Susan Senator

I finished a really good book this morning, and then went to empty the dishwasher, when the thought strayed into my head that I don’t do much these days.  This is the kind of thought I am prone to, a vestige of my former low self-esteem.  Luckily, my new, stronger parts of my brain rose up quickly in my defense.  “What the F?  Do you know what you do with your time?”

Yes, I thought.  These days, and for the past year or so, my main occupation has been planning for Nat’s Post 22.  Every day I read something, talk to someone, meet with someone, email someone and basically move towards a complete synthesis of many streams of information.  The way I do things is through obsession.  That’s the way I love, that’s the way I work, write, exercise, and parent.  I dig in to the deepest layer, below skin, fat, and muscle; below confidence and coping, to the raw and bloody emotions around a subject and I try to feel it, see it, and know it.  Forget warts and all, I want to get to the pathology of things.  That is the only way to live.

That is the only way I can respond to all of the anxiety I have over Nat’s independent adulthood:  by fixating on the entire subject until I know it.  And I am getting there, gaining a fluency in Government Speak, where I can juggle federal programs with state agencies, rules and laws, and also how to find the catch in each kind of support offered.  I write down figures on any scrap of paper lying around — drives Ned crazy that I never get a clean sheet — and I calculate:  “If Nat qualifies for this, we will need to contribute that; if Nat can handle this level of support, we can go for that kind of living situation.”

I got so much figured out.  If I were grading me, I’d get an A- in Post -22.  So what’s the problem?  Aside from the fact that we won’t know if Nat will get state funds for even a part-time caregiver until two months before he turns 22 (yes, it’s true, at least in Massachusetts; the Department of Developmental Services gets its budget from the Legislature, which never passes a budget on time)?  The problem is that I can’t get a core group of families!

My friends who have sons around Nat’s age rarely even return my zealous, fact-filled emails.  They don’t want to deal with it.  They have full-time jobs and other pressures.  They know how to take things more slowly, to have balance in their lives.  But it drives me crazy.  I want someone to nudge, someone to compare notes with, but it has to be someone I’ve known for a while.  Someone who knows Nat and whose kid I know!  This is part of my dream:  to have Nat live with guys he knows and likes!  How great would that be?

Why won’t they sit down and plan with me?  Am I that much of a pain in the ass?

But imagine if the boys could live near us!  Not with us, near us!  A few weeks ago I found a really cute 3-4 bedroom dump of a house right nearby in a great part of my town.  Affordable-ish.  An agency could buy it and fix it up.  My town could be persuaded to provide a Project-Based Section 8 and reduce the rent, saving the rest of their SSI checks for food and part of their caregiver’s salary.  The caregiver could live in the fourth bedroom rent free to supplement.  I could see it.  It was perfect.  I imagined painting it all of Nat’s favorite colors.  I imagined big loud young men stretched out in the high-ceilinged livingroom, rejoicing every time the T went by (the D-line runs right behind the house!) (these young men love trains).  I thought of how they could go on walks with their caregiver (three young men could share one using Adult Foster Care money, if they qualify) to all Nat’s familiar haunts:  Starbucks, KuKoos Cafe, the Library, Peet’s, JP Licks, Booksmith, Panera.  It would be so easy to live there without even having to buy a car for the house because they could walk to Stop&Shop.  They could join ZipCar if they needed wheels.  They could use The Ride. Someday.  You gotta have goals.

I am so obsessed with making this happen for Nat.  This feels like the way I planned before he was born.  I read Consumer Reports to learn about the safest baby equipment.  I learned about de-leading an old house.  I read and read about what labor and delivery are like.  I joined La Leche League so that I could nurse him (I didn’t).  I wondered about cloth vs. disposable diapers.  I did not let myself think about disability or anything like that, but the worries lay inside my heart like clogged arteries waiting to close up.  So I didn’t learn about that.

This is like awaiting the birth of Baby Nat because I am full of hope!  Paradoxically, this process makes me excited.  I feel proud of understanding The System, of the helpful connections I’ve made, of the vision that I now have.  My mind is on all its cylinders.  Nat’s adulthood does not make me sad or scared (most of the time), because I have explored every dark corner of it that I can.  I am leaving very little to chance or the vicissitudes of state budgets.

Yes, yes, of course this could turn out just the way Nat’s babyhood turned out, where nothing matched up with what I had prepared for.  It was like I had studied for the wrong exam.  Autistic babyhood was not covered in any of the bestselling baby books.  I still have a little poisonous hatred for Brazelton and What to Expect the First Year.  Fuck them for not knowing Nat.

