Medicare Supplement Coverage for People with Autism

I thought my mother in law had shared many of the details of Bil's expenses with us but we found out this weekend that was not true.

We were helping her organize some bills when when we saw a bill for Bil for $338.  It was for Bil's Medicare Supplemental coverage, she explained.  Although he is was accepted for NY Medicaid a handful of years ago, his Medicaid Service Coordinator strongly recommended he keep this coverage.

It's $338 a year, we asked.

No, she responded.  This is his premium per month.  Then she explained that it was difficult to get him this coverage.  It had started out cheap several years ago and has gotten more and more expensive.  This past open enrollment period, she had looked at other options.  Many insurance companies won't take Bil because he is under 65.  The bill we saw was for the cheapest company.

$338 a month.  For someone who works in a sheltered workshop part time.  I'm not even sure he brings home that much money.

How can he afford it?  But, mother in law said, he needs this coverage.

She kept calling it "part D" coverage.  She couldn't tell me exactly what coverage he has.

$338 a month.

I wish she was more open about this kind of thing.  When we started to ask more questions, that wall came up; she accused us of questioning her judgement.  We were doing no such thing.  How are we supposed to take care of Bil's affairs when she no longer can, if she isn't forthcoming about his financial affairs.

How many surprises are we going to have when we take over?

Supporting the Sibling Support Project Through Your Holiday Shopping

I don't usually do plugs but this one is important if you do shopping on Amazon.com.

To quote from the Sibling Support Project, something I wish my husband would use for support (but that's another story) because it is a worthy organization:

"GET THE SAME GREAT DEALS YOU ALWAYS GET AT AMAZON.COM WHILE SUPPORTING THE WORK OF THE SIBLING SUPPORT PROJECT!  VISIT THE SIBLING SUPPORT PROJECT'S AMAZON ASSOCIATE STORE at" this link.

If you use this link you will pay the same price but the Sibling Support Project will get a portion of the $ of your purchase.

The Sibling Support project provides support through a Yahoo Group, Facebook, and various other opportunities for adult siblings of people with autism and other developmental disabilities, mental disabilities or health issues.  They have members from all over the world.  It's moderator, Don Meyer, is a tireless advocate for siblings.  They also work, through slightly different channels, to address the needs of siblings who are not yet adults.


Please consider doing your Amazon shopping through the above link.

Thanksgiving and the Annual Paperwork

My husband and I took an exercise walk today.  It was a "bonus" day here in upstate NY; the sun shining.  I was actually able to take off my coat.  A chance to, sort of, soak in the Vitamin D and try to plan out the Thanksgiving weekend.

And, to think and talk about our future.  And our future with Bil, and trying to get things more "started" now to prepare for that future.  I'm grateful we have this chance to prepare, and I don't want to waste any  more time.  I've had a couple of physical "surprises" in the past year and I know how quickly things can change.

We are not going to visit Bil and my mother in law for Thanksgving, due to circumstances up here.  But, in a way, that is good. When we visit for the holidays things we need to keep track of vanish in the holiday bustle.  I think, coming over the weekend, will work better.

Will Bil miss us not being there?  I'm not sure.  I think it may bother him a little because we are almost always there for Thanksgiving, at least in the past few years. (My husband's job, prior to 1999, required him to work many Thanksgivings.  So we would go down another time.  Sort of like what we are doing this year.) But I know one thing I would really like us to focus on when we do go down.

When my mil visited last weekend, she told me about how hard it was to do Bil's annual Medicaid review.  Despite knowing Medicaid will want Bil's financial statements, she keeps throwing them out because she is so tidy.  So then she has to run to the bank and pay unreasonable fees to get the paperwork.  While she was at it, she discovered that because Bil didn't have direct deposit of his SSDI checks, that the bank was charging $6. a month to deposit them.  Lovely!  So at least she got the paperwork filled out for direct deposit.

Why hadn't the bank ever brought this up with her?  Or the Medicaid Service Coordinator?  I wonder how many other little things can be done to make life easier.

Bil's Medicaid Service coordinator helped her with the actual filling out.  But she told me that all the running around had her totally exhausted.  Yet, when we have brought up trying to get some kind of guardianship, or representative payee, or other role for ourselves we are seen as meddling.  She never even asked us to help. (I know it is hard being 150 miles away but after she can no longer have an active role-we are still going to be 150 miles away.)  And if we ask the Medicaid Service Coordinator for any kind of information whatsoever the MSC runs right to my mother in law.  Do we, as other family members, not rate?

I've said it before:  I'm thankful my mother in law wants to continue to care for Bil, to her last dying breath.  But why can't she see that if we step in, or want to step in, that we are not saying she is worthless, or incompetent, or anything like that.  What does she think will happen if she suddenly passes on?  Doesn't she see that by not letting us participate more, she hurts Bil?  And us?

Sigh.

.

Bil and the Magazine

I don't know that I handled this correctly - I am still mulling it over.

