Susan Senator

There is something you don’t think about when you are an activist for a cause:  it is so boring.  Just when you think you have won — pyrhhically of course — you think you can rest your sword for a moment, and then pop! there’s another head on the Hydra.  You gotta get up and slay that damned thing again.  The problem with this metaphor is that it is not a satisfying action like a real head wallop would be; there’s no blood, no green slime.  No, my Hydra is something as amorphous as a statement drafted by a group proposing something stupid.  In this case, the Executive Office of Health and Human Services (EOHHS) in Massachusetts has proposed making cuts to Medicaid-funded initiatives.  The targets?  Adults with developmental disabilities.

Are you jumping up from your seat, hand on your sword, yelling”Let me at ’em!  Show me the monsters who would take funding away from people who already have so little support to count on!  This won’t happen because it is so obviously wrong!”

You go looking for the monsters and you can’t find them.  That’s because it is a group of people you normally trust, like Ann Hartstein, Secretary of Elder Affairs, Jean McGuire, EOHHS Assistant Secretary of Disability Services and Policy, Rachel Richards, Director of the MassHealth Office of Long Term Care and Elin Howe, DDS Commissioner.  I’ve met some of these people face-to-face at dinners and conferences, along with the Governor.  They are good people.  They are in this field for a reason, or at least they were:  to improve the lives of those in need in the Commonwealth of Massachusetts.  I truly believe that.

But — they are making a big mistake, and they are dealing our kids a heavy blow with this new news.  According to the ADDP (Assoc. of Dev. Disability Providers) and the ARC of Massachusetts, the Hydra head takes the shape of cuts to Medicaid:

“[The above EOHHS leaders] met yesterday with representatives of elder and disability services community.  The meeting titled “Secretary’s Review” was held to announce cuts in long-term care spending in MassHealth.

Specifically, reductions subject to hearings scheduled in late February and planned for March 15 include:
Day Habilitation        3.7%             Day Hab
Adult Foster Care      6.2%            AFC
Adult Day Health       7.5%            ADH

The cuts would be implemented in the last quarter (April-June) of Fiscal Year 2011 and then be carried into 2012.  The total cuts which are for FY’11 followed by FY’12 include:

Day Hab-       $1.3 M & $5 M (M=Million)
AFC-             $1 M & 4 M
ADH              800,000 & 3.3 M

EOHHS also plans a subsequent reduction in group adult foster care ($1.25M & $5 M).  Director Richards noted that administrative burden reductions would accompany the cuts and it is hoped that this will ease the financial impact. “

There you have it.  Our Executive branch, fresh from re-election, has targeted the one remaining ace-in-the-hole of Residential Support for the Post-22 Developmentally Disabled crowd.  The cuts will affect nearly ALL post-22 on the spectrum who need a day program because they’re not working, who need living support…

Okay, plain English:  this likely means your adult kid .  Because we all know that getting funding for residential support from DDS was difficult to get in the first place:  DDS funds are IQ based, many many on the Autism Spectrum would not have gotten DDS anyway…but they would still need support, right?  So where would they go?  They probably would have tried for the Medicaid-funded programs like Adult Foster Care (AFC) and DayHabs (which are not run out of the DDS budget).  WELL, NOW THESE ARE GOING TO BE CUT!!!

And as for those like Nat, more deeply involved with their autism, we had hoped that he could possibly get DDS residential funding and would not have to go for the now-to-be-cut Adult Foster Care.  But guess what?  My friend Cathy Boyle. founder of Autism Housing Pathways, did some figuring, using data from the EOHHS site, and here’s what she came up with:

“DDS only serves those with IQ of 70 or below (on average, 41% of those with ASD)

527 with ASD between 18-21 in 2008/2009

Average of 132 (527 divided by 4) will turn 22 each year (probably a low number, as it assumes the 2008-2009 numbers will not increase in subsequent years

****Implies 78 22 year olds with ASD (59%) are *not* DDS eligible each year****

From FY08-FY11, the DDS Central Middlesex Area provided 24 hour residential to an average of 4 individuals turning 22 per year; multiplying this by 23 area offices implies an average of 92 people turning 22 per year who receive residential services, or 15% of those turning 22 served by DDS

Implies ONLY 8 of the 54 with autism served by DDS will receive 24 hour residential!!!!!!!!!”

HERE’S THE PUNCHLINE:  So what would the remaining 22 year olds with ASD each year do for residential support??  They would turn to Medicaid-funded programs, that are now to be cut.

Here is what you have to do when the monster rears yet another ugly head:  you have to go to hearings.  Your testimony is your sword.  The Hydra is invisible; it is no one ugly person, no one horrible committee!  This enemy is not “all politicians” nor is it “evil bureaucrats.”  You can’t really put your finger on its slimy hide.  The way you fight it is with long, tiresome treatises like this blog post.  You write letters to the editor.  You call Commissioner Howe, or Governor Patrick. You call your own Legislator.  You go to the hearing and you try to give some kind of statement, known as testimony.  You can even write it up and hand it in.

Hearings are scheduled on the following dates for these programs:
AFC              Boston on February 22
Day hab        Shrewsbury on February 23
ADH              Boston on February 24

Try to go.  It is mind-numbing, inconvenient, boring, tiring.  It is anticlimactic.  Nothing gets decided then and there.  You go downtown, you sit, you listen, you help fatten the crowd.  Maybe you say something in a querulous voice.  You go home with a headache.  You hear a few weeks later that they are not going to make the cuts as bad as they said.  You exhale, and go on with your life, making plans for your adult child.

It’s boring and kind of ugly and shades gray and full of red tape.  But it will eat up all or most of his adult supports.  And it attacks when you least expect it, and when it’s through you will have next to nothing for him but your own home, your child’s bedroom — if you even have that.