The struggle continues for families seeking access to autism services
April 13, 2016
Shortages of qualified service providers, insurance loopholes, and Medicaid shortcomings plague equal access to autism services
This month we are celebrating Autism Awareness Month with a blog series on what it will take for the world to move beyond autism awareness and toward autism acceptance. The blog series focuses on the challenges individuals with autism still face to being truly accepted in all aspects of society.
Last week we discussed some of the difficulties families have in procuring an autism diagnosis for their children early enough to reap the full benefits of early intervention, which can typically only begin once a diagnosis has been given. You can check out the full blog post here. This week we will discuss what happens after diagnosis, and some of the main barriers to treatment, including a shortage of qualified service providers leading to years-long wait lists, the shortcomings of Medicaid when it comes to helping families access treatment, and complicated insurance loopholes that end up denying families services.
Diagnosis does not always lead to immediate treatment
Over the last 20 years, the nation has seen an unprecedented increase in autism diagnosis. The latest numbers indicate that one in 68 children now have the diagnosis, leading some to conclude that autism now amounts to a national health crisis. Only this month did the CDC’s new numbers offer any reprieve. For the first time in history prevalence rates did not go up; the one in 68 figure remains stable from 2014, providing the first glimmer of hope that perhaps autism prevalence has peaked.
In July of 2014 shortly after the one in 68 number was released by the CDC, the nation responded to the crisis. The Centers for Medicare & Medicaid Services (CMS), a federal agency, released guidance announcing that under Medicaid, Early and Periodic Screening, Diagnostic and Treatment (EPSDT) should cover medically necessary treatments for autism for children and young adults up to the age of 21. This was a major victory for autism advocates and for individuals with autism and their families.
This guidance regarding Medicaid was released on the coattails of a slew of state autism health insurance mandates that had slowly been passing across the country, requiring certain insurers within states to provide coverage for autism diagnosis and treatment. These mandates vary widely from state to state, but the general idea is the same: most insurance companies operating within the state must cover certain diagnostic and treatment services for children with autism. To date, 46 states have passed some form of autism health insurance mandates.
Mandated coverage does not necessarily mean access to treatment
But just because Medicaid and private insurance are required to cover services does not make those services readily available. In last week’s blog we discussed how delays in autism diagnosis related to a variety of issues delay children’s access to treatment, specifically early intervention. But even once children do receive a diagnosis, treatment can still be a long way off. Many families, including those in states with mandates covering a broad range of services end up on waiting lists for years. One of the main reasons families can have difficulty accessing services is due a lack of qualified service providers.
This shortage of qualified providers is a complex issue. One factor, of course, is skyrocketing prevalence rates over an exceptionally short period of time (prevalence increased from one in 150 in 2002 to one in 68 in 2014), making it nearly impossible for the number of providers to keep up with the demand. Even as states have sought to expand programs for training, credentialing, and licensing providers, these programs take time, and in most places have not yet caught up with the demand for services they are attempting to fulfill.
Additionally, as prevalence rates have continued to rise, Medicaid and private insurance have expanded their coverage of autism services, further increasing the demand for qualified service providers. Not only do more people have an autism diagnosis, but under new policy reforms, more people are covered for more services.
In Nevada, for instance, a state with a reputation for long wait lists, a new Medicaid-sponsored autism program began reimbursing nearly 2,000 eligible families for services at the beginning of 2016, yet there are only 274 Registered Behavior Technicians (certified staff working under the supervision of Board Certified Behavior Analysts qualified to provide Applied Behavior Analysis (ABA), the most common and widely seen as the most effective treatment for autism symptoms) covering the entire state, which estimates there are about 7,000 children with an autism diagnosis who are eligible for services. In Utah, prevalence rates are even higher than the national average, with one in 54 children diagnosed with autism, and the shortage of qualified professionals is just as dire. In Utah County, 4,000 children with autism recently qualified for Medicaid services, with only 18 certified behavior analysts in the county who can supervise these children’s autism programs.
Where Medicaid is falling short
While the guidance released by CMS in 2014 on how to interpret Medicaid was intended to ensure struggling families had equal access to services, this has not always been the case. Further compounding the problem of personnel shortages is the issue of what it actually means to be a qualified service provider. In some states, Medicaid can only contract with providers who are licensed, but many states do not offer state licensing to certain kinds of therapy providers (this is particularly the case when it comes to ABA providers).
For instance, in Washington State, until a bill was signed in April of last year, there was no license offered by the state for behavior analysts, placing behavior analysts –and those reliant on Medicaid for covering ABA treatment–in a Catch 22. While state Medicaid programs were required to cover certain services, there was no pathway for providers to qualify to provide these services. Even when such pathways to licensing are available, licensing can be rigorous and time consuming, offering few incentives for providers to undergo the laborious and expensive process when they can just as well service families with private insurance.
