DDA Begins to Turn the Page?

Earlier today, the Maryland Department of Health and Mental Hygiene (DHMH) held a conference call to address questions about why the Developmental Disabilities Administration (DDA) underspent millions in  funds and to describe the steps that the Department is taking in response.  This call covered the same material as the Town Hall meeting that was held on November 30 and was intended for those who were unable to attend that meeting.  

This in itself is a good sign.   Too often, public agencies hold in-person meetings which are difficult to get to and use the meetings to say they are open to public input. Today, with telecommunications so advanced, connecting with broader audiences via conference call, video conference or webinar is relatively easy to do, so a single in-person meeting is no excuse for communicating with the public.   I’m glad that DHMH is figuring this out.

Dr. Joshua Sharfstein, Secretary of DHMH, led the presentation with the good news – the steps DDA will take now that this problem has come to light. 

He said four steps are happening for fiscal year 2012:

Keeping the A First in ABA – Using Antecedents

This is the third of three reports from the 2011 annual meeting of the Maryland Association for Behavior Analysis (MABA).

You won’t get through an introductory presentation about Applied Behavior Analysis without reference to the ABCs – Antecedents, Behaviors, Consequences.  We’re taught early to capture information about these three things to analyze in order to develop a hypothesis about the function of your child’s behavior.  So we get a picture about what happens immediately before and after a behavior occurs.  But then what happens more often that not is we think about how to change the consequences.  How can we change our reactions to a behavior to change how likely it is to occur in the future?

A question we sometimes forget to ask is ‘how can we change the antecedents?’  Can we change the environment to prevent an undesirable behavior from occuring in the first place?  When my daughter was six, she would scream whenever I put a particular saucepan on the stove.  I immediately tried to run a consequence-based program toward changing how she reacted to the saucepan.   And then I slapped myself upside the head.   We had a lot higher priority skills to worry about.   So I banished the saucepan for some months, the tantrums disappeared and we worked on communication skills instead.    When the pan came back out, her aversion to it had disappeared on its own.  Picking the right battles is a big part of manipulating antecedents.

An emphasis on antecedents was a big part of what impressed me about Dr. Gregory Hanley’s MABA presentation about treatment for pediatric sleep disorders. 
 

Impulsive - what does that really mean?

This is the second of three reports from the 2011 annual meeting of the Maryland Association for Behavior Analysis (MABA). 


As higher functioning children with ASD progress and succeed, their diagnosis may be questioned.   In my son’s case, he was diagnosed in Infants and Toddlers days as having Asperger’s Syndrome.   By elementary school, he had responded so well to early intervention that school staff couldn’t see it and believed he had ADHD all along.  ASD, as you may know, is the only disorder where if you improve you never had it in the first place.  

Once we had more thorough-going assessments done in the process of transferring him to a private special needs school, we learned they were both partly right.    He would be most succinctly described by an Asperger’s diagnosis, based on how he presents today.   But he doesn’t meet criteria because he had speech delays before age 3.  So back then, he should have been diagnosed with autism.   He has progressed so far, he now doesn’t meet criteria for autism.  He does meet criteria for ADHD, but it doesn’t begin to explain all his needs.   It takes several pages of specific learning disabilities to paint the rest of the picture.

Since we have experienced how blurry the boundary between Asperger’s/high-functioning autism and ADHD can be, I was very interested when Dr. Leonard Green presented at MABA this year about one factor which may be blurring the line.   Green, a professor of behavioral psychology at Washington University in St. Louis, discussed one of the diagnostic criteria of ADHD – impulsivity. 

What's the Law About Restraint & Seclusion?

This is the first of three reports from the 2011 annual meeting of the Maryland Association for Behavior Analysis (MABA). 

This year’s MABA conference began with a hot topic – the use of restraint and seclusion in schools.    Maureen van Stone, Esq., an attorney who directs Project HEAL at Kennedy Krieger Institute, gave us an update on the state of current law.  The facts presented below come from her.   The opinions are mine.   A fundamental problem, she said, for policies about ‘R/S’ (a new acronym for me) is the lack of definitions in Federal law.   In fact, this is a problem for implementing procedures to reduce problem behavior generally.

The IDEA, which has many great provisions to benefit our kids, fails to define key terms.  Functional Behavior Assessments (FBAs) and Behavior Intervention Plans (BIPs) are required in certain circumstances, but the law is silent about what either of these things means.   It also fails to specify the kinds of professionals that must be involved.  Only the participation of the classroom teacher is required.  So not only is it not required for a behavior analyst to do the FBA, it’s not even required that a school psychologist be involved.   In this ambiguous space, it’s not surprising that interventions are poorly planned and, in the case of R/S, may become dangerous.

