Susan's Blog

Sunday, February 27, 2011

Back off, Mommy(?)

I can’t seem to get to Nat lately.  It feels kind of blurred and rough around the edges whenever I focus on him.  He is like a big anxious bird, hopping along ahead of me, his new haircut all rumpled like golden fluttery feathers because he never brushes his hair.  Easily startled, like when my dear friend Jody recognized us downtown.  “Hi Nat!  I haven’t seen you in a long time,” she said, so happy to have run into us.  I said, “Nat, say hi to Jody!”

He wrenched his neck up, like a great ostrich lifting his head from the sand, and, eyes stretched wide open, said, “Hi Jo-ey.” The effort to go public — for him, not me — is painfully obvious during phases like this.  Why?

This kind of weekend prompts a great deal of sadness in me when he goes back to the House on these Sunday afternoons.  When I can’t quite connect to Nat, I can’t help but feel like I’ve failed one of the most important goals in my life. People tell me, when they sense I am too overprotective, that I am not him.  But when you have a child who exists in the world in an apparently very different kind of consciousness, or at least a very private space, from others, it is hard to know where his edges are.  It is hard to know when he ends and you begin.

I hate it when people tell me I’ve got to let go.  Even the kind ones say it to me.  F off, all of you, you just don’t know what I know.  All of Nat’s life I have been so afraid of not standing next to him, or these days, behind him, as he walks through the crowded streets.  When they first told me I had to send him off to a preschool, I rebelled inside.  I couldn’t believe that was the thing to do!  Rip a little boy from the comfort of his mommy, a boy who did not like being in new places, around new people?  Why wasn’t the answer something like, “You have to hold him even more!  More hugs!  You’re doing it just right, now you have to do it even more.”

Well, there was no boy who was hugged more than Nat.  This was one Refrigerator who was constantly overheated.  You could have said I was a Furnace Mother, for sure.  But all my hugs weren’t doing any good.  He was still so anxious, overly alert one moment and clouded in cotton another.

I learned, after his success in school, that my instincts are not always right.  That’s the problem with instinct.  It feels right, it comes right from the center of your being:  your gut.  But we are not just gut.  We have minds that inform us.  And outside of our minds, are other people’s minds who might know even more than us. The problem is, that the best course of action is sometimes a bit of both, or 20% one, 80% the other, or 32% one, 68% the other — and so it is nearly impossible to get it right.  We only know by looking backwards, after it’s over.

If I could only get Nat to look backwards, sometimes, and check in with me, rather than blundering ahead.  Checking in is key to connection.  Of course, he is checking in with me, in his own way.  He hears my voice calling him even when I’m almost whispering.  The night that he got lost, I wonder what he was listening for.  My voice was nowhere to be found, and yet he made his way back to the hockey arena from the parking lot, on his own.

One of these days I’m going to have to admit to myself that I am not Nat’s sole bond to the world.  As bouncy and floaty as he is, he seems to be holding on pretty well on his own.

Our Neurotypical Biases

I love feeling like this, on top of my game, enjoying everything I have to do today.  Delighting in my coffee, my cheese, eggs, my workout.  Working on my new novel.

But I’m at the mercy of moods, and generally not circumstances.  There is not much reason why today feels so much better than yesterday — there’s even snow falling today.  I hate the fact that there is this unseen force within me that controls so much of how my day feels.

Mood issues run in my family.  What about Nat.  ?  How would I know?  I suspect that any of Nat’s neurological/emotional fragility comes from me, although many would point to Ned as the origin, because he is such a geek.  Someone just asked me the other day if more Jews have autism than other groups — huh?  I barely knew what to do with that one, any more than when someone tells me that autistic people are more beautiful than everyone else.

For a lot of Nat’s life, I suspected that he could benefit from therapy.  I mean traditional psychotherapy, once a week, connect-and-cry with a paid professional kind of therapy.  But anytime I’ve gone looking for such a person, the Behavioral Bias crops up.  As soon as the professional finds out that Nat is autistic, they want to do behavioral therapy on him.  They want to analyze his behavior. Only once did I find a psychotherapist who treated autistic guys like Nat, but he was put off by my honest admission that Nat sometimes, well, you know, sometimes he would become so upset that he could become aggressive.  Hmmm, said this well-thought-of professional.  Have you ever considered behavioral therapy for him?

