Bil Still Not Able to Go Home after Irene

Bil is spending at least one more night up here in upstate NY.  Power to the house where he lives with his mother in law was just restored tonight, and a neighbor advises us the power comes on, it goes off, it comes on.

His cold seems better.  So did his appetite.

We wouldn't be able to take him and his mother home until the weekend - my husband and I both have to work.  But another family member may be able to take them home. We aren't sure he will be able to do so - it's a bit up in the air. We should know tomorrow.

Tonight Bil's appetite seems to have improved. I think he is sensing the end of his exile.  He knows the power is back on. When he was getting ready to leave he turned to me and said "we have a 50-50 chance of going home tomorrow".  And then he said "I hope I go home tomorrow".

This is one of the clearest communications he has ever had with me.  It came out of nowhere.

Not only that but Bil seemed not to mind us not having the TV on during the visit.  I'm a bit burned out on noise (my mother in law is hard of hearing and she wants the TV on at supersonic levels) and I just wanted it off.  He didn't even ask once to have the Weather Channel on.  His anxiety level was way down.  I guess that is what hope does to someone-the hope of seeing home again.

It's been a good experience having the family up here, and it has also been stressful.  But for their sakes, I hope they do go home tomorrow.

Autism and Taking Refuge From The Storm

Bil is lucky.  He has been with family in the Southern Tier of New York since this weekend, before Irene moved in.  Where he lives is still without power.  The power won't be restored, according to their electric utility, before Thursday or Friday.

He has been patient, amazingly so, but is restless and we know he wants to go home.

He is fortunate in that he has visited here before, and is familiar with his family here, and their homes.  But he has been a bit under the weather (literally) with a cold.   He is really fortunate that he did not end up in a shelter.  And that we did not end up being flooded out, which could have been a possibility.  We didn't miss being flooded at our house back in 2006, when massive flooding hit our area.

People with autism who end up in evacuation shelters are unlucky indeed.  They are noisy, smelly, chaotic:  Everything that people with autism can not tolerate.  There is no opportunity for privacy, such as Bil has here.  Bil can watch TV here if he wants.  In a shelter that would be impossible.

Bil suffers a lot from stomach problems, and he would have no choice of food in a shelter.  And no private bathroom to work out his stomach problems in.

People with autism can react to stress by having tantrums, or stimming, and people who run shelters, generally, have no clue as to how to deal with that behavior.  In general, they do not receive this type of training.  Even after Katrina, even after other disasters, this training is lacking.  Medicaid service coordinators do not deal with the possibility of their clients being evacuated with creating plans for their clients.  It is something not thought of until it is too late.

That is going to become a problem as our population of people on the spectrum continues to increase.

I have no solution for this.  Just gratitude that Bil did not have to go through that kind of experience - this time.  Because we had a friend who offered to help us out - and it turns out she was a victim of the flooding.

Let's home Bil doesn't lose patience before it is time to go home.

Bil is Safe

Bil is safe up here.  He was brought up here by a family member.

It will be an interesting weather day for us here on the East Coast.  A friend in NJ says things are pretty crazy there.  I've been in communication with a friend in Brooklyn and a friend in Queens and they are OK but there is a lot of damage out on Long Island.

As for the suburb where Bil lives - we will have to wait till tomorrow to see.  Don't know exactly when Bil will be able to go home so right now - we just watch and wait.

The Approach of Irene - 24 hours to Go

NYC is hunkering down with mandatory evacuations.  My mother in law and Bil are not in those zones.

LoHud (local newspaper for Westchester and Putnam County) has lists of emergency services.

Bil and my mother in law are going to stay put in their suburban NYC home.  It is going to have to be a good choice because the bridges across the Hudson River are probably going to close sometime tomorrow.  We won't be able to get to them even if we wanted to.

We've done what we can; we hope the family member shows up to stay with Bil and my mother in law.

Although we are not in an official danger zone where we are, we just bought bottled water and will make sure our cell phones are charged.

Earlier this week there was a bad storm at my mother in law's house and Bil was terrified. Well, I would have been too!  I hope Bil's anxiety doesn't overwhelm her.  Or him.

24 hours to go.

Autism and Hurricane Irene

We aren't the only people out there worrying what will happen if Hurricane Irene impacts a family member with autism.

I remember accounts of the aftermath of Katrina, and the inability of families with a family member (I won't say "child" because there are adults, too) to get timely help.

There is at least one resource online but again (and I hope I am wrong) this concentrates on families with autistic children.  As in non-adult children.