Report from Annapolis: Autism Insurance Bill Hearings

     This past Wednesday, March 9, the MD House Health and Government Operations Committee and the Senate Finance Committe held their hearings on the autism insurance bill (SB 759/HB 783).    A fellow autism parent and I went down to show our support.   We got there early, on a mission to deliver POAC's written testimony in support of the bill to the Committee offices 2 hours before hearing time.    On the Senate side, we had the satisfaction of arriving right after the representative from the Chamber of Commerce.   It felt good to cover over their opposing testimony with our supporting one.  There was a thick pile of written testimony, almost all from supportive groups.   To see POAC's submission, go to our website (www.poacofcentralmd.org) and click the Advocacy Resources tab. 
     The first hearing was on the Senate side.   It was a chaotic day in Annapolis, with lots of bills on the slate, so the Finance Committee limited the hearing for our bill to 15 minutes.  This meant only two of our four panels of representatives got to testify.   The Chair really wanted to hear from the families, so parents and siblings carried the hearing with their moving testimony.   There was only one opposing representative, the guy from the Chamber, who cited the costs of the bill.   Our Senate bill sponsor, Sen. Klausmeier, asked him pointedly what he could propose to help with the real problem of autism.   He had nothing to say. 

Next Steps to Help Win Maryland Autism Insurance

The Maryland Coalitition for Autism Insurance Coverage (join it on Facebook here: http://www.facebook.com/home.php#!/group.php?gid=73295166222)  met today by conference call to lay out the most important next steps in the effort to turn our great bill into law.  Here are two important things anyone can do to help:

Attend the Hearings

Our bill is the subject of hearings in both the State Senate Finance Committee and House Health & Government Affairs Committee next Wednesday, March 9.   The committee leaders recognize that families want to come to Annapolis to participate in these hearings, so they scheduled both on the same day and agreed to ensure they happen at different times in the day.  This will give us the maximum chance to be part of the process.   Let's reward this thoughtfulness with a great turnout!

The order of events in each committtee isn't decided until the day of the hearing and both meetings are scheduled to start at 1pm.  So it will be a little tricky knowing when we'll need to be where.   The plan is for everyone to meet in the lobby of the House building before 1pm and get instructions from the committee staff by cell phone telling the group where to go next.   More detailed directions to the lobby and the hearing rooms will come out next week.   I'll post them on the POAC listserv.

Make Sure You've Contacted Your Senator and Delegate

We're hearing some members of the committees have not yet been contacted by their constituents about how important this bill is.    This 'personal touch' is the most important, effective lobbying families can do.   The ideal action is to call your Senator or Delegate first.   You'll probably just get to leave a quick message of support with a staff person, but in this age of mass e-mail bombs, a phone call makes an impact.   Then send an e-mail too, mentioning that you are following-up on your earlier call.    If you don't have time to do both things, please try to one or the other.   The most important thing is that every Senator and Delegate hears from families in their district.   Absolutely key are the committee members (listed at the bottom of this post) so if one of these folks represents you, your call and e-mail are EXTRA important.    If you don't live in a committee member's district (I don't) encourage someone you know who lives there to make the call.

Autism Insurance: An Investment In Maryland's Economic Future

            The Maryland legislature is now considering bills (SB 759, HB 783) that would require comprehensive insurance coverage for autism, including coverage of evidence-based treatments like Applied Behavior Analysis (ABA).   Twenty-three States already have similar laws.  In this environment of budget deficits, it is natural to look at new laws through the lens of costs.   Most people have a sense that the societal cost of autism is high, but few realize how high.

            In 2007, researchers at Harvard conducted a study which found the average lifetime costs to society for each person with autism is nearly $3.2 million (i).  These costs included direct medical costs, non-medical costs like special education and supported employment, and indirect costs like lost productivity.   But it is never wise to immediately accept one study without corroborating evidence.   A separate 2007 study, conducted using a different data source by researchers at Yale, looked only at the direct medical costs and arrived at a figure very consistent with the Harvard team’s result (ii).   The Yale authors noted the importance of covering these costs, like SB 579/HB 783 will.  They state “if public and private insurance programs are not designed so that coverage for people with ASDs is appropriate, access to care for these patients will be compromised.”

            Perhaps even fewer people realize the timing of these costs across a person with autism’s lifespan.   The Harvard researchers write:

Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood.  Adult care, which has the largest lifetime cost of all direct costs, is typically more than 5 times larger than the next 3 largest costs, which include care incurred during childhood. 

