Monday, October 31, 2011

Autism and Employment

Today will be a short post as we cope, long distance, with Bil and my mother in law needing to be evacuated out of their home (without power since Saturday afternoon) to a relative's home about an hour and a half from her.  Fortunately, the roads were in good enough condition to permit this.

Bil only works part time, in a sheltered workshop, so getting time off from work for this latest evacuation (they also had to be moved, up here, due to Hurricane Irene in August) isn't a problem.

So it was interesting when I found this article regarding adults with autism and employment.

Bil is working in a sheltered workshop, part time - he is one of the "lucky ones".

How sad.

Sunday, October 30, 2011

Weather - the Sequel

Due to the snowstorm in downstate NY yesterday, conditions are pretty bad in the area my mother in law and Bil live in.   Trees are down everywhere.  Some areas downstate got as much as 19 inches of wet, gloppy snow.  Mil and Bil have been without power for over 24 hours and here we are 150 miles away coping with our own problems.  Fortunately, family a little closer than we are are going to be able to drive down and get them, and take them back home.  So they will be in a safe place with power.  I wouldn't be surprised if it takes upwards of a week for their power to come back on.

We were afraid of this after Irene but, quite honesty, since the flood in our area in early September (which impacted us personally) we haven't been giving it much thought.  We aren't in a position to be able to put her and Bil up either, at least for another couple of weeks.

I hope this isn't a bad sign as far as the winter they are going to be having.

Sometimes when it pours.

Saturday, October 29, 2011

Winter Weather in October

It is as if summer was only a dream.  We are back to winter mil losing power due to storms.  It happens one or two times each winter.  It's not good that the first time is in October this year although...hopefully it will get above freezing there tomorrow.

Along with what may be 3 or 4 million people before this is over, my mother in law and Bil are without power.  I am hoping very much that they get it back sooner than the 5 days it took after Hurricane Irene.  Because this time, it is a matter of heat both for Bil and for my mother in law.

It was good, in a way, that this storm happened.  We've been thinking of our own issues a lot recently (also weather related, ironically) and had not looked into a generator for mil.  I fear it will be too expensive.  But my mother in law can not keep losing power.  And it has to be hard for Bil, too.

Friday, October 28, 2011

Temple Grandin on TV

Within a week after watching a DVD of the Temple Grandin HBO movie, we got to see her on TV once.  And she was to appear on ABC Extreme Makeover-Home Edition tonight, but we didn't find out about it in time.

Still...isn't it strange the way you will read or see a program or movie on something or someone, and suddenly that person (or a place, or an event) will suddenly pop up everywhere.

We saw the 60 Minutes last Sunday on Steve Jobs and to our delight, the show talked about I-Pad apps for people with autism.  I'm not sure Bil would benefit from any of that as he is verbal, but it was interesting to learn about.

Meanwhile, the Extreme Makeover program did a home makeover for an Oregon couple with two childen with autism, and I was able to read a local paper's article on Temple Grandin's visit (which was actually in September.)

One thing I've never checked into is whether Bil knows anything about Temple Grandin, or even if he knows if she exists.  Maybe - with an I-Pad app? we could one day find out what Bil thinks of her.

Wednesday, October 26, 2011

Hundreds Search For Missing Boy with Autism

A walk through a Virginia Civil War battlefield may prove deadly for a missing non-verbal boy with autism.

I hate to feel pessimistic about this, and my heart goes out to this family of a boy who wandered away Sunday during a family walk in the North Anna battlefield.  But the temperatures have gotten down into the 40's.  "Emergency packs" left by searches (with survival equipment) are left unused.

We can not lose hope.  Hundreds of volunteers are searching for him.

But we may well be facing another tragedy of autism.  How many times has something like this happened this year?

Is there a solution?

Tuesday, October 25, 2011

Justice Finally for Mark Lindquist?

It is the sad but sorry truth that people who work with the developmentally disabled, in so many cases, make barely above the minimum wage.  This is one reason why we can not get anyone to work with Bil and haven't been able to despite years of searching.  But people do go into that line of work.  And sometimes things don't work out too well for them.

And then, when an aide tried to save the lives (in vain) of three men with Down Syndrome as the Joplin tornado of earlier this year bore down on them, and suffered severe injuries to the tune of over $2.5 million dollars - his employer's work comp insurance company denied the claim because he hadn't put himself into any more danger than anyone else in the tornado's path!  Even more outrageous, Missouri law allows this.

Thanks to the power of the press, the insurance company has now reversed itself.

The aide was seriously considering selling his house to pay his medical bills.

I do wonder, though, how many other work comp claims have been denied, leaving people who work for the well being of our society's most helpless - bankrupted by work related medical bills.