But it’s the aggression and anger that made me want to get him psychotherapy!!!  Maybe he just needed to connect with someone who would help show him that he was okay, and that if he wanted to change, he could.

Blah.  Of course Nat has had behavioral therapy.  That’s been his primary mode of learning.  That, and one-to-one connection and persistence.  But I wanted him to have the other kind of therapy, talk therapy which has helped me and so many others so much.  Even though he does not talk much.  Surely that can’t be the issue:  don’t non-verbal people get psychotherapy sometimes?  If they don’t, why not?

Why can’t psychotherapy be considered for someone who is autistic and can’t really speak?  If one is human, and has outbursts or mood swings, then shouldn’t they be offered the same kind of treatment as anyone else, autistic or not?  It’s just like what happens with the autistic folks who have GI issues; so few people thought to check into tummy aches, etc.  Again, the first rule was always to treat anger, outbursts, etc., as behavior issues.

The assumptions we start with make all the difference.  You might be starting with the assumption that a person is autistic and that means 1) he doesn’t experience emotion the way we do; 2) he doesn’t care about others’ states of minds so he can lash out if he wants to; 3) he is working with an inferior/disordered neurology and so he needs us to wrench him into proper shape.  He needs a black-and-white way of dealing with things because he simply does not see gray areas.  Therefore, you must use behavior modification.

But if your assumptions are 1) He doesn’t appear to react the way we do; and 2) that might be because he does not understand enough about human interaction because of his language issues; and that 3) he feels the same things everyone else does, and probably wants the same things, then you might realize that there damned well should be a way that he could have psychotherapy for his outbursts/mood swings.

Basically, if you start from the standpoint that he is just a person, and as mysterious as any other person, with the added difficulty of language barriers, then your mission — to help support him, help him understand you and himself, and then, to connect with him — that task has just become a whole lot easier.

The problem may be as much with the biases of the professionals as with the autistic person himself.

Saturday, February 26, 2011

The Life I Was Supposed To Have

The other day I had a call from the nurse at Nat’s school, asking me where were all the consent forms, the medical forms, the annual updating of Nat’s important info.  I had put that packet into his backpack, but apparently it never got to her.  This is because I did not tell anyone but Nat about that stuff, and so the information was left with him.  I guess I have my fantasies where Nat would actually remember on Monday — where he’d see the packet in his backpack and remember what I said about giving it to his teacher — and fish it out and hand it over.

This didn’t happen; what then went through his head when his hand brushed the packet as he pulled other things out of his backpack?

I will never know what went through his head, or what goes through his head.  I’ll never know what goes through anyone’s head, though.  But somehow with Nat it feels kind of painful.  Not always, just sometimes.  I suppose those wistful, grieving feelings will never quite disappear entirely.  I have to admit — me, the big champion of the Don’t Compare Doctrine — I look at Max and Ben and the entire tangible worlds they’ve created for themselves, quirky though they are, and I feel like, “God damnit, what Nat could have had, too!”  Here Max and now Ben have a few circles of friends, they make their own plans, they have their projects at home:  Ben is designing an adventure game using software called RPG Maker, about a boy wending his way through the Netherworlds, from Hell to Heaven.  It’s partly based on Dante’s Inferno (he’s actually read parts of it, at age 12), and on Celtic folklore (a favorite teacher did a unit on that last year).  He also draws dreamy, moody landscapes with vague threats on the horizon, that he posts on an art forum.  And he plays Little Big Planet II a lot, with Max or various friends.

Max is rendering the game Riven (part of the great Myst game series) into new software that — I think — will make it more 3D than it has been, and will also allow you to actually be in the game.  You can see its progress on this website.  Max also works 30 hours a week for this company, and of course has a serious relationship with Hannah, his girlfriend from high school.  He’s going to go to the Tisch School at NYU in the fall — this is his gap year.

