This was written by a friend and OCLB Teammate in Nevada, Deidre Hammon (mom to adult child with disabilities, Brianna Hammon) in response to the Dr. Phil segment in which it was discussed whether a parent has the right to legally euthanize his/her child because of a disability.  I found this so raw and powerful that I wanted to post it on my blog.  I will convey any comments to Deidre.

Parent Rights - and Wrongs:

I have learned over the years that parents are often encultured to messages of bigotry starting early, and we are sold the myth of cure, and other pernicious mythologies about disabilities by the very agencies that should be supporting us to understand  the scope of our children's disabilities, and to accept and celebrate our children for who they are: people with disabilities, bringing that much needed face of God to every environment they enter.

We, in our initial grief. Can be easily led astray to believing what culture says is true about people with disabilities, which is mostly negative, and deficits based.


And besides that, we're not disabled. I have learned over the years that there is stuff I don't get -and never will get- until I myself am disabled.


So while I always believe in a parent's love, I often find I have to lead them back past all the bigotry and mythology to where they can see through their children's eyes, THEN, from that perspective, I rely on their love to do the rest. And most of my best teachers have been adults with disabilities, so I have valuable insights into the perspective of people with disabilities. And sometimes, (God forgive me, even 29 years in) I am still wrong as a parent -as Brianna can easily attest to! 


Sometimes it may be important to second guess parents, to help them find their way back home to their perfect-just-as-they-are kid.


I really cannot even imagine the horrors at work in the soul of the woman who wants to lethally inject her children. Someone has led her very very far from home.

Honestly,

Deidre Hammon

IEP’S, FOOTBALL, AND THE IMPORTANCE OF COACHES

In my long-time role of parent volunteer (nationally and locally), people know and seem to like me. They certainly aren’t afraid of me – as I’ve discovered as a classroom volunteer at my kids’ schools…“no classroom presence” is the verdict.

In the courtroom – as opposed to the classroom  - I command more attention, of course. Being a lawyer does that. Ditto in the IEP meeting room.  People sit up and take notice. As they should. Things get done. Again, as they should.

But despite what people seem to think, I don’t spend all my time in a courtroom or in a school IEP conference room. To the contrary, I hardly EVER have to frequent these venues.  Why is that?

It’s because I view myself as a family’s legal coach, and the coach does not go out and play football.   The coach is critical to the team’s success – in the locker room, at the practices, and on the sidelines ready to jump in and give advice if needed – but the coach is not out there on the field. He/she doesn’t have to be – if he/she has done a good job, his/her players are ready to play as soon as they hit the field.

Parents are the quarterbacks. They make the tough decisions, and much of their family/team’s success rides on their shoulders.  Then there are the supporting players, important in their own right – the therapists, doctors, etc. – but the leader of the team is the parents, and their coach is the lawyer.

At least, this is true in my playbook.  Some lawyers (and lay advocates) may take a different approach, and that’s fine.  But what I’ve found through years of being a special ed mom (to three out of my four kids over the past 15 years and counting) – and through years of being a community volunteer – is that most families instinctively know that their goal is to have a smooth relationship with their child’s school; as famed special education attorney, Pete Wright, has said: think of your school relationship as a marriage without the possibility of divorce.  So, unless you are prepared to pull your child from public school (which, obviously, does happen sometimes), you need to keep the relationship between school and parents civil and professional. 

I have found that viewing myself as the family’s coach has allowed me to keep the costs – financial and emotional – as low as possible for the family and to preserve as much as possible a good working relationship between the family and the school.

As a special ed lawyer/mom/community volunteer, I’m here to help.  I’ve been where you are and I know what’s at stake.  It’s your child’s future.  Nothing matters more.  I know how to keep my eye on the prize – and as your child’s parents, I know you do too!  I’m not here to bully or intimidate; nor am I here to passively accept whatever the school offers.  I’m simply here to help. 

How can I - as a parent - help prevent restraint & seclusion in my local schools?  By speaking up!

Here's a sample email you can send to your local school board, principal, and superintendent educating them on the dangers of restraint & seclusion and the alternatives available to them.  If your child - or your child's classmate - has been restrained or secluded at school and you don't think it's right, then just let them know how you feel - there is power in numbers, so parents, please speak up!

