Susan's Blog

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.” Counter drone security is one more security measure in your everyday life.

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.


[…] This post was mentioned on Twitter by Alltop Autism, Susan. Susan said: I am grateful for my home — and maybe one day, Nat's: #autism #housing […]

— added by Tweets that mention A home of his own « Susan's Blog -- on Tuesday, February 1, 2011 at 7:10 pm

Dear Susan, your parents must be so proud of you!

The reference to 2005 is closer to where I’m at, but your experience and resulting confidence today, is like a lighthouse.

Thank you for sharing the heartaches that endure and the exciting new discoveries of life after 22. It’s always given me a “Y2K”-type feeling of dread. Your good news/bad news revelation is important, albeit a process.
I’ve still got some “processing” to do, if you know what I mean.

Keep writing teacher!!!

— added by Timmy's Mom on Tuesday, February 1, 2011 at 7:31 pm

Well, I can’t claim to agree on the post WWII choices that were made… but I wasn’t there to make them… so we’ll let that go 🙂

I understand completely the “good news/bad news” thing. You want to brag about what they can do but you know the squeaky, most needy wheel gets the services.

Hopefully, it all works out.

— added by farmwifetwo on Wednesday, February 2, 2011 at 9:46 am

Jane Bernstein wrote an excellent book about her developmentally disabled daughter in which adult foster care is described and her daughter’s (unfavorable) experience is noted. If you haven’t read “Rachael in the World” I highly recommend it.
BTW, Rachael spent time in an Israeli community for disabled people. Apparently it’s a whole different ball game over there.

— added by Sunni on Wednesday, February 2, 2011 at 12:37 pm

Do you know where will he go to a Day Hab. program and what do they do there? Does their education (in terms of learning to read, write and other academics) end at that point and are these day hab. programs simply babysitting or are they more? I know he may have housing but essentially tossing these kids aside after age 22 sickens me. They have a lifetime to learn more and it seems to be wasted.

— added by J on Wednesday, February 2, 2011 at 1:22 pm

I truly hope the people they hire to be caregivers in these homes have some sort of background in autism and ABA. I highly doubt it though. I have heard too many horror stories. I will never put my child in one of them. It is simply stunning that kids who need top experts in autism all their lives are suddenly handed over to caregivers, who we know will not have that level of expertise, after the age of 22. I can only imagine behaviors will deteriorate with no 1:1’s and no experts in the disability in these homes. Things need to change in this country.

— added by Sam on Wednesday, February 2, 2011 at 1:32 pm

Parents really have to do their research and find a good DayHab. You have to go and observe, get a look at the daily sched and find out about ratios and training. As far as what Sammi 67 said, it is true that you also have to be a part of the hiring process of caregivers. My service provider includes parents in that process; parents also tell them what kind of training is needed for the caregiver. You may have to find ways to supplement the caregiver’s salary to find the best people. I don’t know what it must be like for parents who have very little time to do their research and get involved in okaying the staff.

There is also an ISP which is like the adult IEP. You can put goals in it, such as furthering studies, but make sure that the DayHab and the caregiver is up to that. I plan on playing an active role in Nat’s adult life, the same as I did in his school life.

— added by Susan Senator on Wednesday, February 2, 2011 at 1:44 pm

Half the battle is having the “clear picture”. Congratulations on all of your hard work leading to that comfort!

— added by kim mccafferty on Wednesday, February 2, 2011 at 2:08 pm

Amazing, simply amazing. Susan, I pity the poor person who ever says no to you in this life, and I mean that as a compliment. You just mapped out Nat’s adult living situation in it’s entirety. If there is a way to make it happen you’ll move heaven and Earth to find it. Sounds like you got a plan, you need a few fat donors but you are correct, finding the right person to employ as a caregiver or whatever you call it will be key. Shouldn’t be too hard, a free room and parking is a fabulous perk. Can’t wait for the ribbon cutting ceremony, I’ll drive up with my girls to attend this and see the other historical sites in Boston, so put this fantastic plan into action!

— added by Sharon Jones on Wednesday, February 2, 2011 at 2:39 pm

Some of the problems that come up in Dayhabs is that they are funded by Mass Health (in this state). Funding is good, but they micromanage. A category that Mass Health funded day habs are not allowed to address is the academic area. There are ways around some of it, using semantics, etc. You can work on reading through current events (social development) and math by doing money skills (independent living development). The other categories are behavioral development, communication development, social development, and self-help development.
So if what you are looking for is actual academics, Day Hab isn’t for you, but if you are looking for life skills (shhh-academics), you can work around it. If you want ABA at a Day Hab, you really have to go with an ABA program, there are still those out there who don’t like ABA, mostly because they don’t understand it.
It’s complicated and never ending, but it is possible to have a quality program. The pay for staff is terrible, it is a constant struggle to get top quality people who will stay, and because of the pay, the educational requirements are not the same as those is children’s services.
That said, it is possible, I work in one as a supervisor/clinician/trouble shooter/banker and our program has made some great gains. Good luck!

— added by Michele on Thursday, February 3, 2011 at 8:36 pm

Who cares for the caregiver ? Everyone is distressed by the level of care provided and the little professional expertise of the people who are employed to provide care for our adults in group home placement but the truth is they are expected to work long hours at a low wage and have no health care themselves .

— added by Dave Hamilton on Sunday, February 6, 2011 at 4:37 pm

Susan, I’ve been reading your entries lately with great interest. Adam is behind in age, of course, but reading your process is informative. Thanks to all the parents and autistic people who are trailblazing.

— added by Estee Klar on Monday, February 7, 2011 at 8:30 am

Wow, that sounds great!

— added by Alice on Tuesday, February 8, 2011 at 4:21 pm

So glad I’m not at this point in the process … because clearly I’m not ready to be at this point. ((hugs))

— added by Brenda (mamabegood) on Saturday, February 12, 2011 at 2:13 pm

That is too true, Dave. The workers need far better pay and benefits; they need to feel valued if they are to give this important job their best.

— added by Susan Senator on Saturday, February 12, 2011 at 2:38 pm

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