So then there’s Nat.  People ask me, “How’s Nat?”  And I always try to think of what Nat, himself, is up to, rather than tell them about what I’m doing for him.  It is very tough.  I have to shift myself into NatMode, which is where I am released from the standards of the MainWorld, and I enter a realm of suspended judgment, where just about anything goes.  NatMode is comparable to when the boys were babies — I’m not saying Nat is like a baby, though — when the stuff you report on is milestones, rather than expressions of their personalities.  I used to crow about how “Maxie is walking at 10 months!”  Or “Nat first crawled at 7 months!”  Or “Benj is talking already! (but totally on his own terms…)

When people ask me about Nat, I think in blocks of how he spends his day.  There’s work:  Papa Gino’s, making boxes and delivering door coupons in the neighborhoods around the restaurant; serving lunch in his school cafeteria, that kind of thing.  He loves it, I say.  That is true.  When you ask him where he works, he can answer in a snap:  “PaGinos;” and “Make boxes.”  No thinking necessary; the words are right there.

I tell people he loves basketball and knows how to shoot baskets.  He loves the excitement of the crowd at the tournaments.  Gym noise does not bother him.  I tell people he is helpful at both of his homes — laundry, dishwasher, vacuuming — and so well-behaved and centered.  I like using words like “centered” rather than “well-behaved” because I like to get people thinking of him as an adult who is capable of things they may not be.  For instance, I don’t know if I’d describe myself as “centered;” active, yes, but centered?  Not that often.  I am able to focus on the boys, no problem, but most other things in my life take an effort of concentration and discipline.

But there, I guess I have given a list of Nat’s world just as I have given you a list of Max and Ben’s worlds.  Why do I feel differently about those lists?  I’m proud of all three.  I guess it’s just that sometimes, I’d like to see Nat’s list, how it would have compared to Max and Ben’s.  If I spell it out in words, the pride is no different.  The bragging, the crowing, is all there for all three of them.  But what?  What is it that’s different in Nat’s case?  Is it that he isn’t really given a choice in his world?  That everything he does was someone else’s idea.  I don’t know.   But in my quest to fully embrace disability, I see that I still have some work to do in terms of letting go completely the notion that This is Not the Life I Was Supposed To Have.

Tuesday, February 22, 2011

Penny Foolish and Pound Cruel

A new era has begun for me.  All the past years I’ve been going to these state hearings on proposed cuts to special education in Massachusetts.  I’ve been one parent out of many parents, professionals, and students protesting cuts to programs that have never been fully funded to begin with.  But today I testified at a state hearing on Massachusetts’ proposed cuts to the Adult Foster Care program (AFC), the first time I’ve spoken as a parent on Nat’s behalf — for his adulthood.

I’ve written recently about the AFC program, which is funded through MassHealth and Medicaid, about how this program is part of the new movement to keep those with disabilities in their communities and homes, rather than sending them to nursing homes and institutions.  The part AFC plays is that it provides a small stipend to a caregiver (usually a parent, a foster parent, or a hired caregiver) to live in the home of the disabled person 24 hours, 7 days a week.  For a Level I case, someone who needs prompts to do almost anything and who needs supervision at all times (Nat is a Level I), the stipend is about $9,000 a year, which when broken down comes to $2.07 an hour.  This is the program that Massachusetts feels it must make a 6.2% cut to.

Have you ever tried to hire someone for $2.07 an hour?  I couldn’t even get my neighbor’s 5th grader to water my plants for that.  Imagine trying to hire someone professional enough to care for Nat in all his glory for that pittance.  Or, consider that this money would be to substitute for my salary as an adjunct professor.  Or, if I could not care for Nat, then this stipend would be for Ned, currently a software engineer supporting a family of five, who would have to leave his job or reduce his hours.  And we are people who are doing well enough, with savings, etc.  What are the people who work two jobs to survive supposed to do to support their disabled loved ones?

Institutions, you may say.  Well, you would be totally wrong.  Speaker after speaker from different agencies that administer AFC programs — about 120 people filled that room — reported the comparative figures, of nursing home care vs. AFC.  Basically, nursing home and institutional care cost twice as much per person as the AFC program.  Institutions are becoming a thing of the past, a former era of relegating of individuals with disabilities to the margins, the dingy basement rooms, the closets, the attics of the world.

