ADEP. Autism Diagnosis Education Project. A Year in Review. July 1, 2016 June 30, 2017

Transcription

1 ` ADEP Autism Diagnosis Education Project A Year in Review July 1, 2016 June 30,

2 Introduction The Autism Diagnosis Education Project (ADEP) was founded upon the idea that Ohio families need access to a local, timely, standardized, comprehensive evaluation when they suspect their child of having an autism spectrum disorder (ASD). As a result of this need, ADEP launched a pilot project in 2008 with five communitybased diagnostic partnerships. After the success of the pilot project, the initiative expanded between 2010 and 2015 to include 48 counties. These community-based diagnostic partnerships formed unique teams between local medical providers and professionals serving young children with delays/disabilities, primarily through the Ohio Early Intervention (EI) system. The underlying goals were, and still are, to decrease wait times for families, decrease the average age of diagnosis, and equip and support local pediatric providers, in partnership with the local EI team, in their understanding of ASD and their abilities to accurately diagnose, particularly in the birth-to-three population. Under the current leadership of the Ohio Department of Developmental Disabilities (DODD), Ohio Center for Autism and Low Incidence (OCALI), Akron Children s Hospital (ACH), and the Family Child Learning Center (FCLC), ADEP continues to make the early diagnosis of ASD a priority for young children in Ohio. This summary report reflects on the accomplishments and goals of the project between July 1, 2016 and June 30, 2017, including target goals and analysis of the current status of the project. Using collected data, and feedback from participating teams, recommendations are provided on how to move forward. ADEP 101: The Basics on How the Process Works How exactly does ADEP work? Who is involved? How does the team make a diagnosis? ADEP links local early intervention service providers and physicians to ensure a comprehensive multidisciplinary evaluation of a child. For children entering Ohio Early Intervention, the process follows the normal procedures and timelines for intake, evaluation, and development of the individual family service plan (IFSP). However, once either the family or the early intervention provider has concerns about autism, a conversation then occurs with the family about whether they would like to pursue an enhanced, comprehensive evaluation for their child. ADEP by the Numbers Medical Partners Early Intervention Providers Participating Counties Since 2008 Number of children evaluated since January 1, 2013 Average age of diagnosis in months1 1 Reflecting the median age of children diagnosed at 38 months or earlier. 2

3 A comprehensive evaluation should include the following: Health, developmental, and behavioral histories Physical examination Developmental, psychoeducational evaluation Determination of a diagnosis (including the use of standardized tools) needed for early intervention services Assessment of the family s knowledge of ASD, challenges, coping skills, and resources/supports Lab work, if necessary The entire process happens locally; families do not have to drive hours to regional pediatric centers and developmental clinics to get the answers they need. Instead, they interact with service providers and doctors in their home communities, in places where they feel at ease and with faces that are familiar to them. While one of ADEP s primary goals is to decrease wait times and lower the age of diagnosis, it also aims to focus on family and community support and education. Participating early intervention providers consistently report one of the most crucial aspects of this process is the ability to walk side-byside with a family through this journey, from start to finish, helping them navigate a system that may oftentimes be intimidating and overwhelming. Figure 1 outlines how a child may receive a diagnosis through this process. Figure 1 - The ASD Diagnosis Process Family suspects child has ASD Family contacts Help Me Grow Local EI team completes a psychoeducational evaluation Child begins intervention, if needed Team refers child to local medical partner Medical partner completes a medical evaluation Medical partner diagnoses or rules out ASD Child receives necessary targeted early intervention support through local EI Providers 3

4 State Map Since its launch in 2008, fifty-three counties have been trained and participated in ADEP. As with any initiative, there is an ebb and flow to the level of participation in the project. A small number of counties have not been able to sustain their involvement in the initiative over the long-run, but a majority have been able to continue their efforts with great success. The growth of ADEP has occurred primarily in 4 separate waves: two waves under the Autism Diagnosis Education Pilot Project (ADEPP, ), and two waves under the expansion (ADEP, ). Current and past participant counties are shaded below. 4