Thank you, Press, for bringing this outrage to national light.

Sunday, October 23, 2011

Happy Birthday to an Autism Advocate

Happy birthday, Sally.  I don't know which number birthday it is, but I am so glad, after your battle with cancer that you are being given additional opportunities for birthdays.

You have done so much for the autism community in this area.  And now you have to deal with a random force of nature.  In September, Tropical Storm Lee dumped massive amounts of rain on your neighborhood. Flooding resulted.  Your neighborhood, along with several others, are now local synonyms for disaster.

I drove through a couple of blocks of your neighborhood for the first time since the floods today, heading towards a shopping destination.  The exit from the highway has been open for a couple of weeks now but I just didn't want to go there. There is still so much work to be done in your neighborhood, Sally.  There are still porta potties on several street corners, I see..  In one yard, or what used to be a yard I guess, a large tent was sheltering people preparing lunch for the neighborhood.

I think of you and your children living in the middle of all that.

But I also know that you are not prone to self pity, Sally.  What I can hope is that karma, or whatever, will bring "normal" back to you-whatever normal is.  You've done so much for other people, especially the children and young adults of the Southern Tier with autism.  You deserve a very happy birthday.  I hope you got one, and had the time to enjoy it.

Next year HAS to be better!

Saturday, October 22, 2011

The Temple Grandin Movie

I had blogged (it seems like a million years ago but it was only in June) about the Temple Grandin movie made for HBO and how my local library had finally gotten hold of it.

Yes, I did get it out, and yes, I loved it.

Why did I love it?  Well, yes, the actress who played Temple Grandin did an excellent job of portraying her, I felt.  In fact, the entire cast did a wonderful job.  But more than that, it wasn't just a story about autism.  It was a story about a woman pioneer in a male-dominated industry (cattle ranching and the design of equipment related to ranching and slaughtering) and what she had to overcome.  For any woman it would have been daunting.  For Ms. Grandin, it may have approached a miracle (and if I was Temple, I'd be seeing a picture of Jesus walking on water as soon as I read "miracle")

Too late, I realized there was a commentary feature (by Temple herself) available with the film.  I was very pleased to find out that "Hollywood touches" were kept to a minimum, at least according to this review.

A British newspaper has a wonderful interview on Temple and the movie.

As for Bil's mother and Temple's mother (who is still alive and is similar in age to my mother in law?)  That will make a good post for another day.

Friday, October 21, 2011

Autism and Medicaid

While we continue to wait (still no word from Bil's Medicaid Service Coordinator) for word on how we can best attempt to fight Medicaid's decision to no longer pay for one of Bil's medications - a medication that does a lot to improve Bil's life - I want to give a shout out to the blog Autism Policy and Politics.

I was interested in a  recent article about - Medicaid.

Bil lives in New York State.  For what it is worth, his primary care medical doctor does not take Medicaid so his mother must pay for his doctors visits out of pocket.  Fortunately his mother can do this.  One day we may have to.

It is also difficult in the part of New York State we live in for people on Medicaid to get any kind of dental care.

Private insurance?  How does someone whose sole income is SSDI, and a part time job in a sheltered workshop, pay for private insurance?

So this is the situation that Bil, and many others with developmental disabilities, find themselves in.

I was disappointed when I once again did not hear from the MSC today.  I think I will drop the MSC an email this weekend and touch base. 

Tuesday, October 18, 2011

Almost a Year Later -The Saga Continues Part IV

Back in October of last year I wrote the following post, which I have somewhat edited.

What I wrote then is in italics, the update in "regular" font.

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.

Things have changed-for the worse.  OMRDD may have changed its name but it hasn't changed its stripes.

Due to budget cuts, Bil's ARC can not build any new housing. We are now told that, however, the existing housing (totally inadequate) will continue - for now.

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.
Still no Res Hab.  In fact, Bil was taken off the Home and Community Based Waiver because - he isn't getting services.  Why isn't he getting services?  Because they were unable to get him Res Hab!  Talk about a "Catch-22"!  But the new service coordinator Bil has now is trying.  I hope she can find something before budgets are cut even more.

The good news (comparatively) is that Bil is still on the NY Cares list, so there is a bed out there for him somewhere if his mother's health takes a turn for the worse.  However, who knows where that bed would be.

We actually started this advocacy journey, as I mention above, in 2001.  And where have we gotten?  Maybe just a little further along on the NY Cares list.  That's all.

Sunday, October 16, 2011

Waiting to Advocate

I am hoping Bil's medicaid service coordinator (MSC) is having success with her research in trying to figure out how we can get NY Medicaid to continue to pay for one of his prescription medications.  It's a medication that benefits him very much, and can be difficult for a person without autism to switch due to its nature.  For Bil, I fear the experience will be traumatic.