Last month, when we visited my mother in law and Bil, my husband, mother-in-law and I were sitting in the living room.  Mil and husband were watching TV and I was paging through the TV guide magazine.  It is Bil's magazine-he pays the subscription - but it is mainly my mother in law who uses the magazines.  I don't get TV Guide at home and I like paging through them.

At one point I got interested in what was on TV and was watching TV with the TV guide in my lap.  For some reason, Bil came upstairs from where he lives, which is in a room in the finished basement/recreation area.  He usually doesn't come up unless he hears dinner being ready.  With his supersonic hearing, he always arrives exactly as dinner is being served.   Eats and leaves, and then comes back exactly in time for dessert.  Otherwise he never wants to socialize.

So I don't know why he came up, and picked the TV guide right out of my lap, looked at it for about a second, put it back, and left the room.

Was it because he wanted the TV Guide but didn't want to ask me for it? (meaning he would have to engage in social interaction).  But obviously, he did not realize that reaching into someone's lap, especially a someone of the opposite sex, is a no-no.

I didn't say anything.  I was a bit stunned (this was a first time behavior on Bil's part) and didn't react fast enough.

If it ever happens again though - I will have a response ready.

Living With Us Again?

I blogged several days ago about Bil deciding he wanted to sleep here on his last visit over the weekend.  My mother in law was sure he would not, and would not want to be away from her....but he was OK with it.  Although I don't know about next time, because he didn't sleep very well.

I wish I could remember the comment my mother in law made, something about Bil practicing for when she was "no longer around".  In other words, Bil was practicing sleeping here for when he would be living here permanently.  This is another topic my mother in law has a total blind spot about.  For a number of reasons we truly do not think that Bil living with us would be the best thing after she can no longer take care of him.  But I digress (although I do need to blog more about that.)

I have realized for a long time that there is some kind of, dare I call it, symbiotic relationship between Bil and his mother.  When an opening in supported housing opened up some 3 years ago, she refused to sign the papers. All of her other children pleaded with her, her Medicaid Service Coordinator pleaded with her, but no go.  I think that Bil could have been eased into it with some kind of transitional plan, but my husband and I didn't have the knowledge to really craft something like that.  I have to admit, working with people is not my strong suit.  I tend to be very introverted.  Be it as it may, she thought Bil wouldn't want to sleep away from her and guess what he did.

It's funny she thought that, because he has been away from her several times, when she has traveled.  She hasn't traveled a lot in her life because her late husband hated to sleep in a strange place.  In fact, they vacationed away from home (more than overnight, I mean) a total of three times that I can think of in nearly 40 years of marriage.

And, in the same breath, she announces she may go to California sometime next year for a couple of weeks, if one of her nephews travels out there to visit his son.  Again, Bil would stay up here.  So why was she making a comment about Bil practicing for when she was gone?  I wonder if she is thinking a lot about her mortality for whatever reason.  I do that enough and I am 25 years younger than she is!

Anyway, my brother in law's wife (Bil normally stays with them) was glad in a way that Bil stayed with us.  She would like Bil to stay with us part of the time if Mil goes to California.  Last time, my husband spent a lot of time with Bil although he slept every night at his brother's house.  I think that would be a good thing for Bil.  Visit and stay, yes.

But live in our house?  No.

Trader Joe's and Bil's Shopping

I recently read a post about some girlfriends, including a mother of a child with autism, shopping at a Trader Joes on the West Side of Manhattan.  It was so funny (in a way) because when we visit my mother in law's it is almost a requirement that we visit the Trader Joes about 1/2 hours from her-after all, we don't have a Trader Joes.

This same woman talked about the nearby Fairway, another foodie must-visit:  and now there is a Fairway a bit more than a 1/2 hour drive from my mother in law, too. Alas, in different directions from the Trader Joes.

I must have a soulmate somewhere on the west side of Manhattan.

This made me think about Bil, though, and his love of getting out and about and visiting food stores.

When we visit, Bil sometimes is just waiting for us to go to a mall or a food store, just so he can come with us.  At the mall near my mother in law's house we used to be able to let him to go off on his own, as long as we gave him a meet up spot and time.  "Meet us in front of Sears in exactly one hour" and there he would be.  And woe be upon us if we weren't there.  His prime destination was CVS, where he would usually buy some kind of chocolate.

But that mall is only a ghost of what it used to be, and it no longer has a CVS.  And Wal-Mart has come to town, and that is Bil's new favorite place.

But you know what else Bil likes?  Trader Joes.

We've taken him a couple of times (with my mother in law) when we have visited cemeteries on Memorial Day.  Bil loves Trader Joes.  Why?  Their selection of chocolate.  Because Bil is a confirmed chocaholic, much to my mother in law's horror.  Bil has....well, let's just say chocolate is not good for him.  But he does get his chocolate.

And who knows, he would probably love Fairway, too.  Although, probably not the one on the West Side.

