2020 is an election year (just in case you didn’t know)! Many are being barraged with messaging and commercials from every direction and it will continue. My hope is that the autism community can drive a unified messaging and support for individuals living with autism.
Please note: As a 501c3, TACA cannot tell members how to vote. TACA can only share information and let them decide.
I am writing this blog to share key points for presidential candidates to consider for their autism plan. We have done so in the past.1 Personally, I will also be reaching out directly to each candidate and their staff. My goal is for families to share these points with their representatives and favorite candidate. Families living with autism have a voice. I hope they use it and either share this plan or speak up with a plan that will help influence action for autism.
Why have a plan in the first place? As a country, we need to address this important health issue affecting 1 in 54 US children.2 Candidates need to know this is a front-of-mind issue affecting many families living with autism. They also need to know we need help.
Sadly, autism is still the least funded disability in America facing the most children. Since 1999, I have witnessed four presidents, in almost seven terms, watch autism prevalence go from 1 in 5,000 to 1 in 54 yet we are no further along in a strategy to provide meaningful change and help for families living with autism.
I feel this updated autism plan is needed, based on my work with TACA as well as TACA’s almost 20-year history supporting tens of thousands of families.
Why is an autism strategy needed? Between 1990- 2019 the cost of autism is estimated at $7 trillion (with a T!) dollars.3 This number is big and affects every tax-payer. The bigger, incalculable number is the human cost. This issue warrants our attention, resources, and help. We can no longer ignore or explain away the increase in autism prevalence. This plan doesn’t include research. (That is for another time.) This plan addresses the needs of families living with autism TODAY.
In order to move forward with positive change for the autism community, here is my proposed plan:
1. Perform an Autism Census
Why: We need to count EVERYONE with a formal diagnosis of autism in an actual census. At TACA, we have been asking for this since 2007 through our interactions with the Interagency Autism Coordinating Committee (IACC).4 We need to know about everyone; 2-year-olds, 62-year-olds and every age in between. We also need to know their needs and the severity of the diagnosis. We are missing crucial data.
To be clear, this full census only needs to count those diagnosed with autism by medical professionals. A recent CDC survey indicates how Arkansas counts every case of autism in the state. We need to mirror their practices across the United States.2 In addition, we need a plan to include children and adults outside our school system, as many families are choosing to homeschool due to the lack of appropriate placement and services. We do this for almost every other condition, and it needs to be done for autism.
2. Provide Support To Caregivers
Why: Very little to no support is provided now. Families are being crushed with stress, debt, and complex issues not faced by families of typically developing children. We need to provide the necessary support throughout the lifespan of the person affected. This is especially true for families living in COVID-19 times.
3. Ensure States Meet Their Obligations Under IDEA Child Find To Identify, Screen, and Refer Children With Disabilities for Services
Why: Based on the thousands of support calls TACA receives from parents, this is one of the top issues families face. Often because of underfunding and staff shortages, agencies put in place to actually help families are, instead, sharing misinformation and putting families on wait lists. Resolve wait lists and ensure a free and appropriate education mandated by law through the Individuals with Disabilities Education Act (IDEA.)
Furthermore, because autism is a spectrum, we need more (not fewer) options. We don’t want to remove any choices. Rather we want to expand the options for families and individuals to seek what suits their needs. To that end, limiting options to “inclusion-only” is detrimental to our community. Not everyone can or wants to tolerate “typical” placement in jobs, schools, housing, and relationships. Services and resources need to support all choices.
4. Increase State Compliance With Medicaid and Medical Coverage Requirements
Why: Families needed this help yesterday. Treatment across the United States varies greatly. The American Academy of Pediatrics Standards of Care for Autism5 should be followed and expanded with the new research available. Based on the thousands of instances of support we provide every year, we know these standards are rarely followed. This must change.
5. Improve Access To Autism Services In The Affordable Care Act (ACA) Marketplace and Through Private Insurance for All Families
Why: For most of the TACA families that we serve, insurance has become harder to navigate in order to procure coverage for best practices, scientifically proven therapies, and treatments. An exception to my last statement is in states where no insurance act was available or for families new to insurance, they have better coverage than before. For many families, the red tape and co-pays are cost prohibitive. These two factors stop some families from trying altogether.
Let’s make that better for families. If we invest early in young children with autism, we can see tremendous cost savings later on in their life. And even better, some children can recover from autism and their symptoms and become taxpayers. We should at least try with every child. They have a bright future. The ACA is not fixed for families living with autism and needs improvement to eliminate red tape and co-pays for each treatment or visit.
6. Address Issues Harming Individuals With Autism: Wandering, Restraint, Bullying, and Seclusion
Why: I love the work of National Autism Association. They have done the research and definition of need in the areas of bullying, restraint, seclusion, and wandering. No need to spend millions to do a study! The answers are available from the NAA.6, 7
Thankfully the Kevin & Avonte’s Law S. 2070 was passed to start to protect the almost 50% of those living with autism who wander from safe environments often with deadly results.8 This law needs help with implementation and monitoring. Adequate resources must be provided to protect individuals living with autism. In addition, first responder training for people living with disabilities needs to be added.