Well, I have a family member in his 50's.  He is terrified of severe weather.  We are hoping that a family member living much closer to his mother than we do will be able to stay with my mother in law and Bil, who live together in a suburb of New York City.  The family member will make sure they have adequate supplies of food and water, that cell phones are charged, that they will not be alone.  Otherwise, we would have had to go down and get them.

That in itself would have been stressful for Bil, because his routine would be disrupted, and because he seems to exist in a constant world of low level anxiety.

And one way or the other, Bil is going to undergo major stress and anxiety due to Irene.  As I blogged before, Bil follows the Weather Channel religiously so he already knows Irene is on the way.

He isn't the only one.  In doing an Internet search I came across a blog written by someone with autism, talking about the coming of Hurricane Irene.

This is going to be an anxious time for all of us - the relatives near NYC and we, out of the direct path, but holding our breath to see what will happen.

Hurricane Preparations?

Trying to ensure that my mother in law has adequate food, water, other supplies, and possibly someone can either stay with her and Bil or even bring her up here.  Hurricane Irene is on the way, and people in the New York City metropolitan area don't have experience with hurricanes - unless they used to live in a hurricane area.

Long distance caretaking can be so much fun (not).

Better to be safe than sorry.  We are in the way, too, but it wouldn't be as bad here as it may get where Bil lives.

As for us - we need to get some water stockpiled also.  And some canned goods.  For us it will be more wind and floods.  This area has had massive floods, and we have a lot of trees around us.  For Bil, I hope he is not terrified.  He is always glued to the Weather Channel and he is terrified of heavy rain and lightening.  He certainly knows this storm is coming and he is probably driving my mother in law crazy with his anxiety. She is a strong woman, but you can only be so strong when you are in your 80's.

Hurricane Evacuation?

Just as I was wondering how the Northeast earthquake affected Bil (did he feel it wherever he was?  How did he react?) we have to worry about Hurricane Irene.

My mother in law's house appears to be in the high risk zone.  An 80 plus year old woman and her son with autism are not a good mix with a pending natural disaster.

They are not in a flood zone but this would not be a good thing for them to go through especially
a. if they lose power or
b.  a tree falls on their house

Now we have to wonder if we should drive down there and bring them up here.  We don't have much room and there would not be motel rooms available here, with the students returning to college. (we already know this from a previous time they were going to visit.)

We have a couple of more days to make this call.    The funny thing is, we are on the border of the high risk zone ourselves.  We may be moving her out of the frying pan and into the fire.

We just don't know.

Social Security Disability in Danger of Insolvency

So....still another worry concerning Bil.

Apparently the SSDI system is on the verge of insolvency. This fact has been swallowed up in all the discussion about Social Security in general.  But, a lot of disabled people depend on their SSDI.  And Bil is no exception.

 Bil's father is dead.  His widowed mother takes care of him.  She has her Social Security. Bil gets SSDI on his late father's account.  It is NOT welfare.  It is a benefit based on his father's work record. And Bil has his job in the sheltered workshop, and his SSDI check.

Sheltered workshop jobs, it seems, do not pay well.

Could you live on 50% of minimum wage?  We don't know exactly how much Bil makes (his mother has never disclosed this to us) but it is possible it is only 50% of minimum wage.  Or it could be that Bil isn't exploited in this way, but he can't be making that much. And, the area where he lives with his mother (the NY Metropolitan area) is not a low cost of living area.

How many other people are in this situation?  The SSDI isn't spending money.  It's living on money.

To understate it, this isn't good.

The Next Steps

I am going to take a change and email the new Medicaid Service Coordinator assigned to Bil. The previous one never did much with email, claimed that PARC (Putnam ARC) discouraged it.  I would find that very hard to believe nowadays.  I think, rather, she must have been uncomfortable with it.

The new Medicaid Service Coordinator is young. Hopefully she will email back. I plan to ask if we can set up a phone call at a convenient time for all of us (probably just my husband and her, but to include me depending on her work hours.)  We have a lot of questions to ask.
-what do budget cuts mean for Bil?
-exactly what is the People First program and what does it mean for Bil?
-is there any chance of getting Reshab services for him, to help teach him skills leading to independence?

Finally we understand that Bil at work, will ignore, or procrastinate, with work he is assigned that he just doesn't feel like doing.  At the sheltered workshop level this is tolerated.  At anything higher, it would never be.  Bil has to be able to learn a better living than he can at a sheltered workshop, working part time.  Is there any possibility that this problem can be worked on?

Regretfully, this has been ignored in the normal business of our life.  I am ashamed to make this admission.  I will send the email tomorrow, and see if we get a response.

Another Triumph for People with Disabilities in NY (we hope)

Governor Cuomo does it again.

