Functional Goals in IEPs

If you ask parents of children with disabilities what they want for their children in the special education setting, you discover that, by and large, they want what parents of typically-abled children want.  They want the best for their child.  Whether that relates to the attention to solve complicated math problems or the coping skills to tolerate a crowded gymnasium during an assembly, most parents of children with disabilities have at least one desire in common.  They want their child to develop the skills to function well in society.  Parents want their children to make friends, to understand money, to communicate effectively in society, and to understand mass transit.

Fortunately, functional goals are covered by IDEA.  20 USC Section 1414.  34 CFR  Section 300.307.  The commentary to IDEA provides a great deal of guidance, particularly in describing  “functional” goals as those referring “to skills or activities that are not considered academic or related to a child’s academic achievement.”  Rather, functional goals are those within the “context of routine activities of everyday living.”   Such goals are to be measured using evaluation procedures that meet the same stands are the other evaluation standards contained in the law.  Commentary in the Federal Register, page 46661.

The federal law therefor very clearly and practically supports the inclusion of functional goals in a student’s IEP.  After all, school is supposed to prepare students – all students- for life.  Isn’t life academic and functional?

How does a parent or student advocate for such addition to an IEP?  Consider the end game.  In writing a future planning statement, parents should include goals for the year, but I find it important to also include some life-long goals.  The goals for adulthood will set the stage and a plan for the school-aged years.  Students considering post-secondary opportunities need social skills, independence, study skill development, and memorization strategies.  Students heading to trade school may need fine motor practice, transportation ideas, or business management training. Once parents know where they are heading, they can develop a roadmap for the future.

Parents should then consider benchmarks that should be met in order to reach those adult-oriented goals.

Parents should also boil the list of suggested functional goals to one or two ideal goals.  Once met, such goals can be revised, teased our further, or supplanted with new goals.  Having a roadmap with adult-oriented goals will help parents think about annual goals and benchmarks.

Another consideration is build upon what is currently working at school.  If a school has a wonderful peer-mentoring program, and the student needs to work on independence, perhaps a peer mentor could participate in mock haircuts, grocery store trips, and bus rides, focusing on the communication and interaction necessary to succeed in those everyday tasks.  Similarly, if a school offers coffee in its cafeteria in the mornings, perhaps the same student could get extended school day services for social skill development during morning coffee with peers.

Because every child is unique, it is obviously very important to consider the goals of the individual student and his or her family and to develop unique, creative ways to facilitate both the academic and functional goals of the child in the school setting.

“Fair” is What You Pay to Get on the Bus

I found myself in the midst of a conversation about fairness this week.  Why do the other two schools have free dinner at their Back to School Night, and ours doesn’t?  I’m sure that there are a million practical reasons for the difference… our school is under construction, our school is too small to house that many families for a buffet or carry-out style dinner, such an event requires a ton of volunteer work and money/ fund-raising, nobody has ever considered changing status quo because of its prior success, etc.   

The thought, though, gave me pause.  Fairness.  What in the world is fairness?  As a divorce attorney, I preach about avoiding the word “fair.”  Kentucky’s dissolution statutes reference equity rather than equality, and I’ve never heard an attorney reasonably argue about fairness.  It’s impossible to be “fair” in dividing parents’ time with their children and in dividing a marriage’s assets.  Equitable?  Sure.  Fair?  What do ya mean?  Fair to you is far different than fair to me.  I might like retirement income, and you might want cash now.  I might like to do homework with children, and you might crave lazy weekend mornings with them.  And because of my work schedule, I might need a certain weeknight “off,” but if you take that night, it might mean that you miss your weekly tennis clinic, poker night, or bowling league.  Fair? 

As a mom of a child with special education needs, I often find myself considering philosophical thoughts in light of my own child’s educational needs.  Jack is on an individual education plan.  Individual.  Just for him.  Just about him.  To help him learn in ways that are tailored to him.  The one and only Hurricane Jack Barlow.  Sweet.  Fair?   He gets his very own teacher’s assistant, and the other students have to find their way alone.  He has some cool supports, like wiggle seats and fidget toys, to help him stay grounded and focused, while his typical peers can only fidget with their tags and whatever they find in the classroom.  Fair?  He may get to chill in the resource room for a few minutes while the other children do crafts, have free time, or work on their academics.  Fair? 

