Transcript Autism Speaks Autism Treatment Network

Access to Care for
Children with Autism:
Engaging Primary Care Physicians
through the Autism Speaks
Autism Treatment Network
The AS ATN’s 4 Strategic Goals
VISION: Improved health and quality
of life for individuals with ASD
MISSION: Sustainable system for care delivery and evidence development
1) Quality
2) Access
3) Research
Improve the quality
of medical care for
children and
adolescents with
ASD
Increase the
availability of a
comprehensive,
coordinated,
longitudinal care
model for all children
Advance the
evidence-base and
research on medical
issues in order to
provide better care
for children with ASD
4) Leadership
Become the leading
clinical network on
medical issues
related to ASD
PCP Engagement 101
Kristin Sohl, MD, FAAP
Medical Director
AS ATN Site Principal Investigator
University of Missouri – Thompson Center
Building the System for PCP
Engagement/Co-management
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Identification
Communication
Consistency
Access
Network
Training
Partnership
Identification
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Timely
Accurate
Reliable
“Automatic”
Communication
• PCPs want communication about their
patients
• How do they want the information?
– Long vs short
– Fax vs mail vs call vs email
– Every time vs only if a problem
• Ask – PDSA
Consistency
• Communication occurs regularly with key
elements
– Family friendly/health literate
– Specific recommendations or considerations
– universal – family, specialist, PCP
Access
• PCPs need access to timely specialty
consultation
– Phone call
– Telemedicine
– Email
What is your site doing to build access for PCPs
to care for their patients in their own office?
Families in Missouri need ACCESS to
expert care
Telehealth at the Thompson
Center
 Telepsychiatry
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Telegenetics
Medical Autism
Dietician
Social Services
Neuropsychology Feed
back sessions
 Developmental and ADHD
follow-up
 Serve nearly 300 patients
per year
Network
• Build trust based on consistency and access
• Seek support
• Formally engage
– Lay out expectations
and needs
Training
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Workshops –
In-office training
Regional trainings
Staff trainings
Guidelines and Toolkits
Resource information
– Yellow Pages/Guide to
Services
• Catching Zs Picture
Partnership
Thompson Center Provider Advisory Council
(TC-PAC)
Partnership
Show-Me Extension for Community Healthcare
Outcomes (ECHO)
Inventing Solutions
Thompson Center
Autism Collaborative
Team
• Parents
• Medicine: Autism
Specialists
• Medicine: Primary
Care Physicians
• Psychology
• Nursing
• Social Work
• Education
Making It Work - Better
Karen Ratliff-Schaub, MD,MBOE
Director
AS ATN Site Lead Autism Specialist
Nationwide Children’s Hospital
AS ATN Quality Improvement
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Access
Building capacity
Family participation at multiple levels
N of 1
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Constipation/Sleep
Specific protocols
Multidisciplinary approach
Communication with PCP
Transfer of care to PCP
Access To Care
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Mapping the process
Calculating demand
Determining capacity
Managing schedules
Transition back to
PCP
PCP Transition
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Met with practices, ED
Provided resources
Information exchange
Autism training to ALL staff
Follow up
PCP Training Specifics
Autism 101
• Features
• Medical setting difficulties
• Parent concerns
• Family needs
Approach to Care
• Explain care
• Don’t rush in
• Involve parent
• Be flexible
• Patient/family centered
care
Patient/Family Centered Care
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Person first language
Include individual in discussions
Seek family input
Build trust with child/family
Effective communication (verbal, visual)
Plans for waiting
Keys To Success
• Timing
• Resources (print,
websites, USB)
• Personnel contact
exchange
• Build partnershipscommunication
(telephone, email, etc)
Challenges
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Time!!!!
Ongoing training needs
Scheduling
Keeping it real/practical
Building Successful Care Teams
Amy Hess, BA, MAcert
AS ATN Site Coordinator
Nationwide Children’s Hospital
Question?
• What is your commitment to Patient and
Family Centered Care?
– Hospital
– ATN Site
– ATN Network
Patient and Family Centered Care
• Family Advisory Council at NCH – est. 1998
– Main Hospital
FAF, Parent Mentoring, QI, Coffee Talks, Lunch and Learns
– Committees
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Hospital Experience
Education
Executive
Communication
Patient and Family Centered Care
• Autism Family Advisory Council (Unit Council)
– 12 member
– Outreach and Training (FAMLS series, My Heath series, Ohio
Partnership series)
– Family as Faculty
– Care and Treatment input – PCP and ED Outreach
– Link with community agencies/providers
• Ohio Department of Health, OCALI, Goodwill
• Autism Society of Central Ohio
• National FAC Chair
Know Clinic Volume
• Clinic Volume at Nationwide Children’s Hospital
– More than 6,500 patients seen annually.
– More than 3,500 direct, in-office screenings for ASD by a
doctoral level clinician each year.
– More than 1,200 children followed annually for medical in
Ongoing Care.
• Partnerships are needed!
Coordinated Care Barriers
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Failure to Plan- med and family
No referral - “the letter in the mail”
Limited access to PCPs knowledgeable in ASD
Fear of transition
Effective Coordinated Care
Professionals
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Provide opportunity for learning about ASD
Partner with families
Collaborate in care
Build easy access to key personnel
Provide next steps in care – PLAN
Whole care for the whole child
Effective Coordinated Care
Families
• Compile Health Care data for PCP
– Ohio GPS
• Shop around
• Partner with PCP office
– Become the autism “go to resource”
• Connect care team members
• Plan for next steps in care
It CAN work
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Practice Family Centered Care
Train
Coordinate
Communicate
Design Care Teams
Build support
Plan for the future
Family Professional Partnership
Framework
Alicia Curran, BS, MAcert
AS ATN Site Coordinator
LEND Family Faculty
University of Missouri – Thompson Center
Partnerships
Personal Qualities Necessary for
Effective Partnerships
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Mutual respect
Honesty
Trust
Openness
Listening skills
Sensitivity
Effective Communication skills
Empathy
http://soldierexecutionerprolifer2008.blogspot.com
What do families have to offer?
• Extensive knowledge about their child’s
capabilities, as well as their limitations
• Interpretation of the child’s actions, behaviors,
& language
• They are motivated learners
• Invested in the child
• Invested in the outcomes
• Catalyst for change
What do families have to offer?
• They have a intuitive understanding of autism
• Gradually, they will become “experts” in
autism
• Able to gain skills that extend what
professionals offer
• They will assume the role of primary teacher
and therapist
• Advocacy
• They are intelligent consumers of services
Priorities for Partnerships
• Families with a higher “perceived level of
burden” from the special needs of their child
• Racial/ethnic “minorities”
• Lower socioeconomic status
• Fewer social supports
Possible Barriers
• Professionals not willing to move from a
discipline-specific to an interdisciplinary
model
• Lack of preparation for parents to fulfill
expectations
• Attitude of collaboration from BOTH parents
and professionals
• Unable to find “common ground”
Ensuring team success!
Professional
Family
 Build a  Listen before you
form an opinion
relationship
 Speak the same
language
 Make sure
treatments are
not too
complicated
 Respect the
family’s
knowledge
 Look beyond the
child’s disability
 Develop common
goals
 Effective
communication
 Emphasize family
strengths
TRUST!
 Ask for
clarification if you
don’t understand
 Respect the
provider’s
knowledge
 Support the
provider’s
action plan
Questions
www.asatn.org