Damnit, I am not going to let that happen to Nat and his friends.  22 years of hard work in school, all those resources and teachers’ energy going into helping him become a person in the world, an individual in his own right, someone who works, who is a team player, and who brightens people’s days with his sunny face.  Someone who, prior to his intensive residential education, was at times so destabilized by his environment that he became violent.  This created an unhealthy home for my family, including Nat, and especially Ben, my youngest.  Imagine growing up, tiny toddler with an out-of-control brother that even your all powerful parents could do nothing about.  What does that do to a person’s view of the world, ability to trust, to manage fear?

What does it do for Nat, who is also a person who deserves to survive in this world when I am gone.  Families with disabled loved ones need support, or they stand to fall apart.  And then who cares for them, who picks up the pieces?  Get a good look at some of the street people you see, wandering around dirty and uncared for, talking to themselves…  what is their story?  What is their diagnosis, do you think?

I told these state officials that parents of 21 year olds like me are terrified of what comes next.  They had a support system in public education, professionals to help and educate, however imperfect it was.  Adult services should not feel like you are on the edge of a terrible precipice.  A program like AFC — as little money as it is — still allows people to continue making progress in their homes or in Nat’s case, with other roommates sharing the one caregiver in an apartment of their own.  I told these folks:  “Don’t do this.  It is penny foolish and pound cruel.”

Friday, February 18, 2011

Gift of God

Nathaniel means “gift of God,” from the Hebrew Natan-El.

About 20 minutes ago I got the call that every mother dreads most:  “We can’t find Nat at this moment.”  I was out with my friend Lisa and I didn’t know what to do first.  I called Ned at home.  He hadn’t heard this.  He got into the car immediately to drive to where the social group had been.

My friend put me into a cab and I called the social group leader back.  “YOU HAVE TO BE FUCKING KIDDING ME”  I screamed.  “Where is he?”  The wine I’d had was going to come right up.  My stomach lurched.  My phone beeped.  My friend was asking what was happening.  I called Ned, and he was on his way.

Where was Nat?  They said that they got distracted for a moment when one of the social group kids got picked up by her dad to go home.  They did a head count and it was only three.  Nat was gone.

I was sick to my stomach, screaming in the cab.   He’s gone.  He’s gone?  What are the chances you can find a young autistic man in a crowded hockey stadium?  He’s gone.  This is the worst thing that could happen to a person.  If someone tells you that autism is the worst thing that could happen to a child, they don’t know anything.  My darling, my Nat.

And the weird thing was, when I dropped him off this evening, the group leader seemed kind of — tentative.  Young.  Nat was doing a wide circuit around him and I yelled out twice, “Nat, stay with the group!”  I looked back to see where Nat was, and he was with the group, so I let him go, but there was a small tiny voice that was wondering… But he’s been doing this for years, don’t be silly, Susan.

My phone rings a few seconds later, “We have Nat.  We have him.  He’s okay.”

“Where was he?  He’s okay?”

“We are not sure where he was but I had checked all the bathrooms and had the entire stadium locked down.  He’s okay.”

She put him on the phone.  “Hi,” he said.  It was my darling’s voice.   God has now given me this gift, twice.

Thursday, February 17, 2011

The Transition Learning Curve

I’ve begun Part II of Nat’s Transition to Adulthood:  the Day Program.  November 15 is right around the corner, so that is my goal date for having his entire Transition setting set up.  He will leave school that day and move out of his school residence soon after.  This is a lot to contend with emotionally and pragmatically, for Nat and for my family.  That’s why I’m writing these blog posts:  to tell all of you out there to get going as early as possible in your research and in your emotional process.  You look at your little guy now and think, “Oh, God, I can’t imagine him grown up.  What will that be like?  What will his peers be like?  Will they be like a bunch of lost souls shuffling around from van to mall everyday?”

I will get to that.  The only lost souls are those who are not feeling happy and purposeful in their lives.  That includes you.  I hope you are not a lost soul.  But more about that later.  I suggest you approach this the way your autistic child approaches learning any new skill:  break it down into baby steps.  Think about your modus operandi, how you operate, how you achieve things, and go with your own model.  Maybe you like to do things methodically, one appointment after another.  Maybe you do things in bursts, like me:  one appointment or maybe ten, and then none for months.  Whatever works.

