My Autism Insights

I found out earlier this week that an IEP (Individualized Educational Program) meeting had been scheduled for today and I was expected to be there.  Short notice aside, it occurred to me that since these meetings can happen at any time, today is as good a day as any to post some advice for getting through one of these joyous occasions.  And just to add a caveat, while I am by no means the Great and Powerful Oz of IEP meetings, I have been doing them for roughly five years, so I do know a little of what I write.  However, things will differ a bit from state to state and district to district.

What is this meeting for?

The IEP meeting is usually done when a student with special needs is coming into a school district, or at the end of a school year to review whether or not the student will require services for the following year.  If something comes up during the course of the year, a meeting can be called in order to make changes to the child’s plan.  My meeting today had to do with starting the process of getting physical therapy added to Gus’s program and also reviewing a request for a 1:1 aide.

Who will be there?

This can be the most daunting part of IEP meetings.  I remember the meeting we had just before Gus transitioned into Kindergarten.  There must have been about 15 people in the room - most of whom I had never seen before!  There can be any combination of teachers, assorted therapists, psychologists, administrators, committee chairs…there are lots of people, and you.  It’s probably more comfortable to walk out onto the pitcher’s mound at Yankee Stadium in your underwear, but it doesn’t have to be so threatening.  First, if both parents can be present at the meeting, it makes a BIG difference (unless the parents are at odds).  If not, bring someone with you - a family member, a friend, sometimes you may want an advocate or attorney if you anticipate that you may have serious trouble getting your child’s needs met.  It’s important to remember that regardless of how badly outnumbered you are, it’s essentially your meeting.  And you can have whomever you want in attendance.

This brings up another point.  Sometimes, the people you want at your meeting may not have been invited by the district, and you’ll have to invite them yourself.  I learned this one year when Gus’s speech therapist sent a report saying she wanted to remove speech therapy.  I had to go find her and find out why she would recommend that (she thought the district would deny it) and then make her case for her.  Why?  Because I hadn’t invited her and no one told me that I had to invite her.  So, if there is a therapist or counselor you want in attendance, write a letter to the district in advance and tell them exactly who you would like to see there.  Then let that person know yourself.

In my home state of NY, each CSE (Committee for Special Education) is supposed to have a parent representative, and that person (often volunteers) is supposed to be at the CSE meeting as well.  In five years, I have never once seen this person and I am usually asked to sign a waiver so that the meeting can continue without the rep.  Just be aware, that you might have the right to have another parent who has navigated the system present and you might be able to postpone the meeting, although that might be shooting yourself in the foot.

Be prepared!

I may sound here like I’m recommending that you prepare as if you are getting ready for a major battle.  Well, you kind of are.  We’d like to think that everyone is going to have our child’s needs in mind, and while that’s partially true, everyone present in that meeting will also have their own agenda and their own restrictions.  School districts have federal, state and budgetary restrictions and they have to consider all the other children vying for the same limited resources as your child is.  Teachers and therapists get stuck in the middle trying to please parents and districts, and if they care at all for your child, they’re trying to do what’s best for him as well.  You are strictly concerned with your child’s needs.  Many times, the balance of power will shift because that middle group is like a group of swing voters.  My strategy has usually been to try as much as possible to have a strong partnership with Gus’s teachers.  Then when we walk into the meetings (I make sure all his related service providers are present), we can present a united front.  The strategy has served me well several times.

What if you are in conflict with the school staff, or even worse, in conflict with the district AND the school staff? Make sure you know exactly what your rights are, and you’d probably do well to have an advocate.  The last thing you want is to get railroaded, and as much as I hate to say it, I’ve seen it happen to people.

Two resources that may be helpful are the U.S. Department of Education’s Individuals with Disabilities Education Act website.  You might also contact the department of education for your state, and they will probably have some kind of pamphlet about your rights as the parent of a special needs child.

Once you know what your rights are and where everyone stands, you’ll also want to have a clear idea of what options are available to your child.  What programs are out there?  What services are you interested in?  There’s no guarantee you’ll get everything you ask for, but if you don’t even know what to ask for, you’re at a great disadvantage.

Now, some districts can be funny about letting parents look at programs before the IEP meeting.  I think this is insane, tantamount to asking someone to sit down to a real estate closing without ever seeing the house they’re buying.  Our old district had such a policy.  I ignored it.  The chairperson was very displeased with the fact that I came into the meeting with a program in mind for my child (she was more upset with the school reps than with me) but eventually, we got him into the school.  Don’t do it lightly because you don’t want to be overly antagonistic, but sometimes you may decide that bending the rules is necessary.  You’d get no arguments from me.

