1. Autism Lifeline Links

2. 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.

3. Collective Impact

5. https://www. norcalunitedway
“Collective Impact Changes Communities, Changes Lives” UWNorthern California

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

7. 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?

8. An example…

9. 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.

10. 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?

11. 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

12. 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%).

13. 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

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

15. A caregivers road looks like…

16. 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

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

18. 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

19. 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

20. 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”

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

22. 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.

23. 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

24. 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.

25. 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

27. Autism Lifeline Links