First you have to learn about who you are dealing with. I would try to understand the key players, the names of the departments and organizations involved. How do you learn this?  You go to a workshop.  Pick one workshop for this year, one Transition to Adulthood workshop.  Write down your questions.  Ask a few of them, but not all.  Keep in mind that as you dip back into this stuff, it will clear up, concept-by-concept.   There are Federal Programs and there are State Programs.  Federal are for everyone, State differ.  Who is your State point person?  Cultivate a relationship with a friendly introduction via email or phone.

Next you learn about the programs themselves, what they offer. SSI, SSDI, Section 8, Developmental Services, DayHab, Residential Supports. Don’t worry yet about how to get into them.  Just learn their function. I tried to figure out all of Section 8 in one fell swoop:  forget that.  These days I’ve been touring centers in the Greater Boston area that offer a program M-F, 9-3.  These are typically Medicaid-funded (Federal $) therapeutic programs, i.e., no employment/earning component.  These are called “DayHabs.”  The centers vary in quality and goals; some do highly individualized curricula and others have more of a general schedule with a choice or two. They go out into the community (it should be much more than malls, and if it is malls, then be sure your guy is learning money skills and dealing-with-the-public skills).  Visit the program.  Tour it and get a good feel for it and the clients it serves.  Are they engaged?  Happy?  Watching TV?  Can you imagine your guy there?

Imagine your guy there:  he is part you, part the child he is now.  So you think about how you would feel there, but not using your deep and complex social knowledge.  Think about what he likes to do, and if you can’t name a concrete activity, (mostly Nat likes to be active, with people but not talking to them), figure out when he is happiest.  Does this place match that?

(Be prepared for developmentally disabled adults.  They are not as good-looking as kids with DDs.  Think about it this way:  no adult is as beautiful as a child.  We age and uglify.  Sorry.  But don’t look at these people as lost souls, broken, pitiful, sad.  An unusual face is just that:  an arrangement of features that you don’t see everyday.  It means nothing.  A voice that speaks in grunts or not at all is still fully human, FULLY human, with an inner life, even if that inner life is pictures swirling around his mind, or beautiful sounds.  I don’t freakin’ know!  I’m just saying, get past what they look like.  It’s just a body.  We can’t all be magazine people.)

Many of these centers (also known as Vendors, or Service Providers) also have Day Programs, which are not DayHab, or therapeutic only.  Day Programs often have a volunteer or employment option, but you need to find a way to pay for it.

Next you find out how to pay for it.  You need to find out if a program is an entitlement, or Medicaid/Federal money, or if it is something you have to push for with your Developmental Services point person (see above).  You need to find out how to set up your savings so that they can help your adult child someday but not get in the way of his funding.  I still don’t really understand this one, but I have a lawyer who does.  You are looking to set up a Special Needs Trust.

About guilt:  try not to go there.  Even if you have resources to support your child, you don’t want to get into a situation of depending solely on that, especially when you are gone.  You have to think of your adult child as an independent adult — that is his right, it is about his dignity.  These programs help him become an independent adult, as much as possible.  We are so lucky that our society attempts to support those who cannot do it all on their own.  We are a society that spends tons on building roads and highways and bridges.  We are a society that subsidizes farmers and to some degree, big corporations with tax breaks.  Everyone gets help and benefits from our government to some degree.  Why shouldn’t your guy?  Why is one considered a handout and having our roads built for us considered a given?  Think about it.  I wish we could all chip in and get along.

I have listed for you the big steps.  You break them down.  Do one thing at a time.  Start a notebook.  Save business cards and telephone numbers.  Build your network.

Above all, give yourself a break, take your time, but still:  do it.

Wednesday, February 16, 2011

Show US The Money

I keep trying to fix everything, but I’m tired.  I’m like that little Dutch boy, plugging my finger into the leaky wall.  As soon as one hole is plugged, another leak springs somewhere else.  I just keep standing there, like an idiot, water all over my shoes.

