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 Improve the quality of medical care for children and adolescents with ASD 2) Access Increase the availability of a comprehensive, coordinated, longitudinal care model for all children 3) Research 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 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 – 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 – 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 expectations and 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 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 N of 1  5 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, , etc)

Challenges 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 – Main Hospital FAF, 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 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 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 Mutual respect Honesty Trust Openness Listening skills Sensitivity Effective Communication skills Empathy

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