hospitals
 Culture difference at adult practices (e.g., expectations for greater individual responsibility;
environment of waiting and exam rooms; and, less time for appointments)
 Providers lack training in childhood-onset conditions
 Medicaid State Plan benefits change beginning at age 21
“Having a different provider just makes sense -- I would not expect my kids to have the
same math teacher in 11th grade as they did in 2nd grade.”
- parent
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Transition ARD Meetings
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Emphasis on the Individual
“Individual steps along the transition process will vary
from one youth to the next depending on the individual
patient, family, caregiver, health care professional, and
community resource factors.”
“A well-timed transition from child to adult-oriented care is
specific to each person…”
“Optimal health care is achieved when each person, at
every age, receives medically and developmentally
appropriate care.”
AAP, AAFP, ACP – Pediatrics 2011
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Health Care Transition Tools & Resources
http://www.gottransition.org/youthfamilies/index.cfm
http://www.gottransition.org/providers/index.cfm
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Got Transition
Featured in SSA’s new booklet for young adults
https://www.ssa.gov/pubs/EN-05-11005.pdf
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http://www.gottransition.org/resources/index.cfm#selfcare
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Got Transition
Considerations for
Children with Medical Complexity (CMC)
“…a subgroup of children with chronic health
problems (who) make up a small but especially
vulnerable population…. These children are
characterized by their dependence on multiple
pediatric subspecialists and often on medical
technology; they are medically fragile and are
particularly dependent on care coordination to
maintain stable health.”
http://www.lpfch.org/publication/missing-piece-medical-homescalifornia%E2%80%99s-children-medical-complexity
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Taking Responsibility for Medical Care
https://www.youtube.com/watch?v=cjXurYrFMZM
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2009 OSEP Letter to Dr. Heath
• “While including employment goals in the IEPs of some students with severe medical
conditions and developmental needs may be upsetting to their parents, the IDEA does
not provide an exception for this requirement based on the nature of the child's
disability; and OSEP does not have the authority to waive this statutory requirement.
Therefore, the determination of what postsecondary goals to include on a child's IEP
must be individualized and may not be based on whether the child has a severe
medical condition and developmental needs.” (p.2)
• http://www2.ed.gov/policy/speced/guid/idea/letters/2009-3/heath082109iep3q2009.pdf
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Postsecondary Goals
• Postsecondary Education/Training
– Following completion of public school, Sophie will attend the Arc of the Arts, City of
Austin’s cultural arts program, Jewish Community Center of Austin, and UT’s speech
program to participate in art classes, work activity training, and speech services,
respectively.
• Postsecondary Employment
– Following completion of public school, Sophie will work at the Jewish Community
Center of Austin doing clerical work and providing assistance in the gym.
• Postsecondary Independent Living
– Following completion of public school, Sophie will use a treadmill or track to exercise
and will select healthy food choices.
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IEP Annual Goals can include health & wellness
Goals can be written in order to:
 Help student become more knowledgeable about their
own health, medical needs and disability
 Help student begin thinking about who will provide
health care once they are an adult
 Help student take control of making decisions and
choices about their own health
 Help student to build assertiveness, confidence, and
self-advocacy skills
Missouri Family to Family & UKMC IHD, UCEDD; Repetto et al., 2012
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Example IEP Annual Goal:
Managing Health Conditions
GOAL: Student will correctly identify foods that raise
blood sugar by selecting from photos of food for 80% of
trials over the semester.
GOAL: Student will demonstrate understanding of
his/her seizure disorder by receptively identifying
triggers, signs a seizure is about to happen, and what to
do to be safe in the community for 80% of trials over a
nine week grading period.
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Example IEP Annual Goal:
Physical Fitness
GOAL: While at the gym or outside, student will use the
treadmill/track (or other comparable exercise equipment
at the gym) to exercise independently for at least 30
minutes for three consecutive trials.
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Sophie surpassing
her IEP goal and
walking 45 minutes
consistently!
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Example IEP Annual Goal:
Physical Fitness
GOAL: Student will demonstrate independence in
making contact with a doctor’s office through role play by
identifying the correct phone number, introducing
themselves, and explaining their need in 60% of practice
phone calls over a nine week grading period.
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Additional Ideas:
Record-keeping
 How can youth learn to keep track of personal health
information and prepare for medical appointments?