 

On the flipside, how in the heck would you like having an adult with you all the time?  And you know how you feel at a casino?  That’s how Jack feels all the time.  The wiggle seats and fidget toys help, but the kid is as distractable as they get.  And going to the resource room means leaving your friends, curious about what they’re doing, every single day.  Twice a day in Jack’s case.  Fair?  Who cares?  Equitable?  I suppose.  More importantly, does it work for us?  Absolutely!  Does Jack’s school support Jack’s needs and the way that Jack learns and interacts with his peers and teachers?  You betcha! 

Fair doesn’t mean that we all get the same darn thing.  Shouldn’t we get what works for us and what helps to make us successful?  After all, we are all individuals.  We learn differently, speak differently, feel differently, and love differently.  If we expect everything to be the same, we miss the opportunity to respect differences and to celebrate them.  If we expect everything to be the same, we miss variety, a concept from which there is so much to learn.  At our house we choose to celebrate differences and sameness and just about anything else anybody brings to the table.  As I heard someone tell Pete Wright, special education attorney and author, “Fair (fare) is what you pay to get on the bus!”

Leaving My Mark

I found myself driving through the beautiful hills of West Virginia two weeks ago.  Zac Brown blaring, sunroof open, an empty backseat behind me, and a clear mind provided eight hours of inspiration.

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“I’ve been thinking about the mark That I’ll be leaving Been looking for a truth I can believe in I got everything I need Let this heart be my guide In love, in music, in life.” – Zac Brown Band, Remedy

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Having just celebrated the ten-year anniversary of my law school graduation, I had indeed been looking for the mark that my practice and my career would leave.  Funny how life takes you down a bumpy, terrible, pot-hole-rich road, and that road intersects with brand-spanking-new blacktop.   As I-40 lead me to a conference on special education law at the College of William & Mary Law School, I reflected on that darn gravel road and planned my trip down the newly paved one.

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I grew up wanting to be a teacher, tried my hat at it, loved it, but found myself wanting more.  So, I went to law school.  I wrote my application essay on bringing people together, facing conflict head-on, and advocating for families from a global perspective.  Those concepts guided me to study mediation and advocacy strategies in school and to develop a strong family law presence in my private practice.

Then, I had Jack.  Sweet, hard-working, insanely crazy, sensory seeking, people gathering, hilariously tiring Jack.  And then Jack went to school.  Friend yielding, curriculum teaching, routine establishing, leadership housing amazing school.  And Jack got an IEP.  And boxes and drop-down menus and accommodations and parent rights and a bunch of tiny words on a bunch (and I mean a bunch) of papers.  And I figured it out.  I read and read and read and read and continued thinking, “I was a teacher.  How did I not learn this” and I read some more.  And then I realized something.  I know this stuff.  I know special education law.  And I like it.  And I like helping people.

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Wait a minute.  I know special education law.  And I know school.  And I know Jack.  And I can learn other children.  And I know advocacy.  And I like creative thinking.  And I love helping people come together to reach agreements.  And I’m in this practice development phrase of my career… hey, why don’t I learn about special education advocacy and law?

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So, I hopped on the AA Highway, cranked up my Zac Brown, and let my heart guide me to a week-long training on special education law.  And so, it is with great excitement that I announce that we are ready to open our doors to families needing special education legal services.  Please stay tuned to more posts about this practice area.

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Happy Fathers’ Day

KJMWorking with my dad is something I’d never take for granted, and while we’re scarily similar in personality, we compliment one another perfectly professionally.  Dad is an old school litigator, committed to zealous representation and identifying with clients’ positions.  I am a “retired” teacher that sees the whole picture and couch clients’ views against what the other side might be thinking and feeling.  When Dad wants to put a stamp on something, I scan it for him.  When I want to look up a statute, Dad recites it from memory.  A couple of months ago, my brother and I were texting back and forth about a gift idea for Dad, and we got on the topic of Dad’s Kurtie-isms, his mantras.  My brother started thinking up some marketing ideas for the office.  Tell us what you think…  Kurtie-isms with a Meier & Barlow Catchphrase thrown in!

Call us, and we’ll attack your legal problem in a New York Minute!

Repetition is the Mother of all Studies, but that’s not how we bill!

