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Autism, ABA and the Virginia General Assembly: Legislative Updates for Parents and Caregivers

Autism, ABA and the Virginia General Assembly: Legislative Updates for Parents and Caregivers

Hello and welcome. My name is
Christy Evanko. I’m a board-certified and licensed
behavior analyst, but I’m also a parent of a ten-year-old
son with autism spectrum disorder. I’m dedicated to doing
all I can do for persons with autism as well as
disseminate information. I’m here to speak to you about
some of the recent laws regarding autism and Applied
Behavior Analysis. This presentation is intended for
parents and caregivers, much persons with autism, although
anybody is welcome to view it. First, I need to start by saying that I am
not a lawyer and I have never studied the law. I’m a behavior
analyst and I have researched and supported many of
the laws that I’ll talk about today but this presentation
does not constitute legal advice, so if you have any
specific questions, you should consult a lawyer. Today
I’m going to talk about the laws related to autism spectrum
disorder or ASD, sometimes called that, in the Commonwealth,
then I’ll talk about the relation between ADA and
the Applied Behavior Analysis and autism and that will
lead me to the laws in the Commonwealth and then I’ll briefly
touch on how you can change the law and then I’ll end
with resources.
So there are several laws in Virginia that relate to
autism, and this list is not completely comprehensive, but
it does touch on the ones that are most germane. Each
year brings new legislation. The first law I want to talk
about was enacted in 2011 and it’s the Autism Advisory
Council, that was created to make recommendations to the
legislature, and in 2014 most recently a new bill was
created that extend the council through July 1 of 2015.
Now, this council has met and viewed lots of presentations
regarding the issues related to autism. They made three
recommendations for 2014. The first was for the General
Assembly to provide sufficient long-term funding to
eliminate the waiting lists and vocational rehab and
eliminate the order of selection, also for the GA to
reduce the waiting list for the ID and the DD waivers with
additional funding, and for the GA to require the Board of
Medicine to provide and distribute information about
autism. That last suggestion was taken and actually there
was another law that was passed this year for requiring
the Board of Medicine to put information about autism on
its website. The Board of Medicine is now required to make
information about the identification, diagnosis and
treatment of autism, as well as the role of providers and
identifying, diagnosing and treating autism available to
those who are licensed by the Board of Medicine. This
information is not yet available but it’s expected to be
up there in July of 2015. Another law that was passed in 2013 directed
the joint commission on healthcare to study the service
for persons with autism transitioning out of high school.
If you are interested, you can find the full report or
website listed on this slide, the joint committee members
actually voted not to take any action on those.
One law that really had a great effect was HB325, that
was the bill number, requiring paraprofessionals who work
with children with autism in the schools to receive
training. Competencies were approved by the board in
January of 2013. Now local school boards are either
required to provide training or they can use the training
developed by VCH, free of charge. The website has more
specific information and the address is listed here. Many
thanks to John Maloney, who was instrumental in getting
this law passed. Another recent law requires the department
of behavioral health, DBHDS and DRS to establish
goals to help persons with autism obtain and sustain
employment. Although accounts well intentioned, it is
difficult for these organizations to fulfill the request
without additional funding. There were several regulations,
including that they receive authority as new licensed
category. This is not happening because new licensed
analysts can obtain through waivers as well as through the
aging and rehabilitation services. Another recommendation
was to expanded the development of rehabilitative services
to respond to the increasing demand for autism services
and DRS has been doing this yearly. Another recommendation that was not able to
come to light was to implement a five-day regional
autism support training work training for 750 participants
and the funding was not provided. But in October of
2015 DBHS released a strategic plan for employment first.
In 2014 a law was passed for applicants with autism
or a disability be put on their license, a designation of
autism or intellectual disability as well as hearing
and/or speech impairment and insulin-dependent diabetes
on a state-issued ID card. Hearing and speech and
the insulin-dependent diabetes is already a provision
on licenses, but in order to request these and
request having this put on your license, the applicant has
to have a signed statement by a licensed physician.
So before I talk about the laws that specifically apply
to ABA, I want to briefly discuss the relationship between
autism and ABA. So when you say Applied Behavior Analysis
or ABA, many people have preconceived notions of what that
mean and often people will think of one or a few
techniques they have heard of or seen under the guidance
and heading of ABA such as discrete trial training or
therapists working one on one with a child teaching skills
in a systematic manner or reinforcing behavior that you
want to see but extinguishing behavior you don’t want to
see, even the use of view schedules or aids. What ABA really is is a science based on the
principles of behavior. The principles were described
by Skinner in the 1960s and today ABA has involved evidence-based
techniques, including shaping, reinforcement, extinction,
environmental changes, and more that are established on
the principles of behavior. Often when you think of
behavior, you might think of maladaptive or negative
behaviors you don’t want to see like aggression or
screaming, but behavior analysis frequently focuses on
reinforcement of prosocial or behaviors you do want to see
like speaking, interacting with peers, focusing on
academic tasks and following instructions. ABA is marked by extensive data collection
to ensure that interventions are effective in changing
the behavior in a significant manner. Once interventions
shown by the data to be ineffective should be changed or
they are changed. ABA is not something that is solely
done or performed in a classroom or controlled setting,
but, rather, the use of the principles that are
extended everywhere, including the home or the community,
from helping the child get dressed in the morning
to waiting in line at McDonald’s or getting his healthcare.