Even before I knew nothing about Albert Camus’ version of Existentialism, I knew that you were supposed to do this.  Like the good Dr. Rieux in The Plague, who just keeps on trying to heal the doomed and dying of Plagued Paris, we’re all supposed to be good, without thought of the end product.  I was raised that way.  My mom said it was part of being a Jew:  Tikkun Olam, repairing the world.

You probably were raised that way, too, Jewish or not.  Not to be saints or martyrs, who usually died for a cause, who perhaps valued others’ lives more than their own, but rather, to be humans who just kind of work to make something better, with the hope of success, but not really.

Autism parents are often made out to be saints when all we really are are parents.  Tired parents.  When someone says to me, “You do so much,” with admiration in their voice, I fight hard to see it as a compliment.  But I can’t help but think about the double edge of that kind sword:  the implication that Nat is so so so so so hard.  The implication that another parent might not do the same because he is just so _______ blech.  My huge-but -repressed indignation rises up when I get that compliment and wants to say, “Don’t say that!  Don’t even think it!  He’s just Nat!  You would do the same because he is simply your (my) child.  All children are worthy of whatever effort.  That’s just our job as parents.  It’s not saintly, it’s not heavenly-ordained, it’s not beyond the Pale.  It is just plain old human love.  I’m sorry it’s so hard to give me a compliment, though.  I don’t expect this to be clear to everyone.

It’s like they think they have it easier than me.  But how do they know what easy feels like to me?  Some people think I do a million things in a day and they feel exhausted just hearing about my shit.  But that high energy and intensity comes naturally to me.  I find it exhausting to be bored and uninterested.  But having a day ahead of me that consists of 10-mile bike ride, teaching my class, picking up Benj from school, thinking up something interesting to write, feeding us dinner, settling down leaning on Ned on the couch and watching In Treatment while a laundry hums:  that is a good day.

Getting pissed off at something happening in the world of disability is also usually part of a good day for me.  I love the energy of my anger, and harnessing it to write something scathing and to-the-point.  I love calling my fellow travelers to arms.  But sometimes it is just so tiring.  Wave after wave of bad news hits me upside the head, such as the latest:  My beloved Barak’s proposed budget, which contains within it deep cuts to human services and education.  I can only imagine the forces of evil he is up against in Congress, the wealthy who must hold tight to their profligate way of life and who refuse to give anything to a government for the people.  That he would lay out something as heinous as these cuts, well, you shouldn’t know from it. But now you do.

Still, we have to fight it.  It’s not only not good enough, it’s bad.  It’s such a leak that it’s like New Orleans, almost.  So get out your caulk and get ready to yell because they must not cut social programs, human services.  It is the lifeline for people like Nat, who want to live worthwhile lives but will not be able to depend on their families forever, if at all.  Write to your Congressman using this easy link and tell them to find that money somewhere else.

Tuesday, February 1, 2011

A home of his own

When I was growing up, my Mom used to tell me about Israel, and how its existence is utterly necessary, because after the Holocaust — only the latest of centuries of anti-Semitic state-sanctioned slaughter — the Jews would now always have a home.  This Zionist view is what I was raised with, for better or worse.  You may disagree — and I certainly feel the extreme difficulty of the Palestinians’ plight — but that is not the point here.  The point is how I’ve always believed in this kind of security for my people, because of their multi-millenial history of expulsion and wandering. “And that will not happen ever again,” she would say, her voice rough with emotion, “because now the Jews have a home.”

I have the same passion for housing Nat.  I see the history of disability as not completely irrelevant in some ways to the Jews.  For centuries, the intellectually disabled were viewed as lesser beings, as broken, pitiable souls.  They were cast out, or they were forever dependent on their families, even when their parents became old.  They were herded into heartless institutions to live out their blank days.

Along came the Kennedys and the Shrivers, who brought in a new era of Intellectual Disability Awareness.  When I heard the late Eunice Kennedy Shriver speak at the White House on her 85th birthday, she talked about how horrible it used to be, that these lives were wasted, uneducated, pushed aside, locked away.  But she knew, from her sister Rosemary’s early life, that with care and consistent effort, anyone can learn and develop.  Her Special Olympics showed the world that those with Intellectual and Developmental Disabilities were not “retards,” creatures, idiots, incapable of learning and mastery.  Now we have the IDEA, Individuals with Disabilities in Education Act, that requires school systems to educate every child, regardless of disability, race, income.