In a recent story for West Virginia Public Broadcasting, Jill McLaury, an ABA provider in West Virginia (a state where no ABA providers are currently accepting Medicaid) explained her predicament, “To do Medicaid I would have to be a licensed behavioral health facility and right now I’ve got a waiting list of over 50 families who are private insurance that I’m not able to serve,” she says. “So from a business perspective for me to then have to do a $1,500 application fee, to have a lot more scrutiny over the services – it doesn’t make sense when I’m not even able to provide services to the clients who already have funding.”
Medicaid can create other barriers to access for families. While services might be covered, Medicaid reimbursement rates can be much lower than what providers might receive from private insurance companies, and can fail to attract qualified personnel.
In places like Washington State and West Virginia, patients on Medicaid are much more likely to end up on waiting lists for services, while families with private insurance or families who can pay out of pocket are sometimes able to elide waitlists all together, creating serious inequality in terms of who can access treatment.
To give a little perspective, providing a child with a full ABA program (doctors typically recommend anywhere between 10-40 hours a week) can be an exorbitant expense. With sessions ranging from between $50-100 per hour, families who are stuck on waitlists and want services, paying out of pocket could cost them as much as $30,000-40,000 a year–more than the annual salary of many parents who qualify for Medicaid.
How insurance companies are denying families services
While most states now have some kind of mandates in place to require insurance companies to provide children with autism services, there are loopholes in the system that are preventing families from accessing effective treatment.
37 states mandate that ABA benefits be covered by regulated insurance plans, while only 27 states mandate that ABA be provided by both private insurance and under their healthcare exchanges. What this can mean is that in the other 23 states, even if it is one of the 37 states that mandate ABA be covered under regulated insurance plans, insurance purchased through the Affordable Care Act exchange may not cover ABA. While ABA is widely agreed to be the most effective therapy to treat autism symptoms and help children learn vital social and communications skills, insurance companies in certain states are denying these services to families who are otherwise eligible for them, claiming that ABA is not a medical treatment and/or considered experimental.
A family in Florida recently learned this the hard way. After moving from Massachusetts (where their 12 year old son who is diagnosed with autism had been receiving ABA for years) to Florida, they purchased a $1600 a month plan from the open exchange believing it would be required to cover ABA for their son, since Florida is one of 37 states that mandates ABA to be covered by regulated insurance plans. Turns out they were wrong. Their insurance company, Florida Blue issued the following statement regarding the autism services covered:
Florida Blue health insurance plans provide coverage for several Autism Spectrum Disorder treatments such as physical therapy, occupational therapy and speech therapy. Applied Behavioral Analysis (ABA) therapy is not covered by individual plans because it is considered experimental or investigational in the treatment of Autism Spectrum Disorder, as there is a lack of scientific evidence to draw conclusions as to the safety, efficacy or effects on health outcomes.
Florida Statute 627.6686 regarding health insurance coverage of individuals with Autism Spectrum Disorder does not pertain to plans offered in the individual market or any health insurance plan provided to a small employer.
As consumers shop for insurance during Health Insurance Marketplace open enrollment, we encourage them to contact us to help them research specific services, providers or medication they may need so they are fully aware of what is covered by the plans they are considering.
Other loopholes exist as well. Despite the 2014 guidance issued by CMS, which stated that autism diagnosis and treatment should be covered under EPSDT, this language is open to interpretation, and states like Alabama (one of seven in the country) have chosen not to include ABA as a covered benefit, in regulated insurance plans or elsewhere. And while advocacy groups are working on moving legislature forward that would require regulated insurance companies to cover ABA in Alabama, most people in the state are covered by Obamacare plans or Medicaid, neither of which would be subject to state law.
Autism acceptance means ensuring equal access to treatment for all
While enormous barriers to accessing effective autism treatment exist, things are getting better. States like Mississippi are investing in undergraduate and graduate training programs for people interested in becoming autism service providers and many states are moving forward on ensuring that Medicaid and Obamacare cover ABA. Furthermore, waitlists for services have slowly been shrinking and more and more qualified service providers are entering the field.
Despite these gains, they are not enough, especially for families whose children remain on waitlists and without the financial resources to get their children access to the critical services they need to learn to communicate and function in the world they live in. Until we we ensure that every child, whether they live in New Jersey or Alabama, whether they are rich or poor, whether they are on Medicaid, Obamacare, or private health insurance has access to the services they need when they need them, we have not achieved true autism acceptance.