Finally in Virginia the law stipulates that applied
behavior analysis must be provided or supervised by a
licensed behavior analyst. The definition of ABA differs
slightly depending on who you ask. The Behavior Analysis
Certification Board, Board of Medicine, behavior analysts,
all these organizations have their own definitions but my
favorite way to explain the ABA is through 7 dimensions.
These dimensions were defined in 1968 in an article
entitled Some Current Dimensions of Applied Behavior
Analysis. In a nutshell, they’re applied, behavioral,
analytic, technological, conceptual systems effective,
generality. The analysis is grounded in all seven of
those dimensions. In brief, Applied Behavior Analysis is
applied in that it is used to solve problems of social
importance or problems that are important to people’s
daily lives. It is behavioral in that it focuses on
measurable behavior or behavior that can be seen and
evaluated. It is analytic in that it requires concrete,
showing it has an effect on behavior. It is technological, and it is conceptually schematic
because it arises from scientific theories. It is effective
in that it produces solid outcomes and it’s able to
be generalized so the effects are not just in the environment
in which they are taught.
ABA is used in a variety of areas from animal training
to managing employees in the workplace, from marketing, to
helping people with disabilities. ABA or behavioral treatment is the only treatment that’s been
shown to be effective for children with autism.
The most famous extension of ABA to autism began in
1987 with Lovaas’ landmark city where he used it as a
treatment of young children diagnosed with autism. In
that study some children received the treatment while
others did not. The group of those that received the
treatment, almost half were said to be indistinguishable from typically developing peers by the age
of 7. The group that did not, only 2% received what
they call normal educational intellectual functioning. Based
on extensive research by ABA and its applications to persons
with autism spectrum disorder, in 2000 the surgeon
general noted the success of ABA in the treatment
of children with autism. In 2001 the National Research Council
noted 40 years of research testifying as to the effectiveness
and noted ABA is the only treatment empirically
demonstrated to be effective with children with ASD. Since
1985 there have been more than 500 articles regarding
ABA and autism. Most recently the national standards project
was updated and that actually now includes persons
over the age of 22 and the report shows the efficacy
of interventions rooted in ABA. I want to talk
a little bit about who is a behavior analysis professionals.
There are four levels of behavior analysts, the fourth
being the registered behavioral technician. There’s
a doctoral level, there’s a master’s level, and those
are referred to as licensed behavior analysts when they receive
their license. The third level is a bachelor’s level
or BCaBA, and then licensed assistant behavior analyst.
BCaBAs are required to receive supervision from BCBA’s
in order to practice. Aside from the type and amount of
schooling one has received, there are also differences in
the number of experienced hours needed to certify and the
examination taken based on the level, but there’s not
much of a difference in terms of what they do.
Now, additionally in June of 2012, the BACB or behavior
analysis certification board announced the development of
a new credentialing program for registered behavioral
technicians, RBT’s, these professionals are the frontline
staff who implement behavior plans. This is a very new
certification but there are already several RBT’s
throughout Virginia. As I said before, behavior analysts
are certified by the behavior analyst certification board
or the BACB and this is a national certification organizations that was established in 1998.
There were many requirements and you can see the long
list of them for those wishing to be certified, including
having a bachelor’s, master’s or doctoral degree in
a related area, postgraduate education on top of that in behavior
analysis through an accredited school, supervised experience
between actually 500 is the lowest and 1500 hours
depending on the certification level and the intensity of
the program. The passage of a board certification, ongoing
certification requirements and continuing education
requirements. The BACB reviews and raises standards for
its certification programs on an ongoing basis. For
instance, there are recent guideline changes and
supervision, degree eligibility requirements, including
university accreditation, continuing education requirements, BACB. The BACB also publishes
a task list of items which every behavior analyst should
be familiar with before taking the exam. The current edition
is the fourth edition task list, implemented in 2015.
Additionally the organization provides professional disciplinary and ethical standards with which
all certificates and candidates must comply, as
well as defined lines for responsible conduct for
behavior analysts. The website is a good
resource. Now, behavior analysts do many different things
that are not limited to what is shown on this slide,
but some of the things that they do is they conduct
and analyze assessments of behavior and that includes
functional behavior assessment and that consists of interviews
and direct observation, they also may do a skills
assessment such as the Global Behaviors Assessment and
Placement Program, a very common tool. From the analysis
and assessments, the behavior analyst then designs
behavior interventions to target the increase of prosocial
and decrease of maladaptive behaviors.