Respect Your Mother– Get a Will!

Don’t Make a Career out of legal work- we already have!

An Automobile is Not a Toy– but if you get hurt in one, call us!

We Haven’t Seen You in a Month of Sundays– Call us for your legal work!

We’ll try to remember your name, but just in case, we’ll call you Bwob, Margaret, or George.

To the only guy that names the furnace, vacuum cleaner, and car top carrier; the guy that cleans the bottom of the boat every weekend; the guy that coordinates with the school principal to make sure his grandson’s teacher’s name is the fictitious Mrs. McGillicutty every year; the guy that Puts His Powers to whatever you need and can accomplish anything; the guy that wanted to name me Petuka after Tony Perez’s wife – to our most crazy Kurtie – Happy Father’s Day.   You might have moved down to my #2 spot on 4/10/07 and to my #3 spot on 7/4/10, but you’re still my favorite Daddio in the land!  We love your One of A Kindedness and wish you a year of Power to the People.  Truly Nolan!

Start Thinking About an Estate Plan

Developing an estate plan is the best intangible gift you can give your family, but the thought of doing so is not super glamorous.  Very few people wake up in the morning and says, “I should start thinking about my estate plan today.”

You know how you’ll never be inspired to work out, but if you actually put on your gym clothes and gym shoes, you are more likely to make your way to the gym?  Try the same approach with your estate plan.  Try making the following decisions and taking the following actions.  Consider that to be equivalent to tying up your running shoes.  It may inspire you to call an attorney the following week and to finally start drafting your estate planning documents!

Decisions About Your Children:

  • If your children are minors, who will make day-to-day decisions for them in your absence?
  • What is important to your family in the event of your death? Where will the children live? Who will care for them? Where will they go to school? What long-term and short-term goals and mandates do you have for your family?
  • Who will make financial decisions for them? Will that be the same person as the day-to-day decision-maker, or do you desire a system of checks and balances?
  • Do you want your children to inherit financial assets immediately on your death, or do you want them to get chunks of assets at certain ages?

Decisions About Your Assets:

  • What are your assets currently? Start by making a list of what you own. Think about real property, personal property, household goods, valuables, bank accounts and other deposits, investments, stocks pension and retirement benefits, rents, accounts receivable, and other property.
  • What are your debts currently? Think about mortgages, loans, monthly bills, medical bills, etc.
  • Do your assets have beneficiary provisions, and are they up-to-date?
  • Are there assets that could have beneficiary provisions that do not?
  • How would you like your assets to be divided during your life and/ or at your death?
  • Which person/people would you like to administer your estate as Executrix/ Administrator/ Trustee? Which decisions would you like him/her/them to make?

Decisions about Your Healthcare:

  • Who would you like to make healthcare decisions for you if you are incapable of doing same for yourself? It is smart to consider an alternate, as well.
  • Would you want life support or other life-sustaining measures if you were in a terminal condition?

Silver Lining

I broke four vertebrae in my back in a waverunner explosion when I was fifteen.  Ever the realist, my mom rolled over from her hospital cot on day two of my (our) six-day hospital stay and said, “You have two choices.  You can be a victim, or your can be a survivor.  You’ve got every right to be mad that this happened to you, but you can also learn a whole lot from this experience.”  At fifteen (Heck, who am I kidding? At birth) I was already a ridiculously optimistic, gregarious, confident, competitive young lady, and her epiphany didn’t take long to take effect in my soul.

I decided – on June 27, 1993- to be a survivor.  To choose happy.  To choose to learn.  To be stronger.  To rock out this new chapter.

It’s not all that hard.  It’s just about a change of perspective.  So, while I spent most of that summer flat on my back in my bed, I chose to focus on the fact that my amazingly trusting doctor let me go home to recover and that I had such amazing friends that brought the fun to me.  And pain was horrible, but the good news was that the medicine also made me tired, and when I slept, I didn’t really feel the pain.  And even though I couldn’t stand up for the whole cookie baking experience for a few years after my accident, that meant my parents had to do my dishes!  The silver lining kept appearing, and after a while, I didn’t have to look for it.

Deliberate happiness.  It’s not an accident.  It’s a choice.  And it grows on you.  And with you.  The silver lining takes root and grows into a fire.  A fire to inspire others, to support people in hard times, to evolve, and to effect change.