Sorry.  Anyway, I need to talk and think about Turning 22 so much that I’m writing this down today.  If I am wrong, I will deal with it, after being knocked on my ass by Nasty Reality.  This is my boy, after all!  My orange-and-yellow Nat!  If I’ve learned anything from the Incredible Horrible Wonderful Clueless First Year of Nat, it’s that as God is my witness, I’ll never be helpless again.

20 years ago, when Nat was a baby, we lived in a terrible little place.  It was not terrible to anyone else but me.  Most people would think it was s cute little “starter home” neighborhood, filled with young families and stable older ones.  But to me it was awful.  All I could see was the ugliness of suburbia:  tiny vinyl-sided Capes and cars parked everywhere and luridly colored plastic toys covering perfect links-green lawns.

Was everything ugly to me because I was sad about my unexpectedly self-contained baby?  He wasn’t silent; he wasn’t placid; he wasn’t difficult; he wasn’t easy.  He was who he was, but he was not whom I had expected.  Something was “off” but to this day I don’t know if that was me or him.  The years stream by and wear down my memories like a river softens rocks; days stand out polished and bright but sometimes become years.  What was what?  I don’t know.  I draw on this very flawed pool of feelings and memories to explain new thoughts I have.

In the bad little neighborhood, the only thing I liked to do was take my baby on long long walks.  The neighborhood seemed endless; you could walk and turn and walk and you’d never leave it.  The little curvy streets ran into one another, forming a large web.  I liked that, because parts of the other streets had slightly prettier houses and gardens.  So I would walk there and show them to Nat.

I would talk to him the entire way.  Not as a Mommy to her Baby, but just me talking to him.  I actually wondered if this was OKAY — the first of a million moments of self-doubt around Nat.  Or should I be talking to him like, “Oh, look Natty!  A dog!  What does a dog say?  Woof, woof!”  And on and on.  But I hated doing that.  I also hated myself for hating that.  But still I just talked to him, Sue to Nat, and lived with my self-hatred.  I talked to him about whatever was on my mind.  I needed that.  Ugly houses, fixing up our house, moving away, mean neighbors, people I was mad at, people I loved.  Things I wanted to do with my life.  I’d look down at the stroller sunshade — maybe it was back, or maybe it covered him — and at his feet sticking out in front of him.  His feet stood at attention — until he inevitably dropped off to sleep.  Then they would collapse, toes inward.  I used to love seeing the difference.  Nat was just so Nat, even then, so definite in his various states.

I didn’t know it at the time, but talking like that established something between Nat and me.  This was to become one of the cornerstones of our relationship.  This sounds corny as I write it, but I feel it is true.  I have always talked to him regularly.  I have also always talked to him teacher-ly, when I have to explain things to him.  Social-storylike, to be sure he understands.  But there is this whole other dimension to our talk that is just plain talking, where I don’t stop and wonder if he gets it.  He listens, either way.

Like just now, I went into the kitchen for more coffee, while Nat sat in the windowseat watching.  “I just love my morning coffee, Nat,” I said quietly, holding the pale green mug carefully in my hand.  “I love this book I’m reading,” I also said to him.  He didn’t answer me; he knew he didn’t have to.  It was just Mom talking to him, telling him what was on her mind, in her heart, or simply right in front of them.  And he would probably just listen until he was tired of it.  And indeed, he is now gone from the windowseat, into his own thing.

I was looking for a place to toss a shovelful of snow that I’d just dug up next to the car when I thought about Nat.  Nat was still at the group home, but we had told him that as soon as the snow stopped and we were dug out, we’d come get him.  I threw the snow right or maybe left — we are really running out of space and the drifts bordering the driveway are about five feet high by now — and I imagined Nat and his brothers shoveling.

We are all really good at shoveling these days.  I pictured handing the shovel to Nat and seeing him push it down and push the snow aside.  No problem. But it used to be.  Such tantrums!  He couldn’t be outside with us.  And if we left him inside, he’d freak out in there, watching us working outside.  The horrible feelings I had, knowing I couldn’t be inside or outside.  There was no place to go, no place to be on this earth because my child was so unhappy and he could not understand what was going on.

Now he shovels snow willingly and competently.  Yet another skill, another feather in Nat’s cap.  How did this come to be?