Although I am not sure exactly how badly budget cuts will affect Bil (we already know it won't be for the better) Governor Cuomo is proving to be a good advocate for the developmentally disabled.

It's about time for some accountability.

Short and sweet:  the former OMRDD can no longer get away with policing itself.

Abuses must end.

Let's hope this is a step in the right direction.

Help or Not Help?

I am very glad I have not been faced with this dilemna

Read this post.

What would you have done?  Would you have ignored the struggling people?  And how would you have reacted when you finally offered help, and they were nasty back? 

I'm not sure what I would have done.  And that's sad, in a way.

What a world we live in.

Trying to Exercise Bil

Every time we see Bil (right now, about once every two months - we live 150 miles from him) it is obvious that he has gained weight since the last visit.

Bil lives with my mother in law, whose mobility continues to deteriorate due to arthritis, and falls.  She used to love to mall walk but it is almost impossible for her now.  The winter especially poses challenges. This past winter he was housebound for weeks as his mother recovered from a fall.

Meantime, there is no close family member to take up the slack and accompany Bil to the mall. (or drive him there, either).  When family comes, their concentration is on my mother in law, and Bil's exercise needs get overlooked.. Bil does like to walk in the mall, but he does it slowly. The one time we ever tried to get Bil to do some exercise walking with us, my mother in law practically read the riot act to us because - what if he had an asthma attack?

I now discover that we are not alone in this fight.

The next step would be:  how do we implement the suggestions in this article?  Bil can't get to the mall on his own. (I suspect the mall is the one place he would exercise, because that is where he used to accompany his Mom.) And, we've never been able to get a reshab provider for Bil to take him out.  But we can't give up.  He has to stop gaining weight.

I hadn't done a Google search in over a year on the subject (trying to get inspiration) - this time I actually found a couple of links (see above).  There is another link that shows promise although right now there is no information concerning adults. But the good news is, some attention is starting to be paid to this

I just wish we could think outside the box.  Because right now I feel like I am at a total dead end, just talking about Bil: talking talking talking and not doing.

The More Things Remain the Same....

Another visit with Bil and my mother in law concludes 

Incident:  It was dinner, and my sister in law had set up a table with food so we could all serve ourselves. Bil is always served by his mother.  So of course he expected to be served.  My sister in law told him he needed to get his own food.  (Even as her mobility deteriorates, and he is supposed to be helping her, it sometimes seems years of habits on her part just don't change.  Not that I don't realize how hard it is to break habits, but she has to let him develop some independence!)

Outcome:  he did get his own food.  But the next time we had dinner, the scenario replayed itself.

Incident:  Family socializes in living room, and just a few feet away, Bil sits by himself and watches The Weather Channel.  Family member tries to get Bil to sit with us.  Bil's mother asks Bil to sit with us. 

Outcome:  Bil reluctantly sits with us, for perhaps 5 minutes, then back to the Weather Channel.  My mother in law makes an excuse that he is anxious about the weather (there is a chance of rain). 

Incident:  Every time we see Bil, you can see the weight gain.  Bil still will not exercise.  His excuse is his asthma.  And now that my mother in law finds it hard to do things like mall walking, he is getting even less exercise than before.  He also has a sweet tooth.

Outcome:  I truly believe my mother in law is trying her best, and fighting a losing battle that she doesn't have the energy to fight.  I have no idea how to get Bil to move.  I am truly worried about his health.

I will write more about the exercise issue tomorrow.

The Number 18

Earlier this week, the son of an awesome area autism advocate I have blogged about before turned 18.

18 is one of the most important numbers in the life of a person with autism in New York State.

When a resident of New York State turns 18, he or she becomes an adult. The law (I'm speaking here as a layperson-I am not a lawyer or have any type of formal legal training) presumes such person is a competent adult fully able to take care of his or her affairs.

The parents lose their ability to advocate for the child/now adult.  The adult must now advocate for his/her own self.

Although this may have changed in recent years, it was my understanding years ago (when I took some training in preparation for one day needing to be responsible for Bil) that, prior to age 18, it was relatively inexpensive to file for guardianship of an individual with an intellectual disability.  After 18, it becomes a lot harder (and more expensive).

Which is where we are with Bil.  Bil, of course, is way past age 18.

Bil's mother authorizes his medical treatment.  She helps him deposit checks and basically tells him what decisions to make.  He sees the world through her eyes (figuratively)  Bil has never had a guardian, a representative payee, or anyone officially appointed to help him with aspects of his life requiring decisions.

At this point in time it is unclear if Bil would need a guardian or exactly what he would need.  However, Bil's former Medicaid Service Coordinator told us that, in her opinion, Bil could never be self-sufficient.  I trust that judgement. She had worked with Bil for years.