7. Plan for Adults: What Happens When the Bus Stops Coming?
Why: I want to mention something about what happens at age 21 (in some states up to 26) when the school bus stops coming and our kids age out of all supports. Parents become full-time caretakers, and most have to quit working because there are no programs in place for the affected. We go from having one person on government assistance to two. Add in isolation and it becomes a recipe for despair. While the long-term goal is to create employment for most, it’s not feasible for all. Especially in the short-term. We need appropriate “adult day care” and other life skills opportunities for our adults when employment opportunities are not available.
8. Re-Evaluate “Learn the Signs. Act Early.” Funding With the Goal To Boost Early Screening Rates Through a Nationwide Outreach Campaign
Why: This has been a big part of the Interagency Autism Coordination Committee (IACC) efforts since 2006. They have spent over $4 billion in taxpayer revenue and we are no further to prevention, treatment, or help for families. One program funded through the IACC is the CDC campaign “Learn the Signs. Act Early.” Since the inception of this campaign, the average age of diagnosis has gotten worse, not better, by a month.9 It has become clear from last two autism prevalence reports that more work needs to be done in assessing all children including often overlooked minority groups.2
9. Educate and Ensure Consumer Protection for ABLE Act Account Beneficiaries
Why: The laws passed do help. Now we need to educate families to understand, set up and benefit from savings accounts for individuals with autism. For too long, people with disabilities have been relegated to living in poverty because of the government asset test. The ABLE ACT is a good start for parents to save for their children, as well as adults to be able to earn and save for themselves.10
10. Educate and Expand the Adult Vocational Rehabilitation Program
Why: Many families are unaware of currently available programs for adults. We need to scale this program up to educate families about its existence and prepare for the additional children who will become adults. A large point to consider is that adults will not be able to work if they don’t receive the necessary treatment and therapies early, at suspicion or time of diagnosis.
This plan needs to accommodate all areas of ability and disability. We need to shoot for the stars, but also address the needs of all functioning levels. Consult with groups like TACA who have been working in the areas of autism for over 17 years and can provide insight to drive a well-thought-out plan.
11. Promote Multi-Sector Awareness Campaign
Why: We have two distinct groups to help in a multi-sector awareness campaign. Group one is families living with autism. We would like to drive them to treatment and therapies based on their child’s needs. We need to end the “hopeless” diagnosis for families. Group two is the general public and clinicians. We would like them to understand the autism spectrum and the hopeful therapies and treatments available based on updated research. The bottom line: autism is a treatable condition and worth investing in for results.
12. Ensure Access to Assistive Technologies
Why: Technology can change the life of an individual living with autism, especially individuals who cannot speak or have trouble communicating. Often in schools technology is outdated, broken, or unusable. So many families are offered technology that does not help the individual. The plan needs to include a variety of options and, more importantly, a way to evaluate options based on an individual’s needs to enable communication.
One example is the TACA iPad video project from 2011.11 Outdated and expensive technology can now be replaced easily. Training, appropriate applications, and monitoring of these solutions must also be part of the plan.
13. Continue Vigorous Enforcement and Education of Olmstead Housing Act
Why: There are tens of thousands of people with autism on wait lists for help in the area of housing. We are very close to two critical tipping points: children aging out of support needing housing and aging parents. 50,000 adults are aging out of the system every year.12 A special task force is needed to identify the needs and plan humane solutions with employment options to address self-sustainability concerns.
Autism Housing Network has more information on housing for adults.
14. Significantly Increase Funding and Revamp Autism Research Funding
Why: Sadly, past autism research is a big area of concern. This is where the US government has invested over $4 billion in funding with the IACC recommendations. We are no closer to any new treatments, prevention or support for families since the IACC started in 2006. We have dumped millions in genetic research. I do not suggest having the government run this anymore as their programs are not generating results with taxpayer dollars. You can read more about the history of the IACC and their lack of accomplishments here.13, 14
We need the government to fund innovation. First, we need to start with subtyping. By subtyping groups, those who wish to have help or need help can be our focus. Some research has been completed, but we need to do more.15 There are some incredible universities and physicians working with autism every day for decades who, with the right resources, could drive positive change with fewer dollars required. We have seen more innovation and effective treatments from smaller universities and research entities that are privately funded than the government or its funded programs has ever produced.
15. Dedicate New Funding To Autism Protection and Advocacy – Urgently Needed Now Due To COVID-19
I would like to see an autism czar that could drive this and help guide action for the pressing autism issues. The IACC is proving to not be a good investment as it stands today. We need to follow best practices used in other chronic conditions such as AIDS, cystic fibrosis, or in elderly communities. Take those established guidelines and modify them slightly to meet the needs of the autism community. These efforts would include the additional drastic needs created in the autism community since COVID-19 has struck our nation. The autism community has been dramatically affected by the removal of school, necessary therapies and related services.16
In conclusion, any chosen plan needs to address the rapid increase in the prevalence of autism and the growing needs of this community. We are very behind in addressing these needs. With the dire predictions of the autism increase becoming more and more prevalent each year, the autism community needs a leader that can take on the issues and drive solutions.