 List of questions, current medications, Portable Medical
Summary, insurance card(s), emergency care plan, list of
providers
 Build a Care Notebook and/or Health Vault©
National Center for Medical Home Implementation/Building Your Care Notebook:
https://medicalhomeinfo.aap.org/tools-resources/Pages/For-Families.aspx
Texas Parent to Parent/Care Notebook:
http://www.txp2p.org/resources/CareNotebook.html
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Example IEP Annual Goal:
Navigating the Health System
GOAL: Student will demonstrate greater independence
with managing her health care independently by carrying
a wallet with her insurance card and by handing
insurance card to a receptionist in 80% of trials over a
semester.
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Navigating the Health System
Sophie hands
the receptionist
her insurance
card before her
appointment
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Example IEP Annual Goal:
Related to: Higher Education & Employment
GOAL: Student will demonstrate understanding of the
side effects of his medication by expressively identifying
all of the possible side effects of the medication (8 total
side effects are listed on the label) for 80% of trials over a
nine week grading period.
GOAL: Student will meet with appropriate school staff to
identify accommodations they will need in a higher
education setting and compile a list over a nine week
grading period.
GOAL: Student will identify the correct contact for the
Center /Office of Disability Services for 3 colleges over a
nine week grading period.
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Additional Ideas:
Higher Education & Employment
 Find ways to prepare youth for a new experience and
environment (e.g. One Page Profile; Social Stories ©)
 Continue to encourage developing self-management
skills
 Update Portable Medical Summary and emergency care
plan
• http://www.learningcommunity.us/home.html
• http://www.person-centered-practices.org/
• http://carolgraysocialstories.com/
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Additional Ideas: One Page Profile
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Health Care Transition Resources
• Got Transition
– Self Care Resources http://www.gottransition.org/resources/index.cfm#selfcare
– Communicating with Doctors http://www.gottransition.org/resourceGet.cfm?id=56
• Good 2 Go Transition Tips for Parents and Caregivers
http://www.sickkids.ca/Good2Go/For-Youth-and-Families/Just-for-Parents-andCaregivers/Tips-for-Parents-and-Caregivers/Index.html
• On Trac Family Toolkit http://www.bcchildrens.ca/our-services/supportservices/transition-to-adult-care/family-toolkit
• Autism Speaks Transition Toolkit https://www.autismspeaks.org/familyservices/tool-kits/transition-tool-kit
• Health Insurance
– Extending Health Insurance for an Adult Child http://tcdd.texas.gov/extending-insuranceadults/
• Legal
– Alternatives to Guardianship http://www.tcdd.texas.gov/resources/guardianshipalternatives/
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Health Care Transition Resources
• CSHCN Services ProgramWebsite http://www.dshs.state.tx.us/cshcn/
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Transition Toolkit
GovDelivery Email News and Announcements
Texas Title V Transition Workgroup
Transition Resource Guide for Providers
Brochures for Families and Providers
• Navigate Life Texas www.navigatelifetexas.org
• Texas Parent to Parent Pathways to Adulthood
http://www.txp2p.org/parents/pathway.html
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www.navigatelifetexas.org
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Texas Parent to Parent Medical Home Resources
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Health Care Transition Resources
• Education Transition
– Transition Requirements in IDEA http://www.parentcenterhub.org/repository/transition-goals/
– Texas Project First http://www.texasprojectfirst.org/LinksTransition.html
– Texas Education Agency’s Secondary Transition
http://tea.texas.gov/index2.aspx?id=2147496883
– Partners Resource Network http://www.partnerstx.org/transition
• Texas Health Steps Continuing Education Modules
http://www.txhealthsteps.com/cms/?q=courses-by-topic
– Transition Services for CYSHCN
– Building a Comprehensive and Effective Medical Home
– Culturally Effective Health Care
– Advancing Health Equity In Texas through Culturally Responsive Care
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SAVE THE DATE!
Baylor College of Medicine’s
18th Annual
Health Care Transition
Conference
Fall, 2017
Houston, Texas
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https://www.youtube.com/watch?v=5BZlyxS37Kk
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Why is it Essential to Include Health Care in
Transition Planning?
Health is the foundation of all other
areas of transition are built upon
higher education, employment,
independent living, social/recreational
Repetto et al., 2013
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With thanks to….
The Institute for Person Centered Practices,
http://www.person-centered-practices.org/
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We welcome your feedback!
Please let us know how the tools are working for families.
You are always welcome to contact us for technical assistance.
Ivy Goldstein, BSBA
Program Specialist
Title V Maternal & Child Health Program
Texas Department of State Health Services
[email protected]
Vickie Mitchell, Ed.D.
Contact
Information
Associate Professor
Eleanor and Charles Garrett Endowed Chair in Special Education
Sam Houston State University
[email protected]
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