So far, nothing, and the MSC has made me quite aware that it is going to be quite a struggle.  The MSC is facing this with a lot of consumers (as "clients" are called.)

I've blogged about this before, and all I can say is that I am still in a holding pattern on this, and also the wait for more details on the People First waiver.

Wish Bil luck with the NY budget cuts and all NYers with autism, because they are going to need it.

Saturday, October 15, 2011

Bleep Yeah

Although I sometimes vent concerning my mother in law, an "autism Mom" (her son with autism is in his 50's) she is a true Autism Mom.  She cleared the path for the generations of autism Moms to follow.  How sad that the rates of autism still seem to be increasing.

I would like to provide this link to a blog post about "autism Moms". 

Looking at this, I found one of the funniest sites you will ever find out there.  This Autism Mom is the total opposite of my prim and proper 80 plus year old mother in law.  But I have a sneaky feeling they would love each other.  Well, maybe not, because their politics are totally opposite.

But I still love this woman's point of view.  And even the four-letter words she uses (constantly) to express herself.  Cause sometimes you just have to do that, when you face something like autism.

Bleep yeah.

Give her website a visit.

Friday, October 14, 2011

The Department Store Fall

Today I was shopping in a local department store when I heard a very loud "thud".  Within seconds, I heard exclamations of surprise and employees running towards an escalator.

It was obvious something bad had happened.

A few moments later I saw an employee carrying a cane away from the scene.  And then I heard sirens, and a couple of medical people entered the building.

My heart sank when I saw the cane.

It could have been my mother in law.  And what if Bil had been there with her, as he is enough times when she shops - because he likes his outings.

I wonder what happened.  I probably will never know.

Wednesday, October 12, 2011

Autism and Medical Coverage

I found this blog post interesting - about the possible effect of the Health Care Law on autism mandates.

In case you are wondering why so many people with disabilities need Medicaid, this is a perfect example.  Health insurers have been slow to "step up" and cover autism.

Meantime, we wait for Bil's Medicaid Service coordinator to finish her research on what we may want to try to do to keep Medicaid coverage for one of Bil's medication - they will no longer pay for the brand name, and it is doubtful right now that they will even pay for a generic.

But on the other hand, people with autism may finally be able to get some health insurance.  In the past, health insurers have refused coverage for non-autism related illnesses - just because the person has autism.  Shall we hope no more?

And now, back to fighting Medicaid formularies.

Tuesday, October 11, 2011

Fred Fay and Temple Grandin

Today, while I wait for Bil's Medicaid Service Coordinator to provide us more information regarding Bil's medication issue and Medicaid (it may take upwards of a week or more for the MSC to research), I received a sad email from Wrightslaw.

Fred Fay, who suffered a spinal cord injury years back when he was 16 and became a pioneering advocate for people with all disabilities, passed away on August 20.

The good news in this is that PBS will premiere a film on his life, Lives Worth Living, on October 27.

This film is advertised to be both a biography of Fred Fay and a documentary about the Disability Rights movement.

Today I also found, in the local library, the HBO movie on Temple Grandin, arguably the most famous person with autism alive today.

Two people who affected our lives-and Bil's, in different ways.  Two wonderful films in a month.   Can't wait.

Monday, October 10, 2011

Budget Cuts Come Home to Roost

After months of wondering what effect the budget cuts in NYS programs would have on Bil, I need wonder no more.

The new Medicaid Service Coordinator (MSC) is in a hard spot concerning the situation with one of Bil's medications no longer being covered under Medicaid. (I blogged about this several days ago)  It's a type of medication that is hard to switch (that's all I will say about it.) but very necessary for Bil's health.

If Medicaid won't pay, Bil must pay out of pocket.  Now keep in mind that Bil works part time, in a sheltered workshop.  This is not the road to riches.  It is the road to poverty.  The one hope here is to try to get Medicaid to accept a generic (which may or may not work like the brand name - with this medication generics are not always as effective) and we will have to see if the generic works.

If not, we try to find out where to get this drug at a reasonable price.

With all the budget cuts in New York State this, according to the MSC, many people dependent on Medicaid are in this same situation.

Please keep in mind, when you read about Medicaid, so many people think "welfare queens".  But many disabled people are on Medicaid.    It is a life line for many.

A lifeline that is fraying.

We'll have to see what the MSC can come up with.  But how many times does the MSC see this with other clients?  And will this be just the first of many situations to come for Bil?

Sunday, October 9, 2011


Just a short, hopeful note today.  It appears Bil's current MSC (Medicaid Service Coordinator) is very approachable by email.  Things finally seem to be moving.