So far, Bil's mother has resisted any effort on our part to talk to her about any of those issues.  Which means, should she suddenly become incapacitated or worse, we are not going to have a fun time of it.

On the other hand, I am sure that the autism advocate whose son is now an adult in the eyes of New York State has made such arrangements.  Her son is lucky.

Bil?  I hope we are up to it when the time comes.  We will have a steep learning curve.  I wish I could outline that information from years ago, but it is outdated now.  So much to learn.....

A Farm Residential Community?

Yes, indeed.

I recently read about SustainAbility.  This started out as the dream of an adult woman with autism - to live on a farm.

Her mother is helping the dream come true, not only for her, but for (right now) about 11 other adults.

This isn't a "first", at least for adults with autism.  There has been a movement (if that is the correct word) for many years, the Camphill communities.  One of my relatives knows someone whose teenaged son attends the Camphill school in Pennsylvania.

But where Camphill works with people with disabilities in general, SustainAbility warns of the crisis our country is about to enter into when all the children with autism grow up.

Must be an echo in here.  I've been talking about this for years.  Bil is just the beginning of this crisis.  Just wait, 10 years from now.  And just wait when all of today's parents of children with autism enter old age.

For Bil and his Mom (and me) that day is already here.

We need housing options.  And quick.  Hurray for that Mom who took action.  Thank you, from the bottom of this sibling-in-law's heart.

People First Waiver-The Only Constant is Change

How interesting. I had blogged several months ago about stumbling across something called the "People First Waiver" but never had time to do more research until now.  If we ever get hold of Bil's new Medicaid Service Coordinator, we will need to find out more.

One thing seems obvious...they don't seem to be reaching out to the siblings or siblings in law to get their input.  So only now do they have a questionaire?  I'll be filling this out shortly.

August 4, 2011 Dear OPWDD Stakeholder: In recent conversations with members of the OPWDD community, I have learned that some confusion exists about the purpose of the new 1115 waiver and the changes it will bring. We have worked hard to make all the technical information our design teams and staff are using to study options and possible features of the new service system available to everyone on the People First Waiver Web page. While we have provided a lot of complex information, it appears we haven't yet clearly communicated what the new waiver will mean for the individuals and families we support. I will try to address some of the questions I have heard in this letter. Is the 1115 waiver a way to achieve budget cuts? First and foremost, the People First Waiver is NOT a means to cut OPWDD's budget. OPWDD's budget is directly affected by New York State's fiscal situation, tax revenues, and lawmakers' decisions about how to fund, within the limits of those resources, the many services New York State government provides to its citizens. The People First Waiver is not part of the budget process and will not bring further cuts to the OPWDD budget. Likewise, it will not shield our system from the realities of the economy. Will I lose services as a result of moving to the People First Waiver? Although there are many decisions yet to be made, we fully expect that on "day one" of the People First Waiver, all of the services that you or your family member receives will transition smoothly into the People First Waiver. We will continue to meet the same needs for service. However, the new waiver is allowing us to review how well those current options are supporting people and what ways we could do things better and promote better personal outcomes for individuals and families. Over the five-year course of the waiver, we will carefully test ways to better access services, new service options, ways of organizing care, paying for services, and measuring quality by implementing and evaluating pilot projects. The ideas that work well will ultimately be made available on a statewide basis, with careful and thoughtful implementation and continuous dialogue with you, the people we serve. The transition, from testing of ideas to implementation, will take several years. The services you receive may change somewhat, but we promise that the changes that result from the implementation of the People First Waiver will always be done carefully and in a transparent way with advanced notice to all individuals and families. There is a lot of talk about "efficiencies." What exactly do you mean? While the People First Waiver will bring changes in how the system operates, those changes are our opportunity to respond in better ways to the needs of those we support and make sure our service system is robust and stable for decades to come. The reforms of the People First Waiver will allow us to more accurately determine someone's needs for services, and then provide "individualized" services that will best meet their needs. In this way, the system will be more efficient, directing funding to services that are needed, rather than funding programs and levels of service that do not support someone to achieve their personal goals. This increased "precision" in how we target services to peoples' needs will also establish greater equity in the availability of services throughout New York State. To get there, we plan to update and improve how we assess an individual's needs so that we appropriately provide greater levels of service to those with greater needs. This could mean changes for some as individuals move into less restrictive settings and begin to enjoy more inclusive and meaningful lives. For many others, it will mean confirmation of their need for close supervision and support. Again, I assure you we will be careful and cautious as we plan for the implementation of these changes and will communicate with everyone about how the service system will respond to their needs for support. OPWDD stands firm in our commitment to protecting the health and safety of everyone within our service system. The agency that provides services to my family member is like a part of our family. Will I lose that contact? We recognize that service providers have been and will continue to be the foundation of the new service system. As we move from a fee-for-service billing arrangement to a care management structure, we will move slowly over a period of several years to allow the voluntary service providers to adapt and find their most successful and stable position within the new system. As we expand the types of services they provide and develop a new process of coordinating and paying for that care, we will work to ensure continuity of care for individuals and families and avoid abrupt and disruptive transitions. Again, we will communicate openly and continuously as these changes unfold over a period of several years. How can I share my ideas about the 1115 waiver? Finally, I want to assure you that OPWDD is relying on all of our stakeholders, and especially on the people we support, to help us design the details of People First Waiver system reforms. We've held listening sessions and public forums and provided an online survey that gathered many valuable comments and ideas. With this letter, I am announcing a second online opportunity for you to help us design the waiver so that it achieves its objectives with the full support and advice of the people we serve. The survey can be found at the People First Waiver Web page (www.opwdd.ny.gov/2011_waiver/index.jsp). I hope this information helps you to understand and support the development of the People First Waiver. It is a vitally important next step in the improvement of our service system, and therefore, it is critical that all of us who know and care for individuals with developmental disabilities understand what it is. Please share this letter and its clarifications about the People First Waiver with your colleagues and take part in the new online survey about the waiver. Thank you. Sincerely, Courtney Burke Commissioner