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So, when my husband was holding our four-minute-old infant in our OR on July 4, 2010, and the doctor said, “I think he has the facial characteristics of a child with Down syndrome,” my natural instinct was to say, “Let me see… I agree.  Okay, what do we do next?”  Bypassing victim status, I sailed right into the survivor mode I’d been honing since 1993 and knew I’d rock that sweet baby out of the park.  What complete, indescribable joy our Jackman has brought us!DSC_0219

And when my husband’s doctor ordered an MRI with contrast, suspecting a mass, and delivered the news of a malignant tumor a few days later, I immediately asked for a CD of the image and started networking to find the best doc around.  What pride we have in the Cleveland Clinic, our doctor, and our friends that led us there!  And can you imagine how wonderful we feel every year when the doctor says he’s still cancer free?

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I interact professionally with a lot of people that are facing difficult, stressful situations.  Believe me – I know life isn’t all sunshine and rainbows.  That’s not the point.

While it feels a lot better to put on my survivor hat and to go on rainbow hunts, the worry and angst still find their way to my heart.  When they come a knocking, I listen, cry, scream, walk miles and miles, and pray.  And you know what? Eventually, I find that all of that hurt yields even more joy, because somehow when you know how badly something can hurt, you find a way to celebrate minor details.  And I’ve found that my clients and friends that lean into the joy find it, too.

The point is to take life experiences – the happy, the challenging, the downright unfair, the motivating – to gather them all up in a huge mixing bowl (if you need to buy one, I suggest yellow), mush them together, taking the time you need to fully incorporate all of your new ingredients, and to gain your own perspective from each of them.  And then, if you want extra credit, to remember that every other person out there has his or her own experiences that yield their own perspectives.

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The next time life gives you a dose of Anything Can Happen, consider that survivor hat (or earphones as the case may be).  It’s pretty comfortable.

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Custody and Parenting Time

Do you think you have or want 50/50 custody or sole custody?  What does that mean to you?  Many people mistake custody and parenting time, and the difference is very important.  Custody, very simply, involves decision-making; while parenting time (also sometimes still called visitation) involves the time a parent spends with his or her children.

 

Kentucky’s Supreme Court took a close look at the language we use in describing decision making and parenting in 2008 when it considered a case called Pennington v. Marcum.  The case primarily dealt with a parent that wanted to relocate, but the Court spent a lot of time describing the evolution of custody and parenting time in Kentucky.

 

The Court relied on a legal dictionary to define custody as the “care, control, and maintenance” of the children and described that while joint decision-making/ joint custody is not preferred by courts, it is certainly the most prevalent custodial arrangement in Kentucky.  Under this model the parents are both involved with and responsible for the children at all times, and they must consult with one another in jointly making decisions for the children.

On the other hand, when a parent has sole custody, he or she can make decisions for and about the children without consulting with the other parent.  He or she can act unilaterally.

 

Of course, as families change and parenting roles change, the courts have become more flexible, as well.  Therefore, there are many custodial arrangements that blend joint decision-making and sole decision-making.  For example, the parents may agree or the order may read that the mother can decide where the child goes to school, the father can make all medical decision, and the parties must agree on all other decisions.  Often parties will make a few custodial choices in advance.  That is, they may agree on a school system, a pediatrician, or a religion; and they may agree on guidelines for making decisions regarding which extracurricular activities the children may do or what expenses will be reasonable for the children.  The Pennington Court calls this custody “shared custody,” although that term has not been prevalent in my own practice.

 

By contrast, parenting time, describes the time parents spend with their children.  Because families all have different interests, schedules, and dynamics, parenting time schedules vary greatly from family to family.  A family that has joint custody does not have to equally divide the children’s time between parents, and likewise a family with a sole custody arrangement does not have to have the parenting time schedule of the 1980s in which the children visit with their non-custodial parent on Wednesdays and every other weekend.  Rather, families and courts alike tend to structure the time the children spend with their parents based on each particular family’s needs.  For example, parents with non-traditional or changing work schedules (police officers, nurses, union workers, retail employees) may have rules about scheduling parenting time around their schedules rather than set days.  Children with special needs or sensitivities may need extra time to transition to a new living arrangments, so a slower transition may be scheduled.

