Paying for Autism

A couple of weeks ago, back on July 1st, the new fiscal year began in Maryland, which meant that applications for Low Intensity Support Services opened for funding for FY2014.

By the end of the first day, Southern Maryland was done accepting applications for the year.  Where we live, in Central Maryland, the wife went into a panic when she was warned a week later that applications would shortly be closing for our area due to similar demand.  (She actually drove the forty minutes each way to hand-deliver our application so it would be there before the newly-imposed July 15th deadline.  LISS does not permit applications to be sent by fax or email – they have to be hand-delivered or sent via US Postal Mail.)  And we’ve come to the conclusion that we’re likely not to get any LISS funding for FY2014.

For those who haven’t heard before what LISS is, it is a fund that supplies up to $3000, through the Maryland Developmental Disabilities Administration, for items not covered by insurance to help with the treatment of those with developmental disabilities (not limited to ASD).  For instance, you can use LISS funding to cover music therapy, or adaptive gymnastics, or the purchase of an AAC device.  You can’t just request money, but rather have to present them with an actual invoice, which the funding agencies – who manage the money for the state – pays directly to the providers.  Since it does run out so quickly, it’s always advised that you apply for what you think you’ll need for the full year, and get it in ASAP.  Demand always, always, always outstrips supply.

I can’t say that I’m shocked that it ran out so quickly this year.

The Maryland Autism Waiver currently has 1000 spots on it… and a waiting list of over 4000 beyond that.  This is an increase of 100 spots over last year, which our legislature feels is a major victory.

Maryland allocated $5.2 million for LISS for FY 2014 (or funding for roughly 1734 people).  Maryland allocated $5.1 million last year for FY 2013, by comparison, but the funding didn’t run out anywhere near as quickly.

Now… as I’ve said elsewhere in my blog, I’m very fortunate that my insurance covers a lot.  The Monster can have essentially have two speech therapy sessions a week, and an OT every other without having to get the insurance company to agree to anything else.  In theory, it covers ABA as well (there’s plenty online about how “willing” the California-based insurers have been to follow through on that mandate, though starting this fall, Maryland-based insurers are required to pay for ABA as habilitative care for in-state insured).  LISS has been very useful for those things that insurance can’t do, like the aforementioned adaptive gymnastics.

And fortunately, my salary will let me – in the absence of LISS funding – to continue that gymnastics without too massive of a strain.  There’s a big problem, though.  As I put it to the wife this weekend: for every dollar I have to spend on these kind of services for the Monster, I have to withhold spending two or three, so we can “bank” them for the future to cover the potential for rising costs.  It means cutting back on vacations, evenings out, discretionary purchases, etc.  It means that, while we’d hoped to have money for music therapy this year, that probably’s going on the wayside for the time being… and the possibility of getting money for respite care is less than zero.

(This, of course, doesn’t include the saving for college we’re already doing for the Monster, plus the fund we’ll set up for R later this year.  Or the separate rainy day fund to ensure that we have coverage in case of a “real” emergency, which now clearly needs to grow further.)

We’ve seen an explosion in the numbers of children with developmental disabilities, and no meaningful rise in the aid that our state is giving to families going through this.  I wonder, sometimes, if any of our legislators actually understand in real terms how expensive Autism and other developmental disabilities are… and how expensive it’s going to get as the numbers continue to grow.

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