5 Summary and Highlights of Data and Deliverables The following pages outline a series of key elements of ADEP, including: Target goals Data collected from teams, and results of findings Evidence of training and technical assistance provided Barriers to growth Recommendations for moving forward These elements highlight not only the project s success, but also challenges encountered, how those challenges were addressed, and suggestions for the future. Data Collection Teams were asked to submit data on an ongoing basis in order to track whether target goals were being met. All data (with the child s identity removed) was submitted via a brief online survey, which asked for the following information on each child seen by the diagnostic team: County Child s ID, (as assigned by the county) Child s date of birth Child s gender ADOS-2 module used to evaluate child Primary diagnosis given by partner physician Child s age at which family was first concerned Child s age at first contact with HMG or local education agency (LEA) Child s age at ADEP diagnosis If child received an ASD diagnosis, what intervention did he/she receive? The data from this survey indicated a series of key results, reflecting information gathered between January 1, 2013 through May 19, As information was collected, project leadership routinely provided a data summary back to the teams through monthly webinars as a means of indicating ADEP s progress in achieving targets. Project leadership then worked in conjunction with a biostatistician to evaluate and analyze the data submitted, including the percentage of children diagnosed, average ages, lag time, and age of diagnosis. 5

6 Target Goals Three target goals have been outlined for ADEP, making these the focal points of the initiative: 1. Decrease the lag time from initial family concern to diagnosis to less than 9 months. 2. Decrease the lag time from initial contact with HMG or LEA to diagnosis to within 90 days. 3. Reduce the age at which a child is diagnosed to 30 months. As teams maintain reliability and efficiency, ADEP moves closer and closer to its target goals, as evidenced by the graphics shown on the following pages. Although ADEP targets children birth to three, teams may occasionally see children older than 3 years of age, which results in some of the data being skewed. Thus, the following charts reflect the intended population and then the overall population. Table 2 - Diagnosis at 38 months or earlier* ADEP Target Findings from 1/1/2013 through 5/19/17 Time from initial family concern to diagnosis < 9 months 10.0 mos Time from initial contact with HMG or LEA to diagnosis < 3 months (< 90 days) 6.0 mos Age at diagnosis 30 months 30.0 mos Time from initial concern to contact with HMG/LEA 2.0 mos Table 3 - All Children* ADEP Target Findings from 1/1/2013 through 5/19/17 Time from initial family concern to diagnosis < 9 months 11.0 mos Time from initial contact with HMG or LEA to diagnosis < 3 months (< 90 days) 7.0 mos Age at diagnosis 30 months 31.0 mos Time from initial concern to contact with HMG/LEA 2.0 mos *data reflects median rather than average 6

7 Table 4 - All Children Diagnosis Percentage Diagnosed Number of Children Autism Spectrum Disorder 56.0% 493 Language Delay / Disorder 14.2% 125 Developmental Delay 8.9% 78 Family did not follow through / team did not refer on 5.3% 47 More testing recommended 5.0% 44 No diagnosis given 2.4% 21 Behavior Disorder 2.2% 19 Other 1.4% 12 Unknown 1.0% 9 Genetic Disorder (e.g., Fragile X) 1.0% 9 Intellectual Disability 0.7% 6 Anxiety 0.6% 5 Reactive Attachment Disorder 0.6% 5 ADD/ADHD 0.3% 3 Depression 0.2% 2 Waiting to see medical partner 0.2% 2 7

8 Training and Technical Assistance ADEP teams confirm that ongoing training and technical support is vital to the sustainability of the local process, particularly monthly webinars and regular Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) training. Both the webinars and the ADOS-2 trainings serve several integral purposes: Providing current research and information to the field that is highly targeted to their needs, preventing them from having to filter through mounds of research on their own time. Connecting everyone across the state in order to disseminate consistent and cohesive information to all who participate. Providing a means to train any new staff members who have joined the partnership between trainings, as well as making sure existing team members maintain current skills. Over the course of the last 12 months, 14 webinars were conducted, which focused on overall project updates, current research and medical partner resources. Two centralized two-day ADOS-2 trainings were provided in August 2016 and March 2017, focusing on new team members. Five separate regional fidelity refreshers were conducted in November and December 2016, which focused on quality improvement for all team members. During monthly webinars, project announcements, trending topics, and data updates are highlighted, as well as recent research and news in the field of ASD, including: Research on social engagement with parents in 11-month-old siblings at high and low genetic risk for autism spectrum disorder Review of DSM-5 criteria and discussion on determining appropriate severity levels Panel discussion on how to bring up the topic of autism with families Overview of Ohio s Interagency Work Group on Autism Presentation on how autism presents differently in females Outline of what families should expect when attending a diagnostic appointment Overview of the M-CHAT, R/F Overview of differential diagnosis of autism in young children Refresher on the ADOS-2 8