We can no longer continue with autism being the least funded disability in the US yet affecting the most children. We cannot afford the current $7 trillion cost to date and anticipated $15 trillion projected by 2029.3 Additionally, there are the human costs. Every person should be valued. Every potential cultivated. Individuals with autism should not be left behind.
Note: Comments telling voters how to vote will not be approved. Please share your thoughts with references and without sharing thoughts on a candidate. Thank you for understanding.
1. Past Blogs:
- The Autism Community in Action. (2016, February 17). Why Would a Government Panel Question Universal Autism Screening: Update. Moving Autism Forward by Team TACA. https://tacanowblog.com/2016/02/17/why-would-a-government-panel-question-universal-autism-screening-update/
- The Autism Community in Action. (2018, May 1). Autism Family Plan Needed: 15 Points to Include. Moving Autism Forward by Team TACA. https://tacanowblog.com/2018/05/01/autism-family-plan-needed-15-points-to-include/
- The Autism Community in Action. (2016, January 20). Presidential Candidates: What Should Their Autism Plan Include? Moving Autism Forward by Team TACA. https://tacanowblog.com/2016/01/20/presidential-candidates-what-should-their-autism-plan-include/
2. Maenner, M.J., Shaw, K.A., Baio, J., et al. (2020). Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. MMWR Surveillance Summar,. 69(No. SS-4), 1–12. http://dx.doi.org/10.15585/mmwr.ss6904a1
- PDFs of all ADDM Prevalence Reports released by the CDC can be found here.
3. Cakir, J., Frye, R. E. , Walker, S. J. (2019). The Lifetime Social Cost of Autism: 1990-2029. Research in Autism Spectrum Disorders, 72. https://doi.org/10.1016/j.rasd.2019.101502
4. IACC TACAnow Blogs:
- The Autism Community in Action. (2016, January 4). The IACC Needs to Address Autism and Wandering: How Can Parents Help? Moving Autism Forward by Team TACA. https://tacanowblog.com/2016/01/04/the-iacc-needs-to-address-autism-and-wandering-how-can-parents-help/
- The Autism Community in Action. (2015, August 7). Why Would a Government Panel Question Universal Autism Screening? Moving Autism Forward by Team TACA. https://tacanowblog.com/2015/08/07/why-would-a-government-panel-question-universal-autism-screening/
- The Autism Community in Action. (2013, December 31). If the IACC’s Strategic Plans Were IEPs, Would They Be In Non-Compliance? Moving Autism Forward by Team TACA. http://www.tacanow.org/blog/the-iacc-reconvenes/https://tacanowblog.com/2013/12/31/if-the-iaccs-strategic-plans-were-ieps-would-they-be-in-non-compliance/
5. American Academy of Pediatrics. (2020, January 1). Identification, Evaluation, and Management of Children With Autism Spectrum Disorder. Pediatrics. doi: https://doi.org/10.1542/peds.2019-3447
- PDFs of previous AAP Standards of Care can be found here.
6. National Autism Association. (n.d.) NAA’s Autism Safety Site. http://awaare.nationalautismassociation.org/
7. Fournier, W., McIllwain, L. (2012, January 20). Lethal Outcomes in Autism Spectrum Disorders (ASD) Wandering/Elopement. The National Autism Association. https://nationalautismassociation.org/wp-content/uploads/2012/01/Lethal-Outcomes-In-Autism-Spectrum-Disorders_2012.pdf
8. Congressional Research Service. (2017, December 17). Summary: S.2070 – Kevin and Avonte’s Law of 2017. https://www.congress.gov/bill/115th-congress/senate-bill/2070
9. Centers for Disease Control and Prevention. (2020, July 14). Learn the Signs. Act Early. http://www.cdc.gov/ncbddd/actearly/
10. Congressional Research Service. (2014, December 3). Summary: H.R.647 – ABLE Act of 2014. https://www.congress.gov/bill/113th-congress/house-bill/647
11. The Autism Community in Action [TACANow]. (2012, December 3). iPads and Autism – Innovation in Communication. YouTube. https://www.youtube.com/watch?v=tWtn8MjJx2M
12. Roux, A. M., Shattuck, P. T., Cooper, B. P., Anderson, K. A., Wagner, M., & Narendorf, S. C. (2013). Postsecondary employment experiences among young adults with an autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 52(9), 931–939. https://doi.org/10.1016/j.jaac.2013.05.019
13. The Autism Community in Action. (n.d.). What Constitutes an Emergency. http://www.tacanow.org/blog/what-constitutes-an-emergency/
14. The Autism Community in Action. (n.d.). What The IACC Must Consider. https://tacanow.org/blog/what-the-iacc-must-consider/
15. The Autism Community in Action. (2014, April 11). Science and Subtypes in Autism. Moving Autism Forward by Team TACA. https://tacanowblog.com/2014/04/11/science-and-subtypes-in-autism/
16. Albano, D. (2020, August 24). Autism community ‘scared to death’ with students losing ground as distance learning continues. The Orange County Register. https://www.ocregister.com/2020/08/24/autism-community-scared-to-death-with-students-losing-ground-as-distance-learning-continues/