Friday, September 30, 2011

Autism and Insurance Coverage State Laws

An update from the National Conference of State Legislatures has been posted to their webpage on insurance mandates by various states. The last change to a state law was posted in May 2011, but several changes will be taking effect in approximately a dozen states in 2012 based on these laws and language in the federal Affordable Care Act:

Autism and Insurance Coverage State Laws: A total of 33 states and the District of Columbia have laws related to autism and insurance coverage. At least 26 states—Arizona, Arkansas, Colorado, Connecticut, Florida, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Massachusetts, Missouri, Montana, Nevada, New Hampshire, New Jersey, New Mexico, Pennsylvania, South Carolina, Texas, Vermont, Virginia, West Virginia and Wisconsin—specifically require insurers to provide coverage for the treatment of autism. Other states may require limited coverage for autism under mental health coverage or other laws.
Some states have passed laws with numerous exemptions, especially for their own state-operated insurance programs meant for families in need. Ironically, the ACA itself seems to allowing states to limit coverage of autism treatments. The reason for this is that the federal government has suggested states only need to offer specific minimums. The states have decided to follow federal minimums. For example, Arkansas amended their insurance law to read:
The law specifies that on or after January 1, 2014, to the extent that these provisions require benefits that exceed the essential health benefits specified under the federal Patient Protection and Affordable Care Act, the benefits that exceed the essential health benefits shall not be required of a health benefit plan when the plan is offered by a health care insurer in the state through the state medical exchange.
Of course, every insurance company will find a way to participate in the exchange markets if this allows the companies to decrease coverage offerings.

Most state employee plans offer coverage that is not mandated of other insurance plans, nor is offered to those enrolled in state supported programs. For example, Iowa's law reads:
Requires state employee health care plans to provide coverage for the diagnosis and treatment of autism spectrum disorders for individuals under 21 years of age.
The diagnosis has to be made by an "appropriate" health care provider. No specific guidelines are offered in the Iowa law, nor are they offered by most states. At least two states' laws mention the "DSM" without specifying the Diagnostic and Statistical Manual Fourth Edition, Revised. I don't know if this means coverage will expand or contract when the DSM V is published. Personally, I have no problem with laws being vague as to the diagnosis source or basis, since "autism" is an evolving diagnosis. I'd rather leave the health care issues to doctors instead of lawyers and legislators.

Read the NCSL updates and follow the links to your individual state's laws. Also, be aware that many insurance policies are set by insurance commissioners and other regulators based on the laws passed by state legislatures. This means that you should contact an insurance expert in your state if you have questions about coverage. There are too many changes between 2011 and 2014 for any person to keep up with them. Also, if court challenges to the ACA are successful, expect states and insurers to reduce various types of coverage, including autism-related insurance coverage.

Personally, I have no idea what to expect between now and 2014 in the courts or at the federal level. Follow the NCSL page, though, and you'll at least be aware of what the laws are at any moment: http://www.ncsl.org/?tabid=18246

Tuesday, September 27, 2011

Dealing with Minor Disasters

I've managed pretty well on my own for the last few months, with some complications, but last night was too much for any one person.

For the third time, our basement area took on water. The first two were bad enough, but this was the result of a flash flood, with more than two inches of rain an hour. This morning, you can see the "water line" of debris around the lower level of the house, ranging from four to ten inches. It might be a bit deeper in other spots, but I wasn't going to measure with a ruler.

I spent the entire night using a wet/dry shop vac to remove water from the semi-finished living area of the basement. That's where we have stored boxes of our belongings and large items — like a computer, an entertainment center, my CD/DVD collections, etc. Plus, it is where my books and writings are. My writings include my journals from fourth grade until now. Photo albums, yearbooks, and holiday decorations are all in the basement. Our important documents, are there, too.

Because I've had either a cold or flu and now have bronchitis, I'm not in the best physical shape. I've lost five pounds in three weeks. Yet, there I was, trying my best to move boxes and remove water.

In the end, I couldn't stop all the water and I was in no shape to move large boxes up to the first floor. I tried — and ended up spilling the boxes I did lift.

This wasn't just our house. A nearby street buckled and washed away in sections. A bridge flooded, with people stuck in cars. Thankfully, the local rescue teams were able to retrieve people from the bridge.

I've never seen water like this. You can't stop water from washing away the driveway (which it did) or carrying your garbage can a few hundred yards from the house. Even a wooden walkway that connects our driveway to our backyard washed out of place and struck the house.

