Autism Lifeline Links

Bexar County is home to 1.8m people, over 1,200 sq/mi and 19 ISD’s resulting in service challenges for people with ASD. A 2016 study identified 23,000 people with ASD in Bexar, Region 20 has 4,546 children classified ASD. So, where are they? Are they connected with services? What is their quality of life? What is the plan for lifetime care? October 2016 Autism Lifeline Links (ALL) was established as backbone for a collective impact project to identify people with ASD, service gaps, barriers to access, and establish cooperative practices to streamline service delivery, increase community awareness and impact public policy.

Collective Impact

https://www. norcalunitedway https://www.norcalunitedway.org/collective-impact “Collective Impact Changes Communities, Changes Lives” UWNorthern California

http://www. thehomelessplan http://www.thehomelessplan.org/collectiveimpact/ Palm Beach County Homeless Advisor Board TheHoelessPlan.org

Are you involved in a collective impact initiative? What are you involved in that looks like collective impact? For ASD, what entities do you think are key to success?

An example…

Autism in the nation…by the numbers The Centers for Disease Control and Prevention (CDC) estimates autism’s prevalence as 1 in 59 children in the United States. 1 in 42 boys 1 in 189 girls There is a 237% projected annual increase in the number of children needing service.

Autism in San Antonio. …. by the numbers Autism in San Antonio*….by the numbers *Bexar, Bandera, Comal, Kendall, Atascosa, Guadalupe, Medina and Wilson Counties 2016 Capital Healthcare Planning CBSA 30,000 people with ASD 1:79 in CBSA *4,546 students identified by Region 20 receive autism services in ISD’s Bexar County 23,000 people with ASD in 1:81 in Bexar County Where are the people with autism living? Who is serving them? Are they connected with support and services? Are they ready for school? Is school ready for them?

The Problem…. medical expenditures 4.1–6.2 times greater than for those without ASD. average annual Medicaid-enrolled $10,709 pc- 6x higher than neuro- typical intensive behavioral (ABA) $40,000 to $60,000 pc/py avg special education ASD supplement $10,000/pc/py avg wait time for diagnosis 9-12 mo Medicaid does not cover ABA adults w ASD/IDD under represented in data

Adult Study No state or even U.S. estimates of ASD prevalence among adults over 30 We know next to nothing about those adults with ASD/IDD who are not engaged in state-funded programs. Majority are older and perhaps have never received a formal diagnosis (of ASD) Likely have spent their entire lives at home in the care of family members (82%).

Adult Study Assessment of Area Adults with Autism Spectrum Disorder and Other Intellectual and Developmental Disability Table A.4. Summary of Estimated and Projected Number of Adults with ASD by County and Year Table D.2. Estimated Aggregate Annual Costs in Billions for Adults with ASD by Geography, 2017 Table D.3. Estimated Aggregate Lifespan Costs in Billions for Adults with ASD by Geography, 2017

What does your community look like What does your community look like? Who is funding in the ASD space in your community?

A caregivers road looks like…

Pre ALL No central location of updated resources No understanding of number of ppl with ASD and their profiles Only 4 out of 10 lead agencies had referral system (fax and non-PHI) Little cross communication of agencies on family level needs Providers unaware of other services Little incentive to collaborate and share information Underestimation of number of people on waitlist for diagnosis, therapies, services, waivers

What we now know *the maps & graphs following represent only ALL registrants

Year 1 Data Collection 10 Referral Agencies operating in TAV Connect 85 Users Barrier Identified (top 3 needs) Access to Case Management Support- Respite Care Support-Parent/Caregiver Education Referral in TAV Connect 1,701 sent

Top 3 Waitlists Identified Diagnostic Assessment Home and Community Based Services /CLASS (interchange) Applied Behavioral Analysis Therapy   Top 5 Service Summary records Case Management- Family Support Advocacy- Special Education Support Therapy-Applied Behavioral Analysis Diagnostic-Prescreening Parent Training-Autism Specific

Diagnosis “Pending Diagnosis” Look for this number to increase greatly They will require preliminary appointments (who will undergo ASD assessment) to complete ALL enrollment as “Pending Diagnosis”

Insurance Approximately 68% of registrants are on Medicaid/subsidized/no insurance. Medicaid dos NOT pay for ABA therapy.

School Districts “Younger” Children unaccounted for by diagnosis or ISD. This leads to the question, WHO is caring for these children? Is the care appropriate to address their disability? Diagnosis in ISD The distinction between MEDICAL and EDUCATIONAL Diagnosis remains a challenge in ensure services for the population.

DATA & SYSTEMS ALL Care Coordinator Post-diagnosis follow-up Case management follow-up Wait list follow-up Extra support and follow-up Safety net review Resource identification

What you GET when you register What you GIVE when you register Referrals – You will be linked to a team of community providers for diagnosis, therapy, respite, and other support services regardless of where you are on the spectrum now and in the future as your needs evolve.   Care Coordination – You will be linked to a Care Coordinator who will provide seamless referrals to ALL member agencies and information on other community services requested. If no referrals are needed, a Care Coordinator is available for future support and contact. Resources - Visit our website to view our Community Resource Guide designed specifically for individuals with ASD and their families/caretakers. Advocacy - Help shape legislation relating to autism issues. One voice is important. Many voices can make the difference. Contribute - Visit our website to recommend resources for our Guide, helping others get connected. Hope - Your registration in ALL will help us continue to identify the current gaps in services for people with autism, educate our community on barriers, build awareness and improve the system of care for people living with autism.

Workgroups staff from service organizations, city and state entities, and caregivers meet monthly Metrics Develop data and systems capabilities that connect existing service providers to individuals seeking services, evaluate outputs and outcomes to drive work Public Policy & Advocacy Develop and implement public policy and advocacy program to increase services and reduce barriers for individuals with Autism Stakeholder Engagement Engage and leverage stakeholders to increase awareness, drive registration and increase collaboration Professional Development & Capacity Building Expand capacity and increase professional development opportunities and resources

Autism Lifeline Links