SAMPLE EMAIL:

I write to you all as a concerned District ___ parent regarding what I view as a disturbing and financially inadvisable situation in our schools, namely, the use of restraint and seclusion of our children (especially those with disabilities). I would respectfully request that we seriously consider spending our limited funds on positive methods of behavior management rather than aversive techniques that are dangerous, abusive, and ineffective.

In my experience, I have found that for kids with disabilities, behavior is communication.  When students appear to be misbehaving or having a meltdown, they are usually in fact uncomfortable, bored, scared, or lacking in appropriate supports to engage meaningfully in the classroom content.  When misconstrued, often such behavior triggers restrictive interventions (such as holding/restraints or secluding/Time Out rooms – or whatever euphemism is currently in fashion) rather than positive supports designed to de-escalate the situation to allow the student to continue to participate in the general education environment.

In the mental health field, restraint and seclusion are considered a “failure of treatment.” I believe that similarly, in the education field, restraint and seclusion represent a “failure of education.” 

As the U.S. Substance Abuse and Mental Health Services Administration (www.samhsa.gov) has recognized, there is an excellent business case to be made against the use of restraint and seclusion (as opposed to positive behavior supports and interventions).  See The Business Case for Reducing and Eliminating Restraint and Seclusion http://store.samhsa.gov/product/SMA11-4632.  Moreover, there are viable alternatives to seclusion – see, e.g., the website of Dr. Laura Riffel (http://www.behaviordoctor.org , whose advice on alternatives to seclusion was recently published by LRP Publications, a school-based organization.  (I have pasted her LRP article at the end of this email.)

Equally important, positive behavior supports are research-based (unlike the use of restraints/seclusion) AND have been granted “most favorable intervention status” under federal and state law.  See Positive Behavior Support and the Law (http://www.pbis.org/school/pbis_and_the_law/default.aspx).  See also generally http://www.pbis.org and http://www.apbs.org for the strong research base underlying positive behavior approaches with this population.  In other words, both federal and state law require the consideration and favor the implementation of positive behavior supports in schools.

On the other hand, there are numerous risks to staff and children when restraints and seclusion are utilized.  For instance, children in seclusion have been known to urinate or defecate on themselves and/or to injure themselves in their desperate struggles to get out (a number of children have died while in seclusion).  This raises not only safety, but public health, concerns in the use of these rooms. 

Representative Gregg Harper (R-Mississippi) has recently authored an op-ed in strong opposition to the “barbaric” practices of restraint and seclusion in our public schools.  See http://www.rollcall.com/issues/57_134/Gregg_Harper_Restraint_Guidelines_Endanger_Children-214458-1.html?pos=oopih . 

The U.S. Department of Education has recently issued its own resource packet strongly discouraging the practices of restraint & seclusion, encouraging the use of positive behavior supports instead.  See http://www2.ed.gov/policy/seclusion/index.html.

Finally, I would direct your attention to the page on Our Children Left Behind’s website that collects information on the dangers of restraint, seclusion, and other aversive techniques to schools and staff.  http://www.ourchildrenleftbehind.com/restraint.htm.

Thank you for considering my views, and please do not hesitate to contact me to discuss this further. I can be reached at ___________.

Sincerely,

Recognize alternatives to seclusion

By Laura Riffel*

My team and I recently worked with a K-12 alternative school that used its seclusion room 47 times per day. Using data, we found that every incident occurred within 5 minutes of coming back from a high-energy transition, such as physical education or lunch.
Knowing heart rates go up prior to aggressive acts, we decided to try an experiment. We did these three things:

· Dimmed the lights by turning off the overhead and putting a lamp with a 60-watt bulb on the teacher's desk. (Fluorescent lights set off behavior in some students.)

· Played music with 60 beats per minute for three minutes (a resting heart rate).

· Put a thought-provoking question on the board. (For example: What is the square root of 16?) One month later, we looked at our data and we had only two students who exhibited aggressive behaviors. We put intensive behavior intervention plans in place for those students and their need for time in the seclusion room decreased. Students sometimes still chose to use the room to calm down, but they no longer had to be forced into the room.
Take these steps instead of relying on seclusion to manage student behavior:

1. Determine the antecedent: When are the behaviors showing up? There are always patterns to behavior. The triggers might be invisible to us at first, but they are usually there if we just look. These are some of the more common triggers we have found:

· Time of day.