This was too much for any one person. I don't care if you are disabled or not, one person cannot handle a flood alone. The shop vac cannot remove that much water and few people can move wet boxes with ease. Trust me, wet boxes fall apart when lifted. I had to call my wife and begged her to take some family leave from work to come out and help me.

I'm overwhelmed with cleanup while also trying to do my job at the university. I'd already lost two weeks to illness before the flooding.

The house will need some serious repairs. We knew some problems would have to be fixed over time. Now, we don't have that time. The driveway has to be replaced, a tree removed, a bulging basement wall repaired, drain pipes replaced, and on and on. If I wasn't already sick from bronchitis, I'd feel sick just looking at the "to-do" list for the home repairs.

During the night, I forgot my keys during one of the water removal cycles. I had to bust in a door, breaking the door jam. My shoulder still hurts. It will be a cheap repair to the door, but I don't think my body will recover quickly. I was standing in two inches of water, shoes and socks soaking wet, and worried about making sure I unplugged the shop vac without getting electrocuted. There is a point at which you can't use an electric device in water and that was the point at which I found myself locked in the shop area.

We don't have flood insurance, yet, but I know we'll be getting it. We live on a hill, out of any flood zone, but clearly that doesn't matter.

My wife will be here tonight. We can start developing a recovery plan. I'm exhausted, though. I'd like to think I could have done more on my own, but sometimes it isn't about being disabled or limited in some way. There are times when nature is simply too much for any person alone.

Saturday, September 24, 2011

A Peek Inside Our Dysfunctional Community: The Thinking Person's Guide to Autism

Apparently being busy with moving, the new job, and severe bronchitis has spared me the annoyance of the ongoing conflicts within the autism "communities." I admit my interactions with some of the people involved in the latest kerfuffles have not been drama-free. I'm not radical enough for some advocates, while some parents have accused me of being too radical. Welcome to the autism community.

However, if you want some insights into the conflicts between adults with ASDs and parent advocates, I suggest you visit The Thinking Person's Guide to Autism. Read the following posts and the comments:

The Thinking Person's Guide to Autism: The Self-Advocate/Parent Dialogues

I concluded some years ago that the autism communities are dysfunctional, but that's not really news to anyone inside the communities. There are "trolls" in all communities, people searching for conflict and people unable to simply ignore comments and posts with which they disagree. We just have some particularly mean trolls — but that's life.

I'm not angry at Autism Speaks, the Autism Society, Generation Rescue, the Autistic Self-Advocacy Network, Aspies for Freedom, or any other group. I'm opposed to some groups, but I don't hate parents or autistics seeking help and support. The only people I am angry with are "doctors" and "experts" shilling snake oil or therapies I consider harmful. Just because I believe some people embrace flawed beliefs (and sometimes junk science), I understand the desire to seek answers.

I wish the parents would listen to the self-advocates. I wish the self-advocates could listen more closely to the parents of the most impaired autistics. I wish parents with ASDs had a greater voice in both communities, to serve as bridges. As an educator with disabilities, I know I wish my colleagues would listen to my first-hand experiences more closely.

I do not have "Autistic Pride" nor do I have any great bitterness about being me. I've written many times that I do not feel "blessed" with my physical disabilities, but I'm not bitter about them, either. Whatever I am today is the result of growing up with my limitations. I feel somewhat sorry for the parents and autistics who have sent me angry emails. They care too much about my opinions and those of other people.

When I wake up, it's usually with a cat or two next to me. That makes most mornings pretty good, even the painful ones. When my wife is with me, life is that much better. If I get a card from my sister or a call from my parents, the day is truly complete. My wife, my family, my pets. Not one of those important aspects of my life depends on my views of autism or disability.

Autism doesn't define me. "Autistic" is merely one small, very small, part of how some people describe me. Sadly, the "trolls" in the community are letting autism define them.

Friday, September 23, 2011

Blogging on Autism for Autistics, Parents, Educators, or...?

Today I was asked for whom do I write this blog. The individual asking said that I don't write much for autistics, and yet that should be my primary audience. So, was I writing for parents? And if so, which parents?

You'd imagine a writing instructor would have an "audience analysis" ready. Any good author is supposed to know his or her audience, we tell our students. I must have a target in mind when I write… right?

No.

I write whatever comes to mind. This is a blog, a personal reflection on daily life, and I don't pretend that it is a focused work with a consistent rhetorical purpose. Some days, it is a place where I write about science and research. Other days, it is where I record the way I feel about my wife, family, and pets. This blog isn't a planned literary work — it simply happens as it happens.