"I Am the Sister"

One of my recurring themes is the fact that parents of those with developmental disabilities seem to get all the attention, while the siblings have to deal with so many issues of their own-sometimes without very much support at all.  (and their loving spouses....even less attention and support than that.)

I was interested in this post because the guest poster in this blog entry is a "special needs sister".

To be exact, she is the sister of two siblings with autism.

But you know what?  This very loving sister (bless her!) is only 21 years old.  I, on the other hand, am quite a few years older than that.  And I hope she has support when it is her time to care for her brothers.  Will her parents "make arrangements?"  Will they discuss her brothers' future with her?  Or will they stick their heads in the sand and refuse to deal with it like another family I know?

The Slow Boat to Amsterdam

You know that essay?  The one called Welcome to Holland? 

The one that every parent or sibling of someone with special needs is sent once (or more than once) in their lives?

I have never really liked it.  And, although I am not the parent of someone with special needs (well, actually, saying that is a little complicated and not entirely true-I'll just leave it at that as the person in question is very private and I respect that) that essay has always bugged me in a way I can't explain.  I guess it comes down to:  it tells about the beginning, and the end  but not the middle.  That middle that begins a couple of weeks after you are punched in the gut.  Not the pain, the heartbreak, or the struggle to educate yourself, to adjust to a new normal.

Sometimes it takes years, I know. And that shouldn't be discounted. Or skipped over.  Or plastered over with smiley-faces.

Sometimes the family of those with special needs are also thought of as being saints and that isn't true either.  There is frustration, and days that start out all wrong and go downhill from there.  They curse, they swear and sometimes they wish their loved ones had never been born.  That shouldn't be skipped over either.

So, today, I happened to read a blog post about the Holland essay that...I guess says it all.

Thank you, 5 Minutes for Special Needs, for saying what needed to be said.  And for giving us hope that we will leave the airport one day.

A Talented Artist with Autism

I just ran across this article but it is awesome.

This young man takes a 20 minute helicopter ride over New York City and then reproduces it.

You can say it is "just memory" (a fantastic memory) but how many people could draw that?  If I had the best memory in the world the pictures would just stay trapped in there, as I can hardly draw at all.  If I try, what is in there never comes out right.

So, despite some who say this is not art, I say it is.

You have to be able to get it out.

This isn't the only cityscape he has done, and I understand there are videos of him on You Tube.

People with autism think in pictures.  And if you read this article you will see details of how this man created pictures to help him communicate with others.

Why does the brain give...and the brain then takes away?

Autism and the Military

Our military families.  They have to cope with so much. (Years ago, I was a military dependent, and know a little bit about this.)

One of the things they worry about is autism.  Remember that "1 in 150" (or 1 in 166) epidemic?  Well our military service members aren't immune to this epidemic, as this blog post points out.

And apparently, Tricare (the Department of Defense health insurance program for military, their families, and retirees) only has limited coverage for therapy.  (If I am wrong about this, please let me know.)

How military people can leave their families for far distant posts and battles, being worried about their children or other dependents with autism, is beyond the scope of my imagination.  And why should they have to?

And actually, the question should be:  why should any American family?