Their data show that the large majority of societal spending happens after age 18.   Non-medical and indirect costs make up the lion’s share of that adult spending.  So it is spending like adult employment programs, sheltered living arrangements and the lost wages of unemployed individual with autism and their caregivers that strains and will continue to strain Maryland’s economy.

            Can we do anything about it?   Can comprehensive autism insurance help?   The answers are yes and yes.  By providing access to therapies like ABA to more people with autism earlier in their lives, those individuals can learn the skills and build the competencies they need to become more independent and productive in society.   The investment in intervention more than pays for itself over time. 

           That statement is not wishful thinking.  It is the conclusion of additional cost research.  

Make 2011 the Year for Maryland Autism Insurance

Great news out of Annapolis this week.   A bill has been introduced in the State Senate to require comprehensive insurance coverage  for people with autism.  If made law, this bill, S.B. 759, would expand coverage beyond the existing requirement for insurers to cover speech-language pathology, physical therapy and occupation therapy for their members with autism.    The new coverage would include behavioral health treatments like Applied Behavior Analysis (ABA) and leave room for coverage of other evidence-based treatments.   Few treatments have an evidence basis on par with ABA, but it is valuable that the bill leaves room for future advancements in the science of autism intervention.

It's exciting that the new bill specifies coverage for services overseen by Board Certified Behavior Analysts (BCBA) and delivered by paraprofessionals.    That model, tutors for home programs who are college students trained by a BCBA, is what has worked for many of us.  Additional great news is that the bill would cover "devices that are necessary to develop, maintain, or restore, to the maximum extent practicable, the functioning of an individual."   This means that those of us with non-verbal children could get help with  augmentative and alternative communication devices.

Full text of the bill is available here: http://mlis.state.md.us/2011rs/billfile/sb0759.htm

A similar bill is expected soon in the House also.   Please contact the Senator and Delegate representing your district and let them know the positive impact this bill would have on your family and other families you know in Maryland.    Hearings on the bill are expected in March, so please turn out in Annapolis to support the bill then too.

If your Senator or Delegate is hesitant about the bill, it may be because of cost concerns in this difficult economy.   Note for them that 22 other States already have similar laws.  The independent cost estimates that have been performed in  these States have shown the costs are reasonable.  Surely Maryland, the wealthiest State in the nation, can afford to do what 22 other States have.    More importantly, we can't afford not to do it.   The savings that result from helping people with autism early, and enabling them to be less dependent on public services over time, far outweigh the costs.    There are a couple published papers demonstrating this.   I'll be posting about that research in the next few weeks. 

Wil Gehne

Manding Comes First -- Naturally

Back on December 2 and 3, 2010, the Maryland Association for Behavior Analysis (MABA) held its annual conference.   It was excellent, possibly the best in the years I have been going.   I walked away very excited by all I had learned.   I also walked away with a list of things I planned to post about ... and then I got sick for weeks.   So please excuse the time delay as I start reporting on the sessions now.

The first day was a workshop by Mark Sundberg, Ph.D, BCBA on "Implementing Intervention Programs Based on the VB-MAPP Assessment."   There was more value in this workshop than I can pass on here, so luckily many of the materials are posted on Dr. Sundberg's website:  http://www.marksundberg.com/downloads.htm   One point that particularly struck me was his discussion of typical language development and manding.

I have understood for some time several good reasons why teaching manding, or in common terms requesting, is the starting point for effective autism intervention.   It comes first because it reinforces the power and value of communicating -- speaking, signing or augmentative communication can get the child what they want.    It comes first because it makes learning fun.  It makes the teacher the source of all good things and a person the child wants to be around.

But Sundberg suggested an even more basic reason -- it comes first naturally.    That is, it comes first in developmental sequence.   When developing the VB-MAPP, Sundberg was very focused on ensuring it followed proper developmental sequence because failure to follow that sequence had been a weakness of the earlier ABLLS assessment.    He consulted many lists of developmental milestones, like this one: http://www.cdc.gov/ncbddd/actearly/milestones/index.html

He noticed that as early as 3 months there were milestones like this one:  "enjoys playing with other people and may cry when playing stops."   What's the function served by that cry?   A mand for more playing.    Similarly, he noted that around this same time, very early, babies develop differential cries for pain vs. hunger vs. wetness, etc.   These cries are quickly interpreted and reinforced by new parents as the child's first repertoire of mands.   The child knows how to request different things.

Motivation drives the earliest movements toward communication.  So where should you start when your child is developmentally delayed?   At the start of the developmental sequence.  Makes sense.