Utter Autism

November 17, 2011

Out of Breath

I’ve experienced labor twice.  First with Adrian and then with Zee.  The girls were taken by C-section a month before they were due.

Both times I experienced the same phenomenon.  My body doesn’t seem to know the rule is contraction, break, contraction break,…

For some reason, both times it geared up and repeatedly forgot the break.  I’d start out with single contractions and a break in between.  Within hours, it would switch to a peak-peak-break pattern.  Then on to peak-peak-peak-break.  And so on. 

I got up to 6 or 7 consecutive peaks with Adrian before I finally gave in to the epidural.  Not because I couldn’t handle the pain but because the lack of break meant I was just totally out of breath.  I remember thinking, “If only I could get a little break to catch my breath…”

That’s exactly how I feel now.  I just need a break to catch my breath…

Up until a few years ago when Adrian’s aggression really started to take over, I took regular breaks.  My husband is totally awesome and he’d take care of everything while I got away for a few days.   Sometimes I’d go to Florida to visit with my sister.  Sometimes I’d go to a peaceful church retreat.  Sometimes it was just a night out with a mom friend. 

It was all me time.  Time away from my responsibilities here at home.  Time to think, time to talk, time to pray, time to plan, …. just time.

The last time I was gone overnight was to visit my sister right before she had her first child.  He just turned 4 this past summer. 

These days I only leave Adrian at home with my husband when I have no other choice.  I worry the entire time I’m gone, watching the clock and constantly, imagining all that could be going wrong.   It’s not that I’m not paranoid.  I just know there’s a very good chance I’m going to come home to an overly anxious Adrian and a totally stressed husband and 3 siblings who wish they too could make it so Mom could get a break.  There will likely be tears, bruises and property damage to mark the occasion.  Going out without Adrian these days is no break at all.

We’re working on getting respite services so maybe we can get a night here or there without Adrian.   But it’s a long, slow process with no guarantees that it’ll work out in the end.

But I’m hopeful.  Cause I’m so ready for a break… just to catch my breath.

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November 14, 2011

Making Family Understand

One of the more difficult parts of having an autistic child is that there are no guarantees that extended family will understand the situation. 

We often host family members here at our house.  Part of that is because we are lucky to have a spare room we can loan out.  The other part is the fact that Adrian limits our travel.  Family has to come to us or we don’t see them at all.

Recently I got a call from my grandfather though.   His 90th birthday is coming up and they’re having a big party, of course!   They want us to come.

If only it were that easy.

They live nearly 5 hours away.  We’ve had problems with Adrian on a 2 hour car trip.  And by problems, I mean him banging car windows, trying to escape the car, hurting others in the car, … ya know, really bad stuff.  The kinda stuff that makes it unsafe to drive but you don’t dare stop cause you’re just so desperate to get him home and end the nightmare.

Then there’s the fact that it would require an overnight stay.  Um, I would LOVE, LOVE, LOVE to be able to get away.  I love hotels.  I love vacations.  I love road trips (where the afore-mentioned nightmare doesn’t occur). 

But hello!  We can’t do hotels with Adrian.  We have tried.  We’re lucky they didn’t kick us out.  And that was long before his man-sized tantrums began.  Before the aggression, before the holes in the walls and destroyed property. We simply can’t take him to a hotel.

And then there’s the party.  Adrian can’t attend.  Not only would he be disruptive but he’d be miserable… and guess what his behavior is like when he’s miserable?  He can’t handle crowds or noise.  We can’t even take him to a restaurant without significant problems.

So where does that leave us?  Well, it’s not looking good.  But they really want us to come so they offer suggestions.  “Can’t Chris stay at the house with him while we’re at the party?”  “Can’t you can the other kids come?”

Um, no.  See, Adrian experiences a lot of anxiety when I’m gone.  And can you guess what his behavior is like when he’s anxious?  Every moment Adrian isn’t in school, I’m the primary caretaker.  I have to be. 

Couple weeks ago I left my husband home with Adrian for an hour and a half.  I came back and Adrian had put a new hole in the wall, broken a window screen and was physically fighting with my husband.  It’s not my husband’s fault.  Adrian’s anxiety when I’m not around pushes him over the edge.  My husband works and so he spends much less time caring for Adrian and can’t always see the signs and catch him before he’s gone over into tantrum land.

Besides all that, there’s some sorta testosteroni thing going on there.  Adrian tries to get my husband going.  He will do things purposefully that he knows will anger my husband (hitting me, for instance) and laugh, as if to say, “What you gonna do about it?”  It’s not a good plan to leave these two alone right now.

Again, I would LOVE, LOVE, LOVE to get away for a couple of days.  I spend a crazy amount of time daydreaming about just that.  But right now, it just can’t happen.  It’s not safe.

So that leaves us with what?  Well, Adrian isn’t going anywhere and since I have to be with him, I’m not going anywhere.  The only option left is to send my husband with the other 3.  Yeah, he’s married into this family, remember?  That alone makes it weird. 

Add to it that he’d be leaving me and Adrian home alone.  Again.  Yeah, I’m not gonna lie.  I cried last time that happened.  It’s really hard to have to be constantly left behind.