Behavior analysts may implement interventions but most
often will train others, paraprofessionals, tutor or aides
to deliver the interventions. Throughout the treatment
implementers take data, these data are analyzed by the
behavior analyst who will make changes in the treatment
plan based on those data. The behavior analyst keeps
abreast of research and behavior analyst through journals,
research, continuing education. This is a map, it may be
difficult to see, but it’s a map of licensed behavior
analysts in Virginia as of April of this year. You can
see there are large concentrations in the north and in
Richmond and Hampton Roads areas, there are quite a few
out west as well. This map actually includes both
behavior analysts and assistant behavior analysts. Note as of April 26 there are 591 licensed
behavior analysts and 106 licensed assistant behavior
analysts, those are licensed and including providers
who live outside of Virginia but practice here and
thus they need a license to practice here. According to the
BACB there are actually 508 BCBA’s including master’s and
doctorals, and 87 ACBA’s in the Commonwealth.
This next slide is taken from the CDC and it shows the
growth in cases of autism spectrum disorder in the U.S.
over a ten-year period from 2000 to 2010. I want you to
take a look at that curve because you’ll note that curve
is actually similar to this curve, and this slide shows
the number of behavior analysts in Virginia. It should
become no surprise to anybody that there’s growth in the
number. In 2014 alone that profession grew from 400 to
600 behavior analysts. There’s nothing that indicates
that this trend is sloping at all. So that was a brief
discussion on the relation between autism and ABA.
Next I want to talk about the history of ABA and the
legislature. There are four main laws I’ll be discussing
that pertain to behavior analysts, including the 2011
Autism Insurance Law, the 2012 Licensure Law, 2014
Advisory Board and Exception Law and 2015 update to the
Autism Insurance Law. These laws were all sponsored by Todd Griffin,
who we show gratitude for being a champion with autism
and behavior analysts. Let’s begin with Autism
Insurance Law. This law was tirelessly lobbied have I the
by the Virginia Autism Project and Autism Speaks for many
years before it finally palace in 2011. According to Autism
Speaks, 40 states had some version of Autism Insurance
Law as of April 2015. Five other states are actively
pursuing legislation and only five states are not currently
pursuing such a law. In Virginia it took us about ten years to
get a law that would pass. Virginia Autism Project and
Autism Speaks tirelessly advocated year after year
and it was finally awarded on in 2011. At that point
in time only 20 other states had such laws. To be clear, the
Virginia Autism Law requires insurance companies to
pay for care for kids with autism when it is deemed medically
necessary. Prior to this law, insurance companies can
state that they did not cover autism and that the parents
submitted the diagnosis to insurance companies, there was
a large chance that the company would not pay for any
services of any type, not just ABA. Services now covered
for children with autism include behavioral health
treatment, pharmacy care, psychological care, therapeutic
care such as speech and OT and PT and ABA when provided by
a licensed person. So now in Virginia kids can’t be
denied insurance coverage solely because they’re diagnosed
with or receive treatment for autism. There were some
caveats to this law, there was an annual dollar cap of
35,000 and age cap of two to six years and in practice
this does not translate to every company in Virginia
providing insurance for kids with autism. You’ll find
that companies are exempt because they don’t have enough
employees to war ability the mandate or you might come
across a self-funded plan that doesn’t include the
services although many have elected to despite the mandate
exception. You might also find someone who works for a
company that is headquartered in a state without an Autism
Insurance Law and those with plans under the Affordable
Care Act or ObamaCare will also not be covered most
likely. For more information on what to do if your
company does not cover ABA, see Autism Speaks website and
click advocacy. An exception for self-funded plan was not
under negotiation, but no state can actually place a
mandate on those types of plans. Many of you may know that in 2015 the Virginia
Autism Project and Autism Speaks went back to the
legislature to remove the age cap from the 2011 law. Unfortunately
to get it passed, we had to increase the age
cap to age ten; this is still a win. This goes into effect
in January of 2016. Another change to the law this year
had to do with a federal law expected to change soon and
that law will raise the number of employees needed to still
be considered a small company from 50 to 100.
Therefore in 2016 companies with 100 or fewer employees
will be exempt from the mandate.
Another change to the 2011 law that was not a result of
the passage of the 2015 bill is the $35,000 cap, that it
will most likely not be applied because there’s a 2008 law
or an act called the Wellstone Domenici Act, limits a cap,
if there’s not a similar cap on physical health benefits.