We made him do it anyway.  We lived through tantrums.  We had shoveling (shopping days, movie outings, parties, holidays, vacations, meals, sleepless nights) days that ended badly.  Nat has been exposed to a lot of activities.  It’s as simple — and difficult — as that.  The more Nat experiences, the more he is able to do.  As soon as we realized that we needed to familiarize Nat with as many things as possible, we started to take him out, make him be around people and go to new places.  It was almost always really, really hard.  We tried a Cape Cod vacation:  terrible.  Each year, not as much.  Stayed with my parents:  it got better.  Switched to the ocean, rather than the bay side and brought boogie boards:  success.  Still difficult, because he walks in circuits and ends up too close to others’ blankets. But still, we enjoy ourselves for a lot of it.  Not all of it, but enough.

Challenger T-ball; failed.  A year later we tried Special Olympics gymnastics: success.  But bumpy success.  Nat sometimes slapped people or had tantrums or spaced out.  We stuck with it.  Or rather, Ned did.  I’m the coward of the two of us.  I find out about stuff and dream things up, but Ned very often ends up following them through. You gotta have at least one parent who doesn’t mind people staring, or an occasional pinch.  I think that even if you are a single parent, you should find a way to have a second person around sometimes.

Vacuuming.  Food shopping.  Parties.  Shoveling.  We took Nat places.  Even for abbreviated visits and outings.  Because even if he had tantrums during the event or activity, it was becoming a part of his repetoire.  Stored data.  Information he could draw on for the next time.  If there was a tiny seed of it already there in his mind, no matter how sharp and horrible that experience had been, it was now lodged there, resting in his gray matter.  And that is the most fertile ground there is.

To my readers:  please feel free to take this letter, copy it, and personalize it with your own thoughts and situations.  Here is a form to email the Governor.  Folks, this is the way to take responsibility for your children’s futures; one email at a time.  You gotta start somewhere!  Thanks for taking this on! –Susan

Dear Governor Patrick,
I have met you a couple of times, at various events and the EOHHS Summit last year.  I am the mom of a 21 year old young man with severe autism (Nat), and the author of 2 autism parenting books. I gave you a copy of one of them at the UMass Summit.

Governor Patrick, I am a huge fan of yours.  I worked for your reelection through my blog (20,000 hits a month) and other networks. I know you believe in helping our most vulnerable citizens, like my son.  So today I am asking you not to allow the proposed cuts to Medicaid that would affect Adult Foster Care and DayHabs.  You must know how terrible the consequences would be if this were to happen.  DDS has already endured cuts in Residential Funding over the last few years, making it extremely difficult for even those eligible for DDS to get 24/7 Res. funding.  Many who don’t quite qualify opt for AFC, piecemeal though the care may be.  Many of these are grateful for the DayHabs offered, for without them they would sit home doing nothing, if they are lucky enough to have homes.  My son is lucky that way, to have both parents healthy and young enough to care for him, and yet as lovely as he is, sometimes in the past his frustrations with this complicated world have made him lash out at us.  This can be scary and dangerous to him and to us.  Nat is not unlike many others on the autism spectrum, who work so hard at connecting and being understood (contrary to the stereotype that they are uncaring of others’ states of minds).  But sometimes he just cannot hold it together.  He is human, after all.

I tell you this to remind you that the Developmentally Disabled *need* the Medicaid supports — many because there have been so many cuts in other departments!  The MassHealth programs have been their lifelines.  Please don’t allow them to be cut.

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.

I am eventually going to de-mystify Turning 22, for me and for anyone else who’s reading.  I’ve been giving a lot of talks this year and maybe it’s my own energy around the subject, but I’m finding that the parents in the audience want to hear about post 22 more than anything else.  My talk has thus begun to shift towards Nat’s later years, towards new topics such as “the dignity of risk,” and “letting my autistic child move out,” and “fostering a connection with my adult autistic son.”  Where my main topics used to be things like “Pre-diagnosis confusion and loneliness,” and “Finding the right school program,” and “Sibling relationships,” I am adding in so much more about Nat as he is now, or as he’s been in the last 5 years.

I’ve had more hope and excitement in the last 5 years than in all of Nat’s childhood years.  That’s because I’ve seen more growth since age 15 or 16 than I used to see.  I will never know why it happened that way:  was it because I was so panicked in the early years that I stressed him out too much?  Or was it that he was not progressing quickly enough that panicked me?  What was real and what was my perception, my filter?