It also appears she is willing to work with Bil directly rather than have to run everything past my mother in law like the previous MSC seemed to like to do.  I don't intentionally want to cut Mil out of the loop but Bil has to learn to self-advocate.  I think he's capable but needs practice.

I hope we can continue to progress on this front.

Saturday, October 8, 2011

More about Self Advocacy and Autism

I've been thinking a little more about the fact that Bil's Medicaid Service Coordinator contacted us about a request Bil had made - actually a concern that he had expressed to her about the fact that Medicaid will no longer pay for one of his prescriptions unless he switches to a generic.

What I found interesting (although I do not know the entire story) is that he came to his Medicaid Service Coordinator, rather than his mother.

That makes me very happy.

No, I'm not happy that my mother in law was bypassed. But rather - Bil is in his 50's.  He should be able to advocate for himself. 

He's never had any formal training, and he has a disability that affects his ability to communicate.  But when he needed help, he sought out someone (his new Medicaid Service Coordinator) he hasn't known for that long.

I have a feeling this new Medicaid Service Coordinator is going to work out well for Bil.  Let's cross our fingers.

Friday, October 7, 2011

Generic Drugs

It seems that Medicaid is no longer going to pay for a medication Bil takes because he is not taking the generic.  Bil is concerrned and went to his Medicaid Service Coordinator (MSC) for help.

I am so glad to see that Bil took this initiative. 

My research seems to indicate that the generic, in this case, is not as effective as the brand name.  I take a number of medications and with one exception, they are all generics.  I found that one generic just did not work.  I take the brand name.  I am fortunate in that this (brand name) is not tremendously expensive.

I see where Medicaid is coming from.  They need to spend their money wisely. As a taxpayer I agree.

But I also know from the above experience that (despite what health insurers say) that certain generics do NOT work as well as brand name.

At any rate this is a  medication Bil needs.  Looks like I will be putting on my advocacy hat. But first, Bil will need to try the generic.  He will need to communicate with us if he feels any change for the worse.

It will be a challenge for him to put this into words rather than into behavior.

This will be interesting.

UPDATE:  The problem is not that Medicaid won't pay unless Bil takes the generic. The problem is, apparently, that the medication has dropped off Medicaid's formulary.  His MSC is going to try to get it covered as a generic but needs our assistance.  If they won't he will have to pay out of pocket.

Sunday, October 2, 2011

An Insight into Anxiety

Another restless night, hearing the rain pound on the roof here in the Southern Tier of New York.

Will the rain stop?  Will it flood again?   Should I go down and check the basement?  Should I check our street to see how much water is in it?

Over 100 miles away, I'll bet Bil is watching The Weather Channel.  He's always been anxious about rain.  He hates thunder, but even rain scares him.  One time he was looking forward to a visit up here but it was raining, and he refused to get in the car.

He must be watching the radar and weather report for our area.

About three weeks before our area was flooded, with almost half of the city of Binghamton evacuated (the call came for people I know at 3 am), Bil and his mother were brought up here for safety from Hurricane Irene.  Bill and Mil missed about 5 days without power.  But their basement was OK.  No water.

Now I have a little taste of what Bil goes through on a daily basis.  The difference is, of course, is that I do not have autism.  I can tell myself to calm.  I can tell myself I am not helpless. I can research how to deal with the mild post-traumatic symptoms I and others who went through the flood may have.  I can tell myself I can take action.  I can tell myself it will be all right.

I don't think Bil can do any of these things.  And therein lies the difference.

I thank life for this opportunity to walk in Bil's shoes.

Saturday, October 1, 2011

Prince John and Bil

Whenever I watch a movie, my ears always perk up when I hear a story or link to a disabled person.

Tonight, finally, I got around to viewing the move "The Kings Speech".  This award winning movie talked about the speech impediment of Prince Albert, the future King George VI who was the King of Great Britain during World War II.   He was the father of the current Queen, Elizabeth II.

What I did not know about George VI (besides the fact that George was not his first name) is a little known historical fact that he had a severely disabled youngest brother, John, who died in 1919 at the age of 13.  John was mentioned briefly in the film.  As the fifth and youngest son of King George V, he would have been 5th in line to the throne.

John did not have autism.  He had severe epilepsy, and died as the result of a seizure.

As was the custom of that day, John was kept out of the public eye, least an epileptic seizure bring shame to the Royal family.

Not too many years ago, that also would have been Bil's fate, even if he had been a member of the British Royal family.   Especially sobering is the fact that many people with autism have problems with seizures (although Bil does not.).  But Bil has never been hidden away.

Times have certainly changed.