Most of this was explained to my grandfather and his wife over the course of the phone call.  They say they understand but you can feel it, they don’t really.  They want us to come and they can’t quite wrap their brains around the possibility that there is no way.

I love my grandfather and I wish things were different.  I want to be the granddaughter he wants me to be.  But I can’t do that and also be the mother Adrian needs me to be.

November 7, 2011

Changes Coming

Both my sister and my son are developmentally disabled.  I spend a lot of my time advocating for them both.  This  involves many conversations with their care providers each week.   I deal with dozens of people,  from multiple agencies in both the adult and child disability spheres.  Generally speaking, I think I’m pretty on top of things.

So when I happened across a notice on a parent-to-parent network message board talking about upcoming changes in disability services, I immediately went to check it out.  

And I was shocked to find that major changes are being implemented in the system in a few months time.  When did this happen and why am I just finding out about it?!

It’s no secret that what’s spurred these changes on is the potential to save the state money.  Of course, they’re doing whatever they can to push that under the rug and instead throw pretty words like “choice”, “freedom” and “independence” at you.

Medicaid, which pays for the services both my son and sister receive, will no longer simply pay for those services.  These services include a residence with 24/7 care, day programming, medical and dental services (which are hard to find for the disabled), speech and occupational therapies (you recall that my son is completely non-verbal and will likely need to continue to perfect his communication skills for years to come), transportation, service coordination, behavioral interventions, psychiatric care, … and the list goes on.

As I understand it, the system will become a ‘managed care’ system (think HMO).  So now Medicaid will ‘assess’ every disabled person and assign them a dollar amount.   They pass that dollar amount to an approved agency who then has to figure out how to provide ALL the services with that amount of money. 

To save more money, they’ll be pushing for the least amount of support possible.  They’re calling this freedom, choice and independence.  This will include moving more towards living at home or in less supportive residential situations.  It means doing away with as many ‘institutional’ and structured day programs as possible and getting them ‘into the community’ as much as possible.

Obviously, with 2 family members directly affected by these changes, I had many questions.  Fortunately I found out about the whole plan right before Commissioner Burke had a live chat on the subject.  You can find the transcript here.

So let’s look at what I found to be some of the more telling questions and answers.

First, it seems I’m not the only one who feels blindsided by all this:

Submitted by Holly on Sat, 10/22/2011 – 8:42am

when and where will advance information be posted for families to have input to Medicaid 1115 waiver planning? I only learned of this web chat on 10/21, and some families may be unable to participate due to religious observances. Thank you.
Submitted by Courtney Burke on Sat, 10/22/2011 – 9:14am

Holly, it’s great to hear that you want to get involved. We are making the waiver process as public as possible. You can learn what has happened so far at http://www.opwdd.ny.gov/2011_waiver/index.jsp. Additionally, we have five public presentations occurring over the next few weeks, as well as many future events in the works. The information about those events can also be found on the waiver website. You can also sign up to receive alerts via email.

Of the 24 questions she answered, 3 were asking where, when and how to get information and give input on the system being developed.   Clearly their efforts to ‘make the process public’ has failed.  Once I found out I immediately contacted some of the service providers we work with.  THEY don’t even know.

But more disconcerting was what those implementing this new structure don’t know yet. 

Submitted by Carol on Sat, 10/22/2011 – 9:03am

Giving people with developmental disabilities more freedom, choice and independence sounds like a wonderful goal. However, those of us who have family members with these disabilities understand that the nature of their disability means that giving them this is often NOT what is in their best interest. By definition, they have a inability to think, reason and function as a typical adult. They are developmentally not able to make good choices about their own living arrangements, goals and expectations for life. I’m one of many people with a loved one who is higher functioning and as such, I’ve not gone through the extensive work and expense to become her legal guardian. What safeguards will be in place to be certain that she will not be talked into a ‘less restrictive’ environment she can not handle? For people without a legal guardian, who will be determining what freedoms and choices a particular individual can really handle? How will crisis situations be handled if/when developmentally disabled adults end up in situations with more freedom and independence than they can handle?
Submitted by Courtney Burke on Sat, 10/22/2011 – 9:28am

Great question. Because the waiver is still being designed, we are considering these very issues. A primary goal of the 1115 waiver is to evaluate each individual’s abilities to determine the most appropriate level of services. This should lead to individuals having better access to more integrated lives. We are aware that we need to make sure the waiver also provides appropriate safeguards for crisis situations. People who conduct assessments will be properly trained on new assessment tools that will better determine what supports individuals need.

Don’t worry, they’re ‘considering these very issues’!  Um, yeah.  Watch the videos they’re putting out to promote these changes. They’re ready to pull the trigger on the beginning stages of this in a few months time but they’ve not figured out the answer to this beyond ‘properly trained’ people and ‘new assessment tools’.  That’s just scary to me.

Another thing they’re still working out is how to make the funding of this work.