There’s an awful lot more to cover on this subject, but this should at least get you started on your road to preparing for an IEP meeting.  If any of my readers can think of any questions or aspects of the process that I should cover more in depth, I’m completely open to your thoughts.

By the way, our meeting today went better than expected.  Gus will probably be approved for PT, but has so far been denied for a 1:1 aide.  But the district has suggested that a behavioral specialist evaluate the environment to see what may be triggering some of the issues he’s having.  While that may not work in our favor, I’m still optimistic at this point.  Oh, and one more point:

Be flexible!

You have to know when to stand your ground in an IEP meeting, like when the district is trying to cut services to your child that you know are clearly needed.  But sometimes, the district might come up with an alternative that you hadn’t considered, and they’re not always wrong.  So go into your meeting with confidence, and know what your agenda is, but then be open to other ideas.  You don’t have to make any decisions on the spot, so there’s no harm in listening and giving every suggestion fair consideration.

Have a great weekend, and please leave a comment if I can answer any specific questions!

Or lack of policy, more accurately.

Governor Palin gave a speech in Pittsburgh today.  I’m scouring the Internet, but so far have been unable to find video of the speech, but I have found some information , including a transcript of the speech. After reading it, I still don’t see anything new or particularly substantial about her plans, and I find some of her words contradictory to her past actions.

She did mention fully funding IDEA - great, only 11 days before the election and about a year after Senator Obama mentioned his intention to do so.  She talks about school choice for students with special needs, but some states already provide at least some level of choice.  Expanding that would certainly be a nice idea, but with the spending freeze that Senator McCain called for during the debates, where is the funding coming from?  Governor Palin claims that by reallocating funds already in the budget it can be done, but she neglects to give concrete information as to how.

In a Chicago Tribune article, quoted at Autismvox , her plans apparently include boosting early childhood funding until age 3, but what is supposed to happen to those children after age 3?

A couple of other issues are distressing.  First, she claimed that the special education budget in Alaska would have been tripled by 2011, but a big chunk of that funding increase is for a program called the Alaska Youth Challenge Academy, a boot camp for dropouts with behavioral issues.  Autism, Down’s Syndrome, Cerebral Palsy, ADHD…none of these, nor a host of other special needs, are ‘behavioral issues,’ so where is the funding for those students who wouldn’t be served by being in a boot camp?  When given the opportunity to advocate for individuals with special needs in Colorado, she opposed an amendment that would raise funds for those waiting for services - about 12000 people.

Governor Palin got in a dig at the Obama campaign, and her digs have been nothing but misrepresentations and double standards up to this point, by saying that his tax plan would tax trusts that parents establish for their special needs children, which is inaccurate.  As one commenter on the CBS News blog said:

“Sure, any special needs individual who is lucky enough to have a NET EARNING of $250000 per year in INTEREST FROM TRUST FUND will be affected a bit. We are talking about trust funds well above $5.000000 here. How many kids will be affected, I wonder? I”d love to see statistics on that.

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Posted by odnarusalka”Governor Palin fails to mention that the McCain-Palin health plan would allow insurers to deny coverage to those with pre-existing conditions.  Finally, Governor Palin spoke about the fact that children with disabilites grow up and that there needs to be support for them as adults as well.  Yet, she has yet to act on Maria Shriver’s call to Governors to employ disabled adults, and John McCain opposed the Community Choice Act, as mentioned in Becky Blitch’s blog.  So once again, the sound bites sound interesting but there doesn’t seem like there is much in the way of specifics, action, accuracy or truth where the Governor is concerned.  If this was her Hail Mary play, she seems to have just missed the goal.

I think first and foremost, I’m thankful that last night was the last presidential debate.  I’ve had enough of hearing the same thing over and over, and I’m really tired of McCain’s angry sniping.  Anyway, my thankfulness:

1. I’m glad someone FINALLY talked about special needs families and that Obama came out and said he wants to fully fund IDEA.  And for all Sarah Palin’s assertions that she would fight for families with special needs, her state seems to be a bit behind the times in terms of providing support.  Also, I was a bit disturbed that McCain seemed more focused on finding a cause for autism than dealing with the present lack of support for so many individuals.  He mentioned that we shouldn’t just ‘throw more money at the problems with schools.

2. I am thankful for the existence of Roe v. Wade and more than a little offended at McCain’s characterization as people who are pro-choice as being pro-abortion.  I don’t know if there is really anyone who is pro-abortion (and if there are those folks, they are in an incredibly small minority).  I mean get real - no one wants to just go wantonly killing unborn babies.  But there have to be options available when circumstances dictate.  You cannot mandate a person’s body.  And how dare he belittle the health of a mother as a valid concern?!