When I write, I'm not trying to offer my experiences as "the autistic experience" of life. I'm aware that I have limits, but I don't embrace them or celebrate them. I focus on my strengths and try to adapt around (or ignore) my weaknesses. You want to know what it is to be autistic? I can't tell you. I can tell you what is to be me, but even that is only from my perspective. I'm sure my mother and my wife have different perspectives than I do. I am not writing "THE" experience because I know there isn't one experience.

I have simple advice for autistics: you are not anyone else, so don't fall into the trap of embracing too many stereotypes. You are probably not Temple Grandin, Stephen Shore, or any of a dozen well known autistic writers and public speakers. You are not a character in a television show. You are not a checklist in the DSM. You are a person, no more or less likely to agree with me than most other people. I don't get to define you and neither does anyone else.

I have no clear idea of what parents and educators get from this blog, but many seem to read it and comment. I know I've offended plenty of parents with my writings and public statements over the last five years or so.

Parenting is about balance. I know that only as a teacher and a son, not as a parent myself, but I can tell you that I see too many children who were pushed like they were tiny adults and others who were coddled and protected like fine glassware. Sorry, but a child is neither an adult nor a fragile collectable. You have to balance expectations, while accepting that your child will get hurt emotionally and physically at some point in life. Protecting a child from life is impossible and trying to do so only shelters the child from reality.

When I write here, I admit that I fail — and I have had some spectacular failures. I often write so I can reflect on those failures and learn from them. I write for myself in those moments. I'm not writing to teach anyone other than myself. Today a student told me that writing about failure helps other people realize they aren't alone. I like that idea. Maybe it does help when I write that failed at something, but went right back to living.

If I could reach any audience, I'd like to reach educators. I have a lot I'd like to tell teachers and administrators. Some of it would be popular, some of what I would tell educators would be extremely unpopular. I'm more comfortable dealing with education issues because that's supposedly my "expertise" as a university professor and researcher. But, I didn't create this blog with teachers in mind.

I'm going to continue "just writing" on this blog. Most days, this blog is whatever comes to mind, and no planning is involved. If you want a specific topic, feel free to ask (there's a "Ask the Author" link in the menu).

Monday, September 19, 2011

Being Independent Stinks

August and September have been challenging months, yet they also demonstrate that I can live independently — at least as independently as most other working adults. In the last few months, I've had to deal with more disruption to my schedule and life than I thought I could handle. My wife has visited twice and we talk most nights, but for the most part I've had to settle into the new house and job on my own. I couldn't have done what I have without her support, yet that support has been from a distance.

Having to drive from Minnesota to Pennsylvania in a single day, right after a flight from Las Vegas to Minneapolis, was too much. I was exhausted and near my breaking point the first few days in Western PA. The movers arrived a few days later. I did my best to deal with the commotion and seemed to do okay, all things considered.

My wife's first visit was accompanied by J.C. getting ill. Her second visit ended with her visiting him at the pet hospital. He died only a few days after her visit. The loss of J.C. Kitty was horrible. Yet, somehow, I had to deal with it alone at the time. He couldn't wait for his mother, sadly, so we had to face the end together without her present.

I've had to deal with basement flooding (twice), having trees removed, getting the Jeep registered, obtaining my driver's license, attending formal campus events, new employee orientation, and all the other things a "normal" person has to face when moving for work.

I'm exhausted, definitely, but I have managed to not collapse.

Since Thursday, I've been sick. Not a little, sick, either, but sick enough that I lost another three pounds. I'm almost 190 pounds, down from a peak of 225 during my doctoral defense. I'd rather lose weight by exercising and eating healthier.

Even with being sick, I've still managed to medicate two cats each night. I've done pretty well, though I missed two entire days in bed. Getting up to care for the cats was about all I could do — but I did it because they need me.

Living independently means managing to do what has to be done, from grocery shopping to calling the plumber. It means mowing lawns and cutting fallen branches. Living alone means getting up when the alarms sounds, dressing up, and going to work on time. It means sharing my chicken breast with Alex and Misty — so I don't have to eat alone, at least.

I doubt most people would celebrate two months alone, going to work and managing a house. It isn't about intelligence or skills, it is about the emotional stress of being alone, without someone to fix my mistakes and tell me everything will be okay. I've met some of the smartest people in the world, and a few cannot live alone because they lose track of simple tasks, like buying food or doing laundry. Checklists and reminders only work if you aren't so focused that you forget to look at a calendar.