More and more frequently, I feel positive about Nat, counter to what I maybe should be feeling.  I feel good for two reasons:  the Big Picture, and also the fact that I’m conquering my ignorance about Turning-22.

When I look at the Post-22 programs, funding, regulations, and limitations our country and my state offer, I could conceivably be very worried and pessimistic.  But I’m not.  I feel, for the most part, proud that our country has so many programs, as limited and as poorly funded as they are.  We are still a great society, a country that tries to take care of its citizens, though sometimes not as efficiently or as thoroughly as it ought.

The problem, as I see it, is that the information about the programs is buried in many different places, like the way a paranoid old miser hides his money:  some under the mattress, some sewn into his coat hem, some in a safe.  All of the different programs and revenue streams for developmentally disabled adults are shrouded in dusty old office buildings, or ten clicks away from the original link, or embedded in text that would make a 1040 form read like an Archie comic.

This is what I want to talk about, what I do talk about, to anyone in my circle, to anyone who’ll listen.  I don’t want to get all Chicken Little on your ass and scare you about Post 22; rather, I want to make you clear-minded.  The other reason I mentioned about feeling positive about Nat as an autistic adult is that I am beginning to understand The System. I’m getting it.  So now I want to talk about it systematically, so that everyone after me will have steps to follow, but the trouble is, this didn’t happen for me in steps.  It happened in bursts, in gusts of clarity and energy.  Whenever I had the time or attention span to listen to the gurus I’d identified, I listened with my eyes wide open.  I repeated facts and asked the same question over and over again until I understood.  I made myself look stupid and pain-in-the-assish, but I finally get it.

Here’s a few things I know, FYI:

1) Apply for your kid’s SSI as soon as he’s 18.  That way he’ll start receiving a fairly substantial regular check that you can use for his expenses (therapy, gym equipment, tutor, summer camp).  And more importantly, he will be eligible for Medicaid.  BTW, don’t try to apply for SSI online; go in person to your local office.

2) Medicaid is not just an amazing insurance program that pays for a lot of your child’s care that ordinary insurance will not.  Medicaid is also the way to get him a day program post-22.  In Massachusetts and many other states (I believe), Medicaid funds the DayHabs, the 9-3 program your child can go to M-F.  It is up to you to explore various DayHabs to find the best (they are not all alike).  You can start exploring DayHabs whenever you are ready.  You find them through service providers, or sometimes they’re called vendors.  Your Department of Developmental Services (DDS) should have a list.

3) Find out your child’s Priority rating with the DDS, if he is even eligible for this scanty funding.

-In Massachusetts, it is through DDS that your child would receive Residential Support, e.g., the staff to support him while he is not in DayHab.

-Sometimes the DDS has money to fund certain Day Programs that are not DayHabs.  Day Programs might have work as a component, and they are highly desirable, but the funding is scarce.  Still, if you find a Day Program you like, push for it with the DDS.

4) If your child is not DDS eligible but gets Medicaid, see if he can qualify for Adult Foster Care funding (AFC).  This provides a stipend for a live-in caregiver.  Not enough for full-time, but if he lives with another peer with similar needs, perhaps they can pool their AFC money and have enough for one caregiver to share.

5) Apply, in your child’s name, to the Section 8 waiting list.  It is approximately 10 years to wait, but before you know it, that time will pass.  There are some centralized lists that basically all use the one application so you don’t have to apply to hundreds of Housing Authorities (Housing Authorities administer the Section 8 program).  My next book will explain Section 8 but basically, once you have a mobile Section 8 voucher, you can look for Section 8 housing and you only have to pay 30% of your income towards rent.

-Project-based Section 8’s are a good deal.  They are not assigned to a person like the mobile vouchers; they are assigned to a property intended for Section 8 eligible tenants.

6) Network with parents you know who are in the same boat.  Cultivating your child’s community is as important as securing funding.  If you have a committed group, you can accomplish a lot.  Make friends with the parents in your kid’s class; take him to Special Olympics events to find peers for him and parents for you.  Go to support groups to find kindred spirits.  Think of this as if you are an old fashioned parent trying to find the right spouse for your child.  You will be going into business with these people and you need to be able to work with them and depend on them.

I will also talk in later posts/my next book about how to come up with the kind of living arrangement you think your child would like — either with his help, or if he can’t give you that kind of information, how to figure it out for yourself.  Also, how to find people to staff, train, and run the Residence.

But not tonight.  I have a headache, and as Nat told me earlier, “Mommy lie down.”  So, later.