3. I am thankful that Obama finally mentioned the real cost of health care in response to McCain’s $5000 refund.  That would be great if you could actually get a decent health plan for that much, but according to the National Coalition on Healthcare , the annual premium on a family plan averages around $12,000.  Quite frankly, I don’t have$7 grand to dish out so that my kids can go to the doctor, especially since one of them sees specialists several times a year.  And McCain keeps talking about competition between states - how does that help?  Does he really expect people to travel to other states for health coverage?  Our current health plan is based in another county.  Now, we have decent coverage, but most of the doctors inthe network plan are in the county where the plan is based.  We can go out of network, but the cost is prohibitive.  So, that means I have to travel an hour to go to the doctor.  Guess what - I don’t go to the doctor very often.  My primary doctor is now relatively local, but my husband’s is not.  So when he injured himself and couldn’t drive an hour, that was a problem.  Now, that’s within the same state.  How are people supposed to manage that if they have to travel out of state to receive certain benefits?  And if anyone thinks insurance agencies won’t do that, please guess again.  As it is, we’re traveling an hour to see Gus’s specialist (Pediatric Developmental Specialist) because we, in 2.5 years of living here, haven’t found a local specialist who takes our plan.

4. I am thankful that the debate was not more eventful than it was because I wasn’t tempted to stay up afterward.  I got a decent night’s sleep for a change!  And now that Gus is feeling better, he slept to a good time this morning too, which hopefully means a good day for him.

I hope my views haven’t offended anyone, and I’d love for you to comment withyour own gratitude!  Look at the bright side, in just over 2 weeks, you probably won’t have to read any more about politics from this mom.  Have a great Thursday!

AP Photo by Charles Dharapak - notice how McCain Still refuses to look at Obama!

My decision was not swayed after watching last night’s debate, but I gained a bit of insight into John McCain that was a bit disturbing.  I am even more concerned than ever about that man getting into the top office of this country for two reasons.

Although the debate was supposed to be about foreign policy, there was no way to avoid at least some discussion of our domestic economy.  When pressed on the issue of what would have to be foregone from his plans in light of the proposed bailout, John McCain’s response was that there should be a freeze on spending except for veterans, the military, and institutions like Medicare.  No mention whatsoever about people with special needs or children or pretty much anyone else in the country in need of support.  One reason this bothers me is that his running mate vowed to make families of people with special needs a priority.  Did McCain not get her memo?

I look at his reaction as having one of two causes.  Either it was an emotional reaction and he didn’t really mean it as drastically as he made it sound, or he totally meant it and never intended to support individuals with special needs in the first place.  Whichever way you look at it, it’s a problem.

Let’s say he was just experiencing a knee-jerk moment - it happens to the best of us under pressure, right?  That doesn’t make it the best way to deal with a situation.  His blanket spending freeze would be akin to me saying to my family, “Okay, we’re spending too much in this house, so going forward, that’s it - no more spending!”

“But Mommy, what about food?”

“Start rationing out those hot dogs and suck it up!”

Not the most practical solution.  And while it’s a big enough mistake for me to have those kids of periodic emotional overreactions with my family, it’s way worse for the leader of a country to not be able to hold himself in check, take a breath, and make a more rational decision.

Now suppose he wasn’t being emotional and overreacting.  I’m not sure if IDEA (Individuals with Disabilities Education Act) funding falls into the same category as Medicare.  If not, without that funding, it will be even harder to get services for our special needs children than it already is.  That’s not looking out for special needs.  That’s kicking us right in the butt.  Clearly this is not an issue of particular value to him.

My other major concern about McCain’s performance last night was the fact that he didn’t look at Senator Obama once during the entire 90 minutes.  As anyone with a child with autism knows, lack of eye contact is one of the first markers in diagnosing the condition, so I know a bit about it after seven years.  Not only did he refuse to make eye contact, he wouldn’t even look in Obama’s direction.  His body language was rude, juvenile, dismissive, angry, and completely inappropriate for someone wanting to lead a nation.   My five year old refuses to look at someone when she’s angry at them.  I would not put her in the president’s office to deal with foreign leaders.  If he can’t bring himself to look at his opponent during a debate, how the heck is he going to conduct himself with other world leaders?  I read a great post the other day about eye contact in public speaking at the Communication Exchange .  I’m curious to see how Patricia reacts to the debate.

So, I am now convinced more than ever that if McCain is elected, support for individuals with special needs is going to dry up despite a promise to the contrary, and the security of the country is going to be even shakier than ever.  But that’s just me.  Maybe I just don’t really understand, like McCain repeatedly tried to convince us Obama doesn’t.  I think McCain’s the one who lacks understanding.  Your thoughts?