Doing okay on my own doesn't mean I like it. It would be much better if my wife could be here. I know the cats miss her, too. Still, at least she knows I can manage a basic routine alone. I have to make this work for another few months, and I will.

Personally, I'd rather not do things alone. Independence is nice, but life is better shared.

Tuesday, September 13, 2011

Twenty Years and We Are Here

For the first time in many, many years, things feel somewhat "right" in life. Not great, since I'm still dealing with the loss of J.C. Kitty and the stress of missing my wife until she can join us permanently. But, things are better than they have been in almost two decades.

My wife is the most important person in my life, and the last decade has been anything but fair and good to her. Our relationship imploded for a time, in no small part because doctors (of both the medical and mental health variety) had little clue how to address physical and neurological issues. For most of the time we've known each other, I've never felt like I deserved her as a friend, much less as a companion. I wanted her to be happy — and I doubted very much that I could give her the life she deserved.

We've lost a fair amount of time and money trying to earn enough to live. I dreamed of earning enough to "pay her back" for all she did. Instead, we went backwards. A computer store and a bookstore, with other ventures along the way, consumed most of her money, along with money from friends and family. My medical problems also consumed much of her income. I had various jobs, none of them lasting any significant time, and things were looking rather bleak before I finally decided I had to complete a graduate degree to start again.

I realize she could have been far more successful and secure without me holding her back. But, she stuck around even while I was lost and had no idea where or what I should be.

My master's degree was meant to be a path to teaching at the community college level. Somehow, I ended up applying to graduate schools while completing the master's thesis. When I was accepted to the University of Minnesota, I asked her marry me (again) and join me on this confusing journey. I don't know why she said yes, considering how lousy the last few years had been — but she agreed and we moved in the summer of 2006.

Moving to Minnesota seemed like the start of a new life. It didn't quite work out that way. The move to Minneapolis was a huge step and one I still don't know how to evaluate. It was a lousy five years, physically, for me. Without my wife, I probably wouldn't have survived in Minnesota. The university experience was miserable at times and I was exhausted by 2010. I simply wanted to return home to California or another Southwestern state. I wanted to return home, even though home hadn't been a great place for us.

Tonight, I realized I was now where I had hoped to be in 1991, before the computer store or any other misadventures. Since moving from California, we've both completed graduate degrees. I am teaching, which had been my plan back in 1991. We have a house (technically, we have two for now) with a large lot and plenty of room for our books. We have some security, finally, and a vision of what might be ahead of us.

Though it is twenty years later than planned, I can finally give her the life I had dreamed of providing.

No, things are not perfect. We have a house we need to sell. We lost J.C. right after this move. We are truly starting over, financially and emotionally. But I can see where we are heading and I'm confident things will be okay.

When did I realize things were better? When I was sitting at my old desk, with the desk lamp on and my journal open, and I started to write for the first time since Fido Bear passed away in 2007. Before Fido's death, I hadn't written anything in the journals since 2003. Sitting at my desk and writing felt familiar. It was what I had done throughout high school and into college. Yet, for some reason I hadn't written much of anything for myself over the last thirteen or so years.

In thirteen years, I hadn't sketched more than three or four pages. I had written fewer pages in that same time than I wrote in a single sixteen-week semester at USC. When sixteen weeks is more productive than thirteen years, something is definitely wrong. I've struggled, a lot, to regain my confidence and sense of purpose. Tonight, I felt like things were as they should be.

Minnesota never felt like home. I'm not even sure our apartment in California felt like home. This feels like home. It will be complete once my wife is here, but it is already a better life.

I cannot believe we really made it to this point. Wish we had made it a lot sooner, but here we are.

Sunday, September 11, 2011

Another Three Weeks

A couple of hours ago, I drove my wife to the airport. She's returning to our home in Minnesota for a few weeks. Her next visit will likely be at the end of September and last only two or three days. This move has been a challenge, especially as we maintain two houses until the previous one sells.

I don't mind being somewhat alone, and I definitely prefer to be alone in my office on campus when I'm working, but being without my wife is different. She's my guide and my companion. I don't like Minneapolis, but if she's there, that's where my thoughts are.

As I returned home from the airport, a storm rolled into the area with rain, lightning, and wind. It was dark and gloomy — pretty much how I felt on the way home.