The education mandate ends at 22, and that is where there is still a gap, a chasm really, because to get to the other side of worthwhile adult life, there are so many things we parents have to learn.  It is like the diagnosis days, only we don’t have the energy we had as younger parents.  But we do have the wisdom and confidence we have gained from all the years of battling school systems, public ignorance, and poor odds.  The key is to hold onto your wiser self and try to learn what is out there for your child, little by little.  Give yourself time.  Hold onto the dream, whatever your vision is for him.  Learn, rest, learn, rest.

As of a week ago, Ned and I committed to a service provider, Advocates, Inc., to put together our housing project for Nat.  I may have already mentioned this, but I feel the need to talk about it again and again.  The more I write it down and talk about it, the better I understand.

On Friday a team of specialists from Advocates came over to assess Nat for eligibility for Adult Foster Care.  This is a lousy name for a very good program.  AFC is federal, the dollars are from Medicaid, and it began as a program to offer in-home assistance to the elderly.  Because of its elderly focus, much of the eligibility centers around physical needs.  This is an example of how our national support systems still have not caught up with the thing that is autism.  Because of how AFC is structured, trying to fit autism into its requirements is like the whole square peg round hole thing that we autism parents are really really used to/sick of.

Still, we are blessed that this country provides such a program for its vulnerable citizens.  The problem is, who the hell knows about AFC???  How do you find out?  I know how I found out.  And now I’m hoping you will know, too.

There are two levels of funding, depending on how much assistance you need.  Level 1 is about how independent you are with the performing Activities of Daily Living (ADLs), such as dressing, bathing, eating — whether you need prompts, whether you even know how to dress, etc.  Also covered are safety issues, behavior issues, attention and communication issues.  Level 2 is about ADLs, too but with the added concern of physical assistance.  If you need actual hands-on assistance dressing, bathing, etc., you could be a Level 2, which is more funding than Level 1.  Nat does not require any physical assistance, but he fits the Level 1 in many ways, and so he is a Level 1.

These days I laugh with yashtikas about the good news and the bad news:  that Nat is so disabled that he needs and qualifies for profound support services; the good news is Nat is so disabled that he qualifies for profound support services!

Not that funny, I know.  Anyway, once we committed to Advocates, the assessment team takes care of the AFC application.  Advocates will also figure out scenarios for Nat in terms of roommates and caregivers, and how we can piece together the funds for these.  Combining the AFC dollars (around $9,000 a year Level 1) with the SSI dollars (around $8400 a year, also a Federal program) and pooling two other roommates’ AFC and SSI, they may be able to support one live-in caregiver salary.  The caregiver goes rent-free as a perk, because likely the salary is not as high as one would want it to be.  But a free room and parking space in a nice urban town near Boston is pretty valuable!  Plus this caregiver would be free from 9-3 when the tenants are at their day programs — Day Habilitations (also Federally funded).  If our town creates a subsidized house (bought by Advocates, who have a lot of equity through the many homes they own throughout the region) using Section 8 money set aside for town Housing Authority projects, then the tenants only have to spend ~30% of their income (SSI check of around $700 a month).  This leaves maybe $5600 a year for everything else.  If the tenants use food stamps for food, then they can put most of the rest of the SSI check towards the caregiver’s salary.  Clearly the salary is the biggest expense.

In a nutshell, three tenants in a subsidized home with $9,000 AFC each, + $5,000 each from SSI leftover = $14,000 x 3 = $42,000.  Of course, 11% of this goes to the service provider’s overhead (training, hiring, oversight, benefits…), and of course not all the $5,000 SSI can go towards salary.

But today as I sit in my cold dining room, safe from the colder storm outdoors, I feel a sense of warmth inside, because we now have help.  We are not alone.  There is someone I trust, and more than that, there is a clear picture in my head of how it will work.  Nat will have a home, his own shelter from the storm, a place for him that is not dependent on my living forever.