If your insurance company is still adhering to the cap,
you may want to contact Autism Speaks for help. Virginia
does not unfortunately specifically include ABA for
treatment in the Affordable Care Act guidelines, which is
why it’s not covered in this state, nor does it include
autism within the state definition of mental illness and
that is done on a state-by-state basis. So it always seems that laws beget other laws,
this is certainly the case for behavior analysts.
When the 2011 Autism Insurance Law passed, one of the amendments
that the governor added after the fact was one
that stated that ABA must be provided or supervised by a behavior
an — licensed behavior analyst or assistant. There
was no license. It was necessary for us to go back
in 2012 and pass legislation that provided for a license
under the Board of Medicine. This is relatively easy
to build a path and final regulations are in effect.
As we saw with the map earlier, there are almost 700 or over
700 licensed behavior analysts and licensed assistant behavior
analysts in Virginia.
Now, one of the things that was missing when we created
the license was an Advisory Board. This is a standard
practice in the Board of Medicine and the Board of
Medicine or BOM asked that we go back in 2014 to add an
Advisory Board to help regulate behavior analysts as well
as a student exemption for those that are seeking
certification as BCBA or BCABA. While that was going on
it was becoming apparent that the schools were in
violation of license regulations as teachers and
administrators often do functional behavior assessments
and behavior intervention plans. It was not feasible to
squash interventions based on the science of ABA out of
the schools. So instead we created an exemption. This
exemption is in no way intended to discourage those who
are board-certified and working in public or private
schools from getting their license. It was only intended
to cover those who are not board-certified but may be
using good reinforcement techniques, looking at functions
of behaviors. School employees are not able to practice
behavior analysis outside of the schools unless they are
licensed. Now, the first Advisory Board was in 2014
and meetings are held quarterly, open to the public. The
board regulates that one is a member, a consumer
who is currently receiving ABA services. This is
not the end. The Virginia Autism Project and Autism Speaks
will most likely go back to the legislature in the future
to attempt to remove the age cap completely, as other
states have done. You too can get involved by signing
up with either or both Virginia Autism Project or Autism
Speaks to receive information on advocacy in Virginia
as it happens and those websites are listed here.
I strongly urge you to do this. Laws do not change
themselves and while delegates like Todd Griffin and
senators represent us, they need our help to let them know
that what we need for our families, sometimes changing the
law takes time. Many, many conversations are held with
legislators in order to convince them of the necessity of
the law. You can participate by meeting with legislators
or writing letters to them, and they do listen to us.
Thank you for your patience and for listening to this
lengthy presentation about laws that pertain to autism and
behavior analysis in Virginia and I wanted to leave you
with a list of resources that I’m going to present now.
The first slide is about general resources. As I said
before, the is the website for the body that
credentials behavior analysts, board-certified behavior
analysts. On this website they have documents or
guidelines for health plan coverage of Applied Behavior
Analysis treatment for autism spectrum disorder. You can
search for that just by putting autism in the search box.
Another important website is Virginia, the
Virginia Association for Behavior Analysts, there are lots
of resources on that website as well. Of course, the VCU Autism
Center for excellence, they have technical assistance,
professional development, educational resources and it’s
the educational research center for autism spectrum
disorders. Some legislative resources include The
Virginia General Assembly Legislative Information System.
It’s really easy to use. On this site you can look up
laws that have been passed and the Code of Virginia. If
you put in the word autism it will come up with a bunch of
laws you can read about. Also, the Virginia Board of Medicine, you can see
regulations and look up licensed personnel. Now, I talked
about some advocacy resources, Virginia Autism Project
and Autism Speaks are really the main ones involved in
this. The Virginia Autism Project is a grassroots
statewide coalition of families with children affected
by autism spectrum disorder and they’re working to create
positive change through autism insurance reform. Autism
Speaks has a lot of really great things including the
self-funded employer toolkit which can help you approach
employers about adding benefits to the company health
plan. It’s the place to go if you’re having trouble with
your insurance company covering services. Some
insurance resources include the United Healthcare Children’s
Foundation, and that provides a grant that can cover
insurance co-pays for children up to 16. Also the Virginia Bureau of Insurance, if
your provider is not providing the — is not following the
law, there’s a link for that. You can fill out a complaint
form there. There’s also resources there that can help
you understand more about insurance. Some funding resources,
including, they provide funding for families.
The Arc of Virginia doesn’t provide funding but
they are a super resource for telling you about what
funding sources are available, so I strongly advise you to
contact them if you’re looking for funding. Also The Autism, there are also different chapters for The
Autism Society and they’re a great resource for information
on funding. Finally, the national alliance on mental illness
can provide some information as well.
So if there are any questions, please feel free to
contact me. This is my e-mail address and my phone
number. But I want to thank you very much for your time
and I hope that you’ve found this webinar to be
informative and helpful and I wish the best for you and
your children.

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