9 Five separate regional fidelity workshops were held with the intent to revisit core concepts and bring into alignment participants who may have drifted from the model as it was intended. Several key points were emphasized to teams: The importance of bringing up the topic of autism with all families at the point of intake rather than waiting for families to bring up the possibility at a later date. By making it a standard question at the point of intake, the topic becomes a routine and part of the process rather than an exception. The value of the psychoeducational team members attending the diagnostic appointment with the family, rather than having the family attend alone. This helps close the communication gaps between all parties involved. The necessity of improving communication and the relationship between the psychoeducational team members and the medical partner. Each attending team was asked to complete a quality improvement grid, indicating what their present challenges were, how they defined success related to that goal, and what their strategies were for achieving that goal. In preparation for the fidelity workshops, project leadership drafted a summary document for teams to use, which is a side-by-side comparison of how core components of the model should and should not look. To view this document, click here Project leadership also visited various teams and partner physicians in-person, as well as conducted conference calls in order to provide technical assistance and guidance on local issues. By making project leadership accessible and available on a regular basis, teams could call with questions and challenges they were facing, and receive timely responses and guidance. For a complete listing of trainings provided, please see the Appendix. Barriers to Growth As ADEP has progressed, there are consistent barriers that continue to arise, both at the local level and across the larger system as a whole. The most common barriers expressed are as follows: Recruitment, maintenance, and engagement of partner physicians. Staff turnover of early intervention service providers. Local politics, meaning the complexity and dynamics of relationships among local agencies and providers can sometimes prove to be a hindrance to the success of a team. Loss of fidelity, teams sometimes drifting from the core model and gold standard set forth. Not seeing enough children on a regular basis for providers to maintain reliability and skills on ADOS. Each of these barriers presents their own set of challenges and difficulties. Some can be and are addressed by ADEP project leadership and participating state agencies. Other barriers are being addressed at the local level by individual team members and team leaders. It is through collaborative efforts and ongoing, open conversations on behalf of both project leadership and participating teams that barriers are addressed in order to ensure the continued success of ADEP. 9

10 Recommendations for Moving Forward In light of these barriers and conversations with existing medical partners, early intervention team members and project leadership, the following recommendations are suggested for the fiscal year in order to continue to provide sufficient support to participating teams and their medical partners: Provide additional ADOS-2 training for those teams who have had staff turnover. Provide ongoing ADOS-2 support for all in order to maintain reliability, focusing on more intensive support to teams via face-to-face regional meetings. Conduct a one-day refresher course for all participating team members, focusing on fidelity and quality improvement. Provide quarterly webinars for all partner physicians. Assist counties who are currently without a medical partner by helping them formulate a strategy for recruitment and retention. Develop and implement plans for counties who are currently unable to participate, equipping them with alternative approaches to early diagnosis. 10

11 Appendix Timeline of training and support provided from July 1, 2016 June 30, August Webinar: Research article, Social engagement with parents in 11-month-old siblings at high and low genetic risk for autism spectrum disorder. ADOS-2 training for new team members September Webinar: DSM-5 review and discussion on determining the appropriate severity levels Webinar: Panel discussion on how to bring up the topic of autism with families October Webinar: Overview of Ohio s Interagency Work Group on Autism November Webinar: Presentation on how autism manifests differently in females Four regional fidelity workshops, emphasizing quality improvement December Webinar: Overview of ADOS-2, how to interpret results and cautions 1 regional fidelity workshop, emphasizing quality improvement January Webinar: Review of lessons learned at regional workshops and common themes February Webinar: Review of what families should expect at the diagnostic appointment March Webinar: Discussion on the bigger picture of the ADOS-2, review of modules, cautions on interpretations Webinar: definition of early intervention, recommended practices for toddlers with ASD ADOS-2 training for new team members April Webinar: Overview of the M-CHAT, R/F and appropriate use May Webinar: Overview of differential diagnosis of autism in toddlers June Webinar: Summary review of the year and data-todate Webinar: overview of differential diagnosis of autism in young children 11

12 Additional Resources ADEP website YouTube Video: Spotlight on Early Diagnosis and Early Intervention in Ohio I Suspect My Child Has Autism: A Four-Step Guide for Ohio Parents on What to Do Next Ohio s Parent Guide to Autism Spectrum Disorder ASD Ohio Early Intervention Project Leadership Dr. Jessica Foster, MD, MPH, FAAP Medical Director Akron Children s Hospital Marilyn Espe-Sherwindt, Ph.D. Early Childhood Consultant Family Child Learning Center mespeshe@kent.edu Courtney Yantes, MBA Project Coordinator Ohio Center for Autism and Low Incidence courtney_yantes@ocali.org, Abbie McCauley, Ph.D. ADOS-2 Facilitator Family Child Learning Center Funding for ADEP provided by the Ohio Department of Developmental Disabilities dodd.ohio.gov For more information or questions regarding ADEP, please contact Courtney Yantes. 12