How do we make sure that nedded resouces go dircetly to service provision and don’t just end up in the pockets of program administrators? Greater transparancy is needed.
Submitted by Courtney Burke on Sat, 10/22/2011 – 9:22am

I absolutely agree that greater transparency is needed. We have begun to make information publicly available on our website about nonprofit providers and their performance. We will be rolling out additional information about the quality of services for providers in the coming months, as well as information about use of resources. In addition, I am participating in the Governor’s task force on executive compensation for nonprofits, which is looking system wide at their use of Medicaid dollars.

 I’m not only worried that the dollars going to the agency could end up eaten up by administration costs.  I’m also worried about how these agencies will deal with being short the funds to provide all the services.  They may be non-profit, but the ‘profit’ becomes whatever they can ‘save’ in money not spent.  They will be highly motivated to provide the least amount of services.  The state is banking on it.

Thank you for speaking with us this morning. I am the mother of a seventeen-year-old son with moderate/severe autism and I am employed full time by one of your provider agencies as well. I’ve been told by a Trustee of another provider agency that, despite the plethora of information you’ve disseminated to the contrary, when April 1st arrives, all stakeholders, not just those who choose to participate in a DISCO pilot, will provide and receive services under their regional DISCO. In other words, all agencies will lose their rates as of April 1st and be will be mandated to join a DISCO in order to continue providing services. Can you please state whether this is true, and if it is true what specific plans are in place to ensure continuity and availability of services. It’s hard for this mother to envision provider agencies losing their rates for a presumably much lower rate under the DISCO, without jeopardizing their fiscal sustainability and ability to serve their clientele and expand to meet the needs of the tsunami of children aging out of the educational system. Thanks again for your time.

Submitted by Courtney Burke on Sat, 10/22/2011 – 9:06am

First of all, we aren’t certain the waiver will definitely begin on April. Second, a demonstration period will happen first, so not everybody will be participating in demonstrations in the first year. Third, the purpose of the demonstrations is to see how well a new rate setting process works well and where it’s shortcoming are.

 I’m disappointed that she didn’t really answer a question here.  She’s not “certain the waiver will definitely begin on April.”  So what?  It’s probable?  Not probable?  When will you know and what determines if it will happen or not?  Does anyone know?

Then the demonstration period will happen first.  But not ‘everyone’ will be participating.  Of course, that could mean most everyone would be participating or only a few would be.  Which is it?  And more importantly, what say will the disabled and their advocates have in participating or not?   Cause that seems kinda key when you’re doing it to find the shortcomings.  I don’t want to be the guinea pig.

So my next concern is the push towards employment.  I’m not saying this is a bad thing.  It may be a very good thing for some individuals.  My problem is that they seem to really be missing some realism in their plan here.

Submitted by Marisa Oni on Sat, 10/22/2011 – 8:43am

How does OPWDD plan to promote employment for people with disabilities
Submitted by Courtney Burke on Sat, 10/22/2011 – 9:38am

Employment is a major priority of the agency. We are part of a national network that plans to double the number of individuals in our system who work – from about 9,000 to 18,000 people. This coming week OPWDD will hold its annual Works For Me awards celebration, honoring the great businesses who hire individuals with developmental disabilities and their employees. Information about the event can be found online at http://www.opwdd.ny.gov/news/new_opportunities.jsp We are looking to strengthen partnerships with private businesses and other state agencies to ensure individuals have the skills they need to successfully maintain employment.

 With the current unemployment rates and tons of typical adults unable to find work, how on earth do they think the occasional pat on the back is going to encourage employers to hire disabled people who were previously unable to secure employment? And they’re going to “ensure individuals have the skills they need to successfully maintain employment.”  Great.  Um, how do you do that?   Will there be a ceremony to hand them out their skills and send them on their way?  Most of the disabled folks I know would love to be employed.  They just don’t have the skills to be competitive in today’s job market and they likely never will.  That’s a pretty common thing among the developmentally disabled. 

Ironically, with all she doesn’t know, Commissioner Burke felt perfectly qualified to answer this question:

Submitted by Scott on Sat, 10/22/2011 – 8:48am

Why are autism rates increasing?
Submitted by Courtney Burke on Sat, 10/22/2011 – 9:17am

I believe it is not that the rate of autism is increasing, but diagnosis. Like many developmental disabilities, there has been a historical lack of understanding and knowledge. As society becomes more aware, more diagnosis are occurring which better sets us up to provide individuals and families with the supports and services they need.

Whoa!  Did she just arrive at this party?  Does she have no clue this is a much contested point of view?!  The fact that she thinks she knows the answer to this doesn’t inspire much confidence in her ability to understand and serve this community. 

I get that the state wants to save money.  I get that they’re reacting to some bad press about some bad things that happened on their watch.  What I don’t get is if they have any clue what these changes will mean for the developmentally disabled and their advocates.  What will really happen, not just all the pretty words and idealized ‘outcomes’. 

I have a sinking feeling Commissioner Burke doesn’t have a loved one she has to worry over being re-assessed.   She doesn’t have a son who needs the more structured, institutional settings to be safe.  She doesn’t get how incredibly difficult it is to advocate for the developmentally disabled even with support.  Like so much about her plan, she just doesn’t know.

I hope she knows how to listen…

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