Practical Tip: Use your Phone’s Camera for Record-Keeping

My grandma was one of the coolest ladies ever. She was practical, witty, efficient, charming, and yet still somehow so warm and inviting.  I’m certain I don’t emulate her characteristics with as much grace as she had, but she, my mom, and my aunts are my standard.  It’s therefore no surprise that I preach practicality and efficiency daily in my office.

As I counsel my clients, I keep mental lists of their practical questions.  Where do I keep my living will?  Should I tell my children that I have a final power of attorney or just keep it in case of emergency?  How do people store all of this paperwork?  Sometimes practicality strikes, and I have a unique and decent idea… in this case, use your phone.

I have no idea how to operate half of the apps that came on my phone, and I have very little interest in adding new apps, but I sure know how to use the camera, and that camera can be very useful for practical document storage. How many times have you been pulled over and haven’t had your proof of insurance in your glovebox? What if you’ve left your wallet in your diaperbag for a routine doctor’s appointment? Make use of your phone’s camera to store the following information in your camera roll for convenience:

1. Proof of car insurance: You get new cards year after year, and it’s hard to keep up with them. The police always want to see them when they pull you over. If you can’t find the original card, a picture substitute is better than nothing!

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2. Driver’s license: Having a photo of your license is helpful in circumstances other than just traffic stops. You sometimes need your driver’s license number on applications, you may need to know the expiration date, and the picture may help identify you in case of an emergency.

3. License plate: How many times have you parked at a public building, walked all the way in to the building to apply for the parking pass, and had to walk all the way back for your license plate number?! Taking a picture will save you a lot of trips! Plus, if you have multiple cars, you may need the numbers on a car that is at home.plate

4. Living Wills, Health Care Powers of Attorney, HIPAA Authorizations: These documents are only good if you can tender them to someone. If you are in an accident, and your health care delegate or attorney in fact arrives at the hospital with no paperwork, that person will not have access to you or your care until he or she can supply the documentation. If it is on your phone, there’s a lesser chance of delay. As an aside, you can also file the paperwork at the hospital in advance. Simply go to your local hospital’s registration desk and ask them to scan your estate planning documents into your file.

5. Health insurance cards: If you have a photo of the front and back of your card, you’ll be sure to always have this information handy.

6. Your medicine bottles: Every doctor you see needs an updated list of prescriptions you take at every visit. Rather than carrying that list in your wallet (or in addition to doing that), snap a picture of each box and bottle so that you know the dosage, the date the last prescription was filled, the pharmacy’s contact information, and the like.

7. Business cards for your doctors, investment advisers, accountants, attorneys, and other professionals: Snapping a picture is way less work that entering them into your contacts, and it’s lighter than carrying the business cards in your wallet.

8.  Your Child’s Growth Chart Information: When I leave the pediatrician’s office, I always snap a photo of the print out that contains my children’s current height and weight.  That way I always know it when asked by other doctors and pharmacists.

Do you have a picture of anything in your phone for future reference?

 

Why Reason Respect and Grace?

(Hi, I’m Ashley Barlow, Mom, Advocate, Advocate for People with Different Abilities, Optimist. I run a law practice in Fort Thomas, Kentucky)

Today it seems like we are all so busy. So many things to do, so little time. Our skin seems to be so much thinner also—the smallest things can set us off, over the edge. It’s easy to get attention for things that irk us with communication to the masses being available at our fingertips, pretty much whenever the mood strikes.

In my life as a Lawyer and Special Needs Advocate for my son, Jack, who has Down Syndrome—I attend to issues of human behavior that can be pretty frustrating which is why acting with Reason, Respect & Grace makes so much sense as a counter to what often can seem like an onslaught of bad feelings.

WHAT is Reason, Respect & Grace? Acting Reasonably within the shadow of the law. Showing Respect for others. Using Grace to treat others the way you’d treat yourself. WHY RRG? Because these sensibilities instill a sense of optimism and when used in tense situations, can make the unmanageable, manageable. There’s almost always a silver lining to a situation even when sometimes it seems invisible.

That’s what makes me different. Finding your silver lining is a lot better for your soul than refusing to look for it.

And most of all.  Reason Respect & Grace is about them.

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It’s what I want them to emulate.  What they need to survive, to thrive, and to fly.  RRG2