access to care for children with autism: engaging primary care physicians through the autism speaks...
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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) QualityImprove the quality of medical care for
children and adolescents with
ASD
2) AccessIncrease the
availability of a comprehensive,
coordinated, longitudinal care
model for all children
3) ResearchAdvance 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, FAAPMedical Director
AS ATN Site Principal InvestigatorUniversity of Missouri – Thompson Center
Building the System for PCP Engagement/Co-management
• Identification• Communication• Consistency• Access• Network• Training• Partnership
Identification• 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
Telepsychiatry Telegenetics Medical Autism Dietician Social Services Neuropsychology Feed back
sessions Developmental and ADHD
follow-up Serve nearly 300 patients per
year
Telehealth at the Thompson Center
Network
• Build trust based on consistency and access• Seek support• Formally engage
– Lay out expectationsand needs
Training
• 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 SolutionsThompson 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,MBOEDirector
AS ATN Site Lead Autism SpecialistNationwide Children’s Hospital
AS ATN Quality Improvement
• N of 15• Access• Building capacity• Family participation at multiple levels
N of 1
• Constipation/Sleep• Specific protocols• Multidisciplinary approach• Communication with PCP• Transfer of care to PCP
Access To Care
• Mapping the process• Calculating demand• Determining capacity• Managing schedules• Transition back to
PCP
PCP Transition
• 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
• 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 partnerships-
communication (telephone, email, etc)
Challenges
• Time!!!!• Ongoing training needs• Scheduling• Keeping it real/practical
Building Successful Care Teams
Amy Hess, BA, MAcertAS 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 HospitalFAF, Parent Mentoring, QI, Coffee Talks, Lunch and Learns
– Committees• 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
• 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
• 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 CareFamilies
• 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
• Practice Family Centered Care• Train• Coordinate• Communicate• Design Care Teams• Build support• Plan for the future
Family Professional PartnershipFramework
Alicia Curran, BS, MAcertAS ATN Site Coordinator
LEND Family FacultyUniversity of Missouri – Thompson Center
Partnerships
Personal Qualities Necessary for Effective Partnerships
• Mutual respect • Honesty • Trust • Openness • Listening skills • Sensitivity • Effective Communication skills • Empathy
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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!
Build a relationship
Professional Family
Look beyond the child’s disability
Speak the same language
Listen before you form an
opinion Make sure treatments are
not too complicated
Ask for clarification if you don’t understand
Develop common goals
Respect the family’s
knowledge
Respect the provider’s knowledge Effective
communication
Emphasize family strengths
TRUST! Support the
provider’s action plan
Questions
www.asatn.org
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