· Day of the week.

· Certain subjects.

· Certain activities or work tasks. Day of the week.

· Certain subjects.

· Certain activities or work tasks.

· Boredom -- too much downtime.

· Transitions.

· Certain smells.

· Certain people being near or absent.

2. Replace the challenging behavior: The tantrum behavior has been learned and rewarded, so you have to decide what you want the student to do instead. You can't just say, "Be good." You have to be specific. You can teach this behavior with video self-modeling, which involves filming the student engaging in a replacement behavior. You can also use PowerPoint relationship narratives, which feature slides of a student exhibiting the appropriate behavior. Just remember it will take time. I believe about one month of intervention for every year a behavior has been in place is a good rule of thumb. I like to use the TIPP method: Teach the new behavior.

· Imprint the new behavior by modeling it.

· Practice the new behavior. What does it look like? What does it sound like? What does it feel like?

· Praise the new behavior. Use specific praise. Say more than, "Good job." Try, "Notice how you're sitting in your chair and raising your hand and waiting to be called on? That's exactly what we are looking for. Way to go!"

3. Consequence modification: How are you going to act differently? The biggest factor in changing student behavior is in changing our own behavior. In the alternative school I mentioned, staff totally changed how they did business. They lost three minutes of class time every time the students had a high-energy transition; however, they gained hours of academic time that were not lost to students leaving the room because of meltdowns. This is applied behavior analysis -- giving energy to the appropriate behavior and extinguishing the inappropriate behavior by not giving it any energy. If we spend our energy on giving students attention for their appropriate behaviors, we will see fewer students using inappropriate behaviors to get attention.

Because of all of the advances in technology, students get less and less face time. But this is exactly what you need to offer to reduce disruptions in the classroom. Research supports using these strategies when you greet students at the door each day:

Use eye contact.

· Talk to them about something personal, such as a new haircut or shirt.

· Use their name in a positive way, such as, "Great to see you today, John."

· Use a form of touch that school policy allows and students accept, such as a high five, fist bump, elbow bump, or pinkie swear.

See also:
· Address students' challenging behavior in intensive intervention program (March 6)

Learn more about the guide Dangerous Conduct by Students With Disabilities: Legal Guidelines for Appropriate Responses .

*For more stories and guidance on this issue, see the Restraint and Seclusion Roundup.

*Laura Riffel is a behavior consultant based in Overland Park, Kan.

May 2, 2012

Copyright 2012© LRP Publications

Form Over Substance?

Usually when people talk about elevating “form over substance,” they mean it as a put-down to form.  Procedures, it is thought, are inherently inferior to substance. But are they really?

At least in the special education context, I have not found that to be the case at all.  Procedures are king. Procedures rule.  Let me explain.

Love it or hate it (and most parent-side advocates hate it), the Supreme Court’s Rowley decision from the 1980s, which set the standard (a low one) for a free appropriate public education (FAPE) for students with disabilities, did get one thing right.  The Court recognized the critical importance of the law’s complex procedural protections for families (the “procedural safeguards” guaranteed to families under the federal Individuals with Disabilities Education Act and its state counterparts).

In a recent article written by a school district attorney (Miriam Freedman) published in The Atlantic magazine (http://www.theatlantic.com/national/archive/2012/04/4-common-sense-proposals-for-special-education-reform/256435/), the writer calls for less focus on procedural compliance by schools and more focus on substantive outcomes.  This is all well and good in theory (and I doubt anyone would disagree with this in theory), but in real life, the result would be an evisceration of parent protections in special education – with the end result being a worse, rather than a better, education for our students.

I think that’s why Section 504 – with its focus on substantive civil rights vs. procedural safeguards for parents – is so under-utilized and is in fact often ignored by schools (as anyone whose child has struggled with a 504 Plan but is being refused an IEP can attest). 

For better or worse, the procedural safeguards are really the only thing standing between families and oblivion in the special ed world.  No wonder school attorneys are so eager to obliterate those protections.