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

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!

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