By Lisa Ackerman
The Center for Disease Control and Prevention (CDC) recently announced that autism prevalence is up to 1 in 59 U.S. children (1.) That number should resonate with every family and warrants a clear plan of action. From day one, TACA was (and still is) talking about this important issue of understanding how many children are affected by autism. TACA initially shared these suggestions for the Autism Family Plan in 2016 (2).
I am writing this blog to share key points that should be considered for the Autism Family Plan. WHY HAVE A PLAN IN THE FIRST PLACE? As a country, we need to address this important health issue affecting 1 in 37 boys and 1 in every 150 girls (1.) A more recent parent survey shows the number even higher at 1 in 36 (3.) What is staggering is the annual U.S. costs of autism at $268 billion dollars (4.) This number is big and affects every tax payer. The bigger, uncalculatable 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.
Sadly, autism is still the least funded disability in America facing the most children. Since 1999, I have watched four presidents, in almost 7 terms, watch autism prevalence go from 1 in 5,000 to 1 in 59 yet we are no further along in a strategy to provide meaningful change and help for families living with autism. Here is the autism plan I feel is needed, based on my work with TACA as well as TACA’s 17+ year history supporting tens of thousands of families:
Plan item One: 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) (5.) We need to know about everyone; 2-year-olds, 52-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. In the recent CDC survey it indicates Arkansas and how they count every case of autism in the state. We need to mirror their practices across the U.S. (1.) In addition, we need a plan to include children and adults outside our school system as many families are choosing home-school due to the lack of appropriate placement and services.
Plan Item Two: Provide support to caregivers
Why: Very little to no support is provided now. Families are being crushed with stress, debt, complexity of issues not faced by families of typically developing children. We need to provide the necessary support from diagnosis and along the lifespan of the person affected.
Plan Item Three: Ensure states meet their obligations under IDEA Child Find program 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 thru the Individuals with Disabilities Education Act (IDEA.)
Further, because autism is a spectrum, we need more options, not fewer. We don’t want to remove any choices, but rather 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, so the services and resources need to support all choices.
Plan item four: Increase state compliance with Medicaid and Medical coverage requirements
Why: Families need this help yesterday. Treatment across the United States varies greatly. The American Academy of Pediatrics Standards of Care for Autism 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.
Plan item five: 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. The exclusion of my last statement: 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. Wait lists for approved services are also a tremendous issue.
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 forget cost savings! Some children can recover from autism and their symptoms and become tax payers. 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.
Plan Item six: 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 right here (6).
Earlier this year we were thrilled to see Kevin & Avonte’s Law S. 2070 start to protect the almost 50% of those living with autism who wander from safe environments often with deadly results PASSED (7.) This new law not yet implemented needs to be launched and monitored with enough resources to protect individuals living with autism.
Plan item seven: 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, so we go from having one person on government assistance to two, then add 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.
Plan item eight: Re-evaluate the “Learn the signs, act early” funding with the goal to boost early screening rates with a nationwide outreach campaign
Why? This has been a big part of the Interagency Autism Coordination Committee (IACC) efforts since 2006. They have spent almost $4 billion in taxpayer revenue and we are no further to prevention, treatment or help for families. Specifically, they have supported spending $42+ million for the CDC’s 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 (8.)
Plan item nine: 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, so this is a good start for parents to save for their children, as well as adults to be able to earn and save for themselves (9.)
Plan item ten: 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: 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.
Plan Item eleven: 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.
Plan item twelve: 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 (10.) Outdated and expensive technology can now be replaced easily. Training, appropriate applications, and monitoring of these solutions must also be part of the plan.
Plan item thirteen: Continue vigorous enforcement and education of Olmstead Housing Act
Why: There are tens of thousands 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 (11). A special task force is needed to identify the needs and plan humane solutions with employment options to address self-sustainability concerns.
Plan item fourteen: 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 almost $4 billion in funding with the IACC recommendations. We are no closer to any new treatments or 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 (12.)
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 (13.) 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 it’s funded programs has ever produced. The Autism Cares Act is up for vote in 2019 and we need to start working on defining that effort now.
Plan item fifteen: Dedicate new funding to autism protection and advocacy
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 similar chronic conditions such as what the AIDS, cystic fibrosis and elderly communities have established as guidelines and modify them slightly to meet the needs of the autism community.
In conclusion, any 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 the needs and with the dire predictions of the autism increase becoming more and more prevalent each year (14.) 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 affecting the most children. We cannot afford the $268 Billion and rising annual costs (4.) These costs are projected to reach $1 Trillion dollars by 2025. Additionally, there are the human costs. Every person should be valued. Every potential cultivated. Individuals with autism should not be left behind.
1. Autism prevalence1 in 59 https://tacanow.org/autism-statistics/
2. Presidential candidates: What should their autism plan include?
3. 1 in 36 US children have autism – parent survey: https://tacanowblog.com/2017/12/05/new-report-shows-1-in-36-u-s-children-has-an-autism-diagnosis-now-will-people-care/
4. Autism annual costs https://tacanow.org/autism-statistics/
5. IACC TACAnow blogs: https://tacanowblog.com/2016/01/04/the-iacc-needs-to-address-autism-and-wandering-how-can-parents-help/ https://tacanowblog.com/2015/08/07/why-would-a-government-panel-question-universal-autism-screening/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/
6. National Autism Association: Wandering, Bullying, Restraint, and Seclusion: http://awaare.org/
7. new wandering bill https://www.congress.gov/bill/115th-congress/senate-bill/2070
8. CDC Learn the signs, act early campaign: http://www.cdc.gov/ncbddd/actearly/
9. ABLE ACT reference and response http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/Achieving-a-Better-of-Life-Experience-ABLE-Act/ and https://www.congress.gov/bill/113th-congress/house-bill/647
10. TACA autism iPad project: https://www.youtube.com/watch?v=tWtn8MjJx2M
13. Subtypes in autism https://tacanowblog.com/2014/04/11/science-and-subtypes-in-autism/