Today was a day we remember both first responders and those called to serve in the months and years after September 11, 2001. I can't imagine being in the military and serving for months, even a year or more, away from my family. The families must also feel something like I do without my wife nearby: something is missing, a part of me. A year apart would be miserable.

Typing this, our newest family member, Misty Kitty, is sitting nearby. She lifts her head from time to time and checks to see that I'm nearby. She still hates it when she doesn't know where her people are. I'm glad she loves being with us, and I'm especially glad that she likes to be near me. Tonight, she'll get lots of hugs, as will the other furry kids.

My wife is working to help me get back on schedule. The kids will help me relax, which is scheduled several times throughout the day when I'm home. The schedule is on a little legal pad, sitting on my desk. A legal pad can't take her place while she's away, but it will be a reminder of how much she cares.

Wednesday, September 7, 2011

Sticking to the Familiar

My wife is visiting this week, which at least temporarily restores some familiar order to my daily routines. Even before her first visit, I'd already established some routines in and around our new home.

One of the "happy things" about the new home is that I can stick to five major roads for everything from getting to work to shopping for groceries. I don't want to learn more roads, and am in no hurry to memorize new paths to anywhere. I drive down an interstate expressway to work. The same expressway takes me to shopping centers or to the streets on which shopping is located.

I shop for groceries at two stores. In our previous residence, I preferred one store but shopped at several because cities are like that. Living in a rural area, there is one dedicated grocer and a Super Walmart within a few miles of our house. Those two are our choices and I'm content with that. I can memorize two store layouts and develop my routines.

There is one restaurant I really like. I've been there seven times. There's no impulse to try other places — I like it (good Mexican food) and don't know if I will like other places. The reason I went into the restaurant in the first place was that it resembled familiar family-owned restaurants back in California. It looked like the places that were part of my old routines.

Today we tried to go to an unfamiliar area in a nearby county. I didn't like the drive. I'm doubtful I will return often to this new area because the drive was stressful. I'd rather stick to the familiar, the "cookie cutter" strip centers along the interstate expressway that are within miles of the campus where I teach. Maybe when my wife is here, we can explore this other shopping area, but I won't be going alone.

I've done better after moving than I thought I would because I have found the familiar. I shop at the same stores I did in Minnesota and California. Target is Target. Staples is Staples. While I have fond memories of the local businesses of my youth, there is a reason chains have done well: the experience is predictable. McDonald's does well because people know it is roughly the same, restaurant to restaurant.

For me to try new things, I have to first be comfortable. In a year or two, I'm sure I'll experiment more locally. For now, I need my routines.

Thursday, September 1, 2011

Meet Misty

I'd like to introduce Misty.


Since moving, I've been shopping at a PetSmart location near the university. For that entire time (a month and a week or two), Misty has been in the adoption cages. Then, last Saturday, I noticed the employees had removed her tag and were sorting some paperwork in a large white three-ringed binder. I asked if someone had adopted Misty.

No. She had reached her limit with the Humane Society. Misty arrived in April and August was as long as they could give her.

Misty was so calm, quiet, and even "sad" looking that she didn't attract enough attention. She had been turned over to the shelter at the age of two and half, so she isn't a cute little blue-eyed kitten. But she is adorable. She is a beautiful cat, who simply needed a home.

Having had an elderly owner, according to the Humane Society, Misty was accustomed to relaxed, slow moving people. The "spunky" kittens around her in other cages would run up and stick out paws for attention. Misty simply looked "pouty" in the back of her cage. She didn't meow or purr or anything.



Somehow, I knew she was perfect for our household. Pumpkin Kitty and Alex have needed a calm, relaxed friend. Alex misses his brother and PK is so anxious that any calming influence has to be a good thing.

I adopted Misty because it was the right thing for all of us.

While on my path to this teaching post, we lost three of our beloved feline family members. Fido was lost to cancer. We lost Jordan, my little princess, to heart and organ failure. Sadly, J.C. passed away only weeks after the move and I still miss him every night.

Misty is extremely happy to have a new home. She follows me around the house and "head-butts" me for attention. Her little purr motor never stops. At night, she's taken to sleeping next to me. She adores being scratched and loves to play. She needed a person. I cannot imagine what four months in a small cage must have been like for her.

She's adapting quickly to the new house. She runs up and down the hallways and through rooms. It's a lot of space compared to a cage the size of a copier paper box.

This weekend, she gets to meet her new adoptive mom. I know they will love each other.