Try to bring Bil into Manhattan?  Hmmm.....don't know if I am quite up to it.

The Problem Solving Side of Bil

Tonight I saw a different side of Bil.

Only one time when my mother in law was visiting up here (which she does usually just once a year) Bil has stayed with us rather than  his other brother.   His other brother and his wife have a larger house, with a pool, and had a guest bedroom.  Whereas, once we got rid of our sleeper sofa, we didn't have a comfy guest bedroom area.  But the one time we did have a sleeper and Bil stayed with us, he had a bad asthma attack. After that, he didn't want to stay with us anymore.

Until this last trip.  In fact, Bil is sleeping downstairs right now on, of all things, a Coleman inflatable bed.  At least, I hope he is sleeping.  In the meantime, my sister in law is sleeping upstairs in what used to be our son's room.

My mother in law didn't think he would do it.  Didn't think Bil would be comfortable sleeping several miles from her.  Didn't think he would say "yes" because of the memories of that asthma attack, which I think came about 15 years ago.   But she spoke to him, and he accepted our invitation.  However, it turned out it was because of something that had happened earlier this year.

Earlier this year I blogged about my mother in law and Bil staying over as houseguests (along with my sister in law) at this same brother's lakeside cottage about an hour away from here.  Turns out Bil was very unhappy there, because he didn't have his own room. So he hatched a little scheme, to have someone drive him back here the next time the family stays over (he's already anticipating a visit to the lake cottage next year) and he would sleep with us bac in town.  (There isn't enough room there for everyone at the cottage, so we did not sleep over.) Turns out he jumped on this invite as a kind of "dry run" to make sure he would be happy doing this.

Who says people with autism don't try to problem solve in their own way.

Housing Options

Back around 2001 my husband and I attended a seminar on housing by someone who worked for what was then called OMRDD.  What we found out was that housing options for developmentally disabled are confusing, wrapped in government red tape, and had lots of long waiting lists.

Things haven't changed.  The person who did the seminar very kindly had dinner with me (I wasn't able to come to the presentation) and some other family members.  He is retired now, and was a consultant for a while, but I have lost his name (and card) in the mists of time.

When my young adult son moved into a mobile home, I visited him at his new trailer park.  His trailer, although old, is pretty nice.  And I said to myself, "with the right supports, I wonder if this might be an option for Bil one day."

Bil's Medicaid Service Coordinator doesn't feel Bil could ever live independently.  However, she feels he would be a good candidate for some kind of supported housing situation, with perhaps one or two other "roommates".  I am not sure a complete evaluation has ever been made regarding his life skills.  We've also been trying for about three years to get Bil a service provider under NY's Residential Habilitation Program (Res Hab) but no one seems wiling to work with a 50 plus year old man.  I'm sure that is combined with the relatively low wages for such a position compared to the cost of living in Putnam County.

But thinking of the mobile home, that would probably only be an option if we moved Bil up here.  And that may not be the best thing to do (once my mother in  law can no longer care for him, that is-because as long as she can she is going to want him at home.) why does it seem governments exist only to provide red tape, not to actually help people like my mother in law?  And Bil?

Voting and Bil

What better day than Election Day to talk about voting and people with autism.

Bil voted for the first time...let's see, it was two years ago, for President. (keep in mind that he is in his 50's). My mother in law has very definite political views and, when she isn't watching the food network, has a network on famous for its political programming. So that is what Bil is exposed to on a daily basis.  Sometimes I am not sure what he is cognitively capable of (he does have a below "normal" IQ, but IQ tests don't test everything) but I can tell you he has picked up on this political programming.  He has definite political views - he, of course, does not discuss anything.  But, in the middle of a totally unrelated conversation he may blurt out something about the President-just as he might blurt out something about the weather or about his other main interest, the NY Mets.  And then, that's it.  If you try to engage him, it's almost impossible.

I don't know who came up with the idea, if it was Bil or if his Medicaid Service Coordinator who urged him to vote but vote he did.  In a way I'm surprised my mother in law never took him to vote but perhaps she assumed that if he didn't ask, it was because he wasn't interested.  At any rate, his MSC was very proud of Bil having voted.

I don't know if he voted today, but will be curious to find out.

The other recent political "interest" I've seen him show was back in July when Bil, my mother in law, my spouse and my sister in law all stayed in a hotel room to attend a wedding.  Around 8 or 8:30 Bil became slightly agitated, seems we didn't have a particular political show on that he enjoys.  We weren't watching any TV at the time-we had just had supper and were all enjoying each other's company.  Since we had rented a suite, knowing Bil would want privacy, we put on the TV in the living room for him and the rest of us retired to the bedroom area so he could watch TV in private.  But this may have simply been a function of Bil seeing this show on every night (I think it is on every weeknight) and, since it was a Friday, it would have been part of the routine.

I guess the moral of the story is:  if someone with autism can vote, we all can vote.  So:  get out there today and vote!